Every parent experiences challenges when raising a child, but raising a child with special needs presents even greater obstacles because it demands more financial resources, unwavering patience, and can be mentally taxing.
Some parents or couples end up separating because they cannot handle the pressure or challenges which manifest from raising a child with special needs.
IOL interviewed parents who have children with special needs, and they shared their different experiences and how their lives have been affected.
Gugu Radebe* (not her real name), said she gave birth to a healthy child in 2012. She said everything changed when his son suffered a brain injury after a swimming accident.
“He was three when the incident happened, the injury affected his entire mobility, and he can’t do anything on his own. It was devastating but I chose to accept the situation for what it was. Unfortunately, my now ex-husband was finding it hard to accept our child in that condition,” she said.
Radebe said having disabled child presented a lot of disagreements in her marriage.
“At one point he suggested that we take our child to Europe where he can be euthanised, I was totally against it, I refused, why would I want to kill my own child?’’
“When that idea failed, he suggested that we take him to a nursing home and we will visit him whenever we can, I was still against that idea because it felt like I was abandoning my child. His reasoning was that our son will never have a normal life and he will forever be a burden.
“But I refused to see it that way, yes I know he will never develop intellectually and will forever need support but he’s still my son, I can’t abandon him because he’s now disabled, what kind of a mother would that make me?’’
Radebe said her husband distanced himself and some nights he would not sleep at home. As the tension continued to simmer, she finally opted to leave her marriage.
“It was draining, we were no longer living like a couple, it was like we were strangers who hated each other but living under the same roof, it was just toxic. I filed for divorce, and he didn’t even beg me, he also wanted out. Before our divorce was even final, he had already impregnated someone,” she said.
Radebe said she found a helper to assist her with taking care of her son and she also takes him to a special school so that he can be around other children.
“He sends his portion every month as directed by the court, but he doesn’t check on his son.”
Meanwhile, Rebecca Smith,* (not her real name) who has a child with autism, said her marriage went through a lot of strain where most of the breakdown was caused by having a child with special needs.
“It's been the most traumatic experience for our family. Our marriage has taken strain, and we are in the process of separating after being together for 18 years and I do feel that a lot of the breakdown has been due to stress caused by having a child on the spectrum.
“My daughter is 10-years-old and we found out when she was around three that she had learning challenges. She is one of a twin and we saw that her development was slower than her sister's,” she said.
Smith explained that her daughter struggles with focus and memory and still can’t read or write and has difficulty communicating.
Her diagnosis has also affected her social life to a certain degree.
“Our friends do understand; however, people are hesitant to invite us to their homes as she can be quite a handful - which makes it quite a socially isolating experience. I am very straight forward with telling people that she's on the autism spectrum but generally our society is not that accepting,’’ she explained.
Smith said her daughter has been to four schools because of various issues.
“It's the teachers either cannot cope with her or there has been bullying.”
Moreover, Smith said there was inadequate support in the country regarding children on the spectrum.
“It is a constant worry as to what is going to happen in a few years' time when she has to leave school... I think that culturally we tend to hide these children and not integrate them into society.
“There needs to be schools that offer trades and skills development and investment into industries that can support them, like tax incentives for companies who employ them.
“In the UK there are communities where they live together with carers - which we know will never happen here, however, in an ideal situation that would be the answer,” she added.
Another couple, Amogelang Mbatha and her partner Mosira Motsatse, have a son who fell ill with bacterial meningitis in November 2023 but survived after a 3-month stay in hospital.
The couple said they have accepted that their 2-year-old might have limitations when he grows up and they are prepared for the challenges lying ahead.
However, their biggest challenge was getting the facility to help their child recover.
"The biggest challenge has been trying to find a facility that offered comprehensive rehabilitation for children. Unfortunately, even in the private sector, South Africa's health system still lacks even the most basic therapy sessions at one facility.
"Even though we have good medical aid, we still have to pay out of pocket for a lot of the therapy sessions our son needs to fully heal from his long stay in hospital."
"We never anticipated that we would struggle to find a rehab centre that offers everything he needs. If we were living in the UK, a lot of the health services he needs would be covered by the public health system, but in South Africa that's not the case, and even when you resort to private healthcare, the facilities are inadequate for the needs of children with neurological difficulties due to infection or birth trauma," said Mbatha.
IOL News