JOIN USDifferent strokes for special folks
Bengaluru-based Hamsa Priya is a spirited mother of two, who has taken it upon herself to prepare her children for the tough life ahead. Hamsa’s children have MPS 3A, a rare genetic condition that affects the brain and the spinal cord.
Till a few years ago, understanding their particular needs was proving to be a real tough task. But today, she is happy that she is not bearing this responsibility all by herself. Indeed, at the rehabilitation centres run by Tamahar Trust, the brainchild of occupational therapist Vaishali Pai, nearly 100 children with conditions like autism, cerebral palsy, chromosomal disorders, intellectual impairment and epileptic disorders, among other syndromes and rare diseases, are receiving specialised care and therapy while their families are sensitised and counselled to deal with their differently-abled offspring.
When Vaishali moved to Bengaluru after marriage, she took up a job with the Spastic Society of India. This was the first time she was working with children with brain
damage. Commuting for an hour from Malleshwaram to Indiranagar everyday for work, she often wondered, “If this journey is so difficult for me, how do my patients, some of whom live even further, manage to get there by public transport? Shouldn’t they have facilities closer to their homes?” This concern stayed with her and Vaishali got deeply involved in paediatric neurology.
To learn the latest developments in her field, she enrolled for the Early Intervention in Children with Special Needs and Family Intervention programme conducted by the University of California, Los Angeles. She then followed this up with a six-month training in Miami, Florida in EMG Biofeedback, which is used to treat varied physical and emotional ailments. With enough knowledge under her belt, Vaishali set up the paediatric rehabilitation programme at Vydehi Hospital in Bengaluru.
Bringing in lightAt the same time, she got down to doing something she had always wanted — making quality treatment and easy access to affordable rehabilitation facilities
available to special children and their families. As a first step, Vaishali set up Tamahar Trust in 2009. Sanskrit for ‘remover of darkness’, Tamahar prepares children with special needs to take on the challenges of the ‘normal’ world and carve their very own place. Having started small, with a centre in Malleshwaram, where one-on-one sessions were held with children and parents in the afternoons, Tamahar currently runs facilities in Karnataka and Rajasthan where cutting-edge treatment is offered to children from different economic strata.
There are two programmes available — a pre-academic and a functional academics programme. The latter is for those whose developmental milestones are equal to that of a five-year-old or more. Apart from physical therapy, neurolinguistic programming, kineseiotaping and manual muscle work alternate methods such as yoga, art and music are also used. And guiding and monitoring this rehabilitation process is a team of committed doctors and professionals.
According to Hamsa, “The USP of their approach is that they employ multiple therapies and make sure that the mother is involved in the treatment.” She is especially grateful for the weekly hour-long counselling sessions where parents like her speak their mind and heart out to Sowmya H S, the visiting psychologist. “It is difficult to accept that your child has special needs,” says Hamsa, “so, sharing such thoughts and concerns with the other mothers helps form a natural support group. We have been taught everything from how to handle a child’s moods to how to overcome our own mental strains.”
At Tamahar, the mother is recognised as the primary caregiver. Throughout the time the child spends in school, she is around as a participant and an observer. “Children who follow up on their treatments at home with the assistance of their mother show better signs of progress,” points out Sudeepta Shanbhag, who is associated with Tamahar as a yoga therapist. The yoga programme is conducted by Prafull Oorja Charitable Foundation, which works with children with special needs in Bengaluru. The 45 minute-long yoga therapy sessions are held twice a week and the children are divided into groups of five or six depending on their ability and age. The asanas taught are modified to suit the children’s requirements. Remarkably, the kids participated in a Yoga Day event at Cubbon Park last year, which is one way for them to integrate into the mainstream.
Besides participating in public events, they enjoy other outdoor activities as well, including summer camps and sports camps where they get to play games like badminton with a little helping hand from their teachers. The success stories are indeed heartwarming. Take Nitish Kudari, who turned a corner after four-and-a-half years at Tamahar. Diagnosed with cerebral palsy, he could not even sit on his own at the age of six. Today, he walks a little and can indicate he is hungry and changes television channels with a remote.
Achievements like these spur Vaishali to make bigger plans for the future. Besides looking to set up additional centres, Vaishali is keen on expanding the programmes
being offered. “There is much to be done, but resources are always a constraint,” rues Vaishali. While the monthly expenses come in as fees (charges for each child depend on the parents’ means), the difference is covered through donations and sporadic CSR funds. “It really is a hand-to-mouth existence,” smiles Vaishali, “but we have
always managed to find a way so far.” After all, it’s all for the kids.