BY CHRISTY HAWKINS
Growing up with a brother that was prone to out of the blue temper tantrums limited family vacations. The evening
hours after he returned from school after another day of angst with his peers and all that stimuli would always pose some challenges. Not to mention my brother’s difficulty with the classroom expectations and the frustration of his teachers. He was so smart, so capable. So why could he not produce the work? And why would he have to wash his hands a hundred times a day? Why could he not stay in his seat when a dust ball caught his eye in the corner of the classroom?
As his temper tantrums went through a phase of turning physical, either via his own actions towards himself, others, or against our efforts to restrain him, it didn’t take long for most of my friends to request that we hang out elsewhere. There were friends that didn’t call back at all but, even at a young age, I never blamed my brother. I knew him, I understood him and I learned at a young age how to advocate for him AND myself.
I ran into a childhood friend recently and after a brief catch up, he asked, “Hey, how is your brother? Does he still vacuum the lawn?” Laughter followed his question as he said, “I used to get such a kick out of it. My mother was jealous that she didn’t have a cleaner for a son.”
Anyone that is a sibling to a sibling with special needs has likely dozens upon dozens of these types of stories and memories. Living these stories often hurt, and reviewing them now as an adult that knows how my brother’s life has evolved can still be painful. We wonder if their lives are “enough?” Did we, as the siblings, do “enough?” My fiancé is a wonderful man that knew me growing up, knew my brother, and I know that there are many reasons why he is the man for me. One important reason for me is that I have to explain my brother less to him. Not that there isn’t explaining, along with the regular conversation broached with fear of how we may be the ones to ultimately be responsible for my brother…thus, every decision we make now is determined by “what if?”
However, the hurt then and the pain now is still not for myself. No matter how hard I try to feel sorry for myself, it just doesn’t work. I might have a moment here and there but it is quickly replaced with an empathy for my brother and a determination to continue to help him better his life while living my own as much as I can. That has elicited a lot of sacrifice but no regrets. I am able to say this in large part because although my parent’s struggled raising a child on the spectrum before so many of the current supports were even considered, I was placed in a Sibling
Support group at the age of nine at my brother’s preschool. Thus, while he was receiving early intervention services, so was I.
Twenty-five years ago, this preschool was likely ahead of its time in anticipating how to cater to families with special needs. As they brought me into the classroom with my brother, I watched him through the window of the gym, I observed as the teachers held him tightly when he needed to cry it out and then I was able to meet with the other siblings later for a sort of “debriefing.” I had no idea of knowing then that by providing such an intimate view into his world, along with a proper time, place and way to vent my own feelings of confusion, helplessness and sometimes anger, that it would ultimately strengthen our brother-sister bond.
The therapist that led this sibling group did myself and my family a major service by first, speaking to the siblings in the same manner that one would speak to adults – which having a younger brother with special needs pretty much guaranteed. I remember the therapist firmly and factually explaining that being the big brother or big sister might be the hardest job we would ever have but that if we did that job with love and understanding, it would feel a lot less like a job – because, ultimately, being a brother or sister wasn’t a job. It was a privilege, and we were lucky to have siblings!
It was through my sibling support experience that I learned an invaluable lesson at a young age. When you become grateful for what you have, there is much less room for resentment to grow. The therapist validated our feelings by listening, and we learned how to communicate so that our own needs were heard. I remember telling the group how difficult the previous evening had been, how hard it was to go to sleep because my parents didn’t have the antidote to soothe my brother’s meltdown. Then I remember the therapist gently reminding me how I shared that, before the birth of my brother, I used to keep myself awake as long as possible just so I could say extra prayers that the universe
would send me a little brother.
Also, hearing the hesitancy to “hang out” from your peers was much easier to handle when you were able to talk to other siblings that shared that frustration. The entire sibling support experience strengthened my internal voice and my external voice in being able to speak about my brother. Being the sister was tough, but the more I loved my brother and understood the world through his eyes, the better overall person I believe I have grown to be.
It is hard to believe that nearly 25 years have passed since my first days of attending the sibling support group. The coping skills I learned then seem to be just as relevant today, case in point, discussing my brother’s potential future needs with my fiancé. I understand that this kind of emotional hypothesizing for families is extremely difficult, however, the sibling support group also helped me grow some early roots in the ability to self-determine, yet also advocate for my brother when need be.
As long as we have a sibling with special needs, these life skills will always be necessary and “that” conversation will always be happening in one way or another. I cannot encourage parents enough to seek out supportive settings for siblings and, even if there is resistance, try to contract with them to go at least twice. The sibling may not see the point and, guaranteed, they might prefer to spend time with their friends. However, to be able to bond with a group of peers going through a unique experience may ultimately be an opportunity to provide life-long tools.•
ABOUT THE AUTHOR:
Christy Hawkins, LMSW is an instructor/counselor at NYITs Vocational Independence Program in Islip, NY and also a therapist with Family Service League on the north fork of Long Island.
