I was recently speaking with a mother of a child with Autism and we started discussing what its like the be a sibling. She told me how her daughter really looks up to the people who come in and out of the house for her brother. Then she told me something her daughter told me that really stuck to me... She said, one day she to me, "Everyone who rings the doorbell is for my brother, why not me?"
This got me thinking. I was the same way. I clung to people who worked with my brother. They were my older sisters/brothers. I looked up to them. I wanted to be them. They were my role models. I copied them, and tried to dress like them. I died for them to notice me. I looked forward to talking to them.
This also made me realize why I usually cling to friends I meet in the Autism community, co-workers or fellow volunteers. Most people would leave their work-friends at work, but I can never do that. My first friends were those therapists that worked with my brother, because they were the first people to show me something that I was going to love: therapy, helping people with Autism, making a difference for my brother. Who were your first friends? Probably people your age, who wanted to play house, video games, or ride bikes.
Being a sibling isn't just about loving your brother or sister no matter what their disability. It isn't even about dedicating your life to a career helping people with disability. But sometimes it is. It just happens, whether you plan it or not.
Sammy was a life changer. All of a sudden I had a baby brother who got 10x more the expected "new baby" attention. And as I was growing into the age of wanting to make friends, was when therapists were in and out of our house. Of course I wondered, why him? Why not me? Obviously I understand why now, but when you're little... you don't completely get it. Even if you know that these people are here to help your brother and you want your brother to get better.
I have always wanted to start a Sibling Support Group for siblings of Autism, but after talking to that mother - I know that I am ready to lead one and this has become my new #1 project in my life. I know that I am way better off with Sammy in my life and I know I should appreciate my life way more because of the difficulties he goes through everyday. However, when the whole process starts - its tough to see that. It's tough not to resent. Plus, isn't it nice to have people to vent to who actually 110% get it?
Do you ever hate a certain part of your life? As much as you try to be appreciative... or see the bright side... or be happy for the good parts... you still resent things?
I love Sammy. I love what he has done for my life. And as much as it pains me to put into print, I don't think I love Autism - I think I hate it. When I work with clients, or I see Sammy - I hate it. The things they miss out on. The things they struggle with everyday. Is it fair? No!
I don't hate Sammy. I don't hate what he has done to my life. In fact, I appreciate it. I don't hate my clients. That's not what I mean. What I mean, is that I hate what Autism has done to their lives.
I am resigning from my job. Sammy has no idea what that means. I just aced a quiz. Sammy has no idea what that feels like. My boyfriend broke up with me. Sammy hasn't ever had a girlfriend. Jack is dealing with the dramatics of high school. Sammy doesn't even go to high school. Jack just got his first job. Will Sammy ever get a job? I need a job with benefits. My clients are struggling to get volunteer jobs (will Sammy?). I want to pursue a further education. My clients (and Sammy) have barely mastered the basics. I live on my own. My clients still live with their parents at age 21 and older (what will Sammy be doing?)
And even if we go with the selfish side - I want to talk to my brother, Sammy, about my latest problems. I want to brag to him about my accomplishments. I want to fight with him about stupid stuff. I want to take him shopping and pick out "cool clothes." I want him to ask me for girl advice. I want him to visit me for a weekend in Baltimore like Jack does. As much as I try to make some of these things happen for Sammy and me - Autism always gets in the way some way or another.
As much as Autism brings into my life, I hate what it has taken away from my brother.
I hate what it has taken from 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.