International Conference on Equitable Education

Changangkha Middle Secondary School

Ama Prashanti’s Story in Humans of Thimphu

My son was born 6 weeks premature via C-section. He spent 3 weeks in an incubator before I could finally bring him home. At home, I’d note all the changes in his body such as his feeding habits, toilet schedule, and sleeping pattern. At 6 months, I noticed he wasn’t visually tracking movements.

After consultation with doctors, we learned that part of his brain responsible for processing images was not functional. We even took him to Vellore where he underwent various examinations. They diagnosed him with spastic quadriplegic cerebral palsy. I had a hard time accepting that.

I took 2 years off from work and also hired a helper. But she quit after 2 months, and I realized that my son’s well being was solely my responsibility. Others would help but I had to be the solid ground. So between career and family, I chose family and became a full-time caregiver for my children.

The Bhutan Foundation offered us the opportunity to attend a parent congress of visually impaired children in the Philippines. My son was too young so I passed on the trip, but my friend brought back ideas to advocate on our children’s behalf. We shared with other parents and thus Bhutan’s first parent support-group was born. With support from Bhutan Foundation and Helvetas, we piloted a project to improve inclusiveness of classrooms. Students with disabilities were taught alongside others with modification. Teachers, too, were given training. We saw many positive changes. We went on to register as a Public Benefit Organization as “Phensem Parents’ Support Group, Bhutan.” Our goal is to empower the parents who aren’t as hopeful. We also focus on mental health, especially for caregivers. We do monthly gatherings to combat burnouts.

The subject of disability has been thoroughly studied by experts. But caregivers experience everything firsthand. Therefore we aim to bring to notice the real issues of disability and advocate for the gaps in the system. If we want a person with a disability to thrive, the family must be empowered and the environment must be fixed.

#HumansofThimphu #HumanStories #Thimphu

Ama Tandin’s Story

When I was told that the child I was carrying inside me would be born with Down Syndrome, I was in shock, followed by feelings of extreme sadness and guilt.

6 years later we are proud parents; nobody says, “This is Tandin’s daughter,” they say, “These are Neema’s parents.” Neema’s early childhood was not easy, she had to undergo an open heart surgery when she was just 6 months and we would like to thank Mr. Lee Kwangsik from South Korea and his entire team for sponsoring our daughters surgery and recovery at South Korea. She still has many challenges like hypertension, difficulties with her fine and oral motor skills, communication, etc. to name a few. One of the biggest challenges we parents faced in the beginning was feeling hopeless, alone and overwhelmed and also trying to manage our time between earning a living and making sure Neema’s care was not compromised.

My happiest memory is of the time when my daughter was accepted at Hejo ECCD Centre at the age of 3 along with other children of her age. Thanks to Madam Yangree of Hejo ECCD Centre, my daughter got help and support in achieving many of her developmental milestones.

Becoming a member of Phensem brought me in touch with many other mothers who felt emotions just like me and encouraged me to think positively so I do just that now. Where there are challenges there is also hope and joy. Instead of looking at what Neema cannot do, we focus on what she can and that gives us a lot of peace and satisfaction. She can follow instructions, enjoys running around and socializing, she is emotionally attached to the family and she enjoys puzzle games a lot so we have a lot of enjoyable moments as a family.

I know that Neema is different from other children and her growth and development will happen slowly and while we, her family accept and love her for who she is, I hope to see society also evolve so that every child has a happy childhood, they aren’t treated differently and they are nurtured to grown up into confident and independent human beings.

I am Tandin Wangmo, mother of two daughters and a member of Phensem. My elder daughter Neema Jangsem Ongmo is 7 years old and has Down syndrome, and my younger daughter Pema Dolma Chamling is 3 years old. I am a house wife.

Ama Sonam’s Story

My Hero, My Strength

The story goes back to the year 2006 in spring when everything around looked beautiful and green but I was totally in the abyss of darkness.

During one of my visits to the JDWRH in Thimphu, the gynaecologist diagnosed my child with Down Syndrome and all I could do was stare at her in shock and walk out, dazed and in disbelief. I could not even speak a single word to my husband who was waiting outside. Both my husband I didn’t know much about Down Syndrome and I was worried about what my family would say but I was relieved by the immense support and care from all the significant people around. A huge load was lifted off my chest.

Now, having Pema in our family for 16 years has been amazing and I am grateful for having him in my life. Down syndrome has been a source of inspiration, motivation and strength to my family and I have begun to feel blessed in many ways. Pema is my role model .He keeps me grounded and helps me connect with everything happening in my life with insight, fun, meaning, and confidence. He exudes such loving and joyful energy; and when I am around him, I become more confident that everything is going to be fine.

Today and every day, with Pema in our lives, I have made a promise to myself that I’ll never ever feel sorry for myself and my son and for our lives being “different” and I’ll love him just the way he is. Pema knows exactly who he is and what he wants and with his incredible strength and quiet determination has been the best teacher I have ever had.

Therefore, you may or may not know someone with Down Syndrome but please do NOT build a wall of sorrow or fear around the diagnosis. Remember that Down syndrome is neither a curse nor a disease, it is a condition just like any other condition in life and I wish upon you the strength and the power to understand and accept persons with Down Syndrome as one of your own.

~ Sonam Choden (Pema’s Mother)

Parachute Play

Founders & First Board of Trustees

Second Workshop on Inclusive Learning and Play

Phensem PSGB held its second series of Workshop on Inclusive Learning and Play supported by the Rotary Club Thimphu – Workshop 2: Inclusive Play and Adapted Physical Education. 29 participants comprising of parents, teachers and SEN Aides from partner schools attended the workshop. The workshop was very interactive and engaging for the participants where they learnt about how plays can be adapted to engage all children and how learning can take place through play, especially for children with disabilities at home and in schools.

International Day of Persons with Disabilities

Phensem observed the International Day of Persons with Disabilities (IDPD) today with a slightly different approach to fulfill the purpose and align with the theme “Transformative solutions and Innovation”. We chose to provide our guests with the opportunity to form teams that include our children with diverse disabilities and their caregivers to carry out activities where every member of the team was included in terms of equitable participation.

The guests got to interact with the children and their families and see and experience the world of possibilities through inclusive play and activities.

First Workshop on Inclusive Learning and Play

Phensem PSGB, with the support of the Rotary Club, Thimphu, held the first series of its one-day Workshop on Inclusive Learning and Play—Workshop 1: Behaviour Management and Positive Reinforcement. A total of 34 participants (parents, teachers and SEN Aides) attended from partner schools.

This workshop is part of the series of four workshops which focus on four important domains that have been identified in the field of inclusive education and disabilities. It is targeted at teachers, teacher assistants (SEN Aides) and parents, aiming to provide them with the knowledge and skills to help support children with disabilities in productive learning in schools, homes and institutions. It also aims to help contribute to learning opportunities in the community for children with disabilities, therefore providing them with meaningful and productive lives.