Sunday, January 15, 2012

Special Needs Parable

My little brother Joel has Down Syndrome. Or is it Downs Syndrome? I should probably know that. I am pretty sure his name is Joel. He also had severe seizures as an infant that caused brain damage, so he is not the typical Down Syndrome person who can live somewhat independently, take the bus, wipe trays at McDonald's, that kind of thing. Instead he functions at about a 1 year old level. That means he sort of babbles like a 1 year old would, except  his babbles aren't the "goo goo gah gah" cooings of a baby, but more the low guttural "UHHHHHHHHH!" of a 35 year old man. We're pretty used to it in my family, but he has been known to scare the shit out of kids and some adults in public. Not that it bothers him any. This is my favorite Joel story.
Once a more typically high functioning Down Syndrome man and his mother were at our house visiting. Joel was in the room making his usual noises and the visiting mother said "I wonder if Joel is actually trying to say something?" My mom replied "If he is, I wish I knew what he was saying, it would make things easier." That's when the Down Syndrome man said "I know what he's saying." My mom looked at him "You do?" "Yup, I know exactly he's saying!" The whole room was quiet. Everyone in the room was kind of stunned. Was there some sort of secret communication these two had? Some sort of almost telepathic language that you needed an extra chromosome to understand? Did he really know and understand what Joel was trying to say? Finally the visiting mom almost hesitantly said "Well..what's Joel saying?" The Down Syndrome man paused, then proudly said "He's saying "UHHHHHHHHH!"
There is probably a life lesson in there somewhere.

1 comment:

Heidi Iwashita said...

Very funny story! You are such a good writer:)

Has Joel been evaluated lately by a speech-language pathologist (SLP)? That is the field I am studying now. An SLP could probably recommend another mode of communication that would work for him (picture boards, electronic devices, sign language, what we call AAC). There are many ways to communicate besides speech.