Work and Autism

I arrived at the library, fully prepared to don the stoic facial expression by which I had come to be known. "Tara," I said to my boss, "my son is severely underweight, and he has to become an 'inpatient' at a feeding clinic." Her eyes filled with tears. That was all it took to crack the facade. I began sobbing, and apologizing for the emotional display. Despite my apologies, I could neither stop crying nor talking.

I didn't know how I would make it through two months watching my son scream while having his teeth pried open with a spoon. My voice quivering, I told Tara about  the center's primary psychotherapist showing me graphs and charts to qualify the necessity of his admission. They didn't view Caleb as human, let alone a child. I had only two choices: Intensive feeding or feeding tube.The last outpatient feeding session that I had been to was so violent that I was seriously considering the surgical option. My life sufficiently saddened my boss. (Her exact words were "Your life makes me sad.)She would allow me to work nights.

I managed to keep it together for my other supervisor. It was much easier to do given the fact that she was totally unsympathetic. I once called her to advise that I'd been in a car accident, and suffered a concussion. She didn't want to hear anything more about my "drama" for fear that it would become her own. So, I kept it short. I had an obligation that involved my son; I couldn't work the hours that we suggested. She could be flexible until June. By June I had to convert T.S. Eliot's entire dissertation  to xml.

I could create my own schedule with my third job.

With my jobs secured, I could now focus on being present at Caleb's 5 day per week, 7 hour per day feeding sessions. His schedule is as follows:

845-9:30 Breakfast
9:30-10:15 Break
10:15-10:45 Snack
10:45-11:30Break
11:30-12:15 Lunch
12:15-2:30 Nap
2:30-3:15 Dinner

To be fair, the Marcus Institute does what it can to make this experience less dismal, but there is something fundamentally dismal about asking some third party for help feeding your child. Caleb's nap room had a picture of the Teenage Mutant Ninja Turtles with his name on it. Obviously their research stopped at feeding. The Ninja Turtles had not been on television for more than 10 years. Inside there was a small cot and nothing else.

Caleb's therapy room is even more depressing. One high chair, a table, a bucket with the toys we had brought for him, four small plastic cups filled with pureed meats, vegetables, and fruits, and a fluorescent light to make it all look dirty.