What We Did After We Found Out

Doing my best to remember without any notes..

After Samuel was diagnosed with autism, at 2 years and 10 months, he attended speech therapy for a year before we put him in school. One of the first things we were taught was to teach Samuel to point at things. At about the time he was diagnosed he was not verbal and he had just started leading us to things he wanted and was putting cups in our hand when he wanted a drink. I observed many of Samuel's sessions and they involved a lot of playing at a table. He sat in a booster chair at the table.

Samuel also attended Music Therapy during this year as well. I have a videotape of some of his sessions and it is such fun to look back on it now. He was such a cute 3 year old! The activities involved turn-taking and responding to simple questions. He loved when he got to play on an electronic keyboard and strum a guitar. During this year he had a short spell of going through "separation anxiety" when I left him for his sessions. He was three years old and I'm trying to remember, I think neurotypical children are maybe about half that age when they go through it?

When Samuel was almost 3 1/2 a new baby brother came along. Much to my surprise there were no jealousy issues from either older brother. I realized 4 months later, when my oldest son was starting "kindergarten" at home, that I just couldn't leave Samuel parked in front of the TV all day and I just didn't have the know-how or the energy after dealing with everyone else, to be able to engage him in any meaningful activity. I contacted the local school system to start the process of evaluating him. The program offered to us for Samuel sounded pretty good and I had no problem with him attending it the entire 4 1/2 hours per day.

Samuel did wonderfully at school right away. He was pretty mellow and compliant the first few years. He was fortunate enough to have the same special education teacher for 4 years! He was in Pre-Kindergarten for 1 1/2 years. After Samuel's first year the teacher encouraged us parents to work with our children at home. She showed us some drill work to do, which we used to do seated on the floor in the kid's playroom. I am so grateful to this teacher for showing us this, it laid the foundation for doing homework with him, as I try to do regularly now.

In kindergarten he participated a bit in an inclusion class. Due to some staffing difficulties I would say that it wasn't all that successful, but things improved greatly when he started first grade. I was very happy with the aids and the special education teacher. Except for lunchtime and some time for sensory activities, he stayed in the inclusion room all day, along with 4 or 5 other autistic-type children. He did quite well in reading, which I was very happy about. As first grade ended he started to assert his temper a bit more at school, but nothing all that serious.

At home was a different story. Samuel was becoming very difficult to manage. I was dragging him around to get him to do things and he was starting to become a bit aggressive when he was asked to do things that he didn't want to do. To make a long story short, we were able to obtain in-home services for him. He has learned to follow a visual schedule and that along with a few other techniques have helped smooth many stessful situations here at home. He has a ways to go, but he is slowly learning how to control himself when he gets upset.

Now Samuel is in second grade and this has been a very different year. His special education teacher left for a new school district. I like the new teacher, but she is a bit short on experience so I have had to be much more vigilant in keeping up with Samuel's work. Actually, this isn't all that bad, I probably should have been more involved and asked more questions in previous years.

This is a very brief summary of what we have gone through the past few years. Like all families, we have our ups and down, but I will say that for right now things are pretty good at home and at school. We do have challenges, but I feel like I have some good tools and strategies (that I learned from our in-home service providers) to work with Samuel. I'm doing my best to avoid putting Samuel on medication, but as he ages if it looks like he has anxiety trouble then I will consider it. I'm trying to help Samuel learn to communicate and to help him develop some interests. If left to his own devices he can drift off a bit.

How We Found Out

Samuel was born in early 1999. His older brother was 16 1/2 months old when he was born. He was a BIG baby, almost 10 1/2 lbs. Ironically, he is the only one of my 4 children that I did not deliver by C-section. I suffered a 4th degree tear and my poor body has never been the same since then!

Samuel's development was quite normal for the first year, he hit all his baby milestones like sitting up, crawling, and walking within the normal range of age. He had a very sing-song type of babbling.

He was not talking when he reached 2 years old, but we didn't think too much of it because his older brother did not start talking until after he turned two. The only word Samuel had ever said was "cheese," which he only said several times when we were about to get cheeseburgers for lunch. He only repeated it after I said "cheeseburger" and after a few weeks he wouldn't say it at all.

We began to notice, a few months after his second birthday, that he did not play with toys in the normal sense. He would stare at them, pick them up and drop them, press buttons repetitively. When he was outside in our back yard he would either run around the perimeter of the yard or he would sit and pick up/drop handfuls of dirt repeatedly.

My mother expressed concern to me about Samuel's behavior when he was about 28 months old. She suggested that I take him to a doctor. I waited about 5 or 6 months after that, just to see if Samuel would get more "on track" with his development, but he did not. I started at our family practise pediatrician. She referred us to a university hospital and we saw a developmental pedicatrician. After about a 5 minute observation he gave Samuel a diagnosis of "autistic spectrum disorder." I was not surprised to get this diagnosis. I was a bit relieved because I was tired of wondering as I had been doing for almost 6 months. It was suggested that I contact our county's early intervention program. We also saw an education specialist at the hospital and she suggested that we put Samuel in some kind of school setting that had a big focus on developing communication. We did begin speech therapy and he attended a weekly music therapy session at the time, but I did not contact the school system for an evaluation until after he was 3 1/2. I realized after 10 months that I could not set up a sufficient teaching environment for him at home. I must say that the biggest disappointment I have had in dealing with autism has been the lack of information out there for parents who have just gotten a diagnosis for their child. I was very interested in working with Samuel at home, and all directions I was being pointed in involved sending him off to school.

To be continued....