"Raising my autistic son"
Speech therapist and audiologist Nomsa Masoka shares her experience of learning that her bright boy has autism and how she and her husband has adapted to their new life.

"I’m a mother of a 6-year-old boy who was diagnosed with autism when he was 3 years old. This was the most life-changing experience for me. Nothing could have ever prepared me for the challenges which were to lie ahead of me as a mother and a professional (speech therapist and audiologist) who works with children with this condition.

"It all started with my son getting fevers and recurrent middle ear infections. He started to loose his interest in people and toys and was starting to act as if he was deaf when spoken to. Every day he drifted apart from me. He started to reject my touch, hug and kisses.

"I started to wonder what was wrong with him or me. The once vibrant little boy who used to fill my life with so much joy brought me fear, hopelessness and helplessness. His behaviour seemed to get worse by the day and I began to wonder what was to follow.  

"He started to find pleasure in the meaningless stuff in life. He who would pick up a twig and run around with it as if it were an aeroplane... and this would happen for hours non-stop. He also grew a fascination with flapping his hands and starring at his fingers as if he was counting them.

"As he continued with this behaviour, one thing which came to my mind was that my greatest fear had become reality, my son had autism. I wrestled with this thought in my mind, I knew I had studied about this condition as a student but I didn’t remember anywhere in the literature where it was mentioned that some of it could be a late onset. Therefore I tried to deny any possibilities of this monstrous condition attacking my child.  

"I had watched my son master all his developmental milestones so perfectly that there was no slight hint of anything going wrong. I remember how he sang a happy birthday song at the age of 1 year, the sight of his video clips and photos of how he was a bright little boy who could blow his own birthday candle and count up to 10. Those were the last memories of a healthy little boy I had imagined him to grow up to be.  

"Then what took his mind away? What kind of illness is that which took away my son’s ability to think, talk, play, interact and enjoy life like any other child when he still has all his senses and physical make up intact?

"No one knows what causes it, how it can be treated and where it comes from. Professionals speculate about its causes and treatment but there is not yet any drug or treatment technique which can cure this monstrous condition, which has a tendency to affect more boys than girls.

"Some overseas professionals have seen this as a money-making opportunity as they play on parents' lack of insight and desperation. They make promises to make it better by telling them what food types to eat and avoid, but it is all in vain for some of the desperate  parents.  

"I still remember the date quiet well, 15 March 2007. I remember how I went to a developmental paediatrician already with a diagnosis in mind but only needing her confirmation.

"However for my husband it was different as he had denied my earlier speculation but was only prepared to hear it directly from a specialist as he is one himself. When the neurodevelopmental paediatrician  confirmed my suspicion, it was devastating to me, but not as much as it was for him.

"In the 13 years that we had known each other, I had never seen him in such pain. We just couldn’t comprehend the diagnosis of our son at all. The reality was that much as we had diagnosed patients and had mastered the skill of delivering bad news, we were not at all in a position to hear them told to us. I thought maybe if we had only very little knowledge about the condition this could have been an advantage as I wouldn’t understand the intensity of what I was going to deal with.

"One thing about this condition is that much as we are educated and better equipped to handle it, it threw all our knowledge out the window and we had to be patient, humble and take it one day at a time. We had to open our hearts and minds to raising our son with his special needs and this meant that we had to make certain sacrifices and changes in life.

"We were to live a life of being woken in the early hours of the morning – nights are not different from days as my son would wake up and sing in the middle of the night.

"You know how before being parents we long for the moment someone calls  us 'mama' or 'papa'. But this meant that we had to make peace with the possibilities that this may or may not come true. Those things which we take for granted which other normal developing children do such as eating, dressing, playing, talking, interacting etc. become greatest challenges when raising a child with autism.

"We went through days of him refusing to eat something because of its colour, texture and taste etc and days of eating the same food for breakfast, lunch and supper non-stop. Who cares when the label or package of a yoghurt, crisps and or sweet changes? But for a child living with autism this can be the greatest stressor as they are resistant to changes in the environment and want the sameness in their environment or most things they do.  

"Yes, there are challenges indeed but we have learned to make peace with his diagnoses and try to adjust and adapt to his needs. We go shopping at the same mall, eat at the same restaurant and stick to the same routine on weekends. We had to cut down on friends and our social life has taken a toll but we are adjusting to parenting this special child that God has given us.

"It is not about how educated we are to deal with his problems and what knowledge we can impart to him but the lesson to me is how he has transformed us into being better parents and professionals who are better skilled to understand and sympathise with those we come across. My son is special in his own way and I had to learn to love him and accept him just as he is."
Date 16/01/09

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