What is the biggest moment in your life? Was it your graduation? Was it your wedding? Your child being born? Even if it hasn't happened yet, I'm sure you already know what the biggest moment in your life is going to be. Or at least you have an idea.
I already had mine. In the future, I might get married, get a promotion, have babies, watch my child go to prom, etc. But, I know that none of those things compare to the day I already had.
Sammy's guardianship hearing was by far the most important day of my life. I have been planning for it since I was old enough to look into the future. My brother would eventually live with me. Not because it is my responsibility. Because I want him to. There is no way I would ever let him waste away in some sort of "home."
I have dedicated my entire life to my brother and I am happy I have. However, the process for guardianship was intense and emotionally draining. His court appointed lawyer questioned my intentions. Which, on one hand, I was so happy that this complete stranger was looking out for my brother. However, even though it was his job and I totally understood, I came away from the conversation questioning myself. Wait, do I do enough? Should I do more?
Giving testimony and "proving" my dedication to my brother was unbelievably hard but something I would do over as many times as I needed to. I would go to the ends of the earth for my brother.
My future is Sammy. And that will not change even though the judge ruled that I was only appointed guardian if my mom or his dad dies.
This means that I am second in line. I am devastated. Something I have been working towards my whole life and I just got "2nd place." I have dedicated my entire life to my brother, as well as my mom has, and I'm not considered an "equal" guardian as her. The way I see it, I'm considered less than his dad. How does that make sense? I take off work, miss classes, travel two hours, etc. to make it to as many appointments, IEPs, take Sammy out in the community, etc. as I can. I'm not his parent and I do these things. Being "2nd place," makes me feel like I am less than what I am to Sammy. Or less than what Sammy is to me.
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.