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 hash tagged #102010 because of the significance of October 2010 in the life of my family. I learned from Round Table to “Adopt, Adapt, Improve” which has pretty much become my philosophy in life.
10 years ago Kendall our daughter was diagnosed with severe Autism, which was a pretty devastating time in our life. As a family we “adopted” this challenge as a family when we soon realised that there are very limited services available for children with Autism in South Africa.
We had to “Adapt” our life to the change and it was difficult when we realised that Kendall will always be dependent on us as her only support structure in her life. We invested our lives into ensuring that Kendall gets the best. This meant that we lost every thing we owned. I remember times of tutors buying us a bag of potatoes as only food in the house & walking to the shop with a plastic bag with bottles to get money for petrol. This we did based on “emotional blackmail” by private service providers, for gain & hiding behind religion, who casually made statements like: “she will talk within 6 months and will start in a normal school, all you have to do is…” Which naive parent wouldn’t give their life for their children.
We have lived Autism for the last 10 years trying to “improve” the life of other families sharing a lifestyle with Autism. In certain areas we failed horribly, but I feel that we have made a difference even if it’s a very small one.
October 2010 my family will “Adopt” the English lifestyle in the UK. I love South Africa with every drop of blood, however I need to look at what’s in the best interest of my family. I hope that what I have learned I will be able to contribute in a country where Government cares about it’s people, if they will have me.
We will be working our butt’s off until October, with some BIG changes about to happen which will change the face of Autism in South Africa, starting in April (Autism Awareness Month) and World Autism Awareness Day 2 April 2010.
Please “adopt” Autism to help us to “adapt and improve” the lives of people with Autism in South Africa.
“There is nothing magical about change, it is getting up of your ass and caring enough to take the first step to contribute to change on an issue you care about.” – Jody Williams – Nobel Prize Winner – 1997
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.
The 2nd April 2009 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, however in South Africa, Government continues to discriminate against the rights for people with 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.
So where did it start?
Are we missing the point of World Autism Day? Big hype with no action means nothing.
The South African Government up to date has not acknowledged WAAD in any way. Individual private organisations for profit jump at the opportunity to claim that they recover, even state that they cure Autism. These organisations usually target families of newly diagnosed, vulnerable families making false promises of recovery to improve their bottom line.
Please understand with appropriate intervention in a multi-disciplinary team dynamic, consisting of a toolbox of acknowledged therapies and interventions, most children’s developmental ability will improve significantly,however there is no cure for Autism.
It leaves me with the burning question? How to participate in World Autism Awareness Day 2 April 2009? What would you do to make a meaningful difference?
Putting AUTISM on TOP
I am committed to make a difference to Autism in South Africa and will do whatever it takes to achieve this. Today we launch our next project “Putting Autism on Top” – Climbing Kilimanjaro to raise meaningful awareness about Autism Spectrum Disorder.
Mount Kilimanjaro (Uhuru Peak – the highest point in Africa (5895m)
Please follow our progress and support our group of 10 volunteers, under the tour leader Sean Wisedale as we start the build-up and step-by-step to achieve our objective to “Putting AUTISM on TOP” .
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