The trinidad Guardian / Down Syndrome Family Network founder Glen Niles said he wished there had been easily accessible information on Down Syndrome when his son Tyrese was born 19 years ago. It was the knowledge that this lack of information and education persists and continues to affect families in T&T that led him to found the Network in 2011.
“I wish someone had told me that Down Syndrome is just a slight cognitive delay in learning and once you have the patience to teach him, he could do almost anything he wants. Nobody told me that, otherwise I would have started earlier in teaching him, as early intervention is the most important part. All we got was the bad things, so in learning for myself I found out late that people with Down’s Syndrome could actually go to school and get a job, and that is what changed everything.”
Niles said despite the work of the Network in promoting Down Syndrome awareness, including conferences, quarterly workshops, radio, television and newspaper interviews, “there are people, including parents with children with Down Syndrome, who don’t know about the Network and what we do. Our whole mandate is to empower the parents to empower the kids, because we cannot fight for the rights of their kids if they are not fighting for the rights of their own kids. If only one group of people is talking, you’re not getting enough impact to create change and that is one of the major hurdles to increasing awareness.”
Niles said he is happy to see that many parents are now bringing their children into public, giving them a bigger social media presence and sharing news about their development, as this helps to raise awareness of the Syndrome. In his own life, he said a major achievement is that his son has been working with the same company for two years. “He’s paving the way for others and giving hope to other parents who might feel their children will never amount to anything. Every child with Down Syndrome is different and they have to be given every opportunity to be the best that they can be, without us setting our preconceived limits and society’s preconceived limits on them.”
Niles said Tyrese is a typical teenager who wants to wear saggy pants and grumbles when asked to stop playing video games and do his chores. “I like it when he’s giving me attitude, because it means he has his own will and knows what he wants. He’s taught me love, patience, caring, acceptance and accepting him for who he is. I’m enjoying seeing him become the young man he says he is, and going out with him and having a beer, because these are things I never thought I’d be able to do. We’re also working towards him learning to drive, as there’s no specific law that says he can’t, once he can pass the regulations and the driving test. He keeps surprising me every time when we let him do stuff and he just keeps accomplishing more.”
Niles said there have been some major successes for the Network since its inception. One was the successful lobby for the ratification by T&T’s government of the UN Convention on the Rights of Persons with Disabilities, although many of the Articles are yet to be implemented. Another huge victory is that some of the parents have been able to get their children registered in regular schools, although Niles said many schools are still giving the same excuses for not taking in students, such as lack of trained teachers and facilities. “There are teachers graduating from UTT with a Special Education Degree every year who are still placed in regular schools, so there needs to be a better management of human resources. There also needs to be the political will to have a pilot project in a school or more voices coming together to make the Education Ministry actually want to develop an inclusive education system.”
Niles said in the future, “I would like to see an inclusive society, one in which the human rights of people with Down Syndrome and other disabilities are valued and defended and protected by legislation and policies. It’s easy once there’s political will. Once they put that in the mandate and they set it down, it will happen. We’d end up with a more inclusive society, where people can meet and engage with people with disabilities, and realise they have the same wants, needs and emotions, and stop being afraid of what they don’t know.”
To commemorate Down Syndrome Awareness Month, Niles and the Down Syndrome Family Network will be holding the annual Buddy Walk tomorrow, October 29. This is the sixth year that the walk is taking place and it continues to grow every year with activities and opportunities to learn more about Down Syndrome.
The Buddy Walk takes place at the Nelson Mandela Park (formerly King George V Park) from 2pm.
For more information on the Buddy Walk and the Network, find them on Facebook at facebook.com/dsfamilynetwork and go to www.dsfamilynetwork.org .