Sunday, March 30, 2008

I'll show you crazy...


I have been thinking a lot about "Autism:The musical". When I watch things about autism, it becomes more about me, and my perceptions, and my son. I don't know if anyone else does this but whenever I see shows like this, I kind of look for answers. I know they are not there, but I can't help it. I want to see how parents are doing, how kids are doing, what school is like for them, do they have friends, are they 'ok' (whatever the hell that is). I get very emotionally wrapped up in it. I think overall the show focused a lot more on the parents, and I would have preferred more of the kids, but I do think it's an amazing program, and I thought that the woman running it put her heart and soul into it, and she was wonderful. Some of it made me really really sad. Listening to Wyatt talk about being bullied, made my heart ache. Watching Henry, who was so adorable, talk about his beloved dinosaurs, tugged at my heart as well. My husband and I chuckled when we heard him talk about reptiles and what they liked to eat, because he reminded us of bubs.
I was also struck by how 'weathered' all the parents were. When Adam's mom spoke about their marriage, it made me so mad. She said it was her job to make sure her son was 'kept out of an institution', and that their marriage suffered because of her devotion to her son. I think it struck a nerve with my husband and I. I also felt sorry for Lexi's mom. Sorry because she seemed to not be able to accept. Then I wonder about myself. For again, the whole thing is about me, right?

Ok, so now that I am in that mode of thinking, here's where the 'crazy' comes in. I take bubs to a 'kiddie kicks' class at a local gym. The owner of the place is one of bubs' home therapist. We love this woman. The place is great. It's open to all children and a lot of my friends take their kids there. I think it's common knowledge that the owner is also an aba therapist, so the 'nt parent's' are in general pretty cool. So we were there this Saturday for a special 'music and movement' class. Bubs was loving it. One of bubs' school mates was there, and I was hanging out with his mom. I thought it was pretty obvious that we were friendly. Now this little boy has some more visible affects of asd, he had a chewy tube around his neck to help him not chew on his shirt, and he was a little more on the active side. He is a sweetie and was having fun as well.

So I went to the bench to sit and watch my son have fun. Bubs tends to fly 'under the radar' these days, and I guess that's the reason this other mother of a neurotypical little girl felt comfortable saying what she said to me. She came and sat down on the bench next to me and was looking at the kids and said 'that boy is crazy, no?'. Ok, to give her the benefit of the doubt she was Russian, and it was obvious to me that English wasn't her first language. But the comment still had me steamed. I said 'NO, he is not Crazy, he has autism. Just like my son, they go to the same school'. I usually don't talk about bubs like this to total strangers. I feel like he has a right to privacy, and I tell only the people that need to know, like dentists and doctors and teachers (and sometimes even they don't need to know). Only when it helps him. But this just had the bile up in my throat, and made me angry and sad and proud of all the hard work that the boy and his mom endure. Ugh. I am sure she was just curious, but she could have used a better choice of words.

Ok, so how does this relate to the HBO show? I am not entirely sure, it's just that it's been on my mind. I am not sure I entirely understand autism, so how are people who are not directly affected by it going to get a grasp on it?


Drama Mama said...

I just feel sorry for that woman. She doesn't know what she is missing, no?

You did good.

Casdok said...

Yes i think the same.
Even after 19years i still dont compeletly understand autism.

Cyndi said...

So what did the Russian lady say after that???

I watched the Musical and cried during most of the documentary...maybe b/c I could see my 3 year old Matthew in so many of those kids, or myself in the moms, or b/c I had my period and have been an emotional wreck lately anyway. But even though I cried my eyes out, I stil loved it and hope that my MIL watches it so she can begin to understand what we all go through.

Anonymous said...

I loved the movie because I could think about my life. It is so rare I ever see any films that are even a tad bit like our lives. I could see a lot of our lives in that documentary. It is sad how tired all the moms and dads seemed. Many divorcing. Very sad. Not many marriages survive when there is a disabled child in the family. I have heard that stated as a fact many times.

I would be curious in knowing more about what keeps certain couples stronger while others fall apart under the stress.

I am sorry for that mom saying the 'crazy' comment. Maybe she was just trying to say he was happy and having fun? I used to have an Estonian friend and she was always mixing her words up.

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bonbon momma said...

Update: I spoke with my son's therapist, who owns the gym. I just wanted to let her know what 'went down'. I do think that it was just perhaps some 'curiosity' mixed in with some 'language/cultural barrier' issues and I truly think the intent was not to be hurtful. Hopefully she learned something from me, and she will look at things with a 'kinder gentler' eye.

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