A Heartfelt Story of a Mom and Her Son with Down Syndrome

Mrs. Munkhtseren, a board member of the Down Syndrome Association of Mongolia, is a wonderful, loving, and invincible mother of a boy with Down syndrome. As a mother of a 16-year-old child with Down syndrome, she talks to us about the challenges that she faced with bravery.

A Shocking Day with an Unprofessional and Rude Doctor

Our guest became a member of the association in 2008 when she registered her child as the 30th child with Down syndrome on the association’s list. Through her active involvement and dedication to the Association’s work, Mrs. Munkhtseren was elected as a board member in 2011.

Mrs. Munkhtseren began her story with the birth of her third child, Tsolmon, whom she had in her thirties. Since her baby was born on a Friday, she couldn't have her son checked by a neonatologist over the weekend. On the following Monday, after having checked her baby, the neonatologist told her that she wouldn't be discharged from the hospital yet and needed to come to see him in his office. Mrs. Munkhtseren recalled that while she waited for the neonatologist to finish checking on other newborn babies, which felt like an eternity, she was panicking and wondering what had gone wrong. Eventually, the neonatologist told her that her baby was born with Down syndrome and had an intellectual disability. However, instead of being informed about Down syndrome and receiving consultation and support, she was scolded by the neonatologist for giving birth with a long gap after the last pregnancy. It was the most shocking and stressful day for her.

Unprofessional and Insensitive Actions by Medical Staff

But what upset Mrs. Munkhtseren was that she wasn't informed about the fact that most children with Down syndrome are at risk of being born with hypodynamia and that’s why the baby couldn’t receive the nutrition from the breast milk and why the baby only slept, which later caused jaundice in him. Due to jaundice, Mrs. Munkhtseren had to stay at the hospital for another five days. There was no neonatologist or nurse by her side who would console her and she only kept crying while holding her baby. Those five days, she bitterly stated, were the darkest days of her life. She strongly believes, even to this day, that she wouldn't have needed to go through those horrific days if only the neonatologist told her about how adorable a child with Down syndrome can be. Back then, no institution was capable of giving advice about Down syndrome. Based on her bitter experience, she suggests that hospitals should employ a psychologist who can advise and consult with the parents of newborn babies with Down syndrome. This view is shared by all our previous guests – the country is missing an institution that would help parents with a disabled child or those who are experiencing any type of disability.

Mrs. Munkhtseren expressed that doctors were unreasonable and lacked the empathy to give proper explanations about the potential developments of children with Down syndrome. As for the parents of children with Down syndrome, they regret that they couldn’t be supported and advised psychologically, so the Down Syndrome Association of Mongolia has taken many meaningful and impactful actions over the last decade.

Unceasing Efforts of Parents for the Education

Mrs. Munkhtseren's son has a speech impediment meaning that he can't speak clearly. She and her husband were advised to let their son develop through social interactions with children. Her son went to public and private kindergartens until he was seven years old. He could eat and use the potty by himself, and he was well behaved at the kindergarten. In fact, Down syndrome children usually follow the way they learned to do something. Later, when Mrs. Munkhtseren's son was about to go to school, the parents from the Mongolian Down Syndrome Association decided to create a special class on their own. So, she had her son enrolled in the special class. Several children with Down syndrome, including Mrs. Munkhtseren's son, used to study according to the curriculum prepared by the parents and the teacher. They invited a special education teacher to conduct the lessons with the children in a privately owned three-bedroom apartment. But, in this manner they still were isolated from society and from children without disabilities. Luckily, the Mongolian Down Syndrome Association received a micro-grant from the Japanese International Cooperation Agency (JICA) for an experimental project and they created a special class for children with Down syndrome led by two teachers at the 130th Secondary School. Many people were so kind to help voluntarily, which greatly helped to develop and enrich various lessons. The parents paid for the teachers out of their own pocket, which hasn’t been easy for these parents.

Later, their request to have a special class affiliated with the name of the 63rd Secondary School, was approved. The children were officially registered to the students' integrated system. Today, the children are registered as students of the 63rd Secondary School and the special class is still located at the 130th Secondary School.

Furthermore, the children are evaluated on annual basis by the special education teachers of the 55th Secondary School. Through the annual evaluations, the parents can keep track of improvements of their children. Additionally, the homeroom teachers plan and prepare the curriculum specifically for each student based on requests from the parents. Mrs. Munkhtseren wants to focus on her son's self-sufficiency, since he can't speak.

Immense Need of Care Centers

When we asked Mrs. Munkhtseren how she sees her son's future, she openly expressed that she has four children so she wouldn't let the life of her child with Down syndrome disrupt or negatively impact her other three children’s life and development. Thus, she saves money for the future care of her child with Down syndrome. She wishes for care centers to be built that could provide various care services and fulfill the customers' requests. There aren't enough institutions for people with intellectual disabilities in Mongolia. It is becoming very clear for us that all parents are terribly worried about their children’s future and here, the state needs to develop a policy to ameliorate the worries and grievances of these parents. This will show how humane the society is, and how inclusive we can be to help one another in need of support and understanding.

Raise awareness of the Down syndrome

Concerning the mental health of the parents, Mrs. Munkhtseren conveyed that she got easily frustrated or stressed out in her early years whenever someone would look at her son askance. For the parents who are already sensitive, it is very unpleasant and stressful. As she observes, people who are aware of her son's situation never show a negative attitude. That's why we need to raise awareness regarding Down syndrome among people and society. Now, she tries not to care about the stares of others and just confront them, so she can go anywhere with her son without any worry. Yes, it will require cooperation from all of us to change the attitude. We do need to communicate and share all feelings at all levels/in all areas of life and across all generations – to reduce the fear and sensitiveness on both sides.

In connection with the Mongolian “Law for Disabled Persons” which was adopted in 2016, there are many changes made to the rules and principles. The attitude of people is getting better and better as time passes. However, she still appeals to people to try for positive changes. Since many kinds of human beings are living in this society, we need to consider the situation of others before making any judgements.

Author: Batdelger Batbayar is a graduate of the School of Foreign Service at the National University of Mongolia. She has gained experience in corporate foreign relations as she worked with foreign business partners on a variety of projects in mining development, construction, and IT sectors. 

Editor: Riya Tikku has specialised in the politics of humanitarianism, human rights, international migration, and diaspora studies. As postgraduate from University of London (SOAS) in MSc Politics of Conflict, Rights, and Justice, she focused on the relationship between politics, norms, and law. In Mongolia, she provides editorial and research consultancy for think tanks and INGOs. She is also working as a teacher of Global Perspectives and International Relations.

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