Monday, July 27, 2009

"You are not only helping our families, you are helping our country."

Proud, excited, relieved,overwhelmed, emotional, happy...these are all things I feel as I reflect on the 2009 Knowledge for People project for Autism Care Nepal. I knew that we were going to make a difference, but I couldn't even begin to fathom how powerful this would turn out to be. When Tanya took the stage to give her presentation about parenting a child with autism, the packed room was listening intently. She began with, "My name is Tanya Savko and I am the mother of an autistic child. I am honored to be here to talk to you about my experience. I feel very emotional now; I have a tissue if I cry. Autism is not a tragedy--that is not why I would cry. I would cry because I feel a connection with you. We live very far away; our lives, jobs, and cultures are very different. But, we have one thing in common-our children. No matter where we live, we understand that part of each other's lives." The entire audience was in tears. Yes, the information about autism, therapies, and how to help their children learn and grow is very important, but what we found to be equally important was letting the parents know that there are people out there who know how they feel. There are people out there who have struggled with the same heartbreak of watching their children grow in a way that isn't typical. There are people out there who know their day-to-day challenges. And, there are people out there who, with hard work and determination, have seen tremendous progress in their children. There is hope. They needed to hear that their children deserve the same rights that all other children have. And that they as parents, teachers, and family members, deserve to have to knowledge and resources that they need to help their children. They needed to hear that it is not their fault that their child has autism.

Before Autism Care Nepal, the families here had no one to turn to. Very few doctors here even know what autism is. There are no specialized teachers and there was no therapy, support, or help in sight. There are now 30 families who are members of Autism Care Nepal and we have been told that this is largely due to us coming to Nepal to provide the workshops and presentations. They now have a support network. The dedication, determination, and graciousness of the parents has been astounding. They spent as much time as they could (some parents were there all day every day) rotating through our stations during sessions for other children so that they could here the information about PECS, sensory integration, visual schedules, ABA, Floortime, and social stories over and over again. They were like sponges taking in this crucial information. They weren't only doing it for their own children, but for the children of other parents, as well. The word about autism in Nepal is spreading. There was an article about ACN and our KfP visit in the Kathmandu Post the day after our presentations!!

We have been so blown away by the kindness and appreciativeness of the parents. Not only have we given them the knowledge that they needed, but we have truly made life-long friends. At the conclusion of the presentations on Saturday, the core members of ACN provided us with formal appreciation and thanks. Hem Baral (one of the founders) gave very touching speeches about each of our KfP team members. They presented us with plaques and beautiful shawls. They made us cry with happiness and success. I get so choked up thinking about it.

In the evening on Saturday, the parents who are the core members (6 couples) took us to dinner. We ate at a traditional Nepali restaurant and it was wonderful! We laughed and drank and ate and compared differences in cultures. It was so much fun talking to the women about fashion and cooking and getting married...girls are girls wherever we are :) I looked around the room and knew that I was going to miss these people that I have grown so fond of. We spent many, many hours together working hard and it was wonderful to have our last night be one of laughter and fun.

While pondering the impact of us coming here and thinking about things we can do better next time, Blaine shared with us something Hem said to him. He said, "Your team coming here is not only helping the families at ACN, but you are helping our country, Nepal". Never in my wildest dreams could I have imagined to hear something like that. Once again, I get choked up thinking about it.

Autism Care Nepal is on it's way to being a hugely successful autism center. They have a very strong, wonderful group of parents making the center happen. While we only had a short time there, a lot was accomplished. ACN deserves even more comprehensive training and I hope that Knowledge for People can facilitate that for them. It all depends on funding and support. I will work very hard to make it happen!

Lastly, I can't thank the first Knowledge for People project team enough (choking up again). I was a little nervous having only known Dori prior to the trip. Spending two weeks with a group of people who hardly knew each other and are in a totally different culture can get tricky! I knew the first night when we were all together that it would not be tricky and that there would be no problems at all!! We truly have a special bond now and I feel so fortunate to have experienced this with this outstanding group of people. We had many slap-happy nights talking about our days that I will never forget. Dori finding velcro stuck to her underwear (we use velco for PECS), Ann Marie's Lamia-Lamia hair, the drawing that looked more like a boob than a pop bottle (Dori, I found it in my purse and you know it will resurface one day), a skirt that felt like a wedding dress, toilet incidents, taking a picture of the eclipse on the TV while it was happening over our balconies, clown goes on and on. Blaine, thank you for your sense of humor, your love for beer, and for being our photographer, videographer, manager, and bouncer (haha). Ann Marie, I thank you for your sarcasm, sense of humor and knowledge, your positive attitude, and for pushing yourself beyond your limits. Your personality makes me smile! Tanya, thank you for sharing with us your parenting experiences and all of the other wonderful knowledge that you have. Thank you for your calmness, flexibility, and for your friendship. Zahida, thank you for your wealth of knowledge, your insight into the Nepali culture, for translating, and for your total dedication. It has been a pleasure getting to know you! Dori, thank you for making me laugh all day, every day. Thank you for your compassion, for the talks, for being my roommate, for your bargaining skills, and most of all, for your friendship. I miss you already!

One last thing…I know that things in the United States are hard right now with the recession and all. I am not going to minimize the financial stress, which leads to emotional stress, that so many of us are dealing with because regardless of the state of the rest of the world, what we are going through is very real to us. But, we have to be thankful for so many things. We have clean water and clean air, FREE education (families here have to pay a lot of money for their kids to go to school), a great waste management system, resources for our kids who have special needs, superb medical treatments and facilities (one of the parents is an oncologist and he was telling us that they still don’t have much of the breast cancer technology that we have in the states), our electricity (in the winter and spring they had up to 14 hours EVERY DAY with no electricity) and we have to be grateful for all of these things while we are recovering from these tough times. Okay, I'll get off my soapbox now :)

Thank you for reading these blogs and I hope all is well with everyone! For more photos, go to my other blog.


  1. Beautiful post, Nikki. I am so proud to have been a part of this wonderful experience. Thank you for the opportunity!

  2. I received this comment from Dr. Kapendra (father of Krit) on my other blog: "Hi Nikki, and all. Firstly I would like to appologize that I haven't taken time to say thank you to all of you. We just been busy with our work. Your coming to Nepal has brought a new wave of enthusiasm in all parents with children with Autism. We are trying to do our best to establish our center, ACN. I think the best way to express our gratitude is to promise that you will see a better center for children with Autism the next time you come to Nepal. Thank you for your wonderful comments about ACN and Nepal. ACN and Nepal will always be in your and all the teams debt for what you have done in Nepal. We really wish that you all will come to visit us often in the coming years. Love you all."

    Thank you to Dr. Kapendra and all of the parents for allowing us to work with their wonderful children!

  3. A powerful message "There is hope"

    Congratulations to all of you.

    Paulene xxx

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