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 over...no 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.

It's Happening

I took off work early to take Elena to test out a new bike (more on that later). I insisted that we needed to be able to try it out in the store, or behind the store--b/c we had concerns (related to E's CP) that the bike might not be a good fit.

On the way to the store--in the f'ing car--E asks me, sincerely,

"Will I always have cerebral palsy?"

My eyes get REAL BIG.

"Is this something you want to talk about right now?"

"YES."

"I'd rather talk about this next to you, not in the front seat."

I'm thinking, please please please NOT NOW. Let me look at you and give you that look that I love you and things will be fine. But she kept on pressuring me. Look--I don't lie to Elena. When she asks if shots/surgery hurts, I say yes. Better to be honest so she believes me when the time is truly important.

I sighed. "Well Elena...the answer is yes. But you are learning more every day--"

"WHY CAN'T IT BE SOMETHING I HAVE FOR A LITTLE WHILE AND THEN GET BETTER?! WHY DO I HAVE TO HAVE IT ALL THE TIME?"

She is WAILING, Sobbing! I can barely drive the car. I'm thinking, I need to PULL OVER RIGHT NOW and help her get it together. But I don't know what to say. She is carrying on, I can't even understand her words, but she is seriously upset about this-and I'm pretty sure she doesn't quite understand the whole situation. I'm holding back tears, feeling like I'm unraveling, and thinking I have GOT TO PULL IT TOGETHER.

I get to a parking spot by the bike shop. E has calmed down some. It's super hot outside. I get her out of the seat, and hold her in the driver's seat with me.

"Elena, are you alright?"

"Yeah. It's hard sometimes."

My heart hurts. How do I do this???

"I will help you do whatever it is you want to do. This is just one little part of you, and I love the whole you--everyone does. I'm sorry if I upset you."

"It is upsetting--" she is talking so low and weak now, talking into my shirt.

"I'm sorry I upset you. I never want to make you sad," as I hug her tightly and hold her hair, "But I can't change this." GULP. BREATHE. "I can help you, and you learn new things every day. I love you always, in all ways. You do know that, right?"

"I know," as she buries her face in my chest. We stay there for a few seconds.

"How about that bike?" I ask.

"Well, I better wipe off this wet face then."

We both laugh. And pick up the pieces of ourselves, while shedding off a little of that everything-will-be-okay facade, that I think both of us harbor a little bit each day. Even though the weight is excruciating, and the reality of her disability "awakening" very raw--and real--now, I'd rather chip at her veil of normalcy than have it slapped in her face later. This year is going to be difficult sometimes. I just hope I say the right things.

And so It begins...

We went to the Bounce n' Play today. More about that later.

It was the exchange after dinner that really got me.

Elena was talking to Jason about our time there--she tends to really give detailed descriptions these days--and she recounted the event where she was climbing the slide ladder, with 5 (older) kids behind her.

"I heard Mommy tell them I had Cerebral Palsy. I know that's why I'm so slow."

And she kept on talking about the rest of our stay while I cringed. I didn't think she had heard me.

*sigh* Look. It's not a secret in our house that E has CP. But we don't say it often, either--and we certainly don't use it as an excuse. It's just one of those things *that is*, and we don't really harp on it.

As I was putting her to bed though, I brought it up.

"Elena, you know when I said that you had CP?"

She looked at me. "Yes."

"Well, that's true. But you can do anything."

She buried her face in her pillow. "But those kids said I was so slow...they all wanted to go in front of me." (None of them went in front of her, though.)

"Did you hear what they said after that?"

"No."

"They said that you did a great job."

She looked at me like I was lying. "When did they say that?"

I got closer to her.

"When you made it to the top."

E smiled, a big huge smile, as if she were emerging from some deep fog. And she hugged her buddy tight, and went to bed happy.

What do I say next time? What do I do when the scenario doesn't end well? This isn't going away. If anyone has advice, I'd sure like to hear it. I have a feeling this next year is going to be full of situations like this one.

How do you steel a five-year old for the harsh reality of living with a disability in an able-bodied world?

Busy Saturday Part I: Just For Kicks

There is a program called Just For Kicks, founded (?) by Tom Moran. "Coach Tom" is a very exceptional individual--he has an amazing passion for helping children, ALL children, regardless of disability, to enjoy movement, play, and sports. The sessions are free. We had the pleasure of attending a Just For Kicks session when E was 3, before her SDR operation. E was by far the youngest person at that session, and the one with the largest deficit in gross motor function. Over a year later, E still is (probably) the youngest, definitely the smallest, and still is the only child who cannot walk independently (very well, anyway). She was also the only person there with an obvious physical disability. Aside from Coach Tom, that is.

There were children of all different ages, most having some sort of behavioral issue. There were many facilitators at this meeting, most were UVA college students. It didn't matter how old you were, how well you could move, if you could talk, etc.--Coach Tom knew how to get all the kids motivated, for them to feel confident, and for them to feel comfortable, and for them to enjoy themselves. He also knew how to get them to listen. It's like he's MAGICAL, the kids just LOVE him!

Here are some of the activities the kids did (in case it gives others exercise ideas):
--circle time, introduction
--walking around, giving high-fives and telling everyone "You Are Awesome!"
--obstacle courses with sit-scooters, cones, jump ropes, color pads
--tic-tac-toe with beanbags
--beanbag games/concentration/balancing
--walk to a shape on the ground, uncover a card; bounce a ball as many times as there were pips on the card
--a variation of Twister involving the floor and the wall
--parachute games (cat and mouse: mouse hides under the parachute, everyone makes "waves" and a child walks on top of the parachute trying to find the mouse; sitting inside an "igloo"; playing "shark", where if your foot is tagged you have to go under the chute while everyone standing makes waves; "popcorn", where beanbags are placed on top of the parachute, and everyone has to make waves to "pop" them; color chase, where if Coach Tom says the color you're holding, you have to run under the parachute to the opposite side, etc. etc.)
--cup stacking

Here are some highlights with E:
Tom leading the Train before sending everyone To Stations (E can stop and use her hands while keeping her crutch on)



Twister Wall with Ms. Kara (not the best video, but you get the idea)



Cup Stacking with Ms. Kara (all activities are done in groups or in parallel, to encourage interaction). I liked the way E didn't stack cups like everyone else, she really explored different ways to do it.



Beanbag tossing with Ms. Julie



A Parachute Game




Coach Tom at the closing


You know how I know how important a program like this is? Because of what these 4-12 year old kids learned at the end of this 2-hour session. Everyone sat in a circle and said something they learned. Here are some of their lessons, from the kids' own mouths.

"I learned that being autistic means you can still make friends."
"I learned how to have fun with others that are not like me."
"I learned that it's okay to ask for help."
"I learned not to yell when it's not my turn."
"I learned there is a time to be patient, and a time to yell for fun."
"I learned to share."

And many more--I almost cried. Oh, and did I mention that this was also a kick-off for the Helping Hands program, where the facilitators make themselves available so that these kids can be in any community program, despite their disability, so they can enjoy that activity in a peer setting? YEAH. Amazing!