I haven’t made a post in a while because I’ve been doing lots of reading, probably too much, and thinking. I seem to be at a sort of crossroads. But maybe I’m really not – I’m not entirely sure what to think anymore.
I went to a documentary premier a couple of weeks ago, followed by a panel of biomedical intervention specialists: a couple of DAN! Doctors, a homo-toxicologist, a holistic nutritionist and a reporter, David Kirby, author of Evidence of Harm. The movie being screened was entitled Autism Yesterday, and it profiled five families who had ‘recovered’ their children of autism with the use of biomedical interventions.
I was a bit skeptical when I first heard about the screening and panel; I almost blew it off. But I figured it wouldn’t hurt to listen, so I accompanied a friend, a dietician. I wasn’t exactly off base in my skepticism. Each family showed video of their children having meltdowns, head banging, toe-walking, inability to speak, the typical behaviors associated with autism. And then miraculously following either special diets or chelation or some other combination of biomedical treatments, they proclaimed their children recovered and then showed them talking and behaving almost typically. So here’s my first problem: It they are almost typical, and still need the myriad therapies, how can they be called recovered? They were greatly improved, skillwise, and seemingly happy kids, but I don’t think that can honestly be touted as a full recovery.
There was a lot of talk about mercury and vaccinations – more information than I have been able to process truthfully. I bought David Kirby’s book because I wanted to read what he had to say. It’s quite disturbing. I haven’t finished it yet, but so far every indication is that, whether or not it caused the rise in autism diagnoses, an awful lot of kids seem to have been given way more mercury, in the form of thimerisol, in their first year of life during the late 90’s. This disturbs me, yes. But then again, I’m not sure that I want to go running to our old pediatrician to find out exactly how much mercury was pumped into Gus.
My husband and I discussed some of these theories and determined that they don’t seem to apply to Gus – none of them. No genetic abnormalities were found in three rounds of genetic testing, which I stopped because my son is not a pin cushion. He was tested for heavy metals and his numbers were not alarmingly high, so I’m not really inclined to chelate him on the possibility that there might be mercury hiding out in his body somewhere. And he has never shown the severe gastric distress that most of the activist parents describe in their children, so I see no reason to remove gluten from his diet. I’m even wondering about the benefits of our non-dairy existence and may ease up on the ban slightly. Why? Because the kids like their cheese.
All the stuff I’ve read from that side of the debate, aside from giving me nightmares (literally) led me to seek out counter-arguments. So there’s this other school of thought that believes autistics just need acceptance and to not be treated like damaged goods. I agree with that. They don’t seem to buy into the mercury/vaccine theories or the biomedical theories…I can understand that as well. Nothing, including any genetic defect, seems to fit my Gus. I know he wasn’t ‘made autistic’ by vaccines, although they may have exacerbated what was already present. The day he was born he was different and sensitive. He just…was.
Where I start to diverge from the more ‘positive’ camp of thinkers is that while I see my son as a blessing, I don’t see his autism as a necessary blessing…or a curse. It is what it is, I guess. It’s for damned sure not all roses. I’ve never been one to insist that the glass is half full; there is half the water’s capacity and I can’t be bothered to judge beyond that most times. Sometimes, life with an autistic child, it’s hard, but the rest of our life - bills, work, family - is also hard at times too. As a matter of fact, Gus is often easier to raise than his five-year-old, typically-developed (so far – I’m waiting for a teacher to tell me she has motor skills issues because why wouldn’t she with an autistic brother) sister. This difference has little or nothing to do with his autism; he’s just an easy-going kid who likes peace around him. But I worry more about bills than I do about his autism, and I get more upset about family matters than I do about his behaviors.
I’ve started trying to remove environmental toxins from the house. Not because he’s autistic, but because he’s got eczema. If there are ingredients in the laundry detergent known to cause irritation, maybe removing them will make this summer a bit less ‘steroid-y’ trying to cope with the flare-ups. By the way, the dairy removal also had a little to do with his physical health and sensitivities, not just the mental ones.
When I tell Gus to stop humming while he’s eating in a restaurant, it’s not because I’m ashamed or that people will look at him funny, although I certainly don’t appreciate when they do. But I was raised to have consideration for the people around me. MM isn’t allowed to crawl under the table or climb on the seats either – because it’s annoying and inconsiderate to the people around us. Should I expect that the world should just suck up whatever my kids dish out because they’re kids or because one of them is autistic? That’s craziness. I don’t care if my son runs through the house (except when it starts making me dizzy), but he has to know that he can’t do it in school. Why is this an unacceptable expectation or trying to make him something he’s not?
I don’t need my children to be perfect or anyone’s version of ‘normal,’ I just want them to be healthy and happy and compassionate. I want them to be able to navigate the world safely and independently because realistically I won’t be around forever. But I have no intention of tormenting Gus with treatments or medications; he’s not sick, just different and learning every day.
I doubt that I’ve made a definitive point here. This is just some of what’s jumbled up in my brain, trying to find an escape. Hopefully tonight there will be no nightmares.