My experiences as the parent of an autistic child

DR RADICA MAHASE

The following is an interview with Kira, the mother of a 12-year-old child with special needs. Kira’s son Thomas, was diagnosed with autism spectrum disorder and attention-deficit/hyperactivity disorder (ADHD). He has been on medication for the past four years because he gets seizures.
Kira was a dental assistant but she left her job six years ago so she could take care of Thomas. Her husband works in the construction industry and she has two other children – a 14-year-old daughter and five-year-old son.

“When my son was born, I felt that my world was complete. At that time, my husband and I were happily married for ten years and we had our daughter and we felt that we had everything we need in life. We had plans to give our children all the things that we never had – travel, learn new things, enjoy our family. We had all these grand plans of what our lives will be.

"Everything changed when my son was about two years old. We picked up on all the delays in his development – he wasn’t saying words, he didn’t smile at us, he would rock back and forth.

"As I had worked in a dentist’s office, I had interacted with children with special needs before, so I recognised the signs early.
"The first hurdle to cross was to get him diagnosed. This took a lot of back and forth – we waited almost a year for the appointment, but once we visited the development paediatrician, Thomas was diagnosed with severe development delays.

"Getting the diagnosis was one thing, dealing with it was another thing and helping him was a whole other thing. I think our biggest fears was how we would take care of him – where we would get the money to afford the therapy, etc.

"It was a little harder for my husband because he didn’t know anything about autism and ADHD, but he was very willing to learn. I remembered he immediately went online and started looking for information. He is a very practical person, so he was the one to say, 'Let’s sit down and make a plan, let’s see what we need to put in place to make sure Thomas gets the help he needs.' I would have been totally lost without him and the one thing I know – I cannot do this special-needs parenting thing without his support and the support of both our parents.

"I have made mistakes, many mistakes, along the way. I know that I neglected my oldest child many times. In the early days, I was so focused on helping Thomas – driving from one therapy to the other; running down schools – that I missed many parents’ days, sports days, we didn’t have the money for her to do extra-curricular activities. On the days that Thomas was sick, I depended on grandparents to drop and pick her up from school. At one point we stopped going to movies and beach and just going out at all, because Thomas was going through a rough time or having a bad day and I felt bad that Chrissy, my daughter was the one who really missed out on things.

When I got pregnant with my second son, I was really scared that he would also have development delays. Although I knew better, there was always this little thought in my mind that maybe I didn’t do something correct and that’s why Thomas has autism, so for my third pregnancy I was really careful to make sure that I did everything possible – eat healthy; take my prenatal vitamins; I didn’t miss any doctor’s appointments. When my younger son was a toddler, I was constantly watching for signs of delays. Now he is five years old and he’s really doing well and I feel a sense of relief.

"There were many times that I broke down and cried and lashed out at the people around me because I was stressed out. That was usually when Thomas was ill or we were in a really bad place financially and I was frustrated and depressed.
"At one point, my husband and I had to go for counselling, because we were always arguing about money – he was working long hours to make extra money for Thomas to get speech and occupational therapy, and I couldn’t go back to work because I had to be there with Thomas. We didn’t qualify for the social welfare grant because of the means test. It was a really stressful time for us.

"Many times, I get real vex with people when they’re staring at Thomas – we passed the stage where we used to stay home; now we go out and take him everywhere. I don’t care what people say and think. I am a very outspoken person and I answer back people. I am not letting anyone tell me anything about my child.
"As much as I might fall apart and break down and struggle with the challenges of taking care of my son and trying to give him the help he needs, I still feel grateful for everything that I have. I know how blessed I am to have the support of my husband and our families and I thank God for them every day. I only wake up every morning with the strength to take care of my son because I believe that my God has a plan for him and I pray every day that when I am gone, he will be loved and cared for.”

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