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April 8, 2014

“Out beyond ideas of wrongdoing
and rightdoing there is a field.
I’ll meet you there.

When the soul lies down in that grass
the world is too full to talk about.”
― Rumi

It’s April. When our family first started down this path, April felt momentous. It felt like this amazing community of people coming together quietly, sharing stories, sharing support, just sharing….. It felt innocent….

Now it feels loud. It feels angry. It feels like groups of parents fighting against groups of autistic adults. It feels like there is absolutely nothing anyone can do or say that won’t piss off someone.

Large companies like Panera Bread and Chili’s Restaurants are confused on how best to show their support. They want to do something to mark the month, to help the folks who need it. So they pick a charity, and suddenly folks start screaming from within the community – that is the wrong charity. So they pick another…. More folks start yelling…. So they give up (I mean, really, at this point, wouldn’t you?) and even more people start yelling and boycotting. You just can’t win with this community.

I think we’ve forgotten. I think we’ve forgotten who this is supposed to be about. We’re so busy being insulted, we’ve forgotten. We were supposed to be spreading awareness and acceptance for our children and the autistic adult community they will someday join. We’ve forgotten to listen to them, to the people who get it in ways that we just can’t.

And most importantly we’ve forgotten that we should be building each other up, instead of tearing each other down. So much progress has been made in terms of better understanding, better supports, better advocacy, more community, and more acceptance of differences. But it will all stop if our community can’t stop fighting against each other. We will never get what our children and friends need if we continue down this divisive road.

We’ve forgotten that we should be celebrating instead of fighting. We’ve forgotten the joy. We’ve forgotten to stop and enjoy the dance.

I know there is a lot of hard, but if you spend all of your time focussing on the hard, you’ll miss the incredibly beautiful parts.

You’ll forget to slow down and just be. To just lay in the grass and watch the clouds and rejoice in the trees.



You’ll miss the happy scripts, the joy of her speech as she tells you what your answer to her question will be, and the incredible sparkle in her eyes when you find that connection – because instead of changing her script, you followed it.


And you would miss the ten thousand amazing facts you never thought you’d need or want to know about Wheelhorse tractors. And while you may think you would never care about a Wheelhorse tractor, you would miss the fun (yes, fun!) of planning for and looking forward to the Wheelhorse Tractor Festival next summer, or the countless car cruises and reruns of the British motoring show, Top Gear. And if you missed all of this because you focussed on the hard, you would miss the big thing: his smile and all the joy that comes along with it.


I am tired of the noise. Tired of the anger. I don’t think that’s what April was supposed to be about. We need to stop fighting against each other and try to remember who we were supposed to be fighting for. And that doesn’t come from arguing about vaccines, discounting the voices of autistic adults who have worked so hard to express themselves, or jumping all over a company that was trying so damned hard to support our community and then finally, understandably threw their hands up in frustration. It comes from supporting each other, and more importantly if comes from supporting our children, autistic or not, by slowing down and trying to see things from a different perspective.

Mary watching the water dance at the mall this afternoon.

“It turned out all she could see was the fountain; she’d taken it in and was ready to move on to the next sight.

I hadn’t finished looking at the fountain yet because, to my vision, the fountain was a collection of dancing interlocking patterns that each needed attention.

Though it took me much longer to take in that fountain, I realized that the richness I experienced was so much deeper than most people ever see. I began showing her the textures in the water, the way you could see the individual water drops held in mid air sparkling in the light, the unusual colors blended in the pool .. endless vignettes that to me were huge and visceral and to her were just a fountain.”
~Michael Moon, autistic musician, artist, and author




Maybe we need to be reminded. Slow down. Enjoy them. Stop trying to fix them. Stop fighting about them. Just enjoy them for the gift that they are.


4 Comments leave one →
  1. Joan Minear permalink
    April 8, 2014 4:55 pm

    Amen to that! Thank-you so much for sharing your journeys. You are truly an amazing parent and TALENTED writer. Luv. Joan.

    • April 8, 2014 9:11 pm

      Aww. Thanks Joan. Hopefully we’ll get a chance to see you in a couple weeks! Thanks for following along. 🙂

  2. Life&Ink permalink
    April 9, 2014 12:35 am

    You are absolutely right, right in everything you said. Hey I am an old lady, joined the autism party in 1995, the internet as we know it now just wasn’t and you know what, even though there were moments of desperate loneliness I remain convinced it was easier being more isolated. Yes, maybe we were isolated from some support but there was no “April” and we were definitely isolated from bickering, comparisons, and drama. Even today I remain away from the nonsense. It’s just easier, and quieter and it doesn’t block my view of the fabulousness of the fountain. 🙂 Don’t let the turkeys get you down. Remain part of the positive- you do it so very well!

    • April 9, 2014 1:15 am

      Thanks Charlotte! I am tempted to just unplug from everything lately, at least for April. 😉 And no worries about remaining positive. I have three perfect little reminders of all that is good in the world whenever the cyber wars get too crazy!

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