|Life Animated - a movie about the journey of an Autistic man and his famous family.|
It is also no secret that my husband and I are now on our second set of careers, I have been using needlework as a way to fund passions and give the flexibility that is needed to be available to deal with the needs of our kids. He is doing the same too - having built several large companies in the speech recognition area.
When looking for something else to do that was flexible, I encouraged him to do something socially responsible. Maybe it was penance for inventing the systems that have you "say 1 if you want it in English, 2 if Spanish". (You can ALL thank me for that backdoor out of the menu - 'operator'. I insisted during the first company). But I wanted him to find a way to use his incredible talents for the good of man. So he is helping several companies who want to use speech recognition to do good things in medicine, education, and other areas. One such company is about to launch their product and it is luckily timed with a movie that premiered on Friday - and I just have to talk about it after keeping mum for so long.
|Ron Suskind - You might have seen him|
on TV this week.
It was very exciting to have the opportunity to view the film several weeks ago in a private showing for a small group of us in Cambridge before the USA premiere in NYC on Friday. Even more fantastic to have Owen join his parents on stage and take our questions. I had seen Owen on The Daily Show last year and knowing his history - it just makes you choke up and cry. I encourage you to watch the trailer and if the film is showing anywhere close to you in the next few weeks, go see it. You don't need to know a child who is autistic to have the film resonate. As Roger Ebert said:
|An animation in the film capturing the moment when Ron|
used a favorite puppet of Owen's (side kick of Jaffar in Aladdin)
to talk to Owen and get a response for the first time.
It’s impossible to completely divorce my reaction to Roger Ross Williams’ remarkable “Life, Animated” from two of the most definitive roles in my life: father and film critic. For the former, the film emotionally forced me to consider my relationship to my sons as it captures a father whose life forever changes when his son’s autism puts up a wall between the two of them. - Roger Ebert, January 23, 2016The film is strikingly honest in the feelings of the family, both in the tragicness of autism and the hopes that their long (very long) road to reaching Owen took. But it doesn't gloss over the harsh realities of the future and the limitation that Owen faces in a world more suited to 'normal'. But one line sticks with me over and over from the movie - one that Ron has said to me in relation to our dyslexia as well. "Who defines what a meaningful life is?!" It is something that my neighbor, a robot parent and world famous psychologist, has said as well regarding their oldest child who is developmentally delayed due to epilepsy and is currently going through the same types of trials and tribulations of becoming semi-independent as a young adult in this world, just as Owen is filmed doing during the movie. She is the most lovely and loving girl! Her mother and I have spent many a night brainstorming job prospects with her on the porch and ways she can have a meaningful path forward that makes her happy to contribute to this world.
Who defines what a meaningful life is? That is so true and understandable by myself and the parents of any non-neurotypical child, whether they be affected by Downs Syndrome or Autism or Dyslexia. The film is full of powerful thoughts and surprisingly much laughter (The discussion between Owen's older brother and him about having a girlfriend is just priceless!).
Ron has been a fun person for my husband to work with. His stories of behind the scenes with powerful people are always interesting and hilarious. It is quite funny to hear on a Monday who called over the weekend to ask for advice - often I see news clips on CNN related to these 'guess who called' quips. He contacted my husband when he wanted to turn his method of reaching his son, called in the field 'affinity therapy', into a tool. Being one of a handful of best known experts in speech recognition, he quickly helped Ron put together a demonstration of the idea and they have been off to the races ever since.
|Sidekicks application to help a parent or therapist communicate|
with an autistic child using their affinities
So that is my 2 cents - go see the movie if you can. It is uplifting without having sugar and false hopes spread all over it. Having met Owen and knowing his parents, its true. Many, many years of hard fought work to reach him using the means that resonated with Owen. I have another friend from MIT whose autistic son will be entering college this year - having known him all his life and how much early intervention there was and the very hard work of both of his parents, a more engaged life can be achieved by many autistic people. It takes time, parents who will do anything that works, the gang of committed therapists (Cornelia Suskind is quick to point this out when you meet her), and tools that help them work with the child.