December 2011

A Christmas Story

by Tim on December 25, 2011

Most of our days are filled with a variety of challenges, which often come with a mix of gifts, frustrations, and everything in between. Then there are the rare days when everything coalesces into this unending day of goodness.

Friday turned into this kind of day. It started out with a string of good happenings. Mary made me cookies. I got the stitches in my back out. (Dermatologist… again.) Pathology report was clear this time (previously was very abnormal but thankfully no melanoma). I received – and immediately deposited – a nice-sized check from a client, which will go straight toward Project Pay Off the Credit Cards when it clears. We got a startling amount of holiday and regular life stuff done. I said on Facebook after that, “It’s all gravy from here.”

So it turned out there was a lot more gravy to come.

That evening, out of the blue Santa showed up at the house in the back of a pickup truck. (I kid you not! It’s the South after all.) ‘Mrs. Claus’ and a band of assorted elvish relatives had come to the door with candy. I was getting ready to go for a run, and Mary took Dale Jr. outside to see. The J-Man at first wanted nothing to do with all this, but then I saw him peek out the window and smile at Santa. I knew he wouldn’t walk out there on his own, so I carried him out to the truck to see.

He looked at Santa, then looked at me (In the eyes! Joint attention!) and said, “Santa Claus” and “Ho, ho, ho!” He would alternate between smiling ear to ear and flapping his arms, a clear sign he’s very happy. I even coaxed him into the back of the truck, and he sat sort of next to Santa on the tool box in the truck bed. Mrs. Claus said she’d arrange to get us copies of the pictures of this since we told her we hadn’t been able to get the J-Man to see Santa (the mall = the center of Hell for him).

What they perhaps saw as a simple act of Christmas family fun going door-to-door in our neighborhood really made our day. We only vaguely know them – they live down the street from us somewhere – and they have no knowledge of our kids or our family circumstances. They were simply practicing a not-so-random act of cheer and joy, and in doing so they gave us a wonderful gift. One thing autism has taught me is that goodness and kindness often come burbling up out of the ground when you least expect it.

After they left, I got a great five-mile run in under a crystal clear, star-filled sky in perfect temperatures. I was filled with visions of the J-Man’s face lighting up and his own voice telling me about Santa. (Dale Jr. is still at that age of being rather frightened of him.) I ran without effort. I even found myself laughing.

I’ve been missing my grandmother a lot – she loved Christmas and I loved spending it with her – but I always feel close to her running under the stars. I spent the evening decorating our little “Grandmothers Memorial Tree” on the mantle, listening to Sarah McLachlan, and eating from the mountain of goodies Mary made. I thought of all the Christmases of the years gone by and this wonderful day where people who were essentially strangers brought us joy, a joy our son can now give his own words to.

I understand more each year why my grandmother loved Christmas so much. It’s a time for expecting something magical to happen. It was on Christmas Day in 2004 we told her that we’d be having our first child, and I remember how overjoyed she was for us. I always felt safe, loved, and renewed at her house, especially at Christmas. Now we continue adding on to all these memories.

As time for bed on Christmas Eve approached, Mary read ‘Twas the Night Before Christmas. By the end of the second reading, Dale Jr. had fallen asleep in the living room floor under his blanket. The J-Man was sitting in my lap and drifting off himself.

This is our Christmas present this year, and what wonderful gifts they are.

To all of you – I hope that, however you celebrate them, these days bring kindness, joy, and lasting memories to you and your family.

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The last couple of years I’ve done Three Words instead of New Year’s Resolutions. I’ve found this to be enormously useful, especially when compared to the incredibly low bar set by the complete lack of success we have ever had with our Resolutions. This is the time when I like to review the year and look ahead to the next. But I have very ambitious plans for 2012, and I’d like you to be a part of them.

To give you some idea what this has been about, in 2010, my words were: proclaim, connect, and bamboo. (See more explanation here.) It turned out 2010 was the year of The Great Burnout. The first half was pretty awful; the second half began a personal revolution. It was definitely a tale of two years.

In 2011, my words were: renew, simplify, finish. I feel like I hit 2 for 3 this year. ‘Renew’ was about continuing my work on my personal health and fitness that started after The Great Burnout in Summer 2010. I see this as having been a great success this year. By the time 2011 is over, I will have run close to 900 miles! I’ve maintained my 25-30 pound weight loss, I’m wearing clothes 2-4 sizes smaller than when I started. I feel much better. So, I win!

‘Finish’ has been a mixed bag, but I’m going to give myself the benefit of the doubt and call it a victory because I rocked some first-time, big-time goals this year. I finished my first marathon in March, a lifelong dream and Herculean project considering where I started just eight months before that (i.e., with my fat ass on the couch). I also participated in a collective writing challenge in November in which I wrote 50,394 words in 30 days. (Some of those appeared on this blog. Others will appear later. Even more others are for books I’m working on.) So on these two achievements alone, I’m calling it a success. And I’ve had other, smaller successes along the way. I had wanted to do more, but I’m giving myself credit for some things well done.

Simplify, on the other hand, was a pretty big failure. We had a lot of rough patches this year. The energy required to simplify our lives got swallowed up by health crises and lots of personal things. But this has turned out OK. I am ending this year with a much better idea of what is needed to complete my simplify goal. So, I am carrying that over to 2012.

I made some big changes in my life these past 18 months. I did it by focusing intently on a small number of ambitious goals, committing myself to working on them consistently, and taking things one step at a time. Now I’m really going to up the ante in 2012.

I haven’t decided on my official three words for 2012 yet – I still have two weeks! – but I know it will incorporate ‘simplify’ in with my other goals. I’m still working on how to express all this in the three-words paradigm, but regardless, I am saying that 2012 will be the year we get our crap together.

And I am inviting you to join me in that quest. A radical life change is something a lot of us desperately need.

If there is one barrier standing between us as parents of autistic kids and a sense of being successful at parenting and managing the rest of our lives well, it’s the chaos we experience every day and our present inability to cope with it. We don’t have enough time or money, we are incredibly stressed all the time, we are scalp-deep in fear, our health is terrible, our to-do lists are miles long, our homes are an absolute mess, and we simply don’t think we can survive all the demands on us. Many of us think it’s just not going to get any better. We are already going all out, we are exhausted, and we can’t give any more than we are right now.

The equation we usually operate within seemingly only allows us one variable we can control – the amount of effort we pour into our daily lives. But we hit that point where we either can’t put any more effort in or we reach the conclusion that no matter how much energy we expend, it won’t really make that much difference. And we’re pretty much right. So there’s really only one way to proceed. (Hint: giving up ain’t it.)

Throw the equation out entirely and start over with a whole new way of doing things.

It’s obvious we do have several constraints. Some of this chaos comes from things we cannot really control. However, a lot of it is within our grasp to do something about. The question is, how?

I don’t exactly know yet, but I am challenging the prevailing idea that a life of feeling overloaded and overwhelmed is just how it has to be for us as parents of special needs children.

I’m going to state something I now believe, and I’m going to state it without any proof whatsoever. As a matter of fact, pretty much all logic says it’s likely wrong.

I believe we can triumph over the chaos, be great parents to our kids, and live the kinds of lives that make a difference for our families, our communities, and our world.

And I want to prove this is possible. Like I said, I don’t yet know how to do this. As a matter of fact, I don’t yet know much about how to do it. But I’m going to find out. We’re going to discover the way to achieve this as we go along.

And I want as many of you who want to participate in this experiment to join me. I want us to show the world it can be done.

I’ll post more details about how I plan to set all this up in the very near future along with my initial ideas. One major component of this is that I’m going to blog it all out. I’m going to do this publicly and be held accountable to my goals and progress. I’m going to document what we do in our house and what others participating discover along the way so that at the end we’ll understand what worked and what didn’t so we can all do it year after year. We’re going to learn together and make real, lasting, positive changes in our lives.

This will be a community effort – no membership fees or anything like that. All you’ll need is the commitment to see it through. If you are interested to joining me in The Year of Getting Our Crap Together and making some big life changes next year, e-mail me at tim@bothhandsandaflashlight.com.

Hope everyone’s holidays are going well! More soon.

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In five minutes, you can make a difference in the lives of a lot of families.

Go to the A Diary of a Mom blog, read her post, and act. All you have to do is click and send a message to your Representative in Congress. It’s that simple, but it will make a huge impact.

Military families should have access to autism-related therapies as part of their health care. Imagine being deployed somewhere across the planet and worrying about your child getting the care they need. I get upset just being at the grocery store for an hour worrying about my kids. Now imagine being 10,000 miles away for a year or more. Imagine being moved from place to place every couple of years. I can’t imagine how hard all this is.

But you can do something about it. I’ve already contacted my Representative. It took me five minutes. Take five minutes and join us in this effort.

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Who We Are

by Tim on December 1, 2011

This is your story and mine. This is who we are.

You know fear. No, you know pure terror.

You have discovered unimaginable joys.

You feel everything. Intensely. Completely. There are days your soul catches fire. No emotion is beyond you.

You will always be parenting without a net.

But it can be done. It is being done. Every day.

We are doing it.

We are angry at an unjust world. We get furious that no one else seems to understand or care. We pound the dirt and fling it at the heavens hoping that there is some benevolence out there who will listen.

We balance our lives on the edges of knives. We can pull life itself out of meat grinder with our bare hands. We’d volunteer to have our arms ripped off if it would make our children’s lives better. We walk out into traffic to save them. We die a thousand deaths every time they fall apart. We fight back like caged animals. We are parents protecting our young.

We celebrate achievements large and small with complete abandon. We cry at a single, new word. We rejoice upon a smile. We turn into a puddle with a warm touch. We cheer with the voice of a thousand stadiums. We wear our pride everywhere.

We are fighters. We do not quit. We do not forget. We are relentless. We may end up on the ground, but we get up. Every. Damn. Time. We will not yield. We will not compromise. We will not surrender. Not ever.

Our faith may be shaken, but it will be reborn, however often we have to. Our strength will come from somewhere. It always does.

When we fall over and despair that we will never be able to stand again, we gather ourselves, we push against the ground with all our might, and we make it again to our feet. Getting knocked down isn’t the story. It’s the getting up somehow, no matter what, that matters most.

We believe. We believe in our children. We believe that their future is up to us. We are their champions. We proclaim the wonders of our amazing children, and one by one we convert the world. We speak for our beloved children who cannot yet speak for themselves. Whenever we crumble into silence, the very stones of the earth will cry out on our and their behalf until we can speak again.

I want nothing more than to tell you how this story ends, but I cannot. None of that is written yet. The pages ahead of us are blank. But I do know one thing. We have one hell of a story to tell.

Tell your story. Tell your child’s stories. Bear witness to all the beauty, pain, wonder, adversity, and possibility. Tell them what it’s like to savor each word your child learns to speak aloud. Tell them of every hard-fought step it took to get there. Tell them of the days you are scared mute and you don’t know how you will make it to another sunrise. Tell them what it feels like to rejoice when your child’s face bursts with light when they finally climb over their mountains of challenges and achieve the once impossible. Tell them about your child’s smile. Tell them of your pride.

Tell them everything. Speak of the wonders you have witnessed. Every. Last. One.

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