For the past years, my family and I have not been going on vacation as a whole. My mom would go on small trips by ourselves sometimes, but not even really that recently. When going on my vacation with my mom and my brothers -- we have to take a lot into consideration that most families probably do not. Where will Sammy sleep? What will we do if he doesn't want to go to bed all night? What if he has a meltdown on the beach? What if he doesn't want the food at the restaurant we go to? What if he doesn't feel like walking on the boardwalk? What if he soaks the sheets in the middle of the night? Will he break anything in the room? And on and on...
This year, we planned a vacation and struggled with the decision on whether or not to take Sammy. It pained my mom, Jack, and I to make this decision because we hate excluding him. However, is it really a vacation if my mom is on duty 24/7? If she still has to spend her time cleaning sheets and changing diapers? Is it fair to Jack and me if we have to leave in the middle of the day at the beach or during mini golf because Sammy is "not feeling it?" I know this sounds so harsh, but we did make the decision to go on vacation without him. His absence was an incredible feeling we could not avoid.
Although we felt guilty all week, is this what the life of Autism eventually comes? You can no longer go on vacation together? You have to plan separate trips? You need a babysitter for him so your parents can focus on the important parts of the other siblings' lives - graduation, confirmation, etc? Is this torture to Sammy? Sammy is definitely not a fan of sitting still and being quiet for a long period of time - so is he "getting out" of an activity that the rest of us endure whether we like it or not? Or does he feel excluded?
I think its good for families of Autism to get a break of the life once and awhile. But does normal become a drug? Not saying they dislike their sibling or son for having Autism - but do they start to crave that sense of normalcy? What I think is sad is that we even have to take a break from it -- not sad on my family's part but sad on the rest of the population's part. We have to take a break because other people are not accepting or helpful when it comes to people like Sammy. We don't leave the beach because we want to, we leave the beach because Sammy might be bugging others. We don't leave him at home during graduation ceremonies because we don't want him there, we don't want him to be too loud for other families. We don't take him out of church when he gets loud because that's what he wants, we do it so other people can hear the priest. I am a huge believer in pushing Sammy to do things whether he likes them or not -- he is a clever guy and knows how to push the limits to get out of something he does not want to do. So, the only reason we "exit" certain situations is to be kind to the surrounding people. Why aren't they showing the same graces? Why aren't they stopping the stares and thinking, "well he deserves to be here just as much as we do?"
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.