DSDN Blog Corner: Preschool-The Beauty and Mess of Inclusion

preschool down syndrome inclusion

It seems the world of parenting is filled with debates. I don’t know whether it was always this way or whether this is “a thing” because of the lively—sometimes friendly, sometimes not—discussions that happen on social media, but it seems everything now is debated. One such debate is whether children with disabilities are better served in special education classrooms or in inclusive and/or general education settings.

Let me define those terms as I’m using them. Special education classrooms are segregated, self-contained environments where the teachers are trained in special education and the students all have some sort of disability. Inclusive classrooms are those in which typically developing students and students with disabilities are educated together, and the classroom and curriculum are designed to be accommodating to all learners.

A general education classroom is one in which most of the students are typically developing, and the curriculum and classroom are designed for them…but there may be students with disabilities in the classroom, and specific accommodations put in place to help them learn successfully in that environment.

At least here in this part of California, true inclusion is rare. The schools just aren’t set up for that yet. But integration into a general education classroom is starting to happen more. A lot of people refer to that as inclusion (and indeed I do sometimes, without thinking about it), but really it’s more integration into a general ed classroom.

Needless to say, I’m in favor of inclusion and/or integration into a general education classroom. At least for my own child, anyway. All the research I’ve read and the cases I’ve seen up close and personal have shown me that the vast majority of students with disabilities are best served by inclusive or general education settings, as long as proper supports are in place. And indeed, federal law (IDEA) supports that as well. For good reason: Studies done on inclusion in the UK and the Netherlands both found that students with intellectual disabilities (like Down syndrome) ended up with reading levels two to three years higher and verbal communication levels three years higher when educated in an inclusive setting, compared to their peers educated in special education. Their math skills to tend to be greater when educated in an inclusive program as well. (Click here to read an overview of some of the studies; this article has bibliographic information for the specific studies and articles, too.)

Perhaps even more interesting, if you feel like hearing about another study, is the one that examined disabled students with lower IQs versus higher IQs. (It’s one of the de Graaf studies mentioned in the above-linked article.) The researchers wondered whether students with disabilities were performing well in inclusive classrooms because they happened to be disabled students who were on the higher end of the spectrum with regard to IQ. So they set out to test that theory. What they found was that the students with low IQs (between 35 and 50; I believe roughly 100 is considered about average for IQ) made more academic progress in mainstream classrooms than students with higher IQs (above 50) made in special education classroom. In other words, even the students whose disability significantly impacted their IQ made strong progress in a general education classroom—more so than students with higher IQs in special education.

A few notes here: First, I think IQ is a very iffy indicator of a person’s intelligence. People who test well in general will probably do better on an IQ test than people who don’t test well. And a lot of the questions on an IQ test have a visual-spatial component. If you have a visual-spatial learning disability, as one of my dear kiddos does, you will bomb the IQ test (as he does). So I don’t put much stock in IQ tests. Second, it might sound like I’m slamming special ed. I’m not. My older son had a very good experience in it. I just don’t think it should be the defaultplacement for students with disabilities.

When Sam was a wee baby of just about three weeks old, a person from the school district gushed over him when I brought him with me to pick up Theo. “Oh, he’s just beautiful! And of course he’ll be here in our severely handicapped class when he turns three!”

Wait…what? With him being only three weeks old, how could anyone say where he’d be placed? You can’t predict a child’s abilities and determine his educational future at three weeks old!

That stayed in the back of my mind for a long time. In fact, it still hasn’t left. Maybe it never will. It was one of those defining moments in my life as a mother: the first time someone made an outward, spoken judgment about my child based solely on his disability.

When Sam was just over two years old, we were lucky enough to get a spot in a local inclusive Early Intervention program. It was basically like a preschool, only the teachers were trained in Early Intervention, there were therapists on staff, and the classroom was made up of many kids with disabilities and a few typically developing kids.

Sam did terrific, and his skills grew a great deal! So much, in fact, that when he was poised to turn three and enter the school system, we were certain that he could handle a general education preschool. (Remember, we have no preschool inclusion programs around here.) However, the school district didn’t offer any sort of program other than special ed, so they insisted he needed to be in special ed.

Thanks to IDEA, we were able to fight that. It required getting a lawyer and going through mediation, but ultimately we ended up with Sam in a private general education preschool. And, as we suspected, he thrived! Was he behind his peers developmentally? Of course. But it didn’t seem to bother him or his peers one bit—they all worked and played together in class, just as kids do.

That isn’t to say it was all smooth sailing, of course. One little “side effect” of Down syndrome that Sam is particularly plagued by is a constantly runny nose during cold/flu/allergy season. It’s not uncommon in kids with Down syndrome, thanks to their very narrow nasal passages. Boogers are just a part of life for him. An unappealing part, I admit…but part of life. The preschool we originally put him in changed directors, and the new director was nice in many ways but had zero tolerance for snot. Given that snot is just part of life with Sam, he ended up getting sent home for a snotty nose far too often. So for his second year of preschool, we switched him to a program right near our house, where we hoped they would be a little more zen about snot.

Guess what? He did fantastic! (And never got sent home for a snotty nose. The only time they ever called me to pick him up, he legitimately had a fever, and I was very glad they had called me!) Was he behind the other kids developmentally in his pre-K class? Yes, of course. But it didn’t seem to bother him, and it didn’t seem to bother them. The kids embraced him and accepted him as one of their own, despite the fact that he was the only nonverbal student in the class. One little boy in particular went out of his way to befriend Sam, and the two of them were thick as thieves.

Sam graduated preschool this week, and we could not be prouder or happier with how it’s gone. Sam was thrust in with typically developing kids, but he didn’t suffer from a lack of 1:1 focused attention and work on specific skills. He learned organically, through play, as typically developing children do at preschool. He learned all his uppercase and lowercase letters, his numbers up to ten, many of his colors, many shapes. All of the stuff that kids are supposed to learn in preschool, but he didn’t need to be in a segregated environment to do it. He learned beautifully, just by being included in a class where these things were being taught.

That was really important to me—that Sam be given the chance to learn in a natural environment, like any other child. Admittedly, I don’t know everything there is to know about Down syndrome and cognition. But I know my own son, and from what I’ve seen of him, he’s actually very typical in terms of development—just on a much slower pace than a typically developing child. So I didn’t see a need for him to be educated differently—it seemed to me he was likely to learn just fine in a traditional environment, just more slowly.

In addition to Sam graduating from preschool this week, we also had his settlement conference with the district. Normally, this would be an IEP meeting where we’d hash out his educational goals for the next year, as well as his placement. But because we had him in private preschool, the district wants to see how he does in public kindergarten before writing specific goals. This, I think, is completely fair and appropriate. How can they set a communication goal when they haven’t seen how he communicates in the classroom, right?

So the IEP meeting has been pushed off to September, after he’s been in public kindergarten for a month and they’ve had a chance to see what he can do and where we should focus his goals. But we had a settlement conference to determine placement. Given that for preschool placement we had to go to mediation, I was a bit apprehensive. But it ended up being the easiest conference ever! The district representative was delighted to see how well Sam had done in preschool and was entirely comfortable with us putting him in general ed kindergarten.

We requested that his speech and occupational therapies be push-in, rather than pull-out, and they readily agreed to that. (Pull-out means he’s taken out of the classroom, away from his peers, for therapy. Push-in means the therapist comes to the classroom and works with him in the context of the classroom environment. It means more time around his typically developing peers, and a more organic therapy session, to my way to thinking.) Rather than having him spend any time in the special ed room, we requested that the resource specialist (a.k.a. special ed teacher) spend one hour a week in the general ed classroom, consulting with Sam’s teacher for support as needed.

And finally, the sticky piece: the aide. Districts typically don’t like to give aides because it’s expensive—they have to pay a person to work 1:1 with a child. Sam needs an aide for toileting and to ensure that he doesn’t elope (a.k.a. wander away), and an aide will also be helpful when the teacher gives an instruction that he may need repeated. (Delayed processing is extremely common—maybe even universal?—in Down syndrome, so it’s entirely possible that when the teacher is giving instructions, Sam may need some repeated now and then.) That said, this is actually minimal assistance: Toileting takes up only a small portion of the day. Sam is highly unlikely to elope from the classroom itself—it’s more an issue if they are walking to another room on campus. And Sam’s auditory processing is actually pretty good, so he generally follows instructions without a problem. So we can’t go without an aide (because how will he use the toilet?), but we really don’t need one that much.

As it turns out, we have a perfect solution. One other student with a disability will be among the 125 students entering kindergarten at the school this year. Sam and that child will be placed in the same class, and a shared aide will work with both children.

This is perfect. There is evidence that when a 1:1 aide is used, children sometimes become overly reliant on the aide and don’t develop independence that they could have. So sharing an aide is actually better for Sam than having a 1:1 aide, in my opinion. Second, it means Sam isn’t the only kid in class with an aide. Third, and maybe most important, it takes pressure off the teacher. I’m quite sure that when one is managing a class of 25 kindergarteners, it would be difficult to stop and assist one child with things he might need extra help on. The aide removes that from the teacher’s plate—she is there solely to help the two students with disabilities when they need support, freeing up the teacher to teach the class as a whole.

How Sam will do in kindergarten remains to be seen. I feel very, very confident, though. He rocked preschool, and we now have supports in place that should ensure that he has a successful kindergarten experience.

Getting to this point wasn’t without difficulty. I would’ve preferred not to have a legal battle for preschool. I would rather not have had to repeatedly try to educate a preschool director that chronic sinusitis does not mean a child is sick and contagious. I definitely would’ve liked to avoid phone calls like the one to the local Presbyterian preschool, who, when I said “My son has Down syndrome, and I’m looking for a preschool program for him…” interrupted me and said, “I’m sorry, we’re not equipped to handle that. They do have special schools for them, you know.” Without even so much as meeting my son to see what exactly they’d need to be “equipped” for.

But it was worth it. It was worth every single second. Every moment when I sat down and cried. Every moment when I worried and wondered, “Am I doing the right thing?” when people would say, “But don’t you think it would be better for him to have the attention he’d get in special ed? Don’t you think he’ll get lost in the crowd in general ed?”

I listen to the parents of older children and adults with disabilities, as well as the adults and older children with disabilities themselves, and one things I’ve heard from multiple people has really stuck with me. A speaker I saw last year was talking about her adult son, who has an intellectual disability. She pushed for inclusion when inclusion just wasn’t done at all, and in retrospect she is very glad she did.

She related a story about a dinnertime discussion of Shakespeare, where her son (then in high school) jumped in said, “That’s not Othello, Dad. That’s Hamlet.” And he was right. “If he had been in special ed for his entire education, he would’ve never been exposed to Shakespeare,” his mom said. “But because he was exposed to the same curriculum as other students in general ed, he was able to join the conversation. And that’s what we want for him: We want him to be a part of the conversation.”

That’s exactly what I want for Sam. I want him to be exposed to all of the topics that we’re all exposed to. It doesn’t matter to me if he doesn’t understand them in the same depth as someone typically developing; what matters to me is that he’s exposed to them in a way that’s accessible for him. So that when he is out in the world and someone starts a conversation about, say, government, he can actually join that conversation because he will have been exposed to the concept, rather than being in a program where the main focus was on teaching “life skills.”

Do I want him to know life skills? Absolutely. But he’ll learn those from us, just as Theo does. I don’t need the school to teach him how to tie his shoes; I’ll do that. I don’t need them to teach him how to use an ATM card; I’ll do that. What I need them to do is expose him to the same curriculum as everyone else and let him show them what he can do. And we and the school will work together to ensure the proper supports so that he can thrive in that environment. Because, as a human being, he has a right to that—and I won’t settle for anything less.

Am I saying that he’ll be fully included for his entire school career? No, I can’t predict that. I can’t predict that any more than the district employee who stated his placement at age three weeks could. What I can say is that we will encourage him to be fully included with appropriate support for as long as that is the environment that is working best for him. And right now, that environment is working beautifully.

At five, Sam is already part of the conversation. And he will continue to be—because he can, and because we will make sure it happens. No matter how messy or sticky it gets. Because he is worth it and he deserves it.

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