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Shining a light on Down syndrome
Glen Niles’ son Tyrese, born with Down syndrome in 1998, is now 15 years old. His birth, originally experienced as a tragedy, a loss of a father’s dreams for his son, has inspired tireless work to establish a Down Syndrome Family Network in T&T—the ethos of which is to transform those common misperceptions about the potential of children with Down syndrome, into the empowering and faith-restoring acknowledgement that these children can have a fulfilling life experience.
Niles co-founded the Down Syndrome Family Network in March 2012, after a series of experiences made him realise that he was wrong about what was possible for his son. Travelling in 2008 to the National Down Syndrome Congress Conference in the US, he met young adults with Down syndrome who had attended mainstream school, and gone on to live and work independently, as well as to marry.
And he discovered, that this outcome wasn’t confined to the people he met at the conference. Unlike the invisibility of young people with Down syndrome in the world of work here in T&T, Niles describes being awestruck when served by a young woman with Down syndrome in a coffee shop. He couldn’t keep his eyes off of her. Watching her every movement, he noted her competence, professionalism and most importantly independence. “When she hung up her apron for the day,” he explains, “I was sure she was going to be picked up by her caregivers.” He was even more blown over when she walked to the bus stop and got on the third bus that stopped, clearly aware of the route she needed to take.
Instead of having 46 chromosomes, 23 from each parent, people with Down syndrome have a chromosomal disorder which means that they have 47. This extra chromosome which can come from either the egg or sperm is called the #21 chromosome and its presence creates a range of physical and cognitive features including eyelids that may appear to slant upward, small ears that may fold over at the top and slower development when it comes to walking, talking and reaching other typical child development milestones like being potty-trained.
In places like the US, UK and Canada, attitudes towards children and adults with Down syndrome have evolved rapidly in recent decades, with speech and physical therapy proving that for many with the disorder, development is the same, just slower, and that the range of possible mental disability doesn’t stop many of them from being included in regular schools and working at anything from clerical jobs to more creative pursuits like photography.
But in the developing world, changes in Down syndrome awareness have been slower and Niles found that when his son was born there was no support mechanism in place to advise on what to expect or to process the emotions common when parents unexpectedly give birth to a disabled baby.
A change in perception
Although Niles, self-described as “solutions-oriented,” encouraged his son’s physical development through massage and play, he admits that he spent the first ten years being less than proactive, buying into the prevailing idea that the disorder meant that his son would never amount to much. Like many whose lives take an unexpected turn, Niles explained that he initially just wanted someone to blame.
“I blamed the school, the government,” he explains, until over a couple of drinks, he was challenged by one of his closest friends. “He asked me what I was doing for my son,” he reflects. “He said I shouldn’t expect anyone to care about my son more than I did, that I needed to create that better future for my son, and that granted I might need the help of the government and the school but they might need my support to find out how.” Admitting that his first reaction was anger, Niles knew his friend was right, and his direct words marked the beginning of change.
Now president of the country’s only non-governmental organisation working for Down syndrome awareness, Niles believes he has changed immensely since that eureka moment. For one, he rarely sleeps—working as a financial analyst by day and an invested volunteer by night.
But as a person, his grief has turned into hope, largely because the research he was motivated to undertake led him to organisations like the National Down Syndrome Society and the National Down Syndrome Congress, in which he has found a surrogate family of other parents and watched young people with Down syndrome grow into able young adults at the conferences he has attended every year since 2008. He has been able to confront his deepest emotions about having a son with Down syndrome, “breaking down completely” at the launch of the Network, as he publicly spoke about his son for the first time. He has now taught his son how to ride a bicycle and they regularly enjoy riding together. “I realised,” he says, “life is short so make it as meaningful as you can.”
He now hopes to act as a similar catalyst in the lives of the families he works to recruit into the Network. As part of the work of the Down Syndrome Family Network, parents (membership, including young people with Down syndrome, currently stands at 200 strong) are invited to quarterly workshops where they are coached to become self-advocates and are encouraged to explore the range of possibilities available to their children, challenging the limitations they have set.
They are advised on retaining the services of speech and physical therapists and exposed to advancements in Down syndrome therapies. The organisation is especially keen to attract parents with older children, who may erroneously believe that it is too late for their children. “Older children can still benefit from interaction,” says Niles, “from being taken out of their comfort zones.” Niles, who gained so much from participation with international NGOs also encourages parents to attend the conferences that pushed him past his previous limited beliefs.
Alongside the parent groups, workshops are also held for two different age groups of young people with the condition, focussed on self-advocacy and fostering independence.
World Down Syndrome Day
Every year on World Down Syndrome Day, March 21, the Network, like its sibling organisations across the globe, hosts a conference. The theme is set by the United Nations who declared the day in 2005, and this year the theme is Health & Wellbeing—Access and Equality for All. Thirty-six-year-old keynote speaker David Egan, a self advocate and special Olympian with Down Syndrome, will be a reflection of the network’s slogan—Limitless Possibility. “People should come and hear him speak,” said Niles. “He shows there is hope and what will be clear is that he is like that because of his parents...because they fought for him to be educated at a time when there was no inclusion in the US either.” Director of the National Down Syndrome Congress, Carol Guess, will also share her experience of advocacy as a professional and parent of a nine-year-old with Down Syndrome.
The conference will be held on March 21 at the Magdalena Grand, Lowlands, Tobago and on March 22 at the Hyatt Regency in Port-of-Spain, Trinidad. It is free to persons with Down Syndrome. Having proven sustainability and robust financial management, the Down Syndrome Family Network is on track for charitable status and has attracted a range of corporate sponsors. This comes at a time when the network has detailed a more aggressive strategy that will use the funding to also offer supportive services on Down Syndrome to the government and the medical establishment and encourage medical professionals like psychologists and doctors, who specialise in working with people with Down Syndrome to become members of the Network.
Reflecting on the Network’s growth and planned scope expansion, Niles remembers when it was just an idea. “I felt like Columbus trying to convince his countrymen that if they travelled to the horizon they wouldn’t fall off the edge,” he says. “People laughed at me.”
He admits that success is still often hard won, and that he still relies on the annual conferences—this year it will be in Indianapolis—to remind him that the network’s goals can be achieved, and to return with the motivation to continue. Perhaps humbled by the task ahead, Niles forgets to mention that he has just won an award from Down Syndrome International for “outstanding voluntary and professional activities”. He speaks instead of how important it has been to be a part of a supportive team in the form of the network’s board of directors and how invaluable conference chairperson Lisa Ghany has been, in putting together the groundbreaking event that will be hosted on the weekend. His words gently remind that especially when reaching for the stars, life is easier when we choose not to do it alone.