On the day of Sammy's 18th birthday, I have decided to come out of my hole and finally post a long awaited post. The summer was busy with PALS and I have been writing a lot for magazines. I have a long list of blog post ideas but I just haven't had the time.
As I have begun my new job at Kennedy Krieger Institute, I realize more and more the constant struggle I battle between my selves inside my head. On one hand, I am a sibling, I am a family member. I see that side. I see the side of what the parents might be thinking. I want to interact with patients and other individuals with special needs like I would with my brother. That comes natural. I want to take care of them and make them feel safe. I want them to have fun and be happy.
However, I also see my "therapeutic" side come in where I am stern and push for results. I push my brother, or anyone I work with to do their best, to be independent. Because I know they can do it. I don't expect nothing, but I don't expect something unrealistic. I am constantly battling with the fact that I know they can put their shoes on all by themselves. I don't mind waiting on them to do it. But, I also want to be their caretaker and do it for them. Not to take away their sense of independence or minimize their skills, but because I want them to feel at home, I want them to be comfortable.
When I talk with other people in my career path, I constantly hear the words, "Well, if the mom would just listen to me in regards to treatment..." I get that. It's so frustrating to work with an individual in any setting, see them progress, and then go home and lose it or just not use it because they can get away with it. Not that any parent or family does it on purpose, but its because, that child is 110% the therapist's responsibility for "x" amount of hours and it is their #1 focus to treat them. But when they go home, their parents have bills, have meals to cook, have other children, have jobs, etc. Although their child's well-being is 110% or more their priority, there simply isn't enough time or resources for a parent to follow protocol 24/7. In every setting I've ever worked in, we are told, at the end of the day, these kids go home to their families. How is it possible to balance productive supports, lessons, treatments, etc. if they may not be able to be followed at home? Any family would do anything for their individual with Autism, but life gets in the way. Autism may be "our way of life." But it isn't the only part of our lives.
I am constantly battling when I am working, volunteering, or with Sammy. Should I do this because I am a sibling? Should I do this because this is my career? Am I "therapying" Sammy too much at home? Am I being too "family" at work? Don't take your work home. But, I do because this is my life. Where is the line drawn? I mean there is a line, but there is also a spot where I know my expectations for my brother... where does that place me in the workplace? At home?
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.