Ryan Ba­choo

Lead Ed­i­tor-News­gath­er­ing

ryan.ba­choo@cnc3.co.tt

When Fitzher­bert Glen Niles’ son, Tyrese, was born, and it was dis­cov­ered he had Down syn­drome, he was filled with un­cer­tain­ty and a lot of emo­tions.

He ad­mit­ted to the Sun­day Guardian’s spe­cial HE mag­a­zine, “Find­ing out that he had Down syn­drome, my opin­ion at that time was that his life wouldn’t be re­al­ly mean­ing­ful be­cause he would just be over­weight and not be able to do any­thing or achieve any­thing. I was very up­set, dis­traught, sad, and an­gry.”

Nile thought it was his fault.

Tyrese’s con­di­tion would test the met­tle of his fa­ther­hood. It would be a chal­lenge he would not back down from.

“I went on to do my re­search, ed­u­cate my­self, find out what Down syn­drome is,” Niles re­called.

“I re­alised that it was not my fault. Ge­net­i­cal­ly, it’s like one per cent and it re­al­ly just hap­pened that this 21st chro­mo­some split. My whole life would have been dif­fer­ent if he wasn’t born with Down syn­drome, that’s for sure.”

Niles nev­er looked back, though. He was in­tent that his son had to live a mean­ing­ful and as nor­mal a life as pos­si­ble.

“I didn’t think that I had the at­trib­ut­es to go for­ward and make any change, but I re­al­ly evolved with it be­cause I didn’t have a choice be­cause I re­al­ly want­ed to see my son have a bet­ter fu­ture here in T&T,” he ex­plained.

To set about this jour­ney, Niles would have to re-en­gi­neer the way he thought about the sit­u­a­tion and ig­nore those who felt his son’s life was doomed due to Down syn­drome.

Niles re­called, “The doc­tors, they tell you that he might not walk, he might not talk, he might not do this, he might not do that. All the things he might not do. No­body ever gives you any pos­i­tive feed­back on what is pos­si­ble. I was lis­ten­ing to these peo­ple, I mean, they are the ones who are sup­posed to know, right?”

It would all change for Niles when he start­ed at­tend­ing Down syn­drome con­fer­ences in the Unit­ed States. A dif­fer­ent per­spec­tive on the con­di­tion had been pre­sent­ed to him.

Niles said, “Go­ing to these con­fer­ences and meet­ing young peo­ple with Down syn­drome, I un­der­stood that the dif­fer­ence be­tween how pro­gres­sive and in­de­pen­dent they are in the Unit­ed States is not be­cause they’re liv­ing in the Unit­ed States, it’s be­cause of their par­ents.

“The par­ents took the time to teach them in­stead of do­ing things for them. They em­pow­ered them at an ear­ly age. I start­ed off a lit­tle late with that be­cause I found out about that when Tyrese was about six or sev­en.”

De­spite the late start, Niles caught up quick­ly. He start­ed giv­ing Tyrese more op­por­tu­ni­ties to do things on his own, and to his sur­prise, Tyrese was do­ing it.

“We re­alised that we were re­al­ly in­hibit­ing his progress all the time by think­ing that we were help­ing him, but we were not help­ing him. This will go for any child, and the more op­por­tu­ni­ties we give them to be in­de­pen­dent, to be em­pow­ered, the stronger they will be as adults lat­er on,” Niles stat­ed.

To­day, Tyrese is 26 years old and he’s on­to his third job. His first job was with the ship­ping com­pa­ny, Aero­post, where he start­ed at 17 years old and worked there for four-and-a-half years un­til COVID-19 hit. Af­ter that, he worked as a cus­to­di­an at CLX gym in Ma­coya un­til he got COVID-19.

Now he’s work­ing as a sales rep­re­sen­ta­tive at De­tour in Trinci­ty Mall. Be­yond his pro­fes­sion­al life, Tyrese is able to car­ry out every­day tasks around the house in­clud­ing mow­ing the lawn, wash­ing the car, and do­ing oth­er chores.

Tyrese’s progress had been ev­i­dent, but it re­al­ly hit home for Niles one day when he wasn’t feel­ing well. Niles re­called, “Out of the blue, one day, I wasn’t feel­ing so good. I was look­ing at tele­vi­sion and when I got up, I swear every bone in my body was feel­ing stiff be­cause I had a bru­tal work­out the day be­fore. Tyrese looked at me, and he said, ‘I’ll take care of you, Dad.’”

“I was shocked and he came, and he hugged me.” It was a ma­jor mo­ment for Niles. For all of Tyrese’s life, he felt as though he was the one tak­ing care of his son. Now, at a mo­ment when he need­ed some­one to be strong for him, Tyrese had pro­gressed so far, he could sym­pa­thise with his fa­ther and be strong for him.

In fact, Tyrese would be­gin teach­ing things to his fa­ther as well. Niles said, “He has taught me so much with re­gards to be­ing a par­ent, with re­gards to hav­ing pa­tience, un­der­stand­ing, love, and see­ing him thrive. I’m very goal-ori­ent­ed and you al­ways want to make things hap­pen fast. There are some things you have no con­trol over.”

Niles’ work would not end with Tyrese be­com­ing an adult and en­ter­ing the work­ing world. Through the con­fer­ences he at­tend­ed in the Unit­ed States along with a pas­sion to make life bet­ter for those with Down syn­drome, Niles co-found­ed the Down Syn­drome Fam­i­ly Net­work in Trinidad and To­ba­go along with sev­er­al oth­er par­ents whose chil­dren had the con­di­tion.

He said, “The first time I went, and I met all of these peo­ple with Down syn­drome, they were so in­de­pen­dent. It was mind-blow­ing to me. So, I’m look­ing at most of the or­gan­i­sa­tions and they are run by par­ents. I’m say­ing we need some­thing like this in Trinidad be­cause the on­ly thing we had was the Na­tion­al As­so­ci­a­tion for Down Syn­drome, but it wasn’t re­al­ly op­er­at­ing at this lev­el. At the time Tyrese was born, it was just a school in St Ann’s.”

Niles would launch the net­work to ad­vance how peo­ple with Down syn­drome live in T&T. It would al­so help fam­i­lies un­der­stand how they should go about car­ing for chil­dren who are born with the con­di­tion. It would help peo­ple who were con­fused and an­gry in the same way he once was.

Be­ing a fa­ther is al­ready a chal­leng­ing job in or­di­nary cir­cum­stances, but Niles was able to shape the life of a young man with the chal­lenges he knew noth­ing about. Now, he’s try­ing to pass on that knowl­edge to oth­ers.

How­ev­er, he wants fa­thers to up­hold their re­spon­si­bil­i­ties rather than aban­don them. He added, “You are the fa­ther. You are re­spon­si­ble. You can­not give up. You can­not walk away. That child is de­pend­ing on you. That child didn’t ask to come here. We brought them here. We are sup­posed to take care of them and em­pow­er them—not just take care of them and then leave them in a weak state to fend for them­selves. We have to strength­en and em­pow­er them, and we as par­ents, that’s our re­spon­si­bil­i­ty, es­pe­cial­ly as fa­thers.”