Ego, M.D.

Last night my friend Lisa and I went to what we hoped would be a positive panel discussion on autism. It was titled: "Marvelous Children: What We Know about Autism and What We Wish We Knew." My afternoon had been pretty rotten. When Liam's van driver dropped him off, she approached me with a confrontational stance. He had allegedly removed his shoes (still not sure why this is considered a crime) and his seatbelt. He repeatedly opened the window and hit the driver on the head while she was driving. I told him that even though he had "super day" on his behavior report, he would not earn Max and Ruby due to his tragic choices in the van.

At gymnastics, he removed his pants (because the shoes were already off?) and stood there laughing with his little penis flappin' in the breeze and his ass hanging out. He refused to do the routines by throwing himself on the floor and (still cackling) going limp like a 60s protester. The aide stood by helpless. I had to step in and literally drag him through the routines. My arms are still sore.

So I entered into this discussion panel truly hoping for the good news. Most of the seven panel members were MDs (one TRIPLE BOARD CERTIFIED!!) and very well-known statewide, if not nationally, for their work in autism research and treatment. I did not learn a lot of new information, except that your number of board certifications apparently directly correlates to how much time you are entitled to on the microphone. No one really spoke of any new treatments, with the exception of Stephen Edelson of the Autism Research Institute. The others treated his opinions with open disdain. Wouldn't it be funny if he was the one laughing in ten years?

Dr. Josh Feder provided the only mention of DIR, a therapy which focuses on engaging the child socially in order to facilliate communication and emotional/cognitive development.

The pediatrician on the panel, Dr. Stein, actually quoted the now-disproven statistic that "three-quarters of people with autism are also mentally retarded". We know now that when you test a non-verbal person with a verbal test, it may appear that they don't know the answers.

The discussion wound up with truly depressing predictions about this "autistic baby boom" growing up to find themselves incarcerated or institutionalized if things don't change. Not quite the good news I craved.

Lisa and I foraged out into the cold night air looking for food and drink, while trying to process what we'd seen and heard. The only restaurant nearby that was open, Bombay, had very good Indian food, nice ambience, cold chardonnay and Midnight Pomegranate-scented hand soap in the restroom. That was the best news I had gotten in a long time.

The Birthday Party

Friday started out with Rob noticing that Liam had little red blisters on his legs and feet. "It's infected, " I declared as soon as I saw it, "I'll have to get him antibiotics." Liam has severe, chronic eczema and a couple of times a year, it gets infected with staph bacteria--something we all have on our bodies, but when introduced to open, immuno-compromised skin, can cause a nasty infection. Getting him to the doctor was the easy part. Explaining to him that he couldn't attend the birthday party at Pump it Up later that day was not so easy. I remembered there was an Ulta beauty supply near Pump it Up, so I told Liam that during the play portion of the party, I would take him there to pick out nail polish for me. Then we'd head back to Pump it Up for the pizza and cake. He was not happy about leaving his sister at the party. "I'm so sad," he cried, "I will miss her."
All sadness was forgotten at the beauty supply. I led him straight to the OPI section with strict instructions to "keep hands down". OPI has the best colors and the most clever names. Liam was in heaven. "Look at this one. . .this is bright pink. . .what is this one called?" He probably could have stayed there all day, but we picked a couple of colors and made our way to the car. We were driving quietly for a few moments when he said, "I just love those bottles of nail polish."
In the pizza and cake room at Pump it Up, he stood out even among the group of younger kids. He wandered aimlessly, stimming on the window shades. Again and again, he spread his arms wide and ran his hands across the stiff fabric. Sometimes I forget how different he is and then am sharply reminded by a look or a comment. I noticed one mother staring at him, not unkindly. I could see the wheels turning in her head: what's wrong with him? Could he be one of those autistic kids I've seen on CNN?
Another mother approached me and asked, "Where does your son go to school?" It turned out she was also "in the life" and wanted advice on how to handle her son's transition into the school district. I gave her my phone number before we left.
After the goody bags were dispersed we headed for the car, Liam and Zoe floating on a sugar buzz and me dreaming of a bloody mary. Time has taken some of the sting out of Liam being so set apart at birthday parties, amusement parks, school and just about every other public place. Time has also enabled me to, at the end of the day, feel truly lucky that I have a child who finds beauty and comfort in row upon row of glimmering, over-priced nail polish.