I’m standing in the middle of room 344 of the Holiday Inn, Belfast, and I catch a side glimpse of myself in the mirror. And I’m struck. It’s one of those Doppelganger moments. A moment of looking at myself, knowing it’s me, but also knowing it’s someone different.
There are some obvious reasons why I might have done a double-take at my own image. For one, I had recently grown a beard, and wasn’t used to seeing my face this way. Also, I was considerably jetlagged from my transatlantic flight, and could be forgiven for a momentary brain-lapse.
But I think there was something else going on here. It wasn’t just my new facial hair that I was getting used to, it was a shift in my identity.
I was six thousand miles from home, and had just returned from the opening ceremonies of the 2009 World Forum on Early Care and Education in Belfast, Northern Ireland. Six-hundred-fifty delegates from 75 nations had gathered to advance the cause of young children everywhere. I had traveled there to present Autistic-Like: Graham’s Story (my film about my quest to find answers for my special needs son) to a group of education leaders from around the globe. And it was quite a moment for me.
Prior to making the film I’d been a guy in a funk. A young first-time dad overwhelmed with the grief of my son’s diagnosis (first with autism, and later with sensory processing disorder) and stressed-out from the demands of being my son’s best hope of finding the right help.
Just a few years before all that, I was a carefree southern California bachelor, pursuing a film career writing (okay I’ll just say it) stoner comedies. It’s fair to say I was struggling to find a larger sense of purpose in my life.
With the whirlwind of my son’s birth, his diagnosis, our dogged pursuit of intensive therapies, then scrambling around to make a film about our experiences, and then scrambling around to get the film out there, I hadn’t taken a breath long enough to take stock of the changes all this had wrought in me. Maybe that’s why, far from home and over-tired, when I glanced toward the mirror, I half expected to see the old me, the So Cal kid, the hang-loose guy.
But he wasn’t there anymore. In his place was this new, weirdly grown-up bearded guy. A guy whose experience as a dad morphed somehow from getting on the floor to do play therapy with his son, into doing presentations at international education conferences. A dad who had almost accidentally become an advocate. And there it was. This amalgam. The dad-vocate.
Not a dad on a mission (I’m way too Forrest Gump for that), just a guy with a sense of purpose. Someone willing to follow the breadcrumbs that led away from the life I thought I wanted, toward the one that was inviting me to be helpful.
The reason I write all this is that I now realize that my shift is part of a trend that probably began a while ago, maybe forever ago, I don’t know, but seems to be gathering steam.
Most of us know about the famous special needs dads like Joe Montana and Doug Flutie, each of whom started foundations in the wake of their child’s autism diagnosis. And Rodney Peete, the NFL hall-of-famer, who wrote the book Not My Boy! about his journey with his autistic son. And you might be aware of the less famous but previously accomplished dads like movie producer Joe Shestack who founded Cure Autism Now, and Peter Bell, who left a marketing career to run CAN. Or the lesser-known dads like Barry Neil Kaufman, who founded the Son Rise program.
But what I’ve noticed popping up all around me are the everyday dad-vocates. Like Mike Fields of Atlanta, father of a boy with autism, who went back to school to become a Floortime therapist. And Randy Abrams, whose daughter has autism. He founded the Autism Free Zone (www.autismfreezone.com), a sort of ‘craigslist’ for families with special needs children. And Bruce Brownstein, father of a boy on the spectrum. He’s developing a computer-based social skills program. This is just a small sampling of the new wave of dad-vocates -- fathers putting their creativity and professional skills to work on behalf of the larger community of special needs families.
Less overt, but critically important are the countless dads who shoulder the responsibility of earning the five- and even six-figure annual sums for their child’s therapy. These are the committed advocates for one. And they count too.
There has been a lot of talk lately about dads in the special needs world, most of it pointing to the disappointing number of dads who check out of their families in the wake of a diagnosis. We’ve heard high profile moms call-out dads who struggle to accept their child’s condition, lose the battle with their grief, and ultimately divorce their wives. This epidemic within an epidemic is troubling, and not enough is done to address the Dad Crisis specifically. But there’s another story about dads that hasn’t been much talked about. It’s the dads like Randy and Peter who gave themselves over to the experience of being a dad of a special needs child in such a way that it remade their professional lives as well as their personal ones. Guys who took an experience that changed some things, and chose, in its wake, to change everything.
As I prepare to leave Belfast, feeling deeply involved with the efforts all over the world to improve the prognosis for children with special needs, I realize what a gift all of this has been to me. It has given me a way to be a part of something bigger than myself.
When I arrive home, Graham is in the middle of flipping his lid because dinner included penne pasta and not curly pasta, and mom has had her fill. All the romance sucked out of my grand return, I’m reminded not to get ahead of myself: my most important job is here, helping my own family with the little things.
Congrats to you -- it's always refreshing to hear about an involved father advocate.ReplyDelete
I love the term Dad-vocate!!!! LOVE IT. Thanks for sharing from the dad's point of view -- we need more dads willing to communicate like this!ReplyDelete
This is a great story! It's good to see what it looks like from dad's POV. Now I am going to keep my eyes open for your documentary, I would like to see it! Thanks for sharing!ReplyDelete
As the wife of a Dad-vocate, please know that sometimes us wives don't show our true appreciation for the active roles you have taken in your child's life. But let me just say it loud and clear...I feel BLESSED and PROUD to have the one I have by my side through this (sometimes scary) journey. We echo your sentiments about that "change" occuring...and when did that happen??? It is amazing though.ReplyDelete
Your transformation may feel strange while in process, as happens to mothers also;ReplyDelete
we too experience considerable re-visioning. But the world sorely needs more dads like you!
This is really beautiful. These kids are transforming the whole planet, parents first. Good dads should be applauded. Can't wait to see your film.ReplyDelete
Glad to be married to a dad-vocate who has come a long way...from the days when he didn't even agree with the diagnosis of a language delay, to now sitting in IEPs and sometimes making more progress than I can because of his perspective. He is one of those working many hours to fund all the extra expenses and also the biggest fan of my blog...he markets it more than I do, sometimes. Blessings on all the dad-vocates out there, and courage to those who are unsure.ReplyDelete
Loved this and am sharing it with my husband! Thanks for sharing and good luck with the film!ReplyDelete