“So it’s very important that the community look out for such children in their neighbourhood to ensure that when they see them walking around unattended they can inform their parents or walk them back home,” Masoka says.
While early diagnosis, finding the right school and getting therapy may reduce symptoms which may lead to improved development and learning, Masoka says she struggled to find a special school for Bongumusa.
“My son was on a waiting list for almost three years prior to finding a public special school for him. There aren’t many autism specific schools, thus finding a school for a child is often difficult. I ended up putting my son in a private special school which was more expensive than government ones.
“More early childhood development centres need to be trained about autism so that they are better equipped to handle children who are autistic and be able to spot the signs earlier. Churches also need to be educated about autism so that they find ways they to accommodate families of autistic individuals within the church.”
To share her journey and inspire other mothers going through the same process, Masoka has written a book, Unbreakable, in which she documents her experiences and how she overcame those challenges.
“I wanted to help educate the public and also share the struggles families often face and how society needs to change and be able to accept and accommodate our children. This book was aimed to empower other mothers in the process.
“It took me 14 years to write this book, which started as a journal. Through this painful and lonely journey, I found healing. My faith in God grew stronger and I realised that it was God’s divine purpose for me to have an autistic son.”
In 2015, she founded Mother of Children with Autism (Mocwa), a support group that allows moms to share their experiences and learn from others.
“We have 360 mothers who are part of Mocwa, a non-profit organisation which is aimed at information sharing, networking and supporting families of autistic children.
“Through this platform many mothers have been able to learn how to care for their children as well as to understand their children’s condition better,” Masoka sai.
mashabas@sowetan.co.za
Helping society learn to deal with autism
Nomsa Masoka was 29 when her son Bongumusa was diagnosed with autism.
Despite being a speech therapist and an audiologist, she thought her son was bewitched.
Autism spectrum disorder (ASD) is a developmental disability that is caused by problems in one’s brain.
People with ASD often have problems with interaction, may struggle to learn, speak, concentrate and have difficulty with social communication.
“My son was around 18 months old when he was diagnosed with autism. I had knowledge about autism, so I could tell that he was behaving like an autistic child.
“He lost his speech, and started behaving strangely – he would flap his fingers and wake up in the middle of the night. He also didn’t respond when I talked to him and refused to eat food with certain textures. As a mother, I suspected that he could be bewitched since his behaviour changed suddenly at the age of 18 months,” says the now 46-year-old mother.
What would follow was a difficult journey of acceptance, searching for answers and healing.
She says she was devastated by the diagnosis as she didn’t want to accept his condition and thought she needed both medical and spiritual explanations for what was going on with Bongumusa, who is now 19.
“In my quest to find healing I visited doctors and also some of the churches. There was most certainly a time when I couldn’t cope but I couldn’t allow myself to break down as I knew my son needed me to be strong for him, so I had to continue seeking help for him.
“There wasn’t much support available at the time for me, especially regarding psychological counselling after the diagnosis. Most people didn’t understand my child, including my family, so it was difficult for them to support me. I got most of the support from my helper at that time since she was staying with me,” Masoka says.
She says looking back, the one thing she would change is to have gone for counselling.
“I would have gone for counselling for myself and my husband and this would have really helped us to share our feelings as we later projected our hurt onto each other without being aware of it and it affected our marriage.
“Most people don’t understand autism [and] they need to be educated about it. I was once told by a security guard to never bring my child to a particular resort due to his behaviour and that a child like mine should be kept at home.
“It was hurtful as I realised he is uniformed and thus there is a need for educating the public about autism so that our children are well accommodated within the society,” she says.
She says some autistic children are not able to speak and may not develop as speakers later in life.
“They need support regarding communication and therefore speech therapy is very important. Due to them being non-speaking, they often get lost and are not able to say where they live.
“So it’s very important that the community look out for such children in their neighbourhood to ensure that when they see them walking around unattended they can inform their parents or walk them back home,” Masoka says.
While early diagnosis, finding the right school and getting therapy may reduce symptoms which may lead to improved development and learning, Masoka says she struggled to find a special school for Bongumusa.
“My son was on a waiting list for almost three years prior to finding a public special school for him. There aren’t many autism specific schools, thus finding a school for a child is often difficult. I ended up putting my son in a private special school which was more expensive than government ones.
“More early childhood development centres need to be trained about autism so that they are better equipped to handle children who are autistic and be able to spot the signs earlier. Churches also need to be educated about autism so that they find ways they to accommodate families of autistic individuals within the church.”
To share her journey and inspire other mothers going through the same process, Masoka has written a book, Unbreakable, in which she documents her experiences and how she overcame those challenges.
“I wanted to help educate the public and also share the struggles families often face and how society needs to change and be able to accept and accommodate our children. This book was aimed to empower other mothers in the process.
“It took me 14 years to write this book, which started as a journal. Through this painful and lonely journey, I found healing. My faith in God grew stronger and I realised that it was God’s divine purpose for me to have an autistic son.”
In 2015, she founded Mother of Children with Autism (Mocwa), a support group that allows moms to share their experiences and learn from others.
“We have 360 mothers who are part of Mocwa, a non-profit organisation which is aimed at information sharing, networking and supporting families of autistic children.
“Through this platform many mothers have been able to learn how to care for their children as well as to understand their children’s condition better,” Masoka sai.
mashabas@sowetan.co.za