I love the show Deadliest Catch on Discovery Channel.
I grew up spending summers on Long Beach Island and one of my favorite places was the docks where the fishing boats came in. It was so fascinating watching them unload their catch. I guess that's why I love that show so much, it reminds me of that time and one of my Uncles in particular. Oh how he loves the sea. He would fit perfectly on any of those boats featured in the show. (Language and all....)
I think another reason I'm drawn to that show so much is because of how it reminds me of my own "Life with Autism." Full of suspense and drama. Twists and turns. Ups and downs. It's really kind of a heartbreaking show to watch. The danger is relentless. The work is hard. The hours are long. At times there are more sorrows than joys. There are more failures than successes. You sit there not breathing at times wondering what hazard will befall the crew next - much like I've found myself doing time after time when Brandon has that "look" or that "sound" that indicates a seizure is coming. Like the waves that hammer the crew on deck, you know it's coming, you just don't know when. So you must remain in a constant state of readiness. Holding your breath.
There is no relaxation on their boat.
There is little relaxation in life with autism.
I love the voice of the narrator on that show. He talks about their occupation that is anything but calm, with a calm steadiness that the icy waters of the Bering sea do not hardly know. I'm drawn to his comforting voice because it's the total opposite of my chaotic life with autism. I wish I could master the art of living each day in the calmness with which that narrator speaks. But no, my daily narration is more like the sea -- always churning.
I like to think I see a bit of myself in the crew of those boats. Men who love the sea and who can't be anchored inside or at a desk. They are rough, tough, yet possess a sincerity and transparency about them. What you see is what you get. There is no fake. There are no pretenses. They aren't afraid of hard work and it shows. They are weathered and worn. They work in the most perilous icy waters the Bering Sea has to offer doing the most dangerous job in the world. And it shows. They know honesty and the value of hard work.
And the Bering Sea, Autism, - is hard work.
If you've ever lived through a yeast die-off in your child, you know just how perilous those icy waters can be. If you are a warrior mom of a child with autism, you too are doing the most dangerous job in the world. I love how the narrator described it once, he said in his calm steady voice, "They do the most deadly occupation in the most breathtaking place on earth."
Indeed that describes Life with Autism. Autism is deadly. Death by drowning when they wander off. Death from not understanding danger. Death from seizures. My son has stopped breathing long enough to need CPR once. And long enough to need oxygen twice. Each fall from a seizure could be the last...
Each voyage beyond the safety of Dutch Harbor, could be their last.
Much like the life of a greenhorn on the boat, life with autism is very unforgiving. There is no grace period for new Moms. No mercy is shown even to veteran Moms. There is no training period, there are no manuals. It is merely sink or swim. It is do until you get it done or die trying. There is no lunch break when you're hungry or quitting time when you're tired. There are no promises, apologies, or excuses. Like those fishermen you work hard for up to a week at a time non-stop. You work and you work and then you work some more in setting those pots in hopes that when you swing the boat back around to haul them up, they're full.
But often, they're not.
The life of those fishermen is one where they have learned how to rise above disappointment and to keep working at it for the love of doing it more than the reward of what you get from doing it. That's a hard skill to master in this current world of instant gratification.
And like being a fisherman on Deadliest Catch, so very many aspects of it have been the most breathtaking moments of my life.
When you pull up that string of pots that for hours and hours before have come up empty, and as it's coming up out of the water you stare at it with such anticipation, such hope that this time, maybe this time, there will be Opie's or Blue's --- just a few. Just enough to give you the breath of fresh Hopeism you need to rejuvenate your bone-tired body --- the reassurance that you are on the right track, that you're where you need to be. Once again you find yourself holding your breath as the pot comes up and you see crabs. You can breathe. You can whoop and holler. Then if you're really luck, once the pot is all the way out of the water, you see that it's full of crabs. Keeper crabs. Eyes that have seen too much the darkness of disappointment dance in the light of a new skill mastered. A new understanding revealed. A new level of healing achieved.
That is the breathtaking moment those fishermen live for.
That is the breathtaking moment I live for.
Those moments are there for the taking for those brave enough to hope for them.
Believe in them.
I think I love that show and the real-life fishermen who do that work because they symbolize what hard work is. On those boats, in life with autism, there is no participation reward. There is no prize for simply being on that crew and showing up. Sometimes, there's not even a paycheck at the end of the day. No, sometimes the only reward they get, we get, is that we survived all the sea threw at us. We dodged its bullets and we beat its death. It's knowing that their best days, our best days, are worse than most typical people's bad days. There is pride in that. Bragging rights in that...
I type that and have to smile and shake my head in wonder why they do it. How we do. Yet they do. We do. I do. Each year that Jennifer Crawford and I put on our Autism Conference and Resource Fair; by the time the last person left at the end of the day we would look at each other and swear that would be the last one. Yet much like those fishermen, as each new season beckoned, we found ourselves drawn to the dock ready to fish. Ready to face those perilous seas of planning again. Ready to face whatever fate would befall us -- success or failure.
I think that's what keeps me coming back to the Hopeism of autism as well.
Just how rewarding its successes can be.
Like the ebb and flow of the tide, I know that autism will bring me both good and bad. Successes and failures. Triumphs and tragedies. It will test me like no other test before, and if I can daily survive that test I will be among a brotherhood of a very select few who will have my back for life. Who understand this kind of life.
Those are the only certain things in this sea of uncertainty that is autism.
A few weeks ago a new season in our "Life with Autism" began as well. I can hear the narrator's voice in my mind as I rejoice each morning with, "As dawn breaks over life with autism we are steaming forward to another seizure-free day. Our 2013 seizure-free season is now underway...."
As I write the manuscript for this new season, I don't know how long it will last or how successful it will be. All I know is that each day as dawn breaks we will do as the picture portrays. We will steam forward into the unknown of autism's uncertain future, into its often icy, perilous waters where there will only be one thought I know to be true:
HOPEISM begins again.
Where I will cling to the One who is even more powerful than the Bering Sea, and who can calm it with but a whisper of His voice.
~ ~ ~
I love that show so much because it's "Life with Autism" -- one of the most extraordinary, empowering, life changing journeys of all.
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