One year after mainstreaming her gradeschool-aged son, a New York City mother reflects on the new set of challenges that come with that "progress," from persisting stigmas for her son to shifting her own parental identity.
Last year, my son Jamie entered his first year of full inclusion for the second grade. That year, he was with the “typical” kids all day, but he had with him his own teacher to guide him through the transition. Officially, we were still enrolled in his special needs program, and it was there that I found the last months of sanctuary in that community of parents, therapists, teachers, and advocates. The year went very well, and before long his special needs teacher’s role became minimal and she receded into helping the rest of the class. She did stay on him in some ways (making sure he unpacked and packed his things without becoming utterly distracted, and reminding him to keep some space between himself and his friends).
This year, for third grade, he officially mainstreamed and flew solo. He was registered in his school the same as all the other kids in his class. The year had its ups and downs, but mostly ups.
The truth is, he main–streamed with a stigma hanging over him. He was called names, threatened, and harassed by a boy who ended up bullying him for the better part of the year, always at lunch and recess. In other words, out of the range of his teacher. Where was the lunch supervision? Where was the recess supervision? I spent time in and out of the principal’s office and after a few college tries, the discordance faded, but not without some intervention.
For the most part, Jamie’s issues have diminished. He still has some articulation issues and a tendency to get in people’s personal space. He likes to tap on their heads and hug them if he likes them, and in that context, the rigidity of a mainstreamed environment was taxing. The expectations on him are as they would be for everyone else. There are rules about not hugging and grabbing and tapping (and there should be!), and so that’s a continual challenge. It’s gotten easier for him, though.
In some ways, the fact that he attends a Catholic school has helped to smooth the transition. Because Jamie’s issues were sensorial in nature—he could become easily distracted by loud rooms and large buildings filled with a lot of people—the structure and small, quiet environment of the traditional classrooms suit him. The streamlined blue-and-white plaid uniforms quieted a cacophony of colors that would be found in a public school environment. If students were birds, his school would house a flock of blue jays, while PS 41 down the street would be filled with a wide range of tropical species.
Academically he thrived, since cognitive issues were never on the table. He got straight A’s and beat the leading chess player from the eighth grade in his beloved chess club. This club marked another new terrain for us—joining a "typical" after-school club, which seems to be launching him into a great new passion.
My advocacy for him has shifted this year from minding the IEP and external services, to monitoring the way he was being treated by other students. In the context of this new normalcy, his little boy behaviors that would have been excused before, and even treated by an occupational therapist, were instead swept under the rug of, “Boys will be boys.” Boys stomp, grab, and argue when they’re playing baseball on the playground. In special ed, they have OT and counseling to smooth out the rough edges of both the social and the physical.
I realize now that my patience with his issues waned a bit, probably because I’m out of the daily checks and balances of his former special needs program. I was no longer talking about his behaviors in therapeutic terms, but in playground terms. "Keep your hands to yourself!" I’d shout from a bench in the playground when he’d grab an arm too hard during an impromptu ball game.
The thing is, the sensory issues he has can’t be "cured." They don’t go away. His coping mechanisms have developed (for example, he’ll stand with his hands held behind his back when he’s talking to a new kid), but he’s still going to be tempted to relate to other people by tapping on them and hugging them. He’s still a sensory seeker. This, of course, isn’t always appropriate, but most kids who know him well now understand it as a part of who he is, while others can’t deal with it (and shouldn’t have to). Also, his articulation isn’t as clear as his peers—I’m always asking him to "give me eyes" and to repeat what he said—and he’s gotten teased about "talking like a first-grader." Learning about these instances was always by happenstance. "Mommy, did you ever have the feeling that you talked like a first-grader?" Hmmm…
Sadly, part of my story of this past year is moving him through this bullying issue. His conduct grade slipped from the first quarter to the second quarter for not being able to keep his hands to himself, but he’s since pulled it up again. This last quarter he got straight A’s. He got straight A’s. He got straight A’s. Can I say it again?
At the beginning of the year, I got to know another mom on the playground. Her son was new to the school, and he was having a hard time. His physicality on the playground was more "lumbering and crashing tornado" than "new kid.". I knew those issues, boy did I know them. After getting quite friendly with the mother, I asked her if she’d ever thought of evaluating him for occupational therapy. She knew our history, and I explained how much it had helped Jamie to learn how to manage his body in space. She grew cold, and it took another six months before she’d acknowledge me again. I tried to explain to her that I didn’t think there was anything "wrong" with her kid. I sent her a fabulous article about sensory issues published by the Child Mind Institute (by my writer pal Beth Arky), and I got a curt "we all have our hands full" as a response. Ah, so this is how it was going to be. I can mainstream into a new community, but I’m either going to have to remain the constant educator, or ignore this long part of my parenting history altogether. Apparently, I had to pull away from my former SN language if I was going to hang with this set of parents.
In the end, this was the year that I had to balance the thread of being Special Needs Mom and Typical Mom. I can hear people telling me, why must you adapt a title at all? My answer is as follows: It’s not that I feel the need to label myself, but rather to honor the splitting identities I’ve accrued. To honor what it means to be my kid’s advocate, both then and now. To understand the language on both sides of the tracks, so that I can work with everyone for his better good now that he’s mainstreamed. It’s important for me to keep tabs on his challenges, because they’re not being as supported as they once were. Or, you could say that they’ve developed beyond requiring as much support.
Specifically, from the beginning of the year to the end of the year, he’s gone from having an incomprehensibly messy desk to a tidy one. This is not a small deal. He’s also made some friends, one who likes to find Jamie and squeeze him hard and hug him dearly every day before he leaves the playground, both of them off to their routine evenings of homework, dinner, bath, bed. Some things, after all, never change.