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Beaten Down

Posted Mar 03 2010 12:00am

After today's session with Finn's new "infant stim" therapist, I've decided to can her. As I posted last week, she was a half hour late the first time she came. I emphasized to her that I have to be out of the house by 12:20 to pick my twins up from kindergarten. Apparently 11:30 on Wednesdays is the only time slot she has available. Fine. If that's the case, then she really needs to be on time if we're going to get anything close to an hour of therapy in, which is what she's contracted for. Well, she was late again today, and this time didn't even bother acknowledging or apologizing for being late. Also, I'm not at all impressed with what she appears to have to offer. She plays with toys on the floor with Finn. Period. We do that already. Emily, the OT, does that. It's overkill. She's not wowing me. So we're done with her; I've already contacted our SC and told her to let her know that she doesn't need to come back. And in all honesty, if this is what "infant stim" is all about, I'll cheerfully do without a replacement.

After the infant stim therapist was here (and I rushed out to get my girls from school), I called Emily, our OT, to get her input. I can call her like that, whenever, to blow off steam and to get her input on therapy, because we have a rapport outside of therapy. We're in the same book club. She's a fellow mom in the neighborhood. Her kids go to the same school my kids go to. We have friends in common. So I called her because I wanted to get her input on canning the infant stim therapist and pushing for speech therapy for Finn. We've thus far been denied ST because here in California, Finn is deemed too young to qualify for one-on-one ST. So Emily was telling me how she began as a therapist in Chicago, and how different EI is there and in other parts of the country, and how in most areas, kids with Ds get ST from birth.

During the course of the conversation, in describing her frustration with how the EI system in California is set up (and I agree, it's screwy), she did the unthinkable: she used the R-word. To me. Today, of all days, the day we're Spreadin' the Word to End the Word. For crying out loud. And she used the word to describe the EI system! Can it get any more ironic than this, folks?

You know what? I kind of lost it after I got off the phone with her. I didn't say anything to her because I was just so stunned. But when I hung up the phone I started crying and shaking - a full on meltdown. Kevin, my 13-year-old, was worried when he found me crying at the kitchen table. "What's wrong, Mom? What's wrong? What happened?" So I told him - this smart, sensitive, compassionate kid who thinks the world of his baby brother, and who is on his own crusade to change people's attitudes - I told him that someone used the R-word in conversation to me and that it just really, really hurts.

I know this sounds rather melodramatic. But it felt like the straw that broke the camel's back. Why am I fighting such a clearly losing battle? It's no use. These words, and these attitudes, they're everywhere. We can't get away from them. It hurts so much, people. I felt just completely drained and defeated.

I like Emily a lot! She's great at what she does, Finn is responding really well to her, she's wonderful. And I know she didn't mean any harm, I know she didn't. She's not a bad person, she's a really kind, wonderful person. But see, even she - a person who makes her living at working with developmentally disabled children - throws that word around without even thinking about it. How are we ever going to change something so insidious?

You know that speech that Kevin wrote? He's going to be giving it in front of the student body and their families at his school this Friday evening. I guess some kids have gotten wind of the subject matter of his speech. Want to know what one kid in one of Kev's classes said to him a few days ago? He said, "Hey, I hear you wrote a speech about a retard." Punk-ass kid . . . why I'd like to . . .

Ugh. Ugh. Ugh. Somebody get me a hole to crawl into.

All that said, I only let a few minutes go by before I knew I had to call Emily out on this. Of course it would have been easier to just let it go, ignore it, pretend I didn't hear it, pretend she didn't say it. But I couldn't. So I sent her this:

Hi Emily -

I want to tell you again how much I appreciate your help and input. I'm so glad that we have you on our team now.

I have to say something, and this is really uncomfortable. On the phone today, when you were talking about how the EI system is set up in California, you said, "That's just RETARDED." Ugh. That word hurts. I'm thinking you probably didn't even realize you said it. But see, that's the problem, it's become so insidious in our language that people don't even realize they're saying it, and they have no idea the people it hurts. Finn is developmentally disabled, and he will be for his whole life. So this is HUGE to me, a really, really big deal. It hurts me, as his mama, when people talk like that. And despite the fact that it's really difficult and uncomfortable to call people out on it, I owe it to Finn to try to change attitudes.

I just wanted to put that out there. No hard feelings. I adore you and am so happy with everything you're doing with Finn.

Lisa

Oh, and here's something my oldest son, Kevin did (he's actually going to be giving this speech at Beechwood school this Friday evening): http://www.youtube.com/watch?v=33IxIdS1vYk

And she did respond and was very apologetic, which I appreciate. It's not apologies I'm after though. It's a change in attitude. And I guess the best I can hope for is that when called out on it, people will at least think before they speak in the future.
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