Friday, March 10, 2006


I was looking through the latest Syracuse Culural Workers ( catalogue this morning and came across a poster from a South African children's rights organisation that said:

All children have a right to:
Love and security
Healthy food to eat
A decent place to live
Adequate medical care
Be protected from abuse
Good education

Our rights=Our future

I agree wholeheartedly with this statement. As a mother & an adult who was abused as a child, I don't think we can reiterate too many times the basic rights that children deserve. As an adult Unitarian Universalist/Jedi, I believe that we are all interconnected- in the present now & for all time, and so our behaviour towards one another has real consequences. The good we do has a real effect on all of us, as does the ill we do... This may sound hippy-dippy abstract, but I believe that if I live this philosophy, then it becomes concrete & a true Force in the world.

This statement of rights also got me thinking about "rights" in general, and how people act on their perceived "rights". Specifically, I've been thinking about the perception of "rights" in the on-going conflict within the autism "community" over "cure" & "acceptance", "poisoning" vs genetics...

When B was diagnosed with Aspergers Syndrome, C & I took a look at the literature published to date concerning possibility of mercury poisoning, among other things, as the cause of autism. Both C & I are accustomed to reading these sorts of research papers- he's an MD & I was a biomedical researcher- & so we were able to look carefully at the types of statistical analysis that was done, as well as the populations studied. Neither of us found compelling evidence for connecting autism to external causes in any of the papers we read. Our belief is that B's autism is genetic, since we can identify other family members with spectrum tendencies (I see them very clearly in myself, for example). Another observation that counters a post-natal onset for B's autism is not only his "high needs baby" infancy (chronicled in my "History pt. 1" post) but also his lack of binocular convergence- in short, my kid never ever recognised faces (among other things) until after he had spent nearly a year in visual/perceptual therapy. I see the visual issues as an integral part of his spectrum-ness, so it just doesn't make sense to me that any of his spectrum charactersitics could be post-natally induced. I've come to see that being on the spectrum is part of who B is. It is how he perceives & interacts with the world, & although we have given him assistance of various sorts to help him organise his perceptions & make sense of them, I also value his unique way of looking of things & wish the rest of the world did, too.

I was explaining this all to a friend yesterday at school. Since we haven't known each other for very long, she has only seen our moving into acceptance mode of B's autism & not the struggle we went through to get where we are... It's relevant to her because her son is on the spectrum (to anyone observing & working with him), but has not been able to get an AS diagnosis from the specialist she's taken him to, which puzzles me (I've been encouraging her to get a second opinion). I know that seeking such a diagnosis has mixed responses in the autism community- but the effects of being neurologically different without an official diagnosis can be devestating on a child & their family, at least in our community. The child is the biggest loser, since he doesn't qualify for pragmatic speech services (which he needs) & are horrifically expensive for parents to cover themselves- if they are able to get them outside of a school setting. The family finds themselves locked in the midst of their grief & confusion, too, because they know that their child has special needs & is not developing "normally", but they don't have anything concrete to wrap their thoughts/fears/hopes around. This friend asked me yesterday if I thought it was the "live vaccines" that had damaged her kid (but not his younger brother...). I tried to explain that these were different issues (the "live vaccine" was the polio vaccine, & there was a danger there- one that I took seriously, since my mother had had polio as a child), & then explained our understanding of the research on vaccines & autism... This conversation helped me to understand how confusing the conflict over whether or not vaccines are related to autism has become. Not everyone can read & understand medical literature, or understands how statistics can be made to lie, subtly, or to favour the desired outcome. It also helped me to understand how easily a parent's fears can be exploited by unscrupulous people... and perhaps I am again being naive, but I really don't understand how anyone could think litigation & large settlements will make things all better... all right, I can see that the promise of a large settlement could make some families feel they can better care for their child with autism, but I can't help but feel that this is not the best solution to helping families cope/care/value their autistic family members.

It also led me back to thinking about what people believe to be their "rights"...
I see lists of "rights" being necessary when the society does not automatically grant certain basic needs to its members. We have a Bill of Rights in the US & I am glad of it, although it seems to be missing some essential things, in my opinion, such as the right to adequate medical care, sufficient food & housing, to be free of harassment based on gender/sexuality/race/religion... I'll stop there for now. Along with rights, for adults, there are also responsibilities of course. I believe it is my responsibility as a parent to make sure that B receives the same rights that I do, under the law, by providing him with things like a home & food, education & medical care. C & I have extended this list of rights, based on our religious beliefs, & also try to see that he is respected, loved, & treated with dignity. The ways that we do these things, & perhaps our belief that he deserves them causes us to diverge somewhat from the mainstream, or so I believe. For example, the way we respect him & treat him with dignity is to refrain from corporal punishment in our home. Our kid does not get spanked or slapped. We took this belief so far as to refuse to "Ferberise" our colicky child when our pediatrician suggested it, choosing instead to co-sleep & night-parent him. Another way in which we treat him with respect & dignity is to make sure he understands the importance of treating others, including us, the same way. It takes energy to follow-through on these things, but it's a responsibility we feel strongly about. I think that where things get very fuzzy in the confrontation over how to treat & even perceive people with autism is in the area of personal beliefs about how children should be raised. Perhaps it's even deeper, going back to why people choose (or don't choose) to have children. Because of our backgrounds, C & I were aware of the possibility that our child would not be "perfect". We decided that we didn't care how our child came out- we just wanted the chance to be parents- so we refused all prenatal testing. We never assumed that we have the "right" to a perfect child, & although our process of learning & coping with B's diagnoses was just a bumpy as anyone else's, we've never felt that anyone owed us anything because our kid has Aspergers, Tourette's, OCD. We are not susceptible to promises of recompense because we're not looking for it.

I can say honestly that, although I have no promises of B's future success, no certainty that my obviously bright & in many ways capable child will ever live independantly, I am glad of who he is. I enjoy my life most of the time. Yeah, it's scary sometimes. He's an unpredictable kid, getting bigger, with puberty just around the corner (eek!). He's also a delight. C & I have a good relationship that has been tested by this kid & has remained resilient. We enjoy raising our "different" kid. We wish he didn't have so many difficulties (I'd gladly dump the OCD right this minute, but it looks like it'll take a bit longer...), but no amount of blame or money would make a difference in our lives. We are fortunate- we are not homeless, we are raising B in a two-parent family, we have medical care when we need it & I don't have to work in order to make ends meet- so I can stay on top of B's many needs & make sure we give him our best. I am deeply aware that this good fortune is a big part of why we can feel comfortable raising our autistic kid. I am also aware that it is our attitudes that make a big difference as well. I have been able to adjust my expectations of my life to accomodate raising a differently abled child. I am not ashamed of him, nor do I consider his neurological differences to be "damage" requiring compensation.

I know that there are many voices, from many different perspectives, in the controversy over how to look at autism, how to "treat" it, how to live with it. I can only express my own way of looking at my own experience with autism. But I would also like to suggest that all who participate in this discussion look inside to their own expectations, their own sense of their "rights", & try to understand how this affects their journey with autism. I believe that there is life beyond hopelessness & broken dreams, if we are willing to dream differently.


At 1:05 AM, Blogger Zilari said...

I was also a bit surprised to encounter tales of "mercury fervor" when I started "researching" autism...when I was diagnosed it seemed absolutely clear to me that there is a strong genetic link to this sort of thing. I have two cousins with spectrum diagnoses, and a whole family of quirky people. The quirkiness is just expressed more strongly in some than others, and reaches "diagnosable" levels in a few of us. Plus, like B., I was a "high needs baby" -- according to my parents, I was a constant screamer, never slept, had innumerable ear infections, constant and seemingly random tantrums, etc. I was also a difficult labor / birth...and I have actually read that this can be caused BY having atypical neurology (that is, the brain develops autistic patterns while the baby is still forming in the womb) and the baby can have difficulty knowing "what to do" to be born! Very interesting stuff.

I believe that there is life beyond hopelessness & broken dreams, if we are willing to dream differently.

I love this quote, seriously. You are a good writer and I can see things I identify with in it. It's clear that you've got your own brand of quirkiness. :)

At 10:43 AM, Blogger Lisa/Jedi said...

**blush** thanks for the feedback Zilari!

At 4:37 PM, Blogger Estee Klar-Wolfond said...

I agree with Zilari.

And... yes, all dreams do change.. Abraham Lincoln said that the nice thing about the future is that we get to live one day at a time.

Thank God for that. It leaves time for reframing expectations.


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