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.”

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.

Mt. Kilimanjaro, Uhuru Peak - 5895m

Ok, so why would you want to pay a shit load  of money to go and suffer for six days on a mountain? I don’t think there could be any fundamental reason why anybody would take themselves out of their comfort zone, away from their friends and family if there is no purpose.

I work in the field of Autism and deal with the struggle of creating meaningful awareness around Autism Spectrum Disorder on a daily basis in South Africa. People just don’t know and care about Autism and therefore it’s my duty to inform people about Autism to be able to improve the lives of the children and adults in the care of Autism Western Cape.

So what was the Kilimanjaro trek about? The objective to create meaningful awareness by taking Autism to the highest level of priority through the symbolic climb of the highest freestanding mountain in the world and also highest point on the African continent. Turned out that our trek was the first summit on Kilimanjaro for Autism from the African continent.

Have I ever climbed a mountain? No, am I not a fitness fanatic, no, it hasn’t been my life dream to summit Kilimanjaro. I am just a parent with an Autistic child who cared enough to get off my butt and do something in which I believe and care about.

This was pretty much the same attitude of the rest of the Kili crew of 9 members, consisting of another dad, granddad, couple of friends and Sean Wisedale our tour leader and guide, who is the first person from the African continent to summit the 7 highest peaks on each continent. Our Kili trek turned out to be his 11^th summit, so we were in good hands.

Are we there yet, I need a smoke!

So, was it tough? The toughest thing I have ever done in my life. Taking one step at a time whilst not being able to breath, nausea, headaches, stomach burning, extremely cold, wet and limited sleep for 6 days. Thinking why am I doing this to myself spinning in your head pretty much most of the time and listing to the dreaded Pole-Pole (Slowly-Slowly) & “Guys we need to keep on moving”

We stayed in contact via some pretty cute technology, Twitter updating our every moment of the trek with Zoopy. We consistently got updated and also chatted to the families back home. Every encounter was very emotional, but at the same time served to keep us motivated based on the awesome amount of support, messages and comments.

The thought of “that’s enough I’m turning back” popped more and more as we went up in altitude, however the constant reminder of why we are doing it superseded all the other stuff. We had to summit, not negotiable. Summit night was the most difficult part with starting to walk to Stella Point (rim of the volcano, yes Kilimanjaro is a non-active volcano) at 11 at night only to reach Stella by 7 the next morning. Frozen water bottles, storm wind, Altitude sickness (Vomiting, extreme headaches, burning tummy, extreme difficulty in breathing etc.) could not stop this group of zombies to get to Uhuru Peak – 5895 m. I don’t know how I got from Stella to Uhuru peak, about a kilometre; I am told I walked like after a bottle of Captain Morgan.

The next I know I saw this sigh, which said, “Uhuru Peak – 5895 m, you are now on top of Africa”. It meant nothing to me at this stage; all I wanted to do is to get off this bloody mountain. It’s was only when I took the small frozen watertight bag out of my backpack, to open the different flags, that’s when I realised what we have done.

We have Put AUTISM on TOP – Kilimanjaro

So what’s next for Jail4Bail in 2010 in contributing to Autism in South Africa by creating meaningful awarness  around Autism Spectrum Disorder?

In planning watch this space heheheh!!

I facilitated a massive BEE deal with a difference, BEE threatened the safety of the children, staff and parents at Growth Through Knowledge School for Autistic Learners in Table View.

The staff advised me of some intrusive and unwelcome “squatters” moving in to our school and I took decisive action, to remove them with professional assistance.

The invasion turned in to education, with a sensory learning experience for the children and staff. The children investigated the delicate construction and structure of bees wax forming the comb through touching & feeling. The surprise of licking the sweet honey directly from the comb,which I admit was my first time to.

The photo’s of the kids will not be published by the request of the parents.

Up close and personal with honey:

How many human engineers will it take to construct?

Protecting the brood

I love BEE, our children and staff got the sweetest deal ever from nature. Nature is making a difference to the lives of our children affected by Autism Spectrum Disorder.

AUTISM – A PART OF OUR WORLD NOT A WORLD APART

]]> http://jail4bail.co.za/the-real-bee-deal/2009/09/feed/ 6 http://jail4bail.co.za/happy-birtday-to-me/2009/09/ http://jail4bail.co.za/happy-birtday-to-me/2009/09/#comments Mon, 14 Sep 2009 13:09:11 +0000 Gerhard Pieterse aka jail4bail http://jail4bail.co.za/?p=308 I am dyslexic and I love it, I can write whatever I want.

Turning 39 is no big deal, no milestone date other than just another birthday with not much planned other than spending time with my awesome family, the way I like it. I woke up with my wonderful Julie and kids bringing pressies and singing Happy Birthday to daddy. What a great feeling to be blessed with my family. Jamie’s excitement in opening the pressies created lots of giggles. Just another day, that is if you don’t have an child with Autism in you house hold. Let me make it clear Kendall has difficulties with her own unique Autism and no one person with Autism is the same.

How does this day change, like Cape Town weather, in a bit of a sad day and interesting day?

With the house hold in Sunday relax mode, all of us on our jammies, Kendall burst into a psychotic mode, ripping her clothes, screaming, hitting herself, biting her favourite finger, throwing furniture around the room and attacking me with hatred in her eyes. I looked a the clock in defending myself and Jamie, thinking it’s not even 12 o’clock. Happy Birthday to me.

Now, this is nothing new in our household with Kendall ripping her clothes pretty much everyday. I looked at Kendall, feeling the tears building, and released again, how lucky I am with having 2 other neurotypical monsters around, who by now has caused havoc in the rest of the house.

The trigger for this behavior was simply because Kendall wanted to watch Teletubbies, whilst -Rubberbubbers was on.

Kendall went from wildly aggressive to a giggly 12 year old angel over a bath. Julie slaving over lunch, the finest English food, which I am sure the Heart Foundation would not approve off, to feed 4 house holds. I watched Jamie and Kendall interacting thinking, how great it was to see them together, which is something you don’t see on a regular basis.

Grandma and grandad arrived with pressies, with more singing and excitement. Kendall changed her clothes, which in retrospect, we should have seen her communication, even if she’s non-verbal.

Only when it was time for grandma & grandad to say goodbye did we realise her anticipation. She wanted to go and sleep over. Monday being school and grandma & grandad going away for the week, it was no option.

It triggered deja vu like in the morning, this time more aggressive and intense. For some reason the anger was directed my way and I did very well not to get scratched, bitten or hurt in the process. Kendall is as strong as a bull. I battle with my 123kg over 2 meter frame to protect myself and the rest of the family when she gets herself in the state.

Eventually it was bed time without too many hassles, screams, shouts and furniture flying around. We removed her favorite throwing table form her room and the quite after the storm set in.

The day ended with a high, a Happy birthday call from my mom and dad. In their mid-seventies living on the same small holding in Jozi for the last 40 years, makes me concerned most of the time, but today was different, it was my birthday.

Dad came on, with Happy Birthday my son, and bursting into tears. I though shit I am on 39 years old dad it’s not that bad. My dad followed up with, the car broke down, top gasket and tyre gone, his hobby job as loft keeper (Racing Pigeons) for a friend ended, because the guys own the Receiver a big money, the Chow and 3 of the 6 puppies died of tick bite fever, (1 black Chow-Chow puppy was heading our way) and then the final bit, it seems that my dad has a growth in/on his Prostate which he and the GP is very worried about. Test and biopsy for later this week.

Mom didn’t sound much better through the tears.

and still

Jamie is singing: “Happy Bifday to loo, Happy bifday to loo, hipi, hipi horay”

More children will be diagnosed with Autism this year than with Diabetes, Cancer and AIDS combined. Current world ASD population is estimated at 67 Million people, with South Africa estimated at about 600 000  Individuals with Autism.

The Jonas Brothers supports Autism in America:

How can the South African Government ignore the epidemic?

For the last 7 years we have been playing by the rules and regulations of the Departments of Health, Social Development and Education, with very little impact. The Department of Health has negated on their commitment to take care of adults with Autism in South Africa against the grain of what the Department of Health stands  for:

In order to improve the quality of health care for everyone in the Western Cape, the Department of Health has committed itself to a long-term strategic plan called Healthcare 2010. This plan aims to reshape public health services in the Western Cape to focus on primary-level services, community-based care and preventative care.

Mission

Our mission is to improve the health of people in the Western Cape and beyond, by ensuring the provision of a balanced health care system, in partnership with stakeholders, within the context of optimal socio-economic development.

Vision

“Equal access to quality care”

The Department remains committed to the vision of providing better health care to communities. The vision of Healthcare 2010, “Equal access to quality care”, has become increasingly significant and consideration is being given to making this the vision statement of the Department as a whole. This vision statement is more consistent with the Departments central goals of accessibility, appropriateness, affordability, equity, effectiveness and efficiency.

One of our projects, named Hurdy Gurdy House has been in existence since 2001, providing a 24/7/365 home for 10 individuals on the Autism Spectrum presenting challenging and aggressive behaviour. The residents cannot be accommodated in any other environment due to the nature of thier difficulties, previously from Alexandra Hospital Psychiatric unit. The residents were moved based on the Dept. Heath’s 2010 Hospital Care plan which dictates the reduction of beds in Government psychiatric hospitals and quality of service provision which is too disgusting to even mention.

3 Years we have submitted funding applications to the Dept. Health Western Cape for financial assistance for the residential care project with very limited or no communication.  The lastest application was submitted in Febraury 2009 based on the prescribed procedure.

We submitted reams of paper conforming under the exact format, proving that we need funding to sustain the HGH project or alternatively face the closure of the project as  soon as the end of May 2009. We have been following up as a matter of urgency with no joy. Telephonic communication with 7 individual representatives passing the buck resulted in discussion with a lady by the name of Carol Dean & Pat Collis, both requested to put it forward as matter of urgency via e-mail 8  April 2009.

Dear Carol,

Thank you for taking the time for our telephonic discussion. As discussed for the last 2 years we’ve had various discussions regarding funding for Autism Western Cape. Various site visits including Mrs. Marinda Roelofse and Mr Titus and correspondence with Mrs. Pat Collis resulted into our latest application being declined.

The reality is simple, if we do not get funding from your Department we will be forced close Hurdy Gurdy House, currently under the management of Autism Western Cape. We are currently providing 24 hours residential care to 10 residents who cannot be reintegrated to any Government Psychiatric Service based on the Hospital Care Plan 2010.

The project has been running since 2001 and we cannot sustain the existence of the project on our own and parent resources in a very challenging economic environment. Parents are currently contributing R 5000 per month and we cannot increase any fees.

Should we have to close the project your Department will have to take responsibility for the said residents based on the fact that the residents present challenging and aggressive behaviour and CANNOT be incorporated into any other service.

This is a very serious matter, without at least R 300 000 financial support, we will have no choice but to close down the said project by the end of May 2009.

We are currently doing everything in our ability to ensure the existence of the project; however we will not be able to do it with immediate intervention from your Department.

With NO response I attempted  again on the 14th April 2009 to establish dialogue:

Dear Carol,

Since my previous mail I have received no correspondence, response or acknowledgement for any of the recipients included in my e-mail dated 8 April 2009.

I have furthermore not received any formal response regarding the application submitted to the Department of Health re funding for Hurdy Gurdy House.

Please advise.

Today I received the formal reply for Pat Collis:

The Metro District Health Services are unable to fund Hurdy Gurdy in this financial year. It is with regret that we are unable to do so. Regards Pat Collis. Should you wish to email me Pcollis@pgwc.gov.za. A formal letter of regret will be sent to your organization.

Sorry not good enough, if you do not have funding available is because you are not competent in your position, because you did not apply to national treasury for budget and how do you justify underspending in your department?

Please tell me what more do I have to do to get the Western Cape Department of Health to take responsibility for the most vulnerable of society?

I have committed to do whatever it takes to make a difference to Autism in South Africa, sitting 74 days in  “Jail Cell” :

Jail4Bail

In November 2009 we will be “Putting AUTISM to the TOP – Kilimanjaro”

Putting AUTISM on TOP - Kilimanjaro

WHAT ELSE CAN I DO TO GET THE GOVERNMENT IN SOUTH AFRICA TO TAKE AUTISM SERIOUSLY?

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?

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 and raise R1 Million for Autism.

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” .

Follow us on Twitter, Zoopy, Autism Western Cape, My blog, Facebook,

AUTISM – A PART OF OUR WORLD, NOT A WORLD APART.

WAAD (World Autism Awareness Day) was proclaimed 2nd April annually, which started in 2008.

The Autism World had this to say:

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?

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

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?

It is how we changed our ways of educating children on the ASD spectrum. The evolution, changed perceptions and a better understanding of Autism to provide quality education. The “THE HITCHIKER GUIDE TO AUTISM – AN EDUCATOR’S UNIQUE ACCOUNT OF THE HISTORY OF AUTISM AND THE DEVELOPMENT  OF A RELEVANT CURRICULUM – 1957 -2008″

What does the “Theory of Mind” means in simple terms?

The “THEORY OF MIND” , I can give some examples, which includes, “SOCIAL SHARED MEANING INDEIFFERECES” and “LITERAL UNDERSTANDING OF SHARED MEANING” to illustrate some of the the complexities of ASD.

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.