“To quote Dr. Seuss ‘Sam I am’” Samantha begins, when asked about herself.

“To my friends and family I am Sam and to the families I work with, I am Aunty Sam!  The only time I get called my full name (Samantha!) is when I’m in trouble!”.

Samantha had a very fulfilling childhood - growing up with two sisters (one of them 10 years younger than Samantha), her time was spent entertaining her siblings and going to the beach. These two factors lead to dichotomous career choices in the mind of the young Samantha.

“I really wanted to be a marine biologist at one point. It was either fish or children.  As I grew older, children trumped fish and I decided to become a speech and language therapist”. 

A few years later, she set up the Jellybean Foundation.

“The Jellybean Foundation is my heart project.  Heart here meaning one that I do with all my heart!  It’s a charity that is geared towards supporting programmes run at schools, clinics, centres or even homes, for children with additional needs”

Samantha explained. The Foundation wasn’t simply a spur of the moment decision, but an idea that emerged from a very real need faced by many in the country.

“As a student at the Ragama Medical faculty, during one of the clinics we ran, a family called me and said they won’t be able to bring their son to the session because they couldn’t afford the train fair.  I never got over the fact that the only thing that stood between me the healthcare provider who was providing a service at no cost and the family that needed support for their son with Autism was about a 100 rupees!  The hospital is easily accessible by train so even that was covered!  It made me realize that even though we have a good system in place for healthcare in Sri Lanka, we may not always reach the people who really need it because of additional circumstances”.  

The experience prompted and inspired Samantha to taken action. 

“Thinking of and implementing a simple solution like having a transport fund for families once they come to the clinic was what prompted me to continue running projects which eventually ended up as being the Jellybean Foundation.  Many companies have CSR initiatives and they often focus on centers or home in and around Colombo.  We’ve directed a few companies to work with us on projects in places like Mawanella and Trincomalee”.  

“I don’t believe in handing over donations and then leaving.  Therefore we have training programmes for staff or families and we always spend time working (playing actually) with the children.  We are currently focusing on projects around the North and East with the Holistic Special Education Foundation.  Our work mainly includes training programmes for teachers and midwives, taking in appropriate resources for the families, classrooms and clinics, working with the families at their homes or the MOH offices.  We’ve focused mainly on Trincomalee but we’ve visited places in Batticaloa and Kilinochchi as well”.

According to Samantha, people will be surprised to know that the Foundation does not have any “staff” per se. The ‘we’ she often refers to in conversation are her “friends, family and other wonderful professionals or well-wishers who join our projects! 

My family and friends all have spent a lot of time with children with additional needs and I do feel that this helps to build a more compassionate society.  The Jellybean Foundation is not about one party giving someone less fortunate.  It’s about sharing.  The main work we do on our projects is ‘Sharing Smiles’”.

“Over the last 12 years working in this field I’ve seen the services provided to children grow and improve.  Many more schools are providing services for children with special educational needs.  Children are getting access to their basic rights!  The human right that appeals to me the most is the right to communication.  The right to communicate includes the right to ‘freedom of opinion and expression’ and rights and freedoms ‘without distinction of … language’. (Universal Declaration of Human Rights, Article 19, 1948)  Therefore I would really like to see more use of assistive devices for communication including communication board and other low tech AAC’s to high tech apps being used in schools and other facilities to give all children more opportunities to express themselves.  As Sri Lankans we all do love expressing our opinions and feelings freely don’t we?”  

“I was privileged to attend the IVLP programme last year on Human-centered design and Accessible Physical Environments through which I came up with a lot more projects to work on in Sri Lanka.  Access to physical environments, services and information is crucial for persons with additional needs to have better quality of live for themselves and their families.  Sometimes I do wish I could clone myself and work twice as much to get all the projects I have in mind up and running!”.

Without a doubt, her work has its fair share of challenges, but Samantha derives pleasure and happiness from the work she does for the Foundation.

“The most satisfying part of the work I do through the Foundation is seeing a child smile!  There is no greater accomplishment for me than to get those little toothy grins going.  Sometimes families walk in to see us with a child who’s crying or unsettled.  After a little bit of work when the child starts smiling you see the entire family smiling.  It’s truly worth all the work you put in”.

“I remember being taught at my school (Methodist College) that children are a resource that we need to invest in!  Children with additional needs are worth investing in.  Many families can’t afford extra care for their children and then they also lose out on the income the parent who is caring for the child could bring to their household.  This hugely impacts the economy of the family.  So supporting the child with additional needs means supporting and entire family to be self-sufficient”.  

“I read this saying many years ago by Mahatma Gandhi where he said ‘Be the Change you want to see in the World’.  I always tell myself that I can’t complain unless I’m doing all that I can! I do so hope that in the years to come we can work to supporting more children and their families to live truly fulfilling and enriching lives.  We will never stop sharing smiles!”

Pics Kushan Pathiraja