This may get heavy, I apologize in advance. No I don't. Piss off. That's better. Or not. I might go full asshole in this post. Hold on to your seats everyone, it's the story of an autistic little boy and his father. With cameos by the ex-wife, the kickass new girlfriend, the other kids and almost Sean Connery. (I'm listening to Bob Dylan, currently "I Shall Be Free", so I'mma be a little goofy and introspective)
So, let's start with that little boy. His parents separated at a young age for him. He had just passed three years old when his mother left. I'm not sure how this affected him. I've tried to talk to him about it at times, and it seems he doesn't remember the separation itself or what the family was like before. This is most likely a good thing.
Now, this three year old was an impulsive and demanding little boy. Already receiving services from specialists for vocational and speech therapy. With this help, he progressed rather quickly, and graduated out of those services in around a year's time.
This little boy, we'll call him Sam (not his real name, those who are important to him and myself know his name, and that's good enough), had a wonderful daycare provider, who, unfortunately for us but spectacularly for her decided to go back to school. She was and is a wonderful person, with whom I am still friends. Sam's next daycare provider actually had a similar situation and he was only with her a short time.
Thinking my luck with daycare providers couldn't get worse, we contracted another one. This woman was...I'm trying to be nice here...not great with children. Or, well, to be clear, not great with Sam. Sam had, and still does have, impulse control issues. Sam tends to over-react to situations and escalate them past reasonable logic.
We repeatedly had stories from the daycare provider, we'll call her...ummm...Becca, about Sam having physical altercations with other children. Minor stuff, but still troubling. Becca would simply punish with a time-out and that would be it. We would talk to Sam about them, and it would always be "Well, so and so took something of mine, so I took it back and called him poopface (or something similar)". However, one day at pickup, Becca told me that Sam would not be allowed back. Another child had pushed Sam to the ground and Sam retaliated with a punch and a bite. An unreasonable and scary over-reaction to the initial stimulus.
Luckily we were able to find another daycare provider, one that was familiar with smaller children. Sam still had some issues with other children, but these providers, a husband and wife team, always worked with Sam on the problem and tried to instill coping strategies in Sam. By the time he was 5 and kindergarten was nearing, Sam seemed to be rather well-adjusted and his over-reactions, while still extreme, were manageable and fewer. It was quite evident to see them coming and to be able to reroute him to a more reliable attitude was becoming rather simple, 95% of the time. His mother and I were confident that he would no major problems in school.
That fall, Sam started at Genessee Elementary. Now, I had already put two kids through Genessee, and knew going in that it was a rather...particular school. I've never seen a school that is so different an experience based on how effective a pupil a child is. Good pupils seem to prosper at Genessee, while middling or poor students are handled with less effort and patience. This is an over-generalization, but there are concrete examples of this I could provide. This isn't the space for that. Just know that my daughter, a middling student with no love for school, had periodic issues with certain teachers (including one that wanted to hold her back a level because she hadn't lost enough baby teeth). The approach teachers took with her, mostly, was to just get her through. Bare minimums. My son, a very good to excellent student, except for one teacher, had a simply marvelous career at Genessee, one that they nurtured extremely well. His growth was fostered along by caring and motivating teachers.
Sam's experience...has not been the same. I'm going to start this by saying, it's not the teachers. It really isn't. Sam's teachers, minus kindergarten, have been very good and have tried their hardest to understand and work with Sam.
Sam started kindergarten excited and eager to go to school. This continued all the way into February of that year. We had heard of small issues, like talking too much. Simple stuff.
I need to break into the story here for a minute and say that the ex-wife and I co-parent Sam quite effectively. Rarely are there disagreements, and we are able to solve this without issue. We are both involved and proactive parents.
In February, after winter break, it seemed like a switch had been flipped with Sam. He was becoming intolerant and getting physical with other students and teachers. It was a massive change in his demeanor towards school. At home, he was typical Sam. Issues from time to time, but nothing that had ever progressed to a physical level.
His teacher grew very agitated with Sam, rode him. He was a behavioral nuisance for her, and she treated him as such. She seemed to have no desire to talk to Sam about the issues, or to attempt to redirect him. Her accusations towards his mother and myself satisfied her own internal storyline as to her problems with Sam. We were constantly accused of having a constantly-changing home life, causing him problems. Sam's home life, as far as he was concerned, had never changed. We told her as such. Later on in the year, I was accused of beating Sam by the principal. This was patently false. Sam has a birthmark on his cheek right in front of his ear. If you are an idiot or have incredibly bad eyesight or are trying to dignify an internal narrative, this birthmark could be construed to look like a bruise.
I've never beaten Sam. I've never even considered it. He has pushed me, trust me, I make no apologies for him. He knew, and still knows, how to push my buttons. Sometimes I feel he does it purely for fun. Nothing about this has made me think about beating him.
Needless to say, this conversation with principal gym teacher was...not constructive. Trust me, principal gym teacher is a perfect name for this man. He has typical little man syndrome, always walking with his arms blown out and his chest puffed up. Like he just 'got his pump on' as Mac from Always Sunny would say. His shirts were always at least one size small so they were super-tight, and I'm not sure his knees actually bent much when he walked. I imagine him in his free time wearing nut-hugger shorts and muscle tees. Probably wears one of those weightlifter belts. All. The. Time.
Sam's kindergarten ended poorly. But, it ended, and the principal moved on. To a gym teacher position at a neighboring district. Who knew?
Over the summer, we backed off on Sam a bit, really to let him relax and to hopefully have him encouraged for the fall semester. By the time he left kindergarten, he passionately hated school and everything about it, in it, near it, or under it.
We also started talking to Sam's doctor about therapy for him. We decided to see how the new school year progressed before engaging with a therapist.
Sam's first grade teacher was a young woman who ran a very regimented and practical classroom. We met with her before school and talked about Sam, and I came away impressed. I believed that an environment where Sam knew what was coming and what was expected every day would be good for him. It always worked at home (timers at the time were used extensively with him, and he embraced it). We shared with her techniques like this that worked for us, and she was very receptive.
It took about two weeks of talking to convince Sam that the new school year could be different and his concerns were unwarranted. We finally had him ready, not eager, but ready for the new school year. It was rocky from the start. Instead of embracing the scheduled approach, Sam seemed to rail against it and his behavior consistently escalated. His mother and I worked with the teacher extensively, and she worked with him, to little effect. We supported the teacher's concepts at home, and she in turn tried to apply our suggestions.
Mostly, nothing helped. In October we decided to pursue a therapist and contracted Dr. Barnell (not her real name). By this time, a new principal, Principal Goings (not her real name either) had started with Genessee. She seemed extremely energetic and progressive. Very hands-on with the students. I was impressed with her at the time, and hopeful.
Sam and his therapist worked together. She told us that she felt that he was mildly autistic and definitely has a sensory disorder. Aural predominantly. Sudden loud sounds or a constant loud background din are very unsettling for Sam, and can be a definite step on the road to impulsive behavior for him. However, not being an autism specialist, she wasn't confident in making such a diagnosis, so while still seeing Dr. Barnell, Sam's mother and I started the looooong process of getting him in to such a specialist either in Syracuse or Rochester.
Meanwhile, things at school deteriorated. Principal Goings, for the second time at Genessee, accused me of beating Sam, this time with the School Resource Officer at her side. I, once again, explained that her 'bruise' is actually a birthmark. I even had the teacher come in so she could explain that yes, Sam had that mark every single day.
I was starting to lose my confidence in Principal Goings.
Shortly thereafter, PG (Principal Goings from now on) ran out to my car as I was leaving after dropping Sam off at school. She seemed very excited, like she had finally figured something out with him. She yells out from about 15 feet away, "I think Sam is autistic!". I quickly walked over to meet her so we weren't shouting my son's personal health information across the yard. I said, "Well, that's pretty good, actually, as Sam's therapist feels the same way, and we're in the process of getting him with a specialist.". She replies "That's great! I knew it. Just like that show on NPR said!".
Confidence-- (that's a C/C++ joke)
"Excuse me?" I said.
"There was a show on NPR last night that I listened to. They explained autism and it's just like Sam!". Ugh. She's making a diagnosis based on an NPR show? I was starting to wonder about her.
Sam was still having behavioral expressions at school. Physical, sometimes even truly violent altercations. Specifically with teachers.
Any parent who was tried to get an appointment with a real Autism Specialist knows how hard it is. We had gone months by this time with very little response from either center in Syracuse or Rochester. In the meantime, Dr. Barnell had agreed to make a 'provisional' autism diagnosis, so that Sam would qualify for extended help at school.
That helps starts by forming a CSE. That's a Committee for Special Education. The committee is usually formed of the teacher(s), a member of the administration, a special education teacher and the parents. The parents can also include an advocate for the student, and we also included Dr. Barnell. The CSE committee has a chairperson, usually someone in the Special Ed department for the district or the local BOCES. Our chairperson is Principal Goings. It's damn irregular to have the principal on the committee and a blatant conflict of interest to have the principal as the chairperson. However, in the interest of really working as a 'team' together, we didn't share any concerns about her place as the chair. This was a major mistake on our part.
(Ok...this is happening in parts...I need to go pack some stuff and the music Pandora is pushing has perked up, so I'm feeling like being productive. Part 2 probably coming soon. With almost Sean Connery)
