The Henry Chronicles, Volume 3

(Sorry that this is sooo long. But it's very helpful to me to get it all down, even if none of you want to wade through all of it!)

Let's see, I left off around December, 2002, when Henry was 3 1/2. He was evaluated by the school district's speech and occupational therapists, and determined to be a "preschooler with a disability." I can still remember how that meeting made me feel. My husband and I sat at a table of experts who gently tried to tell me all the things that were "wrong" with my child. (That's how it felt to me at the time. Now I'm a veteran of these meetings and I know that we are all there with the goal of helping Henry achieve the most out of his education.)

I think that was the day my heart broke a little. That was the day I first realized that my son might not be everything I hoped for him to be. He might not be president. He might not be the football captain and all those dumb ambitions you have for your child before you realize what's really important. Most of all, it made me realize, like a slap in the face, that he wasn't "perfect." Now, you can all tell me that he is perfect, and I wouldn't argue with you! But let's just say that was a bad day. And no one had even mentioned autism. Instead of going back to work, I went back home and crawled into Henry's bed and cried. Is that a pitiful image or what?!

So Henry qualified for special services. But I work full time and he needed full-time care as well. This was to prove an obstacle for the next 2 years.

I work at a large university, which has a child care center with a waiting list a mile long. A friend with a child attending the center told me that she thought they offered special needs services there. (Thank God for all the suggestions of friends, or I don't know where I would be now.) I was thrilled to find out that he could attend the center full time, receiving special needs services, and at a reduced rate, as my school district would pay a portion of his education. He started preschool there in the fall of 2003- when he turned 4 years old.

Henry did well at preschool that year- I was amazed with how he adapted to the routine and the independence required- lining up to go outside, scraping his plate after lunch, going potty independently, etc. He loved working with his therapists and with specific teachers. He's always been very responsive to one-on-one stuff with an adult. Not so crazy about all the other kids. The services provided were on an "itinerant" basis: he was in a room full of typical kids, pulled out for services once or twice a day for an hour or so.

That summer (because he wouldn't receive school-based services in the summer) he attended a program at Easter Seals. That's where he started taking swimming lessons. He seemed to do really well there- in a class with only "disabled" children of various kinds (there were blind children and autistic children and children in wheelchairs, etc.), and teachers who were trained to work with special needs kids.
At the recommendation of his teachers and therapists, I pursued an evaluation at the autism clinic in our Children's Hospital. Of course, it took months to get an appointment.
Fall of 2004 was rough. Henry went back to preschool and started off well, but his "behaviors" quickly escalated and overpowered any other learning that might have been taking place. He was very aggressive toward teachers and other children: knocking over chairs, kicking, pinching and scratching. I believe he was trying to communicate. These behaviors were aggressive, but not violent, if you see the differentiation I'm making. They were very deliberate- done while looking at an adult, watching for a reaction.
The special needs teachers were willing to work with it, but that wasn't good enough. As I said above, they were only working with Henry an hour or so a day. The rest of the time he was in this classroom where the teachers didn't want to or didn't know how to work with him. They mostly let him work on the computer all the time, because it made him happy and it kept him away from the other kids.
There were a few days in November of '04 when I brought Henry to work with me because I was so tired of picking him up and hearing "He had another really bad day today."
Believe it or not, at this same time I was meeting with the doctors at the autism clinic and hearing "we don't think he's autistic." It's true. So his teachers are acting like he's unteachable and they're going to kick him out of daycare/preschool, but the "experts" are saying he's not autistic. It was a really low point for me.
Finally, during one evaluation, Henry threw such a fit. I was terrified that they would just tell us to leave and come back in a month, dragging the whole process out even more. I was watching through a mirror as Henry threw toys around the room and scratched the psychiatrist's face!
Little did I know that that interaction would finally show the doctor Henry's true colors. His "non-compliance" (that term made me laugh out loud when the doctor used it) was an indicator of autism, along with some of his other traits.
Reading about all of my blogging friends' children, I don't know how a doctor could NOT think Henry was on the autism spectrum. But, I can't be bitter- just have to move on.
I'll save the rest for another installment.