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?
Tomorrow I have to drop of Ken & Jen (Julie’s parents) going back to the UK after living in South Africa for the last 28 years. When seeing how their whole history packet in a couple of boxes, listing to your voice echoing through the empty house , you realise your only real support structure is leaving. I took Tyson to the Vet on Saturday to send him to doggy heaven after 13 years, we had an awesome last beer & braai at our place yesterday, pretty much an emotional roller coaster all round. I am also saying goodbye to one of my best friends, watching sport together, share the love of beer, aways being there for each other, always.
We have started the process of explaining to the kids that “Grandma & Gran dad is going on a big aeroplane to England” which means very little if you are 3 years old. How do you explain the concept to your nonverbal daughter with Autism? Simply stated the same way you would explain it to any other child of 13 years old. The difference is how much would she understand? How will she communicate it back, usually in behavioral differences.
It’s bizarre how life works. My parents live in Jozi and we see them twice a year. Mom and dad made their booking to come down to Cape Town for a couple of days arriving at 12:00 and Ken & Jen are leaving at 9:30. Exciting times for us hopefully absorb some of the blow of Julie’s folks leaving.
What’s gonna happen when they go back to Jozi?
If the UK allows my entry, we will be making our new home before my 40th in September, so at least something to look forward to, BUT leaving your 75plus parents behind in South Africa, not nice. This visit might be the last time we spend time together before we leave, not sure if I will see them again with their age creeping up and their health not improving.
This week was the most difficult days in my life I’ve had to face my own reality with Autism. We established additional school for learners with Autism 5 years ago, due to the demand for additional educational service, because the South African Government don’t give a shit about Autism in South Africa.
We established the school to provide for the basic Human Right to Education for all children, not for Kendall but for the rest of the children benefiting from it today. This week the staff individually looked in the eyes and told me “I’m not prepared to work with your child, because of who she is”. Kendall’s unique Autism presents anxiety, self injury, unpredictable challenging behavior and she gets aggressive. We don’t have the answers. We have looked at it in every thinkable way ranging from medication, holistic, therapy to alternative healing methods.
How do you digest the fact that there are nobody who are prepared to love and care for your child other than you. In leaving the school Kendall gave me a hug and a smile, and that’s good enough for me. She don’t have to talk to be able to communicate with me, I know the who’s inside those beautiful blue eyes.
Who other then us as parents will fight for the rights of our children?
I think if Kendall would have a song to communicate her perception on life it would be:
“Hands”
If I could tell the world just one thing
It would be that we’re all OK
And not to worry ’cause worry is wasteful
And useless in times like these
I won’t be made useless
I won’t be idle with despair
I will gather myself around my faith
For light does the darkness most fear
My hands are small, I know
But they’re not yours, they are my own
And I am never broken
Poverty stole your golden shoes
It didn’t steal your laughter
And heartache came to visit me
But I knew it wasn’t ever after
We’ll fight, not out of spite
For someone must stand up for what’s right
‘Cause where there’s a man who has no voice
There ours shall go singing
My hands are small I know
But they’re not yours, they are my own
But they’re not yours, they are my own
I am never broken
In the end only kindness matters
I will get down on my knees, and I will pray
We are God’s eyes
God’s hands
God’s mind
We are God’s eyes
God’s hands
God’s heart
We are God’s eyes
God’s hands
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.
Proudly South African Ernie Els to Receive GWAA‘s Bartlett Award
Ernie Els is one of the most successful golfers in the history of the game, having won more than 60 professional tournaments, including two US Opens, an Open Championship, and a record seven World Matchplay titles. The international scope of his victories is second to none. He is one of golf’s truly global players.
Ernie was born in South Africa on 17th October 1969. As a youngster, he was outstanding in soccer, cricket, rugby and tennis. At the age of 14 played off a scratch handicap, not bad for a boy from the East Rand in Johannesburg South Africa. His towering 6ft frame and gentle personality earned him the nick name “The BIG easy”
His classic, powerful golf swing is universally admired, and aspired to, from both sides of the ropes. And while his easy-going nature masks a fierce competitive drive, it is all of these qualities, along with an engaging on-course persona, that have helped make Ernie one of the most popular golfers in the game today. Now Ernie is one of the most respected golfers, for facing one of the biggest challenges of his life with the introduction of Autism into his family and speaking publicly about it in 2008 for the first time.
“Liezl and I are private people, but we are also very much in the public eye and we recognise that this gives us a platform to help raise funds and awareness for the causes of Autism and its possible treatments. It is something that we both feel very passionate about” said Els
He and wife Liezl founded the Els Autism Foundation in 2009 supporting Autism internationally and also in South Africa which will always be his home.
The award, named for the first secretary of the GWAA, is given to a professional golfer for his/her unselfish contributions to the betterment of society. Els will be honored at the GWAA Annual Awards Dinner April 7 in Augusta, Ga. Els follows Tiger Woods (2007), Greg Norman (2008) and Jack Nicklaus (2009) in receiving the Bartlett Award. Former GWAA President and chairman of the Bartlett committee, Tim Rosaforte, said Els “epitomizes the spirit of the award”
“Years from now people may remember me as a golfer and a major champion. But I’d like also to be remembered as somebody who took the issue of Autism and did something with it. The rest of my life, I’ll be fighting this thing…I hope you’ll join with me.”
Ok, so if you are a parent blessed by having a daughter your sleepless nights starts when puberty sets in. Somewhere the time will come when you have to gather the courage to have “the talk” about the birds and the bee’s. Thank goodness I missed the session because Kendall surprised us at the age of 10 in becoming a woman. How do you explain the birds & the bee’s to a non verbal girl with Autism? No different than how you would explain it to a “normal” girl. How they cope and deal with it is where the fun starts. Going through “that week” of the month, we soon learned would not be an option. In very Autistic logical, methodical and literal thinking “if it bleeds it’s must be broken” which in Kendall’s case created a very messy affair.
Our options consisted on “the Pill”, bi-monthly injections or Hysterectomy. Out of my experience most woman forget to take it, oops, that’s why we also have a 3 year old running around. There goes “the Pill” idea. Hysterectomy involves intrusive surgery & conflicting legal issues, so we opted for bi-monthly injections. Thinking in an Autistic way “why the hell would you inject me if I’m not sick?”
We had to overcome the trauma of phobia for needles, fortunately Kendall manage the injection part fairly ok, I am the pale one after the injection. We have our system which stays consistent every time. Verbal prep starts about 2 days in advance. On arrival the nursing sister would load up around the corner, Kendall bend over, I start sweating, we starting to count 1, 2, 3 pain in the ass starts, whilst we count to 10 and all finish & done. My sigh of relief in getting the next date 2 months before the next sweat.
I should feel privileged that Kendall will only go with me, the times Julie took her she nearly cost us half our annual salary. The other half of our annual salary we spend on replacing clothes for Kendall. The injection (and yes we have tried all of them) created nice hormonal moments, which we can track through emotional most of the time aggressive outbursts. The peeps at PEP(boutique) think there must be something wrong with Julie buying new clothes every second day. The injections also contribute significantly to weight gain, with a constant 70kg for a 13 year old on a well balanced diet. We don’t feed our kids crap like MaccyD’s. We are lucky, some families really struggle with girls and how nature always works in cycles.
Just a peak into to a daily reality in the life of the Adams family.
Please click here to download the plugin required to make recent comments work!