Moms on Monday / Jessica’s Highlights from the CVI Symposium 2018

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Hello fellow families!  Did you survive Spring Break?  These periodic weeks off of school are very appropriately named aren’t they?

Spring. Break. 

After 3, 4, 5… straight days of my delightful, strong willed, curious, demanding pre-teen who happens to have CVI and other diagnoses, I feel broken.   2 more days.  

Two.

More.

Days.

Spring Break.  I give.  Uncle! You win.  

But I digress.

There is an event on the horizon you may want to know about.

The 5th Annual Perkins CVI Symposium

From Perkins website:  Please join us for a rare opportunity to listen to top experts in the field on Thursday, July 11 and on Friday, July 12.

Engage in collaborative efforts to advance progress related to the challenges and complexities with CVI in the areas of medicine and research, assessment and best practice, as well as parent/family education and advocacy.

Here is a link to find out more about this opportunity to meet researchers, doctors, teachers, advocates, and fellow families – trail blazers all.

http://www.perkinselearning.org/earn-credits/onsite-training/cvi-symposium

 

Perkins continues to lead the charge on raising awareness and training families, educators, and therapists about CVI, the #1 pediatric visual impairment in first world countries.

Perkins is committed to building capacity – teaching education and therapy professionals how to evaluate and to work with children with complex visual processing impairments.

Last year, several CVI Moms and Advocates attended the 4th annual symposium in April.

people at perkins
CVI Moms Jessica, Anna, and Rachel at the 2018 CVI Symposium

Jessica (G’s mom and the very first Mom on Monday) attended last year’s symposium.

She was in good company with several other CVI families who are advocating for better educational outcomes for their children.

And, she has been busy!  Jessica created a podcast to highlight the stories of families of children with CVI.

 

Kaleidoscope: The Cortical Visual Impairment Podcast

Here is a link to this wonderful collection of stories:

https://podcasts.apple.com/us/podcast/kaleidoscope-the-cortical-visual-impairment-podcast/id1386780362

Here is Jessica’s reason for advocating and traveling all over the country to learn what she can learn about CVI.

Grace at ipad
Jessica’s daughter Grace learning to read on her Ipad

But I digress.

After attending the 4th Annual CVI Symposium last year, Jessica was kind enough to share some of her impressions of the meeting and the speakers.

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Jessica’s Highlights from the 2018 CVI Symposium

The all day symposium was a “rare opportunity to listen to top experts in the field discuss current research and practice related to brain-based visual impairments.”

“The CVI Symposium sustained me.  It is an amazing feeling to walk into a room and feel like you’re with your people.

 

our people
Our people – CVI Families Unite at CVI Symposium 2018

I felt that same way last year at the PCVI conference.  Spending in-person time with other parents of kids with CVI gave me strength and courage.

Hearing from experts on CVI from the medical and education professions energizes me to keep fighting to get Grace everything she needs.”  Perkins…”is a lovely campus full of vision experts who are pioneering for us all.”

 

Presentations

A Parent’s Perspective:  Burju Sari

Burju Sari, a mother of a child with CVI, gave the opening talk.  She is also a TVI in early intervention. She was honest about her journey through denial, anger, acceptance. Her message was one of hope, love, and faith.

“He’s the glitter of our life,”  she said of her son.

Research:  Dr. Lotfi Merabet

Dr. Lotfi Merabet is an optometrist, neuroscientist and the Director of the Laboratory for Visual Neuroplasticity at the Massachusetts Eye and Ear Infirmary/ Schepens Eye Research Institute in affiliation with Harvard Medical School.

Dr. Merabet and his team discussed their fascinating research involving brain imaging and virtual reality to better characterize CVI for future research. The research is approached from a number of avenues: functional (task-based), behavioral (assessments), structural (white matter tractography and morphometry – how brain is wired), and connectivity (resting state).

Dr. Merabet said, “There are three things you can count on: death, taxes and neuroplasticity.”

He emphasized the difference in the brain wiring of a kid with CVI versus a kid with typical vision or ocular blindness.

The CVI brain is underconnected.

The CVI visual system is more sensitive and less robust.

There is a fundamental difference in the CVI brain and how we should intervene compared to a brain of someone with an ocular condition.

CVI Range (Roman): Ellen Mazel

From the CVI Teacher, Ellen Mazel –
“We have at this point one assessment for CVI that gives us an idea about functional vision.  The CVI Range gives us what we need as professionals and as parents.”

Best Practices:  Dr. Christine Roman-Lantzy

Dr. Roman-Lantzy presented on best practices.  She explained that  “best practices are a reflection of the times” and provided a brief history of education for the blind.

  • In the 19th century, blindness education included braille instruction
  • In the early 20th century, all visually impaired students were approached from a “sight saving” perspective
  • “Beyond these doors vision will not be used”
  • Children with low vision were blindfolded to “save” vision
  • 1963 – Natalie Barraga’s study on visual efficiency proves that vision is not a fixed capacity to be developed.  Educators now use braille only when the student has not useable vision.  The field of low vision skyrockets with the belief that all children with some degree of vision must be visual users. In essence, the pendulum had swung the other way.  The field had decided it was unethical to teach braille.
  • Result of shifting away from braille was that students with vision impairments fell behind in literacy and other school tasks
  • 1980s – Koenig & Holbrook offered a method to determine primary and secondary learning media (Learning Media Assessment)
  • Learning Media Assessments are now considered to be best practice for students who are identified as visually impaired.

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BUT

There may be a problem for students with CVI.

Most kids is Phase I are identified as potential braille readers because they aren’t using their vision.  This assumption runs counter to what we’re trying to do to get them to improve their vision.  If this is assumed, then vision is not being emphasized during the years of greatest neuroplasticity.
The upcoming Learning Media Assessment for CVI is a book in the works from Dr. Roman and Matt Tietjen, CVI Endorsed TVI)

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According to Dr. Roman-Lantzy, the current best practices for children with CVI are the following:

Identification: systematic screening for CVI in close proximity to birth or time of event in order to receive a timely diagnosis within year of occurrence

  • CVI Infant Screening
  • Physicians / pediatricians are beginning to recognize CVI

Assessment: CVI Range with CVI Range Endorsed person

Education

  • CVI-rich IEP
  • CVI Schedule
  • Direct & consult services
  • What’s the Complexity Framework
  • Orientation and Mobility

Dr. Roman also discussed her research at Pediatric VIEW, Phase III and what can go wrong with assessment and intervention for kids with CVI.

Thank you Jessica for these highlights from the 2018 CVI Symposium!

If you want to see last year’s presentations, check out the Perkins E-learning site.

http:/www.perkinselearning.org

Looking forward to the 2019 CVI Symposium:

What new insights into education and advocacy will happen at this year’s CVI symposium?

CVI Mom Rachel Bennett will present on the Family Education and Advocacy Panel!

What will you learn from the “experts”?

What will the “experts” learn from you?

Will you find “your people”?  

 

And,

 

the burning question on everyone’s mind…

 

 

 

Who wants pie?  

 

Okay, that last one may just be me.

Two more days.  Sigh.

See you in July maybe?

 

 

 

 

 

 

 

 

 

 

 

 

 

 

“Who put salt in the water?” Incidental Learning!

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Yesterday was Helen Keller’s birthday.  In honor of her extraordinary heart and intellect.  In honor of the brilliant teacher who opened up the world for her.  

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In Helen Keller A Life, author Dorothy Herrmann describes the moment when Helen experiences the ocean for the first time.  Anne Sullivan Macy, Helen’s teacher, explained later that she had anticipated Helen would be overjoyed by the full sensory experience of the pull of the tide and the wetness of the water.

What she did not expect was that Helen would emerge from the waves grimacing and coughing.

When she found her teacher’s hand, she demanded to know who put salt in the water? 

Clearly Helen had not expected that either.

Reading this passage made me laugh out loud.  It also reminded me that even when I try to teach E about the world, I will always have a lot to learn.  I have typical vision.  I experience the world visually, first and foremost.  I will leave out key details.

I keep learning and trying because I am her mom.  It’s challenging.  I forget to describe salient features.  I don’t always notice when she becomes still to listen to a fire truck that is passing because I’m rushing to get to the store.  I sometimes forget to give her a verbal cue before I give her a new object. We have lost so much time in her education.  There are still so many delays.  There is so much to teach.  I feel as though I am just now learning how to reach her. It can be very discouraging.

I find myself wondering how can I expect anyone else to try so hard when she is not even their kid?  Curling up in a fetal position in the closet seems like the only choice.  Then, I remind myself (clearly it’s quite busy in my head) that this is America.  There are laws and systems in place because parents like me – like you –  said “Enough already,” and demanded education for their children with special needs.

We are walking a path that has been paved by the parents before us. It’s a bumpy path with potholes the size of Texas, but, it’s a path nonetheless.  As parents of children with CVI, we have to create our own lane.

What we do for our children, and together for all of our children, will begin a movement to create a system of services for children with CVI when we say “Enough already.”

A key part of “Enough already,” is understanding and explaining the effects of sensory loss because CVI makes it challenging for children to receive visual and auditory information.  Even if your child is making great progress moving from Stage I to II to III in short order, your ability to advocate for access and why it is important remains the same. 

Here is some information you can use when you are discussing how your child with CVI learns.

The website for the National Center on Deaf-Blindness (https://nationaldb.org) contains a wealth of information about the effects of sensory loss and the importance of knowing how to teach children who lack incidental learning.  (Snuck that one in there on you.  If you are reading this post for the first time, please go back and read the earlier posts about incidental learning. It’s my favorite two word phrase! There’s a quiz later. Not really.)

The following is from the page, Developing Concepts with Children Who Are Deaf-Blind, written by Barbara Miles, M. Ed, and Barbara McLetchie, PhD. (https://nationaldb.org/library/page/1939)

Concepts are the ideas that give meaning to our world.

Here are some ideas that make sense from the perspective of the deaf-blind people who had them, but that might seem “odd” to someone with sight and hearing:

  • a boy thought “going home” meant the feel of a bumpy road and a series of turns in the car
  • a boy experiencing snow for the first time thought it was ice cream and asked for chocolate
  • a girl touched a wet leaf and signed “cry” (it felt like tears)
  • a girl thought food came from a mysterious place up high (it was always set down on the table from above)
  • a young man didn’t know, even after many years, that his family’s pet cat ate (he had never seen it or touched it as it ate, and no one had ever told him)

What each of these examples teaches us is how important it is to always be sensitive to and curious about a child’s perceptions of the world.

We need to continually ask, “What idea might she have or be developing about this experience, object, person, or place?”

If we want to help a child develop meaningful concepts, we must be willing to enter into a relationship and seek to understand the child’s concepts.

Children who lack sight and hearing or who have significant impairments in these senses, need to be consciously given continual access to the world and the society around them.

Most importantly, we must take the responsibility of providing experiences that will maximize the child’s opportunities to develop useful and meaningful concepts of the world. 

(“We” meaning the parents, yes, but also, the teachers, therapists, aides, and administrators who plan learning experiences for our children.)

It can be done.  Would there be a National Center on Deaf-Blindness if there had not been an extraordinary girl who became deaf-blind and an extraordinary teacher who made it her life’s mission to teach her?

I look to history to show us how to get where we need to go.

If even Anne Sullivan Macy forgot about the salt once in awhile, I can continue describing the world to my girl, making her experience books, and teaching her how to communicate through signs and technology

and

reaching out to you on the path we are making together.

 

 

A School District Tackles CVI – Fairfax County Public Schools

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Hello fellow families of lovable children who happen to have cortical visual impairment,

In a previous post, I mentioned that, across the United States, more parents are educating themselves about their child’s diagnosis of CVI.  They are taking their research into their IFSP and IEP meetings. They are asking their school districts how a child with CVI will be accommodated in the classroom.

Parents receive a wide spectrum of responses to their questions.

(And, I hammered this home with a tortured analogy from West Side Story.   Sometimes I have to make sense of things through musical theater.  Everyone has their thing.  Don’t judge. 

west side story pairImage:  Tony and Maria from West Side Story singing Somewhere (technically she’s lip-synching) 

There’s a place for us….children with CVI to be educated in the manner in which they can learn because they can learn…..SOMEWHERE a place for ….children with CVI.  Aren’t you glad I didn’t dredge that up again?)

As a direct result of the advocacy of parents in their individual IEP meetings, some school districts in America are recognizing CVI as a common diagnosis (#1 pediatric visual impairment –  Can’t miss an opportunity to throw that in.)  and as an obstacle to a child’s access (our favorite word) to a Free and Appropriate Public Education.  In fighting for their own children, these parents are improving education for all of our children.  It does not happen overnight, but there has been significant progress since I began looking for like-minded parents a decade ago.

It’s important for families to know that there are school and district administrators who are open to listening and to learning.

(There is a troubling issue with special education administrators.  Did you know that special education administrators do not have to have a background in special education to hold their positions?  Special education is a term which covers a wide variety of diagnoses and educational approaches. One would think that an administrator in this field would need more expertise to represent the students in their district, definitely not less. When I learned this, I wondered if this isn’t one of the reasons so many families feel like they are hitting a brick wall when they ask for teachers and staff to be trained in educating children with CVI.  Something to consider.)

Kudos to the administrators who acknowledge the challenge of educating children with CVI and who take action to train their staff.  This is new territory. They are leading by example.

Speaking of examples, Fairfax County Public Schools, the largest public school system in Virginia, has made a significant commitment to training teachers about cortical visual impairment through the Perkins-Roman CVI Range Endorsement.  

Dr. Irene Meier is the Director of the Office of Special Education Instruction for FCPS.  Two years ago, when parents met with Dr. Meier to give her information about cortical visual impairment and its impact on student learning, she was curious to learn more.  She recognized the need for specialized training to work more effectively with children with CVI.  She and Dr. David Lojkovic, Educational Specialist for Adapted Curriculum, worked with Perkins to provide FCPS teachers training through the Endorsement program.

When recently asked about the training, Dr. Meier responded:

“Our collaboration with Perkins and the feedback from the teachers was a very positive experience. We plan to continue to offer access to these courses next school year.
Over the course of the past two years, FCPS has been fortunate to participate in training, provided by the Perkins School for the Blind, that has advanced the skills of our staff who are working with students with cortical visual impairment (CVI). 21 FCPS teachers have taken either graduate level or advanced level courses, with several in that cohort pursuing the specialized endorsement in cortical visual impairment.

The feedback from teachers has been extremely positive.
Participant quotes: “I like taking Perkins’ classes because they’re structured, but flexible.”
“The assignments are challenging, but not too challenging.”
“The work we do in the classes can be directly applied to practice.”
Survey results show that teachers appreciate the opportunity to learn more about assessment with the CVI range and have used skills learned from the coursework with students that they serve. Furthermore, teachers indicated via survey that they were engaged in the coursework and felt encouraged to try strategies learned.
85% of participants in the coursework indicated that they learned new information as a result of taking the course.”

french-pith-helmet-big-head-version

Image:  A pith helmet

For her willingness to address the challenges of educating children with cortical visual impairment, CVI Momifesto would like to offer Dr. Irene Meier our first honorary Pith Helmet of Gratitude for helping parents of children with CVI forge a new path, blaze a new trail, if you will, in special education.

So, fellow parents –

if your child has been identified with cortical visual impairment and you are getting a lot of pushback from your school district when you ask for accommodations, modifications, and educators trained in CVI,

if hours of IEP meetings have worn you down so that you start to doubt yourself,

if you start to wonder if your request for your child to have access to her education is even possible,

remember that there are school districts, there are administrators, there are teachers who get it.  They are working with parents.  They are learning how to work with our children.

A question you may ask your school district might be, if Fairfax County can do it, why can’t we?

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P.S. If you know of a school or a district that has risen to the challenge of working with children with CVI, let us know at Info@cvimomifesto.com so we can spread the word!

 

 

 

Moms and Dads on Monday / Early Connections Conference 2018

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

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

post-its.png

Here are the words of the parents.

Hope

I hope every parent can be brave to fight their children

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

Support each other

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

Stay strong.

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

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

Be motivated by love, not fear.

Community

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

Inspiration

Be an involved dad!

Feed the good wolf

Be positive.  Life is good.

Medical imaging will not define what my child can do.

Don’t stop dreaming.

You’re a great Mom!  Congratulations Perkins

A future together

I’m not alone anymore

Inspired and thankful

Every parent has a story.

SO MUCH INFORMATION!  (I learned a lot.)

Expect miracles

Belief statement about your child

Knowledge

Advocate

Unconditional love

Balance is important.  Remember to stay connected.

Treasure the special moments

Rainbows always come after the rain

Every family has their own story about their amazing kids!

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

Perspective

Faith in action!

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

It will get better.

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

Doctors needs sensitivity training.  Listen to your gut.

It’s OK.

Just keep swimming but know where you are swimming to!

Keep going!

Family connection is essential.

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

Families are powerful, knowledgeable, and resilient.

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

I will choose how the story ends.

Teamwork

Faith

Never feel alone again.

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

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

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

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

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

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

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

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

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

“Just tell your story,” she said.

Huh.

This got me thinking.  And over-thinking.

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

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

to GI nurses asking me for her health history,

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

These are the people I see most frequently.

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

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

Here’s the first half.

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

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

And, it is a becoming.

Becoming a parent changes you.

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

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

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

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

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

It was just really hard.

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

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

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

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

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

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

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

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

This is fair.  (Uncool, but fair.) 

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

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

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

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

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

What would I want someone to say to me?

E and mom

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It is overwhelming.

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

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

It had to be said.)

HEY YOU.  This girl.

E with bib

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

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

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

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

This girl.

E in bouncy seat

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

She finds joy in the places you forgot to look.

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

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

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

HOWEVER,

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

SKY

Image:  Bright blue sky with white clouds

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

Remember that?

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

Baby girls

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

She is not broken.

You are, a little bit.

She loves you in spite of your broken parts.

She and her sister will help you put them back together again in ways you never imagined.

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

Thank you for indulging me.

 

 

 

We’ve Got This! / Early Connections Conference 2018

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

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

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Image:  A poster for the Early Connections Conference

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

or

http://www.scruffcheek.com