Tag Archives: Parenting

Creating an AAC Communication Game-plan

“What you want is a real talisman, a magic something you think I conjured up to coax Temple into joining life, as you hope your child will.  There was no magic; there was just doing the best I could.  That’s the point; that’s the talisman.”

Eustacia Cutler, A Thorn in My Pocket

I am grateful to special needs parents like Eustacia Cutler, the mother of Temple Grandin.  Ms. Cutler tells her story of raising Temple in the book titled “A Thorn in My Pocket”.   It is a story lived out in the 1950’s, long before the disability rights so many of us take for granted today.   Her story is similar to those of other courageous parents, who have made so many of today’s advances possible.

 Creating A Different Future

In our personal journey of building a special needs family, we have met countless parents like Ms. Cutler.  These are those who were told upon birth to institutionalize their children, but chose instead to create a different future for them.  They overcame extraordinary personal and societal pressures to build the best life possible for their children.

Overcoming Human Limits

All of these parents deserve our gratitude and admiration, because their pioneering efforts laid the foundation for the disability rights we enjoy today.  They are the one’s who made advocacy and inclusion possible.  The wonderful technologies, which help those with disabilities overcome their human limits, wouldn’t exist without them.

The Best Life Possible

I have been reflecting on the many lessons passed on to my wife and I from parents like these.   One thing seems clear; these parents met their differences and difficulties with resilience and creativity.  They viewed the future through the eyes of hope, and then worked with determination to make their dreams come true.

What were those dreams?

Giving their children the best life possible.

Raising a Verbally Challenged Child

As I ponder all of this, it is hard to imagine the difficulties faced by families whose children did not speak in the 1950’s.   We don’t hear as much about children with verbal challenges.

 For those of us with children who fall into this category inspiration can be elusive.  The future can be frightening.  Temple Grandin’s story might only take us for far, but then we must remember, it is the resilience, creativity, and determination that make her story an inspiration.

 Considering the immense challenge of raising a verbally challenged child with special needs in the 1950’s makes me grateful for today.  It makes me particularly grateful for Augmentative and Alternative Communication (AAC).  One can only imagined what the parent of yesterday could have done with today’s tools.

This imagining led me to apply the lessons learned from those who have gone before us to making today’s tools work.  What could the parents, doctors, therapist, and teachers who we have learned from over the last 20 years teach all of us about helping our kids use AAC?

I came up with 8 questions to answer based on the wisdom of those who have gone before us.

 

  1. What is AAC?
  2. When should we start?
  3. Where do we begin?
  4. Who does what?
  5. When will they talk?
  6. How do we make progress?
  7. What if it doesn’t work?
  8. How can we afford this?

 

My upcoming post’s will seek to answer these questions based on what I have learned and seen from others.    By applying these lessons, I am confident each one of us will be able to create an AAC communication game plan for our children.

 

 

 

 

 

 

Frustrated by your child’s school?

This is a quick post, because the last few days I have been talking to a number of people who have been frustrated by their child’s school.   They haven’t been able to get the help or services their child needs – services they know their child needs.

This is not about blaming the school.  There is little gained and no point to blaming teachers or administrators.   What we as parents must learn to do is to work with not blame the school – even when we feel the school has let us down.

I discovered a great article on this very subject and want to make it available to you here.  It is by Doug Goldberg of Special Education Advisor.  I don’t want to try and say what he has already explained superbly.

I hope this helps ease everyone’s moments of frustration.

Dyslexia: The Teacher Seldom Spoke To Us

Philip Schultz wrote an opinion piece for the New York Times on Dyslexia.  Every parent, teacher, and therapist of a child with dyslexia should read this article.  It is filled with real emotion, hope, and determination.  His words explain the pain, but they also paint a vision of great possibility.  I was especially taken by this particular passage.

“I was placed in the “dummy class.” There were three of us, separated from our classmates at a table in the corner of the room. One day, the teacher, who seldom spoke to us since it was understood that most of what she taught was beyond the reach of our intelligence, placed books in our hands and whispered that we should sit there quietly “pretending to read.” The principal was coming.”

Read more of my thoughts here on Google+, or simply go directly to his article at the New York Times here.

 

Autism Burnout: Connecting The Dots (Part 2)

Let’s Talk Autism Burnout was part 1 of this series.  In that post, I tried to frame the challenge of autism.   My purpose was to draw clear battle lines, so we wouldn’t make the mistake of fighting pain rather than finding purpose.

Autism is hard, and can consume our lives, if we don’t figure out how to turn the obstacles into opportunities.  Steve Jobs might call this connecting the dots.

“You can’t connect the dots looking forward; you can only connect them looking backwards. So you have to trust that the dots will somehow connect in your future. You have to trust in something — your gut, destiny, life, karma, whatever. This approach has never let me down, and it has made all the difference in my life.”

[Stanford commencement speech, June 2005]

I realize some may be tired of talking about Steve Jobs, since he has been in the news a great deal since his resignation.  My dilemma is I promised to provide lessons from Silicon Valley, which will help us overcome burnout.  No one typifies Silicon Valley better than Steve Jobs.  He has a great deal he can teach us about overcoming burnout.  So, let’s get back to this idea of connecting the dots.

“You can’t connect the dots looking forward; you can only connect them looking backwards. “

I believe in destiny, that each one of us is here for a reason.   I also believe time and chance happen to us all.   Connecting the dots has to do with taking whatever has come our way, and allowing it to lead us to our purpose.

I have seen this happen over and over again in the autism community.   Moms, dads, siblings, and grandparents taking up the cause.   These are the people raising the money, spreading awareness, creating breakthrough programs, and writing the software.  There are certainly others, but these families who have decided to find purpose in their pain, provide the sustaining energy to this passionate fight against autism.

Connecting The Dots

In the year 2000, if someone had asked me, would the small soccer game I organized to have fun with my sons be destined to become a global program, I would have said, “no”.   And yet this is exactly what happened with E-Soccer.

Looking back it all makes sense, but at the time I was simply trying to become a good dad.  E-Soccer was destiny, but it was invented to solve a simple problem. I wanted to help my sons have fun with me, and other families in the community.

I am not the only one.

Looking around the web you will find people like Rob Gorski, whose humor and honesty will help any family with autism know they are not alone.  There are authors like Chantal Sicile-kira whose books on autism and adolescence provide compelling answers and sustainable hope.  Finally, there are community builders like Stuart Duncan, who does everything within his power to make certain everyone touched by autism is connected.   These are just a few of the people I have discovered, who have connected the dots.  They understand autism is a challenge, but by connecting the dots have made it an opportunity to help others.   Everyone should do this, because one of the best ways to beat burnout is to connect those dots.

How can you find purpose in the pain?  How can you connect your dots?