Last week, under the framework of the COVID-19 appeal to help children with Down syndrome (DS) in Tajikistan, the Public Organisation ‘Nazari Digar’ conducted a charity campaign in the rural area of the district Devashtich (Gonchi) – where we provided monthly food packages, vitamins, masks and disinfectants to the families of children with DS. Now we want to continue to tell you about our children and their families.
In Devashtich, a remote village called by locals the ‘uzbek kishlak (village)’ lives the lovely boy Shuhratzhon, who has DS. He is 15. I remember how I got to know his mother back in August 2019, at the parents’ forum of children with DS in the northern part of Tajikistan, which was organised by Nazari Digar.
One woman approached me during the workshop break and started to talk to me. At first I couldn’t understand what she was saying, but soon realised that she had a severe speech impairment. After our first chat I started to get to know this lovely family better, and I have been in touch with them over the last 7 months. Shuhratzhon’s father has a disability as well; he is deaf. Neither of Shuhratzhon’s parents is able to work, as there isn’t any appropriate work for them in the small, remote village. They live on very small disability allowances, and thankfully their family help them whenever they can.
This year, Shuhratzhon is graduating from school which is called ‘special school’ in Tajikistan but it is a closed state institution where children with disabilities reside (they attend it from the age of 7 to 16) in Khujand. Shuhratzhon’s mother is very worried about his future: ‘Where will my son go after he leaves this school? What will happen to him? What kind of life he will have? Will he find a job and be employed?’. His mother is concerned that Shuhratzhon does not know the alphabet or numbers; he cannot write or read. During all these years in a closed institution he didn’t learn any of this, and she is lost and doesn’t know how to teach him…she was seeking me for advice and help.
Children with special needs are very sensitive, especially when they have parents who have disability as well. What do the parents of children with Down syndrome feel, when they themselves have a disability…when they themselves cannot find employment but they somehow have to take care and support their children with special needs for the rest of their lives – especially in the given the context of Tajikistan? For children with DS, there is nowhere to go after they graduate the state institution at the age of 16. None of the vocational colleges admit them…
At the moment, Nazari Digar is developing a special program to help families who have children aged 16 upward. We are researching this issue and finding solutions on how to support teenagers and adults with DS, and we are also closely looking into the employability of people with DS in Tajikistan.
Shuhratzhon’s mother approached me several times due to the coronavirus spread in Tajikistan, and asked for help. She said since they live in such a remote village no other organisation has reached out to them. Shuhratzhon and his mother were extremely thankful for all the food, vitamins, masks and disinfectants they received. They were grateful that even though they live so far away, the team of Nazari Digar did not forget them and delivered nutritious food packages and vitamins. Please support our families by donating to our COVID-19 appeal.