Tuesday, April 03, 2007

Why is this such a hassle???

Why does getting help for my son have to be such a hassle??! I called our new case manager just now to ask if there is any program we can get Nicholas into while we are on a never-ending waiting list for UW. She asked me what level his self-help skills are at. I will tell you where they are at....NOWHERE!! His language is at best at a 12 month level. I just cannot fathom waiting anymore. I have been patient,and accomodating-it is not getting us anywhere fast. I must hound and hound if I want anything for him. She told me "Well,there is not many things out there for him" WHAT???!!! That cannot be!! If I must, I will call these people in charge of programs directly. He is covered through the state disabilities program, he is covered through the military-he is on at least 3 different programs for disabilities.
I got her to agree to a meeting at home with us next week. That is a start at least.

Sunday, April 01, 2007

A little upset and disappointed

I was watching the Larry King show last week and they had a show on autism. I thought it might be good to watch,so me and Mike watched it together. I came away feeling upset and kind of angry. They had celebrities on there whose kids were diagnosed with autism, and they were talking about how much therapy they were doing. I heard someone say something like their kid was getting 80 hours per week. THEY are getting 80 hours per week and here WE are, barely getting 10 hours through pre-school. I am getting frustrated with being on waiting lists. As we wait, time is ticking by. Precious time. The next day, I made some phone calls. I called Nick's Dr,our case manager,and UW. I also wrote an e-mail to our local Autism Society chapter. That was last Monday. The ONLY person I heard back from (two days later) was Nick's Dr. I asked him if he had recieved the referral from Nick's last appt with the nutritionist. No. You can bet I will be calling everyone again and again until I get an answer. It is frustrating. It is sad. I came away from the show thinking "What makes their kid MORE special than mine??" We are the lucky ones. Our therapies are covered through the military. MOST insurance companies do NOT cover ABA therapy, or things like RDI therapy, some wont even cover Speech or they treat kids with autism as being "speech delayed" only. Most parents go into dept just trying to help their kid. It is outrageous! A "regular" person cannot afford 80 hours of therapy-yet don't our kids deserve it as well?? 1 in 166 kids is diagnosed with ASD. Insurance companies need to get on the ball and cover programs for our kids! April is Autism Awareness month-so please get informed about this! We have had to learn everything for ourselves, and we are still trying to navigate through all this.

One more thing I need to do is get Nick tested for Fragile X. 2-6% of kids with autism also have Fragile X. I have gone back and forth with getting him tested-will it make a difference in his therapies? Probably not. But I need to know. Just to put my mind at peace. I am almost 100% sure he does not have it, but you just never know. I want to get the test so that I can say for sure. Wish us Luck!

If you go to http://www.autism-help.org and click on "Personal Stories" you will see parts of our blog!