When occupational therapist Vaishali Pai 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 and it was as if her destiny was set with this experience. 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 as her career progressed and Pai got deeply involved in pediatric neurology. To learn the latest developments in her field, she went off to the United States for a three-year programme in Early Intervention in Children with Special Needs and Family Intervention conducted by the University of California, Los Angeles, and then followed it up with a six-month training in Miami, Florida, in EMG Biofeedback, used to treat varied physical and emotional ailments, from anxiety to chronic back pain to cerebral palsy.
With enough knowledge under her belt, Pai came back and set up the paediatric rehabilitation programme at Vydehi Hospital in Bengaluru. At the same time, she finally 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, Pai set up the Tamahar Trust in 2009. Sanskrit for ‘Remover of Darkness’, Tamahar literally is just that. It prepares children with special needs to take on the challenges of the ‘normal’ world and carve their very own place in it.
Having started small, with one centre in Malleshwaram, where one-on-one sessions were held with children and parents in the afternoons, Tamahar currently runs three facilities – two in Karnataka (Malleshwaram and Hutti) and one in Rajasthan (Paldi) – where cutting edge treatment is offered to close to 100 children coming from different economic strata and suffering from a range of conditions, such as autism, cerebral palsy, chromosomal disorders, intellectual impairment and epileptic disorders, among various other syndromes and rare diseases. Most Tamahar students live within seven kilometres of a centre.
There are two programmes available – a pre-academic programme 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, neuro linguistic programmimg, 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 – there’s a developmental pediatrician, a neurologist, geneticist, psychiatrist, and psychologist on board. “Everyone collaborates to prepare an individualised programme for each child,” shares Pai.
Deepa Krishnamurthy conducts the Karnatic raga-based musical therapy sessions at Tamahar. “Our aim is not to teach them ragas but to stimulate their mind and help them vocalise through music,” she elaborates. Given their constraints only two to three of her students can actually repeat the words of a song. However, many start vocalising after a few sessions – though this may not always happen during class. Krishnamurthy recalls how one mother tearfully told her of the moment her eight-year-old child called her “Ma” for the very first time after spending a few months in music therapy. Essentially, melody helps the children calm down, which, in some cases, leads to improvement in hand-eye co-ordination as well. “Completely passive kids are rare. A child who seems unresponsive in class may suddenly start tapping at a taal (classical music note) on his/her lap at home,” she remarks.
According to Hamsa Priya, who has enrolled both her children into Tamahar, “The USP of their approach is that they employ multiple therapies and make sure that the mother is involved in the treatment.” Priya’s children – Aashrita, 8, and Ishaan, 5, have MPS 3A, a rare genetic condition that affects the brain and the spinal cord. She is especially grateful for the weekly counselling sessions at Tamahar where parents like her get to speak their mind and heart out to Saumya H.S., the visiting psychologist. “It is difficult to accept that your child has special needs,” says Priya, “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 dietary advice to how to overcome our own mental strains and lighten up.”
At Tamahar, the mother is recognised as the primary care-giver. Throughout the two-and-a-half hours that 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 Sudipta Shanbag, the yoga therapist at Tamahar.
Whereas dedicated yoga practice has made it possible for some children to learn to walk others do the Bhramari pranayam (producing a deep humming sound) to calm them down when they are agitated. Needless to say, the ‘asanas’ taught are modified to suit the children’s requirements. With soft music playing in the background and a lot of laughter in the air, the children challenge their bodies ever so slightly like trying to balance or move a limb. “Tamahar’s children participated in the Yoga Day event held in June this year at Cubbon Park. It was a happy, proud moment for us all,” declares Shanbag with immense pride.
In this way, Tamahar creates many opportunities for its students to integrate with the regular world. Besides participating in public events, the children enjoy outdoor activities every fortnight at a local park. Additionally, summer camps and sports camps are organised, where they get to play games like badminton or carrom with a little helping hand from their teachers. In fact, quite significantly, some of Tamahar’s students are training at the courts of The Canara Union Charitable Trust in Malleswaram.
The success stories are indeed heartwarming. Take for instance, Nitish Kudari, 11, who has 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 comes to school riding pillion with his mother on a modified scooter. He can indicate he is hungry and changes television channels with a remote. Then there is Sugi, who has Rett Syndrome (MECP2 gene disorder). When she came in at age two, she could not sit, use her hands, or communicate in any way. Two years on, she has better physical control and sits independently for a short duration. She communicates through facial expression, attempts to vocalise and shows tremendous social and emotional development.
Achievements like these spur Tamahar to make bigger plans for the future. These days, Pai is scouting for properties to set up new centres. Furthermore, pre-vocational training, life-skills programmes, and sports programmes for children with special needs are on the cards. In a knowledge sharing initiative, Tamahar has tied up with the Organisation for Rare Diseases India (ORDI) to develop a methodology for spotting rare diseases and design rehabilitation procedures.
“There is much to be done, but resources are always a constraint,” rues Pai. Finding trained staff is difficult, but finding rental space for the schools is even tougher. Monthly expenses are roughly around Rs 2.5 lakh of which only Rs 1.5 lakh comes in as fees (charges for each child depend on his parents’ means and their transport expenses). The rest is covered through donations from friends and family and sporadic CSR funds. “It really is a hand-to-mouth existence,” smiles Pai, “but we have always managed to find a way so far.” After all, it’s all for the kids.