October is Down syndrome awareness month. Our campaign this month is called ‘A Day in the Life’. Throughout the month we will be sharing blogs from our community about what it’s like having someone with Down syndrome in their lives. Today, Glen Niles writes about his son Tyrese, 22. Glen co-founded the NGO, Down Syndrome Family Network (DSFN) in 2011 when his son Tyrese was 12. Its purpose is to empower the parents of children with Down syndrome so they in turn can equip their kids with the skills to live as independently as they can.

“After marriage and trying to have a baby for 7 years, Tyrese was born. I had imagined all the things we would do together, father and son. The minute he was born, and I saw him, I knew he had DS. I felt like dying which was then replaced with anger that “this” had happened to us. I’ve heard other people say “it’s a blessing” when faced with the same news but there was no way I could see this as a blessing then; that my son had been brought into the world with DS and a heart condition that would need surgery when he was just 5 months old.

There was very little support and information locally at that time so I started my own research. I began attending conferences in the US where I learned that children with DS could become functional, independent adults- people who wore corporate or trendy clothes, went to inclusive schools and colleges, had jobs, lived independently and even got married.

I got the push to start DSFN from a friend, when one day, I was ranting and complaining while we were having a drink about lack of facilities, services, opportunities etc. and nobody doing anything. He turned to me with a smile and asked “and what are you doing?”

Realistically, his mother and I won’t be here forever, so we have to do our best to ensure he is not a burden on relatives. I push my son, test his limits, physically and sometimes emotionally. I taught him to ride his bike and he exercises everyday on his own. He has chores; he mows the lawn, cares for the dogs, does his own laundry, cleans his room and bathroom and can prepare some of his meals. He has been in an internship program for the past year at Aeropost.

Since my involvement with the DSFN I have learned that some parents prefer to keep their children out of the public eye to avoid the stares, questions and comments. It’s a pity because “typical” kids are denied the opportunity to learn empathy and the understanding that we are all more alike than different.

Sometimes kids with DS are loved and protected to the point of complete dependence on their parents. As a parent of a child with DS I have to say it’s hard work, but his future and fighting for his basic human rights are his mothers and my responsibility.

Tyrese is a typical teenager – sometimes loving and happy, sometimes he wants his own way. I expect respect and ensure I give it to him in return. I’m glad he shows his feelings. He knows right from wrong. All through his life in conversations I would say “now you’re a big boy, now you’re a teenager and now you’re a young man. He needs to see himself like that so he can ask more of himself. I’m so grateful for Tyrese. I have learnt about resourcefulness, love, patience and compassion through him.”