/ 20 April 2012

Special needs an unrelenting fight

Special Needs An Unrelenting Fight

On a Monday morning in November last year, Sandra Wiese brought her black Jetta to an abrupt halt in front of a government school for special-needs children in Cape Town.

Irritated and exhausted, she ignored the torrid heat and rivulets of perspiration running from her forehead over her cheeks and down to her neck. She was tired and soaked but “ready for war”.

Even though he’s finally been placed at school the Wieses realise there is still a long road ahead for them and Francois. (David Harrison)

The middle-aged mother had left work a few hours earlier to visit the education department, but the official she had been told to talk to was not in. She demanded that the security guard, who refused to allow her into the department’s offices, call him. On the phone, the official told her that he could not help her — she had to address the matter with the school in question.

At that stage, Wiese felt as if she was losing her courage: for the umpteenth time she was being sent from pillar to post about the school placement problems of her six-year-old son, Francois.

Wiese is not the crying type. Her friends and colleagues know her as a formidable, strong-willed woman. She does not believe in feeling sorry for herself and is skilled in finding practical solutions to difficult predicaments. But she had spent the past weekend weeping — and her tears had not helped; she had not found solutions to her and her son’s dilemma.

At the reception desk of the Jan Kriel School in Kuils River, Wiese asked to speak to the psychologist who she believed had rejected Francois’s school application.

Normal boy
The blond boy is of normal intelligence, excellent at doing puzzles and can draw at a level far beyond his age. He has a remarkable eye for detail and a sense of humour that keeps his mother smiling for days on end. But, said Wiese, Francois was also “hopelessly lost”. He lives in a world that does not make sense to him because, for most of his life, he has hardly been able to talk.

Francois has one of the most severe forms of a speech-planning disorder, apraxia, that his speech therapist, Bettie Breytenbach, has ever seen.

“He knows what he wants to say but his muscles can’t interpret the signals from his brain,” she said. “It’s a little bit like when you try to change TV channels with a remote control, but someone is standing in front of the sensor. You keep on pressing the button but nothing happens.”

Francois was also on strong doses of the prescription drug Ritalin for an equally serious form of attention deficit hyperactivity disorder, which further impair his ability to concentrate.

Wiese said he also had sensory integration problems that resulted in him struggling to process sensations, including intense noise. For Francois it was challenging to visit public places such as shopping centres. “The hustle and bustle was too much for him to deal with,” said his mother.

He also went “berserk” when eating cold foods, especially ice cream.

Until the age of four, he refused to wear any clothes other than loose pyjamas — the “feel” of tighter-fitting material on his skin caused him to scream “non-stop”, Wiese said.

But despite all that she was convinced that Francois deserved as normal a life and, particularly, education as possible.

Outside the school, Wiese thought: “If my fight for my child results in a raging battle today, let it be.”

Thousands spent on Francois
Wiese and her husband have paid thousands of rands for the psychological, school readiness, speech and occupational therapy reports necessary to apply for his admission. So she waited impatiently in the foyer of the school where she believed Francois would fit in best. The receptionist had told her the psychologist she wanted to meet was not available.

Francois and his classmates are collected by a minibus every day for school. (David Harrison)

Wiese thought to herself: “I’m going to finally lose it.” Desperate, she told the receptionist: “I don’t think you get me. I’m going to wait here until he comes. I’ll camp here for days, if I need to, but I’m not moving until I’ve seen this man.”

When the psychologist finally appeared, Wiese strode into his office and demanded to see her son’s application file. He was sympathetic and understanding, but when she saw that the document was marked with what she interpreted as a large red “rejection” cross, she became near-hysterical.

Wiese screamed: “You will allow my child into Jan Kriel! He will go to grade one — even if he’s 18 with a moustache!”

She had good reason for her forcefulness and refusal to take “no” for an answer — for years she investigated possible schools for Francois in the Cape Town area and had concluded that Jan Kriel offered his only realistic chance of securing a matric.

Since he was two, she had taken Francois to paediatricians, psychologists and speech and occupational therapists for treatment. He also had home tutors — “anything and anyone” she thought could help. But very few recognised her son’s problems; most professionals had no idea what was wrong with him.

It cost her and her husband, Wouter, more than R200 000 and five years of “endless searching” to find two people, a psychologist and a speech therapist, who could diagnose their child’s problem and put medical names to some of his handicaps.

Their medical aid did not pay towards these or for any subsequent costs. Three years ago, the Wieses sold almost all their possessions to pay for Francois’s treatment.

Wiese told her husband: “We have to help our son while he is young. That’s when therapy will make a huge difference. Delaying it will seriously harm his future.”

Faith in Francois
Francois’s psychologist and therapists were convinced that he would do well at Jan Kriel. He had undergone intensive therapy for two years and could talk in short sentences, although they were often unintelligible.

The school follows the normal school curriculum, but its classes are small and trained teachers and speech therapists help children like Francois. But there were only six new places available for grade ones and the competition for them was extremely stiff.

As the psychologist read through Francois’s file, it emerged that one of the ad hoc staff members at his preschool had wrongly said that the boy needed to communicate with the help of computers, assistance that Jan Kriel did not offer.

“If my son had a disability like deafness, things would actually have been easier. For deafness, there are clear steps to follow. You get a hearing aid or a cochlear implant and when your child reaches school-going age, there are schools specially designed for deaf children,” Wiese said.

“But apraxia and attention deficit disorder can’t be fixed by a device. There are no institutions for such children. Your kid has to fit in with learners with other disorders and you can only hope that it works.”

Francois’s problems were a “lightning bolt from nowhere”, Wiese said. As a baby he reached most of his development milestones long before his peers: he could sit at four months and he walked at nine months — “in fact, he ran then”, his mother said.

Francois said “normal little words, like mommy and daddy” soon after his first birthday. But then his speech suddenly stopped developing.

Many doctors and therapists told his mother her son was “just a typical late developer”. But by the age of three, Francois could say only six words and Wiese knew something was “very” wrong. The boy became so frustrated about not being able to express himself that he started to display autistic behaviour.

“The one moment I had this cute blue-eyed baby who charmed everyone, then, overnight, he had changed into a kicking, screaming and spitting little monster,” Wiese said.

“The worst part was that no one could tell me what was wrong with my child. I had no idea what caused his strange behaviour or where to find help.

“As a parent, you feel so incredibly ill-equipped and stupid. You don’t grasp the language that psychologists and therapists use when they talk about your kid. You don’t even know what speech and occupational therapists do. On top of it all, you don’t understand your own child. It’s one of the most desperate, disempowering positions to be in.”

On a high: Francois Wiese receives horse-riding therapy at Jan Kriel School in Kuils River in the Western Cape.

Over the years, Wiese became accustomed to being stared at in public. Francois once became so disturbed by the noises in a grocery shop that he threw himself violently on to the ground. He split his lip and blood gushed all over his face.

On another occasion in a stationery store, when Francois was talking loudly and running up and down, a man shouted at Wiese: “Hey! Control your child!”

Wiese said: “My husband had to physically hold me back because I wanted to hit the man. I have a problem when people judge a situation like that, without knowing who or what your child is. They just assume you’re a bad parent with a bad child.”

One of Wiese’s main reasons for believing that Jan Kriel was ideal for her child was that “judgment didn’t exist at the school”.

Although it did not accept child­ren of below-average intelligence, “there was something wrong with every learner” at Jan Kriel, but all the youngsters were accepted for who they were.

“There were no mainstream children to mock your child there.”

The school psychologist said he would review Francois’s case after he had received new assessment reports. But two weeks later, Wiese heard that the parents of one of her son’s nursery school friends had been told that their son had been accepted at Jan Kriel.

No one had called her. Again, she feared, Francois was not going to get the help he so urgently needed.

Disconsolate, the Wieses continued doing their best for Francois — and it was not only the boy who was suffering.

His 10-year-old sister, Mia, could not participate in any extra­mural activities at school because her brother’s treatment demanded all his parents’ money.

“She always comes second and she knows it,” her mother said. “You can write a book about the impact of a disabled child on a ­sibling. It has turned Mia’s life upside down.”

The young boy’s parents have also lost most of their friends. “They got uncomfortable and irritated with Francois,” Wiese said.

Sacrificing her career
In addition, her dreams of building a business career were crushed; instead, she had to settle for a college teaching job. “I can’t take up employment where I can’t take off school holidays or have to work until the early evenings, because I can’t leave my child with anyone,” she said. “I have no choice.”

Francois’s sports-mad father had to adjust his vision for his son and accept that there would be no rugby or cricket matches on Saturday mornings at the local school in which his child would participate. Francois was unlikely ever to play these sports. Instead, Wouter joined his boy twice a week for speech therapy sessions.

“Everything changed because of my son’s condition. Nothing in our lives was left untouched. But we’ve had to learn to focus on what Francois can do and not on what he can’t do,” Wiese said.

A few days before the December school holidays, the Wieses’ anguish ended — they were told that Francois had been given a place at Jan Kriel.

“We’ve fought so hard for our son, for a chance in life for him,” Wiese said. “I shudder to think what would have happened if we hadn’t devoted our lives to our son.

“So many children like Francois are left to fend for themselves. They end up in mainstream schools where they’re treated as dumb or disturbed kids, without any understanding of their handicaps.”

Francois was struggling with reading and writing in grade one, but his teacher was “amazed by his determination”, Wiese said.

He is in a class of 12 and an assistant helps his teacher. He has also been selected for therapeutic horse-riding classes.

“Without a school like Jan Kriel, my son would have drowned and disappeared. He would never have survived in the mainstream school system,” Wiese said.

But the Wieses are aware that their struggle is far from over.

“It’s a long road and you never know what the outcome of a special-needs child’s education will be until you get to the end of the road. I have no idea what will become of my son.

“We know there’s more wrong with him than what has so far been diagnosed. But I’ve learned to live with that uncertainty. I’ve learned it’s okay not to be in control.

“Francois has taught me to be a softer person — that it’s alright to cry and be confused, because I’m a mother and a human being.

“To hold on to humanity and never to surrender” was one of the greatest lessons she had learned from her “never-ending” ordeal to secure a healthy future for her son.

Mia Malan works for the ­Discovery Health Journalism Centre at Rhodes University