From tears to wonderful – a mother shares her story on raising a child with autism
A mother was devastated when she learned her daughter was autistic. With support and education raising her daughter is challenging, but ‘wonderful.’
“The first thing that made me realise that something was wrong is she started walking later than the other kids. She walked at age two,” recalls Cindy Gasa. “Then at the creche they called me and said she wasn’t growing at the speed of other kids.”
Her daughter Somthanda “was not even speaking a single word,” so the creche referred her to a doctor.
“I remember that day like it was yesterday. It was the 29th of May 2019, at the Children’s Hospital in Durban,” said the 27-year-old from Hammarsdale in KwaZulu-Natal.
At five years old, Somthanda, was diagnosed with autism.
“The doctor ran some tests and gave us the diagnosis. It was a shock for me as a young parent cause I automatically blamed myself,” she said.
Autism, also known as the autism spectrum disorder (ASD) is “related to brain development that impacts how a person perceives and socializes with others, causing problems in social interaction and communication,” according to a definition by the United States-based research organisation the Mayo Clinic.
“I remember that I cried for a while and it was really hard,” Gasa said of the diagnosis. “At that time I didn’t know much about autism so I didn’t know what to expect. From then, she was transferred to the South Beach Children’s Hospital to begin tests,” she said.
Somthanda is non-verbal and communicates with actions. Gasa, a single mother, worried about the challenges her daughter will face. Children with autism often require high support and high intensive intervention.
Autism and communication
ASD is characterised in varying degrees, according to Autism South Africa (ASA). These include difficulties in social interaction, impaired verbal and non-verbal communication, repetitive behaviours as well as differences in sensory perception. Autism is complex condition and is difficult to understand in each case.
She is concerned that there will be things that may bother Somthanda and it would frustrate her that she is not understood. When she needs something and her mother and family cannot understand her, she could have an emotional meltdown and cry for hours, said her mother.
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For Gasa, joining a support group with other parents with children with autism helped immensely.
“I only joined autism groups after my daughter’s diagnosis to get support. Also I learned to accept the way she is which helped me a lot to overcome this diagnosis.”
She said she was “lucky” because she had a good support system through her family and friends. Her loved ones also knew little about autism in the beginning, but they too, researched and learned more about the disorder.
“I’ve been very touched by the support, it means a lot even though in the community. I have encountered some people who were closed minded and would asked me dumb questions like is she really brain dead and some would ask if she would ever have a career or get married but I choose to ignore those silly questions and look at the positive in every situation. You can’t completely change a grown person’s mindset,” said Gasa.
The benefit of specialised education
Somthanda has started attending a special needs school and her mother is already seeing an improvement. She attends the Indalini School for the Deaf in Richmond, where she is a boarder. The school, which has a specialised unit for autism, has occupational and speech therapists who have taught Somthanda to communicate more effectively.
On the family’s visits, they have even seen her adjust to COVID-19 restrictions.
“I’ve seen a huge change in her ever since she began going to school. When she came back a few weeks ago to visit, I was happy to see that she can now wear a mask without making it a big issue,” said Gasa.
“The discipline is also evident, she can now listen when you talk and the tantrums have ceased. In regards to social distancing though, she is an affectionate young lady so she loves being next to us. I think at school, she is able to follow the rules,” said Gasa.
A state-run school, Gasa pays R600 a month and finds it far more affordable than private institutions.
“It does help if an autistic child attends at a school which is specifically for autistic children because that is where they are able to learn properly and finds educators who are well trained for such jobs,” said Mary Moeketsi, spokesperson for ASA. “From those schools they can even benefit in augmentative and alternative communication.”
Despite these benefits, these special needs schools are often inaccessible, said Moeketsi. Private schools for children with autism are expensive and there are a limited number of government-run schools.
“We have written letters to the Department of Health and Education pleading for such schools but unfortunately the government is dragging its feet,” she said.
Raising a child with autism can be ‘wonderful’
Somthanda’s development has come with many challenges, says Gasa, but it also been “wonderful.”
“Raising a disabled child can be difficult I know but as a parent you need to know that it is not your fault, you’re not responsible for your baby having any kind of disability. What you have to know is that your child needs you more than ever so parents need to be there for their kids,” she said.
“No parent should be ashamed of their kids, whether autistic or not. Your child deserves a chance to live a normal life.”—Health-e News