They’ve been hanging over my head for over a week. The thank you notes that desperately need to be written. But these are not just any thank you notes. These are the kind that demand time and effort and at least a certain amount of art. Because their recipients deserve no less.
Our friends and family
I STILL have not figured out how to properly thank them all for helping us to raise a whopping post-match $30,000 last Sunday for autism research, treatment and family services in my girl’s name.
Our friend ‘Lurch’
The one who took our last-minute challenge (that we would dye Luau’s hair Autism Awareness Blue if I could raise an additional $1,800 by the next morning) and shredded it with an eye-poppingly generous donation.
My hair stylist
No, not just for my fabulous hair (though let’s be honest, my last haircut was pretty dang thank you note worthy), but because she offered to dye Luau’s locks Autism Awareness Blue (If I say it enough times, you think someone would could coin it as a color?) in her hoity-toity Newbury Street salon.
The Presidential advisor who not only included me on his conference call last week just moments before joining the President as he signed into law the Combatting Autism Reauthorization Act (CARA), but who then QUOTED DIARY in the post about the event that he wrote for the WHITE HOUSE BLOG.
I know, right? HUGE (and grammatically correct) thank you note on that one.
And so it was that I had planned to write at least one of these each morning this week, beginning today.
But then something happened.
Something that has taken months to come to fruition.
Something that, thanks to the efforts and generosity of a diverse group of people who came together in a spirit of compassion, changed a family’s life yesterday.
Something that brought me to my knees in gratitude, in awe, in prayer.
I got this on my phone ~
A while back I had the tremendous pleasure of speaking with Tim Welsh, better known to most of the autism community as @TannersDad. Tim is renowned for his deft use of social media, his dedication to raising awareness, bringing the autism community together and getting real help for families in need. My conversation with Tim lit a spark.
We’d been talking about advocacy in its broadest sense – what it meant and how best to secure allies for our cause. Together, we bemoaned the vastness of that cause – the fact that autism is just so overwhelming that many people (or organizations) who might have helped us balk because they don’t know where to start. “It can be tough,’ he said, “for folks to see the impact of their donations. And it’s hard to keep them coming back when they have to have faith that results are happening.”
But it was what he said next that changed my thought process forever.
“That’s why micro-advocacy works. Find one thing that can be done and do it. Find one family that needs help and help them. There are so many who need so much; sometimes all you can do is tackle them one at a time.”
I got off the phone knowing exactly where to start.
Many of you know my dear friend Jeneil who writes about her faith, her family and her beautiful daughters, Rhema and Hope at Autism in a Word. And you also know that Jeneil’s husband, Brandon is a Major in the US Army. If you’ve been around here a while, then you also know that I would give my left arm for these people.
They needed help.
Their beautiful Rhema is preverbal. She doesn’t have words. What she does have is strength, coordination and an insatiable curiosity topped off with a complete lack of any kind of sense of danger. In short, she’s like an adorable little Houdini mixed with Evel Knievel stirred into a whole lot of Curious George.
Despite every possible safety measure, Rhema disappeared from her Mama’s arms time and again. Each time, God delivered her back to where she belonged miraculously unscathed. Jeneil and Brandon lived with the paralyzing fear that the next time would be very, very different.
“While all incidents up to this point have ended in Rhema’s safe return, [we] are obviously gravely concerned for her ongoing safety. First, Rhema does not respond to her name being called. Second, she is incapable of offering any identification should someone find her. Third, she would be helpless to defend herself and would freely go off with anyone intent on abducting her.
Additionally, as it is for so many parents of children with autism, drowning is a very real fear. Rhema loves water, but does not understand its inherent dangers. She cannot swim well enough to stay afloat for long in a pool or at all in the tides of the ocean/open water. If she went missing near water, there would be a very limited time to find her.”
Tim’s words echoed inside my head. “Find one thing that can be done and do it. Find one family that needs help and help them. One at a time.”
I called my friend, Drew.
I think it’s time to tell you a little more about Drew. Actually, I’ve already told you quite a bit, you just don’t know it because I didn’t use his real name. You know him as Cole. But it’s time to out him methinks. I first introduced him on Diary back in February of this year ~
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.”
*That ‘very senior United States Senator’ is Senator John Kerry.
Drew and I met to hammer out a strategy. I gathered feedback to start the conversation, and we agreed that we would begin to work in earnest by bringing small groups of constituents to meet with him. Three or four at a time, we’d talk over an appetizer at a local watering hole, long after his workday should have ended.
I began to plot out the groups – parents, adults on the spectrum, insurance advocates, housing advocates, military families, leaders of grass-roots service organizations, doctors, adult service providers. The list was long, but I knew who had to be in the first group.
Drew had to hear Jeneil’s story. He had to see her face. He had to understand that our military families desperately need our help in so many ways. And he had to understand that while we went to work on the big, huge, complicated, overarching policy stuff, there was something that we could do to help at least one family right now.
“Find one thing that can be done and do it. Find one family that needs help and help them. One at a time.”
He didn’t need a hard sell. From the looks of things, he didn’t need to be sold at all. He got it. He started taking notes – jotting down the connections that needed to be made, the people who would be involved, the support they’d have from his office.
We left dinner that night with a plan.
To be continued ..