As much as I fear for my brother's future, I also fear for my own. He is a huge part of my life, in fact he is the main push for most of the things I do in life. I am thankful for him and he is my inspiration - his future is my future. And that, is what I fear.
Not that I am not willing to do it. I would drop anything and everything for him. When it comes time, I will be his sole care giver. I will do so without even looking back. That won't even cross my mind. I know it may seem unrealistic, but taking care of my brother has been in my plans since I was a young girl. I've always had the idea to have him live with me for a year, so he can get out of the house, give my mom a break, and he can kind of live an "adult lifestyle." I have made my mind up about this matter and nothing and no one will stand in my way.
However, I wonder to myself as I get older, as my brother gets older, as this time together gets closer -- will I be able to do it? Yes, I grew up with Sammy and was a huge part of his care giving. But at the end of the day, it was my mom doing it all. She is the one who provides for him, dresses him, takes off for any appointments, picks him up from school early if he's sick, signs all of the legal documents, deals with the things he accidentally destroys, cleans up his messes, etc. Yes, I've helped -- but I'm still his sister and I get to go back to my house in Baltimore. My mom lives it.
Even though my mom would never force this plan on me, I want to do it. I have been planning my life around this. I want to develop a program that Sammy will be able to attend while I'm working and come home with me at night. This is what I'm working for. But I don't want to ever resent him. I don't want to feel like anything was taken from me. Will I be living like a normal young woman at whatever age this happens? Will this change things for me and my future family? Will anyone even be willing to take this on? A joke was made at a recent Sibling Panel that our brothers and sisters with Autism are our "boyfriend filter." Another girl made the point that it must be a pretty good filter because she's 33 and still single. I would never want to be with anyone who cannot accept my brother -- but it is a lot to ask, "Hey, I know we've only been hanging out a little while but for this to go anywhere at all, just FYI, my brother with Autism will be moving in with me permanently eventually."
As I'm writing this, I feel like this sounds like, "poor me" or that I don't want to take care of my brother. I hope it doesn't come across like that at all because there is no way that is how I feel. I'm afraid I won't be able to do it. Will I make Sammy happy like my mom can? Will I be able to provide for him appropriately as we both get older? Will I accomplish what I want to accomplish for him? This is the most exciting part of my life as I finish school, accomplish my goals, create my program, experience new people/ideas, and get closer to my main dream -- but what if it doesn't measure up to what I've built up in my head? Sammy deserves the best, and I want to give him that.
Also... on a completely different note, when my brother was first undergoing at-home treatments/therapies, my mom contacted Dickinson College in hopes that some of the Psychology students would want to help run his program by working with him. The wonderful, Jen Krom, not only volunteered but changed my brother's life. She has become an amazing inspiration and one of my top role models. I cannot thank her enough for what she has done for my brother and for what she is doing for individuals on the Autism spectrum. Please visit her website.
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.