Newsletter 54 dec 2015 by Sheila McCallum

In this issue of your newsletter

Changing Perceptions 54th Edition

 Diary of a Cerebral Palsied twenty something

 Christmas arrives early at Reunion

 I never dreamed

December 2015

Dear Readers, We are proud to celebrate the end of yet another year - a year during which we achieved and demonstrated our commitment to ensuring that the lives of people in our care are enriched, protected, nurtured and bettered. As I am entering my 25th year of service, I reflect on the past and recognise our achievements. Let me start with a sincere thank you to all our Donors, Committee, Staff, Volunteers and friends for your long lasting partnership and support throughout the years. None of our success could have been achieved were it not for the dedication and commitment of selfless people who have internalised the challenge of reaching out and making a difference in the lives of the deserving. The great strides towards changing and improving the conditions of people with disabilities have been made thanks to the collaboration of

partnerships with various role-players. I want to thank all of you for making it possible during the past year and I urge you to once again unite and work with us to benefit the Cerebral Palsied in the years to come. May we continue to once again collectively place the interest of others before our own so that our success can be measured by the volume of lives we impact in the course of executing our assistance. Let us not stop when we are tired, but stop when we are done.

I wish one and all a Blessed Festive Season and a Prosperous 2016! Ina Borstlap Director

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 Banking details: First National Bank, Account Number: 508 11 33 0451; Branch Code: 221626 (Pinetown) 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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Diary of a Cerebral Palsied Twenty-something Diary no. 51 by Penny de Vries Julia held her housewarming in August once all the renovations had been completed. Before this happy day dawned, she had spent some time in hospital. As discussed in the last diary instalment, the stress of the extensive renovations which disrupted her routine was too much for her. Added to the disruption was the fact that she injured her left wrist. For Julia, this is tantamount to having her hands amputated. Her right hand cannot be used very much at all so she is very reliant on the left. Julia has always crawled around at home to get from room to room. She usually crawls into the shower too which is difficult because showers usually have a high lip at the entrance. This is exactly why we decided to enlarge the bathroom and ensure the shower entrance was obstacle free. With her left wrist injured this became almost impossible. The best cure for a wrist injury is rest but when itâ&#x20AC;&#x2122;s the only working hand you have, itâ&#x20AC;&#x2122;s a little tricky. Being hospitalised was a blessing in disguise; an orthopaedic surgeon referred her to an occupational therapist who specializes in wrists. This is when at the age of 28, Julia had to confront ageing. Several different sources reveal that adults with cerebral palsy experience premature ageing which begins in the twenties and thirties. Wendy King, the OT told her that she must stop crawling around and must rather use her wheelchair more else her left wrist would be so damaged by the time she is forty that

she will lose the use of it. The weight she has put on in the last few years has not helped either. She also made her two customized braces to wear; one hard and one soft. Wendy also phoned me and told me, we have to ensure that the heights of her bed, toilet, basin, shower rose etc must be as low as possible. This was timeous information as the bathroom was still in the throes of being fitted. We had asked for everything to be lowered but not as much as Wendy recommended. This has been a wake-up call for us and we realise that she must see an occupational therapist on an annual basis from now on. Fortunately this house is spacious enough that she can use her electric wheelchair to get from room to room. One of her favourite tasks now is taking her own plate back to the kitchen. She is doing very well at the moment; her wrist has healed; she has lost some weight and is even getting into her electric wheelchair on her own now. I have included some sections on Ageing in Cerebral Palsied Adults copied from the Disabled World website. As health care in childhood improves, there are now more adults with cerebral palsy and it is important that we are all aware of the specific challenges of this phase.

Do Adults with Cerebral Palsy Face Special Health Challenges? Premature aging The majority of individuals with cerebral palsy will experience some form of premature aging by the time they reach their 40s because of the extra stress and strain the condition puts upon their bodies. The developmental delays that often accompany cerebral palsy keep some organ systems from developing to their full capacity and level of performance. As a consequence, organ systems such as the cardiovascular system (the heart, veins, and arteries) and pulmonary system (lungs) have to work harder and they age prematurely.

Post-impairment syndrome Most adults with cerebral palsy experience what is called post-impairment syndrome, a combination of pain, fatigue, and weakness due to muscle abnormalities, bone deformities, overuse syndromes (sometimes also called repetitive motion injuries), and arthritis. Fatigue is often a challenge, since individuals with cerebral palsy use three to five times the amount of energy that able-bodied people use when they walk and move about.

Pain Issues related to pain often go unrecognized by health care providers since individuals with cerebral palsy may not be able to describe the extent or location of their pain. Pain can be acute or chronic, and is experienced most commonly in the hips, knees, ankles, and the upper and lower back. Individuals with spastic cerebral palsy have an increased number of painful sites and worse pain than those with other types of cerebral palsy. http://www.disabled-world.com/artman/publish/health-challenges.shtml

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Thanks to the generosity of Round Table Durban No. 2, our old 40 bed hostel at Reunion School received a total make-over.

The transition was amazing and the children are thrilled with their refurbished home away from home.

â&#x20AC;&#x153;Piglet noticed that even though he had a Very Small Heart, it could hold a rather large amount of Gratitude.â&#x20AC;? ~ A.A. Milne, Winnie-the-Pooh~

Page 4 By Jeff Davidson Taken from: http://specialneedsparenting.net/

This week one of my good friends accompanied his eighteen-year-old son off to join the Marines. Another friend sent his eighteen-year-old child off to college.

All along this journey as a dad of son with profound special needs, so many expectations were surrendered, and so many dreams died.

And then one day I realized that the burdens often provide the biggest blessings in our lives. For every Last night he peed in the bathtub. dream that is dashed by the new normal as a dad of a The gap between our life and the life of a typical family is child with special needs, a window is cracked into new insights and revelations from God. sometimes so vast that it’s difficult to comprehend. As my wife likes to say, “Sometimes my reality is just too I never dreamed I could love so unconditionally until real.” God gave me son with special needs. My son turns eighteen in two weeks.

I remember in the early years desperately clinging to the I never dreamed I would see the essence of the Gospel words, “developmental delay” because they somehow lived out in my own house every day. implied a time would come where his development I never dreamed I could find joy in the simplest of things would catch up. until I had a son with special needs. Those words were the anchor of my hope. I never dreamed I could find such contentment in daily But as my son got older the gap widened instead of laying my life down for my son’s needs. narrowing. Our new normal was constantly being I never dreamed I would modified and adjusted. treasure having a teenage I never dreamed that my boy fall asleep on my son would remain nonshoulders at night. verbal his whole life. I I never imagined the never imagined that I gratitude I could feel would never hear the just sitting beside words, “I love you,” him on a swing at much less hear him call night, speaking me dad. blessings over him. I never dreamed that he I never imagined the would never be able to sheer happiness I walk independently could have in just without physical making him smile and assistance. laugh. I never dreamed we would I never dreamed that God would use the life of my son so have to feed him all of his meals hand by hand, bite by much to completely change me, inspire me, and draw me bite. closer to Him. I never dreamed that I would never be able to get a good I never imagined that my life would have so many tears night’s sleep ever again. and so many moments of despair. But I also can’t I never dreamed he would always need our help with imagine it any other way. bathing, getting dressed, shaving, and all of the other No my life didn’t turn out at all like I imagined or basic needs. dreamed. But I also never imagined that I would want to I never dreamed he would never drive, marry, or give us go back and do it all over again like I do now. grandchildren. Who knew that I could hear “I love you Dad “every day, I never dreamed he would watch the same Wiggly Safari despite him not saying a word? DVD every day before supper for fourteen years. For every dream that died, God replaced it with a I never dreamed we would never go camping, fishing, or blessing. I never imagined that life could be so hard, and travel to ballgames like my dad and I had done when I yet so good, all at the same time. And I never dreamed was a kid. that the things that created the most challenges would I never imagined he would never learn to read or write. also bring the greatest blessings. I never dreamed he would live with us even after becoming an adult.

You never get to experience a rainbow until you’ve endured the storm. I’m living for the rainbows.

We invite you to sponsor a collection doll to our Association. As a non-governmental organisation, it is becoming increasingly difficult to maintain our standard of support. In view of this, our Association has the motto

We are doing just that with our unique Dolls ‘n Boxes Programme, which has great community participation. We place collection tins and dolls in various shops throughout the region. Our voluntary collectors clear the money and another team of volunteers counts the mounds of money at our offices. One doll raises in the region of R1,000.00 per year.

YOUR INVESTMENT OF R1,000.00 WILL RAISE APPROXIMATELY R10,000.00 OVER THE NEXT 10 YEAR PERIOD. YOUR LEGACY WILL GREATLY ENABLE US TO CONTINUE OUR VALUABLE WORK. If you wish, we shall affix a plaque to the base of the doll, displaying YOUR name, i.e. This doll is