Friday, March 03, 2006

Respect...

Thanks to recent posts by estee (http://joyofautism.blogspot.com/), zilari (http://partprocessing.blogspot.com/), & alexander's daddy (http://morethanalabel.blogspot.com/), & the ensuing discussion in their comments' sections, I have been trying to educate myself further about the issues & conflicts within the autism community these days. I found autism diva's site (http://autismdiva.blogspot.com/) to be very helpful, especially for info about current events & controversies, & from her site I found neurodiversity.com (http://www.neurodiversity.com/main.html) & the cafe press shop of oddizms (http://www.geocities.com/autistry/oddizms.html), where I detoured to find a replacement for my puzzle-piece ribbon car magnet. Or, perhaps, an addition to it, I haven't decided yet. What I have been finding reinforces (unfortunately) my instinct to keep the heck away from the popular media... it's just too overwhelming. However, I can't just stick my head in the sand either. I have strong beliefs about how all people should be treated, and I can't advocate for my beliefs very well if I'm ignorant of what's going on out there...

To be honest, I do feel naive- I had no idea that there were parents subjecting their children to dangerous "therapies" to "reduce" the amount fo mercury supposedly in their bodies. I had no idea that the puzzle-piece magnet may be seen by the adult autism community as disrespectful. For me, it was a way of publicly "coming out" to the community as a parent of a child with autism, which was a big step on my journey of acceptance & beyond. In honour of this journey, I think I'll probably add the new sticker, rather than replace the magnet with it (thinking on the fly here...). I have never found the practise of being "pc" terribly helpful or respectful, really. I think it just allows people to hide obvious issues behind a mask, or pretend they're not there. What I am most interested in is being respectful, which can lead to similar behaviour (as "pc") but from different motivations. Bottom line for me is that it all boils-down to respect.

My educational journey was motivated by my wish to be respectful to autistic adults & to other parents of kids on the spectrum, as well as my own growing child. I think that my lack of previous interest in exploring these issues has been motivated by encounters with other parents of kids with autism that were less than positive. I think we've been very fortunate in most of our interactions with friends & family since B was diagnosed with AS. Our immediate family has been pretty supportive of all 3 of us, although it's not always easy for older people (read "grandparents") to accomodate B's behaviours, since they don't have to live with him day to day & don't always understand why we don't jump on every little thing & remediate it (whereas we try to "choose our battles" & let B just "be" when we think it's appropriate). The greater number of our friends, particularly our church community & sailing friends, have been extremely supportive of us as individuals & as a family. These are the folks who have been with us from the beginning & seen us through the process of B's "dominoes-falling" diagnoses. Many have proactively educated themselves about AS & asked us for resources (& used us as resources as well) for learning more. I can think of only one close friend who disappeared after B's initial diagnosis, which is still painful, but cushioned by the far greater number of friends who've been there for us. When it comes to school, we have also been very fortunate to have found schools that treat B like a person to be educated & not like a problem or as a "diagnosis". From my interactions with other parents of spectum kids at B's school, I know that our story is far from common. Some of them feel isolated within their families, vilified because their child is "different" & for their attempts to find out why... Some parents seem to be trying to raise their kids in a bubble, free from the expectations of the "real world", which they don't feel their kid can handle. And as varied as the experiences of parents at B's school (which requires support of an alternative education philosophy, counter to mainstream educational thinking) seem to be, my experiences with other parents have been, other than one or two notable instances, uncomfortable...

I should preface this next bit by mentioning that I have a fair amount of social anxiety that has slooowly eased-up just by having a kid & having to be in social situations (& be functional in these situations). I am not the ice-breaker in a group of unfamiliar people. I warm-up pretty quickly, though, once somebody gets me talking, & in a group of friends I have no difficulty at all. I also have always known that I am different in most ways (this is probably part of my Survivor stuff) & I'm not like most other moms I know. It probably could be summed-up by reminding everyone that I think I'm a Jedi (for heaven's sake!), although most people do not know this :) What they see is a woman with long, greying hair, no makeup (occasional lipstick), & hand-made clothing that relates very little to current fashion. This is how I am most comfortable being & although I know it can increase my social anxiety, I am far more comfortable doing things my way rather than trying to conform (that was my previous life...).

The summer B was 6, when he was diagnosed "officially" with AS, his psychologist recommended a "Friend Makers" class for kids with Aspergers being given by a colleague & a speech therapist. It met once-weekly, for an hour, for 6 weeks. We parents sat in the waiting room together, therefore, for an hour, for 6 weeks... The first week, the only parent who spoke to me was one whose kids also saw B's vision therapist, so we'd met there. She seemed to know a few of the other parents as well, but never thought to introduce me to them (there were 8 of us, mostly moms, with occasional dads). I sat & knitted &, essentially, observed for those first couple weeks. It was a very uncomfortable place... one kid had trouble staying in the room with the other kids & had to come out to see his (all of the kids in B's session were boys) mom frequently, which seemed to frustrate his mom a lot. Another mom had 3 other kids in the waiting room with her, at least one of them appeared to also be on the spectrum, & she was constantly chivvying them about their behaviour... Another couple seemed frozen, with "deer in the headlights" looks on their faces. I really wanted to say something to them, help them to an understanding that this was not the end of the world... the problem was what & how to say it. By the third week, we began chatting among ourselves more naturally. I was glad that I had kept my mouth shut initially- these folks were all over the place in terms of their feelings & I'm sure I'd have offended someone had I spoken-up earlier. I shared our experiences with school & doctors, which had been mostly positive, & came away feeling very lucky... sort-of. It didn't always seem like luck to me, but attitude, that made the difference in our stories, but I was at a loss as to how I could express this. It was emotionally wrenching to hear the stories as they came out, & I was almost physically (as well as emotionally) reminded of my Survivor therapy groups (I mentioned in my "History pt. 1" post that I am an incest Survivor)... which led me to think that there probably should have been a therapist stationed out in the waiting room with us. After one gruelling hour in there I was unsettled for the whole day. There was so much fear & anger, some of which I could identify with, but a great deal of it was a mystery to me. One mom went on & on about the price of her child's therapies & how they couldn't afford it, but when I saw her bundling her kid into the latest-model ultra-mini-van in the parking lot, I wondered how on earth they couldn't afford their kid's therapy... Other parents talked about the latest treatments & how they were driving their kids hundreds of miles every week to access them... There was such a sense of desperation in that room.

It all left me very confused. This Friend Makers class was about as high-tech as we had gotten, with B therapy-wise. He saw his psychologist at least twice a month & had his vision therapy right through the summer, unlike OT & PT, which was school-based. We had not sought any other interventions for B than what we had learned to do at home... was there something wrong with us? My gut told me that B was fine, really. He had a whole list of issues, such a fine-motor co-ordination, lack of binocular vision, & social interaction difficulties, which we were addressing. But it had never occurred to us that his autism needed to be treated. I kept these mostly fuzzy thoughts to myself, but after one very stressful session in the waiting room I found myself upset all day. We decided to go to our favourite pizza place for dinner that evening, and in the course of the meal not only did B burst into tears because one of the kids had told him that Superman's planet had exploded & that's why he had to come to earth (sigh), but then I lost it while trying to fill C in on my day... C was surrounded by sobbing family members in a resaturant & wasn't sure whom to deal with first (poor guy...). After B went to bed we talked about the whole thing & came to the conclusion that we thought our kid was doing just fine with what we were already providing, & that our guts were our best guide, informed by the great advice we got from our "village". In light of this experience with other parents, though, we also decided to keep a low profile & not to join any of the local autism parent support groups.

When I reflect on these experiences, I am struck by how much our acceptance of anything unexpected in our lives is based on our attitude. It had taken us nearly 8 years to conceive a viable baby. C & I decided to have no prenatal testing at all- not even ultrasound. I don't think anyone can be fully prepared for whatever "bad news" they may receive about their newborn child, but we were certainly ready to accept anything we got. B was our one shot at parenthood, so we ran with it. As I've chronicled previously, B was a difficult, "high-needs" baby, but we hung-in there with him because we were committed to him. He's still a handful, but our commitment is made, & to do any less for him would be disrespectful. We have arranged our lives around him, but not to the extent that we exclude our own needs, so we're pretty happy as a family. Neither of us sees B's autism as a thing that needs curing, and our efforts to help him are directed at helping him make better sense of the world so that he can enjoy his life fully. We don't see B's neurological differences as preventing him from enjoying his life or from having a great & fulfilling life. This is how we respect B & ourselves as his parents. When things feel "out of whack" with B we try to look at the balance of all our lives together, we don't try to fix just him.

So that's the way we do it. What I've been finding very helpful & hopeful is reading the blogs of folks like zilari & autism diva, who are furthering my knowledge of how I can be respectful to them & to my growing son's neurodiversity. There is a little, perhaps somewhat Pollyanna, voice in my heart that tells me that my respect for my son is what will really make things turn out "all right" for him, no matter what happens. I believe this voice, because I've seen the power that respect- which I am defining as valuing a person from & for their own point of view, & valuing their intrisic worth & dignity as a human being- has had in my own life. In light of what I have been learning about how autistic children & adults are being treated, I can only hope that the ripples each of us cause when we treat another respectfully will spread wider & wider. Yes, we need to speak-out, too, & make sure that the world knows that we love & value the lives of those deemed "different". May the Force be with us all, in all the ways we try to make a positive difference!!!

5 Comments:

At 3:02 PM, Blogger Estee Klar-Wolfond said...

Lisa,

An honest post. I can relate to it in many ways.

Sometimes I hear, and I wonder, if those who have less, who spend less, can over do much more for their kids with autism. At first, I would have done anything. Now, I can breathe and relax and just let things be a little more. It looks like you've already reached a point that took me about a year to feel comfortable with, more or less.

I really want to honour Adam's needs and his learning style too. I also appreciate the input from those on the spectrum. We always have to bridge our respective needs. It is the way the world works.

Thanks for this,

Estee

 
At 9:40 AM, Blogger Lisa/Jedi said...

Thank-you, too, Estee. It was a recent post of yours that was the catalyst for this one, actually :) You mentioned having looked far & wide for treatment options for Adam & it got me wondering again why we hadn't done the same & so I discussed it with C... it was good to revisit our thinking. We are fortunate to live in a city with a well-respected teaching & research hospital, where C himself practises & teaches. We have had positive experiences with the people there who have seen/diagnosed B. It is possible that, because C is part of the medical system in our city, we get better responses than non-medical folks, or maybe we just work the system better because we know it :) We have also had the experience of our friend, Paula, whose son was diagnosed with Aspergers before it had a DSM #, to fall back on. We've seen her struggles with the system (& could clearly see how much things had changed by the time B came along...) & have also had the benefit of her positive attitude throughout her journey with her child. Her son has become a mentor for B, which has been absolutely invaluable. I think that my experiences, not only as a disabled person (having spent 7 years in a wheelchair- see "History pt. 1" for details :) but working with developmentally disabled children, also greatly influence how I feel about B. I witnessed so many families in great pain over their disabled children & got only joy from my encounters with the kids themselves, so I have had a strong sense of the societal pressures surrounding the raising of a differently-abled child since I was in my teens. Having spent that time as an identifiably disabled person, I knew that I & other disabled people were intrinsically valuable people just the way we were, so it wasn't hard to see my kid that way. When we were looking into adoption options before B came along we considered adopting a disabled child, but C was not nearly as convinced as I was about it so we decided to explore overseas adoption instead... then B came along :)

So it feels like I made a lot of this journey before B even came along. Of course, I still have a great deal to learn- so much of it about my own attitudes & what I cling to in order to make sense of life. It's when I have to abandon these ideas that things really get shaken-up!

Thanks again for the inspiration you've given me!

 
At 12:48 PM, Blogger Mom to Mr. Handsome said...

I really enjoyed reading this entry. It opened new doors of thought for me. Thanks for sharing.

Kristin

 
At 1:04 PM, Blogger Zilari said...

I realize I'm zooming in on only a tiny aspect of what you wrote here, but I am sort of in favor of the idea of "reclaiming" the puzzle logo / ribbon as something that indicates not that autistic people have "missing pieces", but that everyone, with their own unique shape and color, is essenstial for a complete picture of humanity. I am personally not offended by it...what I would be offended by is the suggestion that I (or any other autistic person) is somehow "incomplete", and you definitely don't convey that message with any of your posts!

You are completely right when you say that neurological differences will not prevent B from being happy or living a fulfilling life. Even though being somewhat "different" from what is typical may result in problems prompted by prejudice or from a world that can be overwhelming from a sensory standpoint, happiness is definitely possible. (I have some very happy memories from childhood, despite various problems that came up). Helping a child make sense of the world is the goal of parenting any child -- though when a child has neurological differences, sometimes additional creativity is required since there is far less data on what "works" and there is a lot of misinformation out there. I think it's actually kind of neat that until recently you didn't know that people were subjecting their kids to dangerous experimental therapies, etc...because it means that from the beginning you saw your son as himself and his difficulties not being caused by WHO he was, but by specific issues that could be addressed.

My parents did not have a diagnosis for me either as a youngster...Asperger's was not in the DSM when I was going through my evaluations, etc., and since I could speak, nobody thought to suggest anything like autism (despite other indicators, like pronoun reversal and perseverative behavior). However, they sought to address things as they came up -- if I had trouble with organization, they set it up so I could get tutoring in how to keep my homework organized, etc. When I had trouble "absorbing" skills from my environment, they taught me these skills step-by-step. My father used to defend me when people suggested there was something "wrong" with me...he accepts that I am a bit different (the AS diagnosis does, after all, explain a whole lot of things that never made much sense before), but he has never thought of me as defective. I think this has contributed to my present ability to function in life.

 
At 3:15 PM, Blogger Lisa/Jedi said...

Thanks very much, Kristin! zilari, as always, you've illuminated my thinking! Thanks again :)

 

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