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.

The actions you take from the heart are courageous actions.

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 incompatible combination of utter physical exhaustion and adrenalin fueled hypervigilance that thrives in mothers of children with special needs.

I personally found that the wee morning hours were the worst for this cruel phenomenon.  My whole body ached from being conscious 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 neurologist, developmental pediatrician, etc.  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 it works for middle of the day, afternoon, and evening worrying as well.

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. As I stared 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 cruel joke produced by my quickly 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,

I adapted the title of this post from the American Printing House for the Blind page on CVI (http://tech.aph.org/cvi/).

Their title is CVI:  The conversation continues….

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.  And, I have probably missed other causes.  My apologies.

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 children suffering or struggling.  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 ultimately move us in the right direction of having more medical and education professionals who 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!

 

 

 

 

 

 

 

 

 

 

 

“What if Christmas…perhaps…means a little bit more!”

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

This post is about gratitude for people who made my Grinch’s small heart grow at least 3 times this year.  (It’s just not the holiday season until someone quotes the Grinch.  You’re welcome.)

1. Javier

He is the kindest bus aide I have ever seen.  (And, believe me, I watch.) He does not know I am writing this, so I will call him “Javier.”  Javier greets us every morning with a big smile. He gallantly offers her his hand as they count the bus stairs together.  He asks her permission to help her scoot over and tells her when he is putting her bus belt on.  Eliza smiles when she hears his voice.  She takes his hand without any reservation.  She knows she is safe with him.  Because of this, I would offer this man a kidney without any reservations whatsoever.

Javier has seen me in the most mismatched excuses for sleepwear/sportswear as I roll out her chair every morning.  The man has never seen my hair brushed, folks.  He has also chided me for going out in the cold without a coat. In the rush of the morning routine, I hadn’t realized I needed one.  My mother would have approved.

Here’s the thing that GOT me.  One day, as Javier lowered the ramp to load her wheelchair, I noticed he was wearing a suit and dress shoes.  I thought maybe he had a job interview or a court appointment.   I didn’t think anymore about it, until a week later, when he wore another suit and tie.  I complimented his outfit again. He smiled, a little embarrassed by my effusiveness.

I realized the suit was a regular sort of thing, so I complimented him again the next week.

Javier shrugged and smiled.  “I just want to look professional.”

Shivering in front of our house, wearing mismatched socks, grubby sweatpants, and my husband’s t-shirt, I took that in.

I remembered one morning early this year when I went to Eliza’s school to watch how the bus transition was working.  Another bus carrying children with special needs was in line before Eliza’s bus.  The driver opened the door and came down the stairs to unload the equipment.

That guy wore a t-shirt that said – well, how do I put this?  The shirt had the emoji that most resembles chocolate soft serve (if you get my meaning) and it said “@#*t happens.”

What kind of message does a shirt like that send to the children and their families? And, to the other students?

Scowling, I watched “Mr. Soft Serve” lower two very complicated kids in wheelchairs to the ground without a word or a touch.  He transferred the boys like he was delivering boxes for UPS.

When Javier told me, a little sheepishly, “I just want to look professional,”  I realized the effort he put in to look his best for my girl and, I suppose, for me.

I had a sudden urge to hug this man and to make him president of the universe.  I did neither, since a restraining order from our local school system is one headache I do not need.  They already think I am weird enough.

hands

2.  5th graders rule the world

Eliza attends morning meeting at a 5th grade classroom in her school.  She goes in with an aide and her IPad or a Big Mack button to answer questions.

She also goes in with the widest smile I have ever seen on her face.

The students have welcomed her.  They call her by name when she comes in to see them and when they see her in the hallway.

Earlier in the semester, their teacher, Mr. K, and the principal allowed me to give a brief presentation to this class.  I talked about her diagnoses, especially CVI.  I asked them to identify themselves when they greet her because she has a hard time identifying people – even people she knows. I explained that she has difficulty with depth perception so she may walk unevenly and she might need to hold someone’s hand.   I told them it is a challenge for her to take in too much information – visual and auditory – at the same time.  I asked them to be patient with her and to understand that she can understand them, but that she needs more time.

Eliza’s teacher has been instrumental in scheduling the time necessary for these vital moments of social education for her.

This week, she sent me a few pictures of Eliza and some of the 5th graders outside during a break.  They were walking with her, holding her hand.

These are the first pictures anyone has ever given me of Eliza hanging out with a child who is not her own sister.  So, there’s that.  Where ARE the tissues when you need them?

Ifyou read an earlier post, you may remember that 3 of the girls have come up with a project to make a communication device for Eliza.  They prepared a PowerPoint for Eliza’s teacher who sent it to me.

The girls met with us to try different materials for the switches.  They showed me, um,  wires and things, and there was a laptop involved… ok!  I don’t get this stuff!

As I sat there and tried to understand the technology speak coming out of their mouths, I realized

  1. They will be leaders some day. 
  2. Their compassion and their technological expertise will create new opportunities for children like Eliza. 

Last week, they presented their project to the PTA who agreed to fund the materials needed to make this device.  

They met a kid.  They were curious.

They saw a problem.  They came up with a solution.

They found a way to make it happen.

We will see what happens next after winter break.  I am looking forward to learning from these young ladies who are as kind as they are intelligent.

Yes, when 5th graders rule with world, we will all be just fine.

hands together

Here’s to the people who are gifts in our lives.

They brighten our days just by caring and extending a hand.