So here we are once again... April is Autism Awareness Month! I mean, come on......like you hear from all of us Supermoms ALL the time, Autism Awareness is everyday of our lives. It's nice though that we can have a special month to really be obnoxious. I say that light heartedly. I sometimes think I get on people's nerves because I talk about it so much. It's just that this is mine and Ryan's lives...... We live it everyday! We talk about it openly, but no one is listening for the most part. I made a phone call a couple of weeks ago. I was inquiring about getting additional help for Ryan since I have yet to find a therapist who treats Asperger's Syndrome that accepts his insurance. The lady I spoke with said, oh Asperger's doesn't fall under autism. Asperger's is considered to be the highest of functioning autism, and they do not qualify. What? Really? Ryan has the worse form of Asperger's. A Judge and Doctor, who both talked and observed Ryan (the doctor testing him), have written in reports that Ryan will never be able to live independently. Okay......I will continue to fight. I can deny that this is true, and then I am not accepting my child. I'm in a catch "22" here. I tried to throw Ryan out there into the real world. It didn't work. So I accept this, and now I am trying to get him help.
As I mentioned before, Ryan also is bi-polar, anxiety/panic disorders, ocd, and many phobias....... He also has physical ailments. He has had chronic kidney stones since he was 12-years old, and has ulcerative colitis. When Ryan was 19 he was diagnosed with the ulcerative colitis. After every possible treatment failed, Ryan had surgery to remove his large intestine. Because the rectal area was not diseased at the time Ryan chose to keep that, thus not having to have a colostomy bag. We were told by the team of surgeons that there was a VERY small percentage that the ulcerative colitis would return in the rectal area. Well wouldn't you know.......it returned. Ryan continues to take medication with the possibility of someday have to have that area removed as well. With regard to the chronic kidney stones, Ryan has been to many specialists who has established that we have done just about all we can to to prevent them. He will continue to have them. The physical end of things meshed with the Asperger's usually triggers the anxiety and panic attacks. So we really do deal with a barage of things.
Ryan's insurance will cover therapy for his depression and bi-polar disorder, but will not cover
therapy for the Asperger's. Ryan's former therapist refused further treatment last year because she said that she could not help Ryan anymore. She said he was not trained to treat autism or any of the ASD's. What she knew came from having a best friend who had children with autism, and her own personal research. Her bosses would not pay for the therapists to take classes for autism. So, here we are without proper treatment. I find it has to be worse too, because Ryan is an adult. I decided to research homes for adults with autism. I was so shocked to learn that the decent facilities costed in the area of $15k - $25k per month. That is unrealistic. That is saying, because I am basically "poor" my child cannot get the type of treatment that the elite country clubbers' children get. I had the opportunity to speak to a mother of an adult son on the spectrum. She said that she HAD to put her child into a home, just one of these homes that houses all types of special needs, not specifically autism. Her son was violent. He attacked her and other family members. The first home he was in, he became to violent and they were not equipped to deal with him. He was kicked out. This mother found another home and says her son is doing very well. Well, here we go again. Ryan is not violent. He is not a behavioral problem. He was never one of those kind of kids. He has ups and downs, but nothing more than those expected for everything he has. Like that teacher who didn't go to jail because she was so pretty, and as her attorney put it, would not survive in prison. Well, Ryan would never survive in a home like these this mother put her son in. And, as long as there is a breath in me, my child will be with me. I worry about what will happen if I'm not around, but I will save that for another time.
I will close with this.......Support Autism....support all the Autism Spectrum Disorders. Show your acceptance. Show your support. We parents and our special children need that.
Peace!
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