Moms on Monday # 20 / Barbara from FL

Good morning fellow families of resilient and adorable children who have cortical visual impairment!

This morning we have the pleasure of hearing from Logan’s mom, Barbara.

logan and parents

Photo: Barbara, a woman with short dark hair, She holds the right arm of Logan, a little boy in a shirt and tie who is held by his father, Leo, a tall man with dark hair. They are all smiling.

When we first spoke, my intention was to ask Barbara the questions that other moms have been kind enough to answer for earlier Moms on Monday posts.   As any parent of a school-age child with CVI knows, it’s still IEP (Individualized Education Plan) season. That means CVI moms and dads across America are buying Tums in bulk and putting lawyers on speed dial in their never-ending search for a Free and Appropriate Public Education (FAPE) for their children. (It’s the law, by the way.) 

We didn’t get around to the questions during the first conversation because Barbara’s focus (like so many other parents of school-age children with CVI) is making sure his school team understands that cortical visual impairment requires accommodations throughout the day, extra training for staff, and modifications for school materials.

 


“Every obstacle that has been put in front of him, he has overcome.”

logan and glasses

Photo:  A little boy in a green t-shirt and sports glasses.  Smiling broadly, he is missing one of his front teeth.

Logan is 5 years old. His mom and dad recently attended the transition IEP meeting to prepare for his kindergarten placement.  The school team proposes placing him in a self-contained classroom for visually impaired children. Barbara would like Logan to be placed with his peers in an inclusive setting with appropriate support.  She would like to tell them to “stop putting my round peg in your square hole.”

According to Barbara, this year the focus is to make the school system understand how much they don’t know about CVI. They can try to contest the CVI Range, but they are required to give him ACCESS to his environment.

“We need him to be independent.  We don’t need them to feel sorry for him and think ‘Poor thing.’ We don’t want them to assume that he will never get a diploma. At the end of the day, he’s going to have to function in the real world.”

A teacher at the proposed placement told Barbara, “I’m not trained in CVI.  I’ve never had a kid with cortical visual impairment.”

At the IEP meeting, Barbara was told, “Our teachers aren’t required by law to become CVI endorsed.”

She replied, “But, you are required by law to teach my son.”

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And, this, fellow parents, is where we find ourselves in IEP meetings across America.  Our children exhibit some or all of the 10 characteristics of cortical visual impairment.  They require assessment so teachers will understand how our children use their vision and to plan accommodations to help them improve their functional vision.

The assessment is the CVI Range (Dr. Christine Roman).  The CVI Range was validated by the research of Dr. Sandra Newcomb (Journal of Visual Impairment and Blindness, 2010).  

Our children’s vision can improve.  This is an issue of accessibility not disability.  

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Logan is currently non-verbal.  Over the past 6 months he has learned how to communicate with an AAC  (Augmentative Alternative Communication) device.   During the meeting, Barbara requested that Logan’s teacher receive training in how to use AAC devices and how to communicate with children who are non-verbal, but this training was not added to the IEP.

In response, the school system requested that Logan be assessed through an educational evaluation by a psychologist.  Barbara, his mom, is also a developmental psychologist.  She explained to the school team that psychoeducational assessments are not appropriate for children with visual impairments.  (See post:  Death by IEP / Why Formal Assessments Do Not Work for Children with CVI or other Sensory Loss) 

Barbara would like a teacher who understands cortical visual impairment and how Logan communicates with his AAC device.

What I want educators to know about Logan.

“Logan enjoys a challenge.  He never gives up.  I want educators to know that teaching Logan is about giving him ACCESS to his education.
I recently saw a video of a mother whose daughter has cerebral palsy. The mother explained how hard it was for her daughter to get her body to do what she wants it to do. She said that people often misinterpret difficulty – the physical difficulty of getting your body to move the way you want it to – for an intellectual disability.
Logan has overcome every challenge placed in front of him. One time, when he was a baby and still not sitting up yet, I heard him laughing in another room. I went in to see what he was doing. He was laughing because he had gotten himself into a sitting position all by himself. From then on, I knew that laugh meant he was up to something.  He doesn’t give up.
School is supposed to offer him the least restrictive environment, not the most restrictive environment. At the end of the day, he is going to be in the real world. I want him to have experiences in the real world and, for me, this means being educated along side typically developing peers.”

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Introduction:  Logan lives in Florida with his mom, Barbara, dad, Leo, and 3 siblings, Lauren, Liam, and Landon.  Landon and Logan are twins.

What does Logan like to do?  What makes him laugh?  What are his favorite activities?  What do you like to do as a family? 

Logan is a very social kid.  He loves to interact with other people  both adults and children.  He loves it when people play games with him and sing to him, especially interactive songs like Wheels on the Bus.  He loves to play Peek-a-Boo.  He enjoys when I go outside and surprise him by looking in the window.  He is a very active kid.  He loves to dance and to jump around.

We do all the stuff other families do.  He goes where we go.  We go to the pool, play in the yard, go to museums and Disneyworld.

logan and siblings

Photo:  Four children posing for a picture with big smiles.  Three boys, Landon, Logan, and Liam  in colorful checked shirts and dark pants.  Their older sister, Lauren, in a red dress with a matching red bow in her long curly hair, stands in the middle behind Logan.

When did you learn about CVI?  How were you given the diagnosis?

“Stumbling over diagnoses” has been a recurrent theme with Logan.

When he was 8 months old, he began sleeping a lot. When he woke up, his high-pitched cry was different than his usual cry. I remember taking videos of spasms that happened when he slept.

We had lots of doctor appointments back then since the twins were preterm.   I asked about the spasms and the high-pitched crying.  It wasn’t until we went to a new neurologist that we were taken seriously.  The neurologist took one look at him and told me to go to the hospital immediately. He was hospitalized with Infantile Spasms.

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I tried to get him enrolled in a special needs daycare through the state because he needed every therapy there was and my insurance wouldn’t cover it. It was a struggle to get him into the program even though he fit their criteria.

The head therapist suggested that I apply for Medicaid waiver funding for Logan. I told her we couldn’t because my husband works.  She told me Logan had one of those diagnoses where he would be eligible.
“What diagnosis is that?” I asked.
She printed out a list of eligible diagnoses.  One of them was cerebral palsy.

“He has this?”

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I have gotten used to going against the grain.
When Logan was smaller, we decided that Logan should have a selective dorsal rhizotomy in the hopes that he would become more mobile. His physical therapists advised against it. After the procedure, he began standing and even learned to use a walker.  He now walks without assistive devices.

The physical therapists are now recommending the procedure to other families.

logan the explorerPhote:  Logan in a t-shirt that says “Little Explorer”  walking with a reverse walker

 

A couple of years ago, I attended a conference on cerebral palsy and developmental medicine.  It was then that I first heard about CVI.  I thought, “Oh, this looks complicated.  I don’t know if this applies to him but I have to learn.”

Logan had been followed by a pediatric ophthalmologist because he also has strabismus and we were patching.  Yet, I had never heard about even the possibility of CVI from our ophthalmologist.

When Logan was 3 years old, I told our neurologist that I noticed things that didn’t “make sense.”  I found it odd that TV didn’t interest him at all.  His sister and brothers watched cartoons, but cartoons didn’t interest him.  I wasn’t thinking about vision.  I’m a developmental psychologist.  I was thinking maybe the cartoons were abstract and his thinking was too concrete for them.

The neurologist couldn’t answer my questions.  She said there were no studies on kids who don’t watch TV.

I took my newfound information about CVI to our pediatric ophthalmologist and asked him if it was possible that Logan had CVI.  He said, “Yeah, he has that.  I guess I’ll refer you to the Lighthouse for the Blind.”

I was floored.  It was like receiving a cancer diagnosis.  I didn’t know anything about CVI.  And now, you’re telling me my child is blind and you’ve never told me this before?

I asked my pediatrician how long the diagnosis had been in his file.  Apparently when Logan was 2 1/2 years old, the diagnosis was added to his file without informing me.

Anger wasn’t going to get me anywhere.  I knew I had to learn.  I found Dr. Roman’s videos on the West Virginia website  (http://wvde.state.wv.us/osp/vi/cvi/cvi-special-topics.html).

How was Logan’s early intervention experience with regard to CVI?

We didn’t know he had CVI for 4 years.  When I finally made contact with the Lighthouse for the Blind they sent someone to come work on a few things through the Blind Babies program.  However, once he entered the Visually Impaired program within our local school district, the Blind Babies program closed out the case.  In the school district, we were only give consultation services from the TVI.
Now that Logan is 5, the Lighthouse for the Blind is supposed to offer services for children with blindness and visual impairment. They offer blind children support with braille or technology 2 Saturdays/month. When I ask for services for CVI, I was only offered once a month.

What would you tell a mom whose child has just been identified with CVI?

First, I would say it’s not the end of the world.  CVI is treatable.  Their vision can improve.

You are not alone.  I haven’t found any other moms here of children with kids with CVI.  One of the things I have found is that Facebook can help you find a community and can help you find answers.  For example, I found out that the Texas School for the Blind was holding a conference on Phase III with Dr. Christine Roman-Lantzy.  There were grants for families to attend, but the families had to be from Texas.  I asked our Lighthouse for the Blind and Division of Blind Services if there was grant money for this conference.  They said no.  I paid to go to the conference.  I was grateful that TSBVI waived my registration fee.

At this conference, I got a lot of information.  I got to meet Dr. Roman.  I learned about the weekly CVI conference call sponsored by the Lighthouse Guild.  I learned that there are TVI who are willing to learn about CVI and work with families to help them learn more about giving their child access to their environment.

What would you like people who have never heard of CVI to know?  

CVI is a lot more common than you think.  It is not a problem with his eyes.  It is his brain.  His brain has a hard time taking in visual information.

He is a very social kid.  Still, I have to explain to people at school that when you see him smiling and waving at you, he sees you, but he doesn’t know who you are.

What are your hopes and dreams for Logan?  

My hopes and dreams for him are the same ones I have for my other kids.  To be successful in school, to have friends, to be the typical kid he is.

I have learned to quiet that part of me that says “He can’t do it.  I have learned to quiet the skeptic in me.  No one knows his potential.  Including me.

I have to try.

It’s what moms do.

It is what moms do.  Every day.  Thank you Barbara for sharing your experiences.  You have a beautiful family.  

 

Hope has work for us to do

About 8 years ago, I attended a conference at a School for the Blind I will not name to learn about the options for transitioning visually impaired toddlers to preschool.

During a panel presentation of expert educators at the school, a grandmother sitting down the aisle from me raised her hand. She stood and asked about the diagnosis her grandbaby had just received, “It’s called cortical visual impairment. I’d like to know what we can do to help her.”
At that point, my daughter was going on 3 years old.  I had been researching CVI and how to modify our home environment for Eliza for a couple of years.  We had seen Dr. Roman-Lantzy a couple of times.   I was waiting to hear the experts recommend her book or mention that vision can improve with accommodations – with education. I wanted to hear what this panel had to say – maybe they knew something I didn’t.
Then, one of the experts told the grandmother and the whole auditorium of parents from all over the state that there was nothing she could do.  CVI might  improve. It might not. At her granddaughter’s young age, she would just have to wait and see and hope her vision improved.

Wait and see and hope.

Wait

&

See

&

Hope

?

If that is not the most passive recommendation you’ve ever heard, then I don’t know what is.

Yes, there are times when a situation is beyond your control and the only thing to do is to wait and see and hope.   I am familiar with these times.

There are also times when you create hope through your actions.

It’s important to be able to tell which is which.

The experts went on to the next question. The grandma sat down and folded her hands in her lap.  My jaw fell open. I wanted her to ask a follow up question.  I wanted her to ask why they thought there was nothing that could be done for an infant with CVI.

I wanted to stand up and tell them they were dead wrong.  Neuroplasticity makes an infant’s brain open to learning: It makes new pathways for functional vision possible.  The time to begin working with her granddaughter was yesterday.

I wanted to reach across the aisle – across the other families separating us – so I could pat her hand and tell her that she had not been given the right information.

 

I didn’t.

I sat in my seat and stewed. I didn’t feel as though I knew enough to raise my hand in front of a crowd to contradict the very people who were hosting the conference.  It was frustrating and surprising that a school could be giving wrong information to families.

I regret that silence.

I regret not sharing my story with that grandmother.

I regret not asking her for her story.

My silence did not serve anyone that day.  Because I stayed silent, that woman remained alone. Sitting down the aisle from her, I remained isolated from her. We left and went our separate ways.

I hope she went home and continued researching.  I hope she found the support she needed.  I wish it didn’t have to be so difficult to sort out accurate information about cortical visual information and how to support children with it.
I have thought about silence a lot over the years.

How silence keeps people separated.  How silence allows incorrect information to stand uncontested.

I have thought a lot about hope.

Being hopeful can be a very vulnerable place to live.  For every one person who agrees with you, there are twenty who look at you funny and wait for your high expectations to come crashing down.  For every one person who offers a hand, there are twenty who are quick to step back with a snide comment or a sigh.

Cynicism is easy.  It requires no effort at all. It is dull and lifeless.  Cynicism is fueled by fear – fear of exposure, fear of failure, fear of judgment.

Hope can be hard.  Hope requires energy.  Hope is fueled by love.  Thankfully, love is the easy part.  We have an abundance of it.


Sometimes, if you are lucky, you find words artfully put together that capture a feeling you carry around with you.  Finding them makes you feel less alone.  Sharing them makes your heart happy as though the words could stretch out to embrace someone the way they embraced you.

Recently I was lucky enough to stumble upon words that described my favorite kind of hope.   The hope I know what to do with


“Though hope may sometimes seem like a luxury – frivolous, groundless, insubstantial – it is precisely the opposite.

Hope is elemental. It is made of some of the strongest stuff in the universe.

It endures.

Hope does not depend on our mood, our disposition, our desire.

Hope does not wait until we are ready for it, until we have prepared ourselves for its arrival.

It doesn’t hold itself apart from us until we have worked through the worst of our sorrow, our anger, our fear.

This is precisely where hope seeks us out, standing with us in the midst of what most weighs us down.

Hope has work for us to do.

It asks us to resist going numb when the world within us or beyond us is falling apart.

In the height of despair, in the deepest darkness, hope calls us to open our hearts, our eyes, our hands, that we might engage the world when it breaks our hearts.

Hope goes with us, step by step, providing the sustenance we most need.”

– Jan Richardson, The Cure for Sorrow

 

This is what is rattling around in my busy head these days, fellow families.  Some days, some years are like that I suppose.  Most days I do my very best to listen to what hope tells me to do.  There is work to be done.

Every day, I know that cynicism is a luxury I cannot afford.  I know that.

On the days, I can’t listen to the “to-do list” hope has for me, I am comforted by the fact that there are others who will listen for me until I can engage the world again with a broken and fierce heart.

This is me waving from my little corner of chaos to yours with affection and flowers of particularly popular colors I’m sure you can appreciate.

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Moms and Dads on Monday / Early Connections Conference 2018

 

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After a full day of presentations on a wide variety of topics and fun activities, parents of young children with vision loss came together in the school auditorium.  Before they left, I asked them to share something they were going to take away from this experience by writing it on a post it note and placing it on a whiteboard near the stage. Some folks wrote a single word.  Some wrote more.  Each sentiment is the beginning of a story only they can write.  A story with an ending they can control.

Maybe, a story they can share when they speak at the Perkins 50th annual Early Connections Conference.  Or 75th…. who knows?

post-its.png

Here are the words of the parents.

Hope

I hope every parent can be brave to fight their children

The kid with special needs was born to show us WE ARE STRONGER THAN WE THOUGHT

Support each other

I want to bring this amazing inspiration to my home, family, work, city, and country – all countries!

Stay strong.

We are all on a journey looking for answers and connections.  #FeedtheHope

If a 3-year-old understands this, then I need to up my game. #FeedtheHope

Be motivated by love, not fear.

Community

It’s okay to be sad.  It is okay to cry.  I got your back.

Inspiration

Be an involved dad!

Feed the good wolf

Be positive.  Life is good.

Medical imaging will not define what my child can do.

Don’t stop dreaming.

You’re a great Mom!  Congratulations Perkins

A future together

I’m not alone anymore

Inspired and thankful

Every parent has a story.

SO MUCH INFORMATION!  (I learned a lot.)

Expect miracles

Belief statement about your child

Knowledge

Advocate

Unconditional love

Balance is important.  Remember to stay connected.

Treasure the special moments

Rainbows always come after the rain

Every family has their own story about their amazing kids!

JOY!  To find it whatever situation – family, friends, church, work, community

Perspective

Faith in action!

Every day my life is inspired and strengthened by moments of joy.

It will get better.

There is a nice way to ask for commitment to follow IDEA.

Doctors needs sensitivity training.  Listen to your gut.

It’s OK.

Just keep swimming but know where you are swimming to!

Keep going!

Family connection is essential.

Be your child’s advocate.  The experts don’t always know what’s best.

Families are powerful, knowledgeable, and resilient.

You are not alone.  You are an amazing parent.  Don’t ever think otherwise.

I will choose how the story ends.

Teamwork

Faith

Never feel alone again.

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Image: An illustration of the words “We’ve Got This” held up by a group of women.  A baby sits on top of the words holding a rattle in the air.  Illustration doodled  by Ian Christy  (https://www.instagram.com/i.christy/)

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Image:  Ron Benham , Danielle Bangs on the left.  Teri Turgeon standing on the right of a whiteboard.  On the whiteboard is written “Happy 35th Perkins School!”  The whiteboard is covered in colorful post it notes.  

At the end of the conference, Perkins recognized the achievements of Ron Benham, who is retiring from his position as Bureau Director at the Massachusetts Department of Public Health.  Ron was one of the people in Massachusetts who understood the importance of early intervention and helped to build (and find funding) for the service system over 30 years ago.   Families of children with special needs benefit today from the decades of work of dedicated professionals like Ron Benham.

Bravo Ron!  Bravo Teri and Ed and Danielle and everyone at Perkins!  Bravo fellow families!  We are in this together!

What I Would Want Someone To Say To Me / Early Connections Conference

Hello fellow families of magnificent children who happen to have a diagnosis of cortical visual impairment,

I had the opportunity to speak to a group of families with children (ages birth to 7) who have vision loss at the Early Connections Conference at Perkins School for the Blind.

A few months ago, Education Director, Teri Turgeon wrote me and asked if I was game to come to the conference and speak.  There may have been a moment of panic.

“What do you want me to say?”  I asked her.

“Just tell your story,” she said.

Huh.

This got me thinking.  And over-thinking.

I have nearly 12 years of Eliza stories.  Most often, I blurt them out at inopportune moments –

to E’s ABA therapists as they are collecting what they need before a session,

to GI nurses asking me for her health history,

to her school aide who just really wants to go to lunch. (And that is just this week.)

These are the people I see most frequently.

I realize as I get some perspective on this past decade or so, these stories have to be told.  If only so I can get out from under them.

Here was an actual invitation to speak instead of someone politely nodding until I trail off….  Bliss!

Here’s the first half.

I am the mother of a child who received early intervention services.  Which means that I am a mother who received early intervention services.  These supports are as much or more for us than for our children.  Even when your child “graduates” from EI, you’re always an early intervention mom.  It’s a world we never knew existed until we needed it.  I will always carry a debt of gratitude for the compassion and knowledge a team of women in two states brought into my house.  Women who saw me at my most desperate and disheveled.  Women who never once said, “Haven’t you been wearing those sweatpants for a week?”

I know firsthand how important early intervention is.  It is critical to have intensive support at the beginning of your journey of becoming the parent of a child with special needs.

And, it is a becoming.

Becoming a parent changes you.

Becoming a parent of a child with vision loss and special needs changes you.  814348If you had told me 10 years ago that I would have a chance to speak to a group of families like mine, I would have paid more attention, or tried to – as it was the sleep deprivation and worry nearly killed me – so, maybe not.

This is the 35th annual Early Connections Conference.  Being here to celebrate Perkins’ commitment to the education and support of families like ours is an absolute joy for me.

When I thought about coming to speak to you, I thought about my own conference experiences.  I’m usually sitting where you are trying write down every word.  Because Eliza is a puzzle.  She has multiple diagnoses but no definitive diagnosis as a cause for her issues, I’ve been to a lot of conferences trying to figure her out.  I went to anything I could find on cortical visual impairment.  I went to conferences on Cerebral Palsy, general special education and early childhood conferences.  I was a conference groupie.

As life with Eliza unfolded, more complications occurred.  We all got less sleep.  Life became more stressful and – yes – complicated.  (Complications make your life complicated.  Mind blown.)

She was a puzzle. I was trying to find THE expert who could explain what was happening to us.  Someone who could fix everything or SOMEthing.  In spite of my best efforts, it slowly became apparent that this was not a possibility.

It was just really hard.

At the time, I thought if I just try harder, if we add one more therapy, if I read one more book or find one more specialist or go to one more conference – then I can help her learn how to bear weight on her legs, or sit up independently, or eat, or speak.

My thought process went like this: I have seen the movies!  I can do this.  All it takes it a plucky mom who never gives up.  Right?

My experiences with conferences usually had one of the two following outcomes:

  1. Conferences where the speakers (either parents or self advocates or doctors) seemed to have everything together.  They overcame challenges with a single bound and sheer dint of will.  They held down full-time jobs as lawyers, saints, superheroes or supreme court justices, yet they still had time to do genetic research in their basements.  And, this research solved their child’s (or their own) mysterious condition.  THESE are the people Lifetime movies are made of.
  2. Conferences where a brilliant teacher or researcher knew what I needed to know – THE APPROACH I needed to learn.  THE information that would improve my daughter’s quality of life.  This teacher had all of 45 minutes to present, however, and I needed 3 to 5 years of mentoring/modeling in my home to understand it.

What’s worse, these presenters rudely refused my attempts to kidnap or clone them.

(I mean, what is a little hair sample between conference attendees?  And, what if I had been able to kidnap or clone them?  Now there’s your Lifetime movie right there, folks.  We could even have been an HBO series. Maybe Dame Judy Dench or Tony Shalhoub would have played me.  I’ve been watching Monk again recently.  The man is a treasure.)

Either way, I would go into a conference bright eyed and hopeful.  I’d see a few presentations.  I would start to feel frustrated and overwhelmed.  I’d slink away to a quiet spot somewhere to call my husband.  I’d call (maybe crying a little bit) and tell him how much we don’t know, how much we aren’t doing, how I am failing as a parent and a human being, how everyone else gets it and I just don’t and what’s wrong with me, what’s wrong with you that you married me – you get the drift.

After listening as patiently as possible, Robb would inevitably threaten to change the locks on our front door if I continued to go to conferences as a form of self-punishment.

This is fair.  (Uncool, but fair.) 

It was just that – to me – it felt as though everyone else knew what they were doing.  If I could just learn what THAT was, our lives would run smoother, my daughter would make more progress faster and easier, maybe we’d sleep a little.  What was I doing wrong?

While the problem surely wasn’t with the events or presenters, it was with me, I still felt isolated and incompetent.

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The Early Connections Conference has a lot of support to offer.  I wanted my presentation to be a positive experience for any other conference groupies.

To be clear, I am no expert on anything. And, I don’t have time to be kidnapped.  We couldn’t afford the ransom; we have a kid with special needs.

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I may never again get the chance to address a crowd of parents who are just where I was a decade or so ago.

What would I want someone to say to me?

E and mom

Image:  A woman who hasn’t slept in 18 months smiles wearily at the camera. She is holding the hand of her  blond toddler in glasses.  The toddler leans up against her.

 

HEY YOU.  Yes, you – the tired woman leaning against the counter in a dark kitchen cramming Baked Lays into your mouth at 3 a.m. You are standing in the dark, staring straight ahead, seeing nothing.  You hope chewing will drown out the sound of your baby screaming upstairs.  You just came down to take a break.  You’ve been trying to console her for half an hour, 2 hours, 4 hours – depends on the night.  You are beyond exhausted. You are numb.  Wrung out.  The only thing that makes sense is chewing fistfuls of chips and remembering to breathe.

You aren’t thinking straight, so may I suggest taking a shower?  You haven’t had one in 3 days.  Believe me, she will still be screaming when you get out.

You are numb, but somewhere in a tiny corner in your mind where your emotions are stuffed, you are scared that this is what your life is going to be from now on.  That you will never have a solid night of sleep again.  You are worried and so scared.  There is so much you don’t understand. You want to scream.  Or, more accurately, if you had enough energy you would seriously consider it.  At times, you are stunned that you can produce that many tears.  But, you are past that right now. You are aching to find a quiet hole to crawl into but your worry and your love wouldn’t let you rest even if you did.

HEY YOU.  You will get through this.  You won’t be the same. That can be a good thing.  There are many of us who have gotten through this.  We have stories to tell. And so will you.

You will be a more vulnerable yet tougher (if that makes sense) version of yourself.  You will laugh louder and take yourself far less seriously.  Years of living outside your comfort zone will give you the gift of not caring what other people think. (You may even start a blog!  How crazy is that?)  Your kitchen floor will often be filthy.  You just won’t care.

You will find yourself filled with so much gratitude for the kindness and patience bestowed on you and your girl on a daily basis.

You will find yourself with far less patience for incompetence, below average medical staff, and uninspired teachers.

You will be startled by the haggard woman in the mirror from time to time, but you know she is doing the best that she can.

You will learn that people really do help when they can.  Sometimes they just can’t.  Even when you ask.  As a result, you will learn that you can hear the word “no” and – surprise – the world will not fall apart.  You will be broken down and broken open – by life circumstances, by other people’s perspectives, by the enormity of the love you never imagined until you became a parent, and by the responsibility that goes along with it.

You will learn that you can take hit.  You can take a hit, get back up and get on with it.  You are stronger than you ever imagined.  This  is not a meme someone posted to make you feel better for 10 seconds.  This is the reality of living through challenge after challenge and standing up to love and to try again the next day.  That is your truth.

Yes, she is really is a complicated kid.  When she was born, you moved right out of any comfort zone you had grown used to and into the perpetual discomfort of the unknown.  Unknown diagnoses, unknown potential, unknown ability, no support group for your puzzle kid.

So, no, you are not doing it wrong.  It is really hard.  It is a lot to learn.

You will learn over time that kids with vision loss, especially CVI, are complicated.  CVI does not stand alone.  The population of children with vision loss has changed over the years.  Thanks to advances in modern medicine, our premature babies, babies who have medical crises, and puzzle babies like Eliza, are surviving.  These babies often have multiple diagnoses. They are surviving and thriving!

This is a cause for celebration (after we’ve all had a 2 year nap and some early intervention services.  I am an optimist and a realist.)

Because of this, however, we are all running to catch up to their needs – to learn how they communicate, how they learn, how to help them see.

And, NO, she doesn’t sleep!  (Have I mentioned that before?)  And, yes, that stinks.  It is cruel and unusual.

It is overwhelming.

(A piece of advice:  You know how they say don’t make any major life decisions when you are in crisis? 

Don’t go to the hairdresser on a whim and ask for something completely different.  Just don’t.  You WILL end up with orange hair and it WILL NOT “compliment your complexion” no matter what anyone says.  They are just saying that because you’ve been wearing the same sweatpants for 4 days and they feel sorry for you. 

It had to be said.)

HEY YOU.  This girl.

E with bib

Image:  A blue eyed baby wearing a bib with pink flowers stares into the camera.

She will bring the BEST people into your life.  The. best. people.

There will be some crummy ones too, but they never stay long because she takes some work.  We don’t have time for them anyway.

Life with her is intense.  It is real.  It can be boring.  It can change on a dime.  You will get better at this.  It will still be difficult some days.  Being a parent is difficult some days, period.  It is not for sissies.

This girl.

E in bouncy seat

Image:  A chubby cheeked baby reclines in a blue bouncy chair

She finds joy in the places you forgot to look.

Be with her.  Learn from her.  The bond you establish with her now just by being present and loving her unconditionally is the foundation to every future success.

And, the best part is that this is the best part!  It is supposed to easy.  It is.

There is no doubt that therapy is important.  Doctor’s visits are important.  Second and third opinions are important,

HOWEVER,

Remember that day when the OT cancelled?  It was in the summer when Eliza wasn’t even a year old and Anna Cady was a curly haired toddler?  You were  relieved  when the appointment was cancelled. For a moment, THE schedule lifted.  The OT, PT, Development Therapy, the vision lady who came but didn’t understand CVI.  For a moment, it all just stopped.

SKY

Image:  Bright blue sky with white clouds

On that afternoon you took a blanket out in the backyard.  You and the girls stretched out on the blanket.  The grass was cool on your feet in the shade of the jacaranda tree in full fuschia bloom. You and Anna Cady looked up at the sky and watched the clouds drift by.  Eliza didn’t see the clouds, but she was lying between two of her favorite people.  She felt a warm breeze on her face.  She smelled the blossoms.  She heard your voices as you giggled and pointed out the shapes of animals shifting in the clouds above.  She was included.  It was simple and fun.  Just the three of you enjoying each other’s company.

Remember that?

DO THAT MORE.  Do not take any of this for granted.  Slow down, sister.  This time is so important.  Enjoy her.  Let her enjoy you.  There is more to see here if you take the time to look.  You don’t have to do all the time.  She is who she is.  Let her show you who she is.

Baby girls

Image:  Two little girls, a bald blue eyed grinning baby and a wide eyed toddler smiles for the camera.

She is not broken.   You are, a little bit.  She loves you in spite of your broken parts.  She and her sister will help you put them back together again in ways you never imagined.

That is what I would say to my 10 years ago self.

Thank you for indulging me.

 

 

 

We’ve Got This! / Early Connections Conference 2018

Hello fellow families of marvelous children who have a diagnosis of cortical visual impairment!

On Saturday, April 28th, Perkins School for the Blind held its 35th annual Early Connections Conference.  The all day event offered “parents and professionals throughout New England” the opportunity “to network, share ideas and strategies for helping children with visual impairment from birth to age 7.”  (www.perkins.org)

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Image:  A poster for the Early Connections Conference

I had the pleasure of attending the conference this year.  According to Perkins’ Director of Community Programs and Conference Chair, Teri Turgeon, this year’s attendance totaled 106 parents and 38 professionals (including teachers of the visually impaired, speech therapists, and occupational therapists).

Even though my daughter is almost 12-years-old, I still have a lot to learn.  I found it hard to choose between the variety of presentation topics from the Expanded Core Curriculum to Issues with Complexity in CVI to What about the Dads?  From Has your child had a low vision evaluation? to CVI: Assessment, strategies, and implementation across the day to Strategies and resources to support children who are deafblind. And more!

(I went with Expanded Core Curriculum and CVI Complexity as these are two important pieces of the ongoing development of Eliza’s IEP and, really, her life.)

Historically, Perkins has been and continues to be the leader in educating children with ocular and cortical visual impairments.  With the Early Connections Conference, Perkins is a leader in supporting the families as well.

It was a warm and sunny Saturday in Boston.   The lawns on Perkins campus were green with new growth thanks to rain the day before.  Outside the Lower School Building, picnic tables and a bouncy house had been set up.  Inside, Perkins staff and volunteers were ready to hand attendees their welcome bags and help parents get their children involved in the day’s activities.  Vendors (including the Pediatric Cortical Visual Impairment Society) displayed information and products in the school auditorium where parents and professionals could browse while helping themselves to a continental breakfast.  (Well played, Perkins.  I have never met a bagel I couldn’t learn to love.)

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Tables set up in the Perkins auditorium.  The PCVI conference materials, a display with children’s faces and a table with a black tablecloth and a white drape with the PCVI logo over it.  A group of people stand at the table to the right speaking to another vendor.

Ed Bosso, the Superintendent of Perkins School for the Blind, and Teri Turgeon welcomed the families.  Ed shared that, despite a long career in special education, becoming the parent of a child with a visual impairment was a challenge for him.  He found comfort and information at a previous Early Connections Conference.  For him, attending the conference and meeting other families, meant you will “never feel alone again.”

Teri Turgeon (also the parent of a young adult with a visual impairment) told the attendees that she hoped the conference helped them “fill their cups.”  She explained that there are experiences in your life that are intersections and the choices you make can change the direction of your life.  She hoped that the conference would be an intersection for families to move forward.

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Image:  A drawing of the words “We’ve Got This” held up by a group of women.  One woman holds a baby.  Another baby sits on top of the words holding a rattle in his raised hand. 
Thanks to illustrator extraordinaire, Ian Christy for this fun take on the conference theme

The educational aspect of this conference was a big draw for me, but, what made my heart happy was seeing all of the children. A little girl in a pink t-shirt and holding a white cane expertly navigated in and out of a crowded elevator. Volunteers in red t-shirts took children for walks and painted faces.  In one room, a table of little girls, all bright colors, elbows, and ponytails, drew pictures while a grinning little boy tossed a ball with a teenager, or, rather, near the teenager.  The game seemed to be more fun to the boy if the young man had to chase the ball.

One young mother was hesitant about leaving her infant daughter in the nursery.  I overheard Teri tell the worried mom that when she (Teri) brought her daughter to this conference years earlier she had never even left her daughter with her grandparents. Hearing this conversation, I remembered the strong urge to get an occasional moment away from the never-ending responsibilities of being the mom of a baby with special needs.  And, I remembered the equally strong worry that something would happen if I wasn’t with her. In the first year, the only person I eventually left Eliza with was my mother, a retired nurse – after I had checked her references, of course. You can never be too sure.

The children!  That’s why we were there!  That’s why we are learning as fast as we can and asking questions and reading articles and advocating in schools and beyond.

I got to meet Savannah and her mom, Lacey (Moms on Monday #18 is a loving tribute to a beautiful girl and her dedicated mom).  I got to meet Adam and his parents, Lara and Todd.  (Lara assured me she will be a Mom on Monday someday.  This is in no way a blatant attempt to persuade her to answer those questions I sent her.  Not. At. All.)  These pictures were taken at the end of a long day and both kiddos were ready to go home.  They were very patient to let us take pictures. Adam gave me a very polite High 5.

A8FDF09A-8232-47F4-A605-2310510EF7ED11A34ECD-3BCD-4C8A-B16A-BF4F1F9FCC5D

Image: A curly haired girl with glasses in a wheelchair between two smiling women
Image: A dark haired boy, sitting in a chair, leans over the tray of his chair.  His father kneels behind the chair with his arm draped over the back while his mother leans in on the boy’s left.  Both parents are smiling.  And, the mother has promised to be a Mom on Monday.

I will follow Adam’s lead and give you my own cyber High 5 to conclude this post.

More to come on the information given and stories shared at Early Connections 2018.

 

More of Ian Christy’s art can be found at https://www.instagram.com/i.christy/

or

http://www.scruffcheek.com

 

 

 

 

Nicola McDowell’s CVI Journey

Hello fellow families of beautiful children who happen to have a diagnosis of cortical visual impairment!

I had the great joy to attend the Early Connections Conference at Perkins School for the Blind yesterday.

There will be posts to follow.

In the meantime, I wanted to be sure to mention a recommendation that the CVI Teacher, Ellen Mazel, gave during a presentation about complexity.  She recommended that people interested in learning about what it is like to live with CVI watch a YouTube video posted by an adult with CVI, Nicola McDowell.

Parents, we need to watch this video.  We are on the frontlines of educating the medical and education communities.

This is a video you can easily send to your pediatrician and your school team with the information that CVI is the #1 pediatric visual impairment in the U.S. and the first world countries.

https://www.bing.com/videos/search?q=nicola+mcdowell&qft=+filterui%3amsite-youtube.com&view=detail&mid=69BB6512FDFB3ECEAF0569BB6512FDFB3ECEAF05&&FORM=VRDGAR

Nicola McDowell has done all of our families a great service in describing the anxiety in her life caused by cortical visual impairment.  I was fascinated by her description of what she sees, and how she has to strategize future social occasions to avoid becoming overwhelmed.

Nicola’s story helps me better understand my daughter’s experience.  Her information is invaluable.

Check it out!

 

 

 

 

Moms on Monday / Melissa Keller

Good morning,

I had a post lined up for today.  Then I learned late last week that a friend of mine, Melissa Keller, died after a long battle with ovarian cancer.

Today, in Bloomington, Indiana, her family and friends are going to meet at the local Unitarian Universalist church to celebrate her.  She should be celebrated far and wide.

I do not live in Indiana anymore.  I am sitting here in Virginia with an ache in my heart and a smile on my face as I think of Melissa.

I did not get to know her for as long a time as some of her friends.  She actually reached out to me 5 or 6 years ago.  She was a professor at Indiana University who taught early childhood courses.  She read in the local paper about the work I was doing with an agency called Visually Impaired Preschool Services to bring early intervention for infants and toddlers with blindness in Indiana.  She had convinced IU to rent a bus and had taken her early childhood class on a field trip 2 1/2 hours away to Louisville, Kentucky where the VIPS office and preschool facility is.

She emailed me after the fact.  I was surprised and amused that a bus full of Hoosiers showed up on VIPS’ doorstep.  I had known nothing about it.

She and her students toured the facility.  They observed some of the preschool classes.  She appreciated the reverse inclusion model at VIPS where typically sighted peers attend classes geared toward children with vision loss.  Everyone benefits from a more tactile approach. Everyone learns empathy. Everyone is celebrated for who they are and for what they can do.  Everyone learns at their own pace.  Simple as that.

She wrote me a complimentary email after the tour and invited me to speak to her classes which I did. She wanted her students to become aware of the possibilities of a career in early intervention.   After a presentation one year her classes made tactile toys and books for the VIPS welcome bags we provided to new families.

Melissa and I had known each other for a few years when she sent me a Christmas card.  In the card, she wrote that it had just occurred to her that I may not know she had a connection to a famous woman I mentioned sometimes when explaining the urgent need for improving educational services to blind children.   She included a copy of a picture of Helen Keller.  On the picture, in square neat letters on the lower right corner was a note to a family member (I can’t remember the name. I think it was a cousin.) and signed, Love, Helen Keller.

I was honestly stunned.  Her last name was Keller, for Pete’s sake, but I had never even thought to make the connection.   We talked a little about the family a couple of times and that was that.

I wondered if her distant relative was a factor in her interest in VIPS.

It is possible although she had a long career as a champion for children as a teacher, principal, and professor in her own right.

Melissa Keller was a loving mother, grandmother, daughter, wife, friend, and teacher.  She was also a terrific writer.  Her CaringBridge site kept her fans entertained and informed as she and her husband, Thomas, traveled all over the world in a modern day hero’s journey to keep cancer at bay.  She made us laugh while our hearts broke.

She wrote a book about her experiences with her husband’s family called Crazy is Relative.  It is funny and bittersweet and very revealing about how people are shaped by their experiences in ways we cannot know unless we tell our stories.

I just wrote that Melissa Keller “was”.  I am struggling with that.

She is.  She remains in my thoughts and in my heart.

She liked to end her Caring Bridge posts with lyrics from songs she loved or was listening to at the time.  Here are some of my favorite lyrics with Melissa in mind and in heart.

Joyful Girl by Ani DiFranco

I do it for the joy it brings 

Cuz I’m a joyful girl

And, the world owes me nothing

We owe each other the world. 

I do it cuz it’s the least I can do

I do it cuz I learned it from you 

I do it just because I want to

I want to.

 

 

 

 

 

 

CVI Teleconference Call

Did you know that there is a weekly teleconference call for families of children with CVI on Tuesday nights?

This weekly call has been a source of knowledge and comfort for families like ours.  The moderator of this call is a kind and wise woman named Judith Millman.

I asked Judith about the history of this teleconference call that has been a lifeline to families across America for 11 years.

Why did the call come about?
The original idea for the Telephone Support Groups came from Dr. Alan Morse, the President of the Jewish Guild for the Blind (now LighthouseGuild). He felt that there were parents of children with visual impairment all over, particularly in rural parts of the country, who were isolated with no support systems in place and that the Guild had the resources and contacts to play a constructive role in their lives. About ten different vision conditions were targeted but CVI, being the single largest cause of children’s visual impairment became one of the first groups that was started (in 2007). It continues to be the largest telesupport group (by far) that LighthouseGuild sponsors.

How did you get involved? What is your background?
I am a social worker by training and worked most of my career in vision services. I started at the Lighthouse in Westchester Co. (White Plains, NY) as a social worker. By the end of my 30 year career there, I was the VP for the Lighthouse in the Hudson Valley, overseeing services for consumers in 7 counties. When I was about to retire, a colleague of mine, Dan Callahan, who was hired by the Guild to start the telesupport program, recruited me to facilitate the CVI group which was just about to be launched.

What are some common questions?
How can I get appropriate services for my child? The school district doesn’t seem to know much about CVI. Can you recommend an ophthalmologist who knows about CVI–mine doesn’t and told me that my child is blind. Where can I find a TVI and an O&M who really understand CVI? How can I help my child learn to use his/her vision? What strategies are helpful?

Have questions changed over the years?
I’m afraid that the questions haven’t really changed over the years. A positive factor is that more information is available via the literature, websites, distance learning courses, etc.

What are common themes in CVI that you don’t see going away – or that are increasing?
The tremendous role that parents have to take on to advocate for appropriate services–even more difficult in light of shortages in the field of TVIs and O&Ms.

What would you want parents of children with CVI to know?
You’re not alone.

CVI is the leading cause of visual impairment of children in the US. There are resources available, including a telesupport group, distance learning courses through Perkins School for the Blind, Dr. Roman’s book, webinars, etc.


If you are interested in joining the CVI teleconference call, email judithmillman@aol.com.

Thank you to Dr. Alan Morse for a wonderful way for families to create community across the miles.

Thank you Lighthouse Guild for sponsoring this call!

Adventures in Advocacy / Get To Know Them Before You Need Them

Hello fellow families of children who have CVI and deserve a free and appropriate education (FAPE!),

As you blaze your child’s personal trail in your local school system, I hope it is an easy trail to blaze.

I hope your school has ample educators who have heard of Cortical Visual Impairment. I hope these educators (and support staff) understand how children with CVI are NOT incidental learners (See blog post on Incidental Learning if you are unfamiliar with this term. It’s important.)

I hope your child has access to a Teacher of the Visually Impaired who is a Perkins-Roman CVI Endorsee.

I hope that TVI has a small caseload and can devote the time it takes to train your child’s educational staff and to modify the materials your child needs to have ACCESS to her curriculum and her school environment.

While I’m hoping, let’s just add a Certified Orientation and Mobility Specialist (COMS) who is also a Perkins-Roman CVI Endorsee.  And, let’s hope that COMS also has a small caseload of students and ample time to help your child navigate and make sense of her physical environment.

I hope your child’s teacher and support staff have ample time to make and modify materials since your child needs to have ACCESS to learning on a daily basis… like any other child.

I’m going to go out on a limb and say that my hopes haven’t been realized yet.

For the sweeping changes in educational policy that need to occur for children with cortical visual impairment to finally have access to learning, parents will need to reach out to legislators at all levels of government.

Talking points:  

  • There is a national shortage of teachers of the visually impaired.
  • There is a national shortage of Certified Orientation & Mobility Specialists.  (You may have to explain what that is.) 
  • There is a national shortage of teachers trained to teach the children with the #1 pediatric visual impairment in America, Cortical Visual Impairment.  (You’ll definitely have to explain this one.)
  • For children with Cortical Visual Impairment, vision can improve.  It is absolutely critical that children get diagnosed early and receive early intervention services from providers who understand CVI.
  • Many states do not provide vision-specific early intervention for infants and toddlers with vision loss, including Cortical Visual Impairment.
  • Our children cannot wait any longer for our education system to catch up to CVI.

Visiting your local school board meeting and asking them about shortages of teachers of the visually impaired and a lack of educators trained to work with children with CVI can get the ball rolling.  It can start an uncomfortable conversation, but it’s a conversation that needs to be started.

It will require sitting through school board meetings, but, as a CVI parent, you have sat through far worse experiences.  (Just a guess. For me, it was Eliza’s “sleep” studies or, more accurately,  “cranky-all night-Mom-wrestling sessions.” ) 

Mark Richert, Director of Public Policy at AFB (American Foundation of the Blind) has a couple of suggestions for parent advocates. 

Find your representatives and reach out to them before you need them.

Some folks don’t know who their local, state, and federal officials are.

—————————————————————————————————–

https://openstates.org

This site can help you locate your state representatives.

https://www.govtrack.us

Govtrack will help you locate your federal representatives.

——————————————————————————————————-

Open a line of dialogue with the people who work for your local representatives.  They are moms and dads just like us.  They care about children.  They care about their constituents.

Before a big “ask,” it is a good idea to get to know your officials and the people in their offices.

You can can call their local or D.C. offices and ask to speak to the staffer who works on special education issues.  Then, introduce yourself and mention a few talking points, or read from the example below.

An example email:

Dear Sen. Washington, 

I am one of your constituents.  I appreciated ___________________________  (something positive about your representative’s work). 

I wanted to take a moment to reach out to you to tell you that I am the parent of a child with special needs and vision loss.  My daughter has cortical visual impairment, the #1 pediatric visual impairment in America.  

(You can share more of your personal story and include a picture.) 

I wanted you to know that issues surrounding the education of children with special needs and sensory loss are very important to me and my family.  

I hope we can count on your continued support of our children.  

Thank you for your service, 

Thomas Jefferson

Someone from the office will write you back.  Then, you have a contact.  You can direct future issues and questions to this person.  If you are going to be in town, you can request a visit with your representative.  By establishing a relationship, you are laying the foundation to effective future advocacy.

(Sidenote:  You may think it takes a lot of people emailing about a topic to get someone’s attention.  Not so.  When legislators get more than 3 emails or phone calls about one subject they take note.  Every call, every email counts.)

When you are emailing your child’s educational team, cc: your senator, representatives, etc…

Mark suggested cc’ing your elected officials on emails regarding your child’s educational experiences.  This can help our legislators understand the scope of what we are facing when our children with CVI enter the school system.  It will certainly get the attention of your educational team.  I haven’t done this yet.  If you do, let me know what happens.  I’m intrigued.

P.S. I’ve heard that it’s better to take taxis rather than Uber or Lyft when you are going to advocate on Capitol Hill.  Taxis are plentiful in D.C. and street addresses are tricky.  It can be hard for an Uber or Lyft to find you.

fight win!

Image: Edna Mode from The Incredibles stands with her arms above her head and yells “Go! Confront the problem! Fight! Win!”

Moms on Monday #19 / Brenda from WA

Good evening, fellow CVI families!  It’s still Monday!  We here at CVI Momifesto like to keep you on your toes.

Today I heard a quote that resonated with me.

“Anger is inevitable.  It’s what you do with it that counts.”

This quote made me think of the CVI moms who are organizing and moving mountains for their children.

Jasper’s mom, Brenda, is getting a lot done with her anger.  I salute her.

If you have done any research on cortical visual impairment online or on social media, you have probably found the blog Start Seeing CVI and the companion Facebook page.  You may have heard about a CVI Advocacy Call recently hosted by the American Foundation for the Blind – the first national conference on advocacy for children with cortical visual impairment.  (Editor’s sidenote:  This call was a big dang deal.)

If you were on Facebook this month you may have seen this –

April is CVI Literacy
Image reads April is CVI Literacy Awareness Month

You may also have run across pictures of remarkably attractive children and their mothers wearing this t-shirt.

brenda's t-shrit

Image:  Black t-shirt with Start Seeing CVI and the 10 CVI characteristics

And, what if I told you all of these amazing efforts were the result of one dynamic, unstoppable mom?

Yes, it’s Jasper’s mom, Brenda from Washington.  She graciously answered questions I asked her about Start Seeing CVI, the motive behind the famous t-shirt, and just how she was able to make April CVI Literacy Awareness Month and September CVI Awareness Month.

————————————————————————————————–

Why I started Start Seeing CVI

When you are raising a child who has cortical visual impairment (CVI), the lack of awareness, and education, and knowledge of CVI is one of the hardest lessons. My son Jasper was diagnosed with “cortical blindness” at one week old. The birth to three experience was spent learning about CVI and explaining it to his many providers. For a short time, as a baby, he had a “vision educator,” who was trained to identify a vision issue and knew a little about CVI but not nearly enough. Through birth to three years, my son never had a regular teacher of the visually impaired (TVI), and we live in a major city, Seattle. In a way, it was better, because his early intervention team was willing to learn and listen to me and there was no TVI ego to contend with. That changed with his transition to the public school system.

The original Start Seeing CVI t-shirt was created in 2014 during Jasper’s first full year of preschool. He was in Phase II CVI, as scored by Christine Roman. His TVI did not want to make any modifications to materials to give visual access to my son with CVI. It did not help that the young special education teacher backed him up. When doing anything with Jasper, you have to think of his cortical visual impairment first. You have to think about the CVI ten characteristics first. How could the school team not see that? And how could I get them to think about his CVI? Do I need to send to him to school with a note pinned to his shirt every day?

And so I created the t-shirt. How could they miss it now?

Jasper's t

Image:  A boy lying down with his arms covering his face wearing a Start Seeing CVI t-shirt

The Start Seeing CVI blog came a little later, from that same place. It evolved from my original blog – writing about the experience of raising a child with special needs – to writing increasingly about having a child with cortical visual impairment.

Nobody knows about CVI because nobody is talking about CVI.  Nobody is talking about our kids.

Look around, on social media, nobody is talking about CVI. You can find Helen Keller quotes and Braille topics by the dozen, but nothing on CVI. No CVI graphics or quotes or memes. The organizations that serve students who are blind and visually impaired, and are supposed to serve our kids with CVI too, are not talking about CVI. American Printing House for the Blind (APH) is a good example. To look at social media, at a place like APH, you would think that most people who are blind or visually impaired are Braille readers. But the reality is more like five to six percent. Cortical visual impairment is the leading cause of visual impairment in our kids; they comprise the biggest portion of the demographic. But nobody is talking about our kids with CVI.

Perkins School for the Blind is talking about CVI and asking the critical question, What more can we be doing for students with CVI? And that is likely due to a few things, including their relationship with Christine Roman.

CVI has been around for a few decades now, you can find it in the medical literature as far back as the early 1990s. Nobody knows about cortical visual impairment because nobody is talking about cortical visual impairment. I wanted to change that.

As I travelled around, attending CVI conferences and trainings and workshops (I do not take vacations) and meeting other parents, our stories were the same. My child’s providers have not heard of CVI. My child’s providers do not know enough about CVI. My child’s TVI is not knowledgeable about CVI. It was not just my experience, it was the universal experience of CVI parents all across the country. I hoped that writing about CVI, and writing about Jasper, might bring both better understanding and awareness of CVI.

There is also so much misinformation out there around CVI.

Especially some of the online groups that are supposed to be about support, I avoid them. Even some websites or CVI “fact sheets,” if you happen to be given one. It is so important that CVI parents have information, but it is even more important that the information be accurate.

Not everybody out there who is teaching you about CVI is qualified to do so. Stick with the experts, not the people who are trying to sell you something. Providing accurate information and resources is a huge priority on my blog. I have no interest in debates around cerebral vs cortical.  It is an old argument and does not serve my son, or any family trying to get support for their child with CVI.

Why & how I was able to create two months of awareness 

(“Not 1 CVI Awareness Month…2 CVI Awareness Months!” – CVI Momifesto )

Since fall I had been trying to find a home for a CVI advocacy conference call. There were about six different conversations going on, with different people, parents, providers, and I wanted to get everybody together and on the same page.

American Foundation for the Blind (AFB) was willing to take a chance, and last month, in March, was the first ever national teleconference on improving education services for students with CVI.

Awareness and education and knowledge need to increase across the board – from diagnosis, to early intervention services, to public school, neurologists, occupational therapists, ophthalmologists, orientation and mobility specialists, pediatricians, physical therapists, special educators, speech language pathologists, and teachers of the visually impaired.

It has got to start with the university teacher preparation programs. I say that as a person who was enrolled in such a program, and they were not teaching cortical visual impairment or the CVI Range.

My son’s diagnosis of CVI is not optional, and teaching CVI is not optional.

On the AFB call, the universities made a lot of excuses, and yet the University of Massachusetts Boston is teaching CVI, and the CVI Range, and has a dedicated and required courses on CVI. So it is possible. My son deserves providers who are proficient in CVI, and so does every other child with CVI. And it has got to be somebody who will be at the IEP table. Our kids not only deserve this, they have a right to it.

jan

At the same time, we are focused on APH. In January, APH posted on its social media account about their plans to “Make Big Things Happen” this year for students who are blind or visually impaired. And there was not one word about cortical visual impairmemt, and how they would “Make Big Things Happen” for students with CVI. I almost let it go – but instead I commented, What about our kids with CVI, you won’t even make the CVi Connect app a quota fund product for them. My comment did not go unnoticed. In a short time, MaryAnne Roberto commented from Pennsylvania, and Gunjan from Pennsylvania, and Anna from Ohio, and Riley from Oregon, and Rachel from Maryland, and Rebecca from Virginia. The comments from CVI moms kept coming.

A group of us came together around that experience. We are committed to improving things for our children with CVI. We are raising our parent voices on behalf of our kids.

And this is just the beginning.

If you are a parent or provider of a child with CVI and want to lend your voice, you can go to Start Seeing CVI Advocacy or the Start Seeing CVI Facebook page to learn more.

Jasper

Image:  A smiling boy in glasses and wearing a hat with a wide brim and striped shirt.

 

Thank you, Brenda and Jasper!  Thank you, Brenda for your courage and your tenacity. 

Death by IEP / Why formal assessments do NOT work for CVI children or other children with sensory loss

I posted recently on my frustration with the “formal” assessments therapists and educators have tried to use on my daughter over the years.  (The long winded post, Death by IEP / Assessments and Access, has great quotes from experts in the field about the problems with assessments geared toward children with typical vision and hearing.) 

I learned early on in Eliza’s life to politely tell evaluators where they could put the assessments which would inevitably result in a grim column of zeroes or checkmarked boxes of “no”.  Right back in their briefcases, of course.  Ahem.

(I call dibs on “Grim column of zeroes” for a band name.  “Checkmarked boxes of no” sounds like the world’s worst cereal.  Nothing like the flavor of failure to start the day.)

The grim column of zeroes represents the failure of formal assessments to accurately gauge the abilities of children with sensory loss.  It does not reflect their capacity to learn.   It literally means nothing. 

This has been a topic of conversation for CVI moms on Facebook recently.  Probably because it is IEP season and we are all hunting resources for appropriate IEP goals for our kids.  I am personally working on IEP goals that have higher expectations for my non-verbal kid who will wrap you around her finger with her cuteness, a method of sailing through life that has served her well so far.

IMG_0834Image:  A girl smiling broadly swings at the park.

By asking around about the problem of assessments, it was suggested to me that I look into the work of Dr. Jan van Dijk.  I thought I would pass along what I found.

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From Perkins eLearning: In the early 1960s, Dr. Jan van Dijk of the Netherlands was asked to assess children with sensory impairments and multiple disabilities.

He found that existing assessment tools were not useful because they assumed that the children had been exposed to typical experiences; and he felt that children with sensory impairments and multiple disabilities, due to the very nature of their impairments, had not had the opportunity to experience the world in a typical manner.

Dr. van Dijk dedicated his 50-year career to helping children who have multiple disabilities in addition to deafblindness. His child-guided strategies are recognized and used throughout the world.

What is child-guided assessment?

Child-guided assessment is a procedure to bring the best of the child to the surface.
Children with multiple disabilities live in a fragmented world, often full of stress and anxiety.
The assessor wants to meet the child within this very peculiar world, to discover how learning in its broadest sense takes place. He tries to resonate with the child’s behavior by following the child’s lead.
When the child feels that he is controlling the situation, it is likely that he will open up and will follow the assessor’s suggestions for finding undiscovered paths for learning and emotional stability.

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I watched one of Dr. van Dijk’s webcasts yesterday.

http://www.perkinselearning.org/videos/webcast/child-guided-assessment

In my humble opinion, this is 29 minutes CVI moms need to watch to better understand why formal assessments don’t work and how to explain this to IEP teams.  Dr. Jan van Dijk (who died last year) was an expert on working with children with multiple disabilities.  And, as one CVI mom said to me recently, “CVI doesn’t stand alone.”

I felt as though I understood my complicated kid better after watching it.  It’s important information and gives a glimpse into the way to reach our children.

Also, it’s fun to listen to Dr. van Dijk’s accent.  (I am easily amused. Or, just weird after seeing one too many grim column of zeroes.) 

If you get a chance to check it out, let me know what you think.  I’d love to know if you found this information helpful and if it helps you make progress with your child’s team.

Thank you!

 

 

 

 

 

Adventures in Advocacy / DC + MD AER Conference

It’s been a busy couple of weeks here at CVI Momifesto. Spring is conference season.  Time for the experts in everything  to get together in quaint or exotic places to compare notes, to share their research, and, maybe to learn a new trick or two.

It’s been a great conference season in terms of building momentum and raising awareness about the learning needs of children with CVI. Needs that continue to be unmet in most educational settings across the country.

(Then, it’s Spring Break, and all bets are off for writing any blog posts as your children run amok in your house demanding to be fed, nurtured, and challenged at board games.  But I digress.)

So far this year, CVI was a hot topic at the American Association for Pediatric Ophthalmology and Strabismus.  Also, several AER conferences admitted presentations by educators and parents about Cortical Visual Impairment.  The  Northeast AER conference included presentations on CVI (from Dr. Christine Roman-Lantzy, Ellen Mazel, and Peg Palmer among others) in each slot in their schedule.  Virginia AER had several presentations including a parent’s perspective on the challenges of getting a Free and Appropriate Public Education (FAPE) for a child with CVI.

At the Pacific Northwest AER conference, MaryAnne Roberto, a CVI Endorsed Teacher of the Visually Impaired (Envision CVI Consulting), presented on Current Trends in CVI to standing room only crowds.

On March 15th, this CVI mom drove to St. Michael’s in Maryland for the DC / Maryland AER Conference to reach out to Teachers of the Visually Impaired and Certified Orientation and Mobility Specialists.   Thanks to Karen Frank and the AER folks who allowed me the chance to talk up the urgent need for educators to get more training to help children with CVI build functional vision.

 

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Image: Rob Hair,  Michelle Horseman, and Karen Frank from the Maryland School for the Blind
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Image: Dr. Michael Bina from the Maryland School for the Blind and Rebecca Davis

The Executive Director of AER, Lou Tutt, attended this conference and sat in on my presentation.  When I suggested to the audience of teachers that they contact AER to tell them they support more training for TVI in Cortical Visual Impairment, I didn’t have to give Mr. Tutt’s email address.  I just said, “There he is.”   He was a great sport about it.

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Image:  Lou Tutt and Rebecca Davis

If you have any luck sharing your stories at a conference or a meeting of educators or doctors (or legislators… or anyone who will listen), send us your story!  CVI Momifesto would love to expand the scope of both personal stories and adventures in advocacy.

Moms on Monday # 18 / Lacey from MA

Good morning fellow families of delicate chubby cheeked children who happen to have Cortical Visual Impairment,

This morning’s Mom on Monday is Savannah’s mom, Lacey.  Savannah is leading her mom on a journey of joy, challenges, and education.

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Sweet Savannah Mae is my little six year old blessing. Oh, how I love everything about her. My journey in life is led by a little girl. She is paving the way. She is my tiny little teacher.

savannah

Image:  A smiling young girl in glasses

It’s been six years since Savannah was diagnosed with cortical visual impairment. That day will forever be stamped in my heart. Savannah was diagnosed with cortical visual impairment at 8 months old. Before the diagnosis, I will never forget her six month appointment at our local ophthalmologist. We had been referred by Early Intervention because as our early interventionist put it, “It’s like the lights are on and nobody is home.” Yikes!! I’ll tell you I’m a lot stronger now and I would never stand for that insensitivity, ever. That was a different time and a fragile place so I just went along with the referral.

Our local ophthalmologist had real vision concerns and wanted to refer her to a specialist in Boston. Savannah had a normal eye exam but he thought she might be blind. But wait, she sees her spoon coming and opens her mouth for food and she loves to look at the mirror above her infant swing. She can see. She loves to look at the overhead lights and she knows exactly where they are, even if the lights are off. It went as far as her dad and me calling our overhead lights, “her friends”. Due to her hydrocephalus, I always thought her eyes were just a bit different. They were aligned by this age, at least mostly, and not in the sun setting position due to hydrocephalus. Little did I know at that time.

It had already been a busy eight months, six weeks spent in the NICU and the appointments that followed, all while try to juggle work as a “medical mama”. My little warrior girl had brain surgery at one day shy of one month. Our schedule was filled with appointments, follow up, and just maintaining her overall care. On February 1st, 2012, her dad and I arrived at Boston Children’s Hospital. When our appointment started, Savannah was brought into a room for a preferential looking test (PLT). This is a visual acuity test for young or nonverbal children. Black and white stripes are presented and as they get thinner, an evaluator will determine if the child is looking towards the striped pattern. They use the stripes as an acuity measure which is calculated based on the size of the stripes the child can locate.

Next was a VEP, also known as a visually evoked potential. This test records electrical activity in the vision portion of the brain. The patient is positioned in front of a computer screen with electrodes strategically placed on the patient’s head.  The computer screen is a black and white checkerboard pattern.  This test evaluates vision functioning in the retina-to-brain nerve pathway.  Ophthalmologists might use this as a tool when considering the diagnosis of Cortical Visual Impairment (CVI). Not all children with suspected CVI have this as an option but we are fortunate enough to live in an area with advanced medical care.

Following testing, we met with a highly recommended ophthalmologist. She told us that our daughter was legally blind. She has “cortical visual impairment.” She told us, “We will register with Massachusetts Commission for the Blind and with Perkins School for the Blind.”  I tried listening but all I heard was BLIND, not truly knowing the definition, not truly understanding how this could be. She had already been through so much in her short life.

The visit concluded with a prescription for glasses. Savannah was prescribed glasses due to her astigmatism and because she was farsighted. She was getting glasses!! At eight months!! I couldn’t decide to dance in excitement with the thrill of a new accessory or cry because she was a baby and I didn’t know a single baby that wore glasses. I do have to admit she looked adorable in her first frames that were entirely too large for her delicate chubby face.

sav baby

Image:  An infant wearing glasses

The ride home was rough and filled with tears. Mark drove, as I couldn’t contain my tears. I called my mom to tell her and I couldn’t even get out a word because I was crying so hard. As we pulled into our narrow drive, Mark’s emotions were also evident as he hit the side of the neighbor’s house. It was devastating for both of us to get this type of news. The tears continued for a week. And then suddenly, I decided to embrace my journey.

A little more about my sweet little girl. My love for her is something fierce. We share a special bond. She has defined me into who I am today. She is a happy but feisty little girl. She smiles with her entire body, especially to the tune of a xylophone. She fills every crevice of my human body with joy.
My life with Savannah has always seemed complex but normal. It’s my normal. It’s everything I know about motherhood. It is 100% normal to us, even when it might not seem normal to others.

At birth, Savannah suffered a grade 4 brain bleed, periventricular leukomalacia suggestive of hypoxic ischemic injury. Savannah has a diagnosis of hydrocephalus and had a VP shunt placed one day shy of a month old. At almost five years of age, Savannah was diagnosed with Ogden Syndrome, an extremely rare syndrome also known as a Naa10 mutation. I mean, she is a diamond in the rough. And this kid sparkles. Savannah is one of 18 in the world with her exact mutation and 1 of 29 with a variation of the Naa10 mutation at this current time.

But let’s get back to her vision. I remember reading Little Bear Sees, which I highly recommend to any parent of a child with CVI. I remember thinking by her current age she would have near normal vision. We are part of the CVI endorsement so I can’t talk about phases and scores but I can tell you, any child with CVI faces many obstacles. Her vision is anything but typical, but it is what she knows and what we know for her. We are working hard to help decrease the frustration that comes with low vision and nonverbal communication. Along with her vision, Savannah is equally as complex. At this current time, she is not sitting, walking, or talking.

She is happy and loved fiercely.
That is what matters most to me as her mommy.

As a mom, I’m hopeful. I TRY to put the best interventions in place. Savannah continues to make visual progress, especially if food and beverage are involved. She is great at locating objects in her environment using her peripheral fields. I am working hard, as her mom and her advocate, to help her start using her central vision. Her team at school is also working toward this goal. Savannah knows some routines, and she continues to make strides in every area of development. She is an amazing little girl and I am so blessed to be on this journey in life with my sweet Savannah Mae.

sav with blocks

Image:  A little girl in glasses playing with yellow blocks on a lightbox

Savannah has really inspired me to be the best I can be for her. This journey we are on led me to graduate school. I completed my Masters in Education and I now work as a TVI with the youngest children. I am also very close to becoming CVI endorsed. I absolutely love helping children learn to use their vision but also supporting their families during this fragile time.

Savannah has improved in every aspect of her life but she is on her own chart, in every single way. I once read from a blog I follow of another child with CVI, “she is just inching along”. This is a phrase I like to use now.  Milestones are just so big and inchstones are much more appropriate.

Another mom in my Naa10 group wrote an article and hands down my favorite quote, “It’s like raising a giant question mark!” Yes, it totally is!!!

Thank you Lacey and Savannah Mae, this beautiful one-in-a-million girl! Your journey together is helping other families who face similar challenges.  

 

 

 

 

Moms on Monday #17 / Maggie from PA

Good morning!

Today’s Mom on Monday is Will’s mom, Maggie.   Will has a smile that will brighten your day.  Maggie has experience, wisdom to share and a “can-do” spirit that has taken them all over the country.  

Introduction:   Maggie, mom of Will, age 9. We live in Feasterville, Bucks County, a suburb of northeast Philadelphia, Pennsylvania.

What does Will like to do?  What makes him laugh?  What are his favorite activities?  What do you do as a family? 

Will is a very happy, very social, very adorable redhead who has a smile that makes you smile when you see it. If you get him giggling you are certain to laugh, too. He has always loved music. I remember him lying on the hospital bed the day after he was born, all bundled and ready to make our journey home. Only his face was exposed. I put my face close to him and quietly sang “Somewhere over the Rainbow” to him. He quieted and just “stared” at me while I sang. From then, whenever he is fussing or restless, he will still quiet, or calm, when I sing to him.
We also loves water. He is very discerning though because the water must be warm. He wears his life jacket and we put ankle weights on, which allows him to bob in the water upright. He loves the freedom of kicking and moving in the water.

will in pool

Image:  Will in a life jacket with his dad in a pool

Another activity we do is traveling! This boy is very well-traveled. We estimate that he has visited 16 states and DC.  He has traveled coast to coast and north to south on around 2 dozen flights in his action-packed 9 years. We decided early on that we would not let his challenges keep him from experiencing his world. He is a great traveler both by car or plane.

willImage:  Will, a smiling red haired boy

We travel with Will’s stuffed friend, Cordy Roy, who gets a photo shoot at every location we travel to.

will bedford countyImage:  Will’s stuffed toy, Cordy Roy, next to a Bedford County sign

will in van

Image:  Smiling Will in a wheelchair in a van

When did you first learn about CVI? How were you given the diagnosis?

We knew something was wrong when Will was about 1-month-old.  He wasn’t tracking us with his eyes and he wasn’t smiling in response to our facial expressions.  He had an unfocused stare.  Not long after, we began our journey of discovery.  After several tests, we found ourselves at the neuro-ophthalmologist at CHOP who gave us the official diagnosis of CVI.  We were fortunate that he was diagnosed very early without any resistance from our neuro-ophthalmologist.

We began consulting with Dr. Roman early. We started seeing her every 6 months for a few years. Now we visit her annually. So, we were luckier than many and have known about CVI for a long time.

How was Will’s early intervention experience with regard to CVI?

We already had begun learning about what CVI meant through our early intervention TVI, MaryAnne Roberto.   We were so fortunate that she was assigned to Will and had a lot of knowledge about CVI.  She pointed out Will’s behaviors that supported the diagnosis.  She helped us create an environment that accessed Will’s vision. She was also instrumental in linking us to Dr. Roman in Pittsburgh.  We started seeing her every 6 months for a few years.  Now we visit her annually. With our neuro-ophthalmologist, MaryAnne, and Dr. Roman, our knowledge of CVI and the world of accommodations began.

will with rl

Image:  Will with Dr. Roman-Lantzy and his dad

Does Will have other diagnoses you’d like to mention? 

Will lived in the land of “undiagnosed” for the first 5 years.  We had many diagnoses – global developmental delay, seizure disorder, failure to thrive requiring a feeding tube, non-verbal, non-ambulatory, CVI, hypotonia, microcephaly, cataracts – but no overarching name of the cause.

Genetic testing in first year was inconclusive.  When he was 5, we decided to revisit genetic testing.  In March of 2014, we received the call that our son has a rare genetic disorder called FOXG1syndrome.

FOXG1 syndrome is a spontaneous genetic mutation that affects approximately 300 children in the world.  Neither Will’s father nor I have this error, but when we looked at the characteristics of the syndrome – love of water, love of music, CVI, feeding issues, seizures – Will’s picture could have been posted next to the definition.   A diagnosis at last!

It did not change our interventions, but it did give us a group of parents who are also living with the consequences of FOXG1.

How is CVI being addressed in Will’s school setting? 

CVI in school has been a different story from our early intervention experience.  Our early intervention team embraced the CVI interventions that MaryAnne shared so generously.  It hasn’t been so easy in school.  The vision team is not educated in CVI.  They have been resistant to learning about it and adapting Will’s materials.  After 2 years with few adaptations and the purchase of a communication device by the school district, we have finally put our feet down and said enough is enough.  They cannot continue to work without making vision a priority.  So this year’s IEP reflects a lot of changes.  With the assistance of an advocate, we had a CVI endorsed TVI come in and complete a new CVI Range.  The score on the range revealed a loss of visual literacy.  That led to new goals and a significant increase in vision service time.  Sadly, the vision team still does not share my sense of urgency.  This is an ongoing source of friction.  It’s heartbreaking since we really want to have a better relationship with our TVI and Will’s vision team.

What would you tell a mother whose child has just been identified with CVI?  

I would say two things to other moms.

First, do not give up.  Do not despair. Your child knows your voice and your touch.  He/she knows you even though they don’t seem to acknowledge you.  With time and training, your child WILL see you.

It was a momentous day when Will looked at me and “saw” me! He now has more than 12 feet of functional vision and can most likely see farther.

The second thing I want parents to remember is to presume competence!  I have found over and over that Will surprises me with what he knows and can do!  Set the bar high, work hard, and be amazed with what your child will do!!!

What would you like for people who have never heard of CVI to know?  

Other people should know that CVI is a vision impairment that is neurologic in nature.  With time, patience, and specific interventions and accommodations, vision can be improved! If a child can achieve a certain place on the CVI Range, he/she may sight read.  If that is achieved anything is possible for that child!

What are your hopes and dreams for Will?

Our goal for Will is to be the best Will he can be!  We don’t know what that is yet, but he is still full of possibilities! We will continue to work and help him achieve his greatness!!!

red haired will!Image:  Smiling Will wearing a Start Seeing CVI t-shirt

Thank you Maggie for sharing your journey with your handsome, red haired, well traveled young man!    He IS full of possibilities!  

AAPOS 2018 / Champions and Challenges

The annual conference for Pediatric Ophthalmologists from all over America and around the world has ended.  From one mother’s perspective, volunteering at the conference was an education in itself.

CHAMPIONS

For the first time, the Pediatric Cortical Visual Impairment Society had a table in the AAPOS (American Association for Pediatric Ophthalmology and Strabismus) exhibit hall.

The Pediatric CVI Society is the one organization in America focusing on raising awareness about CVI and advocating for improvement in medical and educational outcomes for children with CVI.  It is a 501 c3 non-profit organization driven by membership and donor funding.  HINT HINT (www.pediatriccvisociety.org)

The PCVI table was around the corner from the Perkins School for the Blind table.  Perkins has become a leader in moving education about CVI forward for providers and families.  (www.perkinselearning.org/cvi)

Carol Kinlan from Perkins and I referred interested doctors to each other’s tables.  It was very encouraging to have another champion for children with CVI in the exhibit hall.  Not only is there strength in numbers, there is momentum in numbers.

And, there was yet another champion for children with CVI raising awareness and creating traffic at the PCVI and Perkins exhibit tables.

Dr. Sharon Lehman, a Pediatric Ophthalmologist from Nemours Hospital in Delaware, generated interest among the attendees with her scientific poster presentation on a survey she sent out to pediatric ophthalmologists and teachers of visually impaired.

Here is some of the information from this poster presentation.  CVI families may find this particularly interesting.

Attitudes Concerning Cortical Visual Impairment Among Pediatric Ophthalmologists and Teachers of the Visually Impaired.

METHODS

An email study was distributed to the 2 groups  via their two respective national organizations (AAPOS and AER).  The survey contained questions about the following:

Frequency of seeing children with CVI

Adequacy of education about CVI during training

Comfort with making diagnosis

Adequacy of communication from the pediatric ophthalmologist 

Comfort with making recommendations

Referral of patients for services

Interest in receiving further education about CVI

RESULTS 

The response rate for pediatric ophthalmologists was 8.0%.

The response rate for TVI was 14.8%.  

A significant gap was identified in opinion of the adequacy of communication from the pediatric ophthalmologist to the care team. 

Communication was deemed adequate by 61.9% of pediatric ophthalmologist respondents while it was considered not adequate by 68.4% of TVI respondents. 

The majority of respondents of both groups (80.5% of pediatric ophthalmologists and 85.8%  of TVI) wished to learn more about CVI.  

DISCUSSION 

The survey highlights gaps in knowledge and attitudes concerning the care of patients with CVI that limit the effectiveness of the team’s patient care.  The strong desire to learn more about CVI is a positive finding that bodes well for patients.  

The relatively low response rate (8.0% of pediatric ophthalmologists and 14.8% of TVI) is a limitation.  It may indicate that there is a core section of individuals within both provider groups interested in CVI who could develop expertise in providing services for children with CVI.  The attitudes of the nonrespondents is unknown and could be valuable in interpreting the data.  

CONCLUSION 

Lack of standardized methods for evaluation and diagnosis and for providing recommendations for children with CVI create challenges for the care team.  Improved clinical education of pediatric ophthalmologists and TVI and development of standardized tools that can provide the patient’s team with necessary information are practical ways to approach this problem.

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It was heartening to see research about CVI discussed by the medical community.  We need our pediatric ophthalmologists to acknowledge CVI and to learn what to do when they identify a child with CVI.  Dr. Lehman’s work is having a positive impact.


Challenges remain.

Here is what I heard from the majority of doctors who came to the PCVI Society table to get more information and resources for their patients and to join the email list.

I see so many of these kids in my office.

I get so many of these kids.

I don’t know where to send them.  

I don’t know what to give them.

CVI is scary.  

I don’t know what to do with it.”

I am glad these doctors were willing to approach the PCVI Society table, and to admit that they need more information.  I am glad that this year these doctors left with a list of resources and take away information about how to diagnose CVI.

Bravo to the doctors who are seeking out new information and who are not afraid to admit that they have more to learn.  Bravo to the doctors who are seeking out a community for their patients.  They are championing children with CVI as well.  Someone should bake pies for these people!


Encouraging education and debate about Cortical Visual Impairment (Cerebral Visual Impairment, Neurological Visual Impairment, Rumplestiltskin – whatever term we are using today) is critical to the common goal of getting our children diagnosed more quickly and accurately.

To this mother’s untrained eye, it seems as though, until recently, when conversation about CVI turned into debate about which word follows the “C” – Cortical or Cerebral – the debate stopped.  The opposing sides retreated to their camps and dug in until further notice.

This unyielding approach (from the jaded and sleep deprived eye of a mother who sat through too many hours of unsuccessful IEP meetings, so consider the source) does a disservice to doctors, teachers, families, and most importantly, children.

This approach has left many children sitting in classrooms without access to their educational environments. This approach has left many confused parents piecing together information from competing (?) sources in their individual attempts to educate the uninformed doctors and teachers in their child’s life.   This “approach” is not an approach at all.   It is static and unproductive.

Now on many fronts there is a willingness for an open exchange of ideas and research.  Much of this openness has been fueled by the urgency of families who will wait no longer.

Every presentation, every poster, every question asked at an exhibit table brings us closer to our common goal.

Let’s keep our lines of communication open with our pediatric ophthalmologists and pediatric neuro-ophthalmologists.  Next time you see your child’s doctor, you can mention the AAPOS conference.  You can tell your doctor that CVI is becoming a hot topic and – just a thought – that you’d like your doctor to participate in the conversation.   Even better, you two can have your own conversation.

lehman pcvi

Image:  Dr. Sharon Lehman and Rebecca Davis standing in front of the exhibit table for the PCVI Society at AAPOS 2018

 

P.S. The conference hall NEVER got warmer or brighter.  I decided the architect of the Washington Hilton was just a huge science fiction fan.  (It is possible I had some time on my hands for random speculation while sitting and freezing at the table.)  

 

 

 

 

 

Adventure in Advocacy / AAPOS 2018

Good morning fellow families of wonderful children who happen to have Cortical Visual Impairment,

I’m sitting in the Cabinet room which is technically a conference hall of the Washington Hilton Hotel.  I am the responsible adult for the Pediatric CVI Society’s very first exhibit table.

How fitting that this event should occur at the annual conference of the American Academy of Pediatric Ophthalmology and Strabismus.  

Pediatric Ophthalmologists!  Maybe there’s a Pediatric Neuro-Ophthalmologist thrown in here somewhere.  I’ll have to ask.

This is important because it remains difficult for families of children newly identified with Cortical Visual Impairment to receive an actual diagnosis of CVI.

This is important because even if a doctor does diagnose CVI, she or he may not realize that CVI can improve with the appropriate interventions.   She or he may not realize that education – for children, parents, caregivers, therapists, and teachers – is the key to improving a child’s functional vision.

They can’t fix CVI.  So, many of them don’t address it.   They are not SEEING CVI.  (That one’s for you, Brenda Biernat. I’m wearing the shirt!)


This is the year, the PCVI Society begins to change the landscape of CVI in the medical community.

We have actual conference materials.

pcvi table.png

Image;  An exhibit table covered by a black tablecloth and white drape with PCVI in large letters.  Other exhibit materials promoting the PCVI Society.
alien-conference-hall.png
Image:  A low lit ceiling which may also be the inside of a alien ship.  I just report ’em like I see ’em.

I have to mention that when CVI Mom Rachel and I were setting up yesterday, it was weirdly dark in here. There’s an alien/cave vibe happening. I thought for sure they’d turn up the lights for the actual conference. Not yet.  We may take off any moment now for the general cosmos.

We have swag – Diagnosis cards and hard candy. (If that wasn’t the name of a punk band in the late 70’s, it should have been.) 

hard candy

Image:  A gift box with candy spilling out on to a table covered by a black tablecloth.

 

We will see how I do here after 3 days.  Maybe the low lighting is a deliberate move to calm the well documented frantic energy of pediatric ophthalmologists.

Carol Kinlan of the Perkins School for the Blind just came over to say hi.

Will keep you posted.

Adventures in Advocacy / AFB’s Advocacy Call to Improve Special Education for Children with CVI

It happened!  History was made!

Yesterday evening, March 14th, at 8:30, the American Foundation for the Blind hosted a panel of parents, educators, TVI, administrators of teacher training programs, and advocates to engage in a “spirited” national conversation concerning Special Education of Children & Youth with CVI.  (I am deliberately using the initials CVI since AFB referred to the diagnosis as “Cortical Visual Impairment – what others refer to as cerebral visual impairment, and still others describe as neurological visual impairment.”)

Our moderator, Mark Richert, Esq., diplomatically came up with the following title for the call:

CVI = Consensus, Vision, and Initiative 

As a parent, I have said before and I will say it again. I do not care what you call this diagnosis.  You can call it, “Harold,” or “Pearl,” or “Jeff.”  This attitude may seem flippant to researchers and educators and it is.  CVI has lorded over our lives for over a decade and I’m not great with authority figures.

I care about finding the teaching methods that give my daughter (what?….Say it with me, folks!)  ACCESS to her environment.

climb-on-bus.pngImage:  A child wearing a backpack climbs on a school bus

My dream is that one day my daughter will get on a bus and go to a school where the teachers know more about CVI than I do.  My dream is that one day I won’t have to worry about what is happening at school all day.

Is this likely to happen anytime soon? No, it is not likely to happen anytime soon.

But, I have to try.  For Eliza.  For every other child.  For every other mom.  I believe I can say the same for the other parents who are advocating in their personal lives and the parents who participated in last night’s call whether as a panelist or a caller.

Mark Richert gave each panelist a chance to speak.  He made every effort to give callers a chance to comment or ask questions.   This turned out to be a bigger task than expected as AFB had nearly 200 people call in.  I don’t have the exact numbers but at last count we heard the AFB folks say 175 people wanted to participate in the call, both panelists and callers.


 

The panelists included:

Brenda Biernat – CVI Parent, Advocate, and Founder of StartSeeingCVI.com (and the mom who reached out to AFB to make this call happen.  Bravo!)

Rebecca Davis – CVI Parent, Advocate, Member of the Pediatric Cortical Visual Impairment Society & Blogger at CVI Momifesto

Sandra Lewis, Ed.D – Coordinator and Professor, Visual Disabilities Program, Florida State University

Amanda Lueck, Ph.D – Professor Emerita in Special Education, San Francisco State University

Rona Pogrund, Ph.D – Professor and Coordinator of Programs for Teachers of Students with Visual Impairments, Texas Tech University

Dorinda Rife, CLVT, COMS – Vice President, Educational Services and Product Development, American Printing House for the Blind

Christine Roman-Lantzy, Ph.D – Director, Pediatric View Program, Western Pennsylvania Hospital

Diane Sheline, TVI, CLVT – Independent Consultant for Students with Cerebral/Cortical Visual Impairment

Alisha Waugh, COMS – CVI Parent and Physical Therapist


 

It was a passionate conversation.  I, for one, appreciated the fact that the professionals in the field of educating children who are blind or visually impaired were willing to listen to us and to each other.

Listening is an important first step.

We parents do have a lot to say.  We have been waiting a long time for Cortical Visual Impairment to be taken seriously in the educational community.  Many of us have stories about the CVI Range.  We have stories about what we have learned by studying the work of Dr. Christine Roman-Lantzy and how it has changed our children’s lives for the better.  We have stories of daily struggles and challenges, confusion and tears, low expectations for our children’s cognitive abilities, and lack of access to visual information being interpreted as “behavior issues.”

It is still hard for me to believe that despite Cortical  Visual Impairment being the #1 pediatric visual impairment in first world countries, there remains so little consensus on how to educate these children.

It is time for things to change.

If, as Mark Richert and AFB have stated –

“Successful advocacy requires at least 3 key elements:

consensus about the problems and solutions,

a shared vision among stakeholders regarding the desired outcome,

and initiative on the part of committed change agents who are willing to play a long game while achieving milestones along the way” –

Then, yesterday’s conversation revealed a common concern for the education of children with CVI and parents revealed themselves as committed change agents extraordinaire.  

What a great t-shirt idea!  (AFB, I get 10% of net sales.) 

I’m in for the long game, just don’t tell  my daughter or she will make me play Monopoly.  No one deserves that.

Stay tuned!

 

Moms on Monday #16 / Dixie from KY

Good morning fellow families of lovable children who have Cortical Visual Impairment!

This morning’s Mom on Monday is Olivia’s mom, Dixie, from Kentucky.  Dixie is a Teacher of the Visually Impaired for Visually Impaired Preschool Services (VIPS) in Kentucky.  She provides early intervention to infants and toddlers with ocular visual impairments or Cortical Visual Impairment.  She also provides support to their families who often struggle to understand their children’s diagnoses.  Dixie has the unique perspective of experiencing a CVI diagnosis as a mother and of guiding other parents through their CVI experiences as an educator.   She was kind enough to take time out of her schedule to speak to me while driving home from vacation.  

IMG_20180225_182714209Image:  A smiling young girl and a woman in glasses.

What does Olivia like to do?  What makes her laugh?  What are some of her favorite things? Olivia is almost 14 years old and enjoys the things most teenagers enjoy.  She loves watching movies and TV.  Her favorite foods include hamburgers and spaghetti. She is not a fan of fruits or vegetables.  Olivia loves gymnastics and tumbling.  She loves playing outside.  She loves her dog.  She has a huge sense of humor.  She is always smiling or giggling about something.  IMG_20170904_153045146

When did Olivia join your family?  I had started providing foster care and was working as a Developmental Interventionist for First Steps (Kentucky’s early intervention system). Olivia’s biological mother was a drug addict.  At 2 months old, Olivia had been rushed to the ER because of malfunctioning valves in her heart.  She was pronounced dead at the hospital, but was resuscitated.  She experienced oxygen deprivation during all of this. Afterward, Olivia entered foster care and was staying with a foster parent who was a friend of mine.  They were waiting until Olivia was 6 months old to be able to perform surgery to fix the valves.  My mentor kept telling me, “Your daughter is down the street.”  I met her 10 days before surgery and fell in love with her.  The adoption was finalized when she was 9 months old.

How was Olivia’s early intervention experience?  We knew there was some brain damage because of her other diagnoses, Down syndrome and Fetal Alcohol Syndrome, and heart failure. We did not know the impact it would have. Olivia rolled over at a typical age of 3 months, but she lost skills as a result of the surgery.  At 9 months old, we started over.  She essentially lost a year of her life at the beginning.  She had developmental intervention, speech therapy,  and occupational therapy.  Olivia always loved to look at books in her developmental therapy.  When she was a baby, she would watch Baby Einstein videos.  CVI did not occur to me.

When did you first learn about CVI?  I knew her vision was off. Over the years, we went to 3 or 4 different eye doctors. When she started kindergarten, they said she was a little farsighted.  They said Olivia needed glasses, that all children with Down syndrome need glasses.  Then, they said she needed bifocals, but she just kept looking over the top of them.

By this time, I was working as a Teacher of the Visually Impaired for VIPS.  I asked for a Functional Vision Assessment at school. The school refused saying there was no diagnosis of legal blindness.

We went to Cincinnati Children’s Hospital and saw Dr. Robert North.  He referred us to the Cincinnati Association of the Blind to do a Functional Vision Assessment.  When they began testing, they started making modifications for CVI without explaining what the modifications were for.  I recognized what they were doing, watched her respond, and realized that she had CVI.

Then, the lightbulbs started going off. I started to think about times when she was smaller and behaviors I did not understand.

Olivia had bad nystagmus as a baby.  She never crawled outside of the living room except for one time when I was vacuuming.   She ventured out to follow the vacuum all over the house.  Until then, she would not go out of the living room  – the familiar environment she knew.

How were you given the diagnosis? The Cincinnati Association of the Blind sent their report to Dr. North at Cincinnati Children’s Hospital.  He gave us the diagnosis.  He was the first doctor we had seen who took the time to look at Olivia’s history and not blow us off.

How has CVI been addressed in Olivia’s school setting? When we came back with Dr. North’s diagnosis of CVI, she automatically qualified for vision services and federal quota funding.

Despite our trip to Cincinnati Children’s Hospital and our prescription from Dr. North, the school’s TVI informed me that Olivia didn’t have CVI.  The TVI announced that Olivia was colorblind.

I told her, “You’re not an eye doctor.”

I had not told the school system that I was a Teacher of the Visually Impaired and that I was aware of the laws that regulated education for children with visual impairments.

I provided the first lightbox to Olivia’s school.  I borrowed it from VIPS.  As soon as they figured out it was working, they ordered one for their school.

It had taken a year to get the CVI diagnosis and to get the school system to recognize that Olivia was visually impaired.  By the first day of school in 1st grade, she qualified for “vision services,”  but I don’t know how much vision support she got.

We eventually went to see Dr. Roman because Olivia was in Phase III and folks didn’t know what to do with the higher levels of CVI.  Dr. Roman helped me realize that some of Olivia’s communication delays were really related to CVI.   She would often mix up the pronouns “him” and “her.” Olivia would sometimes look at a girl with short hair and say “him.” Dr. Roman explained that it is hard for children with CVI to figure out the details that define people and their gender.

Her school experience at the time was frustrating.  For 2 years, she had the same list of 15 sight words because she wasn’t learning all of them.  We lost a lot of time with this because the school didn’t realize that a word has to have meaning to Olivia for her to learn and to recognize them.

She learned words like “mom” and “dog” because she has a mom and a dog in her life.

Little words like “a,” “an,” and “the” don’t have meaning.  “It” was on the list.  How do you define “it”?  “This?”  How do you explain the word “This?”  And, you don’t really need the word “The.”

The longest word on the list, “friend,” was the one she learned because it had meaning for her.  It had a clear definition she could understand.

In teaching reading, I started to realize that the little sight words also create visual clutter.  We started using a curriculum for whole word learning which has a lot of similarity to how Dr. Roman uses highlighting and bubbling words.  (EdMark Reading Program)

What would you tell a mom whose child has just been identified with Cortical Visual Impairment? 

Cortical Visual Impairment doesn’t stand alone.  The children with this diagnosis usually have other diagnoses.  Many of the families I work with don’t know what CVI is.  They just hear “blind.”  They don’t know CVI can improve. When the vision of a child with CVI does improve, I get the joy of seeing their families experience moments that other parents would just take for granted.

Also, trust your mother instinct.  If something doesn’t seem right to you, keep asking.  Keep advocating.

My mom often tells me that everything has a season.  Both good or bad.  When something seems really bad, it will not last forever.  Everything has a season.

It has been so important for me to have that village of people you trust and who know and understand your child.  You need a village.

What do you know now that you wish you had known? 

I definitely wish she had gotten the CVI diagnosis sooner.  We wasted a lot of time not knowing about her vision.

What would you like people who’ve never heard of CVI to know? That visual clutter is everywhere.  Complexity will never go away 100%.  I educate people on that everyday in my job.  And Phase III is hard for people to understand.  People don’t realize Olivia is visually impaired.

Every child with CVI is different.  IMG_20171224_150802713

Hopes and dreams?  I just want her to do something that allows her to be a functioning member of society.  She loves babies and animals.  I hope she can eventually get a job doing something she loves.  I want her to be happy.

 

 

Thank you Dixie for sharing your experience!   Thank you for serving families like ours.  Thank you lovely Olivia for sharing your mom with us.  

Adventures in Advocacy / Sometimes All You Have To Do Is Ask – A CVI Advocacy Win

Kathryne, mother of “Little C,” (Moms on Monday #6)  is changing how children with CVI are being educated in Louisiana.  BRAVO! 

20180216_165131Image:  A little boy sitting on a black floor and surrounded by black walls.  He wears glasses.  He is leaning forward looking at a light source with many strands of shiny red beads hanging over it.

When I asked my local university VI graduate program why their curriculum did not address CVI and how they could add education opportunities on CVI to their VI curriculum I received the response, “it is almost impossible to provide all things to all people for all purposes.” CVI is the #1 pediatric visual impairment in the US. This was followed up with how Dr. Roman’s methods are “far from accepted as the preferred model” and there are a “diversity of opinions on how these youth are best served by educational systems.” Dr. Roman has provided the only educational model.

This happened a few weeks before the NE AER Conference. The November 22 post on CVI Momifesto provided the link to AER’s website to look up our state chapters. CVI Momifesto suggested that we contact our AER Presidents and ask how we as parents can support TVI training in CVI.

Even though I found no contact information, website, or conference for my local chapter I decided to pay the dues and see where this rabbit hole led.

After joining AER I reached out to my son’s outreach therapist that Louisiana School for the Visually Impaired (LSVI) is sending out twice a month. I asked if she knew if LA AER had any workshops or conferences and how as a parent member I could become involved. I hit the Jackpot. It turns out the head of LSVI’s Outreach Department is the outgoing AER President. She called me soon after full of excitement that a parent wanted to be involved.  She was in total agreement that CVI training was needed.

All I had to do was ask to sponsor training. The next month AER approved the workshop. Louisiana will have a CVI work shop October 19, 2018, and I have extended a personal invitation to our local graduate VI program.

If you are in Louisiana and want to attend you can sign up here.

https://docs.google.com/forms/d/e/1FAIpQLSfEe__xP9Kvzow7nApx_eN8jZ6XXM7mUUe1WRrpp3m-MuNv9A/viewform?c=0&w=1&usp=mail_form_link

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Adventures in Advocacy / A CVI Mom Goes to Capitol Hill Advocacy Day 2018

Last week, I had the chance to join the American Foundation for the Blind (AFB) and CEASD (The Conference of Educational Administrators of Schools and Programs for the Deaf) in their efforts to advocate for the Cogswell-Macy Act.  Cogswell-Macy (H.R. 1120, S. 2087) is legislation named after Alice Cogswell, the deaf child who inspired Thomas Gallaudet to introduce deaf education to the United States and Anne Sullivan Macy, Helen Keller’s gifted teacher.

Why We Need the Cogswell-Macy Act

From the AFB Website:  Today’s schools are not prepared to help children who are deafblind, deaf or hard of hearing, blind, or visually impaired develop to their full potential.  (Magnify this statement times 10 for children with a brain based visual impairment such as Cortical Visual Impairment. See my earlier post titled Lego Trees and the posts under Death by IEP.) 

The Cogswell-Macy Act is the most comprehensive special education legislation for students with sensory disabilities to date.

This act seeks to expand the resources available to these students, and their parents and educators, through the Individuals with Disabilities Education Act (IDEA).

The Cogswell-Macy Act would – 

ensure specialized instruction specifically for students who are visually impaired, deafblind, or deaf or hard of hearing.
increase the availability of services and resources by ensuring all students who are deaf or hard of hearing, blind, visually impaired, or deafblind are accounted for.
enhance accountability at the state and federal levels.
increase research into best practices for teaching and evaluating students with visual impairments by establishing the Anne Sullivan Macy Center on Visual Disability and Educational Excellence—a collaborative consortium of nonprofits, higher education institutions, and other agencies to provide technical support, research assistance, and professional development.

To learn more:  http://www.afb.org/info/get-connected/take-action/12

AFB and CEASD can offer you much more detailed information about this bill.

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What I can do is give you the play by play of the novice parent advocate who lives near D.C. and wants to help.

  1.  WEAR COMFORTABLE SHOES.  Someone told me this last year.  I thought I wanted to look professional so I’ll just wear my most comfortable heels.
  2. THERE ARE NO COMFORTABLE HEELS. WAITING FOR WARNER 2017
Image:  A pair of  black shoes with heels and a binder with pictures of a child on the cover

I call this photo “Waiting for Senator Warner 2017.”  By this time of day (early afternoon), I was already barefoot in a Senate building and sporting some impressive blisters.

3. DO NOT WEAR HEELS.  Did you not hear me the first time?  I know, I know.  It’s the Capitol and the heart of our democracy, but seriously.  Look around, everyone who works there wears tennis shoes or flats to run from building to building.  They must keep their uncomfortable grown up shoes in their offices.

4. When you feel smug about how early you got up to drive to the Metro and catch a train to go into D.C., don’t.  I got to our local Metro station in ample time to catch a train to be at the Advocacy Training by 8:30 a.m. And, the train was “delayed.” I waited. Annnnnd, after 20 minutes the status of the train was now  “suspended.”
And, I ran back to the parking garage (Vienna Metro owes me $5) and drove to D.C. See where the shoes come in?

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Image:  My view of Northern Virginia traffic from the windshield of my car

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Image:  The dome of the Capitol building in the distance taken from a side street

5. When you see the Capitol, look for parking.  And, keep looking, because the concept of public parking in D.C. is a city version of snipe hunting.  Sure, you can drive to D.C. and find easily accessible parking!  Sure, there are snipe in them there woods!  (My family hails from Kentucky so I get to use phrases like “them there woods.”  Although no one in my family has actually used the phrase “them there woods.”) 

 

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Image:  A line of people standing outside the Rayburn building in DC

 

6.  FYI – When you find parking (snipe!), you will not get even close to the government building you need to be in RIGHT NOW.  When you hustle (SHOES!) to get to that building (by now only a half an hour late), there are dozens of people lined up outside the entrance waiting to get through security.  What the heck?  It was not this hard to get in the building last year.

At least, standing in line, you have time to catch your breath, dab your sweaty forehead with a Kleenex, and curse yourself for not leaving even earlier in the morning.

Then, you get a text from Rebecca Sheffield, Senior Policy Researcher, Ph.D. from the American Foundation of the Blind. (This is just a cool sentence to type.)

The text says, “If you are still on the way can you go over to the Russell building for a meeting with Sen. Tim Kaine’s staff?”  Some of the Virginia advocates had not yet checked in.  I imagined them sitting on the same metro platform I had been waiting on.

This year, you are wearing good shoes so YES, Rebecca Sheffield!

You ask no less than 3 D.C. policefolk how to get to the Russell building.  Normally you could have cut across in front of the Capitol but the Rev. Billy Graham was lying in honor there.  There were barricades all around the building and another line of over a hundred people waiting to pay their respects.

You will pass the Supreme Court building.  There is a line to get in there as well.  D.C. is a just a buzz of activity!  You will see Boy Scouts.  You see high school students from Oakton, Virginia on a scavenger hunt.  You see Americans and tourists of all sizes, ages, and colors.  It is a beautiful power walk through D.C. in business attire.

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Image:  The Supreme Court building

You hoof it to the Russell building, one of several Senate office buildings and location of Sen. Tim Kaine’s office with roughly 8 minutes to spare.  Success!

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Image:  Outside of the Russell building

You have just enough time to dab sweat again, look over the talking points on Cogswell Macy and find Sen. Kaine’s office.  This building is a buzz of activity as well.  There are groups of teenagers, flower growers from all over America dressed in suits with brightly colored corsages pinned to their lapels, other advocates and lobbyists moving in packs with their affiliations written on badges hanging around their necks.  Everyone has folders of talking points and information to leave with staff.

For a brief moment, standing outside the office, you are nervous that you will flub something in your meeting.  You walk past well dressed teens joking around in the hallways and wonder how long it took one young man to get his part that straight.    You feel a pang of something – not regret – envy?  – because you know your own little girl will not have a moment like this.  These teenagers take in so much information about this busy place, about each other in a single second because they have normal vision.  Because they can learn incidentally.

You think about all of the students throughout the U.S. who are blind, or deaf, or deafblind. You think about all of the children with sensory loss who are misunderstood in their classrooms.  Children who lack ACCESS to their environment.  You think about your own daughter and her diagnosis of Cortical Visual Impairment – information that inevitably produces the following response:  “Huh?” – when you mention it for the first time.

You think about how many times you’ve tried to explain your daughter’s visual impairment.  How it seems as though she is not paying attention or that she cannot understand because typically sighted folks do not know what to make of a child who does not look them in the eye and who takes longer to respond.

You think about the national shortage of Teachers of the Visually Impaired and Orientation and Mobility Specialists.  You think about the lack of teachers and other providers who know what to do with a child with CVI.  There is so much work to be done to give our children a better chance to connect with the world around them, to give us a chance to reach them.  Frankly, you feel a tad overwhelmed.

You want to yell, “Oh, Senators, we need co-sponsors for Cogswell-Macy!  We need champions for children with sensory loss.  We need champions for children with CVI!”

You do not.

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Image:  Kirk Adams, a tall man with gray hair holding a cane, and Adrianna Montague, a woman in a black dress smile while standing next to a sign that reads Senator Tim Kaine of Virginia

7. You enter the senator’s office to jump into Advocacy Day (and decide to stop numbering your post that has gone on way too long and will be read by no one…).

With a flood of relief, you find Kirk Adams, the president of the American Foundation for the Blind, and Adrianna Montague, the Chief Communications and Marketing Officer for AFB, waiting for the meeting as well.

You meet with one of Sen. Kaine’s staffers, Karishma Merchant, who oversees education and other issues. Ms. Merchant is a willing audience and asks great questions.

AFB recently moved their main office from New York to Arlington, Virginia.  Mr. Adams and Ms. Montague take this opportunity to introduce AFB as a resource for Sen. Kaine’s staff and to emphasize the need for legislation like Cogswell Macy.  You get to tell her a little about the challenges children with sensory loss face in U.S. school systems.

Ms. Merchant asks your help to advocate against legislation that was introduced in the House to deregulate the Americans with Disabilities Act.

ACTION ITEM:  H.R. 620 is what supporters in the House are euphemistically calling the ADA Education and Reform Act (H.R. 620).   Don’t believe it for second.

Senator Tammy Duckworth of Illinois is leading the call to ask Senator Chuck Schumer and Senator Mitch McConnell not to bring forward H.R. 620 or any similar bill.

Calls to senators in Florida, Indiana, Maine, Michigan, Minnesota, Nevada, New Mexico, Oregon, Virginia, or Washington will have the most impact.  (https://www.senate.gov/senators/contact)

You leave Sen. Kaine’s office hoping that you have earned another co-sponsor for Cogswell-Macy and prepared to help him advocate for all people with disabilities.

Then, you bid Mr. Adams and Ms. Montague adieu and wait for your next appointment with Sen. Mark Warner in the afternoon.  You have time to jog back to your car and feed the meter.

Later, at the Hart Senate Office Building,  for the meeting with Senator Warner, you will see this sculptural work Mountains and Clouds by Alexander Calder.  The Hart building feels different from other senate buildings.  Wikipedia tells me its architectural style is Modernist not Neoclassical like the Dirksen and Russell buildings.

Now you know for your next Adventure in Advocacy.  If you see this sculpture, you are in the Hart Senate Office Building.  Handy!

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Image:  Large black triangular sculpture that nearly touches the ceiling of the atrium of the Hart building

 

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Image:  Woman standing next to a sign that reads Senator Mark R. Warner / Virginia

At some point in the afternoon, you realize you’ve been taking pictures of places but very few pictures of people.  You wish you had gotten a picture of the flower growers and their brightly decorated lapels, or the extremely straight part in that young man’s hair.

At Senator Warner’s office, you have a brief meeting with Lauren Marshall, the same staffer you met last year.  She is attentive and kind.  She promises to reread Cogswell-Macy and to bring it up with Sen. Warner.

That’s really all you can ask.

You walk away from the Hart Building hoping you have made some small connection within the Senate for children who are blind, or deaf, or deafblind.  You know that these populations of children do not get a lot of press.  You hope you can help spread a sense of urgency about the challenges facing children with sensory loss in the classroom.

You want senators, representatives, and anyone who affects legislation to understand two simple facts.  These children matter. Their education matters.

At the end of the day, you hope you have made it easier for the next mom to reach out to her legislator to tell her story.   That mom is going to make change happen for her child.  She is a force of nature.

P.S. You make it back to your car in time to avoid a ticket.  Success!

You see this poster at the Thai restaurant next to your car.

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Pretty much sums it up.

 

Moms On Monday # 15/ Beth from IA

Good morning fellow families of miraculous children who happen to have Cortical Visual Impairment,

This morning’s Mom on Monday is Beth from Iowa.  Beth is the mother of 3 young men, Matt (24), Pat (22), and Tyson (6).  She is a Special Education teacher for the Nebraska Department of Corrections.  As Beth says, “I’m an Iowa mom and a Nebraska teacher.”

Matt Pat and Tyson

Image:  A smiling young man giving a thumbs up sign and a smiling boy leaning against him.  Image: Two smiling young men.  One young man is holding the boy in his lap.

She has been a staunch supporter and board member of the Pediatric Cortical Visual Impairment Society (PCVIS).

Beth is wise, fierce and funny with the straight forward, “call ’em like you see ’em” perspective of a mom who has seen a lot and has persevered.

Both Tyson and Pat have been identified as having Cortical Visual Impairment although at markedly different times in their lives.    Beth has experienced having one child diagnosed as an infant and one child diagnosed as a young adult.

Tyson came into Beth’s life when he was 4 months old after being neglected, underfed and drugged by his birth mother.  In addition to CVI, Tyson has an ocular visual impairment.  He is extremely farsighted in one eye (20/400) and wears glasses.  He has moderate to severe hearing loss, hypotonia, developmental delays, and “autistic type behaviors”.  His dual sensory loss and lack of communication skills qualify him as a deafblind child.  Beth adopted Tyson when he was 18 months old.

Tyson was diagnosed with CVI at approximately 12 months old.

It was only when Beth started to learn more about Tyson’s brain based vision loss that she began to see similarities in Pat’s and Tyson’s visual behaviors. This led her to take her older son – by then a young man – to the same Pediatric Ophthalmologist who diagnosed Tyson, Dr. Richard Legge, from Omaha Children’s Hospital. (Dr. Legge is also the current president and one of the founders of the Pediatric Cortical Visual Impairment Society.)

Beth’s older son, Pat, received a CVI diagnosis at the age of 20.

Enduring a traumatic birth and underdeveloped lungs, Pat “was blue when he was born.”  He had Periventricular Leukomalacia (PVL), a type of brain injury to white matter and experienced heavy seizure activity before the age of 2.  He received early intervention services for speech delays.

As a boy, he wore glasses for 8 or 9 years and often complained that “his eyes were hurting.” Beth  continued to take him to pediatric eye doctors who decided that his history of seizures left him with “weak eyes” and a lazy eye.  Eventually, Pat stopped wearing glasses when the doctors decided that he had issues that “glasses would not fix.”  At that time, Beth explained that she did not know about the specializations for pediatric vision.  “I didn’t know there was such a thing as a neuro-ophthalmologist.”

Pat is 22 years old now.  His seizure disorder and visual impairment prohibit him from driving.  He is employed and takes an Uber or gets a ride from Beth to get where he needs to go.
About Tyson: What does he like to do? What makes him laugh? What are his favorite activities?

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Image:  A smiling young boy in glasses wearing a Chewbacca Halloween costume

Tyson loves cars, trucks, and all things with wheels.  He doesn’t understand the concept of cartoons, but will enjoys Daniel Tiger cartoons and Bob the Builder.  

He likes to watch old movies and Westerns like Rawhide and the Lone Ranger.   Older shows and movies have music in the background.  They are not as flashy as shows today. He likes the music; it helps him understand what is going on.   

His favorite colors are neon pink and green, especially pink.

Beth and his teachers to use neon pink to get Tyson’s visual attention.  One of his favorite toys is a bright pink sensory ball he received from the Iowa School for the Blind. 
When did you first learn about CVI?  

The first eye doctor I took him to said he didn’t know why people “brought kids in before the age of 2.” 

Beth realized that his multiple diagnoses required more specialized doctors, so she opened the phone book and started calling until she found Dr. Legge at Omaha Children’s Hospital.  
How were you given the diagnosis?  

Dr. Legge explained Cortical Visual Impairment.  He said it would be a long road and how his vision improved would depend on the amount of damage to Tyson’s brain.  He thought that since I was a special education teacher it would be easier for me to understand it.  
How was your child’s early intervention experience with regard to CVI?   Were your providers knowledgeable? Were they open to learning?

In early intervention, Tyson’s first Teacher of the Visually Impaired did not like that he didn’t prefer the color red.  What she took from Dr. Roman-Lantzy’s book was that all children with CVI prefer the color red.  This is NOT true and not what Dr. Roman-Lantzy wrote. 

Children may have color preferences.  The choice of color will vary depending on the child.  Tyson likes neon pink.  When he did not  respond to the color she thought he should respond to, she told Beth’s babysitter, “Tyson’s just making retarded choices.”  

Even though he was a non-verbal infant who couldn’t crawl, Tyson made his opinion of this TVI very clear. He didn’t crawl, but he could roll. So he rolled over to the front door to close it when he heard her approaching.  Sometimes he would roll away and hide under a bed when she came to work with him.

Beth changed to another TVI.  In Iowa, TVI cover geographic zones so a child may work with the same teacher from birth to adulthood.  Tyson’s 2nd TVI still works with him and his school team.  
How is CVI being addressed in your child’s school setting? 

The first year he was in school and this year have been great.  The first year, everyone was willing to learn.  We explained that the stairs needed to have reflective tape on them to help Tyson navigate them safely. The principal said that this accommodation would help everyone.  One weekend the principal and other school staff came in to put reflective tape on the stairs – one color for going up and one color for going down.
What do you know now that you wish you had known at the beginning of your journey as your sons’ mom?

  1. That you can switch your providers or services.  I assumed you just got who you assigned.
  2. Follow your gut.  If something feels wrong, keep looking, keep asking. 

 

What would you tell a mother whose child has just been identified as having CVI?

  • DO NOT GOOGLE CVI and all the horrible things you might find on the internet until you have spoken to an expert. Find an expert and ask questions.   And, keep asking. 
  • If you do research on the internet, look for something research based and at your level.  The internet is a wonderful and scary place at the same time.  Not everything you read will be true. 
  • It is terrifying enough when you hear initials instead of words.  When they said Pat had PVL (Periventricular Leukomalacia), I heard leukemia.  
  • Know that CVI is a spectrum diagnosis.  There can be 20 kids in a room with CVI and each one will be different from the next.  
  • Just because someone (even if it’s your parents) gives you advice, you can listen but it might not be what works for you. Take everything you hear with a grain of salt.  What’s best for you is not going to work for me.   Figure out what works for you and your child and what you have access to.  
  • Don’t be afraid to take advantage of any services you can get – even if it means having a label assigned to your child.   Take help where you can get it. 
  • Don’t be so afraid that there is so much more to do.  It’s small steps.  A little at a time. 
  • Move past the guilt part.  Cut that out quick.  

What would you like for people who have never heard of CVI to know?

Having a visual impairment is not the end of the world.  We all “see” things differently anyway. 

There is a huge range within the spectrum of a CVI diagnosis.  What they can do at 6 months is not what they can do at 16 years.  Let time work.  

Hopes and dreams? Anything else you’d like to add?

I’d like them to eventually take care of themselves and/or to express their needs. I’d like them to live a peaceful life.  


Tyson has CVI and other diagnoses. He has about 10 words – not full words. He has his own signs. Sometimes the frustration he has is not about vision, it’s communication. When they talk about getting a child to “talk,” use the word communicate. It might not be in the cards for him to talk.   And, you can’t let the kids get away with everything because of a diagnosis.  


There is a lot of trial and error in this.  At the end of the day, if they’re all still alive, it’s ok. 


On judgment from strangers:  Everyone will have an opinion. Tyson likes pink.  Some people have a problem with boys liking pink.  Who cares what color your kid likes? 

There are people everywhere who will try to give you advice.  For example, we were in a toy aisle one day.  A woman noticed Tyson and started to tell me all of the things he wasn’t doing.  She told me, if he’s not doing this and that, then he needs to be in therapy.  

I thought, “I’m so glad I came to the toy section of Walmart to get medical advice.”

 

And, that, gentle readers, may be my favorite sentence of all time. 

Beth, talking to you made my weekend.  Thank you for taking the time to share your experience, your wisdom, and your humor.  Your young men have a formidable mother.

Adventures in Advocacy / VA AER 2018

Hello Fellow Families of Children with CVI,

Last Thursday, I had the opportunity to present to the annual conference of the Virginia Association for Education and Rehabilitation of the Blind and Visually Impaired.

At the Pediatric Cortical Visual Impairment Society conference in Omaha last summer, Dr. Sandy Newcomb and I did a presentation “CVI:  Stuck in Phase II” about non-verbal children.

We submitted a similar presentation for Virginia AER.

Then, Dr. Sandy and the ladies from the Maryland Deaf-Blind Project were invited to the Royal Institute for Deaf and Blind Children in Australia to teach their staff about Cortical Visual Impairment.

So, Australia won Dr. Sandy and Virginia AER got me and my parent’s perspective.

I told the lovely folks at AER that Dr. Sandy couldn’t make it due to a rogue koala attack and we carried on.  It was great to see Mark Richert and Rebecca Sheffield of the American Foundation for the Blind in the audience.   Which reminds me…

FYI and ACTION ITEM: AFB will be hosting a conference call for the CVI community titled Mobilizing Advocacy to Improve Special Education for Children with CVI on Wednesday, March 14th at 8:30 until 11:30 p.m.  

To join the call:  1-866-939-3921 / Code: 46438061)

cvi-stuck

Image:  A slide projected onto a screen.  The slide reads CVI: Stuck in Phase II / A Parent’s Perspective

So here’s  how I figure it –

If sharing my story about being Eliza’s mom and the challenges we face in getting CVI understood by — well, everyone, really…..

If my explanation of how hard it has been to find (or even create)  a Free and Appropriate Public Education…

If I can share our experiences in getting Eliza assessed on the CVI Range and talk about modifications that are working for us and modifications that haven’t worked…..

If ANY of this information gives the folks in the audience a better understanding of what CVI is and a dose of empathy for what CVI families go through on a daily, weekly, monthly, … basis,

Then, what we have gone through will help someone else.   I can live with this.

AND

If  I get the chance to spread important information about CVI to people who may not have heard it before, then so much the better. 

Information such as the following:

  • Cortical Visual Impairment is the #1 Pediatric Visual Impairment in First World Countries
  • The presence of CVI is not an indicator of cognitive ability.
  • The presence of CVI is not an indicator of cognitive ability.
  • Every child with Cortical Visual Impairment has unique learning needs.
  • CHILDREN WITH CVI (just like children with ocular vision loss) ARE NOT INCIDENTAL LEARNERS.
  • The accommodations necessary for children with CVI are DIFFERENT than accommodations for children with ocular vision loss.
  • They miss out on learning opportunities because they cannot make sense of the visual world around them.

Oh, yeah and –

The presence of CVI is not an indicator of cognitive ability.

When they get tired of hearing a mom’s perspective, I bring out the experts:

CVI Experts Weigh In

Dr. Sandra Newcomb (Before the unfortunate koala incident of 2018) :

sandy koala

Image:  A woman petting a koala bear sitting in a tree.

Presumption of limited cognitive skills and abilities leads to limiting visual access to information, specifically communication information (objects and pictures)

  • Becomes self fulfilling 
  • By limiting a child’s choice and control by limiting visual access to information, you inhibit 
    Communication
    Quality of Life
    Social connection
    Learning
    Participation in family and society

————————————————————————————————————

Ellen Cadigan Mazel, M.Ed. CTVI, CVI Advisor, Perkins School for the Blind:

Be a lifelong learner about the brain. 

Be a lifelong learner about CVI.

Ocular vision loss does not improve.

CVI CAN IMPROVE.

CVI masks cognitive ability.

If we expect improvement, we will get improvement.  

The minute we stop expecting improvement, we will not get improvement.


Va AER chair.png

Image:  An empty podium.  A book and a large black posterboard is on a chair in front of the podium.

I showed off the new edition of Dr. Roman-Lantzy’s book, a picture calendar board I saw during Ellen Mazel’s presentation at NE AER and a Start Seeing CVI t-shirt.  Several TVI came up to me afterwards and asked about how to get a t-shirt.

During the presentation I suggested that the Perkins-Roman Endorsement class would be a great place to start learning more about how give a child with CVI visual access to her world.

I have very little to offer the overworked, underappreciated TVI I asked to get more training for our complicated kids.  I did, however, promise to make a pie for any future endorsee.

AND, this time, I even got Julie Durando from the Va Deaf-Blind Project to offer cake or other baked goods.  Apparently, she makes an Italian Wedding Cream Cake that will change your life and is about to begin experimenting with puff pastries.  Puff pastries, people!

I think we are on to something here, folks.

pie

Image:  A pumpkin pie with a slice missing.

Whatever it takes.

 

More Adventures in Advocacy to come!

 

 

Moms on Monday #14 / Jenny from IN

Good morning fellow families of wonderful children who happen to have CVI,

This morning’s Mom on Monday is Maya’s mom, Jenny, from Indiana.  Jenny and her family have been very active in advocating for early intervention services for children with vision loss.  In this post, Jenny takes on a common challenge to parents of children with CVI and ocular forms of visual impairment.  Take it away, Jenny!

maya

Image:  A girl in glasses gives a peace sign

I have two wonderful daughters, one of whom has CVI, Cortical Visual Impairment.  Maya is 7 years old now and in 2nd grade.  Her older sister, Zoey, is 8 and in 3rd grade.

Maya was born 2 weeks early on an overcast day in May.  Due to being rear ended in a car accident, I was in the ER, extremely pregnant, strapped to a back board, and wearing a C-collar.  I was watching the clock when the contractions started.  So began my journey in the world of having a “special needs child.”

Maya is a great kid who loves playing with her older sister.  Oh, there are times when she is extremely challenging, don’t get me wrong.  Right now her passion is butterflies.  Maya is as stubborn, determined, caring and sweet child who has never met a stranger.  At school she even has an amazing group of friends who look out for her.

I would like to talk about sleep.  Kiddos with a vision impairment can be, how can I put this?  Sleep challenged?  Let’s be honest, it can be a living nightmare for parents when their child can’t sleep.  It was for me.  She just wouldn’t sleep!  Maya was 2 years old at this point and climbing out of her crib when we first started talking about sleep.  I was looking particularly haggard at one Developmental Peds appointment when the doctor asked me if Maya was sleeping.  They recommended some melatonin and a sleep safe bed.  One insurance fight later, a big truck pulled out front with the miracle bed.  Let me tell you, it was worth every second of dealing with the insurance company.  The solution worked until Maya was 5 years old.  One day she discovered how to climb out of that thing.  This kid who walks like a drunken sailor can climb like a professional rock climber.  She would climb out of that bed, play in her room, and occasionally climb into bed with me, or go into her sister’s room and play.

Ok, I thought, I can deal with this.

Then, one night, she went outside.   I woke up to knocking on my bedroom window.

Good lord, it was Maya! Her knees were muddy where she had fallen, and her bare feet were cold.  She was bored playing by herself and wanted some company.  That was the worst night of my life.  My baby could have gotten seriously hurt and I was oblivious.  The thought never crossed my mind that she would go outside by herself!  I asked her why.  She said that she couldn’t sleep and decided to go play outside.  Oh, and she brought the family dog with her on her 2 a.m. outdoor adventure.  After that, my husband added alarms on Maya’s door, and every other door in the house that could lead to a potentially dangerous situation.  maya the great escape

Image:  A girl standing in a swing in the backyard

We changed tactics.  Instead of managing the situation, how do we make it better?  I googled, researched, and talked with my mom.  We tried everything from promising I-Pad time if she would stay in bed to taking away toys if she got out.  Nothing worked.  It felt like I was slowing losing my mind from not sleeping.  If she wasn’t sleeping, I wasn’t sleeping.  I needed to make sure she was safe.

Maya has trouble getting to sleep and staying asleep.  Finally, I talked to experts.  I called every doctor and specialist that I could think of who might help.  Doctors we hadn’t seen in years!  I was drowning and she was too.  Due to being persistent and sobbing over the phone to a sympathetic nurse we got an appointment  with the sleep clinic and the nearest Children’s Hospital.  (Of course, we had to get a referral sent over first.)

We implemented the advice that the sleep clinic recommended and it kind of worked, but not all the time.   She was falling asleep at school at this point.  She was acting out because she was tired and cranky.  That got us bumped up to the sleep psychologist.  With their help we finally got a handle on the situation when they added some sleep medication in addition to the melatonin.  It helps her sleep through the night and not get up at 4 a.m. every morning.  She doesn’t sleep well every night, but most nights.  It goes in cycles really.

Here is what we do.

No screen time 2 hours before bed.  She is sensitive to blue light.  It sends her brain the wrong signals.  Instead of the signals – “It’s time to relax” and produce melatonin, she would play on the IPad all night long.

The doctor added an iron supplement because was have a family history of restless leg syndrome.  The doctor thinks it’s genetic.  Apparently, it can skip a generation and then crop back up again.  Awesome!  It takes about 3 months to build up to the correct level of iron.  Maya tested low on her iron.  Hopefully, the supplement will help.  In some cases, once that iron level is up to where it needs to be the restless leg goes away.  (Fingers crossed!)

We also took out all of her toys and distractions from her room and added a strict bedtime and a bedtime routine.

If your child isn’t sleeping, you are not alone.  Don’t wait.  Talk with the experts and get some help.   It will benefit your whole family and your marriage.

 

Thank you Jenny and Maya!  I read your post with great interest because sleep is a constant challenge for us too.  Thanks for sharing!

“First they ignore you..”

“First they ignore you, then they laugh at you, then they fight you, then you win.”

— misattributed to Mahatma Ghandi according to Snopes (It doesn’t matter who said it. Heck, let’s go Spartacus and all claim it.) 

Yesterday, I reblogged a post from the CVI Teacher, Ellen Mazel.  She was responding to what seems to be a common – and, frankly, disappointing – misconception regarding the Perkins-Roman CVI Range Endorsement.

And, I couldn’t get it out of my head.  It really burned my beans so to speak.

We CVI families are in this together, so when you mess with one of us, you mess with the whole trailer park.  (My favorite bumper sticker from a visit to Florida some years ago.  You’re welcome.) 

The misconception is this.

Some administrators and educators in the field of the education of children with sensory loss believe that Perkins School for the Blind and Dr. Roman-Lantzy are making themselves rich off of the CVI Range Endorsement.

These folks are vocal and dismissive of the work being done to train providers and parents about how to help children with CVI build their abilities to visually access the world around them.

Ellen Mazel’s post lays out the administrative costs to offer the CVI Range endorsement as explained by Mary Zatta, the Director of Professional  Development at Perkins.

Looking at the numbers, it is easy to see that no person and no organization is becoming wealthy offering training about CVI.   They are serving a need that had gone unmet for decades.

If we are going to be talking about Perkins and Dr. Roman-Lantzy’s work, I’d like to get the facts straight:

Let’s be clear about who we are talking about here.

First, Perkins School for the Blind was established in 1829.  It is the oldest school for the blind in the United States.  It is a 501c3 organization committed to serving individuals who are blind and/or multiply impaired.

Their mission is to prepare children and young adults who are blind with the education, confidence and skills they need to realize their potential.

Perkins is a champion for children with blindness and other disabilities.  It has a long history and stellar reputation for service including the fact that Annie Sullivan – arguably one of the most dedicated and creative teachers ever – was educated there.

 

Second, Dr. Christine Roman-Lanzty has spent decades of her professional life studying CVI, and seeing thousands –

let’s say that again –

thousands –

of children identified with this brain based visual impairment.

Dr. Roman-Lantzy knew there was a desperate need for an approach to training providers and educators about CVI.

She took it upon herself to approach organizations in the blindness community to help her develop a training

or

to help her advocate for better training of TVI on the unique learning needs of children with CVI.

The organizations said no.

Then, she approached Perkins.

Perkins School for the Blind, under the leadership of President Dave Power, understood the need for serving children with CVI, a quickly growing (yet still under-recognized) population of children. (HOW is that still possible?)

Dr. Roman-Lantzy said, “Children with CVI can learn. They deserve to be educated. Their families deserve to be supported.    Perkins said YES.

Perkins and Dave Power welcomed children with CVI into the scope of their mission.  Mary Zatta worked with Dr. Roman-Lantzy on developing the endorsement so educators and therapists would have a reliable tool to use when working with children with CVI.  Perkins has since developed a wide variety of classes, webinars, and on-site programming around Cortical Visual Impairment  to further support children, families and educators.

From my perspective, when Perkins agreed to develop the Perkins-Roman Range Endorsement, they said “Yes, your daughter matters.”

 

I will be forever grateful to them for recognizing a need and for taking that first uncertain step.

I respectfully suggest to anyone who wants to dismiss the CVI Range Endorsement, do your homework.  Understand it.  Understand the process of teaching children with CVI.  

If and when you have another approach to teach our children, let me know.  I will be the first to read your research, to buy your book, and to engage in a spirited debate

Until then, what purpose does it serve you to be cynical about people who are legitimately trying to help children with CVI and their families? 

I am a mother. I do not have the luxury of cynicism. I have a finite amount of time to give my daughter the skills she needs to be as independent as possible. I am looking (I have spent the last decade searching) for what I can DO for my daughter.

Cynicism serves no one.

I have found a path within the work of Dr. Christine Roman-Lantzy. We have seen success on this path. Our daughter is learning to recognize pictures.  She is learning to sign.  She is learning to communicate and to understand concepts.

We have found hope on this path.  She will be able to communicate her wants and needs.  She will have enjoyable activities in her life and opportunities to socialize in a meaningful way because we are learning how to teach her about the world in a way she can understand.

Why would you deny my family this information, this reliable and valid method of assessment and education?  Why would you deny us hope?  

Many CVI parents will be happy to give you their anecdotal evidence about how their children’s vision (and consequently, their cognition and their behavior) have improved by working within the scope of Dr. Roman-Lantzy’s work.

We don’t have time to be cynical.  Cynicism kills hope.

Sometimes hope is all we have.

CVI is new territory for medical and educational professionals.  We need more research.  We need to raise awareness.  There is a newness to this movement that makes some doctors and teachers of the visually impaired uncomfortable.  It is uncomfortable.  We get it.  Parents of children with CVI live outside of our comfort zones all the time. We are learning all the time. Sometimes our efforts fall short of our expectations. We learn from them and try again. There is no other option for us.

But, for those who choose to stand on the sidelines casting judgement and spreading misinformation about Perkins,  Dr. Roman-Lantzy, and exceptional teachers like Ellen Mazel, I ask you: What purpose does your criticism serve?  Who does it help?

Aren’t you supposed to be helping the children and their families?  How are you helping?

What a disappointment it is to not even try.

What a greater disappointment to disregard those who do.

 

 

 

 

Death by IEP / Assessments and Access

There are no tests of potential (different from achievement) that are free from inherent bias for individuals with CVI. The items are often based on content that is linked to visual learning and therefore, the scores will skew low

….and they certainly do.
Dr. Christine Roman-Lantzy

Cognitive assessment is typically based on how a child learns information including rate of learning, problem solving, and accuracy. For children with vision impairment, they have not had access to basic information.

How can you learn, let alone be judged on, information that either you cannot access or others have not given you access?

Dr. Sandra Newcomb

Hello fellow families of beautiful children with CVI,

Since it’s IEP season, I’ve been thinking about assessment tests recently.  As a parent of a child with special needs, I have watched my daughter go through a gauntlet of physical, developmental and cognitive testing from her earliest days.  It can be hard to watch.  It can be hard to hear the results.  Whatever the results, I want them to be accurate.

As the parent of child with CVI, I have learned that there is a lot to be aware of when someone says they want to assess your child.

When Eliza was about a year old, a new occupational therapist wanted to assess her.

We were still wrapping our minds around the diagnoses that had quickly followed our girl into the world:  microcephaly, cerebral palsy, global developmental delay, cortical visual impairment.  The learning curve was less a curve than a straight 90 degree angle to climb with no climbing gear,  and occasional boulders of unforeseen complications – seizures, asthma attacks, severe GI issues, little sleep – raining down at any given time.  We were trying to find our way.

This was soon after our Neuro-Ophthalmologist had told us there was nothing we could do about CVI. “Take her home, treat her like a blind child, come back and see me in a year.”

This was soon after I had ordered Dr. Roman-Lantzy’s book and sought her out for the first time.  I was just at the beginning of understanding what Cortical Visual Impairment was.  The message that Eliza’s vision could improve, however, was loud and clear.

Dr. Roman-Lantzy’s work offered me a glimpse of hope, especially because many of her 10 CVI characteristics explained Eliza’s puzzling behaviors for the first time..

Eliza was a light gazer.  She stared at light coming in through windows, lamps, or any strong light source.  She stared at fans.  She reluctantly used her peripheral vision and only if she had to. There was a long latency period between the time she would glance sideways at an object and then reach for it (usually with her head turned away from the object).  If you did not know to wait, you would miss her processing and getting organized enough to reach for something she had seen 15, 20, 30 seconds earlier.

She would not look into faces.  Her head often hung down, especially in new environments.  The novelty of new places was too much sensory input, and often, caused her to have screaming fits.   She was in Phase I.  I was still learning what that meant, but it was a place to start.  It was a foot hold in my 90 degree upward climb.

The new occupational therapist wanted to assess Eliza’s fine motor skills to establish a baseline to measure future progress.  Made sense to me.  I knew we had to get used to doing this.  We had to let the experts do their thing. Their keen eyes and knowledge would help me read my girl who was in many ways still a puzzle to me.  Their assessments would give us a fuller picture of Eliza and what she could do.  Or would they?

This is what I remember from the first assessment 10 years ago.

It was called the Hawaii Early Learning Profile.  I remember because the acronym for this assessment is HELP.  That was very comforting.  Boy, did I need HELP.  And, why Hawaii?    What did Hawaii know that the rest of the United States did not?  Maybe, there would be poi and hula dancing involved.  (Remember, I was not sleeping and it gets very busy in my head even when I’m well rested).  The HELP would help.

Standing in the OT’s office with one-year-old Eliza on my hip, I read over the developmental charts in the HELP.  I noticed that a lot of what was assessed required that the child had typical vision.   I mentioned this to the therapist.  She agreed that was an issue.  HELP, like most developmental assessments, did not account for vision loss.  But, she would write a note that Eliza had CVI.

I continued reading the chart of developmental milestones.

Looks at picture” – Nope.

“Plays with hands, feet” – Hasn’t found them yet, so no.

“Looks at place where ball falls down” – Uh Uh.

“Plays Peek-A-Boo”  – Well, doesn’t look at faces, so pass.

“Searches with eyes for sound” – Can we substitute stares at light bulbs?

“Places cylinder in similarly shaped hole” – Okay, I don’t even know where to begin with this one.  Just no.

“She is technically legally blind,” I told the OT.  “She doesn’t look at pictures.  She doesn’t look at faces. New sounds startle her. Do you have a different assessment?”  

The OT assured me she would mention Eliza’s diagnosis of CVI in the notes section of the test.

“Wait, what?  The central challenge to her ability to interact with the world will be a footnote?” (Okay, I didn’t say anything that articulate.  The “Wait, what?” is more like it.) 

To begin, she wanted to test Eliza’s ability to track a ball and to reach for it.  She put a light colored tennis ball on a school desk and rolled it to where I was standing with Eliza in my arms.

“Get the ball, Eliza!”  the therapist prompted.  The ball rolled off the desk.  Eliza was oblivious.    The OT looked apologetic, picked up the ball and tried it again.  Eliza stared at the fluorescent lights above us.  I stared at the therapist in disbelief.

She can’t see the ball,” I told the OT.  “It is too similar to the color of the desk.  Can I put a piece of black cloth on the desk to make it easier for her to see?”

“No. We have to maintain the protocol of the assessment.”

“If she could see it, she might reach for it.” 

“We can’t change how we do the assessment.”

So, the assessment will just be a series of zeroes then. It is going to look like she can’t do any of this if we don’t give her a chance to see what you expect her to do.  You’re not going to get an accurate idea of what she can do right now this way.  That’s like me asking you to run an obstacle course or do an algebra test in the dark. How would you score on that?”

“I’m sorry.  This is how we perform this assessment.”

“Well, it’s basically useless.  So, I think we are done here.” 

After watching the OT roll a ball my daughter could not see to her and then, scoring her as unable to track and complete the task, it dawned on me that the rules of this test were stacked against her.  Her development was going to chart a different path, a path this test did not accurately measure.

This was a new and strange idea.  I was slowly getting used to the fact that Eliza didn’t fit in anyone else’s boxes – not the pediatrician’s typical development questionnaires, not the stupid head circumference charts, and now, not even in the assessment for a child with developmental delays.

We were in unchartered territory.  We needed people who would think (and assess) outside of the box.  If the test did not apply to her, then the rules didn’t either.   I thanked the OT for her time, told her we would not be working with her, and took Eliza home.

I am not an expert in developmental assessments, but I have sat through many of them over the years both as an observer and an interviewee.  Eliza is far too capable and far too challenging to be relegated to “notes in the margin.”

I have since seen gifted  interventionists and therapists work with Eliza’s sensory challenges – starting with a thorough reading of her scores on the CVI Range.  I have seen them observe her intently for long periods of time.  I have seen them use trial and error when necessary, but always respectfully.

The kid faces enough challenges as it is.  She at least deserves to be evaluated in a way that reflects her true ability and potential.

And, the HELP was no help at all.  (Sorry.  It was right there.  Someone HAD to say it.) 


Fast forward about 10 years to a week ago, when I was sitting in a meeting with our IEP team at Eliza’s school.

Our search for FAPE in our CVI saga is a long and complicated tale. There have been successes and setbacks.  In the CVI spectrum, Eliza is on the complicated side.  She is non-verbal and has had a series of lackluster school placements.

Yes, she has delays in her physical and cognitive development.  Yes, she can learn.  Yes, these two sentences can co-exist.  You would be surprised how many people you have to convince of this basic fact.

This year we have had slow, steady success with communication.  On the other hand, she has also developed some behaviors that get her out of doing things she doesn’t want to do.  (That kind of cleverness doesn’t show up on cognitive tests.  And, will give me more grey hair than I already have.)

In this recent IEP meeting, a school psychologist confidently presented her assessment of Eliza’s behaviors and introduced the Behavior Intervention Plan that would shape them right up.  There would be a token system of bright yellow stars that Eliza would learn to associate with immediate rewards.  Eliza will comply!  Eliza will be rewarded!

Eliza is currently in mid to upper Phase II now.  With private consultation and work at home, she has begun showing more visual curiosity.  We have worked on teaching actual objects in her environment first and then moving to 2D representations of these objects.  Recent research from CTVI Matt Tietjen has revealed that children with CVI struggle the most with symbolic representations of objects – cartoon drawings, illustrations, etc…   They need to learn the actual objects and then learn the pictures of the objects.  (Check out his class, “What’s the Complexity Framework” offered through Perkins elearning.  Seriously.)

This is what was going through my mind when the psychologist started explaining her token system to us.  They were proposing stars (symbols)  to represent a reward for a child who does not have a lot of external motivators. (I never said she was easy.)  I wondered if the psychologist had actually met my girl.

I wanted to clarify about needing to use actual objects and then move to 2D pictures.

I interjected, “You realize she has a visual impairment right?  She has Cortical Visual Impairment, so we have to —” 

I know, I know.  High contrast.  We have to make the stars high contrast.”  The psychologist cut me off mid-sentence and began explaining her token system again.

I was reminded of something CVI Teacher Ellen Mazel said at a recent conference.

Ellen says that the most dangerous people she has ever met are

1. Teachers who have never heard about CVI

and

2. Teachers who have been to one workshop or read one article and think they are experts in CVI.

I knew I was sitting in this IEP meeting with someone who had read an article and decided she knew CVI.

She was going to continue using the assessments and the strategies she knew (for children with – I can only assume – typical vision) without taking into account how Eliza has access to her environment.
By the way, not having access to your environment, not understanding what is going on around you will affect your behavior.

This situation is still a work in progress.

I am shopping for an advocate and hoping to win the lottery.  To be continued….


What have I learned from these experiences?  What do I continue to learn?

When dealing with children identified with CVI, the CVI Range (Roman 2007) is the assessment that is the foundation of all other assessments.

When you are the parent of a child with CVI, be wary of the assessments used by your intervention or educational teams.  There are not many developmental assessments that take visual impairment into account.  Ask a lot of questions.

Ask them if they know what incidental learning is.  Our children are NOT incidental learners.  This fact should guide how therapists and teachers interact with them.

If you don’t feel comfortable with the answers, ask more questions until you do.  Or, ask for new providers.  You have every right to work with therapists and interventionists who have your child’s best interest at heart and who understand how to work with a child  with CVI.

Regarding other assessments for young children with sensory loss, I found interesting information here:

http://www.wonderbaby.org/articles/development-charts

and

http://www.perkinselearning.org/scout/assessment-young-children-visual-impairments

I am also aware of The Oregon Project for Preschool Children who are Blind or Visually Impaired. It is a comprehensive assessment and curriculum designed for use with children birth to six who are blind or visually impaired. It can be used by parents, teachers, vision specialists, or counselors in the home or in the classroom setting.

 

I am not recommending one assessment over another.  Each child with CVI is unique and requires a multi-disciplinary team approach of therapists, interventionists, teachers, and doctors.  Some of these team members must have a thorough understanding of CVI.

We, the parents, are team captains.  If your team proposes to assess your child with developmental tests that do not give your child access, you may need to discuss what other methods of assessments are available.

If no one on your team says you need to get a CVI Range completed for your child by a Perkins-Roman Endorsee, then, you need to lead the way.

Inaccurate results are not going to help your child.  Inaccurate results are not going to help your child’s therapists or educational team.

Even when it comes to assessments:

It is not extra

And, to all of those folks who want to test our children with tests that do not accommodate them…

To all of the therapists and teachers who have read one article or attended one workshop on CVI and then try to fit these kids in the margins or the footnotes, Eliza and I would like to respectfully say,

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Moms on Monday / Storytelling is dangerous

“Storytelling is dangerous to those who profit from the way things are because it has the power to show that the way things are is not permanent.  Not universal and sometimes, not even necessary.” 

-Ursula Le Guin


 

Hello fellow families of delightful children who happen to be identified with Cortical Visual Impairment,

There are several mothers out there who have let me know that they are working on a post for Moms on Monday.  Ladies, I thank you. I’m a mom and it’s Monday, so I’m going to invite you once again to share a part of your and your child’s story with us. When you have the time, of course.

As we all know, and as Dr. Roman-Lantzy frequently says, CVI Moms are the busiest people we know.

We are the busiest people she knows because we are working tirelessly to get our children acknowledged and accommodated in a system that is not built to acknowledge or accommodate them.

The way things are is exhausting and discouraging.  

I hope to gather as many stories as possible as a resource of personal experiences for families. Every story is important.  Please know that there are no wrong answers.  You can write something original, or you can use the questions in the Calling All CVI Moms post as a starting point.  You can help another parent just by allowing your voice to be heard and allowing your child to be seen.


There is another reason for collecting stories.

As the writer Ursula Le Guin reminds us, the way things are is not permanent.

Not universal and not even necessary.

Let that percolate for a minute.

The way things are is not permanent

Not. Universal.

And 

Not. Even. Necessary. (This is my favorite part.)

We have a unique ability to assess the shortcomings of the systems we are fighting. (Did you ever think you’d be an expert on neurology, ophthalmology, neuroscience, & methods of teaching children with sensory loss?  Me neither.) 

From our shared experiences, we have the ability to imagine a better way and to work towards a Way things are” that recognizes and provides for children with CVI.  

Our stories will become a spotlight on inefficient, outdated methods of data collection and a tone deaf educational system. Our children matter. They need to be counted. They need to be taught, actually taught. (ACCESS! They must have access! They are not incidental learners! Sorry, I just had to get that out.)

As CVI families begin to advocate, they will find themselves in the offices of their elected officials and speaking in front of school boards. When CVI families begin to advocate, they may feel as though they are fighting an uphill battle (yep) and that they are alone (NOPE)

The methods of keeping track of our children on local, state, and even the federal level are woefully inadequate.  States vary in their expectation of counting children with special needs, and CVI does not even make it on the list of many states.  It is still called “Cortical Blindness” in many places.  We need to change that.

If the children are not identified, and not accounted for, then the funding necessary to provide resources will not be included in your state budget or the federal budget.

There are plenty of state legislators who will not want to give you the time of day because you and your story represent more expenses in your state’s government.  That is just too bad because it’s your budget too.  You live in and pay taxes in your state.  Heck, you vote!  (Please vote.)   Your friendly neighborhood legislator needs to meet with you, a friendly neighborhood constituent.

Here’s an example of the power of storytelling.

When we moved to Indiana, Eliza was 2 years old.  She had one more year of early intervention.  She was globally delayed.  We qualified for several therapies, occupational, physical, speech and developmental therapy.  I was so grateful to have access to these services.  I knew, however, that her lack of usable vision was going to affect how useful all the other therapies were, so I asked about early intervention for vision loss.

I was directed to the Indiana First Steps matrix – the database for all of the providers in the state.  When I entered “visual impairment,”  the name of an Optometry professor at Indiana University came up.

One name.

For the entire state.

And, the description mentioned making an appointment to come to his office to have your child assessed for glasses.  Not home visits.  Not early intervention.

What about the children who were blind?  Or, who, like Eliza, were legally blind due to Cortical Visual Impairment and who needed to be taught to see?

I asked around and was referred to the Indiana State School for the Blind and Visually Impaired.  I was able to set up an appointment with the Outreach TVI who came to my house to meet Eliza and me a few weeks later.  She was the most wonderful and experienced TVI.  She knew about CVI.  She understood the lack of access and calmed my fears.  She gave me several articles and showed me some ways to interact with Eliza that had not occurred to me.  She stayed for over 2 hours.

My prayers were answered.

I asked to schedule our next appointment.

And, I discovered that this wonderful TVI had a caseload of over 300 children.

One teacher was the entire early intervention team for infants and toddlers who were blind or had severe vision loss.  She drove around the state staying as long as she could, providing everything she could in the very limited time and with the very limited resources available to her.  She knew it was not nearly enough.  What she provided was what the system would allow.

It was just how things were.

By the time she could see Eliza again, Eliza would have aged out of early intervention.

How was that okay?

To make a long story a tad shorter, I eventually found myself testifying before committees at the Indiana Statehouse about the lack of early intervention for infants and toddlers with vision loss.  I poured my heart out about how hard it had been to have a baby I could not reach while some committee members chatted or got up and left. (Not all. Some were very receptive.)  I had meetings with state representatives who did not crack a smile the entire time I sat across from them.   It was easy to walk away from these experiences and think that nothing would change.

I also had meetings with state representatives to vowed to work with me and did.

statehouse

Image:  Three women seated around a table.  Annie Hughes and Rebecca Davis meeting with policy staff at Indiana Statehouse.

Over time and with the help of Indiana State Senator Mark Stoops, and his brilliant policy director, LeNee Carroll, Indiana made changes to its Birth Defects Registry (worst. name. ever.).  We got CVI and visual impairments added.  We were able to advocate for and to build a system of early intervention services specifically for children with vision loss.

We (that wonderful TVI, Annie Hughes, an agency called Visually Impaired Preschool Services, and a group of kickass families) changed the way things were.  

It can be done.

After your interaction with the cranky legislator who does not want to fund more services for children with special needs, you can tell Rep. Cranky to go to CVI Momifesto to meet more parents of children with CVI and to learn more about what they have gone through.  The stories here can provide back up.

There is more back up on the way.  2018 will indeed be a turning point in the awareness of CVI.  Many CVI moms are working to make sure of this.

You have the power to change the way things are.

gals

Image:  Three women standing with arms linked.  Meredith Howell (CVI Mom) and Annie Hughes from VIPS Indiana, and Rebecca Davis

 

 

Death by IEP / A New Category (Not a previously unpublished Agatha Christie novel…although wouldn’t THAT be cool? …but I digress.)

Hello fellow families of glorious children who happen to have Cortical Visual Impairment,

It’s IEP season at our house! 

That festive time of year parents of students with special needs eagerly anticipate with the kind of glee small children save for Santa.

Deck the halls with articles about neuroplasticity and webinars on Orientation and Mobility….Fa La La La and the CVI Range….. Ho Ho, ah phooey.

I can’t fool you.  I am not jolly.

Technically, it’s always IEP season at our house because I continue learning what I have to ask for and how to advocate for my complicated girl with a brain based vision impairment not currently acknowledged by the vast majority of school systems in the U.S.  More importantly, it is not acknowledged by, or regulated in, the current laws of Special Education.

Ho Ho – Holy Crud, this is hard. 

(To get us all on the same page, here’s a very basic definition of an IEP.

“IEP stands for Individualized Education Program.  An IEP is a written statement for a child with a disability  that is developed, reviewed, and revised in a meeting in keeping with certain requirements of law and regulations.

The IEP has two general purposes:

(1) to establish measurable annual goals for the child;

(2) to state the special education and related services and supplementary aids and services that the public agency will provide to, or on behalf of, the child.

When constructing an appropriate educational program for a child with disability, the IEP team broadly considers the child’s involvement and participation in three main areas of school life:

  • the general education curriculum
  • extracurricular activities
  • nonacademic activities”)
Source:  http://www.parentcenterhub.org

By the way, we parents are a critical part of the IEP team.

Don’t let anyone tell you otherwise.  Especially when it comes to CVI.  We have a long, bumpy road ahead of us, but we are the ones getting educated about CVI.  We are the ones seeking out experts, reading journals and books.

(Speaking of BOOKS, Dr. Roman-Lantzy’s NEW book, Cortical Visual Impairment: An Approach to Assessment and Intervention, 2nd Edition is out!!!!

Go to the AFB Store to check it out! 

https://www.afb.org/store/Pages/ShoppingCart/HomePage.aspx 

Then Celebrate!!)

We moms and dads are critical members of our children’s IEP teams.  We stay up late researching articles on CVI and our children’s other needs and diagnoses.  We print them out the night before.  We highlight and staple the articles filing them in manila folders with our children’s names written neatly on the tab.  This is our attempt to have some control over a situation in which we have nearly no control whatsoever. (Or maybe it’s just me.)

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Image:  A haggard woman in sunglasses holding stacks of research in each hand prior to an IEP meeting.

I am a perpetual optimist, much to the annoyance of my husband and some of my friends. Yet, despite my tendency to be ridiculously optimistic in the face of dire circumstances, I am worn down by years of IEP meetings that seem to go nowhere.


I have not learned the skill of successful IEP planning.  I am embarrassed to admit this. My daughter is now 11-years-old and I still feel inept and ineffective.  I feel as though I should be smarter than this.  

Googling “IEP assistance” brings up  many, many resources for IEP writing and advocacy.  I suppose I am in good, if frustrated, company.


 

In spite of plenty of effort and research, I  haven’t been particularly successful in articulating how Eliza needs to learn and how the school needs to put it in place. I’m worn down by giving each new school and each new teacher the benefit of the doubt for a few months,  then discovering that the implementation of what we put in the IEP was not carried out.  I’m worn down by insisting that she can learn more than the school thinks she can (“The downward spiral of low expectations.”).  I am worn down by seeing stacks of articles I printed out, untouched on someone’s desk.  Or, never seeing them again.

iep-hell.png

Image:  A dining room table covered in papers, low tech communication devices, pictures and binders in preparation for an IEP meeting

Every year I spend  hour after hour attempting to convince, cajole,  and then, demand that the school team learn about how CVI is an obstacle to my child’s ability to learn and WHAT TO DO ABOUT IT.  I have hired private consultants and therapists with money I do not have.  I have documented the progress we make at home to take to school to show what Eliza can accomplish with mutual goals, high expectations, and a common understanding of how to navigate Cortical Visual Impairment because it is an issue every waking second of her day – much like my typical vision is with me every waking second of my day.

Meetings are planned.  School staffs are polite and weary.  Meetings end.  Everyone needs to get back to their jobs.   We agree to disagree.  I refuse to sign the document, or sign in partial agreement with my handwritten list of concerns.

The NEXT IEP meeting is scheduled in a couple of weeks so we can all jump back into the ring and continue the match.

And, before I know it, another year has passed.  I have been humored and circumvented without even realizing it.

I drag myself home after another IEP  meeting to nowhere like the last contestant in a 24 hour dance marathon.  I’ll crawl into a quiet place to sit and stare vacantly for awhile.  (Sometimes I find myself mumbling, “The horror, the horror…”  Ok, that was a slight exaggeration.  Maybe, “the frustration, the lack of understanding…access…..it’s about access, dang it”  Yes, that’s more like it.)

One night as my husband was coolly observing what used to be the dining table (see above), but is now my Command Center For Changing Education As We Know It For Children with CVI  – (too much?) – he commented,

“It’s like Death by IEP.”

And, suddenly my world made a little more sense.

So, now CVI Momifesto has a new category for all of the fun, D-I-Y projects that are our children’s IEPs.   This category will be a place to tell the IEP stories and to share what works and what really doesn’t work.

Baloney

Image:  A post-it note with the words “This is baloney” written on it.  The post-it note is on a copy of an IEP.

To be continued…..

 

 

 

 

 

 

 

Moms on Monday #13 / Rachel from MD

Good morning fellow families of lovable kiddos who happen to have Cortical Visual Impairment!

This morning’s Mom on Monday is Rachel from Maryland.  Rachel’s son, Henry, was identified fairly recently as having the characteristics of CVI.  Rachel hit the ground running educating herself and advocating for her son and our children at the National Institutes of Health.  (See a photo that will make your day below!)

Right now, I am the closest I’ve ever been to truly knowing my son.

My sweet, joyful, funny Henry who is always ready for a hug, a dance party, or a bus ride, but so often is frustrated to the point of tears by the mundane challenges that other 5 years olds negotiate so effortlessly.

Since he was born, we have puzzled over Henry’s vision problems, coupled with developmental delays and behavioral outbursts. Then, only 8 months ago, for the first time, a therapist suggested he had the characteristics of CVI. This moment changed everything.

Rachel and Henry

Rachel and Henry schooling the medical community about the characteristics of CVI at the National Institutes of Health.  How cool is this picture?  

Henry’s vision was always a mystery—at least that’s what every doctor told me.

We saw a pediatric ophthalmologist, neurologist, neuro-ophthalmologist at Children’s National in DC, pediatric genetic ophthalmologist at the National Institute for Health, and no one ever mentioned CVI. This included a series of vision teachers that had worked with Henry since he was 1. So of course, I took the wait-and-see approach. If these doctors and teachers aren’t sure, then Henry’s vision must be a mystery. (Yep, that’s me screaming right now. The daily anger has not yet subsided.)

Our appointments were dominated with conversation about Henry’s ocular issues: his nystagmus and pale, small(ish) optic nerves. Henry also has hypotonia (low muscle tone), vestibular processing issues, and global developmental delays (high fives to all you CVI parents who spend the evenings and weekends at therapy appointments!).

We spent Henry’s first two years of life trying to get him to eat enough. He was in the zero percentile for weight for way too long. By now, he eats nonstop, and we are grateful to be out of survival mode. Like we all have heard, our kids are unique cases, complicated, with a lot of things going on.

But this still doesn’t justify why CVI was not on our radar sooner (I still kick myself for not figuring out on my own that he has CVI).

So back to this moment that changed everything. Henry was in a Pre-K program for students with special education services. His teacher kept asking me about his vision and I kept going back to Henry’s primary ophthalmologist, who told me that his vision was fine (yes, his acuity was in the normal range) and that Henry has attention and behavioral issues that need to be addressed. I naively told Henry’s teacher this and I am forever grateful that she did not listen to me. She got a specialist from the vision office to observe Henry who then recommended him for the Vision Pre-K class.

At Henry’s IEP meeting 8 months ago, one of the vision teachers at the table said, “You know, Henry has characteristic behaviors of CVI.”

I sat there, mouth open, frozen with confusion, and muttered, “What is CVI?” I later learned that this TVI attended a CVI training with Dr. Sandra Newcomb, one of the leading experts on CVI who also recently completed Henry’s CVI Range Assessment—Henry’s in Phase 2 (Roman-Lantzy).

From what I hear from CVI parents across the country, a TVI knowledgeable about CVI is the exception. It is unacceptable that our kids do not have access to trained vision teachers who can provide interventions.

We know that our kids can learn to see with the appropriate interventions (Roman-Lantzy), so why, WHY, do universities refuse to include coursework on CVI?

A side note on Henry’s current Vision Pre-K class. Henry’s teacher is a TVI knowledgeable about CVI. The physical environment is CVI friendly and all tasks are modified for Henry’s CVI. There are 8 students in the class with a range of vision issues, half of which have CVI. The school’s OT, PT, and Speech therapists adapt their work based on Henry’s CVI needs. Even the PE teacher develops activities adapted for the blind and visually impaired. I know, is this for real? It is. Henry’s placement is an anomaly in this country. Every child with CVI deserves this opportunity. Unfortunately, this vision program stops at Pre-K and because Henry is low-incidence (I. Hate. This. Term), he has fewer options available for Kindergarten. So I join the ranks of fierce parent advocates to ensure my son’s needs are met and that he has access to all aspects of the learning environment.

It’s been a whirlwind trying to learn as much as I can about CVI, while processing the range of emotions that come with this new diagnosis—gratitude, anger, relief, frustration, excitement, WHY MY SON?!, and hope. Dr. Roman-Lantzy’s brilliance and expertise continues to help me and thousands of families help our kids see.

Brenda, creator of Start Seeing CVI, said it best, “She is our Annie Sullivan.” Dr. Roman-Lantzy, thank you from the depths my heart for enabling me to truly understand my son.

I know my son now. I know why he doesn’t use or rely on his vision. I know why he has frequent meltdowns and why he has trouble with transitions. I know why he’s never looked me in the eye and why he requires constant hugs. I know why he hates reading books and doing fine motor tasks. I know why he has difficulty with attention and is always on the move. I know why he loves yellow buses and yellow everything. I know why he doesn’t recognize me when I pick him up at daycare. I know why he always holds my hand when ever we are outside or in a new environment. I know why he can’t find something that dropped onto a patterned rug. I know why reading and writing will be a struggle, but he will learn to read and he will learn to write. I know my sweet Henry, I know how to be his parent, and I am filled with immense gratitude.

What has been my one of my greatest joys lately is connecting with CVI moms from across the country. Being able to revel in our shared experiences, to ask questions, share resources and strategies, to get fired-up, and to know that I have these brilliant and fierce woman to lean on, gets me through the exhaustion and unsure moments.

This year is the first of many years of being a CVI tiger mom. To make sure the medical and education fields wake up to CVI, so no parent is ever left wondering why their child’s vision is a mystery. And no parent ever has to sit in an eternal IEP meeting trying to convince the team to take their child’s CVI seriously.

To all the CVI parents out there, the highest of fives. Onward!

Thank you Rachel and Henry!   

To purchase your or your child’s own Start Seeing CVI t-shirt, go to https://startseeingcvi.com/buy-the-t-shirt/.  Just in time for IFSP or IEP season!  Half of the proceeds from purchase will go to support the Pediatric CVI Society, the only non-profit organization dedicated exclusively to Cortical Visual Impairment.

 

Moms on Monday #12 / Anna from OH

Happy Monday morning fellow families of glorious children who happen to have CVI,

This morning I am so glad to have permission to share the words and the works of a mother who has helped lay the foundation of the Pediatric CVI Society over the past few years.  She has made great strides in raising awareness about CVI in her local community through her creative fundraising methods. In addition, she and her oldest daughter, Olivia, have been active in changing societal perceptions of children with special needs.

Anna from Ohio is the mother of three beautiful, energetic children and a RN who teaches student nurses.

In 2013, Anna started a blog, Hope She Smiles (http://oliviacansmile.blogspot.com) to chronicle her family’s experiences after her daughter, Olivia, was born.  Anna gave me permission to repost some of her inspiring blog.

Thank you Anna and Olivia!

From September 2013

“Take her home and hope she smiles” was the quote from the Neonatalogist the day after our sweet Olivia was born. 

The question that I’ve been asking myself over the past week is, “Where do I start?”

Usually the best place to start is at the beginning, but historically I do not follow the path that is paved. In an attempt to answer questions that I am frequently asked by other parents of children with CVI is, I will focus on the present with the past sprinkled in.

In August of 2007, we didn’t know what Olivia’s future held. We heard news from the NICU team at West Penn Hospital that would change our life forever. After suffering seizures and apnea 12 hours after birth, she was life-flighted to Pittsburgh. Her diagnosis was massive stroke in utero, cause undetermined.

What did this mean for her, her development, and her quality of life? We had so many unanswered questions. As a nurse myself, I struggled with understanding what this meant for a newborn. I knew in that moment that I was not acting as a nurse, but as a mother. A mother? I had only been a mother for 24 hours and I didn’t know what I was supposed to do.

SO the present…Where is Olivia now?

With the help of Early Intervention; Occupational, Physical, Speech, Vision therapies, follow up appointments; and a new appreciation for special needs children we were on our way.

She is currently in Phase III of the CVI Range and I know all of the above, plus other things that I will be mentioning in future blog posts, have been instrumental in getting us to this point.

Her main diagnosis resulting from the stroke: Cortical Visual Impairment (CVI). Luckily we were connected with Dr. Christine Roman-Lantzy from the Pediatric View Program when Olivia was only a few days old.

(Dr. Roman) has taught us that the focus should be on her vision, because it CAN improve. This statement gave us extreme hope and determination.

Olivia is in Kindergarten now and is a social butterfly. She is extremely happy and energetic. She can not only smile, but learned to walk, run, jump, ride a bike with training wheels, swim with a life jacket, horseback riding. We have even taken her ice skating.

Our approach to her and her diagnosis is “Let’s try it” Sometimes it is a success and she surprises us beyond belief and sometimes it fails and we vow to try again at a later date.

I believe our nontraditional approach has led us to where we are now.

From September 29, 2013 post entitled “Hope”ful

Hope” she smiles…

The word hope was a word I used often in my life previous to the birth of my daughter:
I hope…we win the game.
I hope…I pass my test.
I hope…I make a lot of money.”

Hope” now has an entirely different meaning. My outlook has changed since my first 30 years.

It all changed when I heard those words, “Take her home and hope she smiles.”

Hope has given me the drive to seek out interventions and modalities that will improve Olivia’s life. It has given us strength when the road that we are on proves to be challenging and frustrating. It has secured my belief in the blessings of God.

Hope reminds me that no one is perfect, we all have challenges that we face. I am proud to be helping Olivia meet those challenges head on.

Hope drives me to find a way.

Hope doesn’t come without disappointments. I hope for her to see, talk, read and write like all the other kids. I hope for her to make lasting friendships. Hope-fully these accomplishments will just take a littlemore time.

Lastly, I need to mention what drives hope. What is the fuel that gives us hope? Only one word…LOVE

From September 2013 post A Whole New World

My occupation is an RN. Currently, I work as a course instructor at a school of nursing. My job is to educate future nurses. I spend hours preparing objectives, lectures, exams, quizzes and teaching on the clinical unit.

I admit that I feel guilty that I devote so many hours of the day educating others when I have a child at home in need of learning a basic function–sight.

I am concerned when I send her off to school will she be learning in an atmosphere and a way that CVI children need to learn.

I have to somehow learn to let go and entrust other people, other professionals, to do their job.

But do they really know about CVI and all that it entails? Are they good enough for my child? I believe every parent feels this way regardless of the situation.

I do understand how crucial these early years are in the development of her vision. It can improve. But how?

Traditional methods used for visually impaired children to learn do not work for children with cortical visual impairment. The educators need to realize this and be able…no, willing…to adapt her learning appropriately.

So my goal is to find that way. 

Bridging into Phase III on the CVI Range is a miraculous happening for my sweet Olivia. But the road through phase 3 seems to be a very complicated one. One that even the experts in the field don’t know how to conquer.

So I accept that challenge. I vow to find a way. My goal is for Olivia to reach a 10 on the CVI range. A 10 means that she functions as a child with no visual impairment would function. Why not? Why not attempt to reach for 10?

Remembering back to our NICU days about a week after Olivia was born, I remember one of the neonatologist saying to us, “Reach for the stars. If you miss, you have lost nothing.” This became our approach to Olivia and to her future.


Anna was instrumental in raising the funding that allowed the Pediatric CVI Society to achieve non-profit status.  Anna and Olivia have done some very creative fundraisers.  Even Olivia’s friends have risen to the challenge of supporting the PCVI Society.

In 2015, Anna’s efforts were recognized by the PCVI Society.  She was the first inductee to the PCVI Society Hall of Fame.

President Dr. Richard Legge said in his remarks, “Without ever being to a meeting, she dedicated herself heart and soul to making PCVIS a reality.”

I loved her speech about fundraising.  I think it resonates for many of us.

We fundraise for Olivia for a better future. I have a confession to make… The fundraising was completely self-serving.

I want better access to pertinent information about CVI. I want access to the professionals in the field. I want to know what the newest developments and research shows regarding CVI. I want to know the best interventions that can be used for children with CVI. I want it for myself and others in my place.

From the beginning of this journey I have been hungry. Hungry for knowledge, like most of you here. Parents, teachers of the visually impaired, speech therapists, occupational therapist, physicians, ophthalmologists… we are all want to be fed CVI knowledge. This society can feed us.
To start fundraising you first have to be willing to go out on a limb, get out of your comfort zone. Ask for donations. It can be scary, but jump in. We would jump into a pool to save our child if they are sinking to the bottom of the pool. We wouldn’t think twice. Jump in for our children. Save them.
Second; share your story, make a connection, and open up. Open up the dialogue with others about what CVI is. Keep your donors in the loop. Keep them informed of the ongoing fundraising, the intent and goals of the society, and the mission statement.
This past year, our supporters donated to our cause in good faith. I asked for donations to a Society, that wasn’t even a society…yet! And they did. The American Cancer Society started somewhere. This is our starting place.

Some of our examples of fundraising include a lemonade stand, an apple cider stand, thirty-one fundraiser, Jamberry fundraiser, Arbonne fundraiser. Other donations came from a fundraiser from Olivia’s elementary school, my co-workers that took up a collection for Christmas, other anonymous donations, and those that donated through the go fund me page. Don’t discount small fundraisers because they add up. If we all participate in fundraising, this society can grow even stronger and even bigger, helping more children with CVI.


 

Did she smile?  Yes!  And she hasn’t stopped!

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Moms on Monday #11 / Cheyanne from NV

This morning’s Moms on Monday is Archer’s mom, Cheyanne, a passionate parent advocate and fellow blogger.  Cheyanne started a blog about life with her beautiful boy  Archer at http://www.sparkingtheneurons.blogspot.com.

 

Hello, my name is Cheyanne.   I am a mother of a stunning, recently turned 4-year-old boy. His name is Archer. We reside in northeastern Nevada, with the ever important dad, and supportive husband Brandon.

Today I will be sharing some experiences to shed light upon advocacy for Cortical Visual Impairment. But first you need to learn a little more about what is so stunning about Arch!

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He loves to be outside, even when it’s below freezing! Some of the things he loves are finding and throwing rocks, digging in the sand and dirt, and catching rays of sunlight.  While doing all these fun things, his eyes are often closed, held at half mast, or his head is turned away from the actual action occurring.

The exhilaration of sounds, be that animals or vehicles provide a rich auditory experience sometimes creating little giggles or a deep focus, searching for understanding of the origin. Did I mention all the tactile opportunities an outdoor experience provides?

He enjoys sitting at the edge of a door and being a “gate master” opening and closing the door. Now there are many sensory needs he is meeting here. Including the need for movement, a CVI characteristic!

Recently over holiday break, he was frequently requesting to go outside. We began giving him the prompt of “stand-up and look for the round, gold, door knob.” By golly, there he went up on his own, standing against the door looking for the gold, door knob to twist, and open the door so he can go OUTSIDE! His treasures being with his peers, be that at weekly music class, preschool, or going on playdates.

What makes him laugh the most, deep into his belly is his DAD! Whether they are playing with balls, particularly his soccer ball, Elmo, snuggling and singing songs, or on the ground wrestling, his dad is the one to bring out a true authentic laughing session.

As a family we enjoy our down time together. We find it important in keeping a routine for Archer. Music, friends, school and the red garland lining his babysitters hallway are all important to him. After you finished reading this blog post, I invite you to jump over to his blog and read more stories about him growing into life, by visiting http://www.sparkingtheneurons.blogspot.com.

The day I learned about CVI will be frozen in my memory forever, at least in this lifetime. After months of neurology appointments, weekly EEG’s, and daily steroid shots to get infantile spasms controlled, it came time for our 3 month follow-up Ophthalmology appointment.

It was set to be the second time meeting with this particular doctor. At our first appointment he instantly gained Archer’s attention by making bird sounds! Connecting with our little one meant the world to us and made way for us as parents to relax, slightly! He took time to review the big, scary words that had been entering our life, as label after label kept adding up to be included on intake paperwork.

As parents we decided, that I could handle the “routine follow-up” on my own, and daddy went off to work. Archer and I stopped by the jobsite before the appointment and got a good luck hug and kiss from daddy, then off we went.

After asking some questions I thought were routine…

Does your son like to look at ceiling fans? Does he like to look out the window?  Does he ever cover his eyes as if to block out what’s going on around him?

I answered yes to all of these questions.

I added that the red crab on his mobile seemed to catch his eye and make him smile. I explained how we thought it was cute that he blocked his eyes, and joked that was him showing he wasn’t interested in the person trying to “goo-goo-ga-ga” over him.

If you have some knowledge of CVI your light bulb is glowing right now.

And NOW, I know what those questions were leading to.

The delivery of a one-page fact sheet on Cortical Visual Impairment and a referral to the state school of the deaf and blind.

I didn’t understand and was having a hard time letting this information be processed. The doctor re-assured me I would be contacted shortly to get further assistance from the deafblind school. I was in shock, so much shock that emotions were not even present.

I was blank.

I thanked the doctor and assistant, walked out into the lobby to make the routine follow-up and exited the building. Once getting to the car, I slipped into the back seat to breastfeed, my now hungry, fussy baby.

Feeling was coming back to my brain and body.  The hollow pit in my stomach started to burn, to pound, and to get tight all at the same time. I knew this was something big, but didn’t quite know the capacity this “new” label would have on our lives.

I decided to comfort myself with some lunch at a local pizza place. Carrying my baby into the restaurant, I quickly ordered and headed to the bathroom to change Archer’s diaper. Now with a full belly and clean bottom he dozed off to sleep.

I slowly unwrapped the folded single piece of paper and began to read. Disbelief struck as I read the tell tale signs of this diagnosis. My throat went dry, paired with my lungs expanding with deep, wide breaths to keep it together in this public place, not wanting to wake my sleeping child. I asked for a to-go box and paid for my food in a cluster of oblivion.

Again, I sat in the backseat with my stunning boy, admiring the silence of his sleep. It was then time to make the hour long drive home. I called my mom to let her know the appointment was over and that we got some news, but that we could talk about it later. I got on the road. Continuing with the wide, deep breaths, I made it through town and onto the interstate.

This is when the floodgates overflowed. I had to pull off at the next exit and take some time to cry it out.

Cortical Visual Impairment joined the list of diagnoses on this dreary last day of July in 2014.
Archer was just shy of 7 months old. At this point his diagnosis list consisted of the following:   agenesis of the corpus callosum (ACC), uncontrollable seizure disorder, infantile spasms, periventricular grey matter heterotopia (affecting the occipital lobe), enlarged bi-lateral ventricles, hypotonia, and an undiagnosed genetic syndrome, now determined to be a duplication on his 11th chromosome.

Archer’s team began building in Montana beginning with his primary care doctor and LPN. They stood by our sides and listened to us when we came in for our routine 5-day, 2-week, 6-week checkups.   I lost count after that. We knew from the MRI that challenges would be in our future.  These two ladies supported us in hoping for our family to have normal, loving experiences with our newborn. They helped us cherish the newness of parenthood and celebrated with us our stunning little boy.

Quickly, within weeks of Arch’s life, the discussion of which specialist to start with arose.
Those dreaded developmental checklists began. I didn’t get to give many checks in those days, I resorted to drawing smiling faces and our doctor kindly accepted this display of grief.

I quickly stopped reading my “What to Expect the First Years” book, I think by 8 weeks in.
Vision began to be a question I’d say around 4-6 weeks, when my little boy just wouldn’t look me in the eyes while breastfeeding. Occupational Therapy started by 3-4 months of age. He seemed to like the solid red ball.  He would turn away with items displaying combinations of colors and patterns.  The typical over-stimulating newborn toys! Physical Therapy services also started during the Spring of 2014. Yet, there wasn’t emphasis on incorporating strategies to work with his lack of visual engagement.

In August of 2014, we were connected with the state school for deaf and blind and had our first home visit, Archer was 7 months old. APH materials started coming, including a light box. Our biggest struggle was figuring out how to position either Arch or the materials for the best visual access.

We sheeted parts of our home in black fabric, Grandma’s too. We built a little black room for Archer to “play looking” in! It felt as if everything was being forced and nothing came naturally. We lined his highchair tray with black and adhered red duct tape around the edges. We put up a black tri-fold board at the dinner table, or anywhere he was exploring to reduce complexity.

All of these supports had been set-up, before we even opened a case with the state early intervention program. We were ahead of the curve!

By this point there was a never-ending amount of tabs and bookmarks constantly open on my phone and laptop. My new “hobby” of researching was overtaking my mind. Once the official “Cortical Visual Impairment” diagnosis sank in, we began seeing CVI, learning the 10 characteristics. Surprisingly with CVI being the #1 leading pediatric visual impairment in first world countries, we felt like the experts. Even more knowledgeable than most of the service providers, including neurology and ophthalmology, besides our TVI!

Our TVI was calm, quiet, gave wait time, and slowly educated me.  She intervened with  Arch without overloading him. He began to look at the big yellow bird puppet as she slowly moved it to identify strong visual fields. He started to look at mylar on the light box! She had been asking me questions that I didn’t always have answers to. For some I had clear definitive answers! Over a few visits I found out this was her slowly conducting the parent interview questions from Dr. Roman’s CVI Range! It was overwhelming at the time, but set a solid foundation for us to grow from. We found a conference to attend with Dr. Roman and had his first CVI range conducted.

Then we moved to Nevada, a state that is about 30 years behind the curve in vision supports. They have ocular VI knowledge, just not neurological CVI.  It wasn’t taught in their VI programs.

I was the solo expert of CVI on the team.  It felt like I was the solo expert of CVI in the state.

Goals and strategies were set and CVI remained at the forefront of services. There was consideration for most characteristics, besides the most in depth concept of complexity, especially sensory and auditory. He gained visual skills, but his auditory reactions were heavily out weighed. When items were presented with noise and banging he was sure to look.

I’ve heard Dr. Roman say over and over “vision must precede the action” and sadly this was not the case. The providers were open to learning, yet their caseloads were stacked so high it left little down time for “extra” learning outside of the home visits.

Archer transitioned out of EI in Jan 2017, we had the transition meeting, but his seizures returned and we choose to deny services until the Fall. This gave us time to get his health understood before adding more over stimulating situations.

Upon entrance to the early childhood center in Fall of 2017 I learned I was not doing enough to advocate for my child’s needs.
Advocacy begins in your home, with our family and friends. It is all too easy to clam up and keep quiet. Sometimes feeling like you are explaining things over and over, then these people are close to you so offense is taken. The challenge exists consistently.

Fear overtakes you when meeting the milestone of another person becoming the teacher of your child. And for most of us, the services list is long, and teams are big, making advocacy more daunting.  You can feel like you aren’t a part of a team but the outsider.

Mouths drop when I mention CVI accommodations, maybe because they can’t believe I’m requesting, or because the knowledge to understand CVI just isn’t there.

The team listens, it just takes awhile for the concepts to be put into practice. I initiated a CVI schedule built around his school day.  I requested a CVI endorsed team member and CVI Range assessments. They are all willing and open to learn, in fact 3 team members are expanding their knowledge by taking the Perkins 8-week CVI course! We must start somewhere and that is with our voice as our child’s advocate.

Looking back at our short journey of 3.5 years with CVI, in the beginning I wish I would have put more emphasis on latency. Waiting longer for him to visually engage.  NOT impatiently providing auditory cues just to get a reaction.

If your child has recently been identified as having CVI, first, just breathe. Then cry.  Then go outside and take a refreshing walk. Allow yourself to cycle through the grief.

Get connected. You may not understand the language, you will feel like you are studying to become a Ph.D. Your head will feel like it explodes, not on a daily basis, but possibly with each paragraph you read.

Keep going.  Ask the questions.

Ask service providers what their knowledge and understanding of cortical visual impairment is.  Ask if they have ever worked with a CVI student. You are not alone and your child has the right to receive appropriate CVI interventions.

For people that have never heard of CVI, may you know my child sees.

Cortical visual impairment creates challenges with the neurological visual processing of images. To help him understand his environment, use simple language to identify what is going on. He is always listening.  There is no need to be loud or make extra sounds. He will giggle at abrupt sounds.  Help him connect the sound with the visual components by explaining what he is hearing or seeing.

It is my hope you have read to the end!
It is my dream you will share this knowledge with others and keep the conversation going about this underserved population of children with CVI, the #1 pediatric visual impairment in 1st world countries.

Much Gratitude
-Cheyanne Sparks

Sharing a blessing… Help spread his soulful message
ARCHER’S JOURNEY

http://www.sparkingtheneurons.blogspot.com

Thank you Cheyanne for your courageous storytelling! 

 

Adventures in Advocacy / Anger & Courage

Hope has two beautiful daughters; their names are Anger and Courage.  

Anger at the way things are, and Courage to see that they do not remain as they are.  

-St. Augustine of Hippo

I heard this quote during a presentation a couple of weeks ago.  I really needed it this week.

It was a week of preparation for the next round of IEP meetings for my daughter.  As is the new (ab)normal at times like this, I feel overwhelmed, underprepared, and anxious about what comes next.  Every time we go over a new report, we have to compare it to the old reports and I am reminded of what I didn’t know then and then I wonder how much I just don’t know now.  It’s very busy in my head right now.  Reading over past notes and goals I disagreed with leave me frustrated.

I feel like a clenched fist with hair.

(And, nothing else gets done.  Laundry?  Groceries?  You mean we still have to wear clothes and eat?  Haven’t you people done that enough already?  There are reports to read, questions to ask, and schools to visit, dang it!)  

Thankfully, it was also a week in which I was able to participate in a conversation with a group of mothers and a dynamic TVI.  These ladies are determined to make 2018 the year we DO something about CVI on a grand scale here in the U.S.  Listening to the passionate ideas coming from them made me smile and left me with more than a little more optimism than I had that morning.

Now, I feel like a clenched fist with hair and optimism.

This past week, while preparing for the uncertain transition facing my family, I also found myself impressed with the resolve of the CVI families’ growing efforts to raise awareness and to change the current systems of service for our children.

You could say I was living between Hope’s two beautiful daughters if you wanted to be particularly cheesy and need to find meaning in everything you read or hear.  I am particularly cheesy.  I do obsessively look for meaning in everything I read or hear (I wrote the St. Augustine quote on my hand so I wouldn’t forget it, for Pete’s sake.  Now I’m wondering – shouldn’t it be that “Hope has two beautiful parents”?  Wouldn’t that make more sense? That Hope is the result of Anger and Courage?  Will I be struck by lightning for questioning a saint?  Probably.  I warned you it gets busy in my head. My apologies to St. Augustine.)   

As the mother of child with multiple special needs and a vision processing disorder few people understand, I am familiar with anger.

The fundamentals we want for our children are that they are protected, capable, and educated to the best of their abilities.  Easy enough, right?  (Cue the hysterical laughter.  I’ll wait while you catch your breath.)

For parents like us, this includes the extra full time job of raising awareness and educating everyone we come into contact with that – say it with me – CVI is the #1 pediatric visual impairment in First World Countries.  

If you are familiar with anger as well, WELCOME.  You are in good company.

Anger is an energy.  (My apologies to Johnny Rotten.)  

Anger is a building block for Hope.


There is plenty to be hopeful about.

Conversations are happening between families and agencies in the blindness community.  These families are acting straight from the heart out of the all too common mixture of love and frustration we feel as we force  the world to recognize Cortical Visual Impairment and our children.

Soon, there will be a need to ask for more families to reach out, to ask questions, to make themselves and their stories known.

This growing group of parent advocates and TVI will be asking you to join us.  We will need you to reach out to agencies, legislators, and others to educate them about CVI, to let ourselves be counted, and to let them know that our children matter.

We will provide the information you need to feel well-equipped to share your stories.

I hope you will allow yourself to be included.

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This is where the courage part comes in.

You may not think that you want to be someone who will stand up and be counted.

I think that you already are.

Brene Brown, the author and  research professor widely known for her work studying courage, vulnerability, empathy, and shame, describes courage this way:

“Courage is a heart word.

The root of the word courage is cor – the Latin word for heart.

In one of its earliest forms, the word courage meant “To speak one’s mind by telling all one’s heart.”

“Speaking from our hearts is what I think of as ‘ordinary courage.’

As a CVI parent, you operate from the heart every. single. day.  

Every time you make the attempt to educate a doctor or a teacher about CVI, you are speaking from your heart,  You are being courageous.

And, you are making it easier for the mom who will come after you.

Reading this post, researching online, following FB conversations, making D-I-Y materials to accommodate your child’s level of vision – all of these activities come straight from your heart.  Through love, you perform acts of courage every day.

Join us as we speak from our hearts, taking our ‘ordinary courage‘ to a wider audience.

ACT of COURAGE/ ACTION ITEM: 

Send your contact info – Name, Email Address, and State to info@cvimomifesto.com. 

Your information will go on a growing list of families facing the same challenges.  The information will not be given to any other agencies.  This is a mom fueled project.  We will use the information to keep you updated on future opportunities to advocate.  

 

 

 

Adventures in Advocacy / MaryAnne Roberto

Movements do not form out of the actions of one or two people.

When you study history you begin to see the patterns of how change occurs.  The frustrations of a relative few become the conversations and the questions that seek out others.

I thought it was just me

gets thrown by the wayside for

What are WE going to do about this?

CVI Moms, collectively WE have spent thousands of days, months, years knocking our heads on the brick wall that is the challenge of finding an appropriate education for a child with CVI.

For a long time, it thought it was just me.  I found out I was so wrong.  I wrote a blog post about Kate Keller.

MaryAnne Roberto, a CVI endorsed TVI and mother to 2 boys who are blind wrote a powerhouse of a letter using examples from history and her own story.

Read this letter.    Get ready to write your own.

MaryAnne Roberto
Envision CVI Consulting, LLC
envisioncvi@gmail.com

Craig Meador, President
American Printing House for the Blind
January 10, 2018
Dear Mr. Meador

I read your letter on the APH Facebook page about all the exciting things APH is doing in 2018 to “Make Big Things Happen”. As the mother of two boys who are blind, the information about advances in technology that will be highlighted and promoted in the new year was exciting. One of my sons is totally blind and gifted. He will benefit from the innovative technology that brings the written and graphic world quite literally to his fingertips so that he can access the same information as his peers.

Both of my sons are adopted, and spent their early years in orphanages in China where they were left to exist with no interventions, no education, no access to the world around them. The nannies in their orphanages loved them, I am sure, but had no ability to ‘break down the barriers of accessibility’ for them. They lived in a country where children who are blind are not educated, and are thought to be ‘less than’ the typical population of children.

People did not understand them, and gave them less than adequate tools to prepare them for learning and thriving. They were left out of most of what went on around them. And then, they were adopted, came home to a family with a mother who is a Teacher of the Visually Impaired, and father who is a former Health and Phys Ed teacher at a school for the blind. Their lives changed, and they are now thriving, learning, and in have great potential for success in their lives. Sounds like a fairy tale with a happy ending, right?

For the children with Cortical Visual Impairment in our country, there is no “happy ending.” 

Like my sons’ experiences in China they are often left to exist in classrooms and programs where there is little to no appropriate education and have no visual access to the world around them.

They are taught by teachers who have had inadequate instruction in their diagnosis, and treated by medical professionals who often do not understand this complex condition.

Their true potential cannot be known when they are not given a chance to experience it themselves.

‘Band aid’ programming is thrown at them, IEPs and strategies are guessed at and implemented, and team members are satisfied that they are ‘doing the best they can’ to serve the needs of the largest population of children with visual impairments in our country.

And so, when I read your post as a mother of two blind sons, I was of course excited about all APH had to offer for the future. But, to be honest with you, my sons’ needs are well-known to their teachers. They are registered for the Federal Quota, receive all the adaptive equipment they need, and are given appropriate services. Their needs are handled by professionals who write accurate goals, collect specific data, and order necessary materials for them.

At the same time, I read your post as a Teacher for the Visually Impaired, and a Perkins-Roman CVI Endorsed specialist, and I was quite disappointed. Nowhere in your post did you even mention the diagnosis that accounts for more than half of the children with visual impairments in our country. There was not a whisper of new advances in research and evaluations, no talk of new technology such as CVI Connect, no discussion of the growing need to reach the children who are learning to read in new and innovative ways.

Your post screamed of Braille access and instruction and was deafeningly silent on the children who are not taught to use their vision to learn, but are treated as if they have no vision at all.
I am privileged to work closely with many parents who are rallying to fight for appropriate services for their children with CVI. Much like Helen Keller’s parents, these parents are not willing to sit back and let the ‘powers that be’ provide inadequate services for their children. They fight long and hard and are met with resistance at every turn, and mostly from the world of educators of the visually impaired. Their voices are getting louder, and their cries are beginning to be heard. Unlike the Kellers, however, many of these families do not have the money or connections to affect real change, but slowly, surely, they are making changes in their children’s lives.
Yet, like Helen Keller and her family, who waited years to find an Annie Sullivan, these families are waiting as well. They are waiting for appropriate university programs that will educate future teachers on their children’s visual impairment, waiting for schools and programs to recognize the need for adequate services, and waiting for organizations like yours to put their children at the top of their priority list to ‘Make Big Things Happen’.
I write this letter to you as both an Annie Sullivan and a Kate Keller. As a mother of blind sons and a teacher of the visually impaired I know well the roads that both Annie and Kate walked, The road that Annie walked was paved with determination and fortitude. The road Kate walked was paved with tears and desperation for the little girl she loved so deeply. In our country today, there are far too many Kate Kellers whose roads are paved with tears and desperation, as they beg for appropriate services and materials for their children with CVI. The Annie Sullivans are ill-prepared to support those children or are not interested in learning new techniques.
And organizations like yours with national and international notability and resources have added to their frustrations and desperation by completely ignoring their children.

As Annie and Kate, I am writing to petition your organization to provide more comprehensive education and materials that will support children with CVI in our country. CVI Connect is one product that can be added to the Federal Quota program to give access to activities and much-needed data to support the students in programs to develop their visual potential. By promoting resources and education in CVI, you will quite literally ‘Make Big Things Happen’ for children, who like my own sons when they sat in orphanages half a world away, have little access to the world. We can do better for our CVI kids, and we can give hope to the thousands of Kate Kellers who cry in desperation for appropriate programming for their children.
Thank you for taking the time to read this letter. I would be more than happy to speak with you regarding your commitment to improve the lives of children with CVI through the American Printing House for the Blind’s resources and education.

Sincerely,
MaryAnne Roberto
Teacher of the Blind and Visually Impaired
Perkins-Roman CVI Endorsed Specialist

 

Thank you MaryAnne for this important lesson in advocacy!

Now, CVI Moms, what are we going to do about it?  

Moms on Monday #10 / Kate Keller from AL

We are going back in history for today’s Mom on Monday.

Since 2018 will be a year for determined (ok, fed up) parents to advocate for our children with CVI, I wanted to start the year with some historical perspective, and, perhaps, a different spin on a very familiar story.

You may recognize the last name of this particular mom from Alabama, just as you would recognize the name of her very famous daughter, Helen Keller.

We all know the story of “The Miracle Worker.”  Well, I hope we all do.  A few years ago, I learned that one state had dropped Helen Keller, her story and her books (The Story of My Life, Light in My Darkness, Optimism  & The World I Live In, to name a few) from their curriculum.  I don’t know if this is a common occurrence in today’s elementary schools.  I sincerely hope not because the story of Helen Keller’s life and her experiences with her gifted teacher, Anne Sullivan Macy, make for some of the most inspiring storytelling in American history.  Anne Sullivan Macy’s own harrowing childhood and fight for education makes her lifelong dedication to Helen Keller even more compelling.

Mark Twain coined the phrase, “The Miracle Worker” after he read of Anne Sullivan’s success teaching Helen Keller, a young deaf-blind child.  The Miracle Worker became the title of a play and a movie depicting Anne and Helen’s early days together.

It is a story of hope.

It is a story of determination.

It is a story of triumph over seemingly insurmountable odds.

And, as with every great story, there is more to it.

Before the story of the Miracle Worker could happen, there had to be parents who believed in miracles.

Kate Keller

Image:  Kate Keller

Captain Keller

Image:  Arthur Keller

In the 1880’s, after Helen was left deaf and blind following a severe illness at the age of 19 months, Kate and Arthur Keller spent years looking for a teacher who could reach her.   Their efforts went directly against popular opinion that children “like Helen” were not teachable.

Kate Keller wrote countless letters to schools and doctors across the country.  The Kellers often traveled for days from Alabama to see doctors in the northeast. They spent countless hours and dollars seeking out (often discouraging) “expert” opinions.

Years passed. As Helen grew more isolated, her behavior became more difficult to manage.  Relatives called Helen a “monster” and advised them to send her away.

That Helen did not languish in isolation and ignorance is the triumph of her parents who believed that  education (in the opinion of the time, “a miracle”) was possible.

Five years passed before the Kellers were introduced to Anne Sullivan.  Five years.

(As the parent of a child with CVI and multiple disabilities I have often said that the days last forever, but the years fly by.  I think about how long those five years must have been for Kate Keller.) 

helen and annie

Image:  A young Helen Keller seated on a chair holding a doll on her lap.  Anne Sullivan sits on the ground next to her.

 

Kate, Annie, Helen

Image:  Kate Keller, Anne Sullivan Macy fingerspelling into the hand of Helen Keller as a young woman


Helen herself once wrote,

“No pessimist ever discovered the secret of the stars…or opened a new doorway for the human spirit.”

She could have been referring to her own parents whose dogged optimism found the special teacher who unlocked Helen’s fierce intellect and compassion.


Over seven years ago, when my daughter entered the public school system,  I found myself in the uncomfortable position of educating school systems about CVI and convincing people that my daughter can learn if they would learn how to teach her.  

I found myself wondering how Anne Sullivan came to work with Helen Keller.  I wondered what the Kellers had to go through to find her.

I wondered what Kate Keller went through trying unsuccessfully to communicate with her daughter who could no longer see or hear.

I wondered how difficult it was to hope against hope in an age before the telephone, before IDEA, before the Internet.   I struggled to maintain hope and I have those things.

If you are living with a child with CVI (and possibly other disabilities) and you are finding it difficult to find resources or services that can help you and your child, you probably have an idea about how determined and discouraged Kate Keller must have felt at times.

You may recognize how those two conflicting emotions washed over her  – buoying her or drowning her – as she watched her once bright eyed daughter lurch through the house, biting and pushing anyone who kept her from getting her way.  You may have an idea about how desperate she felt to reach her daughter again.

I do.

As a parent of a child with CVI and multiple disabilities, I am grateful to Kate and Arthur Keller for their tenacity and their sacrifice.

Today’s parents are better equipped to fight battles of education and inclusion because of the struggles of parents like them.

Woodrow Wilson (one of the many presidents Helen Keller met in her lifetime) once said

“The man who is swimming against the stream knows the strength of it.”

In honor of Kate Keller and parents of children with CVI across the country and around the world I’d like to update this quote for you:

The mom who is swimming against the stream knows the strength of it.

From history and from our own experience, we know the strength of the stream….(sing along if you know the words)….  a surprising lack of awareness about CVI in the medical and education communities, too few Teachers of the Visually Impaired, no hard, accurate data on the numbers of children with CVI, too few providers/teachers with the specific training necessary to work with children with CVI, low expectations…..

We know the strength of the stream.

Thankfully, we also know that education is not a miracle.

It is a right for every child.

The miracles are the children themselves.

What we do for them will be the best work we ever do.

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Stone Walls and New Starts

Thank you to Ian Christy, Illustrator Extraordinaire, Designer,  & Cool Rockin’ Dad for the fantastic illustration in this post!

Imagine you were walking down the hallway of an elementary school.  As you walked, you saw brief glimpses through the slender window in each classroom door.  In one class, a teacher stands writing at a whiteboard, her students taking notes.  In another classroom, children gather on a rug for story time.

In the last classroom on the left, you see a similar scene.  Students sitting at their desks, raising their hands, doing their classwork.  You notice that one little girl’s desk is surrounded by a single layer of limestone bricks.

The next day, you walk down the hallway again to see the usual business of learning.  Some children are walking around their room going from station to station.  One class watches the teacher do a science experiment at the front of the class.

In the last classroom, however, you see the little girl’s desk is now surrounded by bricks stacked about 2 feet high.  She is sitting quietly. No one seems to notice them. The teacher stands at the front of the class continuing the lesson.  The students continue raising their hands.

You become concerned.  You return every day.  Every day you look into the last classroom on the left. Every day, the wall of blocks  gets taller and taller.  Every day, the little girl sits quietly, growing more isolated than the day before.  Every day, the classroom moves on around her.  You begin to feel anxious for the little girl.

She is being walled in, cut off from her teacher, her peers, her classroom, but no one seems to notice.  You stand at the window day after day and watch as she disappears behind cold, hard stone.  ian access

You knock on the door and ask the teacher why the little girl is being walled in.  She looks at you as though you have lost your mind.  She cannot see the wall.

You run to the principal’s office to tell him that the little girl is being enclosed in a kid sized stone tower.  The principal goes to look for himself.  He doesn’t see the wall either.

Every day the wall gets higher.

You demand a meeting with the principal, the teacher, and anyone else who works with this little girl.

You show them pictures of stone walls.  You bring them research about limestone.  You find articles from education experts who have studied children behind stone walls for decades, and, who have concluded  (surprise!)  that stone walls make learning very difficult.

Children cannot learn when they are cut off from everyone else.  Stone walls = bad for learning.

The team considers your presentation.  They reluctantly admit that – maybe – they noticed the wall from time to time.  An aide admits she tripped over a brick once but didn’t want to make a fuss about it.

Someone suggests that the stone wall may not be the little’s girl’s only problem.

“Sure,” you reply, “ she may have other issues, BUT, that STONE WALL IS NOT HELPING.”

The educational team takes another couple of weeks to develop a learning plan for the little girl.

Every day, the wall gets higher.

At another meeting, the team tells you that a teacher who works with “stone wall children” will take the little girl out of the stone wall to another room for 30 minutes a week.

But, she’s sitting behind the wall for every other minute of the school day!”

Then, Rod Serling comes out of nowhere, pats you on the head, and, says, to no one in particular, ” Ladies and Gentlemen, you’re entering the wondrous dimension of imagination….Next stop, the Twilight Zone.”

And, scene.


This seems ridiculous, right?  Or, sadly, mind numblingly familiar?

I have spent sooooo much time trying to explain to people that my kid does not have easy access to the world with her visual system.

I have walked by “Library Time” (my personal pet peeve for children with vision loss in a traditional school setting) where I’ve seen children with CVI sitting passively at tables in the back of the library while the librarian reads a book the size of a magazine to the children grouped at the front.

I have found “art projects” in my daughter’s backpack that were clearly colored in by the well meaning aide who finished it while Eliza was self-stimming in the back of the room.  (I know this because I went to art time one day and found everyone – Eliza’s aide included- sitting at the table coloring, except my girl, who was laying on the floor, rocking. I cannot make this stuff up.)

How are these examples any more ridiculous than watching in panic as a child is enclosed in stone, a situation that no one else seems to find problematic?

They aren’t.


To my fellow CVI families,

2018 is a new start. 

There will be opportunities for us as a community to work together to raise awareness about Cortical Visual Impairment and to demand that our children be educated in a manner in which they can learn.

In this year and every year that follows, we must demand access and expertise.  

Stay tuned

and

Happy New Year!

 

 

 

 

Love is who we are and no season can contain it…

Our family is having a low key Christmas this year.  We are staying home.

For the first time in awhile, when December rolled around I wasn’t filling notepads with lists titled “Gifts,”  “Meds and Feeding,” and “Sensory Needs.”  I didn’t have to run to Walgreens three times last week to refill prescriptions that always seem to run out if I even think about taking Eliza past the state line.  I didn’t have to cram our Christmas magic in the back of the car around the wheelchair, feeding supplies, sensory toys, and our very patient, long suffering dog, Rosie.  We did not drive 18 hours this year.  Hallelujah, amen, and cue the choir.

And, still, I’m beat.  I wonder if you are too.

This week, I heard the song, “Love is Christmas” by Sara Bareilles for the first time.  This song just spoke to me.   I was compelled to stop and listen.  The lyrics felt like better written versions of my own thoughts.  Nicely played, Sara Bareilles.  It was a poignant reminder of what my priorities are. Stains on the carpet do not even make the list.

Love is who we are, and no season can contain it.  This brought to mind all of the parents of children with special needs who make holiday magic happen on top of the other daily responsibilities that don’t go away just because “it’s the most wonderful time of the year.”

Love is how we do, let no judgment overrule it.  You know how much effort goes into caring for, researching, advocating for the children who love us and who lead us to be the best parents we can be.

Love is who we are.  Yes, I think that sums it up nicely.

If you are feeling worn down this holiday season, I offer you “Love is Christmas” from one mom to another.  Sorry about the ads.  Totally worth waiting those extra 5 seconds.

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AND, if you are looking for something to watch during all of your down time in the next week (Ahahahahaha!  Whew, that was a good one.), may I suggest this video?

I still have a lot to learn about CVI.  So much information about CVI has to be pieced together like a puzzle for each individual child.  Every child is different. Every manifestation of CVI is unique to each child.

I always find Dr. Dutton’s presentations very educational.  It is good information to pass on to an early intervention or an education team.

Toward the end, he emphasizes the importance of being “radio parents.”  I had never heard this term before, but it made a lot of sense.

…………………………………………………………………………………………………………………………………………….

From one mom to another, I wish you and your family love and joy this holiday season and into the new year.  

 

 

 

Moms on Monday #9 / Meredith from IN

Good morning fellow moms and dads of delightful children who happen to have CVI,

Today’s MOM is Lola’s mom, Meredith from Indianapolis, Indiana.

Meredith has become a super advocate for her daughter and for young children with visual impairments in Indiana and Kentucky.  She is one of the driving forces behind Visually Impaired Preschool Services Indiana (VIPS Indiana), a non-profit agency that provides ongoing, best practice early intervention for infants and toddlers with severe vision loss.  She is also one fierce rooftop hockey player.

I got to meet Meredith and Lola through VIPS Indiana when Lola was a baby.  It is hard to believe that she will be 7 in January.

What does Lola like to do? What makes her laugh? What are her favorite activities, foods, etc?
Lola loves to do most anything that involves being outside. She loves parks, playgrounds, swimming pools and she especially likes to help walk the dogs around the neighborhood.

Lola adores her brother although sometimes she doesn’t understand what it means to give him space so she easily annoys him. Their relationship is much like any other sibling connection; they love each other one minute and are fighting the next. Lola especially likes clothes and shoes. We never really knew if Lola could identify colors since she can’t articulate it, but it has become very clear that yes she can absolutely differentiate colors as she hates pink and purple! She wants to wear blues and greens much like her brother. I’m so proud that she can now take off and put on her own clothes—I just wish she’d stop doing it 18 times a day!

Lola’s father makes her laugh like no one else. Now that she is paying attention more to her surroundings, she’ll start laughing when she sees or hears us laughing and the next thing we know—we are all laughing hysterically and we don’t really know why! It’s very sweet!

Lola loves almost all food but her favorites are cookies, pizza, chips, grapes, spaghetti and cereal bars. She doesn’t care for raspberries or watermelon. I wish her weight reflected her love of food—we’ll keep trying to get some meat on her bones though!

What do you like to do as a family?
As a family, we like to find playgrounds that are visually accessible for Lola. It’s sort of become a weekend hobby which is fun because we have learned where to take her and where to stay away from. She really needs high contrast in order to keep from getting bumps and bruises. We try to not keep her in a bubble since the world itself is not Lola-safe, but when she is on a playground that is all brown—for instance—she really struggles.

We also like to go to places like Monkey Joe’s or sensory-friendly gyms. Lola’s ability to sit and partake in an activity with us has increased dramatically over the last year so we’ll play her favorite game which is Hungry Hippo and she likes to color as well as play with Play-Doh. She also loves going to her grandparent’s house so many weekends are spent with them as well.

When did you first learn about CVI?
You know, I had a feeling something was wrong with Lola’s vision from the very second I laid eyes on her after she was born. I was always told that we would immediately lock eyes which indicated, “I am yours and you are mine” but Lola never looked at me. I gave birth to Lola in Costa Rica as my husband and I were living there at the time.  My nurses didn’t speak any English so I wasn’t entirely sure what to ask.

Lola’s Apgar  scores were perfect and the OB-GYN assured us that Lola was a healthy baby girl. We took her home and waited for the eye contact to kick in, but it never did. She sort of looked over our heads as if she was looking at a ghost standing behind us. She also wasn’t reaching for toys and she wasn’t tracking. My mother’s instinct kept telling me something was wrong and I was right.

Lola started to have infantile spasms when she was four months old and treatment to get the seizures under control began immediately. I started researching other symptoms associated with infantile spasms and I came across cortical visual impairment (CVI). When I read the characteristics, I knew right away that Lola had CVI.

How were you given the diagnosis?
As I mentioned Lola was diagnosed with infantile spasms by a neurologist in Costa Rica who was incredibly knowledgeable and supportive. When Lola was about seven months old, Dr. Luna gave Lola the CVI diagnosis yet we were less than shocked as we already suspected she had CVI.

Does your child have other diagnoses you’d like to mention?
Lola has an extremely rare genetic condition called Bosch Boonstra Schaaf optic atrophy syndrome. There are only about 40 in the world with the condition although as genetic testing becomes more available, researchers believe several hundred will be identified. So I thought Lola just had these two conditions, infantile spasms and CVI, I did not realize they were actually “symptoms or characteristics” of something bigger. As it turns out—they are. Lola’s seizures are under control, but she still has CVI, hypotonia, global developmental delay, nystagmus, autism, and more. She sounds complex and I suppose she is, but to us—she’s just Lola.

How was your child’s Early Intervention experience with regard to CVI? 
Are you ready for a shocker? After Lola completed her steroids for the infantile spasms, she was immediately referred to a therapy clinic. When we first walked up to the house (which looked like any other Costa Rican house), I immediately wondered 1) if we were in the right place and 2) how on earth would anyone in this place be able to help my baby? I was grossly mistaken as we met Lola’s very first physical therapist, Moises.

lola-pt-costa-rica

At Lola’s very first appointment, Moises stood at a whiteboard and explained exactly what CVI was to us—graphics and all! It was so comforting to have this information even as upsetting as it was. I learned right then and there something that has stuck with me at every turning point in this journey and that is; knowledge equals empowerment. When you give me information, I feel confident that I can do something with it. And so Lola began to see Moises once a week for PT, but working on her brain “learning to see” was always an integral part of her therapy sessions. She also began to see the occupational therapist, Melissa, who again, challenged Lola’s visual pathway during every single session. We couldn’t have asked for better providers during those early months and we are forever grateful.

Were your providers knowledgeable? Were they open to learning?
Moises and Melissa were more than knowledgeable when it came to CVI. They didn’t have to learn a single thing because they truly understood how CVI was impacting Lola’s development. It was rather impressive especially for being in a foreign country.

So as wonderful as the healthcare system was for Lola in Costa Rica, we knew that long-term it would be better for her to live in the U.S. We moved back to Indianapolis when Lola was just under a year-old. We immediately enrolled her in First Steps, Indiana’s early intervention system.

In First Steps, we had access to a PT, an OT and a speech therapist, but when I inquired about who would be helping us with Lola’s vision loss, I was told there wasn’t really anyone. I called around and found that information to be true and, ultimately, very shocking. How could we have better therapists for Lola’s vision in Costa Rica than the United States? It made no sense to me. But I wasn’t going to give up as I knew how important the first three years of Lola’s brain development was so I persisted until I found someone to help. I met Annie Hughes who was a Teacher of Blind/Low Vision and she worked for Visually Impaired Preschool Services (VIPS), a nonprofit that provides early intervention to young children with vision loss. Vision-specific home visits began and I finally felt as if we found exactly who we were looking for as Ms. Annie was more than knowledgeable!

How do you feel CVI is addressed in your child’s school setting?
Lola attends an Applied Behavior Analysis (ABA) center called Access Behavior Analysis in Indianapolis. While the therapists at Access had not worked with a child who had CVI prior to Lola, they were more than open to learning about it and how to set Lola’s environment up so she could thrive. After some lacking in the public school system, Lola will now have access to a Teacher of Blind/Low Vision who will consult with the center so that everyone understands Lola’s vision loss and how to make the proper modifications for her vision.

What do you know now that you wish you had known at the beginning of your journey as Lola’s mom?
This is a good question. I guess I wish I had let go more. That probably sounds ironic given that as a special needs parent, we may never truly let go, but I wish I didn’t worry myself sick so much. It was all so unknown and unexpected, but Lola was my baby so how could I not worry?

I just wish I would have spent less time immersing myself in the internet and more time enjoying Lola for exactly who she was. I wanted answers though. I wanted to know what her future looked liked. I always wanted someone to look in their crystal ball and tell me that Lola was going to be OK and, of course, nobody ever could. Sure I still worry, but I’m not debilitated by it. I acknowledge that some days will be tough, but they are few and far in between now and I’m very grateful for that.

I also acknowledge that CVI is not the only reason why Lola is delayed. Sure it is part of it, but I have now recognized that Lola is delayed because of her genetic condition. When she wasn’t walking at the age of three, I’d say, “She’s not walking because she’s visually impaired.” Now, I know that children who are completely blind can still walk even at an early age. I just wasn’t really willing to accept that she will always be delayed in some way, but that doesn’t mean she stops progressing. We celebrate the big, gigantic milestones as well as the tiny, most wouldn’t even notice inchstones! They all matter to us!
What would you tell a mother whose child has just been identified as having CVI?
You are not alone is the very first thing I would say. I think I would say please try your absolute hardest to not compare your child with others who have CVI (or even neuro-typical kids as well) as it’s just not healthy for you. I would also say that it does get easier over time. I remember when the ophthalmologist said Lola was legally blind and I about lost it, but what I realized is that Lola was still Lola. Those few extra words didn’t change a thing in that very moment. And honestly, having diagnoses will give your child access to MORE therapies and services. But I used to worry about CVI every day when she was little and now it’s not the first thing on my mind when I wake up. In fact, it’s the one of the last things I think about because CVI is just a part of our lives now.

What would you like for people who have never heard of CVI to know?
I would probably give them my normal CVI spiel about what CVI is, that many times CVI can improve over time (Lola can now see something as small as a raisin on the floor), that even though Lola’s vision has improved she still struggles greatly with her vision, and I’d like them to know that I have no idea how Lola sees the world. I’m willing to give just about anything to have a glimpse of how Lola interprets her surroundings, but I realize that may never happen.

Anything else? Hopes and dreams?
I think we are inundated with what society believes “success” of a child is. It means straight A’s, Honor Roll, graduating from high school, going on to college, finding a love to marry, having children, finding a career, and lots of other stuff in between. I’ll admit that I drank the Kool-Aid, too. When I was pregnant with Lola, my dreams for her were different than what has become her reality, but it’s OK.

View More: http://broadphotography.pass.us/howellfamily2016

Success for Lola means she’s happy, healthy, she loves, and she is loved. That’s all I want for her. Well, I kind of want her to move out someday, too, so I can catch up on nearly seven years of interrupted by Lola sleep!! But in all honesty, I just want Lola to be in a safe environment where people who know and love her look after her. I’m often asked if Lola will live with us forever and my immediate response is “HELL NO!” Now that’s not because I wouldn’t want Lola to live with us until the day I die, but how unfair would that be for her? She’s only six and she already wants to be out of the house so imagine when she’s 22. While she has her challenges, she knows she wants independence and we are going to honor that. She will always need help, but I will die more peacefully knowing that I have her support system in place so that she can live life without me. That’s so hard to write and perhaps I’m sharing too much, but my job as her mother is to think about her future. And Lola’s future will include lots of caring people because it does indeed take a village the size of China when you have a child with special needs.

 

Thank you Meredith and Lola!  

Moms on Monday #8 / Rebecca from VA

Good morning fellow CVI families,

Time is a precious commodity in the lives of parents of children with special needs.

The never-ending loop of Christmas songs in every public place and the constant parade of UPS trucks in your neighborhood means holidays are just around the corner.

During the holidays, the disruption of our routines and schedules makes life more stressful and time even more precious.

Dr. Roman-Lantzy says, “CVI moms are the busiest people I know.”  Now is not the best time to be writing up your story for a blog for other parents. You are in the throes of making holiday magic happen for your family.  That is what we do.

Since I have posted all of the Moms on Monday stories sent to me thus far, I will be today’s MOM.  And, because, I am today’s MOM, this post is late because that is how I roll (or write, or whatever, you know what I mean).

Maybe, after the holiday festivities are over, in the calm of the new year, you will consider sharing some of your stories with us.

Introduction:  I am Rebecca, Eliza’s mom.  She is 11 years old.  We live in Virginia.

(Fun fact:  Over the past 11 years, we have lived in 4 states.  Eliza was born in California.  She received early intervention in California and Indiana.  She has attended schools in Indiana, Kentucky, Florida, and Virginia.  Out of necessity, I have learned a lot about the differences between states in early intervention, early education and public school services. And, BOY, are there differences.) 

Here she is at about 11 months old.

Baby_E[1]

 

About your child: What does she like to do? What makes her laugh? What are her favorite activities? What do you like to do as a family?

Eliza is a social, curious and loving kid. She loves to be near other people, especially other children. Listening to other children playing makes her very happy. Her older sister is her favorite person on the planet. Eliza’s dad can make a noise that makes Eliza giggle like crazy every time. Her favorite activities include going for a walk, swinging, listening to music,  swimming, and jumping on a trampoline.  As a family, we go to the park and take long walks outside when weather permits.  We also take her to the pool as often as we can.

She LOVES music.  We spend a ridiculous amount of time changing the songs on her IPad or her CD player.  If I never hear Waterloo by ABBA again, it would be too dang soon.  I have Ziggy Marley’s Family Time album playing in my head right now. Also, I think we paid for Laurie Berkner’s car by incessantly playing her YouTube videos.  You’re welcome, Laurie Berkner.  My older daughter and I can sing a Laurie Berkner medley at any given moment.  Not everyone can say THAT, now can they?  Silver linings and such.

When did you first learn about CVI?  How were you given the diagnosis?

We knew before Eliza was born that she would have some challenges ahead.  We just didn’t know exactly what those challenges would be.  We were given the grimmest prognosis during the third trimester of my pregnancy before we even got to meet her.  That’s another story entirely.

At 4 months old, Eliza wasn’t tracking anything.  We took her to a pediatric ophthalmologist who called it  Delayed Visual Maturation and told us her vision would eventually develop normally.

“Don’t buy trouble,”  he told me. (Hmmm, well,  Dr. Expert Guy Mansplainer, maybe I’ll just rent trouble and see how it feels.

CAN I JUST SAY HOW ANNOYING and CONDESCENDING THAT PHRASE – Don’t buy trouble – IS? 

How many times are mothers of children with special needs or medical issues dismissed by a doctor who “knows better.”  Too many.  ARGH.)

Which leads me to the truest thing I have ever seen on the Internet.

that which does not kill me

A neuro-ophthalmologist assessed Eliza’s poor vision at 9 months old.  He diagnosed Cortical Visual Impairment and Optic Nerve Atrophy.

We received a diagnosis, but, we also got the expert opinion from the neuro-ophthalmologist.

His expert opinion:  CVI may improve.  It may not.  There is nothing you can do about it.  Wait and see. Take her home, treat her like a blind child, and come back to see me in a year.  

And, what do we know now – 10 years later?

He was so very wrong.

I did not know how wrong he was, but, I could not accept that I would just go home and do nothing.  Just wait and see?  Moms do not work that way.  My heart could not accept his “expert” opinion.

I began researching CVI.  I bought Dr. Roman-Lantzy’s book.  I emailed her.  We met her in a hotel room in California where she was attending a conference with her husband, George Clooney.  (He loves it when I say that.)

Slowly but surely, we learned as much as we could about CVI and made accommodations to Eliza’s home environment.

AND, a year later, after we had worked on developing Eliza’s vision at home, when we followed up with the same neuro-ophthalmologist, he had this to say:

“I do not understand how her vision has improved so much.  I would not have believed it if I hadn’t seen it myself.  I don’t know what you are doing at home, but keep doing it.”  

This was when I handed him the copy of Dr. Roman-Lantzy’s book I bought for him.

I told him I knew he couldn’t “fix” CVI.  The prescription for CVI is educational modifications and strategies specific to each child’s unique learning needs.  It is education for parents, caregivers, and teachers about how the child has access to the world.

I told him I did not expect him to know how to address CVI, but I did expect him to stop telling parents to “Wait and see. There’s nothing you can do.”  I expected him to tell parents about educating themselves about CVI and to expect improvement.

He is still speaking to me, so I think it turned out okay.

Does you child have other diagnoses?  Yes, microcephaly and pachygyria of currently undiscovered cause, CP, epilepsy, global developmental delay, autism (age 4)

How is/was your early intervention experience?  How much time do you have?

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A decade ago, there was very little consistent information about CVI on the internet.  Dr. Roman-Lantzy’s book was still new.  None of the early interventionists in vision loss in California had heard of CVI.

When we moved to Indiana when Eliza was 2 and still eligible for another year of early intervention, I discovered that Indiana did not have ongoing early intervention for infants and toddlers with vision loss.  Just didn’t have it.

Indiana offered families of young children with vision loss a yearly – roughly 2 hour- consultation from one teacher.  A fantastic teacher (Miss Annie from the Blue Bowl Story), but ONE teacher, nonetheless, for an entire state.  She had a caseload of over 300 families.

HOW IS THAT OK?  (It’s not,  but that is another story entirely.  That one has a happy ending, though, for another time.) 

Did I mention – that which does not kill me

I did the best I could to inform the early interventionists and therapists we’ve had over the years about Cortical Visual Impairment and the importance of ACCESS for children with vision loss.

ACCESS is what it is all about – whether the child has low vision from another diagnosis or CVI.

No therapeutic or educational program is going to work for your child if your child cannot access it. Yes, I’ll keep saying ACCESS until I’m blue in the face or every child has actual ACCESS to learning whichever comes first.  (A bluish tinge is more likely I think.)

Imagine you are sitting in a room and the answers to all of life’s most important questions are written on the walls around you – glowing in golden paint.  But, when you open your eyes, you see squiggles, shapes, and lines.  It could be hieroglyphics for all you know.  It has no effect on you whatsoever.

It does not matter how much brilliant, life-enhancing, brain stimulating information is around you, if you can’t reach it.

This seems like common sense.  It is.  But, it is astounding at how many typically sighted folks cannot learn this lesson.

How is CVI being addressed in your child’s school setting?  

I have been the person who has brought up CVI and the issue of access at every IEP meeting we’ve had in every state we’ve lived in.  In her current placement, it has taken me the better part of 3 years to get CVI acknowledged, and to get the school district to agree to getting training for teachers, TVI, and support staff.  It is an ongoing process.  There are ups and downs. I’m learning a lot.  That is all I’ve got right now.

What do you know now that you wish you had known at the beginning of your journey as your child’s mom?   

Honestly, I wish that I had spent less time seeking out therapy after therapy.  I wish I had had regular access to an experienced TVI early on in Eliza’s life who could have told me to slow down.  I wish I could go back and tell myself that no one has all of the answers here and to trust myself more.

I wish I had known that the love and bonding time we had were as important as any hour spent in a clinic.  I wish we spent fewer hours in a clinic and more hours laying on a blanket watching the clouds float by.  Okay, technically, I’d be watching the clouds, but we’d be doing something together.

I also wish I knew as much about CVI as parents today know about it. There has been a lot of new, incredibly useful information to come out of Dr. Roman-Lantzy’s years of study and research, the work of Dr. Gordon Dutton, and Matt Tietjen’s What’s the Complexity framework.

I wish I had asked for more help.  I wish more help had been offered.

What would you tell a mother whose child has just been identified as having CVI?

You are not alone.  There are resources available.  There is a community of parents who have faced similar challenges.

Be gentle with yourself.  Be gentle with your child.  The foundation of any child’s success is the love and trust that grows between a child and her parent or caregiver.  It starts and ends there.

What would you like for people who have never heard of CVI to know?  

This is a population of complicated children, many of whom have survived because of the miracle of modern medicine.  It is time to recognize them and to rise to the challenge of meeting their needs.  There are more children with CVI than you know.  We need your help.

Hopes and dreams? 

My hope for Eliza is to help her get so independent that she develops her own hopes and dreams and that she has a way to tell me what they are.

One of my dreams is that every child with vision loss (whether or not the diagnosis is CVI) gets the educational support she needs from an early age to become independent, productive, and joyful.  Here is my definition of JOY  by the way. eliza in the car

 

P.S.  It would also be great if  no pediatric ophthalmologist or neuro-ophthalmologist ever again tells a parent of child with CVI that there is nothing she can do.

Maybe we will work on that in 2018.  Hmm?

 

 

Adventures in Advocacy / NE AER / Part 3

Be a life long learner about CVI.

Be a life long learner about the brain.

Ellen Mazel, the CVI Teacher (https://cviteacher.wordpress.com), offers this advice to parents of children with CVI and to the teachers who work with them.

In her presentation at the Northeast AER Conference, Ellen shared information on learning assessments and intervention strategies from her extensive experience as a Cortical Visual Impairment Advisor and a Certified Teacher of the Visually Impaired.

Her audience primarily consisted of TVI and COMS, however, everything about the presentation resonated for me as a parent.  Watching presentations from teachers who know CVI always help me broaden my perspective and recharge my batteries.  It gets discouraging being the only person at an IEP meeting who knows what Cortical Visual Impairment is and how it negatively impacts my daughter’s learning.

Sometimes, after a particularly frustrating day, I think, maybe, I am just kidding myself.  Trying too hard.  My girl is a complex kid.  She is non-verbal and has an additional diagnosis of autism.  We are struggling to find a consistent method of communication.  We do not get a lot of eye contact.  Interaction takes time and effort.  It is hard to read her.  It is hard to know what she understands.  

It is all too easy to develop low expectations for a complicated kid like her.  I have fought against low expectations in IEP meetings and in teacher-parent meetings, yet I have struggled to learn how to reach her myself.  

Ellen’s presentation reminded me that this is an ongoing journey.

Regarding the perspective of the parent/teacher:

  • The importance of presumed competence and eye contact.
    • CVI masks cognitive abilityOur children are often not able to maintain eye contact.  (Children with visual impairments cannot be accurately assessed by traditional cognitive tests.  IQ tests are not going to work on this population of children.) 
    • Research has shown that children who do not maintain eye contact get far less social interaction and attention from caregivers and teachers.  Be aware of this tendency to interact less with a child who does not maintain eye contact.
    • Since we cannot tell what a child who is not maintaining eye contact understands, we have to presume that the child understands and continue to teach the child in an accessible way.  
  • If we expect improvements, we will get improvements. The minute we do not have expectations, we are guaranteed not to get improvement.
  • Read articles and attend presentations.  – Research about CVI and the experience offered by CVI Range endorsed teachers will be found at conferences and in journals before you will be able to find it in a book.  

Regarding IEPs and Assessments:

  • The CVI range endorsement is the beginning of your journey NOT the end.  
    • Yes, we need to demand a teacher who has completed the Perkins-Roman CVI Range endorsement, however, it is only the starting point.
  • IEPs need to say “brain based visual impairment,” when diagnosed, by whom, the score, and the result of the Functional Visual Assessment (as it relates to CVI).  
  • When assessing a child, Ellen uses the CVI Range (Roman), Dr. Gordon Dutton’s survey, and Matt Tietjen’s “What’s the complexity” framework.
  • Remember that the parents’ interview gives all important visual history – if vision has improved – consider CVI
  • Best practice accommodations and modifications should be based on the CVI Range score 
  • Strategies need to be embedded throughout the day
  • Ellen puts together a salient features presentation so everyone on the child’s educational team uses the same language.
  • As a consultant, she advises that the IEP includes a 1 hour in-service about CVI and a 1 hour in-service about how CVI affects this particular child
  • Embed the theory that there is something visual in front of that child all the time.
  • Use more CVI supports in place when developing weaker visual fields.
  • Introduce yourself and use the child’s name so she knows you are talking to her
  • Limit touching and moving children while they are trying to look.

I’ll end with Ellen’s explanation of “infused advocacy,” or teaching the children how to problem solve for themselves.

Parents and teachers can start teaching a child to become a self-advocate by teaching her about the characteristics of CVI and by including her in the process of making her own accommodations and modifications. When a child understands that how she perceives the world is different from other people, she can learn to articulate her unique needs. She could ask other children to say their names when they approach her to help her identify them.   She could explain to her mom that cluttered rooms make her feel anxious or scared. She could tell her teacher that new places are confusing and ask for extra time to get to know a novel environment.

This part of a child’s education, learning how to articulate her needs, is so important.  We spend so much time talking about the kids.  Listening to them (or, in the case of a non-verbal children, quietly observing them) is even more important.

This is a fascinating and busy time in the history of Cortical Visual Impairment.  There is a solid foundation of knowledge and a growing current of educational strategies and research.  There is an active and vocal community of families around the world.  There are teachers who can guide us!

At the center of all of this activity remains the children who have to be equal partners in putting together the puzzle that is their picture of the world. 

 

 

 

 

Moms on Monday #7 / Gunjan from PA

Good morning fellow families of glorious children who happen to have CVI,

This morning, we have the pleasure of hearing from Krish’s mom, Gunjan.  Gunjan has been a force in advancing the work of the  Pediatric Cortical Visual Impairment Society and in advocating to raise awareness about CVI . At last year’s PCVI conference, she and MaryAnne Roberto, Perkins-Roman CVI Endorsed TVI, gave a presentation entitled Partners on the Journey:  A TVI and Family’s CVI Experience from Birth to Age 3.   You can find this presentation as a webinar on the Perkins E-Learning site : http://www.perkinselearning.org/videos/webinar/partners-journey-cvi-experience-birth-age-3

Gunjan’s family recently hosted a painting fundraiser for the PCVI Society and raised $1,500.  Here are Gunjan and MaryAnne at the fundraiser.

gunjan and maryanne

Gunjan’s determination is proof that If every parent could make an effort to raise awareness about CVI, to fundraise for the PCVI Society, as well as to challenge their teams to hone their CVI skills, the world might be a better place for our kids.”

Introduction: Gunjan, Krish, 5, Pennsylvania

About your child:  Krishy loves to dance, specifically, what I would term as interpretive dance, because he moves with music so well.  He loves to watch Super Mario YouTube videos, in other words, watching other people play video games on YouTube. He “practices” playing the games on his IPad by moving his finger, as if he is controlling the game, not the player on YouTube. He loves amusement park rides and most of all, he LOVES playing with his older sister and twin brother.  As a family, we do typical family things, like no-pants dance party and going to the playground.

We rarely go to the movies. (We saw Coco yesterday.  Krish doesn’t have the core strength to hold the foldable seat down, so he kept getting smooshed in the seat, besides the vision issues, of course, and the cost of taking a family of 5 to the movies!)  We definitely avoid large crowds, super-noisy places and anything too physically strenuous (for me or Krish, ha ha) to avoid sensory overload. 

When did you first learn about CVI? I learned about CVI the first day that our soon-to-be early intervention vision teacher came to our home for a consult when Krish was around 7 months old.  I had told our physical therapist that Krish wasn’t looking at me. 

How were you given the diagnosis?  We had an amazing teacher of the visually impaired, the famous MaryAnne Roberto, who suspected the diagnosis, and guided us to Neuro-ophthalmology, the Low Vision Clinic, Ophthalmology, and Dr. Roman-Lantzy. 

Our Ophthalmologist gave us the diagnosis, even though she didn’t completely understand CVI.  She did recognize that she didn’t understand.  

Does your child have other diagnoses you’d like to mention?  Krish is a former 26 week preemie twin with failure to thrive, mild hypotonic cerebral palsy, chronic lung disease and GERD.

How is/was your child’s early intervention experience with regard to CVI?  (Were your providers knowledgeable?  Were they open to learning?)  We had an AMAZING early intervention experience.  Most of our team members were open to MaryAnne’s suggestions of how to improve his PT, OT, feeding, etc. sessions with CVI interventions. (I fired the one who didn’t get it!)  MaryAnne had consultation time to work interdisciplinary.  We were able to get services for vision without a diagnosis of CVI. 

How is CVI being addressed in your child’s school setting?  Krish is in his 2nd year of Pre-Kindergarten.  I wanted him to get extra time to start learning sight words and other kindergarten skills.  He is in a typical classroom.  Both his current TVI and classroom teacher have demonstrated time and again their commitment to making him successful.  We are starting to use the iPad as his primary learning tool in school to adapt books, etc.  He has an occupational therapist who is also an assistive technology consultant (winner, winner, chicken dinner!!) She is helping to prepare him on how to use the iPad independently for learning and to use the best apps. 

We recently had a meeting with Dr. Roman-Lantzy and have decided to overhaul Krish’s IEP to include a 1-to-1 aide, so that ALL his materials can be adapted. 

What I learned was, just because he can do it, doesn’t mean he should.   He can look at a book, he can color, he can look up at a calendar on a complex wall, but doing all the things fatigues his vision and he becomes slower and slower at visual processing.  He is quick to fatigue both visually and physically.  If we create a CVI schedule and adapt all his materials, he will not fatigue as quickly and can absorb more information. 

What do you know now that you wish you had known at the beginning of your journey as Krish’s mom? 

In the beginning of this whole process, I wish I could have seen who he has become today. 

I prayed and wished he would walk and talk and see, but it was hard to have hope. 

I was tired ALL THE TIME. 

Also, the CVI resources that exist on the Internet now are amazing.  Even just 5 years ago, I couldn’t find the quality information available now. 

I would tell a mom whose child was recently diagnosed that whenever you are down-trodden and feel like you can’t verbally describe another illustration from a book or talk about the salient features of a hippo, remember that the vision of children with CVI, especially those who start with appropriate interventions at a young age, does IMPROVE! 

Additionally, if your child’s team doesn’t understand CVI, if the IEP doesn’t have CVI strategies that are specific to where your child’s vision is on the CVI Range, if the people who are teaching your child are resistant to learning about CVI,  GET A NEW TEAM!  Do whatever it takes to fight for your child’s right to learn to see. 

What would you like for people who have never heard of CVI to know?  If you have never heard of CVI, I would tell you it is more common than anyone could imagine.  Every child with CVI looks different.  It is a diagnosis that crosses medical diagnoses. 

Hopes and dreams?  Anything else you’d like to add?  Attending the PCVI Society Conference changed my life.  It was inspiring to meet families, educators, and medical providers who are motivated to improve the lives of a child like Krish.  It made me feel like I could do something to advance the cause of CVI.  Also, having Dr. Roman-Lantzy and MaryAnne Roberto as part of our team is like having unicorn glitter in my pocket, just invaluable.  Lastly, if every parent could make an effort to raise awareness about CVI and fundraise for the PCVI Society, as well as challenge their teams to hone their CVI skills, the world might be a better place for our kids.  

Thank you Gunjan and Krish!  May we all find unicorn glitter in our pocket!

 

 

Seeking More Moms for More Mondays

Hello Fellow Mothers of Beautiful Children Who Happen to Have CVI,

We need more Moms on Mondays.

Okay, I do.  I need more Moms on Mondays.

I have thoroughly enjoyed hearing from all of the mothers who have contributed so far.  I learn something new every time a mother shares her story.

Thank you to Jessica, Mary, Subarna, Tiffany, and Lauren.  And, as always, thank you to Bernadette Jackel whose CVI mom experience can be found under The More Things Change widget on the CVI Momifesto home page.

I imagined Moms on Monday as a site a sleep deprived mom might find at 2 a.m. when she has finally gotten her child back to bed only to find that she is too tired and worried to get back to sleep herself.

Just over 10 years ago, when E was a baby, I felt more alone than I have ever felt in my life. The gradual realization of just how many challenges she would have to overcome pushed me farther and farther from “typical” conversations. I became less capable of small talk with friends or “cute kid” anecdotes shared over coffee with other moms.

(FYI New CVI Moms:  A lack of cute anecdotes, mind-numbing sleep deprivation, and an IV drip of caffeine for survival makes you less desirable company at the weekly playgroup.  Also, your new deep purple undereye circles and recent lack of personal hygiene don’t scream “I’m available for small talk!”

Then again, maybe you are remembering to wear deodorant and to rinse conditioner out of your hair more often than I did.  If so, winning! )

If you haven’t lived it, it’s hard to explain the impossible combination of utter physical exhaustion and adrenalin fueled hypervigilance that thrives in mothers of children with special needs.

I personally found that early morning hours were the worst for this cruel phenomenon.  My whole body ached from being awake for too many hours, however, when I closed my eyes, my mind reviewed notes from the day’s therapy sessions or dissected an earlier conversation with the expert of the day.  Sometimes I’d remember that I had an older daughter and was supposed to bring snacks to preschool in 4 hours.  Good times.

Basically, my off switch was broken.

So, I’d get up and start looking up my questions online, or rummaging through my pantry for preschool snacks. (Water chestnuts and saltines, anyone? Anyone?) Those 2 a.m. research times can be very dark and lonely.

Finding stories from other mothers in the middle of the night when you feel as though you are the only person carrying the weight of your child’s world on your shoulders may be a source of comfort.

It’s equal opportunity comfort as well because it also works for middle of the day, afternoon, and evening worrying.

AND, I think we all know that if there was a marathon for hypervigilance and worry, a special needs mom would win it hands down.

We.  Never.  Close.

We never close, but our befuddled brains play mean jokes on us.  For me, after another  night of consoling, bouncing, and worrying, I’d drag myself into a closet.  Then, I’d realize the closet was not the shower.  So, for a moment, I would forget just why I was standing in the closet.  Then, I’d shuffle off to the shower.

I would stand, head bowed to focus the hot water on my aching neck. Staring absently at the tiles on the shower floor, the Barry Manilow song “I made it through the rain” began playing in my head.  Every. Single. Morning.

And, no offense, to 70’s soft rock, or Mr. Manilow, but I am NOT a fan.

It seemed less an anthem, and more of a mean spirited joke produced by my declining mind.

Sometimes I’d find myself wondering which was worse, the new routine of 4 hours of nonconsecutive sleep, or the promise of being serenaded by Barry Manilow in the morning.  (Again, it’s not YOU, Mr. Manilow.  It’s me.)

This is your brain on hypervigilance.

But, I digress.

Please consider joining us in creating a place where moms can find a story they may relate to, or, at least,  friendly company in the chaos.

A place where moms can find themselves “respected by the others whooooooo got rained on toooooo and made it throooooooough.”

Forgive me.  I’m not proud of that.  But, it was right there.  (See how annoying it is?)

I came up with some questions you can answer (see below), or do your own thing.  There is no right way to share your story.

Send it to info@cvimomifesto.com.

I will notify you before your story is posted to confirm your permission to share.

Moms on Mondays

Introduction: Your first name, your child’s first name and age, the state you live in
(If you would prefer to use an initial instead of your name, fine! If you’d like to share a picture, great!)
About your child: What does she like to do? What makes him laugh? What are her favorite activities? What do you like to do as family?

When did you first learn about CVI?

How were you given the diagnosis?

Does your child have other diagnoses you’d like to mention? 

How is/was your child’s Early Intervention experience with regard to CVI? (Were your providers knowledgeable? Were they open to learning?)

How is CVI being addressed in your child’s school setting? (If applicable)

What do you know now that you wish you had known at the beginning of your journey as your child’s mom?
What would you tell a mother whose child has just been identified as having CVI?

What would you like for people who have never heard of CVI to know?

Hopes and dreams? Anything else you’d like to add?

 

Thank you for your consideration.  Thank you for your company.

sorrows borne

Moms on Monday # 5 / Lauren from PA

Good Morning Fellow CVI Families and the TVI who love us (okay – put up with us),

This week’s Mom on Monday is Lauren, mother to 20-month-old Emma.

Lauren started a blog about her experience at Emma’s mother, Emma Bear’s Journey. Their unfolding story can be found at https://emmabear.org.

From the blog:

About me and Emma

I am a full time stay at home mom of an absolutely beautiful and amazing 13 month old girl named Emma.  She was born with hydrocephalus and later developed craniosynostosis during her first few months of life.  She’s been through more in her brief time here than most people will experience in a lifetime.  I admire her strength, resilience and fighting spirit.  This is her journey as well as mine.

Like a lot of children with CVI, Emma faces significant medical issues.  Their successes and challenges are very familiar to my experience as E’s mom.  She openly discusses many of the issues mothers of children with complicated medical diagnoses face – seizures, medical procedures, sleep deprivation, and the roller coaster of emotions that go along with all of this.

She has posted about a lot of CVI DIY projects that have helped Emma begin to use her vision.  The lighted tray and her method of simplifying board books are a couple of helpful strategies.

Lauren also moderates the closed Facebook group, Parents of Kids with Developmental Delays.  It is a great resource for parents to share and to ask questions.

Thank you Lauren and Emma!

Northeast AER 2017 / Adventures in Advocacy / Peg Palmer knows CVI

Good morning fellow families of well loved children who happen to have Cortical Visual Impairment,

I am writing from the Burlington Hilton where the 2017 Northeast AER conference is well under way.  I have heard that the attendance is roughly 300 TVI, COMS (Certified Orientation & Mobility Specialists), Low Vision Therapists, Occupational Therapists, Physical Therapists, with some program directors thrown in for good measure.

This is a great turnout.

Thanks to the efforts of Dr. Roman-Lantzy and people who lead the DeafBlind Projects in the Northeastern United States, this part of the country is well ahead of the curve on awareness of Cortical Visual Impairment.  There are TVI here who received training from Dr. Roman-Lantzy over 10 years ago and have been honing their skills and gaining knowledge ever since.

This conference has a CVI track – meaning there are presentations on various aspects of CVI in almost every time slot.   This may be almost unheard of at a conference like this.  It certainly is from my personal experience in which I show up at conferences and ask questions about CVI just to see what the response will be.  The response is usually a cold, hard stare from the presenter who is probably wondering who let a parent in.

It is refreshing and maddening at the same time.

Yesterday, Peg Palmer, a Perkins-Roman CVI Range Endorsed TVI with decades of experience, allowed me to hijack 15 minutes of her presentation about the CVI Range.

A shout out to Peg Palmer whose professionalism and compassion knows no bounds.  Connecticut is lucky to have her.  Her presentation on working through the CVI Range was very informative.  The videos of students she showed elicited a lively conversation and a lot of questions.

Exactly what we need.

I was able to talk to a room of 50 TVI and COMS (with a few therapists and a couple of program directors thrown in) to give them a parent’s perspective.  I shared some of my story as E’s mom and how challenging it has been to get CVI recognized, let alone understood in classrooms.

I asked them three things:

1.To believe in our children’s ability to learn

The presence of CVI is not an indicator of cognitive ability.  (Source:  The CVI page on the American Printing House for the Blind website)

I told them the Lego Tree story (see post on Lego Trees) and explained how easy it is for teachers, aides, and therapists to develop low expectations for our children if they do not understand the characteristics of CVI.  How many learning opportunities get lost if a teacher does not understand latency and lack of visual reach?  Too many.

2. To reach out to AER and to ask them make CVI a priority in professional development and in university teacher preparation programs

A few weeks ago, I had a meeting with the Executive Director of AER, Louis Tutt, and the Deputy Executive Director, Ginger Croce.  They very kindly answered my questions about AER’s slow recognition of Cortical Visual Impairment.  Only last year, did AER put together a provisional committee on Neurological Visual Impairment.  

Mr. Tutt told me AER responds to the concerns of its members.  So, if AER members contacted the president of their state chapter with the message that more professional development needs to happen for TVI and that future TVI needed to get more training on CVI, progress would be made.

Now we know.

Did you know that parents can join AER as a Associate Member for $98/year?  This is a non-voting membership category for anyone who is not employed in the field such as a parent or caregiver.

FYI:  Here are some email addresses you may find useful.

Executive Director, Louis Tutt – lou@aerbvi.org

Chair of the Neurological Visual Impairment Committee, Susan Sullivan, ssullivan@aph.org

Chair of the Personnel Preparation Committee, Olga Overbury, olga.overbury@umontreal.ca

You can find the president of your state AER chapter at aerbvi.org.

You could tell the powers-that-be at AER that you are the parent of a child with CVI and that you value their dedication to children with vision loss.

You could tell them that children with Cortical Visual Impairment, just like children with ocular vision loss, are not incidental learners (See how that came in handy?).

You could tell them that children with CVI require a different educational approach than children with ocular vision loss.

You could ask them to make educating children with CVI (the #1 Pediatric Visual Impairment in the United States and the Western world) a priority.  That means university teacher preparation programs need to add CVI to their curricula.  That means school systems need to provide extensive, ongoing professional development.

Understand this.  No one has all the answers.  This condition is complicated.  Each child is unique.

What we need to ask is that they join us in asking the right questions and seeking the answers.

3. To seek out more training

I told them about the Perkins-Roman CVI Range Endorsement.  I told them it wasn’t fair to ask them to do more training when that are understaffed and overworked.  I also said the training they got for children with ocular vision loss does not work with our kids.

So, to sweeten the deal, I offered pie.

Really, it’s all I’ve got. me-and-peg-e1510842788984.png

 

Northeast AER 2017/ A CVI Mom meets Vermont

Hello Fellow CVI Families,

Today, at 6:30 a.m., I boarded a plane from Dulles airport in D.C. to JFK, and then, boarded another plane to Burlington, Vermont to attend the Northeast AER conference.

AER is the Association for the Education and Rehabilitation of the Blind and Visually Impaired, the professional membership organization of administrators, teachers of the visually impaired, orientation and mobility specialists, and other vision professionals.

AER chapters around the country have annual conferences.

We CVI parents are often talking about how we need more teachers with expertise in the unique learning needs of children with CVI.

How will this be achieved if we don’t start making our voices and our children’s stories heard?

The kids are already in the classrooms.

Time is passing.

This urgency put me on a plane to where I knew I could reach out to some of the educators who will work with our kids.

Now, I’m staring at my computer screen wondering just what to say to TVI who are already overworked and understaffed.

I will keep you posted.

I can report so far that Vermont has

1. So. Much. Flannel. (a big selling point for me)

2. A restaurant called The Skinny Pancake.  I didn’t eat there, but, I may move in if my return trip doesn’t pan out..

because

I lost my driver’s license somewhere between D.C. and Vermont. (Expletive deleted times 10.)

If I don’t make it back, please forward all future correspondence to The Skinny Pancake at the Burlington Airport.  I will be the woman in the corner passed out in a blissful sugar coma behind a pile of syrupy dishes and covered in crumbs.  Wearing flannel.

I can think of worse ways to go.

 

 

 

Adventures in Advocacy: What would you say to a room filled with TVI?

Hello Fellow Parents of Adorable Children who happen to have a diagnosis of CVI,

If you found yourself standing up in front of 50 Teachers of the Visually Impaired, what would you want to tell them?

This week, I am going to Burlington, Vermont to the North Eastern AER conference.

AER (the Association for the Education and Rehabilitation of the Blind and Visually Impaired) is the professional membership organization for TVI and Orientation and Mobility Specialists.  AER offers approval to teacher preparation programs that meet AER standards.  There are AER chapters  in many states or regions across the U.S. and Canada.  AER conferences are where education professionals in the field of vision loss can get together to learn, to share and to network.

At the North Eastern AER conference, Ellen Mazel and Peggy Palmer are both presenting on different aspects of CVI.  They are very kindly allowing me to have 10 minutes to address their audience of educators.

I am going to Vermont because, as Ellen Mazel says, “Our kids can’t wait.”

But, we all know they are waiting.

I hope to ask the TVI about the number of children they see with CVI.  I am genuinely curious to hear what they have to say.

As experienced teachers, they know that kids with CVI are already in the classroom.
They have been for decades.
They can learn.
They need teachers who believe in their abilities.
They need teachers to have high expectations for them.

They need teachers who recognize the need to get more training to be able to bring the world to these children. The fact that these educators signed up for Ellen and Peggy’s presentations means that they are aware of the need for improvement.

And, the saying goes, “It never hurts to ask… TVI to take the classes to become CVI Endorsed.”

Okay, I added the last part.

At the risk of becoming the broken record all CVI parents become, CVI has been discussed and researched for decades.  CVI is the most common visual impairment in the Western world.

Yet, only last year did AER, the professional organization for educators for blind and low vision students, agree to form a provisional committee on Neurological Visual Impairment.

There is a disconnect here somewhere.  I think the disconnect is the lack of urgency for real progress in the education of children with CVI.

The national office of AER is in Washington D.C.  Since I live close to D.C., I recently made an appointment with the Executive Director, Lou Tutt.  I wanted to find out about AER’s stance on how to prepare their members to teach children with Cortical Visual Impairment. Mr. Tutt and Ginger Croce,  Deputy Executive Director, very kindly took the time to answer my questions.

What I took away from the meeting was the following:

  1. AER takes guidance from its members.  According to Mr. Tutt, if enough members demanded more information and training on CVI, then AER would comply.
  2. Reaching out to the head of the Neurological Visual Impairment committee would be a good way to continue the conversation.  I have not done this yet because I wanted to attend the conference first and get more information.

If there is a disconnect, maybe parents are the connection.  Maybe our urgency is what is needed to get CVI addressed by the organizations that create policy and teacher programs.

Let’s see what happens in Vermont.  I will get the chance to ask a group of members to strongly encourage AER to approve more training for teachers who will be teaching children with CVI.  I will suggest they get the Perkins-Roman CVI Range Endorsement.  I will offer them pie.

I will let you know how it goes.

And, remember, if you have something you would like to tell them, send it in to info@cvimomifesto.com.

 

 

 

 

Adventures in Advocacy: Never Underestimate the Power of Pie

Hello fellow parents of glorious children who happen to have CVI,

Let’s talk a little advocacy with a dash of history, shall we?

When CVI Momifesto began in September, Dr. Sandra Newcomb, a Perkins-Roman Endorsed Consultant and Technical Assistance and Education Specialist at Connections Beyond Sight and Sound at the University of Maryland, left the following comment:

Historically, it has always been parents that brought about change.  Parents were behind IDEA (Individuals with Disabilities Education Act, a law that makes available a free appropriate public education to eligible children with disabilities throughout the nation and ensures special education and related services to those children) behind all the change in service delivery for autism, and the list goes on….

Not that you as parents need one more responsibility, but that is where the power is in special education.

Think about it.

In the not too distant past, children with special needs were not educated in schools.  They were not educated, period.  Parents were encouraged to “put away” their children and to continue with their lives.  “Throw away” is more like it if you look at the soul crushing history of institutions in America.

Parents went against the advice of medical experts and brought their children home.  Parents came together and began programs to teach their children.  Parents approached their legislators demanding that their children had the same right to a free and appropriate education as any other child.

We are the power that made special education happen. 

The fact that we have an IDEA to refer to and resources to look for (even if they are hard to find) is because of the parents who came before us.

Here’s what we, as parents of children with vision loss, need to understand as we blaze our trail.

Children with vision loss are considered a “low incidence” population. 

If you have had any experience trying to get a teacher with expertise in CVI in a public school district, you have learned that it is a challenge to get attention (and resources, funding, staffing…) for your child with this “low incidence” diagnosis.  You may find yourself in an IEP meeting or sitting across from a school administrator and hear those words “low incidence.”  Then, you may find yourself walking out of the meeting without getting anything you requested because “low incidence.”

Can I just say how much I dislike the term “low incidence”?

Some school systems and state legislatures have a tendency to forget that these populations of children need resources and funding too.

Here are a couple of thoughts I have about this.

#1.  There is no comprehensive, national system of data collection keeping track of children with CVI.  Some states have “soft” systems like a registry of children with certain medical diagnoses, but, doctors and hospitals are not required to use it.  Also, many state registries do not list Cortical Visual Impairment (or other pediatric visual impairments).

How can you keep track of a diagnosis if it is not even a box you can check off?

To school systems and state and federal funding streams, CVI is a low incidence population within a low incidence population.  Read: lowest possible priority.

But, if no one is counting, no one really knows the true number of children with Cortical Visual Impairment.  Often, children with CVI get put in a category called “multiple disabilities” and the vision loss goes unrecorded.

So, “low incidence,” my Aunt Fanny.  If you aren’t counting, then I call foul.

Remember, it is common knowledge that CVI is the #1 pediatric visual impairment in developed countries.

#2.   If children with vision loss are a low incidence population, then, to be heard, we, the parents, have to be loud, focused, and repetitive.  (Jessica M. said in her Moms on Monday post that she had become “a broken record.”  That’s what I feel like too.)

We need to start talking, often and loudly to certain groups of professionals.

We need to talk to teacher training programs to tell them we need more teachers who have been trained to work with children with CVI.

We need to talk to ophthalmologists to get CVI identified early and accurately.

We need to talk to legislators to change existing laws to require more specialized training (The Cogswell Macy Act needs your support!.)

We live in a world of constant distractions.  It is hard to get people galvanized around a single issue.

As you read this sentence, you have received 10 new posts on Facebook, 3 tweets, 15 emails, a few texts, your dog is pacing by the door in need of a walk, your child needs a new diaper, and your boss wants that report yesterday.  Am I wrong?

Every waking minute it seems as though we are bombarded with a parade of worthy causes and the resulting impulse to respond to them.

How can we start highlighting our worthy cause in today’s frantic world of modern media?

Here is something old school I’m doing every chance I get because something has GOT to give.

Talk to future teachers

From my experience, folks do not become special educators and/or teachers of the visually impaired to get rich quick.  They have a genuine desire to improve the lives of very vulnerable children.  They work hard.  There are not enough of them.  They may not have access to enough resources to do what they want to do in their classroom.

They care.

Wherever I live, I reach out to the special education department of the local university. In Bloomington, Indiana, I spoke to special education students in Dr. Melissa Keller’s class at Indiana University.  In Maryland, I spoke to students in Dr. Sandra Newcomb’s class.

Most recently, in Virginia, I reached out to Dr. Kim Avila, the head of the Visual Impairment Consortium, at George Mason University.  She has been kind enough to allow me to speak to her class of future teachers of the visually impaired for 2 years in a row.

On Monday, I joined a conference call to speak to this year’s group of future TVI on the first day of their unit on Cortical Visual Impairment.  The course is offered as online learning.  One of the students lives in Alaska and was compelled to become a TVI because of the number of children she is seeing in Early Intervention with CVI.  (She is my new hero.)

I told them about E, where she began and where she is now.  I told them about how challenging it has been to find teachers who had heard about Cortical Visual Impairment or what to do to help children with CVI learn.  I told them that teacher preparation programs for TVI do not typically include Cortical Visual Impairment in their curricula.

Then, I mentioned the Perkins-Roman CVI Range Endorsement.   I asked them to consider becoming endorsed because they will have children with CVI on their caseload and they need to be prepared for them.

Because, why not?  How is anything going to change if we do not start asking for things to change?  We have to start a conversation to raise awareness.  If these future teachers do not know that they will experience children with CVI in their classrooms, then they will not know to look for specialized training.

To seal the deal, I offered a homemade pie to anyone in the class who becomes CVI endorsed.

Even to the lovely lady in Alaska.

I would gladly freeze dry and Fed Ex a pie to Alaska, to the North Pole even, if it would increase the number of teachers who can help children with CVI have access to their environment.  So far, no one has taken me up on it.

But, the offer stands.

I do not kid about pie.

Future educators need to hear your experiences.  And, their professors would love to have your input in their classes.  You could research special education classes or TVI preparation classes at a university near you.  You could write a professor and say, “Hey, I’m the parent of a child with Cortical Visual Impairment.  I would love the chance to share our experiences with your class.”

If you do, tell CVI Momifesto how it went!

There might be a pie in it for you.

 

 

pie

 

 

 

 

 

Moms on Monday #2 / Mary from Ohio

This week we have the privilege of hearing from a tenacious mother and advocate from Cleveland, Ohio.  There are so many parts of this story that are familiar to me and are important for other moms to hear. She has a lot to teach us.

Take it away, Mary!

Dear CVI Family,

My name is Mary and I am a mother of an eighteen year old daughter.  That’s right, eighteen YEARS I’ve been at this.  I am tired and I am worn, but I haven’t given up.  

You see when my daughter was born we knew she had a very rare chromosome disorder that we couldn’t do anything to change.  We knew she had a very serious heart muscle issue that we couldn’t do anything to change.  She had feeding issues and couldn’t nurse. She threw up and was later labeled a failure to thrive.  She had this vision issue that we weren’t sure about.  She couldn’t hold her head up.  She couldn’t latch on or drink from a normal nipple.  Her delivery was an emergency C-section.  She was born not breathing. The cardiologist sent her home from the doctor saying they didn’t know what her prognosis was because her heart function was so poor.  

So, can you see that our focus was on her surviving?   And, way down the list was her vision.  

Eighteen years ago, CVI was such a new diagnosis that her vision issues flew under the radar of importance.  And, you don’t know what you don’t know.  

Finally, at 9 months we were told to go see an ophthalmologist who explained that my daughter had a visual processing issue that was brain based and that time might help.

(Does that sound familiar? And, I can’t believe parents are still hearing the same thing today. )

So, in the blur of everything else we were dealing with we accepted the “expert’s” opinion and continued on with helping our daughter to make developmental gains.  By this time, her heart muscle function had greatly improved and we were moving out of “survival” mode into helping her become all that she could become.

For years my daughter did so much therapy.  And, the puzzling question for so many of us was that she didn’t seem to have any intrinsic motivation to do or learn.  Why was that? Therapist after therapist were puzzled by it.  

By this time, we had seen another ophthalmologist who told us the same thing about her vision. “It’s a visual processing disorder.  Her eyes are physically just fine.  There’s nothing that can be done. Don’t waste your money on vision therapy.” Again, I took the “expert’s” word for it.

She learned to walk by age 4.  By this time, it was clear that she would have developmental challenges her whole life. Trying to help her was frustrating and puzzling.

But, like all of you, I have that “mom gut.” I knew what worked for her.  Plus, I took an awesome autism course that helped me understand that there is almost always a reason for every behavior.  I learned through this course that lots of children with sensory issues have trouble picking out what should be salient.  Yep, that’s the word that was used.  

So, still not knowing about the CVI, I began narrating to her to help her focus on specific things that might be salient.  She struggled in complex environments.  She didn’t make eye contact.  She looked above our heads.  She didn’t look right at things.  She looked and then looked away before reaching for things.  She avoided toys that had too much going on. (As I type this, it is painful because if I had only known back then what I know now, I could have helped her so much more.)  

But, you don’t know what you don’t know.  

I knew that when I talked her through things she was calmer.  She loved Elmo.  So, I would use Elmo as a way to get her to motor plan getting to things. (I put Elmo everywhere.)  There were so many things that I did because I knew they worked for her but I didn’t understand why they worked.

My daughter was in and out of public school.  She started in an inclusive preschool when she was 5.  It was overwhelming for her.  She would often “freeze”.  She didn’t engage. The words, “learned passivity” were used.  So, I blamed myself for causing her to freeze and not initiate.

The public school approach with my daughter was not right for her but it was all they knew to do.  There wasn’t even a vision specialist on her IEP team.  I didn’t know to ask for it.   My daughter was not making progress in the public schools.  Often she would make great progress at home over the summer and then go to school and the progress would stop.

Here are the things I began advocating for:

1)  Wait Time    

2)  Narrating for her to help explain situations  

3)  Quiet lunch with a few willing peers

 4)  A consistent one on one aide for her whole day  

5)  A study carrel for her to work.  

Don’t those things sound familiar?  But you don’t know what you don’t know.   I finally requested a TVI evaluate her as a part of her Evaluation Team Report.

I had heard about CVI by then.  I had Googled some of her unusual visual behaviors and CVI had popped up.  When I say popped up, it didn’t pop up like it does now.  There were a few, and I mean a few, sites and a few articles.

The TVI knew about CVI and even had a CVI evaluation kit.  He evaluated her and firmly explained that she did not have CVI.  There were too many things that she was able to do visually that were not consistent with CVI.  The expert had spoken and although I was doubtful, I didn’t question it.  After all, you don’t know what you don’t know.

After a few years of trying to make the school setting work for her,  I advocated for and got an outside placement for her at an autism center.  There was still no diagnosis of CVI but because the center was used to working with kids with sensory processing issues,  it was a better fit than the public school setting.  At this same time, I began taking her to a behavioral optometry place for vision therapy.  They recognized right away that she was using her peripheral vision and began working with her to use her central vision.  It was a vision therapy approach and it was a start.  She began to use her central vision in fleeting moments.  She also started to do very short tracking.

By this time, my daughter was about 14.  We had seen ophthalmologists, neurologists, a behavioral optometrist, and a TVI who had some knowledge of CVI and, still, no one had diagnosed her formally with CVI.   

I was beginning to up my research of CVI because there were too many things that my daughter did that were part of the characteristics.  After 14 years, I was tired of advocating for my daughter without any diagnosis or support.  So many times, I was told to let the “experts” know best.  I was tired.  And, I felt all alone.  

My daughter switched school placements at age 14.  Her school placement was at a mostly outpatient private therapy center.  They often brought in speakers to educate the therapists.  One of the speakers that visited was Dr. Roman.  One of my daughter’s school therapists was in attendance.  She called to tell me that she was sure my daughter had CVI.   

About 6 weeks later, at the age of 14, my daughter, myself and several of her therapists from her school placement went to Pittsburgh to see Dr. Roman.  My daughter was diagnosed on the CVI range as Phase II 5.25-6.  Thankfully, Dr. Roman said that it was remarkable how well my daughter had progressed even without the diagnosis.  

After all those years, the puzzle piece clicked.  I now knew what so many of you already know.  I knew why my daughter’s vision was so puzzling.  I knew that it was something that could be helped.  You see, I had always said that I knew that the chromosome disorder had caused an organic development issue that caused her body/brain to be formed differently.  But, I also kept saying that there was a part of her that seemed like it was being rehabbed.  There’s that “mom gut” again.  

So, at age 14, after years of advocating, fighting and so much frustration, there was finally a diagnosis. 

There was credibility for all the things that I had advocated for.  And, there was hope for the future because more than ever I knew how to help her.  I also had the hope that her visual processing would get better. 

Like you want for your children,  I  wanted her to become the best “her” she could become.  Plus, I wanted her to learn to enjoy her world, not be afraid and frustrated by it.   She seemed way smarter than she was able to show. 

We began the difficult process of teasing out which behaviors were because of cognitive challenges and which behaviors were because of her CVI issues or which were a combination of both.  You see, because everyone knew that she had cognitive issues, that is what would get blamed and so the supports given were for cognitive challenges.  

Now, I knew how to support her vision so she could continue to develop.   At the age of 15, after having a year of much more focused appropriate supports she had made great progress. She was still in  Phase II, but  had progressed to 6.25-7. Hurray for neuroplasticity! You see, you don’t know what you don’t know.  But, when you know, you can do better.  I was learning to do better!

At age 18, she is in Phase III 8-9.  She will always have cognitive limitations and global limitations.  I can’t do much to change those.  But, I can help her vision improve.  And, she is enjoying her world more.  I am still tired.  But, I’m not alone.  And, I’m grateful for this blog which brings us all together to share our stories and our experience.  

Thank you for your insight and your willingness to share what you’ve learned with us.   

 

 

 

Calling CVI Moms: The Conversation Continues

sorrows borne

Hello Fellows Moms, Dads, and Folks who love a child with CVI,

When reading sites about CVI, I see plenty of conversation about CVI among certain researchers, doctors, and teachers. It is happening more now than ever.  This is a good thing.

But, where are the stories of the families?  Of the children themselves?  Where are the stories of the people whose lives are affected by CVI 24 hours a day? 

I love the quote,

“All sorrows can be borne if you put them into a story or tell a story about them.”

It is attributed to the author, Karen Blixen, who wrote under the name Isak Dinesen.  (She knew a thing or two about sorrow.)

If you belong to this community of families, it is highly likely you and your family have withstood a significant amount of sorrow on this journey.

Children with Cortical Visual Impairment (Cerebral Visual Impairment) are children who have endured much at a young age.  Some were premature and suffered a brain bleed.  Some had a stroke in-utero or soon after birth.  Some had hypoxia (not enough oxygen in-utero or during birth).  Some have brains with atypical structures.   Some have seizures.  Some have metabolic issues.  Some have genetic syndromes.  Some children acquire CVI at a later time after a traumatic brain injury.

Some children have any combination of the above.

The conditions which cause CVI are complicated and vary widely from child to child.

As the parents of these children, we bear witness to what our children endure.  There is sorrow when you see your child suffer.  There is frustration, and certainly, sorrow in navigating what your child needs to learn and to thrive. It can be so isolating and confusing.

Stories can help us bear the sorrow.  Stories can help us navigate the unfamiliar territory of having children with a complicated neurological visual impairment.  Stories will encourage more medical and education professionals to recognize and understand CVI.

We need your stories.

Jessica Marquardt from North Carolina was the first Mom on Monday.  It is an honor to share her story.

We need to hear your story.  It’s easy.  It’s important!

Read the questions below.

Answer the ones you would like to answer.

Submit them to info@cvimomifesto.com.

Parent stories will be posted on Mondays.

Moms on Mondays

Introduction:  Your first name, your child’s first name and age, the state you live in

(If you would prefer to use an initial instead of your name, fine!  If you’d like to share a picture, great!)

About your child:  What does she like to do?  What makes him laugh?  What are her favorite activities?  What do you like to do as family?

When did you first learn about CVI?

How were you given the diagnosis?

Does your child have other diagnoses you’d like to mention?  (Totally up to you)

How is/was your child’s Early Intervention experience with regard to CVI? (Were your providers knowledgeable? Were they open to learning?)

How is CVI being addressed in your child’s school setting? (If applicable.)

What do you know now that you wish you had known at the beginning of your journey as your child’s mom? 

What would you tell a mother whose child has just been identified as having CVI?

What would you like for people who have never heard of CVI to know? 

Hopes and dreams?  Anything else you’d like to add?  


Looking forward to your stories and meeting your beautiful children!

 

 

 

 

 

 

 

 

 

 

 

Adventures in Advocacy / Oxford Eagle

Adventures in Advocacy: A fantastic article about the Stearns family and their recent trip to D.C. to advocate for paid maternity leave and early intervention. Oscar and Jack’s parents made sure their legislators heard about their sons who overcame so much to be where they are today.

Bravo, Susan and Dan! Well done, Oscar and Jack!

Oscar and Jack

We were the cover story for today’s Oxford Eagle Gazette! Read here!

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Adventures in Congress

Oscar and Jack

So far today our little lobbyists have met with Senator Wicker and Representative Kelly. We were supposed to meet with Kelly’s staff but he called us in and met with us himself. I seriously doubt we are effecting change but we did get our message across about lifetime caps in healthcare funding and investing in early intervention services. Winning moment so far: Senator Wicker came into his constituent meet and greet and said “Good Morning!” To which Jack replied “Nice to meet you!” Senator Wicker said “that’s young Jacob Stearns from Oxford.” So we made an impression!

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