So what’s our story?
December 31, 2008
I noticed something unique about my son since I first began to feel him move around in the womb. He was my first child though so I wasn’t sure if this was unusual. He would kick and move so hard and fast that I would almost fall over. He seemed very hyperactive. When he was born, the nurses in the hospital said “your son has been awake for 7 hours, we have never seen a newborn baby stay awake so long after such a long birth”. But he was bright-eyed and seemed to be searching the room. He cried for the first 6 months of his life, we had to hold him continually for the first 6 months, could not put him down. I kept saying to people that I could see frustration in his eyes, he wanted to do things that a newborn wasn’t able to do and I could tell he would become more and more happy as he was able to do things on his own. Sure enough, he accomplished the major milestones early - saying his first words at 6 months, crawling at 6 months, walking at 8.5 months, and he became a very happy child.
I have a nephew who is severely affected by autism, his twin sister ADHD. They are 6 years older than my son. I knew to be looking for signs of autism in my son given the genetic history. I would talk to autism experts and ask them about little signs, if they were signs of autism. They weren’t signs of classic autism. In fact, he didn’t have any of those signs at all. But, I didn’t know about this thing called Asperger’s.
My son was always the child making the most noise, not joining in with what the other kids were doing but instead doing his own thing, exploring things, breaking things, taking things apart, hurting himself, hurting someone else, playing with the most unusual things vs. typical toys, throwing a tantrum usually because he was fixated with something, etc, etc. Other parents would look at me funny in public places like “why can’t she control her child”. Pre-school teachers wondered if I was disciplining him at home. I kept wondering what was wrong but the doctors said he was developing ahead of schedule and that he was a healthy boy, no signs of autism.
Finally, in his last few months of pre-school, everything hit the wall. His behavior was difficult to control and I was called to the school to pick him up quite often. It made him feel so sad to know that the teachers thought he was being a “bad boy”. It was really the only thing I got him to say about the experience except that he didn’t think he was being bad. I immediately called around to various places to try to get him evaluated. Lo and behold, everyone had a 6 month wait list and the ridiculous beauracracy we had to go through with our health insurance was enough to put a major barrier to getting an evaluation. Fortunately, I used to work in the health insurance business and I could navigate it - down to figuring out what codes they would reimburse, which ones to mention, which ones not to mention - god forbid if you even mention the word “autism”! We went through the process step by step and we finally got approved for him to get an evaluation. Now, we just had to wait the 6 months for an opening. In the mean time, we had solidified our plans to send him to a Catholic school for Kindergarten.
Evaluation day(s) finally arrived! We got into the UW CDHC for an evaluation first which I had heard was the best. He “passed” with flying colors the motor skill testing, the pediatrician evaluation, and mostly the speech therapy. They even started to wonder why we had brought him in! Talk about going in circles! Well, the first thing is a child with Asperger’s is usually much better one on one with an adult than he is around a lot of other kids. When my son is one on one with an adult, especially one that is paying such close attention to him, he is at his best. However, it wasn’t until we got to the behavioral psychology portion of the evaluation that we saw something. He had difficulty with auditory processing. He was very much a visual thinker. This would be problematic for him in school - where teachers do an aweful lot of talking at you. He was also much more interested in the wiring and HVAC system in the room and wanted to discuss this with the psychologist, not the testing! In short, they diagnosed him with “unspecified nervous system disorder”. Not very clear (we have since received a diagnosis of Asperger’s). But they were clear that he would need special services at school and assistance in the classroom.
We received his diagnosis at 4:30 p.m. and at 6 p.m. we had the first ice cream social for my son’s Kindergarten class. They were starting school in exactly 2 weeks. We decided that we were going to be open with the school about his diagnosis. Afterall, the strangest of coincidences, the evaluation team recommended we look for a school that was trained in Mel Levine’s “All Kinds of Minds”. We didn’t know what that was but we did know that his school invested in this training. So, we pulled the principal and his new teacher aside and told them what we had recently learned. They set up a meeting for the first week of school but felt sure they could handle our son.
To summarize his first 4 months of school: the school wanted to “observe” him for the first month and “see how it goes” even though we had offered to provide support in the classroom; after one month, the teacher was in tears as she had quite a handful of boys in her class and she didn’t feel she could help our son like she would want to; the school agreed to allow us to provide an assistant to the classroom; I had already found a great person for the job and handed them her resume and asked if she could start on Monday; after some starts and stops, the teaching assistant started in the class and very quickly things were progressing for my son and the teacher was much happier; our son was finally on track, progressing and happy; then the school called us into a meeting and said “you should apply to the Seattle Public Schools, this isn’t the direction we want our school to go, and he cannot come back next year for 1st grade”. What a shock, what a disappointment, and one of the saddest days of my life actually. I was raised a devout Catholic, attended Catholic schools all my life, was a member of this parish, and at a time when I felt I needed them the most, the Catholic Church was abandoning me.
Well after one day of moping and tears, I went to work (again). I wrote the Archbishop to let him know about our story and to perhaps spark some interest in overall policy change for the schools to help future kids - afterall, 1 in 94 boys will be walking through their doors. But then I moved on and decided that I wanted to find a school that “wanted” my son. I had already researched all of the other private schools in the area - they either wouldn’t take him at this point given his diagnosis and the enrollment timing, or they were specialized schools for children with disabilities. My son’s therapist was certain - he did not belong in a special school - he belonged in a mainstream classroom where he could learn appropriate social behaviors. Afterall, he had all of his cognitive abilities in tact and did not have learning disabilities. It was his social abilities that were lacking. Being with typical kids in a mainstream classroom was the best environment for him to learn how to navigate in a typical social world, and hence, be successful in life. We went through the whole IEP process and search for a public school. You can read my previous blog post to see what I think about that. We actually visited two public schools - one with an autism inclusion program and one with a low incidence inclusion program. Both were supposedly for high functioning kids on the spectrum. The low incidence program seemed like a good school, good special education teacher, but not enough support guaranteed to our son, which he needed and was identified in the IEP. The autism inclusion program was physical inclusion but not much else. When we visited the school, the front desk sent us to the “autism classroom” (our first red flag), the other children in that classroom were non-verbal, flapping arms, humming and there was zero verbal communication between them and their aides (second red flag), and in front of us and the district personnel, we observed the special education teacher and an aide drag a child with autism down the hallway screaming and crying - in front of peers in the hallway. It was so appalling to me, I was crying and I told the district “over my dead body will my son ever step foot into this school” and he never will.
All of this research, IEP process, and school tours occurred within three weeks of the schools decision. I was beginning to consider homeschooling our son. It was a very sad place to be - my parents had sacrificed so much to insure that I got the best education possible - now I’m in a position to provide that for my kids and I can’t find a school to take him! Suddenly, we received an email from his school requesting another meeting. To our surprise and amazement, the school had reversed its decision. Here’s what happened: Two days after their decision a few of the school personnel attended an auction for the Archdiocese. At that auction, they highlighted a small Catholic school in Seattle that had agreed to let a child with autism attend their school in Pre-school with an assistant in the classroom. That child was served by a behavioral analyst who worked with the school and the child went from non-verbal in preschool to not being able to be picked out of the class in 3rd grade. That’s all it took to help shed some light on what is possible for children with autism, and what a school can do to help this progress. The school did its research, met with all of the staff at the school, and decided they can do this. They asked us to consider staying and to help them set up a program. Of course!
We immediately sought out the behavioral analyst that was working with the other school. We introduced him to the school. We all got started right away. From there, it has been a joy to see the progress my son is making. I am forever grateful to this school and its staff and for the amazing support I have received from the entire community.
But, as any parent of a child with Aspergers knows, this is a journey that is taken one step at a time (and often there are even steps going backwards). I look forward to sharing my journey in the hopes that it might provide some support, comfort or resources to another family.
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PTFerguson
pjsmferg@gte.net
Bravo for your start in helping others in the art of teaching kids on the spectrum. Remember this is a “marathon”. Things change at kindergarten, third, and seventh grades, and high school years. I have 2 that are in their college years. It has been a difficult journey andfrustrating. Please keep sight of the goal line - adulthood and self-determination and independence.