Inspiration

Steve Jobs and What to Give a $@!+ About

by Tim on October 7, 2011

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)

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Our purpose in life is…

by Tim on November 13, 2010

I think I figured out the meaning of life, but let me at least tell you how I got there.

Thursday night we had our victory celebration at the YMCA. My Operation Orange wrapped up along with all the other fundraising efforts of the 180 volunteers at the Y. Our goal between those of us who were on Team Camp GRACE was to raise $18,000. We had no idea how much we had raised until the last minute. They handed us the total near the end of the event.

It was over $32,000!!

I am so grateful to everyone who donated that I don’t know what to say. A lot of awesome, autistic kids are going to have a great time at camp next year and have opportunities they otherwise would not have had.

Maybe one thanks I can offer is to share a revelation I had on the way home from the celebration Thursday night. It seems so simple; perhaps it’s only revelatory to me. But it was the first time I’d ever seen it this clearly.

At the kick-off event for the fundraiser some weeks ago, they told the story of a girl at one of the YMCA camps. This was a camp where many of the kids come from circumstances where they don’t often get to participate in fun, community activities, do things they dream about, or feel valued and special. One day they had a talent show. They asked this particular young lady what she wanted to do. She said, I want to walk like a model.

So they set up a runaway, surprised her with red carpet and high-energy music, and she walked up and down that carpet like she was queen of the universe. And in that moment, that’s who she transformed into. People stomped, clapped, and cheered for her. You could see it in the picture; she felt cheered for and she felt special.

To me the best surprise at the victory party was not really that we blew away our fundraising goal, as fantastic as that was. It was that they invited that young lady to be there to help announce the final fundraising total for the entire Y ($507,000!!).

They had put down red carpet in the gym where we were having our celebration. They invited her to take her encore for having inspired us over these past few weeks. Music thundered, and we stomped, clapped, and cheered for her. Her joyful spirit filled the room. She nearly blew the roof off the building.

She was everyone we work for, every child we value, every young person we celebrate.

And on the way home, I ran that scene back through my mind several times – the look on her face, the pride in her walk, every part of her held high. And then I got it. I thought, This is the purpose of life.

To cheer for people and help them feel special.

It may not be the only purpose in life, but if it were, I think that would be quite enough. The best of what we seek to do in life – supporting, advocacy, teaching, promoting justice, empathy, learning, organizing, volunteering, writing, blogging, speaking, consoling, exhorting, building community, everything – arises naturally from it.

It’s one of the most basic things we all want. It’s a fundamental part of our humanity. Often all we need is for someone to cheer us on and tell us and show us that we are special. From there, each of us can do wonders.

So let’s go practice this. Check everything we do against this idea. Go seek ways to live this out.

Thank you to everyone who supported Camp GRACE! Because of you, we’ll be cheering for a lot of amazing kids next year who are special beyond words.

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In Remembrance of My Hero

by Tim on September 23, 2010

As long-time readers may remember, my grandmother passed away this year on Valentine’s Day after a long fight against ovarian cancer. The loss we’ve felt as a family is nearly impossible to describe. Not a day goes by that I don’t think about her. I miss her so much I can hardly type this.

Today would have been her 92nd birthday. I think it should now be declared a national holiday. I know she would have told me to honor her not by making such a fuss on a blog but by living a good life, fighting for my family above all else, helping others every chance I can, and being true to who I am. I’d add to that kicking as much butt in life as possible.

This year has been hard. There have been many weeks where it’s just been grinding things out. While I started the year with many goals of diving headlong into the autism world and making a difference not just at home but everywhere else I could, it hasn’t really worked out the way I’d hoped. My efforts for this year have turned more toward something that has felt at times like survival, something deeply personal. My posts have become much less frequent, my ability to keep up with comments and correspondence greatly lessened. So many of you have been supportive, and that means more to me than I can say. In recent weeks, I’ve tried to focus more on what’s going on in our house, taking better care of us and myself, and trying to rein in my not-so-great health problems.

She was our matriarch, our cheerleader, our safe and welcome place. I’ve thought a lot about Mamaw being a 20+ year survivor of breast cancer before she died from ovarian cancer this year. I’ve thought about her entire life, all of her challenges, everything she overcame, and how she did all of it to the very last with honor, dignity, and grace. She was tireless, relentless, irrepressible, and just plain tough. It would take several internets to describe everything I learned from her.

Lately one of those lessons has been present almost constantly in my mind. The combination of determination, hard work, faith, time, and love can overcome most anything, but it’s up to you to do what’s necessary because nobody is going to do it for you. She’s physically gone now. She imparted all the wisdom to me that she could. Now it’s up to me to live like I take that seriously. You’d think at almost 37 years old that I would have figured that out by now, or perhaps figuring it out and living it out are two much more different ideas than I realized until now.

I’ve gotten back into running again and am actually eating a lot better. I’m treating my body less like an abused machine. I’ve lost about 10 pounds so far, and while my knees are barely hanging on, running has been like opening up my windows and airing out all the stale parts of myself. I think about her a lot when I’m out running. I think about how much my body hurts, and I think about all the physical pain she endured, that she endured with such toughness, will, and dignity. Then I straighten up and lift my pace.

I’m running toward something; I get that now. You can only bemoan life and circumstances and feel sorry for yourself but so much until it drains everything from you and leaves you no further along than you were. She always kept trying to tell me that. I’m now running toward a me who is strong enough to be a good dad to two perfect boys and a good husband to the love of my life.

I printed the original post I wrote two years ago in honor of her and gave it to her before she had surgery to try to remove her ovarian cancer several months before she died. She said she kept it with her all the time and read it almost every day, and more often on days she wasn’t feeling well. As I go back and reread it now, some things are hard to believe. I really did think she’d live forever. The last time I saw her as I was getting ready to leave and make the long drive home she asked me, “Do you really believe all that about me?” I said, “Every bit of it, and so much more.”

After she died, I brought home a couple of boxes of things we’d given to her over the years, cards and letters I’d sent her from as far back as when I was very little that she’d actually saved, pictures, other items I’ll always treasure, and that printed copy of that blog post she carried around with her until she died. Below is that post in its entirety.

I miss you terribly, Mamaw. I love you. You’ll always be my hero.


September 29, 2008

“What My Hero Taught Me About Parenting an Autistic Child”

For our big trip recently, we went to my grandmother’s 90th birthday party. To say she is our family matriarch is a profound understatement. Four generations of our family piled into her house to both celebrate her and how triumphantly she has lived through everything she has overcome.

She looks about as much like 90 as our cats look like giraffes. I fully expect her to live to be 125. It was only a couple of years ago that we finally talked her out of cleaning her own gutters. She was talking at the party about needing to get out and powerwash her siding.

She lost her first husband to health complications from him being a coal miner when she was only 25. She became a widowed single mom to two kids – my dad who was six at the time and my uncle who was only a few months old. She became a waitress and sometimes walked to work with a pistol in her pocket. The Kentucky coalfields were rough places. She literally walked uphill both ways to work and home again.

She kept a couple of pigs that became meat during the winter and traded molded butter she made for groceries. They lived off that, biscuits, and whatever they could grow or raise. I doubt she ever slept. And still, poor as dirt as they were, if any of the neighbors’ kids were hungry and stopped by, she would feed them without thinking twice about it.

Throughout my family’s struggles growing up, she always fed us and bought us clothes to wear and made sure we got to school. We’d play cards after school and I’d feel completely content with the world. When I was in college, she would give me everything in her house when I came to visit. My car would be packed full of groceries, things she had canned, a hundred rolls of toilet paper, and anything else that she thought I’d need.

But more than anything, I always knew – and still know – that whenever I’m at her house, I am always safe and loved. Whatever we’ve needed, she’s been there for us. I don’t know how she’s afforded half of it. She’s treated everyone like family. She’s done so much for people that the only person who knows even half of what she’s done is her.

Many years ago, she had breast cancer. Watching her go through chemo was painful, though obviously nothing like all she herself had to endure. To watch such a formidable woman struggle that hard made the gravity of her fight clear. She had fought off so many challenges like a black belt karate master that seeing her go near the brink was uncharted for all of us. My heart ached for her. But she won the fight, and won triumphantly – because that’s how she does things.

There is no gift I can give her to adequately express how grateful I am that she is my grandmother, and how happy I am that she lived long enough to see me become a father and try to emulate as a parent as best I can some of the lessons she embodies. These past three years, I have drawn on them a lot as I have tried to understand how best I can be a good parent to our little autistic wonder.

There are so many lessons I could share, but here are at least some. I hope her wisdom means something to you too.

  • Your children deserve everything you can give them. You do whatever it takes to make sure they realize their full potential, even if hell itself should bar the way. Nothing is more important.
  • Make your home a safe, loving, warm place for your children. When they walk through that front door, they need to feel that everything is OK and that everything they need is there.
  • When an obstacle appears between you and what you’re working toward, you take your fists and beat it down. Turning around isn’t an option. Kicking butt is.
  • If God made it, you love it. God don’t make no mistakes.
  • Making mistakes, failing, and generally making a mess of things is fine. Giving up isn’t.
  • If someone you love screws up, the best way to help them through it is to love them that much more.
  • You can’t fix the past. It happened; make your peace with it and move on. Your family needs you in the present, not in the past.
  • Whoever comes through your front door, you welcome them and hand them something to eat. Make it to where if a guest goes hungry, it’s their fault. Food for her is a symbol of welcome, respect, and care.
  • Most problems in your life can be solved by hard work and time. Most of the rest can be solved with harder work and more time.
  • Be direct, constructive, and honest. There’s no need to dance around something when being direct would make the situation much better off. Life’s too precious to waste time talking around stuff.
  • Be generous to the point of extravagance and expect nothing in return. Somehow it seems to work out that you get repaid manyfold. She’s both generous and thrifty and somehow makes it all work out fine.
  • Be someone people feel they can turn to without hesitation and without shame. Be someone who accepts others right where they are.
  • One of the best signs that you’ve lived your life well is that the children surrounding you at your 90th birthday turned out fine.
  • When in doubt, go have a cookie and a cup of coffee and you’ll feel right as rain. Hot biscuits, gravy, and some apple butter work just fine too.
mamaw-and-us.jpg

(90 years old my foot.)

Happy Birthday, Mamaw!!

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Updated 6/23/10 – Graduation video! Grab some tissues and prepare to be inspired. Thanks to the proud mom for posting it! Congrats Jeremy!

Alternate link to YouTube video

Many of you have probably read one or more of Chantal Sicile-Kira’s books on autism, particularly Autism Spectrum Disorders: The Complete Guide. Through her books and interviews she’s done, you get glimpses into the life of her son Jeremy, who is now 21, and the many challenges they’ve faced and overcome together. If there were ever an example that being autistic and unable to verbally communicate doesn’t mean you can’t do incredibly awesome things, Jeremy is it.

On June 18, Jeremy will deliver a commencement speech at his high school graduation using his assistive communication device. He graduates with a 3.70 GPA and will attend college this fall. His seven years at Torrey Pines High School striving to achieve this inspiring goal is a testament to perseverance and determination. He dreamed a great dream and together with the support of family, school, and many others, he made it happen.

Of course the first thing that came to mind was the dream I had some time ago about the J-Man. Not surprisingly, reading about Jeremy’s achievement made me burst into tears and smile all over at the same time.

So thanks for being awesome, Jeremy Sicile-Kira. You inspire us and make us believe.

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Thanks for being awesome, Eric Duquette

by Tim on June 17, 2010

We’re getting a double-dose of the graduation awesome this week! I write this on the eve of Jeremy Sicile-Kira’s graduation from high school and the inspiring speech he will give. Hopefully we’ll get a chance to see it online somewhere soon.

Earlier this week, ABC News featured Eric Duquette, salutatorian at Smithfield High School in Rhode Island. Grab some Kleenex, cry some inspired and happy tears, and read on when you’re done.

You can read more about him and his family’s amazing story on the ABC News site.

And, of course, I’m still reminded of my dream about the J-Man, and I still get that good kind of tears.

So thanks for being awesome, Eric and Jeremy. You both inspire us, you’ve put down a trail for us to follow, and you’ve shown us how determination, love, and hope are stronger than every challenge before us. We’re proud of you, your families, and the supporting casts of hundreds and thousands who’ve walked with you along the way.

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Big B, Little B, What Begins with B?

by Tim on March 2, 2010

Dr. Seuss’s Birthday! B, B, B!

We’d be seriously remiss if we didn’t mention that today is the birthday of the great Dr. Seuss. We feel forever in his debt because books like the ABC book, There’s a Wocket in My Pocket, Mr. Brown Can Moo, Can You? were some of the most essential pieces of the J-Man’s early learning. We found them indispensable in motivating him in his speech and reading work. Many of his early sounds and very likely much of his early reading skills and knowledge of the alphabet came from these Seuss books.

I have the ABC book memorized still. I spent many a day calming him down by reciting it and little by little letting him try to fill in a sound or word whenever I paused. After a long while, we could do the whole thing together. He’d say the next syllable, and then I’d say it, all the way through. We could do this without the book, both of us repeating it from memory like a liturgy. Really, that’s pretty much what it was for us.

So, Theodor Geisel, we thank you and honor you for everything you mean to our family and millions of others around the world.

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Thanks for Being Awesome, Nathan Baker (Updated)

November 12, 2009

[Post edited - I realized that those of you subscribed to our blog via e-mail never even saw there was a video in the version of this post that's on our site. You can go directly to the WRAL site and view it if you can't see the video here. -Tim] As rough as it’s [...]

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A Blessing for the Day

October 26, 2009

I heard this in an audiobook I was listening to while waiting to pick up the J-Man from school. An elementary school parking lot is not the most ideal place to get emotional, but I doubt anyone noticed, and who cares anyway. It feels like it was written for parents like us. It’s beautiful, and [...]

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