Sunday, July 22, 2012

Beach Vacation

We just got back from our beach vacation!  And what an amazing vacation it was--beautiful beach, very warm water, lots of family, wonderful weather--a well deserved break with the best kind of company.

(I have some great pictures, courtesy of my sister and Dad!)

The beach house was less than a block to the beach--too long for E to walk it without her crutches (not getting those sandy!), too short to drive (sometimes).  E used her beach walker some of the time, or got a piggyback or wagon ride.  The closest beach access point was not handicap accessible (more on that in a minute) so there were a lot of steps--Elena did most of them when she wore her beach shoes (but they got so full with sand they became a problem and we opted to carry).  

Once on the sand, E was more independent than ever.  A dream come true.  She did use her beach walker, but not much.  We did get a few questions from vacationers (one of them a pediatric OT!).  In general, Elena walked on the sand (with or without a hand) or crawled (if around tidepools).  I'll admit, her gait looked pretty bad, even painful at times.  But she was independent and she enjoyed herself, and she sure does need a break, so I let her do it her way a lot of the time.

Girls loved the tidepools!

The Beach Walker got left behind a lot this year
Viv and the lounge-a-gator
Making a pool is tiring

"Baby whales"

Since Vivian is older now, and E's mobility has improved, I wanted to try a few new things at the beach.  One of them was having E ride a wave...which at first, petrified me.  She can now right herself in a swim vest, swim independently in a swim vest, and even swim a few feet without one.  But I was worried about waves and the current.  I thought about it a lot, and decided with the right supervision, water depth, and gentle waves, we could do it.  

E on a skimboard

Skimboarding was one of Viv's favorite activities!

Skimboarding with Daddy
Elena loves to "Wave Jump".  I'm glad she likes it, but it is REALLY hard on my back.  


Viv jump on the way to another wave

And favorites--kids and I CATCHING A WAVE!


Elena and I wait for the right one





E cant' wait until the next one

 Out of the waves, we had all kinds of fun too...playing with family, including cousins from Ohio!

Pool Party!

Cousin catepillar

E and R playing chess

Sorry championship (insert pic)

And another personal favorite of mine...Bike riding!  ON THE BEACH!  I took the trail-a-bike down the handicap access ramp a few blocks from the beach house (it was still really close).  We just made it around the corners...the trail-a-bike is pretty long, and we need a large turning radius.  Elena was strapped in and I walked the bike in the parking lot, on the ramp, and in the deep dry sand.  I was was hard to keep the bike up in the slippery sand, but I did it.  It was worth it.

Sand Riders

And some of my favorite kids, both of them--walking--on the beach!


Sisters sitting in a W (verboten, but they did it anyway)

Walking Together

Elena on the beach

Huge thanks to my parents for making this beach trip possible!  I couldn't have handled the girls without help from Aunt Kate and Uncle Andy (and Ms. M), and it was wonderful to see the Ohio crew of MA and Hawk, and Matt and Alli and the kiddos!  Thanks always to FAS for making the trip from New Orleans--it is always great to see you!  THANK YOU!  

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.