One of my staff, who’s also a parent wrote this article about their experience with Autism. It reminded me again of the individual uniqueness of Autism. Claire gave me permission to publish this article.
“So it’s that time of year again, Easter weekend has arrived with much excitement for most. For me personally, it’s more of “oh crap” again.
One of the many down sides to Autism and trust me there are many, is that my daughter’s diet is very restricted. A common trait amongst many Autists is that they have certain food intolerances. Their bodies don’t have the ability to digest certain proteins. Foods like casein (protein found in dairy) and gluten (protein found in wheat) are two huge culprits! For Kelly though her food intolerance list unfortunately is more extensive. No two Autists are the same so therefore chances of intolerances being the same are slim. When she eats wheat or diary, her pupils become enlarged, her behaviour unmanagable, does not respond to us and pretty much it “out of reach” for an 18 hour period. These are only external symptoms, internally, damage is being done.
So my little 9 year old girl doesn’t get to enjoy Easter like most children do. My little girl doesn’t get to enjoy Easter egg hunts, eat Easter Eggs or eat Hot Cross Buns. In fact, my little girl doesn’t get to celebrate Easter. Before you go off giving me the drill about Easter being about God and not Easter Eggs let me just tell you, when you are 9 years old, the only thing you give a crap about is the chocolate eggs and the smell of Hot Cross Buns being toasted in the oven. You walk into shops and isles are dedicated to Easter Eggs, most of the time, the isle in which you wait to pay your bill whilst holding the hand of a child big eyed at the feast laid before her which she may not eat.
So a few years later we have started to get the hang of how to make Easter vanish as much as possible. See the thing is we have always tried so hard to not let Kelly feel “left out” in life. An impossible task, perhaps but we give it our best shot anyway. Our choice, sure, our child, our decision to make it a little less painful for her.
So this is the way we celebrate Easter….
Hide the Easter Eggs that belong to our 4yr old NT daughter (neuro-typical = ‘normal’) and make sure she gets them whilst Kelly is doing a fun activity outside.
No Easter Egg hunts at our house.
Easier to hide Easter by staying home than going away for the long weekend.
Hubby and I will buy Hot Cross Buns and eat them at night or at our offices.
Kelly does not get taken to the shops where food is sold whilst the Easter craze is happening.
Good Friday has become just Friday or Fish Braai day at a friend’s house.
Sunday, each of our girls gets given a coco based ‘chocolate’ and no issue is made around why.
Easter Monday has become Lucky Monday – lucky us for not having to go to work today and we survived the no-easter weekend!So whilst you are all sitting with your excited precious little one’s opening their Easter Eggs,hunting in the gardens, faces smeared with chocolate smiles, think of how many children who will not be sharing this joy. This happy time of year that most of us grew up with and took for granted, a tradition regardless, that I cannot share with my daughter.”
The April is Autism Awareness Month and 2nd April 2010 marks World Autism Awareness Day, an unprecedented global effort to heighten awareness about a disorder affecting about 67 Million families globally. Whilst we celebrate the rights and acknowledge people with Autism today, Governments support for people with Autism is extremely disappointing. International leaders have shown the public commitment to change the world of Autism.
More children will be diagnosed with Autism this year than with Diabetes, Cancer and AIDS combined. our aim is to create meaningful awareness and raise the necessary funding to provide services to children and adults with Autism that so desperately require our help and support.
Autism: “As a father and grandfather, I want to see more UN involvement” – Ban Ki-Moon (UN Secretary General)
What’s the reality in South Africa?
Government continues to discriminate against the basic human rights for people with Autism. The South African Government has not acknowledge the existence World Autism Awareness Day!
In South Africa, organisations, service providers, schools, families live with Autism on a daily basis with very limited to no funding from Government Departments. How long can the south African Government ignore the plight from parents and the United Nations to start taking part ownership of Autism in South Africa?
Dear President Zuma, I urge you to acknowledge and respect the rights of people with Autism Spectrum Disorder in South Africa. I further more request you to publicly pledge your personal support and motivate your Department to work in partnership with current service providers to create a better life for people with Autism and their families in South Africa.
Autism: “I deserve acceptance and respect as I am”
I suppose it’s a start with Government publishing an official acknowledgment of World Autism Awareness Day. Is this to be politically correct or is there any intention to do something about Autism in South Africa?
Yesterday was one of those “dad’s don’t like to talk about” days. I got emotional and cried like a BIG baby, because I don’t have the answers in coping with Kendall’s unique Autism. The perfect day started with a phone call in the bank, asking us me remove Kendall from her class, because of another attack on the her teacher. The poor dude have the evidence looking like and Adidas add walking around with his three-strip-plasters-scratch-marks on his arms and head. 100 opinions later, debriefing and Kendall was at home with a note in her daily communication book.
Live the life with Autism
I love my daughter toooooo much to consider the easy way out in dumping her in some “home, institution, nut house”, she’s my child & responsibility even if some fuck head’s refer to me as misrepresenting myself as a parent of a child with Autism, because I am not her biological father. The sperm donor’s role is limited to 1 Birthday card in 13 years, so fuck you.
I am writing this post to serve as a wake up call that Autism Spectrum Disorder is not just about the high functioning individuals on the Autism Spectrum. Like my family there are thousands of other families in South Africa struggling with it on a daily basis. Yes, I am pissed off that Government are not taking interest in Autism in South Africa, they have a duty to support families with Autism, but until some “fat cat” child’s is diagnosed with Autism and get off his fat arse to actually doing something for their own child, nothing will happen in South Africa.
Please don’t feel sorry for me & my family, you can do something about it, shout, scream, blog, fart, become the next president, get drunk, I don’t care what you do. I need to get the Autism awareness out there so that other families don’t have to deal with this on their own.
If you want to you can buy a badge in support of April Autism Awareness Month and World Autism Awareness Day (2 April 2010) for ZAR 5 to help me getting the word out there that more than 1% of our population in South Africa can not be ignored no more.
I received a pretty new brochure for the DA with the slogan “BETTER EDUCATION BRIGHTER FUTURE” which made me very excited that a political party cares about Education in South Africa.
In reading with great interest:
CREATING A SOCIETY WITH REAL OPPORTUNITIES FOR ALL
The DA’s vision for South Africa is a society with real opportunities for all. This requires quality education for all our children. Improving education is one of South Africa’s biggest challenges, following 15 years of decline in many schools. The DA pledges that, within 15 years of taking power nationally, all children will emerge from schools able to read, write and calculate at internationally benchmarked levels.
TO DO THIS , THE DA WILL START BY GETTING THE BASICS RIGHT
Teachers and officials will be present, punctual and prepared to do their jobs every day.
There will be a special emphasis on reading, writing and calculating in every classroom.
Principals and officials will be hels accountable for improving results through performance contracts with achievement targets for each school.
There will be good text books for each subject in every grade, ready for the start of each year.
Children will be tested for literacy and numeracy at the end of grades 3, 6 and 9.
At the beginning of each year parents will be informed of the standards their children should reach by the end of the year.
There will be support and training for teachers to achieve literacy and numeracy targets, and their administrative load will be reduced.
Principals will be offered specialised school management training.
Effective discipline will be established in schools.
There will be a special focus on attracting, retaining, and rewarding excellent teachers.
Options for higher education will be expanded to include vocational and skills training as well as university education.
Wow awesome vision for South Africa Education, however one small thing missing. Where would learners with special educational needs fit into the future of education in South Africa?
Currently funding for the development of additional LSEN (Learners with Special Educational Needs) schools seems to be non existing. Yes I am looking at this in a one sided as example, because I receive the calls from desperate parents with children diagnosed with Autism Spectrum Disorder looking for schools for their children. Current International Autism prevalence statistics indicate 1:158 ranging on different continents starting range from 1:86.
The current educational structure for autism in South Africa cannot cope with the demand with waiting list of up to 2 years.
Organisation working in the field of Autism function on their own financial ability to provide the best, individualised, quality education with dedicated and passionate staff, working their butts of everyday to change the lives of families.
It is time for Government and political parties to acknowledge that the prevalance of Autism Spectrum Disorder is increasing in epidemic proportion globally. Political parties and Government need to act now, learn for Gordon Brown and Barack Obama in taking ownership of Autism Spectrum Disorder.
Looking for information on Autism on the DA website resulted in
In order to be fair I did a search for Autism on all the other political parties website and no information available.
I can only therefore conclude that no political party in South Africa care or prioritise Autism in South Africa. On the 2nd of April 2010 Autism groups & Governments around the world will acknowledge World Autism Awareness Day .
I urge you to start looking at the constitutional rights to education of children with Autism in South Africa.
Jan Van Riebeeck landed and started invading South Africa so did Autism only 3 centuries later. The evolution of service delivery for IWA’s (Individuals With Autism) started in Cape Town in 1967 with the founding of The Society For Autistic Children – Western Cape (now Autism Western Cape).
I caught up with one of the pioneers of Autism in South Africa who has committed her life to make a difference to so many children and adults affected by Autism. Auntie Maggie (Margaret) Golding, as she is affectionately known, triggered by an particular interest in a ASD, started in 1952. Today she still forms part of the backbone and the evolution of Autism in South Africa.
Short Bio:
Margaret Golding qualified with a broad menu and holistic approach to cater for the unique individual educational needs of each child through the development and implementation of a cohesive educational policy which she is still practising today. Some highlights included the opening of ASD specific schools in the UK in the 60′s and the first ASD specific schools in Cape Town and Pretoria in the early 70′s.
The extremely humble great granny of 3, with her gentle voice and English accent, still fits Yoga, Gardening and cuisine cooking inbetween her travelling where she usually ends up working local or international.
Present involvement includes:
Governor of Vera School – Cape Town
Trustee of Hurdy Gurdy House – Cape Town
Member of the National Executive of Autism SA
Chairperson of Outreach, Education & Training Committee – Autism SA
Honorary member of Autism SA & Autism Western Cape
Keynote Speaker at the World Conference on Autism – Cape Town 2006
Paul Harris Rotary Award
What would you like to see happening in South Africa:
“I would like to see models of good practise being used by Government repeated and implemented for children and adults across the ASD spectrum. Support for learners in the mainstream education system and also for adults including residential homes. Job coaching and vocational support for those who are able to work through learnerships. Government Departments need to become partners and should take ownership by developing a cohesive policy in early childhood development and life long educational processes”
You have some interesting presentations. What is the “Hitchhikers Guide to Autism” about?
The infectiuos passion serves as a motivation to me in persisting with our Aims and Objectives of Autism Western Cape to make a meaningful difference through service delivery.
Thank you for your life commitment to Autism in South Africa.
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