The Inclusion Roller Coaster


This isn’t the first time I’ve told this story, and I’m sure it won’t be the last. One day, when Sam was a wee bitty thing, about three weeks old, I arrived to pick Theo up from preschool, with Sam snuggly asleep against my chest in a carrier.

“Oh!” cried one of the school district employees. “Look at how beautiful he is! And of course, when he gets old enough, he’ll come here and be in our Severely Handicapped class!”

My still-tender gut felt like it had been punched. It was the first time someone had judged my newborn son based solely on his disability of Down syndrome, but it wouldn’t be the last. It was a rude awakening—the knowledge that someone felt they could make a determination about my son’s educational future when, at that point, he was doing what every other three-week-old does: eating, sleeping, and pooping.

So you can imagine how I felt last week, when Sam was safely in his mainstream kindergarten class, and I was met at another school, a thirty-minute drive from my house, by a member of his educational team and the principal of the new school, who cheerfully announced, “You’ll be touring our Severely Handicapped classroom for your son.”

That’s right. All the work we had spent five years doing—all the therapy appointments; the fight for his rightful place in a mainstream preschool; his own hard work at that preschool, learning all of his numbers and letters just like all the other kids; our careful crafting of a vision for his future that we shared with his educational team; all my countless hours spent researching inclusive education and talking to the families who have come before us—and we had come full circle. We were about to step inside the Severely Handicapped class that the district seemed to assume would be the best fit for Sam from the moment he was born with an extra chromosome.

Why were we there? Well, it’s a long story stretching back about two months, to when Sam started kindergarten.

We thought Sam would rock kindergarten. He had done terrific in his mainstream preschool—never any behavior problems, enjoyed the classroom routines, participated with his peers, learned all that good stuff you’re supposed to learn in preschool, like how to take turns, how to work as part of a group of peers, how to recognize letters, numbers, colors, and shapes. He had it all. Well, with one big piece missing: his speech is still very, very delayed. He’s not entirely nonverbal, but I think he can be accurately described as having “emerging verbal skills.”

So we entered mainstream kindergarten full of confidence. We were prepared for a fight with the district, but much to our surprise they said, “We are really working hard to move toward a model of inclusive education. We know the benefits of it for all students!” And without an apparent second thought, they accepted the fact that I had enrolled Sam in our mainstream neighborhood kindergarten. They assigned him to a class with two other students with IEPs (individualized education plans) so that all three children could share one aide in the classroom. Perfect, right?

Well, no. We were barely into the year when they told us that Sam was requiring so much attention that the aide couldn’t attend to the other two children she was supposed to. He was refusing to come in from the playground. He was doing the flop-and-drop (a routine parents of kids with Down syndrome know all too well!) whenever he didn’t want to do something. He was making loud humming noise in the classroom that was distracting the other kids. (He does that when he’s tired. It’s a self-soothing mechanism.) At times he was throwing objects in the classroom. He was shutting himself in the bathroom. And on and on.

Yet, he didn’t seem upset. He went to school without a fuss, and he came out of the classroom smiling happily every day. So clearly there wasn’t some major problem in the class—no one was hurting my son or anything like that. He just didn’t want to comply with the classroom behavior expectations.

There’s a saying in the world of nonverbal and preverbal kids: behavior is communication. Clearly Sam was trying to communicate with us, but unraveling what was a herculean task. The district’s answer was to assign a behaviorist and a behavioral aide to Sam for six to eight weeks (the maximum allowed time) to help decipher what his behavior was communicating and work out alternative strategies so that he wouldn’t be frustrated/overwhelmed/whatever it is.

We agreed to this strategy, and overall it has worked well. The behavioral aide he has been working with is young and enthusiastic and has a lot of good strategies. She does things like give Sam a specific task to encourage him to enter the classroom after recess: for example, sometimes she rolls a hula hoop, which he loves to watch and run after, and then tells him it’s his job to put it away. He likes that, and so he does it and is no longer sitting on the playground, refusing to come in.

But there are still bumps. Frustrating ones, sometimes. Like the dreaded color cards. Oh, how I hate the color cards! The current method of school communication (in many schools—this is not just ours) is to assign a color to a child’s behavior each day. Every child starts the day on green, which is a good color—you’re having a good day! If the child misbehaves, they slowly move down the color scale. Yellow is an iffy day, blue is a rough day, and red is a really, really bad day.

So every day, the kindergarteners would file out of the room, proudly clutching their green cards to show they’d had a good day at school. And most days, my son would file out proudly clutching his yellow or red card. He has no idea what these mean—he doesn’t know they mean he had a bad day. But I quickly realized that the other children know—and they became obsessed with it. Every day I was hearing from his classmates, “Look, Mom! Sam got a yellow card!” “Mom! Sam got a red card!”

No. Just no. I was not going to have my child doing a Walk of Shame every day with his card. I spoke to the team and expressed my concern with this sort of “public shaming” and how damaging I think it is—Sam’s classmates aren’t old enough to understand the nuances of the color card system. All they realize is that Sam is the “bad kid” in class who never gets green. Not okay.

Thankfully, the school agreed with me and quickly switched to a different system for Sam, where his color for the day is simply marked on a sheet that comes home to me with an explanation of what activities he did during the day (since he can’t tell me) and any notes on good or not-so-terrific behavior. That’s fine. Although I’m not a fan of the color system in general, as long as it’s not a public Walk of Shame, we can handle it.

But the little bumps and glitches like this have kept popping up. Little fires here, little fires there. I’ve discovered when you have a child with a disability like Sam’s, everything is viewed as something to be handled. When a typical child has a bad few days, the teacher might email the parents or pull them aside at pickup and comment that it seems like the child is having a rough few days—it’s really no big deal. But when you have a child with a disability like Sam’s, every little thing seems to become a behavior that needs to be managed.

This is not just the case with Sam—I have a number of friends with kids with Down syndrome who just started kindergarten, and we’re all noticing the exact same thing. One got a report that her daughter was singing under her breath in the library. Imagine that! A five-year-old not being totally silent in the library. Gasp! When I commented that Sam had gotten a red card for refusing to come in from recess, another friend laughed and sarcastically said, “A kid at our school got a red card today too, but it was for holding another child down on the cafeteria floor and punching him in the face. I can totally see how refusing to come in from recess is on the same level as that!” One friend’s daughter got behavior cited because she wouldn’t come in from recess unless someone held her hand. Another gets behaviors cited every time her son rolls on the floor instead of attending to the classroom activity.

All of this is pretty typical five-year-old behavior, really. (Well, except holding down another child and punching him in the face. But that was a typically developing kid who did that one!) And if you have a nondisabled five-year-old who does this in class sometimes, you really only get contacted if it becomes a persistent issue. But if your child is on an IEP and has a significant disability, it seems these behaviors are immediately noted and a plan for how to manage them is put in place. It gets to the point where all of us joke sadly about how we kind of cringe when we go pick up our kids, wondering what the day’s complaint might be.

I suppose the little fires here and there are understandable, in a way—although the district is “moving toward a model of inclusive education,” this is a new shift for them. And at Sam’s school, I’m relatively certain he’s the only child with Down syndrome to have been educated in the mainstream. Much to my chagrin, he’s a bit of a pioneer. I would’ve rather we follow in someone else’s (successful) footsteps, but I guess someone has to be the pioneer, and that someone is apparently Sam.

So we’ve been muddling along, and it’s been going okay. Not great, not terrible. Just okay. Until a couple of weeks ago, when a member of the team approached me and asked if I would be open to considering another placement for Sam. “I’m not closed off to anything,” I said carefully, “but I want to be honest with you: It is very important to me that Sam remain at his neighborhood school. It’s where his brother goes, it’s where all the kids he’s going to grow up with go. And this is a small town with a very tight-knit feel: It makes me feel safe and good knowing that the entire town pretty much knows Sam and would watch out for him if anything were to happen—if he were to wander off campus or something. You’d have to show me a really good alternative to make me give that up.”

The member of the team suggested we meet informally and chat more, and when we did she outlined her concerns: the current kindergarten setup, she felt, was not a good fit for Sam. She didn’t necessarily think any of the other five kindergarten and transitional kindergarten classes at the school were either. Rather, she felt he needed to be in a very focused classroom where he could really focus on building certain core skills that would allow him to mainstream more successfully in another year or two or three. “I know a teacher at a neighboring school who is wonderful with inclusive teaching!” she said. “Of course, the district will support you whatever you choose, but if it were my child, I would change him to this other school. Will you at least see it?”

I’m nothing if not a team player, so of course I agreed to see it but reminded her that it’s very important to me that Sam remain at his neighborhood school. “Isn’t there a similar class on our campus?” I asked.

“No, they closed it a few years ago,” she said. Okay, then.

And so Chris and I found ourselves at the other school, walking down the hall to the classroom that would supposedly be the best fit for Sam, according to this team member. And when the principal announced that it was the Severely Handicapped class, I flashed back to my tiny three-week-old Sam, snuggled against my chest, and I swallowed back tears.

We stepped in the classroom and observed. The children were friendly—at least most of them. One shot me the stink-eye, but several of them waved and said hello. There were at least two with Down syndrome in there, and one other that I thought might possibly have it. Every child in that room had a significant disability—there were no typical peers to be seen.

The room was nicely set up with lots of visual supports, which are so helpful in teaching many kids with disabilities. But that pretty much sums up my positive thoughts on it. The teacher seemed fine—no complaint there. But it was so obviously not an inclusive model that I felt nauseated. The room was sectioned off with partitions, so kids could work without distraction. Helpful, yes. A model of what the children will experience when transitioned back into a mainstream classroom? No.

One little girl with Down syndrome who appeared to be about nine needed to use the bathroom. She asked and was told no, and the teacher and aide conversed for a moment about how “she just went; she doesn’t need to go.”

Maybe that’s true. Maybe she’s just bored and trying to get out of the lesson. But maybe she does need to go. Lord knows, I sometimes go to the bathroom and then have to go again ten minutes later. Who’s to say this little girl wasn’t in the same predicament? Maybe she drank a lot of water at snack time.

She was nine years old (give or take) and wasn’t being given the courtesy of knowing her own body. I have a problem with that. If Sam is going to grow up to be a reasonably independent adult, part of that is knowing his own body and needs. We are teaching him that when he needs to go to the bathroom, he goes. And to be honest, I find it very belittling that a child with Down syndrome would be told that she doesn’t know her own body. Down syndrome is a developmental delay; it is not a condition in which people aren’t capable of the same basic knowledge as anyone else. Their processing is delayed; their communication may be delayed. But they are still capable of knowing when they need to use the bathroom. And so, it really bothered me that the little girl wasn’t given the benefit of the doubt—even if yes, she might’ve just been bored.

That sort of different treatment because of disability is very troubling to me, and honestly, it was a big red flag. It’s just symbolic, in a way, but I don’t want to put Sam in an environment where he’s treated as if he isn’t capable of knowing his own needs. That seems decidedly sheltering to me, and sheltering is what we’re trying to get away from. Independence we like; sheltering we don’t.

After leaving the classroom, Chris and I both concluded the same thing: We couldn’t see how it was really going to prepare Sam for inclusion or mainstreaming later on. It was too different from the “real world” of school. Sure, he’d get one-on-one attention and learn how to function in that classroom, but that classroom was so very different from a typical classroom! And historically, it has been very difficult for parents to move children with Down syndrome out of segregated classrooms and into the mainstream once they have been in a segregated class, so we do not feel terribly confident that if he entered this class, he ever would be put back into a mainstream class.

Long term, this worries us. Sheltered workshops for adults with disabilities are being phased out (for good reason), and competitive integrated employment is what we’re all working toward. People with disabilities are capable of working in many integrated employment situations—and what’s more, they want to! So why on earth would we educate our son in a sheltered classroom when our ultimate goal is for him to have the opportunity to live his life in society, surrounded by people of all abilities? It’s counterintuitive.

I expressed some of this to Sam’s educational team member, and she replied, “I understand, but I want to be blunt here: My official recommendation at your IEP meeting on Thursday is going to be that Sam be placed in this classroom. I just really think we need to front-load this type of support for him.”

The alternative was to keep Sam in his mainstream classroom but have his aide work 1:1 with him on a scaffolded curriculum. “But that’s not really inclusion,” the team member insisted, “because he’s not working on the same things as the other kids.”

“But it’s more inclusive than shipping him off to another school where he’s not around typical peers at all,” I replied. (Sam would be around typical peers at recess at this other school, as well as a few very limited other opportunities. But for the most part, he would be fully segregated in the Severely Handicapped class.)

And this seems to be where the district and I disagree. I went to a district-wide Special Education committee meeting that very night, where I sat next to the district superintendent and at the same table as a member of the state Board of Education. Countless other people in the room were high-level personnel in the school system, and I listened as they talked about their goal for more inclusion in the district. And here’s what I realized: They see a 1:1 aide as more restrictive than a segregated classroom.

“Restrictive” is a key word here, because federal law states that individuals with disabilities are entitled to an education in the least restrictive environment. That law (IDEA) is what protects Sam’s right to be educated alongside his typical peers. But how is “least restrictive” interpreted? The district seems to see aides as more restrictive than segregated placements, and I disagree. I know there is a danger of the student with a disability becoming too dependent on an aide, but that’s a bridge we’ll cross when we get there. For now, if it takes a 1:1 aide to help Sam succeed, Chris and I personally find that far less restrictive than sheltering him in a segregated classroom.

And as for Sam doing different work than the kids in his class, the district themselves supported that during their inclusion presentation at the meeting I went to Tuesday night, where one of their slides had this line: “Inclusion does not mean that the student has to be able to do exactly what everyone else can do in the classroom to be included.” In other words, Sam can be working on his own scaffolded curriculum and still be included.

We went to our IEP meeting on Thursday with nervous hearts, waiting to be told that Sam’s official placement recommendation would be in the Severely Handicapped class at another school. The team member had spent two weeks telling us that’s what she felt was in his best interests, and despite the fact that I had made my distaste for this option clear, I was expecting to revisit it at the IEP meeting.

We walked into the room and sat down at the table with about ten school and district employees gathered around. I set the Tupperware of fresh-baked gluten-free brownies on the table as a peace offering and waited for the stressful dialogue to begin.

Guess what? It didn’t. Somewhere at the eleventh hour, the district must have realized we weren’t going to budge, because the topic of moving Sam was never discussed. Instead, we talked about Sam’s successes, and how his negative behaviors were slowly but surely decreasing in the classroom. We talked about how well he works with his aide (who, unfortunately, will have to be replaced, since we’re only allowed to have her for six to eight weeks based on her district classification). We talked about how his teacher created a special assessment for him to see where his skills are, since his limited verbal ability prevents him from doing the same assessment as the other kids. We briefly discussed how he’ll be assessed for report cards, with me refusing their suggestion that they not issue him a report card, because I fear it will later prevent him from being put on the diploma track, and students with disabilities who move off the diploma track find themselves unable to access post-secondary educational opportunities and are ineligible to apply for many jobs. And we talked about how the resource team will help create multisensory educational materials that will allow Sam to work on the same core topics as the other kindergarteners, but scaffolded to his level.

And here, I recognized my own failing in this process: At our previous IEP meeting, I had outlined our short-term and long-term vision for Sam’s education, but I had not given them specifics for exactly what I wanted him to learn this year. I had assumed that, based on our vision, they would modify the curriculum appropriately. That didn’t happen, and it made for a confusing situation for both Sam and his teacher, so I presented a set of four very specific educational goals that I want added to his IEP, dealing with sight words, number correspondence, and grouping (important kindergarten concepts).

We left the meeting relieved. We left it with a plan. We left feeling as if the team is now all on the same page. And most importantly, we left it with no mention of the Severely Handicapped class.

Believe me, this is not a decision we took lightly. The easy thing would be to put him in that class. It would be manageable for him. He would undoubtedly learn some things. But we look to those who have come before us, and we look at thirty years of research proving that for people with intellectual disabilities, the strongest outcomes are achieved when the person has been educated in an inclusive environment, alongside typically developing peers. We look at our long-term goal of helping Sam become the most independent, productive, happy person he can be, and we know that we’re making the right decision. It’s not the easy decision, but it’s the right one for Sam. And so, we will continue on this path, navigating the bumps along the way while keeping our eyes on the future.

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