This Is What It's Like To Be The Sibling Of Someone With A Significant Developmental Disability

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This Is What It’s Like To Be The Sibling Of Someone With A Developmental Disability

Kira Gilbertson

From the moment I wrote the title of this article, I have struggled. I am humbled by my inability to put into words the impact my brother, Joseph, has had on my life. I am going to give it my best damn try.

Joseph was born when I was 3-years old. He is my only sibling. I remember the day he was born. I dressed in my favorite pink flamingo jumper and I was so ready to meet this baby. I remember the tension in the room. My mommy was upset, but pulled me into bed with her. My daddy then handed Joseph to me. He looked different, not what I had expected. But of course I was excited, he was my baby brother.

Joseph was born with a rare condition called acrocephalosyndactyly type I (APERTS). The bones in his skull and many joints were fused. He had no defined fingers or toes. He had serious cardiac complications. All of these issues resulted in extended hospital stays and continued throughout our childhood.

Due to his constant hospitalization, I spent a lot of my childhood bouncing to different families who had offered to care for me while my parents were stuck far away at Seattle Children’s Hospital. Even as an adult it feels inappropriate to talk about my jealousy and feelings of abandonment. My parents did their very best to make a difficult situation tolerable. The four families I stayed with were always beyond kind and I was always well cared for, if not spoiled. But it does not change the fact that I wanted my family together and I began to resent my helpless little brother.

My contact with Joseph as a young child was limited. Not just because of his hospitalizations, but because he was so fragile. I was constantly being told that I needed to be careful with Joseph. He always seemed to be healing from one surgery or another. Dressing changes and medications were simply a part of our household routine.

As we aged, it started to become more clear to me that Joseph was not reaching the developmental milestones of his peers. Slowly the gap between his understanding and abilities and my own became very clear. Our family’s hopes and dreams for Joseph shifted to accommodate his potential.

I remember the first time I realized just how different our lives would be. I was a senior in high school and Joseph had started his freshman year. I had just finished taking homecoming pictures and Joseph caught my eye. He was swinging his hands and humming, a very common self-stimulation for him. I flashed back to my freshman homecoming and all the excitement it entailed. Joseph did not have that. He would never have that.

I have graduated college (a few times over), married, bought a home, had three kids. I have many mistakes and accomplishments under my belt. But Joseph is stuck. His body has aged around him, but his mind has remained childlike. He struggles with change, and he struggles to control his emotions. He has very limited independence and is fully reliant on our parents for his every need.

I would be lying if I said that I do not sometimes imagine what Joseph would be like if he was born typical. I fantasize about a typical sibling relationship and what it must be like to have that built-in confidant. I am jealous of the close bond my children share with one another.

My relationship with my brother is genuinely unique. We have a handful of inside jokes, and there is a strict routine to most of our interactions. The redundancy of our relationship is comforting for him, but frustrating for me. I wish our relationship could evolve into adulthood, but it is stuck in adolescence, like Joseph.

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