Caring for Gustav

Many people don’t realise how hard it is taking care of a child with special needs. It’s a 24-hour job with no off days and no “me time”, and for 64-year old Johan Bouwer and his wife, Antoinette, this is a reality they face daily.

Their son, Gustav, was born with a mental disability and has needed special care and attention from the time he was born. And although he attends the Alta du Toit Aftercare Centre, his parents, who are nearing retirement, have made countless sacrifices to make sure Gustav is taken care of.

The Bouwers’ story is one of society’s stares and whispered remarks – each a painful reminder that your adult son is seen as an outsider. It’s a story of perpetual parenting and fearing for the future of your child who will never grow up. It’s also a story they want to share so that others in similar circumstances realise they’re not alone.

Mr Bouwer says they need to consider Gustav in every decision they make, be it going for a simple drive out or visiting a restaurant or the mall.

“Taking care of him is a full-time job, as he needs a lot of attention. We never know what he is going to do or how people will react to him.”

Gustav is 31 years old, but he has the mind of a six year old. He finds it hard to control his temper and battles with basic concepts, such as knowing when to stop eating or that it’s considered rude to interrupt a conversation.

Gustav has been at the Alta du Toit Aftercare Centre since 2014. The centre’s marketing and fund-raising manager, Marina van der Meulen, says Gustav is very willing to learn new tasks, but he sometimes struggles to keep up with routines.

“He is physically independent but emotionally very dependent on his parents and authority figures. He quickly becomes discouraged and needs a lot of praise to function,” she says.

Mr Bouwer says they have lost touch with friends and are unable to attend social gatherings or simply enjoy time alone as husband and wife. But he believes Gustav was given to them for a reason, to serve as a testimony for others.

Erica du Toit, public awareness coordinator for the Western Cape Association for Persons with Disabilities (WCAPD), says parents of children with special needs often face many challenges, including economic, social and personal ones.

“A parent is often required to remain at home to care for the child, meaning that there is less income coming into the household. Often, one parent leaves as they cannot cope with the situation, which leaves a single parent in a situation where they can either earn a living or care for their child,” she says.

Ms Van der Meulen says Gustav’s biggest challenge is difficulty with interpersonal relationships and socialising.

“He has a need for acceptance and trusts everyone, but his judgement is limited in distinguishing between positive and negative influences. He has desires to have special friendships, but becomes totally dependent and even obsessive with someone and uses strange methods to keep the person’s attention.”

Ms Du Toit notes that people with disabilities often withdraw from society because of difficulties they have accessing facilities and services. And friends and family don’t always understand or know what to say or how to act around them.

As Gustav only receives a monthly grant of
R1 500, his parents say they have no choice but to continue working this year, despite wanting to go on retirement.

“We need to make sure that Gustav will be taken care of if we are not here anymore. We are his only caregivers and worry about what will happen to him,” says Mr Bouwer.

December 3 is marked annually as International Day of Disabled Persons.