When I got home from work today, there were a bunch of library books on the table, including this one, Ballerina Dreams. Life is so strange sometimes; remember a few weeks back I did a Q&A with a pediatric physical therapist who runs a dance program for kids with disabilities? Well, this is the book about her program. Sabrina had, coincidentally, found the book at the library when she was there with our babysitter, and decided to take it home.
I was so excited. We have yet to have a conversation about why Max is the way he is, and I thought this could be a good opportunity.
Max wasn't very interested in the book; he wanted to push a little toy caboose around the bed. So I started reading to Sabrina, and got to a photo of a little girl with braces on her legs.
Me: "See her feet? She has braces, to help her walk and dance. Max has braces, right?"
Sabrina: "I don't like braces."
Me: "Why not?"
Sabrina: "I just like to do ballet dancing. I think I want to do ballet again!"
[Background: Sabrina took ballet classes all of last year, then did nothing at the recital except stand onstage and peer serenely into the audience. The only time, and I mean the only time, she moved her feet was when she stepped forward at the end of the show to take a bow. Sabrina got the biggest round of applause of any kid.]
We continued, and I pointed out a shot of an assistant holding up a little girl.
Me: "See? This little girl is getting help standing up."
Sabrina: "Why does she need help?"
Me: "She has cerebral palsy."
Sabrina: "What is cepeeebral lobsy?"
Me: "It means that your brain got a boo-boo at birth and that your muscles don't work so well. Max has cerebral palsy."
Sabrina: "Oh."
And that was that. The book was just beautiful, as were all the little girls in it. At the end, Joann, the dynamo who runs the program, comes out and hands each girl a red rose. Here's the text:
"I am so proud of you all!" she says. Everyone has tears in their eyes. But they are not tears of sadness. They are tears of joy. The girls dreamed of being ballerinas, and they have made their dream come true.
I totally choked up. I felt like bawling, actually, but I got it together and finished the book.
Clearly, at 4, Sabrina is not quite ready to talk about Max. We will have that conversation, and many of them, in due time. For now, to her, Max is just the brother she loves.
What a beautiful story. It speaks to the fear that we all have - finding a way to *explain* to our children why they are different. At least the fear that I have. I dread it, actually. I can't even bear to picture Gavin asking me, "Mommy, why am I different?" Ugh!! I get tearful just thinking about it. I have two boys, so I don't think the Ballerina book will cut it...but a book IS a great idea when the time is right.
ReplyDeletekate.
www.caringbridge.org/visit/gavinleong
ps...the real question of the night? When my newborn, Brian, gets older and has a bedtime...do you think I'll wait up for your midnight postings? ;-)
I'll say it again... Children have no preconceptions of people... WE educate them, in ways of good or bad...
ReplyDeleteWhen I first told my class about Cole, I got some of the same questions. What's Cereb'zalllle palzzzy? "Cole's brain was injured when he was borne"... His brain dose not always tell his muscles what to do... ect, ect... I tried to explain as simple as I could.
The biggest question was how does he do karate if he can't walk.. Well thats because his sensei modified special moves just for him, because sensei's can do that. ;-)
As kids get older, they will understand more then you give them credit... Tell them the truth, they will understand...
That's a very nice way to describe Max's condition: Very matter-of-fact and without valuation.
ReplyDeleteJust yesterday I was searching online for books about kids with special needs for their siblings. I found a couple, but most of them weren't for little kids. I'm not sure my son would relate to the ballet story though...
ReplyDeleteIt has been VERY hard for me to try to gauge what my older son is ready to hear. We always tell the truth though.
I know that he is especially proud of the baby's hearing aids though. I know some of his other friends wonder why "their babies" don't have hearing aids! Very cute!
What a great book! I have had many questions from strangers or nieces and nephews...but nothing yet from my own children(of course both have different types of special needs).
ReplyDeleteI'll have to get that book for V. E's issues aren't obvious to her. To her, he's just a big pain in the butt! But she loves ballet, so maybe this book will resonate with her.
ReplyDeleteAlso? You daughter's dance recital story made me laugh out loud! Thanks again for the book recommendation.
Beautiful! I've been wanting to order that book to have for the future!
ReplyDeleteSabrina sounds just adorable!
When they're young, they just don't want to take on anything that's too heavy or negative. They like that safe and worry free feeling, and who can blame them? Your little girl knows that "something is up" with her brother, and that's probably been nagging at the back of her mind for as long as she's been able to notice differences. The "basic explanation" always helps to create a sense of order for the little ones. You did a great job of explaining what's up with Max in a simple and matter of fact way.
ReplyDeleteWhen she's a little older, she'll learn how to deck anyone who is mean to her brother! My advice: stomp on the instep first, then go for the 'nads! Works every time!
Very beautiful story Ellen. Yesterday my aunt asked me how Emily is handling everything with Jude. I explained that to Emily he is just Jude. She doesn't know what it's like to have a "normal" baby brother so this is all she has to compare too. To her she just accepts and loves Jude for exactly who he is and that will never change. I love that.
ReplyDeleteI think that if we're open and honest with our kids right from the beginning, from before they can even really understand, they just get it and it becomes something they've always known.
ReplyDeleteThe picture of Max & Sabrina is so sweet. What great smiles!
That's beautiful! I love how innocent young children are. It takes them a long time before they even begin to notice differences as being "different." if that makes any sense :)
ReplyDelete~Marianne
That is so beautiful.
ReplyDeleteMy kids take things in slowly and they are alot older.
I think that you are doing a great job with Sabrina-- feeding it to her in bits and pieces using concepts that she can understand, but not pushing it on her when she just wants to talk about ballet. :)
ReplyDeleteAnd now, of course, I have to find this book. We'll add it to our collection of books about special needs children. Thanks for the recommendation!
~Jess
sounds like I need to get my hands on that book!
ReplyDeleteLove this post! I have to agree 100% here with Rich. 'Children have no preconceptions of people... WE educate them...' That is the beauty of children, and the beauty of your daughter... Max is just her big brother. I love it!
ReplyDeleteAwesome. I am going to buy this book.
ReplyDeleteThanks for sharing your lovely story!
that sounds like a wonderful book, but the pic of your kids together is even more wonderful!
ReplyDeleteJust found this post - I was a dancer with Joann for four years and loved every minute of it. She is a wonderful person and I miss the program so much. <3
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