Friday, January 9, 2009

Losing it

My baby has autism. This is serious. This is as profound as it can be. Why do people treat this like he has a cold?

We have had absolutely no progress since he has entered Early Intervention in July of last year. That is a whole 6 months with no progress, and no one seems to care but Steve and I. No one seems to think this is significant. We spent a whole lot of money to get an independent evaluation by professionals since the professionals we were working with weren't giving us anything. They recommended a therapy type called ABA. NYS Department of Health recommends ABA in Early Intervention EI program for a minimum of 20 hours a week.

We made the request for ABA at the beginning of December. We were just told today that Onondaga County does not have these services for children Zach's age. So I have read umpteen books about getting into EI and that early treatment may be his only hope. I have read that ABA is the only scientifically proven therapy that works for ASD. I was instructed by the folks at Yale that for ahcild with Zach's profile of ASD that ABA would be the best treatment. And the people who are supposed to be helping us with our child say that it is not available until he is 3. Why doesn't anyone want to help my baby?

They offered us Floortime therapy in its place. The Floortime therapy model is based on the child leading the therapy, where the therapist pursues the childs interests. The problem is that we want Zach to imitate others, and to follow directions - Floortime is not the right therapy for this. Our service coordinator seemed to agree. So what the heck are we to do?

Our health insurance won't cover the therapy. If we lived in Minnesota, Blue Cross Blue Shield would cover it there. We just happen to live in the wrong state. Our insurance is through our company, and is supposefly self-insured. Shouldn't they be able to approve what they want?

This is what is going on if no one can seem to follow my ramblings, an anaolgy:
Scene 1
Month 3 of trying to figure out what is going on.
Mom: My son has cancer.
Service Manager: Oh yes, he likely does. But we can't get him diangosed for another 6 months.
Mom: I will drive out of state to get him diagnosed then and pay with whatever money I have out of his college savings.
Service Manager: Well just make sure I get a copy of the report. And then we can provide him with what he needs.
Scene 2
Month 5 of trying to figure out what is going on. Trip to extreme Ivy League medical school to get official diagnosis by the doctor who is currently writing the medical encyclopedia on cancer.

Dr at extreme Ive League school after tests are run: Yup, he's got cancer. Good luck.
Scene 3
Back home to Nowheresville where no one cares. Month 6 of trying to figure out what to do.
Mom: We got his official diagnosis. They say he needs chemo.
Service Manager: Oh, sorry. We only can offer you penicillin.
Mom: But he needs chemo!
Service Manager: If you wait another 6 months, you may be able to get into a place that can get you chemo. The only thing is they have a 200 person waiting list and you can't get on the list until he is a little older.
Mom: They say he needs help NOW! We have been trying to get help for 6 months. Time is of the essence the doctors told us. Can you do anything to get us on this list?
Service Manager: No. But good luck.

OK - so it's not cancer - but it is that serious. Can Zach die from autism? Jett Travolta reportedly died of a co-morbid condition commonly found with kids on the spectrum - seizure activity. Does Zach have seizures? We are scheduled with a neurologist to begin this inquiry. He has a sort stim, where he holds out his arm and tenses them while he spreads his fingers. Is this a seizure? Possibly. This is serious stuff folks. He needs help now, and all we keep on getting is the run around. I am really beginning to lose faith in people.

Zach will be going to the developmental pediatrician Monday, most likely so that we can be told by someone that he has autism. What a revelation that will be. (sarcasm should be noted) We cancelled his hearing test called an auditory brain response (ABR) because I didn't feel comfortable having my son at age 2 who may have a neurological disorder go under anesthesia. Lots of risk with no obvious reward. His hearing can be tested later.

Steve put a call in to a professor at SU today. She has been somewhat helpful and indicated that the information that was given to us by the county regarding ABA therapy not being available was not true. So now we are being lied to by the people who are the experts and are supposed to be helping us. How much more of this crap can we take? When is it time to call a lawyer?

My son's life is being treated like an inconvenience because some government employee took time off to be with her lovely family instead of doing her job adequately. Are these people overworked? You bet. But here is a chance to help someone - do something real. I will follow through with this kid. This will make a difference. But 6 months has gone by, my insurance has been tapped by people providing services, and there has been no improvement. Is this acceptable to people? Don't charge my insurance company and give me services that do no good if I am just added to the pile of unwanted paperwork on your desk. Set us free to figure things out on our own, rather than be part of this masquerade of help you supposedly are giving.

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