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Newsletter No. 42/2012
Official mouthpiece for:
THE KWAZULU-NATAL CEREBRAL PALSY ASSOCIATION NPO Registration Number 002-154
P.O. Box 10213, Ashwood 3605 Tel: (031) 700 3956 Fax: 0866 153 913 E-Mail: firstname.lastname@example.org Visit our website at www.kzncerebralpalsy.org.za
A PLACE CALLED PEVENSEY My name is Beverley Neadley. When my daughter Bronwen was born 34 years ago, I held her in my arms and like most parents I wondered what her future would be. What profession would she pursue; who would she marry and how many children would she have? Eighteen months later all those dreams were shattered when she had an accident which resulted in her having Cerebral Palsy. My hopes were now fears for her. “Will she ever talk again” or “Will she ever walk”? My focus was now on ensuring that she would be financially secure should anything happen to me, ensure that she can be independent and not feel as though she is a burden on her family. NOW, thirty four years later, ALL I WISH FOR IS THAT SHE WOULD HAVE ANY KIND OF INDEPENDENCE AVAILABLE TO HER! I am very aware that I am not alone in this regard and there are many parents who find themselves in the same or similar situations. Bronwen attended Browns’ School from a very young age, which enabled her to receive the many therapies that she required. She attended the remedial classes until she was 18 years old. She made many friends and although she would never talk, she learnt sign language and was able to zoom around the corridors of the school in her electric wheelchair. The School had been her sanctuary for so many years. The time flew and as she got older my concern about what her adult future held never left me. How could this child who was so physically and emotionally dependent on me, who had never been away from me, achieve any sort of independence? But it was time to move on. For the next three years Bronwen attended a Day Care facility called CREST – a project under the auspices of The KZN Cerebral Palsy Association which was the next step in her life. She was part of a wonderful team of people who showered her with love. THEN, when she turned 21, SHE decided it was time for her to leave home before her little sister, who is five years younger, beat her to it!!! Reluctantly, I started looking for places that I felt would possibly be suitable. I knew about this farm in Underberg called PEVENSEY PLACE – which is also a project of the KZNCPA. I felt it was too far away and that Bronwen would never survive being so far away from ME. We went to have a look anyway and on arrival were met by a group of the residents. They were so joyful and welcoming. They all looked so happy with their “home” and proudly told me this was “the Rolls Royce of homes” in South Africa!!! I was also struck by the Bronwen (left) with her sister, Loren. location of the farm....... surrounded by mountains and green fields. There were ducks, dogs and even a donkey happily co-inhabiting the beautiful gardens. Bronwen was smiling from ear to ear....... she had found where she wanted to be! After discussing the formalities, Pevensey Place offered Bronwen the opportunity to stay for ten days to see if they could provide her with what she needed and to see if she would cope. Bronwen was up for the challenge and could not wait to pack her case and go on this ADVENTURE. It struck me how brave she was because she did not know anyone there and no one knew her sign language, she needed so much assistance physically – would they care for her like I did?? None of this was a concern to her....... she was at last going to be her own person and that was all that mattered to her!!! I cried all the way home and phoned to see if she was OK, only to be told that she was not there and had already taken a ride into town with some of the residents. She was wasting no time in asserting her long awaited independence!!! This was the start of a girl who had so many limitations both physically and emotionally having the opportunity to experience life in a way I could never have imagined and would blossom into a self assured young lady....... All the staff of Pevensey Place could not have been more supportive and loving. They are a team who work long and hard for the best interests of every resident. Their compassion and understanding of the nuance of every person’s personality is exemplary. ……. Continued on Page 3
You cannot build character and courage by taking away a man’s initiative and independence. - Abraham Lincoln -
……. The assistant staff who help each resident with their personal needs always show such warm and jovial attitudes; this was something Bronwen appreciated so much. I have no doubt that the environment created by all these dedicated very special people went a long way in creating a nurturing environment any parent would want for their child with cerebral palsy and certainly is why the residents are always so happy. The incredible support given by the local community of Underberg also made their days so meaningful. We had a holiday home there and when we would be walking around the town so many people would greet Bronwen that we felt like we were escorting the “Mayor of Underberg”!!!
Bronwen and her nephew, Caleb.
When you have eighty-odd residents all living together, they have to learn to navigate relationships – which in itself is a huge life lesson. Bronwen developed a wonderful relationship with a very special man, James....... this was a life experience I never dreamt she would experience. This was yet another blessing on her journey of life experiences. Like real life, not all of the relationships developed were without their drama. My observation over the years led me to believe that the residents of Pevensey Place live their very own “Soap Opera!”
Bronwen developed relationships with the residents that were deep and meaningful and together they went on trips to the South Coast, game parks, picnics, sporting events, agricultural shows and any events of interest in the community. They had their own events, which they worked on throughout the year, like their annual Fete; gala; annual cricket matches with their parents and other “opposing” teams! Their Christmas play was a highlight and the entire Pevensey family were involved. What struck me is how everyone there feels they have a sense of purpose no matter how small their role – each one forming a cog in what is a very well run facility. Each resident is involved in the workings of the farm, from tending to the chickens and livestock, working in the gardens, caring for the pets, doing laundry, working in the workshop doing hand work etc. Bronwen has always been a very spiritual person and she was immediately taken to the Highlands Church and joined their Bible study. I have always been moved by the number of people who tell me how Bronwen’s faith and commitment to the Lord is such an inspiration to them and that she had touched their lives by just knowing her....... this from a girl who cannot speak God’s word but His love flows through her. Bronwen spent 12 years of her life at Pevensey Place and it was during this time that she transformed from a girl to a woman who has experienced far more than I could ever have imagined. She had her “INDEPENDENCE” and I was given a freedom and peace of mind that she had a life and a family if anything ever happened to me - NO WORDS CAN EXPRESS THE GRATITUDE AND ADMIRATION I HAVE FOR THAT. Note from the Editor: Huge changes have taken place in Bronwen’s life. Please make sure to read more about this in our next newsletter.
ANGUS BUCHAN VISITING PEVENSEY PLACE
Your child will be better prepared to tackle the bumps on the road of life if he has been given the gift of guided independence. - Jacquie McTaggart -
The Roy Parker Memorial Golf Day A sincere THANK YOU to Helen and her family, Brett, Daryl, Susan and Joanne for raising R20,020.00 in aid of our Association. “It is a privilege to donate this money to the people at The KZN Cerebral Palsy Association. This charity is close to our hearts,” said Brett Parker at the prize-giving. Helen deposited the cheque into one of the Association’s collection dolls, which are seen all over Durban in strategic places to raise money for the cerebral palsied. Director, Ina Borstlap, shared with all sponsors and players present, about the Association’s pending development at Reunion School later this year. Sponsorship has been secured for the new autistic wing and for a further 66-bed hostel. However, the entire project needs a further one million rand to complete in full, this will allow for another wing of 4 senior state-of-the-art classrooms. Anyone interested to get involved with this project, please contact Ina, on 031 – 700 3956 or email@example.com.
Kudzai Mqingwana (left), Corporate Social Investment Manager from the Afrisun Community Development Trust at a recent visit to The Reunion School.
THANK YOU FOR BELIEVING IN OUR DREAMS!
BROOKLYN’S HEROES… her parents! Brooklyn Hollwill at The Browns’ School, with her parents, Lee and Megan. Our sincere thanks go to Lee Hollwill, for securing the donation of window frames and a door for our building.
To Dr Poovan Govender and The Shri Sathya Sai Organisation, THANK YOU for arranging an amazingly memorable day for our special learners at Reunion School.
To give real service you must add something which cannot be bought or measured with money, and that is sincerity and integrity. - Douglas Adams -
FNB PASSION 2012 started with an incredible bang. We returned from our annual leave to find that contractors had already started the extreme make over in C.W.A.C. (Children With A Challenge); something that C.W.A.C. has been longing for. New ceilings, light fittings, painted walls, epoxy flooring and adjustments to make our members bathroom more user friendly were just some of the things that FIRST NATIONAL BANK and their generous donors did for us. The FNB Volunteer Team came in on the morning of the Official Opening of the Revamp to paint beautiful murals which brought C.W.A.C. to life. New cots were assembled, new curtains hung and all the last minute finishing touches were done to make our Centre an awesome sanctuary for our severely cerebral palsied members. Our sincere thanks to Kantha Naidoo from FIRST NATIONAL BANK and her entire volunteer team, who project managed this extreme make over in just FOUR WEEKS!!!
THANK YOU, THANK YOU, THANK YOU!!!
Back Row: Sershan Naidoo; Andrew Hudson, Shanal Ramsaroop; Matthew Bass and Preggie Pillay
Jubilation over golfers donation… Alex van Wijk and his golfers hosted their annual Riverside Golf Day at the Papwa Sewgolum Golf Course. Alex has raised a total of R500,000 for local charities over the last ten years. On behalf of the golfers, Max Lunt handed over a cheque of R78,000 to a jubilant Ina Borstlap, Director of our Association. Left to right: Peter Prahl, Melanie van Biljon, Alex van Wijk, Max Lunt, Chris du Plessis and Elly Watson.
PAGE PAGE 5 6
I….than – Albert One person with passion is better fortySchweitzer people merely interested. - E.M. Forster -
DIARY OF A CEREBRAL PALSIED TWENTY-SOMETHING Diary No.39 by Penny de Vries
When Julia starts cracking jokes with strangers, I know she is in a good place. We went to rugby together a few weeks ago. I love the privilege of accompanying her to rugby because we get great seats (yes, I’m in it for the parking too). I thought I’d been clever parking right at the end of the row so we would have space to open the passenger door for her to transfer herself into the passenger seat. When we returned to the car however, somebody had squeezed in at the end so we had to ask them to move their car to give her access. As he did it, Julia shouts out, “Hey watch you don’t knock me down, I think I’m disabled enough already!” Everyone around had a good laugh at that. The last few months have been quite up and down with more change for us all to handle. Julia and Tiaan had been together for almost 6 years and they broke up in October. Even though they both knew it was the right thing to do, it is still an adjustment to separate from someone with whom so much of one’s life has been shared. It is like being on a road to somewhere then realizing you’re on the wrong road; before you find the right road, you have to reverse a bit. What made this more difficult was that Julia is prone to clinical depression; this made it impossible for her to get going with the determination we are accustomed to from her.
Luckily we realised that she needed help and with the right medication, she was back on track. Still reversing but not in the emergency lane. The other drawback we encountered is probably a blessing in disguise. Where would she live? She couldn’t live with me because I live in a building with three flights of stairs and no lift (very common in Durban) so we had to find somewhere else. I say it’s a blessing in disguise because if she stayed with me it would be harder for her to establish her own life without depending on me. The more independent she can be the better for everyone. She wants to be independent too. Every time she is prevented from doing something because of her disability, it frustrates her immensely. Probably because Julia likes to concentrate on what she can do and obstacles remind her of what she cannot do. The upshot of the matter was we found her a furnished flat to rent in Davenport Centre which is very convenient and they have a lift. Selinah, her carer, lives with her and they get on like a house on fire. She has a little car and Selinah has a driver’s licence so she can go to gym, the doctor and whatever else she needs to do. So right now she has successfully navigated her way back to the crossroads. Which road is beckoning her, we still need to discover...
A DREAM COME TRUE There was great excitement and jubilance at the official opening of our new THERAPY CENTRE at The KZN Cerebral Palsy Association on 21st March 2012. “The children at our two day-care centres in Pinetown are severely disabled and therapy for the low-functioning cerebral palsied person is as important as the air they breathe,” says Paula van Eeden, Centres Manager. She thanked all parents as well as volunteer, Pat Moriarty, who stepped up as Project Manager and became an instrumental factor in our dream becoming a reality. Pat raised funds, called on contractors, advised and helped whenever he was needed. As challenges came our way, he rallied troops of donors and volunteers.
Pat Moriarty and Nokie Gasa officially cutting the ribbon at the Opening.
With the commitment of generous donors, “A DREAM CAME TRUE” for our organisation with the opening of our Therapy Centre which is specially equipped for our profoundly disabled children. Julia de Vries, a cerebral palsied adult (see article above), was the guest speaker and shared in her thank you, “If it was not for the different therapies I received from the age of 9 months old, I would be unable to live my life as an independent adult as I do now.” She congratulated the Association with this state of the art Therapy Centre.
No dream comes true until you wake up and go to work. - Anonymous -
and we THANK YOU!
The Browns’ School Therapy Department (Occupational, Physio and Speech Therapists) recently visited our new Therapy Centre and gave their ‘Thumbs Up’!
Mohammed Zakir (back left), Desmond Beemiah, Chief Executive Officer (back right) and Jane Gounder (insert) from Gold Reef Speciality Chemicals (Pty) Ltd presented
machines to Mrs Edith Makhaye for the skills
PROUD PARENTS by Barbara & Roy MacBean Gordon was born by Caesarean section (my third C) at 7.00am on Saturday, 6th November, 1970. He was a beautiful, 9lb.4oz. blond, with blue eyes, and perfect. He had the misfortune to contract whooping cough at the age of 5 weeks (the other boys also got it from their father) and continued to whoop for 6 months in all. His two older brothers suffered from Otis Sclerosis, which was not diagnosed until much later, because it does not usually occur at those early ages. When Gordon was 22 months old, he was diagnosed with meningitis, and hospitalised for 2 weeks. On being released from hospital, I realised that he was not only deaf, but also hyperkinetic. He was obviously frustrated, having been “hearing” before becoming ill. At the age of 3 years, 3 months, he was admitted to Browns’ School, after an assessment. The results of the assessment were that he had no speech, he was deaf, (and one cannot lip-read a language one does not know), no co-ordination, no memory, brain damage, he would never socialise, never reach grade 1, and never walk straight. He also apparently had a sub-normal I.Q. Gordon was at the school until the last term of 1977, when he was re-assessed, and we were told that he could join his brothers at the partially hearing classes at Pelham School in Pietermaritzburg. My husband and I can never re-pay Browns’ for the grounding they afforded our son. After being at Pelham for the last term of Grade 1, Gordon was promoted to Grade 2, and stayed at that school until my husband was transferred to Ixopo, to work there. This move meant a problem with Gordon’s schooling, as the classes in Ixopo had 40 students per class. Friends of ours suggested he attend a small country school at Highflats, 25km’s away. I met the headmistress, Mrs Joan Harper, armed with school reports. Joan told us that Gordon sounded spent the next 2 and a half years there, very the best achievement in both sport and before been won by anyone other than a We made arrangements for Gordon to because we had again been and St Charles had both small children. The Education individually in 1978, and told us IQ. After Std. 8, Gordon Pinetown Boy’s High School, pass Matric, with a B in English. high frequency loss in his right ear, Gordon had been granted a did not use it, because he passed the At prize-giving, he won the Perseverance went to the Technical College in Durban, and extremely well in photography.
the first Browns’ assessment, and two subsequent like a challenge she was prepared to take up, and he happily, playing sport, and winning the trophy for academics in Std. 4 - this trophy had never Std. 5 pupil.
Gordon, his wife, Csilla and their children, Gareth and Iona
become a boarder at St Charles School, transferred, this time back to Durban, classes and a stream for gifted Department had tested Gordon that he had an unusually high moved again. This time to where he achieved a University Being deaf (Gordon has an 80 DB and hears nothing at all in the left) concession for his Afrikaans exam, but subject on standard grade. Award for his achievements. He subsequently achieved a diploma in Journalism, doing
Gordon made many attempts to work in his chosen field, but had no success, and decided to emigrate, and work in London. He spent 7 happy hard-working years at Lee Abbey International Students Hostel in Kensington, leaving after his marriage to his wife, Csilla, a Hungarian member of the staff, and the arrival of their son, Gareth. He is currently working for a large Charity in London, and the family has 7 year old Iona as well. Gordon sends his family back to Hungary for the summer holidays, so the children both speak Magyar, as well as English. Our son phones us at least once a week, and we travel overseas to spend time with him and his family, as well as his older brother and his family, who live in Lincolnshire. NEEDLESS TO SAY, WE ARE VERY PROUD OF OUR SONS.
I am only one; but still I am one. I cannot do everything, but I still can do something. I will not refuse to do the something I can do. - Helen Keller -
CEREBRAL PALSY – DISABILITY NOT INABILITY by Sarah Shannon I have not written to Skallagrigg since 2006 and thought it is about time to bring all readers and donors up to date. For those of you who do not know me, my name is Sarah, I’m 31 years old and I have athetoid cerebral palsy. I am proud to say that The KZN Cerebral Palsy Association has been part of my life for all these years, always providing motivation, support or a soft place to land. I achieved my degree in Psychology in 2007 but was not quite sure if I wanted to make a life by listening to other people’s problems. In April I swam in the Swimming Paralympics World Cup in Manchester, UK. At the time, one of my friends, Jackie, suggested that I become a teacher as I had such a way with children. With my speech impediment I hesitated but with her assurance and my will to succeed, I began my long journey… In 2008, I registered for a Education, Foundation Phase. qualifications, as it was a studies with my swimming Paralympics this year).
Postgraduate Certificate in It took me a bit longer to get my struggle at times to balance my career (I swam in the Beijing
During 2009 I represented Course Championships in Rio silver medals. I also Disability Open Championships medals and a bronze medal World Swimming Netherlands. Last year I Pan Pacific Championships in swimming career, I realized studies was a small sacrifice how fortunate I have been.
South Africa at the World Shortde Janeiro, where I won four represented SA at the German in Berlin. I won two silver during 2010 and I swam in the Championships in the represented South Africa at the Canada. Looking back on my that taking a bit longer with my for me to make, considering
The biggest obstacle that I had was to believe in myself, which difficult for me to do because doubted my abilities, based on made me underestimate my
to face throughout my journey was a struggle. I think it was there were a lot of people who my disability, which in turn own abilities, as a person.
Sarah and her learners from Tswellang School
Thanks to the support of my best friend Riekie, my other friends and the disability unit at the University of the Free State, I proved people wrong and through my own perseverance, I also proved myself wrong. I could actually teach young children. It was during my teaching practicals at Tswellang School for children with cerebral palsy, when I realized that I could be a good teacher. I remember, the first lesson that I taught – I was so scared that I would make a fool of myself. Yet, the children got used to my way of talking and walking. Working with children makes me come alive. I want to work with children with special needs, as I feel that I have a deeper understanding - on what these children are going through. PLANS: I want to do my Honours in Special Needs. At the moment, I‘m still living in Bloemfontein, on my disability grant, in my own little flat, which is so cool, while waiting to see where life takes me… Note from the Editor: -
Sarah is currently looking for a teaching job as well as sponsorship to purchase her books for her Honours. If you can assist, please contact firstname.lastname@example.org Read more about Sarah’s friend Riekie on www.kzncerebralpalsy.org.za
The mediocre teacher tells. The good teacher explains. The superior teacher demonstrates. The great teacher inspires. - William Arthur Ward -