Inclusion: From architect to spectator

My daughter Devin has Down syndrome and has been in an inclusive classroom since kindergarten. We have had the good fortune of living in a neighborhood where our elementary school already had the services she needed, a very welcoming and open-minded community and for the most part, pretty wonderful teachers (some were ‘eh, not so much,’ but I had that experience with all of my girls, as I am sure you’ve had with your kids as well). As I think back, I suppose you could describe me as the protector and architect of inclusion for Devin--I volunteered at the school with my oldest to get the lay of the land before Devin began, then I worked with her IEP team on challenging and appropriate goals when she was a student. We had big birthday parties with lots of kids--I got to know their names so we could talk to Devin about them; learning who she liked, who liked her. I took her to private speech therapy sometimes twice a week so she could better communicate with her peers and other adults. We opened our home to every playdate any of my three girls could ask for, and even some they didn’t want. The plan was for all of the kids to get to know Devin, maybe like her and think she was fun, so that one day they’d look out for her too.

Now that Devin is in high school, I’ve had a new introduction to inclusion. One I no longer celebrate or seek for warm fuzzies or validation. Instead I watch with curiosity and emotion, sometimes with wonder and sometimes great difficulty. Oddly enough, it all feels good, because I know it is what Devin wants--arranged by her, not me. I am no longer by her side, but waiting on the periphery as her safety net. When I see her in an uncomfortable situation, and even if she makes eye contact or I motion for her to come over to me, she stays where she is; in the mix with her typical peers. It is a difficult thing to watch, sometimes with a heavy heart and so much pride all at once. I am in awe of her awareness of what she wants and her courage to go after it.  

Some may say, “So what, we all get uncomfortable and have to get through it. Big deal, it’s part of life.” That is true, but here’s the thing, Devin knows she can’t do everything that others can.  She knows because she waits while her peers are doing something harder than her skill level allows. She knows that while they are chatting back and forth easily with these new friends, she is often not certain how to engage when they do talk to her. But most important, she knows she wants to be there. So she sticks it out and learns more every day. She doesn’t take my cue to come and sit with me. She doesn’t give in to flight and leave the room. She doesn’t get angry. Instead, she waits. She waits for the interaction that she is comfortable responding to. She waits for her turn. She waits for the next challenge that lies ahead and continues to go after what she wants.  

Today, she went off to her first day in a large school with the hallways full of kids who are getting taller and taller, and she (inching towards 5 feet) eagerly sought eye contact with a friend, an acquaintance, a teacher, anyone. It was hard for me to stand in the corner, next to the wall, as inconspicuously as possible while she tried to include herself. Some kids stopped to say hello, some smiled at her, but most didn’t even notice her. She was unphased, because she was still looking. My heart was in my throat, and then I realized, those kids, the ones that didn’t notice her, they were also seeking eye contact with their friends, their acquaintances. The fact that they didn’t notice her was something I began to embrace. It meant  that she really is just another freshman in the packed main entrance on the first day of high school, figuring it out just like the other 1500+ students that were swimming the halls, not sure where to go, and not caring. Because the first day isn’t about class or schedules, it’s about seeing your friends. As my heart began to ease, although still racing because come on-it’s still the first day of HIGH SCHOOL- I made sure she made contact with her paraeducator- walked back to the car and silently said,  “We did it.  She is included.”

The hardest part of inclusion is becoming a spectator, and not the architect. Because in my opinion, if done correctly, inclusion is seamless. No fireworks, no shining lights; just lessons learned each and every day for everyone, including me. Exactly as designed, by Devin. I think she is going to have a great year. I am also realistic; I know she is going to have highs and lows, just like her sisters, but I wouldn’t have it any other way. Have a great school year, everyone!