Somehow, Some day, SOMEWHERE!

IEP season is coming to a close in my neck of the woods.  It has been intense.  We hired an advocate for the first time in Eliza’s educational journey.  I am glad we did.  For the first time, I didn’t have to say much during the two meetings (4+ hours) we’ve had so far. It was a revelation.  And, I didn’t know what to do with myself.

Nothing has been finalized for us, but, the awareness that we have someone else on our team who speaks the school district’s language and understands how to articulate our goals for our girl is a gift.

We are going into overtime, people!  Summer sessions!  I still don’t really understand what that means, but I think our advocate does.

Aside from our personal experience, I have been curious about how other parents of childen with CVI fare during an IEP season.  I did some reading.

I found this timely quote from the book, Vision and the Brain:

“As professional understanding of CVI increases,

it will be incumbent upon medical and educational systems internationally to explore ways to best provide services to the full spectrum of affected children.

This collaboration may lead to

additional, mandatory training for specialists,

reconsideration of guidelines and regulations for entitlements to services related to visual impairment,

and

reconfiguration of educational environments to accommodate, as part of universal design, the learning needs of this population.”

Dutton and Lueck, Vision and the Brain – Understanding Cerebral Visual Impairment in Children, (Introduction xix)

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I wondered –

If professional understanding of CVI is increasing –

and we CVI savvy parents, therapists, educators, and ophthalmologists are doing everything we can to get professional understanding of CVI to increase-,

Then what is happening in terms of

additional mandatory training for specialists,”

reconsideration of guidelines and regulations for entitlements to services related to visual impairment,”

and

reconfiguration of educational environments to accommodate… the learning needs of this population“?

 

I asked a lot of questions to moms on FB pages. I called a few of them. Several of the moms were kind enough to write me back or take my calls. And, these are busy ladies. I emailed a couple of organizations to ask about how they are addressing the increase in referrals of children with CVI.

This is just one random mom’s curiosity about how other people and places address the challenges our family faces.

There was a wide variety of experiences.

Worse case scenario:  I was able to sit in on a due process hearing (about which I can say very little).  Due process hearings are where you end up if you come to an impasse with your school district.

Best case scenario:  There are some districts and areas of the country that are acknowledging CVI and, better yet, acknowledging the need to learn how to teach children with CVI.

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Worse case scenario:  This IEP season, I sat in on a due process hearing for a family who has fought for years  to have their daughter included in a classroom with proper accommodations for her diagnoses of CVI and hearing loss.

Four hours later, I had developed a tic under my right eye and drawn a binder full of unflattering renderings of the school district’s opposing council – a school district which has put this family through 7 levels of Hades over several years.  The hearing went on for three more days.

I was frustrated for my friend and her daughter.  I have spent time with this bright eyed girl and seen how she has learned to communicate.  As a matter of fact, it was meeting her that renewed my hope that Eliza could learn to communicate.  Because – in spite of odds that would curl your hair (my Appalachian grandma’s saying) her mother would NOT give up hope.  She educated herself about cortical visual impairment.  She sought out experts.  She created a learning environment and trained providers to serve her daughter at home while she fought the school system for appropriate placement.

In the conference room, I sat and listened to words.

 

Complicated children.  Medically fragile children.  Children with sensory processing disorder/sensory needs/sensory loss.

Words that sound frightening and complex.   Words that sound impossible to overcome.

Then, I started counting ceiling tiles because the words were too close to my own experience …. 1,2, 3…).

What about the common word in these phrases – children?

Children.

They are children first and foremost.

The word – the child – can get lost in the diagnoses, in the assessments and evaluations,  in the IEPs and the litigation.

(…68,69,70….It was easier to count tiles than to follow the legalese.)

This is a child.

This is a child who can learn.

This is a child who is motivated to learn.

The sparkle in her eyes, the way she claps her hands to say “yes” in response to a questions, the way she laughs when she chooses her favorite toy, the fact that after years of physical therapy, she is becoming strong enough to stand on her own, these are details which should be celebrated.  These are strengths we can build on.

Personal details get lost in testimony.  “Sparkle” doesn’t translate very well to the courtroom.  Nor do the hours of trial and error to teach a communication system, or to systematically teach a child to use her vision.

How can you get stern faces to understand the joy you felt when she answered a question for the first time?  When she learned to say “yes?”  What that means for her cognitive ability and her potential to learn?

And, if I felt that way in one afternoon, I cannot even imagine what her mother felt in 4 days of testimony.

She was so polished and poised.  She explained in measured tones about her daughter’s challenging medical history.  About her family’s tireless efforts to teach their daughter when school placements beginning with preschool failed over and over again.

(1001, 1002, 1003….)

This mother is looking for a place where her daughter can learn, where she can belong.

It’s just that simple.

Maybe not easy, I’ll grant you that.  I live it.  I get it.

But simple.  And, do-able.

And, the attorneys argue about dates and emails and who did this or didn’t do that.

I cannot talk about what they discussed or what was decided.

It is all so painful and absurd that I had to go to my happy musical theater place.

Boy, if there was ever a place that needed a musical number, it was that conference room.

Listening to the debates and the arguments, I began hearing the song “Somewhere” from the movie West Side Story.   The song is performed by the star-crossed lovers, Tony and Maria.  Maria’s part was sung  by someone who was not Natalie Wood but lip-synched by Natalie Wood (because, in 1961, actresses of actual Hispanic origin were cast only as chorus dancers or Rita Moreno – who nailed it!  Bear with me here. There is a point.)

 

Cue the orchestra: Sing – um-, lip synch it, Natalie!

west side story pair

“Theeeeeere’s aaaaaaaaa   plaaaaaace for us.  There’s a place for us. Somewhere a place for us.” 

That’s what we are looking for humorless suit people who wield too much power over a little girl’s education.  If you truly understood what this girl, what her family has been through -if you truly understood ACCESS–argh.  I can’t say anything… but no one said anything about SINGING….

SOMEWHERE

A PLACE FOR US
PEACE and QUIET (and no bickering attorneys and stern faced judges) and OPEN AIR
WAIT FOR US 

SOMEWHERE

Somewhere a place our children can be taught in the manner they can learn by educators who believe they can learn.

A place for us.

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This IEP season, I spoke to other mothers who took the time to comment on the challenges or successes they were facing in their attempts to get their children ACCESS to a Free and Appropriate Public Education.  Several of them wrote posts for CVI Momifesto.  They are teaching the rest of us as they fight for their children.

The following conversations are happening in conference rooms in schools all over the country as

more and more children are identified with cortical visual impairment

and as more and more parents ask school districts how they will accommodate their children:

 

“We aren’t mandated by law to learn about CVI.” – Educator in Florida
“But, you are required by law to teach my son” – CVI Mom in Florida

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“You want us to fix your child.” – Educator in Indiana

“She doesn’t need to be fixed. I want you to believe you can teach her. I want you to teach the way she can learn. ” – CVI Mom in Indiana

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“We are past tears here.” – CVI Mom in New York discussing the extensive list of accommodations she insists are in every draft of her son’s IEP

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What I see in the examples from a due process hearing and from conversations from IEP meetings is that

school by school, meeting by meeting, family by family, mom by mom –

momentum is building.

(Oh my gosh, it’s MOM-entum!   I just blew my own mind.)

Parents are educating themselves about CVI and demanding to know how the education system will accommodate their children.  

west side story

Image:  A dance scene from West Side Story.  Women and men in colorful dresses and suits with one arm raised.

I will post more on the places where school districts and organizations supporting the blind and visually impaired are taking the necessary steps to improve how they identify and how they accommodate children with CVI.

THIS IS REALLY HAPPENING IN SOME PLACES IN THE U.S.!  SOME PLACES IN THE U.S.  CVI PARENTS DON’T HAVE INDENTATIONS ON THEIR FOREHEADS FROM BANGING THEIR HEADS INTO A BRICK WALL OF IGNORANCE AND LOW EXPECTATIONS.

“SOME HOW, SOMEDAY, SOMEWHERE!”

Let’s dance!

For now though, I have to be at a 6th and 8th grade graduation in – oh dear – 4 hours.

 

Adventures in Advocacy / Oxford Eagle

Adventures in Advocacy: A fantastic article about the Stearns family and their recent trip to D.C. to advocate for paid maternity leave and early intervention. Oscar and Jack’s parents made sure their legislators heard about their sons who overcame so much to be where they are today.

Bravo, Susan and Dan! Well done, Oscar and Jack!

Oscar and Jack

We were the cover story for today’s Oxford Eagle Gazette! Read here!

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Adventures in Congress

Oscar and Jack

So far today our little lobbyists have met with Senator Wicker and Representative Kelly. We were supposed to meet with Kelly’s staff but he called us in and met with us himself. I seriously doubt we are effecting change but we did get our message across about lifetime caps in healthcare funding and investing in early intervention services. Winning moment so far: Senator Wicker came into his constituent meet and greet and said “Good Morning!” To which Jack replied “Nice to meet you!” Senator Wicker said “that’s young Jacob Stearns from Oxford.” So we made an impression!

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CVI Teleconference Call

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

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

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

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

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

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

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

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

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

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


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

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

Thank you Lighthouse Guild for sponsoring this call!

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

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

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

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

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

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

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

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

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

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

Talking points:  

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

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

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

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

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

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

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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. 

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.

C962E4DD-2CB4-4F42-BCC0-735AA0EB49FA

 

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.

AAPOS 2018 / Champions and Challenges

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

CHAMPIONS

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

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

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

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

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

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

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

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

METHODS

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

Frequency of seeing children with CVI

Adequacy of education about CVI during training

Comfort with making diagnosis

Adequacy of communication from the pediatric ophthalmologist 

Comfort with making recommendations

Referral of patients for services

Interest in receiving further education about CVI

RESULTS 

The response rate for pediatric ophthalmologists was 8.0%.

The response rate for TVI was 14.8%.  

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

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

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

DISCUSSION 

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

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

CONCLUSION 

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

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


Challenges remain.

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

I see so many of these kids in my office.

I get so many of these kids.

I don’t know where to send them.  

I don’t know what to give them.

CVI is scary.  

I don’t know what to do with it.”

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

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


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

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

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

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

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

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

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

lehman pcvi

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

 

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

 

 

 

 

 

Adventure in Advocacy / AAPOS 2018

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

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

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

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

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

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

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


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

We have actual conference materials.

pcvi table.png

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

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

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

hard candy

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

 

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

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

Will keep you posted.

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

It happened!  History was made!

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

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

CVI = Consensus, Vision, and Initiative 

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

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

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

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

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

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

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


 

The panelists included:

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

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

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

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

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

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

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

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

Alisha Waugh, COMS – CVI Parent and Physical Therapist


 

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

Listening is an important first step.

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

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

It is time for things to change.

If, as Mark Richert and AFB have stated –

“Successful advocacy requires at least 3 key elements:

consensus about the problems and solutions,

a shared vision among stakeholders regarding the desired outcome,

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

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

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

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

Stay tuned!