Seven-year-old Yola Ndabeni used to live behind locked gates. He was violent. His mother used to hit him because she thought he was naughty. This made him scared of her when she walked into a room.
“I am happy about where he is now. We can communicate now and the violence is no longer there,” says Faith Ndabeni, Yola’s mother, fighting back tears.
At two years of age, Yola was not speaking. When Ndabeni enrolled him for speech therapy at the Charlotte Maxeke Academic Hospital in Johannesburg, the speech therapist told her that she had picked up signs of autism and referred him for further assessments. At three years of age, Yola was diagnosed with autism.
“I didn’t know there was something called autism. So I used to be scared, thinking, ‘What am I going to do with this child?’,” says Ndabeni. “He was violent. I used to lock the gates so that he doesn’t go outside [into the street] because he used to hit other children.
“Even when we went to someone’s house, he would just open the fridge, go jump on top of the bed and, by the time we left that house, he would have entered each and every room in that home.”
Ndabeni could not take her child to a daycare centre because of his disruptive behaviour.
“I used to hit him because I thought he was a naughty child. It came to a point where he was scared of me when I walked into a room because he knew I would hit him,” she says.
Her troubles did not stop once Yola was diagnosed. Although the hospital referred them to the Johannesburg School of Autism, they were told at the school that they needed to go to the provincial education’s district offices to enquire about a space at the school. At the district office, Ndabeni was told that her son would be put on a waiting list.
“At times they would not even pick up the phone at the district office,” she says.
The school eventually admitted Yola when he was four years old, although the district offices had not given the go-ahead.
“Now he is very calm; the violence is no longer there. He can communicate. I have seen so much difference since he started at the school. He can even write his name,” Ndabeni says.
“It has been hectic, but I’m happy with where he is. And it is because of the early intervention that he received at the school.
“And I think if he didn’t get that intervention he would still be the same child that I didn’t understand,” she says.
Ndabeni and Yola’s story is not unique for families with children who have special needs. There are not enough special needs schools and many children are placed on waiting lists for years.
According to a Human Rights Watch report compiled in 2015, about 900 000 children in South Africa aged between five and 18 are living with disabilities and about 600 000 of these children are not in school.
At the opening of the first autism school in Soweto in 2016, Gauteng MEC for education, Panyaza Lesufi, said parents could wait between 18 months and five years before their child was placed at a special needs school.
Trying to bridge this gap, Autism South Africa (ASA) will next month open Bright Kids, a pilot early childhood centre at its head office in Parktown, Johannesburg.
Bright Kids will be for children between the ages of two and seven who are suspected to have autism, or any other developmental disability, and who are either on waiting lists at schools, or simply have nowhere else to go.
“I was shocked when I first put up the ad on our Facebook page. Literally within 14 minutes, we had over 50 emails from people wanting to know more information. And so it just shows you the dire need that is out there,” says ASA director Sandy Klopper.
Bright Kids has two classrooms and there won’t be more than seven children in a class. Because the programme is still being pilot, Klopper says they will not be adding children but will look at expanding the centre gradually into other areas in the building.
She adds that they are starting with the pilot to ensure the model works before they roll it out, which ASA hopes will be throughout the country in the coming years.
She says the centre will accept children who do not have a proper diagnosis and enrol those whose parents have concerns about their development, from delayed milestones to delayed speech.
Most parents get a diagnosis when children are seven or eight, but early intervention is vital, she explains.
“We always say to parents, it’s never too late for intervention but early intervention is vital … And it improves prognosis for the rest of their lives.”
The curriculum will be play orientated, because children learn through play, she says. The curriculum will include emotional regulation, social skills and independence skills.
Several teaching methods will be used, with a specific focus on the unique needs of the child. School fees will be R1 500 a month.
Klopper says the centre will also assist in getting school placements for children between the ages of five and seven.
She says ASA, Down Syndrome South Africa, the National Council for Persons with Disabilities and the South African Disability Alliance are campaigning to try to collect the names of all those children with disabilities who are not attending school.
ASA has been collecting names since 2016. Many of the children are still too young for the schooling system but there are also 16-year-olds who have never been to school. In some cases, parents have been trying to get them into school since they were three, without success.
“And so I suppose those are the case studies that really made me realise that there is a tangible need,” Klopper says.
“It’s all good and well to say, ‘Oh, there are thousands of children with disabilities that are not at school’. But who are these children and what are their stories? And that has been a real eye-opener for me.”
Klopper says some of the children are turned away at schools because there is no transport or they are not toilet trained.
“Toilet training for children with disabilities generally takes longer to develop.
“So [at] about seven, eight, nine years old, a lot of them are not toilet trained, but then the schools are turning them away because they can’t use the toilet independently. It’s terrible. Even special needs schools won’t take our children unless they are toilet trained.”
Bright Kids will offer tangible, hands-on and direct support to families who have been struggling, she says.
ASA is also running a caregiver skills training project with the World Health Organisation, which will reach thousands of children by upskilling their parents to be interventionists.
“We try all things to make sure that we can have a greater impact where we are needed,” she says.