In Isfara, a town of 38,000 in a remote northeastern part of Tajikistan near the Kyrgyzstan border, our community based rehabilitation project is working with children with disabilities and their families.
Amina* has been working with us as a local staff member since 2016. She herself is a mother of a child with disability, and has learnt and grown a lot since bringing her daughter to our groups
Part of our work in Isfara is also regular training for the workers of the local Social Assistance unit, and twenty of their local staff attend weekly trainings regarding how to work with children with disabilities. One of the training topics was how to use activities and active exercises to help children with disabilities learn and show progress in development. We asked Amina to share briefly about her own experience of working with her daughter who has cerebral palsy and severe spasticity in both her arms and her legs.
Amina reports about this experience of speaking up during the training: “At first I was afraid to speak up in front of this group of government workers. But then once I started speaking to them, it felt like the words just flowed, and I couldn’t stop sharing with them all the things I had experienced and tried with my own daughter. I shared with them about how I used to have wrong beliefs about my daughter and her disability. I believed what doctors had said, namely to just give her medication and injections, and keep her in a quiet and dark room. Now I know that I need to speak to my child, teach her to do things, do activities with her, do active exercises. She has progressed so much, and learnt to sit, move, understand and make signs to communicate. This means a mother has to be actively involved in the life of her child”.
During this training when Amina spoke to the Social Assistance workers, the head of their unit was also sitting in and listening. After he heard this mother speak up about her experiences, he was very encouraged, and said that it would be a good idea to organise a mothers’ seminar, in which other mothers of Children with Disabilities (CWD) would also hear this and learn from Amina. He was very positive about this idea, and we hope that this will be possible to organise soon.
Amina too is positive about this idea and says: “I want other mothers to hear how exercises and teaching your child through activities has so much benefit. I myself was in their situation and didn’t believe it was possible. I too had wrong ideas, and have gone through this experience myself, so I know what it is like, and I want to share this with other mothers. I hope that other mothers will accept this advice from me, because they will see that I have walked this road myself. Many mothers think they don’t have time, but maybe if I tell them that I too have four children, lots of housework, elderly relatives to care for, orchards, fields and cows to tend, they will see that it is possible. Yes, it has sometimes been a struggle for me, but if you don’t invest with patience, you will not see the fruit. I want them to see that you must spend time with your child. I didn’t use to speak to my child because I thought she didn’t understand. Now I speak to her daily, during daily activities, for example as we are harvesting the apricots in the orchard, my daughter is there with us, observing and listening to us and interacting with us”.
Amina has grown in the capacity to advocate for children with disabilities, to encourage other mothers, and now has grown in confidence to share her knowledge and experience with the social assistance workers too.