Changing Perceptions: October 2012

In this 44th issue of your newsletter

Skallagrigg has a new name....



Diary of a CP 20-something

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Keeping up with the Neadleys

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Fetes updates



Our CWAC family is growing



Heritage Celebrations

After a well supported competition in our  News from Kilimanjaro last Newsletter, the new title of our Newsletter has been selected at our Annual General Meeting. We had 29 titles that were nominated, which were narrowed down to three. With an overwhelming vote the most appropriate and winning title as suggested by Quinton Olivier was,

CHANGING PERCEPTIONS Quinton recalls: “As a child the Browns’ School fete was part of my annual ritual, joining the Frame family. I have fond memories of this well organised annual event and although I now live in Australia, I am thrilled to read that the fete still stands strong as part of the Durban events calendar.”

For the last 12 years Quinton has been an active supporter and donor of the Association. We thank him for participating in this endeavour!

Thank you to donors, members and staff who entered this sms competition and joined the quest to find a title.

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P O Box 10213 • Ashwood • 3605 Telephone: +27 (0)31 700 3956 • Facsimile: +27 (0)866 153 913 Email: info@kzncerebralpalsy.co.za • Website: www.kzncerebralpalsy.org.za Our Association is a registered Non-Profit (002-154 NPO) and Public Benefit Organisation (PBO 930000042) with Section 18A Tax Exemption status.

Diary of a Cerebral Palsied Twenty-something The end of the Paralympics left a void in Julia’s life.

During the Olympics she was only really interested in watching the swimming because she used to swim competitively. In the Paralympics however, she wanted to watch everything; especially if the competitors were cerebral palsied.

During this period it was amazing how many articles were written in the newspapers about the difficulties faced by people with disabilities.

Hopefully this awareness will continue and not simply fade away until the next Paralympics.

There are many institutions that would do well to examine their organisations with a view to analysing their systems, policies and staff attitudes from the point of view of someone with a disability.

Hospitals, in particular, seem to have a lot to learn. One would think that as they are ostensibly part of the caring profession that they would be more aware of this but it seems not.

A few months ago Julia had to be hospitalised for severe asthma. I was sitting with her when the nurses came to complete the admission forms. Julia is 25 years old and her

Diary no. 41 by Penny de Vries

cognitive abilities are excellent. The nurse said to her, as if she was a baby, “I’m just going to ask mommy a few questions.” Julia was unimpressed with this and asked the nurse in a commanding manner, “Please direct your questions to me!” Despite this perfectly reasonable and understandable request, this nurse insisted on directing all the questions to me and looking at me while she did so. I simply looked away and ignored her until Julia had answered. Some people might wonder why this is so important to Julia. It is because she has a constant battle to be recognised as an individual who is capable of running her own life. People often address the person with her rather than addressing her directly. Many people see the wheelchair, not the person.

It would be helpful if the forms were designed to ask the correct questions too. Why is there not a section that is only used if the patient has a disability? Julia cannot get off the bed and go to the toilet alone – this is what they need to know. As she has a lot of hospital experience that started when she was 4, she tried telling them the common mistakes made but they were not interested.

For example, they bring her a glass and a jug of water and walk away.

She cannot lift a jug and pour water herself. When she pointed out that they should offer to pour it for her, the reply was, “You must just ring the bell if you want someone to do that.”

Apart from the fact they take an age to respond when the bell is rung, does it make sense? Bring water, walk away and come back to pour it when the bell is rung?

Despite the frustrations, we did have one funny moment; they asked if she was anaemic and she said, well it's pretty obvious that I'm not cos I'm overweight. She thought they said anorexic so we had a giggle in between the coughs.

When are people going to be taught how to communicate with people with disabilities? In other words treat them as you would anyone but just check with them re any special needs.

Keeping up with the Neadleys (read more on www.kzncerebralpalsy.org.za) After Bev and Bronwen’s recent visit to South Africa, she shared their experience of the flight back to America...

Our flight back home to America started off a little frustrating - from finding out at the last minute that United Airlines only allows one piece of luggage each (we had three bags between us) to being 2kg overweight per case, despite having weighted them ten times.

Much to the check in clerk’s amusement I had to open the cases and decide which items to leave behind: my clothes, shoes or the

Captain Morgan/Old Brown Sherry, Nandos sauces and Biltong. The clothes and shoes lost!

We were escorted to the plane but the steward wouldn’t let us enter from the front, even though I offered to carry Bron to her seat as we were the first to board. He sent us back downstairs to the PAU (passenger assistance unit). As we got there the guy who would load us said with a big smile on his face, “The PAU – she is broken.” Back we went to the aircraft front entrance. By this time everyone was on the plane and I suggested to the steward that he might like to put us in first class to save us having to

struggle to the back with all the passengers on the plane. He said, “Sure NO PROBLEM!” Unfortunately this was just the domestic leg of our journey but it was an awesome experience anyway.

After a short stopover in Johannesburg, we were on board our flight to Atlanta. As soon as dinner is over I settle Bron with earphones and she watches movies and I sleep.

Bronwen makes clearing customs a breeze as you don’t stand in any lines – and before we knew it we were onto the final flight to Fort Lauderdale. Home at last!

“To effectively communicate, we must realize that we are all different in the way we perceive the world and use this understanding as a guide to our communication with others.”

- Anthony Robbins -

Pevensey Place Fete

Browns’ School Fete

By Jan Niemand Director of Pevensey Place

By Jane Noble Income Development Director

On 22 Sept 2012 Pevensey Place had their annual fete at the Underberg School.

Fete Day 2012 was once again a great success, owing to the tremendous hard work and dedication of our wonderful team.

The preparations for this great day started months ago and everybody who was involved really worked very hard.

As usual we had all our traditional stalls which included pancakes, boerewors rolls, meat, homecraft, white elephant, books, cakes, tea garden, games, Highlands Church stall, vegetables, plants and various private stalls. A new item was horseracing which was very enjoyable.

Staff, parents, previous parents (there are just some people we can’t let go of ), our ever-faithful service clubs, members of the community and learners from WGHS, WBHS and Kloof High School, all pulled together in the great fete production.

The community of Underberg supported us wholeheartedly and we were highly successful and made a whopping R74,500.00 in 5 hours.

The fete machine starts rumbling into action days before, as classrooms get cleared out, over 200 trestle tables get shifted into position and a whole year’s accumulation of goods for the various stalls get sorted, cleaned, priced and put on display.

The Lord looked after the weather and we had a rain free fete although a 60% chance of rain was predicted. What is very interesting is that the rain held off until we were nearly packed up and then it started.

It’s always a humbling experience to watch the team at work, making everything happen, and to see that some of them, still have huge smiles on their faces at the end of a long and exhausting couple of days.

If we have to name everyone that worked so hard, we would need at least a new webpage! Our heartfelt thanks to every person who worked tirelessly, organised, donated, baked, sewed and did all the various things to make this day successful.

Thank you Underberg, visitors, and in particular, Mandy Wood and Audrey Turner for the bulk of the organization and all the effort and hard work put in by the staff.

Our Golfers rock....

To the Captain, Peter-John and members of SHAFTERS golfers, another huge thank you for your donation of

R12,000!

Your continued support is AWESOME!!!

The community turned up for the day and spent their hard earned cash cheerfully, cleaning out most of the stalls, eating every scrap of food available and having a ball with all the entertainment provided.

We are forever grateful to ALL of our supporters in all the ways they have supported our special children.

Thank you

to Marty

and his team at M Projects for moving the wooden huts at Reunion School to help get the new development underway.

Introducing our new Executive Committee 

Penny de Vries – Chairperson



Thabisile Sishi - Vice-Chairperson

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Barbara Hollingsworth – Secretary

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Doug Hawkey – Treasurer

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Anne Fraser



Nomthandazo Mhlongo

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Edith Makhaye - Reunion School

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Jenny Pahl



Anne Ford

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Judy Mackinnon - Browns’ School

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Lindi Nyirendi

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Simon Manda - Co-opted

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Colleen Bailey - Co-opted

Our C.W.A.C. family has grown again....

Muyumba is 10 years old and has spastic quadriparesis Cerebral Palsy. He is unable to sit on his own and needs assistance with all his basic daily needs.

Nkosi is 6 years old and has spastic Cerebral Palsy. He is able to walk, but is not very steady on his feet and still needs assistance with all his daily needs.

“It is not the honor that you take with you, But the heritage you leave behind”

“It is not the honor that you take with you,

More gratitude....

- Branch Rickey -

Heritage Day Celebrations....

Ground breaking news…

As South Africans we celebrate Heritage Day by remembering our cultural heritage and this was no different at our Reunion School for Cerebral Palsied children.

The Heritage Day celebrations also marked the ground breaking of our new building development, which will include

Learners, staff and invited guests were treated to a traditional ’potjie’ prepared on an open fire; as well as other traditional foods. The children entertained everyone with song and dance from all different cultural backgrounds.

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a wing of 4 senior classrooms, Seeking sponsorship

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an autistic unit of 3 classrooms Sponsored by The Victor Daitz Foundation

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additional hostel facilities which will double the current capacity.

Sponsored by The Afrisun Community Development Trust Much appreciation to the Foundation and Trust for your partnership in supporting this development!

Director, Ina Borstlap, says: “I am confident that we’ll raise the final R1 million to enable us to complete this full development. So… if I haven’t yet knocked on your door, please call me and join as a partner.”

See our website for the proposed plans.

www.kzncerebralpalsy.org.za

“Let us be grateful to people who make us happy; they are the charming gardeners who make our souls blossom” xxxxxxxxxxxxxxxx

- Marcel Proust -