Jakobs Journal

Walk Now 2010…Waking Up


Each year, Walk Now for Autism Speaks is a new experience for me. Our walk over the weekend raised over $300,000 and had 8000-10,000 walkers. It was a sea of people. Maybe it was the sheer numbers this year that felt new. Maybe it was the sunshine…not a drop of rain and that was a first. Maybe it was that I wasn’t as involved in the planning this year. Maybe it was because I didn’t cry…much. Maybe it was a little bit of all those things but there was definitely something more. Definitely something new.

I’ve been trying to put my finger on it since the whirlwind began at 6:30am when we arrived at Coney for set-up. Walk Day is a wild experience for those behind the scenes. So much work goes into that day and the members of the committee plot and plan for a year. We’ll be meeting in the next couple weeks to get started on next year’s walk. I never would have imagined how complicated it all is…and what a struggle it is to find sponsors, in-kind donors, media willing to give it the attention it deserves (thank you Q102 for being so awesome), logistics stuff, volunteer stuff and on and on. There’s just so much. Then Walk Day arrives and in a matter of hours it’s all over and we go “what happened?”. And we all look at each other and go, “I think it was ok”.

I really can’t say enough about the people on the walk committee. Passionate, dedicated, loving, committed, crazy. All the things one must be in order to raise a child with Autism. These few nutjobs have just chosen to put their qualities to extra use in planning a day for all families living with Autism. I love them all, a lot.

I love all the families that show up on Walk Day. Standing on that stage and seeing so many kids, so many parents, siblings, grandparents, schools and communities, it’s wonderful to feel all that support. I hope everyone there feels that too. It’s a completely different feeling than when we’re standing in the check-out line at Target. I wish we could create a world where it was like that at every restaurant, grocery store and theme park in the world. We’re working on that. For now, we have Walk Day.

And all of that is great but it’s not new. So what was it? Why was it different?

I think it’s because I’m different. I’m not angry anymore. I’m no longer sad. And I’ve stopped seeing Autism as a tragedy.

It took me awhile to get to this place. It took time, money and a whole lotta effort. But I’m here.

I no longer feel the need to “fight the power” and “force the issue” and scream “look at our children, this is a horrible disorder, somebody fix them”.

I wanted more than anything to stand on that stage and say “Congratulations, you have an Autism diagnosis in your family! You’re in for the ride of your life, you have been given an amazing opportunity and you are one of the lucky ones!”

But I remember…

I do remember what it was like to feel distraught, lost, overwhelmed, angry, frustrated and sad. And if someone would’ve said “congratulations” to me at that point, I woulda clocked ‘em.

It came down to a matter of knowing my audience. And everyone in that audience was at a completely different place in their world of Autism. And as I was getting ready to speak, a light bulb went off for me. I wanted to find the common denominator in all of us. And that was the feeling of “getting it”.

And in that moment, I “got” something new.

So what I think was so new for me this year was really comprehending that this journey through Autism isn’t just about our child growing and changing. It’s about us and everyone around our children changing. And growing and changing is not inevitable, it is a choice.

Just as each child with Autism is unique, so are the parents. And how each parent copes (or celebrates) is different. Some develop an attitude and opinion about Autism and stick with that for their entire lives. Others change their ideas every few months.

Some are victims, some triumph. Some do both.

Some do the diet, supplements, HBOT and other alternative treatments while some put them in school and do no outside therapies. Some continue to vaccinate and medicate while others chelate. So many choices about so many different aspects of the diagnosis.

But no matter where we stand on the “issues” or what we choose to do to help our kids, one thing remains the same. We all know. We all know that we exist in a world that few understand. We all know it ain’t simple. We all know that we love our children. And we all know that we want them to be happy. And we all know that each of us is doing the best that they can.

So I wasn’t angry, I wasn’t sad and I wasn’t feeling that Autism is a tragedy. How could I? If I was really believing, really comprehending and really knowing that everyone at that walk was loving their children and doing the very best that they can no matter what they believed about their child’s diagnosis, I couldn’t.

It’s nice to be letting go of anger and sadness. It’s as if I’ve climbed a few more rungs on the ladder to truly living a life of being nonjudgmental. I realize that it was the judgments that were causing my negative emotions. Awareness of that is huge. And letting go is even huger.

“Autism Awareness” now takes on a new meaning for me thanks to Walk Now for Autism Speaks Cincinnati 2010. And I really dig it. So thank you, Cincinnati for showing up, for donating money and for helping me climb a little bit further up that ladder.