But I figured maybe I'd share a little of Jay's world with you after reading Jenny McCarthy's new book, "Louder then Words".
I just finished the book last night. It will be great for my in-laws to read to see that what we have been going through physically isn't so bad as compared to what Jenny's little boy went through. While I didn't get a ton from it, I am glad that other people are reading it and seeing what it's like to be the parent of a child with autism.
So, what's Jay's life like? We are blessed to live in Pennsylvania. My son gets 10.5 hours of preschool in an autism only classroom with a 1:1 student/teacher ratio. He gets 30 hours a week of TSS - Therapeutic Support Specialist -- someone who is with him at school and at home or in the community, helping to implement his treatment plan and helping him to learn to interact with the world. At school he gets OT, PT & Speech once a week. He gets 3 hours a week with a BSC - Behavioral Services Consultant -- his TSS's supervisor who works on developing his treatment plan & facilitating his progress. He also goes to an after-school program 2 days a week from 3-6pm that is autism only and has a 2:1 student/teacher ratio. He is transported to and from school on the bus. He has a Service Coordinator -- a county employee of MH-MR who oversees all his programs and gets me any info I need on services, grants, etc. He has a BCBA -- Board Certified Behavior Analyst who is the eyes who oversees the entire process and makes sure we are moving along the right path. He also is going to be going to a feeding clinic at Penn State Children's Hospital/Hershey Medical Center to help him learn to eat more foods so we can switch to a GF/CF diet (maybe) someday. And he goes to Johns Hopkins to see a pediatric orthopaedic surgeon who is treating him for his toewalking (we are getting ready to do casting/bracing). And ALL of this is paid for by the state. The only exception is Johns Hopkins, which our private insurance (Capital Blue Cross) pays for because it is out-of-state.Yes, we are the exception with the amount of services we utilize, but my son has a very high level of impairment & if these services are available to me, you better believe we are going to take advantage of them. But even with ALLLLLL that work & all those services, we are still basically non-verbal, non-communicative, non-potty trained, eating 5 foods, biting everything (and everyone) in sight and still lost in the world of autism. Sometimes no matter how much work you put into it, at the end of the day you are still not any further ahead then when you started.
I am slowly accepting the fact that Jay will heal at his own pace, but yeah, I occasionally want to puke when someone tells me what great success they are having. I'm happy for them, but sad for me.
He is also frustrating, draining, literally exhausting, he causes me to cry every single day, has given me gray hair, makes me get headaches from reading for hours on end learning everything I can about his disease, he makes me lose my voice for yelling at him to GET DOWN from every high spot in the house, he makes me wonder if I did the right thing all those years ago when the little line turned blue.
But here we are and there is no where to go but forward. So that's what we do. Every day, one day at a time, one little step forward.
I'm going to stop now & go cuddle my angel. :-)
