Celebrating autism awareness month

DR RADICA MAHASE

“Why should I celebrate? Do you know how hard it is to raise a child with autism? Every single day I struggle; what do I have to celebrate?

"When Kira was born, my wife and I were so happy. I always wanted a daughter and I was so proud. Then we found out she has autism and the stress started. Do you know how much trouble we went through to get things for her? My wife was always stressed out. When Kira was eight years old my wife left, she said she couldn’t do this anymore. It’s been four years since I struggling to raise my daughter. Some days I just too tired to wake up and some days I can’t even look at my daughter without breaking down because I know I am not helping her enough.”

Rondell is just another parent of a child with autism who struggles on a daily basis to provide for his child. Kira’s mother is just another parent of a child with autism who could not deal with the pressures of raising a child with autism and instead walked away. Sometimes in the midst of the daily struggles, stress and frustration is it very difficult to focus on the positive things most of the time. That’s why when April comes around and everyone is talking about "celebrating autism awareness month" some parents react the way Rondell did.

Rondell was very clear, “It’s not that I don’t love my daughter. I love her more than anything in the world. But I am so fed up of feeling useless, like nothing I do is enough to really help her. I just wish that things were better, easier for her. I am not asking for handouts. I am just asking for the basic things to be available to her.” Rondell hit the nail on the head with his last statement! Many people believe that parents of special needs kids just want handouts but that is not the case. Many just want their children to have access to the basic things that all children should have – a school to go to, affordable therapy and somewhere they can socialise comfortably.

So often we forget to consider the mental health of parents of special needs children. When you are with your child all the time and there is no avenue for even a short break then parents and caregivers feel overwhelmed and react in different ways. When single parents like Rondell are working multiple jobs to make enough money to provide basic things for their children, when they are exhausted and burnt out most of the time, when do they get time to really spend time with their children or enjoy being a parent? What then are they really celebrating in April when it’s just another month of frustration?

Parents just need a proper system in place to help their children – schools to attend and therapy available, then life would be so much less stressful. Or how about if there was counselling services available to parents/caregivers or the entire family? These basic services are crucial in the life of a special needs parent/caregiver. This should be the focus during April.

This year there was much more focus on autism in the media. Social media was trending on April 2 and it was a pleasure to see government bodies posting about autism. What were lacking though were the real attempts to make a difference in the life of someone with autism. At no point did any individual or organisations – government, business or private, come forward and offered real assistance or even suggestions that can improve the lives of those with autism. While posting a flyer might bring some awareness (and awareness is always good|) at the end of the day, parents like Rondell will continue to feel overwhelmed because there are no real changes in their children’s lives on a daily basis.

April is a good time for organisations and businesses to embrace ides of diversity and to implement policies of inclusion. It’s a good time to employ someone with autism, even if it’s as a trainee or a temporary worker. It’s a good time for the government to present a comprehensive plan on education and social services; to open up discussions on making real changes. When this is done then parents like Rondell can truly celebrate Autism Awareness Day and month!

Dr Radica Mahase is founder/director, Support Autism T&T