A koan is an unanswerable riddle or parable that Zen Buddhist monks meditate upon to reach the enlightened state of Satori — ie…”What is the sound of one hand clapping?” It’s also the name of my youngest son. When Koan was born we had no idea he would face developmental challenges. His diagnosis is really open-ended — global developmental delay. We have no idea why he is the way he his. So, his name is really fitting.
My spouse, Jeri, said shortly after Koan was born, “We learn more from him than we’ll ever teach him.” This was not intended as a pessimistic statement, but rather it was her understanding that having a child like Koan is a fantastic adventure. It’s recently occurred to me that it would be a good use of time to share some of his gifts he’s given us with others: ideas and perspectives. I’m not claiming to be wise — far from it. Raising Koan is all about improvisation. But, the journey we are on with him has profoundly changed how I look at the world. I’m very eager to learn from others, too. So, I welcome an exchange of ideas.
The site’s name is my attempt to be clever. But for anyone who is wondering… Since Koan is non-verbal, his answers are almost always smiles and the occasional ASL sign for “more” particularly if there’s chocolate or hugs/kisses involved.
Koan does not walk, talk, or feed himself. He’s been examined by numerous doctors and specialists, but his disability does not fit into any single category. I can tell you what he’s not… He’s not autistic. He doesn’t have Downs Syndrome. He doesn’t have Angelman’s Syndrom — although he has many traits of an Angel — both in terms of the syndrome and the divine being.
While it’s a wonderful to be on this journey with him — an experience I would not trade away — it can be lonely. There are support groups and infrastructures for disabilities with names and labels. My family is blessed and cursed with the lack of expectations for Koan. I hope this site will be therapeutic for me, interesting to others, and help Koan and his support team make connections.