I have a confession.
I’ve been avoiding you.
Listen, I don’t want this to get all weird or anything. I swear it’s not you. It’s me. But well, I needed a little space.
A lot has happened since our last conversation. No, really. A LOT. Yes, I know it’s only been a matter of days, but you know me well enough by now to know that a week in the life of this family elapses sort of like dog years – time happens in multiples of seven.
We live in Fast Forward, squeezing entire lifetimes between dawn and dusk. And as easy and natural as I find it to write about the small moments in between the sun’s traverse across the sky, it’s the big stuff that stymies me. I suddenly find myself mute when I have an actual story to tell.
I worry that the words won’t be big enough. That the very magnitude of the events will be lost in my attempt to narrate them. That I simply won’t be capable of wrangling the story onto the page.
But I feel a responsibility to try. Not for you, dear reader, but for my children, who will one day, I hope read all of this. Don’t get me wrong, I certainly feel a responsibility to you too. Of course I do. I adore you.
Anyway, responsibility, yes. God, I’m procrastinating.
OK, enough. Here’s the story.
Last summer, I got a message via Facebook from an old college friend. I hadn’t spoken to him since he graduated nearly *gasp* twenty years ago. (For those of you doing the math, I was eight at the time.)
Hi, Jess. I was searching the Internet for information about autism and I came to what I think is your blog. I saw the picture and knew immediately that it was you because you haven’t changed the slightest bit from college. Seriously, you look EXACTLY the same. I don’t know how you do it. You must still get carded all the time when you buy beer. (OK, he didn’t actually say any of that last part, but it was implied, people.) I’d love to chat if you have some time.
As happy as I was to hear from him after all these years, my heart sank. Unfortunately, I get an awful lot of ‘I was searching the Internet for information on autism and I came upon your blog.’ Parents who are wandering in the dark and scary place after diagnosis, friends who suspect that something in their child’s development is amiss, people desperately seeking connection to someone who’s been there.
I wrote back and we set up a time to talk.
As soon as we’d caught up, I told him that I assumed that he was coming to me because he had concerns about one of his children. He quickly assured me that he did not. At that point, I was simply confused.
He explained that he works as the State Director for a (very) senior United States Senator. That fancy title, he told me, means that he serves as the Senator’s Chief of Staff for in-state affairs. As such, he takes calls from people within our state who need assistance. “When your back is against the wall and you need help, you call your Senator,” he said. “It’s my office that you call.” I pictured US citizens wrongly imprisoned in other countries calling home and begging someone to call their Senator for help. Made perfect sense. But that wasn’t what he was getting at.
He went on to tell me that he has become increasingly aware of the autism epidemic over the past couple of years. “It’s hard to miss,” he said. Indeed. He told me that it’s struck him both from a public perspective and a very personal one, as a close friend’s child was diagnosed not long ago and he watched the family begin to navigate the rocky road toward getting him the help that he needed.
He said, “The thing is, Jess, as much as I know that there are thousands upon thousands of families in our state trying desperately to cope with challenges of autism, I don’t hear from them.”
I laughed. Sort of maniacally. Definitely too loudly for anyone’s comfort. He asked what was funny.
“Oh, darlin,” I said, trying to catch my breath. (I turn into a Southern diner waitress sometimes; don’t ask.) “I just can’t say that I’d ever think to call my Senator. I mean, there’s a reason you don’t hear from us. We don’t have the TIME to call you!”
I tried to compose myself. I explained that there are political advocacy groups out there for whom we do our best to raise awareness and funds and then who we trust to call our Senators for us. I told him about Autism Votes and their tireless work on legislation like the Combating Autism Reauthorization Act , the ABLE Accounts Act and their state by state efforts to enact Autism Insurance Reform.
That wasn’t what he meant.
“I get that,” he said, “but well, I guess my mission has become to understand what it is that families need EVERY DAY. I want to know how my office can help in the EVERY DAY challenges of raising a child with autism. I know that we CAN. I just need some help figuring out HOW.”
to be continued ..