CVI Momifesto

Lego Trees and Last Straws / Incidental Learning, Part Two

June 27, 2018June 27, 2018 CVI Momifesto6 Comments

This post was one of the original posts after CVI Momifesto began in September 2017.

We are running it again as a lead up to the American Conference on Pediatric Cortical Visual Impairment beginning on Friday, June 29, 2018 at the Children’s Hospital and Medical Center in Omaha.

Learn all you can about incidental learning. You may have to teach the folks who work with your children. Encourage them to learn more. Your child with CVI does not have visual access to the world. But, this visual access can improve.

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The following story is the final straw, the very last straw, the one that broke me and the camel’s back.

This is the story that led to my current life of ~~crime~~, um, advocacy.

lego tree again

When my daughter, E, turned 3, she aged out of early intervention. This was after a thoroughly disheartening couple of years in search of an early interventionist who knew anything about CVI.

I realized it was going to be up to me to find the educational services she needed.

It was quite a learning curve and a huge responsibility. I was already sweating organizing doctor appointments and therapies (sometimes even successfully!), hunting down specialists, researching seizures and reflux, and occasionally, if absent-mindedly, patting my older daughter on the head.

I did not feel successful in anything I was trying to do. Launching my complicated daughter’s educational career was not something I felt equipped to do.

I was told that our state’s School for the Blind was too far: I would need to enroll her in our local special needs preschool. This was a developmental preschool classroom. The children had a variety of diagnoses. She was the only one with a diagnosis of vision loss. I was informed that the classroom teacher would have consult time with a Teacher of the Visually Impaired.

“Okay,” I thought, “I’ll just take them information about CVI. I can hand this over to the TVI.” Right? Right.

The classroom was as colorful and welcoming as any preschool classroom should be. This also means it was way too busy for a child in Phase I or Phase II of CVI. At the time, E was in early Phase II. I asked for a meeting with the teacher and TVI to get a jump on the accommodations and modifications we would need to develop together.

At the meeting, I gave the teacher resources I had printed out online. I began explaining the diagnosis and how we would need to simplify some places in the room if we were going to expect her to develop the use of her vision.

Then the TVI told me about the “one kid like that” she had 20 years ago.

A now familiar feeling of dread was born.

With little to no suggestions coming from our TVI, I suggested putting cloth on some of the toy shelves to create less complexity and clutter. I asked them to find a space for her with a tri-fold and an uncluttered table so that she could spend time learning new objects or pictures, without the visual and sound distraction from the classroom and other students.

My requests for modifications simply meant that, like any mother, I wanted her to have visual access to learning materials. I wanted her to have as much access as she could. This is more complicated for children with CVI. But, it is possible. Do-able even.

For E to be successful in this classroom, the staff would need to make the effort to understand her vision loss and to help her understand what she was seeing throughout the school environment. They needed to know that she could learn to see better and that they had a responsibility to support her in that.

I encouraged the teacher to make the requested modifications, and for the staff to read about CVI. I watched the TVI drop off a box from the American Printing House for the Blind.

Despite my feeling of dread, I thought, “I’ve got to give this time to play out.”

For a few weeks, when I dropped her off, I would linger awhile before leaving. Pretty soon I was getting the “let me do my job” stink-eye from the teacher and had to shuffle back to my car.

One day, near the end of class time, I dropped in a few minutes early to see how she was doing. Was she interacting with other kids? Were they explaining things to her? Giving her time to process? Encouraging her to touch things?

It was free play time. All of the kids, E included, were sitting on a brightly colored carpet. Behind them were low, wide bookshelves filled with toys and puzzles. Kids were reaching for toys, pulling them down, and putting them back. They rolled cars on the carpet, built block towers, or talked about which action figure was cooler.

Eliza sat with her back to a toy shelf. Smiling. She’s a happy kid. She was sitting next to an aide and listening to the kids playing. Seeing her smile made me happy too. She loves to be near other children. It was great to see her included with them. It was great that they were giving her a chance to get comfortable there with them.

The aide spied me in the doorway. I could tell she wanted to show me that they were keeping Eliza involved. So, she reached up on one of the shelves, grabbed a large plastic bin of legos and brought it down – crash – into Eliza’s lap.

Then, she reached into the bin and pulled out a small square stack of legos. She grabbed Eliza’s hand and put the legos in it.

“Here Eliza. This is a tree! Feel it? This is a tree.”

Eliza was startled both by the noise and weight of the bin dropped on her lap. To her it was just a loud noise and a physical intrusion. She was startled again by the suddenness of her hand being grabbed. The words made no sense to her.

She pulled her hand away, leaned over and curled up on the floor, overwhelmed by all of this confusing sensory input. The aide just looked back at me and shrugged.

That sound you just heard was the last straw breaking.

This moment gave me a chilling glimpse of the next 12 or so years in classrooms without teachers and staff who understand CVI.

If there was ever a kid who needed to learn about trees by touching them, E is the kid. If there was ever a kid who needed to go outside and feel the bark and the leaves and have it all explained to her (frequently) to make a lasting cognitive connection, E is the kid.

I suspect she is not the only one.

I wondered how many learning moments would pass right by her because a teacher or an aide didn’t understand that the way they were presenting the material was all wrong – and, quite likely, was pushing her further away, further into herself ?

Their ignorance would create behaviors that made her seem agitated or vacant.

(And, let’s consider this for a moment.

How much could you take if you were surrounded by flashes of light, color, and sounds that had no reference point?

What if people were always talking to you in words you found hard to understand or too quick to grasp?

What if, every day, you were told to move, yet before you could get your body organized enough to move, someone else’s hands grabbed your hands or your shoulders to steer you?

What if you didn’t have the ability to speak your joys, your frustration, your pain, or your fears?

What behavioral problems would you have on your report? How much would you learn?

My behavior report would be the size of your average copy of War and Peace, highlighted with lots of red exclamation marks, frowny faces, and the occasional cuss word.)

In this moment, I saw a situation that would begin in the ignorance, and, the apathy, of a teacher, an aide, and a TVI. Their inability to reach her would be documented as E’s lack of cognitive ability and her behavior problems.

It would start there, in preschool, but their ignorance and apathy would follow her every year as a downward spiral of low expectations about my girl’s abilities.

To learn, she needs to have experiences with the real objects. THE REAL OBJECTS. THE REAL PLACES. THE REAL ANIMALS. THE REAL SENSATIONS. (Within reason, I get that. We’re not going to run into the polar bear exhibit at the zoo to get the authentic Antarctic experience, or anything.)

THE REAL THING.

This is NOT a tree.

AND, this is NOT rocket science. lego tree again

It is a problem, my fellow parents. A real problem for our kids. This is NOT how our children learn.

And, they can learn.

What can we do about it? I started telling this story to whomever would listen. Tell your stories. Ask for more real experiences in your child’s classroom. Ask your child’s teacher how she can bring real objects and real experiences into her classroom. (Because your child is not an incidental learner, right?) Ask them if they understand incidental learning. If they don’t, teach them. I know a great Blue Bowl story you can tell.

There are some advocacy action items in the works. CVI Momifesto will fill you in when we have more information.

Thank you for your comments and suggestions. We are a work in progress and will continue learning as we go.

It is good to know there are other parents out there on a similar path. And, as we travel this path together, may there be many beautful trees to touch, flowers to smell, apples to taste, and well behaved animals to pet, even the occasional even tempered polar bear. (Because how cool would that be?)

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

June 25, 2018June 26, 2018 CVI Momifesto5 Comments

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.

Miss 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.

A School District Tackles CVI – Fairfax County Public Schools

June 20, 2018June 25, 2018 CVI Momifesto2 Comments

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

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

Parents receive a wide spectrum of responses to their questions.

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

Image: Tony and Maria from West Side Story singing Somewhere (technically she’s lip-synching)

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

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

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

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

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

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

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

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

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

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

french-pith-helmet-big-head-version

Image: A pith helmet

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

So, fellow parents –

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

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

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

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

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

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

Somehow, Some day, SOMEWHERE!

June 15, 2018June 19, 2018 CVI MomifestoLeave a comment

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.

Moms on Monday #22 / Hope from CT

June 11, 2018June 19, 2018 CVI Momifesto1 Comment

Good morning fellow families of sparkling children who happen to have a diagnosis of cortical visual impairment!
Today, Hannah’s mom, Hope tells us about her feisty 4-year-old daughter and how she came to be diagnosed with cerebral/cortical visual impairment (CVI).

Hope and her husband, Rob, welcomed their first children, boy-girl twins at 24 weeks, 5 days gestation. When the twins were 18 months old, Hope was inspired to begin taking online classes at UMASS-Boston towards an M.Ed. in Vision Studies. She explains that by becoming a teacher of the visually impaired (TVI) she hoped to learn everything she could to help Hannah’s twin brother, Joseph. Joe was diagnosed with low vision due to retinopathy of prematurity (ROP).

As a student in Ellen Cadigan Mazel’s class on cortical/cerebral vision impairment (CVI), Hope began to suspect some of Hannah’s unusual visual behaviors may have resulted from her complex medical history following birth. Hannah had significant complications following birth as a micro-preemie weighing less than 1 lb 8 ounces including intraventricular hemorrhage (IVH) leading to post-hemorrhagic hydrocephaly (PHH) which required the placement of a shunt (when Hannah was 3 months old) to divert excess cerebral spinal fluid from her brain to her abdomen via a ventricular-peritoneal (VP) shunt.

Ellen Cadigan Mazel, Hope’s CVI class instructor encouraged her to have Hannah formally assessed.

Hope is writing today to encourage parents who suspect their son or daughter may have CVI to seek an expert opinion.

Hope also wants to encourage anyone reading this post to consider a career in vision studies. (Editor’s note: Yes! Yes!)

There is a growing need for TVIs, and COMS (Certified Orientation and Mobility Specialists) and there are openings in nearly every state.

Parents in or near New England can learn more about the UMASS-Boston program by visiting the website https://www.nercve.org/. Also, federal grants are available at some learning institutions to offset the cost of the degree. Parents could contact their bureau or agency for the blind for advice on finding a vision studies program near them.

Hope is extremely grateful to her son and daughter’s educational consultant from DORS-BESB, Gail Feld, who left a brochure about becoming a TVI for Hannah and Joe’s babysitter. As a result of finding the brochure, Hope found out about the program at UMASS-Boston. Hope also wishes to express her appreciation for Joe and Hannah’s educational teams for their optimism, enthusiasm, and innovative steps they have taken to give her children the access to learning which has brought them this far.

Hope's twins

Image: Joe (a little boy in a blue t-shirt and jeans) and Hannah (a little girl in a yellow hat, pink t-shirt and jeans) take a break by sitting on the rear stairs of one of the vehicles at a Touch-A-Truck event.

What can you tell us about Hannah?

Hannah is a strong, loveable and capable little girl. Complications of premature birth left Hannah with hemiplegia of her left arm and left leg. She has not allowed this to slow her down one bit! She wrestles toys away from her twin brother, Joseph with ease and then gallops away. When Hannah sets her sights on something there is no stopping her. She has a drive to learn and a passion for letters and numbers. Her greatest strength is her memory. Her favorite person is her father, her favorite place is the beach or pool, and her favorite things are books and television.
We came to suspect Hannah might have CVI at around age 3. At a team meeting, her Pre-K teacher related a story about Hannah’s affinity for a yellow spoon (color) which she would reportedly always look for and gaze at for long minutes during free-choice play. At home, color seemed to be an important element for Hannah in objects she was attracted to. She would always try to get her hands on the can of Pam ® cooking spray. Whenever this distinctive yellow and red can was near the edge of the counter, Hannah would try to reach it. Once I learned about the ten characteristics of CVI from Ellen Cadigan Mazel, my professor at UMASS-Boston, I began to suspect there was more to this “quirky” behavior.

I asked Hannah’s TVI, Peggy Palmer, if she thought it might be worth assessing Hannah for CVI. As it turned out—it was! Hannah’s results on Dr. Roman-Lantzy’s CVI Range put her in Phase III. The best outcome as far as Rob and I are concerned is that strategies for supporting children with CVI in the classroom, once implemented, made learning available to Hannah even before she was formally diagnosed, at age 4, with CVI by her ophthalmologist, Dr. Tara Cronin.
The diagnosis of CVI gave our family and the educational team a rich context for understanding how color could be an anchor for Hannah and why complexity inhibited her learning. For me, I finally began to understand my daughter’s unexplained behaviors. For example, when we brought Hannah to the toy store or library to pick out something “new”, she would consistently gravitate toward books and toys she already had (novelty). Her preschool teacher came to understand Hannah could attend to the activities of circle time ONLY if she were provided with hands-on materials to ground her in the activities of the meeting. Hannah’s physical therapist came to see Hannah learns best when verbal directions are given first, BEFORE actions are modeled with NO talking (complexity).

Now that Hannah is approaching kindergarten age, the biggest hurdles she needs to overcome are social. Hannah struggles to name classmates accurately UNLESS she is provided with auditory or other clues as to their identities (prosopagnosia).

What lessons has motherhood taught you?

Hannah and her twin brother, Joseph have taught me I need to be a strong and confident leader—even on those days when I do not feel strong or confident. While it is important to listen to what medical and educational professionals have to say, at the end of the day you need to trust your instincts. You alone are the true expert when it comes to your child and no one has a greater interest than you in his or her wellbeing.

Image: Hannah (a little girl in ponytails holding a green stuffed animal), Hope, and Joe (a little boy in a blue baseball cap and glasses) on his mother’s lap. They are relaxing on a butterfly shaped bench at Magic Wings in Dearfield, Massachusetts.

Another thing Joe and Hannah have taught me is that all children can—and do—learn. Behavior is the result of learning. If a child has behavior—whether it is functional or not—it is the result of learning. As our children’s first teachers, and later as their educational advocates, we need to make sure there is a match between our child’s availability to learn (attention) and the appropriateness of his or her environment for learning (access).

What advice would you give the parents of a child newly diagnosed with CVI?

Be the “help” you think your family needs. I am proud of the parent I have become as a result of all the challenges my family and I have overcome together. I have grown into a question-asking, action-taking, resistance-battling parent. While I do my best to give everyone the benefit of the doubt, I seek my own answers and have—by becoming a TVI—gone to great lengths to become more capable of understanding my children’s visual diagnoses.

No degree is required to stay abreast of best practices in the education of students with visual impairment. Family Connect provides a host of free resources for parents of children with visual impairment and blindness. Organizations like NAPVI and NFB’s POBC offer opportunities for families to network. Rob and I are most appreciative of our families, friends and co-workers who supported the four of us through the past few challenging-but-transformational years.

It has truly taken a village to raise our two resilient and amazing children.

Hope sesame place

Image: Joe, Hope, Hannah, and Rob visiting Cookie Monster at Sesame Place

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Another piece of advice I have is this: Believe in resilience.

One neonatologist, Dr. Gruen, assured us that despite their extensive brain bleeds (intraventricular hemorrhages) and ROP (retinopathy of prematurity) our children would go on to have remarkably good outcomes. He knew this, he said, because Hannah and Joe had caring, educated parents who were involved in their day-to-day care. He assured us that between early intervention services and lots of love, our twins would have “everything they needed”. And he was right!
It seemed, in those early days, that what the twins needed was something only “expert” others could provide. Day and night, nurses and doctors intubated, extubated, and re-intubated the babies who seemed to be in a constant struggle to survive. It was two weeks before their skin was deemed “intact enough” that we could safely reach a hand into their incubators and touch our own children. For ten precious minutes at a time, I held my hand flat on the back of one or another sleeping baby. Under that hand was a little person who found themselves in a world an entire trimester too soon. But they were here, and we would do our best to keep them here.

Before their eyes were even open, and before we were ever able to hold Joe or Hannah, Rob and I read to them through an open “port-hole” in each incubator. The host of readers grew to include grandparents and friends. As a result of all this TLC, Joe and Hannah have developed a deep love of books. On more than one occasion, each child has insisted on carrying a book into bed with them as one might a favorite stuffed toy or a blanket.

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If I could go back in time and give advice to my former self, it would be this:

1) Ask plenty of questions.

2) Accept resistance as a lack of understanding (of CVI).

3) Place trust in those who have earned it.

To this I would add: trust yourself above all others because—and believe me on this—no one cares more about helping your child achieve his or her best educational and medical outcomes than you and your family do.

—————————

On Asking Questions

From the time they began to open their eyes in the NNICU, I was filled with questions about Joe and Hannah’s unusual visual behaviors which I did not ask. I was busy asking lots of other questions. I wanted to understand the implications of their high and low (blood) lab values, I would ask how long the treatment for NEC (necrotizing enterocolitis) would last and how long it might be before Joe and Hannah would be well enough for us to do skin-to-skin care.
Soon, I started to observe some unusual visual behaviors almost from the time their eyes were no longer covered with light-therapy sleep-shades. One twin was staring up at the lights while the other seemed photo-phobic. I had questions. I did not ask all of them. Why not?
First, I had the feeling I should accept my children’s unusual visual behaviors. I suspected that any vision differences were a consequence of their premature birth and were to-be-expected. When our children were born 16 weeks early, we were told each baby had a 50/50 chance of survival. They were fighting for their very lives, not striving towards the next developmental milestone. Three months had gone by and Joe and Hannah’s “age-typical” peers were still in-utero; there were no “age typical” peers to compare them to.
Second, I held back from asking all the questions I had because of a sense that I (or we) had already asked enough questions. I had the irrational belief that if I exceeded some perceived “quota” of parent questions it would in some way slow down the progress of the care-team. The meetings ran close to an hour as it was, and, after all, weren’t we lucky to even be permitted a seat at the table?

What does Hannah like to do? What are her favorite activities? What do you like to do as a family?

Hannah loves to laugh. She has the most infectious laugh and almost anything silly will make her giggle. She especially likes when grown-ups make mistakes, such as mixing her up with her brother, Joe and calling them by the “wrong” names. As a family we enjoy swimming and going to the beach to build sandcastles.

Hope and Hannah at Science Center

Image: Hope and Hannah pose with Splash (a large colorful fish sculpture) on a recent trip to the Connecticut Science Center.

What do you hope to do as a TVI you were not able to do as a parent?

I look forward to working with children with CVI and other visual issues because I know I can direct them toward resources I know from first-hand experience to have been helpful. Not everyone is ready to “join” a parent organization but I want my clients to know they are not alone. Other people are going through the same or similar experiences. It is my hope to support those individuals who are ready by helping families find each other, network, and come to consensus about what needs to change at a systems level.

What do you worry about? What changes do you feel are needed?

Right now, I think there is a need for more information about CVI to be made available to education professionals starting with TVIs. The UMASS Boston program made a course on CVI a requirement for all TVI candidates. Other programs need to follow suit. Personally, I would be happy to speak to pre-service teachers—special educators especially—to provide some training on the characteristics of CVI. As a parent of a child with CVI and a newly minted TVI I feel I could provide an overview of this public health crisis and its causes. My goal would be to introduce them to some modifications and accommodations which can be of help to all students but especially to kids with CVI. I plan to start by reaching out to colleges and universities close to where I live in Connecticut.

As a TVI and a parent I worry about children with CVI who need appropriate services but for whatever reason are not receiving them. Also, I worry about the state-by-state criteria for low vision services. I believe every child whose CVI impacts their access to the general curriculum should be eligible for low vision services regardless of the results of their visual acuity test. Some parents are hesitant to bring their children with CVI for a low-vision exam. They are fearful a near-normal visual acuity result could cause their needful children to be identified as NVI (Not Visually Impaired) when, in fact, they are impaired.

Big and little changes are needed.

The time is NOW and the power is US.

Thank you, Hope! I absolutely agree. I have learned so much from your story and your dedicated efforts to become an expert for your children.

There is a national shortage of teachers of the visually impaired and certified orientation and mobility specialists. This is part of the reason it can be so difficult to find educators trained in working with children with CVI. With parent advocates/TVI like Hope, the time IS now.

Moms on Monday #21 / Jennifer from PA

June 4, 2018August 8, 2018 CVI MomifestoLeave a comment

Good morning fellow families of radiant children who happen to have a diagnosis of cortical visual impairment.

Today, Rheanon’s mom, Jennifer tells us about her curious, joyful, 10-year-old daughter. She also shares her frustration in her attempts to get Rheanon access to her educational environment.

Image: Rheanon, a smiling girl standing behind her brother draped over a reverse stander.

Image: A smiling family (Mom/Jennifer, Dad/Greg, brother/Chase and Rheanon) in their Sunday best standing outside in front of a fountain on a green lawn.

What does Rheanon like to do? What makes her laugh? What are her favorite activities? What do you like to do as a family?

Rheanon is a happy go lucky little girl! She loves to take care of her babies (all 15 of them) and she absolutely loves when she gets to hold a real baby! She likes to snuggle with and talk to both me and her father. She likes to watch Daniel Tiger on PBS as well as play with her Daniel Tiger characters. Her favorite episode is “The Baby is Here”. She can recite the words and sing the songs.

She has the most infectious laugh and most anything silly will make her laugh. She especially likes when we say the wrong thing, such as mixing up Aunt and Uncle. We tease her about loving hot dogs and opening her own hot-dog restaurant because she does not like them at all, she is also not a fan of white socks or my favorite local pizza shop.

We like to spend time together as a family, playing games such as Zingo and Sequence, reading stories, & visiting family. In the summer, Rheanon loves to go for walks. Her favorite thing is to go to the local amusement park, Knoebels. She likes the spinning, fast moving, belly tickling rides.

Image: Rheanon and her brother, Chase. She is wearing a Start Seeing CVI t-shirt.

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

We learned that Rheanon had CVI when she was 1 year old, but we didn’t get a diagnosis until she was 2 years old.

We knew that she wasn’t ‘seeing’ when we brought her home from the hospital but the doctors in the NICU said it was because of her prematurity. In time, we were told, she would be fine.

After a few weeks at home, I learned of the Infantsee program. I took her to our optometrist who said the said the same thing, “Delayed Visual Maturation”.

When she was 6 months, she was diagnosed with Infantile Spasms. All of our energy went to stopping the seizures. With an aggressive neurologist, special diets, and heavy duty medications, she had her last seizure 5 months later.

At this point, we were working with Early Intervention and had an in-home PT and Teacher. Early Intervention referred us to Blind and Visual Services. BVS then got us an appointment with an Optometrist in State College. It was there that Rheanon was diagnosed with CVI.

But, we needed a diagnosis from an ophthalmologist.

The first ophthalmologist gave no credit to the optometrist or the diagnosis. He said we should, “take her to the mall to look around.”

We went to Will’s Eye in Philadelphia for tests to rule out everything else.

My child, who we adopted, who we weaned off of drugs, who just got done having steroids and hormone injections to stop her seizures, had to be sedated so they could hold her eyes open and rule out all other diagnoses when an optometrist diagnosed her correctly (and immediately) months before.

They ultimately gave her the CVI diagnosis.

We got a TVI after that, though very few CVI strategies were ever put into place. I didn’t understand it and her team didn’t understand it and there was not a push or a requirement for them to do so.

I took her to the Overbrook School for the Blind for an outreach program. Overbrook staff told us how smart she was and how much she would be able to learn.

I took her to Altoona where a team of teachers and therapists from the Western Pennsylvania School for the Blind met us to evaluate her. Most of her Early Intervention team came along – PT, OT, TVI, O&M, Teacher and EI director. We learned some strategies, but once we returned home, no one knew how to continue.

We had 2 assessments by Dr. Roman at WPSB and then 2 more assessments by a TVI after Dr. Roman moved on from that program. I would bring the assessments back home to the team but nothing ever came of them.

Rheanon is a smart girl.

Dr. Roman said at one meeting, “She is making you think she can see more than she can.”

———————-

Rheanon is now 10. She attends her neighborhood elementary school and is in the third grade.

Her recent assessment with Dr. Roman puts her at phase 2 on the CVI Range.

I think that the members of her team are excellent teachers and therapists.

However, I do not think that they are knowledgeable in CVI, therefore I do not think that she is being supported properly.

I feel like I keep bringing things to the table to help and they keep getting pushed aside.

I feel like they are squashing her potential.

I feel like they don’t think CVI is affecting her.

I feel like our team has fallen apart.

I feel completely alone in the fight for her.

I am fighting for her right to learn. Her right to learn in the way she needs to learn.

And I don’t understand why this is so difficult.

I refuse to let her down, so we push forward. We may lose old friends but we gain new ones.

—————-

Rheanon doesn’t always interpret things correctly, most often its people that she misinterprets. White haired ladies are grandma, tall men with deep voices are our neighbor Howard…

She knows her sight words well, but she struggles to read sentences.

Image: Rheanon’s brother, Chase, leans over an IPad and traces sight words for his sister.

Her memory though – Holy Cow – I may never have to buy another planner.

I joke that she can work for the CIA someday because her questioning is persistent and she will find the hole in your plan.

Rheanon smile

Image: Rheanon, a smiling girl with short hair in a red sweatshirt.

I won’t look back again with regret that we didn’t do everything we could.

And, Jennifer is changing the way Pennsylvania serves its children with cortical visual impairment. She knows a thing or two about advocacy; She works for the Arc of Pennsylvania. (If you have never heard of the ARC, look it up. There should be a local office near you. They are there to educate, support and fight for you and your child with special needs.)

Jennifer has also paired up with another mom to offer presentations about how to work with children with Cortical Visual Impairment to local early interventionists. Can’t wait to hear how those presentations are received!

Thank you, Jennifer, for sharing your family and your clever and tenacious girl with us!

Emma Bear’s Day: Phase 1-CVI Book

May 26, 2018 CVI MomifestoLeave a comment

Lauren Seeger, CVI Mom, blogger at Emma Bear’s Journey, and moderator at Parents of Children with Developmental Delays shares a book she has created for children with CVI: Emma Bear’s Day: Phase 1 CVI Book.

Emma Bear's Journey

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Emma has CVI and we have had quite a difficult time finding any books that were suitable for her, given her visual impairment. We resorted to painting the background of books black, as to aid in making it easier for her to view. After going back and forth about it, we finally decided to create our very own CVI series. I’m so happy to announce that “Emma Bear’s Day: Phase 1” is available for pre-order next week. We will be shipping printed copies in early June! The book is $19.95 (plus shipping) and you will receive a FREE digital copy of the book with each purchase. This will enable your child to view the book on a Kindle or iPad. Please contact me at emmabearorg@gmail.com to pre-order your copy today!

“Cortical Visual Impairment (CVI) has been described as the leading cause of pediatric…

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Moms on Monday # 20 / Barbara from FL

May 21, 2018May 22, 2018 CVI Momifesto1 Comment

Good morning fellow families of resilient and adorable children who have cortical visual impairment!

This morning we have the pleasure of hearing from Logan’s mom, Barbara.

logan and parents

Photo: Barbara, a woman with short dark hair, She holds the right arm of Logan, a little boy in a shirt and tie who is held by his father, Leo, a tall man with dark hair. They are all smiling.

When we first spoke, my intention was to ask Barbara the questions that other moms have been kind enough to answer for earlier Moms on Monday posts. As any parent of a school-age child with CVI knows, it’s still IEP (Individualized Education Plan) season. That means CVI moms and dads across America are buying Tums in bulk and putting lawyers on speed dial in their never-ending search for a Free and Appropriate Public Education (FAPE) for their children. (It’s the law, by the way.)

We didn’t get around to the questions during the first conversation because Barbara’s focus (like so many other parents of school-age children with CVI) is making sure his school team understands that cortical visual impairment requires accommodations throughout the day, extra training for staff, and modifications for school materials.

“Every obstacle that has been put in front of him, he has overcome.”

logan and glasses

Photo: A little boy in a green t-shirt and sports glasses. Smiling broadly, he is missing one of his front teeth.

Logan is 5 years old. His mom and dad recently attended the transition IEP meeting to prepare for his kindergarten placement. The school team proposes placing him in a self-contained classroom for visually impaired children. Barbara would like Logan to be placed with his peers in an inclusive setting with appropriate support. She would like to tell them to “stop putting my round peg in your square hole.”

According to Barbara, this year the focus is to make the school system understand how much they don’t know about CVI. They can try to contest the CVI Range, but they are required to give him ACCESS to his environment.

“We need him to be independent. We don’t need them to feel sorry for him and think ‘Poor thing.’ We don’t want them to assume that he will never get a diploma. At the end of the day, he’s going to have to function in the real world.”

A teacher at the proposed placement told Barbara, “I’m not trained in CVI. I’ve never had a kid with cortical visual impairment.”

At the IEP meeting, Barbara was told, “Our teachers aren’t required by law to become CVI endorsed.”

She replied, “But, you are required by law to teach my son.”

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And, this, fellow parents, is where we find ourselves in IEP meetings across America. Our children exhibit some or all of the 10 characteristics of cortical visual impairment. They require assessment so teachers will understand how our children use their vision and to plan accommodations to help them improve their functional vision.

The assessment is the CVI Range (Dr. Christine Roman). The CVI Range was validated by the research of Dr. Sandra Newcomb (Journal of Visual Impairment and Blindness, 2010).

Our children’s vision can improve. This is an issue of accessibility not disability.

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Logan is currently non-verbal. Over the past 6 months he has learned how to communicate with an AAC (Augmentative Alternative Communication) device. During the meeting, Barbara requested that Logan’s teacher receive training in how to use AAC devices and how to communicate with children who are non-verbal, but this training was not added to the IEP.

In response, the school system requested that Logan be assessed through an educational evaluation by a psychologist. Barbara, his mom, is also a developmental psychologist. She explained to the school team that psychoeducational assessments are not appropriate for children with visual impairments. (See post: Death by IEP / Why Formal Assessments Do Not Work for Children with CVI or other Sensory Loss)

Barbara would like a teacher who understands cortical visual impairment and how Logan communicates with his AAC device.

What I want educators to know about Logan.

“Logan enjoys a challenge. He never gives up. I want educators to know that teaching Logan is about giving him ACCESS to his education.
I recently saw a video of a mother whose daughter has cerebral palsy. The mother explained how hard it was for her daughter to get her body to do what she wants it to do. She said that people often misinterpret difficulty – the physical difficulty of getting your body to move the way you want it to – for an intellectual disability.
Logan has overcome every challenge placed in front of him. One time, when he was a baby and still not sitting up yet, I heard him laughing in another room. I went in to see what he was doing. He was laughing because he had gotten himself into a sitting position all by himself. From then on, I knew that laugh meant he was up to something. He doesn’t give up.
School is supposed to offer him the least restrictive environment, not the most restrictive environment. At the end of the day, he is going to be in the real world. I want him to have experiences in the real world and, for me, this means being educated along side typically developing peers.”

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Introduction: Logan lives in Florida with his mom, Barbara, dad, Leo, and 3 siblings, Lauren, Liam, and Landon. Landon and Logan are twins.

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

Logan is a very social kid. He loves to interact with other people both adults and children. He loves it when people play games with him and sing to him, especially interactive songs like Wheels on the Bus. He loves to play Peek-a-Boo. He enjoys when I go outside and surprise him by looking in the window. He is a very active kid. He loves to dance and to jump around.

We do all the stuff other families do. He goes where we go. We go to the pool, play in the yard, go to museums and Disneyworld.

logan and siblings

Photo: Four children posing for a picture with big smiles. Three boys, Landon, Logan, and Liam in colorful checked shirts and dark pants. Their older sister, Lauren, in a red dress with a matching red bow in her long curly hair, stands in the middle behind Logan.

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

“Stumbling over diagnoses” has been a recurrent theme with Logan.

When he was 8 months old, he began sleeping a lot. When he woke up, his high-pitched cry was different than his usual cry. I remember taking videos of spasms that happened when he slept.

We had lots of doctor appointments back then since the twins were preterm. I asked about the spasms and the high-pitched crying. It wasn’t until we went to a new neurologist that we were taken seriously. The neurologist took one look at him and told me to go to the hospital immediately. He was hospitalized with Infantile Spasms.

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I tried to get him enrolled in a special needs daycare through the state because he needed every therapy there was and my insurance wouldn’t cover it. It was a struggle to get him into the program even though he fit their criteria.

The head therapist suggested that I apply for Medicaid waiver funding for Logan. I told her we couldn’t because my husband works. She told me Logan had one of those diagnoses where he would be eligible.
“What diagnosis is that?” I asked.
She printed out a list of eligible diagnoses. One of them was cerebral palsy.

“He has this?”

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I have gotten used to going against the grain.
When Logan was smaller, we decided that Logan should have a selective dorsal rhizotomy in the hopes that he would become more mobile. His physical therapists advised against it. After the procedure, he began standing and even learned to use a walker. He now walks without assistive devices.

The physical therapists are now recommending the procedure to other families.

Phote: Logan in a t-shirt that says “Little Explorer” walking with a reverse walker

A couple of years ago, I attended a conference on cerebral palsy and developmental medicine. It was then that I first heard about CVI. I thought, “Oh, this looks complicated. I don’t know if this applies to him but I have to learn.”

Logan had been followed by a pediatric ophthalmologist because he also has strabismus and we were patching. Yet, I had never heard about even the possibility of CVI from our ophthalmologist.

When Logan was 3 years old, I told our neurologist that I noticed things that didn’t “make sense.” I found it odd that TV didn’t interest him at all. His sister and brothers watched cartoons, but cartoons didn’t interest him. I wasn’t thinking about vision. I’m a developmental psychologist. I was thinking maybe the cartoons were abstract and his thinking was too concrete for them.

The neurologist couldn’t answer my questions. She said there were no studies on kids who don’t watch TV.

I took my newfound information about CVI to our pediatric ophthalmologist and asked him if it was possible that Logan had CVI. He said, “Yeah, he has that. I guess I’ll refer you to the Lighthouse for the Blind.”

I was floored. It was like receiving a cancer diagnosis. I didn’t know anything about CVI. And now, you’re telling me my child is blind and you’ve never told me this before?

I asked my pediatrician how long the diagnosis had been in his file. Apparently when Logan was 2 1/2 years old, the diagnosis was added to his file without informing me.

Anger wasn’t going to get me anywhere. I knew I had to learn. I found Dr. Roman’s videos on the West Virginia website (http://wvde.state.wv.us/osp/vi/cvi/cvi-special-topics.html).

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

We didn’t know he had CVI for 4 years. When I finally made contact with the Lighthouse for the Blind they sent someone to come work on a few things through the Blind Babies program. However, once he entered the Visually Impaired program within our local school district, the Blind Babies program closed out the case. In the school district, we were only give consultation services from the TVI.
Now that Logan is 5, the Lighthouse for the Blind is supposed to offer services for children with blindness and visual impairment. They offer blind children support with braille or technology 2 Saturdays/month. When I ask for services for CVI, I was only offered once a month.

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

First, I would say it’s not the end of the world. CVI is treatable. Their vision can improve.

You are not alone. I haven’t found any other moms here of children with kids with CVI. One of the things I have found is that Facebook can help you find a community and can help you find answers. For example, I found out that the Texas School for the Blind was holding a conference on Phase III with Dr. Christine Roman-Lantzy. There were grants for families to attend, but the families had to be from Texas. I asked our Lighthouse for the Blind and Division of Blind Services if there was grant money for this conference. They said no. I paid to go to the conference. I was grateful that TSBVI waived my registration fee.

At this conference, I got a lot of information. I got to meet Dr. Roman. I learned about the weekly CVI conference call sponsored by the Lighthouse Guild. I learned that there are TVI who are willing to learn about CVI and work with families to help them learn more about giving their child access to their environment.

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

CVI is a lot more common than you think. It is not a problem with his eyes. It is his brain. His brain has a hard time taking in visual information.

He is a very social kid. Still, I have to explain to people at school that when you see him smiling and waving at you, he sees you, but he doesn’t know who you are.

What are your hopes and dreams for Logan?

My hopes and dreams for him are the same ones I have for my other kids. To be successful in school, to have friends, to be the typical kid he is.

I have learned to quiet that part of me that says “He can’t do it. I have learned to quiet the skeptic in me. No one knows his potential. Including me.

I have to try.

It’s what moms do.

It is what moms do. Every day. Thank you Barbara for sharing your experiences. You have a beautiful family.

Adventures in Advocacy / Oxford Eagle

May 17, 2018May 17, 2018 CVI MomifestoLeave a comment

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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Hope has work for us to do

May 15, 2018May 30, 2018 CVI MomifestoLeave a comment

About 8 years ago, I attended a conference at a School for the Blind I will not name to learn about the options for transitioning visually impaired toddlers to preschool.

During a panel presentation of expert educators at the school, a grandmother sitting down the aisle from me raised her hand. She stood and asked about the diagnosis her grandbaby had just received, “It’s called cortical visual impairment. I’d like to know what we can do to help her.”
At that point, my daughter was going on 3 years old. I had been researching CVI and how to modify our home environment for Eliza for a couple of years. We had seen Dr. Roman-Lantzy a couple of times. I was waiting to hear the experts recommend her book or mention that vision can improve with accommodations – with education. I wanted to hear what this panel had to say – maybe they knew something I didn’t.
Then, one of the experts told the grandmother and the whole auditorium of parents from all over the state that there was nothing she could do. CVI might improve. It might not. At her granddaughter’s young age, she would just have to wait and see and hope her vision improved.

Wait and see and hope.

Wait

See

Hope

If that is the most passive piece of advice you’ve ever received, then raise your hand – or wait – Don’t raise your hand: Stare at your hand and wait for it to raise itself.

Yes, there are times when a situation is beyond your control and the only thing to do is to wait and see and hope. I am familiar with these times.

There are also times when you create hope through your actions.

It’s important to be able to tell which is which.

The experts went on to the next question. The grandma sat down and folded her hands in her lap. My jaw fell open. I wanted her to ask a follow up question. I wanted her to ask why they thought there was nothing that could be done for an infant with CVI.

I wanted to stand up and tell them they were dead wrong. Neuroplasticity makes an infant’s brain open to learning: It makes new pathways for functional vision possible. The time to begin working with her granddaughter was yesterday.

I wanted to reach across the aisle – across the other families separating us – so I could pat her hand and tell her that she had not been given the right information.

I didn’t.

I sat in my seat and stewed. I didn’t feel as though I knew enough to raise my hand in front of a crowd to contradict the very people who were hosting the conference. It was frustrating and surprising that a school could be giving wrong information to families.

I regret that silence.

I regret not sharing my story with that grandmother.

I regret not asking her for her story.

My silence did not serve anyone that day. Because I stayed silent, that woman remained alone. Sitting down the aisle from her, I remained isolated from her. We left and went our separate ways.

I hope she went home and continued researching. I hope she found the support she needed. I wish it didn’t have to be so difficult to sort out accurate information about cortical visual information and how to support children with it.
I have thought about silence a lot over the years.

How silence keeps people separated. How silence allows incorrect information to stand uncontested.

I have thought a lot about hope.

Being hopeful can be a very vulnerable place to live. For every one person who agrees with you, there are twenty who look at you funny and wait for your high expectations to come crashing down. For every one person who offers a hand, there are twenty who are quick to step back with a snide comment or a sigh.

Cynicism is easy. It requires no effort at all. It is dull and lifeless. Cynicism is fueled by fear – fear of exposure, fear of failure, fear of judgment.

Hope can be hard. Hope requires energy. Hope is fueled by love. Thankfully, love is the easy part. We have an abundance of it.

Sometimes, if you are lucky, you find words artfully put together that capture a feeling you carry around with you. Finding them makes you feel less alone. Sharing them makes your heart happy as though the words could stretch out to embrace someone the way they embraced you.

Recently I was lucky enough to stumble upon words that described my favorite kind of hope. The hope I know what to do with.

“Though hope may sometimes seem like a luxury – frivolous, groundless, insubstantial – it is precisely the opposite.

Hope is elemental. It is made of some of the strongest stuff in the universe.

It endures.

Hope does not depend on our mood, our disposition, our desire.

Hope does not wait until we are ready for it, until we have prepared ourselves for its arrival.

It doesn’t hold itself apart from us until we have worked through the worst of our sorrow, our anger, our fear.

This is precisely where hope seeks us out, standing with us in the midst of what most weighs us down.

Hope has work for us to do.

It asks us to resist going numb when the world within us or beyond us is falling apart.

In the height of despair, in the deepest darkness, hope calls us to open our hearts, our eyes, our hands, that we might engage the world when it breaks our hearts.

Hope goes with us, step by step, providing the sustenance we most need.”

–– Jan Richardson, The Cure for Sorrow

This is what is rattling around in my busy head these days, fellow families. Some days, some years are like that I suppose. Most days I do my very best to listen to what hope tells me to do. There is work to be done.

Every day, I know that cynicism is a luxury I cannot afford. I know that.

On the days, I can’t listen to the “to-do list” hope has for me, I am comforted by the fact that there are others who will listen for me until I can engage the world again with a broken and fierce heart.

This is me waving from my little corner of chaos to yours with affection and flowers of particularly popular colors I’m sure you can appreciate.