I hadn’t intended to note the passing of Steve Jobs here, however as I thought about it, there are a couple of things that I believe are worth noting for parents and caregivers of children with autism.
Jobs and the creatives at Apple – quite accidentally – gave us an amazing array of new tools to address many of the challenges that come with autism. Single-handedly, Jobs and Apple rendered most of the infinitely-overpriced, clunky communication devices obsolete in two fell swoops with the iPod Touch and the iPad. While many companies who shall remain nameless are still charging $8,000+ for communication devices – which not-so-coincidentally has something to do with the limit of what Medicaid will reimburse for them – they are quickly being sent off into the corner where they belong by iDevices that cost a tenth as much but do significantly more than most of these inferior, price-gouged devices. Apple created the technology that is ushering in the end of that profane nonsense. [end soapbox]
In addition, they have provided us with endlessly extensible, multi-sensory, portable tools for education that are improving the way our children learn. They have given technology to the people, the application developers have jumped at the opportunity, and that has opened up untold possibilities to change the lives of children and their families.
But there’s a more important and personal point I want to make here. So many want to understand why he was such a genius and then figure out how to emulate him. You could copy him right down to the black turtleneck and mannerisms and not succeed at this for reasons I hope should be obvious. You can’t be anyone else; you can only be you. And the goal is to be the best you possible, something Jobs understood from the beginning.
Of the myriad articles about him, a particular one caught my eye because of one sentence. John Gruber at Daring Fireball is one of the most insightful tech bloggers anywhere. In his post in which he shared a particular memory of Steve Jobs, Gruber zeroes in on a specific ability Jobs developed throughout his life that I hadn’t thought about before. He says, “One of Jobs’s many gifts was that he knew what to give a shit about.”
I want to be able to do that. This may be my new life ambition.
Jobs was able to devote himself utterly and completely to what was most important to him because he ignored everything else that wasn’t. He refused to be dragged into trivial things that didn’t advance the ideas and products he was passionate about.
He once said, “The only way to do great work is to love what you do. If you haven’t found it yet, keep looking. Don’t settle.” We may think we have to settle as parents because of the constraints we believe our lives and responsibilities have placed on us, but I refuse to believe that even though I often despair not knowing how to live differently. But it comes back to that phrase I first heard from a beloved mentor of mine many years ago: “Never settle. If you remember nothing else I’ve taught you, remember that.”
Jobs also said, “We’re here to put a dent in the universe. Otherwise why else even be here?” I know you and I feel like many – or most – days we’re just trying to survive the period of time between when we wake up and when we finally get to put our head on something soft again. The difference between my belief that we can somehow live out our vision for our lives and the hard reality of the everyday creates a painful tension we live with each day, but I refuse to surrender the hope that there’s a better way.
His mission statement for life included a combination of “do epic stuff”, “do what you love”, “never settle”, and “leave dents in the universe.” If something didn’t fit in with that, Jobs gave no time or attention to it.
For us as parents of autistic children, this is one of the lessons we most need to learn. Every day, we are crushed by endless little details. By the end of the day, we look back and realize we have no idea what we accomplished that day. And this happens day in and day out. Our lives are buried under massive debris piles of things we want to do but that remain untouched, undone, and deferred until some future we fear may never come. All this does is add to our frustration and depression.
We, too, want to do epic stuff and leave a dent in the universe. We want to do something to change the world – or at least the autistic parts of it – but if you’re like me, you feel like you spend most days just treading water or forestalling your ultimate drowning.
There has to be a better way. There have to be clues about how to change the way we pour ourselves into our daily lives such that we can make a lasting mark on the universe. We often think that if we could just push ourselves harder and do more that would solve the problem. When we are more rational, however, we know better. We’re already pushing ourselves to the brink. We are only given so much energy. We have to decide what we’re going to do with it, and we have to do so with great care.
And this is where I think Jobs’s genius comes in. It’s not like he had some unlimited store of energy. He was finite, and the number of years he had on this earth were less than most of us will have. He just refused to give his precious store of energy to crap that didn’t matter.
I spent half the morning yesterday giving emotional energy to a bureaucratic issue with some paperwork for the J-Man. The solution was simple: sign the damn thing, say whatever else needed to be said, and move on with the day. If other people felt the need to expend a lot of emotional whatever about it, fine. That didn’t need to be my problem, but I made it partly mine. I chewed on it like an old bone. None of that was necessary. I was stewing over it instead of trying to focus on doing something far greater with my life.
And we all do this, all day long. We need to be aware that we do it and then focus on taking steps to stop. Decide every day what the most important thing we want to do that day is, then do it. All this other trivial stuff be damned. If other people want to make some petty thing more than it is, let them. You can’t stop them from doing it, but you don’t have to participate. Jobs gave not a whit about convention, politics, politeness, or social niceties. Your work is to focus on what is most essential to who you are, then be ruthless about it.
Here’s something I’m going to try. List everything you’re stressed about. Then look at each one and ask, If I don’t deal with this right now or at least today, is anyone going to, 1) die, 2) take my house, or 3) suffer irreparable emotional or physical harm? Almost nothing reaches this threshold. Many of these things are simply items you and I need to act on in some way, but not in a way that gives them any more of our emotions or energy than they deserve. Do them as they need to be done, then move on.
Then list what’s most important to you. These can be personal values, goals, projects you want to work on, etc. If you’ve ever created a bucket list, then feel free to incorporate that. I’m thinking more of starting with a list of what’s most important to me in the immediate term, but you certainly will want to develop a longer-horizon view of what’s important, too. Choose some things on the list you really feel drawn to right now, then list a few specific actions you can take to get moving on them. Then start moving.
Stupid things that don’t deserve our stress suck up many times as much energy as is required to actually address them. Worrying about other people’s emotional debris as part of it multiplies the energy sucking manyfold. However, when we are working toward what’s closest to our hearts, our own energy multiplies. Do what we love and make a difference. This should be our ultimate aim in life.
Easier said than done, I know. Believe me, I am a master of not following my own words. This isn’t so much an end but a practice – a call to trying to live a better way – lining up one action after another until something amazing comes to life. Our kids do this every day, learning and developing inch by inch until they reveal something wonderful that was previously hidden from view. They already know how. Now it’s our turn to live it.
I think this will be one of Steve Jobs’s enduring legacies: To become the person we want to be we have to commit, act, devote ourselves to this every day, and never quit on our vision. If we fail on any given day, we fail. We get up, put it behind us, move on, and try again. Eventually, wonders will come to life.
What is your vision for your life? What are you going to do to make it happen? What are you going to do right this very second? Go.
“Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma – which is living with the results of other people’s thinking. Don’t let the noise of other’s opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.” – Steve Jobs (1955-2011)
Posts that hopefully are similar:
- Pre-Game Speech for Parents Just Receiving an Autism Diagnosis
- Be Aware – For Families and Friends
- What Does ‘Strong’ Mean to You?
- Where do parents of autistic kids in Holland go?
- The Many Flavors of Autism Awareness
- Our purpose in life is…
- In Remembrance of My Hero