Becoming a parent is a life-changing, joyful, and challenging event for anyone, but when you have a child who is disabled, you face unique obstacles that require more patience and compassion because the child’s needs require extra attention and care.
When Nonhle Ngcongo (11) was born, she had a few health issues and was eventually diagnosed with epilepsy, which is described as a disorder in which nerve cell activity in the brain is disturbed, causing seizures.
Raising her has not been an easy task for her mother, Snethemba Ngcongo from Pinetown in KwaZulu-Natal, as she describes the journey as a very emotionally challenging one, but she nevertheless tries her best every day to make it work and remains strong for her daughter because she says it is an unchangeable situation.
Hard times
“Nonhle is now 11 years old, and she has been unable to walk or talk ever since she was born. Therefore, she is unable to go to school or learn in any way.
“I noticed when she was two years old that she might be disabled when she could not sit on her own. It hurts me very badly as a mother knowing that she does not have a future and will just sit on her bed for the rest of her life.”
Ngcongo says there is nothing to enjoy about having a child with special needs, especially when coming from a disadvantaged home and background. She adds that she wishes they at least had access to all the emotional and financial support they need, but appreciates her mother for helping her take care of Nonhle.
“She had epilepsy, and she once fell from the bed, so we had to go to the hospital. We had to use public transport, and it was difficult, but I also cannot afford any specialised transport for her.”
“I always cry because of how hard it is to raise a child with special needs. Her nappies are very expensive and we do not have a stable home. I only support and take care of her with the Sassa grant.”
Snethemba Ngcongo
“I cannot even find a job because no one can take care of her. Even all the treatments I could afford and tried have failed her. I am however grateful that her family understands and loves her, and my love for her will always stand.”
Other siblings don’t get attention
Ngcongo has other children who are younger than Nonhle. Because of their age, she highlights that they do not yet understand the situation, but she tries to give her attention to all three of them.
“I have other children who are still young. They do not yet understand disability and what is going on. They always say, ‘Mama, look at me. I can walk and talk, but why can’t Nonhle, even though she is older than us?’”
Snethemba Ngcongo
She further adds that sometimes older people also do not seem to understand because of how differently they treat disabled people.
“People look at her a lot when we are outside, and some even ask a lot of questions. Some people treat people with disabilities differently, and they sometimes even laugh at them as if they are pretending to be disabled.”
Despite the challenges, Ngcongo is proud of her daughter’s growth and that she is now able to sit on her own. She also hopes that she will one day be able to walk and talk like her peers.
Learning to accept realities
“My daughter has taught me to accept her as she is, not like I wish she could have been. We can’t compare children with special needs with other children because they are not like them. The term ‘special needs’ shows that their needs are indeed special and different.”
Ngcongo says that no one chooses to have a disabled child, so communities and other children must be taught how to love and understand them.
Access and discrimination at schools against disabled children are one of the most concerning challenges faced by parents, says Disability Information South Africa (DiSA) founder Alan Downey. He explains that financial implications, feeling angry, guilty, and overwhelmed are some of the various challenges faced by parents with disabled children.
Support your child
Downey says that even if a child is unable to walk or speak, there are many other ways that parents can support their disabled children. He highlights a few tips that can help parents take care of disabled children:
- Start early. It’s important to start talking to your child about their disability early on. This will help them to understand their disability and how it affects them.
- Be honest and age-appropriate. When you talk to your child about their disability, be honest and age-appropriate. Use language that they can understand, and don’t sugarcoat things.
- Focus on the positive. When you talk to your child about their disability, focus on the positive. Talk about the things that they can do, not just the things that they can’t do.
- Encourage them to ask questions. If your child has questions about their disability, be sure to answer them honestly. Answer their questions in a way that they can understand, and don’t be afraid to get help from a professional if you need it.
- Help them find role models. It can be helpful for children with disabilities to see other people who are living successful lives with disabilities. Find role models for your child, and talk to them about their experiences. If they are interested in sports, this could be an area whereby sportspersons with disabilities can motivate others.
- Emotional support. This includes providing your child with love, support, and encouragement. It also includes helping them to cope with any challenges they may face.
He also highlights that parents should remember that every child is different and that what works for one child may not work for another. It is thus important to find what works best for your child and to be patient and supportive.
What DiSA stands for
“DiSA is a comprehensive One-Stop Access Solution that strives to promote equality for persons with disabilities in South Africa.
“We do this through facilitating easy access to essential information and advocating and providing services to improve access to the built and digital environment, to help to ensure that persons with disabilities enjoy equal opportunities to succeed in society. We provide this through our large network of companies and organisations that we work with,” Downey explains.
“Raising a child who cannot walk or speak can be a challenge, but it can also be a rewarding experience. By providing your child with love, support, and encouragement, you can help them reach their full potential. The children are our future, it all starts with access to education & access to transport. Without this, we cannot have inclusion & equal rights for all.”
Please feel free to contact DiSA for assistance at 021 761 4831, 084 504 9176, or email at info@DiSA.org.za. You can also visit their website.
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