When you imagine having a child, do you imagine still changing diapers at age 16? Do you imagine still packing up a to-go bag full of snacks, toys, and diapers for them when you are going somewhere for a few hours? Absolutely not! But at 16, my brother still needs this to-go bag. I mean, everyone has their purse or their things they want to bring on a road trip -- but most kids by 16 can collect all of their belongings by themselves. Sammy cannot at this time. What does his bag consist of? Diapers, wipes, extra clothes, apple sauce for medicine, medicine, toys, communication book. Not to mention, my mom has to get him completely dressed and ready to go before they even head out the door. Not that any of this is Sammy's fault, but who seriously thinks they're going to be packing a diaper bag when their child is 16 years old?
Yesterday, my family road tripped down to MD to see me and in walked my mom with precisely this -- Sammy's to go bag. Although more comfortable in my house, usually, my mom would be found stressing and following Sammy around to make sure he didn't get into anything or pee on something. As soon as hit feet the kitchen though, he was off. A kitchen full of unprotected and unlocked cupboards. His dream come true. At home, there are locks on the fridge and cabinets so Sammy cannot get into them and eat endless amounts of food, or worse -- drink who knows what. Within minutes, I found a way to lock up each cabinet because there was no way we were going to relax and enjoy the day if someone had to constantly be on him. Other than that though, he was such a sweetie! He was loving the TV and couch in the living room and hung out downstairs listening to music.
I know that this might not sound like much and I know that many of you give Sammy this respect, but these little things are what really matter to me. My roommate and close friend, Laura, paid no attention to Sammy's mischief acted like she has been around Sammy for years -- blocking him from the cabinets and redirecting him. But what I loved the most was that most people would be pulled on by Sammy and just ignore it and move on -- but when Sammy pulled on Laura, she followed him and tried to figure out what he needed and offered things to him. She's amazing! Another thing that I loved was that during our traditional Hi-Lo game at dinner time, our friend, Ben (who is 15), said that his high was, "spending time with Paige, Sammy, Jack, and Michele." Although, so simple -- it was so sweet! To include Sammy means so much to me and it made my heart melt. I don't know what I'd do without these great people in his life!
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.