Some Plans Are Worth Changing

Some plans are worth changing.

Last week I moved back to America after a year of living and working abroad.
The last place I was when I left for this voyage was the Global Autism Project
office in NY, and as the universe would have it, the Brooklyn office was the first
place I stopped on my return to the States. This was not my plan a year ago.
My plan one year ago was probably the most thought-out plan I had ever
developed. And if you know me personally, you know that my attempt at creating
a plan is about as finite as Katy Perry’s hair color. Nevertheless, I had a plan. I
would sell my car, book a series of one-way flights through Global Autism
Project’s travel wizard we call Gayle, and begin a student teaching program in
Australia. Next step: move back to Georgia to teach high school Special Ed, and
travel with SkillCorps during my summer breaks forever and ever. It was a
seemingly solid plan.

But then I began the move, which started with my first SkillCorps trip to India.
Despite ten months of fundraising, t-shirt campaigning and general rooftop
shouting about the beautiful mission of Global Autism Project, I didn’t really grasp
the significance of the movement in which I had joined until I had two feet on the
ground in Chandigarh. I knew the foundation, I understood the goals and I could
speak to a room of inquisitive donors about why sustainability sets Global Autism
Project apart from other NGO’s. But it wasn’t until I was about eleven days into
our work at SOREM that I had a moment of overwhelming understanding. Our
team had hit the low point of the trip, we were back on the high, and were seeing
the ripples form from the pebble which we represented. And this was the moment
my plan began to change. I was no longer a volunteer, I was part of the
movement. I no longer wanted summer trips, I wanted every SkillCorps trip.
Over the next ten months, I traveled to Indonesia with SkillCorps, completed my
teaching certification program, and graciously accepted an invitation to join the
first SkillCorps Leadership Academy. And just like that, my plan inevitably
changed.

The first question we were asked at Leadership Academy was, “What brought the
magic?” I have seven possible answers scribbled in my notebook, but reading
them now, I know that my magic comes from simply being on site. We discussed
the draining aspect of our work in these countries, and how to refuel our passion
in the midst of chaos we may discover miles outside of our comfort zones. My
passion station is in the Early Intervention room at SOREM, and sitting crossed
leg on the colorful rugs in the center in Jakarta. The magic happens when I meet
therapists who have traveled two days on a train to learn about the Functions of
Behavior. Suddenly, my plan went from offering my skills once each year, to an
overwhelming need to be an active role in this movement.

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My ever-evolving plan is now based around the schedule of SkillCorps trips, and
an anxious anticipation to return to my passion station. My new plan is to trade
my vacation hours for SkillCorps work and fill my evenings practicing broken
Bahasa. I’m not abandoning my desire to teach or work in Special Education, I
think I simply found my passion in various classrooms on multiple continents.
And I realized in New York, as I compared my role in the same office just one
year earlier to the leader I was training to become, that my plans weren’t ending,
they were transforming. I knew I would travel with Global Autism Project again,
but I am elated that my role will now be to lead our amazing volunteers, and
place a few stones in the foundation of this global change for children with
Autism.

Cassie Harden is a SkillCorps member and recently began her training as a SkillCorps leader. She will be leading her first SkillCorps trip this summer.

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Community Training with Hi5

Krystina Gilhuly is a Clinical Coordinator based in Connecticut and is currently part of the SkillCorps team in Indonesia.

We finished during this week with the 6 days of community training with the staff at Hi5. This was an amazing training where the staff at Hi5 were able to co-lead the trainings. The staff took the initiative to set up the training. We then helped present the topics and the staff took over the afternoon with having role plays, video feedback/review times, assigning homework, and facilitating discussions. I especially loved how the staff were becoming the experts and able to practice training others. The training started with basic concepts which then built upon each other throughout the 6 days. Every step of the training was planned out to allow the participants the opportunity to understand theory and then practice the skills.

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When the training ended, I wanted to keep going as we were creating close relationships with the participants. The participants also didn’t want to leave. Even after we were done and took pictures, the participants still stayed around talking. I think that is a sign of a good training!

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Getting to Know Jakarta, our Home Base in Indonesia

Lisa Horowitz is a member of the SkillCorps team currently in Indonesia working with Hi5.

Jakarta is a city of dramatic contrasts.  This was perfectly captured for me in a billboard above the major city highway advertising a “5K Run for Leprosy.”  Leprosy is a curable disease that has been virtually eliminated as a global concern, but remains a problem in pockets of the world, Indonesia among them.  Lack of information and stigma are barriers to accessing treatment and consequently eradication.   On the other hand, “runs” for causes are a familiar western form of “doing good” in affluent communities of health conscious, civic minded individuals.

Our SkillCorps group was first introduced to Jakarta at the ultra-modern Soekarno-Hatta international airport.  We were driven by hotel van (yes, bright pink) at night to our hotel in East Jakarta and had a chance to observe a vibrant city of high rises and blinding lights.  Our hotel is attached to a shopping  “mall,” a collection of vendors of all types of necessities from clothing to electronics to massages.   At the ground level is a panoply of fast food restaurants, including many American chains.  Our group has enjoyed exploring the variations on well-known offerings, including the Dunkin Donuts local specialties of “Durian” and  “Black Lychee Orange.”  (Note:  Durian is a fruit found in Southeast Asia known for its unique and very pungent odor and distinctive and unique taste – imagine the aroma of athletic socks and the texture of mealy tofu— not a favorite of our group, although other local fruits including the rambutan and mangosteen got rave reviews.)

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Navigating Jakarta’s streets, which are crowded with motorcycles as well as cars, is a challenge.  To its credit, Jakarta has a mandatory helmet law, but it gives pause to see families of four crowded on a motorcycle with infants wedged between adults and young children crouched in front.  Drivers are polite – surprisingly little honking_– and traffic is remarkably orderly.  Nonetheless it moves very slowly at times and a taxi from the old city to our hotel one evening, a distance of 9 miles, took almost two hours.  Our taxi driver seemed to take this in stride.

Although downtown Jakarta rivals many cities in its displays of deluxe shopping malls and modern office buildings, poverty and decay are also hard to avoid.  The old city of Jakarta, which houses much of the city’s rich history, is surprising for the level of deterioration and neglect.  Many of the city’s poor live in the narrow, crowded streets of the old town and the waterfront.

In such a city, it is not surprising that autism treatment is something of a muddle.   Although awareness of the disorder is rising, the options for evidence-based treatment are limited.  Parents are presented with an array of confusing and unsupported therapies and children are often treated with interventions such as diets and acupuncture.  In desperation they may engage in more drastic measures; a news report described the case of one rural family forced to keep their child on a leash due to his aggression because services were unavailable.

We are thrilled to be working with Shinta Barasa and her colleagues at the newly formed Hi-5 Center to educate and train staff as well as parents them on best practices.   Hi-5 is eager to learn and become a model of excellence in providing services for Indonesians, a worthy and essential mission.

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Another Day, Another Miracle

Sara Costello is the Director of International Partnerships and a SkillCorps Trip Leader for the Global Autism Project. She is currently traveling with SkillCorps Indonesia.

“This isn’t just “another day, another dollar.” It’s more like “another day, another miracle.” – Victoria Moran

One of the responsibilities of a SkillCorps team member is to record their experiences. While we love to see blog posts and social media exploding with the power of SkillCorps, the most important aspect of this record-keeping is to remember. This quote from Anais Nin may summarize it best: “We write to taste life twice, in the moment and in retrospection.”

What we find through the SkillCorps experience is the importance of purposeful living. Purposeful living can mean different things to different people – it can mean “cleaning a teapot with the same kind of attention I would have were I giving the baby Buddha or Jesus a bath” (Thich Naht Hahn) or deciding each moment to live on the brink of discomfort to stretch yourself and grow. In either case, reflection, introspection, and meditation are key.

“Many people are alive but don’t touch the miracle of being alive.” – Thich Naht Hahn

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I began a new tradition on this SkillCorps trip of emailing my morning meditations to the team before we met for breakfast. It has helped me to read, write, and then rewrite the positive affirmations that I would carry throughout the day.  And at the end of the day, I record my experiences and am able to see how that foundation for the day has resulted in purposeful living – in caring for each moment, nurturing progress with the staff of Hi5 Centre and fostering new experiences for a team of volunteers who have traveled halfway around the world in order to give of themselves.

One of our team members, Amy, watched this TedTalk on the flight from New York to Hong Kong and shared it with the team. It includes practices for happiness – daily exercise, gratitude journaling, recording positive experiences, meditation, and random acts of kindness. Our team has worked hard to live by these tenants for the last 10 days and I could not be more proud… not only to be part of a team acting as a catalyst for change in Jakarta, but to be a part of a team that cherishes positive practices, introspection, and journaling.

We’ve all seen ourselves come alive with time spent purposefully, outside of our comfort zone, and suspending disbelief. It’s a miracle we’re alive – and a miracle we get to live this life.

(Seriously, a miracle: We flew halfway around the world, raced pigeons, climbed an active volcano, held orangutans, saw Borobudur at sunrise, and have had the honor of working alongside the staff of Hi5 Centre – all in 10 days.)

I cannot encourage you enough to take time everyday to start the day right. Wake up early and stretch. Have your coffee. Sit with yourself. And care for yourself and others, in thought and in action.

Wishing you the best, and sending you our love from Indonesia.

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Halo from Jakarta, Indonesia!

Amy McCamant is a BCBA currently on the SkillCorps Indonesia trip working with Hi5.

It has been fantastic and eye-opening trip thus far. Being someone who has never traveled outside of the U.S. before, I am soaking in and embracing all of the differences and learning so much about the culture. So far, one of the most meaningful and wonderful experiences for me has been meeting the staff of Hi-5 and getting to know them and their story. Learning about their history and their passion for children with autism and their drive to gain knowledge of ABA to provide effective services to their clients has been nothing short of amazing. I’ve learned that in Indonesia, a majority of the people turn to biomedical treatments for autism as opposed to implementing evidence-based practices, and effective ABA services here are rare. It is incredible to me that the staff members of Hi-5 are going against their culture’s norm and striving to learn anything and everything about ABA in order to make lasting changes in their client’s lives. Seriously, they rock.

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The staff at Hi-5, and the work done by the Global Autism Project, reminds me of one of my favorite quotes:

“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.”  – Margaret Mead

I whole-heartedly believe that this group of dedicated and passionate individuals here in Indonesia will make a significant difference in the lives of children with autism. With Shinta as their clinical support and their energetic/experienced staff members, they are going to do some amazing things!

We weren’t quite sure what to expect when it came to the trainings we were preparing – we were teaching to a pretty diverse group. Some participants were therapists, some were teachers, and to my very pleasant surprise, some were parents! After the first day of training we all agreed that we couldn’t have asked for a better group of people. Each person was there because they WANTED to be there and learn more about ABA and how to teach their clients/children, and they weren’t afraid to get crazy when it came to role playing scenarios.

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One thing I love about this trip is that we work hard, and play hard! We spend our weekdays preparing trainings, presenting information, and ensuring everyone understands the topics (even with the very obvious language barrier – thank goodness for our translator Shinta!), and we spend our weeknights exploring markets, giant gem stores, and delicious restaurants. And then there’s the weekend excursion, which is literally the most amazing experience I’ve ever had in my life (and a whole other blogpost for a different time J)!

This trip has already taught me so much about different cultures, social norms, religions, and ways of living that are much different from my own – and I am LOVING every minute of it! I am challenging myself both personally and professionally in ways I didn’t know were possible…and it’s a truly liberating experience.

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Getting Outside of My Comfort Zone

Krystina Gilhuly is a behavior analyst and currently traveling with SkillCorps to Indonesia.

After completing the first work week, three phrases come to mind that summarize the experience. Language barriers, comfort zone, having fun. 

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Presenting to an audience and engaging in hands-on training has its own challenges. Add the language barrier and things get more complicated. One has to pause often and hope that the translation was accurate. Luckily, our translator is the clinical director of Hi-5 Centre and has been receiving training for the past few years from the Global Autism Project. The other great thing is that we were able to do role plays to ensure understanding of the topic. You could see the progression of the participants skills build over the days.

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The language barrier affected many aspects of travel despite many people speaking broken English. I had no idea what food was, how to communicate with taxi drivers, and how to go shopping. We would spend time reading the menus and trying to memorize Bahasa words. We also got some double meals when we changed our mind and they didn’t understand. I think we all had a running list of commonly used Bahasa words. We struggled with effectively communicating with the driver on little details but we always get where we needed. Other areas like shopping made asking details difficult and calculators (to type in the price) necessary. In all, despite a language barrier we are able to still communicate.

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The second and third phrases go together (Living out of your comfort zone and having fun). I love to think of the saying that magic happens outside of your comfort zone. It truly did this trip. I would never have experienced the magic of Indonesia and SkillCorps without having left my own comfort zone. One of the many things that I did was fly across the country with strangers to meet strangers. I met some of the most amazing people on the team and in the country.

I don’t like speaking in front of groups. But when I did, I was able to teach with my teammates a group of people and see the excitement that they had for learning how to better help children with special needs.  We would laugh and support each other’s as we did role plays. The best thing was when we taught each other a skill and the “child” (the other adult) got the correct answer or an independent response. The whole room would light up with smiles and loud praise.

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These are just some of the many things that have brought me out of my comfort zone. Without jumping out of that zone, I never would have experienced Indonesia like I did. 

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“Those who don’t believe in magic will never find it”

Amy Tanner is currently on a SkillCorps Trip in Indonesia. She is a Behavior Consultant and Under 6 Program Manager at the Monarch House.

As we wrap up our first week in Jakarta and somehow the midpoint of our trip has come and gone, there are two questions: How have we possibly fit so much into just 1 week? And how has one week passed so quickly?

Just over 1 week ago, 3 BCBA’s, one Clinical Psychologist and our awesome Team Leader arrived for orientation at the Global Autism Project office in Brooklyn, with very little idea of what would unfold before us.   It was during the first day of orientation when we created a shared vision for our trip, which read something like this:

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We came from all corners of the continent with only our passion for ABA, our love for working with children and our adventurous spirit tying us together.  (Passion for ABA may be an understatement, as the majority of our dinner conversations and taxi rides have been dominated, by choice, by all things ABA).

Two packed days flew by in the big apple and we were left with the anticipation and excitement of a young child on Christmas Eve as we prepared for our departure to Indonesia.  Twenty-four short hours of travel later and we had finally arrived in Jakarta, all with a similar sentiment about our travel experience which was “That didn’t seem so long”.  After traveling literally half way around the world (in Coach) this was not a usual sentiment, but it definitely speaks to the fact that we were/are just “pumped” to be here.   Although it was kind of hard not to have arrived “pumped” when we were picked up in a hot pink mini-van with Selena Gomaz playing. Jakarta was off to a good start.

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Breakfast the next morning helped me realize why so many of the children I work with in Vancouver (of Asian descent) struggle with sorting breakfast and dinner foods: their breakfast is literally made up of our dinner foods. (I guess it shouldn’t be an error when a child puts fried chicken and rice in the breakfast pile, because that’s what’s for breakfast). Additionally, a chicken porridge station is also a staple at the breakfast buffet, which I have grown to love. Just kidding, I loved it from the beginning.

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(1st day breakfast: Amazing Indonesian coffee with steamed coconut milk, fresh papaya, some pretty awesome curry potato -things, other chicken and fried things, and a bowl of chicken porridge).

After an awesome day of sightseeing and more delicious food, we were ready to get to work.

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More delicious food.

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(And work: Skillcorps Team just 24 hours after arriving in Jakarta)

Two days later I led my first workshop ever with a translator (which was beyond cool) and an amazing translator and co-leader she was. Love you Shinta!

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And seeing the staff and participants engaged, participating, and learning was just as rewarding as watching our little ones learn something new.

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Tomorrow our SkillCorps team is off to Yogyakarta for a weekend excursion to see some temples, make some pottery, bike through rice fields and catch some fish for dinner. If we can get so excited by a pink minivan and chicken porridge, I’m not sure how we we’ll handle Borobudur. Wish us luck!

“Be brave. Take risks. Nothing can substitute experience.” ~ Paulo Coelho.

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A Mother and her Passion

Sangeeta has an energy that is contagious. She is our partner in India – the person who runs the training for staff at SOREM. But while Sangeeta is able to waltz around the center with the poise and professionalism of a tenured staff, she is simply a volunteer following her heart. I know my sentiments are echoed by all SkillCorps team members when I say that I am astounded by her commitment to the cause for autism in India.

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Sangeeta’s journey with autism began after her own son’s diagnosis, who attends SOREM. She has been a crusader in her community. Upon arriving in India, she enthusiastically announced the government will host us for a workshop! Sangeeta, Liz, and myself presented to teachers from Sectors 20-50 about the signs and symptoms of autism, as well as how to include the children into a typical classroom. For many teachers, it was the first time they had heard of autism. For others, it was the first time they considered the possibility of teaching a child with autism. We declared as a team that even if one walks away with the hope of inclusion, it was an afternoon well spent.

I have watched Liz and Sangeeta develop a special bond – both mothers of sons with autism on the brim of adulthood; Sangeeta soaking up Liz’s own hopes for her son and possibilities for his future. Watching a credentialed expert and an enthusiastic volunteer trade knowledge, accomplishments, and cultural understandings of autism has fostered a devotion and eagerness for the vision of the Global Autism Project to come to fruition.

We’ve spent ample time being cared for by Sangeeta and her family. Home cooked meals, trips for Mendhi, rides to SOREM, and an empathetic heart have made this trip especially meaningful. We’ve listened to fears of the future overshadowed by wreckless optimism. India will accept individuals with autism. The children of SOREM will have a place inside their community.

Photo Credit: Caroline White

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Why this Giving Tuesday Matters So Much

Every day I ask myself the same question: Am I closer to getting services for Vivian?

I began my journey with autism in 2009 as a volunteer in Cusco, Peru. I had an open mind and open hands, ready to do whatever. I told the school director to put me wherever needed me most. He chuckled and led me to the multiple and severe disabilities classroom.

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Not sure what to anticipate, I opened the door and found a classroom full of lively kiddos. My students for the next 3 months, they taught me about communication: They showed me that biting is not aggression, but an eagerness to tell a need. The seeming dysfunction of the classroom was fostered by a brilliant teacher, often chastised for her refusal to use corporal punishment. Many instructors, parents, and community members believed that these children were possessed, a token of Black Magic, or simply insane. They relied on instinct alone to keep the behaviors at bay.

Who is Vivian? Vivian captured my heart. Described as anxious, unwilling, combative, and aggressive – she was a 9-year old child in need. Vivian taught me about functional behavior assessments – while dressing her one day, I noticed her shoes were three sizes too small. Sure enough, when her shoes were removed, the ‘aggression’ lessened. She wasn’t quite as ‘anxious’, not so ‘combative’.  We became so intertwined during the school day, staff began calling her my “hijita” (daughter). I visited Vivian’s home many times – washed clothing with her mother, listened to her fears, and watched Vivian cling to her.

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Five years later, I am working the job of my dreams. As the Director of International Partnerships for the Global Autism Project, I have the unique opportunity to meet children like those who enchanted me during my introduction to autism in Cusco. What I found through my work though, was both enlightening and disheartening. I deeply desired to change the world for the kids in Cusco, Peru who first stole my heart. However, not only was this time and resource-consuming – it wasn’t the most culturally effective way to make a difference. While I developed intense and beautiful friendships with the instructors at my first placement, instruction coming from me would not be most effective. What we needed was a local champion with skills, language, and background to reach out to the school in Cusco. As I asked myself – am I closer to getting services for Vivian – I found that often the answer was “no.” We were making progress for many children around the world – I saw firsthand the evidence-based services implemented through our training and gains made by both students and staff. How, though, could I reach this rural community?

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I wrote up plans for dissemination, plans for outreach, and plans for expansion. I studied the culture more than ever before, contacted local individuals, and kept track of my first students to the best of my ability. Now – for the first time, we have a plan in place. We have more than 10 years under our belt training local professionals, and we believe that there is hope for the Vivians and Arturos of Cusco and their parents. Global Giving has approved our program for rural outreach, the project that has commanded my senses for years. We’re finally closer to getting those children in Cusco the services they so need. We are finally closer to instilling hope in a community that has forfeited the notion.

Our vision at the Global Autism Project is of a world where people with autism worldwide have access to services that enable them to reach their potential. My personal vision is a world where my Vivian has access to services that will lighten her burden and struggles – and access to services so that the hopeless notions her mom first spoke to me five years ago can be lifted. Am I getting closer? YES. Finally, yes.

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Get involved. Share, join the movement. Tell your friends. We’re going to change the world, and you get to be a part of it. They can too.

 

Sara Costello is the Director of International Partnerships at the Global Autism Project.

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Wrapping up in Indonesia

Greetings from Indonesia! We are wrapping up our trip here at YCHI in Jakarta and it has been nothing short of amazing. Although there is a huge language barrier we have managed to laugh a lot while share teaching techniques and ABA strategies with the staff here. Everyone including the children, parents and staff greeted us with open arms and were all anxious to learn and share new ideas.

For the first week here, I was unable to hear out of one ear after 24 hours of flying. Although this was uncomfortable, it really forced me to actively listen to the staff and children here and reminded me how lucky I am to have the ability to hear. Although we do not understand the native language of Indonesia we are all able to see the smiles on everyone’s faces during therapy sessions as well as share sessions. The staff has also been wonderful with trying to teach us Bahasa.

Our days are structured such that we are able to observe one on one therapy in the morning with the staff and parents and then meet with the entire staff in the afternoons. I love that we refer to this as “sharing time” as that it what is it. We are sharing our feedback and really want to create dialog among the staff. Our second week here the share sessions were extremely productive and the staff is all learning new terminology regarding data collection and functions of behavior.

This has been one of the most unique challenges of my ten year career. I am used to being challenged by a non compliant child or frustrated parents in my day to day job in America. The new challenge of a language barrier and lack of resources reminded me why I love to teach. Global Autism Project and YCHI renewed my passion and determination to teach those who need it most. YCHI has given me a new appreciation for patience, simplicity and love. It has continue to make me feel empathy for those who cannot speak or understand what people are trying to tell them. We will leave here knowing that the YCHI staff still continue to love and teach the children who attend their centers. I am so lucky to have traveled with Global Autism Project and look forward to more trips in the future.

Teresa Day is a current SkillCorps Member and just returned from a SkillCorps trip to Indonesia.

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