Sunday, September 17, 2006

The third act on This American Life yesterday presented the reality of autism and the family.
The subject is of great interest to me in that I majored and taught in special education in my life before children and remain fascinated with the potential of people with handicaps.

The family openly spoke about life with their autistic son Benjamin, whose autism must have reached "severe" on the broad spectrum. The father explained his son as a giant with a toddler's brain. The family referred to their bruised and scratched skin from Ben's violent outbursts as "benjuries". The mother was quite frank about the utter rudeness of complete strangers toward them in public.

I contrasted Ben's story to a little guy with autism I am friends with at church. He's been in my Sunday School class for the last two years and now I am his official one on one "hang out" buddy in his new class. In contrast to the many intensely frustrated people with autism I've met over the years, this boy is miraculously and remarkably joyful.

Dave, the person with the most severe case of autism I've met, lived in a group home where I worked when I was in college. Even sedated on psychotrophic drugs, Dave was horribly self abusive. He obsessed over Mountain Dew to the point that we installed alarms on all doors as he'd run to the nearest convenience store a mile away and guzzle down as many two liters as possible before anyone knew he was missing. He walked around signing the word "pop" constantly as he had no speech and would sometimes begin a destructive pattern of behavior when he didn't get Mountain Dew. He'd fall to his knees on the blue shag living room carpet, rub a circle with his thin hand until his palm became bloody. His body perspiration and odor released and angry grunting built to screaming. Then begin beating himself in the head with his hands leaving knots and bruises. Eventually he wore a helmet to prevent brain damage. Eventually, Dave was moved to an institution.

When I hypothetically consider if I could handle Dave as a member of my household now, I seriously doubt my capabilities. Each day, everything would revolve around his urgent needs and the rest of the family would be shoved to the back of the line. Every person would be forced into the survival mode.

From my previous experience with Dave, I completely understand Ben's family's eventual choice to place him in a structured program away from home. They believe he is happy there.

I do not know Dave's status these days, but when I get to heaven, I imagine a conversation with him and the others who could not find paths for communication with me when I worked in their home. Will Dave say, "True, you were off the mark. I was really thinking...", "Why didn't you ever...", or "About the times I'd press on your throat till you awoke simultaneously screaming and gasping for air on your overnight shifts- I'm sorry about that."?


truth said...

Thanks for sharing. My dh gets real upset when I tell him what my grandson wants. He often laughs and tells me I could not possibly interpret what he is trying to say. And as you mentioned, I will at some point, hopefully before heaven and find out what he is really trying to say.

truevyne said...

Dear Truth,
Have you ever had dreams where your grandson talks? I have and those dreams are so interesting.
Won't that be quite the day, when people we love have the words to tell us what they have wanted to for all these years? I just hope it's full of grace all around.

truth said...

Yes, I have. Sometimes I've woken up thinking it was real and expecting things to be different. Sigh.