Wednesday, March 11, 2009

Support

I occasionally attend a support group for parents of children with special needs. I was excited to find out about it, and even though it’s held on weekday mornings, my schedule sometimes allows it. I’ve met some very nice people, including the coordinator, a gentle soul I was drawn to the minute I met her, a woman who gives out her cell phone number so you can call her in the middle of the night about an IEP if you need to. They are a wealth of information and experience. Their kids are all older than mine. Many of their children have multiple disabilities and are autistic on top of that, a fact that humbles me. They treat me, the newcomer, with kid gloves. Your son was just diagnosed, they tell me. You’ll never be as vulnerable as you are right now. It will never be this hard again. It will still be hard, but it will be different.

And every time I go, I question whether or not I should go back.

The group is different every time, so we start with introductions. My son, Secondo, is three, I tell the group at the most recent meeting. He’s autistic, and he’s in the special-ed preschool class. His teacher is wonderful, and he’s made a lot of progress. She just told us we need to rewrite his IEP, because he’s mastered most of the goals in his current IEP.

I tell the group this, and it’s not like I’m expecting a fucking cookie, as my roommate used to say. But I am definitely not expecting the response I get, which is this:

Laughter. Followed by: “Well, enjoy it now, because that’s never going to happen again.” A couple of snorts. Taken aback, I look at the coordinator, who says, “You do know that this won’t happen again.” I don’t know if it’s a statement or a question. Her tone is gentle, her expression is compassionate, but she is speaking as if she needs to disabuse me, the Pollyanna in their midst, of the notion that my son’s progress in preschool means that life will be nothing but rainbows and fairy dust from now on.

“Oh, sure,” I laugh, because now I am on the spot, and I have to laugh it off. But I am hurt, really hurt. We move on to the next introduction.

The thing is, I know. No one has to tell me. I know things get hard, really hard. I know that parents hire advocates because they feel the system is failing their children and have knock-down, drag-out fights at IEP meetings. I think about junior high and about kids being cruel to my boy, and it terrifies me. I know Secondo will be autistic for the rest of his life, and I don't know what his future holds. I know that Secondo’s special-ed preschool class is a special little bubble, one in which in many ways, I don’t have to face reality. In this bubble I can concentrate on the good, and only on the good, if I so desire. I know. I know one of the reasons he’s mastered his goals is because they were so basic to begin with, and that things will become much more challenging. But I’d rather just be happy that he’s mastered these goals. Because if I really think hard about the fact that one of the original goals was to get him to respond to his name, it makes me want to cry.

But you know what? No matter how basic those goals were, I normally do find it easy to feel optimistic about things. Because the fact of the matter is, Secondo wasn’t responding to his name a few months ago. (Before he was evaluated, but after we’d shared our concerns with P’s parents, they came to visit and my father-in-law spent a great deal the visit yelling, “Secondo!!” and clapping his hands in Secondo’s face to get him to respond. I can’t even describe how stressed out I was, or the despair I felt right then.)

But he’s come a long, long way since then, and I’m prouder of him than I can say.

So, let me try my introduction again, here, on my blog. My son is three, his name is Secondo, and he’s autistic. He’s in a special-ed preschool class, and he’s doing great. His teacher suggested we rewrite his IEP soon, because he’s mastered most of his goals. They were basic goals, but they were things I couldn’t even imagine him doing only a few months ago.

Isn’t that awesome?

[And hey, if you want to leave a comment, at least you know what not to say.]

6 comments:

Snickollet said...

Aw, Keen.

It might happen again. And in any case, you should be proud of your Secondo and what he's accomplished. Live in the moment, right?

I wish I could give you and Secondo both some fucking cookies. You deserve them.

Christine said...

Oy.

I run into this from time to time -- from both professionals and moms of kids who are older than mine. It's like they think it is there job to make sure I know all the hard truths. But really, their truths are usually much, much different from mine.

Sounds like Secondo is doing wonderfully. Congratulations, mama!!

Tricia said...

Of course you should be proud of what your son has accomplished!! Life is hard enough without that kind of "support" group. Don't let them discourage you. Your boys are growing and learning every day at their own pace, and you are a great mom for taking pride in them. I say keep looking around until you find friends who will celebrate with you when you are ready to celebrate. You can save that group for the days you need some commiseration.

Anonymous said...

Good job, little guy! I'm happy he's made so much progress.

Love,
Noelle

KAL said...

I know how you must have felt, sitting so vulnerable in a room of people who on the surface seem to know more than you, who are farther down the road. I wasn't there, obviously, but when I read this I wonder if the "enjoy it now because that's never going to happen again" was more about the teacher initiating a talk (whoa! a teacher who cares!) about Secondo's IEP and not about Secondo's amazing progress.

Either way, being around that type of support definitely feels toxic. I'm sorry it made you feel bad. It's a huge thing when your child starts responding to his name. Go Secondo!

NinaBean said...

Ha! I laugh in the face of those people. It is INCREDIBLE how far he has come....and yes it is hard...but you are great parents and it will happen again. Goals are made to be met...not to settle and let lie. LOVE YOU!