My Jason was the most resentful person in my family

Last Friday I wrote about an article from the Sept. 30 edition of The Chicago Tribune which I touted as a must read for anybody who cares about disability. The author of the Op Ed piece, Randi Gillespie, told how her seven-year-old son shouted at his nine-year-old Down syndrome sister “I wish you did not have Down syndrome.”

In my family the angriest person about Jason’s down syndrome was Jason himself.

The most maddening stereotype for me is that all Down syndrome people are happy, loving and contented. The fact is Down syndrome people have the same range of emotions all of us do. They can be happy and contented but they can also be angry, bitter and ticked off at their fate.

Our first exposure to the reality that Jason struggled with bitterness about his fate came a few months after his 16th birthday. He was in a McDonald’s with Tracy when she pointed out a Down syndrome woman at another table. Tracy said, “Jason look, she’s the same as you, she has Down syndrome.”

The reaction shook Tracy and revealed a truth none of us were ready to deal with.

Jason violently shook his head and exclaimed, “Tracy, I quit being Down syndrome! I’m sixteen now!”

Our first flip reaction was “if only it was that easy.” Slowly though the tragedy of the statement grew on us. At 18 and then again at 22 Jason expressed similar sentiments. At major milestones he apparently sincerely believed that he would “grow out it.”

We hadn’t even realized how much Jason actually focused on his disability. We never had a detailed talk about it. At my wife Jean’s instigation we seldom told him he couldn’t do something. When he made noises about driving Jean never told him he couldn’t drive. Instead, she said, “You can drive when you learn to read.” When he talked about getting married, she simply told him he could get married if he could find someone who wanted to marry him. That approach seemed to make sense to him.

Yet, it is still obvious at 35 that Jason knows his fate and wishes it were otherwise. That makes a Dad sad.

Some of the words in this post will be found in my upcoming book Some People Even Take Them Home.

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