Finding the Right Fit in a School
One family's experience with the limits of inclusion
If you had told me I would be writing this piece even last year I would’ve laughed. My son James, now 12 years old, was born with a rare chromosomal disorder, which resulted in a variety of diagnoses including PDD-NOS and MR/DD. Since the beginning, an inclusive classroom (integrated co-teaching, or ICT) was THE WAY for us. James had the right to be educated with his peers, he would learn more appropriate and typical social behavior from his classmates, and he would be challenged academically instead of catered to. He had to learn how the real world worked and how to deal with the everyday challenges in it.
Kindergarten was rocky, to put it mildly. James often ended the day in tears, whether it be with wet pants because he was afraid to go to the bathroom alone, or upset because Hunter (yes, I remember his name) had cornered him repeatedly to sing “Happy Birthday” quietly in his ear, knowing James was terrified of the song. The five sentences for homework each night took forever. But rather than reevaluate, we secured a 1:1 paraprofessional and tightened our belts. Because inclusion was THE WAY. My mantra was reaffirmed by teachers, psychologists and other parents year after year. You don’t want to put him in a contained classroom, I heard over and over again. Once he goes in it’s almost impossible to come out. Cue spooky music here.
When we moved to New York the IEP team suggested changing James to a contained setting for second grade. “Oh no,” I replied. “We want James in the least restrictive environment.” I knew James’s rights and was going to make sure we exercised them. If only I had thought harder then about what the “least restrictive environment” really meant for James.
For six years, I reassured myself that the teasing and bullying was worth James learning from the other kids and modeling typical behavior. I needed to disprove the general ed teacher who informed us that James would never read; he does now, and well. I told myself the modified homework still took hours because James was too easily distracted, not because it was too difficult. If we didn’t push his limits, how would he reach his maximum potential? If he didn’t learn how to deal with adversity, how would he ever be able to become a functioning adult in the real world? And how would he ever learn how to do long division and write a topic sentence?
At long last, I realize that Least Restrictive Environment is not the title of a competition. It’s not about how inclusive of a setting you can get your child into, but how inclusive of a setting you should get your child into.
By the end of fifth grade, someone who asked how James was doing in school usually got one of the following responses:
1. It’s a struggle. James usually comes out of school at the end of the day alone (with his para) or upset.
2. It’s so frustrating—inclusive ended up meaning James eats lunch alone and does gym alone.
3. James complains about bullying on a regular basis. I don’t know what to do anymore.
4. The workload is overwhelming for both of us. How can James do long division when he can’t add yet?
5. James talks about how loud his classroom is constantly.
When it came time for middle school, I observed over a dozen classrooms and finally chose a contained setting. But I continued to worry that James wouldn’t be challenged, that he’d be allowed to “act even more disabled,” and that he wouldn’t have the opportunity to make “typical” friends.
I can pinpoint the moment when I finally realized I made the right decision. We arrived at fifth grade graduation a few minutes early, but about an hour later than everyone else so that James wouldn’t get overwhelmed by the crowds and noise. The guard at the door refused to let me enter with James. “He can go down and find his class.”
“He has a para and can’t do stairs alone,” I replied. I didn’t bother mentioning that we were in a new, noisy, crowded place and James was already beginning to exhibit signs of anxiety. A compromise was struck when the guard had another student show James down to his class, where his para would be waiting for him.
A little later the kids filed into their assigned seats and the teachers filed onto stage. Including James’s para. Wait, was I missing something here? She gave me a helpless shrug from the stage and I watched as James sat with several hundred fifth graders cheering, screaming, and whooping. I couldn’t see if he was crying but I could see him occasionally covering his ears and rocking. Of all days, had this school actually decided that James didn’t need his para now? Did they think James had graduated from his disability?
James’s para came to find me shortly after James had received his “diploma.”
“James had had an accident.”
“What?” I replied incredulously. James had not wet his pants since Kindergarten.
“Yeah, the kids told me he peed his pants and there’s a puddle under his chair.”
Wow, I thought, is that how we’re going to end the year? I was suddenly angry. “Please send him back to me, now.” I watched as James stood up gingerly and was led to the rear of the auditorium. “What happened, bud? Did you have an accident?”
“No,” he replied tearfully.
“You’re not in trouble, I just need you to tell me so I can help you.”
“No—I don’t think so!” James wailed, becoming more upset by the minute. So, I checked. And guess what? He was bone dry.
“Why is everyone saying you had an accident?” I asked, puzzled.
“I don’t know,” James responded miserably.
Another student appeared by my side. “It was a trick,” she announced.
“Someone rolled a water bottle under his chair.”
It took a moment for it to sink in. “You mean and then told everyone he had an accident?” And just like that I knew. I was furious, embarrassed and sad for James, but also strangely relieved knowing that there was a contained classroom waiting for us. We left before the ceremony was over. We went out to lunch and toasted a sweet farewell to being included — er, I mean fifth grade — over spaghetti.
The moral of this story? Don’t let the words “least restrictive environment” pressure you to put your child in a less structured or safe place than he or she needs. Contained classrooms have an invaluable place in the educational system. They allow for differentiated instruction in the smallest of groups, and protect vulnerable students like James from the chaotic and sometimes cruel outside world. Is the real world not segregated in many ways as well? And don’t some adults need modifications and adaptations to live their best lives, hopefully surrounded by caring family, friends and social workers?
In the new contained classroom setting, James has received more life skills training in the last year than in his prior 6 years of schooling. On top of regular academics he’s learned his address and phone number by heart, what to do in case of a fire, and is learning office skills, animal care skills and how to work multiple facets of a student-run café, including the all-important money skills and how to make a cup of coffee. Yes, his homework is much easier, but he’s doing it all independently and correctly, without complaining or crying. And nothing delays social development like being teased, tricked, or left out regularly at gym, lunch and recess. James now has the confidence and support to take the bus to school, and buys and eats lunch with his friends for the first time.
These days, when someone asks me how James is doing, my new set of responses look a little different than the ones from fifth grade, just one year ago:
1) He’s doing well. We’ve had no meetings outside of the annual IEP review this year. I can’t say enough good things about the teachers and administration.
2) James is doing great! He hasn’t come home from school in tears once this year.
3) James loves his new school—he hasn’t complained about bullying one time this entire year.
4) James is really excelling at his new school. He doesn’t complain about the homework and we’re all a lot happier for it.
I feel guilty on occasion when I think about my decision to keep James integrated for so long. I do think he picked up some typical behavior and language (good and bad) from his peers over the years in an ICT class, and I appreciate the extra effort many teachers and administrators made to accommodate his many special needs. But I also think James picked up additional anxiety and social defensiveness, and lost years of academic progress because even the modified work was too advanced for him. At long last, I realize that Least Restrictive Environment is not the title of a competition. It’s not about how inclusive of a setting you can get your child into, but how inclusive of a setting you should get your child into. Sorry about that one, James.
Let me be clear – my point isn’t to write off inclusion for everyone. It’s to tell you that contained classrooms can be just as successful, and in cases like James’s, even more so than an inclusive setting.
These days, I’ve not only embraced James’s new placement, I now dread the day he must leave it. To all of the people who told me “once he’s in it’s almost impossible to come out,” that’s now exactly what I’m worried about. Because being contained is just that good.