Life, Autism, Disability, and More

Tag Archives: special needs

April 6It’s the most wonderful time of the year…no, wait, that’s Christmas.

This was ARD Day!

An ARD is a (normally) yearly meeting that is meant to help determine the IEP for a child with special needs. For those not up on the alphabet soup, ARD is “Admission, Review, and Dismissal,” and it deals with creating, updating, changing, whatever goals and objectives for the year. They happen to bring a child into special programs, keep the child in them, or move the child out of them, whether because the services are no longer needed or because the child is graduating. The IEP is the Individualized Education Plan, which is needed because every child in special education will normally need their own plan in order to make sure they are meeting grade-level (or functional-level) education goals.

Makes sense so far?

Today was our meeting.

I had gotten the call from the speech therapist last week, which I had blogged about, and the meeting itself was this morning.

First – the speech therapist really, really thought that we were gonna agree to her idea of halving the services Simon received. She began all friendly like, touched me on the shoulder (don’t touch me!!!), and mentioned that she “and Mom” had “chatted.” Uh-huh. “But Mom wanted to think about it.” It felt like condescension center in the room. So Mom spoke up and pointed out, “Yeah, and I disagreed with it then, and I disagree with it now, too.”

The conversation (often one-sided: her side) went on for almost an hour. She kept arguing that he needed *less* pull-out speech therapy because “the goal of speech therapy was to get out of speech therapy.” Which is kind of funny because there we were, thinking that the goal of speech therapy was to increase his speech and help him with daily functioning! How silly of us! She argued that measurements were subjective (uh, no, they are objective when you make an objective and then measure it by 7/10 tests as a “mastery” of the objective), and she argued that the fact that he hadn’t progressed in some of his goals as proof that he needed less speech therapy and more “consultation,” i.e. she would talk to the teacher and observe him, but not actually work with him.

She couldn’t provide any evidence or proof that her method of change – giving him less one-on-one instruction and help – would actually helped, nor could she back up her choice except for her “professional opinion” (which she repeated about eighty times in that hour). She cited that Simon was answering questions about videos, and said they were different videos every time. I’d like proof of that. Because he sure doesn’t do that anywhere else. He still says “yes” when someone asks him how his day was. Her response was that it wasn’t a “wh” question. Umm, yeah, because people only ask “wh” questions. “How” should just be dropped from the English language!

Another thing she said that set my nerves on end was when we stated that he did not make requests – he simply will say what he wants “banana” or “crackers.” She said that what he was doing was acceptable “for his disability and his placement.” Woah. So we should just give up on getting him to use sentences because he has autism and is in a self-contained room? Really? Cause if it’s all about disability and placement, lady, then let me tell you what I think about your functional level when it comes to talking to parents…

Sigh.

In the end, we had a bit of a stalemate and agreement: Patrick had pointed out that if having the consults were so important, then why not add them to the already in-place speech therapy? I think, to shut us up, she agreed to provide both the consults and the in-place speech therapy through the first nine week period of the next school year. The best part? That’s more than she wanted to give him. She would have done better to just argue to keep it the same.

Now, we will be going down after those nine weeks. Unless, of course, we call another ARD and argue some more. We’ll see how it goes. She might be right, and going down might help. But I think that going down now is a bad idea, and as I’ve said (and heard) so often – parents are the experts on their child. A woman who sees my son once a week is not an expert on her, regardless of her training. She may be an expert on speech, but that doesn’t mean she knows Simon.

Second – the OT, after hearing the hour-long argument with the speech therapist, said, “You know, I was going to suggest going down to three sessions with him, but I think we’ll just keep it at four.” To be fair, if she had suggested three, we probably would not have argued, but I’m glad that she kept it at four because I do think that will be good for him, at least through the transition to junior high. Maybe when we have our ARD in the fall, we’ll drop that down.

Third – and final – argh! ARD! ARDs are always stressful. And this time, for some reason, we hadn’t been provided with any paperwork ahead of time, which made it worse because we weren’t sure what to expect. In the past, we normally get some paperwork to let us know what they’re going to go over. I really don’t like not getting it. The goals/objectives should be decided by the ARD committee, and when the school keeps the parents in the dark about the drafts, it can make things worse, cause more stress, and, honestly, make it feel like the parents are not a welcome part of the committee.

Now, we’ve been doing ARDs for nine years, and we’re pretty comfortable with the ideas of asking questions, asking for clarification, and disagreeing with what other people say. But for those who are new, here’s my advice: don’t be afraid. And remember that if you don’t ask, you don’t get. Get data if you need it. Get information. Ask questions. Demand responses, if you have to. You’re the expert on your child. You’re the advocate for your child. You’re the one who has to be willing to do what it takes. So, to totally steal someone else’s motto: Just do it!

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Bowling practice!

Bowling practice!

I know, I know, I just can’t shut up about the whole tolerance thing. But I really can’t. It’s too important.

And I was reminded of that back in December at the tournament for Special Olympics bowling.

It was an interesting morning. We got there on time, found out what lane Simon would be bowling on, and then settled in. Minutes after we got there, the boy sitting next to Simon pulled down his own pants and began masturbating. Whoops. The aide with him stopped him, and the boy sat back down, seemingly okay again. Time for the pledge of allegiance; everyone stood, the pledge ended, and the boy whacked Simon on the head. Hard.

For a second, we thought Simon wasn’t going to respond to it. He will sometimes get hurt, and then ignore it, like a toddler who falls down and only cries if a parent says something about it. This time, though, I think it was too much of a hit, and he started crying and getting upset. Not that anyone can blame him. I mean, if I’m standing there saying the pledge and someone whacked me on the head out of nowhere, I think I’d start crying, too.

The aide with the other boy pulled him away, and promised they would keep him away from Simon. We said fine because, hey, it happens. Patrick went down to the seats and held Simon, trying to calm him, and it took a while, but eventually, Simon seemed to be doing a little better. But he still wanted Patrick down there with him.

Another mother was also down with her son. No one was bothering anyone. No one was complaining. No one was unhappy (except for Simon, who was still getting over the random smack).

Then a different mother came over, looking for a Special Olympics official. She was unhappy because there were parents down with the children – how dare that happen! She asked an open question about why the parents were down there, and I explained what had happened with my son and that my husband was there with permission and good reason.

“Well,” she huffed, “what about the mother down there? Who’s she there for? Why’s she down there?”

I told her I didn’t know, and she continued her mission, finding someone to complain to about the nerve of some parents, and succeeding in getting the other mother removed from the sitting area.

I don’t want to fall back on a favorite saying of a friend of mine, because the saying is completely inappropriate, yet somehow it makes me giggle when I apply it to this situation. The saying? Snitches get stitches.

Really, I don’t think she should get stitches, but I do wonder why she felt the need to police other parents and other children. Aren’t we all in this together? Aren’t we all just trying to get along, get through, get happy? Why would you try to make someone else – and someone else’s special needs child – unhappy? Why?

Now, to be fair, I do understand that she was looking for just that: fairness. She didn’t want anyone getting special treatment. But sometimes the rules, especially for kids with more severe problems, are hard. Not being allowed to have a parent or aide with them can make it very difficult for them to compete. The bowling alley is loud, it’s overwhelming, and it’s very, very busy. The kids need all the support they can get. Yes, you want your kid to win if he or she is the “best,” but what about going with the theme of Special Olympics? If I cannot win, let me be brave in the attempt…