communication – CVI Momifesto

Up and Moved, Part 1 of ?

October 27, 2018January 19, 2019 CVI MomifestoLeave a comment

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.

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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….

….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!

Hope has work for us to do

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

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

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

Wait and see and hope.

Wait

See

Hope

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

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

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

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

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

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

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

I didn’t.

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

I regret that silence.

I regret not sharing my story with that grandmother.

I regret not asking her for her story.

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

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

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

I have thought a lot about hope.

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

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

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

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

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

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

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

It endures.

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

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

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

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

Hope has work for us to do.

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

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

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

–– Jan Richardson, The Cure for Sorrow

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

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

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

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

CVI Teleconference Call

April 17, 2018April 17, 2018 CVI MomifestoLeave a comment

Did you know that there is a weekly teleconference call for families of children with CVI on Tuesday nights?

This weekly call has been a source of knowledge and comfort for families like ours. The moderator of this call is a kind and wise woman named Judith Millman.

I asked Judith about the history of this teleconference call that has been a lifeline to families across America for 11 years.

Why did the call come about?
The original idea for the Telephone Support Groups came from Dr. Alan Morse, the President of the Jewish Guild for the Blind (now LighthouseGuild). He felt that there were parents of children with visual impairment all over, particularly in rural parts of the country, who were isolated with no support systems in place and that the Guild had the resources and contacts to play a constructive role in their lives. About ten different vision conditions were targeted but CVI, being the single largest cause of children’s visual impairment became one of the first groups that was started (in 2007). It continues to be the largest telesupport group (by far) that LighthouseGuild sponsors.

How did you get involved? What is your background?
I am a social worker by training and worked most of my career in vision services. I started at the Lighthouse in Westchester Co. (White Plains, NY) as a social worker. By the end of my 30 year career there, I was the VP for the Lighthouse in the Hudson Valley, overseeing services for consumers in 7 counties. When I was about to retire, a colleague of mine, Dan Callahan, who was hired by the Guild to start the telesupport program, recruited me to facilitate the CVI group which was just about to be launched.

What are some common questions?
How can I get appropriate services for my child? The school district doesn’t seem to know much about CVI. Can you recommend an ophthalmologist who knows about CVI–mine doesn’t and told me that my child is blind. Where can I find a TVI and an O&M who really understand CVI? How can I help my child learn to use his/her vision? What strategies are helpful?

Have questions changed over the years?
I’m afraid that the questions haven’t really changed over the years. A positive factor is that more information is available via the literature, websites, distance learning courses, etc.

What are common themes in CVI that you don’t see going away – or that are increasing?
The tremendous role that parents have to take on to advocate for appropriate services–even more difficult in light of shortages in the field of TVIs and O&Ms.

What would you want parents of children with CVI to know?
You’re not alone.

CVI is the leading cause of visual impairment of children in the US. There are resources available, including a telesupport group, distance learning courses through Perkins School for the Blind, Dr. Roman’s book, webinars, etc.

If you are interested in joining the CVI teleconference call, email judithmillman@aol.com.

Thank you to Dr. Alan Morse for a wonderful way for families to create community across the miles.

Thank you Lighthouse Guild for sponsoring this call!