Moms on Monday #23 / Jamia from CA

MOMS ON MONDAY

Your first name:  Jamia

Your child’s first name and age:  Jaxsen, 3 years old at the end of May

State:  California

Jaxsen is very fast paced.

Jaxsen
Jaxsen, age almost 3

 

If you ask him to sing he will sing the same note for five seconds then he will wait for everyone to clap and tell him how great he sounds.

 

 

He loves music. I mean he loves music so much; it makes him so happy.

 

 

As a family we listen to music together. He likes going on walks and being outside.  He likes the rain and the sun on his skin.

 

 

 

 

 

When did you first learn about CVI? 

When I first saw the ophthalmologist when my son was 6 months old.  The doctor mentioned it after my husband did some research.  When I asked the doctor about it, he told me that Jaxsen could not be diagnosed until he was 12 months old.

How were you given the diagnosis?

Well, we researched it.  Then we knew everything matched up.  And, when we were in the NICU, the neurologist told us the only part of his brain that had suffered damage was the occipital lobe.  So, they told us from that day his vision would be affected.  When we were given the diagnosis at his 12 month appointment, it was kind of like “He has CVI.  There’s nothing you can do.”

Does Jaxsen have other diagnoses?

He has no other diagnoses.

How was his Early Intervention experience with regard to CVI?  (Were your providers knowledgeable?  Were they open to learning?)

When we started receiving early intervention, it wasn’t based on his visual impairment.  In January 2017 I went to the neurologist.  She asked me if we were receiving services like Braille.  I said no.  That day I walked out of there and called our Inland Regional Center to ask why he wasn’t getting vision services.  She told me she didn’t know he had a “visual issue.”  I was extremely mad and upset because she was supposed to be helping him and our family.  Only our Braille teacher was knowledgeable about CVI.  Then, because of the county I live in, we could receive services from Blind Support Services.  It got to the point that the head person left and the new person who came in didn’t know anything about CVI.  The Braille teacher was the only person who knew about CVI but we only got to see her one or two times a month.

How is CVI being addressed in your child’s school setting? 

We haven’t started school yet but we will this year.  He will be getting an Individualized Education Plan (IEP) by his 3rd birthday.  He will get Orientation and Mobility and a TVI.

What do you know now that you wish you had known at the beginning of your journey as Jaxsen’s mom? 

How I could help him learn to see because I still don’t know.

I wish I had a better support system.

I haven’t found parents that have kids like my son.

I don’t know what to expect.

I’m scared because he was my first child and it was the hardest thing I’ve ever done.

What would you tell a mother whose child has just been identified as having CVI? 

Seek help.  You are your child’s biggest advocate.  People will tell you there’s nothing you can do but there’s always something you can do.  Never stop fighting.

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

Seek help.  Search the web and look for help.

Hopes and dreams?  Anything else you’d like to add?

I hope he will be able to learn to see.  He is the best thing that has ever happened.  I hope he’s able to find love and to have children.  That’s the hardest part to think about for me.

 

Thank you Jamia for sharing your story about your beautiful boy with other CVI families!  Thank you for putting California on the map of states we have collected stories from!  

 

 

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

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

Spring. Break. 

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

Two.

More.

Days.

Spring Break.  I give.  Uncle! You win.  

But I digress.

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

The 5th Annual Perkins CVI Symposium

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

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

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

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


 

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

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

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

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

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

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

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

 

Kaleidoscope: The Cortical Visual Impairment Podcast

Here is a link to this wonderful collection of stories:

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

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

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

But I digress.

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

—————————————————

Jessica’s Highlights from the 2018 CVI Symposium

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

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

 

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

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

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

 

Presentations

A Parent’s Perspective:  Burju Sari

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

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

Research:  Dr. Lotfi Merabet

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

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

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

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

The CVI brain is underconnected.

The CVI visual system is more sensitive and less robust.

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

CVI Range (Roman): Ellen Mazel

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

Best Practices:  Dr. Christine Roman-Lantzy

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

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

—————————————————

BUT

There may be a problem for students with CVI.

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

—————————————————

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

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

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

Assessment: CVI Range with CVI Range Endorsed person

Education

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

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


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

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

http:/www.perkinselearning.org

Looking forward to the 2019 CVI Symposium:

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

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

What will you learn from the “experts”?

What will the “experts” learn from you?

Will you find “your people”?  

 

And,

 

the burning question on everyone’s mind…

 

 

 

Who wants pie?  

 

Okay, that last one may just be me.

Two more days.  Sigh.

See you in July maybe?

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Up and Moved, Part 2ish

Good morning fellow families of perplexing yet adorable children who happen to have Cortical Visual Impairment among their list of diagnoses…

If you have been following this blog for any length of time (a super-sized cup of gratitude to you), you may have noticed that there hasn’t been much activity over here at CVI Momifesto over the past few months.  You may know from the post Up and Moved, Part 1 of ? that this is largely due to the fact that moving is like throwing your life into a blender.  This is also due to the fact that immediately after moving I started a new job and any remaining time left in the week has been spent filling out forms to secure medical and educational support for my complicated kid, and occasionally – if absent mindedly – patting her older sister on the head.

Sometimes, for fun, I do laundry.

Sometimes I think, “Oh!  That would be a great blog post!”

Then I go home where we are still living out of boxes and think, “Oh! My house looks like a particularly tragic episode of Hoarders!”

And everything just sort of spirals downward from there.

From a vision standpoint, being surrounded by clutter I haven’t been able to sort through yet really drains and distracts me.  I am a typically sighted person.  My experiences in this move have heightened my awareness of CVI and the amount of energy it takes to process visual information.  Bonus: the extra helping of guilt that I can’t get a handle all of the piles of stuff fast enough to create a more accessible living arrangement for Eliza.

We haven’t been able to find the services we need to make our lives work here so it’s ALL ELIZA ALL THE TIME!  And, it’s a new home, new routines (or lack thereof), new school, new doctors, new transportation and so on.

This is not a kid who thrives on change. So, moving, introducing new – well – everything AND having her first (severe) exposure to poison ivy wasn’t the best way to introduce her to Smassachusetts.  It was, as they say in the South, a hot mess.  Heck, it wasn’t even a hot mess.  It was a lukewarm, stale mess.

At a 3 1/2 hour IEP in December, one of the school staff commented that it was as though Eliza was “shell shocked” for the first month or so when she started school.  The stricken look on my face made her scramble to come up with a new description, but I understood.  I felt that way too.  I feel that way most days even when we haven’t just moved.

Proud parenting moment though.  Who among us doesn’t want to have their child described as “shell shocked?”!  #Winningatthismomthing  

(Random Mom side note: I have been informed by my teenager that no one uses hashtags anymore.  My last desperate attempt to relate to you whippersnappers has failed.  #cronelife )

Speaking of school – I’ve used the phrase Death by IEP to describe my feelings about the marathon meetings we have had with educators and administrators in – oh, how many is it now? – 5 states in 12 years?  Argh.  I do not recommend trying this at home by the way.  Leave it to the professionals.  

The phrase still applies.

IEPs.  Boy, have we had ’em.

I had hoped that an appropriate school placement would be easier to find here.  The school district we moved into had other plans.  Oh, they could accommodate her alright.  But, she couldn’t start school with everyone else.  She sat at home with me for the first week of school, in the sad episode of Hoarders, clinging to me as though she was about to fall off a cliff.  This meant I had to delay starting a new job.  Bills?  Who needs to pay bills? 

And, the school administrator wasn’t sure about transportation but he would get back to me in a few weeks or so.  Because who really needs specifics about when and where your non-verbal child is being driven in a vehicle with people you’ve never met? 

And, in those weeks when he’s getting information, she’ll just get up and walk the 3.7 miles while I go to work.  Right?  Oh, the confidence we felt in this new situation. 

And, we had a surprise visit to the emergency room on Halloween after the tubing in her g-button broke during a g-tube feeding at school. (On the plus side, I now know a lot more about what kind of nurse/student ratio our kids need AND I’ll share.) 

FAPE:  Free and Appropriate Public Education at it’s best.   (If you thought you heard a soul shattering primal scream during the first weeks of September and again on Halloween, you did.)

And, there is so much more, but we have had hours of meetings, hired an advocate and are using the proper channels and so forth….

Let’s just say that this photo borrowed from the interwebs accurately mirrors my feelings about so many things regarding this move, but especially, our school experience thus far.

top09-kellyclarkson.

Photo:  Steve Carell in the film, The 40 Year Old Virgin, screaming after his chest hair has been waxed.  My apologies to Steve Carell and Kelly Clarkson

Never fear, gentle readers and fellow families, I am bent but not broken. I am overwhelmed but not smothered.   I know that Eliza has untapped potential.  I am determined to get her where she needs to be.  I am determined to find the people who can teach us both how we fit in this world.

Some days I don’t feel as though I am up to the task. Especially when Eliza’s sleep patterns revert to what they were when she was a toddler who never slept.  Never. Slept.  When every muscle aches to the core and I can’t keep my eyes open but the laundry never takes a day off.  When I want to write something but there are dozens of pages of applications to fill out.  When I’ve spent the last 3 days sleeping on the floor outside her bedroom to curb her nighttime roaming.  When all of this happens I have learned that it is okay to sit and feel what I am feeling without judgement.

Then, I take a nap in my car.

Also, I find that a little primal screaming and dark humor can help me find my way. Sorry, Kelly Clarkson.

I  have faith that I will find a team of folks to help us.  I have done it before.  I also realize that it can take up to 2 years to find the right therapists, caregivers, doctors, and – yes – school placements.  It is the perpetual jigsaw puzzle that is our life.

If you are the parent of a child with special needs, I’ll bet you can’t relate to this.  AT ALL.

 

 

 

 

 

Up and Moved, Part 1 of ?

Hello Fellow Families of Ridiculously Attractive Children who happen to have been identified with Cortical Visual Impairment!

I have thought about writing a post for so long.  There’s so much to say and so little time to get it right.  I judge myself and it doesn’t get done.  We are in a time of transition.  I keep turning inwards into myself and asking the same questions without new answers.   There is a familiar feeling of despair nagging at me.

I woke up this morning with an idea in my head.  I am going to stop judging myself and get it out there.

I may need some serious help here.  I will get to that eventually.

I spoke to my aunt yesterday and I found myself repeating my mom’s favorite saying, “I always do things the hard way.”  I used to roll my eyes when she said that.

Now, I have come to understand that when you have a child who is one in a million (quite literally) the hard way is often the ONLY way because you are breaking new ground and learning as you go.

But, not always.  My mom could have asked for help more often.  The results may have pleasantly surprised her.

The most important lesson Eliza has taught me is that asking for help can bring you information and support you never thought possible.  And, if it doesn’t, no harm done.  I’m used to doing it the hard way.

—————————————————

Two months ago, we up and moved.  (“Up and moved” is a particularly Southern phrase that implies doing something quickly.  Which is true.)

Our family’s life circumstances had shifted significantly.  My older daughter was about to start high school.  There was nothing keeping us in the state of Virginia.  I had been taking Eliza out of school half days to do private ABA therapies for various reasons.

I could not sustain the schedule of creating and maintaining an educational and behavioral program for her.  It was more than one person could do.  I didn’t feel particularly successful at it.

I am used to this feeling – the need to find someone who understands her better than I do.  Who knows HOW to teach her to communicate and to engage more with the world.  I am used to fighting battles and asking for more than IEP teams think is necessary.

In this instance, I needed to choose my battles and look at the big picture.

Eliza turned 12 this summer.

We needed to think about what we want her life to look like at 22 when she ages out of the school system.

We started entertaining where we would go if we could go anywhere.  Eliza would need to be in a state with good educational opportunities, a strong support network and good transition services for when she becomes an adult.  My older daughter should be able to start and stay in the same high school.  My husband and I would figure out how to make this work.  That’s what parents do.

So, we jumped, er, moved.  From Virginia to a state that rhymes with Smassachusetts.

Two months ago.

My husband, my older daughter and I packed and carried our house out the front door and into two Pods.  We made the trip to Smassachusetts and back to Virginia several times in two weeks.   It is not an exaggeration to say there was a little blood, so much sweat, a few tears, and a recurrence of carpal tunnel syndrome.  We went through several bottles of Aleve.

It has been intense. Some days I HATE our stuff.  Who needs more than 2 towels?  Why do we have so many socks?  ONE pair of shoes should suffice, people!  One pan, one lid.  One fork, one spoon, one plate. Throw the rest away!  (I get that this is a 1st World Problem.  I do.  Forgive me.  Just had to vent a little.)

And, the files – the medical records and educational records from a decade plus.

A little light reading to relax me –

AHAHAHAHAHAHAHAHAHAHAH, wipes eyes and catches breath, AHAHAHAHAHAAHAHAHAAHAHAHAHAHAHAHAHAHAHAHAHAHA, sniff. Sigh.

Sorry, I couldn’t write that with a straight face.

It’s necessary to decide where to keep them for quick reference.  There is so much information – maybe I should let some of it go,

but,

there are still many questions with respect to what makes Eliza  Eliza.  

Maybe the answer is in one of the reports and science just hasn’t caught up to her yet.

Maybe someday SOMEONE will be able to help me understand what we’ve lived from a medical perspective.

For that, I keep the records, in bags by the bed for now…like the master of domestic organization I am.

We continue to dig out from boxes and piles of laundry.

It has NOT been an ideal environment for a child with CVI.

moving
NOT a great environment for a child with Cortical Visual Impairment

The first few days she was most content sitting in the laundry room clinging to my legs.  It made sense.  The room is small.  Everything is off white – a clean visual palette.  The vibration of the dryer was comforting. I sat on the floor with her several times those first few days commiserating with her that we had found the only spot in this new place that didn’t look like a tornado had hit.

Looking at the  piles of boxes and clothes and furniture exhausted and irritated me.  I couldn’t exactly understand how frustrating it was for her, however, the way she clung to me like a drowning person gave me a good idea.

We made her and her sister’s room first priority to give them a place of respite from the craziness of a move.   She is laying in her room listening to music right now.  And, now she’s shuffling down the hall.

I will pick this thread up again soon.  I would like to tell you what is going on and to see if you have any insight.

From my spot on the distant periphery, I see CVI moms shaking up the status quo and creating real change in their local education and support systems.

It occurred to me this morning that I am not alone anymore.

Until I can share more, I (the master of domestic organization that I am) have a handy dandy tip for families who have just moved.

When you move to a house without a single curtain or window shade and you are in a pinch….

window treatment
Quick and easy window treatment for families who up and move!

….Halloween decorations make GREAT window treatments!  And, in August, they are ALMOST appropriate for the season!

window treatment 2
Hello SMASSACHUSETTS! We are YOUR new neighbors, you lucky ducks!

The AER Resolution, where’d it go?

CVI Momifesto is up to her eyeballs in a new move and hammering out a new placement for her daughter with a gorgeous smile, curious nature, and multiple diagnoses including CVI.

THIS has happened. THIS is happening.

Start Seeing CVI, Brenda Biernat, and CVI Moms are on it.

Please read. Please be aware that as we are blazing a new trail there are individuals who have different opinions about which way we need to go.

Start Seeing CVI

The AER Resolution, where'd it go? The AER Resolution, where’d it go?

You may remember last July, when we discussed a certain resolution that targeted students with cortical visual impairment (CVI), and the CVI Range (Roman-Lantzy). The Resolution was presented at the International AERBVI Conference in Reno, Nevada. Resolution (AER-2018-00) was presented on site  without prior notice, without warning, and hastily “passed” (absent members were denied the opportunity to vote). These are extreme tactics that are all too concerning in these political times.

View original post 757 more words

What a difference a year makes

 

 

Hello Fellow Families of Glorious Children who Happen to Have Cortical Visual Impairment!

One year ago today, I published the first post of CVI Momifesto as a way to vent and to gain perspective of my experience as the mother of funny, strong willed, curious girl who happens to have several diagnoses and who also happens to be cuteness personified.

It’s been quite a year.

I wanted to comment on the year in this post.

But, as happens with life and especially with life with a kid with special needs, a lot happened over the summer.  There hasn’t been much time to process or to have a coherent string of thoughts.

I started to write a post about the year and the summer.

This is what I wrote instead:

Over the past 3 months, my girl, Eliza, has turned 12 and graduated from elementary school.  She wore the same dress her sister wore when she was 12.  She enjoyed  being a part of the ceremony, grinning from ear to ear as she walked by all of the kids dressed up in their fancy graduation clothes.  She laughed with her teacher. She danced with her dad after the festivities.

This kid.

This kid came into the world defying odds given to us by doctors in starched white coats.
Baby E blk white

This kid turned 12.
my girl E at graduation

There was so much drama around her birth.

The Doctor.

In the whitest coat I’d ever seen,

with the beard trimmed so precisely

I sometimes wondered if it was fake.

The doctor observed us,

the anxious couple

husband and very pregnant wife

from behind the safety of the desk of polished dark wood.

On the wall,

framed diplomas and plaques attested to the

depth and breadth

of his

infinite

knowledge.

On a shelf to my right,  a book caught my eye.

How to Give Bad News.”

(It’s interesting the things you remember at a time like that.)

It was a very serious moment from a very solemn doctor in a very white coat.  The moment demanded a lot of “verys”.

Everything was “VERY” in screaming capital letters.

The Doctor told us she would never

walktalkbreatheswallowseehearspeak

It all became one long horrible word to my grasping, uncomprehending brain.

Basically, you name it.

She wouldn’t do it.

As a matter of fact, she would probably never leave the NICU.  She would have no quality of life…..medicallyobligatedtoadvisetermination….

He really needs to reread that book.  He sucks at this.  VERY.

It’s interesting the things you think at a time like that. 

Then,

I kid you not,

Eliza – who had not been much of a mover or a shaker in utero – did a full on somersault as if to remind me just who we were talking about here.

The sudden shift in my body

the VERYEST

literal

punch

in the gut.

—————————————

The Doctor,

VERY knowledgeable about many things

the rectangles on walls behind him told me so,

had many other things to say after that.

But, I couldn’t hear them.

Because Eliza had reminded me that she had not  been given her say in the matter.

———————————————-

We didn’t listen to The Doctor much after that.

———————————————

She arrived VERY quickly,

about a month later,

on her own terms,

without the horror story he had predicted.

 

The doctor called me in the recovery room later that morning.

 

“What gives?” he said.

None of the customary pleasantries you might expect to give someone who has just given birth.

I explained that she hadn’t needed all of the medical interventions he had predicted.  No NICU.

A pause.

Then, he said,

not a little smugly,

“Well, let’s see her when she’s 5.”

See that?  See what he did there?  

“Let’s see her when she’s 5.”

What The Doctor could not know – what I could not know – was that that phrase launched my journey with this kid.

That smugness

that assumption

that five years would prove what a mistake we had made.

The cold clinical certainty that her life would not have value.

And that it was

his

decision to make

Sparked a fire in me that exists today.

When she did turn 5, I thought a lot about taking Eliza to see The Doctor again.

I thought a lot about it.

I entertained many a revenge fantasy about it, to be honest.

Some vandalism may have been very entertaining in a couple of the fantasies, but I’ll just leave that there.

She was keeping me pretty busy at the time.

I ultimately realized

If I did take her to see him,

because she is built a bit differently than your average kid

(whatever THAT means)

He could look at her

and feel completely vindicated.

I,

looking at the same girl,

knowing her the way I do,

would happily introduce

him to her

in all of her unique Elizaness,

(Maybe I’d hire a mariachi band to accompany us to his office for an introduction?  Fireworks and a pony for everyone?  Too much?) 

and feel completely vindicated.

And, there you have it.

Our impasse.

Proving him wrong was not the way to go about this.

There was nothing to prove.  

We have a life to live.

I live with a beautiful, challenging mystery of a kid who has screwed up my sleep for the past 12 years.  I’m still trying to figure her out.  Sometimes I lose my patience.  Sometimes she loses hers.  She pats my arm and pulls me close for kisses.  She loves her people.  She is intensely curious about the world.  Nothing thrills her more than holding hands and running with one of us in an open field.

I am embarrassed to say that I have only recently – too recently – figured out that she understands more than I gave her credit for.

She loves me in spite of my imperfections.  She accepts me for who I am.

We remain a work in progress.

 


 

So, a year ago today, I started a blog to get some of these stories off of my heart and out of my head.

There is work to be done, yes.  But, we have nothing to prove.


 

Holy cheese!  I just wrote about Eliza’s birth on Labor Day!  I just got that!  And, it’s 3 a.m. so I’m keeping this ridiculous exclamation right here!  Huzzah and so forth!

Good night! Or Good Morning! Or Whatever!

 

 

 

 

 

 

 

 

 

 

Nothing is Written in Stone: Looking at the AER 2018 Resolution with Dr. Sandra Newcomb

Hello fellow families of magnificent children who have been identified with Cortical Visual Impairment!

Long time, no blog post!

So, after the success of the American Conference on Pediatric Cortical Visual Impairment, I decided to dial it down a bit and spend some time with my family.  And, learn to play the ukelele, and run 3 miles every other day, and binge watch Fargo.

In July, a CVI mom friend of mine reminded me that Eliza’s older sister, AC, needs as much time and attention as I devote to E and her special needs.

AC’s life looks a lot like this a fair amount of the time.
IMG_0861

 

Or this….
sister squish
Upper:  Two girls in a rope door swing.  One girl is asleep on top of the other.  The girl on the bottom is smiling and holding a book.  Lower:  Two girls smiling and wrestling.  The younger girl is laying on top of the older girl who is grinning good naturedly at being squished.

 

AC is as kind as she is clever and funny.  Sometimes I need to be reminded that this kid needs her time too and I have to extract her from Eliza’s bear hug.

And, she starts high school in a couple of weeks.

WHEN DID SHE

AC baby

 

 

GET OLD ENOUGH TO GO HIGH SCHOOL?

Who is responsible for this?  I want to lodge a complaint.

Excuse me, I have to go hug the stuffing out of her….

Okay, I’m back.

So, I adjusted my to-do list.  I spent as much time with the teenager for as she would allow and I watched Fargo.  Success!

I hope you had some fun this summer.  I hope you had the chance to spend time with your favorite people.

Did anything interesting happen while I was gone or rather lurking in the background reading stuff and taking mental notes for the future?

Well, yes, yes it did.

Something interesting and rather unusual DID happen this summer as an attempt to affect the education of children with vision loss, and specifically Cortical Visual Impairment.

This summer, during the International Conference for the Association for the Education and Rehabilitation of the Blind and Visually Impaired (AER) in Reno, Nevada, a resolution which included very specific language about the CVI Range was put forth, voted on, and passed by the attending members.

You need to be aware of this resolution.

AER and the authors of this resolution are making a statement about the work of Dr. Christine Roman-Lantzy, the CVI Range, and the recent attempts of parents to advocate for the appropriate education of children with Cortical Visual Impairment.

I have a few comments on this resolution, however, I thought it best to first ask for comment from Dr. Sandra Newcomb, from Connections Beyond Sight and Sound at the University of Maryland.  Dr. Newcomb’s research, published in the Journal of Visual Impairment and Blindness in 2010, validated the CVI Range.

Dr. Sandy read the resolution and added comments.  She very graciously allowed me to post her comments with the resolutions.  Most of her comments are in blue.  Emphasis is mine. When I got really emphatic I posted her comments in BOLD RED.


 

Proposed Resolution of the Association for Education and Rehabilitation of the Blind and Visually Impaired: July 2018
Assessment, Services, and Personnel Preparation to Support Students with CVI and their Families
Resolution Number 2018-001
Authors: Yvette Blitzer, Kathryn Botsford, Olaya Landa-Vialard, Sandra Lewis, Mark Richert, and Ye-Ting Siu
Whereas to receive a truly free and appropriate public education under the Individuals with Disabilities Education Act (IDEA), all children and youth with visual impairment, including those who may have additional disabilities, should be properly evaluated by teachers of students with visual impairments (TVIs) who are equipped with and use multiple assessment tools to determine such students’ individual sensory channels, functional vision, and learning media needs;
Whereas these types of evaluations are especially critical for the large and growing population of students who experience neurological visual impairment (frequently otherwise known as cortical or cerebral visual impairment; hereinafter, children with CVI);
Whereas TVIs must also have access to resources and participate in professional development opportunities in order to keep up with the changes in the diagnosis and assessment of CVI and appropriate interventions to minimize its effect;
Whereas whenever possible, assessments conducted by TVIs should include (as called for in IDEA) a variety of research-based, data-driven, and validated tools and strategies to gather relevant functional, developmental, and academic information;

 
Whereas there are currently no assessments available to TVIs that adequately address all the possible effects of CVI and/or meet the exacting scientific standards for research-base, and validated evidence; No assessments of what? Functional vision? Academic achievement? There is an assessment that meets scientific standards for reliability and validity for assessment of functional vision. Newcomb 2010, JVIB

 
Whereas frameworks for functional vision and learning media assessments commonly used by TVIs today are nevertheless based upon recommended practices in the field; But “practices in field” is not defined here.  There is evidence that current practices are from TVIs who have been trained using an ocular model of VI and of functional vision. There is valid research that describes the differences in ocular and cortical visual impairment.  This research reveals the frameworks for ocular are not appropriate for cortical.

 
Whereas there are multiple assessment tools, frameworks and strategies available for use by TVIs when conducting a comprehensive assessment of the visual functioning and sensory channels of children with CVI, the use of which serve to support of IDEA’s mandate for the use of multiple assessment tools; IDEA mandates assessment of functional vision, or how the vision impairment has an educational impact. Multiple tools are used for assessment of multiple constructs (medical tools for diagnosis, curriculum specific tools for achievement, speech/language tools for communication, etc.) These are the multiple tools for getting a comprehensive picture of a child with multiple challenges.

 
Whereas the CVI Range by Christine Roman-Lantzy is but one assessment designed to provide information on the visual and sensory functioning of children with CVI; It is only one assessment, however, in my review of the literature (both for dissertation and ongoing review) there is no other assessment developed for assessment of functional vision for children with CVI.

 
Whereas a package of continuing education opportunities bundled under the Perkins-Roman CVI Range Endorsement brand, and any other continuing education opportunity, are valuable resources to teachers and others who wish to hone and test their skills in the administration of the CVI Range; To date, Perkins has the most continuing education opportunities relative to CVI and to children with multiple disabilities.

 
Whereas some proponents of the CVI Range and the related endorsement are seeking to have policymakers and state and local education agencies require the use of the CVI Range and to require TVIs to obtain the endorsement as a condition on such TVIs’ provision of special education to children with CVI; Who are the proponents? And why should a local system NOT require the use of the only tool that is appropriate to assess the functional vision of children with CVI?

 
Whereas a TVI’s failure to obtain specifically branded continuing education opportunities, even if such opportunities are marketed as an endorsement, and completion of professional training in an assessment tool alone is no indicator of a provider’s preparedness to conduct appropriate comprehensive assessment or provide appropriate special education programming to children with CVI or any other students with visual impairment; Branded? Marketed? Why is it not appropriate for a professional to demonstrate proficiency in an assessment tool that they need to use? There are no other assessments (in any domain) that teachers do not need to be trained on to administer. This is especially critical when the tool relies on the teacher’s observation skills as the primary means of gathering information. When an assessment tool relies on teacher observation, it is critical that the teacher demonstrate he/she is reliable in their observations, otherwise the scores on the assessment are not meaningful.

No assessment in any domain can guarantee that a teacher is able to adequately provide meaningful interventions; however, lack of appropriate assessment data on which to base intervention strategies will guarantee inappropriate or inconsistent interventions.

Only when you start with an appropriate assessment can you hope to design appropriate, individualized, and targeted interventions.

 
Whereas university teacher preparation programs are addressing the needs of children with CVI and their graduates have beginning-level competencies and skills, which can be honed through experience, mentoring, and additional professional development; I have not seen any data, no published data nor anecdotal data, that indicates that university programs are addressing the needs of children with CVI, even at a beginning level. My experience on the MD/DC deaf-blind project, my private work in VA, NJ, WV, KS, and PA, and CVI mentoring in MS and GA have shown just the opposite. Parents and teachers are not prepared to meet the needs of children with CVI. They lack information and training, even some recent graduates of vision programs.

 
Whereas some states allow for individuals to circumvent university preparation teacher training and permit licensure of TVIs via (a) minimal coursework or a (b) test-only credential and functionally allowing individuals without adequate training in assessment of children with ocular and/or neurological-based visual impairment, or program development to assess, plan, and deliver services to children with visual impairments including those with CVI; This should never happen, no matter what state, for any TVI. States should not allow individuals to circumvent proper training.

 
Whereas individuals gaining TVI licensure via a test-only modality are not prepared to assess, plan, and deliver services to students with visual impairment, including those youngsters with complex disorders, such as CVI; Agreed!

 
Whereas it is imperative that parents and guardians of such students with CVI have accurate, complete, and unbiased information about the professional training and qualifications possessed by TVIs today who are evaluating and developing individualized education programs (IEPs) to meet such students’ unique needs; Agreed!

 
Whereas knowledge about neurological visual impairment and children with CVI is evolving rapidly, and a rich body of research and related developments from around the world promises to further enlighten and change educational practice over time;

and
Whereas requiring the use of a single specific assessment today, such as the CVI Range, or the express or implied imposition of brand-specific endorsement requirements on TVIs beyond state licensure and adherence to nationally recognized TVI standards puts students at risk of being denied the most up-to-date assessments and services and needlessly locks state and local educational agencies into practices and purported credentials with a limited shelf life that do not align with federal and state law and policy; For children with CVI, who must have (IDEA) a functional vision assessment, we must insure that the assessment is appropriate for children with CVI.

The CVI Range is, at this time, the only assessment developed to accomplish this task. While it is clear AER objects to “brand-specific” endorsement, there is nothing else that can insure that our children with CVI have an appropriate functional vision assessment.

This is the only the first step in appropriate intervention, but it is a step that cannot be missed or mishandled.

What are the “nationally recognized TVI standards” that include adequate information on CVI? What is more up-to-date? The phrase “purported credentials with limited shelf life” is very inappropriate and inflammatory, and a direct attack on the extensive work done at and through Perkins. The CVI Range endorsement aligns directly with the federal and state law and policy in that a child with CVI needs an appropriate functional vision assessment.
Now therefore be it resolved, that the Association for the Education and Rehabilitation of the Blind and Visually Impaired (AER):
1. encourages personnel preparation programs training new and pre-service TVIs and O&M specialists to include coursework in assessment tools, learning needs, and instructional methodologies to support the diverse needs inherent in the heterogeneous population of students with visual impairment, including those students with neurological-based vision impairment and those with additional disabilities;
2. encourages parents and teachers in all states to educate lawmakers and call for the abolition of “test-only” pathways to TVI licensure and require rigorous university preparation as the only option to gain licensure as a TVI;
3. encourages current and new TVIs to pursue continuing education and/or professional development opportunities and training to keep abreast of the ever-changing practices related to students with neurological visual impairment in order to effectively meet the unique needs of children with CVI;

 
4. encourages state chapters and divisions of AER to advocate for and promote the appropriate use of multiple comprehensive assessments, as mandated by IDEA, thereby honoring all students’ unique needs for appropriate and reasonable accommodations that recognize the diversity of functional vision, learning media, and literacy characteristics inherent in the heterogeneous population of students with visual impairment, including those students with neurological-based vision impairment and those with additional disabilities; while “multiple comprehensive assessments” are indeed necessary to address needs in a comprehensive way (communication, mobility, achievement, etc.), there are not, at this time multiple assessments to measure the functional vision of children with CVI.

 
5. urges the U.S. Congress, state legislatures, and state and local educational agencies to protect the integrity of comprehensive assessments conducted by TVIs both by rejecting calls that expressly or implicitly require the use of any single specific assessment tool or technique with specific populations of students with visual impairment and by refusing to impose specifically-branded in-service training requirements on state-licensed TVIs (prepared in accordance with nationally recognized TVI standards; Council for Exceptional Children (CEC) and Association for the Education and Rehabilitation of the Blind and Visually Impaired (AERBVI) as a precondition for providing special education to children with CVI or any other students with visual impairment; See comments above. The “integrity of comprehensive assessments” means that a TVI can use whatever measure or observation they decide.

 

This insures a continuation of TVIs providing inappropriate assessments for children with CVI and then basing interventions and accommodations on those inappropriate assessments. The cycle of inappropriate interventions and frustrated parents continues!

 
6. calls upon the U.S. Congress to promptly enact the Alice Cogswell and Anne Sullivan Macy Act, which, among other critical policy objectives, would significantly increase investment in quantitative and qualitative research, allowing our field to identify evidence-based practices in assessment and instruction for children with CVI and all other students who are blind, have low vision, are deafblind, or may have these conditions and additional disabilities;

and
7. shall disseminate this resolution online and using any other appropriate means to make it widely available to parents, TVIs, and all other stakeholders to ensure national, state and local communication of these matters.

NOTE: It is my experience that parents are pushing for The CVI Range endorsement because of the lack of professionals who understand their child and who can provide the interventions they need.

Parents are advocating for professionals that demonstrate some level of knowledge, training, and competence in CVI.

At this time, the Perkins-Roman endorsement is the only avenue they have to be sure the teacher knows something about CVI. Too many families are offered services that are inappropriate or worse, no services at all. They are given TVIs that do not understand the characteristics of CVI.

The parents are looking for some way to insure that the people who design programs for their child have some working knowledge of CVI. At this time, they cannot count on pre-service programs to adequately prepare vision teachers to address the needs of their child. They are demanding, or strongly suggesting the endorsement because, for now, that is all they have.

When university programs and national standards catch up to the current population of children with CVI, parents will have done their job of advocating and systems change, not only for their child, but for all children who have CVI.


 

So, how’s that for a little morning reading?

Take your time with this.  Think about it.  Ask questions.   There is more to come.

And, remember…

nothing

 

American Conference of the Pediatric Cortical Visual Impairment Society 2018

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

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

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

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

 

Introducing the PCVI Society!  

PcVI logo

 

From http://www.pediatriccvisociety.org

pcvi business

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

We care about kids with CVI.

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

Goals

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

1. Advance interdisciplinary education and research.

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

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

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

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

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

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

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

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

———————————————–

BECAUSE

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

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

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

———————————————-

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

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

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

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

IMG_0711

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

 

.

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

 

alice

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

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

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

——————————————————————————–

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

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

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

Clearly Helen had not expected that either.

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

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

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

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

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

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

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

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

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

Concepts are the ideas that give meaning to our world.

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

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

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

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

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

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

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

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

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

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

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

and

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

 

 

Lego Trees and Last Straws / Incidental Learning, Part Two

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.  

 

———————————————————————————-

 

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?)