Tag Archives: mainstreaming

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.

An Open Letter to My Son’s School Administrators

After a fifteen-month hiatus while homeschooling, Nigel started back part-time at the local public school this week. How has it gone for him? Today was Day 3, and I had to write the following email, which was sent to the school’s special education coordinator, the district’s special education director, the regional autism consultant, and his social skills class facilitator:

Everyone,

I wanted to bring a concern of mine to your attention. Today when I picked Nigel up after lunch, he came out to the car twirling around in the parking lot with a sheepish look on his face. Apparently a group of girls had been hanging around him at lunch, and they told him that another boy had “stolen” someone’s cookie, and that he – Nigel – needed to “do something about it,” even though Nigel had nothing to do with the situation (which I think was contrived). So Nigel said that he chased the boy around to impress the girls, because they encouraged him to. This is just the sort of social problem that causes concerns. Nigel is usually fine in class where it’s structured and supervised, but these problems come up at lunch. The kids are not overtly being mean, but they take advantage of both Nigel’s trusting nature and his yearning to be accepted, and they get him to do things that either make a fool out of him or get him in trouble. After Nigel had chased the kid around, one of the girls linked arms with Nigel and walked somewhere and kissed him, in front of others. These kids are having fun at Nigel’s expense, even though he doesn’t realize it because of his autism.

So I talked with him about a) not chasing anyone around for any reason, and b) not doing things kids tell him to do when he’s at lunch. If this continues, not only will he wind up getting in trouble, when it was not his idea in the first place, but it’s continuing a vicious cycle of using him for entertainment – he told me that the girls actually told him that he was “entertaining.” I do not want my son used in this manner! This has happened before at this school, and I’m upset about it happening again. Is it possible for situations like this to be roll-played in the social skills class? Nigel needs to be able to recognize when his peers are using him for entertainment, since the school doesn’t seem to think it’s important to teach the non-autistic kids not to take advantage of those with social difficulties.

The risperidone is helping Nigel, and he is making such an effort, is so motivated to get back, and he has to deal with kids who try to make a fool of him and get him in trouble. This is why I mentioned the Circle of Friends program at the meeting last week, and why I think it’s so important to implement something like that. The school needs to foster awareness and compassion for students with social difficulties. No one would dare treat someone that way who’s in a wheelchair, so why does the administration say things like “this is a hard age” when someone who does not have a visible disability is targeted? This issue needs to be addressed. I realize that Nigel will be moving on from this school soon [because he is in 8th grade], but he has four more years in this district with the same peers, and there are others coming after him who would also benefit from a program like Circle of Friends. How can we go about setting this up?

Thank you,

Tanya Savko

The good news is that within a half an hour, the district special education director sent me a very supportive response thanking me for notifying her, telling me that she would meet with the school principal tomorrow, and, most importantly, assuring me that she is “committed to making this work for Nigel.”

It sometimes takes awhile – we were having these school issues two years ago – but the squeaky wheel eventually gets the grease.

Changes

That David Bowie song is playing in my head – “Ch-ch-ch-changes . . . Turn and face the strange changes . . .”

Nigel and I have some big changes ahead of us. It’s been a year since I began homeschooling him, and just when I started to feel like I was doing okay with it, Nigel announced that he wants to go back to regular school. I’m not too surprised, actually. He is a social, extroverted person, autism notwithstanding, and even though he’s been involved in Scouts and has other social outlets, he’s reaching his limit of being home with Mom. And it’s showing in his lack of compliance with doing his schoolwork. It’s been increasingly difficult to get him to focus, to gauge if he’s learning anything, and if he is, whether it’s going to stay with him. His thoughts are always elsewhere.

I never expected to homeschool him for very long. Hell, I never expected to homeschool him at all until it became necessary! I had never even entertained the thought. I never thought I was the homeschooling “type,” whatever I thought that meant. I guess I thought it meant people who really wanted to homeschool their children for religious reasons – or any reason, for that matter. But once I realized that he needed it, a) because things were so bad at school that he asked me to, and b) because bussing him to a contained classroom in a different city was not acceptable to me, then I wanted to do it. Then I began to wrap my mind around it and come up with ways to make it happen. It was probably one of the biggest challenges I’ve faced as a single parent – making drastic work changes, schedule changes, and financial changes. I put so much mental energy into just getting used to the idea of homeschooling. Then I had to research what I was supposed to teach him, how to do it, and plan. It required a lot of focus to convince myself that I could do it.

It’s not over yet, of course, not for a while. The first step will be to see his doctor again, since we have decided to try some new medication to help with his behavior and need to get started with that. Then we need to attend his IEP (Nigel has requested, for the first time, to attend his IEP meeting, which is huge) to discuss what his options are. Most likely he will attend two classes in the morning and then come home, so he will be half-homeschooled. We’ll do this for spring term, and if all goes well, in the fall when he starts high school (gulp), he may be able to attend full-time with some support.

So, we’re making adjustments. It reminds me of when he was younger and he attended three different elementary schools before we found the right fit – we constantly made adjustments. We are no strangers to change. Part of me is feeling defeated – I had to work myself up to doing this in the first place (homeschooling), and now it is winding down. But it’s not like I’m throwing in the towel. We’re just making adjustments. Trying to find the right fit again. I have to believe that we will.

New Year, New Behavior

Often at the start of a new year, we note things that we would like to change about ourselves or our lives. We make resolutions and take steps to lose weight, be healthier, save money, or achieve a goal.  We are determined to improve.

Yesterday, I began preparing Nigel for his doctor appointment at the end of this week. He tends to detest these medication-management appointments, being asked to rate his mood, and answer other questions that he would rather not. So I thought that I’d prepare him a few days ahead of time, asking him some of the questions that I recall the doctor asking previously, so that Nigel can start thinking about his answers. “How would you rate your mood?” I asked.

“Fine,” he answered as usual. Then he added, “But I don’t see any changes.”

Surprised and intrigued at this part about “changes,” I pressed further. “What changes are you hoping to see?”

“My behavior. I want to not get angry so much so that I can go back to regular school.”

And my heart thumped as I understood what I had always wondered. Even though Nigel is much calmer with homeschooling than with mainstreaming, he is an extroverted autist, and he misses being in a more social environment. Even though he is regularly involved in Boy Scouts and attends a weekly social skills class, it’s not enough for him. He craves more. The sad part in all of this is that, because of his autism, he usually can’t handle more. It is very difficult for him to regulate his behavior and emotions. He is learning, but I’m hoping there is some medication that can help him with this. He has been on Zoloft to help with his OCD symptoms and anxiety, and that has been beneficial. I explained to him that the medication that he’s been on is not designed to help with behavior modification, but that there might be medication available that can help with that. One of his problems is that when kids do or say something to purposely agitate or upset him, he blows up, and he’s not able to regulate himself. Then he ends up getting in trouble, and it becomes a vicious cycle, because it’s fun for the bullies to upset him. Suggesting to him that he “ignore” them does not work for him. He is not able to ignore them (in my opinion, they should not be doing it in the first place, but that is another issue).

I don’t know if there is a type of medication that can help him with his behavior. We’ll be discussing it with his doctor, but if any readers have any suggestions, please let me know. I’d love to have Nigel be able to attend the local public school, at least part-time, because it would mean so much to him. His new year’s resolution is to go back, and I want to help him achieve that goal.

Room 2

My first experience with disabilities was Room 2 at Los Molinos Elementary School in Hacienda Heights, California. Mrs. Lu, who in my memory did not appear to have any teacher aids or assistants, taught this class of approximately twelve children with various disabilities. That was “mainstreaming” in the 1970s. The kids in her class (ages 6 to 12 or so) had their own lunch table in the cafeteria; no one from another class dared to sit there for fear of being ridiculed by the rest of the school. The Room 2 kids all played together at recess. Occasionally one of them (I remember Stacy, a tall girl with long brown hair and large, thick glasses) would try to join in our games and would immediately be excluded, sometimes even chased away. It was taboo to even talk to “them.”

The rest of us were told that they were “mentally retarded.” That was all. Autism was not mentioned, nor Down’s Syndrome. No one explained what “retarded” really meant, and that not all of those children were retarded. No one tried to teach the rest of us to integrate them, to accept them, to think of them as kids. No teacher suggested that they had feelings like the rest of us. So we recoiled from them. I didn’t feel right about it, but at age eight I didn’t have the strength to stand up to other kids and say, “There’s nothing wrong with them! They want to have friends too!” I certainly couldn’t bring myself to taunt them with shouts of “Retard!” like many of my classmates did, but neither could I bring myself to stop the taunting. I just walked on by, pretending it didn’t concern me.

And now I have a child with autism. I remember when he was seven, hearing someone shout “Retard!” at him in my own front yard. I dashed out the front door and yelled at the boy who said it, “Don’t you dare call my son that! You need to leave now!” I wish I could have slapped that boy across the face. He must have come over because he wanted to use Nigel’s wagon. Or else he was just bored. I didn’t know what to make of it. Too many thoughts rushed through my mind. I wondered how many times Nigel had been called “retard” that I hadn’t heard, like at school.

Room 2 still stands out in my memory. I wonder about the school district’s protocol back then. Why the segregation? Was it fear? Laziness? I am glad that their ideas about students with disabilities have changed, but they have much farther to go for mainstreaming to be successful. Teach acceptance. Teach empathy. Is that so hard? Kids these days are taught about internet safety, recycling, birth control, and plenty of other non-academic subjects. Surely teaching them how to have respect for others, especially those who have disabilities, is at least as important. If we’re going to have more and more autistic kids mainstreamed into the public school system, they need to have the “free and appropriate education” that has been promised to them. Being excluded and called a retard is in no way appropriate. It’s time to retire the Room 2 mentality and make some real progress.

Our Homeschool Story

Every family has different reasons why they choose to homeschool. Many do it for moral/ethical/religious reasons. Some do it simply because they love to spend as much time as possible with their children and want to be responsible for their education as well. Some do it out of necessity for the child. Our family’s homeschool story, of course, falls into that last category.

About seven years ago, I attended a special needs parenting workshop on IEP preparedness and advocacy guidelines. The moderator went around the room prompting all the participants to introduce themselves and mention their child’s educational status. I vividly remember a woman seated by herself who explained in a tired but accepting voice that due to mainstreaming problems, she would need to homeschool her twelve-year-old son who had Tourette Syndrome. At the time, I thought I could interpret the exhaustion on her face, the frustration, the resignation. I thought, because I was a single parent with an autistic six-year-old, that I knew how she felt. I remember at that moment being thankful because Nigel showed such great potential that I wouldn’t need to consider homeschooling in the future. On some level, I didn’t even want to consider it because I thought it was something I wouldn’t be able to do. But now when I remember that woman’s face and her voice, I comprehend on a deeper level what she conveyed at the meeting that night, seven years ago.

This is what I need to do for my son. I don’t know how yet, but I will do it. I will make it work.

I know this now because this is how I felt five months ago. Six months ago, as the school year was about to begin, Nigel asked me several times if I would homeschool him. At the time I had not even considered it an option, mostly because, as a single parent, I had to work. How could I homeschool him? I couldn’t be the stay-at-home parent: I was the only parent!

I will write in future posts about all the bullying and social problems Nigel experienced that made me decide to find a way to homeschool him. Within weeks of school starting, his already fragile status in a low-support mainstreaming situation had deteriorated to the point where I had begun to seriously think about homeschooling him. I started researching homeschooling websites in general and looked at our state’s requirements for specific information. But I had no idea how to swing it financially.

Opportunity knocks. I had been working at my job as account manager for an order fulfillment company for almost ten years. My boss walked up to my desk a few weeks after I decided I would need to homeschool my son, and she said that one of our clients, a music label, was looking for someone to handle the royalty calculations for their 45 artists. It was tedious accounting work, but it could be done from home, and did I know anyone who might be interested? My spine tingled; I hadn’t told her yet that I needed to find a way to homeschool Nigel.

I took the job. And after several weeks of hiring and training my replacement at the office, I begain homeschooling my son. I am so glad he asked me to do this. It is a dream come true for both of us.