Kendall & Jamie aka @JumaJubs

Kendall's Autistic way of give some love

Boys with noise toys.

Watching your family leaving, never nice!

Neat and lonely!

Why do we only realise what we have , in the times when don’t have it?

On the 16th of June 2008 I started a project called Jail4Bail which changed most probably everything in my understanding of life.

This is a picture story in a couple of moments of a Jail4Bail which took 74 days of my life, and more important, took 74 days of my family in making a difference to Autism in South Africa.

16 June 2008

Reality sets in.

Finger Printed

Schackled

Cuffed

Loaded

Never a nice place to!

Offloaded

Bayside Arrival

Entering my new home

My basic home

Day 1 of 74

Bad hair-day

Worse hair-day

The start of a journey

We love our new puppy!

It’s the size of a horse!

It’s hungry!

mmmmmmmmmm we should call him?

Dear Telkom,

This is an open letter to any representative of Telkom to respond, however I am sure you won’t because your system will not allow it nor would your staff.

I have a VIP status with Telkom in my personal capacity. I can assure you, it’s not because I love a telephone. It’s simply because Telkom don’t allow for discounted structures for Non -Profitable Organisations in South Africa. You don’t need to be too clever to understand that charges NPO’s the same rates as any business account, hence all accounts for Autism Western Cape has been in  my personal name since 2000.

I can provide the proof that Autism Western Cape has paid the accounts via cheque since 2000, which means absolutely nothing to Telkom, when I tried to change the accounts into Autism Western Cape’s name. I was required to pay R 700 as a deposit, which are retained should Autism Western Cape default on the account which consists of 6 lines. This in not negotiable payable now, no transfer happening until it’s paid, with no option to add it to the account. Why, because the system said so!

Stealing money from a Charity!

After an hour of cramp-in-hand paperwork, all accounts were transferred into Autism Western Cape’s name who are now forced to pay business rates on our account, which led to my next obvious debate.

“What discount structures are in place with Telkom for Non Profitable Organisations?”  simple answer “Nothing”! I could not accept this and requested politely to speak to a senior person in the Bayside branch or any person which I could speak to to change the “system”. After 6 phone calls I was handed a number 012 311-6026 with Mrs. Cathy Van Wyk’s number on to discuss the issue. I’t made sense to me to phone her whilst being at the desk of Thabang Magane (Consultant) to implement any resolved discussion, however Thabang indicated to me that I may not use her phone to contact Cathy because ” the call will go onto her name and customer are not allowed to use the telephones inside the branch.” Yes my heart skipped a couple of beats, trying to objectively explain to her what she was telling me “that Telkom don’t allow customer to phone another division in Telkom from a branch?” I had the option of using my mobile or phone from my office where Telkom will charge me my new acquire business rate.

Getting back to the office with sense of humor failure I called Mrs. Van Wyk who head up the Department for Final Notices, that’s the last Department your account will go to before you are handed over to the attorneys for collection of you outstanding moneys on your account. I wanted to give her final notice of our accounts, however she sincerely wanted to assist and gave me the number for Marcia 012 311-2186, who will be able to assist resolving this matter.

I confused Marcia with my query because Marcia works for the Telkom Foundation which provide grants to Non-Profitable Organisations and had nothing to do with costing structures on existing accounts. Another hour of Telkom self enrichment on my newly acquired Business account. Marcia suggested to speak her collgue Mr. Noksinathi Pashana on 012 311-2328, who I soon learned was a project manager at the Telkom Foundation and has nothing to do with my question, nor did he know who to ask. He committed to phone me back in 24 hours.

So next I visited the Telkom Website, which makes no provision for any specific queries, however the 10217 number won’t cost me. After speaking to 4 call centre staff I manage to get through to Moses Munsami (Call Centre Manger), who referred me back to Bayside Branch, and confirmed that they don’t work with those types of queries at call centre level.

Ruben September CEO Telkom

I can’t accept that Telkom has no discounted structures in place for Non-Profit Organisation in South Africa. I want it in writing from the CEO of Telkom, Mr. Ruben September. I have managed to get hold of Sipihwe Mndebele on 012 311-7679 in the office of Mr. September.

And now we wait! What would be the reply I get?

Day 2:

Round 1 went to Telkom with a convincing display of corporate arrogance. If it wasn’t enough, Telkom applied dirty tactics with a morning greeting at the office of no ADSL. Mweb confirmed the problem lies with Telkom. I was greeted very friendly by Andre’ at  on the Telkom Desk Top support line (0800375375). The investigation started, line fault logged however the account was suspended due to no payment received.

All accounts are paid at the same time why would one number connected to the ADSL not be paid?

10210 is a Free call, bargain, to clarify this matter. Precious Ndimande did her in dept investigation. I confirmed the following:

Telkom account payment due date 7 May 2010, which was paid on:

Yip paid in full, the 28th of April 2010. The debate of 22 minutes around the payment issue ended with Precious cutting me somehow ending the call. Redialing the 10210 number I hope that I will not get through to Precious, because of my potential sense of humor failure. Onele Soci answered the phone like you would 8:00 on a Monday morning. I am convinced that she’s not working on the same system because, she could immediately see that the account was fully paid up to date. She did suggest that I go back to technical support and ask tem to phone her back to confirm that the account was not suspended.

A miracle happened the phone & ADSL just started working again!

Now we still need to get back to the original Telkom question. Mr. September would you like to respond to your customer service levels and why you are discriminating against NPO’s who are doing the best they can with very limited resources in making a difference in the the lives of soo many vulnerable people in South Africa

I insist on a reply!

Day 3:

I received a call from Nkosi 012 311-2328 from the Telkom Foundation, who wanted to give me feedback from our discussion on Monday. Nkosi send out various internal e-mail’s within the Telkom group to get clarity on discount structures for NPO’s, without any feedback. He will keep on followup because he also see the need for such discounted structures for NPO’s.

The Telkom Foundation understands how NPO’s work and what their needs are!

Telkom tech called to confirm physical address to fix the ADSL problem from Monday.

Day4

Telkom you are exciting me by the day, not in a good way. The purpose of disconnecting my Fundraisers direct number (021) 556-6628 and my accounts department number (021) 557-3548 would be?

Account inquiries on 10210 answered by Zacharia Khan confirmed lines suspended by Bayside branch of Telkom. Thabang Magane (Consultant) only transferred 2 of the 6 lines from Gerhard Pieterse to Autism Western Cape, which was all recorded on the same document.

Zacharia Khan send e-mail to Thabang Magane at 12:00 to contact me, to get these issues resolved.

So I have a school for Autistic learners, a adult residential care project, a fundraiser and my accounts department without any communication.

Zacharia Khan at the call centre tried to fix the problem however due “contract suspension” don’t have access, to the system 40 minutes later, informed me to go back to Telkom Bayside branch Thabang Magane (Consultant) to get the issue resolved.

I might commit a crime walking into Telkom Bayside, will go later when I have calmed down to a mild panic.

I did however get the following SMS from Nkosinathi Pashana (Telkom Foundation)

Dear Gert,

Gert please be informed that there is no discounted price for NPO’s. I have been told that all Telkom tariffed services are on a non-discriminatory basis and therefore irrespective of the nature of the business, these tariffs will be applied uniformly. For further clarity you are welcome to contact Taazmin Mohamed on 012 311-8417

send via 012 311-2328

So for now we have reverted all the accounts into my personal name, until we can resolve the matter. I subsequently discovered that all our communication was disconnected for the same reason: Non-Payment.

Week 3: June 2010

Started the day with a phone call this morning from one of my staff confirming that the line at Growth Through Knowledge School for learners with Autism was disconnected due to non-payment. I think I should add my weekly visit to Telkom Bayside on my weekly appointment schedule. The branch manager Faffa De Jager saw my “ALL OUR ACCOUNTS AREA PAID IN FULL BEFORE MONTH END” facial expression, and quickly made a his way out of the branch handing me over to a very competent Emiel.

Proof: (AGAIN):

Invoice date 7 June 2010

Account was paid on the:

Account paid 28 May 2010

After 1 hour we agreed that all the accounts is still in my name, however I have a second profile with an account balance outstanding of R309.11, since Feb this year.

Now the statements confirmed that all number are on 1 statement, so where Telkom, very creatively added an additional profile onto my account, with the said amount outstanding. We couldn’t find any proof of payment so therefore I had to pay the account, before any of the other lines, including ADSL would be reinstated. Only after payment was made could we lodge a dispute which would take 2 weeks. Payment was made :

All lines active, and a dispute can be lodge. I asked why the R 700 of 2 weeks ago was not reflecting on my account? After 30 minutes we discovered that the R700 deposit was paid to a open and then closed account under the name of Autism Western Cape. So that amount is sitting somewhere in the Telkom system and it would take 2 weeks for it to be refunded.

Oh, and yet I need to get a response from Telkom regarding the price structure for NPO’s in South Africa.

A group of men growing their beards in solidarity to support a fight that’s been going on since 1943. The fight started by Dr. Leon Kanner by identifying a community of people, who are still discriminated against today.

Now these beard growing men are saying NO MORE, standing up for these rights until the BIG day 15 July 2010, when they will reveal themselves. Who knows what this will mean in South Africa? I deem it my duty to expose them.

Do you know the following faces:

The Leader

He’s known as Paul Scott to his friends and family. He has been seen in the Cape Town area.

The 5 year man

He’s know to his friends and family as Adin Van Ryneveld also been see in the Cape Town area.

The UK leader

Known to his friends and family as Ken Treloar. He was spotted in Cape Town, however rumor has it that he went to the UK to grow the movement in North Yorkshire.

The men should not be approached without respect & appreciation for they have committed to grow their beards to stand up for what they believe in. After investigation I found a link to codename “beardbets” where most of their activity takes place.

If you spot, encounter or come across any of these individuals please write you comments on this post and Tweet about it!

It’s our duty to keep a watch full eye over this group of men. They might just change the wwworld for some people.

“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

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?

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

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

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.

“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