Down syndrome sibling leaves a profound imprint on every family

A close friend sent me an article from the Sept 30 edition of The Chicago Tribune which is a must read for anybody who cares about disability. The author of the Op Ed piece, Randi Gillespie, recounts how her son shouted at his Down syndrome sister “I wish you did not have Down syndrome.”

Gillespie and I both empathize with her little boy. Down syndrome can frustrate and embarrass siblings and I certainly believe the presence of my Down syndrome son profoundly changed the dynamics of our family, though largely for the better.

For us the embarrassment came mostly in the teenage years but teenagers are embarrassed by EVERYTHING.

For Jason’s siblings his early years were full of impact but they largely lacked the drama that was to come. My daughter Tracy definitely grew up faster because of Jason. She felt responsibility for him as early as four and that shaped her personality. In Kindergarten her teacher marveled at how Tracy was always the one to comfort a classmate with a skinned knee or a damaged psyche. She was on her way to developing a “broken bird,” care-giving personality. If a child was in trouble Tracy would be there, especially when Jason was involved. She just assumed responsibility. Seamlessly and with little notice, she guided him to the right places and coached proper behavior. In retrospect she was clearly the budding special education teacher she is now.

As a preteen Tracy always the caretaker, displayed no resentment toward Jason and she remembers none. Jason was her little brother and he demanded more vigilance than other little brothers. That was just the way it was.

Jeff’s early interaction with Jason was different because they started out as buddies. Jason was four when Jeff was born. For the first five or six years they were partners in crime. They laughed, squealed and found mischief together. Jason did not know the cookies were up there. Jeff did, but he couldn’t reach them. The duo quickly learned by pooling Jeff’s smarts and Jason’s brawn they could have a lot more fun and eat more cookies. They amused each other constantly.

The first real sign of difficulty came when we started to vest Jeff with more responsibility than Jason and when we asked Jeff to look out for his big brother. Jason did not like that at all and fairly often he expressed his anger and disappointment about that.

Jeff told me not long ago he has always felt just a little robbed of the experience of having a big brother.

The stamp will be different in every family, but never doubt that a disabled child will place his or her imprint on the family dynamics. For us, I believe with all my heart, it was a good imprint.

Some of the words above come from  my upcoming book  Some People Even Take Them Home


2 thoughts on “Down syndrome sibling leaves a profound imprint on every family

  1. Well said, Tim. I grew up with a Down Syndrome younger brother. I’m looking forward to your book.
    Paul LaRocque


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