At least once a week I find myself in a situation where I have to tell someone that "my son Max has autism". I used to dread it, the looks of pity, awkward break in conversation, and sudden inability to meet my gaze. I hated having people feeling sorry for me or telling me things like "God doesn't give you more than you can handle". Uh, yeah, sure...I don't think I "handled" it too well at 3am this morning when Max decided it was time to start the day, but whatever.
These days, when I tell someone about Max, I say it in a very matter of fact manner. I also make sure to say that he's attending senior kindergarten, is in therapy seven days a week, and is incredibly intelligent. I have no idea if someone is feeling sorry for me, but I don't really care. What I hope they take away from learning about Max is that autism is not hopeless. It's really hard, and a lot of the time it sucks big donkey bollocks, but the rewarding moments part the clouds and kiss you with a million rays of perfect sunlight. The steps forward are like winning an Olympic medal. We drink a lot of champagne.
Having a child with autism has changed me profoundly. What I value in people has changed. I have chosen my family over my career – I have changed professions, taken a pay cut, and now work from home. What stresses me out has changed. How I define a "good" day has changed. And I only cry when I'm happy, and even then I don't really cry, but tear up.
My son Max, he has autism. And he has the same potential your kid has, except he's a better reader than your kid, and better looking too. (Oops, did I say that out loud?) You don't need to feel sorry for him, or me. But some kindness and support would be wonderful.
Imagine when someone has to say, This is my partner max... he has autism. My wife's stuck with that one, and actually, it makes things easier for her. I don't feel sorry for max, or me, but I'm curious about how he's going to figure it all out... I'm sympathetic for your struggle to keep his stress reduced to the best level for him.
ReplyDelete3 of the children i know who have autism are named max, btw. And I have 4 faculty/grad students with autism associated with my lab. Sky's the limit.
I find the older my son gets, the easier it is to tell people he has autism. It pretty much rolls off the tongue now! The people that respond with pity are the responses I find most interesting....but over the years I've gone from letting this annoy me to laughing at it. That's just their ignorance of autism....and perhaps those people, who seem horrified at the thought of raising a child with autism just couldn't handle it...so that is their reality. I remember one particular woman, was just so sad to hear that my son had autism....she went on to tell me about her disability (scoliosis) and how when she feels bad for herself, she just thanks God that she doesn't have Autism, or Downs Syndrome, etc. I was speechless! She asked me how awful it must have been when I found out.....I just said that he's a very cool kid, and dealing with other people's reactions to him is much harder than dealing with his behaviours....I don't think she got it! LOL but I realized I'VE come very far!
ReplyDeletea very handsome little man indeed!
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