Autism is Frustrating!

Last night I was watching a television show while playing Uno with P & J. The show highlighted a family who had three young boys with Autism (they were approximately 4 and twin 2 year olds). It showed in detail what their day was like and all of the therapies the boys attend. They are involved in a very intensive therapy called Applied Behavior Analysis or ABA for short. P was watching pretty intently, towards the end it showed one of the boys actually conversing with his parents. He pointed to his bed and spelled b-e-d. P turned around and said, "Mom that is so neat! We HAVE to get E into that therapy!" My eyes started welling up with tears... first because I was so proud of P for wanting to take care of his brother and second because I didn't know what to say next. How do I tell a 9 year old who desperately wants his brother to talk that it will probably never happen. As a lot of people know E not only has Autism, but pretty severe brain damage. The ABA therapy is great, but it's not a guarantee and it's EXTREMELY expensive! Insurance doesn't cover it...the family on tv shelled out over $150,000 PER YEAR for their sons ABA. There were times that they had 12 tutors in the house at one time! While I know that ABA therapy would probably not work for E, I'm saddened to know that I don't even have the opportunity to try because of finances. I think that 90% of the population would not be able to try because of finances.

I've done everything that I feel I can. He is on waiting lists with the state. One list he's approximately 8,300, the other list he's over 18,000 and they only release a couple hundred a year! I'm trying to get him services through Tarrant Co MHMR. I've given them doctor's letters stating that E is severly Autistic and has brain damage and mental retardation, but that's not sufficient...they need an IQ test. His school has attempted on 4 different occassions to administer an IQ test on E. HE WON'T DO IT. So now I'm stuck in this big loop. I mean this is MHMR (Mental Health and Mental Retardation) surely they have some way to get people into the program that are SO severe that they can't even take an IQ test!

I'm so thrilled that Autism is being brought to the forefront now...it's not hidden away as this secret disease. But what is still extremely frustrating is that they seem to portray the less severe sitations. I've watched many shows on Autism and E is more severe than 90% of them. There are also lots of shows that tend to make people beleive there is a CURE for autism...there's not!

I know that God is bigger than all of this...I know that God could fix E if he wanted to ....I know that God takes care of us. But I'm human and sometimes I have my days where I just want help! I'm fortunate that both of my parents help me so much! But there are still a lot of situations that are lacking. Right now we don't even have a babysitter to watch E in the afternoon. I only need somebody from 3:30 to 5:00 but we haven't been able to find anybody. It's not like I can't afford to pay somebody, it's just we haven't found anybody that wants to help. So right now, my mom comes over 4 days a week after work until I can get home. My dad takes of work early one day a week. I take of early as much as I can, but I've used up almost all of my sick and vacation time on doctor's appointments. It's the little things that get the most tiring. This too shall pass and God is bigger than all of this. But I'm pretty tired, and I know my parents are too.