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

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

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

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

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

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

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

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

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

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

Talking points:  

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

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

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

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

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

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

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https://openstates.org

This site can help you locate your state representatives.

https://www.govtrack.us

Govtrack will help you locate your federal representatives.

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

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

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

An example email:

Dear Sen. Washington, 

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

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

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

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

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

Thank you for your service, 

Thomas Jefferson

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

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

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

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

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

fight win!

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

Moms on Monday #19 / Brenda from WA

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

Today I heard a quote that resonated with me.

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

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

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

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

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

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

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

brenda's t-shrit

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

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

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

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Why I started Start Seeing CVI

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

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

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

Jasper's t

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

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

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

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

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

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

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

There is also so much misinformation out there around CVI.

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

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

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

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

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

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

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

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

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

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

jan

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

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

And this is just the beginning.

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

Jasper

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

 

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

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

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

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

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

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

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

IMG_0834Image:  A girl smiling broadly swings at the park.

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

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

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

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

What is child-guided assessment?

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

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

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

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

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

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

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

Thank you!

 

 

 

 

 

Adventures in Advocacy / DC + MD AER Conference

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

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

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

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

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

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

 

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

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

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Image:  Lou Tutt and Rebecca Davis

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

Moms on Monday # 18 / Lacey from MA

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

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

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

savannah

Image:  A smiling young girl in glasses

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

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

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

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

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

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

sav baby

Image:  An infant wearing glasses

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

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

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

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

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

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

sav with blocks

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

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

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

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

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

 

 

 

 

Moms on Monday #17 / Maggie from PA

Good morning!

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

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

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

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

will in pool

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

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

willImage:  Will, a smiling red haired boy

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

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

will in van

Image:  Smiling Will in a wheelchair in a van

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

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

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

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

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

will with rl

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

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

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

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

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

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

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

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

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

I would say two things to other moms.

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

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

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

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

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

What are your hopes and dreams for Will?

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

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

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

AAPOS 2018 / Champions and Challenges

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

CHAMPIONS

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

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

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

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

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

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

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

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

METHODS

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

Frequency of seeing children with CVI

Adequacy of education about CVI during training

Comfort with making diagnosis

Adequacy of communication from the pediatric ophthalmologist 

Comfort with making recommendations

Referral of patients for services

Interest in receiving further education about CVI

RESULTS 

The response rate for pediatric ophthalmologists was 8.0%.

The response rate for TVI was 14.8%.  

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

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

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

DISCUSSION 

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

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

CONCLUSION 

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

————————————————————-

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


Challenges remain.

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

I see so many of these kids in my office.

I get so many of these kids.

I don’t know where to send them.  

I don’t know what to give them.

CVI is scary.  

I don’t know what to do with it.”

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

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


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

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

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

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

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

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

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

lehman pcvi

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

 

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

 

 

 

 

 

Adventure in Advocacy / AAPOS 2018

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

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

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

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

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

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

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


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

We have actual conference materials.

pcvi table.png

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

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

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

hard candy

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

 

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

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

Will keep you posted.

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

It happened!  History was made!

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

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

CVI = Consensus, Vision, and Initiative 

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

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

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

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

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

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

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


 

The panelists included:

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

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

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

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

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

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

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

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

Alisha Waugh, COMS – CVI Parent and Physical Therapist


 

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

Listening is an important first step.

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

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

It is time for things to change.

If, as Mark Richert and AFB have stated –

“Successful advocacy requires at least 3 key elements:

consensus about the problems and solutions,

a shared vision among stakeholders regarding the desired outcome,

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

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

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

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

Stay tuned!

 

Moms on Monday #16 / Dixie from KY

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Every child with CVI is different.  IMG_20171224_150802713

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

 

 

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