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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A Journey of a Thousand Miles

by Tim on November 29, 2011

“A journey of a thousand miles begins with a single step.” – Lao-Tzu

Today I achieved something momentous, and I almost missed it. I completed my 1,000th mile since I decided to start running again and taking control of my health in August 2010. I’ve run well over 800 of those miles in 2011, including a marathon in March. Just to give you some idea, a thousand miles is approximately the distance from New York City to Daytona Beach, Florida, and farther than the distance between New York City and St. Louis, Missouri. To which I thought to myself, Holy crap! I can’t believe I did that!

A thousand is certainly a nice round number, but in light of Lao-Tzu’s quote, it means something more to me. Today I completed a circle, and now I get to start a new one.

With over a year’s worth of perspective, I better comprehend what a deep mess I was in last year. You can read all about The Great Burnout, but the short of it is that I was physically and emotionally exhausted and in trouble. It was a real low point in my life. It was either do something or fall apart. I am obviously glad of the choice I made. Little did I know where it all would lead.

I remember very well that August day last year, a couple of days before our wedding anniversary as a matter of fact. I laced up a clunky pair of running shoes, strapped on my iPod, and headed out the door for Week 1, Day 1 of the Couch-to-5K program. It primarily involved a walking warm up, alternating 60 seconds of running with 90 seconds of walking for 20 minutes, a walking cool down, and beaching myself on the couch after the effort. I felt like I weighed every bit of the almost 235 pounds I was then. I plodded along slowly and completed the workout in one piece. It was a manageable effort, and I felt satisfied. I had started, and that, it turns out, was the first step on an amazing journey.

The workouts got much harder. All I wanted to do was complete the 5K autism run that October with a goal of finishing in under 30 minutes. My knees started killing me. I fell back into a despair. But I knew I couldn’t quit. Much more than a 5K was on the line. I was on the line. I told my body I was taking a few days off, but then it was on, regardless of the pain. I don’t normally recommend running in that much pain, but my situation called for desperate action. I pushed through it, completed my training, and eventually finished that 5K in 28:52, with a knee that looked rather like a large grapefruit. I didn’t care. I felt like I was coming back for good.

One thing led to another. My runs got longer. Then one day while on a long run, in a fit of pique, inspiration, or sheer insanity – or all of the above – I decided to set the biggest goal I’d ever thought about going after. I decided to complete a marathon three months from that day. This past March, eight-and-a-half months after I started running again, I crossed the finish line and completed my first marathon.

It is true what they say. The finish line of your first marathon is a transition line for your entire life. You cross over, and your life is never the same again. And it hasn’t been. It showed me that if you keep taking one step after another, anything is possible.

That’s what the J-Man first taught me. His life and growth are a series of steps – some small, some enormous leaps – each hard-won. No particular one may be all that glamourous or noteworthy all by itself, but when slowly but surely added together, they create magic. This is one of the wows of autism. And for me personally, I’ve discovered this is one of the wows of life itself.

I have tried to apply what our J-Man has taught me to my health and fitness, to my work, and to my life. It’s working. I think I get it now. I may be a slow learner, but I have an excellent teacher.

I feel more confident in adding new and harder running goals, working to get our lives in better order, and growing my work and hopefully my income, too. I feel like I have some idea what the heck I’m doing now. Our J-Man showed me the way to believe again.

There’s no magic plan here for you to follow. There’s no checklist to fill out and work through. It’s not quick or easy. You can’t make an infomercial out of it. You most likely won’t get results any time soon, but you will get them. You just decide what your heart wants most, and you go get it. You go outside your proverbial or literal front door, you take a step, then another, and you don’t quit until you get there. There will be setbacks and detours, you will often doubt whether you can do it, but if you keep your eyes on the goal and never quit, you will get there.

I made that journey of a thousand miles. It taught me enough lessons to fill a book. And now I get to begin another journey. Where it will take me next will be beyond anything I can yet imagine. I know it. So today I take that next, single step.

So go take your step. Don’t wait for anything. Right now. Go.

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After So Long, I Believe It Now

by Tim on November 21, 2011

Speak your mind — even if your voice shakes. – Maggie Kuhn

Our J-Man is starting to string syllables together. Not many, but he’s doing it. He’s slowly but surely doing it without prompting. It rarely exceeds three or four halting words, but he’s doing it.

This feels like our version of the moon landing.

After so long doubting that he would ever really talk, as I was pulling into the driveway the other morning, for the first time something struck me. I started crying in the car. I believe it now. I really believe it. He’s going to talk, and he’s going to tell us about wonders we never imagined possible.

Even if he never did talk, would it change how dear he is to me, how much I love him, how much I will cheer for him, how much I will fight for him, how awesome he is and will be? Not one bit.

But I see how hard he works at trying to communicate verbally. I see him get so frustrated and upset at being unable to get his point across. I want to know how he feels, what he thinks about, how he sees the world. I want desperately to find some way to unlock his voice. I don’t care if that’s via his voice box, an iPad, or something else. But I feel him trying to show us how much he wants to figure out how to use his own voice. The more Dale Jr. talks, the more amazing things I realize he has to say. And I feel more like a failure as a parent that I haven’t found a way to help our J-Man do the same.

Recently he has been scripting some. He’s stringing together sounds, syllables, and approximations to repeat things he hears, often from kids’ shows he likes such as the “Here’s the Mail” song in Blue’s Clues and the intro song to Pinky Dinky Doo. These are motivators for him, and we are all about those especially since so little historically has been a strong motivator for him. They are familiar, they give him something to focus on, he can use them to practice sounds, and most of all, they make him happy.

I know we all have kids spanning the entire communication spectrum, so to be clear, he’s not suddenly uttering these crystal clear sentences. Some words are shortened – some to the point they sound like rapid, breathless speech. Some of his syllables vary greatly in length and use stresses you aren’t used to hearing. His inflections at the end of words may be all over the place, though they sound almost melodic. But you know, it doesn’t matter how he does it because there’s no one ‘right’ way. This is the purest music to us.

We were talking with his speech therapist recently, and we were all rejoicing that he’s started experimenting with these inflections and different intonations. He’s trying to close off words and say all the sounds in the word, not just the first syllable or two. He works so hard to get it all out, and now he’s staying with it longer and trying to finish the words he starts. He’s known for his clipped, monotone syllables when he does speak. He’s creating his own verse now with rhythm, tone, and meter all his own, and he continues to experiment and improvise.

What he’s doing now sounds like jazz. No, it is jazz.

He experiments with the notes. He is unbound by the stress and unstress of our so-called speaking. He is finding his own way. He is making it up and discovering it as he goes along. We can’t make his mouth, tongue, throat, and lungs make the sounds. He is the musician here. We can try everything we can think of, but so much of this is his journey of discovery. And he’s doing it.

His syllables sway and dance haltingly like middle schoolers at their first dance. He takes verbal steps slowly, carefully, daringly like a toddler, but he keeps at it, laying out one syllable after another. He lines them up like whirling dervishes, dreamy sloths, or slippery snakes, not going where he wants them to yet, but indeed they are going somewhere exciting.

And like a crossword, enough clues are now filling in that it seems bit by bit to be getting easier for him. Eventually there’s a tipping point where the momentum shifts in your favor. Maybe, just maybe, we’re finally there. Slowly but inexorably, it’s happening.

He sees everything around him, feels entire constellations of emotions, has wants and needs, has opinions and ideas, and has untold riches to share with the world. He may experience some or all of these things very differently than most of the rest of us, but that’s what so wonderful about it. What he sees and feels and thinks is unique in all the universe. I want him to be able to share that with whomever he wishes to.

And now these little rays of sunshine are poking through. It’s going to happen.

I see his face beam when he does get the words out. The light bursts forth from every pore in his face. I see his whole body rejoice when he is heard and understood. If there is anything that makes my heart sing more than seeing this in one of our children, I don’t know what it is.

And most of all I see it in his eyes. He now believes it, too. It’s going to happen.

I want this as much as anything. I want him to believe in himself. I want him to know that he can find a way to do whatever he seeks to do, no matter how long it takes. Forget however long it takes anybody else. I want him to know that doesn’t matter. This is his journey of exploration and discovery. He may have to take paths less travelled, or ones not travelled at all. He can blaze his own trail through sheer force of will. There’s magic out there to be found.

I remember all the days trying to get more than ‘kuh’ out of him (the sound that once meant anything and everything). It took months of work day in and day out to get just one new sound. I remember having no idea how he’d ever find ways to communicate and how we’d ever be able to help him tell us what he wants, needs, and thinks.

But slowly and surely over these years, it’s happened. One syllable at a time, he has pulled himself up this Super Everest. I’m still not sure how all this will turn out, but he’s made a believer out of me. He has that effect on everyone.

After so long, I believe it now. And we get to spend the rest of our lives discovering everything he has to say. How amazing is that?

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Review of Pajaggle – A Puzzle Game With Many Possibilities

November 18, 2011

I was asked by Help! S-O-S for Parents to be part of a team to review Pajaggle, a new game for ages 3 up. To access all reviews, please visit Pajaggle: A Blogger Review. My review follows below. Their web site describes it as “Pajaggle™ (pa-jag-gul). The game that thinks it’s a puzzle.” And at […]

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Letter to a Struggling Parent

November 15, 2011

To my friend and fellow wanderer in this wilderness, I wanted to write you this letter because I know you’ve been clinging to the end of your rope, digging your fingernails into jagged holds until they break and bleed, desperate to not fall. I know you’re so damn tired you can hardly stand anymore. I […]

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