You know, she looks “normal”.

I saw K’s old early intervention preschool teacher’s aide (who is in her late 30s) outside of school today. We had a little chat while we were both stuck trying to get out of the parking lot. K and my other two daughters were in the car.

She asked how K was doing, and I said, “K’s sick – she puked today in school, but on a good note, she read OUT LOUD in class today from her favorite book because she’s “star of the week”.

She replied to me, “Oh, I’m sorry to hear that she’s sick. But that’s great about the reading. Oh, by the way, I saw K in the hallway last week with her little classmates looking at a little caterpillar that was on the floor and she was talking to her friends and you know what? She looked NORMAL”.

Uh, come again? You did NOT just say that within earshot of my daughter, did you? You work with kids who have special needs, not ABNORMAL kids.

But I didn’t say that. I might have, had I not had a run-in with her last year and I really wasn’t about to start another one.

Not missing a beat, I said to her, “K’s always been normal…(laugh) but she IS doing really great with speaking this year”.

***

When I look at special needs children, I don’t see abnormal children. I see children with different needs than you and me. And my children don’t see abnormal children. They see their friends.

We have a 16 year old nephew with cerebral palsy, that helped prepare all of us for the different challenges that having a disability gives a person. He’s 16 and still wheelchair bound (and yes, still drools a lot). But exposure to him and discussing what special needs means and what it does not has made my girls have a special heart for their special needs friends.

We don’t think of him as abnormal.

My oldest daughter often helps a set of twins with special needs, one of whom has CP and in a wheelchair and one of whom has other special needs and can walk with some difficulties. I’m grateful to say that she goes right up to them and plays with them, talks with them, and even helps them when they need something done (like when S’s shoe fell off, she put it back on him and tied it for him). They seem to appreciate the kindnesses my daughter gives them.

We don’t think of them as abnormal.

My K had selective mutism for 2 years. I never once considered her abnormal. In fact, I have always considered her highly bright (and proved to have a second grade reading level during the first assessment of school) but with a special need.

Selective mutism isn’t an disease, or a disorder (not a permanent one anyway), I believe (as her neuropsychologist explained) it’s simply a neurodevelopmental delay or better yet, a limbic mood dysregulation. Give the child proper tools and support, and s/he will “outgrow” the selective mutism and flourish. I did, and she has. 2 years ago, I never thought I’d see her read a book out loud, in front of her classmates. But today she did. I am so proud of her.

I’m not angry at the teacher’s aide, only saddened by the fact that she categorizes children in her charge as normal/abnormal and she ought to know better.

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4 Responses to You know, she looks “normal”.

  1. J-viere says:

    Wow. Hmm.
    She’ll learn. You never know — maybe she’s going to spend the next few days agonizing over her choice of words, trying to figure out some way to make up for it?
    I think you handled it in the very best way.

  2. raisingsmartgirls says:

    I’m really not expecting it. And honestly, I don’t think she meant harm by saying it, but really, I know when I say things that are potentially impolite, I try to scramble and say, “well, I mean to say…”.

    I am hoping that maybe she’ll think twice before saying it again.

    I think some people just don’t think what they say could actually, you know, insult someone or worse, affect a child’s self-esteem.

    Well…at least we don’t have to deal with her much anymore, except on a very occasional basis.

  3. J-viere says:

    I get asked all the time how “severe” C’s Down syndrome is. When she was first born, everyone wanted to know how mentally delayed she would be. No way to know… just like with any child, I told them.
    Often when I tell people she has it, they say, “Oh, well she must not have it very bad then.” I take that chance to explain, as best I can within about a half a minute, the whole concept of you either have it or you don’t. Like, you can’t have a “little Down syndrome.” There is either trisomy or there isn’t. But it’s called a syndrome because it just means collection of symptoms really. And if they’re still listening (and usually they still are!!), I might even go into the three different types and how, yes, some are actually less “severe.” But I ALWAYS add that no matter what type, or how many symptoms manifest, they are still cognizant people who walk and talk and hear and learn and laugh and love. (and dance!!!)

    Someone even asked me the other day if I knew how she got it. “It’s a genetic thing,” I said. This confused them so I ended up standing there giving a lesson in genetics. I think people want to know, or at least don’t mind being corrected if they are wrong. The trick is just finding the right way to do it so they don’t end up feeling stupid or embarrassed. Heck, before I had C, I didn’t know all there was to know about Down syndrome. In fact, I knew astonishingly little. Now I put forth the effort to make people aware that people with DS are more alike than different (Nation DS society slogan). But what astonishes me the very most is that the majority of people I talk to (I mean really like 8 out of 10) have a cousin, aunt, sister, nephew, you name it, with Down syndrome.

    Anyway, I know it wasn’t totally related, but maybe it was. Some people say things without thinking it might be hurtful, yes. It’s just because they aren’t dealing with what you’re dealing with, so they aren’t sensitive to it. Unfortunately, sometimes it takes screwing up to really learn what not to say. Honestly, I am still learning too.

    Thanks for reading my PSA on DS! lol!

  4. raisingsmartgirls says:

    J-viere –

    Thank you for sharing your story. It didn’t have to be “related” to mine for me to appreciate your perspective.

    I think, in a lot of cases, unless you have a child with a special need (of any kind), you don’t really think what it’s like to be on the receiving end of “well-intentioned-but-awkward” statements. I don’t think the teacher’s aide meant harm, but she certainly didn’t think about how that statement sounded either. I hope she got the distinction.

    Even knowing the genetics behind many diseases/syndromes/disorders, I don’t really know what it’s like to walk in another mom’s shoes when dealing with some aspects of things.

    Tonight husband and I are going to a dinner/dance to raise money for a new program that will serve special needs young adults/adults in my nephew’s town. We are excited to be able to help out in a small way.

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