December 2012

Will Bring Us Goodness and Light

by Tim on December 11, 2012

This past weekend, we went with friends and families from school to see a Christmas lights tour at a local farm. The owners had converted the dirt roads around their farm into a holiday hayride trail decorated with Christmas displays, and they take visitors on a 30-minute, slow, peaceful ride through the woods on a flatbed trailer.

The owners thoughtfully let us come about a half-hour early to avoid the lines. An unusually pleasant December breeze blew in and around us as we waited for the ride to start. They also turned down the loud holiday music for our trailer full of sensory-anxious riders. The J-Man was distressed before we started to move. He didn’t want to sit down. Then we pulled away from the barn, and the motion and vibration instantly calmed him.

It’s dark out there in the country, which made the light displays that much more vibrant. Dale Jr. was beside himself with glee as each set of lights burst into every Christmas shape, figure, and character you could imagine. The J-Man sat there, body still and close to my arm, eyes looking around, taking it all in. The two of them sat between Mary and me, the four of us soaking in this holiday moment together.

Dale Jr. narrated each amazing thing he saw, which was everything. Each new moment was a revelation to him. I felt the J-Man’s body relax into the right side of mine. His passive, inscrutable face began to brighten. That twinkle we know and love as much as life itself appeared in his eyes. His mouth went from grin to smile, that perfect smile that makes him look like Mary’s little twin.

We rode on through the night surrounded by thousands of lights, our children’s faces filled each with their own unique wonder. Mary and I met each other’s eyes and knew without ever saying a word. That moment was pure magic, a moment you wait and hope for. The four of us together awash in the joy and peace that truly represent what the holidays are all about.

We are surrounded by friends – children and families from the autism program at our school. Everybody has their own needs and challenges, but there we were together, out in the wilderness, literally encircled by light. And I think, there is no more perfect symbol for our lives than this.

I thought about how challenging public outings have been for us over the years, sometimes completely impossible. Going out as a family has been painfully hard at times with two kids with very different personalities and needs. I thought about how much we’ve practiced all the skills and strategies. To the unknowing observer, we looked like any other family enjoying the lights and each other. Deep down we knew that this Christmas gift was years in the making, coming through faithfully working and waiting, attending to what is important, and believing in all the goodness that comes into our world just because of who we are together.

Family pic with santa 2012 sm The hayride ended, we got off, and we went in search of Santa. We hadn’t had a successful, formal Santa picture in years. We honestly stopped trying. We’ve seen no need to stress our J-Man out at our mall over a picture. But a very understanding Santa was there in a large sleigh (no crowding or needing to be too close). J-Man cautiously climbed in at Santa’s right, Dale Jr. nervously to his left and completely in awe of the mythical figure. Mary and I stood on either side of the sleigh, and the photographer snapped our picture. This would be our first family portrait in over two years.

While we waited on the photo to print, we all sat outside together at a picnic table next to a roaring fire. For a minute, no one made a sound, not even the normally chatty Dale Jr. We just stared into the fire as its light danced and flickered up to the heavens.

Before we left, the J-Man and I walked over to a light display.

“Did you like the lights?”

Grinning he says affirmatively, “Yites!”

I see a sign, point to it, and say, “Do you know what that says?”


And so much more. One we will always remember, this time of peace and joy and light.

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[This is a section from my book, I Am An Autism Parent, that I wanted to share with you here. You can download it for free by signing up at the bottom of this post or by going to the I Am An Autism Parent web site and signing up there. Thanks!]

“Dum spiro, spero.– While I breathe, I hope.” – Cicero

I have been asked numerous times by parents just receiving a diagnosis for their child whether there is hope, hope for something specific in their child’s future.

Is there hope she will grow with enough therapy and school to be considered no longer on the autism spectrum? Is there hope he will be in a classroom with his peers when he gets older? Will she be able to live on her own when she gets older? Will he go to college and someday have a job, get married, and have a family?

I Am An Autism Parent - CoverAll of these questions are so poignant. I remember well the frightened place they peek out from behind. It’s almost impossible when your child is this young to have any perspective on the future at all. At age 2 or 3 or at any time really, you don’t know what they’ll be doing a week from now let alone years down the road.

But you want to know. You desperately want to know. You want anyone to tell you it will be OK. You don’t care if they are lying to you. You want your child to have a bright future, but you can’t yet conceive of what that might look like with autism. So you despair.

To be honest, a part of us always remains there. Our questions about hope do change, our perspectives evolve about what hope is, but our commitment to helping our children grow into the fullest expressions of themselves never changes.

We are ingrained with all the traditional stories of growing from childhood to adulthood. There are endless stories about ‘normal’ childhood filled with all the typical things kids do. But there are hardly any stories about our kids, and that scares us. We feel like we’re flying blind into the unknown.

The stories we do hear about autism are all the dramatic ones in the news, features, and documentaries. After all, documentaries are only done about people who fall well outside what has been declared ‘the norm’. No one does a film about Saturday afternoon t-ball games or a trip to the store.

We live in a sort of ongoing documentary. We are real reality. No one has or can write the story that will come next.

But this is the hope we think we want. We want to know how this story is going to turn out. We want to know that our kids will get the happy ending. It’s what all parents want, it’s just that most parents are making their way through well-charted waters. We’re just making it up as we go along.

All that unknowing, absence of direction, worry, fear, and complete lack of predictability feels like the opposite of hope. We simply want to know that even if we have to bust our asses to get there, if we do the right things, it will all work out in the end.

But here’s the thing I learned that is now saving me a lot of grief and pain.

Hope isn’t a specific outcome. Hope lives in what is here with you right now.

When hope is no longer tied to a destination, it’s free to become a way of being. It doesn’t have to live in some future you can’t predict or control. It can live right here, right now. It can live in your home and in your family.

What has happened is done. What will happen is as yet unrevealed. Spending too much time and energy worrying about either will not get you anywhere. Trust me.

The future will take care of itself somehow. Who knows whether it’ll be the future you originally wanted or dreamed of. Well, I take that back. It won’t be. It never is, regardless of whether your child is autistic or not. But I have discovered that the future has turned out far deeper, richer, and more meaningful than I could have ever imagined possible.

Focus on loving your child, your pride in them, and what you can do today to help them overcome the challenges in front of them right now. Enjoy your child and how they grow and learn and experience the world.

Believe in your child. Believe in the right now. Believe in your family. Believe in the talented people working with your child. Believe in yourself.

This is where hope lives.

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