So when Shefali arrived at our Early Intervention Centre in Dehradun, India, with her four babies, we were amazed that only one of them had difficulties. Lakshi was the smallest of the four and the last one born. The ultrasound had detected three children, so her arrival was a surprise no one was prepared for. A month premature, she weighed well under a kilo at birth and she didn’t cry immediately.
Any one of those facts - multiple birth, premature, low birth weight, delayed birth cry - should have prompted the obstetrician or the pediatrician to advise the mom to visit an Early Intervention Centre, but in India, such advice is rare. Lakshi was over seven months old before her mother started worrying about her development and nearly a year before she learned of our existence.
Our pediatrician diagnosed Cerebral Palsy with associated developmental delay and Lakshi was enrolled in our intensive mother-and-child program whose goal is each child’s holistic development. An inter-disciplinary approach ensures that children learn social skills while doing physiotherapy and language development while working on fine-motor skills. Every activity we do with the children has a purpose, though all the children know is that they are having fun.
Shefali was a poster-mother. Her energy and commitment to Lakshi’s growth was an example and an inspiration to both the other parents and to the staff. Nobody in the EIC had anything like the demands on their time that four babies of the same age presented, yet Shefali never seemed tired or cross or impatient. Other mothers sought her out for advice and direction - another carefully nurtured feature of the EIC’s approach. Mothers Support Groups are an invaluable resource, especially for new moms just setting out on the adventure of raising a child with special needs.
And Lakshi’s improvement - slow, but steady - was also inspiring. Other mothers looked at her and found hope for their own children. By the time she graduated from the EIC at age 6, Lakshi was walking with the help of a rollator, speaking in short sentences and more than eager to join a mainstream school like her brother and two sisters.
Finding that mainstream school has been the challenge. The one her siblings attend pleaded an inaccessible environment for a child with physical difficulties. The one she finally enrolled in refused to allow her to participate in any activities outside of her classroom because that would involve someone helping her to move. When her parents learned that she was being left alone in the class, with no light and no fan, they withdrew her.
Attending Latika Vihar - our inclusive neighborhood children’s centre - gives Lakshi the chance to be with other children who accept her for who she is. The fun of being with other kids, enjoying normal activities like art and craft, music, pottery and games has bolstered her self-confidence and restored her self-esteem. That’s important, because her mainstream education experience is still an uphill struggle.
Now she’s has joined a high-end government school meant for children of government officers (her father is one). Legally, the school cannot refuse her admission, a fact which the headmistress refers to over and over, making it clear that if she had her way, they would never have taken her.
Early Intervention is only the beginning of a long, exciting journey to change a society which is afraid of differences. We are hard at work trying to win over the teachers and the management of that government school, trying to create a place for Lakshi which is hers by right, trying to build an inclusive world, step by step, by little and by little.
Photo Credit: Muir Adams