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.
So what has happened since WAAD 2008 Internationally?
Autism became a political ball game internationally. US elect Barack Obama took action , the Government in the UK took action, and one have to ask why? Would it be to gain votes or is it because reality has set in that Autism Spectrum Disorder is currently affecting 67 Million world wide?
What did parents have to say?
Jeanette ODonnell mother of 6 children of which 5 on the Autism Spectrum said:
We will see families struggling for services and education. We will see Jenny McCarthy, yet again, telling us about her knowledge about Autism and “curing”, “recovering”, “almost curing” her son….maybe she will make up her mind this time. She will go head-to-head with prominent doctors about vaccines and Autism…now that will be worth watching.
We will see Larry King massacre the pronunciation of Autism…
We will see families with multiple children saying how difficult their lives are by having so many children with Autism. We will see meltdowns and temper tantrums. We will see tears flowing from the faces of parent’s who envisioned a better future for their children.
What we won’t see is children and adults with Autism actually thriving in our communities. You won’t see that there are children getting better and thriving every day. You won’t see promotions for amazing programs out there that are seeing results from Sensory Integration Therapies and Play Therapies.
You won’t see children with Autism who can go to school, sit quietly and respectfully in a classroom, because they have been inclusioned since 5 years old. You won’t see parent’s who have worked hard with their children and not allowed inappropriate behaviors in public….
Instead, we are going to be subjected to the “gloom and doom” bias of Autism. The Autism that requires a parent to slap a tee shirt on their child and blame their Autism for their behaviors. It is much easier not to parent that way. We are going to get to see mothers and fathers crying about the child they were supposed to have, instead of the glory of the child who is sitting right in front of them.
I think I will celebrate WORLD AUTISM DAY in our home. I will remind my children to be on their best behaviors today…because the WORLD is watching them. I will let them know they are the most wonderful, amazing children in the WORLD and I am so very proud to be their Mother.
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 jumps 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 an multi-disciplinary team dynamic, consisting of a toolbox of acknowledged therapies and interventions most children’s developmental ability will improve significantly .
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?
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