Editor’s Message by Wilna Gates
C
ount Us In, Include Us, Re Kenye, Sifake Nathi, Sluit Ons In, Le Rona O Rebale.
achievements and many more. Also featured is information about the 12th World Down Syndrome Congress which will take place later this year. Read all about this on page 13.
As the newly appointed National Organisational Development Officer / editor of Sibaleni Nathi, I experienced a challenging yet fulfilling past few months. We have decided to change the ‘face’ of the magazine and are therefor featuring our new National Executive Director and her family on the cover, under the theme of Down Syndrome International who for the 10th anniversary of World Down Syndrome Day and the 21st anniversary of the International Year of the Family, will focus on the role of families and the
Discover Communication With The Wonder of Sign Language
Thapelo Chiloane and WIlna positive contribution that they can make towards the enjoyment of full and equal rights for people with Down syndrome. We have a jammed packed edition from Branches’ news, to personal stories, sport
As usual the magazine will be distributed to all our Branches, Outreach Groups and Support Group who will in turn distribute it to their members and other interested parties. Distribution does however not stop there. It also gets distributed internationally, published on Issuu (digital publishing platform) and of coarse, Facebook. Read on and enjoy!
Tiny Handz is known for being one of the leading training companies in Basic South African Sign Language, with specific focus on special needs. Tiny Handz Reg 2009/191347/23
TINY HANDZ CC presents you with: Training for parents, teachers, therapists, caretakers or anyone involved in the special need spectrum for use with children or adults with various medical conditions such as autism, down syndrome, cerebral palsy, hearing loss, intellectually challenged, verbal apraxia etc. Visit www.tinyhandz.co.za for more info and read what others had to say about the training and a variety of success stories! Go listen to radio interviews or read magazine articles also posted on our Home Page. All signs taught are based on South African Sign Language. (8 CPD points apply) View our Website under ’classes’ to see when we will be in your area. If you are at a school or organisation and wish to have the training done at your centre, please contact us for a quote and available dates. Contact us on e-mail mail for a full list of those all over SA, who have benefited from our training over the last 7 years. CONTACT
MONITA BESTER 0822187339 www.tinyhandz.co.za contact@tinyhandz.co.za
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Sibaleni Nathi - Volume 11 - 2015
Remember!! Casual Day 4 September
Contents Thank you to all our generous Sponsors and loyal Supporters Sibaleni Nathi is a publication of Down Syndrome South Africa (DSSA), which is published and distributed annually. EDITORIAL BOARD: National Executive Board Members. DISCLAIMER: The editorial board does not promote or endorse any therapy, treatment, institutions or product, etc. through this publication. Views expressed in personal stories printed in this publication, may not be those held by the editorial board or by DSSA. Sibaleni Nathi aims to report items of interest relating to Down syndrome and other intellectual disabilities, focusing on the vision of DSSA. CONTACT DETAILS: Po Box 453, BRUMA, 2026 Tel: 0861 369 672 (DOWNSA) Tel: (011) 615 2990 Fax: 011 252 5323 Email: dssaoffice@icon.co.za Website: www.downsyndrome.org.za Like our Facebook Page: Down Syndrome South Africa Stay up to date with latest news and events BECOME A SUPPORTER All donations are welcome DSSA - Current Account Standard Bank 202 470 695 Eastgate 018505 Swift Code: SBZAZAJJ
National News
In this edition
Chairman’s Message 4 Editor’s Message 5 Message from the Director 6 National Activities 7 News from the Project Manager 8 Lotto and National Disability Righs Parliament 9 Awareness and Fund Raising 10
International News
International News 12 World Down Syndrome Congress 13
Features
Article of Interest 14 My Story 15 Family’s Story 16 An Inspirational Story 18 A Sibling’s Perspective 19 Sport 20 Self Advocacy 24
Branch News
Amathole 28 Free State 30 Gauteng 32 KwaZulu Natal 34 Nelson Mandela Metropole (PEDSA) 36 Support Cape 38 Tshwane / Pretoria 40 Western Cape 42 Outreach Groups 44 Support Group 46 Contact Details 48
On the cover, the Ramjas Family - Back: Sainesh, Kiara, Ancella and Ashley Front - Thameez
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Chairman’s message
by Thabang Chiloane
our rights!” People with Down syndrome have equal rights than anyone else. We should refuse to back down to abuse and negligence. We need to refuse to accept substandard treatment from anyone especially medical practitioners, on whom our children’s health depends.
I
Thabang, Thapelo and his wife Cathy
t has been a swift two years since the current board of directors and the steering committee took office. In this time there has been changes around us and within Down Syndrome South Africa (DSSA). Vanessa dos Santos resigned, and was replaced by Dr Barbara Monyemore who also resigned and we now have a new National Executive Director, Mrs Ancella Ramjas. On behalf of DSSA, I wish to welcome Ancella and wish her all the best. One thing that has not changed is the need to continue the hard work against stigma and to provide the much-needed services to all people with Down syndrome who need it. There is a lot more information, advocacy and education that are still needed to level the playing fields for people with Down syndrome.
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Ignorance about Down syndrome has no boundary. Some of the most uninformed are the most educated in society. Those we least expect to react badly, often perpetuate the discrimination and stigma. These are close family relations and friends. The effects of such discrimination can be serious and adversely affect the person with Down syndrome. Even if no serious physical harm happens, the stigma has a serious effect of the emotional wellbeing of the victim. I believe it is time people with Down syndrome and their families increased the efforts to stamp out this deprived mentality. Like a bully that needs confronting, we need to stand up and speak up! In the words of Peter Tosh, “we need to get up, stand up and stand up for
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As we demand equality from others, it is also only fair that we should pick up our socks as parents, guardians and careproviders of people with Down syndrome. We also cannot sit back relaxed and expect things to fall into place. History has proven that such an attitude will not make us win. We should, therefore, stand up and roll up our collective sleeves and put our shoulders to the wheel. The National office and Branches of Down Syndrome South Africa need help of all sorts. My dream is to have a serious cohort of people with Down syndrome and their supporters who refuse to accept marginalisation at any front. An army of people that refuse to retreat when injustice is done. We need to get to a point where people do not even think twice when they see a person with Down syndrome. People with Down syndrome should not be ignored and / or treated as figments of imagination. Such treatment has gone too long and too
far. Collectively, we are louder and more powerful than when divided. We should resist divisions by all means. The course is bigger than individuals. Together we should stand to fight against this constant barrage of discrimination and stigma. As I end this note and my term in office, I wish to thank all, especially the DSSA board and steering committee, who have played a positive and constructive role in the past. For those on whose toes I have trampled, I beg for your forgiveness. It was never meant to be personal glory, but for the good of us all. Thank you to Vanessa dos Santos for a life spent giving. I thank and praise all parents, guardians and careproviders who have never given up on the dream for a better life of all of people with Down syndrome. My high school principal used to say: “we meet to part and we part to meet again.� Soon the current board will have to say goodbye as we vacate the office. We hope and encourage branches to avail more dedicated people who will also give of themselves in service of people with Down syndrome. We should all shout Sibaleni nathi – count us in! It is about time.
Landline 011 963 3476 Email admin@sowlecentre.co.za
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Message from the Director
Ancella Ramjas
W
elcome to our 11th edition of Sibaleni Nathi 2015. Let me start by introducing myself, my name is Ancella Ramjas. For those who don’t know me, I was the Executive Officer at the Pretoria Down Syndrome Association. I think it only appropriate that I tell you of my life’s journey that has led me into the hot seat of the new National Executive Director of DSSA. Little did I know that when I married the boy next door on a Spring Day in 1989, 25 years ago that the birth of my middle child would forever send us, especially me on a journey that I would never have imagined. My husband, Ashley Ramjas is
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a physiotherapist in his own private practice, we have three beautiful, above average intelligent children (takes after me), S a i n e s h our eldest son is 24 years old and studying at the University of Pretoria, Thameez our eldest daughter with Down syndrome is 18 years old and currently doing home schooling and last but not least, my youngest daughter Kiara, 14 years old in grade 9 at a local school in Eldoraigne. Today we are much like any other family, but it wasn’t so when Thameez was born 18 years ago. I went through the same roller coaster of emotions when the news was broken that the child that I have given birth to was not the one that I had envisioned, in a few seconds my whole life had changed. Despite an incredible supported family I had difficulty in fully accepting my daughter’s diagnosis and it took a lot of courage to finally pick up the phone and contact the local branch of the Down Syndrome Association. My defining moment came when I
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attended my first group meeting and there was a table covered with pictures of babies and children with Down syndrome, I broke down crying, but that was the last time I cried. I volunteered as a Toy Library assistant at the Pretoria Down Syndrome Association and in June 2006 I was elected vicechairperson. In November 2006 I joined the association as an office staff member where I remained till 2014. Taking on the position of National Executive Director (NED) is indeed a daunting task, especially when following in the footsteps of our past director Vanessa dos Santos. Words fail to capture the true testament of her dedication. While I might not be able to fit into her footprints, I will continuously strive to walk as close to hers as possible in making the world a better place for our children. It’s not about getting to the top or the other side of the mountain; it’s about the journey one travels to reach the top. Life is about the lessons we learn, and not just for our children, but for parents as well. I know that had my daughter not been born holding her little secret that I would never have walked this path, a path that has been shaped by pain, perseverance, joy and finally celebration.
National Activities
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lthough our past National Executive Director (NED), Mrs Vanessa dos Santos resigned in Jan 2014 she has still been working in the background, as we were not successfully able to fill this position until January of this year. Here are some of the activities that she has been involved with since our last magazine was issued in June 2014. Vanessa had the opportunity of attending the 6th Conference of State Parties (CoSP) on Disability, which took place at the United Nations headquarters in New York 17-19th July 2014. The theme for this session was: “Ensuring adequate standard of living: empowerment and participation of persons with disabilities within the framework of the CRPD”. Here she met with the Deputy Minister of Social Development Hon. H Bogopane-Zulu. This gave her the opportunity of discussing the Post 2015 Development Goals and a way forward for South Africa and people with disabilities. DSSA hosted a one-day workshop on “Access to Justice for people with Intellectual Disabilities”. The workshop focused on the case on Intellectual disabilities and the Criminal Justice Systems, which went to the High Court of which
DSSA had filed an application to intervene as amicus curiae (friend of the court), which was accepted. The workshop outlined what the case was about and how DSSA’s intervention aimed to advocate for the rights of people with Intellectual disabilities. Vanessa represented DSSA at the hearing in the Western Cape High Court in August 2014. The case was then referred to the Constitutional Court, which was heard on the 17th November 2014. This follows a judgment by the Western Cape High Court declaring that section 77 (6) of the Criminal Procedure Act unconstitutional as it violates the accused’s’ right to freedom and security of the person. We still await the final decision regarding this case. For more information contact our office or refer to our website for the press releases. She has also been called by the press for comments on other cases dealing with Down syndrome which have gone to the constitutional court and has continued to advocate for the rights of persons with intellectual disabilities at many forums, meetings and giving input into policies etc. Working with the new NED and the Steering Committee, DSSA has developed a new strategic plan for the next three years. The
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main focus areas and objectives are: • Access to justice and gender based violence; • Education for all; • Advocacy, Awareness and media; The focus areas will be mostly in the impoverished areas in South Africa and achieved through: • The empowerment of our members, staff and other stakeholders through the development of materials and training; • Increasing educator (and other stakeholders) awareness on how to include children with Down syndrome and other intellectual disabilities into regular schools; • Raising awareness through all forms of media; • Advocating for the rights of persons with intellectual disabilities. Since our funding from LEV (Denmark) has come to an end and there has been no call for applications for funding from the National Lottery Distribution Trust Fund (NLDTF) we have been writing several proposals for funding focusing on the above. In order to keep our office open and employ our very capable staff we desperately need support. We trust that you as members will continue to support DSSA and its branches in the future.
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News from the Project Manager by John Dikgale
D
SSA / LEV – Break the Barrier – Strengthening the Townships in South Africa for People with Intellectual Disabilities Project Over the past three years DSSA and LEV Association of Denmark implemented the Break the Barrier – Strengthening the Townships project in South Africa for people with intellectual disabilities. The project focused on increasing the inclusion of marginalised families of people with intellectual disabilities through the Self Help Groups. This will secure greater visibility of people with intellectual disabilities in community life in the townships. More than six Self Help Groups were established countrywide exceeding the mandate of the project. The decision to reach out to additional settlements beyond those approved for the project signalled an interest in sustaining and promoting the Self Help Group concept. The members of the Self Help Groups have derived a wide range of benefits from the project. These included an improved understanding of Down syndrome, improvements in marital unity and gains in self-esteem accompanied by increased visibility of people with Down syndrome and a decline in isolation. In most groups parents
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were not only motivated but spoke about their children with great pride and affection. The Self Help Groups were further used to access information on intellectual disability and to facilitate access to a variety of services such as health, education and social grants. In the group meetings participants shared their measured successes with their children’s development and got practical help and encouragement from other participants. Dedicated task teams followed through the decisions reached at meetings systematically with regular feedback.
John relaxing in his hotel room between meetings. The most vibrant groups chose to build on their potentials and to press ahead with whatever limited actions are within their control. Parents formed new friendships and helped others
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to deal with the isolation they sometimes experienced. In the Self Help Groups women outnumbered men by a large margin. Some fathers are coming to terms with the condition of their children and have become more supportive of their wives’ involvement. The Self Help Group concept contributed to a growing acceptance of people with intellectual disabilities and a reduction in isolation of affected families. The project was evaluated in November 2014 and the evaluation team was David Korboe, Thabisile Levin and Lisbeth Rasmussen. They held discussions with Self Help Groups’ members in Witbank, Pretoria, Tzaneen and Durban. They found that Self Help Groups and their members appear to be most vibrant and effective when participants’ motivation is driven by a strong appreciation of the value of mutuality and recognition that other families with similar experiences are potentially an effective form of support. Participants focus on the support within the group rather than on the challenges outside of their control. Members are keen to learn and continually educate themselves. Groups have a clear purpose and their actions emphasize on claiming and protecting their rights.
DSSA Outreach Groups – Lotto Project Down Syndrome South Africa received funding from the National Lottery Distribution Trust Fund in January 2014 for our project application in 2012. The funding was utilised to support our Outreach groups established in Mpumalanga, Limpopo, Free State, Northern Cape and North West Province. These Outreach groups are a key component of DSSA strategy to empower the underserved families of people
with Down syndrome and other intellectual disabilities in rural and urban communities. DSSA employed four outreach co-ordinators as well as an
2nd from left to rigth: Marie Schoeman, John Dikgale and Dumisile Khuswayo National Disability Parliament 2014
Rights
International Day for Persons with Disabilities is recognised throughout the world. The day is celebrated on the 3rd of December of each year. As part of the National Disability Rights Awareness Month, the 2014 International Day for Persons with Disabilities celebrations took another strategic direction
administrator in the Free State province. They were tasked to disseminate information, organise awareness campaigns and provide on-going support for people with Down syndrome and their families. As a result of the Lotto funding, I was also given the opportunity to attend the Policy Processes and Disability Rights course at University of Cape Town in July 2014. DSSA wishes to thank the National Lotteries Board for their continued support.
John Dikgale, Dumisile Khuswayo and Sonia Skein
with the Department of Social Development hosting the disability sector in Parliament. The representatives of national organisations of people with disabilities, provincial disability forums and government disability rights focal persons participated in the five commissions aligned to the five national priorities: improving health, improving education, job
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creation, fighting crime and rural development. The delegates also had an opportunity to learn about parliamentary processes. The parliamentary sitting took place on 3 December 2014; the disability sector reported back on the findings of commissions and determined the disability rights agenda for parliament for the next five years.
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Awareness & Fundraising Momentum 947 Cycle Challenge The Ride for a Purpose Campaign has proven to provide an incomparable platform for cyclists to create awareness about personal causes that are close to their hearts, and this year is no different. To date, hundreds of individual entrants, charities and organisations have chosen to heed this call to action, so why not join them?
on your behalf, to DSSA at absolutely no cost to you! Log onto http://www. downsyndrome.org.za/docs/ MyschoolDSSA.pdf if you would like to become a beneficiary or would like to change your beneficiary / add us as your beneficiary. Alternatively phone us on 0861 369 672 or email Wilna for a form on dssa.odo@ icon.co.za and we will send one to you.
Over R12.5 million was raised for charity in 2013. 2014 was the first year DSSA took part with 20 Cyclists raising R 36,620.00 for DSSA. Imagine if we had more cyclists! Please gather all your friends and join us for a funfilled day. Information regarding this year’s race will be added to our website.
For WDSD 2015, DSi will focus on: ‘My Opportunities, My Choices’ – Enjoying Full and Equal Rights and the Role of Families - see https:// www.worlddownsyndromeday. org/wdsd-2015 National Down Syndrome Day (Genes Day) 20th October Read each of our branches’ articles to see what activities they did in their areas, as National Down Syndrome Day was celebrated across the country in various ways.
MySchool MyVillage MyPlanet MySchool MyVillage MyPlanet is one of South Africa’s biggest fundraising programmes and allows you to make a difference, just by shopping. Every time you swipe your card at any of the 12 national or numerous local partners they’ll make a donation,
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World Down Syndrome st March Day (WDSD) 21 celebrations in South Africa 21 March 2015 marks the 10th anniversary of World Down Syndrome Day and each year the voice of people with Down syndrome, and those who live and work with them, grows louder.
For the 10th anniversary of World Down Syndrome Day and in the ‘21st anniversary year of the ‘International Year of the Family’, DSi will focus on the role of families and the positive contribution that they can make towards the enjoyment of full and equal rights for people with Down syndrome. Once again in 2015, we will be inviting everyone across the world to wear LOTS OF SOCKS on 21 March to get people talking about WDSD. Whatever you do, we hope
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together that we will create a very loud single global voice for advocating for the rights, inclusion and well being of people with Down syndrome on 21 March.
Casual Day 2014 “Bring out the Bling” - What an amazing campaign for 2014! We had several schools and businesses who supported this initiative. Five of our Branches participated. A total of 4932 stickers were sold by them and 4479 by DSSA.
Casual Day 2015 … SPRING INTO ACTION - On Friday 4 September! There’s a sweet smell in the air, the sounds of the birds, and hints of warm summer to come. It’s a time of rebirth, of new beginnings. We have woken up from our winter grind with opportunities sprouting right
and left. It’s a time of good intentions, cleaning, tidying and updating our lives. It’s time to clear out your cupboards - get rid of the old and bring in the new. Casual Day traditionally coincides with the first week of Spring, so this year we have decided to truly celebrate Spring, a time for joy, a time for smelling the flowers, and just enjoying the awakening of the season. It’s on this day that the Casual Day community takes time out to celebrate persons with disabilities and to make sure that we are all just one big family. This creativity is bursting out all over and we are dressing up or down in our Casual Day outfits.
The theme for Casual Day 2015 is… SPRING INTO ACTION! Take your inspiration from the birds and the bees, the skies of blue, the colours of the rainbow, the blossoms on the trees and the minty hue of new leaves. The colour for the year is refreshing, zingy mint. The official Casual Day T-shirt will be produced in this fashion forward colour. You can contact us on 0861 369 672 or dssaoffice@icon.co.za or dssa.odo@office.co.za to order your stickers and merchandises. Keep abreast of activities of Casual Day on their Facebook page at www.facebook.com/ CasualDaySA or Twitter: @ CasualDay_SA
DSSA MERCHANDISE FOR SALE Contact dssaoffice@icon.co.za or 0861 369 672 for an order form
Light Blue Cap with Navy detail and DSSA Logo in Navy Red Cap with Navy Peak and World Down Syndrome Day Logo in Blue, Red and White 55mm Round Metal Pin Badge with WDSD Logo Education Support Pack “Keep Calm, It’s only an extra Chromosome” t-shirt
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International News
by Vanessa dos Santos – President DSi (2012-2015)
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own Syndrome International (DSi) is a UK based international charity, comprising a membership of individuals and organisations from all over the world, committed to improving quality of life for people with Down syndrome worldwide and promoting their inherent right to be accepted and included as valued and equal members of their communities. One of the main events annually is our World Down Syndrome Day (WDSD). The date for WDSD being the 21st day of the 3rd month was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome, which causes Down syndrome. On 19 December 2011, the United Nations General Assembly declared 21 March as WDSD. The General Assembly decided to “designate 21 March as WDSD, to be observed every year beginning in 2012;” and “invites all Member States, relevant organisations of the
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United Nations system and other international organisations, as well as civil society, including non-governmental organisations and the private sector, to observe WDSD in an appropriate manner, in order to raise public awareness of Down syndrome”.
organisations, parents and people with Down syndrome, to empower them to advocate for the right to basic living standards, medical care, education and acceptance into society, and importantly allow people with Down syndrome to advocate for themselves.
Today, DSi co-ordinates the WDSD website (as a single global meeting place to share WDSD World Events), the WDSD Global Video Event “Let Us In!”, the WDSD Conference held at the United Nations Headquarters in New York, USA on 21 March, the LOTS OF SOCKS campaign and the WDSD Awards. This years event will take place at the UN on the 20th March theme is “My Opportunities, My Choices” – Enjoying full and equal rights and the role of families.
DSi is the only international network advocating for people with Down syndrome and our contacts include advocacy groups in over 100 countries. Our framework and reputation enables us to utilise the expertise of internationally recognised professionals and channel it towards those who need it in regions where little public support is given to people with Down syndrome and their advocates.
In addition to our annual WDSD conference we also host the World Down Syndrome Congress held every three years in a different country. The next one takes place in Chennai, India in August 2015 (See next page for more information). An area that is equally important to us is our Outreach programme. Through “Reach Out”, we can provide training and support to professionals,
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To read more about DSi’s aims and objectives and to find our more about our organisation please log onto www.ds-int.org
Vanessa, her son Steven and husband Tony
World Down Syndrome Congress
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own Syndrome International (DSi) together with local hosts The Down Syndrome Association of Tamilnadu is delighted to welcome you to participate in the 12th World Down Syndrome Congress in Chennai, India, 1921 August 2015. The Congress will focus on Panchtatvas – Social Awareness & Self Determination, Health, Education & Employment, Support System, Rights and the Law for People with Down syndrome. As this is the most important event on the global Down syndrome calendar, we are putting together a dynamic scientific and social programme, which will cater to the needs of all delegates, policy makers, families and most importantly, persons with Down syndrome.
The scientific programme will feature keynote lectures, state of the art sessions and workshops by international experts who will be addressing topics such as social inclusion, rights, education, health and employment. Running in parallel with this programme, people with Down syndrome and their family members will share their knowledge and experiences in concurrent sessions. Following on from the Congresses held in Cape Town and Dublin, we will continue with the successful and popular interactive workshop for adults with Down syndrome. Called PANCHAYAT, this pre-congress open forum has been developed especially for adults with Down syndrome. It provides a platform for voicing wishes and desires,
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exchanging ideas, and forming friendships. Chennai, India, is a vibrant, colourful, affordable and friendly city with thousands of years of culture and history that will provide an incredible location for what promises to be a truly unique Congress. For the most up to date information including registration, Congress fees and information pertaining to Chennai please visit www. wdsc2015.com Dr Surekha Ramachandran President Down Syndrome Federation of India (DSFI) President Down Syndrome Association of Tamilnadu (DSAT) President-elect Down Syndrome International (DSi)
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Article of Interest - Dual Diagnoses
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e are hearing from people who suspect that their child with Down syndrome (DS) may have Autism or Autism Spectrum Disorder (ASD). This is not unusual at all. In recent years we have seen an increase in children with DS being diagnosed as having ASD. This is also referred to as having a ‘dual diagnosis” or co-existing conditions. The incidence reported is between 5-10% of the DS population. Having DS can make it difficult to diagnose ASD because of the already existing delays and behaviours of children with DS. We don’t really know why some children with DS also have ASD and there is no blood test or scan that can positively diagnose this. What we do know is that the prevalence is higher in males than females and that a dual diagnosis is usually only picked up later than if the child only presented with Autism.
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eople with Down syndrome (DS) have a specific learning style and profile. Parents, Educators and Learners Assistants need to know what these are. This pack will enable you to know what the learning style and profile is, how it effects the learning and how best to support the child during his / her school years. Some of the beliefs that still exist today about
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What is Autism? Autism South Africa describes “Autism as a lifelong, complex condition that occurs as a result of disordered brain growth, structure and development. Autism is believed to stem from a genetic predisposition triggered by environmental factors and affects 4-5 times more boys than girls. There are a vast number of ways that a person can manifest their autism and as a result this condition is now more often referred to as “Autism Spectrum Disorders”(ASD). ASD is a lifelong, extremely complex condition that appears to result from a genetic predisposition that is triggered by environmental factors. ASD is characterized by: 1) Difficits in social communication and social interaction and 2) Restricted repetitive behaviours, interests, and activities (RRBs). Inclusive Education Support Pack children with DS is the belief that they can’t be educated and there is very little to expect from them except to keep them in institutions where they live their short lives. This belief is beginning to prove people wrong. Contact us on dssaoffice@icon. co.za or 0861 369 672 for more information or to order yours.
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In short, if your child with DS makes little or no eye contact, has odd behaviour, rocking or repetitive ways of moving, loss of language or social skills and preoccupied with unusual objects and prone to tantrums when interrupted, then you may want to ask your family doctor for a referral to a developmental paediatrician for an assessment. Although bear in mind that diagnosing comorbid ADS in individuals with DS can have its own set of social communicative and behavioural difficulties that are not well documented. For more information check out Autism South Africa http://www. aut2know.co.za/understandautism.php Ref: http://7thspace.com/headlines/502626/ patterns_of_autism_spectrum_ symptomatoloty_in_individuals_with_down_ syndrome_without_comorbid_autism_ spectrum_disorder.html http://www.iancommunity.org/cs/related_ disorders/autism_and_down_syndrome http://www.down-syndrome.org/updates/341/
My story
by Caryn Tibshirany
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he 12th March 2014 we were expecting a new addition to our family. The excitement was unimaginable. I had even marked this special day in my diary as “ Junior arrives :-) ‘’.
were advised that our beautiful son has a type of Down syndrome known as Trisomy 21.
When Junior arrived, we were all delighted. We automatically fell in love; it was a natural instinct toward our beautiful baby. Weeks seemed to fly by and it was now time for Jordy’s six week check-up, which was unexpectedly delayed as the paediatrician was only able to see my son at eight weeks. Off we went for Jordy’s appointment on the 16th May 2014, assuming all was well. The day after this appointment, I received a phone call stating that the Paediatrician required certain blood tests to be done on Jordy. We automatically panicked and started to think of the worst. Three days later me and my husband’s world crashed. We
my family. Stage 3 - Acceptance: My son is almost 11 months old and all I can say is that Jordy is my shining star. He brings so much light and happiness into my family. I would not change him for anything in this world. Jordy is loved and adored by his amazing and special sister, 4-year-old Kylie, four grandparents, aunts, uncles and cousins. His physiotherapist and speech therapist adore him too. I know that the list of people who love and adore him will be ever increasing.
A happy Jordy and his loving sister Stage 1 - Grieving: The tears seemed to be endless. I was mourning the loss of the child I thought I had. Stage 2 - Anger: After the tears had subsided, I found myself asking what I had done in my life to deserve this. I was extremely angry and aggressive towards
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esides resources that are available on our own website - www. downsyndrome.org.za, you might find the following helpful as well:
Centre for Augmentative & Alternative Communication, University of Pretoria, http://www.up.ac.za/centre-for-augmentative-alternativecommunication
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We are doing everything in our power, regarding early intervention, to try and assist Jordy to be the absolute best Jordy that he can possibly be. We are certainly scared for what the future holds but live one day at a time. Jordy is our son who we absolutely love and adore.
Remember!! Casual Day 4 September
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A Family’s story
by Odette Kemp with permission from ‘Die Burger’ ‘Hy het werklik ons lewe verander’ “Hy is 2½ kinders in een: Daar is baie uitdagings, maar ons vier ook die klein dinge met soveel meer vreugde.”
“En hy is oukei, op sy eie manier.” “Hy is nes enige ander kind van sy ouderdom; hy geniet dit om buite te speel en is baie energiek. Soms gee hy voor dat hy ’n brandweerman is en ‘blus’ sommer brande met die tuinslang.” Nathan helder op wanneer sy ma of pa Colin van swem of visvang praat, en hy wil selfs vanjaar aan die Ironkidz deelneem.
Colin, Nathan, Samantha en Kayla Barris
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ó beskryf Samantha Barris van Port Elizabeth die lewe saam met haar seun, Nathan (6). Nathan is gebore met Downsindroom, maar niks kan sy lewenslus demp nie. “Ek het my nooit vir die toets aangemeld nie,” bevestig Samantha. “Ek was te bang vir naalde, en die uitslae van my bloedtoetse het normaal gelyk. Dit sou in elk geval nie vir ons ’n verskil maak nie. Wat ook al die uitkoms was, ons sou nie die swangerskap beëindig nie.” Met Kayla, Nathan se sussie (4),
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was sy wel bekommerd, erken Samantha “Die bloedtoetse het baie anders gelyk as met Nathan, maar die gedagte dat sy ook Downsindroom kon hê, het in my agterkop gebly totdat sy gebore is.” Die ondersteuning van haar en Colin se familie het hulle deur die eerste maande van Nathan se lewe gedra. “Dit het eintlik almal nader aan mekaar laat groei. Toe hy gebore is, het almal reeds vermoed hy het Downsindroom, maar ek het aanhou glo hy sal oukei wees.”
Sibaleni Nathi - Volume 11 - 2015
“Alles wat ons doen, is om sy ontwikkeling aan te help,” verduidelik Samantha. “Kinders met Downsindroom het gewoonlik swak ontwikkelde spiere. Ons moedig hom dus van kleins af aan om self dinge te doen. Hy het self geleer om regop te sit, en hy kry baie oefening deur buite te speel.” Hulle sorg ook dat Nathan intellektueel gestimuleer word deur Lego-boublokkies, opvoedkundige speletjies en legkaart-bou saam met Kayla. “Dit is soms moeilik met twee kinders, want Nathan vereis meer aandag, maar ons moet steeds seker maak dat hulle albei ewe veel van alles ontvang,” vertel Colin. Die Barris-gesin het voorheen in St. Francisbaai gewoon, maar het intussen na Port Elizabeth verhuis.
“Samantha moes drie dae per week Port Elizabeth toe kom met Nathan, sodat hy die nodige sorg en terapie kon ontvang,” verduidelik Colin. “Toe besluit ons om eerder ’n huis hier te koop – een met ’n groot agterplaas waar hy kan speel.” Samantha vertel: “Dis reeds ’n groot aanpassing om ouers te word, maar met Nathan het ons al die ekstra, spesiale dele bygekry. Hy het werklik ons lewe verander – op die beste manier.” Daar is egter ’n hele paar uitdagings wat met Downsindroom gepaardgaan, erken Colin. “Kinders met Downsindroom verskil van mekaar, maar hulle ontwikkel stadiger as ander kinders. Met Nathan het ons die ‘baba-fase’ ongeveer vyf jaar gehad.”
Dit is egter moeilik om Downsindroom te verduidelik aan mense wat dit nog nie teëgekom het nie, sê Colin. “Ek vergelyk dit gewoonlik met hoe jy sou voel as jy gereedmaak vir ’n vakansie in Italië en dan in Switserland beland – dis steeds ’n wonderlike ondervinding, selfs al is dit nie heeltemal wat jy verwag het nie.” Gelukkig kon die gesinslede hulle in ’n roetine vestig. Nathan en Kayla gaan albei na die Montessori-skool in Walmer, terwyl Samantha en Colin elkeen ’n eie onderneming bedryf. “Op dié manier kan ek my werktye rondom my kinders bepaal – iets wat ek nie met ’n ander pos sou kon doen nie,” verduidelik Samantha.
Colin glo ook hul ondernemings kan in die toekoms handig te pas kom vir Nathan. “Ons wil hom voorberei om ná skool te werk en deel van die gemeenskap te wees. As dit nodig is, sal ek hom selfs kan aanstel om vir my te werk. “Ons wil weet dat hy sy eie lewe kan lei as ons eendag nie meer daar is nie – dit is tog elke ouer se bekommernis.” Die toekoms waarin Nathan tans belangstel, is egter ’n jolige een. “Hy word in April sewe jaar oud en het besluit hy wil ’n riddertema vir sy partytjie hê, met skilde en swaarde – maar die swaarde klink nie vir my na ’n goeie idee nie,” vertel Samantha laggend.
Die ondersteuning van ander ouers met Downsindroomkinders is ’n groot hulp vir die gesin. “Ons het by die Port Elizabeths Downsindroomvereniging (PEDSA) betrokke geraak en daardeur ouers in soortgelyke omstandighede ontmoet. “Tot nou toe kom die ma’s gereeld vir koffie bymekaar. Dan bespreek ons ons ondervindings en leer ons by mekaar,” vertel Samantha.
Kayla en Nathan Barris op die springmat Artikel geplaas met die vergunning van Die Burger en aangespas vir hierdie tydskrif. Oorspronklik geskryf deur Odette Kemp, fotograaf Werner Hills - Maart 2014.
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An Inspirational story by Mary Klinkradt
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n a sunny and very windy day in March 2014, David Klinkradt, 8 years old, participated in his first full Pick ‘n Pay Momentum Argus Cycle Tour in Cape Town. David, who has Down syndrome, Autism and Epilepsy was invited to participate as a rider for the Chaeli Campaign, to raise awareness around disability as a different ability. David participated in the recumbent category, which means that he was a rider in a buggy attached to a bicycle that was pulled by some-one else. In his case, the incredible Brett Chilcott.
David and Brett before the start of the race David and Brett met for the first time 4 weeks prior to the race, for their first ever training run. Things didn’t start off so well, with David using every possible opportunity to remove his
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Ready to go! cycling helmet and throw it at Brett’s back. Unfortunately, his aim is rather good, so contact was made on several occasions! Brett was determined, however, and David enjoyed it, so we persevered. After adding some extra padding into the helmet around the back of his neck (where he has a sensitive scar following spinal fusion for Atlanto-axial instability), the helmet stayed on, and training began in earnest. The team was affectionately named Turbo, inspired by the movie of the same name, and on the 9th of March they set off to conquer the 109km long ‘Argus’. After a tough start, of howling winds, and David getting anxious with all the noise, people and activity surrounding him, they headed off. The team consisted of three riders, David, Brett and Peter, a support rider, whose role is to make sure other cyclists are aware of the buggy and their proximity to it, and also to make sure David is okay in the back.
Sibaleni Nathi - Volume 11 - 2015
The race was a tough one, but both David and Brett really enjoyed it. They completed the Argus in 04h43, and were the first buggy team home. They are currently training, with a new, more aerodynamic buggy, for this years Cape Town Cycle Tour, which will be taking place on the 8th March.
David with his medal Information on David: David is unable to ride a bicycle due to extreme ligament laxity which affects all his joints. He wears foot orthotics to support his ankles, and knee braces to stabilise his knees and reduces pain. He also had surgery to stabilise his neck due to atlantoaxial instability, which was also partly due to ligament laxity. David also has autism, and suffers from non-convulsive seizures.
Sibling’s persective
by Ashlyn Klinkradt (Original Text) Ambassadors program, which has motivated and encouraged me to continue raising awareness about different disabilities. Written by Ashlyn Klinkradt
Ashlyn Klinkradt (11) - far right, with David Klinkradt (9) and friend Hannah Humphrey (11)
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ast year on Down Syndrome Awareness Day in October, my friend Hannah, my brother David and I spoke to the Grade 4 and 5 learners at our school about Down syndrome. Hannah and I spoke about what Down Syndrome is and how it can affect people. David spoke to us about who he is, and what he likes to do. The children then asked us and David questions about Down syndrome, and life with Down syndrome. They asked what people with Down syndrome can and can’t do, how they learn, and where they go to school. My mom was there to help answer the questions that we couldn’t answer. As the older sister of a person with Down syndrome, autism and epilepsy, life is sometimes different to that of my friends.
We don’t get to do the same outings as other people and I can’t always do the things I want to do, but my brother also makes me laugh and he inspires me with his determination to succeed. It is because of him that I got involved with the Chaeli Campaigns young
(Ashlyn is a Grade 6 learner at Kenridge Primary School in Cape Town. He brother David is 9 and has Down syndrome, Autism and Epilepsy, and is homeschooled. They have a younger brother, Jayden, who is in Grade 1 at Paarl School for the physically disabled. Hannah is also in Grade 6 at Kenridge Primary School and has a brother, Joah, who also has Down syndrome and Autism. This is the second year that Ashlyn and Hannah have spoken to the grade 4 and 5 learners at their school about Down syndrome, Autism and physical disabilities, and they will be doing it again in 2015)
Hannah and David love swimming together
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Sport - World Down Syndrome Swimming
Championships by Barbara Higgins
T
he 7th Down Syndrome World Swimming Championships (WDSSC) took place in Morelia in Mexico in November 2014. 197 swimmers from 22 countries participated in the event - 49 female & 137 men. Mexico put on a world class event, ensuring that everyone who attended will have amazing memories. A new state-of-theart swimming pool was built especially for Down Syndrome International Swimming Organisation’s championships. South Africa had a team of 9
swimmers, 5 men and 4 women, and was placed fourth on the medal table. Top team was Australia with Mexico 2nd and Italy 3rd. Individual medal winners were Jennifer Higgins (1 gold, 2 silver & 2 bronze); Pietie Bell (1 gold, 1 silver, 2 bronze); Donnee Dixon (1 silver, 2 bronze); Mariza Holdt (1 silver, 1 bronze) and Hylton Heggie (1 bronze). Jennifer Higgins was placed 4th overall individual female swimmer and Pietie Bell 7th overall. The SA men’s team did well in the relay races Tyrone Rademeyer, Sean O’Neill,
Pietie Bell & Hylton Heggie. There was also a competition for Synchronized Swimmig. There are other sporting codes available for persons with Down syndrome. More details on website: http://www.su-ds.org/ The World Athletics and Table Tennis Championships will be taking place in Bloemfontein, South Africa, 22-28 November 2015. Submitted by Barbara Higgins Record Officer Webmaster (www. dsiso.org )
Back: Tyrone Rademeyr, Pieter Bell (Asst Coach, WP), Ingrid van der Westhuizen, Albert Warnick (HOD – SASA-II), Johan Hugo, Ina Fowler. Middle: Pietie Bell, Rentia Oosthuizen, Mariza Holdt. Front: Julia Legodi, Donnee Dixon, Jenna Higgins, Hylton Heggie, Sean O’Neill
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Sibaleni Nathi - Volume 11 - 2015
World Down Syndrome Swimming Championships - Gold Medallist by Pieter Bell
P
ietie Bell born 02/04/1991, has been training with Coach Ingrid van der Westhuizen at WHF Swimming Club since the age of 14. He has been travelling to Worcester from his home town Prince Alfred’s Hamlet since then (a distance of 130km) everyday. His family moved to Worcester in 2013 in order to save on traveling expenses. He does between 11 and 13 training sessions per week doing between 3.5-4.5 km per session. Pietie is currently the top male Down Syndrome Swimmer in SA in both the Short Course and Long Course.
RECORDS 1. 200m Freestyle, 2. 400m Freestyle, 3. 800m Freestyle, 4. 1500m Freestyle, 5. 200m Backstroke, 6. 200m IM
MALE SA SHORT COURSE RECORDS 1. 400 Free 5:50.07 2. 800 Free 12:15.31 3. 1500 Free 23:22.12 4. 200 Back 3:09.81 5. 25 Fly 15.75 6. 200 IM 3:06.15 MALE WORLD SHORT COURSE RECORDS 25m Butterfly AFRICAN LONG COURSE
RECORDS 1. 50 Fly 35.11 2. 100 Fly 1:27.83 3. 200 Fly 3:43.26 4. 200 IM 3:17.67 5. 200 Free 2:45.40 6. 400 Free 5:51.70 7. 800 Free 12:33.66 8. 1500 Free 24:56.91 9. 200 Back 3:17.22 AFRICAN RECORDS: 1. 2. 3. 4. 5. 6.
SHORT
COURSE
400 Free 5:50.07 800 Free 12:15.31 1500 Free 23:22.12 200 Back 3:09.81 25 Fly 15.75 200 IM 3:06.15
In 2014 during the DSISO World Championships in Morelia, Mexico he got gold medals in the 1500m freestyle and 4 X 50m freestyle and silver medals in the 400m freestyle and the 4X 200m freestyle and bronze medals in the 800m freestyle , 200m freestyle, 4 X100m medley relay and 4X50m medley relay events pocketing a total of 2 gold, 2 sliver and 4 bronze medals. Pietie holds the following SA records: MALE
SA
LONG
COURSE
Pietie Bell with his Gold Medal for the 1500 Freestyle
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World Down Syndrome Swimming Championships - “Feeling Good” narrated by Rene Oosthuize
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m deel te wees van ‘n gelukkige gesin, laat my goed voel. Ek is die oudste van drie kinders en ons woon in ‘n klein plattelandse Dorpie Middelburg in die OosKaap. Ek is Rentia Oosthuizen en is 22 jaar oud. My ouers het my as normaal grootgemaak en ek was gelukkig om ‘n normale skool by te woon van Graad R tot graad 7. My sussie is toe na ‘n skool in Bloemfontein en ek wou ook na ‘n skool in Bloemfontein gaan.
‘n Baie trotse Rentia in haar sweetpa
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Ek het geweet ek kan nie na haar skool gaan nie, want daar is geen ander kind met Down sindroom in haar skool nie. My ma het my toe geneem na ‘n spesiale skool en dit was Lettie Fouche. Daar het ek die geleentheid gekry om te swem. Ek het dit baie geniet en ook skielik baie medaljes gekry. Ek het ook in hul koor gesing en ons is na die Drakensberg Seunskoor toe. Om te swem was ‘n goeie keuse en dit maak my baie gelukkig.
laat besef dat ek nie die enigste Down is nie. Ons moet net elkeen ons talent wat God ons gee gebruik na die beste van ons vermoens.
Na skool het ek teruggekom huis toe, waar ek as ‘n ” juffrou” by die Trotse familielede neem afskeid van Graad R klas was. Ek het weer Rentia op die lughawe begin swem en my ouers het uitgevind van die SASAII swem Ek was ook ‘n finalis in die OosKampioenskappe waar ons slegs Kaap Departement Sport Kuns Down’s teen mekaar kompeteer. en Rekreasie se toekennings vir My eerste kampioenskappe was Sportvrou van die Jaar met ‘n in die Kaap. Ek het daar medaljes gestremdheid. verower en ek het dit baie geniet. Dit laat my goed voel omdat ek Die tweede en derde weet God is lief vir my (en ook vir Kampionskappe het ek ook jou) net soos ons is en Hy gee ons medaljes verower en op hierdie talente en ons moet dit gebruik. derde Kampioenskappe is ek aangewys as die ‘Best Improved Down’ en is ek ook gekies om aan die wereldspele vir Downs deel te neem in Mexico. Om jou land te verteenwoordig was ‘n ongelooflike ‘feeling good’ oomblik. Om so baie ander Down sindroom swemmers te sien, het my
Sibaleni Nathi - Volume 11 - 2015
Annual Cricket Tournament by Elmien Botha wen elke keer die “Geesbeker”. Johan Loots van Uitkoms word ook aangewys as die beste bouler. Gedurende 2014 is dit Uitkoms se beurt om die toernooi aan te bied in Pretoria. Wat ’n belewenis!. Hierdie keer verbeter Uitkoms se kolfen boulvermoë en hulle eindig tweede. Met hulle nuwe uitrustings lyk hulle ook die heel mooiste! Wimpie, derde van links ,saam met sy spanmaats
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ns seun, Wimpie Botha, is in Uitkoms versorgingsentrum. Dit is ’n privaat versorgingseenheid wat in die Noorde van Pretoria geleë is. Drie jaar gelede (in 2012) ontstaan daar ’n gedagte by die Koshuis”pa” om ’n krieketspan by Uitkoms Versorgingsentrum te begin. Dit word met GROOT entoesiasme ontvang en sommer gou-gou word daar ywerig geoefen. Uitkoms word uitgenooi deur die Connie Mulder Sentrum in Randfontein en met entoesiastiese ouers
wat opruk Randfontein toe, speel Uitkoms hulle heel eerste Krieketwedstryd! Uitkoms verloor met oorgawe maar wen die Beker vir die “Mooiste Gees!” Daar word besluit om hierdie Krieketwedstryd ’n jaarlikse instelling te maak en gedurende 2012 toer die Krieketspan van Pretoria na Kimberley waar hulle met groot gasvryheid ontvang word en speel daar ’n klein minitoernooi. Uitkoms, Randfontein se Connie Mulder Sentrum en die Sentrum in Kimberley speel 3 dae krieket! Uitkoms sukkel om lopies te kry maar hulle
Sibaleni Nathi - Volume 11 - 2015
Wat my veral sal bystaan van hierdie geleenthede is die wonderlike gees wat daar tussen almal heers. Niemand is bekommerd oor wen of verloor nie. Al die spanne ondersteun al die spelers. Maak nie saak watter span ’n goeie bal slaan of boul nie – almal is op hulle voete en word gelukgewens en ontvang hartlike applous. Is dit nie hoe sport behoort te wees nie? Ons ouers se groot dank aan “Pa” Willem van der Ryst wat hierdie besondere geleenthede moontlik gemaak het!
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Self Advocacy - My December Holidays by Thenjiwe Ndebele (Original Text)
“My summer holiday was interesting”
I
first went to my Granny’s place in Marimba Gardens – Vosloorus, it is not a long a long distance from my home in Cosmo City – Randburg. This time I went alone, not with my bother as usual. He is now 17 years old. He is in grade 12.
birthday, so my mom fetched me, my granny and my other aunt Lala and we went back home. She bought a cake for my brother and we had nice food at home.
In Marimba I have other cousins that are very nice to me, when we are together we have a lot of fun. On the 16th of December we went to a picnic with my aunt Nolihle and her handsome little baby boy Okuhle. He is soo cute. Thenjiwe and her lovely mother, Siza Ndebele I also got Christmas Presents. My mom bought me a new duvet cover (Pink) and jewellery, and my aunt bought me a dress and sandals. I felt very spoiled. Thenjiwe Thandekile Ndebele
Thenjiwe’s brother, Gcinikhaya Jnr On the 19th it was my brother’s
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Christmas day we woke up early in the morning and my mom was cooking as usual. She likes to cook Christmas day. Our house was full my cousins, my brother and my aunts. We all had fun. In the evening we went to Monte Casino in four ways and we were there until very late at night.
Sibaleni Nathi - Volume 11 - 2015
For New Year’s Eve we went back to Marimba again, it was nice. We burnt the fireworks and danced to the music. My aunts and Uncles were all there with my cousins. Only my mom that was away on holiday. But it was very very nice. What a holiday. My life is the best.
Self Advocacy - My 40
th
by Hayley Rehbock (Original Text)
Hayley and her mother, Louise
O
n Thursday morning my mom said to me I can’t go to drama on Thursday night because she has a big surprise for me so we went for a drive to the V&A Waterfront and we walked around got some frozen yogurt there. I saw my mom doing something on her cell phone I did not know want she was doing. Then we walked down To the Big wheel and there was two people walking behind us As I trend around I saw Joris and Therese that night I was so surprised to see them. My face was all red I did not know there were coming down to South Africa to celebrate my 40th birthday and to my party. That was on a Thursday Night Me and my mom Took Joris and Therese site sea at Hermanus on this day the weather was not nice we all want for a walk around the market and then
bed that night.
we All want to get something to Drink and then we drove back home we Took Joris and Therese back to they Hotel. And we want back home on that night. I was sick I took my vitamins C before I went to
Birthday so excited when I saw it And my friends too - we all got into the limo and drove out of Kenilworth Park. The limo driver took us for a drive nine to Camps Bay while the sun was setting in the background and then to the restaurant we need to be there. When I got there some of my guests were outside waiting for us to arrive they took photos of us. We went inside the restaurant there were two big Tables for me and my guests and a table that had my dolphin birthday cake on it – it was such a lovely surprise to see it. We had dinner and partied all night there was a photo booth where we took lots of photos and it was a lot of fun. I blew out my candles and everyone sang happy birthday to me. My dream birthday party came true for me in 2014.
18/10/2014 The Big day I was sick in bed in the morning of my birthday I took my Vitamins C and stead in bed that Morning my mom said to me to get out of bed and get dress and I did that. All of my guests came to my home we all sat outside my back grand of my home Then Joris and Therese came to my home. Ian’s friend Michelle took photos of all of us in the back grand Of Our home Then my mom Louise said we need to leave now, when I walked out of the front door I saw a dark pink limo parked outside my home I was Hayley admiring her “Dolphin” birthday cake
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Self Advocacy - My Visit to Oxford by Sheri Brynard (Original Text)
V
oor ek en my ma Oxford toe is het ek en sy gou vir ‘n paar dae by Marisa-hulle gaan kuier in Londen. Marisa het verlof geneem en ek moet sê my klein sussie is ‘n baie oulike ma vir klein Josua. Ek dink ek is ‘n baie oulike Tannie ook vir hom, want ek maak hom gou aan die slaap as hy vaak is en hy geniet dit wanneer ek vir hom boekies lees, soos my ma altyd vir ons gelees het. Sjoe, maar hy is ‘n slim kind en hy kan nou al vinger kossies eet en ook yoghurt, pap en groente en hy het ook nou al paar tandjies in sy mond. Die oggend na Marisa se verjaarsdag op 9 Desember, het ek en my ma begin pak om Oxford toe te “travel” soos hulle dit noem. Dis wanneer mens trein of bus ry om iewers te kom. Wanneer jy met die kar ry is dit nie “travel” nie. Dan ry jy net. My klein sussie Marisa het ons by die stasie gaan aflaai en dit was vreeslik koud. Ons moes van New Eltham met die bogrondse trein ry tot by London Charing Cross station. Dan moes ons met die ondergrondse treine na Paddington stasie toe ry en van daar af weer met ’n bogrondse trein tot by Oxford. By Paddington stasie moes ek en my ma wag vir die trein en toe net daar breek ons groot swart tas se handvatel waarmee ons hom getrek het. Dit was toe ‘n gesukkel om die tas te trek en
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Sheri (Links) en haar suster, Suzette Brynard, op haar troudag ek wou so graag vir my ma gehelp het, maar ek kon nie eintlik nie. Die tas het op my groot toon beland.
4 uur in die middag donker daar in die winter en so is die dae baie kort en die nagte lank. Dis nogal vreeslik interessant.
Uiteindelik was ek en my ma veilig op die trein na Oxford en dit was ‘n hele end se ry. Op pad Oxford toe het my oë ewe skielik toegeval en toe ek wakker word, was ek en my ma veilig in Oxford. Toe moes ons al die pad met die gebreekte tas en al na ons blyplek toe loop, wat gelukkig naby die stasie was. Dit sou nie so moeilik gewees het as die tas net heel was nie. Dit word ook al
By ons blyplek aangekom het ons uitgepak en toe het ons bietjie gaan rondloop in Oxford. Dit was koud, nat en donker, maar my ma het gelyk of sy dit geniet. Ons het later gaan kos koop en in die kamer gaan eet. Verder was ek en my ma net rustig. My ma was besig op haar laptop en ek het ‘n lekker Afrikaanse boek gelees. Die boek wat ek gelees het se naam is “Koshuis koffie”
Sibaleni Nathi - Volume 11 - 2015
van Christien Neser. Sy was my ma se Sub A maatjie en sy skryf baie boeke. Ek hou vreeslik van Afrikaanse boeke en sy het dit vir my gegee toe ons eenkeer by haar gebly het toe ek in Johannesburg gepraat het. Eerste dag van die kongres Ek en my ma het heerlik geslaap in Becket Guest House in Oxford. Wat vir vreeslik voorspelbaar was, was dat die handdoeke waarmee ons, ons moes afdroog as ons klaar gestort het, nogal vreeslik klein was. Dis altyd so in Engeland. Ek dink dis omdat ons nie in duur hotelle bly nie. Dit was die hele dag bewolk en reënerig, maar dit was darem nie so koud soos die vorige dag nie. Ons moes in elk geval warm klere aantrek. T oe ons die eerste oggend van die kongres klaar aangetrek was, het my ma die taxi gebel om vir my en my ma te kom haal. Die persoon wat die taxi bestuur het moes vir my en my ma na die Oxford Union House toe neem, waar die kongres die eerste dag aangebied is. Sjoe ons het gesukkel om by die plek uit te kom. Op die ou einde het ons die plek gekry, maar my ma was sopnat gereën omdat sy elke keer uitgeklim het uit die taxi om te gaan vra of ons op die regte plek is. Dit was die mooiste ou gebou met groen gras en bome om die gebou. Daar was eekhorings in
die bome en binne was daar dik matte en baie, baie boeke.
Die geleerde mense wat by die kongres gepraat het, het natuurlik English gepraat en ek moes baie konsentreer om te verstaan wat hulle alles sê. Ek moet ook sê dat ek baie belangrik gevoel het tussen al die geleerde mense. Dit het vir my gevoel asof my Hemelse Vader my baie bederf. Na die dag by die kongres het my ma weer in Oxford ingevaar en ons het eers na 6 uur (in die donker) die aand by ons gastehuis aangekom. Ek het daai aand nog 1 keer my toespraak vir myself geoefen en my ma het haar referaat ook geoefen vir die volgende dag.
vertel dat my ma so gestres het, want sy moes ook praat en haar power point lewer. In Londen se tyd moes 10 oor 11 praat en dit is 10 oor 1 in Suid Afrika se tyd. Toe ons in die vertrek gekom het, waar ons sou praat, was daar net 10 mense. Dit het my ma weer laat stres. Maar net voor ek gepraat het, het die mense by my sessie ingestroom. Ek kon nie glo dat soveel van daardie slim mense gekom het om vir my te kom luister nie. Nadat ek klaar gepraat het, het al die mense vir my 2 keer baie hard hande geklap. Baie mense het vir my kom geluk wens dat ek so mooi praat het en dat ek die Here die eer gegee het vir wie en wat ek is. Dit het vir my so spesiaal gevoel om te kon getuig wat my Hemelse Vader vir my beteken het in my lewe. Ek kan net vir Hom vreeslik dankie sê daarvoor dat Hy my na Oxford toe gestuur het.
Ek tree as gasspreker by “Rhodes House” op Ek en my ma het vreeslik lekker geslaap en ek het wakker geword met ‘n lekker koppie koffie. Ek het toe dadelik begin stort en hare gewas en my hare het so mooi geblink. Ek het my swart langerige rokkie aangetrek en ek het soos ‘n feë koningin gevoel. Terwyl ek en my ma vir die taxi gewag het, het my ma vir my gebid en ook dat die Here ons sal sëen terwyl ons praat. Ek moet
Om in Oxford af te sluit, het my klein sussie Marisa vir ons almal by ‘n “Travel Lodge” bespreek en dit was so vreeslik lekker om net weer by my klein sussie Marisa en Josua te wees. Die aand het ons toe lekker saam gaan uiteet. Die volgende dag moes my klein sussie en haar seuntjie Josua vir my en my ma by Heathrow lughawe gaan aflaai en daar het ons almal met ‘n lekker Starbucks koffie die besoek aan Engeland afgesluit.
Amper alles binne die gebou was van hout en daar was baie foto’s van bekendes wat al daar was, soos Albert Einstein. My ma sê hy was baie slim.
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Branch News - Amathole
D
SAA has experienced some challenges during 2014 where we have learnt from the experience, and continue to grow. Without our dedicated team being Branch Director Denise Taylor who with the support of Alta Brink kept the wheels turning in the office, our Outreach coordinator Deborah Noble, Mdantsane Self Help Group run by Mavis Buya, Parkside Self Help Group run by Deborah Noble and committee, we would not have been able to create more awareness around Down syndrome in society and also educate and assist families of children born with Down syndrome and the general public. Public Awareness Interviews done on the following radio stations: LinkFM, Mdantsane FM, IzwilethembaFM and TruFM and we were able create public awareness around Down syndrome. We were also featured in local magazines: The Go & Express, The Suburban Bugle in Gonubie where awareness around Down syndrome was created. Sonia Skein and Zimkita Bota Metele also did talks on Down syndrome. Fundraising Without our continuous fundraising events and donations of money received during the year we would not be
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able to service our community. The following fundraising events were held during 2014: • Annual Street Collection – This took place in March with the help of friends and family and the support of businesses where we try and man as many points as possible on the day to create awareness amongst the public as well as raise funds. • Builders Express: We were granted permission to stand outside Builders Express on four occasions during the year to sell boerewors rolls to raise funds as well as create awareness. • DSAA Golf Day: This took place at East London Golf Club. Without the help of a main sponsor “Mpact Corrugated” and the support of all the other sponsors of tees, greens, prizes and East London Golf Club we would not have had a successful golf day. Thank You to everyone for the support given. • Kims Antiques – We have a little coffee shop that operates when auctions are held where we sell coffee, teas and cakes to raise funds. • Our annual Awareness Tea was held in October, which is one of our main fundraising events. This always proves to be a very successful event amongst the ladies who love to come along and see the children with Down syndrome dancing and entertaining them as well as win
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wonderful prizes donated by the various businesses. We would like to take this opportunity of thanking the “Hotel Osner” for the donation of the venue as well as all the businesses for the prizes, hostesses for hosting of tables and friends, family and members of the public for supporting this fundraiser. • Casual Day in September and National Down Syndrome Day (20th October) stickers were sold for extra funds and also to create awareness. Self Advocates During 2014 some of the Self Advocates attended the craft workshop held for Self Help Groups. A few of our Self Advocates enjoyed a “Putt Putt” outing. A small group of our Self Advocates are involved in a Self Help Group with Deborah Noble in Parkside. A number of Self Advocates were invited to attend a ballet show “Heidi” at the Guild Theatre. Self-Advocates attend Art Therapy as well as monthly exercise classes regularly. We have become part of a project with CTI students who do art therapy with our children once a month. The children / young adults take turns to attend the sessions and thoroughly enjoy being creative. On the 21st June we had an outing to the Aquarium, which was sponsored by Mr & Mrs
George. The exercise and dance class is an on-going program where we meet once a month at Hamilton Club with the support of Vicky Luff who has co-ordinated the various dance groups to attend and dance with the children. We would like to thank all of the dance groups as well as Vicky for her support during 2014. The Christmas party took place at Hamilton Club in early November 2014 and a Christmas Party without our one and only Father Christmas, Haldane Cunningham would not be possible. Pieter also had the children doing karaoke, which they thoroughly enjoyed, he once again supplied the music.
We would also like to thank Khayalethu Special School’s principal Mr Mdikane and the teachers for their on-going support and commitment to the children.
Self Help / Support group from her home where they create beautiful crafts for a number of years. These are usually on display and available at the Awareness Tea for ladies attending.
Workshops held and attended • An Early Intervention workshop was held for mommies and their newborn babies. • A 2nd workshop with “ The Babygym” for mommies who attended the previous one was also held. • A Craft workshop for the Self Help Groups was held at “Shelley Belles Home”. • DSSA - Access to Justice Workshop was attended by one of our members.
Our Dad’s Support Group run by Xola Metele started up this year, but has not been well supported.
Outreach Our Outreach Program should reach as far as Umtata, Queenstown, Stutterheim, KWT, Mdantsane and Parkside. Deborah Noble who is our Outreach co-ordinator runs this on the 3rd floor at FRERE HOSPITAL on Wednesday mornings and also does home and clinic visits. In July our two Self Help Groups, which are being run by Mavis and Deborah, used this opportunity of having a Madiba Day celebration with their support groups on the day.
Devin-Lee Blumrick holding Baby Maison Timothy Adkins
Self Help / Support Group Mavis Buya has been running a
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General It is on a very sad note that this year, two of our members lost their children, aged only a few months. We had our stalwart of over 16 years, Linda Davis who as a volunteer has been the backbone of the branch for many years by taking on the responsibility of being Chairperson / Vice- / Treasurer / Advisor fundraising and doing whatever was necessary to keep the branch operational, decided that she needed to step down from the committee. This is a big loss to the branch and DSSA. Thanks and Acknowledgement From Down Syndrome Amathole we would like to thank all people and businesses alike, without exception, for their continued support and donations (time, money, clothing, printing) and the support we receive from Mrs Pat Martin for the office space. To businesses, schools, friends and family “THANK YOU”
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Branch News - Free State
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t is exciting to know that Down Syndrome Free State (DSFS) is now 10 years old. We have had branch status since June 2013.
Self Advocacy Tineke Hattingh a 19-year old lady with Down syndrome. She gave her first public address at the
were visual and brochures were distributed. Fadila Jooma made arm bracelets, representing the DSFS, which were sold at this Tea.
Parents from the Developmental Resource Stimulation Programme visiting the Bloemfontein Child Information Centre Early Intervention The Developmental Resource Stimulation Programme (DRSP) group is growing constantly with new referrals. Our youngest baby at present is but only a few days old. We have 25 children and active parents visiting the Bloemfontein Child Information Centre.
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Cherry Festival on the 21st November 2014 in Ficksburg. We are proud to have two adults with Down syndrome that can present us at functions. Awareness Cherry Festival – Ficksburg Down Syndrome Free State has benefited from a Lady’s Tea at the Cherry Festival in Ficksburg 21 November 2015. Our banners
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Awareness Boetjiefees – Bultfontein DSFS was invited as special guests to the yearly ‘Boertjie Festival” in Bultfontein from 4 – 6 September. Aletta, Ruben and Dorothy presented on Down syndrome and had newly printed brochures and pull-up banners. Cupcakes and Fizzers were given to the public. Yellow and blue ribbons (Down syndrome
and went through to the first 5 places.
on the 10th and 11th February 2015 by Department of Education.
A modelling agency from Virginia had a soft toy project for DSFS and over fourhundred soft toys were donated to DSFS. All parents located crèches in their communities and after the Christmas Party of 2 December they distributed the soft toys to thirty two crèches in the Free State. This was a way to do advocacy for DSFS.
Christmas Party 2 December we had a successful Christmas Party.
Susette and Sheri Brynard, Dorothy Russell and Erna Marx with baby Christie from Brandfort colours) were pinned to visitors. 156 people visited the stall and were also given a brochure. Aletta and Ruben walked the grounds and met lots of people. Sheri presented a speech on Saturday the 6th September. During the festival the MC continuously broadcasted that DSFS are special guests. During the music show on the Friday and Saturday evenings DSFS were mentioned again and we got donations for the first 3 rows. Dorothy Russell did an interview on the community radio station of North West on Friday. Dorothy was also interviewed for a broadcast on Fiesta. Solene and Johan, parents of Kara de Lange were also interviewed. Kara took part in the Baby competition
Parents and children attending the Christmas Party Committee members Chairperson: Jacob Matras Vice: Niklaas Arangies Secretary: Dorothy Russell Treasurer: Ansie Steele Office: Aletta Erasmus Additional Members: Rebecca Mosina Magdaline Nkat
An array of colourful soft toys donated by the modelling agency from Virginia to DSFA Future Planning A Down syndrome camp is planned in the Eastern Free State
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Branch News - Gauteng Thanks so much for having me in your group yesterday - it was heartwarming to see the support that these Mum’s get from you - Tabitha Haw
life, computer and employment skills training, to identified youth with Down syndrome and other intellectual disabilities who have completed their schooling education, has proved to be of much benefit to our respective organisations and our family members. Down Syndrome Awareness Day: 20 October 2014 With sincere thanks to our Outreach Co-ordination Manager – Saul Sibanda, Awareness Day events were held and celebrated at all DSA Gauteng outreach support group venues, during the month of October 2014.
Tabitha Haw, MSc (Med) Genetic Councellor - National Health Laboratory Service and University of the Witwatersrand (LHS), Saul Sibanda and a parent
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loser alliance established with government hospitals, clinics and Wits, has enabled DSA Gauteng to reach and assist many more families to access free and / or affordable health care and therapy sessions, for their children with Down syndrome and other intellectual or physical disabilities. Suitable venues, kindly provided at no cost to DSA Gauteng within these institutions, has enabled DSA Gauteng to implement once monthly parent support group meetings in close working alliance with therapists and other medical professionals,
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to the benefit of our children with Down syndrome and other intellectual or physical disabilities, as well as their families. We are happy to report that a further three outreach venues will be established during the early part of 2015. Self Advocacy Programme: Adult Support Services The close working alliance DSA Gauteng formed with EmployAbility-Vulindlela (EV) during the later part of 2012, and who now share our office premises within the CMI building for the purposes of provision of
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2014 Annual Charity Golf Day: Glen Vista Golf Estate – Friday, 24 October 2014 With special thanks and gratitude to all our sponsors and players; Martin and Lisa Koen as well as Heavens Children’s Trust for their invaluable support and sponsorships, Cathal Gilbert and Artur Carrazedo for their very kind sponsorship of a 4-Ball team, as well as Cheryl Carrazedo for so kindly assisting us during the auction, the Golf Day was a success and enjoyed by everyone. We were all delighted when Tony Raposa with Down syndrome, won the prize kindly sponsored by the Fidelity Security Group, to the person with the nearest
guess of ‘number of tees in the bag’ at the 1st Hole they had also sponsored and manned. Tony had everyone in stitches at the 10th Hole, Martin Koen and Heavens Children’s Trust so kindly sponsored, when he kept eating the marshmallow he was supposed to tee-off with, to see who in their 4-Ball team would reach the furthest distance, to win one of the lovely sponsored prizes. Outings/Events DSA Gauteng sincere thanks were extended on a number of occasions to the Johannesburg Theatre, for their very kind sponsorship of free tickets to our family members to watch various stage performances, as well as opportunity to meet with some of the cast members. Sincere thanks were also extended to the PR Department at Constitutional Hill, for their kind sponsorship of a free guided tour, for staff members, learners and self advocates, from both DSA Gauteng and EV. With thanks and gratitude to Dr Gill Lloyd and other identified guest speakers, for so kindly volunteering their time, DSA Gauteng was able to successfully host some Saturday Parent Information mornings during 2014.
We take this opportunity to express our sincere gratitude and acknowledge The National Lottery Distribution Trust Fund; the Carl and Emily Fuchs Foundation; Rob Jackson and all Trustees of the Dad’s Charity Cycle Challenge; Martin and Lisa Koen and all Trustees of the Heavens Children’s Trust; Monica Wolfson for so kindly running in the Jerusalem Marathon as an entrant in the DL Link, to not only create awareness but also funding to DSA Gauteng; Yolandi Ingwersen (Principal of the Enoch Nursery School) and all staff members for so kindly initiating the community ‘Walk for Acceptance’ on Saturday, 12th April at the Choose Life Church, to not only create awareness but also funding to
DSA Gauteng; Terry Eichhoff for so kindly requesting her friends and colleagues, to preferably make a donation to DSA Gauteng instead of purchasing her a birthday gift; Sonya and Rolf Ruegg for their ongoing support and sponsorships; Nicky Rood and Ron Smith and their family members for their ongoing support; as well as all our other Sponsors, Donors and Family Members. Your much appreciated support during 2014 enabled DSA Gauteng to sustain the outreach support services, activities and programmes that are needed and make a difference, in the lives of children, youth and adults with Down syndrome and other intellectual or physical disabilities, as well as their families.
With thanks and gratitude to Dr Gill Lloyd and other identified guest speakers, for so kindly volunteering their time, DSA Gauteng was able to successfully host some Saturday Parent information mornings during 2014
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Branch News - KwaZulu Natal
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014 was a very busy and successful year for DSA KZN. We highlight some of our activities below: Public Awareness This year we visited private hospitals around Durban leaving posters, calendars and literature in the maternity wards.
Our Chairperson, Angie Govindsami, gave Radio interviews twice during the course of the year. This proved to be very successful with several offers of donations and enquiries about Down syndrome. In September we sent a team of 21 young adults to a Sharks ‘‘Buddy Walk’ participants with ‘Sharky’ Our annual ‘Buddy Walk’ is a fun event held on or around the 20th October for National Awareness Day. There were approximately 500 people walking for Down syndrome. Before the start of the walk there were shrieks of delight when ‘Sharkie’ (Sharks rugby`s mascot) made an appearance. A ‘warm up dance’ took place for all the ‘walkers’ to loosen up before the event - then ‘Sharky’ was called upon to cut the ribbon to officially start the race. Our thanks to all the people who helped with the event and to all our sponsors.
‘Actors’ on stage 10 of our girls and boys saw the pantomime Aladdin in December. Not only were they completely mesmerised by the show but arrangements were made for them to meet and interact with some of the characters afterwards. They had posters and programmes autographed. It was a wonderful afternoon.
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rugby game. They got to meet some of the players and have their T-shirts autographed. Our ‘team’ lined up on the field as the players came out of the tunnel. We were also mentioned on Supersport TV. The ‘team’ had an amazing and different afternoon. Our grateful thanks to the Sharks for sponsoring us.
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Fundraising Our special thanks to The Victor Daitz Foundation who funded our Outreach Programme for 12 months. Enabling us to continue with this vital service. In June we hosted a fundraising breakfast, John Smit (CEO of the Sharks rugby, formerly captain of South Africa and the Sharks) was our special guest. John is
an interesting and inspirational speaker, it was an amazing morning with an amazing man. Our thanks to John Smit for giving up his time for us. Funding is becoming more difficult in this economic climate. The years of always relying on the National Lottery for support, are gone. Sadly they have not called for applications from Charities since September 2012. Outreach The Outreach Programme in KZN continues to grow, with the association reaching out to families in rural and urban areas. Contact is made with new families at the Genetic Clinics. We work closely with Dr Naicker, Sr Namitha Chabilal and Sr Marlene Nadesan. 81 new families were registered with our association during 2014. The Association continues to promote the introduction of support groups throughout the province in partnership with the therapy departments at provincial hospitals. In October Barbara Higgins and Dudu Sishe visited Manguzi Hospital in the north of Zululand. Congratulations to the staff members at Manguzi Hospital on the excellent work being done in the area. DSA KZN looks forward to working with them in
the future. A successful Public Awareness Day was held in the uMflozi community, just outside of Empangeni with more than 200 people attending. Another excellent public awareness campaign was held at Albert Luthuli Hospital organised by Sr Namitha Chabilal and the Genetic team. DSSA visited DSA KZN to evaluate the LEV Outreach projects which are run in the province. The group had a meeting with our newly formed ‘fathers group’ at the office, this was attended by 9 fathers. The next day one of our families involved with outreach in the KwaMbonambi area (Zululand), opened up her home for a support group meeting. 15 families plus the local chief were represented from the area.
Potential ‘Michael Jordans’ in action Students from UDW invited a few of our members to participate in an exhibition basketball game. This was something very different and our young members had a ‘ball’. Five of our girls were invited for a makeover. They were thoroughly pampered and all looked, even more beautiful than usual, with their faces made up and fingernails polished. They were each given designer bags and shoes afterwards as a thank you.
The Outreach families supported the Buddy Walk and Year End Party organized by the office Other Functions A Contact Parents Workshop was held in November with Dr Barbara Simpson who is a social worker and lecturer at University Durban Westville. Barbara is also the parent of a son with Down syndrome. We thank Barbara for giving up her time to run the workshop on our behalf.
Pampered ladies! And finally the normal events of the year were also accommodated: AGM, talks at government hospitals to student nurses, Club 21, Street collection, DSSA AGM and staff training, Picnic at Mitchell`s Park and the Year End Party. All in all a busy year.
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Branch News - Nelson Mandela Metropole (PEDSA)
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EDSA has been very busy over the last twelve months, and has worked hard at achieving our goal of greater awareness of Down syndrome within the Port Elizabeth area. We have also had some great fundraisers, wonderful Starfish functions, information afternoons and celebrations. Our first big activity in 2014 was the excellent coverage we received in all the local newspapers for World Down Syndrome Day 2014. The Barris family, with their son Nathan who has Down syndrome, were interviewed and photographed by Die Burger. These articles generated a lot of interest.
also raised much-needed funds. This was followed by the fabulous Denim & Diamonds breakfast held at the beautiful Slipperfields venue that had been donated to us. Amazing food, awesome entertainment and great goodie bags and all our wonderful friends really made for a very special morning. PEDSA is still very lucky to receive good support for our Golf Day, and with many thanks to Dale Mouton and Colin Barris, this event, held to also celebrate National Down Syndrome Day in October, was a great success both financially and in promoting
awareness and understanding of Down syndrome. We have continued to host wonderful, entertaining and educational Starfish functions. We have toured the Volkswagen South Africa factory in their little train with lunch at Something Good Roadhouse afterwards, we learnt line dancing, we did beautiful mosaic pot stands, had a energetic and enjoyable African drum evening and ended the year with a Christmas photoshoot and having Christmas cards printed which were sent as thank you cards to all PEDSA’s loyal and committed supporters through the year.
We held three very successful fundraisers throughout the year and although these assist greatly in keeping our association afloat, it is an ongoing struggle in these difficult economic times to get donations, sponsorships and support, but we are extremely grateful for the continued and loyal support that we do receive. Our cricket day was well supported and was thoroughly enjoyed by all that played. We even had a Lake Farm Centre (a local residential home for adults with intellectual disabilities) team, who had great fun. The afternoon’s activities ended with a prize giving and auction, which
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One of the glitzy Christmas cards Back: Taryn Channon, Viva Maqina, Carla Burke, Matthew Evans, Janet de Klerk, Martin Garisch Front: Nathan Barris and Luca Fabbri
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Carol Massyn playing with and assessing a Excited children and parents at Dora Nginza Hospital with the toys child donated by staff from the local Pathcare laboratory The Paediatric Genetic Clinic at Dora Nginza Hospital, run by Pathcare and the Department of Health and where PEDSA offers assistance in many various ways, continues to flourish and grow providing much needed care, information and assistance as the only facility of its kind in the province. Our two Outreach Co-ordinators, Thandiwe Matomela and Ursula Diedericks continue to offer their support, understanding and knowledge and assist at the Clinic. Thandiwe arranged a very successful Down syndrome information, question-andanswer day in celebration of National Down Syndrome Day in
October, where Carol Massyn, a Geneticist with Down syndrome as her speciality spoke, as well as two Speech Therapists and a couple of moms. PEDSA also provided the refreshments for the afternoon. This proved to be a very successful and enjoyable afternoon. Our busy and eventful year ended with a couple of really wonderful Christmas parties. The first was the Christmas Party for the children with Down syndrome from the Clinic, held this year at a venue within Dora Nginza Hospital. The staff of Pathcare once again donated beautiful gifts and party packs. Hotdogs, cool drinks and ice
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cream were provided by PEDSA. The Starfish Christmas Party, held at Ibhayi Guest Lodge, a venue that is provided to PEDSA free of charge, for all our meetings, AGM and Starfish functions and for which we are extremely grateful, followed this. Our Starfish each brought a gift to swop, were entertained by Maoz the Magician and had great fun building their own burgers! We are all so thankful for the special blessings received over the last year and look forward to continuing in our mission of awareness, understanding and acceptance of and for those with Down syndrome.
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Branch News - Support Cape
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e have been taking the Toy Library to Khayelitsha District Hospital (KDH) once a month just for the families who live in Khayelitsha. The hospital in Khayelitsha is one of the most beautiful stateof-the-art hospitals ever seen. A huge thank you to the Speech Therapy, Occupational Therapy and Physiotherapy Departments who run a combined Toy Library for pre-school children with Down syndrome in the area. Parents have opportunities to play with their children, and every month are shown how to make a toy. Please contact our office if you live in Khayelitsha and would like to attend. Committee Committee members, elected at the Annual General Meeting on 27 September 2014: Chairperson: Meiro Nisha Khan, Vice-Chairperson: Yusuf Davids Secretary: Koelsum Bibi Ghansar, Treasurer: Lynne Rutherfoord, Committee Members: Latiefa Davids, Janap Daniels, Fatima Oliphant, Carmen Titus and Farhaanah Ghansar (SelfAdvocate). Staff Farewell to LizĂŠlle Bruinders, our senior Family Counsellor who left in October 2014. We were so blessed by having her with us for two years and wish her well in her
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future. Our staff team seems set to grow, so watch this space for future developments. We want to encourage all our families to make an appointment before they come. We used to be able to manage drop-in visits, but with the outreach, we cannot always accommodate you if you decide to drop in. Piano Lessons Endinako Nqweniso and his mom, Lumka A piano music teacher relocated Nqweniso. recently to Cape Town and would like to give lessons to a child with Thanks & Acknowledgements Down syndrome. She had taught We thank our donors, the NLDTF, a child with Down syndrome the Red Cross War Memorial and enjoyed the experience so Children’s Hospital, Friends of much that she hopes to repeat the Hospital, the University it with another pupil with Down of Cape Town, Syringa Trust, syndrome. Contact our office for the Department of Social more details. Development, Community Chest, and everyone who gave Outreach areas so generously of their time, Monthly visits are made to and donated in kind, providing Bonteheuwel, Fisantkraal and everything from gifts to food Atlantis to meet with families and fun for our children to have who have a baby with Down a Christmas party every year. To syndrome or other intellectual assist us with the Toy Library or disabilities. other services, please contact our office. Further information Office: Tel: 021 689 1519 or Toy Library: 021 658 5610 Email: downscape@gmail.com Cell: 082 424 6339 Remember!! Fikiswa Majova and her daughter, Onesimo Majova
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Casual Day 4 September
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s Chairperson of DSSC, I, Meiro Nisha Khan wish to thank the Red Cross War Memorial Children’s Hospital, UCT, our donors NLDTF, the Department of Social Development, Syringa Trust, the Community Chest and others, our caregivers and families, and especially to our unique, special babies, children and adults that make you beautiful and special. Without you we will not exist. Thank you to Inyathelo for developing our organisation with your invaluable resources. I always feel so passionate about education, throughout my teaching career spanning over 49 beautiful years. I now feel fulfilled and confident when I do Awareness programmes at schools in changing children’s mind-set about Down syndrome and other intellectual disabilities. Every Tuesday our Moms are educated on how to prepare their precious children for mainstream education and I educate parents on how to improve their children’s visual perception skills, fine and gross motor skills, by using everyday objects. We will soon be starting a workshop on toy making, using scrap, while parents are waiting to be seen by Val, the Family Counsellors and Speech
I am special. God chose my mommy and daddy. They make choices for me. I simply follow.
Farhaanah Ghansar Therapist. etter to a teacher from a child with Down syndrome
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By Meiro Nisha Khan Dearest Teacher I am a child, I am unique,
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I can learn. I want to learn. Please be patient with me. I will try my best… I won’t disappoint you. Please! Don’t disappoint me. I will try my best. I entrust my learning to you. Please! Don’t give up on me. I love you. Will you learn to love me too? You are unique and special too. From your loving Child with Down syndrome
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Branch News - Tshwane / Pretoria
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resentations were given at several events: The AYOLA Youth Lekgotla in Atteridgeville, Department of Science and Technology, Department of Health and Department of Social Development in Soweto. A radio interview was done on the morning cruise show at Radio UNISA. Parent packs were distributed at these events and were handed out at hospitals. WDSD 21 March The focus for the celebration was on Health and Wellness. The event started with an aerobics class. The young adults and their parents had their blood glucose and blood pressure checked. Dental and hearing screening was done and the team from Special Olympics entertained the children with games. Health professionals were available to address health issues. This event was a huge success as attendance was phenomenal. Inclusive Education A workshop took place on 11 and 12 April where 43 teachers from various Pretoria schools participated. Hanlie Swanepoel and Azette Engelbrecht presented the workshop. Their book ‘Embracing Diversity – through multi-level teaching’ was also published. DSSA hosted a workshop on the Education Support Pack. Ancella Ramjas
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attended this workshop. Outreaches We have 2 outreaches, 4 support groups and 2 self-help groups in the greater Pretoria area. A total of 45 new parents joined the support groups, 187 families are included in this group. Monthly visits to provincial hospitals and clinics have provided a platform for awareness on Down syndrome. We have three parttime therapists employed at the outreaches and a music therapist also joined the team. Seven parents attended the Hanen Programme, ‘It takes Two to Talk’, for parents of children with language delays, this was presented by Tracey Gunn. The Masakhane Wheelchair Project has seen 6 children with Cerebral Palsy being the recipients of new buggies. ‘Break the barrier strengthen the Township’ project (SelfHelp groups) The project ran from July 2011 to August 2014. The groups are encouraged to continue support groups within their communities. The self-help groups in Atteridgeville and Soshanguve have been going strong and have made some difference within their respective communities. The groups received educational programmes and training from
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‘Hands on Technology’, which sponsored the children with Duplo blocks. They were also involved in the ‘We can Talk’ programme.
Mothers being spoiled during the Mothers Day morning Mother’s and Father’s day / Parent mornings This was celebrated on 3 May and 7 June respectively; mothers had a morning tea and were spoiled with a spa treatment and beauty products sponsored by Nivea. Father’s day focused on the theme, ‘My dad takes part in the family’, and this was sponsored by DSSA. Daniel Mofokeng gave a talk on the role fathers should play in the lives of their children with special needs. The fathers enjoyed a braai that was specially prepared by their wives. They received a hot stone massage by the Tshwane University of Technology students and Baatile Komane. Parent mornings were held during the year. We had talks on the importance of nutrition, Speech therapy, Early Intervention and Music therapy for children with Down syndrome.
Art classes The Carl and Emily Fuchs Foundation donated money for Art and Creativity classes. Attendance is a challenge. Five classes were given and four children attended each class. National day This was held on 18 October 2014 at Rooihuiskraal terrain. 270 people attended the day. Boerewors, jumping castles, party packs, bread rolls, puppet show, ice cream and face painters
were sponsored by different people. Swimming The swimmers participated in their first gala in September. This event was organised by Special Olympics. Swimming practise is taking place on Saturday mornings Young adults The young adults had several meetings during the year. Ms Annelise Boot facilitates the group.
The young adults had regular Sokkie evenings during the year. A camp was held at Bushveld Game Farm from 2426 October 2014. The following activities were done during the weekend: Bokdrol spit, kaskar racing, targets shooting, soccer and swimming. They went on a game drive and saw impala, giraffes, blesbuck, bush pigs and blue wildebeest. The camp was sponsored by Lotto.
Families enjoying the puppet show Remember!! Casual Day 4 September
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Branch News - Western Cape
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014 was a year of streamlining and finetuning for Down Syndrome Association Western Cape. We’ve had very little changes on an employee and Management Committee level, and for that we are grateful. In the office: Liza Rossouw, a fundraiser and marketer joined our team in July bringing with her a new fresh breeze and enthusiasm. On the MC: Ingrid de Jager, our treasurer and vice-chair, resigned from the MC. Dion Govender was appointed as Vice Chairperson and Chris van der Westhuizen as treasurer. We also had to say goodbye to Dr Willem du Toit, one of our MC members. We thank both Ingrid and Willem for their contribution to DSAWC. We also gained the accounting expertise of Karin Morris who was co-opted onto the MC. DSAWC got its Facebook up and running, had a look at the Website and just dabbed our toes into the Social Media pond. The Organisation is in a good space at the moment. After 38 years of existance we have now grown up. We have come full circle. DSAWC knows who we are - who we work for and what we stand for.
We have expanded and we are now serving 380 families in seven Outreaches covering 32 areas. Our relationship with hospitals and the local communities allow us to really reach the people that need our intervention. The different outreaches all had their own functions throughout the year, creating awareness in their areas and raising funds for specific needs. One highlight of the year was our Christmas party that was sponsored by Durbanville Lions Club and the whole event was one big party! Golf Day We had another successful golf day and we are very thankful for all the teams, donors and friends who helped us with this event. We only managed to get half of the teams but we made close to R 25 000.00 and we are grateful for their support.
Umthi Special Care Unit The Umthi Special Class has really exceeded our expectations! Reny and her team are doing fantastic work. The class is still run in collaboration with Sivuyile Children’s Home and the Department of Health at the Stikland Hospital. Umthi’s educators and learners are also enjoying the assistance of the CSPID Team. The progress of the 16 learners in the past twelve months shows us all that everybody can be educated, and that we all thrive on belonging and fitting into the system somewhere. Our Umthi children touch lives everyday. A family member of one of the children won a national prize from Tracker and he donated R 10 000.00 towards Umthi for special events. Leisure Libaries The Art class takes place every 3rd Saturday of the month. The young adults enjoy this social day where they can express their creativeness through painting and be part of the creation of shopping bags, peg bags and aprons. We also made wine gift bags that sold out much sooner than we expected. Thank you to Beulah, Marianne, Fiona, Hillette and Marilyn for being part of this successful project. We really appreciate you.
Outreach Tineke Boshoff and Amelia Colyn manning Esther Adams is (still) our the administration table at the annual golf Outreach Co-ordinator. The The other highlight is our day Outreach is our biggest program. monthly Sokkie. The young
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adults diarise this event and this is a social evening where they can dance while they enjoy the company of their friends. It is a very festive exciting atmosphere and with the help of the DJ Jacques, they create wonderful memories. Early Intervention Marochelle Botha is running our Early Intervention Project. We now have seven little ones who attend the sessions on a one-onone basis. Thanks to Marochelle for the outstanding work she does in assisting our children to develop to their full potential. Parent Connection Evening Once a term we host a parent connection evening. The idea behind it is inter-connectedness between parents, meet other parents and interested parties over a cup of coffee and listen to an expert talking on his / her subject for ten to fifteen minutes. We invite speakers to address relevant topics as per the requests from our parents. Awareness On 20 October with the help of University students, our young adults with Down syndrome and staff raised R 1 995.00 in 60 minutes on Bill Bezuidenhout Avenue, opposite our offices, and created awareness! We handed out balloons and collected donations.
Informational Talk and Performance to Medical Students We did a presentation to the University of Stellenbosch nd year medical students 2 at Tygerberg hospital. This changed the opinions of some of the young students who will be our doctors of tomorrow. They got a little bit of insight into what Down syndrome really is. Jody Adams a young man with Down syndrome, accompanied Tineke and performed two songs, showing the students how capable a person with Down syndrome can be. Cycle Tour Our annual cycling tour all the way from Bellville to Mosselbay was a huge success. We are really honoured that the Mountainview Cycling club from Goodwood Correctional Services has been doing this annually for fourteen years. This tour is a wonderful time to create awareness and raise funds at the same time. We stop at all the small towns and schools on the journey and share the success stories of our wonderful programmes.
Thank You Evening Once a year we invite all our donors, friends, doctors and people who contribute to the work we do to show our appreciation. We had a wonderful event where we showed everyone what we do daily in the lives of people with Down syndrome and other intellectual disabilities. Without people with caring hearts we will not be able to reach those who need our intervention. Once again we thank everyone who walks the walk with us. It might be an anonymous monthly donation like Mr Whoever, or a pensioner who pledges R50 monthly, or you might dedicate your time or skills and effort, or you invited us to display our handmade products at your church bazaar, whatever you contribute, it makes a visible difference and we sincerely appreciate it.
L.T.R : Harold Wentzel, Lynette Malan, Sarel Strydom, Patrick Darlow, Lukas Kruger, Kevin Boshoff, Udesh Rampersad, Amanda Henn, Jody Adams. Lying in front: Gert van Wyk
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DSSA Outreach Groups
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enes day is a National event which is celebrated annually by all branches and outreach groups to celebrate people who have Down syndrome and other intellectual disabilities. The Kimberley outreach group celebrated National Down Syndrome day at the Molehe Mampe Secure Care Centre on the 20th October 2014. Over 40 people including parents, children, teachers and care workers from the centre attended the event. The children faces were painted by one of the teachers. After lunch was served we gave the kids their party packs and they were so excited to find the hidden present inside. It was a day to remember. We wish to extend our gratitude to DSSA who contributed to the
Kimberley success of the day by providing us with funds to buy food and refreshments for everyone who attended. Also a big thank you to the principal and teachers of Jannie Brink School for transporting our children, not forgetting Mr Hofsta and staff for providing us with the venue. Christmas Party We celebrated our Christmas party at the Waterlillies crèche and aftercare centre on the The 22nd November 2014. party started with a prayer and the co-ordinator welcomed everyone present including Mrs Wilna Gates and Mr Jabulane Dikgale who graced us with their presence from DSSA. We were expecting more children but because of the weather only a few people attended. Mrs Gates
Luvuyo Zenani using Wilna’s arm as a writing pad before the Christmas party started
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handed out the shoeboxes to the children and photos were taken, the children were excited and soon they were opening their presents. A big thank you to Operation Shoebox for always putting a smile on our little one’s faces, we are really grateful, not forgetting the principal of the crèche, Patricia for letting us use the crèche for the Christmas party. We would also like to thank Mrs Gates for organising the party and the Kimberley congregation of the Netherdutch Reformed Church for sponsoring the food and refreshments, thank you. In Memory We would like to offer our condolences to the Mere family on the passing of their mother, Lucia Mere. May her dear soul rest in peace.
Children with their shoeboxes from Operation Shoebox and parents
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Tzaneen and Polokwane
Children and parents on their way to celebrate Genes Day 2014
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reetings to all who read our article.
We as Down Syndrome Limpopo are working very hard to make sure that people with Down syndrome and other intellectual disabilities are well supported and live a better life in our community. We keep on making sure that no one will undermine them. As in the past we continue to make home visits in different communities and at the clinics. We hope people who have Down syndrome and other intellectual disabilities will live life to the fullest. Our special message to our lovely family members of young and old who have Down syndrome and other intellectual disabilities is that we are one big family and it is our duty to make sure that our community accept them and treat them in a good way.
We want to call on people who know of or who has a family member with Down syndrome or any other intellectual disability in our community to join our meetings every month in Polokwane at Reakgona Centre and Tzaneen at N´wamitwa Village. We are looking forward welcoming everyone from our province to be one big family with us. We invite everyone to come and celebrate World Down Syndrome Day on the 21st March 2015 with us at N´wamitwa Village as well as National Down Syndrome Day (Genes Day) on the 20th October 2015. Feel free to contact Motseo Difference on 078 246 0888 at anytime for assistance. Mrs Angelic Wanter, Speech therapist at Letaba Hospital is available for speech therapy.
newspaper interviewed Precious Mosiane and Mrs Moilamashi. Lunch was served to the children and parents and they were entertained with music. Everyone enjoyed the day. The year-end function was held at Mrs Medupi’s residence on 13 October 2014. Officials from Tlokwe municipality ensured that all children and parents attending received food, gifts and transport. The day was dedicated to fun and entertainment; members were excited to see the joy on the faces of the beautiful children. The event was a success and parents felt more confident that if they come together they can and will raise more awareness in their communities. We would like to thank Down Syndrome South Africa and the Tlokwe Municipality for the support that made the event successful.
Potchefstroom
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he Potchefstroom Outreach Group hosted the National Down Syndrome Day celebrations at Tshwaragang Disability Centre on 24 October 2014. The programme manager of the North West Disability Forum addressed the parents about taking care of their children. AgangFM and the local
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Special ‘Genes Cake’ to celebrate National Down Syndrome Day
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DSSA Support Group Witbank
Children with Down syndrome and other intellectual disabilites getting together to celebrate National Down Syndrome Awareness Day with Musa Mashiane from IDOLS
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he Witbank Outreach Group are a legal entity as their application for nonprofit organisation status was successful. A meeting was held by the members at the beginning of March to plan for World Down Syndrome Day and a decision was taken to raise awareness by hosting a soccer tournament. Awareness On 13 March 2014 Lerato Mokoena and Pastor Mabhena were invited to talk about Down syndrome on Emalahleni FM radio station. The Ikwekwezi FM also interviewed Lerato about the awareness day and she used the opportunity to invite the community to come and enjoy the day with the group.
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World Down Syndrome Day was celebrated at Schoongezicht, four church soccer teams competed. The children were also given an opportunity to play during halftime to show case the capabilities of the children with Down syndrome. The event was a success and well attended. The community and businesses like Chicken Licken and NSB Solutions supported the group to host the event. Support Group Status At the DSSA Annual General Meeting in July 2014 a decision was taken by the DSSA board members to elevate the group to Support Group status as they registered as an NPO in May 2014. This is a good
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development as the group can engage in resource mobilisation initiatives to sustain the group and increase their support to other families in Mpumalanga. National Down Syndrome Awareness Day National Down Syndrome Day was celebrated by hosting a braai for families and friends at Extension 7 Kwa-Guqa Park. Musa Mashiane from IDOLS joined the group and sang for the children. Operation Shoebox The gifts from Operation Shoebox were given to the children at a function held at Witbank General Hospital.
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Contact Details DSSA OFFICE
National Executive Director Ancella Ramjas (dssa.ned@icon.co.za) National Organisational Development Officer Wilna Gates (dssa.odo@icon.co.za) National Project Manager Jabulane Dikgale (dssa.pm@icon.co.za) National Officer Administrator Gloria Monare (dssaoffice@icon.co.za) 0861 369 672 / 011 615 2990
DSSA OFFICE BEARERS
Chairperson: Thabang Chiloane Vice Chairperson: Dumisile Khuzwayo Treasurer: Klazina Hattingh Secretary: Sonia Skein Add. Members: Lynne Rutherfoord and Zimkita Metele
DSSA OUTREACH GROUP CONTACT DETAILS Limpopo: Tzaneen Difference Motseo (motsiri.motseo@gmail.com) Contact number: 078 246 0888
Polokwane
Kaiki Vivavose (kaikapakai@gmail.com) Contact number: 071 741 3423
Mpumalanga Witbank
Lerato Mokoena Contact number: 083 732 6189 Nhlanhla Malinga (nhlanhlam@sassa.gov.za) Contact number: 072 586 5261
Northern Cape Kimberley
Brenda Kock (bkock.bk@gmail.com) Contact number: 072 604 6722
North West Potchefstroom
Precious Mosiane Contact number: 082 695 6372
BRANCH CONTACT DETAILS Amathole (East London):
Denise Taylor (dsaael@telkomsa.net) Contact number: 043 722 4918 / 083 552 4616
Gauteng:
Marlene Boucher (marlene.dsag@megaweb.co.za) Contact number: 011 615 4180 / 011 484 6116 Karen Torlage (karen.dsag@vodamail.co.za) Contact number: 011 640 6637 Saul Sibanda (saul.dsag@vodamail.co.za) Contact number: 076 916 9814
Kwa Zulu Natal:
Caroline Willis (downskzn@iafrica.com) Contact number: 031 464 2055
Support Cape (Red Cross Children’s Hospital): Val Hoy (downscape@gmail.com) Contact number: 021 689 1519
Free State:
Dorothy Russell (russeldc@ufs.ac.za) Contact number: 051 405 3292 / 083 375 5058
Western Cape (Belville):
Tineke Boshoff (info@downwc.co.za) Contact number: 021 919 8533
Nelson Mandela Metrople (Port Elizabeth): Lindy Opperman (info@pedsa.co.za) Contact number: 083 629 9906
Tshwane:
Zelna Barends (zelna@downs.org.za) Rinske Pouwels (rinske@downs.org.za) Contact number: 012 664 8871/8928
DSSA SELF ADVOCATES
Chairperson: Thenjiwe Ndebele Contact number: 083 395 3560 / 073 166 2923 Vice Chairperson: Kagiso Nwandula Contact number: 084 326 1226