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CHERYL – A STORY WORTH TELLING

18 May 2016

Cheryl Leonie van Rooyen was born on the 15th of May 1996 at the Unitas hospital in Centurion and weighed 2.85 kilogram. Cheryl was born into a big family who loved and supported her from day one.

This is Cheryl’s story, a journey which reflects her amazing determination to overcome the negative effects of a syndrome that she was born with. This narrative is a compilation of the family’s experiences captured by her loving granny, parents, sister and other family members. The analogy that it takes “a village to rear a child” is so true in this young girl’s courageous journey.

Cheryl’s story starts off as any other child’s, with a normal pregnancy for her mother, Mabel. Her arrival was eagerly awaited by the whole family and especially big sister Meggie. Meggie is mentioned early in this story as she is Cheryl’s biggest advocate, friend, mentor and guardian angel. This amazing young girl was just as much affected by her little sister’s disabilities, yet an inner strength allowed her to be the big sister that Cheryl needed.

Cheryl was born by Caesarean section she met all the normal development milestones; for example: at about eight months she started to crawl and was able to walk at the age of thirteen months. She was a happy, bubbly little girl with beautiful big eyes that showed so much expression. She would delight her family by widening her eyes and bursting into laughter. When she was a year old her parents took her to see a paediatrician for a standard check-up. At the time her only ailment was a slight cold. After examining her, the doctor made the diagnosis that Cheryl’s head was too small for her age and recommended that she should see a neurologist. The neurologist examined Cheryl but wasn’t concerned.

At the age of two years Cheryl was taken back to the paediatrician, Dr du Toit, who again stressed his concern that her head was too small and referred her to the neurologist again. After taking an x-ray of her skull, it was found that she has “copper beating” on the inside of her skull, which is an indication of Crouzon syndrome, a cranio-facial deformity. This meant that her skull had insufficient space for her brain to develop. “Copper beating” is caused by raised intracranial pressure which results in the brain leaving an impression on the soft inner skull. To validate the severity of the syndrome, Cheryl had to undergo a relatively minor surgery immediately where a pressure gauge was inserted into her skull to determine the intracranial pressure. The results reflected that the pressure was extremely high and that this condition could only be fixed by an operation. Her skull cap was surgically removed to create false sutures, and plates and screws were attached to her little skull. The procedure aimed to create additional space for her brain to develop.

Dr. J Mennen, the neurologist who was to perform the operation, ordered special soluble screws and plates to create the false suture. The neurologist also referred Cheryl to Prof. Butow, a Maxillo-Facial & Oral Surgeon who evaluated Cheryl, indicating that she would need Maxillo-Facial surgery in her late teens. She was also referred to Dr M Lippert, a Paediatric Neurologist who indicated that Cheryl would need long term speech and occupational therapy.

The need to involve all these specialists in Cheryl’s care was extremely timeous and this, together with the added complication that Cheryl had to be 100% healthy to prevent any virus from going into the bones during the operation, delayed the Cranio-Stenosis operation considerably. Eventually at the age of three she underwent a 5 ½ hour cranial stenosis operation on 2 June 1999 (Election Day). The post-surgery recovery was traumatic for both Cheryl and the family. Cheryl’s little face was distended and her eyes were swollen shut. The three year old could not understand what was happening to her. This perception of constant darkness caused her to panic, and she kept telling her visitors: “I am finished sleeping. I want to wake up now!”

It broke her aunt’s heart when she walked into the paediatric ward to visit. It was outside visiting hours, but she was hoping only to peep into her sleeping niece’s room. The exhausted parents had been sent home. However, she was met by Cheryl’s sobs (ummm screams) and the nursing staff’s desperate efforts to calm the terrified child. Instead of being shown away, the aunt received a warm welcome and was offered a chair at the bed. With tears sliding down her cheeks, Aunty fed her trembling, but obviously terrified, niece a meal of mashed potatoes. In between small sobs and a running nose little Cheryl said in a serious voice…”I love mashed potato”.

At the age of 5 years and 8 months Cheryl’s parents, Dean and Mabel, took her to the University of Pretoria to be tested and for advice on her future schooling. After analysis of these tests they received verbal feedback from the psychologist, a student completing her Master’s degree in Psychology. She informed Dean and Mabel that Cheryl would never be able to read and write, neither would she be able to attend school. The distraught parents refused to accept this prognosis and requested a meeting with the master student’s mentor to discuss a way forward in terms of Cheryl’s education. The final report recommended Zenith academy, a school for children with autism. It was also recommended that Cheryl be taken for long-term speech and occupational therapy, which she started at the age of 3 years and 6 months. She went for occupational and speech therapy twice a week until her early primary school years. The family wasn’t sure why she needed speech therapy -because she had no problem communicating.

By the age of five Cheryl had been attending swimming lessons for more than a year. However she did not learn to swim. Her granny suggested using her own aerobics instructor, Mary-Ann Henning, and after one term Cheryl could swim like a fish. She still enjoys it to this day.

Cheryl’s parents were optimistic about her future and decided to enrol her in a mainstream school where the grade 1 teacher had insight into working with children with learning difficulties. At this time the therapy, and doing homework attached to the therapy, placed a further burden on Cheryl, because this limited the time that she had available in the afternoons for school homework.

While all this was taking place her sister Meghan, four years older than Cheryl, supported her wherever she could and even acted in a parent’s role during the afternoons at aftercare to assist the aftercare teachers. Meghan received academic prizes every year from grade one to matric and still managed to put a lot of energy into caring for Cheryl.

In grade one it became clear that mainstream school was problematic for Cheryl and her parents were advised that she should complete grade 1 in this school, and then be transferred to a remedial school. The next year Cheryl was enrolled at New Hope, a remedial school, where she repeated grade one.

Cheryl attended New Hope school from 2004 till 2008. She was picked up by the school bus early in the morning and was dropped off in the afternoon at Lyttelton Primary School’s aftercare. Meghan was a constant support for Cheryl at aftercare, protecting her and standing up for her against the other children who could be cruel and mean to someone who looked a little different. Meghan looked after her little sister, until she graduated from primary school and went to high school. Thereafter, Cheryl could no longer use the Lyttelton primary aftercare facilities. Cheryl was then dropped off at her grandparents’ home every afternoon. Cheryl’s school hours at New Hope, together with the hours of travelling from Centurion to Menlyn and back in the afternoon, were lengthy and there wasn’t much time left in the day for Cheryl to do her homework. As a result, the family considered putting her into an alternative remedial school.

In 2009 Cheryl moved to a remedial school close to home (we would not like to mention the school’s name). From the onset she was unhappy at this new school. Her biggest issue was that she had no friends there. We comforted her in the beginning by telling her that she would make friends once they got to know her. However, Cheryl would have a friend for a day or two and then one of the other children would negatively influence the friend, causing them not to play with Cheryl. There were various reasons given for this, for example that she was ugly. There were even times when the children ganged up against her and excluded her from joining them during break time. The principal, teachers and psychologist were not very helpful in addressing the matter or encouraging the other children to include Cheryl; to accept her differences and to understand that she was as she was because of Crouzon syndrome.

Cheryl’s parents discussed this issue with the principal and the school psychologist but instead of resolving the situation in a professional manner, the staff informed the distraught parents that Cheryl was the one at fault. The psychologist’s comment was: “This child walks around during break with her hands behind her back and that is abnormal behaviour”.

At times she would be sitting outside by herself, crying, and the principal would tell her to go to her office. Then she would reprimand her for feeling sorry for herself. Some of the teachers took pity on her and allowed her to talk to them about things that were bothering her. Subsequently the principal then told her that she wasn’t allowed to be so familiar with the staff. All of these incidents carried on over a period of three years. The principal also advised the parents to take Cheryl to Dr Schuler, a psychiatrist, who prescribed an anti-depressant as well as Concerta to increase concentration. However, this did not make a huge difference in Cheryl’s life at the remedial school.

Fortunately for Cheryl, she had other young people in her life, like her sister and many cousins who were always willing to talk to her and play with her. They treated her with love and dignity, which made going to school more bearable. She looked forward to spending time with family at the grandparents’ house after school. Despite being so unhappy at school, Cheryl managed to pass every year...

Cheryl’s parents tried various ways to help her to have a normal education and childhood:

Finally, at the end of Grade 8, Cheryl’s parents discussed their predicament with Mrs Hoffman, the principal of The Way Christian School, which is a mainstream school. Cheryl’s parents shared Agatha Coetzee’s psychometric evaluation of Cheryl as well as the problems Cheryl had with fitting in socially at the remedial school. The teachers at The Way had a meeting and decided to give Cheryl a chance. When her parents told the principal at the remedial school about this, she indicated that Cheryl would not cope at The Way and that she was not prepared to take Cheryl back if things did not work out at The Way. She even went as far as phoning the principal at The Way to inform her that Cheryl would not cope. The principal at The Way informed the parents of this call but said that she was still willing to take Cheryl in anyway.

This was the big break that Cheryl and her parents were praying for – to attend a school with Christian and leadership values such as putting the needs of others before your own. This excellent form of leadership is practised enforced by the school principal, and reinforced by the teachers, prefects and other school leaders.

In 2012, at age fifteen, Cheryl started her schooling at The Way Christian School. Her school teachers and fellow scholars took the time to understand her, which enabled her to learn and grow in her new environment. Through the loving, understanding, caring Christian leadership practised at The Way Christian School Cheryl was not singled out as a trouble maker. Instead the leadership at this school strived to understand this new girl (who was painfully honest). Cheryl’s brutal honesty (which is a symptom of the effects of the Crouzon Syndrome) was difficult to handle by her fellow students and was a challenge for the teachers to mediate. Cheryl’s parents were called in to meetings with the teachers to discuss Cheryl’s difficulties. Unlike at the previous school that Cheryl attended, there was always a positive outcome.

Cheryl’s schooling needs had been addressed. However, there was still a need for surgery as indicated by Professor Butow, the Maxilla-facial specialist. As mentioned previously, her parents were told that she would need another operation in her late teens to reconstruct the middle face and have her cheekbones moved forward so that there would be more space to improve her breathing.

At the age of seventeen she saw an orthodontist because there was a problem with her jaw. She had an under bite, which required braces. The orthodontic treatment had to be aligned with the facial maxilla operation. Therefore, fifteen years after her first visit, Cheryl revisited Professor Butow and the operation was scheduled for June 2014.

With the help and support of the principal of The Way Christian School and her staff, Cheryl was able to write the June exam with the least disruption to her grade 11 studies. She has great difficulty handling change and was very afraid of having this operation, but her family and her teachers were there to reassure her that she would be able to handle this operation and managed to get her to concentrate on her studies and not dwell on her fears. Despite all this upheaval, she managed to pass the June term with a 60% average.

During the four years she spent at The Way there were incidents that upset her, but if she had said something wrong she was reprimanded in such a way that she understood that what she had said wasn’t acceptable. However, her self-worth was never compromised. She wasn’t pampered and treated differently to the other children and had to work hard for everything she achieved.

When the leaders were chosen for Grade 12, she also hoped that she would be chosen as one of the leaders. Unfortunately she wasn’t chosen and she was very upset, but all she said was that she felt bad that she was the only girl who hadn’t been chosen as a leader. We stressed the fact that a leader has extra chores to perform and that she actually needed to spend all her time concentrating on her studies. Cheryl got over the disappointment reasonably quickly, which showed that she was building up resilience against disappointments.

All of Cheryl’s teachers at The Way played a special role in her life. She will always remember their kindness and support.

Her first register teacher, Mrs van den Heever, helped Cheryl to adjust and gave her advice when she was upset. Her next register teacher, Mrs Ball, remained her register teacher right to the end of her school career. Mrs Ball took time to research Cheryl’s syndrome and led her peers to understand everyone’s differences and help them all to grow as a class.

Mrs de Jager was Cheryl’s CAT teacher, who was a strict but wonderful teacher. Mrs H taught her History and English and although initially Cheryl did not do well in History, she was the teacher that got the children’s interest and attention. Cheryl tends to see things in black and white and that makes it difficult to evaluate and understand the motives for and/or implications of historical events. With Mrs H. and her mom’s guidance, Cheryl developed her discretionary skills and managed to pass History with a 72% average.

Mrs Ball was her register teacher for most of the time she spent at The Way. If something was bothering her or if she felt upset, she discussed it with Mrs Ball and she seemed to have a solution for whatever was bothering Cheryl. She also taught CAT and Cheryl passed Grade 12 CAT with 64%.

Cheryl suffers from dyscalculia, which is a severe learning difficulty in making mathematical calculations. Mrs Snyman was her maths literacy teacher at school and went out of her way to get Cheryl to understand maths. Her father was her teacher at home, putting in a lot of time and effort into helping her with this subject together with Mrs Snyman’s guidance. Cheryl did her part by working hard, with the result that she achieved 68% for Maths Literacy in her finals. Cheryl even practised her new found knowledge in Maths Literacy when her family went on holiday in January 2016. She helped her sister Meghan, a software engineer graduate from Tukkies, with her budget for the holiday. Cheryl’s financial model included the number of meals a day with the probability of eating out and taking into account the duration of the stay. When Meghan praised her sister, Cheryl replied that she could help because she had taken Maths Lit.

Mrs Cilliers, her Afrikaans teacher, was always patient with Cheryl and allowed her the extra time she needed to take the notes down from the board before erasing it. Cheryl always achieved above average for Afrikaans and her pass mark in Grade 12 was also 68%.

Mrs Hoffman, despite her main role of principal, also teaches Geography and succeeds in making the subject enjoyable. Although this is the subject that Cheryl struggled with the most, (largely due to the high volume of theory and map work) she liked the way Mrs Hoffman explained the subject.

If Cheryl had learnt for a test and was about to write it and someone mentioned that they were writing another test the next day it would upset Cheryl so much that she literally started vomiting. Mrs Hoffman recognised this as a panic attack and just quietly explained this to her and calmed her down. She also told Cheryl to come and see her next time this happened, but after that incident it never happened again.

Cheryl also continues to receive treatment from Dr Schuler, the psychiatrist, who also assisted in balancing Cheryl’s emotional state with anti-depressants. The effectiveness of the Concerta, prescribed for concentration, could not be determined by Cheryl and her parents and a high dosage had a tendency to make her nauseous.

Cheryl, who was very withdrawn by the end of Grade 8 at the previous remedial school, began to blossom into someone that was interested, not only in her own well-being, but also in other people’s feelings and well-being. Wherever she goes she is not afraid to be inquisitive and friendly, for example by asking the doctor or dentist about the treatment that she is going to undergo.

Cheryl attended most of the functions at the school and took part in some of the activities. It was a highlight of her school career to attend the matric farewell; she particularly had a lot of fun looking for a dress, as well as attending the “after party”. By the end of matric, Cheryl had fully integrated into the school.

Some achievements that Cheryl obtained at The Way Christian School include: In 2014 she achieved the principals award for recognition of consistent good work. In 2015 she got the certificate for excellence for personal achievement which comes with a floating trophy. This achievement is a special award given to a learner in recognition of overcoming personal difficulties and showing exceptional perseverance.

Another (wonderful) great thing that the school does as part of the valediction is to provide each scholar with an individual and personal scroll, which has a verse from the Bible that is especially relevant to each individual’s personal life. Each scholar’s scroll also includes messages from the teachers and students, declaring what they most appreciate about the individual. These messages attest to the teachers’ knowledge of their students and how the students have grown closer to each other over a period of time. One of the noteworthy comments is, “You have turned into one of the strongest people we know. We admire the fact that you can still smile everyday even though you are having a hard time”. This also attests to the fact that she has grown into a strong, determined and inspirational girl. Cheryl and her parents were immensely moved by the scroll and the valedictory speeches.

As Murphy’s Law would have it, Cheryl had many challenges during her final exams:

Even though Cheryl was subjected to this collection of ridiculous, unbelievable events, she still managed show perseverance and resilience to problems thrown at her and to our great relief and joy, after hoping and praying that Cheryl would just pass matric, she exceeded expectations and passed with not only a qualification for the National Senior Certificate but she had also met the requirements for admission to a Bachelor’s degree. When the Rekord (a local newspaper) was published, it was discovered that not only had she passed, she was the matriculant with the third highest marks in the class of 2015 at The Way Christian School!

Cheryl is taking a gap year now in 2016 as she hasn’t figured out what she should study or what she wants to do for a career. As a last milestone into adulthood and independence, she is preparing for her driver’s licence test. She passed her learner’s licence at the first attempt. Her father is assisting her with driving lessons. During one of these lessons, Cheryl decided to visit the vet and asked the vet if she could volunteer her services to see whether this is a possible career path. Cheryl has also decided to investigate other alternatives …

Cheryl and her family wanted to tell this story to encourage others never to believe blindly what other people tell them and not to believe in the limits other people set for them, but to try their best and the rest will follow. Cheryl’s journey through the various schools was not an easy journey and required a lot of hard work and dedication from her, her family and the teachers. Cheryl is a go getter and does not plan to fail even if others do not always believe in her abilities.

Cheryl has grown into a well-adapted, independent young woman and is admired by her family, fellow scholars and teachers.

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The Way Christian School was established in January, 1998 with only 40 learners meeting for its first Assembly. Today, our core values and Mission Statement remain the same, but many things have changed since those early days. Classes have been kept small in order to create an environment in which learners are able to develop as individuals within the given structures and parameters. Our staff has however, grown considerably since those early years and close on 300 learners now form part of our school family.

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