The phrase “your child may have Down syndrome” causes mental block in every parent with this problem. Often doctors in maternity homes suggest leaving the child and mothers agree to. This is all done because of a number of myths around this syndrome, the key one of which is inability to speak, read and write.
Down is a doctor, not a person with the syndrome
The nature requires that each human cell contain only 46 chromosomes, amounting to 23 pairs. Half of them are coded genetic information transferred from mother, and another half from father. In a person with Down syndrome, there is an additional, third chromosome in the 21st pair of chromosomes, so there are 47 chromosomes.
Children with Down syndrome have been born at all times, but it was first described by a British physician John Langdon Down in 1866. So, the disease was named as Down syndrome.
Down syndrome is not a disease, but a genetic condition. The science still cannot tell the reason for such a condition, but, as noted, such a child can be born in any family: no matter the nationality, social status, income level, parents’ education, way of living, geographic location, religion.
To make children with Down syndrome full members of the society in future, they should be taught as soon as possible.
In Kyrgyzstan, according to the Electronic Healthcare Centre, there were 328 children under 14 with Down syndrome as of 2020. There is no information available for 2021.
According to the law “On state benefits in the Kyrgyz Republic,” children with Down syndrome have a right to a monthly benefit. From January 1, 2022, the payment amounts to 8 thousand som (94.36 dollars). Moreover, some parents may receive payments under the “Personal Assistant” system depending on the conclusion of the medical expert service.
In February 2022, the second Global Disability Summit was held online. Thousands of representatives of UN, international organisations, heads of states and governments gathered to discuss the opportunities for improving lives and inclusion of people with disabilities. Although Kyrgyzstan ratified the UN Convention on the Rights of Persons with Disabilities in 2019, it is slowly implemented.
Kyrgyzstan does not have the early intervention system developed
Dina Eshalieva is one of the founders of the Sunterra Public Foundation. In 2016, a group of parents of children with Down syndrome came together to help both each other and children with the diagnosis. Dina knows how to raise such children like no other.
“Down syndrome is unique because it is diagnosed almost as soon as a baby is born,” Eshalieva said. “Experienced doctors can discern distinctive signs, for example, specific shape of the eyes, a flattened face, hypotonia, and diagnose Down syndrome immediately. However, the final diagnosis is made after the karyotype test.”
Dina’s daughter, Abigale, was born on September 5, 2011. After birth, when Eshalieva was in the operating room, a neonatologist approached her and told that a geneticist needed to be consulted.
“Does my girl have Down syndrome?” Dina asked instinctively.
The woman does not know why she thought like this. However, she had heard from many parents that they could feel that their child had Down syndrome long before their birth. And Dina was not an exception – sometimes she had thought about Down syndrome during pregnancy. The neonatologist did not say anything but ‘we’ll talk after the test.’ And after the karyotype test was made, Abigale was officially confirmed to have Down syndrome.
“I fell into depression,” Eshalieva said. “I was not the only one. Most parents experience such severe depression.”
She could pull herself together only with the support of her spouse Nurmat and relatives. The family steeped itself in the syndrome. The spouses started consulting with Downside Up fund in Moscow, which helped parents with children diagnosed with Down syndrome across CIS.
“We received reliable, scientific, evidence-based, adequate information from them,” Dina said. “When we were prescribed some medicines, I consulted them first, and they told me whether we should take such medicines or not.”
According to Dina, the Moscow-based fund helped her a lot and provided psychological support to her.
“When I met with other parents, I felt much encouragement,” she said. “It was not easy to find parents of children with Down syndrome back then because many parents denied this condition in their children.”
At the age of three, Abigale was admitted to a mainstream kindergarten. According to Dina, it has played an important role in her development.
“Children with Down syndrome have enhanced imitating skills. In other words, they start imitating other kids,” Dina said. “Therefore, we think that the best environment for them is to be among other children.”
Abigale is 10 now. She studies at the fourth grade of a private school with advanced study of English. The girl speaks Russian and English, understands Kyrgyz, can count, reads fluently, and can retell what she has read.
According to Eshalieva, Abigale is called a “future secretary” or “future assistant” at home.
“When we go to buy some food to a store, I always ask her to remind me what we should buy,” Dina said. “And she reminds me.”
According to Dina, Abigale is different from her peers in some aspects. Nevertheless, she is a good helper at home and a perfect sister for her younger brothers. The family has managed to achieve such results because they accepted the diagnosis, did not use special methods, did not give Abigale some medicines, but developed her as a normal child. The older the girl became the less significant and obvious her syndrome became for parents.
In addition to Abigale, the Eshalievs have three more sons. The youngest son – Eliazar – is an adopted child. The boy was preliminarily diagnosed with Down syndrome and the woman who gave birth to him left the boy at the maternity hospital. Dina and Nurmat decided to adopt the child.
Eliazar is six now. According to Eshalieva, he is very smart and easy-going. If Abigale is developing academically, Eliazar likes to communicate with people. According to Dina, it means that the same diagnosis does not mean the same development model. Every child with Down syndrome is individual and complete person just like any other person.
The case of Eliazar, when a birth mother leaves a baby at the maternity hospital, is not the only one, unfortunately.
“The fact that Down syndrome is diagnosed at once is probably the most sorrowful part of the diagnosis,” Eshalieva said. “Before there’s a relation between mother and child, she is told straightforward about suspicions and it gives her a shock.”
Sunterra fund has been cooperating with Uplift organisation, which prevents leaving children in orphanages, for a few years.
“When a baby is born with Down syndrome and mother wants to leave it, doctors contact social services, which, in turn, contact us,” Eshalieva said. “We visit mothers and speak to them, telling them about baby’s development, providing some psychological support to them. And it makes us happy when parents take the child instead of leaving it in care of the state.”
Also, Sunterra fund has held various workshops on how to tell the diagnosis to parents. Psychologists from the Behavioural Health Institute, AUCA, have developed the protocol to diagnose and manage children with Down syndrome. According to Eshalieva, the document was already approved and published on the website of the Ministry of Health. However, not all physicians know about it and use it in their work.
“The protocol tells in detail what should be done when patients with Down syndrome visit them,” Dina said. “Moreover, it outlines a correct and professional approach to how to tell the diagnosis to parents properly.”
According to Eshalieva, this is a very important aspect because the psychological condition of mother and father and further fate of the child depend much on how they are told about the diagnosis. The protocol was presented at the workshop at Osh. Sunterra fund wanted to introduce it in Bishkek, as well as among physicians across the country, but the coronavirus pandemic suspended this activity.
As Eshalieva noted, the main difficulties are that Down syndrome has many prejudices, and such people are stigmatised.
“Many people think that the syndrome means that a person is mentally retarded. However, it’s not true,” Dina said. “There may be developmental delays, some mental features, but it does not mean that a person does not understand anything.”
Moreover, Kyrgyzstan has not developed the early intervention system. It provides for a range of services by speech therapists, psychologists and other specialists that help with the overall development of a child from 0 to 3-4 years. There are few special educators who could prepare correct inclusive programmes for teaching children with diagnosis, few occupational therapists, i.e. people who help such children learn routine skills, few speech therapists.
According to Dina, given the shortage of such specialists in the country, some mothers have undergone retraining after giving birth to children with Down syndrome and have become speech therapists, special educators, and physical therapists. Now they provide assistance to other parents and children with Down syndrome.
Cholpon Mambetaipova, chief specialist of the office for development of social services to people with disabilities and the elderly citizens, said to CABAR.asia that Kyrgyzstan currently created the interagency working group to draft the programme and action plan.
“In other words, such terms as “early detection” and “early intervention” will be available in the “Accessible Country” programme,” Mambetaipova said. “And we are planning to follow these plans to the logical end.”
However, it is still unknown when these programmes will be implemented, but according to Cholpon Mambetaipova “a lot of work will be done” and “a lot of things will be needed to do.”
Difficult access to education
Elida Tolomusheva is the third child in the family. Two older children are boys, so parents waited edgily for the girl.
According to mother Aichurek Kulmirzaeva, the baby girl was born in 2014. The neonatologist had examined the girl and suggested them to go to the Clinic of Reproduction and Health saying that the child had “numerous stigmas of dysembryogenesis.” Aichurek did not know what it meant and started searching for some information on the internet. The search engine suggested that “numerous stigmas of dysembryogenesis” meant genetic disorders. Later on, they got a karyotype test and Elida was diagnosed with Down syndrome.
To learn how to develop her daughter, Aichurek retrained as speech pathologist therapist. This autumn, Elida is turning eight years old and she has almost the same skills as ordinary children.
“My daughter goes to a regular kindergarten, attends a rhythmic gymnastics club and musical school. She speaks, yet not always legibly, learns how to read and write,” Kulmirzaeva said. “We could do it because the spouse and I started developing her physically and intellectually from the early childhood.”
However, before Elida could attend a kindergarten, Aichurek received 20 refusals from preschool facilities.
“Many kindergartens in Kyrgyzstan are not ready to take children with Down syndrome,” Kulmirzaeva said. “They prefer such children to special kindergartens. I think that placing a child into a special kindergarten or special school is a segregation.”
Elida was admitted to musical school and rhythmic gymnastics club with caution. But over time both teachers and trainers saw that the girl was quite trainable and are not scared of working with her.
Now Elida’s parents have another issue – to choose a school for her.
“We’d like to have our daughter study with her regular peers,” Aichurek said. “We want a school with individual curriculum for Elida because it’s clear that the general curriculum is not for her.”
Kulmirzaeva started looking for a suitable school for her daughter last year, but she gets only refusals everywhere. Moreover, according to Aichurek, doctors, mainly neurologists, prescribe many medicines to “treat Down syndrome.”
“But the extra chromosome won’t disappear from it,” she said. “Children with Down syndrome should not be treated, they should be developed, taught to be self-dependent, taught to accessible professions.”
Therefore, according to Kulmirzaeva, the state needs to introduce the inclusive programme in Kyrgyzstan, raise public awareness on the correct development of children with Down syndrome.
Saltanat Mambetova, leading specialist of the Ministry of Education, said to CABAR.asia that there are children with Down syndrome studying in general education schools of Kyrgyzstan.
“However, these are mainly junior school students,” Mambetova said. “Children with Down syndrome have certain difficulties in studying such subjects as physics, geometry, chemistry or algebra.”
Given this fact, according to the specialist, children with Down syndrome are placed into special schools, which have special curriculum for their development.
“In other words, they can study, but they cannot master the whole school material in full, so a simplified option is provided for them,” Mambetova said.
State support needed
Aliakbar Abitov turned nine this year. The boy was suspected to have Down syndrome right after he was born, just like many other children. After the karyotype test was made, the diagnosis was confirmed.
Afterwards Aliakbar’s mother, Rano Abitova, started looking for information about the syndrome on the internet.
“There was so much wrong information and it made me feel even more depressed,” Abitova said. “Later on, I could meet and talk to other parents who helped me to get out of this depressive condition.”
Aliakbar started attending various classes, including musical ones. Now he feels the rhythm, knows many songs by heart, and sings them along. In general, according to Rano, the boy is very curious and sociable. Abitova is sure that they could achieve such results because parents did not hide the boy from the people and always came out with him.
“Some parents feel ashamed of their children with the syndrome,” Rano said. “They do not come out and it is very bad because children diagnosed with the syndrome are retarded in their development, which is not good for their condition.”
The main difficulty faced by the family was the placement of the child to a kindergarten. Abitova visited a few preschool facilities, and she was denied almost everywhere. Later, she managed to find a suitable kindergarten and Aliakbar was attending it for two years. Now the child attends lessons in Sunterra resource centre.
Abitova retrained as physical therapist and now works in Sunterra Centre. She provides psychological and other help both to children with Down syndrome and to their parents.
“The centre covers now 40-50 children,” Rano said. “They all study in shifts. We’d like to increase access to our services, but we cannot do it because our premises won’t allow.”
According to Abitova, it would be great if the authorities or someone else could provide a place to the fund, where specialists could increase access to their services and conduct required therapy to children with Down syndrome.
“The state should support such parent organisations as ours,” Rano said. “We, parents, are interested in the development of our children and we could do it better if the state supported us.”
According to Cholpon Mambetaipova, chief specialist of the office for development of social services to people with disabilities and the elderly citizens, Kyrgyzstan has a great demand for state rehabilitation centres not only for children with Down syndrome, but also for other children with disabilities. However, their creation requires a lot of funds and time.
Besides, according to Mambetaipova, some organisations do not contact the state and they are funded by sponsors, get external assistance and get paid by parents.
“However, we see that the number of children with disabilities increases every year,” the expert said. “Therefore, we think about training of various specialists via non-governmental organisations. Also, payments under the “Personal Assistant” system could be increased in future.”
And yet it is unknown when all plans will be implemented and to what extent the payments will be increased. It all depends on big money.
This article was prepared as part of the Amplify, Verify, Engage: Information for Democratisation and Good Governance in Eurasia project implemented by IWPR and funded by the Norwegian Ministry of Foreign Affairs, and mentoring program of the Development of New Media and Digital Journalism in Central Asia project implemented by IWPR with the financial support of the UK Government. The content of the article does not reflect the official position of the IWPR, the Norwegian Ministry of Foreign Affairs, or the Government of the United Kingdom.