The Pursuit of Inclusion: Blazing a Path for Our Son with Prader-Willi Syndrome
Updated: Jun 25, 2021
By Ali Shenk
This past year, our son Dean, who has Prader-Willi syndrome, began his preschool career at the ripe old age of 3. Dean, like others his age, was in a “natural environment” program, which met at a daycare with typical and special needs peers. In this program, a parent or caregiver is required to attend with each student and is there primarily to observe. This experience and others involving mother’s groups, playgroups, and outside educational programs, has given us great insight into what is best for Dean.
I love the special needs environment because they really “get” some things, like how someone with muscle tone as low as Dean’s might need extra support to sit in a chair so they can concentrate more on work than on not falling over. They used a slant board for Dean to view his work at eye level so it would be easier from visual-spatial and fine motor standpoints. And having a PT, OT, and SLP at the ready – for a quick consult even if Dean doesn’t receive their services – is a dream. A relief. The smaller child-to-teacher ratio is necessary for the amount of help Dean needs to be most successful.
And yet, we find that typical environments tend to have more of a healthy fear of specific information we might have about Dean or PWS. They don’t assume they know how certain meltdowns or specific speech issues will play out. They’re not jaded by the usual categories of special needs and approach Dean more as an individual who is perhaps a bit more complex than is their average student. As with our doctors, babysitters, caregivers, or the average onlooker, we find so helpful those who seek to learn rather than those who ignore the pertinent first-hand information we have for them and assume that they know best.
For this coming year, our county does not offer what we are really looking for, which is an inclusive classroom. These scenarios exist in nearby counties, but not in ours. The recommendation of Dean’s IEP team (and something we wanted in part) was a “center-based” (special ed.) classroom. But I asked about opportunities for Dean to interact with typical peers, and I was told that this was only a possibility. For us, leaving this up in the air was surprising, not to mention… unacceptable.
I told his teacher that we were thinking about doing a few days in a typical preschool, and then the other days at center-based. She referred to Dean’s IEP and mentioned that if he wasn’t at center-based every day, he might not be able to meet all of his goals. She said, “You have to decide what’s a priority for you: academics or socializing.” My head spun as I thought about what she said, for it never occurred to me that this was an either/or issue. We want both for Dean, and we weren’t going to get it with what was being offered to us. So we decided to send Dean to a typical preschool two mornings a week, and to center-based three times a week. As we have done for him countless times in these past three years, we are blazing our own path. To do anything less would be a disservice to our sweet Dean, no matter what the learning environment.
Ali Foley Shenk lives in Richmond, VA with her husband Bob and their three boys: Cole, Dean, and Emmett. Ali writes, mostly on her blog at divingintothewaves.com, and is also a freelance copy editor. She also volunteers with the Foundation for Prader-Willi Research (www.fpwr.org).