“The first and fundamental principle is simple: always tell the truth. No matter how difficult, unwieldy, or frightening, it is better by far to acknowledge what is actually happening. Yes, this is hard – especially if you are talking about painful and messy procedures, serious permanent disabilities, or the possibility of death. But even the youngest children have the capacity to understand what is happening, and developing a framework will help them cope with the process. Saying “this will hurt” is always better than pretending otherwise. Saying “we don’t know what will happen” is always better than promising a miracle that might not come.”
- from an interview with Bee Lavender , author of the award-winning memoir Lessons in Taxidermy.
Find more about this interview with Lavender on Julia Roberts’ website Support for Special Needs.com.
While poking around online, I came across the supportforspecialneeds.com website. It’s a good one. In her post “There are Side Effects to Surviving” Roberts draws connections between a special needs kid coping with pain (mental and bodily) and Lavender’s own remarkable history of survival from childhood cancer, teen pregnancy, shocking accidents.
I confess I read the article “There Are Side Effects to Surviving” and thought of myself, not Owen. Owen seems to experience very little frustration, to be content with what he gets and supplement it with what he swipes. I wonder if this is true, or if he simply does not express how very frustrating it is to be unable to tell people what he wants or needs. He does like to swipe things, true enough, which I’ve always considered a healthy sign of independence!
To connect with Julia’s site, check out the link: http://supportforspecialneeds.com/2015/01/02/there-are-side-effects-to-surviving
Embracing Chaos 