Vicky, 19, is autistic. He can't speak and needs to be monitored constantly as he is prone to occasional epileptic seizures. But he's not the only one in the family who requires help. His parents, Anilkumar Raman and Bobby - who also have a daughter, Jhilika, 12 - need support in the form of comparing notes on Vicky's progress with other parents in similar situations and keeping abreast of developments in the field of dealing with autism. Interacting with other parents of special-needs children also makes them realise they are not alone.
"The pressure is so great it's a wonder families [of children with special needs] stay together over a period of time," a tired-looking Anil said after staying up most of the night before taking care of Vicky, who had had a seizure and fallen, resulting in a deep gash on his forehead that had needed seven stitches.
Vicky's family is just one of many with similar concerns. "I know exactly what a parent of a special-needs child goes through," says Gulshan Kavarana, who has made it her life's mission to help children with special needs after her younger daughter Zara was diagnosed with autism. Kavarana now heads the Special Families Support (SFS) Group, which was founded in 1999. Through SFS, Kavarana has helped hundreds of other families cope with their special-needs children by inspiring, coaching and motivating parents. SFS holds several public events each year, organising fashion shows, dance performances and parties designed to integrate families and individuals with special needs.
"As a mother of a child with special needs, I can say that learning to raise a child with a disability can be a daunting task," she says. Parents have to deal with their own guilt-based emotions, everyday struggles and societal pressures that come along with this unexpected responsibility. "To go through it alone can be overwhelming. We want to bring up our children with strength and dignity, but from where do we find the courage to go on? I looked around for parents who were in a similar situation as I was in, just so we could share our experiences and lend moral support to each other. But I did not find any support group at that time. Out of love for my child and a willingness to understand and cope with her condition, the SFS group was born."
Over the years, SFS has grown to include more than a hundred families from across the emirates who come together to take part in its activities.
Similar concerns
Safia Bari, who runs the non-profit Special Needs Families (SNF) - which has its own has its own training centre, the Special Needs Future Development Centre - has a similar tale to relate. This mother of three has an autistic daughter in her twenties. It took Bari a long time to come to terms with her daughter's problems. "I didn't really accept the fact that Nusrat was different until she was almost eight," she admits. "I knew nothing about special needs, so when she was slow compared to her peers, I told myself it was because she was my first baby and she'd been pampered too much - even though I was a trained teacher."
After the acceptance came a dark period, when Bari blamed herself and searched frantically for answers. "It was difficult - and when I look back, I remember closing myself off from other parents as I was feeling so low. Nusrat was nine by then and a pupil at Al Noor Centre for Special Needs."
A chance encounter with another parent changed her life. She explains that she met a woman at her daughter's school who had twins with special needs more difficult to manage than Nusrat's. Bari explains "she appeared so happy that I was ashamed of myself. I thought of the saying ‘I wept because I had no shoes until I met a man who had no feet'. How true!"
Meeting that woman changed her life. Bari became actively involved in Al Noor's volunteer programme, held weekend open-house days for other parents and their special-needs kids, and conducted a summer camp from her living room for children who couldn't to go on holiday in summer.
About 12 years ago, she established the SNF support group. From just two families, SNF today has more than 150 families who are members of the group, a database of facilities available in the UAE for special-needs children, medical specialists who offer their services pro bono, a fund-raising division, a volunteer programme and a very full social calendar.
The SNF Children Development Centrein Karama was the next step. It opened in2006 and provides a safe haven for students whose parents have been unable to get their children a place in one of Dubai's special-needs schools. "We do a lot of events, arranging desert safaris, cruises, parties, picnics for our members... things parents can't normally afford to do by themselves.
"Having a special-needs kid is a challenge, and all the more so if the child has behavioural issues. The first time I organised a get-together of 350 people at a park, I remember there was this mother who was crying as we wound up," Bari says. "The reason was that although she had been in the UAE for five years, every time she had brought her child to the park, she had to turn back from the gates because of the attention her family attracted due to her son's behaviour. ‘Today I am not bothered even if a thousand people are staring at him. I am not the only one now', she said."
United front
Vicky's father, Raman, who is a member of the executive committee of Society for Advocacy & Awareness Towards Holistic Inclusion (Saathi), explains how this umbrella organisation came into existence. "We used to frequent [other] programmes and during one such meeting decided to make a representation to the Consul General of India [about forming an umbrella organisation of NGOs]. I sent an email to the then Consul General Venu Rajamoney, and he recommended we speak to his wife, Saroj Thapa, who was a professor at the Zayed University, training teachers for special-needs children," he says. That was the first step towards the formation of Saathi.
At the same time N Mohan, president of an NGO called Friends of India, was also in touch with Thapa while organising workshops in Dubai. He too had a similar idea, and along with K Kumar, convenor of ICWC (Indian Community Welfare Committee), VS Suresh of another NGO, Genesis, and Thapa, met with Kavarana, Bari and Raman to draw up a charter of what the organisation would do. "We met together many times with parents and the consulate officials to understand what issues had to be addressed," says Mohan.
"We felt that advocacy was one of the main areas. Also, there was a consensus that it would be better if there was one voice, a team under one umbrella," says Kumar, who has won several awards for his social work including one given in his home country India last year for his leadership in community service. He says they had a brainstorming session "and based on the feedback we received from parents after many rounds of meetings, drew up our objectives and launched Saathi on June 12, 2009."
"One of my objectives in working with Saathi was to look for practical solutions to the problems of parents of special-needs children such as exploring with the RTA the issue of special parking passes for such families," says Raman.
"The RTA has been extremely open [about issuing parking stickers to parents with special-needs children] but there are other problems involved. To get a parking sticker I have to get a certificate issued by a government hospital that says my son is autistic. This is quite tricky as autism is neither a physiological problem, nor a mental issue or a birth defect like cerebral palsy, so a general physician would be reluctant to issue a certificate. Autism was included into the eligible category for a disabled parking sticker very recently. I feel Dubai has done very well to include it in the list."
The RTA now also allows special-needs children to use the metro free of charge.
Raman and Bobby were sure that bringing other like-minded NGOs under one umbrella would help all those involved with special-needs children.
Constructive programmes
The committee designed an activity called Saathi Manthan (a get-together to bounce around ideas) which happens every third Friday at the Indian Consulate. "We invite experts in the field from different areas like autism or cerebral palsy, and so on," says Kumar. "That has been a big success, and we also give an opportunity to parents to share their experiences for the benefit of other parents."
A Saathi Manzil (a sort of annual general meeting) is held every year.
"Another key area of Saathi's activities is the children-for-children inclusion programme where about 35 to 40 children with special needs mix with about 90 children from mainstream schools. This happens every second and fourth Saturday, at the Modern High School in Dubai and at Delhi Public School in Sharjah respectively. "This is a defined programme of about 5 to 6 hours where special-needs children get the opportunity to interact with children from mainstream schools; and the latter, too, learn to take responsibility for such children and friendships develop between them," explains Kumar. "There has been a lot of positive feedback and at any time 35 special-needs students and their parents participate. Now we are expanding this activity to many other schools." Mohan adds, "We have had discussions with The Millennium School which has a buddy programme. They have requested that children from Saathi join them."
Creating a two-way learning process
Saathi also organises workshops for mainstream school teachers to create awareness about various aspects of taking care of special-needs children. "These workshops are conducted by professionals in the field, and this helps us in pursuing our objective of advocacy," says Kumar. "We have also been able to get some concessions and support - such as carrying wheelchairs and getting help when they check in - for these children with certain airlines like Air India. We are also exploring the possibility with the RTA for parking passes to be given to parents of such children. We have had a couple of discussions with the CEO of RTA and his reaction has been positive."
Kumar and his team have also had meetings with the Community Development Authority of Dubai (CDA), which runs a child development centre. "The centre is well equipped to address the needs of Emirati children," says Kumar. "The CDA is highly impressed with Saathi's work as most of the things they plan to implement are already being attempted by us," says Mohan. Kumar adds, "They have also agreed in principle to support our activities. We will be signing our memorandum of understanding to conduct joint activity which will allow children from other communities to benefit from the schemes that are at present only available for Emirati children."
Professionals working with organisations such as the Dubai Autism Centre and Al Noor School for Special Needs and Rashid Paediatric Centre are also a part of Saathi's core group. "We are in the process of developing a website, updating the latest information available so that parents [of children with special needs] arriving in Dubai will have a comprehensive list of other help available, and also a databank of resources to help them," says Kumar.
The wife of the Consulate General is the designated patron of Saathi. So when Rajamoney's term ended and his successor, Sanjay Verma, took over, Verma's wife, Sangeeta Matta-Verma, was inducted into Saathi. Says Verma: "This is a subject that's close to my heart because I am an educator and have specialised in teaching children with special needs. That's why I had no hesitation in taking over."
In the 15 months Verma has been active in Saathi she has seen it grow by "leaps and bounds". "It's a good networking platform for all the organisations that participate. It has managed to live up to what its founders had expected, and what I too envisaged, maybe more. It has taken off."
"Saathi is a great idea, it helps us do much more of what we have been doing," says Kavarana. "The families now have more options - I would do an outing a month perhaps ora workshop once in two or three months. Genesis, another NGO, also does workshops so we forward the information to our members…. Since all of us are part of Saathi, parents now have more opportunities in all fields."
Inside info:
Contact Saathi at www.saathidubai.org /050 7704743.
