how – part one


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,ย 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 , theย 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 ..

29 thoughts on “how – part one

  1. and my hope is that you gave him the phone numbers of all your autism mama friends, cause that would be the only way to find out…..I know I know, stay tuned…….DOAM your killing us:)

  2. Oh my gosh–did you tell him to come out her and take a peek and see how desperatley and quickly we read, post, put out fires, struggle and gain comfort and support….and that’s all before coffee?
    Better yet, you should have him come over for a day…

    On a serious note–kudo’s for him seeking you out (and you
    accepting) and trying to wrap his brain around this very big, very real issue.

  3. Get me the number of a moving company in that state. Get me a newspaper so I can peruse the rentals. I wanna move where the government gives a, um, er, HOOT.

  4. maybe i should give him a ring and tell him about how parents are not only dealing with losing the shirts off their backs to pay for private therapies cause the town ones are usually not worth much and battling school systems (even the good ones) cause the administration can’t tell their toe from their ass, and that parents have to fight constantly and their children still get left behind.

  5. Ooh baby I like where this story is going. I really, REALLY like it and now my mind is spinning with the possibility of it all . . . waiting with patience in Connecticut . . . XO

  6. Well, he found the right person to talk to….. if anyone can educate him on what our families need I KNOW you can!! You Go Jess!!

  7. I’m in the ring with ya sister. I won’t stop talking until there isn’t a breath left in my body. But I’m only one person. I know it’s hard and there’s no time, but voices en masse are important because otherwise legislators think everything is just fine. And it’s not. But this is the way things happen. You’re out there with your life and people WANT to help if we tell them how to do so. Keep on keeping on sister.

  8. Wow!

    Actually, I did have to go to a stste senator’s office on behalf of my daughter and granddaughter early on in our journey. We got some help. Some. gail

  9. It’s not always what you know, but who you know. In this case it seems to be both. Best wishes in educating that individual and we pray advocate! DC (and the rest of the world) needs this sort of help in getting the world educated, funded, etc. (But no pressure…really.)

  10. How beautiful that he wants to know. I am wondering what I would possibly tell him if he asked me? Really…what kind of policy changes would make a difference in the lives of our kids? Autism awareness and education (i.e. sensitivity training) for the public? Access to free, truly trained aides so our kids can access community activities? (My community “has” this but it doesn’t really work as far as I can tell. Hmmm…will have to think more about this. Thank you, as always, for your wonderful blog. I take the time to read very few things but your blog tops the list. xo

  11. I’m surprised that he doesn’t hear from more autism parents. In SC we have to write letters, call, and visit our legislatures every year so we can PLEAD and BEG them to not cut vital services for our children and adults with autism and other special needs. Of course, our state has had budget issues the last couple of years to that may be why, but that still surprises me.

    • oh, don’t be fooled … we’ve got an awful lot of that around these parts too – wasn’t long ago that we were packing the state house for the insurance reform hearings and the state budget, like so many others in this environment (all others??) is an unmitigated DISASTER.

      but my friend’s job is with one of our two US senators, so although there may be some political sway from the federal players to the state, he operates on a different plane than the people that we usually appeal to in the state government.

      did that make sense? even a little? (i’m exhausted).

  12. I really enjoyed your post today.First let me tell you are a wonderful writer and I really enjoy reading your blog. You have an amazing gift with words! I just wrote a piece on my blog that I think might be able to help the senator and their staff be begin to put their arms around the needs of children with autism and the needs of their families. I wrote a piece about my son getting his hair cut. You can see if by going to….I think every family with autism needs a Shannon(this will make sense when you read the post) in their life. Thank you for sharing your journey…..peace….

  13. This was all meant to be… Connections like this don’t just happen.

    Thank you for taking time to reconnect and then educate. Can’t wait to see what lies ahead. Go you!

  14. Congats Jess! What a great opportunity, and you are just the person to take the bull by the horns! This is fate at it’s best. I am so happy for you, because you must be excited. But most of all, I am happy for ALL the families of children on the spectrum, because this will help all ๐Ÿ™‚

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