Autism parents

DR RADICA MAHASE

NAVIN and Ria are one of the many middle class parents in TT. They have three children and their nine-year-old son was diagnosed with autism a few years ago. Like other parents, they have a very deep sense of responsibility towards their children and life revolves about providing for them, growing them up to be independent adults and giving them all the opportunities so that their can have a bright future.

Sometimes they struggle, especially with increases in the cost of living and the fact that Ria lost her job as an administrative assistant in Petrotrin last year which meant that that have been forced to cut back on many things. Navin said, “We have three wonderful children; we try to give them whatever they need for school, etc., by cutting back on things for ourselves. At the end of the day it can be tough especially when you want to give your children so much more. With my son especially, I feel really bad because I will like to give him more hours of therapy and put him in a private school where he will really get the help he needs. But it’s just too expensive and we can’t afford it right now. The thing about Ria losing her job is that she’s at home and she’s teaching him to read and to do different things. And at least we know he’s safe when he’s with her. So while we need her salary we have to try to be positive about everything.”

Earlier this month, on June 1 to be exact, the world celebrated Global Day of Parents. This day was proclaimed by a resolution of the United Nations General Assembly on September 17, 2012. It is based on the entire idea that, “Parents of every race, religion, culture and nationality in all parts of the world are the primary caregivers and teachers of their children, preparing them for a happy, fulfilling and productive life. Parents are the anchors of the family and the foundation of our communities and societies.” It is a day to honour parents, recognising that parents have the most important role in bringing up children.

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Parents of special needs childre n tend to have extra responsibilities and are required to be so much more to their children. In the case of Ria, she is not only the caregiver but also the teacher as her son is not attending a school. Additionally, parents of special needs children become advocates, fighting for opportunities for their children, more so in countries like TT where special needs opportunities are lacking on so many levels.

At the same time, it is important to understand that there are many special needs parents who embrace their journey. Navin put it perfectly when he said, “My son has taught me to be more open-minded about everything. A lot of things I took for granted with my two older daughters I don’t do with him. I always thought my children will go to the best schools and will become professionals. With him, I am just happy to hear him say new words and I celebrate when he says full sentences. It’s so different – there are no expectations and just happiness to see whatever little thing he accomplishes.”

For Ria, “He my child, it doesn’t matter if he has autism or if society says he’s inadequate in some way. I know people think that if you have a disability then that means that you are worthless but not with my son. I will continue to teach him whatever I can. These days he loves to bake so I am teaching him to bake. Who knows maybe he will grow up to be a baker? I don’t stop thinking for a minute that he isn’t capable of having a good life and when people come around to tell me otherwise, I shut them down right away! He has taught me to be a much better person, he gives me strength and hope and yes, sometimes being a parent to him is challenging but I won’t trade him for anything in the world!”

The UN’s designated Global Day of Parents notes that, “the international community needs to develop and expand family-friendly policies and services,” in order to support both mothers and fathers. Counselling; parents support groups; proper education, social welfare and health systems are just some of the things we need to have in TT to help support all parents.

Dr Radica Mahase

Founder/Director, Support Autism T&T