Just realized that this blog is a little sketchy on the details of our ABA program. Well, that 's because we're still setting it up. Here's how we arrived where we are:
- Early September 2002 (Leelo 21 mos): Pediatrician friend notices that Leelo doesn't make much eye contact. Suggests that further evaluation wouldn't be a bad thing, couldn't hurt. I freak out. Seymour says no worries, the boy's okay.
- Late September 2002 (Leelo 22 mos): Take Leelo to his own pediatrician for ear infection #12 or #13. During appointment ask pediatrician if Leelo could be autistic. Pediatrician says "Let me tell you what an autistic kid is like: screaming, no touching, rocking, basic stereotypes." Leelo smiles at pediatrician and lets him look in ears. Okay, the boy's not autistic. Could he get ear tubes then? Pediatrician: Let's talk about it if he gets another ear infection. And if you're really worried about his behavior, here's a local kiddie head-shrinker. Talk with her, but do it fast as your insurance doesn't cover her. Oh, and a hearing test wouldn't hurt. Go see the fine folks at Stanford.
- October 2002 (Leelo 23 mos): Local child psychologist with credentials and experience up the yingitty-yang says, hmm, he's really little. Let's chat in 6 mos. The lovely, kind folks at the California Ear Institute note how consistently he looks at that crazy noisy monkey reinforcer. He has no hearing problems.
- November 2002 (Leelo 24 mos): Leelo starts local co-op nursery school. It is fun. He is youngest and littlest in class, and so shouldn't be expected to talk and play at same level as the other kids.
- December 2002 (Leelo 25 mos): After four weeks of classes, Leelo's teacher says honey, I need to talk to you. Your boy has language and social delays and needs to be evaluated. I now hate and resent this woman, but follow up on her referral the very next day. I get an appointment with a local speech pathologist--in three weeks (this will be a recurring theme).
- January 2003 (Leelo 26 mos): Speech pathologist says um, yes, delays. Let me refer you to our local Regional Center (county evaluator and funder of programs for children under 3). They will fund a small-group language skills class for him. I say, can't we just start him in the class right now and pay for it? They say, well, no, it's really expensive, and the evaluation process won't take that long. Off you go! With no other information or support. I am starting to fret in earnest now.
Track down overworked but kind social worker. Two separate appointments, with the first to happen in three weeks. First one at home with the social worker, second one at the regional center with a specialist MD.
I am not waiting a full six months to regroup with that psychologist. Series of expensive meetings and evaluations to start in three weeks.
At this point I also freaked out on my amiable but less-than-proactive pediatrician and jumped ship to a new one who said yes, let's put tubes in posthaste--go see this really nice ENT (ear, nose, throat specialist). In--say it with me now--three weeks.
- February 2003 (Leelo 27 mos): Psychologist says, maybe 40% chance it's autism. We just don't know. Any additional advice? Well, let's wait awhile. My fret meter goes up a few more notches
Go to the regional center, where the doctor plays with Leelo for 35 minutes or so, then turns to me and says "If he was 3, we'd call this autism. The social worker will give you additional information. Must go, I have to diagnose 5 or 6 more kids today." (So, not a bad man, just an overworked one.) Still, I just got hit by a truck and basically have to figure out how to scrape myself off the ground. A packet of information is thrust at me. Too bad, my eyes don't focus right now.
Social worker says, hey, let's set you up with those small-group language classes at the local school. You mean those ones I wanted to start last month? Yes, those ones. But the regional center will pay for it. First you need to go back to the school and have an intake evaluation. Didn't I already do that? No, that was a regular evaluation. Intake evaluation to be in three weeks.
ENT says yes indeedy, ear tubes for this poor little guy who just had two more ear infections. Head X-rays first (ever tried this on a non-verbal two-year-old?) to make sure he doesn't need those adenoids out too.
- March 2003 (Leelo 28 mos): I spend a lot of time working through various grief stages. Get stuck a lot on pure grief, as no one has told me anything other than that my son has a severe, life-long handicap.
Language school intake evaluation is fine (minor social delays, moderate language delays). Leelo will start the first week of April.
X-rays reveal no adenoidal issues. Ear tubes go in the first week of April.
No one knows what's going on in our lives except a few dear friends. We don't even really know what's going on.
- April 2003 (Leelo 28 mos): Ear tube surgery is a breeze. Leelo recovers in hours
School begins. One-and-a-half hours, twice/week. Leelo doesn't get the highly structured routine yet, but he's generally okay with it.
First day of April: I get pneumonia. This is a bummer as Seymour and I are supposed to go visit my cousin MD in Japan in two weeks. I am bedridden and use the time to search amazon.com for best-selling books on autism. Catherine Maurice's Let Me Hear Your Voice arrives, as does Karyn Seroussi's Unravelling The Mystery of Autism. This is how we discovered ABA therapy. What the hell? How is it that not one of the professionals we've talked to has told us about ABA therapy? Or dietary approaches? What the FUCK? .
- So, that's how we got where we're going. That's why I'm raging on here. Just in case there's a chance all this ranting helps a family in need find out about these therapy options months sooner than they might otherwise.