A few days after Alexander's appointment at Marcus Autism Center I found and joined a website called MyAutismTeam.com. Everything is still pretty new but I'm really glad I found that site. Alexander is an anomaly in many ways but it's so nice to connect with other parents who can mostly relate to my current circumstances, whether emotionally or in the technical aspects. Right now I'm more focused on the practical parts. Because in fact, I find that my biggest anxiety-causer isn't Alexander at all; it's the red-tape. We want to get our little man all the help and services we can, and that requires paperwork.
And it requires cold-calls, and doctors' consultations, and IEP meetings, and waiting on hold with the insurance company (again). And being rerouted to yet another person at the insurance company who has no idea what I'm talking about or "no authority to make that call," (again). It means waiting in line at DFCS and "willingly" handing the state information that I, frankly, wish they didn't have. It requires, over time, filling out 57 different forms for 11 different offices, some private and some tax-funded, all with that same information! (Those numbers are guesses but I promise I'm not trying to exaggerate.)
Bureaucracy is the bane of my existence and has been most of my adult life. I'm sure I'm not alone in that. Alexander's pediatrician at least seemed to agree with me. I commented to him the other day that I'm working toward a gold medal in "Hoop Jumping" for the 2012 Olympics. He paused briefly in his scribbling under yet another "To Be Filled Out Only By Child's Primary Care Physician" heading. He glanced at the mountain of case files on his desk. (Alexander is his 4th patient to be diagnosed with Autism this month.) Then he gave an exhausted attempt at a chuckle and said, "That's actually a good joke."
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