Special Needs Parents are Geek and Cool

Special Needs Parents are Geek and Cool

I couldn’t wait to read the June 2012 issue of Wired, when I saw the cover story was “How to Be a Geek Dad“.  It was an inspiring read.  I related to it, although as a father of two sons with special needs, my approach is a bit different.  We don’t rely on science and technology projects to learn, we depend on them to help us overcome our human limits.

I am a Geek Dad

This Father’s Day our family won’t embark on a new Geek Dad Project.  Instead, we will rest, relax, and celebrate our already completed projects.

We will remember bringing the HP TouchSmart home, and using it to help my verbally challenged son find his voice.

We will laugh about our early experiments on the original iPad, which was given to us by a family friend.

We will celebrate turning touch technology to our advantage, with the help of numerous Silicon Valley engineers.

We will marvel at how deeply mobile touch technology has woven itself into our lives, turning everyday into an experiment.  The pictures turned into icons and messages.  The recording of a sister’s voice used to speak for her brother.

Those early fantastical dreams about the potential of technology to help us overcome human limits are now a daily reality.

I am a Geek Dad!

Am I a Geek Dad…or even Cool?

Since the Geek Dad issue of Wired conjured up positive images for me, it was sobering to read a different perspective in the New York Times on June 14.

The cover story in the June issue of Wired magazine, celebrating geek dads, is ruining my Father’s Day.  It’s got me thinking: should I be doing more?

Joel Yanofsky, NY times, Rethinking The Cool Dad

Having felt dad guilt on more than one occasion, I was completely sympathetic with Mr. Yanofsky’s experience.

Further reading made clear Mr. Yanofsky was not talking about incidents of dad guilt, but the life altering experience of parenting a child with special needs.

When you’re the father of a child with special needs, you have to rethink what kind of father you’re going to be. First to go is the notion of being cool. You will lose your cool – many times.  Count on it.

Joel Yanofsky, NY Times, Rethinking The Cool Dad

At this point, I both related to and understood Mr. Yanofsky, but when he began to take away my right to be cool—I resisted.

So even though you always thought you could live without a homemade hovercraft – and, face it, you can – you read some magazine article and there it is: one more thing you can’t do with your son. One more thing you’re being cheated out of.  It makes you bitter, then guilty for feeling that way.

Joel Yanofsky, NY Times, Rethinking The Cool Dad

Upon completion of the article I was proud of Mr. Yanofsky.  He eloquently described the emotional impact of parenting a child with special needs.  Some of the comments on his piece were negative, but these poor souls failed to understand this honest writers goal.

In my opinion, Mr. Yanofsky was trying to let the world know how it feels to be excluded.  Everyday wonderful experiences, opportunities, and products are advertised.   The large majority of them will not be within in the reach of families with disabilities, so they are left to watch others enjoy, while they can only fantasize.

We are Cool, We are Geek

Since I consider Mr. Yanofsky a soul mate, I will finish what he lacked the time and space to write.

Cool and geek are within the reach of all families with disabilities.  We can develop and establish seriously cool and deeply geek cred.

Here are some things which have worked for our family, and I believe can work for anyone willing to put in a little effort.

Learn Optimism

“But raising geeks goes beyond teaching them the difference between Darth Vader and Maul.  It means teaching them an empowering worldview.  It means showing them how things work and that with a little research, determination, and trial and error, they can bend the world to their will.”

Geek Dad, The Wired Guide To Being the Coolest

The most significant lesson I have learned in twenty years of parenting is remain optimistic.  This is an empowering worldview.

From the earliest days of parenting our first child with special needs, we believed technology was going to be part of the solution.  We also believed speech, physical, and occupational therapy were part of the solution.  These were our tools for successfully scaling the mountain of disability.

In a sense, I suppose I am saying what coach Jimmy V. said so long ago in his fight against cancer.

“Don’t give up, don’t ever give up.”

Embrace Innovation

While most geek parents are doing cool things for fun, parents with disabilities do them for fun, and to improve the quality of their children’s lives.

When my oldest son and I first played sports we were in a special needs league.  There were no typical kids involved.   While we were enjoying ourselves, both of us were looking for more.  We were looking for the experience so many other families were having—the feeling of inclusion, community, and all this entails.

At this point my wife and I took a gamble.  We left the special needs league to join some friends in creating our own soccer league.  This soccer league would have inclusion as its goal, in hopes of providing families with disabilities a complete community experience.

Guess what?  It worked and now E-Soccer has gone global, and is reaching hundreds if not thousands!

Practice Inclusion

The great benefit of our Jefferson Award winning inclusive soccer program, is the large number of typical friends our children have developed.   Long after the projects are completed, and sports are done, the enduring value comes from the   relationships.

The coolest and most important thing I have done for my kids is to help them build great friendships.  These friends have now lasted over a decade, and show no signs of decline.

Cool fathers make it easier for their kids to have friends.

Relentlessly Experiment

One of my favorite old movies is Lorenzo’s Oil.  It taught me to pursue solutions to my children’s problems through research and experimentation.

I can’t begin to tell you the number of things my wife and I were told would never happened, yet have taken place.   The reason for this is experimentation.

We have ordered a number of items, which never worked.  We have used an inordinate amount of time investigating therapies we declined to use.  We have placed tools in our sons’ hands, which have been dropped, submerged, and lost.  In all of this, we have learned enough to create.

Drawing on years of experience having fun with sometimes costly experiments, I launched a startup called Digital Scribbler.

Our team at Digital Scribbler developed Quick Talk AAC.  Now verbally challenged kids from around the world have a voice, because of our geeky and fun family experiments.

Celebrate Progress

Celebration is one of the central keys to making breakthroughs in a family with disabilities.  We applaud every inch of progress, maybe every centimeter.  We have had moments where standing ovations, chanting of names, and singing of homemade songs have been enlisted to mark the moment.

While the neighbor kid might build a robot, we are just as excited about our children learning to send an email…or in my kids case, launch their own blog (and we usually celebrate and play with the neighbor kids robot too).

Pursue Breakthroughs

Geeks are cool because they make breakthroughs happen.  They hack solutions, and overcome human limits.

My wife and I believe we are cool and geek, because our life has been about helping our kids overcome their human limits.  Each year our mother and father’s day cards confirm these statements.

Wired might not have written about families with disabilities, and their cool use of technology, but it was in the spirit of their Geek Dads article.

So, if you are a parent of a child with disabilities.  Admit, accept, and even share the pain and difficulty, but never ever give up the dream of being Geek and Cool!!

 

 

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About Russ Ewell

Since 1994 I have been devoted to the research and application of innovative technology solutions to education. My passion for these pursuits has been driven by my experience as a parent of children with special needs. During the economic technological growth explosion of the 1990's I was lived and worked in Silicon Valley, and was fortunate enough to find a group of people with similar interests and passions. As a result I was able to launch a non-profit called Hope Technology Group whose mission became advancing the use of technology in education. We eventually launched Hope Technology School, which has used technology to build a fascinating and effective educational program that practices full inclusion. Around the same time, I was fortunate enough to develop and build an awarding winning program called E-Soccer with the help of great friends and excellent coaches. These endeavors have left me with a continuing hunger to learn more about the possibilites of education, technology, and inclusion.

2 Comments

  1. Nneka

    Thank you so much for a truly honest, optimistic and pragmatic piece that reflects my thinking and attitude to the debate raised on “Rethinking the Cool Dad”‘ I understood and appreciated its honesty but felt that they were still missing ‘something crucial’. Your article potrays that balance I knew it was missing. For us, with our son diagnosed with PDDNOS, it’s been about what we CAN do, it’s been about making sure we have fun with the things that are fun for HIM, its been about not listening to the – ‘he cannots’, it’s been about using faith, technology, music, academics, therapy and sports to equip him to be the best he can be and loving the heck outta him. We are super geek and cool too :-).

  2. Joel yanofskyjyanofsky

    Thanks for your comment at mother lode and the kind words on the blog. I admire your optimism. It’s something I keep working on with mixed success. In fact that’s what my book Bad Animals: A father’s accidental education in autism is about. I think you’d find it interesting. Thanks again.
    J.

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