Saturday, July 7, 2012

Elena's Disability Awakening

This post has been a long time coming.  I'm not even sure how to tackle it, so, here goes...

I know I've mentioned that the fact that Elena has cerebral palsy is not a secret.  She knows her diagnosis,  and she knows she is different.  We don't mention cerebral palsy or CP a lot, mostly because E is a smart girl, and I don't want her to start using it as an excuse.  I don't explain her disability to others often, because I expect her to do it, in her own words (whatever words she wishes to use).  Sometimes she does, and other times she tires of looks and stares and goes about her business.

Some things have changed, though.  Before summer break, Elena's adaptive P.E. school aide mentioned to me several times that I needed to have "the talk" with E regarding her disability.  I didn't understand this, b/c the fact that E has CP is not a secret among us, nor does she seem overly upset about it.  It just so happens that Elena does not like her time with the P.E. aide--for several good reasons, none of them being that M. is not kind or considerate or knowledgeable.  So M. saw a different side of Elena, and assumed (correctly) that it was related to the fact that E has CP.  M. gave me lots of really fantastic books, listed here--and E has read some of them.  She didn't feel like talking much afterwards; she felt like playing, so that was the end of it.

I got a video from our wonderful Coach Tom; I haven't found the right time to share it with Elena.  E's seen a few youtube videos of other kids with CP, but not many.  One type of video that does resound well is the commercials for the 2012 Olympics in London; here they show the Olympians and Paralympians and it is wonderfully fascinating.  E and Vivian LOVE the Olympic trials, and I really hope that we get some coverage of the Paralympics.  It fits so beautifully well with what we always tell Elena:  There is always more than one way to do something.  Sports are no exception, and that really resonates with her and she seems more proud than upset at her athletic attempts.

One phrase we get A LOT of these days is "why did that happen?", regarding a fall, or a trip, or an unexpected slide.  At first I thought this was a complaint, a "why does this always happen to me" type of whine, where she is just waiting for me to blame it on CP so it gives her permission to do so.  Our PT suggested (after a particularly trying session) that Elena is curious about the way her body moves, and we should answer as such (within an understandable vocabulary).  So, now when E says "why did I fall?" we try to tell her that while it is true that certain activities are more difficult (stopping, stairs, carrying), it just means that she needs to really be attentive and try to focus on being slow, being safe, making a good choice (going around legos on the floor instead of plowing through them and falling on them, etc.).  We are trying to build some accountability for her falls, while at the same time, understanding that she's a KID--and most kids don't have to think that hard about how they are going to move.

Exposing Elena to others like her, from an early age, I believe has helped immensely.  The Holiday Card Exchange, with the pictures and stories, was wonderful.  To Danielle, Earl, Oia, and others, the (birthday) cards were fantastic.  Danielle, E listened very intently when I read her your letter--thank you SO MUCH.  Having a friend with a disability really struck a chord with Elena, in a great way.

So, in essence, we haven't had The Talk.  But we regularly celebrate differences, offer encouragement and support, and mention how much we love our family and friends, and try to keep an open dialogue--be it about feelings, aspirations, frustrations, or silly ideas.  Vivian is a typical younger sister, in that she tries to emulate Elena--whether it be using her crutches (and falling badly while trying), or wanting to use her chair, or stander, or want to be involved in therapy.  It's a typical family dynamic--and that's a celebration in my book.

I've always felt like that sentiment "well, I love (so-and-so) and I wouldn't want to change them for the world" was garbage.  Seriously.  I mean, if I could magically take away E's disability, would I?  OF COURSE I WOULD.  But if that involved changing who Elena is...starting way.  She's an incredible person, a wonderfully engaging girl, a real gem of an individual--the way we feel about all our children (as we should).  I hope that Elena realizes this.  Maybe not now, maybe not next year, but some day, I know she will celebrate her differences and know that her individuality--though sometimes hard to bear--is one facet of the brilliant diamond of herself.


Danielle said...

Hi Amy,

Great post. Thanks for the shout out. I'm SO GLAD it meant something to you, and to Elena. :)

Anonymous said...

Hello Amy and Elena,
My name is Steph I am seventeeen years old and too have cerebral palsy I am so glad I came across your family blog site I have always whanted to know that there are other people out there like me, and when I read your storys about elena I feel like I can relate to Elena.

Kristy and Brian said...

great post, keep em coming :)

Anonymous said...

I Amy and Elena,
It is Steph again
I just thought I would let you know of a new technology that is out there for walking instead of afos i got to try it today and i did not fall, i even ran for the first time. here is the website if anyone is interested the place that i have gotten mine from is hanger prosthetic and orthotics they own part of the walk aid system.
here is the link:

Anonymous said...

It's too late for live streaming, but I wanted to make sure that you know of the IPC's YouTube channel ParalympicSportTV. I'm nearly 30 and have waited for coverage of the Paralympics for as long as I can remember. I'm not sure it will ever happen on TV :( but at least now there is YouTube.