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Autism and a Boy

part one

 Jillian Parker
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 Jillian Parker
Autism and a Boy
by Jillian Parker  FollowFollow
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My words are not written from the edge of a knife. They ooze from between my fingers like mud. There are seeds there, organic filaments composting....read more My writing is full of semi-permeable membranes. I have worked as a medical interpreter, lived in the former Soviet Union; currently, I am employed as an analyst. Numerous times, I have been lost in translation. I have five children. One of them is diagnosed with autism. He is a genius. I have been blessed with an overabundance of genes inscribed with a secret code that spells "mother", and this drives me to continue functioning throughout the shipwreck of what popular culture names a personal life. My pain, your pain erodes the glacier that is my heart. I am melting.
Autism and a Boy
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1. Notes From a Young Anthropologist

Gung ... gung ... gung! I like to sing this note. I need to sing it some more to see if I remember it correctly. This is the loud song that the kindergartners hear in the morning while they are lined up in a row on the sidewalk. When they hear this, they immediately follow their teachers into the classroom.

Then the teachers have the kindergartners put their lunches onto a cart. Mom sends my lunch in a paper bag. Today it was an apple, grape tomatoes, cheese crackers, a drink and a plain crunchy granola bar. I am allowed to eat in a quiet room. This is my favorite part of kindergarten some days.

When I get home, I create my own re-enactments of the day. This helps me to deal with the overwhelming amount of new information. On the playground I practiced the incantation which the music teacher uses every morning over the loudspeaker: "I regiayegancetothedog .....uninintatistaysameriga......." I think I got her rhythm down pat, but Mom might have translated the incantation differently: "I pledge allegiance to the flag ...."

I try to share my game with Mom. Today I showed her that I had made a pretend "campfire" out of grass on the playground. “Miss Kathy asked if it was a campfire. I said yes."

Each kindergartner owns a packet of colored cards. For some reason, the green card is considered the best one. At home, I created my own cards, ripping pieces of white paper and gluing them onto the kitchen cupboards, but in my kitchen kindergarten, the most important card is blue.

I have begun gathering a bag of my train toys and taking them to the kitchen. I announce that "it is free choice time and I will play with trains." I usually build a nice figure eight. Don't think that I don't notice that my sister takes the whole thing apart while I am at kindergarten.

I do not need to practice the poems that are sent home in my backpack. I can read most of the words, and if it wants to, the poem will erupt out of my mouth: "Three little kittens they lost their mittens and they began to cry ..."

But the really fun poems those teachers have taught us are ones like this: "A dot, a dot, a dot will do. More than a dot is too much glue." I know that if I repeat that one enough times my third sister will howl at me with frustration. But if I sing out, acting out a zipping movment in front of my lips, "Zip it up, lock it up and throw away the key," Mom will giggle. I like it when she giggles.


While the whole class painted gingerbread men with smiling faces, I was the only one who painted a gingerbread man with a frown and lots of tears peppered all over him. I told Mom, when she asked about this, that "he had lost his bu'n (button)." Really, painting tears is so much more fun than painting a smiley face!

We visited a friend's new house. It was almost empty of furniture and had tall white walls. I remembered running back and forth with Mr. B in his big room which they called the gym. "Between two walls, between two walls!" I yelled, running back and forth, back and forth in joy.

And now, I'm going to get back to a truly important activity, like spinning around as fast as I can on my new indoor swing.

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2. Immersion

A few months before my son received his official diagnosis of mild to moderate autism, I began researching his symptoms on the Internet, and the reality of his condition began to dawn on me. What the lady from the Early Infant Learning program had guessed but not told me , when she was assessing him. Autism. Symptoms. Treatment. I began reading every book I could find about autism, from the old ones that psychoanalyzed autistic children (horrifying!) to research with dolphins, to descriptions of institutionalized autistics, to the autobiographies of autistics such as Temple Grandin and Donna Williams. Reading them, I cried and laughed at the same time.

I immersed myself into this world much in the same way that I had immersed myself into Russia while I was learning the language. I read, slept, ate, and drank autism. ASD, ILP, IEP, ABA, ADOS, SLP, OT, PT, RDI ... I learned the alphabet soup. I talked with as many parents as I could find in my area who had autistic children. I read and read and read on the Internet, found all of the titles I could at the local libraries.

When the smiling psychologist handed me the report recommending "at least twenty-five hours a week of intervention", and with the same smile, gave me handouts describing all of the major interventions available: Floortime, Applied Behavior Analysis (ABA), TEACCH, Social Stories, I thought perhaps someone would tell me where I was going to find this twenty-five hours a week. I waited for a couple of weeks. Nothing happened.

I began to make phone calls. I found out there were wait lists to even get into speech therapy. I put my son on every wait list. I kept him as busy as I could. I began consciously to observe his behavior, and take notes. Finally I found a speech therapist and occupational therapist (OT) who could both come to our house once a week. Since Infant Learning had no available therapists, they told me I was doing the right thing. I began a campaign to find any way for my son to get as many hours as I could per week. I filled out mountains of paperwork, wrote a grant request, found out by trial and error that Medicaid would allow more than one therapy session per week. My goal at first was to have one therapy session a day, in the morning.

The sessions were not easy at first. Many times, it took both the therapist and me to get my son to attend to whatever the OT or speech language pathologist (SLP) wanted to do. We did a lot of play therapy. Then I lucked out and found a SLP that could do two sessions a week, who used the Picture Exchange Communication system, a visual schedule, and was familiar with ABA. We eased my son into working in a therapy chair, and into doing circle time with myself and his baby sister, who sat in a carseat.

I planned to start a home ABA program at the same time that my son entered special needs preschool. I pleaded with the school district to assign him afternoon preschool so that I could keep all of his morning therapies. He also started an intensive morning preschool language therapy program. The first time he went, it took two of us to get him to take part at all in the session. There was a lot of kicking and screaming on his part, because he really couldn't understand what was expected of him. Beginning the ABA program at the same time was the best thing I could have done for him, because he had structure and instruction coming from all sides, and he had huge breakthroughs suddenly in imitation and attention. With all of the programs added together, we began to approach forty hours a week of interventions.

It was only after my son had begun the intense program that my mind began to wrap around a more full understanding of the necessity of this type of intervention for an autistic child. The behavioralist had explained it in her training of my team members. An approximation of what she said is, "For some reason, the connections between the dendrites in the brain of an autistic (which are necessary for all learning) do not automatically occur. So we have to coax the dendrites into speaking with each other." She made hand motions so we could visualize this process. In the first five months of the intense program, my son progressed at least one and a half years linguistically and cognitively, according to his evaluations. His diagnosis changed from a severe to a moderate communication disorder. Like Swift's Gulliver, the therapists, teachers and family members were slowly wrapping their ropes around him and tying him to the world we live in.

My home program volunteers did not do ABA by the book for long, but I don't feel guilty about that because they used the time for teaching (the ABA book helped), and they were reaching him.

When I first came to stay in Moscow, Russia, one of my friends told me: "We're going to take you to see Babylon". (I think he meant Babel, as in the Tower of Babel). "Babylon" turned out to be a railway station, where I saw hundreds of people walking back and forth, in and out, up and down, hundreds of voices surrounding me, speaking words I could not understand. It was an overwhelming and fascinating sensory experience. Later, I was able to understand these words, and was able, in turn, to translate their meaning to others. But this initial impression of countless unfamiliar sights and sounds flowing all around me, will always be with me. The difference between my immersion experience and that of my son is that we needed to build his experience on a structure, incrementally, step by step.

The physical structure of the city was a surprisingly good learning tool for my son. He was obsessed first by circles, then wheels, then cars. I used our everyday driving sessions as learning experiences for him. Driving, we stop and go. We drive up and down. We go around, under, over. We go fast and slow. We go right and left. He knew that I would ask him questions about all of these things. I used his obsession with traffic lights as a teaching tool.

I think back to my younger self, when I used to be overwhelmed by loud noises and had panic attacks when I was in large crowds at church, but then I moved to a large city and the whole machinery of the city, the buzzing, humming movement of the buses, trains, cars, and especially the subway, all of these machines were reassuring to me and carried me on the waves of their energy as I learned a new language and culture.

Here I am, still learning. My son has made what we might be able to call huge breakthroughs. But what I still come to terms with daily is the fact that he still needs to be taught everything, bit by bit. Little by little. One traffic light at a time.

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