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.

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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 rooms the 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 holiday appropriate!

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

Nicola McDowell’s CVI Journey

Hello fellow families of beautiful children who happen to have a diagnosis of cortical visual impairment!

I had the great joy to attend the Early Connections Conference at Perkins School for the Blind yesterday.

There will be posts to follow.

In the meantime, I wanted to be sure to mention a recommendation that the CVI Teacher, Ellen Mazel, gave during a presentation about complexity.  She recommended that people interested in learning about what it is like to live with CVI watch a YouTube video posted by an adult with CVI, Nicola McDowell.

Parents, we need to watch this video.  We are on the frontlines of educating the medical and education communities.

This is a video you can easily send to your pediatrician and your school team with the information that CVI is the #1 pediatric visual impairment in the U.S. and the first world countries.

https://www.bing.com/videos/search?q=nicola+mcdowell&qft=+filterui%3amsite-youtube.com&view=detail&mid=69BB6512FDFB3ECEAF0569BB6512FDFB3ECEAF05&&FORM=VRDGAR

Nicola McDowell has done all of our families a great service in describing the anxiety in her life caused by cortical visual impairment.  I was fascinated by her description of what she sees, and how she has to strategize future social occasions to avoid becoming overwhelmed.

Nicola’s story helps me better understand my daughter’s experience.  Her information is invaluable.

Check it out!