On Tuesday night I wrote a tough blog about my son and the struggles we've had. I wanted to follow up with positive news and an action plan. This won't really have anything to do with running or weight loss but I wanted to update with good news!
We met with Jack's psycharist last night and it was a very productive visit!
I feel as if 1000 pounds have been lifted off of me. We got there last night at 5:15 and talked until 6:30. His doctor is AMAZING!!!
He pretty much summed Jack up in one word = Perseveration "is the repetition of a particular response, such as a word, phrase, or gesture, despite the absence or cessation of a stimulus, usually caused by brain injury or other organic disorder. If an issue has been fully explored and discussed to a point of resolution, it is not uncommon for something to trigger the reinvestigation of the matter. This can happen at any time during a conversation. This is particularly true with those who have had Traumatic brain injury. Several researchers have tried to connect perseveration with a lack of inhibition; however, this connection could not be found, or was small.
Perseveration may also refer to the obsessive and highly selective interests of individuals on the Autism spectrum."
Jack is not like us..."normal" rules do not apply to him and other children with Autism. Everything with him is black or white there is no room for Grey. For example the grocery shopping carts with the cars Jack loves those and he knows they do not go out in the parking lot. That's the rule...We were at Home Depot once and using one of their shopping carts with the Nascar. We had a heavy load and we took it out into the parking lot. He FREAKED OUT. It was unlike any episode I'd seen at the time. So his reaction was to strike against those that broke the rules. Where for us physical violence is not acceptable and it's no big deal that we took the shopping cart with the car out into the parking lot we'll just put it back inside rather than leave it in a corral in the parking lot.
So the action plan... His doctor really feels he needs to be on the waiver for children on the spectrum for state funded services. The services in the state of IA is based on the recipients level of income and assets. Since Jack is 6 he has no income or assets so he'll be covered 100%. What this means he will go on medicade, all of his therapy visits, co-pays, medications will be 100% covered. The waiting list is 2 years long. The way to get around the waiting list is to have an IQ test done and if he doesn't meet a certain IQ level then he'll qualify immediately and we bypass the waiting list. Jack is also on a medication called Namenda. Namenda is marketed for Alzheimer patients and it's in a study to help children with ASD issues. What Namenda does is it takes the brain from firing all different directions all the time to working as one unit all the time. Jack was taking 10 mg 2 times a day and he increased his dosage to 15 mg 2 times a day. This doctor has 99% success rate with this drug in ASD patients. There was a news story on it earlier this year.
The Story from 13/WHO: