Monday, February 26, 2007

It's not "all about us"...

The last 2 days of the school break were a bit busier than the week itself, with friends visiting both days, but a nice end nonetheless. Brendan had another school friend over (for the first time) on Saturday afternoon & they had a very nice time. They went outside with Charlie twice, once sledding & once to the snow fort down the road. The inside time was spent playing with legos & watching excerpts from "It's a Mad, Mad, Mad, Mad World" accompanied by much giggling. Sunday we had grown-up friends from church over to lunch & Brendan spent some of the time watching the new Pokemon dvd that he'd (finally) earned with his behavioural chart & playing his new Advernture Quest game, Dragon Fable, while we visited- so it was a win-win :) He was also quite friendly over lunch & talked about our upcoming trip to Japan with our friends. I was happy to see him so relaxed in the afternoon because he'd had major tic trouble at church that morning. There was a special lunch being prepared (we hadn't know about it when we made other lunch plans, but it turned out for the best...) that day & Brendan found his Sunday morning session of Adventure Quest at church (while Charlie & I were in choir practise) horribly disrupted by the smell of meat cooking. Sigh. By them time the service started he was very upset & at first he wouldn't even read the book I keep in my church tote bag, which is what he usually does until we all leave for Sunday School (the kids & RE teachers are in the first part of the service). I finally conviced him to read & that distracted him very nicely, but when he got to Sunday School he didn't want to stop reading & go into his classroom. I didn't rrealise what was going on until my class came out in the hall to put some stuff on the bulletin board & I found one of his teachers hovering between him, sitting in a chair & reading on the landing leading to the RE wing, & his classroom down the hall. I asked Brendan what was up & he said that every time he put the book down he remembered the meat cooking, so I told his teacher that he'd come with my class (I teach Sr. High) & my kids were fine with that, so he sat & read the rest of the time. He smelled the meat as soon as we got downstairs, so we had to hustle a gagging child out of the side door, to a few puzzled stares (new folks who don't know us :). He was very angry on the way to the car, about how people killed those animals & were going to eat them, but calmed down once we headed for home, asking if we could go to the asian restaurant that we've been visiting the past few Sundays for lunch (at his repeated request). We explained again that friends were coming over, but held open the possibility of going out to dinner. And then we got home, & friends came over, & Brendan was fine.

I wasn't really fine, unfortunately, having woken-up with some sort of sinus thing that had my nose running like a faucet. By the time our friends left my head felt as though it was going to explode, so I took more tylenol & laid down on the sofa, while the guys withdrew to the second floor to play legos & watch some videos. After about an hour & a half I felt well enough to sit up & even eat some dinner (Brendan very sweetly didn't even mention going out...), which was a real blessing. After Brendan had a bath we all watched 3 episodes of Pee Wee's playhouse (he'd wanted to watch 3 before bedtime, so we calculated together when we'd have to start, & by extensionn when he'd have to have his bath, so we'd be done by bedtime). He was a bit grumbly about going back to school in the morning, but Pee Wee cheered him up :) He fell to sleep very well- so far there's been no noticeable effect of the reduced seroquel dosage on his falling asleep...

This morning I did wonder if he wasn't feeling the effects, though. He was predictably grumbly, moany, bad-tempered before breakfast, but half-way through breakfast he had a terrible tic that had him red-faced & gasping for breath. I felt really awful for him. He ran for the sofa & as I sat with him he was able to relax & tell me that the tic was related to the ones yesterday about people cooking & eating meat. He said that the tic made him feel that he shouldn't be alive... but he did tell me that it was ok to eat plants (whew!). I reminded him of how the american indians used to thank the spirits of the plants & animals they ate, & were acutely aware that they were part of a cycle of life & that they needed to respect it. We talked about how we've started to say "ittadakimasu" (what the japanese say) as a grace before eating & how that way we give thanks everything that goes into the growing & making of the food. When he seemed recovered from the tic I asked him if he wanted his breakfast & he asked if he could eat on the sofa. I told him he could if he was careful, & brought it out to him. The rest of the morning was fine & we got off to school nearly on time (although the laundry had to wait until I got home). He was in a good mood when we got to school & was sitting at his desk doing morning work when I left. He did ask if he could call me if he needed me & I told him he could, then explained that I had one appontment where I'd be on the cell phone (just for emergencies), so that he wouldn't worry if he called & I wasn't home. So far, no call...

Over the weekend I witnessed & participated in a discussion of sorts in Kristina's Autism Vox site. At last count there were 54 comments on this particular entry, that was about Amanda Baggs being interviewed on CNN. One "participant" (I must loosely define participant here, since he really wasn't doing much taking-in of what others were saying, in my opinion) turned things to a back-&-forth, us-vs-them exchange about "curing" autism, essentially telling folks that if they weren't in the curebie camp they were "in the way". I found myself increasingly disturbed by the tone of this parent's comments & even made a second comment to the effect of "who told you a cure exists?". Rochelle made a heroic attempt to bring him into line, explaining that it's common courtesy to discover the general outlook of the site at which you are commenting before disrupting the flow with ignorant remarks, but he didn't get it :( At one point I found myself hugging Charlie in the kitchen, while describing it all, really put-off by the obnoxious sense of entitlement that emanates from some of these hard-core cure types. Charlie just nodded agreement.

Up till now I have felt very wary of taking on this sort of thing in the blog. I cannot know or understand how another person feels & I'm acutely aware of it, so I try to be careful of others' feelings & perspectives about autism in my life & in my writing. But reading what that one person seemed to think was unflagging devotion to their cause made me feel as though a line had been crossed & I had to say something. And that something is this:

"It's not all about us!"

In other words, autism is not about the parents, & unflagging devotion, when it is disrespectful & thoughtless, is just plain wrong. I am the parent of an autistic child, who will someday be an autistic adult, & I do have have feelings about the process of raising an autistic person in a society that has a long way to go in terms of accomodation & acceptance. It's natural... I'm a person who is learning & growing & trying my best. I haven't always done a very good job of managing my feelings about the process... But the whole process is not about me or my feelings. It's about my son. His feeling are really important. His feeling competent & good about himself is essential. If I feel bad about him, how can he feel good about himself? This is my basic problem with those who feel they can "hate autism" but love their child. I just don't see how this is possible... Kids are smart & verbal ability doesn't determine anyone's intelligence (or, as an aside, one's worth as a human being), so I believe deeply that the child of someone who hates something about this child runs a terrible risk of picking up on that hate. What a sad & awful thing...

And as for a cure, who ever promised anyone a cure for autism? Who ever said such a thing was possible? It is not defeatist to accept something & move onward with it, learn to live with it, let the struggle make us better people for it... Perhaps my perspective is the result of spending many years working with & befriending developmentally disabled children & their families, beginning back in the early 1970's. I knew many, many families with disabled children. I was on the babysitting list at the local UCP centre, so got to know many families very well. I became close friends with a girl my age with CP, too. I saw the struggles, I saw the sadness, I saw despair... I also saw joy, pride, & love. I learned that the ability to cope successfully with the raising of a disabled child was not limited to certain income levels or education levels. It seemed to have a lot to do with overcoming grief & getting on with life. The families that were stuck in grief never seemed to be able to fully accept their child, & this was very damaging. Those who were able to move past raised children with higher self-esteem, & like my friend with CP, are now successful adults (she became a special ed. teacher :). I never ran into a family of a child with CP or Spina Bifida, or Muscular Dystrophy (telethons irregardless...) who felt they were entitled to a "cure" for their child, either. There was fundraising for research, the hope for prevention or better treatment, but no-one talked about a "cure". I can't help but wonder if this is a sign of the times, before micro-chips & sophisticated genetic testing was available. Now we have prenatal screening for many things & tests on the horizon for many more. All of this promises a "better" world (at least for those who have access to them), but I don't buy it. Many others have spoken more eloquently to the issues of eugenics & decreasing our human diversity, so suffice to say that I share those concerns. But another concern I have is when did our society get this sense of entitlement? When did the overwhelming sense that parents have the right to blame or sue or expect restitution for giving birth to a child with significant differences occur? When did we decide as a society that all people have the inalieable right to being "perfect" at birth? And, for that matter, who decided what "perfect" was? Perhaps it's that I have been surrounded by "the disabled" (& actually been disabled myself) for most of my life, but I never expected that my child would be "perfect" when he was born. I hoped he would be ok, sure, but my main concern & joy was bringing him to life!

At first, of course, having a baby is about "us". Charlie & I really wanted a child because we felt it would enrich us a individuals & as a couple, although we never expected it to be easy. This has turned out to be true in every way. A big part of that enrichment has been the discovery & nurturing of another human being, with his own individuality. I'm not in charge of just how individual he gets to be- that's up to his genetics & the indefinable "Brendan-ness" of Brendan. I think that we've been aware of this from the very beginning, & why I am aware that I really need to get out of his way sometimes, so Brendan can be Brendan. As his mother, I feel I have the right & responsibility to help him become a functioning person in our society, to teach him & encourage him to be his best. This teaching covers everything from education to manners to a sense of his belonging to the human race, with all that this means. I also have the right & responsibility to call society on the carpet when it's definiton of functional is toxic & unrealistic. That's where the advocacy comes in... & by doing our doing this for him, Brendan learns how to do it himself. In no way do I believe that "Autism Advocacy" requires that my kid's autism be changed ("cured"). Having sensed in my gut, back when I was in my teens, that the families that moved forward with their lives, loving & adapting as necessary to their disabled children, were the ones who succeeded in all the ways that I count success (happiness, satisfaction, production of functional people) I have decided that's the way we'll do it, too. No amount of railing, weeping, or anger at his difference will help my son or my family. In fact, by not taking a cure stance, we are moving forward as a family. Our positive attitude ripples around us & affects those we know in positive ways, too. As much as I weep sometimes because of Brendan's pain (from tics, from OCD anxiety), it's just a fraction of the time we have together. Keeping this in perspective helps, as has also the successful weathering of past emotional storms. There was a wonderful post by abfh recently that explored the very appropriate place of suffering in life, & the buddhist perspective that "Life is Suffering". It's no wonder that I've found buddhist thought very helpful in my journey as a parent...

For me, the bottom line is that life is what we make of it. When I chose to bring new life into the world, I knew I'd have to stretch myself. That's one of the reasons I wanted to become a parent. But I can't stop stretching... every day I stretch, sometimes it's really painful. Sometimes I fail, & sometimes that's even ok- how will Brendan learn to accomodate others or empathise with them if I'm a saint? I follow my internal sense of fairness (something Brendan seems to have already well in place, too :) to determine when I'm stretching too much, or when I'm not & being selfish. I can listen to my kid, too (thanks to his sense of fairness) & at least take him seriously, of not actually acceding to his wishes. I can listen to my husband, too. I read, I learn, I talk to others, & I hope to do my part to make the world a better place. Not a perfect place. An accepting place... a good place to be alive in.

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At 10:28 PM, Blogger kristina said...

"by not taking a cure stance, we are moving forward as a family."

I can't agree with this more. Forward, and together----Jim and I always talks about us 3 as a team and lately I have been learning, the position of "coach" is being passed around!

I have been bothered too in the past few days about how "advocacy" in regard to autism seems so often to mean taking a "cure" stance, or talking about vaccines etc.. It does the word a huge injustice.

Jim and I were both a bit "different" growing up---being Asian American in my case, having ADHD in his (before there was something called "ADHD"). And everyday we see more of ourselves in Charlie, and indeed of him in us.

At 11:23 PM, Blogger kristina said...

After all the discussions about that Autism Vox post and elsewhere today, I just read this:

Tantalized by the Hint of a Cure for Autism

on Strange Son by Portia Iversen

At 8:15 AM, Blogger abfh said...

Thanks for the link! I agree that being able to stretch beyond one's comfort zone is essential for personal and spiritual growth, as well as good parenting. And in a broader sense, when we become active in working for social justice, we're helping society to stretch and grow and learn.

There's a good post on the Me by the Sea blog that deals with how misplaced feelings of entitlement cause some parents to resent their own children.

At 11:28 AM, Blogger Lisa/Jedi said...

Thank you both for the links!

I was pleasantly surprised by the NYT article, Kristina. Hooray for balanced reporting... :)

abfh, I'm so glad to have the link to "By the Sea". It was a great post & I look forward to continuing to read what SL has to say. I also really appreciated your putting the "Life is Suffering" perspective online. It's pretty much what I believe, but I haven't been able to put it into words as well as you did :)


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