I'm very proud of today's post.
Let me tell you a tiny bit of back story of how I know Cindy. Jack was in a full-inclusion general Ed Kindergarten last year. On the 2nd or 3rd week of school, I had noticed a sweet little girl in Jack's class had really made the extra effort to engage Jack... better yet, I had noticed that her Dad picked her up in the afternoons... and he wore Pink Floyd T-Shirts. So, one day, I mustered up the courage to approach a stranger and said "Excuse me, you're Emily's Dad, right? I just wanted to say that my boy, Jack, is in her class and has autism. Emily is just the best typical peer model I've ever seen. You should be very proud of her"
As soon as I said it, I realized how goofy it sounded. Instead, I just got a smile and "Oh. I'm not surprised. Emily's older sister has Down Syndrome".
And Mike and I (and his family) have been best friends ever since.
Cindy is Mike's wife. She asked if she could write a post about her relationship with Autism as a parent of Down Syndrome. I couldn't have asked for a better idea.
A 2010 poll reported that 15% of Children with Down Syndrome were also autistic.
A 2011 poll reported that 20% of Children with Down Syndrome were also autistic.
A 2012 poll reported that 25% of Children with Down Syndrome were also autistic.
Whichever number is correct... our communities are clearly combining.
What does that mean for schools? What does that mean for services? What does that mean for inclusion?
Ladies and Gentlemen, I proudly present my friend and fellow mom, Cindy...
I don’t have a child with autism. My daughter was born with Down syndrome, but I too, have a relationship with autism. Like with all close relationships, my feelings about autism are complex. Thorny, even.
It probably began the day we dropped my daughter off at her pre-school class. She was only 3, and a beneficiary of an early intervention program. The teacher that morning had her arms around one of the students, restraining him. There was a pained but resigned look on her face as the kid thrashed and screamed. The teacher was going to be like that for a while. Meanwhile, her aide was running around getting ready for the class, and here we were, dropping off our child, our baby, into their care, into that environment. What was I to do? Just leave her and go? Did the adults in the class even know she was there?
We had our own issues at that time. We were working on attachment issues, and we were supposed to give her a cheerful goodbye, and just go. She needed to get used to the going-to-school routine. And so I left her. With a screamer and two adults who were not paying any attention to her.
Over the years, she picked up many things from her autistic classmates. Thankfully, the head banging only lasted one time (she got angry, banged her head against the wall, paused, then rubbed her head going “ouch“). Most annoying was that my verbal child regressed to grunting and pointing for things she wanted. We were able to nip that in the bud fairly quickly, but the spinning / stemming has not stopped to this day.
Over time we have come to find that Special Education is dominated by autism. All of the teachers and therapists can speak with knowledge and experience about educational methods that work, only to be met with blank looks when I brought up that children with Down syndrome are good mimics and will try to beguile you out of doing schoolwork. They hadn’t read that literature, apparently. You see, my daughter was the only child with Down syndrome in the class. Perhaps, the first child with Down syndrome those just starting out in their careers had ever taught. Autism, on the other hand . . . They had lots of experience with that.
On the flip side, our family has been enriched by knowing people who have been touched by autism. Our second daughter was in Jack’s kindergarten class and she thinks he is the most interesting boy she knows. She gets all excited when goes over to Jack's house, and she doesn’t want to leave. This is not an exaggeration. She cries like a little part of herself is breaking when she has to leave their house.
I can’t help but believe that parents of autistic kids are just better at the whole special-needs-parenting thing than I am. They are better connected, better at navigating health care systems, and know every educator and therapist in town. On the whole, they are just better people than average. They are funnier, watch cooler shows on TV, and generally seem to enjoy life more than I do.
I don’t have a child with autism. My daughter was born with Down syndrome, but I too, have a relationship with autism. Like with all close relationships, my feelings about autism are complex…