M Bor­de

This month is Autism Aware­ness Month and sev­er­al ac­tiv­i­ties have tak­en place, no­tably the light­ing of build­ings–like Tatil Build­ing and Piz­za Hut Roxy in Port-of-Spain–in blue, as a part of an ini­tia­tive to bring glob­al aware­ness about autism. One par­ent told the T&T Guardian why she's not par­tic­i­pat­ing in any of the high­ly pub­li­cised main­stream events.

Every time I meet some­one who finds out that I have three chil­dren un­der the autism spec­trum (I be­lieve my fam­i­ly and I are prob­a­bly the on­ly ones in T&T with three autis­tic chil­dren), the fol­low­ing ques­tion is asked: How do you do it? And my an­swer al­ways re­mains the same: "I re­al­ly do not know."What I do know is that you have no idea how strong you re­al­ly are un­til you are placed in a sit­u­a­tion where be­ing strong is your on­ly choice. Not for you, but for your chil­dren.

Even though I un­der­stand and ap­plaud any cam­paign that helps to bring aware­ness about this con­di­tion, I think we should em­pha­sise more ac­tion. Yes, we can light up in blue so many build­ings in sup­port of the ini­tia­tive, and while that's won­der­ful and com­mend­able, what about an ini­tia­tive that can help fam­i­lies with autis­tic chil­dren di­rect­ly?

What about an ini­tia­tive that can help bring aware­ness at the lack of lo­cal re­sources? What about an ini­tia­tive that can cre­ate the first pub­lic school for chil­dren un­der the autism spec­trum in Trinidad? What about an ini­tia­tive that can bring some sort of respite for the many par­ents who need a lit­tle time for them­selves? What about an ini­tia­tive that can bring spe­cial­ists in autism on a year­ly ba­sis and they can eval­u­ate/di­ag­nose chil­dren who seem to have autis­tic ten­den­cies and not mere­ly com­ing to give con­fer­ences where most of the time par­ents must pay in or­der to par­tic­i­pate?

So I'm sor­ry if I don't get very ex­cit­ed about wear­ing a t-shirt that says April is Autism Aware­ness Month or en­cour­ag­ing your busi­ness to light up blue be­cause I'm too busy try­ing to get my boys some sort of need­ed ther­a­py in a place where re­sources lack ter­ri­bly and where every­thing is

over­priced.

I'm sor­ry if I don't take a pic­ture dur­ing aware­ness month or par­tic­i­pate in a walkathon in the hot Caribbean sun or pur­chase a t-shirt in sup­port. I think my time and work are more valu­able at home when I at­tempt to teach my old­est some nec­es­sary so­cial skills and try to un­der­stand his com­plex mind in a world that does not un­der­stand him and he doesn't un­der­stand.

Or work with my youngest to read, talk, help him cope with his sen­so­ry-re­lat­ed is­sues, es­pe­cial­ly when we are out­side and get him to do things that for most peo­ple are not a big deal like eat­ing us­ing uten­sils.And my mid­dle child? Well, just try­ing to bring him back to me from his autism world is a dai­ly, dif­fi­cult chal­lenge where tiny steps for­ward are gi­ant ones in his life and mine.

If you know any­one with a fam­i­ly mem­ber with autism–a neigh­bour, a co-work­er or any­one–you can make a dif­fer­ence in their lives by reach­ing out, not in the form of a t-shirt or a blue light, but by do­ing things that can help them di­rect­ly.

Most par­ents with autis­tic chil­dren are home­bound, so drop­ping by with­out let­ting them know isn't a good idea. And please don't get up­set when they can­not meet you or en­ter­tain you at home be­cause the re­al­i­ty is that their lives are very dif­fer­ent to yours. They are not try­ing to be an­ti-so­cial; they are try­ing to cope with their re­al­i­ty. All they need is un­der­stand­ing.

A lot of chil­dren un­der the spec­trum have al­so sen­so­ry-pro­cess­ing is­sues so cer­tain places, peo­ple, smells, lights can af­fect them and their be­hav­iour, so their ac­tiv­i­ties are ex­treme­ly planned and or­gan­ised for them and their par­ents' sake. I know for some, they are not fun to be around but that's okay, they passed the stage of want­i­ng to be so­cial­ly ac­cept­able (I think most par­ents of chil­dren un­der the autism spec­trum passed that stage when their chil­dren start­ing hav­ing melt­downs in the mid­dle of the street be­cause they saw a fly, smelled some­thing wrong, etc).

All we want to do is help our chil­dren.