Here’s a short CNN piece reflecting on the costs of autism. It’s not news to those of us who’ve been living with it, but I’m sure it will surprise the heck out of those friends of yours and mine who don’t know the numbers.
But there’s another poignant moment in this piece that is even harder to communicate to those around me, even to my three closest friends (the “newest” of whom I’ve known for over 20 years). It’s when the mother of the older boy speaks frankly about her worries for the future. I know in my heart that every parent of a child on the spectrum, no matter what level of impairment the child has or had, has these fears.
In showing what this feeling looks like whenever we let it out (almost never to parents of solely NT kids, of course), this piece accomplished something far more valuable than shedding light on the tallying of costs and societal losses from our struggling children. It’s showed our friends why we struggle, why we’re distracted, why we smile faintly at spelling bees and private schools and middling college opportunities.
We not only have these fears, but as we’ve grown close to others like us, older or younger, with boys or girls, we know parents who feel our same fears. And as for me, I know that if my son could come home from school today and decide not to have autism, my feelings will always stay on the same path as the parents I know.
(Free wisdom: it’s only been as a result of this past 4 years that I can begin to understand the inner workings of the mind of a friend I know who has a child with leukemia. My heart goes out to her because I know that although I have seemingly insurmountable fears, I don’t think they compare.)
How have you communicated these deep feelings to your friends and family? The closest I think I’ve really come was in sharing a phrase from a panel where I presented as a parent: “Hope and fear, delicately balanced.”