19 August 2013

Play for today: supporting children with disabilities

Zulbayar and Temuulen at a playgroup for children with disabilities
© UNICEF Mongolia/2013/Andy Brown
Temuulen is a nine-year-old boy with disabilities living in Nalaikh, a small town near Ulaanbaatar, capital of Mongolia. It is a coal mining district, with a mixed-ethnic community including Mongolians and Kazakhs. Temuulen has a rare genetic condition that causes muscle wasting. The symptoms started when he was three and have got progressively worse.

Once a week, Temuulen attends a playgroup for children with disabilities at the local hospital, run by the Association of Parents of Children with Disabilities. There is one room with toys and learning materials for the children, and another for the parents to meet and socialise.  “I like playing with toy cars,” he says. “My best friend is Zulbayar.”

A few months ago, Temuulen won second prize in a ‘shagai’ competition. This is a traditional Mongolian game played with the ankle bones of sheep or goats. The bones are painted in bright colours and thrown like dice. Each bone lands in one of four positions, called horse, camel, sheep and goat. “I won a silver medal in the ankle bones competition,” he recalls. “It was a lot of fun and I was excited to win. The competition was on a winter day. There was a great snowstorm outside.”

Tumuulen lives with his mother Tuya, who cares for him while his father goes to work in Ulaanbaatar. The family used to have their own ‘ger’ tent but lost it in a fire three years ago. Temuulen was at home at the time but luckily he was in the outside toilet and survived the blaze. Since then, they have lived in a ger belonging to another family. Tuya has four other grown up children. She used to be a librarian but left work to look after Temuulen. Now, the family has a small business making wooden furniture.

Temuulen plays with a toy at the playgroup
© UNICEF Mongolia/2013/Andy Brown
Tuya is an active member of the Parents’ Association. She comes regularly to the playgroup, which provides a break from her and Temuulen’s daily routine. “The club helps the parents and children forget their problems for a while,” she says.

Tuya has many problems to forget, not least her son’s life expectancy. “My oldest son had the same condition,” she says. “He was bed ridden for five years. Eventually his heart stopped and he died. He was only 13 years old. I’m really afraid the same thing will happen to Temuulen. He has the same symptoms and the doctors say there is no cure.”

UNICEF is supporting the local government and Parents’ Association to help children like Temuulen and their families. “In Nalaikh, we provide training for parents in the association to become peer counsellors,” Mandal Urtnasan, head of the child friendly communities programme at UNICEF Mongolia, says. “Each parent ‘adopts’ ten other families. They provide them with advice and support, and make sure they are able to access social services.”

In other districts, UNICEF provides equipment for family doctors to help them diagnose disabilities at an early age, improving the child’s chance for effective treatment. “We also work closely with local authorities and policy makers on the inclusion of children with disabilities in mainstream health, education and family support services,” Mandal adds. “This is part of our strategy to address inequality by targeting the most vulnerable children and communities.”

Getting better

Oyunchimeg with Zulbayar and Hulan outside the family’s ger
© UNICEF Mongolia/2013/Andy Brown
Nine-year-old Zulbayar is Temuulen’s best friend. The boys met at the playgroup for children with disabilities. As a baby, Zulbayar had a stroke that paralysed the left side of his body. He is now confined to a wheelchair and moves in a jerky, uncontrolled manner. But his mind is sound and he can communicate with his family and friends.

Zulbayar shares a ger tent with his parents and five-year-old sister Hulan, in a yard next to a meat processing factory. His mother Oyunchimeg is now expecting her third child. Outside the ger, a new road is being constructed. Despite the noise and the dust, the family are happy at the prospect of more business. “We receive animal hides from herders and sell them,” Oyunchimeg says. “We plan to open a small shop along the new road.”

Oyunchimeg runs a local NGO called ‘Fire and Spirit’ for children with disabilities, and is also a member of the Parents’ Association. She helps organise events for children with disabilities, including ankle bones games and chess competitions. “The children are very talented,” she says. “They have a lot to say and like to sing and dance.”

UNICEF helped the Parents’ Association do an assessment of children with disabilities in the district. “Some parents hide their disabled children away because they feel ashamed,” Oyunchimeg continues. “The UNICEF tools helped us reveal more children. We now know there are 80 children with disabilities in this district.”

Although at the moment Zulbayar’s disability is more severe than his friend’s, there is one crucial difference between the two boys: while Temuulen is getting worse, Zulbayar is getting better. “We sent Zulbayar to a rehabilitation centre in Ulaanbaatar,” his mother says. “It helped a lot. Now he can sit up on his own and speak. He says: ‘Mum, I finished my exercises’. The doctor says there have been a lot of improvements. Eventually he should be able to stand up on his own.”

With his future looking brighter, Zulbayar is due to start boarding school in Ulaanbaatar in the autumn. “He is very excited about going to school,” Oyunchimeg says, smiling. “He already has his notebooks and school bag.”

Hulan shows the other children a calendar with pictures of animals
© UNICEF Mongolia/2013/Andy Brown
The author
Andy Brown is Communication Consultant for UNICEF East Asia and Pacific

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