








There are a lot of things that stink about Autism. I say that, and I don't even have the disorder. I can't imagine how much harder life would be if I was autistic myself.
One of the main things that stinks is how other people perceive autism. You would not believe the things I have heard, the things that people say to me, directly, to my face, occasionally even in front of my sweet son. People say that autism isn't real, that autism is over-diagnosed, that I shouldn't label him, that he's perfectly average and I'm a hypochondriac, that he can't possibly have autism because he doesn't flap his hands, that he has autism because I immunized him, or because he was adopted, or because my kids were born too close together, or because he eats gluten, or because he's allergic to potassium and stomach acid. (Stomach acid?) Those are the ones I have heard personally. Maybe there is truth to some of them. But probably not. I have discovered that I could waste his entire childhood away, chasing down other people's theories about why my son is the way he is.
Or, I can just enjoy him. I can laugh at all his charming idiosyncrasies and coach him through the tougher ones.
There is another group of people, though, who don't say stupid things about autism. The people at Harvey's school this year have changed our lives. They have cleaned up messes on my son that I wouldn't even want to clean up myself. They have voluntarily babysat 36 autistic children plus siblings on more than one occasion, so that us parents could have a date night.They have listened to my problems. They have scheduled his doctors appointments and administered his medicine and fed him applesauce. Those are not small things. They have helped my son without trying to fix my son. And they understand that there's a difference.
My parents have loved Harvey so much. mom helps me get him to doctors appointments, she taught him how to say "Drink. Please. Grandma." Now she's teaching him to read. My grandparents and siblings and my sister-in-law Lindsay have tended when I needed a break. They have taken the time to look Harvey in the eye and figure out all the things that make him tick and those efforts mean a lot to me.
This year, Harvey had a classmate who's father is a member of an up-and-coming local band called Neon Trees. The band agreed to do a benefit concert for the school, and a lot of people put in a lot of probably-unpaid time to make it happen. Timpview High School hosted the concert in their auditorium free of charge. My favorite religious band, The Lower Lights, volunteered to open. News and radio shows promoted the concert. Fifteen hundred people showed up.
There was seating reserved together for the children and their families. While we waited for the concert to start, we visited with the other parents. Mainly we chatted about life with autism, since that was the thing that had brought us all together. As I was talking to them, I felt a deep gratitude for the experiences that had brought me to that auditorium and the company of those parents. I think they must be among the most dedicated and remarkable parents I have ever met.
As the auditorium filled up I started to get a sense of how many people had come to help these kids. Probably most of them were there for the band, but not a single soul complained when the students crashed the stage. That evening gave my faith in humanity a solid boost. When I saw the sweat bead up on the lead-singers forehead, it warmed the cockles of my heart to know that that sweat was benefiting my kid, and thirty-five other children like him.
I won't pretend to have Autism-parenting figured out. I struggle to find the balance between seven-daily-hours of early intervention and letting my son have a childhood. Sometimes the line between normal kid behavior and autistic tendency is blurred.I have given up on trying to control the situation. I am flying-by-the-seat-of-my-pants and scared out of my mind. Maybe, fifteen years from now, this whole autism thing will turn out okay, and maybe it won't. Even if it doesn't, even if everything comes up worst-case-scenario, all of the big and little sacrifices that these people made will have made an immeasurable difference in my sons life and my own.
2 comments:
Well said!
Cally, you are amazing and your boys are sure lucky to have you!
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