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!

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M said...


I'm from Spain and my english is so poor, I only wanted to say that you have a very very lovely boy, I've been watching all the pics. I wish a lot of smilies like the ones on this photos. A lot of more funny moments..
Don't stop fighting, you're a so brave mum.

A real big big kiss to Nicholas and to Michael too.

Jessica said...

Hey Amy,

We just saw the Pedi last week and will also have Wes tested for Fragile X. I'm not sure one way or the other if he has it or not. Sounds like we're in the same boat again. Hang in there, brighter days are ahead.