PALS has become an intricate part of my life. My friends from there are very important to me and it takes up a lot of my time. Over New Years, Jack and I spent our time with PALS as counselors. It was an amazing experience and I brought in the New Year just like I wanted to - with fun, friends, and lots of love.
Sammy was home with a babysitter. When I think about my fun time at PALS, I start to feel guilty. Without Autism, Sammy probably would have been joining Jack and me as counselors at PALS over the New Year. Not only that, a regular 17 year old isn't home with a babysitter - he probably isn't even home on New Years Eve! He's either getting in to trouble with his friends or doing some kind of cool activity he had been planning for the holiday.
PALS is an incredible organization and gave the opportunity for friends to hang out regardless of having Down Syndrome on New Years - in a very "typical" type of way! Not only do these opportunities not exist for Sammy, but does he really even get the point of New Years? Does he know what he's missing? Does he even care? Is New Years over done and played out - so Sammy just knows what we all don't?
I start thinking, should I have stayed home for NYE? I had a great time and loved every second of my holiday. But, would hanging out with me make it more "normal" for Sammy? Would it make it less obvious that he is not the typical 17 year old on New Years Eve? Would it have been fun for him - or would he be embarrassed to be sitting at home with his 23 year old sister on New Years Eve watching the ball drop on TV.
Although Jack and I cannot live our lives in fear of Sammy missing out. We can't stay inside forever just because Sammy might not be capable of going to events... but how can we be true to our beliefs of "inclusion" and Sammy deserves to be in the community, if we don't do it ourselves? Are we letting Sammy down? Not saying that Jack or I did anything malicious by enjoying our New Years - but I can't help feeling bad, I can't help wishing he was there at midnight, I can't help craving the start of something like PALS for people like Sammy. I want Sammy to be able to enjoy the ball drop, the new year, just like everyone else - younger or older. I want him to make resolutions, have a New Years kiss, toast with champagne!
Even if he didn't have all of this, I would kill for Sammy to get a "Happy New Years" text from someone other than a family member - or to even just have a phone.
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.