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.


farmwifetwo said...

The "ABA that makes your skin crawl" is the "pd directly by the Prov gov't" one offered via the Ontario Children's Hospital's. The loose based one's is the "find your own, pay with Prov gov't money" one's. Discussing it with others, I wish I had had access to the 2nd. The first was horrible and I've made a pt of lobbying against it and lobbying for proper regulation of ABA style therapy for children in Ontario.

Services could always be worse, but I still think in the end a child's #1 teacher should aways be their parent. Which is why I'm pls'd and impressed that parents are taught in this school. Here we always seem to be set aside as being unable to teach them ourselves. Which we all know is a lie.

Mrs. C said...

What an awesome opportunity, Joe!
I have a feeling that in most places, very strict ABA and that sort of thing isn't really done, though I remember declining sending my child to a special ABA school because I didn't think I could implement those practices at home. I know if my son were an only child or one of two or three kids I may have done things quite differently.

I am *assuming* that China is still generally one-child only and I suppose that helps the parents concentrate their resources on that one child.

Club 166 said...

China is "generally" one child only allowed, but they have made some modifications to that policy recently.

If both parents are only children, then they are allowed to have two children.

The Chinese population is ethnically 90% Han, and the remaining 10% is spread across 55 different minorities. If your family is one of those minorities, then you are allowed two children.

If the first child is disabled, then they are allowed to have a second child. This is important for two reasons. First, because the family is still the primary social resource for disabled individuals. A second child could presumably serve as a resource to assist the first. Secondly, especially in rural areas, there has been a tendency for infanticide to occur if the first child is disabled. This policy takes some of the incentive away from that.


Niksmom said...

What a fascinating post. I imagine the trip was incredible in so many ways. I have to agree with farmwife on the point about including the parents in the teraching/training. If only...if only. *sigh*

Marla said...

Very interesting. I remember seeing a special somewhere on t.v. about a school like you describe. I too don't care for ABA even though that last school M went to they did a lot of it.

Amazingly enough we still don't have services here. I had made a call today for some child support paper work I was supposed to have done a week ago. The woman I talked to said it showed M was getting services since last March when I applied. Ummm...yeah, right. Should make for another interesting and annoying phone call tomorrow. I can only handle one call per day in regards to M getting services. It about sends me over the edge.

I am so glad you had this great opportunity.

Club 166 said...

I will probably never get back to China again, so this was a unique opportunity for me.

The trip was only 7 days, which meant two days traveling, two days at my conference, and 3 days for seeing the sights. As soon as I accepted the invitation to speak, I started looking up things about autism in China. I'm not sure if I got this school's name originally from a Kristina Chew post, or from Googling, but it looked interesting.

I had a look at the website, as well as a
trailer of a documentary made about the school (perhaps that was the movie you saw, Marla).

There were only two things I really wanted to do while I was there-walk on the Great Wall, and go visit this school. Anything else was extra.


Casdok said...

Must have been a fasinating and very interesting trip. And as you say a good reminder of how well off we really are even though we may not think so.

Club 166 said...

1.3 billion people in China means that there are a lot of autistics that aren't having their needs met in any way, shape, or form.

I'm glad that there is a spark present there, and hope that the fire spreads.


Stephanie said...

Excellent post! Thanks for sharing your experiences.

When studying cultural diversity and looking at some of the practices in China, I wondered how they provided for (or didn't) their population with special needs. There seems to be very little talk about that.

But this is encouraging! I did notice that the location was Beijing. Unfortunately, that implies that services are probably minimal or non-existent in the rural areas of China.

- autism abroad - said...

Hi Joe! Did you visit the Stars & Rain group home during your visit to Beijing? If so, I think I remember meeting you! I was (and still am) the American volunteer at the group home, wearing the UCLA sweatshirt. What a pleasant surprise to stumble upon your blog during my Google search for "autism in china, stars and rain"! I am currently still in Beijing, still volunteering at the Stars & Rain group home. When you get the chance, please visit my blog: So glad to read that you had an enjoyable and interesting visit to Stars and Rain. Nice meeting you!