Happy Autism Awareness Month

If you had given me a million dollars to figure out which of my sons, based on their behavior at 1 year old, would be autistic, I'd have guessed wrong.

Databoy is ADHD, although now that he's older, his social/relational and semantic speech difficulties are showing more, and we're thinking he might be an Aspie. He's extremely bright (in the "gifted" program at his school), but saying things like "I don't see why not" when he asks to go to his friend's house confuses him. Of course, the fact that his nickname is "Databoy" should probably also be a clue, there. As a baby, he was always very intense and serious about EVERYTHING. He would be right on the cusp of "late" doing things developmentally, but when he did them, he did them near-perfectly the first time. He didn't talk much at two, but was verbose at three. He also stuttered, and retains to this day a verbal tic when he speaks, as well as twisting his fingers all the time.

Bamm-Bamm, as you guys know, is PDD-NOS (although his classification according to his IEP is "autism" because it allows him more services, and, really, the treatments are similar). He is VERY social, craves eye contact (usually...avoiding eye contact is a sure sign he's tired or sick), and one of his strongest reinforcers is giving him a hug and telling him what a great job he did. He was always a cuddly baby, attached to my hip, and spent a lot of time in the Snugli (facing out. He always had to SEE what was going on). He rolled over, walked, and talked at the appropriate age. I still remember the day I called my ex- excitedly to report that he'd put two words together ("Mama, up!"). A few months later, it was gone. If I'd known then that I wouldn't hear him speak again, I'd have paid closer attention to what his voice sounded like.

Unfortunately, one of the issues their father and I have is what's in their best interests and how to treat them. He's one of the anti-vax folks, ready to try the cure-du-jour the minute he reads about it, and thinks that I don't work hard enough to "cure" the younger one (because otherwise he'd be cured already, don'tcha know) and insists that the older one is "normal" and shouldn't be under treatment at all. He quotes me statistics about this percentage of autistic folks also have epilepsy, have you had him tested for epilepsy? This percentage of autistic children are ________, have you had him tested for that? This one doctor tried an experimental treatment on three children, and they're a little better, can you look for someone in your area who does this?

He sends me links to articles...as an example, he once sent me an email that linked to a story about a family whose children had died due to being on one of the same drugs that Bamm-Bamm takes. His email said, "Read this article. Do you think we should take Bamm-Bamm off of _______?" Never mind that the article was about parents who were being convicted of child endangerment and neglect, and were dosing the children with approximately 20 times what Bamm-Bamm takes on a daily basis. There was a time that he had decided that ABA (Applied Behavior Analysis) was the cure-all; then, after two and a half years of Bamm-Bamm being in an ABA program, and not yet being "cured," has decided that maybe he needs something else.

He is typical of many of the folks you'll see in the media this month -- stuck at the "devastated" stage of having your child diagnosed with a disability. He feels that the universe has somehow cheated him (as if we're all entitled to normalcy, whatever THAT is), and that, because "the universe" isn't concrete enough an entity for him to blame, searches for someone or something else. Something he can point to and say, "THIS is what caused the autism," and, hopefully, someone or something he can sue (because someone OWES him for having a "differently abled" child). Incidentally, he also believes that aliens visit Earth, that Bigfoot and the Loch Ness Monster are real, and that there is a government conspiracy to cover up just about anything. I wish I were kidding.

He is desperate. He refuses to accept his son for who he is, to take joy in what he CAN do, rather than bemoan what he can't do. I understand this. I can sympathize with this. But I cannot condone this eternal wallowing in the general unfairness of life. No one promised you a "normal" child, and having one who doesn't fit the traditional categories of "normal" is also not the worst thing that ever happened to anyone.

Bamm-Bamm is, as I type this, in his playroom, sitting quietly on his fouton (laid out on the floor, of course...what good is something that folds out into a bed when it's folded up?), paging through a book about walruses. I ask him if he likes his book, he looks up at me, smiles, nods, and goes back to his book. Moments like this serve to balance out the moments where he has an insane, screaming, clinging tantrum, refusing to get out of the car because he saw a dog (he's terrified of dogs). Yes, those moments are embarrassing (he almost always picks public places to do this) and difficult, and I get tired of passersby glowering at me, or having the gall to say things like, "If you'd discipline your child better, he wouldn't behave like that."

If he could talk, he'd say, "Oh, Mommy, I'm so scared of that dog! Dogs scare me! Can you hug me just for a little while to make me feel better and until the dog goes away?" But he can't. So he expresses himself as best he can: with tone of voice, gesture, facial expression. How can I be angry that he is expressing himself and the depth of his fear non-verbally? If someone asked you to tell someone without using words that you are terrified of that dog and don't want to get out of the car until the dog is gone, how would you do it? Wouldn't it involve screaming, refusing to move, clinging to someone's arm and hiding behind them?

He DOES communicate. He DOES talk. We just have to learn how to patiently listen.

And? I may just be the luckiest chick in all creation to have found this guy, who is the best.stepdad.EVAR.