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.

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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.

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!

 

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

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

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

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

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

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

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

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

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

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

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

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

Why We Need the Cogswell-Macy Act

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

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

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

The Cogswell-Macy Act would – 

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

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

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

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

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

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

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

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

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

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

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

 

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

 

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

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

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

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

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

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

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

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Image:  The Supreme Court building

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

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Image:  Outside of the Russell building

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

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

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

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

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

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

You do not.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

That’s really all you can ask.

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

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

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

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

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

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Pretty much sums it up.

 

Adventures in Advocacy / VA AER 2018

Hello Fellow Families of Children with CVI,

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

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

We submitted a similar presentation for Virginia AER.

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

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

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

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

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

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

So here’s  how I figure it –

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

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

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

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

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

AND

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

Information such as the following:

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

Oh, yeah and –

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

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

CVI Experts Weigh In

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

sandy koala

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

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

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

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

Be a lifelong learner about the brain. 

Be a lifelong learner about CVI.

Ocular vision loss does not improve.

CVI CAN IMPROVE.

CVI masks cognitive ability.

If we expect improvement, we will get improvement.  

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


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

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

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

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

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

I think we are on to something here, folks.

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Image:  A pumpkin pie with a slice missing.

Whatever it takes.

 

More Adventures in Advocacy to come!