A slightly shorter version of this piece appeared in the April 2013 newsletter of the Autism Society of Wisconsin for Autism Awareness Month, and just ahead of my appearance at their annual leadership conference, where I led a workshop on Organizational Development.   Written for an audience of  individuals, family members, and professionals who are in some way connected to autism, and encouraging them to “get involved” with their local non-profit autism group or other disability community organization.  It also applies more broadly to getting involved in ANY worthy cause.  

I believe in what I wrote.  I believe in it wholeheartedly.   Because I believe that stepping up and making a difference in this world in whatever way you can by giving of yourself is a vital part of what it means to truly live.   – jms

“We have a spot opening up on our Board of Directors,” she said, “and we think you would be a great addition.  Would you have any interest in serving on the board?”    The question came as a surprise to me, as I’d never served on a Board of Directors, and wasn’t even sure what the job entailed.   I’d been serving as the volunteer webmaster of our local Autism Society in Tennessee since very shortly after my son Evan had been diagnosed with autism.  Marcy, the woman who asked me that question was, in addition to being a board member, one of the therapists working with our son.  My wife and I were regulars at the monthly workshops and had made a number of friends in the organization by attending a few support group meetings and a “Family Fun Day” picnic.   In those workshops and fun events, one thing I learned from the beginning was how much I really enjoyed getting to know our local “autism families” and their kids.  I’d come to view this group as a trusted source of information and experience-based wisdom about “Autism”.  Information that was helping my wife and I to be better parents to Evan, who was then not yet three years old.   But the idea of serving in a more formal leadership role hadn’t really been on my radar screen.   I wasn’t  sure about that “great addition” part at all.

Still, I pondered the question, took a deep breath and said “Yes”.

I remember thinking at my first couple of board meetings, “I have no idea what I’m doing here.”  But, because of my work with the website, and because I was a voracious reader of every book on autism I could get my hands on… especially those compelling first-person narratives written by parents …. I became chair of the “I&R Committee” soon after joining the board.

Eventually, I became Board President, a position I held for six years, eventually term limiting out.  Didn’t know for sure what I was doing, but I learned to trust my instincts for heart and authenticity.    I also became a regular contributor to our organization’s bi-monthly newsletter, writing a “President’s Corner” column about our experiences with Evan, his twin brother, and their older sister.  I loved writing those columns, and the challenge of coming up with something that was both personal, and yet somehow universal, was a joy for me with each new issue.   After I stepped down as president, I continued to serve as “Immediate Past President” … sort of the “elder statesman” on the board.  Cast in the role of  (I hope) bringing the perspective of experience to our meetings.     I’m not currently on our local autism organization’s board, and I haven’t written for them or worked on the website for years.  But I am still quite involved, serving as their representative on a state-wide Autism Summit Team, and also in a number of other similar capacities.

And I still LOVE to meet new families, talk with them, and get to know their kids.  It’s hard for me to believe I’ve been on this journey now going on sixteen years.

I remember one conversation I had back in those early days with Laura, who was then the organization’s Executive Director.  Laura was the one who’d recruited me (in our very first face-to-face meeting) to work on the website.  As a parent herself, Laura cared deeply about our families in the Middle Tennessee Autism Community.  With the help of a few dedicated “autism moms”,  she had created our local organization out of the scant remnants  of a former group, and had begun to grow it into a local force for change.   But on this day, she’d had a particularly hard day, fielding phone calls from a couple of parents whose children had just been diagnosed,  parents who were still needing to “process” it all, and to come to an understanding of this “autism” thing that had entered their lives.  She’d had a call from an emotional and angry mom who was desperate to find someone to attend an IEP meeting with her to help advocate for better school services for her child. And another from a mom with a child with a brand-new autism diagnosis, who (as often happens) ended up crying on the other end of the line, quite emotional out of fear, frustration.  This raw emotion is a natural part of the grieving that we all do when confronted with such life-altering news …. but “being there” over and over and over for folks who have such profound needs is wearing.  Laura dutifully had spoken with each and every one of these folks, because that’s what she did.   But it also meant that all those things she had PLANNED to accomplish that day (grant writing, working on workshop presentations, etc.) had to be put on the back burner, and some of them had deadlines.

Laura, a little frustrated,  told me, “Damn it, we can’t be the compassionate shoulder for every family in Middle Tennessee with a kid with autism!” I looked at her and said, “No, probably not. But sometimes we’re all they’ve got.  So I think we to try be there for them as best we can, and especially in that moment when they need us most.  The need to do that probably trumps just about everything else we do.  And then we have to help them learn to find one another.   Then to support one another. Because THEY  can support each other far better than we ever will. We have to connect them with more experienced parents and trusted professionals who can help them on their journey. Yes, I know … it’s a frustrating job sometimes.   Maybe MOST times.  But if not us, then who’s going to do it?”

And I told her that though I knew she  didn’t have any need to hear this from me,  I found her example to be inspiring and profoundly moving.

Here’s what I’ve come to know.   For families affected by autism and other disabilities, positive changes come most often as a result of family-to-family, person-to-person local connection and through the passion and dedication of local volunteers, local organizations, and local professionals.

Though “the work”  can often be frustrating and sap our energies, we also know that it is incredibly, amazingly, and unexpectedly fulfilling.  And what we know in our heart of hearts beyond any doubt whatsoever is that the best organizations, whether small or large, don’t measure success by how much money they raise.  Nor by how many “members” they have, how many conferences they organize, work-groups or task-forces they are appointed to, or how many “position papers” they author.  It’s not measured by how much research they fund, how many legislative initiatives they support, how many walks they organize, or by how often they’re in the media.  Those things ARE a part of the work, and I’m proud that our local organization has been involved in all these arenas.

But they’re not THE work.  They’re not WHY we exist or how we measure our success.

We know that success can ONLY be counted by how many lives you see changed as a result of the caring communities you create.    And truly changed lives ALWAYS and by necessity come about one at a time.

There is certainly a need for and a valid purpose for the large national autism advocacy organizations, and others in the broader disability community.  We all applaud the grand dreams of those groups for sweeping systems change and share the vision that such big changes may someday become reality for our loved ones.

We joyfully join them in advocating for those same things here in Tennessee.  But the biggest “hidden secret” in the autism world lies in the day-to-day work of one-on-one support, education, and advocacy that goes on in local communities every day across the country, and around the world.  It lies in the knowing glances and smiles we share with one another as we acknowledge how amazing the kids and adults we serve really are.

It lies in the paradox that while we grieve the challenges our kids face, we also celebrate with joy the good things they bring us.   It lies in the strength we give one another through mutual support, shared wisdom, and yes…. compassionate shoulders.

It lies in the heart and soul of local disability organizations and the dedicated, knowledgeable, and tender-hearted people who do “the work,” quietly and powerfully helping to change the life of one individual and one family at a time.  When they share their stories with you, and you share yours with them, it’s a sacred trust, not to be taken lightly.

Our responsibility is to honor that trust, first by loving the people you encounter in “the work” as completely and genuinely as possible.  And then, we further honor that trust by using those stories to bring about even more changed lives.

THAT is the work that matters.

In the ensuing years since I gave that first uncertain “Yes” to Marcy’s question, I’ve served on the boards of numerous non-profit organizations at the national, state, and local levels.  In looking back on that work, I’m not entirely certain what it is that I’ve brought to the table, except maybe a relentless drive to keep folks focused on the big picture:   The importance of heart and passion and authenticity in helping to see lives changed for the better.

In terms of that service, I know that  I’ve not always gotten it right, and sometimes I’ve said yes too quickly.  But the idea of genuine connection, of sharing time and love in ordinary moments in seemingly small and inconsequential ways,  that idea has never failed me.

Above all, I know this one thing to be true:   If you want to impact YOUR community, it’s going to come from the hard work and dedication of local folks just like you.   Get involved.  Volunteer.  Worthy non profit organizations abound in the disability community right in your town, who could surely use people with a passion for their cause.   You don’t have to be a board member or the president.  Maybe your strength is helping organize events.  Or talking to new families.  Or helping someone strategize for an IEP meeting.  Maybe it’s simply sitting at table and signing people in for a workshop or handing out information packets at a community fair.

Maybe your calling  lies in being that voice on the other end of the phone when someone new to your community just needs to talk.   Whatever your passion or your particular strength, just volunteer, even if you’re not sure WHAT you have to contribute.

However, fair warning:   Don’t be surprised when you find that giving of yourself in this way will also change YOUR life forever for the better.

I had no idea of that truth back then.  But because I’ve seen it over and over, I now know it is true.

I know it because it has changed mine.

We are not here to see through each other.  We are here to see each other through.

love,
John

p.s.  If you’re involved with a group that works to better the lives of any of our most vulnerable folks (whatever that means to you) or their communities, I’d love to hear about it!   Especially about how it’s changed your own life.  It doesn’t matter if it’s the disability community or some other arena entirely.   Email me at john@theverystuff.com, or just post your story as a comment here.