Lego Trees and Last Straws / Incidental Learning, Part Two.

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 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 part is more complicated for children with CVI.

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? 

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?)

 

 

“It is what it is.” I wonder.

“It is what it is.”  A dedicated TVI with many years of experience said this to me earlier this morning.

This is not the post I had planned for today.  I planned to follow up with more examples of incidental learning, the kind of effortless learning typically sighted people take for granted.  The kind of learning not available to children with vision loss.

It bears repeating:  Children with Cortical Visual Impairment are NOT incidental learners.  This phrase may become my first tattoo.

Take this critical piece of knowledge with you when you begin the ongoing conversation with schools about how to teach you children.  It has been a real challenge to get this point across in every school my daughter has attended.  I wish I had known how to explain incidental learning much sooner.

My secret goal is for everyone who knows me to get to the point that, when I begin to say (maybe a little self righteously),“Have you ever heard of incid…”

They will cut me off with an exasperated sigh.  “Incidental learning. Yes. Good grief. We know.  WE KNOW. Can we please, for once, finish a pizza without discussing how typically sighted people effortlessly process information?”

Then, with a satisfied smile and a mouth full of cheesy pepperoni, my work here will be done.

That was the plan for this post.

But, then this morning, I participated in a conference call between the educational team from my daughter’s school and the staff at our state’s DeafBlind Project.  (There are federally funded DeafBlind projects in every state.  The DeafBlind community has been very receptive to the CVI community.  They have the expertise in teaching children with sensory loss that is often missing in general Special Education programs.  If you are not satisfied with how your child is being taught, ask about the DeafBlind Project in your state.  You can find it here – https://nationaldb.org)  

The conference call was a way for the educators at the DeafBlind Project to offer training and coaching to my daughter’s classroom teacher and her aides (sometimes aides get overlooked, but they often spend more time with the child than the teacher). I will go into more detail about the National Center on Deaf-Blindness and State Projects in later posts.

After the call, our TVI wanted to catch up on my daughter’s progress this summer. She told me about the materials and accommodations she made at the end of last year and into ESY (Extended School Year) for my girl. She explained how she had lobbied for more time in the classroom and more training for everyone.  She was actually preparing to leave early for a family emergency, but, she made sure she came for this conference call.

She wanted me to know that she has been giving this school, this classroom, my daughter, everything she can.

“But, you know,” she smiled sadly at me, “it is what it is.”

I do know.

What it is  is  Teachers of the Visually Impaired working with caseloads so large, and in so many schools, that they struggle to meet the time allotments in each student’s IEP.  TVI who can only provide consultation, at best seeing students 15, 30, 45 minutes a week.  At worst 15, 30, 45 minutes a month. (For students whose vision loss affects their access to their environment every waking minute of their day.)  TVI who, in some states, are expected to provide Early Intervention as well as in-school consultation for students through high-school. (How effective would you be if you had to braille a high school senior’s Geometry homework, then, drive to the next county to show a new mother how to interact with her baby with low vision?  How would the average Kindergarten teacher feel about taking over for a Calculus teacher and visa versa?  Different, equally important, sets of skills.) 

This is what it is.  This is how it is. It is already not enough for children with ocular forms of vision loss.

AND, Cortical Visual Impairment is a new challenge for TVI. They did not get the training on CVI in their teacher training programs. Many of them are recognizing this challenge.  They are asking for more training.  When school districts are unwilling to provide it, they are seeking it out themselves.  They are paying to get themselves the skills to teach our children, to help the world make sense to our children.

I applaud the Teachers of the Visually Impaired who are taking the initiative to learn about CVI and to advocate for children with CVI in their classrooms, often to no avail.  (Don’t give up!  You aren’t alone! These kids matter! I will personally bake you a pie and hug the stuffing out of you if I ever get the chance.)

Today was, finally, a step in the right direction for making school a place where my daughter can learn.  I know it is just a beginning. I have learned to say that I am “cautiously optimistic” when things seem to be improving.

I cannot forget that it has taken me over two years, in this school alone, of arguing, pleading, explaining, attending conferences, and doing my own research to get to this point.

I have had the pleasure of meeting a very dedicated TVI who is going above and beyond for us and for all of her students.  I am so grateful for her time and her effort.  I will continue to learn from her and with her.

Yet, it is what it is.  It is still not enough time. She is still pulled in too many directions.

If it is what it is, I wonder what it can be if we put our minds to it.

I wonder how we, the parents, can help it become what it should be: consistent access to a learning environment, teachers who understand CVI and who can make appropriate modifications in a classroom, enough teachers and TVI to give every child with any vision loss, including CVI, ample direct instruction and consultation.

I wonder.  Do you?

 

 

 

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

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.
 

The Dance of the CVI Mom at an IEP (Could I put more initials in a title? A-OK!)

Over the past 11 years, and in no less than 5 different states, I have attended countless Individualized Family Support Plans (IFSPs) and Individualized Education Plans (IEPs).  (Quite the fun fact about me.  May make a great t-shirt.)

In every single one of these meetings, I have introduced the conversation about Cortical Visual Impairment and how it affects my daughter’s ability to learn.  I introduced it.  The mom. 

I need to be clear that I have not yet been successful in getting her an educational environment that fits her unique learning needs, and, especially, her CVI.  Believe me, I’ve tried.  I’m still trying and I will share our efforts in future posts.

We are going into 6th grade now.  The frustration and despair I feel, when I let myself think about how much time we have lost, is overwhelming.

Being overwhelmed is not going to change anything for her.  Being overwhelmed is not going to improve the current state of education for children with CVI.

So, I have to do something different.  I have to call it what it is: Schools are not prepared to teach children with CVI.   I have to do something.

If moms do anything, we persevere, right?  We ask a question on Facebook, or call yet another doctor, or get the latest book, or even, start a blog.  Whatever it takes.

Sometimes it takes curling up in a fetal position in your closet for 3 days.  Ahem.  So I’m told.

My point is that I have always had to put CVI on the educational team’s radar.  It doesn’t matter which state I’m living in. I have to bring it up.  And, then, inevitably, I have to sit back and watch as I am assured by the Teacher of the Visually Impaired and her administrator that they have “got this.”  “Not to worry.”

I know this is not the case because I am aware of the national shortage of Teachers of the Visually Impaired.  I am also aware of the national shortage of TVI, teachers, and therapists with any expertise in CVI.  I’ve been asking where the experts are for a decade now.   We don’t have enough of them.

In our IEP, I will ask, “Do you have the CVI Range Endorsement through Perkins School for the Blind?”

I am met with blank stares.  Crickets.  Tumbleweeds.

Someone may say, “I took a workshop with Dr. Roman a few years back.”  Or, “I saw Diane Sheline speak once.”

These are great beginnings to an understanding of  working with children with CVI.  Beginnings.

And then, in the IEP meeting, I begin the intricate dance of the mother of a kid with CVI.  It goes a little something like this:

(Deep breath, remember to smile! Bring bagels. It’s show time!)

I ask what services are available and introduce what she needs according to the CVI Range and her present levels of progress  (yes, the unfortunate acronym – PLOP),

(Maintain eye contact, keep smiling, shuffle, shuffle, hop step),

Explain – politely- but, through clenched teeth (The show must go on!)  because I can’t believe I’m explaining why vision is important for learning

(Twirl, jazz hands, sunset arms),

AGAIN!

I hand out the dozens of pages of resources on CVI I printed out, stapled and highlighted the night before for the teacher, the TVI, the principal, the therapists, the administrator, the AAC lady, the baker, and the candlestick maker

(one, two, three, one, two, three, cha-cha-cha, frantic tap solo)

TA DA!  (Big flourish! We are all on the same page!  It’s a new year!  Cartwheels, sparklers…Go TEAM!)

E may be allotted 30 minutes/week.

If I push,

45 minutes/week of “vision time.”

Vision time” as direct consultation, that is direct time between the Teacher of the Visually Impaired with my girl.

(Insert “WAH-WAH” noise here.)

And time continues to pass.

Another school year, another struggle to reach her, another group of people to convince that she can learn if she has access to her environment.  If they believe in her.

Excuse me, I have to go find something in my closet.

 

 

 

“Kids Can’t Wait”

The actual quote from a comment to the first post on CVI Momifesto was

“In a perfect world, all TVIs would be knowledgeable and endorsed, but kids can’t wait.

The quote came from Ellen Cadigan Mazel, M.Ed. CTVI.

Ellen is a Cortical Visual Impairment Advisor with many years of experience working with children with deafblindness, and 10 years of experience working with Dr. Roman-Lantzy.  She created her blog, CVI Teacher, in 2014.  Ellen is at the forefront of raising awareness about how to educate children with CVI. She also teaches Cortical Visual Impairment: Assessment and Education in the Visual Studies graduate program at the University of Massachusetts Boston.

She is right.  Kids can’t wait.  The families can’t wait either.

When writing the CVI Momifesto, I very specifically used the term “CVI Endorsed” professional, educator, or therapist.  I did not write Teachers of the Visually Impaired.

I knew this would start a conversation.  It is an important conversation to have.

Parents of children with CVI should know the following: 

Teachers of the Visually Impaired are not automatically equipped to assess and to work with a child with Cortical Visual Impairment just because they are TVI. 

Graduating from a university training program for visual studies does not prepare new TVI to support children with CVI.  They are not trained in the history of CVI.  They are not taught how to use the CVI Range.  They are not trained in making a CVI schedule, accommodations or modifications to a child’s home and school environment.

That’s right, folks.  Cortical Visual Impairment is the #1 pediatric visual impairment in the Western world, yet, our university training programs for teachers of the visually impaired do not cover it in depth (or -stunningly- AT ALL, in some cases).

In case you missed this last part, university training programs (with the exception of the Visual Studies program at the University of Massachusetts Boston) in the United States do not prepare teachers of the visually impaired for children with CVI, the most common pediatric visual impairment.  These programs are supposed to be preparing the educators we, as parents, need to be our first guides and mentors in all things CVI.  They have not risen to the challenge.

Parents need to know this in order to ask very specifically for a TVI, teacher, or therapist, who has completed the Perkins-Roman CVI Range Endorsement. It is a training program offered by the Perkins School for the Blind.  The program was established because of the lack of interest in CVI by the folks who create curricula for VI teacher training on the university level.

I  learned about the current lack of teacher training in CVI years ago, when I began asking questions about why it was so difficult to get CVI even acknowledged in the public school system, let alone find a teacher who understood it.

Kids can’t wait.  But, they do.  Way too often.

We experienced the lack of CVI trained educators over and over again.

I knew I was in trouble during the first meeting with a veteran TVI assigned to our daughter’s first preschool classroom.  I asked her what she knew about Cortical Visual Impairment.  (I had met some of the children she already worked with in the school system and knew that at least 2 of them had also been diagnosed with CVI.)  She thought for a moment, then said, “Oh yeah, I had a kid like that about 20 years ago.”

Flummoxed.  That would be the word I’d use to describe my reaction.  I recognized that she had kids with CVI on her current caseload and I AM NOT A TVI.  Over time, I also realized that she had made no accommodations for those children in their educational settings.  She had not trained the teacher or the aides in the classroom on how to engage a child with CVI.  A month after school started, she dropped off a box of materials from the American Printing House for the Blind.  The aides sorted through the materials without any assistance from her.  Eventually, they sat my daughter in front of a light box with a spinner for “vision time.”  (That sound you just heard was my head banging on the table as I remember this.)

Kids can’t wait.  Yet, they are, and that is unacceptable.

Children with CVI and other sensory loss are sitting in classrooms right now being taught by teachers who do not understand how the children access their environment.   They are missing out on a lot.  This thought makes me crazy.

WHAT YOU CAN DO

Begin conversations with new providers, teachers, therapists, and yes, Teachers of the Visually Impaired by asking about their training and experience.

We have the CVI Endorsement now, so you can ask them if they are CVI Endorsed through the Perkins School for the Blind.  Their reaction will tell you a lot.  Don’t take no for an answer.

You are within your legal rights to demand a provider who has the expertise to work with your child’s vision loss.  It is critical not to overlook this piece of your child’s team.  

What our children need is not extra.

It is access.

(This statement is stolen directly from a presentation by Julie Durando of the Virginia DeafBlind Project.)

If a TVI without a CVI Endorsement says she will do a CVI Range on your child, tell her to put the CVI Range down and no one will get hurt , er, go get some training.  Without the endorsement, her assessment will not give you an accurate result, nor will it give you accurate accommodations and modifications.

You can do it.

Our kids are waiting.

 

 

More

 

 

 

 

Momifesto: A definition

Welcome!

If you have found CVI Momifesto, you are likely searching for resources for a child you love or work with who has received the diagnosis of Cortical Visual Impairment.

You may find that the search leaves you with more questions than answers.  You may find that experts in CVI are few and far between.  You may feel isolated and overwhelmed.

I did.  And, as the mother of an 11-year-old girl with CVI and other diagnoses, I still do.

Despite years of research and discussion about Cortical Visual Impairment (also termed “Cerebral” Visual Impairment in an ongoing debate), there remains a significant lack of understanding about CVI in medical and educational communities in the United States.

I am acutely aware of how hard it is to get answers about CVI and how it affects your child’s development.  I have been fighting an uphill battle since my daughter was diagnosed to get her therapists and teachers to take CVI seriously.

Over the past few years, I began reading comments on Facebook pages about CVI.  I saw posts from parents of newly diagnosed infants and toddlers struggling with the same questions I had a decade ago.  I see in the posts of new parents the same anxiety and frustration I have been experiencing from preschool to – gasp – 6th grade.

There has got to be a way to make life easier for children with CVI and their families.   We need to form a community.

We need a manifesto. 

Manifesto:  a written statement declaring publicly the intentions, motives, or views of its issuer. 

(Thanks, Merriam-Webster!)

A written statement declaring intentions, motives, and views of issuer….yes.

This is a good start,

however,

it lacks the drive and the passion of all of the moms who are

staying up late googling CVI,

making copies of research for early intervention teams,

creating homemade “Little Rooms,”

painting the backgrounds of board books with black paint,

cutting out picture after picture to make experience books,

buying out the local slinky supply,

attending conferences and workshops,

fighting with the school to provide larger, less complex text “bubbled” in red,

arguing with the school psychologist that her child’s “behavior” problem may be a visual problem instead

and on and on and on.

I see you, ladies.  I’ve met you at conferences. I’ve seen your posts of incredible D-I-Y projects geared towards bringing the world to your child. I’ve read about your child’s progress and your challenges.  I’ve heard stories about you from therapists who work with your child as well as my own.

There is a vibrant and committed community of parents out there every day trying to raise awareness about CVI on their own.  After 11 years, I see that doing it on our own is not working as quickly or as well as we need it to.

Getting the services our children need to have ACCESS to their world should not be so difficult.

To raise awareness about Cortical Visual Impairment, we need a manifesto with a MOM in it.  Moms get stuff done.

(P.S. This is in no way meant to dismiss the contribution of CVI Dads. I’m a mom. It is the perspective I bring to the table. Plus, you have to admit, “CVI Dadifesto” just doesn’t have the same ring to it.)

So, how about this? (Apologies to Mr. Merriam and Mr. Webster)

Momifesto:  a written statement from a frustrated mom publicly stating her intentions, motives, and views about what needs to be done for children with CVI.

I present, for your perusal (and subject to change as I get better at this...):  

CVI Momifesto

  • Children with Cortical Visual Impairment need to receive an accurate diagnosis from a pediatric ophthalmologist or a pediatric neuro-ophthalmologist within the first year of life.
  • Once diagnosed with CVI, children need to be quickly referred to their state’s early intervention system because the treatment for CVI is an educational approach of modifying the child’s environment and training parents and caregivers to introduce the world to the child in a specific, strategic way. 
  • Each state’s early intervention system must be able to address the unique needs of children with CVI by providing frequent, ongoing home visits from a CVI endorsed early interventionist.  (Notice I did not say Teacher of the Visually Impaired.  More to come on that later.)
  • At preschool age, every child with CVI needs to transition to a school placement with CVI endorsed professionals on staff to accommodate the child’s unique learning needs.
  • Parents of children with CVI must be included as an expert voice on their child’s IEP team.
  • School systems must recognize the need for specialized education in CVI for their teachers and staff.  CVI endorsed educators, therapists, and aides must be available to children with CVI in both public and private school settings.
  • The general public needs to acknowledge CVI as the #1 pediatric visual impairment in the Western World.
  • The community of parents, doctors, educators, and therapists who work with children with CVI need to come together to advocate for changes in public policy to improve the educational outcomes for our children.

My motives are simple.

I want to reach my child.

CVI affects my daughter’s access to her environment.

I need to help her get access to the world around her.

Like every parent, I want her to be as independent as she can be.  I want her to be safe. I want her to experience joy.  I want her to know she is loved.  I want to communicate with her.  I want her to be able to communicate with others.

Cortical Visual Impairment makes all of this more complicated.

But, not impossible.

She matters.  Every child with CVI matters.

For our children to see the world, the world needs to see our children.

It is time.

Stay tuned.