Durban family drive autism awareness

TIM and Nicol Pretorius are parents to six-year-old Peyton who has Autism Spectrum Disorder (ASD). As April is Autism Acceptance Month, the Pretorius family, who reside in Farningham Ridge, share how they discovered their daughter was on the spectrum, and what it is like to be parents of a child with ASD, in an effort to make people more aware and mindful of autism.

Also read: World Autism Acceptance Day: Benefits of sensory play

What were your first experiences with Peyton being on the spectrum?

When she was a baby, it was extremely difficult to get her to go to sleep. As she got older, she just didn’t sleep, and we would be awake with her some nights after 11 pm. She was also delayed with all her milestones from baby to toddler, and still, as a six-year-old, it takes her much longer to process and grasp or understand something you have said to her or asked her.

From a very young age, she had absolutely no fear of anything – heights and speed would not stop her from doing what she wanted to do – and if she was determined to do something, she would do it no matter how much danger she was in.

Her speech delay was the biggest red flag for us. By the age of three, she still wasn’t talking, and her vocabulary was very minimal. She could understand when we told her about a simple thing like to go bath but could not execute a sentence. Even now, her sentences are still very short, but they are improving.

Certain foods and textures were an issue. She hated loud noises and still does. She used to mess her food or spill her water out of their containers on purpose and then lick it off the dining room table. We couldn’t understand why she would do that – now we do – it’s sensory!
She would also watch the same thing over and over. She would listen to the same songs. She has just a handful of favourites.

As she got older, malls or crowds became an issue for her, and she would act up in the shops. As it stands now, we can take her to one shop only, and when she’s had enough, we go home.

We thought she was just naughty when she would act up. She was all over the place, and we just couldn’t understand it and were pulling our hair out – frustrated is an understatement! We were desperate for help and answers as every avenue of discipline we tried was a failure. She was often put in the naughty corner and labelled naughty.

How did you discover she has ASD?

In 2021, when we pulled her out of school, she had a facilitator at home on weekdays, and that’s when she also started occupational therapy. From here, we were referred to the perfect school for her, and she was placed in the early intervention unit, with the school suggesting we see a paediatric neurologist. We went to see Dr Keshave – we highly recommend him. He asked in-depth questions from the start of the pregnancy to the birth and about her years growing up. He also booked us for blood tests and an MRI, which she had to be put under anaesthetic for. Once all the results were out, it was confirmed that Peyton (four years old at the time) has ASD.

Take us through the steps after her diagnosis

Peyton was put on medication – it took time to get the dosages balanced right for her to function on a day-to-day basis. She continues in the early intervention unit at school and also sees a speech therapist.

What are some of the challenges you experience as a family?

Every day is a challenge. We always joke and say we never know which one of her personalities we are going to get for the day. Most days, from getting dressed to eating breakfast, brushing teeth and leaving the house is hard. Not every day, as some are better than others.

We must always have extra time on our hands in case Peyton has a breakdown. Weekends are a little bit easier. When she was younger, she needed a lot of attention. She was always sick, and we spent a lot of time in and out of doctors’ rooms and hospital. We have an older son, Connor, so we had to ensure that his needs were met and taken care of, too, while Peyton needed us. By the grace of God, we made it work.

We hardly do things together as a family. We spend a lot of time at home as that’s where Peyton feels most comfortable – even when we go visit family or a friend – once in a while – she’s always excited to go home and lets us know very quickly when she wants to go.

One place she really loves is Spur. We cannot get her to leave – no matter how many times we give her a heads-up that we are leaving in five minutes, she’s never ready to leave. It’s always a kick and a scream, and what looks like a tantrum to the outside world, is a meltdown in her little world as she can’t understand why she can’t play for longer.

Our lives have had to change drastically to fit in with her and her little world. A lot of times, we are invited somewhere but cancel at the last minute because Peyton doesn’t want to go. Our lives revolve around her, and we are totally fine with it. We have lost a lot of friends because of this, but again, we are fine with it as we are happy when Peyton is happy. Thankfully, Connor is very patient and understanding with his sister. He knows how to deal with her and how to handle her on a bad day. They do have their moments, but they also love each other dearly.

What are some of Peyton’s favourite things?

She loves being a ‘helper in the kitchen’ as she calls it, when I’m cooking or baking. She can play for hours in our garden with her truck in the sand and with her toys. She enjoys playing with cars and dolls, and she also loves watching Netflix and playing games on her tablet.

What advice do you have for others?

Take the time to know and understand ASD. Never judge or label the child or the parents if you have no idea what they are going through. Don’t offer advice – personally, this annoys me when advice is offered from a person who has absolutely no knowledge or understanding of ASD.

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