When humanity beckons

Heartspring shares dreams with autism school in China

Classroom The room is the size of a storage area, with unused desks and chairs stacked against the wall to make space for the 20-30 people who file in. In early March, everyone must wear layers of clothing just to stay warm as the building has no heat. The majority of adults sitting in the wooden chairs have sacrificed much just to be there; their homes, their jobs, their friends and family. Yet if you look around you’ll find people smiling, because for the first time, parents of children with autism in China have the opportunity to learn how to connect with their child and how to have hope. These parents are part of an 11-week training program at the Stars and Rain Education Institute for Autism.

From humble beginnings

In 1989, Tian Huiping, whose American name is Hope, learned that her only son, Tao Tao, had autism. Devastated by the diagnosis, she focused solely on her feelings of helplessness and loneliness. There were no resources available for parents of children with autism in China and her depression was overwhelming. Such strong feelings of sadness and hopelessness have led many parents, including Hope, to consider suicide. It was only when she saw her son look up and smile that she knew she could not be responsible for taking his life, or her own.

Hope and Tao Tao Determined to make life meaningful for her son, Hope found a small brochure printed by the Taiwan Autism Association, explaining a few basic concepts on how to teach kids with autism. In Taiwan children with autism are called “Children of the Stars”. For these special children, like her son, Hope set out to build an educational facility in China that could give them a voice in society while offering them the chance to live a life with dignity. Based on what she had learned in that one brochure, Hope opened Stars and Rain in February 1993. This was the first non-governmental educational program for children with autism in China. The name Stars and Rain is based on a combination of the American film “Rainman” which brought autism into everyday vocabulary in the United States, and the Taiwanese nickname, “Children of Stars”.

Stars and Rain has evolved and reinvented itself in its short history. Initially, the program began as a boarding school where Hope, two parent volunteers and four recent graduates from the Children Education School, all with no autism training, struggled to educate six students. No textbooks or workbooks were available to these pioneers - only a photocopy of the brochure Hope found. Today the school has developed into an organization providing professional-standard training for parents of children with autism.

Stars and Rain is dedicated to improving the quality of life for children with autism and their parents within China. This is achieved by training the parents rather than the children. According to their website, because of the inadequate provision of care for children with autism in China, it would be impossible to directly educate more than a fraction of the children with autism living in the country. Therefore, the focus is on giving parents the skills to educate their own children through a three-month residential course in Beijing.

Despite many struggles and much opposition (aggressive neighbors forced the school to move six times in its first 10 years), Stars and Rain celebrated its 15th anniversary in 2008. Parents who have completed the training have initiated over 60 affiliate programs, helping to further the reach of autism assistance in China to over 3,000 children.

Finding a friend

Heartspring first learned of Stars and Rain from parents of a student who attended the Heartspring School. As Chinese-Americans, they relayed to school administrators that they had also considered Stars and Rain as an alternative to Heartspring. Dr. Gary Singleton, Heartspring President and CEO, contacted Hope to learn more about her program and to extend a hand in friendship and support. In 2004 he traveled to Beijing as part of the China-U.S. Conference on Educating Students with Special Needs. There he presented Hope with the prestigious Shaklee Award, now known as the Heartspring Award for Innovation and Creativity in Special Education, in appreciation of her work with children with autism. Since that time, Heartspring and Stars and Rain have formed a collaborative relationship challenging, encouraging and sustaining each other as sister schools.

Each year, three different members of Stars and Rain travel to Heartspring to observe and train with teachers, therapists and specialists. This effort began in 2005 as a way to give teachers from Stars and Rain ideas and programs to implement upon their return to China.

Sharing dreams

In March 2008, four members of the Heartspring family traveled to Stars and Rain, marking the first time Heartspring specialists have trained at the Chinese school. Along with Singleton and Heartspring board chair, Jim Wong, Connie Coulter, director of CARE and autism outreach and Lindsay Randle, director of school therapy, set out to learn more about autism in China and share their knowledge with the teachers at Stars and Rain.

Connie Coulter For 10 days, Coulter and Randle’s schedules were filled observing classes, presenting to teachers and answering questions from parents; all of whom were eager to learn. During that time Singleton and Wong worked closely with Hope reviewing the business and organizational aspects of Stars and Rain. The executives from Heartspring also spent a great deal of time learning more about Hope’s journey over the past 18 years, recording several videos of her recounting her days as a mother struggling to make sense of autism in a country where her son didn’t seem to count.

In preparation for their visit, Coulter and Randle sent out a needs survey to the teachers in Beijing, hoping to get a better grasp on what was expected of them. “Honestly, (I expected) to help answer questions the teachers had. Since they didn’t have resources, we sent a needs survey. That didn’t prepare me for the questions and level of support they wanted,” said Randle. “The first three days were extremely intense. Our days lasted 12-15 hours, talking autism and constantly planning.” Brainstorming sessions typically lasted well into the night for Coulter and Randle.

The level of teamwork was especially meaningful for the staff from Heartspring. “As a professional, when you’re stretched so far outside what for you is normal, you can collaborate with another professional and leave yourself open to share without judgment,” said Coulter.

“What was great was it was less than 24 hours from discussion into tangible idea,” said Randle. “We felt perspective, energy and motivation so intensely.”

Surprisingly for Randle, the concerns, challenges and successes of parents in China did not vary much from those of American parents. “If we can help children in China, they help us to better problem solve for our kids here,” she said.

Coulter’s belief that autism is a universal disability was confirmed while in China. “Autism is autism,” she said. “Their kids are just like ours. What is special is that these parents brought out a passion in me – it opened up an area in me that will make me better at what I do.”

Lindsay Randle For Randle, eliminating any preconceived notions of Westerners was important. “We actually gave them a different view of who we were as Americans while helping them to expand their box,” she said. “You could feel the energy. It was palpable. Watching the staff process and apply the information we shared was magic.”

One area of much concern was the logistics surrounding the introduction of new models and strategies, including Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH) to Stars and Rain, who had previously only utilized Applied Behavior Analysis (ABA) to work with their students. Coulter and Randle researched the layout of Stars and Rain’s facility and created a new diagram, altering room usage to benefit a variety of programs. This helped create functional use of all spaces to allow teachers, students and parents to learn from large group environments, one-on-one rooms, quiet/sensory areas and discrete trial spaces. “The teachers only saw rooms as classrooms. We opened up two new spaces that could be used for different skills; recreation and leisure, interventions, social skills, fine motor skills, snack time - kids will be able to remain engaged while parents are away with other teachers, making more efficient use of the time and space,” said Coulter, who, along with Randle coined this as their ‘Ah ha’ moment.

As a result of the changes Coulter and Randle helped implement, Scott Sun, development officer at Stars and Rain, thanked them by saying, “You just gave us our dream.”

In return, dreams were also realized for the Heartspring staff. “For us, they gave us our professional dream of sharing our knowledge and have it really make a difference,” said Randle.

Being able to put their experience into words proved extremely difficult said Coulter and Randle. “It taps into an area of my brain I didn’t know existed. It made us better at what we do. I’ve never been a part of something that was much bigger than us just going to China,” said Coulter.

“It was the most amazing experience, positive experience of my life,” said Randle. “You feel like they’re family. It was so hard to leave. I felt like I was leaving my family. It was that level of emotion for 50 people. You can’t find the words.”

A future without loneliness

The Chinese word for autism translates as the disease of loneliness. For many years parents in China felt very much alone in their search for a better life for their children. It is at Stars and Rain where parents are no longer alone. They are supported by others who share in their situation. It is Heartspring’s privilege to be a part of such an organization. “Our trip to China was life-changing, inspirational and sobering,” said Wong. “When one hears so many stories of parents who have contemplated suicide (to include their only child), in a country where ‘normalization’ is the watchword, one cannot help but want to jump in with both feet. It’s difficult to stay objective when humanity beckons. We shared a lot of tears, both happy and sad.”

Students
John Lennon

Heartspring’s founder, Dr. Martin Palmer, was very involved with international organizations, providing outreach to children with disabilities. He was a consultant to the World Health Organization, sharing his training and expertise around the world. During the 1940s, 50s and 60s, Heartspring was a destination for many foreign dignitaries and similar organizations were established in India and Japan which still exist today (some under new names).

After Dr. Palmer’s passing in 1965, the international focus at Heartspring was lost. Over the past four years that focus has returned. “Heartspring is now in a position where we can once again reach out to pioneering programs around the world,” said Singleton.

Three more teachers from Stars and Rain are scheduled to arrive at Heartspring in October. At that time, teachers from India’s Open Door School and Action for Autism will also travel to campus, introducing further opportunity for international collaboration. Plans are being made to expand the same chance for other Heartspring staff to travel to Stars and Rain in the spring.

Heartspring will return to China next year as the primary presenter at a national conference with affiliate programs of Stars and Rain.

For Singleton, this trip to Stars and Rain offered him a new sense of significance. “Perhaps we changed the course of history for a few people and for a few children in a distant land,” he wrote in his blog upon their return. “Certainly we made life long friends, and most of all, our lives were changed forever. It was an experience of sharing, of discovery; it was a life changing event, difficult to articulate but profoundly present in each of us. It was a journey on a road not often taken and never to be missed.”