BY PAIGE TALHELM
My brother has every right to be in church, the store, or a restaurant • So I do feel bad, not for myself, but for Sammy • He is just being himself • Is he hurt by people’s reactions? • What is he thinking? • These questions fill my mind and drive me crazy every day •
My brother, Sammy, is six years younger than me. He is 17 years old with autism. He is non-verbal and is not toilet
trained. Sammy is classified as “severely” autistic and will probably remain in my mom’s care for the rest of his life, even after reaching the age of 21. He is the light of my life, my inspiration, and my push to be the person that I am and will become. But this was not always the case, as I’m sure it is for many other siblings. In my case, being an only child and suddenly being thrown into the older sister position after so long of getting all of the attention was
intense. But it is especially intense for situations like mine, where my brother requires ten times the attention, care, and assistance.
As Sammy’s sister, I am often asked what is one thing I would like to tell other siblings of autism (or other disabilities). A million things come to mind – there is so much to consider, so much to tell. Do you want to know how I feel now? How I felt when he was first diagnosed? What it was like when we were growing up?
But the most important thing that comes to mind is to remember, you are important. You are a part of this. Your life is changed forever. Autism is now a huge part of your life. You also have every right to be upset, struggle with jealousy, or think you’re missing out. Your life is not the same as any other “typical” family. Which has me
question – what is “typical,” exactly?
Sammy has changed my way of looking at things. Such as, there is no normal. Such as, every family has its quirks, its differences. One of our “quirks” is that my brother has autism. That means we might be leaving the store midway through a shopping trip because he just had a meltdown, or it might mean being stared at in church because my brother was making loud noises. I think this is one of the most frustrating things I deal with as a sister. Being stared at – is annoying. Being judged – is hurtful. Being the obvious source of everyone’s disgust – is embarrassing.
But why should I feel bad? Why should my family get up and leave? My brother has every right to be in church, the store, or a restaurant. So I do feel bad. Not for myself, but for Sammy. He is just being himself. He is just expressing his feelings the only was he knows how. Is he hurt by people’s reactions? What is he thinking? How does he feel about this? These questions fill my mind and drive me crazy every day.
Individuals with autism have minimal ways to communicate. Especially my brother, he uses ProLoQuo2Go on the iPad, but he only can formulate short sentences that express, “I want ___.” There is not an option for him to communicate how his day was or what is bothering him. Can you imagine being stuck in your own body and not being able to tell someone that you are having a bad day or you like a certain song? So, why should these individuals be punished – or viewed as “not normal” – just because their way of coping with things are different from what is perceived as “typical?”
Recently, I was telling a lady in a waiting room that I wanted to work with individuals with special needs as my career. Her first reaction was anything but kind. She then began to tell me that she began waitressing after she had retired and didn’t understand why the caretakers of people with special needs even bothered to bring them out of the house. I was astonished. I was hurt. I was disappointed. Why should my brother stay at home and miss out on eating at a restaurant or going to the movies? We are all humans, and that is what we are FIRST, regardless of any label, diagnosis, job title, etc.
I tried to express my feelings from a sister’s point of view to this stranger, but she really could not grasp what I was saying. My brother does not have a voice, so I need to be a voice for him. Not that I would ever want to put words in his mouth, because I can never truly know. But, as his sister, I cannot just walk away from people like that without trying to explain. Not just for my brother’s feelings, but for mine as well. For all siblings. Families should not be cooped up in their houses because the public doesn’t accept their family member with autism. We all deserve these experiences.
Something that constantly bugs me, as a sister, is I have been through high school and most of college now. I have experienced attending the prom, heartbreak, getting into college, getting my first job, and many other things. Some of these experiences are sad, some are life-changing, and some are happy occasions. But whatbreaks my heart is I don’t know what, or if Sammy will be able to ever experience any of these events. Again, having Sammy in my life has helped me view things differently. Even though it hurts, even though I don’t want to deal with the struggles of life – I can be thankful for them because Sammy may not even have the chance to be a part of those things. Being a sibling has taught me to be appreciative of many experiences in my life. Even something as sad and hurtful as my first heartbreak can be considered a blessing. You learn from it, you change because of it, and you become who you are. I am not sure Sammy will ever experience his first kiss, a crush, love or a break up. Yet, Sammy works harder than anyone I know, every single day, to do the simplest tasks that we all take for granted.
He does it with a smile on his face, and he keeps going. As siblings, we build our own lives. For me, that means that
Sammy will always be a part of it. And this seems to be true as well for the majority of siblings I have ever talked to. I
want Sammy to live with me at some point so he can experience “living away from home” as much as he can. On the other hand, I do live my own life too. I go away on trips, I live away from home in my own apartment. Sometimes, it hurts me to go away with my other brother because I feel bad, thinking Sammy should be with us. Any other family dynamic, he would be. As hard as it is, and I am still struggling with it, siblings shouldn’t feel bad – we are doing
what we need to do to take a break and make ourselves happy.
One of the most important things to me as a sibling is having an outlet. When someone is diagnosed with autism, there are interventions for that child. When a parent’s child is first diagnosed, there are programs to help them cope—as there should be. (Although when my brother was diagnosed, not a lot was known about autism, it was a lot for my mom to take in. She was running him from one therapy to another doctor appointment.) But I have noticed that there is not much for siblings. I would have loved having the support system back then that I have now.
Talking with other siblings of disabilities is incredibly helpful for me, as it would be for all siblings. Having friends in your life who also have an interest in helping individuals with special needs is just as incredible. I think I can speak for most families when I say that we are so thankful for those individuals that make a difference in the life of our sibling/child who has a disability. Knowing that these people exist without a direct link (such a sibling or other family member) is so heartwarming.
Having a significant other when one has a sibling with special needs is something I think many in a similar situation struggle with. After all, taking in our sibling will very much be a part of our future. For the prospective spouse, it is overwhelming enough to decide who to spend the rest of their life with, let alone be willing to take on that person’s severely disabled sibling later in life. How can people be sure?
Yes, being a sibling of autism affects all parts of my life. Although at times it is hard, Sammy has made me who I am. And I can promise every single sibling – or anyone who works with someone with autism – that they will open your eyes to a different, much better world.•
ABOUT THE AUTHOR:
Paige Talhelm, 23, from Baltimore, MD, is director of Camp PALS Poconos of PALS Programs, and Advocate for The Next Step Programs. She will graduate with a Bachelor of Arts degree in Psychology on May 2015, and then will pursue a Master’s degree in Education of Autism and Pervasive Disorders at Johns Hopkins in Fall 2015. She would like to create a program for continued education, job searching, life skills, for individuals with autism after 21. Read about her life as Sammy’s sister on my blog: www.sammyssister.weebly.com