For those of you not following my blog religiously (you should, I’m a minister, yo), Enigma, my 9-year old son, has Asperger’s Syndrome, a form of autism that expresses itself with awkward social behaviors, OCD, sensory issues and other things that make them (to quote every OT we’ve ever seen) “quirky.”

Enigma has been going through the diagnosis wheel since he was about three, when he couldn’t stay in his preschool class without wailing and finally got asked to leave a MyGym class because he couldn’t keep up with the group, socially or physically. At age four, he was diagnosed as autistic. At age five, it was SID (Sensory Integration Disorder/Dysfunction, per his OT) or PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified, per the neurologist), then it was “we don’t know,” which is code for PDD-NOS and we stuck with that for a couple of years, having the school put him in the developmental delay program. Once he aged out of that program, we had to get another diagnosis, so he had a full psycho-social evaluation that provided a “score” on the autism spectrum, in which he fell into the Asperger’s realm. The neurologist agreed…

No offense to neurologists, but it seems like you’re all supposed to be magic doctors for a disorder that has yet to really be defined, and I feel your pain at having to smile and nod and place a label on kids who may not really be under your realm of authority.

…and, so, Enigma’s school label became “autistic.” Basically, nothing really changed with that whole process in terms of school services, except that I stopped fighting what I probably did know all of those years. My baby is autistic. Any parent of an autistic (or otherwise “different” child) knows that intense feeling of denial, and the hollow acceptance that follows when we run out of “buts.”

Over the past year, since that final label was adhered to Enigma’s forehead, he has done brilliantly in school and with his speech and fine motor issues; enough that he is no longer receiving those services in school (or privately). He is, as an OT once said, as good as he will get. He’s quirky. He assists me when I don’t remember which Metro stop to use, and he loves unconditionally, even if he’s kind of an ass at times. Since school ended in June, I’ve watched Enigma as he deals with a non-structured life, a few household changes and, well, boredom. He’s stimming, a lot, and hyper focused on things like hotels… ad nauseum. I’m going to be the first to admit that as much as I love this child, I am so tired of discussing the layout of major hotel chains, escalators and bathrooms. I’m only human.

That’s not the source of my angst. Autism is not the source of my angst. Traveling across the country is not my angst. Having to watch my grandmother deal with Enigma 2010… is my angst. My grandmother, bless her heart (hehe), is a very southern woman. After I lost 80 lbs, she called me fat and told me I had a drinking problem (after which, I made a point to drink more in front of her). She “whispers” to others about you when she thinks you can’t hear her, but her voice is loud and somewhat screechy, and she doesn’t fool anyone. Last summer, she whispered to my cousin’s wife about Enigma, and how he was on her nerves (she’s 88, I get that) and that he was, sigh, retarded.

Regardless of how much I try to explain, and I know she has tried to understand, I’m about to spend four nights with her, four kids and Freedom in her tiny 2-bedroom duplex, and I am a wreck. I can’t hear it again, not this year. I can’t watch the whispered conversations. I can’t explain, over and over again, that he is not a candidate for an asylum.

Ok, I can, but I’m not going to like it. Its four days of hell based on genetics. I really hope that she didn’t throw away the vodka.

Send me love, folks, send me love.