“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 the 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 Organisation 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.”

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