“The joy on Asad's face as he looked at his gold medal was that of pride and accomplishment,” says Samina Jiwani, speaking of her son's recent win at the Special Olympics in Illinois. “As a parent, it was a true moment of happiness – I had tears rolling down my cheeks.”
It was no ordinary victory.
The prize was the culmination of years of hard work, dedication, and faith on the part of this Illinois family. Twelve-year-old Asad Jiwani – a Special Olympics gold medalist and a mathematical genius – suffers from Autism Spectrum Disorder (ASD), a complex developmental disability that he carries with remarkable strength and dexterity.
Typically, the symptoms of ASD begin before the age of three and affect a child's ability to socially interact with others. It creates a variety of language-related issues and may cause the individual to exhibit repetitive behaviours or obsessive interests. According to the US National Institutes of Health (NIH), around 1 in 100 children in the country are affected by ASD. Treatment and therapies exist to manage the condition, but the range of symptoms is so broad that there is no absolute cure available.
Asad was diagnosed with ASD before his second birthday. His parents were shocked and reacted with a mix of “denial, disappointment, and confusion,” but they also started looking for ways to help their son. Solutions were not readily available, but the Jiwanis persisted, even travelling farther afield to seek out new options.
“As time progressed, Asad became completely nonverbal,” says Samina. “It was extremely difficult to understand him. He was frequently frustrated as well, at not being able to explain what he wanted.”
With the help of doctors the Jiwanis found resources to facilitate communication, such as DynaVox, a speech generating device, and PECS – Picture Exchange Communication System. Over time, Asad was able to overcome the communication barrier. They say it takes a village to raise a child. In Asad's case, it took many different institutions to create a nurturing environment in which the youngster finally found his true calling. For his parents, identifying the right form of assistance and resources was crucial in opening new doors for Asad.
An organisation aptly named Have Dreams provided that for Asad.
Established in 1996, Have Dreams helps children with developmental disabilities improve their capacity to learn, function independently, and socialise so that they realize their potential of becoming contributing members of society. The organisation's Special Olympics weekly programme for children in aquatics and track & field not only fosters athletic abilities in children but also provides much needed hope to families.
For the love of sports
Nineteen-year-old Arsheel Lalani, who also suffers from Autism Spectrum Disorder, has much in common with Asad. The youngsters share a love for sports and neither of them consider Autism to be a barrier to their future.
When Asad discovered his love of sports at the age of eight with the aid of Have Dreams, it was as if a door to his heart had been opened. The organisation nurtured the youngster's passion, leading Asad to achieve milestone after milestone in quick succession.
Dr Anthony Alessi, chief of neurology at the William W. Backus Hospital says that sports, exercise and fitness should be encouraged as therapies for autistic individuals. “Sports play a role in treating autism by emphasising coordination and body awareness,” he says. “Dedication to improving a particular athletic skill will also increase confidence and support other therapies.”
In particular, Dr Alessi recommends track & field, swimming, horseback riding, basketball and martial arts for autistic children.
Asad who has been competing in Special Olympics since 2006, has won many medals at both district and state levels in track & field, long jump, swimming and softball throw. According to the Jiwanis, each victory built his confidence and propelled him towards the next effort.
“Frequent therapies along with a head start in early childhood schooling really helped,” says Samina. “PIAR, LCPC, Religious Education Center, and organisations like Have Dreams have made a huge difference in Asad's life. Now he is more confident and will not give up easily. He is also more willing to take on new challenges.”
The Special Olympics are hosted nationwide in the United States as well as in more than 150 countries worldwide. In Illinois, where Asad participated, Special Olympics hosted and helped train nearly 22,000 athletes. Dr Alessi believes that over the years the event has become more about sportsmanship, spirit and an approach to athletics rather than the challenges faced by the participants.
Besides sports, Asad enjoys playing computer games and reading. He is a uniformed volunteer at Chicago Headquarters Jamatkhana in Glenview, an avid Chicago Cubs fan and an enthusiastic problem solver in the field of mathematics.
Asad has other dreams as well – he plans on having a career in research in the areas of mathematics and computers. “I hope all parents of special children find the niche that makes their children happy, whether it is sports, drawing or knitting,” says Samina. “And then be part of that dream.”
Today Asad continues to receive ASD therapy to help improve his social behaviour, speech and communication skills. The road ahead may not be easy, but the Jiwanis are determined to combat the challenges as well as embrace new opportunities. After all, any dream requires patience, careful planning and a generous seasoning of faith.
The Aga Khan Social Welfare Board for the United States is sponsoring its annual Special Needs Awareness Week from 8 – 14 April 2011. During the week, special announcements, activities and awareness sessions will be held at all US Jamatkhanas.