Sunday, July 30, 2006

the big "D"

My time line of events is starting to break down. Seems to me that in order for some of our history to make sense, some of the stuff that follows needs to come first. Otherwise it's just a boring autobiographical film that occassionally has a few good points that would have made more sense if some good editor came by and chopped it up and rearranged it a bit. In any case, I'll allow my brain to edit my own memory and try to clump the pieces into legible (hopefully interesting) passages.

For now I want to talk about Jacob's official Diagnosis. We didn't get this until January of 2004, and a lot of stuff happened with us the summer and fall of 2003 that impacted our journey. But I'll get back to that when it makes sense to. A lot of that time we spent discussing whether or not we even WANTED a diagnosis. I mean, did it really matter? We knew what was going on with Jacob, we didn't feel the need for him to be examined with a fine tooth comb by degree-holding physicians, most of whom employed methods of treatment that appalled us, just to be smacked with a bright red "A" for Autism on his shirt.

Our family was one motivating factor. Nobody wanted to talk about this without a stamp of approval from an MD. Preferably an MD with a lot of other letters behind their name and lots of offical-looking pieces of stamped paper on their office walls. The Map Man's side of the family knew something was up, but didn't dare (and never did until we volunteered the info!) ask what it was. My family was just plain in denial that anything was happening. Both sides think I'm a little "out there" anyway, so aren't exactly likely to take anything I say too seriously unless it's backed up by good, solid, conventional support.

We also were having trouble getting therapists to talk to us. The first question out of anyone's mouth was "what's his diagnosis?" Why did that matter so much? Couldn't an OT or an SLP just do their own evaluation and tell me how THEY could help my individual son without someone else telling them what was clinically wrong with him? Everyone suggested calling them back after we got a diagnosis, usually with a few references as to where we could go to get one.

But ultimately it was an attempt to save our own sanity that goaded us into doing something about it. After being told repeatedly by just about everyone that "all kids are different" and having our Pediatrician do everything but laugh in our faces at our concerns, we were starting to feel like everyone thought we were looking for problems where there weren't any. What was glaringly apparent to us somehow seemed to be missed on everyone else in the world. So to make sure we weren't just in need of some serious psychological support, we sought a diagnosis for Jacob.

Now, you would think trying to have a kid evaluated for Autism -- AUTISM for gads sake! -- would be met with a bit of urgency. Hadn't I just read pretty much everywere how VITAL "early intervention" was? How if you didn't do something right away, your child would be doomed for the rest of their lives? (Even in those early days, we didn't buy it, but that's the sort of frenzy everyone seemed to want to whip us up into.) Yet, all of the places that I had been refered to for Autism evaluation had waiting lists of insane lengths -- 18 months was the best offer -- 3 years was the most ridiculous. My boy had just turned 3, I certainly wasn't willing to wait another lifetime for him before he even qualified for any services! Everyone kept refering me to the "Birth to 3"program but, hello, he was 3 already, they wouldn't even take my phone calls. Insanity! We even, in desperation, called the school district (a pretty huge leap for us, considering that I had every intention of homeschooling my kids and would have prefered that the school district didn't even know we existed). I got the distinct impression that they, too, were procrastination experts, so decided if we were going to get this thing done, we were going to have to take the bull by the horns.

Just about that time, a nice child development grad student from the local university sent me a letter asking for our participation in her PhD research looking at the effect of parental interaction on a child's spoken language skills. I called her immediately and scheduled an appointment the following week. She arrived with her box of tricks and Jacob and I played for a while and then she did some language testing with him while I looked on. When she was done, she folded up her test book and, looking grave, gently told me that she would be unable to use Jacob and I in her study, as she believed that he was not a typically developing child. She reccommended that we see our Pediatrician right away, and gave me a list of things to mention to him that would hopefully set the wheels in motion in the right direction for us. The Map Man and I did a happy dance after she left, thinking NOW we were on to something! And look, we're probably not completely insane! An almost-PhD said so!

So we made an appointment with our Pediatrician. He walked into the room with a chip on his shoulder, as was pretty much the norm for him and I since he constantly insisted we should vaccinate my kids for everything under the sun, and I constantly wouldn't let him. (The only reason we were still with him was because no other Pediatrician in the area wanted a non-vaccinating family as clients.) With my first question, he shot me one of his standard "you are the world's most paranoid parents" responses, and I folded up my list of questions and apologized for wasting his time, and left his office forever.

That night at home we searched our HMOs database of phsyicians looking for the closest Developmental Pediatrician. Surprisingly, we found one just an hour from us, and I was delighted when I called the next day to find that she was accepting new patients. When I asked about a wait list for testing for Autism, the receptionist apologized that her firt opening wasn't for 6 weeks. SIX WEEKS!!!! Another happy dance of joy in our house that night!

The actual diagnosis was of course anti-climactic. She told us what we already knew, Jacob got his ASD diagnosis, and reccommended a laundry list of therapies including not less than 40 hours of ABA weekly, with a heavy dose of Language Therapy and OT with a Sensory Integration Specialist. She wrote a letter to our school system and convinced us that the only way to get anybody to pay for anything was to go the school route. We cringed, but sent the letter. And that's a whole 'nother chapter of our story. Posted by Picasa


At 9:34 PM, Blogger Gemma said...

I just found this blog about Jacob and, if I wasn't so darn tired right now, I would probably finish the whole thing tonight!! We just began RDI a month ago with our 4yo son and, boy, does he bare a striking resemblance (behavior and symtomwise) to your son!! Can you email me when you get a chance (and if you so desire)? I would love the opportunity to chat with you, pick your brain for a spell.

Thanks so much for the blog!! It's wonderful....a tad confusing here and there, but really wonderful stuff. I am just discovering myself about how important regulation is RDI.

Anyways, thank again and I shall look forward to hearing from you.
Very sincerely yours,


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