Going to Neptune

0607161654bBack in the olden days–circa 1991–educators did not yet believe in inclusion for autistic children. Not the ones in NJ, anyway. When Alex was diagnosed at age 3, we were strongly encouraged to put him into a preschool program. We were okay with that decision; there was a public preschool program (half-day, mornings) for developmentally delayed, special needs children at the elementary school around the corner, one block from our home. Our three older children were enrolled there.

I was a stay-at-home mom and our other children were home with me until they went to kindergarten, so this was hard for me to let him go so soon. I was worried about so many things, especially because this was Alex.

The summer before he started, I worked very hard to get him potty-trained. We were successful with the urinating part, at least. I did NOT want to send him to “school” wearing diapers! I felt like that would have reflected badly on me as a mom. Shows you how young and naive I was. Luckily, he made it through the morning hours with no BM’s.

However, every afternoon/evening he would have these sloppy, diarrhea-like BM’s. It ran down his legs into his socks and shoes, requiring taking off everything and putting him in the bathtub to get him clean, and then putting fresh clothes on him. Knowing what I know now, I realize he must have had a lactose intolerance or some other food allergy to cause this. Anyway, he was not completely bowel trained until he was 6 years old. As we used cloth diapers back in the stone age (Pampers and Luvs existed, we just couldn’t afford them), when he grew too big and I could no longer make two diapers fit him, we began diapering him with receiving blankets at bedtime. Ahh, memories. That also makes me recall that we used to diaper pin his shirt to his pants, one in the front and one in the back, to keep him from taking everything off and running around au naturelle.

He did well at pre-school, keeping his clothes on and peeing in the potty there, except for constantly attempting to climb up whatever was the highest piece of furniture in the room. It drove his teachers crazy. Although it was difficult at first, he got used to me leaving him. He played with toys, just not with any of the other children. With lots of prompting, he participated in circle time, and whatever activities were going on. They taught him a few signs: food, more, help, later, please. Probably the best thing was that it was a few hours of respite for me, allowing me a much needed break from the constant monitoring of where he was and what he was doing every minute that he was awake.

He attended pre-school at the elementary school for two years. At the end of that time, we were directed to take him to a neurologist (again) for a diagnosis (again), for purposes of determining what special education services he would receive when he turned five. The experience with this doctor was different from the original neurologist we’d seen. Whereas the first one barely looked at Alex and seemed to base his determination of “PDD-NOS” (pervasive developmental disorder–not otherwise specified) almost solely on my answers to his limited questions, this second doctor actually spent an hour observing how Alex behaved in a room with toys, games, books, and puzzles. She ultimately labeled Alex as having “classic autism”.

So with that, we went to the IEP meeting, and guess what? They could not handle a child with “classic autism” at our local elementary school. We were informed that the school district would pay for him to attend a special school in Neptune, NJ–over an hour’s drive from our home! I was flabbergasted. They actually wanted me to send my five-year-old child who would not even be able to tell me about his day, to ride a bus an hour each way, to Neptune?!

It took some getting used to the idea. Was this really the best thing for him? I supposed it was a good school; it was staffed with “special education” teachers, after all. Maybe it really would help him–get him to talk, to tie his shoes, to play with other kids, write his name, learn how to do all the things that little kids do that he wasn’t doing. I felt confused and distressed. Seeing no other viable alternative at the time, my husband and I decided to send him to Neptune.

The first two months we weren’t seeing astounding progress or anything, but he seemed to be okay with getting on the bus each morning, so I figured that must mean something. Plus, I’d get little notes from the teachers telling me what was going on. Things were going alright until the day the school nurse called. She told me Alex was sick and that I needed to come pick him up right away. Oh, great. We had one car, which my husband had taken to work. For some reason, he couldn’t leave work and come home to let me use the car. I phoned several friends before I found one who was available and willing to drive me (and my youngest, Rose) the 100-mile round trip to get Alex. I felt like crying all the way there. I was upset about inconveniencing my friend this way, thinking about Alex being sick, and so far away, and worrying about both of us getting back home in time for our children to return from school. It was a horrible experience.

That was the day I started to consider seriously doing a home program for him. Alex had started at the Neptune school in September. In January we pulled him out of school and I began his intensive one-on-one Option home program. He had his sixth birthday that month.

I liked having him at home with me. It never seemed right to have such a young, vulnerable child have to go so far away from home to find the “least restrictive environment” (one of the terms the school people liked to throw around). Having him home was the least restrictive environment, in my opinion.