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. For years, we had no idea why he was the way he was. His diagnosis was really open-ended — global developmental delay. We learned near the end of his tenth year with us that he has a rare genetic disorder. He has a genetic mutation called KCNQ2.
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.
While it’s wonderful to be on this journey with him — an experience I would not trade away — it can be lonely. KCNQ2 is very rare or at least not widely diagnosed. The stat we heard from our neurologist was about 300 people worldwide have this mutation. I hope this site will be therapeutic for me, interesting to others, and help Koan and his support team make connections.