Rashid is a 12 years old boy from Ganja. He is suffering from Cerebral Palsy. His mother has to look after him and his brother by herself, as she does not receive any support from her former husband. She was thinking about giving Rashid to a state care institution, so she could go to work. Luckily, she was reached by the UAFA’s gate-keeping team that identified the most urgent needs of the family. One of the biggest issues was the lack of any financial income, therefore UAFA provided her with a sewing machine. This way, Rashid’s mum could work from home and look after her children at the same time. In addition, she became more aware about the services available to children like her son. Today they come to the CBR centre regularly. Rashid’s mother became actively involved in Parents Union and Rashid is developing very well.
Emil is 22 years old. He was placed in Saray institution when he was only 3 years old. His parents divorced when he was just a baby and his grandmother could not look after him due to his condition, cerebral palsy. He spent there 19 years of his life.
He is a very bright boy. One of UAFA’s workers have developed a relationship with Emil and found out that when he was about 14 his grandfather together with his aunt and uncle visited him at the institution. She decided to find out who the boy’s father was. Then she contacted him. Both the father and his second wife were happy to welcome Emil into their home. However, they were worried that they would not be able to provide appropriate conditions for him, as they did not have a spare room and the only bathroom they had was outdoors. In order to take a good care of the boy, they needed an additional room with a bathroom. Emil’s family only asked for help with the building materials, not with the workmanship. Therefore, UAFA provided the materials and the family built the extension to the house themselves. Additionally, the International Women’s Club presented Emil with a wheelchair. Today, after so many years on his own, Emil lives with his father, loving step-mother and step-brothers. They have very good relations and Emil is a happier person.
Narmin is a child with a speech disorder. Her condition used to worry her parents as it caused some difficulties in her pre-school education. Therefore, they took her to the polyclinic, where they were informed about the work of UAFA. At UAFA’s centre Narmin was assessed and an improvement plan was prepared for her speech skills. Narmin’s parents participated in group sessions on speech issues where they were instructed about the necessary actions. As a result of appropriate speech therapy Narmin’s pronunciation has improved and stuttering has decreased. Today, her speech problems do not have a significant impact on her learning skills. Narmin’s parents are very grateful to UAFA for enabling their daughter to develop her full abilities.
Aylin, Nuray and Murad
Sometimes, disability may affect more than one child in a family. It then becomes very hard for parents to maintain appropriate development of their children. This was the case for Aylin, Nuray and Murad. Aylin is over 11 years old and she has equinovarus defect, which means that her feet are deformed and it makes walking difficult for her. Nuray is 16 and she has a cognitive problems. She cannot perform basic self-care activities. For example, she is not able to dress herself, button up her clothes or to put her shoes on. None of the girls had been involved in education until the family was approached by UAFA workers. Murad is the youngest child. He is 6 years old and suffering from cerebral palsy. He used to spend most of his day lying in bed, even when he was being fed by his mother. Children did not take part in any social activities.
The family lives in very poor conditions in a dark and damp one-room house. Mother is unemployed and father works as a temporary hired worker. Therefore there is a lack of stable income.
The family was reached by UAFA’s worker, who brought Aylin and Nuray into sessions in one of UAFA’s centres. Soon children’s development began to improve. This motivated the mother to engage more actively. Now, she uses the equipment borrowed from the centre at home, in order to further stimulate the development of her children. Children are very active in the sessions. Older children began to go to school. UAFA has also convinced the mother to bring her youngest child to the sessions. Murad appears to be very happy and tries to engage in all of his tasks. Additionally, UAFA bought a special chair for Murad, so now he can play and be fed in a seated position. It gives him more opportunity to learn about the world around him.
Today, the family is very grateful for UAFA’s support. That is why it is so important to reach out to families like this, who are not aware of the support available to them.
Ali is an 8 years old boy with disability. In August 2005 he was brought to Mingachevir Child Neurological Sanatorium by his mother. The mother was struggling to take care of Ali and earn a living at the same time. She did not have any support from Ali’s father, as he left the family when he found out about his sons disability. The mother felt that her only option was to give Ali into a sanatorium.
Carers at the sanatorium tried to explain to Ali’s mother that the child’s condition would worsen at the institution, as they could not offer him the same amount of care as she could. But she did not change her mind and promised that she would visit him regularly.
Months went by and Ali’s mother did not visit him. Nobody knew her address so they could not contact her. Ali’s condition was deteriorating every day. The carers were not able to make any improvement in his development. He did not want to eat and became weaker. He developed a bad cough.
However, with the help of the Community-Based Rehabilitation Centre workers, the sanatorium carers managed to find Ali’s relatives. They called his aunt and told her about Ali’s situation. She decided to take him for treatment to a hospital in Baku. Afterwards, Ali’s mother agreed to take him back home. Now Ali lives with his mother and his condition has improved. His development is being monitored by the CBR Centre staff.
Huseyn is 2 years old and has Down’s syndrome. He is a very sweet boy. We found out about Huseyn when Community-Based Rehabilitation Center workers provided training at the central hospital in Goranboy. When we first saw him, he was very weak, he did not react to any noise and he made no eye contact with anyone. He only reacted to his mother and grandmother. He would always react with tears when seeing strangers.
His motor skills were not developed and he could not roll, crawl or sit, despite his age. His mother carried him in her arms all day long. His family did not believe in any possible improvements to his development. The family was very traditional and his mother did not have a say within the family. All decisions were made by her husband and mother in law.
During our first visit, Huseyn’s mother and grandmother were very cold towards us. We introduced the work of our organization and explained the purpose of our visit. However they remained hostile. They seemed to be only interested in their son’s ability to get married. We tried to convince them that Huseyn’s development should be of their main concern, otherwise his condition may worsen. They did not want anybody to know about their child’s disability. They labeled him as an “ill child”. Huseyn’s grandmother expressed a clear opposition to our involvement: “What do you expect from this ill child? Don’t disturb him. I don’t want my grandson to be known in Goranboy. I can not allow my daughter in law to come to your center with Huseyn”. The main problem was Huseyn’s father’s attitude towards his son. He did not want anyone to know about his problems, so he kept his son in the house.
We visited Huseyn once a week and conducted individual sessions with him. The family opposed our visits as they did not believe in any possibility for improvement in Huseyn’s development. However, after some period of time the boy began to improve and his mother became more interested in our work. CBR Centre workers gave her a program of Huseyn’s development and taught her how to work with him by herself.
Huseyn’s gross and fine motors became well developed. He can now roll and crawl. He smiles when somebody plays and speaks with him. He is eager to play with his sister. However, to improve further he would need to attend sessions at the CBR Centre. Huseyn’s mother was interested in taking him to the center but the father did not allow them to go. We asked his mother to come to the center together with her husband, but she explained that he works all day long and has no time. We decided to visit Huseyn’s father at his workplace.
When we arrived, he tried to avoid us. Nevertheless, we introduced ourselves and our work, and tried to explain its positive influence on Huseyn’s condition. He did not want to listen and asked us to leave. However, we visited him three more times and our persistency paid off, because he started to show interest in our work.
We continued visiting Huseyn’s family and holding therapy sessions with him. Huseyn’s mother became more and more engaged as she could see her son’s progress. After some time, she has managed to convince her husband to sent Huseyn to CBR Centre. Now, Huseyn and his sister are regular visitors in our center.
This case is a major success for us. We were able to make progress in Huseyn’s development and to change his family’s attitude. They realized that he is not “ill”, but a child that needs special attention and care. Now we look forward to further progress in Huseyn’s development.