Nass­er Khan

Forty-nine-year old busi­ness an­a­lyst Glen Niles is a for­mer of­fi­cer in the Trinidad and To­ba­go Coast Guard. Not one to be in the lime­light it is ex­act­ly there he was thrust, as the fa­ther of a child with Down syn­drome, when he be­came the pres­i­dent of the Down Syn­drome Fam­i­ly Net­work (DSFN), a non-gov­ern­men­tal or­gan­i­sa­tion (NGO) which he co-found­ed in 2011.

The DSFN is work­ing as­sid­u­ous­ly to build and pro­vide a first-of-its-kind net­work in which par­ents and care­givers of peo­ple with Down syn­drome are able to ac­cess the re­sources, sup­port and an­swers they need to ed­u­cate and de­vel­op the full po­ten­tial of such in­di­vid­u­als.

This year, three fam­i­ly work­shops have been held–in March, June and Sep­tem­ber. An­oth­er work­shop is sched­uled for next Sun­day at the UWI Cam­pus, St Au­gus­tine. In con­junc­tion with the Na­tion­al Down Syn­drome Con­gress (in the USA) and dur­ing in­ter­na­tion­al­ly recog­nised Down Syn­drome Aware­ness Month (Oc­to­ber), the Down Syn­drome Fam­i­ly Net­work of Trinidad & To­ba­go held its first Bud­dy Walk in Oc­to­ber at King George VI Park, St James. It at­tract­ed more than 600 par­tic­i­pants–fam­i­lies and friends whose lives have been touched by some­one with Down syn­drome.

Q: Tell us a bit about your ear­ly years.

A: I was born and raised in Mara­bel­la, south Trinidad, and at­tend­ed Mara­bel­la An­gli­can School, Na­pari­ma Col­lege and even­tu­al­ly the Cipri­ani Col­lege of Labour and Co-op­er­a­tive Stud­ies.

What was the mo­ti­vat­ing fac­tor in start­ing the Down Syn­drome Fam­i­ly Net­work?

My son Tyrese was born with Down syn­drome. I thought he will nev­er live a ful­fill­ing life un­til I at­tend­ed the Na­tion­al Down Syn­drome Con­gress Con­fer­ence in the USA. There, I met young adults with Down syn­drome who at­tend­ed high school, col­lege and uni­ver­si­ty, work­ing in­de­pen­dent­ly, liv­ing in­de­pen­dent­ly and even mar­ried. I re­alised that Tyrese can have what we con­sid­er a nor­mal life. I teamed up with oth­er par­ents and start­ed the net­work to work on achiev­ing those ob­jec­tives here in Trinidad.

What do you think is the biggest chal­lenge and, con­verse­ly, op­por­tu­ni­ty for DSFN?

I think the biggest chal­lenge is ac­tu­al­ly de­ter­min­ing the po­ten­tial of chil­dren and young adults with Down syn­drome. Un­til I was aware of what peo­ple with Down syn­drome were ca­pa­ble of do­ing abroad, I thought my son was "spe­cial" and would nev­er be able to re­al­ly amount to any­thing be­cause I had nev­er seen some­one with Down syn­drome or knew any­one with Down syn­drome who did. From an or­gan­i­sa­tion­al per­spec­tive there are al­so chal­lenges es­tab­lish­ing your­self, pro­mo­tion of your ideals and be­liefs, at­tract­ing fund­ing and vol­un­teers and com­mu­ni­cat­ing our vi­sion to non-be­liev­ers.

Con­verse­ly, the biggest op­por­tu­ni­ty is iden­ti­fy­ing that po­ten­tial and ex­plor­ing it, de­vel­op­ing it and chal­leng­ing it.

Un­know­ing­ly, we as par­ents set lim­its to what we think our chil­dren can or can­not do. In some in­stances we push them past their lim­its, in oth­ers we pre­vent them from even reach­ing their lim­its by con­trol­ling what it is per­ceived they can or can­not do.

Why was the re­cent Bud­dy Walk such an im­por­tant event for DSFN?

Since its in­cep­tion in 1995, the Bud­dy Walk has been the pre­mier ad­vo­ca­cy event for Down syn­drome in the Unit­ed States.

Now, it is the world's most wide­ly recog­nised pub­lic aware­ness pro­gramme for the Down syn­drome com­mu­ni­ty.

Be­ing a young or­gan­i­sa­tion, we are look­ing at in­ter­na­tion­al best prac­tices and us­ing them to en­sure the suc­cess of the DSFN here in Trinidad and To­ba­go.

What is the most preva­lent mis­con­cep­tion about chil­dren with Down syn­drome?

There are sev­er­al myths and mis­con­cep­tions about Down syn­drome, but I think the most preva­lent is that all chil­dren with Down syn­drome must be placed in a seg­re­gat­ed, spe­cial ed­u­ca­tion pro­gramme.

What is the most valu­able piece of ad­vice you give to par­ents when they find out their child has Down Syn­drome?

It's not the end of the world. It's not a hope­less sit­u­a­tion and with ear­ly in­ter­ven­tion their child can still live a rich, re­ward­ing, in­de­pen­dent life.

What do you wish some­one had told you when you found out your son, Tyrese, has Down syn­drome?

I re­al­ly wish some­one had whis­pered those very words in my ear; just what I men­tioned. We didn't know any­one with a child with Down syn­drome, we didn't re­ceive any in­for­ma­tion from the nurs­ing home, we didn't know what to ex­pect. There was no sup­port mech­a­nism in place and that es­sen­tial­ly is what the DSFN is work­ing on.

What do you think Trinidad and To­ba­go has to do to reach the lev­el of North Amer­i­ca and Eu­rope when it comes to op­por­tu­ni­ties for peo­ple with dis­abil­i­ties and leg­is­la­tion pro­tect­ing their rights?

We need to amend the ex­ist­ing laws and then move on to the dif­fi­cult but not im­pos­si­ble task of en­force­ment. Once we put the nec­es­sary sup­port mech­a­nisms in place as they did, I be­lieve we can al­so be suc­cess­ful.

You have a full-time job. How do you fit the DSFN work in­to your sched­ule?

It is dif­fi­cult. My day nev­er ends un­til late at night as the net­work takes over af­ter 6 pm. I re­mem­ber call­ing par­ents every evening, with each call some­times last­ing in ex­cess of an hour. Hear­ing ex­pe­ri­ences and shar­ing mine has been an in­te­gral part of help­ing the net­work de­vel­op in­to what it is to­day, and to con­tin­ue de­vel­op­ing and em­pow­er­ing par­ents to ad­vo­cate for their chil­dren un­til they can do it for them­selves. Al­though we now have an ex­pe­ri­enced vol­un­teer mak­ing calls to par­ents, it is im­por­tant for the mem­bers on the board to con­tin­ue the con­nec­tion with the par­ents.

If some­one on­ly reads a cou­ple lines of this in­ter­view what would you want them to know?

I would want them as par­ents or prospec­tive par­ents to ap­pre­ci­ate and fo­cus on the abil­i­ties of their chil­dren and how it can be en­hanced. This is for all par­ents.

Most times NGOs are led by moth­ers or women, and its par­tic­i­pants are main­ly fe­male. Here you are, a fa­ther lead­ing DSFN. Do you think fa­thers are ful­fill­ing their roles as in­volved peo­ple in sup­port­ing equal­i­ty and op­por­tu­ni­ties for chil­dren with dis­abil­i­ties?

Let me an­swer that one this way: at one of the Na­tion­al Down Syn­drome Con­gress Con­fer­ences held in the US an­nu­al­ly, I at­tend­ed a DADS (Dads Ap­pre­ci­at­ing Down Syn­drome) work­shop and it was an in­ter­est­ing ex­pe­ri­ence which I would like to share. The chairs were arranged in a cir­cle close to the wall and there were ap­prox­i­mate­ly 40 peo­ple present. For the first five min­utes no one spoke. The mod­er­a­tor was not iden­ti­fied and on­ly a cou­ple peo­ple were hold­ing pri­vate con­ver­sa­tions. Oth­ers were on their phones or just lit­er­al­ly twid­dling their thumbs. The mod­er­a­tor fi­nal­ly in­tro­duced him­self, he was in the room all along and start­ed speak­ing about his ex­pe­ri­ences be­ing a fa­ther to his daugh­ter with Down syn­drome.

Very slow­ly the room came to life; an­oth­er fa­ther spoke, then an­oth­er as they all be­gan shar­ing their ex­pe­ri­ences. Then the tears be­gan to flow from those speak­ing and from those nod­ding in as­sent. I won­dered if there were women in that room if any of the men would have shared their emo­tions so hon­est­ly. In speak­ing to some of the moth­ers both here and abroad they all men­tion that their hus­bands or fa­thers of their chil­dren do not ex­press their feel­ings about hav­ing a child with a dis­abil­i­ty, but re­main the strong, silent type, the op­po­site of what is need­ed.

What is the net­work's self-ad­vo­cate pro­gramme all about?

It is about em­pow­er­ing our young adults with Down syn­drome to speak for them­selves as ad­vo­cates, to ex­press their own views and ideas on is­sues that af­fect them. Our pro­gramme at our quar­ter­ly work­shops is de­signed around de­vel­op­ment of this skill even with the chil­dren un­der the age of 15.

What is the biggest need/pri­or­i­ty of DSFN and how can peo­ple help?

The biggest need of the net­work is for the par­ents of chil­dren with Down syn­drome to come to the fore with their pro­fes­sion­al ex­per­tise to take the or­gan­i­sa­tion for­ward. The net­work is not just the board of di­rec­tors and my­self, it is re­al­ly a fam­i­ly net­work and we need every­one to be in­volved. We are al­so de­vel­op­ing a data­base of pro­fes­sion­al vol­un­teers who are will­ing to work with us in achiev­ing our ob­jec­tives of in­te­gra­tion and in­clu­sion, so we con­tin­ue to in­vite peo­ple to join our team. Our oth­er need is fund­ing to con­tin­ue the work we have start­ed. Our spon­sors are our part­ners, they are re­al­ly in­vit­ed to part­ner with us on ini­tia­tives and see how their in­vest­ment ma­te­ri­alis­es.

Who are the peo­ple who in­flu­enced you the most-in your ca­reer and in life in gen­er­al and how did they?

My par­ents, the foun­da­tion they gave me and the stan­dards, morals and val­ues that they set for me and taught me.

De­scribe your­self in two words, one be­gin­ning with "G", the oth­er with "N", the ini­tials of your name.

Goal ori­ent­ed and no lim­its.

What oth­er in­for­ma­tion about the Down Syn­drome Fam­i­ly Net­work would you like to share with our read­ers?

• Please vis­it our Face­book page http://www.face­book.com/ds­fam­i­lynet­work and in­vite/en­cour­age your friends, fam­i­ly and as­so­ciates to do the same.

• Do­na­tions to our or­gan­i­sa­tion can be de­posit­ed to our ac­count at RBC ac­count num­ber 110000001459417.

• The next fam­i­ly work­shop is sched­uled for De­cem­ber 9, 2012, at UWI Cam­pus, St Au­gus­tine and all are in­vit­ed to at­tend.

• Please help us to speak out so our chil­dren can be heard.