My friend Pam let me borrow a book to read on my trip to Texas. Sometime within the first 15 minutes of my flight that book became mine. Sorry, Pam. I wrote all over it. I fished a pen out of my purse and furiously underlined sentences, wrote comments in the margins and drew stars and exclamation points on the pages. (I've already ordered you a new one). The book is titled "Changed by a Child- Companion Notes for Parents of a Child with a Disability" by Barbara Gill. At the front of the book Barbara gives permission to share the stories and insightsfrom the book. Here's an entry that I wanted to pass along:
It's not that easy being green. - Kermit the Frog
It's not easy being green, even by association. As parents of children with disabilities, we are what the sociologist Erving Goffman calls "wise ones" meaning "in the know." Because of our relationship to someone who has a disability, we have a special knowledge and experience of disability, even though we are not disabled ourselves. And we react to our "greenness" in different ways. Some of us want to hang out almost exclusively with green folk. Some of us don't want anything to do with other green people. When we are away from our child, many of us choose to "pass", not revealing that we're really green, while others readily talk about their greenness. Whether we mostly tend to "pass" or mostly tend to "tell", there is always a choice to be made, which in itself can be wearing.
We struggle with our greenness, but our greater pain is knowing that our child has this struggle. It can be difficult for us to separate from our child, remembering that he/she, not we, has the disability and that his/her experience of it is different from ours. As our children grow older, they will find their own ways to think about and deal with their disabilities.
It's not always easy being green. Being wise isn't always easy, either.