In this issue of your newsletter
Changing Perceptions 49th Edition
One person raised R7,700 Phase 3 - Progress Daniel gets his wings Jacquetta celebrates her 40th Diary of a Cerebral Palsied Twenty something
April 2014
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.
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Thank you to these amazing Donors who donated four new classrooms at our Reunion School
Page 3 The 8000-feet jump was accomplished with instructor Vernon Kloppers, a qualified tandem skydive instructor from Eston Skydiving Centre. Daniel landed safely on the ground with two thumbs up for his audience, which included his mom and niece. Dominique de Klerk, a 4th year occupational therapy student at UKZN, and her lecturer Helga Koch, who has known Daniel for 6 years, had the idea of making his skydiving dream a reality.
Thirty year old Daniel Ngcobo, who has Cerebral Palsy, was liberated from his wheelchair and all physical constraints as he ‘flew’ through the Durban sky in a tandem skydive. After suffering a little dizziness, Daniel said that he was not nervous for the jump and was so happy he did it. Daniel was born with Athetoid Cerebral Palsy, leaving him with a severe speech impediment and wheelchair bound. He and his mom, Phyllis have been part of our ‘family’ since pre-school.
Jacquetta was a member of CREST for many years and her sister, Cath, who lives in California wrote this tribute to her for her 40th birthday. Today my youngest sister, Jacquetta (Ket) Anne Pearce turns 40! She has no idea what “Facebook” is; she has never owned a cell phone or turned a computer on, driven a car or dealt with money – gives a whole new meaning to “40 year old virgin!” Ket is amazing, sweet, kind, generous and innocent, but she is a lady. A special request for her birthday treat was cucumber or egg mayonnaise sandwiches “cut in triangles if that’s not too much
“Daniel speaks to our students to give them insight into a person living with a disability,” said Helga. “He is open and vulnerable and speaks about issues often overlooked.” Daniel’s skydive has left him ready for more life altering experiences. His next goal is to learn to drive.
trouble Mum”, to share with her Howick Sunfield friends. Ket doesn’t even read so I guess this message is to express how privileged we have been to have had this special person in our lives who has taught us so many tough lessons over the past 40 years.
Happy Birthday our Ket. With all our Love Cath and Gina and All your family xoxo
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Diary of a Cerebral Palsied Twenty-something
Diary no. 46 by Penny de Vries
Challenges abound in life and when living with a disability, even more so! Julia is very lucky to have a wonderful carer, Selinah, who has been with her now for almost 3 years. Selinah was informed in December that she had to have a serious operation. As well as being a huge worry and stress for her, we also had to come up with a plan for Julia. Julia has been amazing at handling this. In case you do not know this, many people with cerebral palsy vehemently dislike a disruption to their routine. Yes, we all do but for Julia it is an almost pathological dislike. I find this perfectly understandable; she has so little control over many aspects of life so has a greater need to control the things she can control. It makes life a little more predictable. I had to laugh the other day when visiting Julia. I sat on the couch and picked up a magazine from beneath the coffee table, paged through it and popped it down on top of the coffee table. I also arranged the scatter cushions to be more comfortable. I was about to leave when she requested in a very firm tone, “Mom, please put that magazine back where you found it and the cushions too!” I was surprised that she even noticed and felt a little sheepish at my cavalier attitude towards her possessions. Needless to say, a major disruption, like Seli being away for at least a month, is in another category altogether. Seli has a driver’s licence and takes her to swimming, to the bio-kineticist, to the doctor and also does the shopping, cooking and cleaning. She is also good company for Julia and they are very close. Julia thought about all the things that needed to be done in advance. Lungile, who stands in for Seli when she goes home once a month was available. She comes every day to help Julia with her activities of daily living. Julia’s sister, Lesley, and I go to her flat on alternate days to give her supper. Julia and Seli planned the meals and Seli cooked up a storm before she left so all we have to do is warm up the food. This has been a great help. Lesley and I are also trying to get her to swimming when our lives do not get in the way. Quite a logistical exercise!
We are into our third week now and we are managing well. Julia is putting on a very brave face but I know how difficult this is for her. Well, I don’t know actually. I cannot know but I can imagine. I decided to ask Julia to explain it to me. This is in her own words: “Seli knows how my brain works so I do not have to ask for things. For example, I don't have to constantly remind her how to do things; she does it how I want it done even if she doesn't like doing it the way I do - like washing and drying me or only washing my hair when I want it washed. She never makes me wait; for example, the other day I waited for you to get off the phone while I was hot and sweaty. I don't wait for food; I get it when I want it - not too early and not too late. I don't feel an overwhelming sense of guilt as she gets paid for it. I feel I can use her as a sounding board if I'm frustrated about day to day life whereas I can't always use you guys because it then becomes too much for everyone. So the little things in life become very hard to deal with because I have nowhere to put the frustration. Last thing; we talk a lot, mostly about silly things but she makes me laugh and I don't smile as much when she's “Courage doesn’t always not around. We can talk roar. Sometimes courage is for hours so I the little voice at the end of miss that.” I found this very illuminating.
the day that says I’ll try again tomorrow” ~ Mary Anne Radmacher~