Tag Archives: Education

Mainstream

Nigel (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 Nigel 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 Nigel, age five, was finally starting to talk, and I wrote, “We hope to have Nigel 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.

Some Good

Like most people, when I was in school (mostly college), I dreaded exams. I much preferred those classes in which the final exam was a paper or a project. Because as much as I could prepare for exams – researching, studying, memorizing – it gave me such anxiety knowing that I would have to retrieve all of that information in a limited amount of time and use it to prove that I knew what I was talking about. So much was riding on it, and I usually doubted how well I would do.

Yesterday, we had a very important IEP meeting for my son who has autism and is now in high school. He requires constant assistance to start, work on, and complete assignments at the public school where he is mainstreamed with extensive support. While we are very fortunate to have that support, I do not want his potential limited by a modified diploma. He needs to be taught to work independently, and I don’t see how that could happen in his current placement. We found a school that specializes in teaching ASD students, and he has attended summer camp programs there. I asked his current school to change his IEP to reflect that his academic needs would be better met in the special program.   

I prepared for this meeting for two weeks. I researched online, I consulted other special-needs parents, and I printed out e-mails from my son’s special education teacher that I had saved over the course of the school year, mentioning various times that she’d had trouble getting him to do the work, and in which she was asking me for advice. I built a case showing that although I appreciate the support that my son receives, his academic needs were clearly not being met. I practiced my main arguments in my head for days. I threw all of my energy – mental, emotional, and physical – into my preparation. I meditated. I prayed. I tried not to lose sleep. I did everything I could.

But this was one exam that I could not pass. From the moment I sat down at that huge, intimidating table, the district special education coordinator controlled the meeting. She knew how it was going to go. She was diplomatic and acted sincere, but she did her job for the school district. No matter how convincing my arguments, no matter how irrefutable my evidence, no matter how much I stuck to the facts and did not let my emotions surface, she did not waver. It didn’t matter what I’d said or how many e-mails I produced. I felt railroaded. We never had a chance.

I left the building and the tears immediately streamed down my face. I couldn’t even make it out to my car first. I was not completely surprised at the outcome of the meeting, but still, I had hoped. And it was quite a blow. I know that I could hire a special education attorney and take the district to court. I know that we have a good case. But I also know that there’s only so much I can take. I’m supposedly so “strong;” I’ve been told that many times over the years. But I’m not. I’m tired. I’m vulnerable. And I’m not going to fight that fight.

But I will continue to work for what’s best for my son, even if it turns out to be something different than what I’d thought would be best. When I tell Nigel, after I’d come home, that the district would not approve transferring him to the special school that he wanted to attend, at first he’s angry. “We need to call the authorities!” he proclaims. But after a few minutes, after he feels my calmness and acceptance, and after we talk about our alternatives, he sighs and goes back to the cartoon he had been watching. I walk out to the kitchen to begin making dinner.

I think about the huge changes that my son – that all of us – will be facing very soon as we move seven hundred miles away to be near the special school in Los Angeles. His father lives there, and my two sons have spent the past eight summers there. They’ll go to the local public school, and we’ll just keep working to get Nigel in the one we want him to attend. But I’m open to the possibility that maybe something else will come up in L.A., some other opportunity that will turn out to be even better for him. Something we hadn’t even thought of. After the meeting, walking out to the car, I felt so disappointed in myself because I knew that I wasn’t going to fight the school district. I felt like I was surrendering, giving up. But now I see it differently. It’s not surrender; it’s hope. Hope for something better.

A few minutes later, as if he picked up on my thoughts, Nigel walks through the doorway of the kitchen, stands there for a moment, and says, “Maybe some good will come of it.” It was most likely a line from a movie. But it couldn’t have been better said. I put my arm around his waist and pat his back and tell him Yes, honey. I’m sure of it.

Please

We all have dreams for our children. Autism doesn’t take away our dreams – it only changes them according to our child’s abilities. And so, we still dream.

My dreams for Nigel have certainly changed over the years, but I still have them. And so does he. Some of those dreams have come to include the possibility of a post-secondary education, which seems out of reach given his academic challenges and the lack of local resources to address those challenges. So, we found a resource – a special school – that can teach him the skills he needs to be able to work independently, and I foolishly believed that all I needed to do was fill out a bunch of paperwork and enroll him.

I had no idea that the administration at his current school might not agree that this is something that he needs. I had no idea that they would be reluctant to change his IEP to reflect that his academic needs would be better met in a non-public school setting. I had no idea that the minor hoops I envisioned jumping through would turn into major hurdles.

The special school we would like Nigel to attend costs more per year than my entire college education did. Even when I sell my house I will not be able to pay the tuition out of pocket. However, we can receive funding if the change is made to his IEP, if it designates that his needs would be better met in a non-public school. I approached the special education coordinator at Nigel’s current school, and she discussed it with the district sped coordinator. They declined our request, stating that Nigel has made progress and “is capable with supports to maintain grades.” We have an IEP meeting scheduled next week to discuss this further. Nigel’s father, who lives 700 miles away, will attend via conference call.

Yes, Nigel has grown. He has come so far. But the fact is that the progress he has made has been behavioral and social. And while this is indeed wonderful, his academic needs are not being addressed. The grades that he “maintains” are heavily modified. The teachers do not even assign him homework! He can barely complete the class assignments, even with constant assistance. I know that they like him and care about him, but it appears that they are just pushing him through. If he cannot work independently, he will not be able to attend college. It’s wonderful that he receives so much academic support; the special education coordinator helps him every day to do his work. But he needs to learn the necessary executive function skills to be able to do it on his own, and I don’t expect him to learn that in a public school setting.

I know that some of the professionals who have worked with my son have read this blog before and might be reading this post. I really hope that they do. Because I want to say this to them:  Please. Please think of Nigel’s academic needs. Please think of the dreams that he has. Please give him the opportunity to utilize the best academic resource that is available. He needs more specialized instruction than what you are able to provide. I do not fault you for this, especially since he is only the fourth ASD student to attend your school. I truly appreciate all that you have done for my son. Please just do this one last thing for him. Please.