Welcome to chaos – embrace life with someone unusual. This blog is a place to come when you are overwhelmed, and leave with a smile. A place for appreciators of unusual people, and what they have to offer the world. This is a blog about life with Owen, our pesky, invasive, gentle, destructive and love-able son.
In our lives, Chaos was the name for the huge inflatable black and white orca that Owen fell in love with one summer in the aisles of a grocery store. The story of Chaos the whale was the beginning of my writing about Owen. That story became an essay published in The Washington Post Style Section, summer of 2008. Writing essays has been a huge help, giving me an outlet and lending perspective on this interesting job of being Owen’s mom. But it has become a way to share what I have learned. A way to share, because I realize not everybody has one. An Owen, to help them see.
Owen has a chromosomal deletion, in the fifth chromosome at band 13 – so he’s called 5p -13. But that doesn’t tell you much. He has “autistic behaviors” – this may tell you a little. Whether he can be clinically called autistic, OCD, nonverbal – labels will only take you so far. A specialist at John’s Hopkins once described Owen as “not exactly garden variety.”
To know someone who isn’t able to communicate much, you learn to read him — his body, or his hesitations. You read, for instance, his eddy ( I call it an eddy when Owen turns round and round). The thoughtful eddy of contemplation. The quick getaway-before-mom-sees-me eddy through the kitchen which leaves five bitten pears in its wake. The rapturous eddy of delight, when he realizes he is about to get something he really wants!
However science defines him, Owen, a unique individual, is here — in my life and yours. He has something to teach us. Strap on your safety belts.