Bad Mama


Letter
September 3, 2007, 6:32 pm
Filed under: Disability, Parenting, Peanut

Does this sound ok?

Hello Everyone,

We are Bad Mama and Big Daddy, and we are the parents of Peanut, a new student in X. I would like to introduce you to her, because she has some differences from the other children. We wanted to give you some answers to the questions you will probably get from your children about her.

Peanut was born with a condition called Arthrogryposis Multiplex Congenita (AMC). She uses a walker and wears braces on her legs. Somewhere, early on in Bad Mama’s pregnancy with her, she stopped moving around for reasons unknown. This resulted in several of her joints having very little or no flexibility, and her muscles did not develop properly. She is small for her age, and is not as strong as other kids. She has had multiple surgeries and several years of therapies that have allowed her to become much more mobile, but she still has a long way to go before she has the kind of independence she should.

Peanut has been using her walker for a little less than one year, and is still adjusting to the interest that people, particularly adults, show in her when she is in it. Even though the attention she has received has been positive, she recognizes that people stop to look at her because she is different, and it makes her very uncomfortable. She would appreciate it very much if grown-ups just pretended the walker wasn’t there and that she looked like all the other kids.*

We know it is going to be a little different with children, and we do not wish to discourage questions. We have explained to other kids that she needs her walker and braces to help her walk just like some people need glasses to help them see. And just like glasses, her walker is not a toy to play with, even when she is not using it. After Peanut gets comfortable with another child, she is usually happy to let that child explore her walker, and she loves to show off her blue braces. Part of what we want her to learn at X is to handle questions about her disability from other children.

Our daughter is far more like other kids her age than she is different. She loves music and dinosaurs and playing house, and hates hot foods and vegetables. She is both very nervous and excited about starting school for the first time, just like most of the other kids. Our family is looking forward to the school year and getting to know everyone else. Thank you for taking the time to read this letter, and we hope it was helpful. We are available to answer other questions as the need may arise.

Sincerely,

The Bad Mama Family

*Edited to add: I just want to make clear that the sentence about “pretending it’s not there” came directly from Peanut. I asked her what she wanted people to know, and that was part of the discussion. I don’t actually agree with it either, but she is really bothered by the way people stop to look at her. I can see how that might not be clear here, so I’ll edit it.

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6 Comments so far
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hi there.

i think it is a nice letter, generally.

2 little things, though: i would move the “peanut is more like other kids than she is different” to near the beginning of the letter because i think that puts the emphasis in the right place. also, i am a little uncomfortable with your asking people to “pretend the walker isn’t there”. i agree that you should direct adults to de-emphasize the walker, not stare, hold off on discussing it with peanut until they know her well, treat her as they do other children, or however you prefer to phrase it. however, as an adult with a disability, i feel that instructing others to “pretend” about disability or completely ignore it can be counterproductive. it can telegraph that a disability is shameful (although i understand that is not the reason you make the request here) or just cause people to not validate a person with a disability’s reality & solve problems effectively if issues come up.

congratulations on pistachio and on peanut heading for school.

bolo

Comment by bolo

I like Bolo’s comments. It reads fine, but if you want tweaks:

I’d take the statement of difference out of the first paragraph, and start like this:

“We are Bad Mama and Big Daddy, and we would like to introduce our daughter, Peanut. We anticipate that you will probably get questions from the other children about her. We think kids’ questions are fine, and we’d like to provide some accurate answers for you to use.”

Probably don’t need the sentence about pregnancy–since the reasons really are “unknown,” it doesn’t clarify much, and might confuse the teachers. They may misremember that there was a significant event during pregnancy.

I think the glasses analogy is an excellent one to give the teachers to use with children, and it will easily extend to any other supports the other children may use. When someone’s wearing glasses, we don’t have to pretend they aren’t there to be polite–we count them as part of a person’s appearance, we take care to avoid damaging them, and sometimes we even admire their beauty and function. It can be the same for Peanut’s walker, I hope.

Comment by Penny

I agree with all of that. How exciting that she’s going to school!

Comment by Pronoia

I do like the analogy with the glasses, it is something that every child can understand and accept it as something that helps. I think this will be a learning experience for Peanut and every other child in her class.

Comment by Jen

Being a teacher myself, I think this is a great letter. It is very informative and will help him/her tremendously. I would also suggest setting up a conference incase there are any questions.

Comment by NaeNae

It sounds perfect and I LOVE how you let Peanut help with the wording!

Comment by Camry Jayne




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