xmlns:og='http://ogp.me/ns#' Yeah. Good Times.: Musings on Autism

Saturday, November 13, 2010

Musings on Autism

I got to hang out alone with Child 1 today; hubs was working and Child 2 had a playdate, and I was once again struck at how different these two children of mine are, and what a completely different experience it is to just hang out with the one. And I have marveled hundreds of times at the irony that my child with autism is so much easier than my child without, especially now that he's getting older. He's completely lost that autistic rigidity he used to have; it used to be that he would freak out if I so much as pulled out of the driveway and turned a different direction than he was expecting, but now he just asks "why did you turn right instead of left?" and will accept my answer and move on. Child 2 would argue, loudly, with me about it until I screamed at him to shut up (I don't really do that. Or do I?) But Child 1 talks so softly, I'm always having to tell him to speak louder because I can't hear him. And although he spends a good deal of his "off time" making noises that sound like a BART train, accompanied by various other vocal stims, he's really very quiet. And so mellow, and timid, and sweet, and of course insanely beautiful and awesome.

I used to think that his mellowness was a result of the autism, which causes him to withdraw to block out the external stimuli that his brain has trouble processing, but now I'm not so convinced of that. He's getting older, he's obviously having an easier time with the sensory issues, but he's still so quiet and calm all the time, so now I'm pretty sure that's just how he is; he's a calm and mellow little dude, a lot like his Dad, actually. So, I was pondering this issue earlier and, for the zillionth time I wondered what kind of adult he would be. How would he make his way in the world? He has obvious differences, he's super calm and mellow and sweet and the world is a cruel, harsh place. How will he be as a teenager? As an adult? Will he be able to figure it out? Will he be happy?

I've always said that all I ever wanted for my kids was for them to be happy, and adding this idea to my ponderings, I was reminded of something my brother once asked me. A toddling pre-walking Child 1 and I were hanging out at his house in the city a few months before he died, and I mentioned this idea, and my brother asked "what if what really made him happy was to be a janitor? Would you be okay with that?" Damn with the hard questions, dude. My honest answer was no, because I think he could do better, and how could being a janitor make you happy? (apologies to all the janitors and janitor's families that I'm currently insulting) to which my brother responded that if I really wanted him to be happy I would need to get rid of my preconceived ideas about what makes a person happy and be prepared to accept that my child might have his own ideas about happiness, even if it meant something I didn't agree with. (Yeah. I miss him. Stupid fucking cancer.)

And, I thought about this while I watched Child 1 watching his beloved YouTube videos of BART trains and I thought: running back and forth flapping his hands, whispering about BART trains and making noises that sound like BART trains are what make him happy; as odd as that sounds to somebody without autism, it's just how it is. And he's going to carry these preferences with him into adulthood, and I need to be prepared to reject my own ideas about what makes for happiness and accept whatever he comes up with, because, more than anything, I want my kids to be happy.


Big Daddy Autism said...

My son is never going to live independently. He will not drive. He will probably reside with us forever. His choices will, as they are now, be limited. But he is happy. And I cannot, under any circumstances, see myself doing anything to derail him from the path which brings him the most joy in life. I think, the acceptance you mention, is more for my happiness than his.

Once I accepted the boy for who he is and what he may become rather than trying in vain to "fix" him, my life got so much better. He will be what he will be.

Considering his gross and fine motor skills and his inability to clean the smallest of messes, I'm thinking janitor is a long shot. But if that's what he turned out to be - I would be thrilled.

What I'm trying, ineloquently to say is, I agree with you but I think the acceptance = happiness equation in this scenario is more for us than for them.

Good, thought provoking post.

jillsmo said...

I completely agree and I think that was my brother's point that acceptance=happiness is more for me than for him, although that conversation took place pre-diagnosis.

Lynn said...

Your brother was very wise. I feel like happy is a great goal, but because she is an only child and I'm crazy old and letting my anxiety take years off of my life, I worry about her taking care of herself or who's gonna take care of her after I'm gone. I'd rather she was safe and sound with a roof over head even if she wasn't 100% happy....but hopefully those things aren't mutually exclusive.

tulpen said...

First. Cancer sucks balls. Crying for your brother.

I try not to try to peek into my son's future. Happy is the only thing I care to imagine, whatever form that takes.

Dani G said...

Fuck cancer. A million times.

Acceptance IS the answer. But it comes in stages for me. I accept that this is what we have to deal/live with. But, if what it is like today is what it'd be like forever... That's a lot harder to accept. I do still want her to make more and more progress. Like, Lynn, I only have the one kiddo. Plus, I have no family within 2000 miles (by air!), so I might need to train my bird to change MY diapers some day!!
I find that when she's doing well, I just want her to be happy. When she's going through a rough period, that's harder to feel. That's when I just want her to be better. It's a roller coaster most days. Always with the up and down, up and down. Stop this ride- I want OFF!!!!

Must be really interesting to see the differences between your two kids. Sometimes (often) I wish little bird had a sibling so I could have help (and a caretaker one day!!)....

Happy13 said...

I too think cancer needs to bend over. It's fucking with our family right now.

I think we may have the same children. Xander is MUCH easier to deal with than Spencer. I always say Xander is Andy w/autism and Spencer is me with more enthusiasm.

I try not to think too much about the future; however, Andy and I always talk about it with Xander living with us. Our hope is that Spencer will want to advocate for his big brother as he gets older; though, I don't want him to ever feel pushed into it. It needs to be his choice so he doesn't bear resentment.

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