In Ulaanbaatar, Mongolia, Holt strives to meet the changing needs of 15-year-old Batbayar, a boy with cerebral palsy who is growing too big — and too smart — for his environment.
When I meet Batbayar*, he sits over a lunch of mutton stew, flipping through the latest fall catalog of a local department store. Although Batbayar has cognitive delays as well as cerebral palsy — a neurological condition that affects his muscle coordination and physical movement — he is obviously very bright, and insatiably curious. As he eats his lunch, the caregivers keep an eye on him to ensure he is managing the fine motor tasks needed to use his utensils. He responds to their inquiries with a smile and a glint in his playful eyes. He pays close attention to the other children, the caregivers, and the strange visitors in the room — observing everyone with utmost curiosity between bites of stew.
Batbayar is unique. As one of the few children in the Rainbow Unit who is able to feed himself, he gets the luxury of eating at a leisurely pace.
Batbayar spends his days in this colorful, sun-filled room with the nine other children with special needs who live at the National Children’s Sanatorium (NCS) in Ulaanbaatar, Mongolia. This room has plenty of windows to let in the sun and a view of the outside world. It is directly attached to their sleeping quarters, dining room and bathroom. Also, just down the hall is an extensive therapy room, where the children receive regular physical therapy.
Fifteen years ago, Batbayar was found all alone as an infant in Ulaanbaatar. Taken into care at the National Children’s Sanatorium, he has grown up here — and considers it his home. Very likely, his special needs were more than his family could provide for — compelling them to leave him in a place where he could be found and cared for.
Early on, Batbayar’s social workers diligently attempted to find for him a domestic adoptive family in Mongolia. But they were unsuccessful in finding a family up to the challenge of meeting his needs. Holt also sought a permanent, loving family for him in the U.S., but was also ultimately unsuccessful.
“Holt did, however, work to ensure that he would always be well cared for at the NCS,” explains Paul Kim, Holt’s director of programs in Korea and Mongolia.
In the past, this could have been the end of the road for Batbayar and other children like him. Not long ago, children with disabilities in Mongolia who could not be placed with a family by the age of 5 years old were sent to an adult mental institution.
Reports of these institutions are the stuff of nightmares. Children are left alone, in the dark, on the floor. They receive no love, attention or much-needed therapy to help their bodies cope with their special needs. Children that are sent to these institutions often die before they are 16 years old. For Batbayar, moving from the NCS would have been more or less a death sentence.
Fortunately, over a decade ago, when Holt heard about this situation, we began immediate advocacy, and refused to send any children in our partner’s care to such a dismal, hopeless place. Now, when we fail to find a family for children like Batbayar, they get to stay.
Batbayar is now 15 years old and doing well.
But unfortunately, despite all of the love and nurturing care the staff at the NCS provides the ten children currently living in the Rainbow Unit, the care center is only truly equipped to care for children up to 5 years old. As more and more children like Batbayar reach their teens years, they begin to face challenges and unmet needs. Most importantly, Batbayar’s wheelchair is much too small for him and doesn’t have the supportive straps he needs. He spends most of the day crouched over, which, if not corrected, could lead to permanent contractures. Holt has identified a local manufacturer that can provide him with a bigger, custom-fit chair, but is still seeking the funding to purchase it for him.
He is also getting heavy! Caregivers are struggling to lift him from his bed to his chair, to bathe him or take him to the therapy room. Holt is trying to help by sourcing a lift to assist caregivers with safely moving older children as needed. For now, they are doing their best to safely move Batbayar and his peers from place to place.
As he grows older, the NCS also faces the challenge of meeting Batbayar’s changing intellectual needs. Remember that bright, curious mind of his? He is very under-stimulated and does not have much opportunity to learn or explore — in part due to insufficient age and disability-appropriate learning tools. To help meet this need for Batbayar, Holt is working with NCS to get him an iPad, pre-loaded with targeted applications for him to learn and play with. We believe this simple technology will provide much-needed stimulation to enable him to expand his world.
“Despite his physical challenges, there was always that sparkle in his eye,” Paul shares of Batbayar, who he first met over a decade ago when he was just a toddler. “That curiosity and that wonder has always been present, and we want to ensure that curiosity and intelligence will always be nurtured.”
While there is work to do still, and needs unmet, we are proud that Batbayar has an opportunity to continue growing and learning in a safe and loving environment. He has access to doctors, and routine visits from occupational, physical and traditional Mongolian massage therapists. His basic needs are being met. He has good relationships with his caregivers and he has advocates at Holt who are striving to equip NCS with tools and resources to make his life — and the lives of other orphaned and abandoned children with special needs — even bigger and better.
Aloura DiGiallonardo | Nutrition Initiatives Coordinator
Help children like Batbayar receive the therapies, resources and specialized care they need. Give a gift to the Molly Holt Fund for Children With Special Needs!
* name changed