shalini kedia – The Metrognome

Have you heard about the FX Syndrome? It is caused by a genetic mutation and it affects several young boys.

by Ritika Bhandari Parekh

Every new born baby’s face is searched diligently for signs of its mother or father’s features. It could have its mother’s eyes or its father’s nose. But apart from these obvious physical attributes, how can one know if the genes responsible for that baby are normal or have gone haywire?

One major impact of this can be the genetic condition known as the Fragile X syndrome (FXS). FXS is caused by a gene mutation in the FMR1 gene, at the time of conception. The FMR1 gene is important for producing proteins that help in our brain’s development.

As the FMR1 gene is found in the X chromosome, it usually affects young boys and results in mental impairment, learning and communication disabilities. FXS is also a major cause of autism in children. Luckily in India, there is an organisation called the FX Society which helps to support families fighting the FXS.

41-year old Shalini N Kedia, chairperson of the Indian FX Society, started the organisation 11 years ago because of a personal experience. She says, “I realised that there is very little information about FX in our country. I wanted to do something about this.” Despite no medical background, she decided to accomplish three tasks for society.

“Our main role is to support the families which are already diagnosed with FXS. We give them accurate information and explain the dos and don’ts when dealing with the child. Since it is a genetic disorder, not everyone is acquainted with the science,” she explains.

“One of our major accomplishments is that we are very well networked all over the country today. So if your child tests positive, they are referred to us. And with our team of gynaecologists and paediatricians, we explain how something goes missing in the brain,” she adds.

Accompanying Shalini in her mission is 37-year old Ami Mehta Kothari, secretary of the FX Society. A trained multi-sensory educator, Ami has 10 years of experience in teaching special needs children. Ami says, “Our society also educates professionals in the country, because many children are not diagnosed because of ignorance. So we try to have seminars and workshops in educating people. Our third major task is to give women information so that they can take an informed decision when they opt for another child.”

Since there is no particular cure for FXS, the problems can be improved with various treatments. These treatments consist of special education, speech and language therapy, as also occupational and physical therapy.

The Fragile X Society is present all over the world, with the maximum research being done in the US. They have created reading and writing programmes for special needs children. “We have all the international level programmes, facilities and therapies available in the country. Last year, we facilitated the opening of Ummeed, a child development centre at Lower Parel. Thus, we can claim that any child who is diagnosed will get the best facility and treatment,” says Shalini.

But the crux of the matter is creating awareness. “The rate at which the syndrome is growing, we are definitely looking forward to take professional help of a PR firm in helping us reach more people,” Ami adds.

So if you know any child in your neighbourhood who has attention problems or is undergoing delayed development, help them reach out to the FX Society in India. Alternatively if your parent or grandparent is having balance or tremor-related problems, ask your doctor about Fragile X testing.

For more details, log on to http://www.fragilex.in or call 022 666 42151/+91-98201 99092.

(Featured image courtesy www.babycenter.in. Image is used for representational purpose only)

A South Mumbai-based programme teaches the value of companionship to special needs children and opens a new world for them.

by Ritika Bhandari Parekh

Mumbai is a bewildering city for a newcomer. But give yourself enough time to observe how it works, and you will notice that it has a heart. Entrepreneurs abound and initiatives flourish here because Mumbaikars care. One such initiative is Buddeez.

The ‘Buddeez’ programme was started four years ago in South Mumbai to offer friendship with a difference. Started by South Mumbai residents Ami Mehta Kothari and Shalini N Kedia, the programme pairs special needs children with normal ones, thus giving each a chance to enjoy the joyous moments of friendship.

What the programme is about

Children with special needs may include those with learning disabilities resulting in dyslexia, or those facing delayed developmental problems causing autism. For young children like them, it is a challenge to have a social outlet for playing or even to make friends. Ami, a trained multi-sensory educator says, “Working with special needs children over the years made me realise that they do not have any interaction with other people, except for their siblings or parents. . I cannot imagine life without having friends, so I felt we needed to do something about it.”

The programme consists of students who volunteer to spend a 45-minute to one-hour session doing activities with a special child. For this, they’ve tied up with BD Somani School, which gives their 11^th and 12^th grade students an opportunity to become friends with special children. The students also earn grades as a part of their CAS (Creativity, Action, Service) curriculum.

Ami says, “A certain sensitivity and maturity is needed to make the special child feel happy and important. 11^th and 12^th graders tend to be a little mature and so we have zeroed in on them.”

Shalini says, “We hold two sessions. The first orients the mainstream children with our programme and the special children. The second session is where we talk about the child that they have to be buddies with. So four or five mainstream children who volunteer will have one special child. They are told about the special child’s likes, dislikes, allergies, favourites, peculiar traits. We familiarise the volunteers with this information, so that it becomes easier for them to get his attention.”

The volunteers are friends with the special child for two academic years. From meeting at parks to playing kho-kho or saakli, Ami and Shalini try to incorporate different activities for different children. “Some like to meet at home or play board games, while others love to roam in malls or coffee shops. We encourage volunteers to do activities that these children love,” says Ami.

There is an adult accompanying the volunteers to monitor each session. So if the ‘buddeez’ make pasta for the child that doesn’t like loud noise, the adult keeps a check on both. Having four or five mainstream children is an advantage because some special kid may just want either boys or only girls to come. So this gives the supervisors the flexibility to adjust.

Success stories

Buddeez is slowly changing how people, especially their immediate family, looks at special children. Ami says, “There was an older special child and his normal younger sibling. The younger one would not play with the brother in the building compound. So one day, all these older boys from BD Somani came and gave him so much importance. They played ball with him and followed his instructions, which gave him a big boost. On the third day, the mother called and said the younger one took the older one down to play – all because the big guys had come and played with the elder child.”

Another incident had a non-responsive child, who for weeks would not play with his ‘buddeez’ group but simply ride his bike. The girls coming for the session were very disappointed with this. But after a few months when the girls were leaving, the child bid them goodbye saying, “See you next week.”

“Since the child was autistic, it was difficult for him to express what he felt. He loved the importance the girl ‘buddeez’ gave him,” reveals Ami.

Shalini adds, “In fact, we make a point to tell them at the orientation that some children will not respond, but don’t give up. They want you there, if they don’t want you, they will push you out.”

The project has the potential to sensitise school children and instill a sense of fulfillment and achievement in them. “They learn to think on their own,” explains Ami. “I remember when we took this child suffering from a lot of allergies and needed gluten-free and dairy-free food, to Priyadarshini Park at Nepeansea Road. He saw an ice-cream stall and demanded one. But the buddeez volunteers realised that he could not have the ice-cream because of his allergy. So one bright child comes up and says, ‘Oh! But he can have orange ice-cream.’ And so we went and got him an orange candy. It makes these children look out for solutions wherever possible.”

Volunteer to be a buddy

“We definitely need more volunteers,” says Shalini. ‘Buddeez’ is currently based only in South Mumbai. “We have special children from Bandra and Chembur who have approached us, but the lack of volunteers makes it difficult for us to go there,” Ami says.

Shalini says, “The attitude that friendship is a luxury for children with special needs, requires a change. It is a necessity, so instead of only working on their reading, writing, math and cross motor skills, we should make an effort to teach them friendship.”

If you wish to volunteer your child for ‘Buddeez’, you can contact Ami Mehta Kothari at +91 9820199092 or Shalini N Kedia at +91 9820028730.