AoA has ran its weekly parental rant. So, here is my weekly countering.
None of my children were typical babies or toddlers. They met the gross motor skills developmentally on time, and the girls did better with talking than their brother did, far better, but no, they weren't like "normal" babies. On many levels, the girls' development was so much smoother compared to their brother. But, even they didn't imitate and it wasn't until this last year, at ages 7 and 5 that doing patty cake finally seemed like something to do. I don't think I've ever been pissed I was denied the "normal" way of things, though. I was too busy loving them, delighting in them, and working my ass off to make them comfortable and happy, while working on the skills they weren't developing on their own.
My girls are smart, charming, funny, different, and as long as things are going as planned, and all is right, they are fine. It takes a lot of effort on my part and theirs to keep things at an even keel. My son has added difficulties, can go on about yugioh and gangland until you want to weep from an obsession that has lasted years and shows no sign of abating. He plays beautiful piano compositions with a phantom of the opera flair. He smiles from the depth of his soul. But he often is lost in his beautiful mind and need frequent direction to keep him on track. And my gosh, he can bitch up a storm that lasts as long as the yugioh discussions. I love them all completely and totally. And I have devoted so much of my life and my energy into working with them to give them the best chances. I homeschooled my son for a decade and before that was in the school system with him daily. We did the meds the docs recommended until he had a stroke at nine; we did the standard OT, PT, and speech for him and my youngest gets these services now. No ABA because ABA has never been offered. So, I work on discrete skill sets they need to master, and I incentivize and sometimes use the taking away of a favorite toy or watching a movie or a special dessert to get the child to do the particular task.
It's called parenting. No matter what it is I do with my children, whatever amount of effort, whatever particular skill I am using, it is parenting. To call it other things and bemoan my state, my lack of what others might have with their children, is pointless. It serves absolutely no point whatsoever. And it wastes my time, my effort, and my energy, and it demeans my children. Seriously, think about it, if someone talked about their relationship with you in those same terms, how that would make you feel? Why is it that no one over at AoA is considering things from the child's point of view?
Michele has an excellent blog up right now, http://www.adayinthelifemij.com/2009/08/im-not-autism-mom-im-not-autism-parent.html, as does Bard Child, http://prismsong.livejournal.com/2549.html (which I talked about last night). They ought to be required reading.
I don't get being angry at a fictionalized concept that other parents of children with autism would want you to ignore legitimate medical concerns (and I'm not defining what's legitimate here; that's between you, your doctor, and your child) and not treat them. Of course treating underlying medical conditions will make your child feel better and be happier. To suggest that anyone would want your child to be constipated and in pain is to be raging at something that exists in your mind alone.
You write: "AND YOU WANT TO TAKE THAT AWAY FROM ME?!?!?!? WHO IN THE HELL DO YOU THINK YOU ARE??!!" (author's caps) http://www.ageofautism.com/2009/08/dont-try-to-tell-me-how-to-love-my-children.html#more.
And I think as I read yet another pissed off parent raging at the world, who the hell are you yelling at? Who said they wanted you to feed your child a fast food, fatty processed diet? Why are you so angry? Nancy Snyderman reports on studies that show no particular benefit of a GFCF diet to children with autism; that covers children with autism without accompanying gluten and casein intolerances or celiac disease or lactose intolerance. As far as I know, no study has measured the effect of this diet in children with those accompanying difficulties. If your children have those problems, of course you treat that. Of course you do, and I highly doubt Dr. Snyderman would suggest differently.
I don't get it. I don't get running week after week of pissed off parents who rage at things that don't actually exist. And if they do; if there are folks out there on the various forums you frequent who engage in the kind of hostile behaviors that some in the mercury brigade do (ahem), then why not say, on this site, so and so said this and that's what I'm raging at.
It's a false dichotomy. Age of Autism has decided to ramp up the rhetoric, now essentially defining themselves as the "if you don't agree with me lockstep on autism causes and treatments, then you're saying I don't love my kids." I'm going to name our "side" the "what the fuck is your problem?" side. It seems fair. And way more accurate on our side.
I get that there are more than two divisions, that we all have varying positions on autism, treatments, how to deal with it all. I get it, my friends and members of the facebook group and Raising Autism get it. We agree that we don't have to agree on everything. We respect those differences and the right of parents and adults on the spectrum to make their own decisions. We're trying to provide the most accurate scientific evidence out there on treatments, so informed, rational decisions are made. We're trying to get the input of adults on the spectrum who've been through the various treatments and find out what helped them and more importantly what hurt them.
We're working for acceptance for those with disabilities and those who are different. We're working to befriend those who are friendless, to be a soft shoulder, a welcoming smile. We're working to make things better for everyone.
What are you doing, as you rage against the world because you were handed a life you didn't anticipate? How exactly is Age of Autism working to make the world a better place for people on the spectrum? I know, the products from your sponsors will help to "recover" your children; they'll be on the over the counter woo for as long as your readers can afford to pay for it or until they wise up and realize they might as well have flushed it down the toilet. That's your effort, isn't it, really? Scare the shit out of folks, demonize "big pharma" while letting big "nutra" fund your propaganda, make the folks think it was the thimerosal, the MMR, the DTaP, lyme disease, SV-40 (you let it post, you're endorsing it, because you are controlling what you let on), sticky blood, yeast, and a whole host of other causes. And yet, your loyalists pay no attention to the inconsistencies or how you leave behind charlatans that even you wise up to as being bad for your bottom line.
Love your children, work hard for your children, and do something better with what looks like an incredibly selfish, self-absorbed and misguided anger from what I can see.