Joys, challenges in raising a child with autism

Emerline Gordon

Ria Paria and her husband Gary knew they wanted two children, boys or girls, it did not matter. After five years as a married couple, along came Mykhal, a beautiful, healthy, bouncing baby boy. Mykhal was perfect, his smiles, his charm, his intelligence. Two years later, Aiden came along. He was also a beautiful, healthy-looking baby and for a while everything looked fine, until Aiden turned three and was diagnosed with Autism Spectrum Disorders (ASDs).

“When Aiden turned one year, I observed that he was not saying anything. Occassionally he would say “Daddy”, but most of his words were just babbles,” Paria said in an interview.

“Most babies would cry when they are hungry or when they needed changing, this was not the case with Aiden. He was a very quiet child. Very seldom did he cry. So, we never knew when he was hungry or needed something. He showed no emotions. And as he grew older, between one and a half to two years, he would be in his own little world and seemed to be uninterested in everything that was happening around him.

“At first, I thought that he was deaf, so I would sometimes deliberately drop things next to him just to see his reaction, but he would turn around and look at it and then turn away. He would also throw terrible tantrums when he needed to get something. Because I did not know what was wrong with my son, I would sometimes find myself crying,” she said.

After observing Aiden for some months and seeing no improvement, Paria turned to the internet to get information on what was happening with her son. A friend also encouraged her to take him to a speech therapis. After receiving therapy for a few months, Aiden’s speech improved but still he would not communicate with anyone, whether it to ask if he wanted something or to go the bathroom. And as he grew older, his tantrums increased.

The speech therapist advised Paria to visit a doctor who specialised in dealing with children with autism.

“When Aiden turned three, on the advice of the speech therapist, I decided to take him to a specialist doctor who deals with autism…it was discovered that he had Autism Spectrum Disorders which is a lifelong developmental disorder that affects the functioning of the brain in the areas of communication (verbal or non-verbal), social interaction how one interacts with other people) and imagination (how one perceives and reacts to the world).

“I was really traumatised by the news, but I had to come to terms with what was happening with my son. This was not the result that I wanted to hear, but knowing what the problem was, gave me a certain level of peace because now I knew what I was going to be dealing with.

“After several visits to the specialist though, there were great improvements in his behavior so much so that he went from visiting the doctor every three months to now visiting once a year,” Paria said.

She knows there are many challenges to faces daily but is thankful for the improvements she has seen thus far.

“As a parent, it hurts when I see Aiden struggling so hard to learn to do something that comes naturally to a typical child, like being able to express himself properly or even to say when he wants something. But amidst all the hurts and challenges, I feel a joy and pride in what he has accomplished thus far, like being able to use the bathroom on his own to forming sentences or even him trying to make a joke and prank his older brother – somethings which he could not have done before. To me this is progress and something to which I am grateful to God for,” said Paria.

Paria, a school teacher by profession and chairman of Autism Tobago, said raising a child with an autism disorder is both a blessing and a challenge.

“Parenting can be an exhausting endeavour but parenting a child with autism takes things to another level of fatigue. I must say my family has been pushed above and beyond our limits in raising this energetic, loving, innovative, creative and intelligent boy with autism. There would be times when I just want to flee to my sewing room for a chance to block out the world - his world. A world where each of his toy blocks is important and not one must be left behind.

“But in all of this, I am thankful that I have learnt many lessons, such as how to be patient as well as how to live with a joy that flows to others and how to love with intensity that transforms lives - something that I never would have normally done. I have also learnt to laugh out loudly even in moments when I feel like crying. And above all, I must admit that because of all that I have experienced with Aiden and just being able to see him cross certain milestones in his life that once seemed impossible, is emotionally rewarding.

“So, is it hard for me being a parent of an autistic child? The answer is yes. But I would not trade this experience for the world. Things might be tough for me, but in many ways, I feel blessed,” said Paria.

Still she worries that she is not doing enough. She wonders if her son would ever be able to drive a car, get married, or live independently. “Sometimes I even wonder what will happen to Aiden if something was to happen to my husband and me. But I am learning to now take control of my emotions as I continually remind myself that “with God, all things are possible,” she said.

She offers some advice for persons who have children with autism.

“One of the ways by which you can minimise the worries and the concerns in your life as far as it pertains to your child, is by first acknowledging that he or she has a disorder and needs help. Denial will not help you. You need to also realise that this is the child that you have and that you must work with them, taking things one step at a time.

“Having a child with autism is not the end of the world. Help can be obtained from Autism Tobago whose mission is to improve the quality of life of persons living with autism in Tobago. The group meets at Happy Haven school, Signal Hill on the first Saturday of each month at 4:30 pm,” she said.