"Our doctor told me my son would grow out of it"

I have to say that presenting to a room full of government officials in a foreign country can be quite intimidating. Renee and I calmed our nerves by reminding ourselves that what we are advocating for is extremely important and it’s much better to appear confident rather than nervous. Our main goals were to teach them about autism (none of them had heard of it prior to our presentation) and to advocate for their support of Autism Care Nepal (they are an NGO), to require teacher and pediatrician trainings in Nepal, to provide school programs for children who have autism, to be part of the global autism research projects, to provide scholarships for professionals to have training, and to basically advocate for all people who have special needs. It was a very packed room and we discussed the basics of autism, showed videos of our team working with the children at Autism Care Nepal, explained how our school programs and diagnostics work in the US, and showed a video from a United Nation conference about how many countries in the world are making autism research a priority, among other things. We also notified them that Autism Care Nepal already has 150 registrants. 150 children/adults having autism is an extremely high number when most of the country still doesn’t even know the word autism yet. As we described the symptoms and criteria of autism, many people in the room were nodding their head in recognition as if to say that they know a child or adult who reminds them of this. They asked great questions and gave us compliments about the presentation and for teaching them. We emphasized the importance of early intervention and therapies and that autism is not something people just “grow out of” as many of the parents at ACN were told by doctors. Overall, we thought it went really well, but we won’t know for a while if they will act on the things we suggested.

The following day, we headed to the District of Education of Bhaktapur, where we presented to 22 principals from different schools. Again, there were many heads nodding in recognition to the symptoms of autism and a few people shared that they believe the have family members and students with the disorder. Our presentation seemed to be received very well and we were told that we shared “much good information in a short time”.

The next day, Renee and I spend a lot of time at Autism Care Nepal interviewing parents. They were extremely honest and heartfelt as they told their stories and there were a lot of tears shed. There were many common themes during all of the interviews. 1. They were told by doctors that their child would grow out of whatever was wrong. 2. Their child has rejected by schools and he/she is unable to attend school. 3. They felt very alone until they found other parents (mostly through ACN) who were going through the same thing. 4. They have been told by people in the community that it is their fault because they just can’t control their child. 5. Some were unable to get a diagnosis or find out what was wrong with their child until it was past the crucial early years of necessary intervention. 6. They are extremely grateful that Knowledge for People cares enough about them and their children to come all the way to Nepal to help them.

We know that we are just scratching the surface of the support, interventions, and school programs that are so deserved in Nepal, but we are hopeful that we have uncovered something that can’t be ignored.

"Education is kind of a cure. You will at least know how to face the problem" - teacher from a Nepali college

http://knowledgeforpeople.org and http://autismnepal.org

It has been a very successful few days! Training has been going great as the parents and other participants at Autism Care Nepal continue to drink in all of the information they are being given so they can better the lives of their children and of other children. They are so enthusiastic about learning and are so excited to use the strategies and techniques with the kids! Tracy continues to work with an advanced group teaching them VB-MAPP and other important evaluation and communication tools. Christine has been working with the participants to help them understand the sensory system and how occupational therapy can assist children who have autism. There is an occupational therapist from India, Roshan, who she has been working closely with. There are no OT's in Nepal, so Autism Care Nepal has hired him to assist with the children. Heather and Selene have been presenting and training in the area of communication, Liz and Lizzy have been conducting trainings surrounding ABA/Floortime, and Beth and Valorie continue to teach the participants how to set up the center using the TEACCH model. Brayden, our photographer, has been documenting the program for us (these aren't his photos, these are just some we took with a point and shoot...his photos will come later :).

The focus for Renee and I has been on helping to educate the community about autism. Since there is little known about autism, and most people have never even heard of it, the children are often ostracized from the community. Our hope is that with better understanding of the disorder, there will be more acceptance of the children and their family. We also hope to make parents who have a child with autism (and also teachers) aware of Autism Care Nepal and the services they offer. Renee and I had an autism presentation scheduled on Tuesday in a rural village called Nangkhel, but Renee was too ill to go so Christine joined me. Meeakshi, a woman who works at Divyaankur Child Organization in Nepal, picked us up for 40 minute taxi ride. After getting out of the taxi we had to hike up a not-quite-finished (the only road leading to the village) road for an hour. It was a beautiful walk! Some of the children in the villages do the one hour hike every day back and forth for school. At one point, there were 4 or 5 cows running straight for us and behind them was an itty bitty little boy with his herding stick. Meenakshi asked him why he wasn’t on his way to school and he said he had to finish his work first. American kids need to stop complaining about their chores! We finally made it to the school and we were very impressed. They utilize their resources very efficiently and effectively. We attended the monthly parent meeting and the topic was weather or not they should hit their children. It was in all Nepali, so we didn’t know what they were saying most of the time. After their discussion I was introduced and we had a dialogue about autism. They asked great questions and listened intently. This was the first time any of them had heard the word autism, yet there are many children who have it at least in nearby towns. We then observed some of the classrooms and it was really fun to watch.

Yesterday, Renee and I conducted an autism presentation at the Divyaankur Child Organization. The audience included employees of Divyaankur Child, teachers from a local university, other teachers, a nutritionist, and a child psychologist. They are all strong advocates for children who have disabilities and they were very interested in learning about autism, because they said that autism is a new word in Nepal. They are also hopeful that more and more people will begin to understand autism and plan to spread the word. One participant said, "Because children with autism don't look physically disabled, they are punished as normal children, so we need to educate parents and teachers". Parents are often blamed for their child having autism. One person told us that it is widely believed that the parents and/or children are being punished from something that occurred in a past life.

We have two more presentations scheduled for next week. One is to Nepali government officials, which we think is crucial for helping Autism Care Nepal (the only center in Nepal assisting children with autism) to gain support and to be recognized by the government. Autism Care Nepal is an NGO and, as a result, is not recognized by the government. Their hope is to become partners and have a positive relationship with the government, but to continue as an NGO. The second presentation we have scheduled will be for 20-25 teachers.

I will post more later! Thanks for reading :)

We had our first training day at Autism Care Nepal!

Knowledge for People first went to Kathmandu to begin our work with Autism Care Nepal (ACN) in July 2009 and it was so wonderful to be reunited with the families again after two years! Of course, I started crying a few times, but I just couldn’t help it. Seeing their smiling faces brought about so much emotion…they are the reason we have been working so hard to prepare for this trip and to see them face-to-face brings it all to fruition. They deserve to have the knowledge that will help their children make progress. They deserve to have programs in their schools so that their children can learn even more. They deserve laws to protect their children. They deserve to have access to interventions for their children. They deserve to have their children accepted into their own community. These are all things we are continuing to help them move towards during our visits.

They have done so much work on the center and it looks so great. It is also obvious that they have implemented many of the strategies that we suggested for working with their children during our initial training sessions two years ago. I’m just so impressed by the progress they have made!

We had our first training day and it was a combination of presentations and hands-on training with some children. The participants were so happy to have us there and were very eager to learn. It can be a little tricky teaching about interventions to use with children who have autism when we speak different languages, but the translators were fantastic and the participants listened intently and asked great questions.

They provided us with local food for lunch including veggie and chicken momos and fried rice and it was yummy!

Our first day at ACN was another reminder to our team that autism truly has no boundaries when it comes to ethnic background, socio-economic status, geographical location, etc. Autism is autism wherever you go. We could literally pluck these kiddos right out of the center here in Nepal and put them in an autism program in the states and you wouldn’t know the difference between our children in the US and the Nepali children.

We have a lot ahead of us in the next 2 weeks and I’m so looking forward to it. The trainings will continue and Renee and I will be conducting some presentations about autism to community members to help increase awareness, understanding, and acceptance of autism. We are scheduled to conduct several presentations to a group of government officials, teachers, a local village, and at a child development center.

That's all for now. I will continue to update as much as possible. Thanks for reading!