Joining Parties with no political agenda!

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Posted on 10th March 2010 by Gerhard Pieterse aka jail4bail in Autism | Local is lekke

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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.

DA - BETTER EDUCATION BRIGHTER FUTUREIn 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.

Ernie Els Tips “Keeping your eye on the ball”

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Posted on 2nd March 2010 by Gerhard Pieterse aka jail4bail in Autism | Real stories about real families with Autism

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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.”

Teenagers, the birds and the bee’s!

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Posted on 1st March 2010 by Gerhard Pieterse aka jail4bail in Autism | Real stories about real families with Autism

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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.

SA Government discriminate against Autism

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Posted on 20th April 2009 by Gerhard Pieterse aka jail4bail in Real stories about real families with Autism | Uncategorized

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I cannot sit day in and day out listening to all the bullshit  from Political Parties and Government alike. It’s time to take a stand against the discrimination against Individuals with Autism in South Africa.

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

Jail4Bail

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

Putting AUTISM on TOP - Kilimanjaro

Putting AUTISM on TOP - Kilimanjaro

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


“More children will be diagnosed with autism this year than with diabetes, cancer, & AIDS combined” World Autism Awerness Day

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Posted on 26th February 2009 by Gerhard Pieterse aka jail4bail in Autism | Real stories about real families with Autism | Uncategorized

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Autism is taking over the world in April 2009.

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?

South Africa rural reality

The mother of Autism in South Africa

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Posted on 23rd January 2009 by Gerhard Pieterse aka jail4bail in Real stories about real families with Autism | Uncategorized

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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.

Maggie Golding

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

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?

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.

love_someone1

The funnier side of child with Autism

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Posted on 26th December 2008 by Gerhard Pieterse aka jail4bail in Autism | Real stories about real families with Autism

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It is most likely that you reading my blog because Autism affects you in your family or you want to learn a little bit about a subject that keeps on popping up wherever you go .

Welcome to the club, my daughter Kendall was diagnosed with  severe ASD kendall-happy-monster at the age 3 years old. Kendall now 12 has very limited verbal communication skills however we understand her “code language” very well.  Kendall also presents some bizarre, challenging behavior which makes life interesting most of the time,  some days more than others.

Very recently in my daily routine fetching Kendall from School we stopped at the convenience store to pick up a couple of things.  I prepared Kendall at school that we are going to “Stop at the shop, to buy milk and bread” to reduce the amount of anxiety associated with change in routine.  Daddy and Kendall walk into the shop hand-in-hand too cute until Kendall decided she wants  “tweeties”.

Lesson: “We cannot always get Tweeties when we want to”, nothing different to any parenting recipe book.

I thought tantrum here we go, with a queue of about 10 shoppers behind us.  Kendall decided to show her disagreement in a different way. Legs spread shoulder width, she let out the loudest fart, which will make any man blush, about 4 on the Richter Scale.  Firm, but polite I asked her if she’s finished. I quickly paid for the milk & bread with my face color matching her red T-shirt, whilst listing to the comments behind me.

Receiving my change, with the most vile smell I could imagine, whilst a 2 meter clearing radius allowed us easy exit, out of this smelly situation.  You can’t unscramble, scrambled eggs so avoiding any eye contact, we made our great escape, without farting around.  I will visit the convenience store again in the future, just not sure when.

I tried to convince myself I am a good parent, being consistent dealing with different behavior and making the best of a shitty situation, without reaction.

People comment “You very special parents to be blessed ith a child with Autism”, Autism a blessing?

Autism becomes a life style, like don’t like it but deal with it, how many choices do you have? Ask  about 300 000 families in South Africa. Autism Spectrum Disorder prevalence 1:150, with 4 boys to 1 girl.

Autism -Part of our world, not a world apart.

Blogger virginity lost in 2008

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Posted on 15th December 2008 by Gerhard Pieterse aka jail4bail in Blogger virginity lost in 2008

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“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 cared enough about children, adults and their families affected by ASD (Autism Spectrum Disorder) to sacrifice 74 days of 2008 in a project called Jail4Bail. The primary objective to create meaningful awareness and secondary to raise much needed funds for Autism Western Cape. My life motto is simple ” Imagine what I would do, if I could do, all I can” – Prince

The 16th December we celebrate Reconciliation Day in South Africa and also Twitter Autism Day so you will be spammed again by #ASD, #Autism & #Autism Spectrum Disorder,  sorry for that however Autism – A part of our world, not a world apart.

Funny I feel  intimidated writing my first blog.

TOP 10 need to knows:

  1. Cafnic (Caffiene & Nicotine) addict,
  2. Dyslexic,
  3. Insomiac (Sleep is for people who has nothing else to do).
  4. 3 puppies (Jamie 2, Kendall 12,  Lee 18)
  5. Border Collie (Dickens)
  6. Obsessed with music (167 gig)
  7. Nick name: Big G (2 Meter,125 kg)
  8. Love beer, more please.
  9. 20 year old trapped in a 30 something body.
  10. Have a Tat, planning to add.

Bio on Facebook .

Ok, very proud for what I have done with my first blog post, after 2 cups of Americano at Vida e Cafe training on Wordpress.