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

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

Spring. Break. 

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

Two.

More.

Days.

Spring Break.  I give.  Uncle! You win.  

But I digress.

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

The 5th Annual Perkins CVI Symposium

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

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

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

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


 

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

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

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

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

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

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

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

 

Kaleidoscope: The Cortical Visual Impairment Podcast

Here is a link to this wonderful collection of stories:

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

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

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

But I digress.

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

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Jessica’s Highlights from the 2018 CVI Symposium

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

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

 

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

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

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

 

Presentations

A Parent’s Perspective:  Burju Sari

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

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

Research:  Dr. Lotfi Merabet

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

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

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

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

The CVI brain is underconnected.

The CVI visual system is more sensitive and less robust.

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

CVI Range (Roman): Ellen Mazel

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

Best Practices:  Dr. Christine Roman-Lantzy

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

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

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BUT

There may be a problem for students with CVI.

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

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

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

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

Assessment: CVI Range with CVI Range Endorsed person

Education

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

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


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

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

http:/www.perkinselearning.org

Looking forward to the 2019 CVI Symposium:

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

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

What will you learn from the “experts”?

What will the “experts” learn from you?

Will you find “your people”?  

 

And,

 

the burning question on everyone’s mind…

 

 

 

Who wants pie?  

 

Okay, that last one may just be me.

Two more days.  Sigh.

See you in July maybe?

 

 

 

 

 

 

 

 

 

 

 

 

 

 

American Conference of the Pediatric Cortical Visual Impairment Society 2018

They came!  They saw!  They chatted over mojitos and exchanged contact information. 

The Pediatric CVI Society hosted their 6th annual conference at the Children’s Hospital and Medical Center in Omaha, Nebraska.

This, fellow CVI parents, is the conference where you can hear the most recent research on the science surrounding Cortical Visual Impairment and the art of the education of children with this brain based vision loss.  The PCVI Conference is the place where you can meet fellow families, share your stories, ask your questions, and broaden your support network.

The goal of the American Conference on Pediatric Cortical Visual Impairment
(PVCI) is to bring together occupational therapists, ophthalmologists,
optometrists, teachers of the visually impaired, neurologists, pediatric
intensivists, physiatrists and parents to increase interdisciplinary
understanding of cortical visual impairment in children.

 

Introducing the PCVI Society!  

PcVI logo

 

From http://www.pediatriccvisociety.org

pcvi business

Image:  Three people standing at a podium at Children’s Hospital and Medical Center.  Sara Olsen, COO of the PCVI Society,  Lindsey Hiller, the new PCVI Society president and Dr. Skip Legge, outgoing PCVIS president.  These folks have championed our children for years. The conference has grown under their watch and under the watch of the PCVI Society Board.  Trailblazers they are!  Pith helmets for all!

We care about kids with CVI.

The mission of the Pediatric Cortical Visual Impairment Society (“the Society”) is to advocate for improvement in the quality of life of children with vision loss due to brain disorder, disease or injury. The mission is restricted to matters concerning the sense of vision.

Goals

The mission of the Society will be fulfilled through the pursuit of the following goals:

1. Advance interdisciplinary education and research.

2. Enhance dissemination of information and its communication among and between professionals, parents, government and educational institutions, and other groups whom impact children with cortical visual impairment.

3. Advocate for the appropriate allocation of resources to allow for improved vision services for children with cortical visual impairment.

4. Improve public and professional awareness of cortical visual impairment in children.

5. Advocate for governmental policy that improves quality and quantity of vision services available to children with cortical visual impairment.

6. Engage in fundraising activities that will allow for advancement of the Mission and the Goals of the Society.

On this note, I am happy to tell you that there is a lot of momentum around raising awareness about Cortical Visual Impairment and improving medical and educational outcomes for our children.  Top priorities for the next year are to create a new website with resources for doctors, providers, educators and families and to fund research.  

To continue building the PCVI Society and to strengthen the Society’s ability to be a champion for children with Cortical Visual Impairment and their families, we need members. 

The PCVI Society needs members to help us blaze a trail for our children.

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BECAUSE

Children with CVI need to be identified as early as possible.

They need providers who understand the unique needs of children with CVI.

Families of children with CVI need support and education to help their children see the world.

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So, I will make you the offer I made the folks at this year’s conference.

For the people who become members of the PCVI Society and who encourage two other people to become members of the Society, I – one random mom – will offer you your very own PITH HELMET OF GRATITUDE.

Just email me at Info@cvimomifesto.com with your name and the 2 (or more) other members you have recruited and I will have a pith helmet with your name on it at the 2019 PCVI Conference!

The pith helmet is for trail blazers!  Get it?  I forgot to say that at the conference.  Also, it’s easier to bring pith helmets to a conference than homemade pie.  Speaking of pie… 

IMG_0711

pith helmet
Images: Above:  Gunjan Rastogi-Wilson, CVI mom, advocate, and fundraiser with pie.
Below:  Random mother in blue jacket at the PCVI conference sporting a “pith helmet” from Oriental Trading Compnay.  Nothing but the best for our trail blazers!  This could be you!

 

.

http://www.pediatriccvisociety.org/membership/

 

alice

The future for our children and our families is currently under construction. The Pediatric Cortical Visual Impairment Society is leading the way

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

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

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

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

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

Clearly Helen had not expected that either.

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

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

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

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

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

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

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

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

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

Concepts are the ideas that give meaning to our world.

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

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

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

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

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

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

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

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

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

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

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

and

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

 

 

“Vision Time” is not a thing. Incidental learning is. Part One

The Pediatric Cortical Visual Impairment Society will convene for its annual conference at the end of this week at the Children’s Hospital and Medical Center in Omaha, Nebraska.  As we prepare for an educational and lively meeting, we are revisiting some earlier posts.  (http://www.pediatriccvisociety.org/conference/)

Every family with a child with a visual impairment (CVI or ocular) needs to understand incidental learning to be an effective advocate for their child.

This post was published on September 14, 2017.

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Okay, my fellow parents of gorgeous children who happen to have CVI.

Here’s the deal.

We have to speak a common language for advocacy.  We have to know some fundamental things about the effect vision loss has on learning to affect change in our early intervention programs and our school systems.  We have to talk the talk.

In most cases, we have to teach the talk.

Will it be easy?  No, but what else do you have to do?

AHAHAHAHAHAHAHAHAHAHAHAHA!

(Sorry, I’ll wait while we all catch our breaths from hysterical laughter or choke on a spit-take.  I’ll wait while you get a towel.  Bonus:  Now the floor is clean!)

Knowing how to parent a child with severe vision loss did not come naturally to me.  I have typical vision.  My daughter was the first blind person I had ever met.  At 6 months, when we got the diagnosis of CVI, we were told she was legally blind.  We did not know anything about CVI.

What I remember about the first couple of years:

  • She never looked at me or anything I tried to show her.
  • Her head hung down all the time.  (I thought this was because of the diagnosis of Cerebral Palsy which we also got on around the time she got her diagnosis of CVI.  At Christmas time.  Ho. Ho. Ho.)
  • She never slept for more than 3 consecutive hours.  (So when people at the grocery store commented on how serene she looked  while asleep in the baby carrier on my chest, it was all I could do NOT to scream – “She is not asleep!  She never sleeps!  Her head just hangs down!  All the time! Why won’t she sleep?  I’m dying inside! Argh!”   To be fair, I was severely sleep deprived.  This is against the Geneva Convention, by the way.  People have been charged for war crimes for less.     Just sayin’.)
  • I was never more than an arm’s length away, yet I felt as though I was a million miles away from her. (Nothing made me feel more useless than sitting on a blanket next to my infant daughter, trying to get her attention, while she stared blankly at the light coming through the window behind me.  I asked her therapists over and over again, “Is she in there?” Typing this reminds of how low and sad I felt in those days.  Did I mention that the child NEVER let me sleep?)

There was so much I did not understand.  There was so much to learn.  Over the years, I sought out some fantastic teachers of the visually impaired (Annie Hughes, TVI and Director of VIPS-Indiana is my personal hero.) and Dr. Roman-Lantzy in an attempt to educate myself about vision loss and CVI.

What I learned from them made perfect sense, but had not occurred to me before.  I was struggling.  I wasn’t sleeping.  My older daughter was a toddler.  Nothing made sense at that time.  Basic hygiene was a luxury.  Forget living day-to-day, we were living minute-to-minute.  The transition into the “new normal” of being a family with a child with multiple disabilities was (and is) chaotic and messy.

Maybe sharing some of the fundamentals will help another mother of another child with CVI get a handle on the situation a little earlier, a little easier.

Maybe developing a common language will help us all go into our IFSP meetings and our IEP meetings with an action plan and the information to back it up.

Here’s where we need to start.

INCIDENTAL LEARNING

Incidental learning is the learning that just happens for a typically sighted person.  From the time you open your eyes in the morning to the time you close your eyes at night, you are constantly taking in information about your environment without even trying.

Incidental learning is the information you receive with your eyes without realizing it.

Children with Cortical Visual Impairment are not incidental learners.

Here’s how it was explained to me.

Blue bowlMiss Annie’s Blue Bowl Story
Blindness or significant vision loss has a number of impacts upon a young child’s development.

One of these is the child’s lack of access to incidental learning.
Vision is the “great integrator” of sensory input. No one plans incidental learning, but it goes on every minute that a sighted child is awake. To illustrate this, I often tell parents the “Blue Bowl Story.”
Two babies are in high chairs at one end of the kitchen. One has normal vision, and one is blind. The dad comes into the kitchen and says to his wife, “Hey Honey, where is the blue bowl? I have rented a movie and want to make some popcorn.” The mom replies, “It’s on top of the refrigerator.” So, the dad walks to the refrigerator, he stretches his arm up and reaches on top, he grabs the bowl which is blue, and he walks to the microwave to make the popcorn.
In those few seconds, the child with vision has just had four “incidental” lessons;

1) The word/label “refrigerator” was connected with the object

2) The child is starting to get an idea about the concept of “on top”

3) The child is beginning to understand that even though this bowl is much bigger than his cereal bowl, it is still called a bowl.   It must be the “scooped out/can hold things” aspect that makes it a bowl.

4) The child has a blue ball, and this is a blue bowl, so identifying that color as blue has just been reinforced

What did the child without vision get?
He/she heard the same words, but they weren’t connected to any meaning. Sometimes this is called “empty language.” This story illustrates how important it is for children who are blind or have low vision to have real experiences with real objects, so the language they hear isn’t “empty language,” but is tied to meaning.

Thanks to Annie Hughes, TVI and Director of Visually Impaired Preschool Services-Indiana

Being able to say, with confidence, “My child in not an incidental learner,” can be the start of an effective conversation with your educational team.

Stay tuned for more information and resources about incidental learning.

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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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!”

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.)