Superheroes disguised as parents

DR RADICA MAHASE

JASON IS A single parent. The younger of his two daughters was diagnosed with autism at age three, only a few months before her mother left. Since then Jason has sole responsibility for his daughters. Initially he managed quite well as he had a good job that allowed him to hire a babysitter who took care of the girls. Things got bad when his non-verbal daughter started experiencing a series of developmental issues; the babysitter left the job claiming she couldn’t care for a “dumb child” and Jason was laid off from work.

Since his daughter’s diagnosis he has been fired from four jobs for either irregular attendance, unpunctuality or low performance. His daughter has been moved from one daycare to the next as he struggled to find someone who could understand her special needs. Life has been tough for him as a single parent.

Life has also been challenging for Carl and Marisa, parents to ten-year-old Nicky. Nicky was diagnosed with autism and other medical complications six years ago. Since the family lives in a rural area with no special schools nearby, Marisa was forced to take a part-time job so she could stay at home and care for Nicky.

Although both Carl and Marisa are income earners and they have a supportive extended family, Nicky’s high medical and therapy bills mean they are struggling financially. This has impacted negatively on their marriage and, like many other parents of children with special needs, they struggle to cope mentally and emotionally.

Being a good parent to any child is a difficult task. The thing is, when you have a “normal” child you can cater to that child’s needs, access opportunities available and you have the hope that your child will grow up to be an independent individual, with a job etc. With a special-needs child it is a whole different scenario. Parents must become advocates in order to provide the basic needs such as medical care, education and therapy for their children.

The deeper turmoil is not knowing what kind of future your child will have, worrying whether your child will ever be able to take care of him/herself and if not, then who will take care of your child when you’re gone. It is an intense test of inner strength to deal with the physical and mental exhaustion and feelings of being isolated. Parents are required to have superhuman powers to cope in a society which is simple unaccommodating towards those with special needs.

But surely the situation doesn’t have to be this challenging. Accommodation and support can go a long way in changing it. Support from the highest to the lowest level is desperately needed. At a national level, policies and structures to accommodate those with special needs will certainly help.

A government sensitive to those with special needs, the provision of services in the public sector and public servants who are empathetic will help parents to cope. Parents need to know that there are proper activities for their children; that they can drop their children off at a school and that their child is safe; that someone qualified and empathetic is taking care of their child; that their child has access to fun learning and a safe environment. They need a system working with them, not frustrating them.

At another level they need a society that is accommodating. They certainly don’t need people staring at their children when they are in public spaces; they do not need people telling them what their children should/should not eat and how they should discipline their children because society thinks that a meltdown is really “a child being harden.” Parents do not need therapists who are not fully qualified charging them high fees. Parents certainly do not need to feel like everyone is trying to make money off them because suddenly autism is a business in Trinidad and Tobago, with “experts” popping up in every corner.

While parents love their children unconditionally, every milestone, no matter how small, becomes a celebration and every smile and hug brings joy. More than anything else, parents of special needs children need hope – the hope that there is a future for their children. This may come in the form of a smile, an offer to help in whatever way or an understanding gesture. Kindness, support and understanding can go a long way in helping a parent on any given day because even superheroes can become exhausted.

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