Where a dad of two great kids (one on the autism spectrum) muses about life.
Thursday, October 29, 2009
Stars and Rain
I recently had occasion to visit China (I was invited to give a couple of lectures there), and took the opportunity to arrange a visit to a school for autistic children, Stars and Rain. Strictly speaking, Stars and Rain isn't so much a school for autistics as much as it is a school for their parents, who come (with their children) for 12 week courses in how to educate their child. There are very few resources for either diagnosis or treatment of autism in China, and Stars and Rain may have been the first school in China for autistics and their parents.
The first person I met when I got there was the Development Officer, Sun Zhong Kai (Scott), who was the person I had corresponded with via e-mail. I had asked a couple of times via e-mail if my visit would be too disruptive, and Scott said that it would be OK. This gave me my first positive impression of the school, as it was more open to visitors than my kids' own school. The second positive impression I got was when I asked if I could take pictures, and he indicated that it would be fine, as long as I didn't take any that showed the children's faces (as the school liked to respect their privacy). A school that was open, and respectful. Not bad, for the first 5 minutes.
Scott's background is that he was one of the first social workers trained in his university in Beijing. He seemed very knowledgeable regarding autism, and had a very upbeat and friendly attitude. He immediately put me at ease. His English skills far surpassed my limited Mandarin, and we communicated just fine, despite the fact that due to a mixup I was without a translator for this trip.
Scott took me on a tour of the facilities, which consisted of about 10 different rooms in a basic but clean building. The teachers (I saw about a dozen of them) were very friendly and energetic. There were also a number of college age volunteers that assisted during the day. The students range in age from 3-12 years of age, though most in this group seemed to be from the younger part of that age range.
Although the school says on its website that they teach using ABA, they only use positive reinforcement, and from walking around and observing, it seemed a fairly loose mish-mosh of ABA, TEACCH, and good old-fashioned one on one instruction. Scott stressed to me that part of Stars and Rain's goal is to change attitudes in China towards autistics. He related that for the first time, the government recently recognized autism as a disability, and provides individuals a (very small) monthly stipend.
Stars and Rain was started in 1993 by the mother of an autistic child, Tian Huiping, with a couple of other parent volunteers and pre-school teachers who had never heard of autism before. Initially it was a residential school for six children, who stayed at the school from Monday-Saturday, then went home for the weekend. As demand was very high (and they lost space where they could stay overnight) the school decided to leverage what expertise it had, and transformed itself into a school where they taught the parents (accompanied by their children) how to educate their children themselves at home. Terms run for three months, with 50 families attending each session.
The school has had visits from some US special ed teachers, and they have associated loosely with the Heartspring organization out of Kansas, USA.
Besides the parent/child instruction, Stars and Rain also runs what Scott described as a "demonstration project", a residential home for six adolescent-adult autistics. This facility is located a couple of blocks from the school. There are about 8 staff that work in that facility, including 3 long term university volunteers (who were from Germany and Indonesia). Education there is focused on daily living skills. The residents go out and about in the community with the staff, and Scott reports that finally, in this location, they have built up a good rapport with the community which supports their presence (this is the school's third location).
All in all, I was mostly pleased with my visit. Although they call themselves ABA based, what I saw was not the strict ABA that makes my skin crawl, but rather a much looser version that seemed to go with the flow of where the individual children were at. The staff is friendly, dedicated, and seems to work very hard. The facilities, although basic by Western standards, were quite adequate, and kept very clean.
Whenever I feel disappointed about services that Buddy Boy isn't getting, or about problems we have, I will always now know that things could be a lot worse. Stars and Rain is doing good work, but because of their limited resources they are limited in how many people they are able to help. They have a waiting list of about two years for their courses at the present time. I encourage anyone who wants to donate to them to send them a little cash via this page. You have to do a bank transfer, but it's not that hard.
Me- Joe, husband of a great wife, and dad to two great kids, who were both adopted at birth.
Liz- My ever understanding wife, who manages to wear many hats (mom, advocate, therapist, teacher) for our kids.
Buddy Boy- Born in 2000. Funny, intelligent, inventive, and autistic. Loves machines.
Sweet Pea- Born in 2002. Typical little sister. Competitive, outgoing, and smart. Loves anything pink.