Seven year old, visually impaired Upendra Bahadur Singh, from Kailali in Dhangadi, was admitted at the Rehabilitation Unit (Enabling Centre) at BPEF’s Children’s Hospital for Eyes ENT and Rehabilitation Services(CHEERS) on 16 June 2016. The third child of Janak Bahadur Singh and Laxshmi Devi Singh, unfortunately was an unhealthy new born, who developed pneumonia within three weeks of his birth. While being treated at the hospital in Dhangadi, his vision gradually started to deteriorate but his parents however were unaware that he had lost his vision more or less completely.
As Upendra grew older, he was unable to see and would keep banging his head against the walls when he walked around. To add to this, he had limited mobility and unclear speech. Usually parents of children with blindness and visual impairment (CWBVI) or other disabilities are ignorant and do not have knowledge on availability of programmes and services available for such children. This is the foremost challenge in early intervention. In Upendra’s case too his parents’ lack of awareness on additional learning opportunities and specialized services such as rehabilitation, delayed the process of early intervention. It was very frustrating and discouraging for the boy’s family members when they tried to get him admitted to school when he was 5 years as all the local schools refused to admit a visually impaired child. This is another critical limitation to early intervention. However, with BPEF-CHEERS’s initiative to inform various educational institutions about availability of training and education of such children at their premises with promising results, teachers at the local schools have now started referring children with disabilities to the Enabling Center. One such example was when the resource teacher, Rupa Rai from Panchodaya Madhyamilk Vidhyalaya, Dhangadi referred Upendra and his parents to CHEERS.
Early childhood intervention involves earliest possible support to children. This can be as early as from the time of birth, soon after the child is discovered to have no vision. The earlier the intervention is started, better is the outcome for the child and the family. The critical missing link here is a lack of awareness of the need and lack of information about availability of such services among family members, the community as well as eye care personnel.
Eventually Upendra joined the Enabling Centre, after a thorough eyes and ENT examination. His mother was asked to spend six days at the hostel facility at CHEERS, to provide information to the team members of the Enabling Center about Upendra’s performance and activities at home. This helps the team develop a tailor made plan for the child building on existing capacity as no two children are the same in terms of their existing ability and capacity to learn. While at the enabling center the mothers also get an opportunity to observe how other children are doing and also interact with other parents sharing their personal experiences. They undergo week long training on taking care of the child at home as well. At this time Upendra’s behavior was a source of immense worry and great concern for his parents. His speech was unclear, he was unable to use his left hand and fingers, and had difficulty walking and sitting down. He always had his fingers in his mouth and drooled. Besides, he never listened to anyone, got angry easily and did not know how to eat properly or use the toilet.
Since he was unable (like other blind children) to get the information through sight, various methods and strategies to get him to gather information for his learning, growth and development(both emotional and social) was used by the trained staff of special educators and helpers. For a child with visual impairment, touch, hearing or residual vision is critical for learning and development. With the support of trained and knowledgeable professionals at CHEERS Upendra was provided support to develop these senses to his optimal ability.
During his training at CHEERS, Upendra picked up some fine motor skills. He learnt how to use the tricycle as a result of which he was compelled to use his left hand which he could not use earlier.
Playing with mud, inserting weeds into pinholes, carrying weight and making a garland from weeds were some of the other fine motor skills he was taught. This helped him move his fingers and hands and stop him from putting his fingers into his mouth. He was gently persuaded into participating in activities that he enjoyed such as riding the tricycle, playing with his friends and the physiotherapy ball. However he did not like to be around people he disliked.
Under the guidance of the staff Upendra picked up skills needed for activities of daily living. He learnt how to move around in a safe manner, eat properly without spilling food, finish his food on time, close the door while using the toilet, remove clothes and put them on after using the toilet and pour water after using it. He could soon walk confidently to the toilet, and wash his hands with soap and water. These are very important milestones for a child with disability/disabilities and helps immensely in boosting their self confidence. Drooling and taking his fingers to the mouth had reduced considerably. He could even answer questions in a coherent manner.
The excellent training churned out at CHEERS has turned Upendra into a confident child. He now plays with friends, has acquired several life skills and is able to perform activities of daily living independently. After spending six months at CHEERS he graduated in January 2017 and was referred to Panchodaya Madhyamilk Vidhyalaya, Dhangadi. Although the school refused to take him, he was later admitted to another school Mangal Prasad Uccha Madhyamik Vidhyalaya in Nepalgunj. The temporarily shattered confidence of his parents following refusal at the earlier school, sky-rocketed and their happiness knew no bounds when they saw him join school after his training at CHEERS and they left him hiding their tears from him.
He is presently studying at Nepal Higher Secondary School in Bardiya and doing well. Upendra hopes to become a teacher in the future- a hope that is shared by his parents too. It is also encouraging to know that so far out of the 125 CWBVI who have been enrolled at Enabling Center for training, 90 children have graduated and enrolled in Early Childhood Development Centers(ECDCs) with only a few dropping out.