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Before I continue, I want to offer a PSA. The next few posts will likely be about having an ASD (Autistic Spectrum Disorder) child in a system in which a new principal was hired to completely squelch all problems with bullying. She was enormously successful, and in part I'm aware that my son's school experience was radically different from the experiences of many, many ASD children entirely because of the way she ran her school, dealt with the parents of her children, and supported her teachers.

But I can understand that as this isn't what I normally post, people might have zero interest in it, and for those new to this LJ because of the previous posts on reviewing and entitlement, I do apologize in advance.
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There are reasons my son had social difficulty. Understand that everything I'm saying at the moment we learned by trial and error and a lot of observation, because that's what we had at the time. At a certain stage of development, children really do think their parents know everything. This ends sometime between the ages of two and three for most neurotypical children, and at three and a half most children understand that this is not, in fact, the case.

My son did not develop this awareness until he was seven, going on eight.
because I want to make clear that my son's ASD was not mildCollapse )

There are many other little things, as well, but I think that's enough to give you an idea of how difficult it would be for normative children--even the nice ones--to accept or understand him. And yet, in the end, they did.

Comments

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spiffikins
Oct. 15th, 2010 05:06 am (UTC)
My youngest brother was diagnosed with ADHD/PDD - so much of this is so familiar. From a very early age, it just Did Not Work to say "don't do that" - you always had to come up with a reason why not - and explain *everything* - and if you couldn't explain it in a way that made sense to him, he wasn't going to listen to you.

He also had a very strong sense of fairness - if he got into an altercation at school with another kid - he didn't mind getting in trouble as long as the other kid *also* got in trouble.

dedra
Oct. 15th, 2010 05:47 am (UTC)
I really think that some of the other posters have the right idea. You should write a book about this. Just reading it has given me so much more perspective on a variety of levels and if there is one parent out there that it helps, wouldn't it be worth it?

Consider it. You might be surprised how much creedance you have, having lived it. You don't have to be a psychologist or medical professional to write about something that is so very influential on your live (as well as many others' lives) and it could help a child.

kchew
Oct. 15th, 2010 06:25 am (UTC)
Call it a memoir and you don't need to worry about credentials. The point of a memoir is to communicate personal experience, and not to assert cred, although cred can be claimed through experience.
zingerella
Oct. 15th, 2010 01:22 pm (UTC)
My thinking exactly. If you write "this is how we live" rather than "this is what you should do," you're in an entirely different section of the bookstore and you need to be an expert only on what you did.

Which you are. You are, in fact, the world's foremost expert on that.
uberta
Oct. 15th, 2010 03:24 pm (UTC)
Oh, I absolutely agree with this comment.
artbeco
Oct. 15th, 2010 06:30 am (UTC)
What strikes me is how much your coping mechanisms work for 'normal' kids as well; perhaps especially active curious boys (like mine). I don't think my guys fall on the spectrum, though some well-meaning adults have tried to tell me they needed medication 'to calm them down'. But your listening to your son, interpreting how he views the world and your dealings with teachers and other adults and kids is really very valuable for anybody with kids.

I love that you went ahead and encouraged him to talk about whatever he was interested in. I can't imagine trying to squelch that in a child that needs encouragement to express what they're thinking, and after all, don't they all really need all the encouragement they can get to talk about what they're thinking?

I like the idea of a book as well- whether you consider that you have the 'right' credentials or not, you have more than enough of the other parts to make an exceptional, immensely helpful book about how your family coped and allowed your son to thrive. And honestly, that in-the-trenches experience combined with your writing abilities would make a much better, more accessible read for any parent than an academic approach would.

And thanks again for letting us read all of your thoughts here. Odd how intensely personal it all is, and yet so universal, isn't it?
jonquil
Oct. 18th, 2010 05:13 pm (UTC)
My son is not ASD, but I found it very important to listen to hours and hours and hours of first manga and anime and later videogames because I wanted him to be *heard*. This was adaptive behavior; he didn't talk much unless he was talking about something really important to him, and if it was videogames, so be it.
mizkit
Oct. 15th, 2010 08:18 am (UTC)
These really are completely fascinating posts. Thanks for telling this story.
brownnicky
Oct. 15th, 2010 08:21 am (UTC)
This is fascinating. I don't know why you couldn't get a book about this published. There are many children with variants of these difficulties and your insights might help.
A friend of mine with two quite severely ASD kids published this. http://www.amazon.co.uk/George-Sam-Autism-Charlotte-Moore/dp/067091441X
She is a writer and journalist but not a medical specialist - she just wrote a very perceptive book about her own children which I know has been enormously helpful to other parents. Maybe you could do the same.
la_marquise_de_
Oct. 15th, 2010 11:28 am (UTC)
You're amazing. You and your husband and both sons.
salsdecember
Oct. 15th, 2010 03:28 pm (UTC)
My younger cousin Mikey also is diagnosed with ASD and he also has a sensory problem, but with lights. He is attracted to bright shiny things and will scream if the lights suddenly change. When he would come over to visit, he would A-line it to my room and stay in there for hours playing with my things until it was time to leave. While this was a rather annoying and a breach of personal space when I was a younger girl, we all quickly realized that this was probably for the best if just to keep Mikey calm.

After a while I picked up that the reason he liked my room so much was that it had the biggest windows, vaulted ceilings and got the best natural light during the day. Plus I had a lot of costume jewelry hanging about, a TV, and bright green pillows which he wouldn't let go of. He liked the bright colors.

So eventually we started turning all the lights on when he came over, even during the day. And at night we would light up the fire pit outside. It worked! He eventually started hanging out in the living room with other people.
estara
Oct. 15th, 2010 06:51 pm (UTC)
First, thanks again for continuing this. I don't have children of my own but I teach at a boys-only school and insight into your situation so well explained helps me to think about behaviour I have seen or things I could do in my own school situation.

Secondly, while I personally like the book idea people are encouraging you to write, I get worried that this will make you feel too much pressure what with the previous writing commitments you have and how you really don't like not being on time with a deadline.

So, I had a thought about a compromise - if you collected your posts into a an .epub with the free Sigil epub editor you could offer that for download for free - or you could upload the a .doc file to something like Lulu.com and people who wanted to have the posts in print could have them printed-on-demand.

But, you know, in the end I'm thankful for the posts you posted and if you can't post any more in this vein for whatever reason, I still got to read this (and I can collect these posts into my own .epub file if I want to, and read it on my ereader to remind me).

My two cents ^^.
jonquil
Oct. 18th, 2010 05:07 pm (UTC)
I am really, really struck by how thoughtful and observant a parent you were/are. It's not just that you loved your child -- almost everybody does that -- but that you worked hard to understand what motivated him, rather than what you wanted him to be, and how to make him successful at navigating the world by framing it within his motivations. That's really rare.
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