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msagaraOkay, I know I said I was going to head into kindergarten and grade one in this next post, but I really, really feel the need to address something here.
I consider all of these entries to be very specifically about my thoughts and process, very much like my posts about writing are. I once wrote a post comparing being a mother to being a writer, and I want to take a moment to do something similar, because I feel it's still true.
Every book is different. We can approach the writing of each book in a similar way to start, but we learn about the book as we go, and some books will require us to take risks with our process in ways that we hadn't previously.
Every child is also different--and people, for the most part, recognize this. But the recognition is often entirely intellectual; it's not visceral enough.
What I'm writing about in these posts about my ASD oldest son is my ASD oldest son and the context of his life. I am also writing about my parenting process, which, to be sure, is in part a response to my son as an individual. But it is my process. It's not your process, although there may be some overlap, because processes between parents do have some overlap.
I read a lot of posts about the writing process from a variety of different writers because I find it fascinating to see how they think and work--and on some occasions, they've said or done something that I'd never considered before that seems like it could be highly useful.
This could be something as simple as the use of a software program (Scrivener). It could be more complicated thoughts about world-building.
I'll try some of these things, and if they prove useful, I incorporate them into my own writing process; if they don't, I'll drop them. In no way, shape or form does this mean I am either writing someone else's books or totally abandoning a process which has worked for me; I know my process, and I'm looking for ways to improve it, insights to explain the muddier parts of it to myself.
But some books are romantic comedies and some books are Noir. Some are high tech philosophy and some are memoir. There are consequently some tools which are totally valid for one type of book that will destroy another, or at least make it much, much harder to complete.
When I read about process, the comparisons I make between mine and another writer's are fascinating to me--but they don't make me feel guilty, they don't make me feel inadequate, they don't make me question my career choices to date.
The results - the final book - might very well cause those responses in me. Or the book's sales. But similar process between writers (and there are some who are very very similar in their approach, although never completely the same) can produce wildly different books with wildly different success levels, and sometimes it's just a matter of the timing of publication--or the timing of birth. Thirty years ago, it would have been so much harder in every possible way to raise my son.
You can see where this is going, right?
These posts are about the parenting process. One of the reasons I write them is the hope that other parents will find them interesting; it's not the only reason, but it's a strong one. If other parents find parts of what I've written food for thought, if they want to take the bits and parts that seem like they could be useful and attempt to incorporate them into their own approach, I'm happy. But, conversely, if they don't, I'm not unhappy. We are approaching our children in different ways because they are different children.
Even if something I write makes another parent think, how they respond to those thoughts is entirely inherent in their own process, and in their own context.
What I don't want--viscerally--is that parents who are already struggling read these posts and use them to beat themselves up. Because that helps no one. I don't want these posts to be the cause of horrible regret or fuel in self-immolation.
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nerthus, I want specifically to address this last part to you.
Our situations are so very, very different. My son is ASD, yes. But he is not diabetic, he is not severely arthritic, he can walk, dress himself, brush his teeth; he is not in constant pain.
Did we realize my son was ASD?
No. We didn't. We didn't realize it until grade one. But this was in large part because the ASD behaviours that were more extreme - the stimming, for instance -- didn't occur at home. They occurred at school.
They occurred at school because they occurred whenever he wasn't in a safe space. He didn't understand other people, and he was now surrounded by twenty-five of them. He didn't understand the social interactions because he hadn't had the time to learn about twenty-five other people. The rules were different. The teachers were not his parents. The smells, the lights, the textures of various things were all different.
As school slowly evolved into a safe space for him, the most egregious and disruptive of his behaviours eroded. But whenever he felt the space wasn't safe, he reverted. It was hard.
Your daughter? Her whole body isn't, at the moment, a safe space. My son totally flipped out if he was in pain and he didn't understand the reason why. He could run full-tilt into a wall or the side of car and stand up and shake his head and then run off again; that was fine. But if he stood up, say, under a table, and hit his head -- screaming and tears.
Why? Fear. He didn't know what had hit him; he didn't know if it would keep hitting him; he didn't know if or how it would stop. If he backed into something, he did the same thing. When we pointed out the table top or the guide bar that he'd backed into, he'd instantly stop, because he would understand what had happened.
If he were in your daughter's position with the severe degenerative arthritis, he would regress enormously because, as I said, his entire body would cease to be a safe space. I'm not even sure how I would deal with that, because I have been enormously lucky and it hasn't been an issue; I think we would attempt to make completely certain that he understood all of what was happening, what was causing it, and what steps we were taking to attempt to contain it. Knowledge, for my son, helped him deal with fear, and it was the reason everything had to be explained about, well, everything.
Her total lack of desire to socialize right now isn't any failure on your part. Never think that. I can see my son, in her position, being exactly the same, and it would be hard to keep him balanced enough because the ASD fear-responses would be so obvious and so loud. My son would not be functioning at anywhere near a high level in her situation; we could be perfect parents for him (and we're not perfect), and it wouldn't make a difference.
If I were in your situation, I wouldn't force the issue of socialization because it wouldn't work for my son. Almost all of our parenting decisions stemmed from that: Will it work? I would spend what time and energy I had attempting to alleviate his pain, because until that was under control in a reliable way, he'd be so off-balance and so unhappy that he would have no energy for anything else. And from the sounds of it, that's exactly what you're doing.
I consider all of these entries to be very specifically about my thoughts and process, very much like my posts about writing are. I once wrote a post comparing being a mother to being a writer, and I want to take a moment to do something similar, because I feel it's still true.
Every book is different. We can approach the writing of each book in a similar way to start, but we learn about the book as we go, and some books will require us to take risks with our process in ways that we hadn't previously.
Every child is also different--and people, for the most part, recognize this. But the recognition is often entirely intellectual; it's not visceral enough.
What I'm writing about in these posts about my ASD oldest son is my ASD oldest son and the context of his life. I am also writing about my parenting process, which, to be sure, is in part a response to my son as an individual. But it is my process. It's not your process, although there may be some overlap, because processes between parents do have some overlap.
I read a lot of posts about the writing process from a variety of different writers because I find it fascinating to see how they think and work--and on some occasions, they've said or done something that I'd never considered before that seems like it could be highly useful.
This could be something as simple as the use of a software program (Scrivener). It could be more complicated thoughts about world-building.
I'll try some of these things, and if they prove useful, I incorporate them into my own writing process; if they don't, I'll drop them. In no way, shape or form does this mean I am either writing someone else's books or totally abandoning a process which has worked for me; I know my process, and I'm looking for ways to improve it, insights to explain the muddier parts of it to myself.
But some books are romantic comedies and some books are Noir. Some are high tech philosophy and some are memoir. There are consequently some tools which are totally valid for one type of book that will destroy another, or at least make it much, much harder to complete.
When I read about process, the comparisons I make between mine and another writer's are fascinating to me--but they don't make me feel guilty, they don't make me feel inadequate, they don't make me question my career choices to date.
The results - the final book - might very well cause those responses in me. Or the book's sales. But similar process between writers (and there are some who are very very similar in their approach, although never completely the same) can produce wildly different books with wildly different success levels, and sometimes it's just a matter of the timing of publication--or the timing of birth. Thirty years ago, it would have been so much harder in every possible way to raise my son.
You can see where this is going, right?
These posts are about the parenting process. One of the reasons I write them is the hope that other parents will find them interesting; it's not the only reason, but it's a strong one. If other parents find parts of what I've written food for thought, if they want to take the bits and parts that seem like they could be useful and attempt to incorporate them into their own approach, I'm happy. But, conversely, if they don't, I'm not unhappy. We are approaching our children in different ways because they are different children.
Even if something I write makes another parent think, how they respond to those thoughts is entirely inherent in their own process, and in their own context.
What I don't want--viscerally--is that parents who are already struggling read these posts and use them to beat themselves up. Because that helps no one. I don't want these posts to be the cause of horrible regret or fuel in self-immolation.
nerthus, I want specifically to address this last part to you.Our situations are so very, very different. My son is ASD, yes. But he is not diabetic, he is not severely arthritic, he can walk, dress himself, brush his teeth; he is not in constant pain.
Did we realize my son was ASD?
No. We didn't. We didn't realize it until grade one. But this was in large part because the ASD behaviours that were more extreme - the stimming, for instance -- didn't occur at home. They occurred at school.
They occurred at school because they occurred whenever he wasn't in a safe space. He didn't understand other people, and he was now surrounded by twenty-five of them. He didn't understand the social interactions because he hadn't had the time to learn about twenty-five other people. The rules were different. The teachers were not his parents. The smells, the lights, the textures of various things were all different.
As school slowly evolved into a safe space for him, the most egregious and disruptive of his behaviours eroded. But whenever he felt the space wasn't safe, he reverted. It was hard.
Your daughter? Her whole body isn't, at the moment, a safe space. My son totally flipped out if he was in pain and he didn't understand the reason why. He could run full-tilt into a wall or the side of car and stand up and shake his head and then run off again; that was fine. But if he stood up, say, under a table, and hit his head -- screaming and tears.
Why? Fear. He didn't know what had hit him; he didn't know if it would keep hitting him; he didn't know if or how it would stop. If he backed into something, he did the same thing. When we pointed out the table top or the guide bar that he'd backed into, he'd instantly stop, because he would understand what had happened.
If he were in your daughter's position with the severe degenerative arthritis, he would regress enormously because, as I said, his entire body would cease to be a safe space. I'm not even sure how I would deal with that, because I have been enormously lucky and it hasn't been an issue; I think we would attempt to make completely certain that he understood all of what was happening, what was causing it, and what steps we were taking to attempt to contain it. Knowledge, for my son, helped him deal with fear, and it was the reason everything had to be explained about, well, everything.
Her total lack of desire to socialize right now isn't any failure on your part. Never think that. I can see my son, in her position, being exactly the same, and it would be hard to keep him balanced enough because the ASD fear-responses would be so obvious and so loud. My son would not be functioning at anywhere near a high level in her situation; we could be perfect parents for him (and we're not perfect), and it wouldn't make a difference.
If I were in your situation, I wouldn't force the issue of socialization because it wouldn't work for my son. Almost all of our parenting decisions stemmed from that: Will it work? I would spend what time and energy I had attempting to alleviate his pain, because until that was under control in a reliable way, he'd be so off-balance and so unhappy that he would have no energy for anything else. And from the sounds of it, that's exactly what you're doing.