June 30, 2009

Orange You Glad I Didn't Say Banana?

Henry visiting friends and showing off his eye gaze/communication skills by telling knock knock jokes. Well, actually the same knock knock joke over and over and over again (Hatch. Hatch who? Gesundheit!) Moments like this, after the initial thrill wears off, I have to remind myself that being annoying is an age appropriate behavior.


Tonight I asked my son Henry if it would be okay if I made a blog about our life together and his experiences as a kid with a significant physical disability. Since he is essentially non-verbal I offered my open right hand (palm up) for "yes" and my closed left hand (palm down) for "no" like I have thousands of times over the past several years. He wound up his arm to make his choice and gave me an emphatic yes!

I've long had conflicting impulses between preserving our privacy and wanting to share our successes and struggles with other people who may benefit from the information, whether it's identifying a useful resource or strategy for their own child or simply gaining a deeper understanding of what it's like to live with a disability. Today, the greater good wins. Tomorrow it's possible I may change my mind. In the meantime Henry will decide what appears here, as I'll be reviewing each entry with him for his approval.

What finally inspired me to start writing this was a recent conversation with a local journalist who is going to write a story about Henry and the high-tech, eye-gaze controlled communication device he will hopefully be getting sometime this summer (more about that soon). I was throwing out disability and medical jargon right and left and the poor guy couldn't keep up! I could relate; I too had never heard terms like "direct selection", "scanning" and "augmentative communication" until we began working with a speech language pathologist when Henry was 18-months-old.

I realized it would be nearly impossible to convey everything he needed to know for his story over the course of a couple conversations and that even some of my good friends (the writer was referred to us by a mutual friend) might not have a clear understanding of Henry skills and capacities. So, for everyone curious about Henry and how he is, the long answer is complicated, probably more extraordinary than you can imagine, and much more normal than you think.