Sibaleni Nathi- Volume 9 2013

Sibaleni Nathi Count Us In

Volume 9- 2013

Dssa Contact Details:

Tel: (011) 616 1458 OR 0861 369 672 Email: dssa.office@icon.co.za Website: www.downsyndrome.org.za

In this edition.....

World Down Syndrome Congress Report Shona & Andrius Wedding Toilet Training Aging & Alzheimer’s Disease Branch News

DSSA Training Sessions Down Syndrome South Africa is now offering a variety of training sessions aimed at empowering Parents and Family members of children with Down syndrome and other intellectual disabilities/learning difficulties and to others working in the field of Special Needs.

New Parent Support and Basic Counseling Skills For people who wish to become new parent support counselors – many parents of babies or children who have just been diagnosed with Down syndrome or similar disability will go through various stages of grief. This training will give you the skills in supporting the new parents and their family in understanding the condition as well as coping skills.

Basic Support and Early Intervention Strategies for People with Down syndrome. Intellectual Disabilities, Developmental and Cognitive Delays.

This programme has especially been designed for the new parents and other people who come into contact with young children with special needs. The appropriate training covers topics that will ensure all participants will leave feeling empowered, confident and with a better understanding of babies and children with special needs. The training will consist of: What is Down syndrome, other intellectual disabilities, developmental and cognitive delays and the medical issues associated with them * Basic support and what to expect * The importance of Early Intervention, Development and communication * Social and Motor development * Practical intervention strategies * Where to from here * and much more!

Inclusive Education: How to include children with Down syndrome and other intellectual disabilities in the classroom For schools, educators and parents of children with Down syndrome and other intellectual disabilities. Today more children with special needs are accessing inclusive settings such as playgroups, nursery schools and their local mainstream schools. However many of these settings are not completely inclusive - this is mostly due to the schools or parents not knowing enough about Inclusive Education. Let us show you how to successfully include your child or children with special needs into the classroom.

The Right to Know – Friendships, relationships and safety in the community For Parents and others working in the field who wish to assist young people with Down syndrome and other intellectual disabilities to understand and know their rights in terms of friendships, relationships and personal safety. This training will cover topics such as friendships, relationships, sexuality and safety in the community.

The dates and venue of training will vary. Costs for members from R300/day.

Please keep a check out on our website for dates of the various training sessions www.downsyndrome.org.za or contact the office 0861 369 672

2

Sibaleni Nathi- Volume 9

In this edition....

Contents 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: POSTAL ADDRESS: PO BOX 1563 Bedfordview 2008 Tel: (011) 616 1458 Tel: 0861 369 672 (DOWNSA) Fax: 011 252 5323 Email: dssaoffice@icon.co.za Website: www.downsyndrome.org.za

National News

DSSA Training 2 News from the editor

5 News from the National Director 6 News from the National Project Manager 8 Awareness 10 Athletes with Down syndrome 11

6

International News

22

Down Syndrome International World Down Syndrome Congress World Down Syndrome Day Inclusion International Inclusion Africa

12 13 14 15 16

Regular Features

Inspirational 18 MiniMag- Count us in 20 Parents Perspective 21 Early Years 22 Education 23 Adulthood 24

24

Branch News

26

Amathole Gauteng

Kwa-Zulu Natal Support Cape Tshwane Western Cape Free Sate Nelson Mandela Metropole DSSA Outreach Groups Branch contact details

Sibaleni Nathi- Volume 9

3

26 28 30 32 34 36 38 39 40 44

Thank You to all our generous Sponsors Down Syndrome South Africa would like to take this opportunity to thank and acknowledge the following companies and individuals for their support during the year. Without this support we would not be able to provide the services that are so desperately needed.

• • • • • • • •

National Lottery Distribution Trust Fund Dannhauser Inc Chartered Accountants Tradepage (for hosting our website) KARE Staff Members LEV/DH Denmark Shaun and Bianca Reinecke and wedding guests Aston Manor Primary Komatsu

We also receive anonymous donations and thank those who continue to support us on a monthly basis by donating directly into our bank account.

DSSA is partially supported and funded by the National Lottery Distribution Trust Fund

4

Sibaleni Nathi- Volume 9

Editorial

Message from the the Editor

W

from the desk of the National Organisational Development Officer

ow 2012 has been a nerve racking, exciting and joyful year for me at Down Syndrome South Africa (DSSA).

The main highlight of the year was DSSA hosting the 11th World Down Syndrome Congress at the Cape Town Convention Centre in August 2012. We are proud and happy to say that after all the hard work the congress was a HUGE success and we thank every single person who contributed to the success of this congress. Turn to page 13 for an in depth report from Vanessa dos Santos, the congress chair. We wish India all the best for hosting the congress in 2015- we know its going to be spectacular!

DSSA, our branches, support groups and outreach groups were busy during National Down Syndrome Day and World Down Syndrome Day. These two days are so important to all of us, we raise much needed funds and most importantly we raise awareness around the condition of Down syndrome. Although our main

aim is to create awareness all year through and not just around these two days.

I always feel so fulfilled and still very passionate when I do awareness talks at schools and companies. I love breaking the perceptions people have about Down syndrome and intellectual delays this can only be done through educating people! Our branches, support groups and outreach groups continue to do just that!

Their hard work does not go unnoticed. We often find ourselves in unfair situations when dealing with inclusion and incorporating people with Down syndrome and intellectual delays into society, but we must continue the fight and never give up! Please turn towards the back of the magazine for all our branch news as well as contact details should you want to contact a branch in your area.

Syndrome Awareness month. We will also be hosting our Annual Ladies breakfast later on in the year, which is always well attended.

This gives you plenty of time to diarise these dates and spread the word to friends and family. Please contact the office for me details pertaining to fundraisers.

As always I feel very blessed to do the work I do, as a result I continue to grow positively as a person.

Thank you to everyone who I am privileged to work with, my colleagues at DSSA, our branches, support groups, outreach groups, beneficiaries and funders, we cant evolve as a national organisation without your input and support.

Due to the fact that we hosted the congress in 2012, we never had a golf day. Now that the congress is behind us we are pleased to host our golf day on the 03 October 2013, which is National Down

Sibaleni Nathi- Volume 9

5

National News

National Directors News

from the desk of the National Director

T

We now have 14 branches/support groups or outreach groups throughout South Africa. We are also aiming to open a new support group in Nelspruit later this year. DSSA is governed by a strong board of volunteers which is made up from representatives from our branches and support groups, also represented on this board are two people with intellectual delays.

The board of directors guide us in all that we do.

his is now our 11th issue of Sibaleni Nathi “Count us in”, a publication of DSSA. The purpose of our annual magazine is to provide our members with an overview of our activities at DSSA as well as to provide information and news from the previous year.

Since the official establishment of an office in 2003 and employing more staff over the years DSSA has grown from strength to strength.

Our latest addition to our Staff is Gloria Monare who is our administrator and bookkeeper. I wish her many years of happiness with us.

In addition to DSSA growing so to have our branches and support groups.

6

This past year has been very busy with our main focus on the 11th World Down Syndrome Congress (read more about the congress on page 13). However, there is only so much we can fit into each issue.

One way of staying abreast of what is happening in our world is to check out our website: www.downsyndrome.org.za (if you are a frequent visitor please regularly “refresh” our website for updates). We too are on Facebook where you can also “Like” our page: Down Syndrome South Africa.

Sibaleni Nathi- Volume 9

By doing so you will receive regular updates on what is going on in our organisation and the world of Down syndrome.

We often get phone calls from parents regarding their child’s schooling, (especially at the beginning of each year) asking questions with regards to school placements and should they send their child to a regular school? Although we at DSSA promote inclusion in all aspects of life we provide the families with as much information regarding inclusion in regular schools, the choice is ultimately theirs to make. Some still prefer to send their child to a special school for whatever reason. However those that do send their child to a regular school do need support from our organisation. Placing a child in a regular school setting without the necessary information for both the school and the family can lead to “inclusion” not being properly implemented and this could lead to all sorts of problems.

We want to avoid this and have specialists available to assist parents and the schools. With thanks to the National Lottery.

National News

Distribution Trust Fund (NLDTF) we were able to assist families and schools in the past. With this years funding we are in the process of developing and printing an ‘Inclusive Education’ pack which will be able to be used by educators and parents and hope to have them available from May 2013. These packs will be used in conjunction with training to those who wish to do so.

We too have developed other training material and will be conducting training in the near future on the following: • New Parent Support and Basic Counseling Skills; • Basic Support and Early Intervention Strategies for people with Special Needs; • Inclusive Education; • Self Advocacy – For young adults with intellectual disabilities; • Right to Know – series on Friendships, Sexuality, Safety and Protection; • Promoting and Protecting the Rights of People with Intellectual Disabilities and their Families; Read more about Inclusive Education on page 23.

Keep a lookout on our website and Facebook for all training dates and details relating to venue, date, costs etc.

Fundraising is an important component of keeping the organisation going, as without the funds we would not be able to continue the work we do. We are fortunate to receive funding from two international organisations. The Danish organisation LEV has been one of our major contributors over the past 9 years now. Read more about the current project on page 8 and 9. We furthermore continue to be supported by staff members of KARE in Ireland who contribute a percentage of their monthly salary to us. Thank you to all our funders for your support which is gratefully appreciated by all.

Working to improve the lives of people with Down syndrome and other intellectual disabilities is just one of the areas of our daily work.

As an organisation we often give input into various policies and documents as well as meet with various government departments to ensure that our members needs are included and met.

which gave us first hand knowledge of the status of people living in the townships and what their experiences were. This study clearly shows that the UNCRPD has not made an impact on the lives of people with Down syndrome and other intellectual disabilities and their families, because of this study I was able to give a presentation to the Parliamentary working group regarding the status of the CRPD and people with Intellectual disabilities. I urge members to familiarize themselves with the convention and know what their rights are. DSSA has this document available on our website: www.downsyndrome.org.za The Easy to Read version for people with Intellectual disabilities is also available.

South Africa is one of the many countries that has signed and ratified the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). As part of the LEV “Break the Barrier – Strengthen the Township” project we conducted a “Baseline Study”

Sibaleni Nathi- Volume 9

7

National News

National Project Manager News

from the desk of the National Project Manager

O

ver the last year the outreach groups have grown from strength to strength with more parents realising the benefits of participating in the groups. One goal of the outreaches has been to increase community awareness in order to promote positive attitudes and expectations about people with Down syndrome. They provide an arena for the exchange of information about community services and resources, in addition to providing social and emotional supports as parents work through their initial adjustments. They have shown increased commitment in assisting grassroots efforts to improve the lives of people with Down syndrome and their families. The efforts of the outreach groups are

8

informed by the belief that the entire community benefits when people within it are empowered.

Though there are challenges in most communities where the outreach groups operate, the coordinators have shown the motivation and willingness to assist and keep their groups together. They are in the forefront of making sure that parents and children are not excluded from the service delivery processes. In some areas they assisted with access to schooling and day care centres which discriminated against people with intellectual disabilities.

On the 28 November 2012 an outreach group was formed in Mafikeng, North West Province. A committee made up of parents was established and Advocate Nontsikelelo Sojane was given the task of leading the group.

DSSA/LEV – Break the BarrierStrengthening the Township Project – 2011 – 2013 Self-Help Groups The concept of self-help groups has gained momentum in the last

Sibaleni Nathi- Volume 9

two years in the DSSA branches and outreach groups. Issues of participation, ownership and mutual support are gaining increasing emphasis. The strategy of promoting Self Help Groups for parents of people with intellectual disability in branches and outreach groups has proved to be ideal to encourage self help and advocacy in the townships.

The SHG’s act as a focal point for advocacy on disability rights and experience sharing among the members. They are viewed as a means to achieve the newly emerging goals of inclusion and to enhance participation in the development process by people with intellectual disabilities and their families.

Most self help groups have stabilised in their functioning and internal factors like good leadership, unity and mutual understanding among members is determining the pace of growth and development. The most powerful attributes is that the SHG’s have been very effective in improving the levels of awareness of members rights and the ability to transform their lives. Social interaction has

National News

improved among the members after joining the groups. The success of the groups has been mainly to the sincere services of the group coordinators.

There were challenges in organizing some SHG’s into cohesive groups as members exhibited many forms of social discomforts. Some people in the groups did not bond easily and lacked self confidence. The initial time taken for group formation in this context could be quite long.

Another problem was the fear that a powerful few in the group would dominate others. Groups would also need considerable training and capacity building before they could function effectively and democratically. In such situations, the coordinators helped to facilitate cohesive and democratic group formation. The lack of motivation in the SHG’s to undertake their own development programmes was another barrier; most groups seem to depend on coordinators for each and every decision. This cannot be considered as a positive thing, the strategy of gradual and slow withdrawal of the helping hand of the coordinators, seems to be the ideal mechanism for making the groups self reliant.

Key Project accomplishments in 2012 The Desk study of South African legislation and policies related to people with learning disabilities was finalised.

The Baseline study was conducted in selected townships identified for the project and the method of gathering information was focus groups and individual interviews.

The Board of Directors field visits are monitoring and evaluation processes which afford the B.O.D to interact with local duty bearers, community leaders, educators, health professionals and parents of people with intellectual disabilities.

The field visits were conducted in Potchefstroom, Port Elizabeth, Bloemfontein and Kimberly. The board members who participated in the B.O.D were Reggie Steenberg, Tineke Boshoff, Vanessa Dos Santos and Klazina Hatting.

The Mid-Term Review was conducted in two branches in Gauteng. The parents of people with intellectual disability were interviewed in Orange Farm and Attridgeville. The review was aimed at providing a preliminary overview of the work of DSSA in terms of implementing the LEV Township project.

Self Advocacy Training took place in Port Elizabeth and eighteen young adults from the Port Elizabeth and East London branches were trained over two days.

The training was facilitated by Vanessa Dos Santos and Tineke Boshoff. This was a pilot project which forms part of the development of the advocacy strategy. Most of the young adults remarked that they enjoyed the training and felt very empowered.

We intend to host a Self Advocacy Workshop for all the branches and outreach groups in May 2013.

To receive documentation and assistance on how to set up a Self Help Group, please contact John on dssa.pm@icon.co.za or call 011 484 8890/1

Sibaleni Nathi- Volume 9

9

National News

Awareness National Down Syndrome Awareness Day- 20th October “Genes” day 2012

Down Syndrome South Africa (DSSA) proudly announces our awareness campaign: ITS ALL IN THE “GENES”. With Down syndrome being a genetic condition we aim to create awareness around the condition of Down syndrome and promote the abilities of people with this condition.

We ask schools/companies and the general public to support us on this day by wearing Jeans and purchasing a “Genes” day sticker from us.

Genes day 2012 was a huge success. We wrote articles in the Caxton community newspapers in Johannesburg, we received a great response with many people contacting us for stickers and awareness materials. Vanessa and Roxy were on various radio stations. We had a huge amount of calls from people where we referred them to the local branches in their area.

Vanessa was interviewed on Great Expectations and Against All Odds both airing on E-TV. Additionally crew from E-TV came to the Pretoria Zoo on the 20 October with our Wibank Outreach group who

10

were visiting the zoo on an outing to celebrate Genes Day. Roxy did awareness talks at the office of the Mayor in Tshwane as well as at Komatsu, which is a global earth moving company.

Staff at their head office and their branches throughout South Africa, purchased stickers and T-shirts.

Thank you to Komatsu for their involvement in this event!

A big thank you to Shaun and Bianca Reinecke and their wedding guests, who instead of buying gifts for the couple donated money to Down Syndrome South Africa.

Thank you to all our branches, support groups and outreach groups who were all involved with activities to celebrate Genes day in their areas!

Fundraising

Due to the World Down Syndrome Congress taking up the majority of our time, we never had a golf day in 2012. DSSA will be hosting a Golf Day in 2013, the scheduled date is Thursday 03 October please contact the office for more Information.

Sibaleni Nathi- Volume 9

For the first time we sold 2013 branded Down Syndrome South Africa Diaries, thank you to everyone who supported us! Please keep this in mind for your 2014 diary.

National News

Athletes with H

ereunder the basic procedure getting involved with sport for athletes with Down syndrome. Although this is “swimming” specific, this applies to Athletics and Gymnastics as well. Inclusion into local clubs works very well.

• Enrol with a swimming school in your area for basic stroke correction.

• Once a swimmer becomes competent in the strokes ask that he/ she joins training “squad” at your swim school. At squad training fitness levels are worked on.

• In order to participate in competitions the swimmer needs to be registered with a club.

• The swimmer also needs to be registered at a provincial level with a sports association for the intellectually impaired - the National body is SASA-II (South African Sports Association for Intellectually Impaired). To find out the contact person in your area please contact: Ina Fowler (national swimming convenor) email: ifowler@mweb.co.za mobile: 083-4415677 (Please note that SASA-II participate in other sporting codes such as athletics, basketball, cricket, soccer, table tennis, & netball)

Down syndrome • If the swimmer is at a mainstream school or has left school you would need to open a club in your area and affiliate to the provincial association which is affiliated to SASA-II in order to be eligible to participate in competitions run by SASA-II. It is important to understand that an athlete has to participate at a local level in order to be selected at a provincial and then national level.

SASA-II is the only recognized sporting body in South Africa for the Intellectually Impaired. SASAII is a member of SASCOC (South African Sport Confederation and Olympic Committee) SASA-II Contacts for Athletics & Swimming: Theuns Luus (National Sports Convenor) tluus@megaitsolutions.co.za Cell: 082 890 8194 OR Albert Warnick warnam@gmail.com Cell: 083 242 5196 For further details on international calendar: Website: www.dsiso.org

In May 2012 Sports Union Down Syndrome (SU-DS) was formed.

The mission statement for this organization will promote sport worldwide for athletes with Down syndrome to the highest levels of sporting excellence. The sports included at this stage will be athletics (www.IAADS.org), swimming(www.dsiso.org) football and gymnastics (www.dsigo. org). See website for further details: www.su-ds.org Competitive opportunities do exist within the programmes of Special Olympics and also INASFID which is the International Organisation through which all people with learning disability can access the Paralympics Programme. However, a number of years ago it was realised that athletes with Down syndrome were being outclassed in competition by other people with learning disabilities who did not have the same physical disabilities that are often associated with Down syndrome. For this reason a sporting association for people with Down syndrome has been formed thus providing them an opportunity to compete at a world class level.

Sibaleni Nathi- Volume 9

11

International News

Down Syndrome International News

D

own Syndrome South Africa is a member of Down Syndrome International (DSI).

DSI is made up of Down syndrome organisations globally as well as individuals such as people with Down syndrome, parents, family members, professionals, researches, practitioners and carers.

DSi’s mission is to improve quality of life for people with Down syndrome worldwide and promote their inherent right to be accepted and included as valued and equal members of their communities.

Our very own Mrs Vanessa dos Santos is the current President of DSi (2012 – 2015). Vanessa has been a member of DSi since 2002.

She is a parent of an 18-year-old boy who has Down syndrome and cerebral palsy. Since her appointment as President, Vanessa now represents DSi on the International Disability Alliance, which is the only disability organisation that has direct links to the United Nations. Vanessa gave a presentation at the UN Headquarters on World Down Syndrome Day (WDSD) 21st March 2013. The conference focussed on “Right to Work”- Article 27 of the United Nations

12

Convention on the Rights of Persons with Disabilities (UN CPRD) which recognises the right of persons with disabilities to work, on an equal basis with others; this includes the right to the opportunity to gain a living by work freely chosen or accepted in a labour market and work environment that is open, inclusive and accessible to persons with disabilities.

The conference helped to realise the right of persons with Down syndrome and other disabilities to work in open, inclusive and accessible environments. It also highlighted the importance of early development and education, proper medical care, support for employment, independent living and community participation in realising this right.

Apart from WDSD, DSi also coordinates and arranges the World Down Syndrome Congress (WDSC) which are hosted every three years in different parts of the world. These congresses provide a great opportunity for participants to gain experience on the latest developments and up to date knowledge and tools to improve the lives of people with Down syndrome and their families.

Sibaleni Nathi- Volume 9

This also gives the opportunity of networking, learning and sharing experiences from across the globe as well as making new friends and meeting up with old ones.

The next WDSC will take place in Chennai, India from 18th – 22nd August 2015. Check out the website for updates: www.wdsc2015.com

World Down Syndrome Day Awards Down Syndrome International (DSi) announces awards in voluntary, professional and scientific categories to coincide with World Down Syndrome Day each year.

Any member, member organisation, DSi Board member, or Awards Committee member can nominate an individual, group or organisation whose voluntary or professional activities have strengthened and enriched the lives of people with Down syndrome.

International News

WDSC Report World Down Syndrome Congress

Cape Town Convention Centre

14-18 August 2012

D

own Syndrome South Africa (DSSA) won the bid to host the 11th WDSC 2012 back in 2008.

DSSA together with the Local Organising Committee and Down Syndrome International (DSi) worked to ensure a programme that would benefit everyone who attended. The theme for the congress was “The Big Five” which focused on Rights, Health, Education, Employment and Social Participation. From those themes we had subthemes.

The congress was held over five days and broken into a one-day Pre-congress, three-day Main congress and one-day Post congress event. Two events were held on the first day (pre-congress), the Down Syndrome Medical Interest Group (DSMIG) and the INDABA, which was a workshop for young adults with Down syndrome, 90 delegates from all over the world participated in the event. We had some rather anxious parents waiting outside wanting desperately

to come inside. Resolutions from the delegates were handed to the Deputy Director General of the Department of Women, Children and People with Disabilities who hosted the day as well as the VIP cocktail party after the event of which all delegates from the INDABA were invited to attend.

The DSMIG consisted of people working in the medical field of Down syndrome internationally and some 50 delegates attended.

The Medical Professionals were very impressed with the opening message made by a young lady with Down syndrome from Singapore Ms Jaspreet Sekhon whose message was “My Appeal to Health Care Professionals”.

The deputy Minister of Health Dr Gwen Malegwale Ramokgopa opened the Health session and the deputy Minister of Education Hon. Enver Surty opened the Education session. The city of Cape Town hosted the Welcome cocktail party on the first evening and Executive Alderman Mayor Patricia de Lille welcomed all the

delegates to Cape Town. Premier of the Western Cape Helen Zille closed the congress and the Resolutions of the Main congress were handed to her. The banner and baton were handed over by our National Executive Director and Chairperson of the congress Vanessa dos Santos to Dr Ramachandra from India who will be hosting the next congress in 2015 in Chennai, India. Vanessa was also introduced as the new President of Down Syndrome International (2012 – 2015).

The Gala dinner was an amazing experience and certainly enjoyed by all. I don’t think there was one person with Down syndrome who didn’t boogy it up!

A big thank you to the Local Organising Committee, a special mention: Marie Schoeman (Programme Director), Judy McKenzie and Thabisile Levin. Also thank you to Director of Down Syndrome International, Andrew Boys.

Please log onto DSSA website to view the papers presented.

Sibaleni Nathi- Volume 9

13

International News

WDSD 2013 World Down Syndrome Day

21 March “Be Different... to Make a Difference”

T

he 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.

WDSD was first observed in 2006 in many countries around the world. This day has seen a huge increase in events and participation.

Our greatest achievement to date was the recognition of the day by the United Nations.

On 19 December 2011, the United Nations General Assembly declared 21 March as World Down Syndrome Day. The General Assembly decided to “designate 21 March as World Down Syndrome

14

Day, to be observed every year beginning in 2012;” and “invites all Member States, relevant organizations of the United Nations system and other international organizations, as well as civil society, including non-governmental organizations and the private sector, to observe World Down Syndrome Day in an appropriate manner, in order to raise public awareness of Down syndrome”.

On Saturday 16 March Down Syndrome South Africa hosted a family fun day in celebration of World Down Syndrome Day, at the Birchwood Hotel in Boksburg, Johannesburg. We had members from our Gauteng, Pretoria and DSSA members enjoyed a fun filled family day! Special Olympics entertained the children and adults with sporting activities, we thank Annemarie and her team!

In South Africa we celebrated the theme “BE DIFFERENT TO MAKE A DIFFERENCE” across all provinces of the country. We wanted people talking about World Down Syndrome Day, we achieved this by asking people to dress differently: people wore different shoes, their T-shirts back to front, brightly colored wigs, cap back to front etc. All of this contributed to spreading the word and creating awareness around the condition of Down syndrome. We also sold “WDSD BE DIFFERENT TO MAKE A DIFFERENCE” button badges for R21 as people with Down syndrome have a triplicated 21st chromosome.

We also had a range of other activities including coloring in station, hair spray station and nail polishing for the ladies. The children enjoyed jumping castles and a refreshing swim! A big thank you to all members who attended, it was a great opportunity for parents to interact with each other, and for branch members to meet each other.

Sibaleni Nathi- Volume 9

International News

Inclusion International

I

nclusion International and the Arc celebrated a successful National Convention and Global Forum. October 25 – 28, 2012, more than 900 people from over 35 countries gathered in Washington DC to take part in Inclusion International and the Arc of the United States National Convention and Global Forum, Achieving Inclusion Across the Globe.

More than 160 self-advocates from all regions of the world came together to share their experiences in building and promoting self-advocacy. Inclusion International’s Self Advocacy Committee members delivered an outstanding presentation on the UN Convention on the Rights of Persons with Disabilities and helped facilitate the day.

The conference included the launch of Inclusion International’s Global Report on Living and Being Included in the Community, Inclusive Communities = Stronger Communities.

Conference sessions brought families, self-advocates, professionals and allies together to explore a variety of exciting topics including: employment, housing, selfadvocacy, supporting individuals

and families to lead inclusive lives, lifelong learning – early childhood education through to inclusive post-secondary, decision making, and many more.

The World Health Organization hosted a consultation with selfadvocates on WHO’s upcoming statement on involuntary sterilization. The session participants helped ensure that WHO’s global position is informed directly by people with intellectual disabilities.

From these forums, and with information collected through surveys, focus groups and the regional coordinators, we have learned about key issues which are common across regions and specific issues that relate to the cultural, political and economic context of the regions.

Read about “Living and Being Included in the Community Regional Perspectives on Choice, Support and Inclusion for Africa” on the next page.

Inclusion International’s Global Report on Living and Being Included in the Community, Inclusive Communities = Stronger Communities As part of the Global Campaign on Article 19 of the UN Convention on the Rights of Persons with Disabilities (CRPD), Inclusion International conducted regional forums with their member organisations in each of the five regions. These forums were an opportunity for family organisations and self-advocates to share their perspectives on the right to live independently and be included in the community and explore the particular challenges and context for achieving this right in their region.

Inclusion International is looking forward to our next global gathering in 2014 for our World Congress in Nairobi, Kenya. Hope to see you there!

Sibaleni Nathi- Volume 9

15

International News

Inclusion Africa S

tretching from Lesotho, Swaziland and Namibia in the South to Ghana, Burkino Faso, and Benin in the west to Kenya, Tanzania and Ethiopia in the East, Africa is the world’s secondlargest and second-most-populous continent and also the least economically developed of the regions in Inclusion International.

More than 850 million people live in the 48 countries of sub-Saharan Africa. Over 15 million people of these are believed to have intellectual disabilities and majority live in abject poverty, neglect and social isolation. Many more are victims of catastrophic human rights violations; the most marginalized underclass in the remotest, most isolated places in Africa, with hardly any safety nets; always at the bottom of the pile, even within the disability movement.

The few national actions plans that target people with disabilities do not routinely recognize those with intellectual disabilities in education, health and poverty reduction.

Despite the continents vast size and number of cultures many similarities exist across the countries; for example, in aspects of cultural beliefs and practices, state investment in welfare – or to be

16

precise, the lack of it – and the strength of civil society. Almost all the countries of Africa share numerous features in common in relation to people with intellectual disabilities.

KEY ISSUES Cultural and societal attitudes Societal prejudices and beliefs contribute to many issues faced by people with intellectual disabilities, making it harder for them to access education, become aware of their rights, reach those in power and access appropriate facilities and services.

Weakened Communities Extended families are becoming less the source of support to people with intellectual disabilities.

This is more so taking into account the fact that particularly in urban areas, the communal way of life

Sibaleni Nathi- Volume 9

is fast breaking down. The worst affected are those with multiple and severe disabilities who cannot leave their homes and who despite living with their family, in the community, are not included in the community in any meaningful way. The main worry for their parents is how their children would survive when the parents die.

Access to an/or availability of employment Opportunities for income generating activities are limited to non-existent for both adults with intellectual disabilities and their family members. Extreme poverty results in further marginalization in the community. People with intellectual disabilities and their families are among the poorest of the poor.

Lack of governmental support The pressure on public health services is enormous, and many people must travel long distances to reach the services they need. None of our participants, had experience of readily available community led services and institutions are often the only way to access vital services at an affordable cost. Many African governments have enormous strains on their health services, with a fast-growing population and low formal employment keeping tax remittances low.

Access to education Children and young people with intellectual disabilities invariably get less education than that of their peers and lack of education is identified as an obstacle to inclusion in the community as the main concern of most of the participants in the focus groups discussions. In a few countries, special schools exist which admit children with special needs rarely supported by welfare services and often with inadequate or no specialized services in the form of therapists, and educators. They, however, promote segregation, and the children enrolled in these schools cannot escape from social stigma. As a result, the vast majority of young people with

Intellectual disabilities are excluded from either age-group and community, and face problems later in life obtaining employment.

Inclusion Africa hosted the 4th Inclusion Africa Conference and General Meetings on the 08-10 April 2013 in Ghana. The theme was “Strengthening Our voices, Building our Movement� the meeting was hosted by Inclusion Ghana.

Congratulations to John Dikgale, National Project Manager of DSSA who was elected vice chairperson for Inclusion Africa at the 4th Inclusion Africa Conference and General Meetings in Ghana.

Should you require any information or updates of Inclusion Africa during the year please contact John: dssa.pm@icon.co.za

Sibaleni Nathi- Volume 9

17

Inspirational

Shona & Andrius Wedding

Two adults with Down syndrome tie the knot

by Sue Stafford

T

he weddings I have been to have all been special but one of them stands out as being “great”. Great for many reasons including that I knew the journey and passion that brought the bride and groom together. Their desire to be a married couple matured as their relationship waxed and waned and then stabilised into a commitment to a shared life. Being part of that journey made their wedding all the more extraordinary.

It was great to share with family and friends at the ceremony other reflections and “stand out memories” of Shona and Andrius, and to listen as they related their stories of their many adventures and

18

life experiences in Australia and overseas.

I asked two of their friends, Matthew Wiggins and Ty Belnap, both of whom have Down Syndrome, for their thoughts about the day and especially what they thought about the wedding and marriage.

Matthew said “Look I have known both of them since we were ‘this high’ and they are my best friends; it’s great”! Does this wedding encourage you to consider marriage? “Yes, I hope so”, he said.

The ceremony where Shona and Andrius shared their commitments took place in a venue with a 360-degree [all round] view of the ocean. It was a special place

Sibaleni Nathi- Volume 9

for a special occasion. During the ceremony a number of whales passed by, one fairly close in waving its flipper as it did so. During the reception Ty shared with me his belief that the whale for him was the spirit of his recently deceased mother letting him know that she was there with them all at the ceremony. Again, a special moment shared and a memory to treasure.

Inspirational

A very dapper Andrius was the first of the wedding party to arrive, escorted by his groomsmen (father, brother and brother-inlaw-to-be ), marching very upright into the room and down the red carpet. Sometime later the bridal party was effectively announced

by Shona’s niece and flower girl, Leonora, sprinkling red rose petals ahead of the three bridesmaids, (Shona’s sister, her friend from school in Jakarta and her cousin).

Dressed in red strapless gowns with laced bodices and diamanté trim, the bridesmaids nicely complemented the groomsmen’s dark suits and red rose lapels.

Then the bride arrived on her proud father Derek’s arm. Shona had a gown with a fitted bodice, gently flowing skirt, and a veil that sparkled as the light struck it. As the celebrant led the vows we were all smiles when Andrius was asked would he take Shona to be his wife, Shona beat him to the response with ….” Please say yes!!”

Throughout the ceremony a slide show rolled on with photos of Shona and Andrius with family and friends over a period of many years, many of whom were present on the day. Guests had come

the many international and local guests who had been so important in influencing the lives of Shona and Andrius.

Following the formalities Shona and Andrius led off the dancing with a ‘rap’ waltz. The company, magnificent food and fun made for a wonderful time and a great party.

from far and wide – USA, Papua New Guinea, Singapore, Jakarta, Bali, Rwanda, South Australia and far north Queensland, and throughout New South Wales. The slide show really worked in bringing us together as one family of relatives and friends.

Weddings should have meaning and should include the guests in a celebration of the spirit of life that joins us in the bonds of family and friends. This wedding most certainly had it all. It was a great celebration – and a great start to a new life for a great special young couple.

Reception formalities included great speeches from Ty’s dad Mike Belnap, who reminded us of the strength and support which the bridal couple had enjoyed from their siblings throughout their lives, and the role played by their parents in guiding them to such a significant milestone in their lives.

Penny Robertson welcomed all to the reception and thanked the

Sibaleni Nathi- Volume 9

19

Story From ASelf Advocate

Mini Mag M

Count us in our voice

y name is Michael, I am 21 years old and was born on Friday the 13th with Down syndrome, and my mom says since my birth it is now her lucky day! I have one sister Simone, she is 22 and studies at the Pretoria University as a Fashion Buyer.

I was born with a heart defect and went for open heart surgery when I was 5 years old. I attended a private pre-primary school (which included swimming) up to grade R, after which I went to Merryvale which is a school for children with learning disabilities.

When I finished school, we moved to a small holding just outside town. I got my own quad bike and went everywhere on it. I also had a horse named Frisco, a Jersey cow called Nunu, and 4 dogs and 2 cats.

I love my playstation, and have a PS3. I also have lots and lots of CD’s. Kurt Darren is my favorite, and I know all his songs. I have met him at KKNK. I went alone with Simone, we camped in a tent and saw all the plays and shows, it was a lot of fun. My mom likes it that I am independent and can

20

by Michael Steffens who has Down syndrome go away with my sister. She has games, clothes at Markham’s and taught me from a young age to I am saving now for a laptop. I go alone to shops, draw my own enjoy my work because it gives money at the ATM and pay for me independence and I have my things with my debit card. She own money, lots of friends, meet says I am just like everyone else a lot of new people and learn new and just take a little bit longer skills. learning new things, but once I get it, I never ever forget it!

We also have a very special group of Friends called Starfish. We In 2010, I got a job at Garden meet once a month and do a lot Court Hotel and I started working of fun things together. We have there in June, during the Soccer uncle George and auntie Wilna, World Cup. I met a lot of famous they really do so much for us and players! My first job was in the have taught us lot of new skills. I kitchen where I helped to keep all have met up with lots of my old the prep areas clean and also used school friends from Merryvale a very big dishwasher to wash and I even have a very sexy red everything, millions and millions headed girlfriend whose name is of plates, glasses and more! I Maryke. We have gone to movies, made a lot of friends at my work the Boardwalk and to eat out a lot. and they taught me Xhosa. Later I I have also bought her nice gifts. was promoted to the Housekeeping department as a Houseman. A Houseman does a lot of running around in the Hotel and assists with everything. I take irons up to guests and when the rooms are empty, I change shower curtains, deep clean kettles in the rooms, take laundry up and down and help sort all the laundry for washing. I work every day but have a break over weekends. I have my own bank account and have saved a lot of money. I like to buy new

Sibaleni Nathi- Volume 9

Parents Perspective

Our Story......

I

was so excited about the birth of my second child. I was surprised to find myself as excited as I’d been about the birth of my son. I wondered if we would have a boy or a girl this time. It didn’t really matter to me, as the saying goes, ‘as long as it’s healthy’. After all, ‘I’d been there, done that’, and expected everything to be quite ‘normal’.

And then Robyn was born. Our little girl was diagnosed at birth as probably having Down Syndrome, Trisomy 21. Tests confirmed this some days later. At 6 weeks old we found out that she had a heart defect too. Initially it was expected to be one operation and a straight forward repair. This too was not to be.

Robyn had her first operation, a PA Banding at 3 months old. She had open heart surgery at 10 months old and another at 3 years. 6 months after that she had a sternum repair and a lung drained.

These operations were not without complications. Weeks in ICU, septicemia, resuscitation, collapsed lung, repeated ventilations, many other infections, fat draining into her lungs; these things and more kept us on our knees.

I marvelled at how her doctors

never gave up on her, I marvelled at her fighting spirit, and we were totally humbled by the support of people around us – family, friends, acquaintances, colleagues, the professional people involved in Robyn’s life, even strangers. We literally lived one day at a time during these difficult stages. But that too passed.

Life went on, as normally as possible. We still had regular doctor’s visits with Robyn, as I think is typical of young children with DS. She’s struggled particularly with chest infections. Physiotherapy, occupational therapy and speech therapy are all a part of our lives now. I found the home programme which we started at 6 weeks of age to be totally invaluable to us. We received not only guidance for Robyn’s development, but also so much wise counsel, which I believe has helped to keep our family balanced and happy. Eventually the time came when we had to address formal schooling beyond the playgroup in our area which she attended.

We tried a mainstream private school but found the special needs school to be more suitable for Robyn. It focuses on developing her reading and writing skills, basic maths and life skills. She

by Tracy Bryon is very happy there and loves to be surrounded by her friends. She is so keen to learn and try new things and it always is and has been very rewarding to see her progress and develop new skills.

She has an amazing sense of humour and has the ability to make us laugh daily. Amongst other things, she enjoys singing, swimming and role playing. She’s keen to help me with household chores.

She adores her brother and there is nothing about her character that I would want to change. She is affectionate and a ‘people’s person’, doesn’t have a shy bone in her body and just loves life.

Robyn is now 10 years old and we’re at a stage where the future seems more uncertain. Her heart is under strain and her lungs aren’t great. She needs further surgery but we’ve been told it’s risky. We endeavour to never take her or each other for granted.

Sibaleni Nathi- Volume 9

21

Early Years

Toilet Training With nappies and pull-ups the way they are, many children (typically developing or with DS) simply do not feel that they have wet themselves, so a useful technique is to put the child in pants under their nappies. This avoids the embarrassment of the child wetting/soiling themselves in front of everybody, yet also helps him/her tell if they have wet themselves. So have a large supply of cheap pants at hand.

A

toilet training plan can only be implemented if everyone (at school and at home) is on board and agrees to act in a consistent manner, so the teaching staff and the child’s family need to meet and agree on a plan before trying to start on it.

In our experience rewards for toileting work for children with Down syndrome if the children know why they are getting the reward, i.e. for staying dry. All too often, the children are taken to the toilet and rewarded for going to the toilet there and then, when it is getting them to recognise that they are wet/soiled in the first instance, and then to hold on, which is the objective.

22

Take the child to the ordinary boys’/girls’ toilet at regular intervals (every half hour or so to begin with, then extend – and these should be included in their visual timetable) and once in the toilet check together if he/she is dry or not. Use the Makaton/STC sign for “Are you dry?” and give him/her a reward they will like if he/she is. If he/she isn’t, then point out kindly, “Look, you are wet.” Make no fuss, just change him/her, but give him/ her no reward. Go through the same process at each regular interval. Through perseverance and consistency, the child should begin to realise if they are wet or dry and why they are being rewarded.

If the child soils him/herself during class, then calmly take him/her out to the disabled toilet to

Sibaleni Nathi- Volume 9

change him/her. It is essential, though, that the child gets to use the regular boys’/girls’ toilet as much as possible. To avoid the embarrassment of having a TA going with him/her to the toilet at the same time as all the children are sent to the toilet (before playtime/lunch, for example) then go with him/her to the toilet before the others, but make sure that he/she goes along to the toilet to wash their hands at the same time as everybody else.

Each child is different, so what will work for one may not work for another, but consistency and perseverance are key. Unless there is an additional difficulty or medical condition, there is no reason why a child with Down syndrome cannot be toilet trained and the child will get there in the end!

Education

Inclusion Why Inclusive Education?

by Vanessa dos Santos National Director Down Syndrome South Africa

I

n the past it has been normal practice in South Africa for children with Down syndrome and other intellectual disabilities to be placed in segregated settings such as special schools. However there has been a strong move from parents who want their child to be educated and included into mainstream schools for many reasons.

Today more and more children with special needs are attending the local preschool, nursery school or playgroup. These environments form the foundation on which to build on. The main aim at preschool level is social inclusion, which allows children with special needs to develop and mix alongside their peers in the local area.

This also gives opportunities for friendships to develop and continue though the school years.

Due to the learning difficulties associated with Down syndrome and other intellectual disabilities the majority may be at a lower level of development than that of typically (non disabled) developing children of the same age.

Learning the rules of appropriate social and routine behavior are all part of the days activities in these environments. Children with Down syndrome respond positively to routine and structure.

There has been much research published about the capabilities of children with Down syndrome in the mainstream schools. Some research furthermore shows that children will: • Learn more effectively when working in inclusive settings; • Develop more age appropriate behavior; • Have the opportunity of having more age appropriate friendships; • Become part of and contribute to the community;

Typically developing peers and their families also gain from this experience. They will have a better understanding about disability and show more care and support.

Inclusion is not an easy task to achieve. A holistic and positive approach is needed. One of the most important components of inclusion is the buy-in from all concerned. A positive attitude is key to its success and parents, educators and the school principle all have to work together.

For more information regarding Inclusive Education Packs and training dates contact the office on dssaoffice@icon.co.za or www.downsyndrome.org.za

Sibaleni Nathi- Volume 9

23

Adulthood

Aging & Alzheimer’s Disease

Certain extracts of this article were taken from the Down Syndrome & Alzheimer’s Disease booklet which is a publication of the DSA UK and may start showing signs of ageing as early as 30-40 years of age. Studies have shown that degenerative changes in physical appearance such as in skin (wrinkles) and hair (grey), they also show the neuropathologic features of Alzheimer’s disease earlier than the general population.

E

ighty years ago people with Down syndrome rarely got to celebrate their 10th birthday.

Just twenty five years ago their life expectancy increased to around 25 years. However with advanced medical care and better living conditions, people with Down syndrome, like the rest of the population are living longer. Not only are they living longer, they too are living happier, healthier and fuller lives. Today people with Down syndrome can live well into their 50, 60’s and some even into their 70’s.

Premature ageing in people with Down syndrome

Premature ageing is a characteristic of adults with Down syndrome

24

Health

While in the general population the leading cause of death are heart disease (heart attacks, vascular disease (strokes), and the cancers of later life (breast, gut, lung, prostate etc). There is no convincing evidence that people with Down syndrome have an increased or earlier risk of developing such illnesses. Some, such as heart and vascular disease, may even be decreased, possibly because fewer people with Down syndrome smoke or because their blood pressure tends to be normal. The only illness known to be associated with a decreased life expectancy and which clearly does appear to occur earlier in life in people with Down syndrome is a form of dementia called

Sibaleni Nathi- Volume 9

Alzheimer’s disease.

Alzheimer’s disease and Dementia

Character features of Dementia Progressive loss of abilities over time including: •Memory: most characteristically memory for recent events •Higher mental functioning: deterioration in the ability to plan and think and to undertake specific complex tasks such as dressing oneself (referred to as dyspraxia) •Language: increasing inability to understand or use language appropriately (referred to as dysphasia) •Living skills: loss of ability to undertake previously acquired tasks of day to day functioning such as caring for oneself, making a drink, cooking etc •Changes in personality: changing moods, irritability, stubbornness etc.

Alzheimer’s disease is the form of dementia that characteristically has a progressive course and, if brain tissue is examined after

Adulthood

death, it is found to have abnormal numbers of microscopic plaques and tangles and the brain size has shrunk considerably. It is this ‘atrophy’ of the brain tissue that leads to the loss of skills.

It is now clear that the risk that a person with Down syndrome may develop the symptoms of dementia associated with the development of the brain of these ‘Alzheimer’ plaques and tangles increases with age from the age of about thirty. By their fifties approximately half of the people with Down syndrome will be showing evidence of memory loss and other problems (such as loss of skills) associated with having Alzheimer’s disease. The risk that a person with Down syndrome will develop Alzheimer’s disease increases with age at a similar rate as it does in the general populations but 30 to 40 years sooner than is the case for people without Down syndrome.

Alzheimer’s disease is a progressive brain disorder that results in the loss of normal brain structure and function progressively over time. For this reason the symptoms of Alzheimer’s disease change as the illness progresses.

When should you suspect the possibility of Alzheimer’s disease?

Alzheimer’s disease, as with all the dementia, affects a person’s ability to think and reason, to remember things and to undertake the tasks necessary for everyday life. It can be difficult to detect its onset and early course; in people with Down syndrome it may affect their personality first before the more classical early features of memory loss become obviously apparent.

Obtaining a diagnosis It is the person with Down syndrome, his/her family and/or carers that will invariably be the people who first observe such changes. This should trigger an assessment, initially by the GP and, if necessary, through a referral to a local specialist.

Other problems that also should be considered when Alzheimer’s disease is suspected: •Depression •Under-active thyroid grand (hyperthyroidism) •Sensory impairments (visual and hearing loss) •Dementia

•Impact of major life events such as bereavement •Other rare illnesses

Treatment of Alzheimer’s disease As yet there are not treatments that reverse or significantly aren’t the plaque and tangle formation and the brain atrophy that cause the symptoms of Alzheimer’s disease. Treatment is therefore aimed at slowing down the progression of the brain deterioration, minimizing the impact of the increasing impairments, and maximizing the quality of life of the person during the course of his/her illness.

For further information contact dssaoffice@icon.co.za

Tsitsana Mokoena a 45 year old adult with Down syndrome from our Potchefstrrom outreach group attending the World Down Syndrome Congress August 2012

Sibaleni Nathi- Volume 9

25

Branch News

Amathole T

he Down syndrome Association Amathole had an exciting and wonderfully fulfilling year. This would not have been possible without the wonderful committee we have. Special thanks to Denise Taylor for her commitment and dedication and the many hours she gives towards DSAA that is beyond her duty.

Thank you to Charlene Keir for always supporting us wherever she can.

Premises

We would also like to thank Pat Martin for her ongoing support to us for the use of the office space at 2 Dunn Street, Arcadia, which she has been donating to our association for a number of years.

Outreach and Parent Support Groups

Outreach coordinator Nomakwezi Gocina (cell: 084 915 6647), runs the toy library at Frere Hospital every Wednesday morning and visits clinics and families where needed. With Nomakwezi’s experience and training she is really a big asset to our association. Keep up the good work Nomakwezi.

She assists parents in the following areas: • Home visits

26

• Early intervention • Correct eating plan • How to access Grants Mavis Buya is very dedicated in running a support group from her home twice a month. They do craft work as well as offer support to one another. The crafts have been selling well. To Mavis and her team, well done!

{

Please don’t ignore us or look the other way when we approach you. Doing that to us will not make our disability go away.

We didn’t have a choice about our disability, but you definitely have a choice in how you accept us!- Anonymous

Fundraising

Kim’s Antiques – The little coffee shop that has been started

by Linda Davis at Kim’s Antiques when they hold auctions is doing very well. Her mom Thelma Raath, close friend, Paddy Heidtman as well as committee members offer their time willingly. King Pie donates a steady supply of doughnuts each time.

Exercise/Dance classes

}

We started the year with our annual Street Collection which was held in March.

During July we held our annual Golf Day at the East London Golf Club.

In October, Awareness Month, we once again held our Awareness Tea which was a great success with the help from some very special people who assisted in making sure our event was once again so successful.

Sibaleni Nathi- Volume 9

Our monthly exercise/dance classes are held at Old Selbornian Sports Club. The children look forward to it and attendance is growing. Thank you to the dance groups for the ongoing support.

Education

What a big thorn in our side. It has been an ongoing battle to get our children into schools with long waiting lists and even longer excuses.

World Down Syndrome Day Our main event was a scrapbooking day hosted by Paper Dolls Malinda Pritcher. We used this opportunity to offer a presentation on Down syndrome thus creating further awareness. During the week we campaigned with businesses to support us by purchasing ribbons.

Branch News

Amathole Future Plans

Down Syndrome Amathole has a very busy schedule for 2013 which includes, awareness, fundraising, workshops, crafts and family support. We as a committee, parents and volunteers are looking forward to the challenges and opportunities of the New Year.

A few of the Amathole Branch members who were fortunate enough to attend the Congress Down syndrome literature was also distributed to the participating companies. Our community newspaper assisted by publishing an article on Down syndrome.

World Down Syndrome Congress

We were very fortunate to have five parents and five children attend the conference. For both parents and children it was an experience never to be forgotten with so much to see and so much to learn. Well done to Vanessa and her team that made us so proud to be South Africans. A big thank you to the Department of Communications and DSSA for the sponsorships received for some of our members to attend.

Self Advocacy Training

Marinus Brink and Travers Ball attended a workshop in Port Elizabeth on Self Advocacy. They learnt a lot, made new friends with everyone from the Starfish Group and enjoyed every minute of it. We hope to build up our Self Advocacy Group during 2013.

Christmas Party

We were truly blessed with all the donations for our Christmas Party!

Hamilton Club provided the venue and the children were treated to Chinese food from Shanghai Restaurant and cake from Sue Taylor and Nicks Spar. Everyone danced to great music played by Pieter who even got some of the children to sing karaoke. We cannot forget Father Christmas who gave out presents.

Thanking you all

May I take this opportunity to thank all the businesses, media, schools, parents, family and friends for your ongoing support towards Down syndrome Amathole. Last but not least, to DSSA for always being there and helping our branch Amathole grow from strength to strength.

Contact details: Denise Taylor Telephone: 043 722 4918 (office hours Mon-Thur 0830-1300) Cell: 083 522 4616 Email: dsaael@telkomsa.net Fax: 0866 518 824 Sonia Skein (Chairperson) Cell: 072 784 0398

Sibaleni Nathi- Volume 9

27

Branch News

Gauteng D.S.A.G. Office We faced dire financial challenges this past year, due to insufficient approved funding received from the NLDTF. We remain hopeful that ALL funding requested for our 2013 financial year will be approved and look forward to a New Year, with hope and determination, that we will accomplish all our goals to make a difference in the lives of our children and young adults with Down syndrome and other intellectual disabilities, as well as their families, who we serve proudly.

D.S.A.G. Outreach D.S.A.G. focuses the majority of its work in the rural and township areas where we have established Outreach facilities and support groups. Our database of family members continues to grow extensively on a monthly basis. In February 2012 we opened a new outreach facility in the Sebokeng area, which already comprises of 28 families who have children with Down syndrome and other disabilities.

Further necessary measures were also implemented in all other outreach areas of operation. All DSAG

28

outreach support clinics are now being conducted in alliance with hospitals and clinics, to ensure that these children are being fully supported to access medical and therapy interventions.

The lack of suitable educational facilities for children residing in the Kliptown, Orange Farm and Sebokeng areas was also addressed and brought to the attention of the Department of Education.

The group through its activities and support has managed to increase the interest of its members in a wide range of issues. A group of young people in Ekurhuleni are now displaying interest in vocational training and education and some have shown more interest in sports.

We held meetings with Special Olympics management, who are willing to partner with us to provide sports programmes available to them.

D.S.A.G. Self Advocates:

Challenges

The Self Advocacy group since implementation two years ago has provided a very important social network for its members.

It has provided opportunities for people to meet and make friends.

Many members ‘felt at home’ in the group and felt empowered to talk about their personal challenges and other issues, which were important to them. This became an important way of building up solidarity between the members to support each other, and to take more control over their own lives.

The recruitment drive for more young people to be part of the group has seen young ladies from other areas of Greater Johannesburg and Ekurhuleni joining the group.

The nature of self-advocacy in terms of developing self confidence and personal skills is an ongoing process and needs time. It requires time for members to take control of the group and organise their own

Sibaleni Nathi- Volume 9

Branch News

Gauteng sessions and other activities.

There is strong evidence to suggest that the self advocates are vulnerable to negative attitudes and harassment. They still face greater levels of discrimination in services such as health, social services, education, housing and employment.

World Down Syndrome Day Steering Committee and Staff Members joined our national offices of Down Syndrome South Africa on the 19th March 2012, at a World Down Syndrome Day awareness and media breakfast held at Emperors Palace. The morning was a great success and thanks are extended to Roxy and Vanessa for their hard work, in making this happen.

On Friday 23rd March 2012, Marlene participated as a guest speaker at a disability awareness event hosted by the therapists who work in the Therapy Department at the C.M Academic Johannesburg Hospital. D.S.A.G. Outreach Coordinators included brief WDSD awareness presentations, at all outreach support clinics conducted during March 2012.

Fund raising & Donations We extend our sincere gratitude and thanks to all the organisations, individuals and our family members, who have so kindly supported us with donations and sponsorships in 2012.

Special thanks and appreciation is extended to Rob Jackson, Chairman of the Dad’s Charity Challenge and all the Father’s, Mother’s and Friends who participated in the 8th DAD’S CHARITY CYCLE CHALLENGE, which raised

DSAG Contact details CMI Building Second Floor Corner Joubert Ext & Empire Road Braamfontein, JHB.

an impressive R 400,000, of which, R 50,000 was so kindly donated to D.S.A.G. in December 2012. This year’s (2012) Dad’s Charity Cycle saw a 35-strong group of dad’s, moms and friends take on the 668km ride down to Durban to raise funds for charity. Returning after a spirited but tough five-day ride, the group were nursing sore legs and tired muscles but the total of R400 000 raised for charity more than made up for it.

Tel: 011 615 4180 (Home office) 011 484 6116 (Tue 0900- 1300) Email: marlene.dsag@megaweb.co.za Marlene Boucher: Branch Director

Sibaleni Nathi- Volume 9

29

Branch News

Kwa-Zulu Natal Hylton Heggie from KZN also deserves a mention. Hylton holds 1 South African Long Course record and 3 South African Short Course records. Way to go Hylton. Hylton was also part of the SA swim team that went to Italy.

Jennifer Higgins World Champion Swimmer

D

SA KZN congratulate our 2 World Champions. Jennifer Higgins who competed at the 6th World & International Down Syndrome Swimming Championships in November 2012, she retains her world number 1 spot after winning 4 gold medals and breaking 3 world records & 2 SA records. Jenna we are so proud of you.

Charles Phillips competed in the 1st Down Syndrome Gymnastics World Championships in September 2012. Charles came first in the artistic male level four category which is the highest level. Well done Charles, you’re the man.

30

Throughout the year we hold our annual Street Collection, Club 21, presentations to Student nurses at RK Khan and Addington Hospitals and Young Adults Dances (here we must thank Tom and Gina Phillips for all their hard work). Our annual Pietermaritzburg get together was also arranged, where a lovely day was had by all. Thank you to Myles and Morag van Deventer for opening up their home for this event.

Dorothy Russell visited us in February 2012 to follow up on some of our children that she had worked with during 2011. She also presented a workshop for therapists and parents. This workshop was very well attended as one might expect. Dorothy has so much to give in the world of Occupational Therapy, you can learn so much from her it is always such a pleasure to have her in Durban.

Public Awareness

Our ‘Buddy Walks’ which are held in October have always been such

Sibaleni Nathi- Volume 9

fun and very successful, we are always being asked when we are having the next one. Unfortunately there is so much ‘red tape’ involved, that we have had to put the Buddy Walk on hold until we can get the necessary permits and permission. The board of DSA KZN are still determine to host this successful event.

On March 21st we had a picnic at Mitchell`s Park for our families, such a lovely venue with lots of shady trees (this time of the year is very hot and humid in KZN) and a small animal zoo and play park. An added bonus was when Barney, Mickey Mouse and friends arrived.

The children had a lovely day with their friends and lots of onlookers came for a chat too.

October saw our plans for a fun sports day fall flat. All the schools had been told that they had to put bus excursions on hold, due to the fact that their was a really nasty road accident involving school

Branch News

Kwa-Zulu Natal children. So we cancelled the day which, as it turns out, was not a bad idea as we had 2 days of rain.

All was not lost several of our parents took the Awareness Day theme on board and sold stickers and held ‘genes’ day events helping us to raise some much needed funds.

World Congress

Vanessa, Roxy and team really pulled this one off with flying colors. We were lucky enough to be able to send several board members and staff to the Congress. We tried to cover as much as possible and bring back the information to our members. It was a first time experience for most of us and we found it very uplifting and positive. Many of us are working towards attending the Congress in India. We held a report back meeting for our members but this was, unfortunately, very poorly attended. We do hope that everyone was taking the opportunity to follow the event on the internet.

Year End Function

Our year end party was a lovely affair with many of our Outreach parents attending as well as parents from our LEV Project.

To show their appreciation to both Dudu and Barbara they bought presents for them handed out by Santa Claus himself. There were presents and food galore. Our thanks to Dee and Sue Khuzwayo for organising the food and Angie, Caroline, Clive and Neill for organising the event and making the venue look beautiful. Special thanks to the SOUL GROUP from Chatsworth for all their hard work and participation. Thanks also to Santa’s helpers the snow elf Ginelle and Christmas fairy Ling.

Outreach

Dudu Sishe attended Genetic clinics regularly during the year, making contact with newly diagnosed babies. Support Groups in the Ethekwini region continue to flourish.

The LEV Project in the Ugu District is doing well. Every second month G J Crookes runs a clinic for children with Down syndrome where

they have access to physiotherapy, speech & occupational therapy.

Two support groups have been formed within this district. Barbara & Dudu have had meetings with families and community leaders in Umzumbe & Mgaye areas. As a result of this project, an extra class has been opened at a local special school and one of the family members is going to be trained as a class assistant.

The majority of families attending the Christmas party were from the Outreach group. Well done to Dudu for motivating the families to attend functions.

Contact details: Caroline Willis Telephone: 031 464 2055 Cell: 083 366 5355 Email: downskzn@iafrica.com Dudu (Outreach coordinator) Cell: 073 123 0373

Sibaleni Nathi- Volume 9

31

Branch News

Support Cape The start of it all

Down Syndrome Support (Cape) was formed like most support groups, by parents who wanted to help other parents who were told that their baby has Down syndrome; and to have access to information and early childhood intervention, to help children with Down syndrome in their development. The organisation started in 2001 and a few months later, in January 2002, we were settled into the office of the Child Care Information Centre, at the Red Cross Children’s Hospital.

World Down Syndrome Congress

Self Help Groups

The Congress took place in August 2012, at the Cape Town International Convention Centre, and we in Cape Town are fortunate to have been situated in the right city at the right time. The organisers of the Congress must

32

be congratulated for a very well organised international Congress that did us all proud – proudly South African. So, a big thank you to the hard work of the organising committee for making the Congress such a success that it was. We are also grateful for the funding received through our own members and from DSSA that helped our members to attend the main Congress and some also attended the post congress workshops. It was really good to see one of our past parents, now living in Gauteng, who made the trip especially for the Congress.

She echoed the sentiments of many delegates there when she said that she found that the Congress involved a lot of hard work in listening and absorbing all the lectures, and that it had been costly to leave her family, home and work commitments for the week, and that at the end of it all, she was very pleased that she had been able to attend the Congress.

The SHG’s are continuing in Atlantis, Fisantekraal and Bonteheuwel.

We visit the groups once a month, and welcome anyone living in these areas to come and meet us at the local Multipurpose Centre, or as in Atlantis, in the Wesfleur Library Hall. It is a morning meeting

Sibaleni Nathi- Volume 9

and all parents of disabled children, not only Down syndrome, are welcome to contact the office to find out dates for future meetings.

Toy Library News

Every Tuesday morning during school terms, our families arrive at the Toy Library at the Red Cross Children’s Hospital.

We have seen more than 130 children over the past year, and every year we see a slight increase in numbers.

Volunteers (Farhaanah Ghansar, Coleen Clayton, Charmaine Waites and Faieza Andrews) assist us through out the year. We also have our hard workers, Hayley Rehbock and Nombeko Zaku, who assist in the Toy Library with welcoming our families and keeping the toys clean and well maintained for the next child to take out on loan.

We are sad to have had to bid farewell to Catherine Murray, the

Branch News

Support Cape Mogamat Rifaa Jappie who has Down syndrome is 58 years old and is seen here with his sister Faieza Andrews

Speech Therapist from the Speech Therapy Department at the Red Cross Children’s Hospital, and thank her for all her wonderful Speech Therapy sessions, ring times, and action songs, that helped our children with their speech and language development. The Speech Therapy Department has been an important part of the Toy Library for years.

We look forward to having the Speech Therapy Students from UCT who will be continuing with this service in the Toy Library on Tuesdays.

Family Counsellors

Welcome to Lizélle Bruinders and Marjory Phillips, our Family Counsellors, who joined our organisation in August 2012. We are so

happy to have you both with us, been hard at work helping our families. Both Family Counsellors are appointed through the generous funding received from the Department of Social Development.

Our families requiring counselling are seen on appointment basis.

Please call the office for more information.

Committee

These are our committee members, elected at the Annual General Meeting on 24 September 2011: Chairperson: Yusuf Davids, Vice-Chairperson: Koelsum Bibi Ghansar, Secretary: Natasha October, Treasurer: Lynne Rutherfoord, Committee Members: Latiefa Davids, Meiro Nisha Khan, Janap Daniels, Vincent Xego, Joy Davids and Farhaanah Ghansar (SelfAdvocate).

Thanks and Acknowledgements

Thanks go to the Red Cross Children’s Hospital, the University of Cape Town, our donors, staff, and volunteers, our caregivers and families, and especially to our babies, children and adults who have something extra special that makes you unique and beautiful, for you are the main reasons for our existence.

Contact details: Val Hoy Telephone: 021 689 1519 or 021 658 5610 (Toy Library) Cell: 082 424 6339 Email: downscape@gmail.com

Sibaleni Nathi- Volume 9

33

Branch News

Tshwane Fundraising

Golf Day/Winter’s Ball 2012

Self Advocates at the Winters Ball 2012

National Celebration Day

The Pretoria Branch celebrated National Down Syndrome day on 20 October at Zita Park. It was wonderful to see families spending time together, fathers playing cricket with their sons, moms getting into freezing water because their children wanted to swim. The facial expressions of the children when going down the slide into the pool was priceless!

An awareness day was celebrated at Kalafong Hospital targeting doctors, health care workers and students. The message was strong and clear: families had the right to be treated with respect, sensitivity around breaking the news and being told the truth about their child’s diagnosis.

34

27 teams competed in our Golf day which was held at Pebble Rock Country Club. We introduced a very exciting Golf format where it was a mystery who’s scores were going to count, but the players had a great time raising R180 000. Our Winter’s ball was held on 14 June 2012 with 280 people in attendance. Thys Streicher “Bosveldklong” once again did an outstanding job with Petra Le Roux and after some nail biting moments raised R240 000.

We want to thank all our supporters and sponsors for digging deep into their pockets.

Our Young adults co-hosted at both events and had a wonderful

Parents at the National Down Syndrome Day at Zita Park

Sibaleni Nathi- Volume 9

time socializing with special guests, Rian van Heerden, Arno Jordaan, Hykie Berg, Pieter Koen, Pieter Smith, Sonja Herholdt, Angelique Gerber, Ray Dylan and Jacques Botes.

Outreach Support Groups The Tshwane branch launched 3 new support groups in 2012 at the Stanza Bopapa Clinic in Mamelodi, Dr. George Mukhari Hospital in Garankuwa and at Kalafong Hospital in Attridgeville. Together with our Masakhane, Lyttelton and Steve Biko outreaches we are now based at every provincial hospital in Tshwane.

After initial setbacks, “Break the Barrier-Strengthen the Township” LEV project was officially launched in February 2012 and a group of 7 mothers were identified in the township of Attridgeville. It has indeed been a great privilege to be associated with such a dynamic group of women who have steadfastly broken down barriers of ignorance by organizing 2 huge awareness campaigns around International and National Down Syndrome Day.

Branch News

Tshwane Young adults and Self Advocate Group

If anyone should ask the young adults what event they enjoy the most, you will positively get the answer that it is their year-end dance!

Every year, they get the opportunity to walk down the red carpet, sip on a cocktail while sharing the latest gossip news. For the whole evening, they are treated like celebrities, enjoying a 3 course dinner, popping those champagne bottles and dancing like there is no tomorrow.

2012 was indeed a successful year for our self-advocate group. The group has grown to 13 young adults with meetings held once a month on a Saturday. The main focus of 2012 was on life skills.

The awards took place on the 12 October 2012 after a very successful 2 day workshop on multi-level teaching for teachers who have learners with special needs in their classroom. The event was sponsored by Nedbank in Sandton and was attended by Vanessa dos Santos (DSSA), Marie Schoeman (National Department of Education) and Gugu Khare (District Chief Educational Specialists).

Eight nominated schools and 23 educators received certificates of Excellence.

Miss Annelise Boot from Springvale Primary School was the proud recipient of the “Teacher of the Year Award” and received a lovely framed certificate and an Accer

Teacher Training and Teacher Excellence Awards Evening The Down Syndrome Association of Tshwane hosted its very first Awards evening in recognition of school principals and educators that have embraced the ideal that inclusive education is all about “Providing Good Education for All”.

laptop sponsored by Telestream Marketing. Miss Marguerite Marlow received the award for “Assistant of the Year”.

Parent Information Mornings

The following topics were covered: •7 March: Dr. Engela Honey gave us information on Health issues in children with Down syndrome.

•5 May: Mothers were invited for a pampering session to celebrate Mother’s day.

•9 June: Prof. G Tintinger gave a talk on Sleep apnea. He informed the parents about the importance of having children with Down syndrome tested for sleep apnea because of the negative effects this can have on their health and well-being.

•29 September: Dallen Taylor introduced the program Manners for Minors.

•10 November: Mrs. Marie Viviers spoke on Speech and Feeding Techniques.

Contact details:

Thameez Ramjas with teacher of the year Miss Annelise Boot

Petra Le Roux (Branch director) Telephone: 012 664 8871 Email: perta@downs.org.za Ancella Ramjas (Outreach & schooling) Email: ancella@downs.org.za

Sibaleni Nathi- Volume 9

35

Branch News

Western Cape D

SAWC has had a very trying 2012. Our funding did not come through as planned and we found ourselves in the unfortunate position of having to retrench all staff members, and cut back on expenses drastically without compromising our services. The only staff we could keep, because of private funding are the staff that work at Umthi Special Care Unit. Esther Adams and Tineke Boshoff have committed themselves to work voluntarily to keep the doors open.

The previous committee was voted out by the members, and a completely new committee was elected. The DSAWC has always been one of the strongest branches of DSSA and we are determined to get back to that point again.

Outreach Our outreach is run by Esther Adams, apart from the current outreaches that cover 17 areas in and around Cape Town as far as Ceres, we are proud to say we have added a new outreach at Paarl Hospital, once a month. The different outreach groups held numerous functions during the year.

These included social dances and a high tea. All the funds raised go directly to the Outreach groups.

36

Sibling Workshop

A sibling workshop was hosted for siblings of children who attend the Outreach groups. The workshop was coordinated by Meltem Dogru, a student from the University of Ghent who is completing a 6 month internship with DSAWC. This workshop formed part of her internship programme. The workshop was presented by Meltem Dogru, Esther Adams from DSAWC and Chantelle Scott from Tygerberg Hospital Genetics.

Leisure Libraries An art class takes place every 3rd Saturday of the month. The group consists of 25 young adults with Down syndrome and other

Sibaleni Nathi- Volume 9

Intellectual delays. All the conference bags for the World Down Syndrome Congress were completed during the course of a year, it proved to be a great project and was a huge success for all involved. We also had a display table at the congress where we sold additional bags, a group of young adults were also able to paint bags at the congress.

The Sokkie takes place on the last Friday of each month, this is a highlight for many of the adults who attend. We have started selling hotdogs at the sokkie, this allows us to generate a small income. Our DJ Jacques has been our DJ for the past 7 years and still offers his services at no cost!

Thank you Jacques!

Branch News

Western Cape Umthi Special Care Unit We are very fortunate that we received funding from the Tembaletu Fund. The funding gave us the opportunity to divide the class in two, a junior and senior group and were able to accept an additional 8 children. The class is situated on the grounds of the Stikland Hospital and we partner with the Department of Health and the Sivuyile Children’s Home. We now have a total of 16 children in the class. Reny Mohammed is the class coordinator who is doing a fantastic job. A year end function was hosted where every child received a certificate, and the children entertained staff and parents.

Cycle Tour The annual cycle tour finished at the Eljada Aftercare Centre in Oudtshoorn on the 2nd March 2013. Jan Malan with his daughter

Lynette and Tineke Boshoff with her son Kevin (both daughter and son have Down syndrome) accompanied the cyclists on their tour from Cape Town to Oudtshoorn.

We would like to thank Mountain View Cyclists for their willingness, the donors for their open handedness, and all involved for helping us to help others with Down syndrome and other Intellectual disabilities.

Staff

Committee Members

Contact details:

Jan Malan- Chairperson Ingrid de Jager- Vice Chair & Treasurer Anita Moorcroft- Secretary Marianne du Plessis, Clint Henderson, Hillette Henn, Motlalane Mabaso, Vuyiswa Maliti, Nonqubela Memo, Magdalene Organsie and Cathy van Rooi (all Board Member elected).

Ferial Charles, Leanne Marsh (both class assistants at Umthi Special Care Unit). Reny Mohamed (class coordinator).

Volunteer Staff

Esther Adams (Outreach Coordinator) and Tineke Boshoff (Liaison)

Tineke Boshoff Telephone: 021 919 8533 Email: info@downwc.co.za Situated in Belville Cape Town for any Outreach inquires please ask to speak to Esther Adams

Sibaleni Nathi- Volume 9

37

Branch News

Free State I

t is exciting to know that the Free State group is eight years old. We were fortunate that 8 delegates from our group attended the World Down Syndrome Congress. Three presentations were presented during the break away sessions and Sheri Brynard did the opening of the first Plenary Session. We are pleased that we are growing as a support group.

Early Intervention

Our group of babies with Down syndrome were part of a research project. 16 Babies younger than 42 months were included in this project. The findings of this PhD study were submitted in February 2013. The researcher, Dorothy Russell presented her findings at the World Down syndrome Congress.

The members of this group visit the Bloemfontein Child Information Centre every second week and this was made possible by a donation from a generous person from Bultfontein, Free State.

We are sadden that two babies passed away: Karabelo Pono and Noluthando Mxathule, our thoughts and prayers are with their families.

Self Help Group

A Self-Help group meeting was

38

held on Saturday, 15th September 2012. This was attended by 30 people, they included parents and children with Down syndrome and other intellectual disabilities.

As a result 5 groups have been established in different areas of the Free State.

Self Advocacy and Awareness Sheri Brynard and Tineke Hatting attended as self-advocates, the congress in August.

Sheri Brynard continues to raise awareness around the condition

Sibaleni Nathi- Volume 9

of Down syndrome . As a result more people can relate and feel more comfortable with the condition of Down syndrome. We need a person with Down syndrome of her calibre to help the public to be more positively aware of Down syndrome. Sheri is a public figure who does many talks and attends many functions, in her capacity as a self advocate. Sheri is also a recipient of many awards, of which we are all extremely proud.

Fundraising

We held a photo day on the 13 November 2012, where 10 parents took part. A professional photographer took photos and money towards the transport of these parents was sponsored.

Bea de Bruyn (her brother Fred has Down syndrome) from the High School Jacobsdal in the Free State, sold cupcakes at the school to supplement our transport expenses of the parents in the early intervention group.

Branch News

Nelson Mandela which turned out to be a wine tasting. De Wet Barry (ex Springbok rugby player) was the guest speaker.

T

he Port Elizabeth Support Group continues to grow from strength to strength.

Outreach

Our Outreach Programme in KwaZakhele & Motherwell as well as at Dora Nginza Hospital are very popular and well attended. The hospital, clinic and home visits in under-privileged communities done by our Outreach coordinators are still in great demand.

Fundraising

All of our fundraising events were very successful and attest to the general spirit and attitude of the parents and members of our community. We had fun at the cricket day where the winning team (Team Trace) received a floating trophy and each team member received a small trophy.

Vanessa dos Santos and Hayley Rehbock were guests of honour at our Genes and Jewel High Tea,

As in 2011, our golf day arranged by a benefactor was not only aimed at raising funds, but also to provide a day of fun and to raise awareness.

Both International- and National Awareness Days were well supported by the community and we experienced that people out there, do care.

Self Advocacy

The weekend of 14 – 16 November 2012, Vanessa and Tineke Boshoff visited us to facilitate the Self Advocacy training – “nothing about us, without us”. We were joined by Sonia Skein, two Self Advocates and a mother from Down Syndrome Association Amathole.

We all had a lot of fun, made new friends and to add to this, learnt a few new citations. The Self Advocacy group from PEDSA (Starfish), continue to meet once a month and are going from strength to strength.

Christmas Party

Father Christmas worked very hard in our area before Christmas.

He not only visited our members

Metropole at the clinic at Dora Nginza Hospital, but also the following day, where five residents from Lake Farm joined us for a breakfast at Ibhayi Guest Lodge. All received a small gift. This was accepted with appreciation and wonderment.

As for 2013, we aim to continue with the service we render, raise awareness and in general, to meet and exceed our vision and mission.

We would like to thank all of our members, staff and good friends for their continued support.

Contact details:

Wilna Gates Telephone: 081 524 5195 Cell: 082 594 0084 Email: wilna.pedsa@gmail.com

Sibaleni Nathi- Volume 9

39

Branch News

DSSA Outreaches Northern Cape- Kimberley

N

tombi Ndlovu is the new outreach co ordinator in Kimberly, working with Sister Suzy Peterson from Kimberly Hospital. National Down Syndrome day was celebrated at the Galeshewe Social centre and was in collaboration between the Department of Social Development, Department of Health, and Maphalane Disabled Children’s Trust and the Disabled Children’s Group.

A big thank you to all of them for their commitment and involvement. The aim of the event was to raise awareness and educate the public at large about Down syndrome and how to relate and understand people living with Down syndrome. We had learners from Boitumelo Special School, Jannie Brink and the Northern Cape Training Centre.

40

We also went to De Aar with the Department of Social Development for World Down Syndrome Day, where we shared information. In attendance were 35 social workers and 5 parents from surrounding towns.

On the 3rd December we celebrated International Day of the disabled, a big thank you to Maphalane Disabled Children’s Trust for their support. Ntombi received a certificate of appreciation from the Department of Social Development! Well done Ntombi we are proud of the growth of this group!

World Down Syndrome Day 2013 We held the World Down Syndrome Awareness Day at RC Elliot Park in Galeshewe on 21st March 2013. About 50 people attended and parents shared their life

Sibaleni Nathi- Volume 9

experiences about raising their children with disabilities and how to address challenges. We had a motivational speaker who encouraged parents to take their children to schools. A moment of silence was observed for a child who passed on in the group. We had lunch and after that we called it a day.

Branch News

DSSA Outreaches North West- Potchefstroom & Mafikeng Potchefstroom The outreach group has strengthened their network and visibility in the community by participating in the Tlokwe Disability Forum and other local government initiatives.

Betty left the group to pursue a career as a nursing assistant and Themba has been appointed the new outreach co ordinator.

In March 2012 World Down Syndrome Day was celebrated at the local taxi terminal in Ikageng were we raised awareness around the condition of Down syndrome.

National Down Syndrome day was celebrated at Potchefstroom Hospital on the 26 October 2012. The participants were addressed by Social workers, a dietician, Occupational Therapist and the officials of the School Health Services.

The World Down Syndrome Day celebrations were held at Mickey Mouse Domestic Animal Farm on 21 March 2013. 18 children, their parents and the staff members of Witrand Hospital attended the event. On arrival the manager of the farm gave a short presentation on environmental care. Elizabeth Vana made a presentation about Down syndrome. Children were

taken for a walk through the farm and shown how to feed and take care for the animals. They were also taken for donkey cart riding and horse riding. They rode on a cable over the water and what was most enjoyable was the boat ride. It was day to remember for children and parents.

Mafikeng The Mafikeng Outreach Group in partnership with North West Disability Forum organised a march to raise awareness on World Down Syndrome Day. Parents and the local community participated in the campaign which ended in Senkgwe Primary school in Magogwe Village.

At the school various speakers including Mr. Smuts Matshe the North West Disability Forum Coordinator addressed the people.

He thanked the outreach committee for their dedication and willingness to assist families of people with Down syndrome in the North West Province.

Sibaleni Nathi- Volume 9

41

Branch News

DSSA Outreaches Limpopo- Polokwane & Tzaneen Polokwane We celebrated National Down Syndrome Day in Seshego on 20th October 2012. To host the event we made use of an open space with a hired tent at the Seshego Plaza. We were given publicity and media coverage by Radio Thobela and Capricorn FM who interviewed Clara Mathosa and Grace Sekhu. The Review newspaper published an article about the event and the Capricorn local newspaper covered the event. We were so excited about this been the first event we organised. We had the attendance of 150 people comprising of parents, people with Down syndrome, teachers from Special schools and the community.

The World Down Syndrome Day was celebrated on the 21 March 2013 at the Polokwane Public Library. Our event was honoured by the presence of Mr. Mabote from the department of education, he applauded the organisations effort in creating awareness and promised to mobilize other stakeholders to rally and give support to the rights of people with Down

42

syndrome. Mr. Maphoto from the department of water affairs organised the sponsorship from his directorate for the venue and food. In his speech he infused confidence and encouragement to the parents and the organsation.

Our special guest for the event was Mr. Rasheku an educator and sports coach from Grace and Hope School. He showed video clips of a Special Olympics event in Australia and displayed trophies won by the learners he travelled with to Australia. Mr. Maffa was the master of ceremonies for the occasion and children from different schools rendered different musical and dancing performances. Miss Paulina from the department of education sang a melody and everyone enjoyed the celebrations.

The occasion was closed by a vote of thanks from Mrs Mogale and a prayer by Mrs Mary Malebana.

Thanks to all who made the event a success.

Tzaneen Our outreach group continues to work with members of the community who have Down syndrome and intellectual disabilities, as

Sibaleni Nathi- Volume 9

well as educating the community members about these conditions.

We have added a support group in N’wamitwa Village, there is a group of ladies who run a bakery which assists the community.

We celebrated National Down Syndrome Day on the 20 October 2012 where members of our support group got together to share information; we had a fun filled day with all our children and adults with Down syndrome and other intellectual disabilities.

Difference Motseo was interviewed by Breadwin Monyamane of Thobela Radio on the 21 March 2013 about World Down syndrome. The community on hearing announcements on radio that the World Down Syndrome Day celebrations will be held in N’wamitwa attended in large numbers. The local community leaders, teachers and priests from local churches also attended.

We as the Tzaneen outreach wish to thank the DSSA national office for making it possible for us to celebrate a successful day.

Branch News

DSSA Outreaches Mpumalanga- Witbank

W

e celebrated World Down Syndrome Day at Highveld Day on the 21 March 2012. Sandra Van Der Walt the general manager of Highveld mall invited parents and children for a scrumptious lunch at the Spur. The children also received Easter eggs and DVD’s. We wish to thank the Highveld Mall for their continued support.

On the 20 October 2012 the parents and children were able to have a fun packed day at the Pretoria Zoo to celebrate National Down Syndrome Day. E-TV also filmed the event which was broadcast on the national news that evening. Vanessa dos Santos, Roxanne Scholtz, Nicky Scholtz, Jaydin Scholtz and Dean Stanic also attended and gave support to our group. We wish to thank Midbank Bus Service, Chicken Lickin Witbank and Highveld Mall for their support.

The parents are realizing the benefits of being part of the group; some had the opportunity to attend the World Down Syndrome Congress. The efforts of Dr. Honey, Sister Doris Mofokeng, Lerato Mokoena and staff at the hospital are appreciated.

On the World Down Syndrome day held on 21 March 2013 we organised a soccer tournament at Lynnville Stadium. Ikwekwezi FM and Emalahleni Radio announced the tournament and conducted interviews about the Down syndrome awareness day. Four churches based in Lynnville competed in the tournament to raise awareness about Down syndrome.

Children were allowed to play during the breaks. The finalist were given the medals and trophies, children were also presented with medals for participating.

The event was well attended and we had a positive feedback from the community that they will in future assist whenever we had other projects.

We wish to thank the local community leaders , business people, Highveld Mall, Chickin Lickin and Coca Cola for their support for the event to be a success.

Sibaleni Nathi- Volume 9

43

Contact details: DSSA OFFICE National Executive Director Vanessa dos Santos (dssa@icon.co.za) National Organisational Development Officer Roxanne Scholtz (dssa.odo@icon.co.za) National Project Manager Jabulane Dikgale (dssa.pm@icon.co.za) National Officer Administrator Gloria Monare (dssaoffice@icon.co.za) DSSA OFFICE BEARERS Chairperson: Reggie Steenberg Vice Chairperson: Dumisile Khuzwayo Treasurer: Sonia Skein Secretary: Gina Phillips Additional Member: Klazina Hattingh BRANCH CONTACT DETAILS Amathole (East London): Denise Taylor (dsaael@telkomsa.net) Contact number: 043 722 4918 Gauteng: Marlene Boucher (marlene.dsag@megaweb.co.za) Contact number: 011 615 4180/011 484 6116 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: 031 464 2055 Tshwane: Petra Le Roux (petra@downs.org.za) Contact number: 012 664 8871 Western Cape (Belville): Tineke Boshoff (info@downwc.co.za) Contact number: 021 919 8533

Nelson Mandela Metrople (Port Elizabeth): Wilna Gates (wilna.pedsa@gmail.com) Contact number: 081 5245195 SUPPORT GROUP CONTACT DETAILS Free State: Dorothy Russel (russeldc@ufs.ac.za) Contact number: 051 405 3292 DSSA OUTREACH GROUP CONTACT DETAILS Limpopo: Tzaneen Difference Motseo Contact number: 078 246 0888 Polokwane Grace Sekhu Contact number: 083 268 3655 Mpumalanga Witbank Lerato Mokoena Contact number: 083 732 6189 Northern Cape Kimberley Ntombi Contact number: 078 567 8142 North West Potchefstroom Themba Ntshalantshali Contact number: 073 689 7134 Mafikeng Nontsikelelo Sojane Contact number: 078 594 8763