Stars & Rain: Autism in China

I am finally taking some time on this warm Saturday afternoon (Hangzhou's weather Gods have been seriously confused this week) to write and reflect on my trip to Stars & Rain, China's first non-government educational center for children with Autism. I was lucky enough to make a contact with a recently graduate of Middlebury who is volunteering there for the semester, and she was nice enough to show us (another student Myra and me) around Stars & Rain's kindergarten and group home.

I have to say - I wasn't really sure what to expect the first day Myra and I got to Stars & Rain. Having heard very little about China's approachto Autism, I didn't expect much. I was, however, VERY pleasantly surprised. It really gave me a lot of hope for the future of Autism awareness and "help" in China and especially for Chinese autistic children.

Stars & Rain is divided into two different "schools", both vastly different from each other. I spent my first day at the group home, where my friend Cordelia works. The group home houses around 6-8 students all with pretty severe low-functioning Autism. (I've attached a link to Cordelia's blog about autism abroad at the end of this blog - there will be much more specific information on the center in her blog, but I will do my best to tell you what I remember.) My work with Autistic children has mostly centered on students with Asperger's (a higher-functioning form of Autism --- although there was a very interesting article in the New York Times saying that the Asperger's term may be on the way "out" -- http://www.nytimes.com/2009/11/03/health/03asperger.html -- thanks Alice!) so it was a new experience to get to work hands-on with somewhat lower functioning students.

All the students in the group home are between 10-16 years old and most have been there for a year or more. The group home itself houses these students (sleeping, meals, everything) during the week and then the kids go home for the weekend. The home itself is very nicely set up - there is a workout room, a couple bathrooms, classrooms, sleeping rooms, and all kinds of activities to keep the kids happy and "occupied." From the moment we entered the kids were very welcoming. Part of the benefit of visiting Stars & Rain was that the school was really used to foreign visitors (lots of people come to look around, volunteer, etc.) so for a good part of the day we were really able to work closely with the students - instead of just staying around in the background. A trait of autism is that children lack social skills - for example, they rarely look you in the eye when speaking to you. The students at the group home, however, were more than able to say their names and answer questions, as long as the questions we asked were very direct. Most of them, while speaking in a whisper, were able to communicate with us, in their own way. The kids also enjoyed singing, dancing with us, and just sitting on a chair hugging. That is one thing that I absolutely love about Autism and what it is able to teach us - communication isn't just words and also doesn't need to be.

At the group home I didn't get a chance to visit any classes but instead got to hang out with the students during their time off (very frequent - as their concentration levels aren't enough to work on the same project for thirty or so minutes straight). The other great part of the group home is what the program's plans are for the future. Besides taking the kids for a week long field trip (including flights and hotel stays) the program also is working on a sensory room, as autistic children usually have too little or too much sensory stimulation. The sad part is that there is a LONG waiting list for the school - but there is no more room to house any students. Still - it is a really great positive step for autism in China.

While the group home is more interesting from a volunteer point of view because there is more to do, the kindergarten, in my mind, reflects just how remarkable Stars & Rain is. The kindergarten has eleven-week sessions where both the autistic child AND a parent stay with the child near the Stars & Rain facility for the duration of the program. Myra and I were lucky enough to visit some classes the second day and really got a feel for how the program works and what they're hoping to achieve. I got a chance to sit through the last part of a music class and then a full class. The week we were there was the second or so to last week of the program, so the kids were pretty used to the set up and the format, it seemed, and they sang some songs with hand gestures they seemed to have memorized. Very cute. Afterwards I got to see a class where all the kids and the parents had a series of assignments to complete, all dealing with useful skills - such as cutting shapes in paper, recognizing what colors match with what other colors, and differentiating what one should and shouldn't do during class.

I was most frustrated during my time at the kindergarten because I DESPERATELY wanted to know the kids' stories. When were they diagnosed? How did each of the parents react? I also wanted to ask the teachers about the kids' progress. For example, in one class I sat in on, one child did NOT want to cut paper and instead got very angry at his mother and started biting her hard on the arm, right in front of me. I expected the mom to yell and get angry, but she instead ignored her son's bad behavior and kept working with him to finish his assignments. I wanted to know, what had she done before the program when that kind of thing happened? Was this positive progress for their relationship from a discipline perspective? I wish I had days and days to figure all of that stuff out.

Cordelia had explained to us that the kindergarten, while for the benefit of the children, is really more for the benefit of the parents. The last class I had a chance to sit in on was a "parent teach." Literally, the parents all sat around with notebooks carefully taking notes, while the kids just sat in front occupying themselves. The teacher was explaining to the parents goals for their children (I'm assuming for the future - I missed the first part of the class) such as looking someone in the face upon speaking, etc.

I really liked and was happy to see the positive atmosphere surrounding the kindergarten. I had heard lots of talk before I visited the center about parents wanting to simply get rid of autism instead of dealing with it, but it was so nice to see how positive and encouraging all the parents were. Some parents still seemed to be doing a lot of the work for their children - but they were very active with their children which I think is all we can really ask for, to some extent. Overall it was a really fabulous experience and made me realize how much I a) love working with iautistic kids b) how important programs like these are c) how I want to be a part someday of bringing this recognition to all parts of China. It was a really great experience.
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Phew, other than that things are pretty good. We went to Nanjing last weekend, which was pretty unremarkable. Although we did get a chance to go see the new Rape of Nanjing museum - which was the best part of the weekend but was the only time I felt I really got a chance to understand Nanjing. We spent most of our time on the bus traveling from one place to another. Other than that not much is going on. Classes are moving ahead as usual and we are all trying to make the most out of our final weeks (5! + 1 week of traveling) in China. We are all also finding ourselves anticipating reverse culture shock upon our return to the States. I've been asking myself recently: Will I have any regrets? Have I done everything I wanted to? While these questions are probably unanswerable focusing on them is putting a fire under all our butts to really make sure we get out to see anything and everything we might have missed. For example, tomorrow I plan on going with a couple of friends to Hangzhou's scissors museum. Yes, you read that right. Supposedly Hangzhou has a SUPERB collection of scissors. I will let you know how that goes.

PLEASE check out Cordelia's blog: autismabroad.blogspot.com -- she is really trying to spread awareness about China's progress with autism - and the more exposure the better. Also, if you want to check out Stars & Rain's website it is here: http://www.guduzh.org.cn/Default.aspx?alias=www.guduzh.org.cn/English

As always, love and miss you all.