My middle son, who has severe disabilities, turns three in September (I’ll call him James). Time to start considering preschools! This, it turns out, is an entirely different task than it was when we decided for our oldest typical son. There is an educational trend toward full inclusion of special needs students in a typical classroom. Even severely disabled kids. Here‘s a nice summary of research and some of the pros and cons.
Inclusion seemed like a good idea in theory. Special needs kids learn from peers and emulate peers. Better to supply peers who are not exclusively disabled. Moreover, it could be beneficial to the typical kids, as long as it didn’t distract them. Learning to deal with people who have very different mental lives from one’s own is vital to true maturity.
Obviously, inclusion is more easily accommodated with milder disabilities. If any severely disabled kid would be a good candidate for inclusion, I think it would be James. He is non-ambulatory, which of course makes it more difficult. But other than that, he’s a good pick. His cognitive skills are at about the developmental level of a 12-18 month old child. His social skills, however, are higher – at about 18-24 months. He is more aware of his environment than many kids with his level of disability. He is extremely socially interested, and especially interested in what other kids do. On playdates, he frequently imitates the other kids. He’s not at all aggressive. Indeed, his disposition is insanely easy-going (we like to say he has mood swings from merely pleased to absolutely thrilled). He never has temper tantrums, and he is impervious to noise and crowds (it is something of a joke in our family that when there is a loud noise, it is our oldest typical kid who will be covering his ears and having a complete meltdown – not our special needs kid).
If James goes into our county’s preschool program, he will be placed in a program that only includes kids with severe and profound disabilities. Basically, as long as you’re non-ambulatory, that’s where you go. The county school system is well-funded and has a good reputation. The ARC runs a private preschool near us that is full inclusion. Typical kids to the most severely disabled. This is somewhat unusual in practice at the preschool level, so I was really excited to visit. So we took a tour.
In a classroom of about 15 kids, there were one or two who appeared more disabled than James, and the rest higher-functioning. Maybe a third to a half were typical. That seems like a good mix. I don’t want him to be the most disabled or least disabled kid in the class. But there were only three adults. That teacher-student ratio is more than adequate for typical kids. But severely disabled kids need some serious attention. My kid can’t get in and out of a chair by himself. He often can’t reach toys he wants. He’s apt at any given moment to put something in his mouth he’s not supposed to. And he’s basically non-verbal, so he can’t ask for help. If you’re attending to him, he can make his desires perfectly clear, but if you’re paying attention to a zillion other kids, it’s not going to work. He is never one to forcefully demand attention.
The classroom floor was entirely linoleum, which surprised me. Like many severely disabled non-ambulatory kids, James gets around on the floor (in his case, a bizarre patented one-sided-commando-crawl-barrel-roll — it ain’t pretty, but he gets wherever he needs to go). He will explore his environment for hours on the floor, and gets extremely antsy if he’s in his wheelchair too long. Also like many severely disabled kids, he is apt to topple over suddenly when sitting. So how was he ever going to get safely out of his wheelchair? Would he be stuck in there all day because that would be easiest on the teachers? I asked about this, and the tour guide suggested I get my kid a helmet. When I replied that a simpler solution might be a play area with a couple of gym mats, she didn’t respond.
In the playground, I saw two kids in wheelchairs being walked around in circles. They were not being put in swings, or helped down a slide.
There may well be wonderful full inclusion programs. Maybe James will attend one someday. But what I saw was a preschool for typical or mildly disabled kids that seemed to have no concept of a good environment for severely disabled kids. If full inclusion is actually achievable to the benefit of all, it requires an enormous amount of planning and care. I saw good intentions, but no planning. I would rather he miss out on having typical peers than be in a classroom that can’t handle his needs.
Your decision sounds entirely reasonable to me.
I am of mixed opinions about full inclusion. I concur that it can provide many social and intellectual benefits for both typical and disabled students. But I’ve had many disabled students simply get overwhelmed by being placed in mainstream classes without adequate supports, and they can get very frustrated, isolated and unhappy. I think it’s great when there really is the full complement of supports and therapies available, but if not I’m not sure it’s always the right fit.
Our district has different policies in different places. For a lot of kids, they weave them in and out of mainstream classes throughout the day. This strikes me as a reasonable balance between mainstream socialization and more tailored attention.
I actually had a kid that had been mainstreamed one year and then had him again in special ed the next. The difference was actually night and day. In the mainstream class, he was the reject. A lot of time was spent trying to get him to behave and trying to get other kids to stop pestering him. I didn’t have him the full day as he punched a kid in the nose over lunch. In the special ed class, though, the kid was a leader. He helped with the other kids. It was a pretty astonishing turnaround. Of course, you can’t do that indefinitely as eventually they will have to reconcile themselves to the real world. But the first and second grade aren’t the real world. (It’s worth noting that this kid is higher-functioning than Rose’s.)
That doesn’t surprise me. It may be a good idea for everyone one day, but right now it does not seem like it’s good for everyone.
“There may well be wonderful full inclusion programs. Maybe James will attend one someday. But what I saw was a preschool for typical or mildly disabled kids that seemed to have no concept of a good environment for severely disabled kids. If full inclusion is actually achievable to the benefit of all, it requires an enormous amount of planning and care. I saw good intentions, but no planning. I would rather he miss out on having typical peers than be in a classroom that can’t handle his needs.”
This sounds really familar. Oh, right! I hear people say that about employment options once people are ready to transition out of high school *all the time*. What can I say… It’s true. Even in my organization (which is considered to be one of the most rapidly progressing in the state), we struggle to find typical jobs for people with high support needs in this rural community. I wish I had all of the answers, but it does not seem like full inclusion is working for everyone at this time. I’ll keep working on it, Rose. In the mean time, I’m sure it was a difficult decision. Thank you for sharing your experience.
Well, it was difficult in the sense that there’s something appealing about full inclusion. But at the county severe/profound preschool, there were 3 teachers to 8 students, the classroom was stocked with gym mats and standers and adaptive desks, and I walked in while they were getting every kid involved in an art project, even the most profound, who was more disabled than my kid (he could only make choices by eye gaze – but I loved that they were getting him to do that). When I asked if they left kids in a wheelchair for a significant portion of the day, the teacher looked as if I’d asked if they practice Satanic rituals during snack time. Plus it’s free, plus bus service door to door. In the end, it wasn’t a hard decision.
I could definitely see how even more drastic issues could emerge for young adults, since the difference between the disabled people and typical is even wider.
Thought-provoking piece. I think something it quietly highlights is the reality that “special-needs”, “special-education”, “inclusion”, and other similar terms, when used as adjectives, are really umbrella terms that can mean a wide variety of things. What you saw was one attempt at inclusion. Whether the shortcomings it demonstrated in providing a suitable environment for your son were based on a specific philosophy/approach, limitations in resources (including personnel and training as “resources”), or something else, it’s clear their view of inclusion is not the one best suited for your son. Which is not to say inclusion is not the way to go… Just not inclusion in that way.
The general rule (as I believe stipulated by the ADA) is that children be offered access to the “least restrictive environment”. Despite being more “inclsuive”, the program as described sounds more restrictive for James and, thus, not likely the best one for him.
If I may ask, does he have an IEP, or whatever the state and/or age equivalent is for him where you are?
Yes, and it is interesting that for him effectively the least restrictive environment is actually the most restrictive environment.
I totally agree that what I saw did not rule out the benefits of inclusion in theory. It just showed me that it takes a lot of work in practice, and the practice is not always there.
Right now, he is getting services under an IFSP. We are having our first IEP meeting in July. I am considering requesting music time (or whatever) a couple of times a week with higher-functioning kids so he gets some exposure. I was not happy with the developmental assessment that was performed, so I am wary.
Do you still fall under health/family/child services or are you working with the Dept. of Ed? Typically a child has to be “school-aged”, meaning they are five and/or entering Kindergarten (or its equivalent) before you work with DoE. But those folks tend to have a better grasp and focus on educational and schooling needs, where the other group primarily focuses on the home and family. Neither one is better, just two different systems that you have to navigate.
Based on what I know about your son (which isn’t much specifically but I trust your honest knowledge of him profoundly), I’d agree with your plan to mush for Music or other such classes where he can participate with few or no accomodations (or for which greater accomodations can be appropriately offered). That, to me, is the true meaning of “least restrictive”.