I just realized that I mentioned the surgery... but never fully explained. As many of you know, Sammy has horrific headaches. In the past few months, they have gotten tremendously worse which has created SIB's for him. SIB stands for Self-injurious behaviors. When Sammy gets these headaches, he bites his hands and arms so hard that he had open wounds and terrible scarring. He is often on antibiotics for these to prevent infection..
Anyways, after many appointments, MRI's, etc... it was discovered that Sammy has a Chiari Malformation. I don't want to explain it incorrectly, so if you wish to know more, please visit this site: http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm
Basically, the surgery will relieve the pressure and the headaches will no longer create such horrific pain for Sammy. I feel so bad for him that he has been in this amount of pain. I've read tweets, comments, etc. from people who have experienced this and I cannot believe how much pain these people have been in. Let alone Sammy -- who can't even express his pain in the proper way. Its terrible that he already goes through so many struggles, that he has to endure this much pain in addition.
Anyways, we decided on this surgery because it is obviously very painful for Sammy. But also, he might hurt himself with the SIB's or someone else. During the headache "episodes," he not only attacks his hands, but he seems to take down anyone in his path. Not because he is aggressive, but because he is a teenage boy with ox-like strength and is in THAT much pain. Therefore, we scheduled the surgery for October 9th. Please keep Sammy in your prayers.
Other than the fact that he is going to have brain surgery, we worry about him because we cannot explain to Sammy that he will be undergoing serious surgery and will be in a great deal of pain afterwards. We can't explain to him that it for the good in the long run and that he will need to leave the stitches along and rest. Recovery is 4-6 weeks long and I will be home as much as I can to help my mom with the recovery progress (especially since you know... his father can't be bothered). My mom will be taking off that time from work and will be solely working from home.
Brain surgery is scary for anyone, but I am so worried for my brother and I cannot believe the time off my mom and I have to take... or the extremes we have to go to for him in order to accommodate the Autism. Because Autism or brain surgery isn't enough of a stressor -- let's combine them?
*September is Chiari Malformation Awareness Month!
Autism from a sibling's point of view...
My name is Paige and I am 26 years old. I graduated from Towson University with a Psychology Bachelors Degree and from Johns Hopkins with a Post-Bacc Certificate in Education of Autism and other Pervasive Disorders at . I recently left my job at Kennedy Krieger Institute and began my Master's Degree in Applied Behavior Analysis at University of South Florida. My younger brother, Sammy, is 20 and has Autism. He is non-vocal, unaware of safety, is not toilet trained, cannot get himself dressed, and has difficulty with everyday activities that we all take advantage of. He works harder every single day of his life than anyone I know and he always does it with a smile on his face. He is my true hero and inspiration and because of him, I have dedicated my life to advocating and creating opportunities for individuals with Autism. I hope that I can make him proud and this blog is just a small part of the awareness I hope I can create about Autism and support other siblings impacted by Autism. I love you Sammy - thank you for everything.