When our bundle of joy Lerato (not her real name) was born 15 years ago, we were ecstatic. It was the moment we had been waiting for as our first pregnancy had resulted in a miscarriage and this one was mired in biological ups and downs.
We had been married for four years and were going to have our first child as a married couple. Each of us had come into the union with a child from our previous relationships.
The pregnancy came unexpectedly as our gynaecologist had said we would never fall pregnant again.
The delivery day came one September evening, and I had the privilege of cutting my baby’s umbilical cord. The odd thing happened though, to which we never paid attention, but was later informed about by the paediatrician, that the child didn’t do the usual shriek associated with childbirth.
As the baby was growing up and developing, she didn’t babble and was non-verbal. That didn’t bother us much, as we believed that children developed differently. We enrolled her at a daycare centre in our neighbourhood, but moved her to a different one when we felt that she wasn’t getting love and care.
It was at the second daycare centre where they raised the alarm that there was something untoward with our child as she was completely non-verbal at age three. They recommended that we seek help.
We engaged the services of a speech therapist.
We were referred to a paediatric neurologist who diagnosed our child as being on the Autism Spectrum Disorder (ASD). It was the first time we had heard of the condition. We were devasta-ted and gutted upon hearing the diagnostic results. We asked: “Why us God?”
Google became our friend as we sought to immerse ourselves with knowledge about this mysterious condition.
ASD is defined as a developmental disability caused by differences in the brain. People with ASD often have problems with social communication and interaction, and restricted or repetitive behaviours or interests.
People with ASD may also have different ways of learning, moving or paying attention.
The common symptoms to detect autism in children include:
- Not responding to their name
- Avoiding eye contact
- Not smiling when you smile at them
- Getting upset if they do not like a certain taste, smell or sound
- Repetitive movements, such as flapping hands, flicking their fingers or rocking their body
- Not talking much
The diagnosis led us to a journey to find a suitable school for her. The condition for admission was that the child shouldn’t be on nappies, as was the case with our child. That became a headache for us, and we had to rush against time to get her off the nappies. During that difficult period, her mother and I went through a divorce. But we agreed that we would jointly raise her with care and love.
I bought her a set of panties, and in a bid to get her off the nappies I had to walk around the house in my undies so that she could emulate me.
When Lerato finally enrolled at a new school, she was five and still non-verbal. The school had talented and committed teaching staff who helped our child to gradually learn how to speak. They did a magnificent job, and we remain indebted to them.
Before that she communicated with us through gestures and pointing. Whenever she wanted anything, she would point out whatever she wanted.
The painful part was whenever she wanted something and we were unable to give her what she wanted, due to a communication breakdown. It broke my heart.
Children with autism are known to have a rigid routine. Lerato would insist on eating from a particular bowl and mug. Even today, whenever we are travelling and take a different route, she asks: “What are you doing daddy?”
Children with autism are also known for living in their “own world”. For instance, when we go to clean up my father’s graveside, she calls the cemetery “a garden”, because that’s what she sees lawn and flowers.
Such children also behave differently depending on their spectrum. Lerato is now a chatterbox but talks only to people she knows and is comfortable around. She’s closest to her sister, my wife and I. She also gets along well with my nephews.
This year, we enrolled her at a new school, and it was a seamless transition.
As we observed World Autism Day on April 2 and mark Autism Awareness and Acceptance Month, we need to educate others that autism is neither a disease nor a disability, but a condition. People with this condition need to be embraced and loved. Lerato was the best gift God blessed us with. We love her to bits.
- Bokaba is the acting group head: communication, marketing and events at the City of Tshwane
