Integration (Down Syndrome)

Kathleen Basi is a stay-at-home mom, freelance writer, flute and voice teacher, liturgical composer, choir director, natural family planning teacher, scrapbooker, sometime-chef and budding disability rights activist. She puts her juggling skills on display at www.kathleenbasi.com

Kathleen is here today to talk about her daughter’s journey with Down Syndrome and the importance of integrating special needs children in “normal” classes with everyone else. Her message is a powerful one that we should all pay attention to, for all our children’s sake.

*        *       *       *       *       *       *      *

Kathleen and her beautiful daughter, Julianna

Ordinarily, I’m not an uptight mom. I have my daughter Julianna to thank for that. Julianna is four and a half, and less than two hours after she was born, she began exercising my “chill” muscle. That was when the OB came in and told us Julianna had Down syndrome.

Six weeks later, we welcomed spring from the stuffy confines of a pediatric ICU, our newborn on a ventilator, suffering from RSV that nearly took her life. Five months after that, it was heart surgery; two years later, pneumonia.

At this point in my parenting journey, it’s pretty much impossible to get me to freak out about the kids. Unless, of course, the subject is kindergarten. Julianna’s still ten months away from this milestone, and I’m already taut as a piano string about it. Which is particularly unreasonable since my oldest child is a first grader. But this transition, from preschool special ed to the hallowed halls of grade school, seems particularly fraught with larger meaning. Because for the first time in her life, Julianna will be in a school with typically-developing children whose purpose there has nothing to do “peer mentoring” her.

As I ponder this transition, I’ve become more and more convinced that the way special ed was done when I was a kid, and remains to this day in so many ways, is inherently damaging to society as a whole.

When I was in high school, students with mental disabilities had virtually no contact with the general population. I remember a girl, her books clutched to her chest and her eyes determinedly focused on the floor, traversing the halls with singleminded determination to remain invisible. Other than that, I never saw one person from the special ed classroom. And thus, I grew up desperately uncomfortable around anyone with a disability—physical or mental. I’m not proud of this, but it’s true—and I would imagine that many people reading this post had similar experiences.

In adulthood, then, I was totally unprepared to accept, let alone welcome, a child with disability. It took some major attitude shifting for me to realize that my daughter was not damaged or flawed in some way—that she is unique and beautiful *because* of her differences, and that those differences, real though they may be, are inconsequential compared to the ways in which she is just like everyone else. Every day I realize again how true is the NDSC slogan: “We’re more alike than different.”

But in my local community, I don’t see much indication that this message has any roots. Anecdotal evidence tells me that the walls in our schools are well-built, to the point that the self-contained early childhood center didn’t even warrant a mention on the district’s early-release announcements until we called them to task over it. If special ed is that far off the administrative radar, how can I expect any meaningful inclusion in the schools?

In conversations with special educators and parents who have chosen the self-contained route, I have learned that the issue of inclusion is grayer than it sounds. Is it really better to do the bulk of instruction in a regular classroom, amid distractions and constant reminders that the child is different from his or her peers? Hard to say; the answer lies on a different part of the continuum for every child.

But here’s the thing that worries me: if we put children with special needs behind a wall, even for the noblest reasons, how can we ever expect them to integrate into society as adults?

My daughter needs to be around typically-developing children, and they need to be around her. Not just at recess, not just in music class; there needs to be meaningful interaction, a sense that she is part of the class, someone whose status in the school is the same as anyone else. When that happens, much of the fear and discomfort with which people view disability will lose its power. And until that happens, I know what my job is as Julianna’s mother.

Talking about Awareness: Integration means that children are introduced to disabilities at a younger age and therefore are learning the importance of tolerance as soon as possible. Do you remember the first time you met a disabled person? How old were you? Do you remember what questions you had about the person/disability/situation/etc.?

Tagged as: disability & children, Down Syndrome, Integration in schools, Teaching Kids about disability, teaching tolerance by being tolerant