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?
Tuesday, July 13, 2010
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9 comments:
wow. that touched me so much.
I don't know how I am going to answer that one day either.
You did a beautiful job.
I got nothin', I'm sorry. but I'll be watching to see if anyone here gives you something good and store it for future reference.
My Carter is the same age as Elena & will be starting kindergarten this fall. I've been thinking a lot about this lately; Carter's never mentioned his CP to us, but I figure it's just a matter of time. I think you handled it beautifully, and I think you'll instinctively find the right words next time, and the times after that.
HI AMY MOM AND I WERE READING YOUR POST... THIS IS WHAT I HAVE TO OFFER.. FIRST IT'S GREAT THAT THE KIDS GAVE E THE TIME TO GET TO THE TOP INSTEAD OF PUSHING PAST HER..
I THINK ITS GREAT THAT SHE TOLD THEM BECAUSE I REALLY FEEL IF YOU TEACH THE KIDS ABOUT DISABILITES THEN THINGS ARE MORE LIKELY TO BE BETTER..
I HAVE A 6 YEAR OLD NIECE(6 ON SAT JULY 17) ABLEBODIED AND OFTEN TIMES SHE WILL SAY THAT I MOVE SLOWER BECAUSE I CAME OUT OF NANA'S(MY MOM) TUMMY TOO EARLY.. SHE WILL OFTEN HOLD OUT A HAND TO ME WHEN I AM GOING UP OR DOWN THE STAIRS UP OR DOWN A CURB...
SHE DOES ACCEPT THINGS AND I THINK ITS THE SAME WITH KIDS YOU DON'T KNOW IF THEY KNOW THAT THINGS ARE DIFFERNT FOR A REASON.. ALL ANYONE WANTS IS TO BE INCLUDED AND FOR THOSE WITH A DISABILITY THAT IS SOMETIMES VERY HARD BUT I THINK THESE KIDS STEPED UP TO THE PLATE TO INCLUDE E AND THATS AWESOME..
HOPE THIS HELPS YOU
MELISSA
I'm 43. I have mild spastic hemiplegia that, as an adult is only noticable when I am tired, but as a kid, I wish I had enough detail to say what the deal was to my peers myself- instead of feeling like there was this big nebulous 'something different'. Kids who can discuss this stuff the same way they talk about glasses and orthodontics will eventually just accept what 'is'
S
I'm right there with you in not knowing exactly what to say. But I really believe in always using the correct terms for things (e.g. body parts) over euphemisms. So I think using the term CP is a good idea.
Not only that, but until I had Peyton, I really didn't even know exactly WHAT CP was! So I think anything that can be done to improve awareness is great.
It's tough at this young age, but that may also be to Elena's advantage. Kids may not yet have become so cynical that they lump her into some "undesirable" group just because she is different. It seems that, the older kids get, anything that sets them apart from the crowd can be subject to ridicule.
If you are looking for ways for Elena to explain to other kids about her difference, here is just one example that might be good. Some people are really good at drawing or handwriting and can make a picture or letter look exactly the way they think it should look in their head. But some others have a hard time doing that. Elena's legs have a hard time making the movements that her brain wants them to make.
I think you handled this really well, just by going ahead and talking about it and not letting fear or embarrassment get in the way of the discussion. As Elena gets older, she will realize that all people have things in their lives that can make things more difficult. Some of these are easier to see than others.
Good luck. I'm glad that we live in an age where we can be on this journey together!
Amy,
I think you are doing a terrific job helping Elena cope with her disability. You are always having her try new things and are not afraid to get her involved in activities that others might think impossible. Plus, you are always telling her and showing her that she is capable of anything she puts her mind to. All those things are helping to build her confidence and self-esteem.
I do think that it is going to become important for Elena to have a way to explain to other kids in her own words why she might walk slower or need some assistance (i.e. use crutches) for times when you are not around to explain it for her. Helping her find the right words will help her to not feel uncomfortable when the situation arises. CP should not be a secret to her or others around her. She should be able to explain it with confidence when she needs to. Her comfort with the idea will make those around her more at ease (and less likely to put her in the mysterious "different" category).
Keep up the good work! I love reading your blog.
It brings tears to my eyes thinking about what I'm going to have to be telling my 2 1/2 year old soon about why she can't do what the other kids can do ... she has HSP but it presents the same as your Elana. I think you did great and you will do great again when the time comes.
I really like the beach walker you guys came up with ... an all-terrain walker. Very cool.
Great blog. Keep it up! Thanks for sharing. It really helps the rest of us.
Allen
I'm 15 and have mild left hemiparesis with some spasticity. I do have a slight limp and can't do minor things such as jumping on my left foot or skipping. I have been reading your blog for a few months now and love watching how much E enjoys life. I think it's great that E is accepting her disability at such a young age. I really wish someone would have told me and helped me understand why I was different. I didn't find out until I was in the 6th grade about my disability. For 12 years I thought I just couldn't lift my left foot up all the way. If E is beginning to understand and accept her disability at the age of 5 (well now 6) then she will be able to achieve anything she sets her mind to. Just remember that persistence is the key. She is truly an inspiration to me.
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