When hopelessness knocks at an autism parent’s door

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DR RADICA MAHASE

according to Nelson Mandela, former President of South Africa, “As long as poverty, injustice and gross inequality exist in our world, none of us can truly rest.” All of these exist right here in TT but it appears that most people, especially those in positions of power, can rest quite easily without being bothered by it. Even before covid19 appeared, TT was not a country that could boast of equality for all; an irony given the words of our National Anthem. Covid19 has only worsened the inequalities and poverty in our country. Here are just two of many examples.

Mikela works at a government office. She has a six-year-old son with autism. She is a single parent and lives with her mother who helps take care of her son when she’s at work. Generally, she is able to provide the basic necessities for her son. She has been unable to pay for therapies for him but pre-covid he was attending a school for special children and progressing well.

During covid19 restrictions she was okay because she worked from home, she had a salary coming in and she was able to take care of her son. Recently her mother got ill and cannot take care of the child anymore. Mikela requested to work from home a few days a week but her employers denied her request claiming that TT doesn’t have a fixed work-at-home policy for government employees. Her only option is to take no-pay leave because, with schools closed, she has nowhere to leave her son. Her leave is indefinite and depends on when her mother recovers enough to help her or when schools reopen. This means that she has no source of income for an indefinite period of time.

Mikela noted, “When my request to work partially from home was denied I immediately panicked. I am not in a position to live off savings; the little savings that I have are for emergencies. I am so worried because now I don’t even know how I will feed my child in a couple of months. I feel hopeless. I am trying everything to stop myself from becoming depressed. The last time I felt hopeless was when I couldn’t get my child into a school, now it’s because I worry about what he will eat. No parent should have to worry about what their child will eat.”

Every child should have access to equal opportunities. – Keegan Callender

Brian’s situation is very similar to that of Mikela’s. Brian lives in a very rural area in north east Trinidad. He has twin boys, both diagnosed with autism. He is a construction worker and has been in and out of employment for more than two years. The contractor he worked for didn’t get any government contracts and had to put his employees on a part time system.

After he became unemployed his wife became the breadwinner but several months after she passed away due to heart complications. Since then, the family of three has been living off the social welfare grant. Sadly, his boys have been lacking the education that they need and he cannot afford to pay for therapy. Brian doesn’t have any family member who assists him financially or otherwise.

A couple of months ago one of his boys started getting seizures and because the clinic in the hospital was closed, he had to take him to a private doctor. According to Brian, “I used my rent money to make sure that my son got medical care and then the landlady threatened put us out because I couldn’t afford to pay rent. In the end her husband begged for me to pay late and we were able to stay. But this whole incident made me feel so depressed. I feel hopeless because I can’t take care of my sons. I worry about them every day.”

As a nation, we need to start thinking about parents like Mikela and Brian who live in poverty and who feel hopeless. Eradicating this kind of poverty, injustice and gross inequality in TT would only come when there are policies in place at a national level; policies that are effectively implemented and that reach the most vulnerable in our country. As Mandela said, “Overcoming poverty is not a gesture of charity. It is the protection of a fundamental human right, the right to dignity and a decent life.” Brian and Mikela and their children and every single citizen of TT should have that right.

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

 

The post When hopelessness knocks at an autism parent’s door appeared first on Trinidad and Tobago Newsday.

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