As some reading this post already know, I recently returned from a trip to Nepal. I was part of a team of therapists and teachers from Knowledge for People, a non-profit organization that helps with autism education and outreach in developing countries. We spent two weeks in this beautiful, diverse country, working with wonderful people. It was simply an incredible experience overall, but nothing could have prepared me for the emotional impact it had on me at the end.
We spent the first few days getting over our jetlag, doing a bit of sightseeing, and acclimating to the culture. Then we worked directly with 28 families in individual sessions (which I described in this previous post). With the help of translators, we taught them the basics of PECS (Picture Exchange Communication System), ABA (Applied Behavior Analysis) therapy, and sensory integration. The parents were so appreciative, and we could see the children benefitting from just the couple of hours they spent with us. Many were nonverbal, and some of them took to PECS right away, which was so exciting to see and experience.
The parents we met and worked with are truly dedicated to their children and doing all they can to help them. Both mothers and fathers are heavily involved, and in many cases, so is the extended family. We worked with grandparents, aunts and uncles, and older siblings. It was so positive to see such dedication in a country that has little information about autism available. They try so hard, and I could see the worry and exhaustion on their faces. But I could also see the love. It was there every minute.
At the end of the week of individual sessions came the two-day presentation workshop. Sixty to seventy people filled the festive, tented area that was set up in the courtyard of the small center called AutismCare Nepal. Chairs were rented, banners were posted, lunch was catered. It was definitely a big event. Many of the parents and extended families we’d worked with attended, but so did teachers, reporters, pediatricians, and other doctors. We were thrilled with the turnout, even given the fact that Kathmandu’s public transportation system was on strike that weekend.
We prepared presentations on the following topics: general autism information, parenting experience, ABA therapy, PECS, social stories, and sensory integration therapy. Before the presentations began, we met with our translators to go over the material and see if they had any questions. I sat down with my translator, a doctor whom I’d already met a few days before when we had the individual session with her family – her husband, their three-year-old son, and his grandmother. She looked over the outline of my presentation about my experience with my now-14-year-old son, from the early days of being nonverbal and having agonizing sensory issues to slowly, painstakingly learning to talk and cope with sensory integration. I mentioned the difficulties we had later with mainstreaming, how he was so tortured by bullying. My voice broke as I talked with her, and we cried together as she told me that she has the same fears for her son. I was awed by the depth of feeling I could share with someone living on the other side of the world.
Moments later, we composed ourselves and went out to the presentation area. Fortunately we were not the first to speak that day. But when the time did come, and we stood in front of all the parents, teachers, doctors, and other attendees, we weren’t the only emotional ones. After I introduced myself and talked about my experience with my son, pausing often for translation, I said this to them:
“We live far away; our lives, jobs, and cultures are very different. But we have one thing in common – our children. No matter where we live, we understand that part of each other’s lives. In the United States we like to say, ‘It takes a village to raise a child,’ meaning that many people are involved in caring for a child and teaching him or her. When a child has autism, that statement is doubly true. It takes more than a village. That is why we are here, from another country, to talk about our experiences and strategies that have worked for our children. Having a child with autism is a tremendous challenge, the biggest of my life. You have other challenges in your life that I do not understand. But in this challenge – autism – we are connected. You are not alone.”
I talked to them for a while, feeling the bond grow deeper with each word that my equally emotional translator conveyed to them. At the end of the day, those who could speak some English came up to me to thank me personally. I was so moved by their gratitude, and their love.
On one of the nights during the week, we had dinner at the lovely home of the parent-founders of the center. In Kathmandu, it is common to see homes with rebar cable sticking up out of the top, as pictured below. Embedded in the foundation, the cables provide the structure for the pillars of each floor of the home. Often, the owners stop building at two floors, but the rebar cables still stick up from the roof, exposed, in case they are able to build another floor in the future. “We call them pillars of hope,” Hem, the father, said with a smile.
I’d like to think of the work that we did in Nepal as a pillar of hope. “You are not only helping our families, you are helping our country,” Hem also said. We weren’t able to be there long enough to build a new floor, but the hope is definitely there.