Autism As A Whole

It's been a while, I know but so much is going on and it never seems to give me a break. To make matters worse I have some serious writers block and that makes writing VERY difficult. Lately doing anything outside of typical routine is torture. I am not sleeping well, have zero appetite and am at a complete loss of words. What started as "Autism" has hurdled into huge medical problems and some of which they can not fix. I just want my baby to be ok. I want the damn doctors to get their heads out of their asses and figure out how to help him. I can't stand seeing him deteriorate in front of me. His color is changing and most days he is quite pale. In the picture below he was sleeping under his blankets(face and all) so his cheeks are flushed but the color around his eyes is what his complexion has been. Isn't that a little scary? Doc says his neurological functions are not good but can't determine what is causing it and wants the muscle biopsy done asap. I AM SCARED!!!!

Since it is Throat Punch Thursday and I have many people I would love to have my way with, I think I will continue with my medical mystery!! When you first start visiting doctors you are determined to fix things and excited to see a new doctor to get a different perspective. The determination doesn't go away but as you keep being derailed and detoured you end up losing faith in them. Them meaning the doctor's of course. Do you ever wonder where these doctors get their medical degrees from? Some of the things these specialists have said to me were ignorant and caused me to question their judgement. 

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.

My son is four years old and he has been receiving Early Intervention since he was 18 months old. I think in the beginning I went through many phases. These included denial, anger, sadness and many more. At this point I struggle to try to look for the positive in my situation. J asked me how I can think about Autism the way I do and I was a little stumped by the question. I really am trying to be honest here. I wanted to tell her what I knew she needed to hear. It was hard though because even though I can speak the talk, I cannot always walk the walk.

It seems that I have been in a very positive mode lately with my writing. Trust me that is not always so. I do not want you to feel at all as if you are the only frazzled and overwhelmed mom. Actually when i started this blog it was my hope to share with you the ups and downs. I don't want to sugar coat things and I don't want it to just be about my son. This blog was meant to be about all of my family. My son's difficulties cause difficulties with the whole dynamic of a household. I cannot seem to spend the same amount of time with my other children because he is so demanding. 

How did you cope when you first got your diagnosis? Were you sad? Angry? If any of you were like me you felt all of your emotions and they were off the rictor scale. I would be calm one minute and crying the next. Does it get easier to manage? I guess this depends on when you speak to me. If things are good at the moment, I seem in control, but it isn't always like that and being I cannot sit at my computer and blog while he is in midst of a meltdown I guess I do not always accurately describe the anguish I go through every day.

I hope that you as a parent will read my blog and take something out of it. I am angry. I do ask, "Why my son?". But in reality, if that is all I can focus on what am I accomplishing? Have faith in your child. Push them to take that extra step. Try not to lose sight of what they are capable of (sometimes they can amaze you) instead of focusing on what they can not. This isn't easy, AT ALL, but it does help you to cope and keep on going. Take your anger and put it towards something positive. Anger can be good, it motivates you, not to cure your child, but use it to advocate for him. Learn acceptance... that is the best gift Autism can give you. It is a struggle everyday to see things through my son's eyes, but it is wonderful when I can understand how he is feeling. Again, while it isn't easy, it is amazing and you can do it. 

Let's reach out to the new parents going through what we have once gone through ourselves. I welcome Jennifer into a part of my life, a neighbor on my sometimes lonely planet and as a mom who can understand. Hang in there. It is a long road and a process that seemingly never ends, but as you move beyond the grief you can see the rainbow. Posting the blog post about your son was one more step towards acceptance. I am here to chat anytime and I am sending hugs to you and your family. I would also suggest that you find a local Autism Spectrum Support Group. This is a very helpful support to have.