I'm sure many of you have watched "World of Jenks," but basically, a young man, Andrew, spends a year living on and off with three individuals. The one individual that I am particularly interested in watching is Chad. Chad is a young adult with Autism. Chad is graduating from school and struggling with Autism. Although Autism is such a large spectrum and each individual is completely different from the next, watching Chad have a girlfriend, went to prom, etc. -- it really gets me thinking about my little brother.
On the newest episode, my mom and I were so happy for Chad having the opportunity to go to prom, have someone love him, and get his first kiss. But at the same time, our hearts ached for Sammy. First of all, I don't even know if Sammy thinks, "this isn't fair, all of the other kids are driving, going to prom, etc." I don't know if that hurts more or if there is a possibility that he will never get to experience that kind of stuff. I know it sounds so pessimistic to say that he won't because I really hope he one day will -- but I don't want him to miss out on anything. Sammy is 15; he should be getting excited about getting his driver's license, hanging out with his friends at football games, thinking about college, and flirting with girls. Those are the norms. What is normal? I accept my brother for whole he is and I love him for all of his strengths -- I don't think there is a "normal." But, I don't want him to miss out on these so-called "norms" either.
Many tell my mom, my brother, or me that we do amazing things for Sammy. We're just his mother, his brother, his sister... we aren't anything special. Yes, I think that we each have our own special part in Sammy's life and we each do great things for him -- but none of us measure up to the remarkable kind of young man he is becoming. Not only is he unable to share his wants, needs beliefs, thoughts -- but he misses out on things that are perceived as "the norm." Jack and Sammy are so close in age. Jack has a girlfriend, he's getting ready for high school, he wants to be with his friends -- whose to say that Sammy doesn't have these same wants? Just because he has Autism, doesn't mean he shouldn't be able to experience it. This entry isn't about what Sammy is left out of -- it's about what Autism takes away from him. My mom said to me earlier today, "I appreciate everyone's positive comments but it doesn't take away the pain of Sammy having to face challenges." I get that. As his sister, I don't want him to face challenges -- I don't want him to struggle with things that everyone else can do without even thinking twice. I don't want him to have to settle for just hanging out in the presence of his family or our friends. I don't want him to go through his life without his thoughts and ideas not being heard. I want Sammy to get the happiness out of life that he deserves.
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.