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Autism: How parents can cope

Parenting
Mother tells of being in denial when daughter was diagnosed, writes Nomaswazi Nkosi.

Parents of children with social conditions should educate themselves rather than be in denial which is detrimental to the child.

That’s the message Christinah Maragelo wants every parent to know after going through her own bout of denial when her daughter was diagnosed with autism.

In honour of Autism Awareness Month, Christinah who lives in Pretoria east, is sharing her story of how she dealt with a child with a social condition in order to inspire other parents, particularly African parents.

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Christinah Maragelo and her daughter, Botselo Maragelo who was diagnosed with high-functional autism at the age of 3.

“I want Africans to know about this and stop being in denial about this. A lot of the time when their children show signs of a social condition, they’ll start saying they were bewitched or hide their children because they are scared of what people might say,” Christinah said.

She said that after doing the same thing, she eventually began realising she needed to embrace her child’s condition in order to parent her better.

Botshelo Maragelo was only seven years old when she was diagnosed with high-functional autism.

“I started noticing that she was slower than other children and by the age of three she wasn’t talking,” Christinah said.

Her cousin who was a psychologist advised she should do some research on autism. And when she did, she realised that her daughter had the symptoms described.

“Even after that I was still in denial about it.”

After a while she took Botshelo to her paediatrician who referred her to a psychologist. Tests were conducted and the girl was diagnosed with high-functional autism.

“It is a mild form of autism. So she can cope with certain things. Her speech is delayed but she can function without medication,” Christinah explained.

She said that prior to the diagnosis she had no idea what autism was and she probably would have never known about it otherwise.

Her denial continued and she was unable to cope with her daughter’s diagnosis, or how to change her parenting style to meet her daughter’s needs.

“Every mother wants a child who is an extension of her. You don’t want to hear that your child is not normal.

“It really took me years to accept her condition,” she admitted.

“Three years later (after the diagnosis) I realised I was denying my child what she needed and what she deserved.”

She thanked her parents for fully supporting her and her daughter during this trying time.

Once she fully accepted her daughter’s diagnosis, Christinah took to the new challenge with fervour, even meeting with other parents who were raising children with autism.

Her daughter is now nine and is developing well with the help of the teachers at Unica School in Pretoria.

‘The Fearless Mother’ is a book written by Christinah Maragelo who chronicled her difficulties in raising a child with autism.

She has since written a book called The Fearless Mother with which she hoped to encourage parents on how to raise children with social conditions.

“The book is about my experience with raising a child with autism but I think any parent can relate to it. We have received a lot of positive feedback from parents who don’t have children with autism,” she said.

According to Autism South Africa, autism spectrum disorder is thought to have a genetic component which results in atypical neurological development and functioning.

A lot of research is being done to try to find the cause of autism, but as yet there is no definite answer.

They describe autism as a developmental disability and people with the condition may communicate, interact, behave, and learn in ways that are different from most other people.

Possible signs of autism:

  • No babbling by 11 months of age
  • No simple gestures by 12 months (eg, waving bye-bye)
  • No single words by 16 months
  • No two-word phrases by 24 months (eg, “baby sleeping”)
  • No response when name is called, causing concern about hearing
  • Loss of any language or social skills at any age
  • Rarely makes eye contact when interacting with people
  • Does not play peek-a-boo
  • Doesn’t point to show things he/she is interested in
  • Rarely smiles socially
  • More interested in looking at objects than at people’s faces
  • Prefers to play alone
  • Doesn’t make attempts to get parent’s attention; doesn’t follow/look when someone is pointing at something
  • Seems to be “in his/her own world”
  • Odd or repetitive ways of moving fingers or hands
  • Oversensitive to certain textures, sounds or lights
  • Lack of interest in toys, or plays with them in an unusual way (eg lining up, spinning, opening/closing parts rather than using the toy as a whole)
  • Compulsions or rituals (has to perform activities in a special way or certain sequence; is prone to tantrums if rituals are interrupted)
  • Preoccupations with unusual interests, such as light switches, doors, fans, wheels.

* Source: Autism South Africa

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