HBO: A Mother’s Courage: Talking Back to Autism

March 30, 2010

International Autism Awareness Day is on Friday, April 2nd and what better way to celebrate than by watching an HBO documentary about a family from Iceland that travels to the United Kingdom, Denmark, and many different states in the US to find ways to help their child with autism?

Producer Margret Dagmar Ericsdottir decided to film her search to find help for her son, Keli, who is ten years old and severely effected by autism. Directed by Fridrik Thor Fridksson (the Oscar nominee Children of Nature), and narrated by Oscar winner Kate Winslet, the film takes us to different places where Margret interviews parents, advocates, scientists and professionals. Temple Grandin, Ph.D., whose life story recently aired on HBO, provides insight, as does Dr. Geraldine Dawson, chief science officer of Autism Speaks. Dr. Simon Baron-Cohen director of the Autism Research Centre at the University of Cambridge, and Dr. David G. Amaral, research director, Mind Institute also provide food for thought.

This documentary does not sugarcoat autism, or celebrate it, or cure it. The movie’s strength lies in that it shows the heart-wrenching reality of what families have to go through to get assessments, diagnosis and advice; it shows the reality of the pain parents feel when their bubbly, verbal child regresses and becomes autistic. We visit with families who have more than one child with autism. A Mother’s Courage does not try to cover all the autism treatments and therapies (i.e., biomedical interventions); it would take a series to do that, not just one film. Instead, the last half part of the film focuses on what Margret has found that works with her child, the Rapid Prompting Method (RPM).

This HBO film is a good resource for promoting community awareness that families can share with their relatives and neighbors. They will gain a better understanding of what families effected by autism go through every day (the motivation behind my writing the recently published book, 41 Things to Know About Autism).

A Mother’s Courage shows us how caring and concerned professionals are; they don’t have all the answers though they wished they did. Joseph E. Morrow, Ph.D., BCBA
and Brenda J. Terzich-Garland, M.A., BCBA founders of Applied Behavior Consultants (ABC ) in Sacramento say that 40 % of the children who attend ABC school at an early age (where they receive intensive therapy based on the principles of applied behavior analysis, ABA) are able to be integrated in their neighborhood school after two years. We are left thinking, but what about the other kids — the kids that make some progress with ABA but never learn to communicate past the “I want” step with the Picture Exchange Communication System (PECS) or never get past three-word sentences?

In the film, we find out that luckily, Portia Iverson and Jonathan Shestack, co-founders of Cure Autism Now, wondered the same thing, and brought Soma Mukhopadhyay to the United States after hearing about how Soma had developed a method to teach her son, Tito.

Margret visits Soma, now the Educational Director of HALO (Helping Autism Through Learning and Outreach) based in Austin, and meets Linda Lange, founder of HALO and other parents and their children. For parents of children with autism who are not familiar with the Rapid Prompting Method, this is the part of the movie that will enlighten them to another possible method for teaching academics and communication. RPM is not a miracle cure, it’s a way to try and reach children using the learning modality that works best for them. The footage of Soma working with Keli gives a good overview of RPM.

My son Jeremy was taught by Soma for a year and a half on a bi-monthly basis when she lived in California. Recently Jeremy wrote an article on How The Rapid Prompting Method Gave Me A Voice. After watching A Mother’s Courage he spelled,

“I am really glad to see people talking about people like me. The fact is, there are many of us. I think there needs to be more understanding. I get frustrated by people not realizing I am smart. But I know I am one of the lucky ones because my mom found a way for me to learn and communicate and the school continued.”

I wish there would have been a better choice made for the final scenes of the movie. Whereas Soma is down to earth and logical, the music took on heavenly tones and rose to a crescendo with angels singing in the background. The symbolic last scene of mother and son walking though a fog with the sun and heavenly music breaking through was heavy-handed.

Much better to have ended on Soma’s words — realistic and inspirational in a practical manner:

“What we have to do now is to educate him so he becomes aware of what he is capable of and lives according to his capability.”

Isn’t that what all parents strive for and want for their children?

Back home after the fires

October 15, 2007

Wednesday morning – Everyone is still asleep in this tiny room in Imperial Beach where we have evacuated from our home in San Diego, but I want to know what is going on. I turn on the TV without the sound and see the same images of fire and brimstone on the screen but there is a noticeable difference though I can’t put my finger on it right away. Then I realize what it is. No wind! This is great. I am fixated on the scrolling words on the bottom of the screen until I see what I’ve been waiting for. ‘Residents may return to these previously evacuated areas: … Carmel Valley…Yes! We can go home! A little while later I call my friend Veronique who never left her house and I hear a strange noise in the background. “Oh my God,” she says “Planes! I hear planes!” This is extraordinarily good news because it means the wind has really died down at least in our area and they can get planes up to fight the fire burning east of us and hopefully everywhere else.

My husband is still thinking I should take up the generous offer of the hotel room in Orange County as the air quality is pretty bad, and take the kids and the dog up there. We find out the Interstate 5 is blocked because of fires in Camp Pendelton, so for now it is not even an option, and I decide to make a decision once we are back in our neighborhood. We pack up the car, and head north. We stop in downtown San Diego to drop off my 18 year old autistic son, Jeremy, at Dana’s place. Dana is one of his Afternoon Angels, college students who help me teach and take care of Jeremy as he requires 24 hour support. She hasn’t left town and Jeremy and Handsome (his dog) are going to hang around with her while we assess the situation back home. It is extremely difficult to get anything done and keep an eye on Jeremy at the same time and I know we are going to have a lot of clean up to do. I wouldn’t be able to keep him occupied and out of the soot. I hope Dana is going to be around the rest the week, because the rest of the Afternoon Angels have flown the coop and gone home to LA, and although he did well for a few days, he is going to start wigging out if this goes on for too long. My fifteen year old, Rebecca is on her cell phone, checking to see who is going back to our neighborhood that she can hang with when we get home. She is still thinking of this whole experience as a week’s worth of snow days. Wait till she realizes how much clean up we are going to all have to do.

Wednesday afternoon – As we get off the freeway and head down the street near our house, it is still pretty calm and quiet here, not everyone is back. Tree branches and leaves are scattered everywhere, some trees have been uprooted by the wind. There is a gardener mowing the grass along the sidewalks and it looks like he is just spewing brown ash into the air. We park in front of our house and see piles of soot and leaves along the door and garage, the winds have blown it all up against the house. Inside, everything is covered in a fine layer of soot that has blown in through the cracks.

We unpack our car, but leave everything near the door, because we know that the winds could pick up and the fire could still change directions and head back this way. I check the landline voice mail and call family to tell them we are back home. I try to call Jeremy’s instructional school aide, Maureen, one more time without success. I am concerned about her, as when I spoke to her last, she was evacuating and she could see the flames a half a mile form her house. I wonder if her home was spared.

I call my mom in Pasadena, now that I am home, she wants to know when I am coming up to see her. I explain I have to clean everything up and the roads are still not clear heading north on the Interstate 5. The irony in all this is that we are in the middle of moving her down here, a mile from my house to an assisted living home. She has just lost her husband of 56 years, my father, and she requires 24 hour care due to Parkinson’s. Good thing we hadn’t completed the move or she would have been evacuated as well. I’m not sure I could have cared for her as well as my son through all of this, and I wonder how long now till I can move her down close to me with all that is going on.

We start cleaning the soot in the bathrooms and the kitchen; it has gotten into everything and it smells like damp soot, like a store having a fire sale. We keep the windows closed and put the air conditioning fan on to clean the air. We strip the beds and wash the sheets, everything is covered in ash. I feel so lucky to be alive and back in my home. I’m not sure if I will have help with Jeremy over the next few days, so I decide to take advantage of the fact he is not with me to see a girlfriend. My friend Veronique picks me up and we head to the beach. As we walk and play catch up with our stories we can finally breathe some semi-fresh air. I keep feeling how lucky I am. We stop at the Poseidon, my local Cheers which is right on the beach, and have a drink at the bar. Everyone is commiserating and telling evacuation stories. We are the lucky ones. Each of these moments feels like a gift, to be treasured and savored. I feel guilty that my home is still intact when others have lost everything.

Once back home, my brother the cameraman calls. He and his soundman have had no sleep, they have been covering the fires in Lake Arrowhead and have been covering the fires all night for Good Morning America. He is now headed to Rancho Bernardo and wants an update on the roads as he doesn’t want to get stuck, he is going to crash at a hotel in Rancho as that where he has to be ready to roll the next day. We hope we will get to see each other within the next day or so. Funny enough, he was planning to come out this week to help move my mom down here, instead he is now covering the fires.

Thursday morning – I wake up in my own bed, feeling luxurious. I make my favorite coffee and drink it out of my favorite coffee cup (the blue one with the chipped saucer I have had since my Paris days) which I thought I might never drink out of again. Life is great. The house is quiet, the kids are still asleep. I turn on the TV, the Santa Ana winds have settled down, the fires aren’t as bad , and there are none left in the city of San Diego. It is now over in the east and to the north. For many the fire and its aftermath will not be over for years to come. There have been ten deaths, thousands upon thousands of acres burned and at least 1500 homes gone.

I know we will have to deal with drought, and get this mess in and out of the house cleaned up and that soon I will have to deal with the reality of my life that was interrupted before the fires. I need to go visit my mom and help her prepare for a move, I need to work with Jeremy’s school to make sure they are getting back on track (new school placement) and find out which Afternoon Angels are still around to help out with Jeremy so I can get what needs doing, done. I need to make sure Rebecca gets caught up in her school work. Oh yeah- and I need to finish my manuscript due soon. But right now, I am enjoying the feeling of luxury of being in my own home, I am feeling on top of the world. My family and I are so lucky, we are alive, we still have a home. Our neighbors are OK. It doesn’t get any better than this.

This first appeared on the Huffingtonpost.com  October 25, 2007