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Growing Up with Ben – Life with a Sibling with a Disability

What are the unique needs and experiences of growing up with a sibling with a disability? Our friend Aubrey shares insight into growing up with Ben, her older brother with significant developmental disabilities in today’s post.

Aubrey and Ben Aubrey and her brother, Ben

I was silent about both the struggles my family endured as well as the laughter my brother Ben brought to our lives until my first year of college. Having an older brother with severe developmental disabilities meant my life looked very different from my fellow classmates, classmates who didn't understand disabilities first hand. I vividly remember an event where a change in routine caused a flip to switch in my brother that he couldn't control. He was attending my sporting event with our parents, and at 6’3” and well over 200 lbs., his outburst was dangerous, intimidating, and I’m sure confusing for the many bystanders.

Boerema family photo The Boerema family

When faced with questions from friends, I remember feeling so torn. I didn’t know how to be honest about the frustrating and sometimes scary reality of life with Ben while at the same time communicating that he was, still is, and always would be, the older brother I loved dearly and couldn’t imagine life without. Explaining the frequent ugliness of his diagnosis seemed like betrayal to a brother who I knew would feel great remorse for his uncontrollable actions a couple of hours later.

It wasn't until I realized that I could be a voice for Ben that I opened up. Now, after a few years of discussions and reflection, I would like to offer some insight on what was helpful growing up, what would have been helpful, and what I need now, as an adult.

What Was Helpful

  • For the last 25+ years, a friend of our family has prayed for Ben every Tuesday (and still does). He called my parents often for updates, and would always call or visit on Ben’s birthday as well as send a card, usually with a gift. Knowing that someone besides a family member truly cared for Ben was and is encouraging and uplifting.

  • When I was nearing the end of high school, my church got a new youth pastor, whose wife had a sister very similar to Ben. Being able to talk about some of the hard things as well as the joys made processing easier and brought a connection different than others I had while growing up.

What Would Have Been Helpful

  • A Support group.

    A support group with peers who had similar experiences and whose feelings I could relate to would have been incredibly therapeutic. I think having a safe place to talk about my disappointments and fears that otherwise stayed secret would have decreased my feelings of being alone and different. It would have also been wonderful to share the joyful moments, that often felt small compared to some of the negatives, with others who understood.

  • Professional counseling.

    Along with a support group, it might have been helpful to go to professional counseling. I didn’t receive any until last year, and now that I’ve been able to talk through it with a counselor, I wish I could have attended earlier in life.

  • Openness.

    Openness within my family would have allowed me to process the highs and lows as well. I know my parents wanted to shield me from the difficulties as much as they could, and although I am grateful for their wisdom, I am even more grateful for the times we are now able to talk openly about the hard times. A family goes through many highs and lows together. As painful as it is to talk about the “hard stuff”, such as the wishes and dreams that are desired for the sibling yet won’t be reached, it’s important to uncover those hurts. It’s also vital to talk about the delight the sibling brings to the family, as it can be easy to overlook the gift of being blessed with a sibling with disabilities. I’ve learned more about life from Ben than from any other person.

  • Genuine Interest. 

    Something I have always wanted is the ability to know if those who asked questions were genuinely interested in knowing who Ben was as an individual. I would have felt much more comfortable talking to people about the joys and hardships if I knew they were willing to learn before judging, and love before dismissing.

All of the above are still needed and greatly appreciated. With the blessing and challenge of a sibling with disabilities comes a need for openness, honesty, and a network of support. After realizing how I can be an even greater part of Ben’s life, I have a different perspective on who I am as Ben’s little sister than I did growing up. I still have torn feelings when asked hard questions, but I understand now that I, along with my family members and those close to Ben, can be the voice he doesn’t have.

Join a Sibling Support Group

If you know of a child in the Grand Rapids (MI) area that would benefit from a sibling support group, we invite you to explore the monthly sessions offered at Family Tree Therapies (Grand Rapids, MI). You can learn more on their website.

Aubrey and BenAubrey Boerema is a fourth-year student at Calvin College, studying Therapeutic Recreation and Business Management. She loves spending time with family on her parents' farm, and enjoys participating in equine therapy for children at Rainbow Ranch, Inc. in New Era, MI.