Again, my Autistic child has to miss out …

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Posted on 1st April 2010 by Gerhard Pieterse aka jail4bail in Autism |Local is lekke |Real stories about real families with Autism |Uncategorized

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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.”

Follow Claire on Twitter

A father & grandfather’s call for support!

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Posted on 31st March 2010 by Gerhard Pieterse aka jail4bail in Autism |Real stories about real families with Autism |Uncategorized

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2 April 2010

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?

One day I will celebrate Human Rights Day!

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Posted on 21st March 2010 by Gerhard Pieterse aka jail4bail in Autism |Real stories about real families with Autism |Uncategorized

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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

I won’t let the sun go down on me!

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Posted on 19th March 2010 by Gerhard Pieterse aka jail4bail in Autism |Local is lekke |Real stories about real families with Autism

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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.

Autism is part of my life

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?


World Autism Awareness Day, 2 April 2009

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Posted on 2nd April 2009 by Gerhard Pieterse aka jail4bail in Autism |Real stories about real families with Autism

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Official WAAD Logo

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 -

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.

1. To summit Mount Kilimanjaro (Uhuru Peak - the highest point in Africa (5895m)

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.

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

My Christmas gift

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Posted on 21st December 2008 by Gerhard Pieterse aka jail4bail in Real stories about real families with Autism

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OK, so we spammed with commercials luring us to spend our hard earned cash, or credit cards in buying the perfect gift for our loved ones and especially the children. The magic of seeing children’s faces lighting up in anticipation of whats hiding behind the sexy wrapping is priceless, or is it?

Christmas makes me sad. Kendall my 12 year old Autistic daughter don’t share the normal anticipation of gifts. I have seen it too many times when family buying expensive gifts for children like Kendall and get offended by their reaction to the goodwill.

I want to tell a story and hope that we all can learn from it. The names have been changed.

Every year the Adams family get together for Christmas with the same routine. Jimmy’s house on Christmas morning for everybody to open their gifts together and then lunch at Tony’s.

Christmas morning, everybody gathers with the technicolor mache of gifts in all shapes and sizes. All the children have their turn to sit in the special chair to receive and open their gifts. The next door neighbours even got excited by the children’s happiness.

Little Julie (Jimmy’s daughter) is Autistic. She is very interested in the wrapping paper folding it and tearing it, whilst the other children open their gifts.

Then it was Julies turn in the hot spot. Her mom persuaded her to sit in the special chair and handed her the first gift, which she opened. Pretty doll got tossed, however she loved and appreciated the shiny wrapping paper.

Next aunty Jenny’s gift, with an action replay effect which carried on until the rest of the children grabbed some cool toys from the pile of gifts next to her.

Julies baby brother (Jamie) handed her the last gift. Jamie only 6 years old, handed Julie a partially covered shoe box too cute. Everybody wanted to see what he got for his sister. Julie opened with her face of a happy angel. Julie non-verbal jumped up and ran to her bedroom.

Nobody has ever seen Julie so excited. Jamie knew his sister the best. He knew what what was important to her and gave her exactly what she wanted, no expensive gifts, no pretty clothes.

Never have you seen anybody so excited about a shoebox full of newspapers strips.

Lesson: Do we know what makes other people happy or are we guessing?