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.

Skallagrigg has a new name....

After a well supported competition in our

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,

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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Once you receive an email confirming your account,

login and in the search box at the top type in:

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Palsy Association”

and select “Like”....

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P

In this 44th issue of your newsletter

Diary of a CP 20-something

Keeping up with the Neadleys

Fetes updates

Our CWAC family is growing

Heritage Celebrations

News from Kilimanjaro

HANGING

ERCEPTIONS

C

Please join us....

We would love for you to follow us on

Facebook and Twitter.

“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 -

Diary of a Cerebral Palsied Twenty-something Diary no. 41 by Penny de Vries

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

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!

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

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

Pevensey Place Fete By Jan Niemand

Director of Pevensey Place

On 22 Sept 2012 Pevensey Place

had their annual fete at the Underberg School.

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.

The community of Underberg

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

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.

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!!!

Browns’ School Fete By Jane Noble

Income Development Director

Fete Day 2012 was once again a

great success, owing to the

tremendous hard work and

dedication of our wonderful team.

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 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.

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.

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.

More gratitude....

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

Barbara Hollingsworth – Secretary

Doug Hawkey – Treasurer

Anne Fraser

Nomthandazo Mhlongo

Edith Makhaye - Reunion School

Jenny Pahl

Anne Ford

Judy Mackinnon - Browns’ School

Lindi Nyirendi

Simon Manda - Co-opted

Colleen Bailey - Co-opted

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.

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

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Heritage Day Celebrations....

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.

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.

Ground breaking news…

The Heritage Day celebrations also marked the

ground breaking of our new building development,

which will include

a wing of 4 senior classrooms,

Seeking sponsorship

an autistic unit of 3 classrooms

Sponsored by The Victor Daitz Foundation

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