Isolation. Rarely is the bone-aching pain of special needs so completely summed up in one word. The word conjures up images of life going on while the unpopular and unfit are left behind; the loneliness of hours upon hours dragging on with no phone calls, no visits from friends, no invitations from others come to mind; being marginalized, ignored, treated as an annoyance, or unlovable by everyone surrounding makes the sting of tears almost feel like a relief when the shutting down of your heart can be reversed for even just a few moments. After all, this isolation becomes such a permanent companion that we must find some way to cope with it. Shutting down emotions often seems like the only defense.
Yet, that desire to connect with others, so hard-wired into our core, can be too overwhelming to ignore.
Perhaps this is why I have found myself acquiescing over the years as my daughter with severe allergies, severe ADHD, sensory processing disorder, and Asperger’s Syndrome seeks to socialize with others in our neighborhood. I know. I know. Kids on the autism spectrum are supposed to be content with being all alone, but not mine. Her perseverations often involve athletic and outdoorsy activities, which necessarily involve others. At the same time, she is not at all age- appropriate with her social skills or theory of mind.
What this frequently ends up looking like is playing with children much younger than herself, because peers her age won’t include her. People ask, “Why doesn’t she play with kids her own age?” Quite simply, she’s never asked.
She has one friend in the area who also has Asperger’s. His parents have been incredibly kind and gracious. They love having our daughter over. Her quirkiness touches their hearts. Their son and our daughter share some of the same outdoorsy obsessions. Even so, this family has a life that expands far beyond their son’s friendship with our daughter. They can’t be her host every single day.
That leaves our girl here at home most of the time, crawling out of her very active skin. As a result, she goes from this neighbor to that looking for a playmate.
She is like a 10 year old locked in a 13 year old body.
This can create a tough situation. People wonder why a girl her age is playing with such little children. At the same time, there are assumptions made that she is more capable of maturity than she actually is. The hard work I have done with her on manners has paid off. However, it is a different story when it comes to her interaction with the kids while bad behavior is taking place. The way that school staff have responded to her makes her think that adults will not believe her when she goes to them with trouble. Even so, there is an expectation from adults that she will be the big kid, correcting the other children or reporting mischief when it takes place. In her Aspie world, that has been an extremely tough hurdle. I continually pull her aside, begging her to “go to a grown-up in charge” immediately when there is trouble with the other kids, or she will be blamed by the adults. I think she may hesitate in doing so because SHE wants the acceptance of other kids so badly.
I had hoped all of this would be different this summer. We found out one of her tomboyish friends from school only lives a few blocks away, and one other girl she claims to be friends with at school moved into our subdivision. She has repeatedly contacted them both to no avail. These two are nowhere to be found. No invitations or phone calls come to draw her into a happier circle.
The only visit she has had from other girls her age recently was when I was gone for our ministry’s mother’s retreat back in May. A few of her “friends” stopped by to do a “makeover,” decorating her face like a clown and parading her through the downtown of our small city. Our daughter thought it was a great, funny joke, never realizing these girls had set out to make a fool out of her. It broke my heart when my husband told me upon my return.
People keep encouraging me that it will get better as she gets older. The playing field levels out once they get to high school, they say. I’m praying it does because my heart might otherwise break from these disjointed social interactions.
What sustains me, and I pray will sustain her as she grows, is the knowledge that Jesus faced this type of alienation just when he so badly needed a friend. He knows this isolation and marginalization like no other. Because He suffered just like us, His care, concern, and friendship make all the difference. In fact, it makes Him the perfect Comforter when kids her own age fail to include her. Without Him, we would be utterly hopeless.