long days

This week we had an appointment with L.'s "autism doctor" -- the pediatrician who specializes in the physical issues that are often present in kids on the spectrum -- to go over all the results from the various tests we've done so far. As fun as it is to find out exactly how much arsenic and lithium are present in your child's urine sample, it's even more exciting to learn exactly what the bacteria and yeast balance is in her stool. Almost as much fun as it was to collect those urine and stool samples in the first place.

For someone who opted out of chemistry in high school, starting down this road is a little daunting. There are so many therapists and practitioners, all claiming to be able to heal autism through the power of chiropraction or acupuncture or oxygen chambers or whatever. And there is always some parent on some autism Yahoo group testifying that those particular supplements or the dairy-free wheat-free diet made all the difference and now their kid is cured. Your head can get so turned around, it almost makes you wonder if Tom Cruise wasn't right about vitamins curing PPD.

I feel good about the doctor we are seeing. L calls her Dr. Singasong (her name rhymes with that.) She went to Stanford. She trained at UCSF. And, as I excitedly pointed out to my husband, she has a real doctor's office that looks just like every other pediatrician's office I've ever been in (with the exception of the slightly hipper Ikea decor.) He reasonably asked if I had expected her to conduct her business in a shaman's tent. It wouldn't have been that much of a stretch. And honestly, I don't know if it would have deterred me. She believes in homeopathy and herbs and vitamins as well as traditional western medicine, and as far as I can tell she doesn't seem bothered if you kind of think homeopathy may be an enormous crock.

We also had our meeting with the school district this week, where we found ourselves in the bizarre position of arguing with the special education department head about how super duper autistic and deserving of special education services our child is. Add that -- along with me telling Dr. Singasong that I would consider sneaking into her room late at night to inject her with a B12 shot; i.e., willingly mess with her sleep -- to the never-ending list of things I would never have believed I'd be doing and saying a year ago. The school district people offered us some, but not all, of what we asked for -- which means more evaluations by their people.

Every time I think we're reaching the finish line when it comes to evaluations and assessments and standardized tests and reports, and about to get to the part where we get to the therapy and the help, someone says, "Oh yeah, we'll have to do our own assesment." We've been waiting for or conducting one evaluation or another since November. Our file at the school district is stuffed two inches thick with various reports from various professionals all saying the same thing (and yet my mother and sister still say things like, "She seems just fine to me, I'm not sure I believe it." Oh yes, well, if you have a few hours, here's 100 pages that say differently.) I swear, at this point L rolls her eyes when she hears, "We're going to go meet Mommy's friend s- and-so who likes kids and wants to ask you some questions." She can do the Vineland and Preschool Language scales and instruments and whatever other standardized test you want to throw at her in her sleep.

Everyone says how important early intervention is and how critical the first 3-5 years are in brain development and how if you can just reach kids when they are young, you can make such a difference in their prognosis -- well, this is all true, but not if you are spending the first five years conducting pragmatic language tests and cognitive assesments. It's been almost six months since we first started calling and making appointments because we were worried something was not quite right, and we are just now starting the actual therapies without any end in sight to the assesments. And this is in the Bay Area, with all the doctors from Stanford within spitting distance, with fairly good insurance and one stay at home parent who has nothing better to do than schedule appointments and file insurance claims. Which is to say, we're probably lucky it's only been six months. What about kids who are not in such fortunate circumstances, and are even more significantly affected by autism? What happens to them? How long does it take for them to get even the most basic treatment?

So what's my point? I have none. I'm stressed and cranky. I'm sitting here with my ever-larger glass of red wine, wearing an aromatherapy neck wrap purchased from a mall kiosk trying to unclench my neck and jaw muscles. I need an eyebrow wax like you wouldn't believe, but last week I walked right up to the salon and then turned around without going in because I just don't have extra energy in my life right now for getting hair ripped out of my forehead. So I'm going to look into threading. Ah, the eastern alternative to waxing: I bet Dr. Singasong would approve.