KINLEY KHANDU CHODEN | Thimphu
When Tshering Chezom first saw the word “autistic” written in capital letters on her child’s prescription, she did not know what it meant.
Her son, Chimmi Namkha Peljor, was two years and three months old. A doctor at Jigme Dorji Wangchuk National Referral Hospital had identified him as autistic, but the diagnosis was not explained to her verbally. Instead, the word appeared on the prescription.
Tshering Chezom returned home with questions she could not answer.
“I wondered what autism meant, and my mind completely went blank,” she said. “I could not think about what to do because I had no knowledge about autism.”
At the time, awareness about autism was limited. She was living in Wangdue, where her husband worked as a teacher, and there were no therapy services available there.
Her concerns grew as she struggled to understand how to support her son.
Her child could not communicate basic needs. When he was hungry, he could not say that he wanted food. He could not tell his parents when he needed to use the washroom. There was also no medicine that could simply be given to him for autism.
“I became very worried and sad,” she said.
The uncertainty affected her deeply. She stopped wanting to meet friends or go outside and spent much of her time thinking about her son’s future.
“I would look at my child and cry,” she said. “Sometimes I would watch him while he was sleeping and wonder what I should do for him and whether his whole life would remain like that.”
She worried about how he would manage his life when she was no longer around to support him.
The constant worry also affected her sleep and appetite. She felt that going out with friends or doing things for herself was a waste of time when she could be doing something for her child.
Eventually, Tshering Chezom realised that remaining consumed by worry would not help either of them.
“I realised that constantly worrying would only affect my mental health,” she said. “Instead of making myself mentally weak, I decided that I needed to be strong for my child.”
She began looking for small ways to keep herself occupied and mentally well. While her son was sleeping in the mornings, she would pray, watch programmes and do gardening. She also began taking him outside.
Whenever she needed to travel from Wangdue to Bajo for shopping, she would carry him on her back and go with her friends.
These activities did not remove the challenges she faced, but they helped her remain mentally stronger as she navigated life with her child.
A major change came in 2019, when her cousinsister, who is now a teacher at Changangkha MSS in Thimphu, told her about an inclusive school for autistic children.
The conversation prompted her to make a decision. She moved to Thimphu with Chimmi so that he could attend school.
The transition was not easy.
The family had been living together in Wangdue, but moving to Thimphu meant living in a rented house. She had no job, while her husband continued working in Wangdue. The family therefore had to manage two households.
There were additional costs, including travel and taxi fares. Tshering Chezom also had to send her son for tuition at VTOB, which provides support to children with disabilities.
Managing two households on a limited income was difficult.
Before moving to Thimphu, Chimmi Namkha Peljor had attended a mainstream school in Wangdue for about a month. It was his first experience in a school environment, and he struggled to adjust.
“He would not remain seated, and during assembly he would cry loudly, shout and refuse to attend classes,” Chezom said.
Because it was a mainstream school, his behaviour disturbed other children. The family eventually decided that moving him to Thimphu would provide a more suitable environment.
The move brought another challenge that Tshering Chezom had to learn how to navigate support systems she knew little about.
After arriving in Thimphu, a friend introduced her to PHENSEM Parents Support Group, an organisation that supports parents of children with special educational needs. She registered with the organisation, initially believing that it provided therapy or other direct services to children.
She soon realised that its focus was different.
“It was mainly about supporting parents, self-care and sharing experiences with other parents about how they were supporting their children,” she said.
The support gave her an opportunity to meet other parents facing similar concerns.
Before joining Phensem Parent Support Group, an idea from her brother-in-law, a doctor who was undergoing training in Tamil Nadu, gave her a new way to help Chimmi communicate.
One of the most important things she learned was how visual cards could help her son communicate.
Before using them, he would take his mother’s hand and lead her to the rice cooker whenever he was hungry.
Chezom created a visual card showing rice.
The card became a new way for her son to express his need.
“He started showing me the card to indicate that he wanted food,” she said.
What began as a strategy to help her own child eventually became something she could share with other parents.
After she shared her experience with around 10 to 12 parents, PHENSEM gave her the opportunity to teach other parents during weekends.
At first, Chezom was hesitant.
She worried that she was not educated enough to stand in front of other parents and explain the technique. She compared herself with other parents whom she felt were more educated and confident.
But she also recognised that her experience had value.
“I thought that if the idea had helped my child, it could also help other children,” she said. “Many parents may be educated but may not have an idea about using visual cards.”
According to Chezom, parents have told her that the cards have benefited their children and have given positive feedback about the approach.
For her, the experience has also changed how she sees her role as a mother.
Her journey has not been only about finding ways to communicate with her son. It has also been about learning to think about his independence and future.
Tshering Chezom says parents of children with special educational needs face concerns that can differ from those of parents of typically developing children.
While parents generally think about their children’s education and future, she said parents like her also have to think about whether their children will eventually be able to manage daily life independently.
“Our biggest concern is not when we are with our children because when we are present, we can at least manage and support them,” she said. “The bigger worry is what will happen when we are not there and who will take care of them.”
That uncertainty, she said, can increase the stress experienced by parents, particularly mothers.
Support from her husbandand other family members therefore becomes important, especially when children are not yet fully independent.
For Tshering Chezom, the fear of what might happen in the future remains, but it is no longer the only thing she sees when she looks at her son.
She can now see his progress.
Looking back, she remembers the period when there was little awareness about autism and the difficulties she faced while searching for help.
When Chimmi could not speak, the family also followed traditional beliefs and thought his condition might have been caused by bad energy from deceased people. She took him to lamas and different lhakhangs seeking help.
She carried him frequently during those journeys, eventually affecting her shoulders.
Even though taxi fares were cheaper at the time, transportation remained difficult to afford because the family was supporting two households.
She remembers the experience as a period of uncertainty in which she tried different ways to find help for her son.
Today, she looks at those hardships differently.
“I can see the results of all the hardships and efforts I made in my child’s progress,” she said.
Sometimes, she wonders whether her son might have progressed further if she had known earlier about the support available in Thimphu.
“But I have tried my best, and I can see many improvements in him today,” she said.
Her family’s support, she added, helped her remain strong throughout the journey.
ChimmiNamkhaPeljor is now 16 and studies in Grade 7 at Changangkha MSS .Tshering Chezom continues to accompany him to school every day, from the morning SUPW session until the evening prayer.
She does not hire a special educational needs aid since she prefers to stay with her son herself because she finds it difficult to entrust his care to someone else.
At school, she helps him with his subjects and guides him during pull-out classes, showing and telling him where he needs to go.
Even when he goes to the washroom, she watches from a distance, not to do everything for him, but to allow him to learn.
She wants her son to become as independent as possible.
That is also the message she now shares with other parents.
“It is never too late to teach their children to become independent,” she said. “Parents should not keep their children behind or underestimate what they can learn.”
For her, independence is not something that happens all at once. It is built through small opportunities, patience and continued support.
She is still working on it with her son.
The mother who once stared at a prescription and wondered what autism meant now spends her days helping her son communicate, learn and navigate his surroundings.
Her journey has been marked by uncertainty, financial difficulties, emotional struggles and years of searching for support. But it has also given her something she did not have when she first saw that word on the prescription: a better understanding of her child and the belief that he can continue to learn.
“I am also continuing to work on this with my child,” she said.
