Tag Archives: Parenting

Let’s Talk Autism Burnout (Part 1)

This blog was born out of my desire to apply technology to the task of overcoming human limits.  The limits in mind were intellectual disabilities, especially autism.

The first stage in the unfolding of this dream will soon be launched, in the form of a communication app for non-verbal children with autism.  We call it “Quick Talk.”

I have learned from friends local and around the world, that there is something more important than this app.  This lesson is tools and solutions are useless without inspiration.  Without the creative and innovative energy to use them, they will fail in their purpose.  I am writing this as a contribution to the cause of inspiration.  I hope to keep the flame of optimism alive in our hearts as we fight autism.

Having spent 17 years parenting a child with autism, my wife and I are intimately aware of the painful difficulties involved with overcoming this affliction.  Autism has a personality and character all its own, and beating it requires understanding what we are up against.

Autism is persistent.  Once progress has been made, it rears its ugly head, and unleashes a fresh set of symptoms.  These new symptoms are often completely different from those we have previously faced.  Just when we thought we would be celebrating, we are forced to start the fight all over again.

Autism is ruthless.  It lacks any sympathy for our hopes, plans, or dreams.

Autism isolates.  It aims at our child’s mind and hits us in the heart (it can do the same to their teacher or therapist).  Autism uses our emotional despair to isolate us.  It leads us to believe no one cares or understands, which makes us retreat socially.  This is what autism loves.  It knows when we are alone, we are most easily defeated.

Autism silences.  It silences the child’s voice, stifles his parents joy, and quiets the enthusiasm of those who teach or provide them with therapy.

These are just some of the ways in which Autism burns us out.

These difficult times require us to remember our children are a canvas of possibilities.  It is our touch, along with all those who support us, which can turn the empty canvas into a beautiful masterpiece.  This mentality has helped us get through many a difficult day, week, and month (even year).

By no means do I have all the answers.  We are still fighting, learning, and resisting burnout.  What I do know is for our son to reach his potential, we have to beat burnout, and help those who support us do the same.

In my upcoming posts, I plan to show how the innovation culture of Silicon Valley has helped me beat burnout, and can help you as well.  

 



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Hope: Kryptonite For Autism

Blogging is suppose to be more relaxed, so let me take advantage of this informality.  I am going to use an awkward literary analogy, because it is the only way I can describe how I feel.

I believe hope is kryptonite for autism.

Optimism is the faith that leads to achievement.  Nothing can be done without hope and confidence.

Helen Keller

Let me explain.  Almost everyday I read, see, or hear something with the potential to steal hope from children, adults, or families effected by autism.  I don’t think it is intentional (at least I ‘hope’ not), but it happens.

From the moment a parent is told their child has autism, they are faced with an overwhelming number of issues.  A very helpful blog post written by Doug Goldberg describes this experience as “The Stages of Grief in Learning your Child has Special Needs.”

While we manage these stages, it is difficult to have or hold on to hope, and yet hope is essential.  Regardless of what program of early intervention we embark on, or medical treatment we pursue, the road ahead will be difficult.  We won’t sustain the necessary effort without hope (at least not in healthy ways).  We need hope and can’t afford to have anyone take it away.

Beware how you take away hope from another human being.

Oliver Wendell Holmes

One of the most unfortunate things anyone can do is steal this hope. Unfortunately, it can often happen in the name of protecting us, and without the thief knowing what they have done.

I am aware of the masquerading experts, offering miracle cures.  They take money from trusting families, and leave them and their children worse than they found them.  We need to protect everyone from these dangerous people, but we need to do it without stealing hope.

Medical professionals and therapist should tell us the truth about our children, but once again, can’t this be done without stealing hope.

The doctor who confirmed our oldest son’s disability told me his diagnosis, but allowed me to have hope.  He said, “Russ, let me tell you something.  You don’t have a special needs baby, you have a baby who happens to have a special need.”   He told a new father the truth, without diminishing the moment.  He reminded me to celebrate the birth of my son, which ignited a vision in my heart for possibilities, rather than doomsday scenarios.

The hope given to my wife and I by this doctor, as well as countless friends and family, has provided us with the strength to overcome.  We have selected our doctors, therapist, and advisers with this quality in mind.   We want the truth, but we also want a path to travel, a journey to take, and a hope to pursue.  Everyone needs this.

Hope is kryptonite for autism.   Hope is kryptonite in the battle to overcome any and every special need.   It keeps us going when the future seems bleak, and medicine has no answer.  It lifts our spirits, so we can celebrate the smallest steps of progress, with the emotion of monumental victory.  Hope keeps us looking for answers, when all around list reasons to give up.  Hope is what drives the researchers at UC Davis Mind Institute, Autism Speaks, and countless community groups.  Each one of them keeps pursuing answers and raising money, because they believe tomorrow can be better than today.

When autism rears its ugly head to defeat us, we need our friends, family, and professionals to pull out the kryptonite of hope.

 

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Is Android The Tablet For Autism?

Photo Courtesy of Watcharakun

Began as a Google+ question, became so long, I felt I better post it on my blog:

I was pondering a post to my blog with the above title.  This question feels like a betrayal, since I am a long time Apple fan, and loyal supporter of Mr. Jobs.

Nevertheless, it is a question I have been pondering, and one worthy of being asked.  Why should everyone purchase an Apple IPad, when their entry price is 500 dollars?

Shouldn’t we be looking at the system that provides the consumer with the sub $250 priced Barnes and Noble Nook Color?   It has received incredible reviews, and is more portable at 7 inches than the IPad.   How about the Archos Android tablets, which can be found for $199, and even less in some places?

My argument is on price.  Affordability.  What would it take to put one of these tablets in the hands of a family working to overcome autism?

Rather than have all these great stories written about the benefits of an IPad priced beyond the reach of most who read them, shouldn’t we begin a conversation about how to spread the benefit?

Phil McKinney, the CTO of HP, recently made the point that IPads had sold to the tune of 14 million units (updated number 28 million), but that pc’s in the same time sold 500 million units.   This means that the large majority of people haven’t decided to spend 500 dollars or more on a tablet.

No doubt this is an issue of them not seeing the value, but it is also a question of price.

What price could lure even 100 million consumers into the market, who would never consider spending $500 on an IPad?

Could Android lure those resistant or hesitant consumers into the market with a cheaper competitor?

I think so.   I think parents and family members of special needs children and adults need Google and their partners to get this done (maybe HP and Hacking Autism will help).

We need a sub $150 Android tablet, for special needs families, who desperately desire the opportunity to unlock their child’s potential with this tool.  People who could care less about aesthetics, and need a functional device with the right software to help their children learn and communicate…to help their children be included.

Personally, I think it ought to be about 7 inches, so it is portable enough to travel anywhere easily, but with a screen large enough to provide a tablet experience (a paperback size tablet).

If a tablet really can make a difference in the life of an adult or child with special needs, should the autism community begin to look for a company that prices their machine at an affordable price?  A company that doesn’t just notice the impact on autism, but gets involved in producing a machine accesible to the entire community.

Maybe I’m dreaming, but I think Google might be up to the challenge.  In any case, I want to remember families like my own, faced with the daunting challenge of autism, and in need of hope.  Families watching the IPad sensation in the autism community, but unable to participate.

Who knows, maybe Apple will read this and do something?

Note:  More Watcharakun photos found at…

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Building A Dream Team

Building A Dream Team

 

It is a terrible thing to see and have no vision.

Helen Keller

After almost twenty years of parenting children with special needs, my wife and I have learned the necessity of vision.  We have also learned a great deal about the importance of hope.  Without vision and hope a special needs parent can be overwhelmed by difficulty, disappointment, and discouragement.  The daily difficulty of life.  The emotional disappointment of unfulfilled expectations.  The energy sapping discouragement that comes when we have been sobered too much, and helped too little.  All of these must be defeated to successfully build a family with special needs.

Hope and vision are bulwarks against the staggering emotional toll these overwhelming forces can take on our lives.  They keep us from becoming negative about our future, family, or even ourselves.   They help us see what others might not see, believe where others might give up, and exert effort when circumstances tell us to abandon the cause.

Hope and vision are what lead my wife and I to build a “Dream Team” for our sons who happen to have special needs.  At the time, we simply referred to our efforts as building a team.  Since then we have come to realize this team was a dream come true.

The original “Dream Team” represented the U.S. in the 1992 Olympics.   They won the gold medal in unmatched style.  Since then any time a collection of stars are assembled to accomplish a challenging task, the name “Dream Team” is considered if not applied.

When we think about the friends who have come together to help our children, we see an equally inspirational team.  We can call them the “Dream Team” without any sense of exaggeration.   This collection of friends supplements our families love for our sons.   They care, serve, and innovate.  They challenge our limits and fears in an effort to help our children fulfill their destinies.  They make sure our kids are socially included in everything from sports to dating.  Every child with special needs should have just such a “Dream Team”.

The writing goal of this post is to provide some ideas, insights, and tips about how to build a “Dream Team” for your child.

Let’s take a look at five steps you can take toward building your own “Dream Team”.

Start Early

My wife and I began thinking about our children’s future very early.  We imagined elementary, middle, and high school.  We remembered our own experiences, and the experiences of children who were mistreated regularly. Clear in our minds was the fact that no group was more susceptible to isolation, bullying, and general mistreatment than special needs kids.

Those early imaginings brought to mind my own personal experiences of being protected and protecting others from bullying.  I decided that my children were going to need the kinds of friends who were willing and capable of protecting them, and so began my journey to find families with children who might share this vision.

We began this quest when our oldest was about 5 or 6 years old.   You have to start early.

Connect With Parents

The connections we make with parents will determine the friendship opportunities of our children.  This is true for young kids whether they are typical or have special needs.

My wife was the one who launched an innocent event, which produced lifelong connections with parents of children who would eventually share our vision.

She turned my son’s birthday parties into must attend events.   Inviting families from his class at school, our church, and our neighborhood produced large crowds every year.   It was overwhelming at first, and not a little expensive, but then we began to notice…we were building a community of connections for our son.

We spent loads of time with these parents, and eventually built unique and special connections.  We relied on them for personal friendship, family advice, and fun.  Some of them had special needs children, while many of them had typical ones.

From this group of relationships came children whose hearts were drawn to ours in a special way.  They had grown up with our kids, and saw them as friends not special needs kids to be protected.  They became buddies, partners, and mentors to them in programs like E-Soccer and Hope Technology School.

What we failed to realize then, but understand now, is that our refusal to be isolated as special needs parents helped our children.  We made connections to parents, and those parents inspired their children to make connections to our sons.

Understand, Educate, and Inspire

The easiest friendships for children with disabilities to build are with other special needs children.   We wanted those for our kids, but we also wanted them to have typical children as their friends.   This meant making the extra effort with typical families.

What we learned very quickly, is that most people were unaware and uninformed, when it came to the subject of special needs children and their families.  We realized that if we were going to have friendships with typical families, it would require some effort.  We were going to have to understand, educate, and inspire.

The understanding meant exercising a relaxed attitude toward awkward statements or insensitive actions.  We had to make decisions not to be easily hurt, socially embarrassed, or emotionally reactive in the face of inexperience.

We had to learn that the right response to difficult moments was to educate and inspire.  This meant teaching people what they might not know with humor, sensitivity, and patience.  It would also require the ability to communicate a positive and inspiring vision of life with special needs—one that would attract rather than repel.

Over time it became apparent that the large majority of people with whom we had contact wanted to be involved with our family.  There is no question in our minds that this happened, because we put ourselves around people with big hearts, and we made the effort to understand, educate and inspire.

The world is filled with families who would love to be part of your family, and children who would love to be on your child’s “Dream Team”.   We simply need to be understand, educate, and inspire.

Make It Fun

All children, kids, and teenagers like to have fun.  If our special needs children are going to have great friends, then our homes are going to have to be great fun.   I wish I could say that I understood how to make this happen, but the person in our family who understands fun is my wife.   The good news is that I was smart enough to follow her lead, and in time I like to believe I have improved in that area.

We have invested time and money into making our home a place where people can have fun.   That’s right, in the midst of the everyday stress of autism we have had to learn how to make life enjoyable.

This fun has made kids want to come over our house, which has motivated parents to call us for play dates over the years.   If you make it fun the kids will come, and some of them will become a permanent part of your child’s “Dream Team”.

 

Make It Mutually Beneficial

We are grateful for those kids who have become part of our children’s “Dream Team”.   That gratitude has motivated us to ask how we can help them.  We want them to feel like they get something extra special out of their relationship with our family.

This has lead us to love, support, and believe in the kids on our “Dream Team” as if they were our own.   They have become extended family.   Whether it is filling out a college recommendation, providing some coaching, or helping them reach their goals—we want to do whatever we can to make certain that they experience benefits from being a part of our “Dream Team”.

Today could be the beginning of a brand new chapter in the life of your family, if you begin building your “Dream Team”.

 

 

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