For any parent, the birth of a child is a special event. In that first, resounding cry, hope, promise, and potential echo to the heavens. A new life has been born, and anything and everything seems possible.
But for some parents, the euphoria will be weighed down by a diagnosis that means extra challenge, extra vigilance, and extra care. “Special needs.”
Whether the impairment is physical or intellectual, whether it’s autism or cerebral palsy or a rare congenital disorder, a child with special needs can place great strain on family, relationships, and resources.
But living with a lionheart, as Johannesburg writer Stacey Vee calls her eight-year-old son, Travis, can be an adventure, an education, and an everyday reminder that love conquers all.
Travis has a one-in-6-million brain malformation called septo-optic dysplasia, which means he is autistic and is unable to walk or talk yet.
“The first signs were that he was sort of a velveteen rabbit, flopsy, he had no grip,” Stacey told broadcaster David O’Sullivan in an Iris chat session for BrightRock.
“His eyes didn’t seem to focus very well on objects. We thought that he would grow out of it. We didn’t want to believe it until the doctor showed us.”
As the oldest in a family of three boys, Travis has been a handful for Stacey, and she finally took the big step this year of placing him in respite care at Oakhaven in Midrand.
“At first I was quite sad about it,” says Stacey. “Then I realised I was putting together a well-considered plan for his future. Travis is receiving the best care I can afford. It’s the best thing for him and for our family.”
David, whose eldest son, Michael, 11, is autistic, knows all too well the importance of seeking happiness for a special needs child.
“I want to try and allow Michael to blend into society,” he says. “I don’t want him to fit in, he’s always going to be the square peg in the round hole. If he can just blend in, and find a niche for himself that is comfortable.”
Raising a child on the autism spectrum can be frustrating, given their unique and often unpredictable ways of perceiving and reacting to the world around them.
David remembers admonishing Michael after a particularly tough day at school, and after making sure he understood what he had done wrong, hearing him say, from out of nowhere: “Do tunnels have restaurants?”
Children with special needs have an endless capacity to take you by surprise, agrees Margot Bertelsmann, whose son Richie 5, has spina bifida. He attends a mainstream school, and refuses to accept the perceived limitations of his differentness.
“He wants to do soccer lessons,” she says. “Soccer is probably not going to be his sport. But no, soccer it has to be. It’s good for the other children to experience him, so that he stops being this monster in the corner, and that he enjoys the breadth of human experience.”
For David, the tough days are overshadowed by the glow of an extraordinary achievement, such as Michael standing in front of his school and reciting a children’s story from memory.
“We celebrate, we cheer,” says David. “That was one of the biggest moments for us. But still, he can’t tie his shoelaces.”
Margot, who describes the sense of loss a parent feels at the realisation that there are some things their special needs child will just not be able to do, remembers Richie first becoming aware of people staring at him in public.
“When he walks, he lurches, like a zombie,” she says, “and he said to me, why are people always looking at me? I turned to him and said, Richie, it’s because you look different, and people notice that. They are always going to look at you. And you are also such a handsome boy.”
For Val Witt, principal of Crossroads School in Johannesburg, that sort of affirmation is a vital part of the process of creating a better world for special needs children, and their parents.
“A lot has changed,” she says. “People are now much more aware of special needs. For me, the quality of every single child is in the value they bring. The stigma is other people’s issues, and the more we educate, the better.”
*For more on the challenges and joys of living with special needs children, watch the full BrightRock Iris session.
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