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.

Friday, May 29, 2009

Nepal Trip - July 2009

I'm very excited that our first trip (Nepal, July 2009) is coming together very well! We are working with AutismCare Nepal and Hem & Kalpana are the founders. They have a child with autism and there were zero resources for them in Nepal. They were so frustrated that in April 2008 they started their own center. They have since found over a dozen families with children who have an autism spectrum disorder and are in need of support. Overall, in the Nepali community, autism is either not known of at all or misunderstood. There are no school programs in Kathmandu for kids with autism and there is a lack of therapists and specialists. So far we have 12 families and a few teachers signed up to spend time with Knowledge for People. Our goal is to give these families and the teachers in the area some training and strategies that they can continue to use and teach to others after we are gone. We will be presenting on different topics related to autism and working with families and their children individually. We also plan to conduct a radio broadcast about autism with hopes to create more acceptance of the children into the community.

I am SO excited about our Nepal team!! Here are the volunteers who are going on the trip:

Tanya Savko: Tanya is the author of Teen Autism and will be publishing a book about parenting a child with autism later this year. One of her sons has autism and she will be a great parent representative in Nepal. Tanya has also done a significant amount of research in the area of sensory integration.

Dori Martinuzzi: Dori has over 20 years of experience as a Speech and Language Pathologist working with children who have disabilities, including autism, ranging from preschool to high school aged. She has extensive experience in different communication strategies, including PECS. p.s. I worked with Dori for 4 years and I can't wait to work with her in Nepal!!!

Ann Marie Bokatzian: Ann Marie has over 20 years of experience teaching children who have autism, ranging from preschool to high school aged. She uses the TEACCH model in her classroom and has used several teaching models including ABA and DIR.

Zahida Banu-Jamison: Zahida grew up in Nepal and has been in the US since 1996. For the past 6 years she has been working as a Behavior Health Specialist and she is so excited to give back to the community that raised her!

Me (Nikki Scarbrough): I have 5 years of experience as a School Social Worker working with children who have disabilities, including autism. My main focus with the children is teaching social skills and self-regulation techniques.

Blaine Forintos: Blaine will be documenting our project by taking photographs and videotaping.

Check back for more updates about our Nepal project!

Our First "Table"

Today, Knowledge for People had a table at the Best of the Northwest Autism Conference in Shorline, WA. This is the first time we've attended a conference and it was such a great opportunity! I was only to stay for part of the day because I had to go to work, but Kathy graciously took over. We were able to talk with a ton of great people and we got some wonderful feedback. It was so much fun to be able to talk with people about the goals of Knowledge for People!

Sunday, April 19, 2009

Life? Donates to Knowledge for People!!

Dan and I are very fortunate to have Teddy Van Orman as a friend. Teddy is as hard working and optimistic as a person can get. Not only does he continue to spread his positive energy every day as a person and through his work at Life?, but Teddy has decided that 10% of the purchase price to anything bought in the Life? store will be donated to Knowledge for People! We can't thank Teddy enough. After checking out Life?, be sure to also visit Teddy's inspirational photography website, TBVOphoto.

Sunday, April 5, 2009

New Website & Chicago Fundraiser!

Thanks to the people at Pepper our website is complete and it looks amazing! Check it out here Knowledge for People website.

Some of the ladies at Pepper organized a fundraiser in Chicago in honor of World Autism Awareness Day on April 2nd. The fundraiser took place on April 3rd and it was very successful! Thank you SO much to Emily Brooks, Elizabeth Griffiths, Leah Pogliano, Janna Retzler, Andrea Breunlin, and Tiffany Horn for putting a ton of time and effort into the event.

Also, thanks to PenPal Notes for sponsoring the event and matching 100% of the ticket proceeds!

Wednesday, March 18, 2009

The Beginning of Knowledge for People...

Welcome to the Knowledge for People blog!  I thought I'd start by sharing some background about how Knowledge for People came to be.  My name is Nikki Scarbrough and for the last 5 years of my life I was a school social worker in Michigan.  I worked with kids who have disabilities, including those who have autism.  I grew to love and adore the kids and I also saw the frustrating times and heartache that the kids and their families go through due to the disorder. 

In addition to being passionate about working with children and their families, I am also passionate about traveling to developing countries and helping in any way that I can (being a school social worker I was fortunate enough to have the summers off to travel).  The more I traveled and spent time in various developing countries, their communities, and orphanages, the more I realized how unfair it is that people don't have the same access to the resources we have here in the United States, particularly health care and services for children with disabilities.  (Not to say that services here are always affordable and readily available, but we have progressed tremendously  when it comes to providing services compared to many other countries.)   I felt like I had to do something.  I mean, imagine having a child who has autism and not knowing what autism even is or what to do about it??  This is the case with many families around the world.  It broke my heart knowing that many kids with autism don't go to school, are widely misunderstood, and are often ostracized in their own community.  In September 2008, I relocated from Michigan to Seattle and decided it was the perfect time to act on what I was thinking.  So, I combined my passion for working with kids who have autism and my wanting to help communities in developing countries and I came up with Knowledge for People.  I wasn't able to find a job as a school social worker here in Seattle, so I took a job as a special education instructional assistant so that I would continue to have the summers off to complete KfP projects.  

I began researching what it takes to start a nonprofit and I became very overwhelmed!  Finding funding, building a website, recruiting people who feel as strongly about the need for autism education around the world as I do, paperwork, paperwork, paperwork, blood, sweat, and tears with no pay...phew!  I know I'm being dramatic, but that's how it feels some days :)...although I know it's all worth it to help families in need.  So, amidst my being overwhelmed about getting this going, I received the most amazing email (it was on October 24, 2008, to be exact :).  My friend Emily Brooks sent me a message telling me she works at a marketing company in Chicago called Pepper and they wanted to do a pro-bono project for a nonprofit.  She asked me for some ideas of organizations that might need the help.  I couldn't believe it!  I told her that if they wanted to work with a start-up, here is my idea, and if they wanted to work with a nonprofit who is already established, here are some great organizations.  Well, she put Knowledge for People on their list, the people at Pepper took a vote, and they voted for Knowledge for People! I was jumping up and down and screaming when she told me!  Let's just say that building a website is not one of my strengths.  The people at Pepper have put in so much time and energy to create our website and I am forever grateful to them.  I really hope they understand how much I appreciate it from the bottom of my heart.  I highly recommend  Pepper for all of your marketing needs :)  In addition, to building the website and creating our logo, they are organizing a KfP fundraiser in Chicago on April 3rd to honor World Autism Awareness Day!  More details are on our website under the What's New? section. You can also click here Chicago Fundraiser

As for Knowledge for People progress, we are currently in the process of coordinating our first project, which I'm proud to say will take place in Kathmandu, Nepal in July 2009!  More details to come.  Please check back frequently for new posts!