A desperate mother’s cry for help

What do you do when your child has a disorder that can make them violent, and the education system isn’t equipped to handle them? Bongekile Macupe talked to a mother and daughter struggling to cope with opppositional defiant disorder

‘I need help with my daughter,” says Debbie*. The teenager has a little-known disorder that severely affects her life. But her mother has been told, “Sorry, we can’t help you, pray to God,” and “Hit the living hell out of her.”

But all Debbie wants is the right kind of intervention to help her “lammetjie”, Cindy*, so she can live as “normal a life as possible”.

Fifteen-year-old Cindy was diagnosed with oppositional defiant disorder (ODD) when she was seven years old. But Debbie says she picked up quite early that “something was wrong” with her child.

“When she was a toddler, if you took something away from her she used to get so cross and crawl until she bumped her head, until she found a place where it hurts.”

Debbie is at her office in Edenvale, Ekurhuleni, where Cindy is hanging out with her best friend. With nobody to look after the teenager, and a history of being kicked out of schools that didn’t know how to treat her disorder, Debbie says she has nobody to look after her daughter. She has lost count of the number of doors she has knocked on, looking for help.

Dressed in black pants, a white V-neck shirt and a black jacket, Debbie is soft-spoken and doesn’t show any emotion when talking about how difficult it has been to raise Cindy.

Debbie has struggled for years to find a suitable school or place of safety for her daughter.  (Hiram Alejandro Durán/M&G)

The disorder has been described as “a pattern of disobedient, hostile and defiant behaviour directed towards authority figures” by Jade Sheen and Jane McGillivray of Deakin University in Australia in a 2018 article in online site The Conversation. “Children with ODD rebel, are stubborn, argue with adults and refuse to obey. They have anger outbursts and a hard time controlling their temper.”

Debbie says that Cindy refused to attend crèche. “One day, when she was three, she took a chest of drawers and threw it right across the room because she did not want to go to crèche.”

Things seemed fine when Cindy was in grade R, until she stabbed a boy in her class with a pencil. She was only six years old. At nine, she started running away from home and school when things didn’t go her way.

“She used to get out of school. We don’t know how, but she would go out. It reached a point where the school said to me they can’t keep her,” Debbie says. “She would disturb the class, she would get out, play and sing and do whatever she wanted to do at that moment. If you say ‘no’ to her, all hell breaks loose.”

According to Sheen and McGillivray, “ODD can negatively impact a young person’s educational options as they struggle to adapt and conform to rule-based school structures. It can affect their home lives, as anger and defiance cause tension in their relationships.”

In 2015, Cindy moved to a school for autistic children in Springs on the East Rand and stayed in its hostel. But her stay ended when she was asked to share a swing with another child. She refused, kicked the principal and broke the hostel windows and doors.

The school said it wouldn’t keep Cindy in the hostel but she could still attend classes. Debbie couldn’t afford the daily commute between Springs and Edenvale, so her daughter again dropped out of school.

“The thing with her is that emotionally she is five years old. If it’s mine, it’s mine. She is very possessive,” Debbie says.

Cindy moved to another special-needs school. But she would also run away by jumping over the fence. Her mother says it was at this point that Cindy started trying to kill herself. “She has tried to drown herself, she has tried to electrocute herself, and she has tried to jump off the school’s roof.”

Eventually that school, too, asked Debbie to take Cindy out. So, in 2016, she didn’t go to school. In 2017, she started home schooling, but even then she would run away. In one instance, her mother instructed the security guard at the home school to handcuff her to prevent her from running away.

“ODD is terrible. She gets violent. She attacks you. She has broken windows at my house, she has broken doors, she threw paint, she has nearly destroyed the house,” says Debbie. “But I love her to bits. I can’t tell you the number of places I’ve taken her to try to get help for her … We can’t find a school for her.”

In desperation, Debbie approached the Germiston children’s court and asked whether it could assist her and put her daughter in a place of safety. Her great fear is that without help, Cindy will meet a wrong man, who will harm her. “She is still young; she can still be taught how to deal with her emotions.”

The children’s court told Debbie that when Cindy becomes violent she must open a case with the police. They can then arrest her and put her in a juvenile facility. Debbie says this isn’t an option. “I won’t get my daughter arrested … I just want to know, how do I help my daughter?”

She’s currently home schooling Cindy, at a cost of R2 000 a month.

She feels that the system has failed her daughter because there is no one willing to help her. Debbie has lost two jobs, because she has had to leave work to find Cindy every time she ran away.

Despite her condition, Cindy is like any other teenager. She listens to nightcore — sped-up electronic music — and she likes art. Cindy she says she wishes she could attend a school where she can do art and music. “Sometimes I really feel lonely and just want to get away … I know my mom listens when I tell her how I feel inside but I just don’t feel like people listen when I speak.

“And sometimes, even when I’m in a room with people, I always feel alone. I think my family … need help together. And I need help with my anger and depression, not the medication help but more like emotional help, because medication just controls you — it does not help you.”

Cindy fidgets with the sleeves of her red sweater and says she’s nervous about being interviewed. “I just think I need someone in my life who would understand what I’m going through.”

Elsie du Plessis, the founder of Miracle Kidz, a Cape Town-based safe house that caters for children with behavioural problems, says it is difficult to find schools for children with ODD, and that those catering for them are privately run and expensive.

Du Plessis is a foster mother to a nine-year-old girl who has ODD and is going to a mainstream school, where she is battling. “She repeated grade 1 and they pushed her through grade 2 and they pushed her through grade 3 and she is still struggling.”

She is now considering putting her child in a special school. “We have a lot of schools that take children with behavioural problems, but they are private schools … [I] can’t afford private schools.”

But even these schools have their problems, Du Plessis says. Most teachers are trained to deal with children with autism and not ODD, even though there is a big difference between the two conditions. And there seems to be little local research on the disorder.

According to the American Academy of Child  and Adolescent Psychiatry, between 1% and 16% of children and adolescents have ODD. Children with the disorder are likely to have parents with a history of attention-deficit hyperactivity disorder, who have ODD themselves, abused alcohol or smoked during pregnancy, or suffer from depression or bipolar disorder.

* Not their real names

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Bongekile Macupe
Bongekile Macupe is an education reporter at the Mail & Guardian.

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