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!
Last night, we had Sammy's birthday party and I can't even begin to express my appreciation for everyone who attended, supported, and helped. With the help of Ivan, we were able to get Sammy a DJ for his party. While he enjoyed his favorite tunes, he was given the freedom to eat as many chips as he wanted. The freak of nature ate tons of full bags, stuffed his face onions and tomatoes, and downed about a gallon of coke and apple cider. Heaven for Sammy.
It is obvious that the people who took the time out of their Saturday to make the trip to my brother's birthday are some of the most meaningful individuals in his life. We could not do it without any of them. I know that my heart breaks when I think of the thought that Sammy did not have opportunity to invite any friends to his party, but I know he and I are so fortunate to have all of those that were invited in his life. I cannot even put my thankfulness into words to show how much I appreciate each and every one of you and how much I love each of you.
In addition to celebrating Sammy's birthday, we were also celebrating the completion of Sammy's fence (as I described in a previous blog post). Because of Bill, the Boiling Springs VFW organized and helped complete the entire project and we are so thankful for that as well. Although our party was rained out, Sammy spent his entire Sunday recuperating from his "chip hang over" by walking around his newly fenced yard. Needless to say, he is a happy birthday boy.
I know I've said it a million times, but I just don't know how to say it just right to make sure my appreciation comes across the way I want to. Thank you to everyone who has been there for my brother. Without your support, I don't know what we would do. You are all amazing.
Three years ago, when I left for college, my biggest fear was that Sammy wouldn't understand and would think I was abandoning him. I also was afraid of losing touch with my family, especially him since he and I don't have the ability to text like Jack and I do or to talk on the phone my mom and me. This is another thing that breaks my heart, that Sammy is missing out on -- texting, using the phone, visiting me in my apartment, etc.
I have noticed throughout the past few years, especially since I moved to Maryland, that I don't talk to my family as much as I did during my first two years of school. I also feel like I am unable to come home as much and I miss out on little things that I wouldn't miss if I was still living at home. I know this is part of growing up and I've learned to kind of deal with it.
However, my last trip home, my mom sat Jack and me down to talk about Sammy's latest appointments. I had known he had been going to appointments for his bad headaches, but I had no idea they were attending as many as they were. This is what I was afraid of. Those of you who know, I don't just talk to my mom once a day, everyday, but its usually multiple times a day -- in a row. I had no idea what was going on with Sammy and this freaks me out, I talk to my mom so much, why wasn't I picking up on it? If I had been home, I would've noticed that her and Sammy had way more appointments than usual. I would have witnessed and experienced how much his headaches had increased. I would know that it wasn't just a once and awhile occurrence anymore, it was reeking havoc on SAmmy's life, my mom's life, my brother's, his school life, his sleeping, etc.
My biggest fear has come true. I have always made it my main focus to be a part of Sammy's life and what is going on in it. I try to attend as many meetings, therapies, appointments, IEPS as I can. I was to be as informed as my mom and I want to be there for him. Even though I physically couldn't be there for all of these appointments that he'd recently had, I felt like I had failed him because I wasn't catching on to how many appointments he had and how serious the headaches were becoming.
So, my mom informed my brother and me that Sammy would be having brain surgery to relieve him of his headaches. But, that's a story for another day.
Autism from a sibling's point of view...
My name is Paige and I am 24 years old. I graduated from Towson University with a Psychology Bachelors Degree. I am now working towards my Master's in Education of Autism and other Pervasive Disorders at Johns Hopkins. I am also a Behavior Data Specialist at the Kennedy Krieger Institute Neurobehavioral Inpatient Unit. My younger brother, Sammy, is 19 and has Autism. He is completely non-verbal, 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.