Autism: A mother’s experience

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NO two children are the same and it is wise not to compare children’s milestones; each child is different.

Nevertheless, parents cannot help compare and therefore, tend to worry when a child does not reach his/her milestones at the same time as his/her siblings.

This was the case with Regina Banda, mother to Shumi who, at a young age, showed signs of autism spectrum disorder (ASD), though she was not aware of the condition then.

“My daughter was spot on in her milestones and she loved breast milk, even after I had suffered from cracked nipples and continued breastfeeding, she continued to suckle,” said Banda.

“My son, Shumi, on the other hand, at about three months, refused to suckle.

“I remember trying to feed him, putting him in the breastfeeding position and he would just scream and refuse to suckle.”

Banda said her mother-in-law advised her to introduce bottle feeding and stop breastfeeding.

With people having limited knowledge on autism, Banda said she received varying advice from family members.

“My own mother told me he may have been bewitched and that his brain was closed up in a bottle somewhere,” she said.

“To date, some family members do not really understand his condition and I have taken it upon myself to be his advocate.”

Shumi, said Banda, did not speak at the age his siblings started.

“People were constantly asking how come he was not talking yet, and it came to me as an accusation of failure, I wondered what it is that I had done wrong this time,” she said.

“Initially I was in denial and assured myself that it was normal, people were overreacting.

“His lack of speech was accompanied by tantrums as he felt frustrated that he could not be understood.”

Banda said enrolling him at school came with a lot of stress.

“Shumi was violent. He used to beat other children and it seemed he was not coping with school as the other kids,” said Banda.

“I remember crying one day when I was called twice in a day by the teacher when he had hurt three different children on different occasions. 

“We were asked to get psychological assessment and had to go and apologise to the parents of the children.

“They treated us like we were insane and did not know how to discipline our child.

“They did not even address us the whole time we sat in their house, instead they spoke to the teacher, referring to us in third person, stating the school was now in disrepute because they were allowing mentally disturbed children in the school.”

Banda said: “I remember my heart crashed; I felt humiliated; I felt belittled. I cried.”

“Discovering he threw tantrums also came with time as his routine changed; he was choosy with food, and his late potty training were pointers that we were not aware of.

“And with these came a lot of advice still and judgmental statements of how we were spoiling him, how he lacked discipline, and the stares, they felt like daggers and we would feel helpless when he threw a tantrum in public places and could not calm him down.”

Banda said other people tried to understand and gave good advice, which then led us to seek medical diagnosis as some suggested it might be autism.

“We had to start reading about it and we were then referred to psychologists who stated, again, that he was fine. He needed to be exposed to other kids though deep inside we felt he already was, so we did not understand what that meant,” said Banda.

“The breakthrough came with his ECD teacher, whom he bonded with and she seemed to understand him so well.

“She called us and told us he was making progress; he had learned to report to her if he disagreed with some other children.

“She let him learn whatever he wanted and sat him right next to her desk.”

Banda said: “Shumi would grab her hand, guiding her to the chart he wanted to learn, and she would oblige.”

“He learnt to read, he learnt to write.

“The joy, the relief we felt was amazing and we later learned of assessments being done at Parirenyatwa. We went there and by then, at least we knew what was going on.”

Banda said raising Shumi has come with its challenges but they have learnt to manage.

“We have started to explain to him his condition as we realise he continuously changes,” said Banda.

“He is almost a teenager; the mood swings and sad feelings are persistent. We had to explain to him he has autism and what it means.

“To us, raising Shumi means a continued life of research, of continuously communicating with him so that we understand what is going on with him as this helps us make accommodations for him.

“His siblings are great, and they are his support system and firm base where he feels he can express himself.”

As the world continues to raise awareness on autism this month, family members and caregivers of people with ASD should not be forgotten as they too require support and knowledge on how to take care of themselves and the members with ASD.

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