In the 1980’s as a single woman working in a teacher training institute, I always felt connected to the Down syndrome children who attended classes in the level below ours. In 1983 God blessed me with Nusrat my first baby – beautiful, cherubic and cheerful. She is a special child with different needs.
For 14 years we were walking in and out of hospitals doing tests after tests. Even today Nusrat’s condition is medically undiagnosed. Eventually I was requested to move Nusrat into a special school due to her inability to keep up with the other students. I was way too heartbroken and devastated thinking about Nusrat. The only thought that crossed my mind was ‘Why me’? For a few years I had completely withdrawn into a shell and hardly socialised with anybody.
After Nusrat I was blessed with two more daughters who attended regular school. One day it hit me that I would always attend my other daughter’s sports day but had never attended Nusrat’s sports day in the first two years of her being in a special school. I was engulfed with guilt and decided to go for her sports day. At the venue I looked around me and saw children who were wheelchair-bound, children who could not move voluntarily and children who threw tantrums. While taking in this sight I saw a mother who had twins and both of them were special needs children – one was on a wheel chair and the other child was like my daughter. I saw her smiling and enjoying herself. I had a moment of epiphany which changed my life forever. I thought to myself if this mother could smile through her struggles what was stopping me? That mother with twin special needs children, Sandhya Perera, went on to become my first friend in the UAE. Together we took nascent steps that set the stage for the Special Needs Families Support Group and the Special Needs Future Development Center.
Parents with regular children would never think twice before heading out to the supermarket. However, with a special needs child any outing requires planning and assistance. Sandhya and I formed a support group for the families of special needs children. The support group volunteers were a life saver for mothers who needed help with their kids while doing groceries or during doctor visits.
Mother’s pay a heavy price as primary caregivers to their special needs children as the back breaking work they do takes a toll on their health. As a relief for both mothers and their children I started summer camps in my living room. We would play music, create art and craft and wind up by sharing sandwiches. We also arranged Christmas parties, family outings to water parks, snow parks or movies so that the children and their families could bond and make memories of a lifetime. These family outings helped break the ice between many siblings who did not share a close bond till that time. As a parent of a special needs child it is hard to explain but there is an unspoken barrier that exists in society where these children are not readily accepted, welcomed or cherished.
While we were having a good time through the support group Sandhya and I realised that we had not addressed a key issue that kept raising its head when we interacted with parents of special needs children. Most special needs children were enamoured by their siblings who carried books and bags and water bottles to school and went to a bus stop where they made friends. They craved for an experience where they could go somewhere, do something productive and make friends. My only motivation was to give these children a sense of purpose and individuality.
We had heard horror stories of young adults who completed their initial education at special schools but had nothing to do and nowhere to go after that. Children were growing obese, some were battling depression and their sensory faculties were deteriorating due to lack of any mental stimulation. The mainstream world had nothing to offer these children. I had made up my mind to create a space where special needs children could work towards becoming self-reliant, self-sufficient individuals who may become a part of mainstream society someday. The Special Needs Future Development Center came into being to protect young adults with special needs and give them a chance to become ‘somebody’ in a world that had written them off as a ‘nobody’.
The hurdles to start this space exclusively for young adults with special needs have been countless, but each time a door closed, I looked at the potential these children had and worked even harder to provide them what they truly deserved. Many real estate companies refused to give me a space as they were apprehensive about special needs children being in the building. Eventually we started out with a few rooms in Karama Center. We formulated customised training and education plans through the Daily Living Skills, Social Skills and Communication departments to enable each of our students with essential life skills and basic knowledge that would guide them in finding a foothold in life.
Once we cross this hurdle we nurture their functional skills and intellect through the Functional Department and the Computer Department. Some of our students have developed competitive IT skills which have opened avenues in regular workplaces for them. Our in house production unit churns out pieces of art and handmade artefacts which are sold at corporate bazaars. In our efforts to enable them with effective work skills, we teach students basic office documentation work like photocopying, laminating, binding etc. Each day children in SNF move one step ahead towards self-sufficiency. Our goal is to be the stepping stone for these children to attain financial independence.
It gives me immense pride that children from SNF who were petrified to even cross roads without assistance are today working fulltime jobs and travelling long distances within the UAE. Many of our students have been absorbed by leading businesses in the UAE. They are financially independent and are carving a niche for themselves in the corporate sector. To me every special needs child is a success story but those who cinch financial independence are a beacon of hope to special needs children and their parents.
Agatha Christie has famously said, ‘A mother’s love for her child is like nothing else in the world. It knows no law, no pity; it dares all things and crushes down remorselessly all that stands in its path.’ The Special Needs Foundation was born because two mothers chose to believe in their children’s potential and provide them with opportunities that were usually denied to them because of their special needs. Sandhya and I were two mothers helping other parents navigate through the rough waters of raising special needs children. Today we have built a community where we empathise and encourage each other to look beyond limitations and do our best. It is not a smooth sailing journey, some days our finances are strained, other days not many opportunities come our way but nothing is more gratifying than the sight of special needs children feeling accomplished, accepted and acknowledged by their peers, teachers, employers, family, friends or the community. My journey began as Nusrat’s mother but today I have 60 more children who need me to be their guiding force and for this opportunity I am humbled and grateful.