Sorry.... Have to Come Out of The Closet!!!

4/04/2011 Charlene Long 0 Comments

I hope you all still come to my blog and I must apologize for my absence, but I am not too good at writing when everything seems to whiz past me at lightening speed. Much of my readers probably understand way more than I think you do as we are parents with special needs kiddos. I guess it is time for me to come out of the closet.

Yes, I was a closet Asperger's parent. Buddy was recently diagnosed Tourette's Syndrome and Asperger's Syndrome. This was really hard for me and I am not sure why but it was. Never the less.... I think I am ready to move forward. Buddy had a lot of early intervention until he turned three. At that point he didn't qualify for services. As I have mentioned in past posts he has been having difficulties in school which has led us to having him evaluated. We have been traveling from one doctor to another to try to find answers.

He recently had a Video EEG to ensure there was no seizure activity and it was normal. This was both a relief and frustrating. I think it was frustrating because then it becomes clear that this is a debilitating disability that he needs to adjust and learn to live with. There are no answers as to why he has it or how it occurred but he has Tourettes Syndrome and it suddenly smacked me in the face. I have been in crisis mode since January.  What started as school problems has evolved into much bigger issues with future IEP needs and the road of diagnosis.

Amazingly, I am standing strong and supporting my two boys who are on the spectrum whole heartedly. Fighting for them to receive the services they rightfully deserve and need. With my youngest this was not as hard, it was clearer and easier to accept.  It wasn't as hard to get services from the schools. On the other hand, getting Buddy diagnosed was much easier. Maybe it is because I know how to approach the doctors now. Whatever the case is, I am doing it. I am making sure that Buddy gets what he needs and I am ensuring that the proper treatments are used.

The neurologist, that I just fired, placed Buddy on Intuniv. The Intuniv made him hallucinate and he was paranoid. I informed the doctor that this was happening and she lowered his dose and decided to put him on yet another medication on top of the Intuniv. They wanted to put him on Focalin but I refused. Focalin is not supposed to be prescribed to anyone with Tourettes.  I have to advocate for him.

So, Buddy is no longer on any medication. We are starting an all natural supplement regimen. He also receives  Melatonin at night. The Melatonin has helped him sleep at night which also improves his tics. I hope this enlightens you to why I have been missing in action and hopefully I will be able to climb on board the blogging train again really soon.