3.09.2004

Leelo's Evaluation

(Apologies, I have been too wiped and emotional to write or talk about this until now. I still don't have the energy to choose a verb tense or write tidily.)

Leelo's Stanfford evaluation went well. Amazingly so, considering that he had a brown crusty infection in his left ear (go myringotomy! Otherwise he would have been in too much pain to function!)

On Thursday, I met with Dr. Simpson for a one-hour review of Leelo's history. Leelo happily played in the background, and shocked me by pretending some action figures were riding dinosaurs, right in front of the good doctor.

On Friday, Dr. Wilson came and spent three solid hours giving the boy cognitive and verbal tests in the form of simple puzzles and picture identifications. I must say that having an ABA-trained kid was a bonus, as when he got tired during the final hour, we were able to coax more responses out of him using raspberries as reinforcers.

There were lots of excellent surprises: watching him rip through some of the puzzles I thought he might not get, identification of items I thought he didn't know. Lots of frustrations as well, because the tests used specific language and some badly drawn images, and there were many questions he could have answered correctly. I guess this is kind of the point, though.

Part of the testing was an hour of structured farting around, during which Dr. Wilson gauged Leelo's play skills (Dr. Simpson came and observed for this portion, and Leelo wowed him with a "Hi, Dr. Simpson!" They boy's got a knack for faces). I bow before Leelo's ABA therapy team--because of them, Leelo not only knew how to have a pretend birthday party for a baby doll, but he spontaneously pretended to feed Dr. Wilson some playdoh "cake."

Thoughout the testing, Leelo was stimming frequently, both verbally and physically. This was additionally stressful, even though it didn't affect his performance. And anyhow, we wanted their professional opinion on those behaviors, and that would have been difficult had said behaviors not been present.

When the testing was finished, the good doctors released us for an hour. I decided, what the hey, I would go get myself a nice lunch at the cafe across the street, and maybe have a glass of wine to help counter the tautness of my every tendon.

It was not to be. The host seated me next to Seymour's aunt. I don't know her that well, so instead of de-stressing I got to spend the hour doing the kind of brittle socializing that gives me instant tension headaches.

Back to the clinic. Seymour joined us for a 90 minute discussion of the doctors' findings. Which were:

-They consider Leelo to be high-functioning. If you're going to have an autistic kid, this is as good as it gets.

-Leelo is definitely not retarded. This news made me cry, because in November our local regional center had given me a choice of diagnoses for Leelo: autistic or retarded. I truly had no idea how to gauge whether or not the retardation diagnosis was appropriate.

-His verbal skills are at 27 months, and his cognitive skills are at 33 months (he is 39 months old). Again, more sniffing. I was just hoping he'd hit 18 months. I'd no other yardstick other than the "what does your XX month old do" charts, and 18 months was the highest level he'd entirely mastered.

-They think a lot of his stimming happens because he lacks truly functional language. They anticipate that, as his language skills improve, the stimming will decrease. If not, we should at least be able to negotiate with him about appropriate settings for such behavior. Both doctors said it was highly unlikely that the behavior would persist to adulthood.

-They think he will acquire total language. (This is based on their observations coupled with his progress so far: they actually went through the inch-thick stack of medical and behavioral reports I'd prepared for them.)

-Our home program is exactly what they recommend: 25 to 30 therapeutic hours per week, mostly ABA.

-Leelo should have a neurology exam (already scheduled) and a high-level chromosome scan to rule out genetic causes such as Fragile X.

-We need to get our butts going on his IEP.

-No rest for Leelo. Push push push his little butt and keep on him, make him communicate, make him think. He's able to do a lot more than he lets on.

-Bring the boy back for a re-evaluation after he turns five.

I think that's it. Whew. They're going to send us a formal report in a few weeks. In the mean time I am getting Leelo lots of new puzzles.

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