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.