autism abroad

Happy Autism Awareness Day!

2011-04-02T09:40:00.014+08:00

April 2nd is World Autism Awareness Day! How will YOU celebrate?

Click here for events worldwide.
Click here to see photos of prominent buildings all over the world Light It Up Blue! Absolutely stunning.

Children with autism and their families have made a huge impact on my life. To all of you, THANK YOU. You inspire me.

Below are some photos that are especially meaningful to me:

Meeting Temple Grandin!

Blue balloons at a collaborative preschool I work at.

Some amazing kiddos that I've been fortunate enough to meet along the way.

Camp Winston, where it all began.

Some great friends and self-advocates.

And last but not least... I am selling printed T-shirts (design below!) to raise money for the 2011 Walk Now for Autism! Min. donation is $12 per shirt. Please contact me if you are interested.

And the Emmy goes to...

2010-09-02T12:52:00.005+08:00

TEMPLE GRANDIN!

It was a big night for television, and an even bigger night for autism awareness last Sunday 8/29 at the 10th Annual Emmy Awards. As someone who has read Temple Grandin's books, has been inspired by her story, and believes in her cause, I was so excited each time the film won an award. I was especially touched every time Temple was featured on camera and during the last acceptance speech, when Temple was on stage and her mother was asked to stand in the audience.

Temple Grandin won the following awards:

Supporting actress, Julia Ormond
Supporting actor, David Strathairn
Lead actress, Claire Danes
Director, Mick Jackson
Outstanding Made for Television Movie
Best Music Composition
Best Camera Editing

It is a film definitely worth watching, if you have not already! To learn more about Temple Grandin the film (and Temple herself), click on these links to stories by Deadline Hollywood and Emmys Blog, or visit Temple's website.

Temple Grandin and Claire Danes, who plays her in the film.

Arte Autismo

2010-06-03T10:01:00.010+08:00

It's been quite a while since I last blogged... but this particular post is long overdue. Two months ago, I received an e-mail from Ray, a mother of a young man with autism, Filipe. Ray and Filipe are from Rio de Janeiro, Brazil. Ray had come across my blog, and my post about autism in Singapore - specifically the "Pathlight School" post - caught her eye. "The ideal school", she wrote, "If only it were that way in Brazil. It would be wonderful."

Ray has her own autism website, www.arteautismo.com and a blog, called O Blogo do Arte Autismo. She had blogged about my visit to Pathlight here, and even borrowed some of my photos, which I found very flattering :) I'm not too familiar with Portuguese, but with the help of an online translator, I was able to read her post and a little message to me at the end:

Cordelia, amei conhecer seu trabalho, realmente fiquei espantada com a qualidade de Pathlight. Parabéns por nos mostrar tudo isso e por estar preocupada em dar o seu melhor para eles.

Um beijo.
Ray.

Cordelia, I loved learning about your work, and I was truly astonished with the quality of Pathlight. Thank you for sharing this with us, and for taking the time to make things better for them (children with autism).

A kiss.
Ray.

In her e-mail, Ray told me that her son began to paint, which made Ray so happy that she began to share it online with others. She hopes that he can make enough money from donations and from selling his artwork at exhibitions to eventually become self-sufficient. She writes,

"Cordelia I've fought for my son with autism. With much effort my son started painting.
I was happy and I made a website and a blog. We moms do not live forever. I wanted to make a request: You can do a post on the painting of Filipe? The more know what he does, will help a lot. You can do this my dear? A big hug."

I was so touched by Ray's e-mail, her blog post, and her story. Posting about Filipe's beautiful artwork is the very least I could do. These are just a handful of my favorites of Felipe's creations:

I love how the colors change from bright and vivid to soft and soothing. You can tell from the brushstrokes that a lot of hard work has been put into creating these pieces. Click here to check out Filipe's online art gallery, and to see even more gorgeous paintings!

Ray, I am inspired by your story, by your son, and by parents like yourself. Thank you for getting in touch with me, and I hope many others will learn of and be inspired by you and Filipe.

Filipe, the artist

Filipe & Ray
Rio de Janeiro, Brazil

China's first autism teacher

2010-01-14T06:09:00.008+08:00

Before I left Beijing, I was lucky enough to get the chance to sit down and chat with Bo Laoshi (Holly), China's first autism teacher!

She told me that she was there, alongside Tian, right from the beginning. Bo Laoshi was interested in becoming a special education teacher, and at the time (1993), was a student at a university in Beijing for special ed. Tian visited their class to ask if anyone was interested in teaching children with autism. Bo Laoshi had never heard of the word "autism" before. It was so fresh and interesting, and she was intrigued. She realized that she could try to make an impact in this field that was so new and strange to many.

That weekend, Tian and Bo Laoshi got together to set up the first Stars & Rain classroom in the basement of a local kindergarten. They had one student: a six-year old boy. Bo Laoshi thought he was absolutely beautiful. He was also just so honest and sincere. The team started with four teachers: Tian, Bo Laoshi, and two other special ed teachers from the university. Shortly after they started, however, the two other teachers left. Apparently, their families objected to their working there. It wasn't secure enough. Salary, housing, and future opportunities remained unclear. So, only Bo Laoshi and Tian remained.

Tian had learned some teaching techniques from overseas (Taiwan, Hong Kong), and she shared everything she knew with Bo Laoshi. Bo Laoshi also applied what she had learned from her college classes and realized what worked and what did not work by trial and error. Every week, they changed their schedule, classwork, and teaching methods. Pretty soon, they had 6 students. In 1996, they learned about ABA (which is the method currently used at Stars & Rain). They realized that what they had been doing all along was actually ABA-esque! Cut to present-day... Stars & Rain has 20 teachers and many trainees, serves 50 families directly per term (with 4 terms per year), organizes outreach and training programs for other teachers and parents, and has opened a Group Home for teenagers with autism :) Read more about Stars & Rain's history here.

I asked Bo Laoshi how society's view of autism has changed since she started working in this field in 1993. She said that back then, nobody knew what autism was or what she was doing. They thought children with autism were orphans, were stupid, or had "brain damage". Many people also thought that the parents of children with autism were being punished. Since then, many people have gained knowledge about autism from the Internet or the news. Now, many people believe that parents of children with autism are often very well-educated (see this article on The Geek Syndrome).

Bo Laoshi believes that autism in China continues to be a "society problem". Resources are so scarce for people with disabilities. Chinese society is slightly more accepting to the hearing and visually-impaired because they can easily understand their disabilities and have some idea of how to help them (e.g. You can help someone who is visually-impaired cross the road, you can use sign language to communicate with someone who is hearing-impaired). However, many people find it difficult to accept autism because they don't fully understand it or know how to interact with people with autism. So, they reject these children and prevent them from entering their world and playing with their own kids. The behavior problems that often accompanies autism scares people off. These children can't communicate or play with others. Parents of neurotypical kids worry that their kids will pick up these "bad" behaviors, so they keep them away. "These kids will influence my child's development and learning in the classroom" is a common fear.

Bo Laoshi then told me that parents also have a difficult time accepting their own children with autism. They are ashamed to ask for help from neighbors or friends. They believe that problems at home should be kept at home and not shared with others ( 家丑不可外扬 , similar to "don't air your dirty linen in public"). Apparently, one should only share good news with others. Some parents don't even take their kids out of the house or tell others that their child has autism in order to "save face"! It is fairly easy to hide a disability when a child is young, but as the child grows older and more different from other kids, the pressure to conform becomes even greater.

Furthermore, due to China's one child policy, parents put all their wishes and expectations on their first and only child. Technically, they can have another child if the first has a disability (or is a girl...hmmm). However, many parents choose not to have a second child for fear of having another child with autism. Interestingly, many parents who do decide to have a second child hope and pray that it is a girl. They believe that 1) girls are less likely than boys to have autism (the ratio is 1:4, I believe), and 2) a daughter could help take care of her older brother with autism. This was the first time I have heard of couples in China who actually wanted to conceive a girl :)

I learned a lot from chatting with Bo Laoshi and I'm so happy that I got to meet her. Please let me know if you have any questions for her or if you would like to contact her directly.

David's thoughts

2010-01-07T11:38:00.005+08:00

David is a family friend and a father of two teenage boys with autism. I told him about my blog and he had some comments that I wanted to share:

Sad to say, your Special Education in China section could have been written about the United States. Autism is the disability du jour in this country. Autism has been the cover subject of every type of magazine and the subject of countless news shows, but the focus is always on cute irresistible little kids who win the heart of all viewers. But autistic kids don't die before they reach adulthood, their behavior just becomes less "cute" and excusable to the general public. There is no place for them to go as adults. Group homes have waiting lists of years. The biggest nightmare of every parent of autistic children I know is the knowledge that after the parents die or become incapacitated by old age, the autistic child is doomed.

David's sons on the cover of Newsday

Beautiful Minds

2009-12-31T13:26:00.005+08:00

Before I left Pathlight that day, I was given a little goodie-bag containing an ARC booklet, Pathlight pamphlets, and a little book titled Beautiful Minds.

Beautiful Minds is a collection of handwritten journal entries and sketches by students from Pathlight School. Ages range from Primary 1 (1st grade) to Secondary 3 (8th grade). I have yet to finish the book, but I've already found some very sweet pieces that I wanted to share:

Dominique, Primary 1:

I will try to remember to leave one finger space between two words.

Anonymous, Primary 4: "Why I like Pathlight"

I am happy that I can go to school again. The teachers at Pathlight are kind and encouraging. They are patient and make no demands when I am stressed. At my previous school they were angry all the time. Their shrill voices hurt my ears so much that I would be in tears. Sometimes I screamed so that I could shut out the noisy surroundings.

My classmates are not as noisy as in my other school. I like them as they are not so demanding. I can speak if you give me time to respond. PE is fun and OT gives me a break. I wish I have music class.

When it is quiet I am calm and I can think and organise my thoughts better. I look forward to being able to do more for myself.

Syafiq, Primary 4: "My Favorite Show"

Today was the funniest day of my life. I was watching George of the Jungle. It was so funny that I threw back my head and laughed. Even when the moron (who is the bad guy) fell into the elephant poo. Well George was kind of like a tarzan, except that he banged and smashed into trees. That is why we always sing "George, George, George of the Jungle as smart as he could be. Awwhaawaaaa! Watch out for that...BANG! Ooh tree." It was my favorite show of all. In the end, he married his girlfriend. Ursula, and got a baby son. How cute! As for the "moron", he got kissed by an ugly ape (yuck).

Today marks the last day of 2009. It has been a memorable year, full of unexpected events and wonderful people that have come into my life. For this, I feel very blessed. Looking forward to making more memories in 2010. Happy New Year!!

Love,
Cordelia

Pathlight School

2009-12-29T12:01:00.012+08:00

My visit to Pathlight School, the first autism school in Singapore, was even better than I had expected! As I mentioned earlier, Pathlight is a beautiful place, in many ways:

Pathlight moved to its new location 6 months ago. The new building is gorgeous!

Pathlight School is also home to the main office of Singapore's Autism Resource Center (ARC).

One of the two main courtyards between classrooms.

The other main courtyard. Apparently, the architect of the new school studied what might be aesthetically pleasing to people with autism and created simple, structured, orderly designs.

Pathlight's vegetable garden.

Vegetable garden.

Courtyard

Courtyard

Pathlight Cafe, the cafeteria, where older students (13 and up) help to prepare the food.

Some food stations.

Western food & drinks

Singaporean food

Step-by-step visual instructions (children with autism tend to be visual learners) at every station for preparing food and cleaning equipment. They practice following detailed instructions and working independently to prepare for employment.

The new bakery! Students come here to learn how to make pastries and cakes. Classes are taught by a professional baker. The students hope to sell their creations to the general public in the near future!

DJ station in the lunch/break area. Students can send in their music requests and dedications to older students who DJ!

One of the many classrooms.

Pathlight is situated between two public schools. During lunchtime, the gates between the schools are open to allow students to mix & mingle. Although it is difficult for children with autism to interact socially with their typically-developing peers, the physical intermingling facilitates these exchanges.

The gate between the two schools.

The P.E. area

Turf field

Early Intervention Program (EIP)...for the little ones. Lots of stations to do a variety of fun activities. They even had a huge gym room for gymnastics class, taught by a pro gymnast.

EIP area

Hanging on the wall in the EIP area, a reminder to use people-first language.

Pathlight Library, where the glass doors are decorated by students' sketches & cartoons.

Pathlight Store, where students' artwork is printed onto t-shirts, made into journals and post-its, framed, and sold! Proceeds go directly to the student designer. This encourages those who have a passion and talent for art to pursue this as a career.

Pathlight Store. Products can also be purchased online at the Pathlight eMall.

Here are a few interesting things I found out about Pathlight during my visit:

The student-teacher ratio is 1:6. Teachers must go through a highly selective interview process. Special skills teachers (art/design, gymnastics, baking, IT) are professionals in their field who have been trained to worked with children with autism.

Most children who enter Pathlight at age 3 or 4 are non-verbal. They learn to use the Picture Exchange Communication System (PECS). Most students are verbal by the time they enter Primary 1 (1st grade). For those who continue to be non-verbal, the key form of communication is writing.

Every experience, inside or outside the classroom, is a learning experience. The focus: normalization and dignity. The curriculum is exactly the same as that of other public schools in Singapore, however, instead of taking a second language (Chinese), students take a social skills class. Pathlight students are taught social skills not to become just like other children, but to learn the skills necessary to function, live and work cooperatively with their neurotypical peers. They are not forced to become "normal". Once they learn the skills, they have a choice about whether or not they want to integrate themselves. Without the skills, they have no choice.

More on social skills and "normalization": Students are taught not to control their emotions but to control the expression of their emotions. For example, crying out loud in class is not OK. Excusing yourself to cry in the bathroom is acceptable. Also, harmless stereotypies are acceptable. For example, hurting yourself and others or destroying property: not OK. Arm flapping: OK.

Pathlight has several "buddy schools" that participate in exchanges with Pathlight. I was told that there are three categories of neurotypical children: 1) They are over-forgiving and over-accepting, which is not good. 2) They tease and reject them - also not good. 3) They provide a balance of being kind and accepting, but also honest and sincere. This group is ideal for children with autism. Mutual acceptance is key - Pathlight students also have to accept and try to understand their neurotypical peers!

When Pathlight first opened, about 70% of students went on to attend a public school after a few years with the Early Intervention Program. Now, only 50% of students go on to other schools; half stay at Pathlight until age 18. This is due to parents' decreased desire for their children to become "normal", as well as their greater appreciation of and desire for Pathlight's educational model.

Children with an IQ of less than 70 attend Eden School (formerly known as the Singapore Autism School).

Students participate in after-school activities and summer camps that teach them sports such as rollerblading, archery, and kayaking!

Pathlight also puts a lot of effort towards empowering caregivers. Like SPD, Pathlight takes the Family First approach.

My visit to Pathlight School truly was a wonderful experience. Everybody I met there was so warm and friendly, and very happy to tell me more about Pathlight. Unfortunately, I didn't get to meet any students since school was out for winter break. Still, it was nice to meet some staff members and to take a look at the facilities - aren't they amazing?

To learn more about Pathlight School, please take a look at their website.

Helen's thoughts

2009-12-26T18:30:00.006+08:00

I hope everybody had a lovely Christmas with friends and family. Just a few more days to go 'til we're ringing in the new year!

I wanted to expand on my last post about autism centers in China by sharing with you a note from Helen. As I've mentioned in earlier posts, Helen was responsible for my coming to China to volunteer in the first place! Helen had volunteered in China after college and met a child with autism who changed her life - Zhang Ge. Now a professor of Special Education, Helen continues to work to improve the lives of families with autism in China. She is a true expert in the field and an inspiration to many, myself included :) Thank you, Helen, for giving us a nationwide perspective on autism in China!

Helen writes:

Thanks to Cordelia for letting me share my thoughts here. While setting up this volunteer opportunity for Cordelia in China, we talked about three different options. These were three of the better known programs for children with autism in China—2 in Beijing, and 1 in Shanghai. For a variety of (good) reasons, Cordelia ended up at Stars and Rain in Beijing, which is one of the first programs for children with autism in China. It will always be one of the first, but it’s by far not the only one. Probably that and one other one, a public program in Nanjing, can both take the credit for being first, as they started almost at the same time, though the Nanjing one had started working informally with kids with autism by the late 1980s). And these days, it remains the most famous one, which means a lot of attention (and $$) go to it. Which is great for Stars and Rain, but makes me worried for other programs.

So I am grateful to have the chance here to talk about other autism programs in China, and hope readers might become intrigued and seek out opportunities to volunteer at or help other programs.

The number of autism intervention programs in China today is not a known statistic, but easily is in the hundreds—Guangzhou city alone, as of January 2008 was said to have 50 autism organizations. If you do a search on baidu (“Chinese google”) for autism, you get so many autism organizations, all over the country… Jiangsu, Henan, Hubei, Guangdong, Jiangxi, Shanxi, Shandong, etc. This phenomenon of sort of an explosion in the number of programs seems to have happened especially since the early “2000s” (2000, there still did not seem to be very many, by 2003, I was hearing of more and more, and by 2007 and on, I simply could not keep track of or keep up with the numbers!).

It is very exciting to see that autism intervention programs are popping up all over the place. Many are started by parents of children with autism, just like Stars and Rain. These are parents (often mothers) who find that there are no appropriate services for their children in their home cities or towns, so they start a program themselves. They seek information from the internet, from other programs, and do the best they can to provide effective intervention.

There is a challenge at all programs in China which is the lack of enough effective teacher training. This is much less of a problem at Stars and Rain because everyone knows about it and so all kinds of experts (often foreign, non-Chinese) want to go there and give lectures etc. But all over China, hundreds of other programs are in desperate need of appropriate and effective teacher training, so that their teachers can appropriately serve children. Part of the problem is costs—it costs $$ to bring in these professionals, these experts, and these programs do not have the grants or support that more well-known programs do.

It also takes time to build up relationships with professionals, both from China and around the world, and Stars and Rain got off to an early start. It’s a wonderful place and I have been fortunate to know them since their early years. But now other organizations are out there, and families MUST have support and intervention/educational opportunities from more than one centrally located private organization. One organization is simply not enough to serve all of the need that is out there. So the phenomenon of hundreds of programs opening brings optimism… but they need help, and part of that is what I am doing here, I hope—getting the word out that they exist! So if any readers are planning to be in China or would like more information about how to help other programs (whether in Beijing or other) cities, I hope you will contact Cordelia or me. (thefiveproject@yahoo.com) I would be happy to connect you with these other programs who are desperately trying to serve children (and young adults) with autism, and need more information, resources, and support.

Angel Wings

2009-12-24T17:56:00.006+08:00

My visit to Pathlight School yesterday was nothing short of amazing :) Pathlight is a beautiful place, in many ways. I took lots of notes & photos and will be writing about it shortly after Christmas. In the meantime, I wanted to share an e-mail I received from two teachers at the Anshan Angel Wings Center for Children with Autism.

I met them during my trip to Nanjing. They had heard from a family that Helen would be in town for a few days and they wanted to meet her! During the meeting (which I got to join in on), they told Helen about a school they recently founded for children with autism in Anshan, a small city in northeast China. They even showed photos and video clips of the students and staff!

They made me realize that there are actually quite a few autism centers all around China. Because Stars & Rain has been fortunate to get some publicity, many people (especially foreigners) think it's the only one that exists. Having volunteered at Stars & Rain, I understand how much support it (especially the group home) still needs from volunteers, autism experts, and financially. But what about lesser-known schools in smaller villages in the middle of China, like Anshan Angel Wings? It’s wonderful that they even exist (providing services for families that can’t afford to travel to and work in big cities like Beijing), but unfortunately they are much harder to run. Anshan Angel Wings, in particular, caters to less-fortunate families who are not able to pay as much as others.

Like Stars & Rain, the teachers at Anshan Angel Wings have learned an important lesson: autism centers in China cannot depend solely on foreign experts to provide information about autism. Teachers and caregivers in China must become experts themselves and share what they've learned with others in need.

I was very touched to see the dedication of these teachers. They are so selfless and have huge hearts. I exchanged e-mail addresses with them and, days later, they wrote me a very thoughtful e-mail, inviting me to visit their center in Anshan. They offered to pick me up from the closest airport or train station (hours away from their center) and arrange a homestay for me. I'm no teacher, no expert, no professional... but it didn't matter to them. They just wanted me to take a look at their center, meet some kids, and spread the word.

Unfortunately, I had to tell them that I wouldn't be able to make it this time - I was exhausted from traveling, weeks away from leaving China, and wanted to make the most of the little time I had left at the Stars & Rain group home. They replied that they were disappointed but understood, and that the invitation was always there. Not long after, they sent me another invitation, asking if I had found time to visit. It really broke my heart to say no. I just received another e-mail from them this afternoon. They wanted to wish me Merry Christmas! Here it is:

尊敬的若老师您好！

从南京回来之后，给我们的感触颇多，您在大洋彼岸依然对中国的孤独症儿童给予莫大的帮助，而我们天使之翼，作为从事孤独症儿童教育康复训练的教师们，更应该为这些孩子们而努力。

在圣诞节即将来临之际，我代表鞍山天使之翼孤独症儿童培训中心祝你及您的家人圣诞快乐！

鞍山天使之翼孤独症儿童培训中心

2009年12月23日星期三

Dear Ms. Ross,

After returning from Nanjing, we were left with many impressions of you. You are on the other side of the Pacific Ocean and yet you still care so much for children with autism in China and want to help them. We teachers at Anshan Angel Wings have been inspired to work even harder to serve our children.

On this Christmas Eve, on behalf of the Anshan Angel Wings Center for Children with Autism, I wish you and your family a very Merry Christmas!

Anshan Angel Wings Center for Children with Autism

Dec. 23, 2009

I couldn't ask for a more heartwarming Christmas letter :)

Merry Christmas to all! Wishing you and your loved ones a beautiful day.

Love,
Cordelia

Kim Peek, 1951-2009

2009-12-24T14:10:00.004+08:00

Sadly, Kim Peek - an autistic savant known as the "real Rain Man" - has passed away in his home. Peek's incredible memory skills, paired with his severe disabilities, inspired the Oscar-winning film Rain Man, which starred Dustin Hoffman and Tom Cruise.

"Kim taught us something about human potential beyond what most of us can even imagine let alone explain."

- Deseret News, Peek's local paper

"His legacy can be summed up in one word: inspiration."

- Darold Treffert, a psychiatrist who was close to Peek and advised the makers of Rain Man

"I was absolutely flabbergasted. I could not get this man out of my mind."

- David Morrow, Rain Man screenwriter, said of his meeting with Peek

"His gift to the world was that he was a source of hope to others wherever he went."

- Neurologist Elliott Sherr, with Peek at the time of his death

"You don't have to be handicapped to be different. Everybody is different."

- Kim Peek

To read the full article online, please click here

Singapore's first autism school

2009-12-22T23:28:00.008+08:00

Tomorrow, I will finally be making my much-anticipated visit to Pathlight School, Singapore's first autism-focused school!

To give a very brief overview...

Pathlight was opened in Jan. 2004 (with support from the Ministry of Education) and is known to be one of the fastest growing and progressive special schools in Singapore. They grew from 41 to 500+ students in 5 years.

Pathlight offers a blend of Singapore's mainstream academic curriculum with life readiness skills (social, self-management and communication skills) for students aged 6-18 with autism and related disorders.

The Pathlight School curriculum is based on this model:

In addition to the usual academic subjects, they also offer subjects such as social skills, daily living skills, leisure skills, project management skills, gymnastics, language skills, etc.

Their educational philosophy also encompasses inclusion in the community. Therefore, students are also encouraged to get involved in extracurricular activities, such as: golf, floor ball, IT Music, inline Skating, percussion instruments, and developing board games.

Unique features include:

A rigorous teacher selection and training process
Individualized education planning
Curriculum blending mainstream subjects and life skills
Strong integration programs with mainstream buddy support for autism-friendly learning
Personal intensive support for autism-friendly learning

Who benefits from a Pathlight education?

For some children, early on in their development, a short and intensive stay in Pathlight School’s Preparatory Track will better equip them to cope in the mainstream primary school environment.
For students who are suitable to pursue the GCE ‘O’ and ‘N’ Level examinations, but face challenges in academics, social interaction and communications in a typical mainstream school, Pathlight offers an alternative education which provides autism-friendly accommodations.

No child who is assessed to be suitable for a placement in Pathlight School is rejected because his or her family cannot afford it. In fact, about 40% of Pathlight's students are from families earning below average incomes. Read more about Pathlight School's values here.

Last day photos

2009-12-22T02:52:00.006+08:00

I was just looking through some pictures of my final days at Stars & Rain and thought I'd share a slideshow of some of those photos. I miss these kids so much...

Lunch with Eric Chen

2009-12-20T19:04:00.013+08:00

I had a great time meeting and chatting with Eric Chen yesterday over lunch. Eric is a young man living with Asperger's or "high-functioning autism" in Singapore. He has done much advocacy work (he's written 2 books and is working on a third) and is currently developing several projects related to autism awareness and self-healing. He is a motivated, exceptional guy and I am so happy to have met him. Coincidentally, our meeting also fell on Eric's 27th birthday :) Happy Birthday, Eric!

I had prepared a few questions that I wanted to ask him, but our conversation lasted for several hours and topics ranged from autism and Asperger's to education, politics, the economy, and our (humankind's) future! We covered way too much for me to write everything down here on my blog... but I wanted to note down a few very interesting things that Eric shared with me:

I asked Eric to tell me a bit about his childhood, living with Asperger's. He described his experience as a dreamlike state, as if he were sleepwalking. He did what he was told by his parents and his teachers, but he was not aware of himself. He was therefore able to tolerate all the bullying at school. During primary school (elementary school), with the help of his mother and teachers, Eric became more and more self-aware, which was great, but unfortunately he also began to understand the people had intentions - for example, bullies have bad intentions, they intended to hurt him - and was therefore very hurt by this knowledge.

During our conversation, Eric continued to refer to neurotypicals as "Earthlings" or "humans on Planet Earth". He sees himself as very different and very separate from us. I wanted to know more about how and why he thought of himself as so different. He told me that his thought and thus communication patterns are very different from ours. I noticed that he jumped from topic to topic during our meal, which made it very interesting but also a bit difficult for me to follow his train of thought. He told me that when he first arrived at the restaurant, he did a mental scan of all the faces to see if he could recognize me (from the photo on my blog). Interestingly, he sees shades of colors around some people and can predict what their personalities are like! He also explained that he was taught to make eye-contact while conversing with others, which did not come naturally to him. He had to put in the extra effort to find something on or behind someone's face/head that he could focus on (e.g. a distinguishing feature such as a mole or an earring), which helped him learn to maintain eye contact.

I noticed on Eric's website that he wrote that parents and educators of children with autism should accept that they want to be left alone. They shouldn't force these children to socialize with others. However, in my personal experience, many of these kids and teens want to socialize with others but don't have the skills to do so and therefore experience much loneliness. Eric reminded me that every child and every person with autism is different. Caregivers must understand that while having friends is a good thing, forcing a child to have many friends is not the solution to their socialization impairments. It's not the quantity, but the quality of the friendship. Having one great friend may be good enough. Even a pet can serve as a friend!

We chatted briefly about Chinese culture and the notion of "shame". Eric told me about a time his mother was fundraising for the Autism Resource Centre (where Eric was diagnosed in 2001). Some strangers walked by, saw the word "autism", and remarked, "These are the children of parents who have done something wrong in their past lives!" Luckily, his mother was resilient enough to ignore these hurtful comments.

A few years ago, Eric began to have a series of unusual and remarkable spiritual experiences. They have helped him understand our "neurotypical ways" and socially adapt to them. The experiences have actually motivated Eric to want to pursue a B.A. in psychology in the near future. He believes that spirituality and psychology go hand in hand (psychology is spirituality trying to disguise as science!) and that one must be spiritual in some way to truly understand the human psyche.

After these series of events, Eric became very dedicated to his own form of autism advocacy. He believed that he had a duty to share what he learned and experienced with the world. Just a few few months ago, however, he rediscovered that inner healing and peace actually resonated more deeply with him. He now focuses on helping others grow spiritually and emotionally and live meaningfully.

Eric sees himself as a visitor, a guest, on Planet Earth. He respects the people here (even though he doesn't fully understand or agree with everything we do) and wants to help us let go of suffering. In fact, he finds great joy in helping people let go of pain. He has already helped several individuals with something he calls "emotional releasing". You can read more about it on his newly launched website: http://rainbowhuman.com.

To Eric, autism work can be likened to world peace. Accepting different people is what world peace is all about. However, he believes that you must heal yourself first. Then, you will naturally develop the empathy to help others. If you resolve your own emotional obstacles, you can help make the world a better place for everyone, including people with autism. You have to first be happy yourself to share it with someone else. He then said that you can heal yourself through healing other people. When I questioned the paradox here, he told me that this paradox is key. It's a continuous cycle of healing!

I hope that Eric and I stay in touch and have the chance to meet again. I am looking forward to staying updated with his projects on healing and I am especially anxious to hear what he thinks of his classes in psychology (I was a proud psych major in college, I'm a big advocate for the field!) If you have any questions and would like to contact Eric directly, please let me know and I can put you in touch with him.

Meeting a local celeb

2009-12-18T21:37:00.007+08:00

Tomorrow, I will be lunching with Eric Chen - a local celebrity, in the autism community, that is :)

Thanks to a fellow blogger, I recently visited Eric's website and was able to get in touch with him. A Singaporean in his mid-20s, Eric was diagnosed with autism in 2001.

After reading his story on his site, it seems like he faced many challenges and much loneliness growing up with autism, but has gained understanding and found peace through education and spiritual means. I'm really looking forward to meeting him and hearing first-hand about his experiences living with autism in Singapore.

"Family reunion" in Nanjing

2009-12-17T21:40:00.002+08:00

During my weekend in Nanjing, I was able to get involved with one of The FIVE Project's monthly workshop/support group meetings for parents of people with autism and other disabilities. It was actually not so much a "support group" than a party or fun get-together for these families. Volunteers (Chinese and American students from the Nanjing-Hopkins University program) also attended to meet and get to know some families.

I attended two such workshops: one for children with autism and their parents, and the other for adults with disabilities and their parents. Both followed the same program schedule:

1. Introductions
2. Pairing up of volunteers and families
3. Talent show
4. Snacks
5. Goodbyes & thank-you's

I was very excited to meet some families and to listen to their stories. One mother of a six-year old son with autism told me that she didn't care if her son learned to read or write or even speak. She just wants him to be able to take care of himself (e.g. dress himself, bathe himself, cook and make food for himself, etc). This seems to be a very common theme among parents. All the parents seemed so happy to meet people who were interested in their family and wanted to get to know them and stay in touch.

The talent shows were my favorite! The kids loved to sing, to listen to music, and to clap along to the beat. The adults were not shy at all about singing, dancing, reciting poems, and even singing in sign language (absolutely beautiful).

I definitely noticed a difference between the parents of the little kids and the parents of the adults. There was a lot less "How can I cure this?" and "When will this go away?" and more of "This is what my child is like and I love him/her anyway", which was really nice to see. The second, older group seemed to have a more comfortable, relaxed, and accepting environment. The families seemed to be much closer to each other, and the workshop seemed like a big extended family reunion! It was especially comforting to know that these families have found a community in which they and their children are accepted and supported, since their society and government provide no support at all. I was so grateful to have been a part of the "reunion", and to connect with some individuals. I even have a couple pen pals from the weekend :)

Volunteers singing to the families a song about love and hope. It wasn't the only time I got teary-eyed that day!

Zhang Ge and a friend, performing during the talent show.

After we volunteers sang "You Are My Sunshine", the adults put on a show for us!

The snacks were a hit :)

Society for the Physically Disabled

2009-12-16T10:30:00.006+08:00

I just returned from my visit to Singapore's Society for the Physically Disabled (SPD) - a very positive experience. Even before turning into the front gate, I saw a sign pointing to the main entrance that read "SPD Ability Center". It's so nice to see the emphasis on ability, and not disability.

SPD is an enormous 5-floor building that provides day programs and services to people with a range of physical disabilities. I visited a large rehabilitation area that had all sorts of exercise, strengthening, and occupational therapy equipment. Joyce (Asst. Director of Rehab Services) told me that most patients who use these facilities are those recovering from strokes, but there were also several rooms for children with autism who have sensory, speech, or motor impairments. I noticed an awesome sensory integration room for children with autism: comfy mats, fluffy pillows, beanbag chairs, big rubber yoga balls, rocking chairs, and a swing. However, I was told that the kids who come are generally high-functioning and already attend a mainstream school; they just need a bit of extra help with their sensory, motor, or speech difficulties.

SERVICES

Joyce and I then ordered some coffee in the canteen and discussed services available in Singapore for children with autism and other disabilities. Most services available are NGOs that are about 65% financially supported by the Singapore Government (the other 35%: private donors). Joyce showed me a table titled Education Pathways for Children with Special Needs (below). It seems like no matter what kind of disability a child may have - sensory impairment, autism, intellectual or physical disability - the ultimate goal is to help them to develop the skills necessary to live as independently as possible and contribute to society through employment or sheltered employment.

For children with autism, in particular, there are two main pathways that can be taken.

The first is for those with higher-functioning autism: The Pathlight School. I won't say too much about this now because I'll be visiting Pathlight next week to learn even more, but Joyce told me that the school follows a mainstream curriculum in a special education setting, with the goal that its students will join their typically-developing peers in either Secondary School (equivalent of U.S. middle school or junior high) or JC (Junior College, or high school) and University.
The second is for those with lower-functioning autism, who follow a special education program in a special ed school. Upon graduating from this program at age 18, they begin vocational training, sheltered employment, or attend a day activity center where skills are taught to prepare for employment.

Joyce told me that while there are clear pathways for these children to follow immediately after diagnosis through adulthood, there is still more than can be done to help young adults settle into employment and become contributors to society. Still, I've already noticed such a big difference from China. This is exactly what parents in China want to see: a clear plan for their children to follow: to attend school, to receive an education, and to become contributing members of society.

SHAME

Joyce and I briefly discussed the issue of "shame" that is so prevalent in Asian cultures. In China, many parents rarely bring their autistic children out of the house; they do not even tell their neighbors or friends that they have a child with a disability! There is a saying in Chinese that is akin to "Don't air your dirty linen in public". However, I feel like keeping your child's disability a secret is taking this to the extreme.

Since Singapore is home to many different cultures (Chinese, Malay, Indian), Joyce has noticed different ways of dealing with acceptance:

Some traditional Chinese Buddhists or Taoists believe that disability is a form of retribution, and many of these families have a very difficult time accepting their child's disability. For example, SPD recently had a Charity Show that raised funds and awareness for those with disabilities in Singapore. Many families made an appearance during the show to put a face to the issue, however there were very few Chinese families willing to do so. They didn't want to reveal to their friends and relatives that they needed help caring for their child with a disability.

On the other hand, Malays believe in fate and see their children, disabled or not, as gifts from God. It is much easier for them to accept their children for who they are and openly seek assistance.

SPECIAL NEEDS TRUST FUND

I've noticed that the biggest worry parents in China have is, "Who will take care of my child after I'm gone?" Joyce said that this is also a very prominent issue in Singapore, especially for low-income families. SPD and similar organizations enforce a Family First approach, seeing the family as the first line of care and supporting/empowering/encouraging parents, siblings, and other relatives to care for the person in need. When this is no longer possible, there are about 10 or so group home facilities that take in these individuals (although Joyce says this is a last resort). For those greater financial means, a Special Needs Trust Fund has very recently been created to ensure ongoing care for children with special needs.

While there is still much to be done, it seems like Singapore is (and has been) on the right track in terms of providing services for people with disabilities. My visit to SPD was very interesting and encouraging. I am really looking forward to my visit to Pathlight School for children with autism next week!

Disabilities in Singapore

2009-12-15T22:26:00.004+08:00

"The maturity of a society is reflected in the way it treats and supports those who are disadvantaged."

- from the 2007-2011 Enabling Masterplan

After spending 3 months exploring autism in China, I am back home in Singapore and am very curious to learn about services for people with autism and other disabilities in this country. Tomorrow, I will be visiting the head office of the Society for the Physically Disabled (SPD) in Singapore. Although its focus is on those with physical disabilities, SPD is known to provide services for people with autism as well.

I've done a bit of reading on services for people with autism and disabilities in Singapore and it looks very promising (especially compared to services in China). Apparently, in 2004, Prime Minister Lee Hsien Loong made the call for Singapore to become an inclusive society - to support persons with disabilities (PWD) to reach their full potential and be included as part of Singapore. Thus, the Enabling Masterplan was born.

I'd like to share a few points from the report's Executive Summary that I found particularly resounding:

Disability affects not only the individuals concerned. It also affects their family members and others who care for them. Many persons with disabilities (PWDs) do not reach their full potential in life because of barriers that arise from their physical environments, attitudes of society and the lack of education and employment opportunities.

Our vision is for Singapore to be an inclusive society where PWDs are given the opportunity to become equal, integral and contributing members of society. Children with special needs will receive effective intervention and education services to maximise their potential and opportunity to eventually work and contribute to society. There will be equal opportunities for PWDs in employment. More PWDs will achieve self-reliance through work.

PWDs will be appreciated and respected for their differences, and will live with dignity in the community. Families will be empowered to care for their disabled members. Parents are reassured as they age and eventually pass on, that care will be forthcoming for the well-being of their special needs children. The physical environment will be barrier-free. PWDs who are enabled through the efforts of the community will, in turn, help their families and contribute back to society.

I am already very optimistic! Really looking forward to visiting the SPD tomorrow and learning even more about disabilities in Singapore. If you are interested, you can read the full 2007-2001 Enabling Masterplan yourself here.

Dining with the teachers

2009-12-13T23:42:00.006+08:00

During my last week in Beijing, the group home teachers were kind enough to have me and the other volunteers over for dinner.

Since the group home is so far from the city, the teachers live in a dorm-like facility in Dongxu village during the week and return to their homes in the city for the weekend. I had expected the dorms to be quite simple, but I was a bit surprised at how modest their accommodations actually were. There were two bedrooms in their "apartment", each with 2-3 bunk beds. There was a tiny kitchen and no dining area - we ate standing up in the larger bedroom. There was no heating in the apartment and I couldn't stop shivering!

Being there and seeing how they live really made me realize how much these young teachers have sacrificed for the Stars & Rain students - moving from their home and friends and significant others to live in a modest dorm in a remote village and completely dedicate themselves to helping children and teens with autism. I feel blessed to know them and to know that there are people like them out there serving the autism community in China.

Our hot-pot meal was delicious and we all had a great time eating and laughing together:

Peipei mixing up some special dipping sauce.

My roommates preparing the veggies.

Xing Laoshi (Panda) anxiously waiting to eat :)

Enjoying our meal together.

Last day

2009-12-11T22:59:00.003+08:00

Today was officially my last day volunteering at the group home :( I leave Beijing tomorrow! Even though it has been a sad, sad day (lots of tears...), it still hasn't really hit me yet. I guess I still haven't fully accepted that I won't be returning to the group home on Monday and watching the teens get dropped off, one by one, for the week.

Even though I'm leaving Stars & Rain and China, I will continue blogging about autism abroad and autism in general. I thought that 3 months would be enough time to write about everything I've observed about autism in China, but there is still so much more I want to write about and so many more photos to share!

I have yet to write about the ABA VB Workshop Part II... about the rest of my weekend trip to Nanjing... about my interview with China's first autism teacher... about my cooking lesson with Tian tonight...and much more. I will also be visiting an autism center in Singapore within the next couple of weeks - I'm really excited to observe the similarities/differences and learn more about services for people with autism in Singapore. As you can see, there will be lots more to come :)

Ningning's note

2009-12-09T23:14:00.004+08:00

Ningning wrote me a Christmas card/goodbye letter (with the help of her mother) and then read it out loud for me :)

Here is my attempt at an English translation:

Dear big sister Xin Yin (my Chinese name),

You are going back to your country. My heart aches and I don't want to part with you. I will always miss you. I hope that we will meet again. Wishing you a Merry Christmas!

Ningning, December 2009, Beijing

It was so sweet and I am incredibly moved.

Always Happy

2009-12-08T23:03:00.007+08:00

I just realized the meaning of Lele's name and had to share it on here.

His full name is 常乐 (Chang Le).

In Chinese，常常 (chang chang) means "always" and 快乐 (kuai le) means "happy". So Chang Le literally means "Always Happy", and 乐乐 or Lele - our nickname for him - means "Happy Happy".

So fitting! Coincidence or fate?

A Merry Xmas and a Happy Happy

2009-12-08T00:41:00.002+08:00

This video of Lele will always be able to make me smile.

The countdown begins...

2009-12-06T22:15:00.004+08:00

How has it already been 3 months??? My time in Beijing is coming to an end... this week will be my last.

The feeling is bittersweet. I am really looking forward to going home to Singapore for the holidays and then being back in the U.S. to start the new year. I'm looking forward to experiencing warm weather again and to wear flip-flops outdoors in December. I'm looking forward to being in a place where people respect property, and don't spit or litter all over the place; people who respect one another, and actually wait in line instead of pushing and shoving (hello, rush hour in Beijing... or any hour in Beijing). I'm excited to freely surf the internet without a proxy and read whatever news or blogs I choose.

I'm going to miss the yummy, cheap food here. I'm going to miss the dumpling restaurant on the corner of the block, the breakfast stall I pass every morning on my way to work. I'm going to miss taking the bus and subway into the city. I'm going to miss Guan Zhuang - the subway entrance I use that is always lively and full of people selling scarves & DVDs, roasting chestnuts, and frying tofu. I'll miss the sights and smells of my home for the past 3 months.

But most of all, it's going to be difficult to say goodbye. To my roommates and fellow volunteers, to the Stars & Rain teachers, to Tian, and to the teens at the group home. Just thinking about it makes my stomach drop. Of course, it'll be easy to keep in touch with almost everyone through mail, e-mail, Skype, IM, phone calls...etc. But what about the kids?

Do they understand the concept of someone leaving and not coming back? Will they understand when I say goodbye to them on Friday? Will they even notice that I'm gone when they return next Monday? Will they miss me? Will I ever see them again?

All I know is that I'm going to appreciate every single moment with them from the time they arrive Monday morning until the time we have to say goodbye on Friday. I'm going to take too many pictures, laugh a little too much, be a bit too emotional, give too many hugs... 'cause I know I'll regret it if I don't.

Jet Li's next movie: UPDATE

2009-12-04T16:11:00.007+08:00

In case you didn't get a chance to read my earlier post about martial arts legend Jet Li and his next movie...

Jet Li has FINISHED filming his next big project: a film about autism, inspired by Tian and her son, Taotao!

The film is called 海洋天堂 (Ocean Paradise), and Jet Li will play the father of an autistic young man, modeled after Taotao himself :) Apparently Jet Li and the young actor who plays Taotao came to the Stars & Rain group home last year to learn more about autism and to observe the teens, in preparation for their roles.

In the film, Jet Li's character is fighting a life-threatening illness and struggling to figure out who will take care of his son when he's gone, a very real worry of many parents of children with low-functioning autism, not only in China but all around the world. Ocean Paradise promises to be an incredibly powerful film and hopefully will have the same impact in China as Rain Man had in the U.S. on autism awareness.

The film will be released on either April 2nd, 2010 (World Autism Awareness Day) or May 9th, 2010 (Mother's Day, in honor of Tian and all autism mothers). As you can imagine, I can't wait to see it!

Jet Li with Tian, his inspiration for Ocean Paradise.

Ningning dancing

2009-12-03T22:54:00.009+08:00

I finally created a YouTube account! I'm excited to be able to start sharing video clips on my blog. The first clip I wanted to post is from the group home's trip to Zhangjiajie. It takes place after dinner on our last night in Zhangjiajie, before we headed to the airport to catch our flight back to Beijing. Ningning and her mother danced together for us!

Just FYI... Ningning has a very short attention span and gets very easily distracted. I was amazed by how long she was able to dance with her mom in this clip. They really have a connection, those two. It's beautiful.

Who's afraid of the... cold?

2009-12-02T22:17:00.005+08:00

One thing that I have yet to understand is a term often used here in China: 怕冷 (pa leng), which literally means "afraid of the cold".

I'm pretty afraid of the cold myself. You wouldn't know that from my leaving my home in hot/humid Singapore and my 2nd home in sunny Los Angeles to go to college in Vermont (where winters are long & bitter) for the last 4 years...but I really don't like cold weather.

Still, the concept of 怕冷 in China is difficult for me to grasp. Almost everyone I've met here (including every teacher at the group home) is "afraid of the cold". Basically, what I've gathered is that they believe that it is very easy to catch a cold in cold weather (According to the National Institute of Allergy & Infectious Diseases, there is no evidence that you can get a cold from exposure to cold weather). Anyway, this 怕冷 phenomenon became especially clear to me this evening when:

1. We stayed indoors after dinner instead of going on our daily walk. It was only about 45 degrees, which isn't really that cold at all. We've been on walks in much colder weather, in the snow too! But no, not tonight... there was a slight breeze, so the teachers decided that it was just too cold to be outside. I've noticed that they've limited time spent outdoors immensely since early October (when it was still warm enough to wear just a sweatshirt outside)... to the point where the teens are pretty much never outside! That can't be good...

2. After exercising indoors (in the "gym room", in place of our daily walk), Lele was sweating profusely and I had him drink a glass of water. Warm water, of course. There is no such thing as cold drinking water here. Immediately after, I got scolded by one of the teachers, who told me that the teens shouldn't drink water after exercising! Apparently, they need to wait for some time before drinking water or else... you got it - they'll catch a cold. I told her that I'd never heard that in my life. Still, she insisted. ??!!

3. While in the gym room, the kids do their exercises (speed walking, sit-ups, and elliptical-ing) fully clothed! They don't change into t-shirts and shorts; they wear what they wear all day: long underwear, long sleeves, and often multiple layers. Sometimes, they are allowed to take off their sweaters while speed walking. But as soon as they're finished, they need to put the sweaters back on! I feel miserable when I have to help Lele put on his sweater on top of his sweaty layers of shirts. I've spoken up, several times... but the teachers won't have it. Ugh.

4. One of the teens at the group home was sick over the past weekend. He was well enough to come back to the group home this week and seems to be doing fine. I noticed tonight that instead of showering, they just had him soak his feet in a tub of hot water. Turns out, he's been doing this every night since he's been back! Three days without showering = one smelly kid. Apparently his father and the teachers agreed to not shower him this week... getting wet in this weather (even though he'd only be wet indoors, in the bathroom!) wouldn't help his cold. So strange... especially since I can't think of anything I'd rather do more than take a hot bath or shower when I'm either feeling cold or getting over a cold.

Lesson learned: there are some cultural differences that I'll just never understand.

Faces of Autism

2009-12-01T23:32:00.004+08:00

Check out the newest faces on a fellow blogger's heartwarming autism blog, Faces of Autism!

Joint birthday party

2009-11-30T21:39:00.005+08:00

Both Yaoyao and Wu Laoshi (our group home director) celebrated their birthdays today!

祝你生日快乐！(Happy birthday to you!)

Yummmmmm....

Baiqi enjoying his bowl of icing.

The guest teachers joined in on the festivities.

A Chinese Rain Man

2009-11-29T21:53:00.009+08:00

I was invited to Mrs. Zhang's house for dinner tonight. Mrs. Zhang is the mother of an 8-year old boy with autism. The family is originally from Shenzhen, in southern China near Hong Kong. They are living in Beijing temporarily while Mrs. Zhang is taking a training course on the TEACCH method, taught by the group home's very own Wu Laoshi! I was happy to discover that Wu Laoshi was teaching such a course (for over 20 parents and teachers of children with autism from all over China). For many years, autism centers in China have relied heavily on visits from foreign experts for assistance and information. Recently, they have begun turning to each other - teachers teaching other teachers, parents teaching parents - which is so much more efficient and cost-effective.

Anyway, back to Mrs. Zhang and her family! I spent a really nice afternoon and evening with her, her husband, and their five children. (Not sure how and why they have five children with China's "One Child Policy"... but didn't want to ask!)

Her son, Xiao Bang, had attended the Stars & Rain kindergarten when he was younger. Mrs. Zhang told me that he has improved so much since attending the program. Before, he couldn't speak, couldn't make requests, couldn't interact with others at all, and often had screaming tantrums. Now, after years of working with his mother and siblings, he can say quite a few words and some full sentences, feeds himself, dresses himself, follows directions, and almost never screams. He is a very happy, sweet, gentle child. And he is surrounded by so much love, all the time. With his family and a special nanny that his parents hired, he is cared for and loved at all times. Mrs. Zhang told me that she hasn’t considered a group home or any sort of living facility for him because she wants to have him at home with his family, surrounded by all this love, for as long as possible.

Xiao Bang has three sisters and a 4-year old brother. According to Mrs. Zhang, Xiao Bang loves his baby brother tremendously. He plays with him, holds his hand, takes him around the house, gives him food, and even sings to him! He is always looking out for him like a good big brother. It was so sweet to hear. It reminded me of the scene in Rain Man where Charlie Babbit is recalling being sung to as a baby by his older, autistic brother Raymond.

Xiao Bang's oldest sister is 12 years old and very mature for her age. She told me that it is easy to take care of her 4-year old brother because he is small, can be picked up and held, and can communicate. Xiao Bang is a bit harder to play with and care for because she can’t always understand what he wants. But, for some reason, she doesn't get impatient with him. She said that she often gets impatient and upset at her friends, but never at Xiao Bang. She then told me that she can get very protective and angry when her classmates tease her brother. They call him stupid (or use the Chinese equivalent of the R-word) and they find him laughable (可笑的). She says that sometimes, she'll get so angry that she’ll hit them or take their books and throw them on the ground. I don't blame her. What an incredible big sister to have.

I had a great chat with Xiao Bang's nanny, a young woman not much older than I am. She graduated in 2006 from the Nanjing Special Education College (one of few institutions in China that offer degrees in Special Ed), where she majored in Childhood Learning Disabilities. The College didn’t have an Autism major until just a few years ago, in 2007. She now lives with Xiao Bang's family and even accompanies him to school!

I was (pleasantly) surprised to hear that Xiao Bang was allowed to attend school, even with a special aide at his side. His mother explained that the school isn't a very "good" school; most students are children of farmers in the outskirts of Beijing. They are therefore a little more accepting of Xiao Bang and his autism. The teachers at this school have no previous experience with autism but are open to learning and working with Xiao Bang. The other children are also very accepting and even play with him. He just started 1st grade, three months ago :)

Upon hearing that I am interested in autism, Xiao Bang's nanny asked me how she could learn more about autism, too. She had studied what books and texts were given to her, but she wants to learn more, on her own. I told her that I often surf the Internet, where I can find recent research published online, or read autism awareness websites, or read other blogs written by autism parents or people with autism themselves. This isn't possible in China because a) such resources either don't exist or haven't been translated into Chinese, and b) many blogs and websites are blocked. I really hope this changes in the near future. Nonetheless, it was really nice to see how well she connects with Xiao Bang, how much she cares about him and has his best interests in mind, and how much he loves her.

There is so much love in that one household; I feel lucky to have been a part of it for one evening.

The Christmas Bazaar

2009-11-28T20:16:00.006+08:00

There's no wasting time between holidays this year!

We at Stars & Rain jumped from celebrating Thanksgiving on Thursday to attending a Christmas Bazaar today! Hosted by the German Embassy, the Christmas Bazaar is an annual charity event that raises funds for several non-profit organizations in Beijing, one of which is Stars & Rain.

The event was lots of fun - there were many different stalls set up, selling authentic German food, drinks, festive desserts, and Christmas-themed crafts. I worked at the Stars & Rain stall, where we handed out flyers and sold some t-shirts, printed cards, and a few of our Group Home's hand-made holiday cards. Unfortunately, our cards didn't receive the enthusiasm that I had hoped for... but I'm going to keep trying (let me know if you're interested!), and they can always be used for future Christmases, right?

I would have to say that the best part of the Christmas Bazaar was learning about the other charities involved. In addition to Stars & Rain, other organizations included The Hope Foster Home (for orphaned children), Huiling Community Services (for people with learning disabilities), Sun Village (for children of prisoners), and The Golden Key Research Center (for the visually impaired), among others. I was very happy to see that such organizations even exist in China, and that they have been noticed by the German Embassy. Thousands of people attended the Bazaar today, and the proceeds will help these charities tremendously. This is what the holiday season is all about.

A "Stars & Rain" Thanksgiving

2009-11-26T21:31:00.005+08:00

Happy Thanksgiving!

The power was out in our house today, which made me think of a few other things that I am very, very thankful for: Electricity, heating, hot water, any water, and the Internet. ☺

This afternoon, everybody at the Stars and Rain Group Home celebrated their very first Thanksgiving!

Our mini Thanksgiving feast!
(Sliced turkey breast...microwavable stuffing...apple sauce...hot cocoa & marshmallows...and Sprite. Not quite your traditional turkey dinner, but good enough for us! ☺)

干杯 - Cheers!

Our turkey dinner! I tried... The kids actually seemed to like it:

感恩节快乐－ Happy Thanksgiving!

Lele resting during free time. He was in this position for a looooong time. Who else feels like this after Thanksgiving dinner?

I'm Thankful For...

2009-11-25T00:06:00.004+08:00

Thanksgiving Day is almost here! Even though I'm in China, I will be sharing and spending this traditional American holiday with my second family - the Stars & Rain Group Home. I've planned a mini Thanksgiving feast in the afternoon, with turkey and hopefully some other festive treats (pumpkin pie, perhaps? I’ve been scouring supermarkets)... I really hope they all enjoy their first Thanksgiving!

In the meantime, I wanted to count my blessings…

I’m so thankful for my family, friends, and all the wonderful people I’ve met in my life who have encouraged, supported, inspired, and guided me to become who I am now. I could go on forever about each and every person that is important to me and why… but today I wanted to write about the kids at the Group Home:

I’m thankful for...

• Baiqi, our little trooper. For his obsessive rearranging that keeps the group home so tidy; for the way he keeps me well-groomed by picking lint off my clothes; for the way he sniffs me; and for the very adorable way he likes to cling onto me like a baby monkey and cuddle.

• Huyang, the big brother. For the way he takes care of the younger ones by holding their hands during our daily strolls; for the inquisitive look in his eyes that makes us wonder what he's thinking; and for the way he sets a good example by following directions promptly… most of the time.

• Maxin, such a mystery. For his squeaky voice that never fails to make me smile; for his own huge smile; for the way he always keeps us guessing; and for the way he sometimes latches on to me so strongly that we are stuck together until pulled apart by someone else.

• Ningning, our big girl. For her unbelievable amount of energy; for her letting me dance with her; for her company during naptime; for her kisses on my cheeks; for the way she tests my patience; and for the way she isn’t afraid to press her face up to mine and look into my eyes deeply, as if searching for something inside of me.

• Yaoyao, the baller. For his too-cool-for-school look: baggy sweatpants and oversized hoodies; for the way he talks in his serious, deep voice, interspersed with high-pitched yelps and vocalizations; and for his letting me sing a duet of a Chinese pop love song, 老鼠爱大米, with him.

• Lele, my buddy. For his priceless facial expressions, for the random things I always seem to find in his hair (glue, food, snot); for his chubby, warm hands that keep mine from getting frostbite in the cold Beijing winter; and for always being able to make my heart melt.

Each of these kids is so unique and frustrating and loveable and hilarious and special in his/her own way. 我感谢星星雨的老师和学生－ I'm thankful for all the teachers and students at Stars and Rain. They've made my time in China more memorable than I could have imagined.

A punishment?

2009-11-23T20:27:00.003+08:00

I had a nice chat with Zhang Laoshi the other night while working the evening shift at the group home. Zhang Laoshi is a 生活老师 or "living skills teacher". She comes in the late afternoon, helps the kids with their bedtime routine (showering, brushing teeth), does laundry, spends the night, and leaves early the next morning.

That night, she asked me for some advice on how to understand and stop specific problem behaviors of one of our teens. I was flattered that she valued my opinion and wanted to discuss and brainstorm some ideas with me. I told her that I noticed how patient she was with the kids, and she replied that she sees them as her own kids. She has a 14-year old daughter (our kids are 10-17), so she knows how teenagers can be and cares for them as she would her own child.

She told me that she has become very protective of the kids at the group home (I can relate!), and she gets very upset to hear people mocking them. She said most of these people simply don't understand what autism is, and many even believe that the parents of autistic children must have done something bad/wrong earlier in their lives and are now being "punished". What a terrible, ridiculous thing to think! Then again, you can't blame these people... they just believe what they hear and they don't know any better. And, once again, what we don't understand scares us.

I really like Zhang Laoshi because even though her title as "living skills teacher" isn't as honorable as that of other teachers, she's still very concerned about the kids and is constantly thinking of new, creative ways to keep them entertained, busy with something they're interested in, or simply happy.

Peipei's wedding

2009-11-22T17:51:00.006+08:00

The Stars & Rain family witnessed Peipei (Stars & Rain development officer and volunteer coordinator) getting married today! It was a traditional wedding that took place in her husband's home, which is in a small village to the west of Beijing. We all got up bright and early this morning (5:30 AM, eep!) to meet Ma Laoshi (Maxin's father, past general manager of Stars & Rain, and wedding MC) for a long ride to the village. It was my first traditional Chinese wedding, and it was quite an experience!

Lots and lots of *loud* firecrackers to greet the bride and groom.

Peipei and her husband-to-be arrive!

So colorful! In the courtyard of the groom's family home.

A cute pre-wedding gift from her husband-to-be...two cartoon newlyweds inscribed with 我爱你 (I love you)!

With the beautiful bride.

The bride and groom bow to their parents, thanking them for raising them.

Ian was asked to say a few words to the bride and groom. He had prepared some traditional Chinese sayings (成语), wishing the newlyweds a happy life together and a baby in the near future!

Then, out of nowhere, I was asked to say a few words on stage as well!

I hadn't prepared anything and was a bit flustered...

Tian giving a moving speech, getting everyone a little teary-eyed (especially the bride)!

She had explained to me that a traditional Chinese wedding is not about the coming together of families. Instead, it is about the groom's family taking in a bride, and the bride's family "losing" a daughter! Sometimes, the bride's parents aren't even invited to the wedding since, technically, their daughter doesn't "belong" to them anymore! So interesting...
On behalf of the Stars and Rain family, Tian bid Peipei "farewell".
("我们的陪陪要被嫁去了!" or "Our Peipei is getting married off!")

Tian, "The Godmother", and the newlyweds.

There was so much food! Ma Laoshi told me that when a family hosts a wedding in a village, the entire community is expected to attend the wedding feast! Less than 200 people were invited to Peipei's wedding, but over 500 came to dine! Everyone who comes brings a red packet (红包) with money as a wedding gift.

The Stars & Rain family!

HOLIDAY CARDS

2009-11-20T10:00:00.009+08:00

The first-batch-ever of Stars & Rain group home *holiday cards* are finally here!!

I will be mailing out packets of 6 cards (one card from each teen at the group home) to whoever is interested! All we ask is that you send the Stars & Rain group home a donation in the amount of your choice* (please see below). Your donation will benefit the Stars & Rain group home immensely.

The holiday cards:

These cards are unique in that they are not mass-manufactured/copied/printed. Each individual card has been hand-made by one or more of the students currently at the group home. No two cards are alike, and each has been designed and created by the students' own efforts, creativity, and care. Donations will directly benefit the very students that made the cards! *Unfortunately, I just realized today (11/24) at the post office that mailing a packet of 6 cards to the U.S. or Singapore costs almost US$30! Because of this, I'll only be able to mail out cards to those who donate US$40 and more. I'm so sorry! (The next cheapest option apparently takes 2 months to arrive....let me know if you're still interested!)

About the group home:

The Stars & Rain kindergarten, the earliest of many early education programs for children with autism in China, has been fortunate to receive much publicity and support since its founding in 1993. The Stars & Rain group home, however, was recently opened in 2006, is one of very few programs of its kind in the entire country, and has received very little funding and support.

The group home serves 6 children, between the ages of 10 to 18, five days a week (the teens live at the group home from Monday to Friday). They are taught educational and practical/living skills using the TEACCH methodology. The group home aims to be recognized as a successful model that can be replicated by other provinces in China since services for teenagers and young adults with autism are so rare right now. The waiting list for the group home is very long, and everyone is hoping that in the near future, Stars & Rain will be able to offer services to more than just 6 teenagers with autism.

How your donation will help:

The families of students at the group home can only afford to pay a fraction of costs they incur. This, combined with the lack of governmental funding and a weak social philanthropy system, is detrimental to the group home's existence. Your donation will help to sustain the group home and help it continue to give the best services they can by paying for the following for each student: food (three meals a day), toiletries (soap, shampoo, toothpaste), teacher and staff salaries, equipment (sensory room items, bedding, desks, chairs), learning materials (books, school and art supplies), and more.

A sample of the cards...

NOTE: The stickers say...

In English: Stars & Rain, China's 1st NGO to serve children with autism.
In Chinese: 因为我们在，世界无孤独。
(Translation: Because we exist, there is less loneliness in the world. (A play on the word "lonely", 孤独, from the word for autism in Chinese - 孤独症, literally "the loneliness disease").

If you are interested in these holiday cards, please contact me at cordelia.ross@gmail.com. As there are only 6 kids at the group home, only so many cards will be made... so our supply is limited! :)

Thank you!

All of us at the group home - students, teachers, staff, and volunteers - would like to thank you for your support and your efforts to help us make this first-ever "holiday card sale" a success! We hope it will become a tradition that will be continued for the many more years to come, to help sustain the group home and to make it a better place.

Baiqi showing off his creations (This is the face I get when I tell him to smile!)

My second family

2009-11-19T20:54:00.006+08:00

Last night, before bedtime, the group home was paid a visit by a baby bat! Li Laoshi (the youngest and newest addition to the group home teaching staff) was the first to notice something flying around in the boys' room. Everything that happened after that moment just reminded me of how much I love being a part of the group home:

Li Laoshi called me into the room to show me the bat. I called Xing Laoshi (the head teacher on duty for the evening) over to check it out. She screamed for Ian, the other volunteer working that night, to get the bat out of the house.

The kids were hanging out in the common room and Xing Laoshi was worried that they would get scared if they saw the bat, so we herded them all into the exercise room, where Huyang (the oldest member of the group home) happened to be walking on the treadmill. We asked Yaoyao to guard the entrance to the exercise room to keep all the kids inside the room, especially Baiqi (the littlest, who has a tendency to wander around and is intimidated by Yaoyao).

So there we were...

Ian and Li Laoshi: running around the bedroom with brooms and a trashcan, ducking from the bat and yelling every once in a while.

Yaoyao: calmly sitting on a stool in the doorway of the exercise room, keeping everyone inside.

Baiqi: dying to leave the room to rearrange things outside but refuses to squeeze past Yaoyao, who is twice his size.

Huyang: continuing to walk on the treadmill as if nothing had happened.

The other kids: probably wondering why they're all trapped in the tiny exercise room.

Xing Laoshi: running around hysterically, shrieking (she's afraid of bats).

Me: laughing so hard that I'm crying.

I love witnessing chaotic, hilarious, unexpected moments like these that take place at the group home on a regular basis. And I love being a member of this crazy, "dysfunctional", amazing group of people that has become my second family. I'm going to miss this family so much when I leave next month...

Special education in China

2009-11-19T11:43:00.006+08:00

I didn't realize that special education actually exists in China until Helen mentioned it to me this past weekend. Apparently, there are several special ed schools scattered around China that serve families who have children with special needs.

Unfortunately, while these schools serve children who are hearing-impaired, visually-impaired, or have intellectual disabilities, most don't recognize autism as a special need. Children who have Down syndrome, for example, can be taught to sit quietly in a classroom, raise their hands, and follow instructions. Kids with autism, on the other hand, due to sensory over- or under-stimulation, may be unable to even sit at their desks. Many of these kids love and need to jump up and down and run around the classroom, often making loud noises, disrupting the class. Special ed teachers in China don't have the knowledge, training, or resources to teach and include kids with autism in their classrooms. As a result, even special ed schools refuse to take in children with autism.

This is a huge issue for children with autism because they have absolutely nowhere to go after age 5-6. Up until then, families can attend early intensive education programs, such as Stars & Rain. Thankfully, there are actually quite a few of these schools/centers in China! However, unlike special ed in the U.S. that follows the typical K-12 school system, after the children and families in China "graduate" from these autism-focused preschools and kindergartens, they are alone once again.

Furthermore, in China there are very, very few programs for older children, teens, and young adults with autism (the Stars & Rain group home is one of just a handful in the entire country!). After their child turns 6, these families are rejected from typical schools and they are rejected from special ed schools. The pressure and desire for parents to "normalize" their child is so much more understandable with this in mind.

Who has the problem?

2009-11-19T00:01:00.004+08:00

As you can probably tell from my previous two posts, Beibei's parents have already helped him learn so much and continue to teach him every day. According to Helen, who has known him and his family for many years, Beibei's progress has been tremendous.

Still, every parent (especially every mother) will always have her concerns. In Beibei's case, his mother explained that he has learned to be more aware of himself and of others. She's explained to him that he may do some things that could surprise or even frighten people that don't know him, and he must be conscious of it. She believes that Beibei understands this and does his best to control his "odd" behaviors/stereotypies/tics. However, every so often, he'll do something like let out a loud, happy shriek... causing strangers around him to jump and stare. Beibei's mother expressed her concern about this while she, Helen and I were strolling along Nanjing's 玄武湖 (Xuan Wu River).

Having worked with individuals with autism and co-occurring Tourette's before (those with autism often show tic disorder characteristics), I remembered that many of them likened their tics to sneezes. The urge to sneeze, the lack of control you have over a sneeze, and the satisfying feeling you have after you sneeze... this is how many people with tic disorder experience behavioral or verbal tics. Beibei's shrieking is probably no different.

Helen then told Beibei's mother something that I'll never forget. She told his mother that Beibei's shrieking and other mild behavioral/verbal tics are not big problems. She said, "他没有问题，是别人有问题“ - "It's not Beibei that has the problem. It's other people that have the problem". If you think about it, she's absolutely right. As long as Beibei isn't harming himself or others, then he's not doing anything wrong. Sure, he might be out of place socially... but if you thought of all his accomplishments and how far he's come in the 26 years of his life as an individual with autism in China, you'd be wowed.

This is precisely why autism awareness is SO important. If just a few people that Beibei encounters each day could recognize that he has autism and understand what it is, he and his family would be a little less stressed, a little less embarrassed, a little less apologetic, a little less discouraged.... and maybe a little more happy.

Autism in China, 20 years ago?!

2009-11-17T22:17:00.007+08:00

For those who read my blog post yesterday ("Meimei"), I apologize if my thoughts appeared scattered and my writing seemed off. I was (and kinda still am) feeling a bit exhausted and overwhelmed from the weekend, after meeting so many extraordinary individuals and families and hearing their stories.

For now, I wanted to continue to write about Zhang Ge and Beibei, two young adults with autism that I met over the weekend. They are both in their mid-20's, which means that they were diagnosed with autism in the late 80's. If services for individuals with autism in China are so limited now, what were they like 20 years ago?!

Talking to Zhang Ge's and Beibei's parents was fascinating and so enjoyable. They had that comfortable, relaxed attitude that I described in an earlier post... the attitude that I've observed in other parents of older children with autism. It's an attitude of acceptance of their child's condition, of a unique understanding of their child, and of an openness to share their experiences with others. They were happy to answer any question I had and were so warm and kind to me.

Both sets of parents told me, on separate occasions, that because knowledge of and services for autism were virtually nonexistent at the time, they could only rely on themselves to teach their children. There were no special education schools, no autism centers, until very recently. Almost everything Zhang Ge and Beibei are able to do now (respond to questions, reading and writing, self-care) were taught to them by their parents. I can't even begin to imagine what a struggle this must have been.

Mr. Zhang (Zhang Ge's father) half-joked that because there are so many early education programs now for children with autism, families may be starting to depend too heavily on teachers and professionals to find creative ways to care for their children. He gave several examples, one of which I wanted to share:

A parent recently came to him for help, telling him that her little boy wouldn't shower. He hated getting in the shower and would only bathe if he could be gently cradled in the bathtub, like an infant. Mr. Zhang replied that he took the boy with him one evening and tried to figure out why he wouldn't shower. He noticed that the boy was especially uncomfortable when his face was wet. He realized that this poor boy probably didn't understand how to breathe properly when showering, and most likely had the sensation of choking or drowning each time he showered! He probably felt extremely uncomfortable and scared, and didn't understand why. No wonder he hated it. So, Mr. Zhang began to shower him from his neck down, keeping his face dry. After a little while, he washed his hair, then gave him a towel to hold over his eyes to prevent water from dripping onto his face. Mr. Zhang said the rest of the shower was a piece of cake and the little boy has had no problem showering since then.

Sounds too good to be true, doesn't it? Still, Mr. Zhang's point was that parents today seem to depend too much on others to figure out what is wrong with their child and to fix it. They do this instead of putting themselves in their child's shoes and figuring out what may be causing the problem, as Mr. Zhang's generation did for Zhang Ge and Beibei. It is an interesting thought, although it is clear that parents of children with autism today (in China and all over the world) still experience a tremendous amount of pain and pressure. I wonder if Mr. Zhang's view is kinda like the "when I was your age, I walked three miles, uphill both ways, in snow, to get to school" tale? Nonetheless, I have so much respect and admiration for Zhang Ge's and Beibei's parents for accomplishing so much, for their own children and for others, despite all the obstacles.

With Beibei and his parents.

Zhang Ge and I.

Meimei

2009-11-16T20:13:00.009+08:00

Just returned to Beijing from an incredible weekend in Nanjing with Helen. I was fortunate to be able to meet lots of children and adults with autism and other developmental disabilities, and their families, during my trip. It was so inspiring.

I spent a lot of time with Zhang Ge and her family, who have become very close friends of Helen. Zhang Ge was 8 when she met Helen, who was 22 and doing some volunteer work after college at the time (sound familiar?). Zhang Ge is now 25 - she and Helen have stayed good friends all these years.

Zhang Ge has autism, but she is verbal and is actually quite talkative! Like most people with autism, she can't quite carry on a conversation and almost all the questions she asks are "self-centered" and related to her own interests (e.g. the number five!) Still, it was so nice to get to know her, to chat with her about "five", and to hear her family's story. This weekend, I learned that every individual and every family has their own story to tell, and each one is so interesting and moving in its own way. Please read about Zhang Ge's story on The FIVE Project's website (scroll down to the 2nd translated article) and on her family's website.

I also met Beibei this weekend, who is a 26-year old young man with autism. He loves to laugh and smile, and can answer very short, simple questions but, other than that, does not really speak. Still, Beibei is a genius. He started learning how to play the piano at age 20 and, six years later, he is a brilliant piano player! Also, both he and Zhang Ge both have an amazing memory... they can repeat English words (e.g. colors, numbers, animals, types of flowers) that they learned when they were 2 years old! That's pretty remarkable, if you ask me. Please also visit Beibei's website when you get the chance, and check out his charming photos!

What I found kinda cool about hanging out with Zhang Ge and Beibei was that they were the first people with autism that I've met in China who are older than I am. The kids I work with at Stars & Rain call me 姐姐 (Jiejie, or "big sister") or sometimes, 阿姨 (Ayi, or "Auntie", which makes me feel old!). I am also a jiejie at home - I grew up with a younger brother and three younger cousins. But, Zhang Ge and Beibei called me 妹妹 (Meimei, or "little sister") all weekend! It didn't click immediately when they first called me meimei, but I got used to it and started to like it. It made me feel more like a peer and a friend to them, rather than a teacher or superior.

Anyway, I still have so much to share about the weekend but need to rest up for an early start tomorrow at Stars and Rain! More to come...

The FIVE Project

2009-11-14T19:37:00.006+08:00

I am in Nanjing for the weekend, and have finally met the woman responsible for my volunteering in China: Helen McCabe! Since graduating from Middlebury College, Helen has conducted much research on autism in China. Helen and I have been communicating through e-mail since 2007, when one of my Chinese teachers at Middlebury found out about my interest in autism and gave me Helen's e-mail address... So you can imagine how thrilled I was to finally meet her this weekend :)

I've only been in Nanjing with Helen for less than 24 hours and there is already SO much that I want to write about! I'll be doing that next week, when I am back in Dongxu village in Beijing.

Helen is now a professor in the Special Education department (teaching classes about autism) at Hobart and William Smith College in New York. She also co-founded (with her sister, Karen) The FIVE Project, an organization that creates and supports educational, vocational, and community participation opportunities for individuals with autism in the US and in China.

Here is a summary of FIVE's history, taken from the organization's website:

FIVE's inspiration: FIVE's inspiration is Zhang Ge, a young woman with autism in Nanjing, China PRC. FIVE's Board President, Helen McCabe, met Zhang Ge in 1992 when Helen was 22 and Zhang Ge was 8 years old. Over the years, Zhang Ge and Helen have remained important parts of each other's lives. Helen and other board members have met Zhang Ge and other individuals with autism and other disabilites in China and realized the need for more services to help families.

Why does FIVE exist? People often ask why we do this work in China. Unlike in the United States, where special education is mandated by law, and where there are numerous educational and vocational opportunities supported by government and private agencies, in China there is a serious need for information and services for children, adolescents and adults with autism and other disabilities. For example, autism was only first diagnosed in China in 1982 and awareness is only beginning. Because of a lack of awareness about autism and other disabilities (including mental illness and mental retardation), many families still face school rejection, social discrimination, and a lack of any type of support.

In order to help address these problems, FIVE conducts workshops in China geared toward family members and professionals working with individuals with autism. FIVE also strives to raise awareness and support of people with disabilities by holding large, public events as well as smaller neighborhood events. FIVE also provides written materials on this website and through mailings. Two Peer and Family Support Groups for individuals and families of individuals with mental retardation, mental illness, and autism have been running since January 2008. Because the services offered by FIVE are offered in Chinese, FIVE also assists Chinese families in MA, USA in person and in other parts of the USA and abroad by mail.

Why the name "FIVE"? Another question we hear is "Why is it called 'The Five Project'?" The name was chosen in honor of Zhang Ge who, like many individuals with autism, has a deep love and interest in certain things--in this case, the number five!

I can attest to this final question. I've had the delight of meeting and spending time with Zhang Ge, and she love love LOVES the number 5! She can spot the number 5 from an incredible distance and pick it out of any form of writing... and most questions she asks can be answered by the number 5! I think she's taken a liking to me because my hotel room number is 505 :)

ABA VB Workshop, Part I

2009-11-14T06:37:00.003+08:00

This past week has been an absolute whirlwind for me. Between returning from Zhangjiajie, renewing my visa (a painful process), fighting a cold, running to meetings, blogging about our trip, and working at the group home... I didn't get a chance to write about the most important part of the week - Stars & Rain's Applied Behavioral Analysis (ABA) Verbal Behavior (VB) Workshop!

The workshop took place from Saturday, Nov. 7 to Tuesday, Nov. 10 at the Stars & Rain kindergarten. Dr. Suzanne Jacobsen* (an ABA expert from the ABA Learning Centre in Vancouver) taught attendees the latest principles and techniques of teaching children with autism to communicate. Besides all the teachers and staff at the Stars & Rain kindergarten AND group home, also in attendance were about 50 other teachers who had come from schools (for children with autism and developmental disabilities) all over China!

Dr. Jacobsen's workshop itself was fascinating. I especially enjoyed observing the cultural differences and (often humorous) misunderstandings that became apparent (Dr. Jacobsen lectured in English while Tian, the founder of Stars & Rain, translated).... BUT my observations on this will be an entirely different post! Look out for "ABA VB Workshop, Part II", coming soon :)

Although I enjoyed learning about the lecture material and observing the teachers' reactions, my favorite part of the entire workshop was on Sunday evening, when it was time to say goodbye to the visiting teachers who had to leave Beijing and return to their respective towns and schools.

Before they left, we all pulled our chairs into a large circle and faced one another. One by one, all the teachers introduced themselves, told us where they were from, and shared the biggest or most memorable impression of the workshop. It was so moving to listen to these teachers tell us how far they had traveled (20, 30 hours by train!) to come, and how much they had learned and will share with their colleagues. Some of them explained that they were the only autism center in the entire province, and thanked Dr. Jacobsen on behalf of all the children with autism in their province. Finally, it was time for Tian to speak. She stood up, took the microphone and, before she even began to speak, began to cry.

She started off by telling us that since she retired from her position as director of Stars & Rain last year, she has been nothing but a mother, a mother of a child with autism. She thanked her own parents, who are now in their late 80s and are very weak (her mother recently recovered from cancer surgery). Because her parents were able to take care of her son, Taotao, she was able to attend the workshop and translate. She said that they were so old and weak that they couldn't even take Taotao out for a walk - all he could do all weekend was sit on the couch. Still, he was with people who loved him and looked after him, and that was all Tian could ask for.
She then thanked everybody present at the workshop, saying that it was people like us who help take the burden off of the parents. She thanked us on behalf of all the children with autism in China and their families. There was not a dry eye in the entire room. I could tell that all the teachers were that much more motivated to take what they'd learned, apply it, and do their best to help children with autism. There is nothing more powerful than a mother's voice.

*Thank you to the Soong Ching Ling Children's Foundation of Canada for sponsoring Dr. Jacobsen's visit to Stars & Rain!

Our trip - Day 5

2009-11-12T22:57:00.005+08:00

Friday, 11/6, the 5th and final day: We spent our last day back at Zhangjiajie National Forest Park, walking along Jinbian Stream, a peaceful and beautiful winding stream (3.5 miles or 5.7 km long) surrounded by green hills and colorful flora. We also saw lots of wild monkeys during our walk... they were adorable. They didn't seem to be scared of humans at all and came really close to us!

During our walk, Lele again got really exhausted and began to throw some tantrums. I noticed that I had become very protective of the kids. During one of our rest breaks, Lele started to cry loudly, and again strangers gathered around us to see what the commotion was all about. Some of them pointed and whispered about Lele and some even laughed out loud at the sight of him. I got VERY upset seeing this, and I pushed my way to the front of the crowd, crossed my arms, and stood in their way. I didn't have the guts to tell them off. Thankfully, Julian came over, telling them there was nothing to see and that they should leave. We were both so annoyed and angry… I can only imagine how the parents must feel, having strangers react in this way to their child.

The mother of one of the little kids treated everyone to a delicious dinner that night. Lele’s grandma and Ningning’s mom thanked her and told her that she worked too hard (你太辛苦了) but she replied, “all our kids are the same!” (我们都有一样的孩子！) - something like “we are going through this together” - which was really touching to hear. I was also really touched when, after dinner, Ningning and her mom started to dance together! I had never seen Ningning concentrate on something so diligently before. She was very focused on the dancing and seemed to enjoy every moment.

The flight home was pretty uneventful...all the kids were again very calm and relaxed. At different times, Lele and Baiqi got somewhat restless… but it was nothing that a few songs from my iPod couldn’t help! They LOVED listening to the music. We listened to everything from Enya to Kelly Clarkson. At one point, Wu Laoshi wanted to talk to Lele and took the earpiece out of his ear. Lele immediately grabbed it out of Wu Laoshi’s hand and stuck it right back into his ear! It was so funny :)

Jinbian Stream.

Li Laoshi, Chen Laoshi, Bjoern, me, Julian.

Manti & I.

Wild monkeys!

Ningning & her mother, dancing after dinner.

Lele & I, listening to music at the airport.

Boarding our flight back to Beijing. Goodbye, Zhangjiajie!

An inclusive program

2009-11-11T23:16:00.009+08:00

This afternoon, I had the opportunity to visit the Beijing University Medical School Kindergarten (北京大学医学部幼儿园）- an inclusive kindergarten of 300 children, 20 of which have autism. The inclusive program that these 20 kids attend is called the Beijing Association for the Rehabilitation of Autistic Children (BARAC).

I really didn't know what to expect, since my only encounter with autism in China has been through Stars & Rain. The first thing I noticed about the kindergarten was its sheer size. There was an enormous playground outside of a huge building, which was filled with lots of classrooms, each filled with many students. I was taken to the top floor, where I was able to observe a special afternoon class for children with autism. There were 3 teachers to about 10 students, each of whom had a parent or grandparent with him/her for extra support.

It was really interesting to hear what the program was all about. The teachers told me that the autistic children accepted into the program usually have moderate to high-functioning autism. The reason for this is because they try to include these kids in the classroom, with the typically-developing children, as much as possible. Because they wouldn't be able to have a special aide to guide them, these kids must already have some skills and some language (lower-functioning children must attend special programs/schools, like Stars & Rain) . I was actually really surprised at how well some of these kids were able to communicate. One little boy, who I was told had Aspergers, spoke like a little professor! He was so eloquent, poised and charming. Many of the other kids didn't hesitate to greet me and ask for my name.

The autistic children who are new to the kindergarten usually start off spending half their time in the regular classroom and half their time in a special-ed type classroom. The more skills they develop, the more time they spend in the regular classroom, until they are fully integrated with the other children. I really like this approach (I believe it is the same in the U.S.); it is so important to keep autistic children around their typically-developing peers in order to create opportunities for social interactions and friendships.

Because the kindergarten is associated with Beijing University, it receives support from the government. I was struck by the facilities, equipment, and resources at the kindergarten that we don't have at Stars & Rain: big, warm classrooms... polished wooden floors... big mirrors... colorful plastic gym mats... bouncy yoga balls... wonderful arts and crafts materials... and even a ball pit! It's amazing how different a classroom can look with a little more funding. Sadly, the teachers told me that even though the autistic kids in the integrated program are high-functioning, many of them are still not accepted into schools after they leave the kindergarten. The burden that their parents must carry is the same as that of Stars & Rain parents, and of all other families with autism in China.

The entrance to the kindergarten.

Great facilities in the BARAC classroom.

Sweet sixteen

2009-11-11T21:53:00.005+08:00

Today was Maxin's 16th birthday!

He walked into the group home with his dad this morning with a HUGE smile on his face. He was in a great mood all day (almost too good of a mood, actually... he followed directions really well but was too excited to focus on anything, including sleeping during naptime!). Still, seeing him like that made us all so happy.

Here are some photos (taken by Julian) of the birthday party:

Classic Maxin.

Birthday boy!

Blowing out candles.

Yummy cake.

Lele, THEN & NOW

2009-11-10T18:37:00.005+08:00

Check out this gem I found, hanging in a photo collage at the Stars & Rain kindergarten! Lele and his grandma, Laolao :)

Then (1999)...

... and now!

Our trip - Day 4

2009-11-10T17:42:00.000+08:00

Thursday, 11/5, Day 4: Today was SO exhausting! We hiked up 7.2 km worth of steps , across 3 different mountains in Zhangjiajie National Forest Park. Huyang, Baiqi, and the three little kids were incredible – after reaching the peak 3 hours later with all the adults, they didn’t complain once! Lele and Ningning only joined us for the first 20 minutes; they stayed at the bottom resting with Laolao and Ningning’s mom. We were reunited again at lunch, when Lele came up to us, probably noticed that we were all worn out from hiking, and started to sing “不着急，不着急” (Don’t worry, don’t worry). Too cute! It was as if he had become a younger, chubby, Chinese version of Bob Marley! :)

After lunch, we rode down the Bailong elevator (supposedly the tallest elevator in the world at 1,070 ft) and got another fantastic view of the park. Again, Lele didn’t fail to make us smile… We all thought he would be scared (being enclosed in a tiny elevator at such a high altitude), but when the elevator stopped at the bottom level, he happily screamed at the top of his lungs, “Ai-YO!” with the biggest grin on his face – it was hilarious!

I wanted to take some time to reflect on the three little kids that were with us. I realized that unless you know autism well and can recognize some main characteristics (poor eye contact, solitary play, nonverbal), you would never be able to tell that these kids had autism. Instead, to the observer, they would just seem like little kids running around and misbehaving, and of course their parents would get the blame. The little girl with us screamed very often, for no apparent reason. It was probably a stereotypy and uncontrollable, but I’m sure her mother often gets dirty looks from strangers who believe that she can’t keep her "misbehaving" child under control.

I also witnessed strangers trying to talk to these cute little kids, then getting surprised or offended when they don’t respond. Even though they have autism, these children appear just like any other child, so people judge them when they don’t act like other children. This social pressure, on top of the already existing stress of having a child with autism, must be overwhelming for parents.

Some photos from Day 4...

Li Laoshi & Baiqi... just two boys chillin'.

The group outside the entrance to Zhangjiajie National Forest Park.

Lele doing a great job on our walk.

Wu Laoshi carrying the Stars & Rain banner.

Huyang & Ian leading the pack during our hike up the millions of steps.

Li Laoshi & Baiqi taking a break.

Huyang taking a break.

View from the top!

Laolao, Lele, and me.

Stars & Rain, represent! All the locks on the railing symbolize eternal love: couples who visit the park together hang up the locks and throw away the key! There were thousands of them.

Another view from the top.

World's tallest elevator.

Our trip - Day 3

2009-11-09T14:39:00.003+08:00

Wednesday, 11/4, Day 3: After exploring Fenghuang a bit more in the morning, we drove back to Zhangjiajie and visited 黄龙洞 (Huanglong Dong, or Yellow Dragon Cave). The limestone cave is inside an enormous mountain and occupies an area of 100,000 square meters! There was even a lagoon inside, and we all got to ride around in a little boat. The kids loved the boat ride! We were all very relaxed. Not for long though … After getting off the boat, we climbed up what seemed to be thousands of stairs, to get through the cave! Lele, as you can imagine, got tired and started to get upset. After lots of screaming tantrums, short breaks and several pieces of chocolate later, we finally made it out the other end!

I was able to chat with Ningning’s mom for a little while at dinner. She told me that up until Ningning was 2 years old, she was bright and alert and had some language. However, after age 2, she started to regress. Ningning slowly lost all these qualities. She lost that “spark” in her eyes. Now she can whisper a few words and short sentences, when prompted, but cannot initiate a request on her own.

I asked Ningning’s mother what she thought the reason for this regression could have been. Was it a vaccination? A high fever or illness? She said it was none of these things… Ningning’s decline in functioning just happened gradually. It was almost as if a spirit had taken her daughter from her, but she didn’t seem to want to elaborate on this and I didn’t want to keep probing. Despite this regression, Ningning still has a brilliant memory. Her mom said that she can memorize Chinese characters very easily, after merely glancing at them (those who have studied Chinese will understand how difficult and amazing this is)! Because of this remarkable skill, Ningning can read novels and newspapers, but we’re still unsure of how much of what she reads is actually understood.

Ningning & her mother.

Baiqi & Li Laoshi.

Lele & Julian.

Me, Lele, and Laolao (his grandma).

The group!

Two adorable little kids in Fenghuang.

Making jiangtang (ginger candy).

Jiangtang

Fenghuang village

Fenghuang

Dried fish at the marketplace

Lele happily eating a piece of fruit.

Riding a boat in Huanglong Dong.

Lele getting fanned by Wu Laoshi during a rest break.

A Middkid visits Stars & Rain

2009-11-09T12:54:00.003+08:00

Elise, a friend from Middlebury who is currently spending her junior year abroad in Hangzhou, paid Stars & Rain a visit several weeks ago, during her "fall break" trip to Beijing. It was exciting for me to be able to show Elise and her friend Myra (a Smith student also studying in Hangzhou) the center and to introduce them to the teens at the group home.

Here are some of Elise's comments that I found particularly interesting and wanted to share:

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 approach to 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.

The students at the group home 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.

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.

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.

Please visit Elise's blog to read more about her reflections on her visit to Stars & Rain. Thank you, Elise and Myra, for visiting!

Our trip - Day 2

2009-11-08T18:30:00.006+08:00

Tuesday, 11/3, Day 2: We got up bright and early to take a 4-hour bus ride from Zhangjiajie city to a beautiful little village called Fenghuang. Again, all the kids handled the ride surprisingly well! Fenghuang was a really interesting place to visit. It is very traditional village: the people there, the Miao ethnic minority, live in houses and alleys untouched by modernization. They still wear traditional clothing and wash their clothes in the river. At the same time, Fenghuang seemed very touristy - most shops we passed were selling souvenirs.

In the late afternoon, Lele got hungry. We happened to be strolling through the markets at that time and Lele would head toward every food stall we passed on the street. Occasionally he tried to reach out and grab things, but luckily there were enough people to make sure he didn’t quite reach the food!

Walking around with our teens got us a lot of stares. I’ve noticed a huge rubbernecking phenomenon in China. Except instead of just staring, people actually get up and walk over to see what the fuss is about! At one point during the day, Lele started to throw a tantrum and scream. Lots of people walked over to us, gathered around Lele, and just stood there, watching to see what would happen! It really made me angry; it was as if they were watching an animal at the zoo. The teachers had to actually “shoo” everyone away, telling them “there’s nothing to see here”.

Huyang & Ian on the bus.

Cheng Laoshi, Xing Laoshi, Lele, me, Li Laoshi in Fenghuang.

Baiqi, Ningning, Huyang, and Lele in Fenghuang!

Bjoern, Baiqi, and Li Laoshi strolling down a street in Fenghuang.

Huyang & Julian strolling.

Wu Laoshi, Lele, and Laolao.

Stopping for a break.

Does anyone else see a resemblance?

Fenghuang's Tuo Jiang River.

Tuo Jiang River.

Our trip - Day 1

2009-11-07T19:59:00.006+08:00

We're back from our trip to Zhangjiajie! It was an exhausting week, but very fun and memorable. I have lots of stories and photos to share, so I thought I'd do it one day at a time...

Monday, 11/2, Day 1: When we all met up at the group home to go to the airport, you could tell that the kids knew that something was up. Huyang was louder than usual, Baiqi was in a great mood and didn’t stop smiling, and Lele was calm and content. When prompted ("Where are we going?"), they could all answer "坐飞机!" ("getting on a plane!"). Unfortunately, the other two teens from the group home weren’t able to come with us, but we were joined by Lele’s grandma (Laolao) and Ningning's mother at the airport.

It was fun to be with the kids in a different setting and see their personalities and stereotypies outside of the typical group home environment. For example, during security check, Baiqi couldn’t help reaching into other people’s boxes and rearrange their things! The plane ride was surprisingly smooth, despite a long delay. All the teens seemed particularly relaxed during the flight; everyone was more excited than scared. At one point, Lele got excited and started to sing and growl really loudly, while Ningning continued to laugh hysterically, both of which I’m sure made some of the other passengers a little nervous!

At the airport...

Cheng Laoshi (teacher), Laolao (grandma), Lele, Li Laoshi (teacher), Bjoern

Li Laoshi & Baiqi.

Lele's first flight!

When we arrived, we were greeted by three adorable little kids and their mothers. One of them lived in Zhangjiajie, while the other two lived elsewhere in Hunan province. They had connected through their children, who have autism, and became close friends. One of them had actually attended the Stars & Rain 11-week course two years ago. Anyway, they somehow found out about our trip to Hunan and wanted to join us. I’m really glad they did, it was so great getting to know them.

Some more photos...

2009-11-02T11:23:00.001+08:00

So I now know the reason for the premature snowstorm over the weekend... it was artificially induced! Click here to read more about it.

We're leaving for Zhangjiajie in a few hours! So excited! Before I left, I wanted to share a few more photos of the awesome kids I've been working with:

Huyang & Ningning

Me & Lele on the swing in the front yard

Lele.

Maxin.

We love bubbles at Stars & Rain!

Group home goes on a trip!

2009-11-01T20:14:00.010+08:00

I woke up this morning to a huge snowstorm outside my window. I thought leaving Middlebury meant leaving the bitter cold for a little while... I guess not! And it's only November!

Luckily, we all at the group home (teens, teachers, and volunteers) get to escape the Beijing cold for a few days this coming week! Tomorrow afternoon, we are leaving Dongxu village and heading southward for Zhangjiajie, a small city in Hunan Province. Zhangjiajie is known for its beautiful natural scenery: parks, mountains, and caves.

I'm excited to tour the area and to enjoy fall weather for just a little bit longer, but I'm most excited to go on this trip with the group home teens! I have no idea what to expect from them... how they will handle the 2-hour flight and hotel stay, how they'll react to our day trips and sightseeing, if they even understand that we are departing on a week-long trip tomorrow... we'll find out soon enough! All I know is that we will be walking and hiking a lot, and that I have been paired up with Lele. Lele can barely get through a 30-minute stroll around the village so I'm not quite sure what he'll think of our daily excursions... but we'll worry about that when we get to it. Anyway, it seems like Wu Laoshi has planned a fun week for us all... I can't wait!

(Photo credit: http://www.chinaexpat.com/files/u659/zhangjiajie-national-forest-park.jpg)

Bittersweet graduation

2009-10-31T14:29:00.003+08:00

Friday was a bittersweet day at the Stars & Rain kindergarten. It marked the last day of the 11-week program that 60 children and their parents took part in. Unfortunately, I wasn't able to get there in time to bid the families goodbye. Even though I had only spent a few days with Zhang Laoshi's class during my first week volunteering (before moving to the group home), I got pretty attached to those adorable little kids! I would see every so often, walking to and from Stars & Rain, in the mini-mart down the road, or sometimes on the bus, and I was always greeted with a hug, sometimes a smile, and sometimes even a "姐姐好!" (Hello, big sister!).

Wang Laoshi, manager of the group home, was at the "graduation/farewell ceremony" for the families. He told me that all the parents seemed very sad to leave, a lot of them were crying as they said their goodbyes to the Stars & Rain teachers and staff. Stars & Rain had become a safe haven for them for the past two and a half months: for the first time, their kids were accepted by people around them, and with so much warmth and love. For the first time, they were given hope that their children could learn: learn to communicate, learn to play with others, learn to be in a classroom, learn to follow instructions...etc. It's hard enough to say goodbye to a place that has been your home for a few months... but can you imagine how hard it must be to leave a place where your child and your family were not judged or criticized, where it was okay to be different?

On a brighter note, I attended an "end-of-semester" meeting with all the Stars & Rain teachers and staff in the afternoon, where we discussed the past 11 weeks' highs and lows, parents' reviews, and goals for the next session and next 60 families. It seems as though almost every parent was happy with the outcome of the 11-week program, many of them met and even exceeded their goals and expectations for the course, and more than 70% of families believe that their child may be ready to go to school! Now that's something to smile about :)

A few photos

2009-10-30T16:55:00.009+08:00

I finally got consent from the parents of the group home teens to share photos of them on my blog! Here are a few shots I've taken so far:

Lele & Julian.

Lele singing.

Lele, me, and Maxin.

Children of the Stars: a documentary film

2009-10-29T21:15:00.011+08:00

Children of the Stars is a documentary about autism in China and Stars & Rain. The documentary focuses on the story of one family who traveled across the country to get to Stars & Rain, with hopes of getting help for their five year-old son who has autism.

I hope to be able to watch the full documentary sometime soon. I could only find the trailer of the film online, and just watching that made me a little teary! I'm so happy that someone took the initiative to make this film and it seems to be getting a lot of support and publicity, which is awesome for raising awareness about autism in China.

Here is the trailer for Children of the Stars:

To learn more about the film, click here.

Fundraising idea

2009-10-29T20:57:00.004+08:00

I thought of a fundraising idea for the group home today that I'm really excited about: Christmas cards! I found out that the group home office has a collection of Stars & Rain logo stickers left over from previous years. We also have tons of construction paper and other art supplies that aren't being used. So we tried making a few Christmas cards with some of the teens today during arts & crafts, and they turned out really well!

I worked with Maxin, who is usually in his own world and, probably due to sensory overload, is uncooperative more often than not. But today, especially during arts & crafts, he was super cooperative and seemed to enjoy making the Christmas cards! He was able to cut out a Christmas tree, decorate it with stickers, apply glue to the tree, and paste it on construction paper! This doesn't sound like much, but if you knew Maxin, you'd be amazed too - He always has his hands tied together with a piece of cloth. People who visit the group home and see him ask us why we tie his hands up like that, and we always have to explain that we don't do it, he does it himself. He likes it that way. It must be something about the pressure from or feeling of being bound tightly that somehow is comforting. However, as you can imagine, it's pretty difficult to do things with your arms and hands when they're tied together... so Maxin's creating the Christmas card so well and so cheerfully was a miracle!

My hope is to help the kids make enough cards and other crafts to be able to sell them at the German Embassy Christmas Bazaar, a yearly event in early December that Stars & Rain has been invited to. I also hope to sell some cards to my family and friends and anybody else who is interested... more details to come!

Homework, translated

2009-10-28T22:39:00.006+08:00

It was difficult to cram a month's worth of thoughts about my work at the group home into 3 sentences....so I didn't. Oops! The "homework" I turned into Wu Laoshi this afternoon was slightly longer than suggested, but he didn't seem to mind and I'm glad I got to include more of my thoughts in the summary.

The assignment given to each volunteer/employee at the group home was to write a few sentences about our experiences so far at Stars & Rain. Here is what I wrote, in Chinese and then translated into English:

因为我在美国跟很多自闭症的孩子工作了很多年，我很高兴能来北京，在星星雨当志愿者。每天学习和观察中国治疗自闭症的方法，非常有意思。我在星星雨，观察了老师，认识了学生，才一个月，已经学了很多，可是我还有一些问题。比如，

1。每个孩子的潜力，目标是什么呢？有些东西他们已经学会了，可是还需要重复，为什么呢？为什么不学一些新的东西呢？

2。每位老师的教学风格和方法都不一样，有的用卡片，有的不用，有的用这个，有的用别的，志愿者会有一点糊涂，那孩子不是更混乱了？我觉得教学的方法和教材要统一，这样会比较有效。孩子们重复的学习也比较学得快.

3。我最佩服的就是看见老师对孩子很尊重，仁慈，和爱。教或者跟着自闭症的孩子工作是会很累的，如果很容易失去耐心，就会骂孩子，打他们，罚他们或者不理他们，太可惜了。这些孩子的吸收能力和领悟力和一般的孩子是不一样的。可是我也明白资源有限，老师不够而且老师也做了很多很累。

我非常感谢来到星星雨当志愿者的机会；星星雨的老师，学生，都教了我很多，我也希望我能尽一点心意来回报，帮助他们。

Over the last few years, I've worked with many people with autism in North America. I was especially grateful for the opportunity to come to Beijing and volunteer at Stars & Rain. Each day, I learn and observe more and more about how autism is treated in China; it has been very interesting. Even though I've only been here for a month, I've learned so much from observing the teachers and getting to know the students at Stars & Rain. Nonetheless, I still have a few questions:

1. What is each student's learning ability and what goals do you have for them? Some of them continue to repeat things that they already know how to do. Why don't they learn new and different tasks?

2. Each teacher's teaching style is different. Some teachers use the communication cards strictly, while some teachers only use a few, and only sometimes. The students and even the volunteers can get confused. I believe that the students will learn more quickly and effectively if everyone uses a consistent method with each student.

3. What I appreciate/admire most about the Stars & Rain group home is that all teachers are incredibly kind and patient. Working with people who have autism can be difficult, and it is easy to get frustrated and lose your patience. Sometimes people shout at them, scold them, push/pull them around, and even hit them... but it isn't helpful. We need to remember that the ability of these children/teens to communicate and to absorb and understand information is different from that of neurotypical children. On the other hand, I can only imagine how exhausting it must be to be a teacher.

Once again, I'm very grateful for the opportunity to volunteer at Stars & Rain. Stars & Rain's teachers and students have all taught me so much, and I hope to reciprocate and do my best to help them in return.

Evening stroll

2009-10-28T21:43:00.005+08:00

I had a really nice lunch with Chi today. Chi is a grad student from China who is now studying in the U.S. She's currently back in China doing research for her dissertation on autism in China. She's been collecting data and interviewing families of children with autism for a couple years now, and what she shared with me over lunch was so, so interesting. More about this later!

I wanted to write about our evening stroll tonight. I was paired with Ningning while Lele was with Li Laoshi (our friend, Li Shuai, who just got his teaching certificate and officially became a teacher at the group home. Yay!). Everything was going well for the first 20 minutes... Ningning actually let me sing out loud and the entire group got pretty far down the path (usually at least one teen insists on turning around halfway).

On our way back, however, Lele started throwing a hissy fit. I was focused on Ningning (who had decided to stop walking altogether and lie down on the pavement) and too far away from him to hear what the fuss was about. All I knew was that Lele had gotten upset for some reason. Before long, he started shrieking and sobbing, flapping his arms and jumping up and down, which he does when he is seriously upset.

After trying to console him and continue walking for a few minutes, Li Laoshi walked over to me and asked if I could take over with Lele instead, telling me "Lele seems to really like you." Just hearing that made me so happy! I walked over to Lele and held his hand and, sure enough, he stopped crying, wiped his nose with the back of my hand, and started to sing. I was on cloud 9 for the rest of the walk back.

A disturbing little joke

2009-10-28T01:22:00.005+08:00

I admire all the teachers at the group home, I really do. Each of them are great with the teens in his/her own way and they all have a wonderful sense of humor. Usually.

But... one of them told a "joke" today that I found quite disturbing:

Since Oct. 31st is coming up, I asked the teacher if she's heard of Halloween and if it is celebrated in China. Even though they don't celebrate it in China, she had heard of it and was familiar with the spooky theme and the custom of wearing Halloween costumes. She asked how I planned to celebrate the holiday, and I told her that I would probably meet up with some expat friends. Then - I couldn't believe it - she joked that I should bring a couple of the teens from the group home along, which would definitely scare some of the partygoers! It took me a while to process her joke, and once I realized what she had said, I was shocked.

I don't blame her and by no means am I criticizing her. In fact, there is probably a hint of truth in what she said. I'm sure there are some people that would be nervous meeting some of the teens at the group home, as harmless as they are. As I mentioned before, what we don't know or understand can be frightening. Sometimes I get scared when Maxin starts sobbing out of nowhere and I can't figure out what's wrong, or when Lele starts smacking his face until he bleeds, or when Ningning is so euphoric that she appears to be delirious and manic. Now that I think about it, I get scared a lot, actually. Maybe the teachers do too, once in a while. I just don't believe it is an issue we should joke about.

Homework

2009-10-27T23:15:00.005+08:00

I assumed that I wouldn't have to do any more homework post-college, but I was wrong. I have an assignment for tonight, due tomorrow, that will require a bit of work. Wu Laoshi, manager of the group home, wants all volunteers and employees to write a 3-sentence summary on our impressions of and experience so far at the group home. Okay, so I was exaggerating... it really isn't that much work, but how am I going to fit over a month's worth of thoughts, observations, opinions, praises, complaints, and questions into 3 sentences? It's a good thing that there is no such thing as a run-on sentence in Chinese...

A bad headache

2009-10-26T14:24:00.006+08:00

Poor Ningning... she seems to be feeling unwell today and can't tell anyone exactly what is bothering her.

I noticed that something was wrong when I watched her sit down on the sofa in the gym room. She made a face, which wasn't anything out of the ordinary (she makes lots of faces all the time)... but this particular face she was making looked like she was in excruciating pain. Then she grabbed both arms of the sofa with her hands and her whole body started to shake a little! It would've been easy to dismiss this as one of her odd behaviors of stereotypies, but her face just looked so distressed. I tried to ask her what was wrong but she didn't say anything. I then ask her if something hurt (痛不痛？), and she replied "hurts" (痛）。I asked her where it hurt (哪里痛？), and she pointed to her head. I touched her forehead, but it didn't seem abnormally warm so I don't think she has a fever. She may have been having a migraine because a few minutes later she was off the couch and seemed to be fine. Unfortunately, the same thing happened a few more times throughout the morning. The teachers decided that she was having bad headaches and sent her to bed.

We all get headaches once in a while, so I'm not too worried. The reason why I'm sharing this story is because I still can't imagine how frustrating it must be not being able to communicate. If I had a bad headache, I would probably just tell one of my roommates, who would tell my supervisor at the group home, then I would lie down and rest a while. Poor Ningning had to wait patiently all morning for someone to actually realize that something was wrong and do something about it! This one characteristic of low-functioning autism might just be the most handicapping of them all.

Robots & autism

2009-10-24T11:22:00.004+08:00

I am a big supporter of one-on-one, personal interaction when working with children with autism. I've found that each child has completely different needs, learning rates and styles, and comforts/discomforts, and so I've found it most effective to work directly with them in a compassionate, patient manner...

...which is why I was surprised when I stumbled upon some news online about the value of using robots to work with children with autism! Apparently, the robots can be programmed to interact with anxious, socially withdrawn children, and can help them experiment with new social behaviors. Click here to read the article!

OCD?

2009-10-23T22:33:00.006+08:00

After spending just over a month at the group home, my roommates and I have all noticed that the youngest resident at the group home, 10-year old Baiqi, has been displaying some obsessive-compulsive behavior. At first we thought he was just fussing around, playing with and rearranging things…. But after a while we have definitely noticed a pattern in his behavior. He needs to rearrange everything, and gets very upset if someone prevents him from doing so. For example, whenever someone uses the bathroom, he goes in immediately after they come out to make sure that the trashcan is still in the corner and that all the toothbrushes and cups are all facing a certain way. Before bedtime, he gets out of bed several times to make sure everyone’s slippers are paired together and placed under the beds. He runs around and does all of this pretty quickly, so it doesn’t cause too much impairment in his daily life… its just a bit annoying, really.

Some of the teachers let him rearrange all he wants. They joke that he helps to keep the group home tidy! Other teachers get frustrated by his constant jumping up to rearrange everything, and they try to hold him back, which usually doesn’t work. There still is no consistent approaching to dealing with his behavior. My roommates and I were trying to figure out what the cause of this behavior could be (“treat the cause, not the symptoms”). Saima suggested that it might be because Baiqi has two different homes and lives two quite separate lives: weekends at home with his family and weekdays at the group home. His need to rearrange things might stem from a deeper need to have more consistency in his life. She also explained that this kind of stereotypy can be common in children with autism.

In general, obsessive-compulsive disorder (OCD) is an anxiety disorder. Those with OCD tend to be anxious about an aspect of their lives – they may have obsessive thoughts about something going wrong that is out of their control. They therefore attempt to reduce anxiety by engaging in compulsive behavior, rituals that they do have control over.

Saima suggested that we work on relaxation/mindfulness techniques with Baiqi once our sensory room is finished. This is definitely something I’d like to pursue, since I’ve been interested in learning about mindfulness myself. Hopefully once Baiqi realizes that there is a place in the group home where he can go to relax, he’ll be a little less anxious and have less of a desire to rearrange and order everything.

1,000 hits

2009-10-22T00:59:00.001+08:00

I recently checked my website stat counter and was thrilled to see that I officially have more than 1,000 hits to my blog! I would like to express my gratitude to all *autismabroad* readers. Your interest in and support for what I'm doing means the world to me. Thank you so much!

The parents

2009-10-20T22:39:00.001+08:00

I've been thinking a lot about the parents of the kids and teens at Stars & Rain and have found some interesting differences. I'm not sure if this is purely a Chinese phenomenon, or if it's something that all parents of children with autism experience... but I've definitely noticed a striking distinction between parents of young, recently-diagnosed children, and those of teenagers with autism.

The parents of the kids at the Stars & Rain kindergarten all have a few things in common:

1. They are overwhelmed - (Who wouldn't be in an 11-week intensive training program with 60 other families?)
2. They are energetic - (They go above and beyond to do whatever they can for their kids... sometimes with expectations that are a bit too high)
3. They are worried - (What will happen to their kids if they aren't accepted into the education system?)
4. They are desperate for help - (They will do anything for their kids to become more "normal")
5. They are hopeful that the autism will soon "go away" - (Some parents have asked if there is a medicine their child to take that will "cure" their autism or change their personality!)
6. They are still struggling to understand - (why their children act the way they do, how to teach them to speak or to become more independent...etc.)

In contrast, I have noticed one main thing about the parents of the teens at the Stars & Rain group home: they have accepted their children for who they are. They no longer want to "cure" the autism or "fix" their child's personality. They might not understand everything about autism, but at least they understand their child. They understand and accept their child's likes and dislikes, their various forms of expression, their quirky behavior... which is so comforting and touching to see. I wonder if Stars & Rain has organized any support groups that bring these two groups of parents together?

Laundry

2009-10-20T00:02:00.001+08:00

I am really happy about how a certain situation this afternoon turned out... it was during the time set aside for the teens to practice independent living tasks (e.g. doing laundry, folding clothes, mopping the floor, making beds, wiping down tables). Each volunteer usually supervises one or two teens to make sure they complete the task assigned. Today, one of my roommates was paired with Maxin.

Maxin has good days and bad days. On good days, he cooperates, follows instructions really well, doesn't cover up his face with his clothes, and smiles a lot. On bad days, he hides in corners and in his shirt, he doesn't listen to anyone, shuts himself off with what sounds like hypnotic chants, and sometimes cries for what appears to be no reason. Today was a bad day.

Maxin was supposed to be gathering all the clean laundry hanging outside, but today he absolutely refused to do anything. The volunteer gave up working with him and focused on another child who needed his help. We've found that sometimes it's better to give Maxin some space. After observing him for a little while and getting frustrated that he was getting nothing done, I wanted to try working with him myself. I did my usual thing - talked to him in a slow, soft voice... that didn't work. I tried leaving and coming back (which has worked a couple times in the past)...still no success.

Finally, I tried physically helping him - directly taking the hanger off the clothesline and helping him pull the shirt off, both of which he can do himself when he's in a good mood. Even though he needed my help, he was able to take the shirt from me and put it into the hamper. I was excited to see this...this small, simple task was better than nothing at all. Eventually I started to do less and less for him until all I had to do was point to a hanger and he would, very slowly, take it off the line and pull off the shirt, all by himself. What he can usually do in 5 minutes or less took a bit more than half an hour... but still, the task was done! I felt like a proud mom when he put the last piece of clothing into the hamper. Oh life's simple pleasures...

Jet Li's next movie

2009-10-17T20:00:00.004+08:00

I just found out that Chinese movie star Jet Li was inspired by Taotao (Tian's son) and wants to make a movie about autism! He will be playing the father of an autistic child in the film. All the female teachers at Stars & Rain are hoping that he will visit the center sometime soon in preparation for his role :)

Romance at the group home

2009-10-16T00:03:00.004+08:00

Since all the teens at the group home are either going through or about to go through puberty, hormones are racing and crushes are developing. This is actually a pretty serious issue, since it is hard to explain to them why their bodies are changing or why they may feel the way they do. We have to be especially careful about letting Ningning get physically near any of the boys, in order to prevent anything further from happening. But something happened today that made it difficult for me to keep a straight face...

Ningning has had a crush on Huyang since I started working at the group home. I was told not to let her sit near him or hold hands with him. Huyang is actually pretty good about this - he knows that he will be scolded if he lets her get too close to him so he actually moves away himself. Just yesterday, the two of them happened to be sitting side-by-side on the swing... Huyang was staring off into the distance like he usually does, while Ningning sat next to him, gazing lovingly at him.

Anyway, during breaktime today, our chubby Lele came over to me, wanting an area of his back scratched. I couldn't get the right spot, so he became impatient and took off his shirt. There he was - shirt off, big belly hanging out... and you should've seen Ningning! She darted over from across the room and checked him out. When he went to sit on the couch, she followed him with that loving gaze. He took off his shoes and socks (he loves the feeling of bare feet), and Ningning immediately picked them up and put them back on his feet! I'd never seen her act so quickly and with so much care. Before we could do anything about it, she'd planted a big, fat kiss on his cheek! Ah, young love.

"Don't sing."

2009-10-14T22:20:00.001+08:00

The teens are getting a bit restless since today was their 5th day at the group home. They usually stay for 5 days each week, from Monday to Friday (they get picked up Friday afternoon). But this week, they've been here since last Friday to make up for time lost during the long national holiday break. Even though this has been explained to them each morning, it seems like they are still a bit confused. It's especially difficult and frustrating for people with autism to experience a change in routine... which was becoming evident today when some of them became hysterical for no reason (laughing, crying), "forgot" how to use the toilet, and couldn't sit through our one-on-one skill-building sessions.

Despite all this, I still had some good laughs today. The teacher that usually works the evening/night shift was home sick today, which meant that I got to work the evening shift again! During my evening stroll with Lele, I started to sing some English songs out loud. I guess I didn't realize how bad I sounded until Lele put his arm around me and gently said, "不唱，不唱“ （Don't sing, don't sing). I tried a different song, but he just did the same thing. It seems like from now on he'll be the only one singing when we walk together!

Later tonight, at bedtime, Julian tucked Lele into bed and started to massage his hands. Since Lele has a self-injury problem (he hits his head and bites his hands), we are trying to teach him to care for these parts of his body instead of hurt them. For the last week or so, whoever worked the evening shift has been massaging Lele's hands and forehead with baby oil. He seems to really like it, but you should've seen him tonight! He was lying in bed, eyes closed, completely relaxed, with one hand behind his head and the other getting massaged... he looked just like a king getting royal treatment!

Psychology in China

2009-10-13T22:55:00.001+08:00

My roommates and I had dinner tonight with a trainee from the group home. His name is Li Shuai, he is our age (21) and is really nice and down to earth. To be honest, it hasn't been easy making Chinese friends since I've been here. Meeting locals that are my age and live in or near the village is hard enough. The few that I've met have been a bit hard to truly connect with because, in my opinion, they are either a) overly enthusiastic about meeting a foreigner and try a little too hard, or b) they keep to themselves and are not at all interested in getting to know us.

So the four of us were especially excited/relieved when we met Li Shuai, who treats us just like he would any other friend. He just finished college and is at Stars & Rain finishing up a training program to become a teacher at the center. We all think he would be a great teacher - he is super patient with the kids and he has also has a great sense of humor about it all, which is always a bonus.

At dinner he told us that he studied psychology in college and is very interested in eventually becoming a clinical psychologist. That was particularly exciting for me to hear since the study of psychology (心理学，literally "study of the heart") is a recent development in China. In the past, the notion of "mental health" was unheard of in China; those with mental disabilities or mental illnesses were looked down upon and hidden away by their caregivers. Having any sort of mental/emotional problem was a loss of face (很丢脸). Even family members of a person with a mental illness were "shamed".

According to Li Shuai, the idea of mental health is changing in China. Although psychology is still not a popular topic, it seems like more and more people are choosing to study it and consider it. Being the psych nerd that I am, I can't think of anything more fascinating to study than the mind and how it influences the way we behave :)

Why?

2009-10-12T23:57:00.001+08:00

I treated myself to a mani/pedi today and chatted with the lady doing my nails. She asked me what I was doing in Beijing so I told her a bit about my work at Stars & Rain. She then asked, "Why do people have autism"? Before I could answer, she asked if it was due to parents neglecting their children at an early age, forcing the kids to develop odd behaviors to keep themselves occupied! I was shocked that she even considered this, and I still don't know if it's a common view among Chinese or if it was just her own ignorance (I hope it's the latter). I tried my best to explain that children with autism are usually born with the condition, but I didn't know how to say "genetic" in Chinese... boo. I really should invest in a Chinese-English pocket dictionary...

A mother's visit

2009-10-12T00:31:00.001+08:00

The mother of one of the teens at the group home, Ningning, spent the day with us. She just wanted to observe and hang out since she's normally at work during the week when Ningning is at Stars & Rain. It was really nice to watch her interact with her daughter - not at all in the way that I imagined. I guess since I'd never met any of the teens' parents before, I had imagined the worst- that they completely overindulged their kids and let them do whatever they wanted (e.g. sit around all day and eat...which I'm sure is what Lele would choose to do) or are very strict and impatient. Instead, Ningning's mom just kept praising her daughter and showing affection; she hardly ever lost her patience or raised her voice. It was so refreshing to see that, since some of the teachers/trainees at the group home are often quick to yell.

I had a chance to chat briefly with Ningning's mom while the teens were taking a nap... again the language barrier became an issue when I couldn't express everything I wanted to say to her and also had a hard time understanding everything she was saying. Of course, her facial expression spoke for itself. She just looked so tired and drained. She told me that taking care of Ningning is exhausting. She explained that Ningning was 3 when they enrolled in the 11-week course at the Stars & Rain kindergarten. Since then, she's had different babysitters taking care of her and trying to teach her while her parents were at work. Two years ago, she moved into the Stars & Rain group home. She's 15 now. Her parents have thought about having another child (in China you can apply to have another child if your first child is a girl) but they were too burnt out with Ningning. I wanted to console her but there wasn't much I could say to help except nod and try to sympathize with her situation. I was afraid to ask her what they plan to do when Ningning turns 18 and is too old to stay at the group home... What then?

My moment

2009-10-10T20:43:00.002+08:00

Spent another great day with my new buddy. I'm trying to teach him how to say "hold my hand" (姐姐拉手）when he wants to hold my hand. Right now he can repeat it when I say it first, but it would be awesome if he could make the verbal command on his own.

I had a little moment today with the teens that I'll never forget... I was sitting in the front yard on a large porch swing, holding hands with Lele. Maxin, who usually completely isolates himself in his own world (pulls his clothes over his head to hide and stays in corners), came over to us and started pacing back and forth. I asked him to join us on the swing and surprisingly, he did! Then Baiqi, the youngest at the group home and who also tends to keep to himself, walked over to us and stood in front of the swing. I asked him to join us too, and he squeezed himself in-between me and Maxin. Maxin grabbed my elbow, Baiqi put his head on my shoulder, Lele was cradling my hands, and we all swung back and forth for a few minutes, until Wu Laoshi (the director of the group home) called everyone in for naptime. It was so relaxing and peaceful... it felt so safe. And it was really nice to see that they felt comfortable enough with me and with each other to squish up together! It's moments like this that I live for. They just make me want to learn even more about the mystifying condition that is autism.

Double shift-ing

2009-10-09T22:03:00.002+08:00

After a week-long break for China's National Day holiday, I was really happy to start working at the group home again today. I'd forgotten how much fun it was to work with these kids, plus after being sick in bed for a few days, it felt great to get up and do something productive! On top of that, I worked a double shift today - my roommates needed someone to cover for them while they went to a National Day party at the German Embassy tonight. I was happy to do it since I'd never worked past 4 PM before... this way I would be able to observe and help during the evening/bedtime routine.

I actually really liked the afternoon/evening shift! It seemed a lot more relaxed, a lot less "school-like" than the morning shift. The kids still did chores (such as cleaning their rooms, folding clothes, making their beds, and helping to get dinner ready), but the whole environment was just more friendly and comfortable. For example, we had music playing the whole time.

After chores and before dinner, the kids had "exercise time" - which was absolutely amazing and hilarious at the same time. Who would've guessed that in this small group home in a tiny Chinese village, there would be high-end gym equipment for the kids to work out with? Yup, the group house has a mini-gym, with a treadmill, elliptical, sit-up bench, weights, and bicycle - all donations from the Rotary Club of Beijing. My job during "exercise time" was to help those on the sit-up bench keep track of how many they've done. I was told to help pull them up when they needed my help, which was most of the time. I'm not sure who got a better workout, me or them! They definitely keep them in good shape though, when they could easily let them sit around all afternoon. It was really great to see that.

Bedtime finally came and it was... interesting. Lele and I had been buddies all day - he wanted to hold hands and sing all the time. (He is a bit overweight and when he is happy he just looks like a little smiling Buddha, it's the cutest thing). But when he got into bed tonight, it was so weird... he just kept laughing like a maniac and would hit himself at the same time. I really couldn't tell if he was happy or upset. I rubbed some massage oil into his hands and his forehead (where he hits/bites himself) and he seemed to enjoy it, but it didn't stop him from laughing or hitting. He eventually went to sleep but I'm still wondering why he was acting that way...

Early start tomorrow - gotta get some rest!

Sensory room ideas

2009-10-08T22:17:00.002+08:00

My roommates and I came up with a preliminary plan for the sensory room!

According to the research, it seems like there are three main ideas for creating a sensory room:
• Soothing wall colors
• Subdued lighting
• Uncluttered environment

The sensory room we will be working with is about 1.5 meters wide and 4 meters long...which isn't a lot of space so keeping the environment uncluttered will be a bit challenging. Thankfully there's a shelf in the room behind the door, where we plan to store everything that can be put away.

Here are some basic things we thought of:
• Carpet or mat (comfortable to lie down on)
• Christmas lights & nightlight to give room a soft glow
• CDs hanging from the ceiling
• Textures on the walls
• Painted walls (one dark, the others light)
• Pillows
• CD player to play soft music (for relaxation), or any music (for stimulation)
• Disco ball to hang from ceiling
• A furry/soft throw

We then put together a sensory needs chart for each of the 6 teens in the group home. They all have different kinds of sensory issues - some are hyper/hyposensitive to touch and others are sensitive to sound, etc. These are some of our ideas:

For touch:
• Massage balls, stress balls (balloons filled with sands or flour)
• Body lotion
• Hairbrush (for body brushing, relaxation)
• Tin foil
• Play-doh, clay

For smell:
• Aromatherapy oils
• Stuffed animals sprayed with lavender

For sound:
• CD player - music
• Drums
• Rattles

Our goal is to create an area where the teens can go to relax and enjoy themselves, but also a place where they will be stimulated and learn to recognize their sensory needs. We still have to present our plans to the manager and teachers of the group home and, of course, see what our budget will be. After that, we'll start gathering supplies. We'll need to figure out what things we can get as donations, what we can buy, and what we have to make. So exciting!

Sensory issues in autism

2009-10-08T18:42:00.001+08:00

I have been doing a bit of reading on sensory issues in autism. Here is an excerpt I found to be really helpful, written by Jennifer Davis for the Austim/Asperger's Digest:

"No matter where they fall on the autism spectrum, individuals can have difficulty dealing with seeing, hearing, taste, touch, smell and proprioception – where their bodies ‘fit’ in space. Their senses can be hyper (accentuated) or hypo (less responsive), and can markedly interfere with a person’s ability to communicate, maintain appropriate behaviors and connect with his/her world.

Simple tasks that are easy and enjoyable to us are full of sensory pitfalls to these individuals. Breakfast is a good example. Many individuals who have problems with their sense of touch gag on slimy foods like eggs and oatmeal. Crunchy or hard items may be too painful to eat. They may not like the feel of food in their mouth at all. Food may smell awful to individuals who have a heightened sense of smell, and individuals who have sensitive hearing may not like the sound of food crunching as they eat it.

Getting dressed can have many similar issues. Wearing clothing can be painful to an individual with tactile sensitivity. Different fabrics or new fabrics can feel intolerable. Heavy shoes can interfere with the sense of balance. Clothing that crinkles or is shiny can be distracting and make an autistic person lose focus on what s/he is doing."

And so on. Basically, things we take for granted during our daily routines can be disorienting, frustrating, an even painful for an individual with autism. Temple Grandin also had an excellent way of describing sensory issues in autism:

"The world of the nonverbal person with autism is chaotic and confusing. A low-functioning adult who is still not toilet-trained may be living in a completely disordered sensory world. It is likely that he has no idea of his body boundaries and that sights, sounds, and touches are all mixed together. It must be like seeing the world through a kaleidoscope and trying to listen to a radio station that is jammed with static at the same time. Add to that a broken volume control, which causes the volume to jump erratically from a loud boom to inaudible. Such a person's problems are further compounded by a nervous system that is often in a great state of fear and panic. Imagine a state of hyperarousal where you were being pursued by a dangerous attacker in total chaos. Not surprisingly, new environments make low-functioning autistics fearful."

Luckily, teachers and caregivers can accommodate the sensory needs of individuals with autism by creating a simple "Sensory Safe Haven" or "sensory room". This is a place to go that is easy on the senses, and even a little bit fun. It is not necessarily a place for learning as much as it is a place to "reintegrate" or come back to one's self, to de-stress and regain composure.

My roommates and I were encouraged by Saima to create a sensory room for the teens at the group home, a project that we're all very excited to get started on. We've been doing some research independently, over the past few weeks, and tonight we plan to get together and discuss what we've found.

Saima's reflections

2009-10-07T19:30:00.003+08:00

I was really excited to receive an e-mail from Saima, the British clinical psychologist who had visited Stars & Rain. In her e-mail, she reflected on her trip to China and some cultural issues she noticed while working at the autism center. I wanted to share some of her thoughts:

"The dilemma remains that there are no laws to enforce the weak policies on the rights, care and educational needs of children with autism or learning disabilities in China. The child with autism is viewed as having strange behaviours which disrupt the learning potential of 'normal' children, this disruptive 'abnormal' behaviour is unacceptable in society because it breaks social order. Thus parents believe that they must change the child's behaviour. There is no room for accepting difference at home because there is no acceptance of difference in schools (there are no special schools or inclusive education in mainstream schools). There is no acceptance of difference in schools because there is no acceptance of difference in society - there is no possibility of creating inclusive education because there is no law supporting the current weak policies that encourage, but do not enforce, inclusive education. With all of these barriers in front of the parents they end up focusing their efforts on changing the child - they become inward looking either blaming themselves for the child's problems or in-time blaming the child. They are in fact accepting society's rejection of the child. I never stopped talked to the parents about not internalising the 'problem', advocating for their child and joining together to shake society up... a little.

However, words are easy. I was shaken up when a parent of a young girl (of the 60 children attending the school 8 were girls) asked me how she might go about changing society to accept her daughter. The nursery in her province will not accept her because she cries when she does not want to do something and becomes unco-operative. The mother will give up her job in order to care for her daughter until she reaches school age in the hope that maybe by then her 'behavioural problems' will have reduced and a mainstream school will accept her. The mother was worried about their coming financial strain, relying on her husband's income, and I could sense that she knew that a mainstream school is not likely to accept her - though she never said that. I was quite stuck with how I might help this parent to gain some agency and shift things in society to make a little room for her daughter. I didn't come up with anything very helpful. Somehow motivating a room full of parents had been easier than responding to the reality of this one parent.

I think it was then that I understood why Chi was working so hard for the parents and always busying herself in conversations with them... From then on my sense of commitment and focus also changed to the parents, rather than the teachers. We encouraged the parents to ask us questions and talk to us about their situation and their concerns for their child. We of course got the frustrating questions about how best to normalise their child, but we also had some thoughtful and inspiring conversations. For example, there was one parent who helped her child to overcome a fear of ceiling fans that had prevented him from entering the classroom. She talked to her child about his fear, she drew pictures with him about the fear to help him feel that he could 'master' this, and, most importantly, she talked to him to understand him. It was not long before he was a happy little boy in the classroom. Another example, there was a father who was always affectionate with his child and balanced in setting boundaries and encouraging him to fulfill his potential. This father told us that he always adapts the methods that the teachers teach the parents to find the best way to support his child. Ah this was a breath of much needed fresh air - we loved this father, and his little boy, and couldn't help but constantly praise him!

Overall, however, the children of Stars & Rain are unfortunate to inherit a society in which the 'problems' of the child are in conflict with the order and stability of the whole society. Helping those with disabilities is not seen as beneficial to the community. A behavioural problem in one child raises concerns, even in the parent of the behaviourally problematic child, about the impact on others. A community, social perspective, therefore, is not necessarily mutually supportive."

Thank you, Saima, for letting me share this!

A silent epidemic

2009-10-06T23:55:00.002+08:00

I just found out - from the Autism Research Institute newsletter and from CNN - that yesterday, the Maternal & Child Health Bureau of Health Resources and Services Administration (HRSA), US Department of Health and Human Services released a study evaluating the number of children in the U.S. who currently have an Autism Spectrum Disorder (ASD) diagnosis. The report is titled "Prevalence of Parent-Reported Diagnosis of Autism Spectrum Disorder among Children in the United States", 2007, published in a journal called Pediatrics.

The study evaluated data from a National Survey of Children's Health (NCHS) in which 78,000 U.S. households were surveyed to estimate the prevalence of autism spectrum disorders. The households were asked if their child (ages 3-17) "currently has autism, Asperger's Disorder, pervasive development disorder, or other autism spectrum disorder." Here are the main findings:

- The NCHS survey estimated the prevalence rate of ASD to currently be 110 per 10,000 which equates to 1 in 91 children ( 1 in 57 boys) between the ages of 3 and 17.

- Previous prevalence data from the Center for Disease Control and Prevention's Autism and Developmental Disabilities Monitoring (ADDM) Network reported the average rate of autism among eight-year-olds was 67-per-10,000 in 2000 (the 1992 birth cohort), and 66-per-10,000 in 2002 (the 1994 birth cohort). Data from the NCHS was from the birth cohort born from 1990 to 2004.

- For the first time the health survey also asked if the child who was diagnosed with ASD currently has the disorder, and nearly 40% ( 38.2%) responded NO. This finding supports recent research that children diagnosed with autism can recover from the disorder with appropriate interventions, both medical and behavioral.

- Investigators also found that non-Hispanic black and non-Hispanic multiracial children had 57% and 42% LOWER odds of having ASD than non-Hispanic white children, and that children whose parents had less than 12 years of education had twice the odds of NOT having an ASD dx child than those with higher education. Another interesting finding is that those who lived in the Midwest and Northeast had higher odds of having ASD than children in the West. Such demographic and geographic disparities deserve further scrutiny for etiologic risk factors.

- When investigators broke the data down a little more by age, the odds of having a child with ASD were 54% greater for ages 6-8 years (birth years 99-01) and 83% greater for 9 to 11 years (birth years 96-98). Note that the older birth cohort was exposed to larger amounts of ethyl mercury than the younger birth cohort.

As a result, the Autism Research Institute has called for an immediate Federal response to the new data with the same amount of urgency and resources that have been dedicated to H1N1 preparedness. According to Jane Johnson, Director of the Autism Research Institute's Defeat Autism Now! Program "a silent epidemic has been sweeping our country for years and this new prevalence data dictates that Autism be declared a national emergency; no stone should be left unturned in determining what is driving this international epidemic and what can be done to help those affected restore their health."

Even though I doubt that people will respond to this information as they did to H1N1, I hope that this will at least help to encourage even more people to view autism as an important and worthy cause.

To read the CNN article, click here.

The autistic brain

2009-10-05T20:33:00.001+08:00

Temple Grandin, author of Thinking in Pictures, had an interesting way of describing how the brains of people with autism are "wired" differently than ours:

"Scans of autistic brains have indicated that the white matter in the frontal cortex is overgrown and abnormal. Dr. Courchesne [of UC San Diego] explains that white matter is the brain's 'computer cables' connecting up different parts of the brain while the gray matter forms the information processing circuits. Instead of growing normally and connecting various parts of the brain together, the autistic frontal cortex has excessive overgrowth much like a thicket of tangled computer cables. In the normal brain, reading a word and speaking a word are processed in different parts of the brain. Connecting circuits between these two areas makes it possible to simultaneously process information from both of them. Doctors Courchesne and Minshew agree that a basic problem in both autistic and Asperger brains is a failure of the "computer cables" to fully connect together the many different localized brain systems. Local systems may have normal or enhanced internal connections but the long distance connections between the different local systems maybe poor."

Grandin also uses visual symbol imagery to describe how different parts of the brain communicate with each other:

"Think of the normal brain as a big corporate office building. All the different departments such as the legal, accounting, advertising, sales, and the CEO's office are connected together by many communication systems such as e-mail, telephones, fax machines, and electronic messaging. The autistic/Asperger brain is like an office building where some of the interdepartmental communication systems are not hooked up. Dr. Minshew calls this underconnectivity in the brain. More systems would be hooked up in an Asperger brain than in the brain of a low-functioning individual. The great variability in autistic/Asperger symptoms probably depends on which 'cables' get connected and which 'cables' do not get connected. Poor communication between brain departments is likely the cause of uneven skills. The limited number of good cables may connect up one area and leave the other areas with poor connections."

The Horse Boy

2009-10-01T16:30:00.003+08:00

If you're in the L.A. area...

Check out a new film called The Horse Boy! Directed by Michel Orion Scott. Produced by Rupert Isaacson, father of Rowan Isaacson, who the movie is about.

ABOUT THE HORSE BOY:

How far would you travel to heal someone you love? An intensely personal yet epic spiritual journey, The Horse Boy follows one Texas couple and their autistic son as they trek on horseback through Outer Mongolia in an attempt to find healing for their son. When two-year-old Rowan was diagnosed with autism, Rupert Isaacson, a writer and former horse trainer, and his wife Kristin Neff, a psychology professor, sought the best possible medical care for their son—but traditional therapies had little effect. Then they discovered that Rowan has a profound affinity for animals—particularly horses—and the family set off on a quest that would change their lives forever.

Directed by Michel Orion Scott, The Horse Boy is part travel adventure, part insight into shamanic healing and part intimate look at the autistic mind. In telling one family's extraordinary story, the film gives voice to the thousands who display amazing courage and creativity everyday in the battle against this mysterious and heartbreaking epidemic. The filmic companion to Isaacson's best-selling book of the same name, and a festival favorite, this ravishing documentary odyssey gives insight into how, in life's darkest moments, one can find the gateway to joy and wonder.

There will be a special screening of the film on Wednesday, Oct. 7, 2009 at 6:00 PM at the USC School of Cinematic Arts, Room 112, George Lucas Building, 900 W. 34th Street, Los Angeles, CA 90007. The screening will be followed by a Q&A with director Michel Orion Scott. Admission is FREE.

The film officially opens at Landmark's Nuart Theatre on Friday, October 9th, 2009.

To learn more about the film and to view the trailer, click here.

Thank you, Claudia, for thinking of me and sharing this info!

Eat at home

2009-09-29T21:58:00.003+08:00

During lunchtime everyday, the teens at the group home usually get a little treat: they take a quick stroll down to the marketplace of Dongxu and have lunch at one of the three major restaurants in the village, just like everybody else. They have had this privilege of eating out for quite a while. However, the manager of the restaurant called yesterday to inform us that he would be delivering lunch to the group home from now on. The teens are no longer allowed to eat at the restaurant because they have been "scaring away" other customers. The restaurant has received complaints and is losing business.

I was really sad and disappointed when I heard the news. On the one hand, I can understand how strangers would feel uncomfortable: Le Le hits himself and likes to rock back and forth... Ning Ning stares off into space, acting completely emotionless, and sings out loud... Yao makes strange, loud noises and gets up and runs out the door when he is overly excited... and Xin likes to pull his shirt over his head and wrap his hands together with cloth, which may look a bit strange (although he still manages to use his hands normally). On the other hand, I know that these kids are perfectly harmless (sure, Yao smacks people to communicate but it doesn't hurt and he would NEVER do that to someone he didn't know) and it makes me so mad that people judge them to be annoying or dangerous just by their appearance and quirky behavior.

I don't blame the customers. This just shows that what we don't know scares us. I absolutely believe that if they knew what autism was and how it manifests itself, or maybe if they even took a minute to meet the kids, they would not feel the way they do. This is why autism awareness is so important. I am writing this blog not just because I want to share my experiences in China. I am writing it also with the hope that if you are ever walking down the street and see a person acting in a way that may seem abnormal, you might be able to recognize some behaviors as characteristics of autism and you will realize that the person isn't crazy or weird or dangerous or anyone to avoid at all.

Thinking In Pictures

2009-09-29T13:48:00.002+08:00

I’ve started to read another book, called Thinking in Pictures by Temple Grandin, Temple is an animal scientist who has designed a third of all the livestock-handling facilities in the United States. She also travels worldwide to give lectures on autism, because she herself has autism.

Her book is so great because it provides first-hand information about what it is like to have autism. This is especially fascinating since so many people with autism are unable, in one way or another, to express how they feel and the way they see the world. As renowned neurologist and author Oliver Sacks put it, “Temple Grandin’s voice came from a place which had never had a voice before.”

I’m less than halfway through her book but there’s already so much I want to share on my blog! The first thing I wanted to share from Thinking in Pictures was Temple’s memory of her childhood, particularly her inability to talk:

“The first sign that a baby may be autistic is that it stiffens up and resists being held and cuddled. It may be extremely sensitive to touch and respond by pulling away of screaming. More obvious symptoms of autism usually occur between twelve and twenty-four months of age. I was my mother’s first child, and I was like a little wild animal. I struggled to get away when held, but if I was left alone in the big baby carriage I seldom fussed. Mother first realized that something was dreadfully wrong when I failed to start talking like the little girl next door, and it seemed that I might be deaf. Between nonstop tantrums and a penchant for smearing feces, I was a terrible two-year-old.

At that time, I showed the symptoms of classic autism: no speech, poor eye contact, tantrums, appearance of deafness, no interest in people, and constant staring off into space. I was taken to a neurologist, and when a hearing test revealed that I was not deaf, I was given the label ‘brain damaged.’ Most doctors over forty years ago had never heard of autism. A few years later, when more doctors learned about it, that label was applied.

I can remember the frustration of not being able to talk at age three. This caused me to throw many a tantrum. I could understand what people said to me, but I could not get my words out. It was like a big stutter, and starting words was difficult. I can remember logically thinking to myself that I would have to scream because I had no other way to communicate.

When left alone, I would often space out and become hypnotized. I could sit for hours on the beach watching sand dribbling through my fingers. I’d study each individual grain of sand as it flowed between my fingers. Each grain was different, and I was like a scientist studying the grains under a microscope. As I scrutinized their shapes and contours, I went into a trance which cut me off from the sights and sounds around me.

Rocking and spinning were other ways to shut out the world when I became overloaded with too much noise. Rocking made me feel calm. It was like taking an addictive drug. The more I did it, the more I wanted to do it. My mother and my teachers would stop me so I would get back in touch with the rest of the world. I also loved to spin, and I seldom got dizzy. When I stopped spinning, I enjoyed the sensation of watching the room spin.”

Click here to visit Temple Grandin’s personal website.

Patience is key

2009-09-28T18:20:00.001+08:00

My friends and family know that I can be pretty impatient sometimes... especially when it comes to things that I am really excited or passionate about. Working with Ning Ning today reminded me of the importance of being patient, especially when working in this field.

Today was my first "real" day of working at the group home, since on Thursday I was shadowing Saima and Friday was a half-day. Today was therefore the first time I spent an entire day working one-on-one with someone, which happened to be Ning Ning. She is a really sweet and gentle girl and she loves to sit on swings and to draw. However, she is also incredibly slow when it comes to completing tasks because she gets distracted very, very easily.

Here's an example: Before naptime today, I watched her brush her teeth. The entire process took more than 30 minutes. She first turned the tap on and played with the water for about 5 minutes. Then she filled her glass with water and whirled her toothbrush around the glass for about 10 minutes. Putting toothpaste on the toothbrush took 5 minutes. Brushing her teeth took about 20 minutes - she was so thorough, I'd bet she's never had a cavity. Of course after brushing she had to rinse and clean her toothbrush, which took another 5 minutes. I just stood there the whole time since she refused to let me help with anything. I had to keep reminding myself that just the fact that she can brush her teeth independently is something to be happy about, no matter how long it takes.

I was also reminded of something that Saima told me before she left - working with and educating people with autism is a long process and you've got to wait quite a while before you see any changes. You have to set small goals (which may be as simple as making eye contact) and work step-by-step. I realized that I might not see any changes or improvements in Ning Ning or in any of the other teens before I leave, which is a bit difficult for me to accept. I just have to remember to set realistic goals for them and try my best to help them reach those goals, even if I won't be there to witness it myself.

The Great Wall

2009-09-28T01:11:00.001+08:00

I went on a day trip today to the Great Wall - we left at 8 AM and didn't get back till 8 PM! We took a bus to the Hebei province, where we began climbing the Jinshangling section of the Great Wall. It is supposedly the best preserved section of the Great Wall, with many original features. We walked towards Beijing, where the Simatai section of the Great Wall begins. Because we went with locals (Tian, Taotao, and some teachers from Stars & Rain), we were able to get to an area that had few tourists. Still, we across some tourists... and one of them happened to be wearing a Middlebury t-shirt! What are the chances?! That's not all - right before we finished our hike, I came across a guy from Pepperdine who apparently knows my friend from middle/high school, Patti! It's a small world after all.

We climbed about 11 km (a bit more than 6 miles) in 6 hours, although it felt like much, much longer with all those stairs! Here are some shots that I took throughout the day (thanks to Dan for helping me post them!):

Walking to the Great Wall.

Entrance to the Jingshanling section of the Great Wall.

There it is!

At the top of the 1st watchtower! Out of about 20 that we climbed... out of 10,000 total.

Clauss & Shushu taking a smoking break

Taotao leading the pack

Breaking for lunch.

Tian as our tour guide. This was her 8th time climbing the Great Wall!

Dents from bullets along the Great Wall.

The group! Julian, Li Laoshi (Pete), Shushu, Clauss, Me, Ian, Tian, Bjoern, and Wu Laoshi (manager of the group home) with his adorable daughter. Taotao isn't in the photo, he was way ahead of us!

Crossing the bridge to get to our last watchtower.

We went on the zip-line!

With Austin, a new friend. This is for you, Patti!

water bin = success

2009-09-26T14:34:00.004+08:00

As for my 2nd day at the group home.... everything seemed to go as we hoped it would! One of the ideas brought up at the meeting with Saima was to have a bin of water for the kids to play with during free time. We noticed that most of them seemed to enjoy playing with water, but would do so in an unacceptable way (going to the bathroom constantly, playing with tap water, experimenting with drool...etc). When we brought the water bin out to the front yard, the kids were SO happy. Le Le, the boy that kept hitting himself, was in SUCH a good mood that he was clapping and singing nonstop! He didn't hit himself once.

I spent some one-on-one time with the girl, Ning Ning. She is nonverbal, but can respond to some questions with simple answers like "Yes, I want to ___" or "No, I don't want to ___". Saima explained to me that it doesn't matter what we communicate about, it is the connection made by communicating back and forth itself that is important. We also realized that Ning Ning can actually recognize characters and write quite a few words! I drew a picture of a flower and she wrote the character for "flower" (花) next to it. She even taught me how to write her name by taking my hand and using my finger to trace it onto my palm. I'm really looking forward to getting to know her over these next few months.

Fridays are half-days since parents come to pick up their kids after lunch. The staff and volunteers had a meeting after everyone had been picked up, and we discussed a few more ideas. It is so exciting to be involved in this project. Unfortunately, it was Saima's last day at Stars & Rain. I really wish she could stay longer, but I will definitely be in touch with her with updates (and probably many more questions!) about our work at the group home.

Bjoern, Ian, & Julian with Saima

pre-National Day security

2009-09-26T14:25:00.001+08:00

October 1st is National Day of the People's Republic of China and security is already getting tight! Online security, that is. Fortunately, I found a way to be able to continue writing on my blog, but I can't include photos or links in any of my posts. I'm still trying to find a way to get around this, but everyone is hoping that things will go back to normal after Oct. 1.

Julian's poem

2009-09-25T08:39:00.000+08:00

This is a poem that my roommate, Julian, wrote about his experience so far at the group home. It was originally written in German but he translated it into English for me:

Robots,
at first sight,
following a given sequence,
smiles and happiness on call,
signs and orders structure their day,
conditioning in perfection.

Yourself,
the trainer, the tamer,
programmer of a human being,
always praising and punishing,
praising and punishing.

Crying for hours,
unable to tell the reason,
searching for love,
for understanding and communication,
repeating all those heard phrases,
without succeeding.

Born into the wrong world,
not here but also not somewhere else,
stuck in stereotypies,
fettered in early age memories.

And yourself,
the only attachment figure in reality.

Then, moments of lucidity,
of total consciousness,
after hours of apparent apathy,
moments of human necessities,
lived out and relished in a free way.

Moments of personality,
untouchable mannerism,
intentionally not conformed to the expectations,
a wicked smile in the face.

Error in conditioning.

Humanity.

Yes We Can

2009-09-24T22:13:00.001+08:00

Today was a busy day, both incredibly overwhelming but exciting at the same time. I visited the group home for the first time, with Saima. It was a fascinating experience because I was able to listen to her thought process and ideas for improving the center. I don’t even know where to begin writing about what happened during the day... there is so much to share!

Just after we arrived, we went on a walk with the teens, two teachers, and one of my roommates, Bjoern. The teens go on a half-hour walk twice a day, which I think is great (I love walking!), but it is pretty difficult for some of the boys who don’t enjoy it. Apparently, yesterday one of the boys simply stopped walking and lay down on the sidewalk, with his eyes closed. He'd had enough and needed a break. But people walking by didn’t know that, and they thought he was dead! It takes a lot of strength to lift him up and get him walking again – I couldn’t do it on my own.

The same boy has self-injurious behavior. He hits his head when he is upset or wants something (usually food). He has done it so often that there are big welts and scabs on his scalp. It is so awful to watch him do that to himself, but there isn’t much we can do about it at the moment because when he goes home on the weekends, his parents feed him when he does it. Whatever progress he makes at school during the week is quickly reversed. They’ve done this for 10 years now, so it has become a habit. I am looking into buying some material to make a soft helmet for him (the ones sold online cost a few hundred US dollars!). We are also going to start rewarding him for NOT hitting himself (by giving him apple slices when he is calm) and tell his parents to do the same. I really hope it works.

When we got back to the center, Saima and I observed the kids during lessons and during free time. We both felt that the kids spent a lot of time waiting around and were often bored. I tried putting myself in their situation (away from home at a young age, not quite sure what you’re doing there, often confused about what is expected of you, and not able to tell others how you feel) – it must be so infuriating!

We had a meeting in the afternoon – my roommates were there, as well as the two group home teachers and the manager of the home. Saima shared her suggestions with them, and they took the constructive criticism really well. They explained that this is the first group home in China (a feat in itself!), and they are always happy to have experts from different countries come and share their advice.

The most exciting part of the day was realizing that in order for Saima’s recommendations to be carried out, we volunteers have to put our hearts into this project. Here are some examples of the suggestions:

1. Find a way to keep the home and academic environments separate. The boundaries between home and school are blurred right now, since both take place in the same building. This is probably what contributes to the teens’ confusion and difficulty with transitions.

2. Closely observe each individual teen and determine his true ability, so that he is not spending time working on a task that is below or too far above his level. Once we find his ability, we should keep challenging him, while giving him free time in-between tasks to just relax and do something he enjoys (which can be anything they want, unless it is self-injurious). One thing that Saima told us to keep in mind was to assume the highest competence, and work backward if needed. So you should assume that a person with autism understands everything you are saying, and if doesn’t appear to be true, then gesture. If that doesn’t work, use symbols and pictures, or model the behavior. If that doesn’t work, then you can guide him physically.

3. Sensory room! My roommates and I are going to help construct a “sensory room” in the basement of the group home, where the kids will be able to go to relax and have an interesting sensory experience. Some ideas we have so far: duvets on the ground, low lighting, glow in the dark stickers on the walls, different textured rugs, crinkly paper, soft music, etc.

4. Saima had a really interesting view on bad behavior. Many parents and teachers tend to punish bad behavior immediately, thinking that a child is purposely doing something wrong. However, there are actually 3 different reasons why a child or teen can exhibit bad behavior: 1) naughtiness, 2) a function of the autism, something they can’t control, and 3) the child is trying to communicate something, such as “I’m hungry” or “I’ve had enough” or “Leave me alone right now”. She told us to keep in mind these three things next time a child is acting out.

5. She also told us to remember that in this situation, we are guests in their home. We should treat them with respect and speak to them in a normal tone voice (no shouting, which is easy to do when you get frustrated while working with them).

There’s SO much to be done, but I think we can make some concrete changes during our time here. Wow... I realized that I’ve just written a short novel and should probably stop with all the details for now. More tomorrow!