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