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.
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.
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.
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'sone 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 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.
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!!
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.
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.
Those who know me well know that autism has become a significant interest of mine over the last few years. Having had the opportunity to meet many kids with autism and their families in North America, I've become very passionate about this issue. From September to December 2009, I volunteered at Stars & Rain, an autism center in Beijing, to explore how the condition is viewed and treated in Asia. I have used this blog to journal my experiences confronting autism in China and I will continue to write about my thoughts and observations on autism in general. Thank you for visiting! I hope you enjoy this journey as much as I do. - Cordelia
Meeting Temple Grandin!
Blue balloons at a collaborative preschool I work at.
Camp Winston, where it all began.
Some great friends and self-advocates.
Posts
