Wednesday, January 15, 2014

The Beast

Ham had his first meeting with the evaluating psychologist. It went okay. It wasn't particularly informational or extraordinary. The doctor echoed most of the things I already thought/knew. She wasn't the nicest lady I've ever met or very good with difficult children but she was thorough. Ham has to return next week for a lengthy evaluation and several tests. I am not looking forward to a string of hours in a very quiet waiting room without wi-fi.

I've been working like a tornado trying to determine what we will be capable of providing for Ham when this whole evaluation period is over and we get a diagnosis. I've sat on hold with extremely unsympathetic insurance agents in a crowded restaurant, I've called every in network therapist, I've contacted the local school system, and I've reached out to as many spectrum moms as I can find. All this time and effort and I've got little to show for it. Everything seems just out of reach for me.

In a perfect world there would be one magic place where Autistic kids could go and get the things they need. It would be filled with gentle and patient therapists, caseworkers, and helpers. There would be OT, ST, PT, ABA, and every other acronym useful to Autistic kids. Parents would be involved and welcome to observe while children would be encouraged to grow in a safe environment. Sadly this magical place exists only in my dreams, perhaps they have one somewhere else in the world but sadly not here.

I am forced to attempt to piece together a program for my son with little knowledge of what he actually needs with little real guidance. I feel lost and overwhelmed. My husband doesn't want to talk about Autism anymore. I am alone against the beast that is Autism and the American healthcare system. God help me.

1 comment:

  1. I just found your blog through The Nearsighted Owl. I don't know if this is helpful but there is a lady named Ali Edwards who does scrapbooking and her son is Autistic. She has written a lot about the process of diagnosis and what works for them. Here is a link to her blog I don't know if the info is there or if she has another place for it, but maybe she will help.