My in-laws are in town from Albuquerque. They haven’t seen Philip since last Christmas when we were still getting used to communicating with Philip with a letterboard. At that time I was unable to get Philip to do any spelling in front of anyone else. We still needed our enclosed space with no distractions. It was neat to see my in laws’ reactions to Philip communicating. I can hardly believe it has been just 8 months, yet his achievements between then and now seem to be years in between.
Yesterday I rewatched the movie A Mother's Courage: Talking Back to Autism with my in-laws so they could see Soma at work and how she has changed so many kids’ lives by giving them the tools for communication. If you have never seen it, I strongly suggest you watch it! I borrowed it from my local library. The film is a documentary from Iceland which has been adapted to English speaking audiences with Kate Winslet’s narration. It is the most balanced autism documentary I have seen. Margret Dagmar Ericsdottir, the mother at the center of the film, is the mother of then 11-year old Keli who is non-verbal. She traveled across the United States and England interviewing autistic people, academics, experts, and families to gain a better understanding behind the mysteries of autism and its treatments. The whole autism spectrum is well represented: Aspergers, “high-functioning autism”, PDD-NOS, regressive autism, and non-verbal autism.
I read in an interview of Ericsdottir that when she was making the documentary, she wanted to present an objective view of the wide range of autism and its therapies. She never expected it to lead to a personal breakthrough for her and her son. The breakthrough came when she met Soma Mukhopadhyay at her HALO clinic in Austin, TX. Here we learn how Soma found a way to reach her own son Tito and then transfer her techniques to America to work with many other children with autism. We see Soma work with kids one on one as well as in groups of 3 and 4 kids conversing with their letterboards. Some of the kids were pretty funny! All are much smarter than anyone would initially give them credit. One child Mitch is so good at managing stock portfolios he has come in fourth place in a national competition. He and his family can see a real future for him as a market analyst as it is an ability he can use despite not being able to talk. Finally we see Keli’s remarkable breakthrough. I will not ruin the ending for you. It was very moving.
Watching the movie again filled me with happiness and hope. Happiness because there are so many out there like Philip who communicate as he does. Hope because many more out there could be given the chance to communicate too. Philip is not unique in being able to learn this technique, but it will take courage to start a movement in this direction (I never understood the title of the movie before, but now I am getting it!). “Why courage?” you may ask. Parents have to be willing to change everything they ever thought about their son or daughter. Where they once thought their child was incapable, delayed, and without hope, they must now believe they are capable, intellectually age-appropriate, and have unlimited potential. Where once a parent thought they could rely on the expertise of others, they must now carefully examine every advice given (and at times even reject the accepted norms) and take on much of the educating and training of their child themselves. Where once it was convenient to isolate a child, it is now a responsibility to get the child out in the world as much as possible. Where once we viewed autism from our own perspective as a parent, we must now take a backseat and allow our child to teach us about autism.
I am grateful for what this film has started in our own family and for the movement it will continue in the world. The Golden Hat Foundation was established by Eriksdottir and Kate Winslet after the movie’s release. It is “dedicated to eliminating barriers for people with autism around the world, and creating an environment that holds these individuals as intellectually capable. The mission of the Golden Hat Foundation is the establishment of innovative campuses that offer people with autism the opportunity to learn to communicate, receive an education, job training and enjoy recreational activities, all within a supportive social network. When given a suitable education and the means to communicate effectively, people with autism can truly realize their dreams.”
I am doing my part in Buffalo to educate as many families about communication through Soma’s technique RPM by organizing local workshops conducted by Soma herself every 6-7 months. She will work directly with autistic individuals and their families. We will also have a day the public is invited to watch her work with children via a live video feed and attend a lecture. The next time Soma is coming to Buffalo is this October 9-11. Please let me know if you are interested in coming. (Yes, this is an advertisement within my blog. Clever-huh?)
With Soma at HALO in Austin, TX October 2012