Monthly Archives: September 2010

Mainstream

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Neil (in the car on the way to the video store):  What does ‘mainstream’ mean?

I should have known it was coming at some point. But I didn’t. And I felt like a deer in the headlights.

It’s a simple enough word, perplexingly defined by Webster as “the predominant current or tendency of a movement, discipline, etc.” But it’s the secondary definition that we special-needs parents know all too well: “v.t. put (handicapped students) in regular classes.” Yes, that’s exactly what’s printed in my desk dictionary, complete with the parenthesis. And I cringed when I checked it later, wondering if Neil had heard or read something similar, causing him to ask. Wanting to hear it from me. Wanting to see what it meant to me, perhaps. Wanting to know what it meant for him. It’s something that we special-needs parents mention at IEP meetings and in blog posts and annual Christmas letters (well I do, anyway): Our hopes of mainstreaming. Our relief and pride when it happens successfully. Our sadness and frustration when it does not. I am unfortunately too familiar with the highs and lows of mainstreaming. Sometimes I think we give that word too much power.

Back to the car. Back to me wondering what to say in the second after he posed his question. I figured I’d keep it general, didn’t want to get too heavy. After all, we were going to the video store. The possibility hit me that perhaps he had read the word in the context of movies. So I tentatively forged ahead and said, “Um…mostly it means ‘typical.’ Like with movies and books – what most people are watching and reading. It’s the usual stuff.”

“Okay,” he said, his way of indicating that he understands something. A few minutes later we arrived at the store, and the conversation didn’t continue.

But the box had been opened, and I couldn’t just close it back up. We needed to discuss what was inside. He’s a sophomore in high school (!), he has started attending his own IEP meetings, and he should know. He should hear it from me. So a few days later (processing time for both of us), I went to talk to him in his room one evening, when I knew he would be relaxed, and I broached the subject. I asked him if he remembered asking me what ‘mainstream’ meant, and where he had heard or read it mentioned before. He confirmed that his question was in regard to movies, and then I told him that there was another meaning of the word that I wanted him to be aware of because he might hear it at his IEP meetings or read about it somewhere. I told him that when students have autism or other differences that affect their learning, “mainsteaming” them means that they are taught in the same classroom with other students, but that they often have aides for assistance. I briefly told him of his own mainstreaming history. I told him that some students have difficulty being mainstreamed and are taught in smaller classrooms or homeschooled, and that they are just as important, just as intelligent. They just have different educational needs. I told him that mainstreaming isn’t best for everyone. That sometimes it wasn’t working for him either, and that was okay. We just had to find something that worked for him. And we did, whether it was full-time homeschooling or part-time mainstreaming. It was all okay.

And gradually, over the years, that powerful word lost its influential quality.

Mainstreaming is not about the right way or the wrong way, superior if you are or inferior if you aren’t. It’s not the Holy Grail of education, as I mistakenly believed in years past. I remember the Christmas letter I wrote ten years ago, how I unwittingly glorified mainstreaming by crowing about how Neil, age five, was finally starting to talk, and I wrote, “We hope to have Neil mainstreamed for Kindergarten next year.” In fact, he wasn’t mainstreamed until second grade, and that was difficult at best, even with a full-time one-on-one aide. He wasn’t mainstreamed for most of middle school either. And here’s the thing – he’s a better person for it. He has not had a typical education, but he has had a well-rounded one. He has learned just as much, if not more, and he is happy. And I am just as proud of that.

The Boy and the Vacuum Cleaner

[This post was originally published at Hopeful Parents]

Once upon a time there was a little boy who had autism. He did not start talking until he was five years old, and he often screamed and butted his head into people and walls to indicate his frustration. He also had agonizing sensory issues that made it impossible for him to filter loud noises, and he would scream and bolt whenever someone turned on a mechanical device in his presence. He would be disturbed by leaf blowers more than a block away, and the vacuum cleaner in the house was such an assault on his hearing that he would fly into a panic if anyone so much as walked in front of the closet in which it was kept. His parents would try to “sweep” the carpet as often as possible to avoid using the vacuum cleaner. When they absolutely needed to use it, one parent would take the little boy outside and comfort him while the other parent vacuumed.

After some time, the little boy’s parents divorced, and the mother would vacuum whenever he was visiting his father’s house. This went on for a few years, and then the father moved farther away, and the little boy could not visit him weekly. By this time the little boy had started learning to talk, and when it was time to vacuum, the mother would take him to his bedroom, show him how to cover his ears with a pillow, and shut his door while she quickly vacuumed.

It went on like that for several years. The mother would always notify her son before she would turn on the vacuum cleaner (as well as the blender, the food processor, and any other mechanical device in their home). The boy’s sensitive hearing still kept him most anxious about the vacuuming, and as his verbal skills increased, he would head to his room and admonish his mother, “Don’t start until my door is shut!” and call out “Is it over?” when the vacuum cleaner had stopped. By the time he was a teenager, the boy told his mother, “That vacuum is like shrieking banshees in my ear.” She thought it would always be that way, and sadly she wondered what other sounds in the world still tormented her son. He had gotten to a point where he could go to a movie theater if he wore ear plugs, but the vacuum cleaner still plagued him.

Then one day, after being in a series of situations involving loud noises and noting that her son was affected by them far less than he used to be, the mother decided to try something. She approached her son and mentioned that it seemed that his hearing wasn’t as sensitive as it used to be, and he said, matter-of-factly, “Well, I’ve just learned to deal with it.” She pointed out that he could now mow the lawn while wearing ear plugs, and she asked if he would be willing to try that with vacuuming.  “Okay,” he said in his typically flat voice.

The mother gave him a brief tutorial on the vacuum cleaner, and, armed with his trusty ear plugs, the boy began to vacuum his bedroom while the mother went to work on something in another room. Amazed that he agreed to do it in the first place, she figured that he would do a quick job and shut the vacuum cleaner off as soon as possible. So when four minutes had gone by and the vacuum cleaner was still running in his room, she went back to check on things. She discovered that her son had put an attachment on the vacuum nozzle and was methodically detailing the corners of his room. She stood there, marveling at this unexpected turn of events. And then, with the ear plugs still firmly planted in his ears, her son looked up at her and smiled. The shrieking banshees no longer consumed him.

After the mother picked herself up off the floor, she praised him for taking the initiative and doing the extra work in the corners. She asked him how it went for him – vacuuming! – and he said in his flat but beautiful voice, “It was fine.” And even though it was a small thing, inconsequential in the grand scheme of things, the mother crossed “vacuum” off her mental list of things that her son, now almost sixteen, would “never” do and reminded herself that anything is possible. Anything.

Protocol

Apparently when I wrote my last post and mentioned something about not getting any of the dreaded phone calls from Neil’s school yet, I neglected to – you know – knock on some wood. Because the very next day, the second day of school, I had been sitting there at work for merely an hour when the phone rang, and when I saw “school” pop up on the caller ID, I really couldn’t believe it. Already? Aw, hell.

Upon closer, split-second inspection, I discovered that it was coming from Adam’s school, and I relaxed a little. But only a little. Because when Adam’s school calls, it’s usually because he’s sick, and I still wind up having to leave work to go pick up a child from school. He seemed fine when he left the house an hour ago! I sighed and picked up the phone, resigned to my fate.

But the call wasn’t about Adam. It was the school district’s main nurse, who happened to be at Adam’s school that day. And she was calling about Neil and his seizure protocol. My heart started thudding as soon as she said it.

Some of you may recall back in June when Neil had his first major seizure. It was horrible and scary, as they all are, but when the smoke cleared and I had done some research, I was able to identify what might have triggered it, and thus learned how he could possibly avoid future episodes. Neil stayed with his father for several weeks over the summer, and he made sure to refrain from watching movies in the dark, especially those with flashing lights. He is also learning to employ some stress-reduction techniques, since he was under a lot of cumulative stress at the time that the seizure occurred, and that most likely made him susceptible to it. And (as I make sure to knock on my wooden desk), the great news is that he has not experienced any more seizure activity at this point (that we know of).

But because he had that seizure, the school district requires there to be a seizure protocol on file in case he has a seizure at school. And I’m glad that they require it, of course. It’s a signed document that his teachers must be aware of in the event that he has a seizure in their classroom, so that they know what to do. It’s necessary, it’s important, but it’s unwelcome. Of course, I’m glad that there is a seizure protocol in place, and I approve it, but I wish it didn’t have to exist. I wish my son hadn’t had a seizure. I wish I didn’t have to worry every day about him riding his bike to and from school and having a seizure on his bike. It’s hard enough already. Everything he deals with is hard enough. And now this.

Like it or not, this is our reality. This is the latest thorn that has found its way to my side. One more worry in a long chain of fears. And I will just have to face it, like I do everything else. The seizure protocol came home today for me to sign, and we have an appointment next week with his doctor to see if she wants to schedule any more tests. If she does, we’ll do them, of course. But part of me wishes I could just bury my head in the sand. And all of me wishes that knocking on wood would be enough to keep the electrical activity at bay forever.

On Our Mark

Okay. I think we’re ready now. The supplies have been purchased, the backpacks have been packed, the fees have been paid, the papers filled out. The anxiety has set in.

Yes, there’s nothing like the start of a new school year to ramp up my stress level. I know – everybody’s busy running around, getting the ducks in a row, the usual for those of us with kids in school. For me, it’s not really about that. It’s that year after year my PTSD kicks in every time the phone rings. And I’m referring, of course, to the years and years of teachers and school administrators calling me at work to tell me that my son is having behavioral issues and I must leave work and come to get him. The phone rings and I instantly tense up. In recent years, with caller ID, the tensing doubles when I see “school district” on the screen. God help me, it’s a horrible feeling. It’s an alarm, a pre-panic, a dread. And it used to happen on a regular basis, but especially at the beginning of the school year.

Today, the first day of tenth grade (!), there were no calls. That doesn’t mean that there won’t be any later, I know better than that. But it’s a good start, and I’m grateful for it. Here’s what else I’m grateful for: a very positive IEP meeting last week. Some of you might recall how the last IEP meeting went, and how much I had prepared for it. I prepared for this one just as much because it was just as important. In fact, in some ways, this one was more important. The meeting in May was about getting the school district to agree that Neil’s academic needs, since he could not work independently, would be better met in a specialized setting. They didn’t agree, but they didn’t offer any alternatives.

So I came up with an alternative on my own. Over the summer, I researched various programs in public high schools with good special education departments. I thought, what are they doing that we could emulate? I printed out course descriptions from some of those schools that included specialized classes designed for students with autism to teach them the executive function skills they need to be able to work independently, which is exactly what Neil needs. I also researched various books written for educators on how to teach executive function skills to students like Neil, and I printed out descriptions of the books off of Amazon. I went to the IEP meeting, print-outs in hand, and proposed that the school create a weekly class on executive function skills for Neil and any other students who would benefit from it (and of course there are other students who would, even if they do not have an ASD).

And they said yes. They said yes not only to meeting my son’s needs, but to setting the precedent for future ASD kids at that school (and, as we know, there will be more). They said yes to being an even better school. They said yes to the other kids who really need some extra help with learning how to be a good student, autistic or not, but whose parents may not lobby as hard as I do. They said yes.

And this mom is feeling a lot less anxiety, a lot less dread. In fact, I’m feeling pretty excited about this school year. I’ll even try not to cringe when the phone rings.