‘diff’ability

Yesterday I taught Laelia how to say the word arthrogryposis. It was cute. She started out saying it ‘arf ra cry posisisis.’ I reassured her that she said it better than most medical professionals. :)

This came about after volunteering at her school during recess. The other kids always ask me questions about Laelia, then I turn to Laelia and ask her the same questions so she can be in control of what information gets out about herself.

“Why can’t she lift her arm?”

I turn to Laelia, “Laelia, why can’t you lift your arm?”

Laelia: “I do it like this!” She arches her back and twists a little to achieve more lift.

The little girl who asked the question still had questions. “Well why can’t you do it like me?” And Laelia just repeats herself but with a bit of attitude this time, “Um, like this.” She waves her arm around again. (Hello?) :)

I realized Laelia wouldn’t be able to explain why she did it differently because she didn’t know the name of her own condition. So I decided to practice it with her so she could answer more difficult questions. We practiced saying the word together that afternoon. Once she had it pretty much down I then decided to put this knowledge into practice. I asked Laelia, “Hey, why can’t you move your arms or legs like other children?” (Something I hated asking, but I’ve heard so many people ask this so many times that I wanted her to be prepared.)

Laelia’s response was, “I can!” And she threw her tummy around causing her arms to swing wildly and her legs to twitch. It made me laugh. Well that wasn’t going to work. I tried something else.

“Laelia, why can’t you walk like other kids?”

Laelia responds again with a huge show-off smile, “I walk like this!” Then she scooted several feet across the carpet on her bottom.

Well I was trying to teach her to respond with, “Because I have arthrogryposis,” or “arf ra cry posis” or something close. Instead my lesson was turned around on me as she taught me how to respond.

I think I use the word “disability” too much. I use it because people recognize it and what it implies. It’s just an easier (lazier) way to communicate with strangers. And whereas I’ve heard the terms “handicapable” and “diffability” I’ve never realized until yesterday why they are important. Because Laelia CAN move her arms and legs. And Laelia CAN walk. And Laelia CAN play like other children. She IS like other children. And her differences are explained by the word “arthrogryposis” and also at the same time not explained by it at all. Laelia is not summed up by the word, only her joints are.

So maybe when I print out the next business cards they will say “condition” instead of “disability.” And maybe when we introduce people to Lali we will say, “Laelia moves like this,” instead of “Laelia can’t move her arms or legs very much.” It’s important to be positive, because that’s what my daughter is. And when answering for herself she has decided to focus on what she CAN do. And she shows her friends how to do things in a different way, and often they try to imitate her!

For example, at recess there is a significant group of kids who surround us and practice drinking water from cups without using their hands. When they get a few swallows without spilling they show me how they can do it too! It’s a cool skill to have. :) (Sorry all you parents whose kids come home from school and try it with the glassware.)

And having a walker is also super cool. Laelia often has to admonish the boys and girls by saying, “Friends! Don’t touch my walker, friends! Come on friends!” It’s so cute. I asked if they would want someone to push them around or tie up their legs and I think they are starting to understand. But I see the longing in their eyes. A few of the braver among them either asked timidly for a ride in the walker or if I would buy one for them too! I’m the cool mom who bought the cool toy. :)

Also I’ve noticed there’s a difference between the people we meet for the first time and the friends we’ve had for a few years. The second group treat Lali like a kid. The second group take it in stride when it takes Lali a little longer to do something or get somewhere. People who know this kid know she’s a kid, and treat her like a kid.

So the biggest lesson I’ve learned lately on this crazy parenting journey is that arthrogryposis is a disability and Laelia… is not.

3 Responses to “‘diff’ability”

  1. Carolyn says:

    Oh my gosh, what an amazing story, and mostly because Laelia came up with such wonderful answers without anyone ever modeling it for her or telling her what to say! I LOVE that little girl, what an incredible spirit, and what great parents you guys are.

  2. Anonymous says:

    I agree “arthrogryposis is a disability and Laelia… is not. ” I watch her from a distance but she teaches me sooo much. I want to be like her, I would like my grandchildren to be like her. She has such a positive attitude and can teach us a lot. you are great parents and great encouragers. Laelia pronounces “arthrogryposis” a lot better than me. What a beautiful daughter you have–inside and outside.

  3. Melissa Rowe says:

    Like!

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