Category Archives: Hacking Autism

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.

 

 

 

 

 

 

100 Dollar OLPC Tablet – for autism families?

Started writing on Google+ and decided to finish there.  My thoughts on the new 100 dollar tablet and its importance..not only for the developing world, but for special needs families.  You can read my Google+ post here.

Hacking Autism: St. Leger’s Make Autism Personal

Jim and Schuyler St. Leger

One of my most enjoyable moments at Hacking Autism was meeting Jim and Schuyler St. Leger.  This father and son tandem brought hope to the event with their warmth, infectious joy, and concern for those with autism who are lower functioning.

They made autism personal.  They gave it a voice.

When Jim spoke about autism, he didn’t limit his thoughts or concerns to his own family.   He spoke of everyone with autism and seemed to have a special place in his heart for those less high functioning.

Here is a taste of Jim speaking about autism.

When interviewed in the ABC7 story below, Shuyler reflected his father’s heart, and requested apps for those less high functioning than himself (so much for those who don’t see the empathy in kid’s with autism or aspergers).

The ABC7 story actually has footage of Schuyler and I talking at lunch.  I was doing the listening, because Schuyler was giving me a tutorial on the construction and production of 3D printers.  In fact, he pulled a whistle out of his pocket produced by his very own 3D printer…a real whistle.

Throughout the lunch I was in awe (Shuyler is 11 year’s old!).  Afterward, I walked over to Jim, who happens to work at Intel.  I jokingly questioned Jim about Intel hiring the wrong St. Leger (forgive me again Jim).  The look on his face, lead me to believe this was not the first time the subject had been broached (hopefully not by his bosses).

Take a look at Schuyler’s talk on 3D printers here.

As the father of an autistic son who is verbally challenged, I found Jim and Schuyler to be an inspiration.  While talking to Schuyler, it was as though I was receiving a glimpse of my own son’s mind might at work.  Unlike Schuyler, my son is more writer than scientist (he is a published author), but their mental energy is startlingly similar.

We need high functioning autism families like the St. Leger’s.  Their lives make autism personal, and when they speak on behalf of those who are lower functioning it inspires.

It inspires those who can hack autism, to get in the garage and invent, so every person with autism can be heard and reach their potential.

Hacking Autism: Schuyler on 3D Printing

This is Schuyler St. Leger who along with his father Jim serves as the subject of my post called “Hacking Autism: St. Leger’s Give Voice To Autism“.

Here is the section of the article discussing 3D printers:

The ABC7 story actually has footage of Schuyler and I talking at lunch.  I was doing the listening, because Schuyler was giving me a tutorial on the construction and production of 3D printers.  In fact, he pulled a whistle out of his pocket produced by his very own 3D printer…a real whistle.

Throughout the lunch I was in awe (Shuyler is 11 year’s old!).  Afterward, I walked over to Jim, who happens to work at Intel.  I jokingly questioned Jim about Intel hiring the wrong St. Leger (forgive me again Jim).  The look on his face, lead me to believe this was not the first time the subject had been broached (hopefully not by his bosses).