Story of Shiva
Shiva is a bright 4 year old boy, living in Sanjay Colony in Okhla. He was born in a public facility in the state of Uttar Pradesh. The doctors at this public facility told the family that the child had infection and would not survive. She was advised to take the child to another hospital. His mother says “poora shareer neela pad gaya tha. Ye jab paida hua tha toh ganda paani chala gaya aur isko infection ho gaya tha” (His whole body turned blue. When he was born some dirty water went inside his body, because of which he got infected). The parents rushed the child to a private hospital in Varanasi, the closest city to their location. Here, the doctor there told the mother “bachha to bach jaega par dimaag ka halka hoga aur haath paer se nahi chalega” (the child will be able to survive but his brain would be affected and he will not be able to use his limbs)
Shiva has a condition known as Cerebral Palsy quadriplegia where all four limbs of his body have been affected. His development is delayed. The lack of information resulted in Shiva lying in the house the whole with little to support except for the great love and concern of his parents and extended family.
ASTHA’s work with Shiva started in January 2017 when he was 3 years old. During the surveys, a nearby anganwadi worker informed ASTHA’s field workers about Shiva. During the initial interaction, the community worker with many years of experience realized that Shiva’s limbs were very stiff. He was in the lying position the whole day and not communicating much. At the age of 3 Shiva was still being fed with pureed food and liquids. This certainly affected his development and nutrition levels. With counseling and support, Shiva’s parents were encouraged to dream once again for their child. A multi-disciplinary team of special educators, physiotherapists and social workers looked conducted an assessment along with the parents, trying to understand what Shiva’s abilities was and where he faced barriers. It was observed that Shiva had Cerebral Palsy, which was seriously affecting movement of his hands and legs. It seemed that he was not communicating as well. Knowing that many of his abilities would unfold as we get to know the child more, the team did not make a judgement. Instead, the team tried to focus on some crucial elements that would enable Shiva’s development. During the initial weekly home visits by the ASTHA community workers, it was observed that the urgent need was to address Shiva’s posture. His mother was informed about how Shiva can sit with adequate support. This one change in posture enabled many other developments for Shiva. Suddenly, he could see much more
A suitable chair and Ankle Foot Orthosis (AFO) were arranged for enhancing Shiva’s movement. AFOs are used to support the ankles to improve the position and their movements. In the subsequent home visits, focus was laid on feeding practices and increasing the basket of choice for his consumption. It was because of the tightness in his limbs and face, Shiva faced difficulties in chewing and eating. Not knowing what to do and whether their child could eat solid foods, the parents kept giving him pureed food and liquids. Nobody had advised them otherwise. Such a practice is a clear precursor of malnourishment in children.
Different consistencies of food were slowly introduced and Shiva started accepting rotis and other solid foods. It was discussed with the mother how Shiva should be fed only in his sitting posture. By improving the range of edibles, it is made sure that the child is getting a nutritious diet. The parents were told how Shiva should be given choice of what he likes by continuously asking him. Activities with Shiva revealed he was very intelligent and would identify names of fruits and vegetables, identify colors etc. He was then 3 years old. His physical challenges masked his intelligence, making people feel that Shiva could not communicate. But with a little encouragement and understanding he started communicating a ‘Yes’ and a ‘No’ not with words but by the movement of his neck.
As the family continuously interacted with the child, he has started speaking some words. As he spends most of the time with his father, the first word the he said was dada (meaning grandfather in hindi). It is expected that as the family continues to work with the child and receive support from various quarters, Shiva will be able to communicate more, in myriad ways. Shiva’s family has bought about another positive change in him – his communication. With his increased abilities of sitting now, he also chooses what to eat now and tries to communicate, breaking the cycle of isolation that had narrowed his world. This isolation was further broken with Shiva joining the inclusive activities conducted by ASTHA with group of children within the community.