Metamorphosis
Jan. 13th, 2015 09:33 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png)
I knew this was coming.
From the moment of Luke's diagnosis I started to see it in the distance, a grim, leering specter crouched on the threshold of adolescence. Puberty.
I read the personal accounts. "Our child was the sweetest, gentlest little darling until he reached his teens. Then he transformed into a violent moody teen we hardly recognized." Hormonal changes, physical transitions and weird new feelings and sensations are hard enough for a neurotypical child to navigate, let alone an autistic one. I knew it was coming. But what could I do? Give Luke every service available and hope he'd have enough tools to cope with it when it came.
Last month we had his IEP meeting, one of the three-year evaluations complete with a thorough analysis of his progress compared to past evaluations. It was incredibly heartening. He had gained skills by the boatload, and continued to excel. He was picking up a few verbalizations. He loved school. He would greet everyone in the hallways with a wave and his version of "Hi." His negative episodes had decreased. We sat at a table surrounded by helpful, optimistic experts, and it gave me so much hope.
Now he's in his birthday month. He turns twelve in just a few weeks. And like brutal, unforgiving clockwork, the changes have begun. Today at school he had eight aggressive episodes, requiring physical restraint. He was kicking other students. He was even unbuckling himself on the bus on the way to school so he could kick people. This is a new high, but he's had at least two episodes every day since we started up school again last week. At home, the kicking continues, as well as a compulsive need to knock things over and make huge messes. We've always planned on getting bunk beds for him and Ryan once Luke was too big to share a bed with him, but now that's become urgent. The hours after bedtime are nightmarish. Either Luke sneaks out of bed and trashes something downstairs so we have to get up and stop him, or he hurts Ryan so we have to separate them and find some temporary arrangement that won't result in total sleep deprivation for everyone. Most days while the kids are at school, I end up spending the afternoon napping. It's the only way I can function when they get home.
We can assume Luke isn't malicious. I don't know how much he understands that other people can get hurt just like he can. He can't even always process his own pain. Sometimes we'll find bruises days after he got them and wonder how it happened, since he never gave any direct indication of being hurt. He gets violent because - ? He's confused? Frustrated? Hurt? Angry? Sad? Whatever it is, he can't communicate it. That's probably the actual center of his aggressive maelstroms. The agony of not being able to express or process what's happening to him.
We can find more communication solutions for him. We can keep up his intensive therapies and assessments and keep in touch with his team and use every support system available to us. It's one of the new goals we made for his IEP, in fact: "Help Luke cope with puberty." But a lot of it ends up being like throwing stuff at a wall and hoping something sticks. There's no set solution, no guarantees. There will be a lot of gritting our teeth and just enduring.
It might not even be puberty. That's how much guesswork is involved here. It could be the week we spent in Pennsylvania, a drastic change in routine compounded by sharing the house with between thirteen and fifteen people. He had fun, but by the end he was so out-of-whack. We all were. Then the weather is too cold for him to run around outside, and who knows what other triggers might be affecting him? But he's never had a reaction this drastic to routine changes or winter weather before. This is a new record, and it's not a record I ever hoped he would set.
I saw something on Facebook today about how a potato gets soft in boiling water, while an egg gets hard; so it's not what happens to you, but what you're made of. And the first thing I thought (after "wow, that's a vast oversimplification of various chemical and physical processes") was that I am a soggy potato. And I wish someone would just scoop me out of the water before I'm completely dissolved.
I don't lack support. I have lots of wonderful people willing to help, from family to church members as well as Luke's large team of teachers and social workers. The thing is, I'm not really sure what kind of help I want, and I've certainly never been good at asking for it. A lot of times the well-meaning offers and suggestions just make me miserable, which is my own problem, not theirs. I guess it'd be nice to have a second adult body around when Luke's getting really physically demanding. Maybe I also just have some kind of mopey need to feel validated, to have people say, "Yeah, that sounds really really rough. You must be exhausted. You got a lot more than you planned on, parenting-wise." I don't know.
I had the buffoonery to crack my knee into a toy on the stairs today (which I had put there for the express purpose of NOT walking into it again) and so chasing Luke around was significantly harder. Emma and Ryan spent most of the afternoon watching Netflix, hearing the occasional scream (mine) from downstairs as Luke knocked down yet another cabinet before I could stop him. My husband came home to find me sobbing uncontrollably while holding an ice-pack to my knee. Luke, at that point, was calm. That's how it always seems to happen.
Every day hasn't been like this. Not so far. I fear it's going to get worse before it gets better. I fear it won't ever get better. I fear I'm going to be declared incompetent. I hope for something better, but a lot of the time, that hope is only a flickering little candle, and it doesn't do much to push away the dark. Maybe Luke will come out of this a semi-functional adult. But what will I become? I hope it's not potato water.
From the moment of Luke's diagnosis I started to see it in the distance, a grim, leering specter crouched on the threshold of adolescence. Puberty.
I read the personal accounts. "Our child was the sweetest, gentlest little darling until he reached his teens. Then he transformed into a violent moody teen we hardly recognized." Hormonal changes, physical transitions and weird new feelings and sensations are hard enough for a neurotypical child to navigate, let alone an autistic one. I knew it was coming. But what could I do? Give Luke every service available and hope he'd have enough tools to cope with it when it came.
Last month we had his IEP meeting, one of the three-year evaluations complete with a thorough analysis of his progress compared to past evaluations. It was incredibly heartening. He had gained skills by the boatload, and continued to excel. He was picking up a few verbalizations. He loved school. He would greet everyone in the hallways with a wave and his version of "Hi." His negative episodes had decreased. We sat at a table surrounded by helpful, optimistic experts, and it gave me so much hope.
Now he's in his birthday month. He turns twelve in just a few weeks. And like brutal, unforgiving clockwork, the changes have begun. Today at school he had eight aggressive episodes, requiring physical restraint. He was kicking other students. He was even unbuckling himself on the bus on the way to school so he could kick people. This is a new high, but he's had at least two episodes every day since we started up school again last week. At home, the kicking continues, as well as a compulsive need to knock things over and make huge messes. We've always planned on getting bunk beds for him and Ryan once Luke was too big to share a bed with him, but now that's become urgent. The hours after bedtime are nightmarish. Either Luke sneaks out of bed and trashes something downstairs so we have to get up and stop him, or he hurts Ryan so we have to separate them and find some temporary arrangement that won't result in total sleep deprivation for everyone. Most days while the kids are at school, I end up spending the afternoon napping. It's the only way I can function when they get home.
We can assume Luke isn't malicious. I don't know how much he understands that other people can get hurt just like he can. He can't even always process his own pain. Sometimes we'll find bruises days after he got them and wonder how it happened, since he never gave any direct indication of being hurt. He gets violent because - ? He's confused? Frustrated? Hurt? Angry? Sad? Whatever it is, he can't communicate it. That's probably the actual center of his aggressive maelstroms. The agony of not being able to express or process what's happening to him.
We can find more communication solutions for him. We can keep up his intensive therapies and assessments and keep in touch with his team and use every support system available to us. It's one of the new goals we made for his IEP, in fact: "Help Luke cope with puberty." But a lot of it ends up being like throwing stuff at a wall and hoping something sticks. There's no set solution, no guarantees. There will be a lot of gritting our teeth and just enduring.
It might not even be puberty. That's how much guesswork is involved here. It could be the week we spent in Pennsylvania, a drastic change in routine compounded by sharing the house with between thirteen and fifteen people. He had fun, but by the end he was so out-of-whack. We all were. Then the weather is too cold for him to run around outside, and who knows what other triggers might be affecting him? But he's never had a reaction this drastic to routine changes or winter weather before. This is a new record, and it's not a record I ever hoped he would set.
I saw something on Facebook today about how a potato gets soft in boiling water, while an egg gets hard; so it's not what happens to you, but what you're made of. And the first thing I thought (after "wow, that's a vast oversimplification of various chemical and physical processes") was that I am a soggy potato. And I wish someone would just scoop me out of the water before I'm completely dissolved.
I don't lack support. I have lots of wonderful people willing to help, from family to church members as well as Luke's large team of teachers and social workers. The thing is, I'm not really sure what kind of help I want, and I've certainly never been good at asking for it. A lot of times the well-meaning offers and suggestions just make me miserable, which is my own problem, not theirs. I guess it'd be nice to have a second adult body around when Luke's getting really physically demanding. Maybe I also just have some kind of mopey need to feel validated, to have people say, "Yeah, that sounds really really rough. You must be exhausted. You got a lot more than you planned on, parenting-wise." I don't know.
I had the buffoonery to crack my knee into a toy on the stairs today (which I had put there for the express purpose of NOT walking into it again) and so chasing Luke around was significantly harder. Emma and Ryan spent most of the afternoon watching Netflix, hearing the occasional scream (mine) from downstairs as Luke knocked down yet another cabinet before I could stop him. My husband came home to find me sobbing uncontrollably while holding an ice-pack to my knee. Luke, at that point, was calm. That's how it always seems to happen.
Every day hasn't been like this. Not so far. I fear it's going to get worse before it gets better. I fear it won't ever get better. I fear I'm going to be declared incompetent. I hope for something better, but a lot of the time, that hope is only a flickering little candle, and it doesn't do much to push away the dark. Maybe Luke will come out of this a semi-functional adult. But what will I become? I hope it's not potato water.