I'm Fucking Autism Aware Already, TYVM
Autism awareness month descends on us, as it has descended on us every April for the last 14 years (I assume we had autism awareness month back when Sam was first diagnosed. I was too caught up in the anxiety of the time to notice.) Scores of pictures of cute little kids will cross my Facebook feed. People will call me and email me asking if I've seen the latest treatment, cure, information.
And frankly, I'm most irritated.
Nathan has been having a very bad time. And, while we've had med reactions, and blamed it on colds or stomach bugs, the fact remains that he never seems to return to a pleasant baseline anymore. He spends his day rotating between near lethargy and aggression. We had to restrain him yesterday because he was trying to hit and bite us. He hit Sam on Sunday, his BSC on Monday, and his little brother Tuesday as we were telling him that Nathan was calm and unlikely to hit. My husband says that on average he is at an excellent level of emotional state. He is just never actually there at excellent. He just averages out to great.
We are thinking that Sam would do best in cyber school. Which means having him home all the time. He has a real tendency to disappear upstairs when he's home (can you blame him when he comes in for smacks on the head when he's down here?) and into his own little world of music, drawing, trivia on anything that interests him, and backwards videos. But classrooms are too big in high school. At school he disappears into his head and misses huge chunks of instructions. If we were in an urban area we'd seek out a private or specialty school. Public school is the only game in our town.
I've gotten sick of following pages of people with young kids. I feel irritation when they say their kids have 'severe autism.' And I wonder why, because I don't mind talking to them in person.
It's because I was there. I know that 'severe' or 'nonverbal' doesn't always hold over time. I know what it's like to have a child and have the stress and the hope of not knowing what the developmental trajectory is. I know what it's like when the hope that changes will come become disgust with the changes that do come. I'm not jealous. I wouldn't want to live those years again, especially if I knew what was in store for us.
We were once told that kids in a family tend to follow the same path. But that was obviously an erroneous prediction. Our kids are wildly disparate. One nonverbal boy has become fully integrated and very verbal. One boy started out very verbal. And one boy remains trapped, caught between his autism and bipolar. Moving forward by increments as adulthood creeps closer and closer.
And frankly, I'm most irritated.
Nathan has been having a very bad time. And, while we've had med reactions, and blamed it on colds or stomach bugs, the fact remains that he never seems to return to a pleasant baseline anymore. He spends his day rotating between near lethargy and aggression. We had to restrain him yesterday because he was trying to hit and bite us. He hit Sam on Sunday, his BSC on Monday, and his little brother Tuesday as we were telling him that Nathan was calm and unlikely to hit. My husband says that on average he is at an excellent level of emotional state. He is just never actually there at excellent. He just averages out to great.
We are thinking that Sam would do best in cyber school. Which means having him home all the time. He has a real tendency to disappear upstairs when he's home (can you blame him when he comes in for smacks on the head when he's down here?) and into his own little world of music, drawing, trivia on anything that interests him, and backwards videos. But classrooms are too big in high school. At school he disappears into his head and misses huge chunks of instructions. If we were in an urban area we'd seek out a private or specialty school. Public school is the only game in our town.
I've gotten sick of following pages of people with young kids. I feel irritation when they say their kids have 'severe autism.' And I wonder why, because I don't mind talking to them in person.
It's because I was there. I know that 'severe' or 'nonverbal' doesn't always hold over time. I know what it's like to have a child and have the stress and the hope of not knowing what the developmental trajectory is. I know what it's like when the hope that changes will come become disgust with the changes that do come. I'm not jealous. I wouldn't want to live those years again, especially if I knew what was in store for us.
We were once told that kids in a family tend to follow the same path. But that was obviously an erroneous prediction. Our kids are wildly disparate. One nonverbal boy has become fully integrated and very verbal. One boy started out very verbal. And one boy remains trapped, caught between his autism and bipolar. Moving forward by increments as adulthood creeps closer and closer.
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