If only Jason could speak clearly

I have become convinced that most families with a special challenge convince themselves that if one thing were different all would be a bowl of cherries. No matter how sanguine we get about our obstacles, no matter how much we persuade ourselves we can deal with them, we harbor a deep belief that one thing could change the ballgame.

For us, we always believed that if only Jason, our Down Syndrome son, could speak more clearly his life and ours would be exponentially better. With a normal child you can sit down to explore feelings, frustrations and moods. Hundreds of times we wanted to shout, “Please just tell us what you’re thinking!”

Body language, sentence fragments, intricate mimes and dramatic expressions were Jason’s communication currency. Jason’s true feelings and insights have always been imprisoned by his failure to adequately communicate. It is obvious much great wisdom and insight is crushed by his inability to speak clearly.

There was no stunning moment of clarity when we realized Jason would not be a verbal Down syndrome child. It was probably our earliest jealousy. We accepted the Down syndrome reality, but when other DS kids showed verbal potential we knew our verbal sled was in much deeper snow. Jason often woke us with his babbling in bed and we held out hope that someday intelligible words would rise from those scrambled sounds.

By the time he was four it was clear he desperately wanted to communicate. His frustration was undisguised because he thought he was talking just as we were. The key to appreciating Jason’s verbal abilities is to understand that he really believes he’s saying words just like you are. He used to get very angry when I would correct him on the pronunciation of a word such as taco. He repeated distinctly and carefully, as if I were a particularly slow guy, Caco! “No, Jason, its Taco. He spit back, “I said Caco!” Oh.

We’ve never understood that speech difficulty. I don’t know if his brain hears the word correctly and his tongue simply can’t pronounce it, or if there’s a broken synapse somewhere between the brain and his tongue. Whatever it is, that inability to communicate clearly has shaped who Jason is and who we are. I truly believe that he has a special, though disabled mind. If he could speak more clearly his life would be fundamentally different.

But then you accept him for what he is and gratitude wins the day.



Taken from the upcoming book, Some people Even Take Them Home A disabled dad, a Down syndrome son and our journey to acceptance

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