The Letter I Had to Write

I debated whether to even publish this, because recently there’s been some flap in the disability community about whether parents should write/publish about their children with disabilities, or whether it’s an infringement on the child’s privacy. And certainly, that is something I take into account—particularly as my kids get older. Theo’s at an age where there is a lot—both positive and not-so-positive—that I don’t put out for public consumption because I feel he deserves privacy. But every so often, something strikes me as something that ought to be said and that probably won’t be anything that would bother him to read later. And this is one such post.

As a bit of background, we had Theo’s triennial IEP meeting in May. That’s the big, every-three-years meeting where they redo all of his assessments and we talk for a couple of hours. I didn’t realize it was that meeting, and so I was a bit unprepared for all of the information they threw at us. My bad. I was dealing with trying to fight a legal battle for Sam’s schooling at the time, so I was a bit distracted. 😉

Anyway, most of it was straightforward and reasonable, and we agreed with it. But there was one piece that just kept nagging at me, and it’s been nagging at me all summer. They wanted Theo to do a speech evaluation and receive pragmatic speech therapy. At first I laughed out loud, because speech is definitely Theo’s extreme strength—he scores nearly off the charts on language abilities. Don’t get me wrong—he has areas where he struggles, like any kid. I’m not saying he’s a super genius or something. But his struggles are most definitely not in speech.

But his speech is not typical for a child of his age. Rather, it’s like an adult’s, and so the other children don’t always relate very well to him. The school is concerned about him getting ostracized because of it, and I do understand their concern—I have seen kids turn away from him before when they can’t follow what he’s saying or whatnot.

But still, something about it just didn’t feel right. And so last week, I finally made the decision to reverse that part of his IEP. I sat down tonight and wrote a draft of the letter I plan to send to this principal and the IEP team. It pretty much explains what I need to say about the subject, so I’ll let it speak for itself. And Theo, if you read this someday, please remember that your mama went to bat for you and said, “No, my kid is fine the way he is. We think he’s awesome. You should talk to him and realize he’s awesome, too.” 🙂

Dear members of the IEP team,

At my son Theo’s IEP meeting back in May, we discussed a number of things. One was that in the fall, he would have a speech evaluation and would then start receiving some speech therapy to help develop his pragmatic speech skills—my understanding of this was that it is designed to help him better communicate with his peers.

I’ve been thinking about this particular piece of the IEP all summer, and it has been bothering me. I’ve decided I’d like to remove that part of his IEP and cancel the speech evaluation and therapy. I am happy with the rest of the IEP as it stands; it’s only that one piece that has been bothering me and that I’d like to change.

I suppose that’s probably all I really need to say, but I’d like to explain my reasoning, so you know where I’m coming from. First, let me say that I do understand the idea behind it—I’m well aware that Theo doesn’t talk like an average second-grader. I’ve been with him at the park and seen how kids sometimes look at him when he speaks like a 50-year-old man instead of a 7-year-old boy, and it breaks my heart a little bit each time I see it. And Theo’s first-grade teacher had brought it up to us, too, and suggested we try to work a little “street talk” into his vocabulary. Unfortunately, my knowledge of second-grade street talk is circa the early 1980s, so I’m not sure that would improve things very much!

But in all seriousness, what bothers me is that if we were to go ahead with this piece of the IEP, the message that I think it sends Theo is that the way he currently speaks isn’t okay…and sending that message really bothers me. First of all, because I think the way he speaks is okay—it’s different, that’s true, but I don’t think that’s necessarily a negative. (Actually, I find it pretty charming, as do most adults who meet him! I know other kids don’t quite get it, but adults generally think he’s quite a lot of fun to talk to.)

And second, I feel like Theo spends enough time hearing that things he does aren’t okay, and I don’t want to add one more to the list! For example, he struggles a lot with anxiety, and we’re constantly encouraging him to relax, take a deep breath, realize that something he’s upset about isn’t a big problem, and so on…and the underlying message there is, “The way you’re naturally reacting isn’t okay; you need to react more calmly.” No matter how kindly or constructively we put it, that’s the underlying message. And similarly, he struggles with getting easily frustrated, so we’re constantly working with him on trying to use coping skills instead of getting frustrated…and again, no matter how constructively we word that, the underlying message is, “Your natural reaction isn’t okay; you need to try to react differently.”

So to me, trying to teach him another way to speak falls along these same lines—no matter how reasonable the goal or how we go about it, there’s still a message of, “The natural way you speak isn’t okay; you need to try to do it differently.” And I just don’t want to pile one more thing like that on him. He’s got enough to work on already.

I don’t feel like we need to call another IEP meeting over this or anything like that—I’m happy to just sign whatever paper I need to sign saying that we’ve revised the IEP to remove the speech evaluation/therapy piece of it. And I hope you’ll know that I respect your opinions as people who work with Theo and other children—I just have to go with my gut as his mother on this one. It certainly wasn’t done without a lot of thought—I mulled it over all summer.

I think you’ve all talked to Theo before, but if you haven’t, you should—he’s hilarious. I guarantee he’ll have you laughing within minutes!

Hope you’ve all had an excellent summer, and I look forward to working with you this year!


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