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?

NOW HOW AWESOME IS THAT!

Like a little boy the morning of Christmas I opened my party pack to find the following goodies:

2 x Tickets to Portugal vs Korea DPR (Cat 2) on the 21st June at the Cape Town Stadium

1 x FNB VISA Gift Card with R150 for “refreshments” (beer)

2 x Complimentary FNB 2010 beanies, scarves, rain Ponchos, Zukami Pins, Key-rings, bag-tags

My FNB FIFA Party Pack

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

I love Monday

Grant me the serenity to accept the things I cannot change,
The courage to change the things I cannot accept,
And the wisdom to hide the bodies of those people I had to kill today because they pissed me off.

And also, help me to be careful of the toes I step on today

As they may be connected to the ass that I have to kiss tomorrow.

Help me to always give 100% at work…
12% on Monday, 23% on Tuesday,40% on Wenesday, 20% on Thursday, and 5% on Friday.

And help me to remember…

When I’m having a really bad day,

And it seems that people are trying to piss me off,
That it takes 42 muscles to frown
And only 4 to extend my middle finger and tell them to bite me.

Enjoy your day!

We love our new puppy!

It’s the size of a horse!

It’s hungry!

mmmmmmmmmm we should call him?

Let me make it very clear this is no attack on Bayside Mall or Canal Walk this is a reality check for parents.

How often do you drop your kids at a shopping mall?

Most kids especially in their teen’s hangout at the Malls over South Africa and in other countries for that matter. This is the place where they meet their friends, hangout, go to movies, get some take a ways and enjoy all the entertainment the Mall has to offer with lots of security around, yes? Mommy and daddy are very happy to drop the kids off, even taking turns to drop and fetch, their precious little angels in a safe protected environment, right?

Yeh sure, how stupid could you be as a parent to believe or trust this? Do you actually get you butt out of your car and go inside to see your little angel purchase the actual movie ticket? NO you Don’t! Every Friday and Saturday evening it looks more like a drop-and-go zone at the airport, parents dumping their kids and their friends, to get rid of them with guilt money ranging between R50-200 to get them out of your hair.

So let’s look at what your kids are actually doing and what they are exposed to?

The drug dealers specifically targeting your child. They need that R50 note you gave you baby to ensure their stock turnover and cash flow. The basic MO would be a 20-24 year old dealer would have a group of 8-12 of kids between 10 -15 years old selling drugs to their peers. The dealer know and understand that child act protect the rights of children under the age of 16 not much will happen to them if caught, other than parents being contacted to remove them from the centre.

By the time you collect you precious cargo as responsible parent stopping in front of the exit, usually between 10 -12, your child is of his/her high. Very excited to tell you about the movie they watched, with stub in hand which they collected from trashcans, every body goes home happy. Only to repeat the next weekend. Yes that’s your little angel I am talking about!

That is if you come and fetch your kids yourself! Every weekend I had to see kids as young as 10 years old, not having a lift home at sometimes 3am on a Sunday morning. Nobody will tell you that the friends’ mom was so pissed that she could hardly walk collecting “the kids” at 2 am and driving them home.

The centre’s management and security calls your kids “Mall -Rats” the kids whose parent have no clue where they are and what they do over weekends at the Malls.

You may argue that you trust your child, and they will never lie to you, like you never did when you were their age, right? The main difference now is drugs, abuse, child porn, rape etc. more in your face than ever before. You may argue but “there is security”. Yip the peeps are doing the best they can, supported by undercover police officers, CCTV camera’s, radio communication, to baby sit your little angel, who slurs abusive language, insults and sometimes attacking the security for playing your parental role.

The centre management and security will do everything in their power to investigate, eliminate, get rid of bad elements within the Malls and I have witnessed it first hand with arrests, banning people and monitoring hot spots.

I don’t understand you are happy to pay someone you trust to babysit your child at home, are you willing to pay security to look after you child at a Mall? No, it’s the Mall’s responsibility, yeah sure, thank about it!

See you at the Mall.

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.”

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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?

We have started the process of explaining to the kids that “Grandma & Gran dad is going on a big aeroplane to England” which means very little if you are 3 years old. How do you explain the concept to your nonverbal daughter with Autism? Simply stated the same way you would explain it to any other child of 13 years old. The difference is how much would she understand? How will she communicate it back, usually in behavioral differences.

It’s bizarre how life works. My parents live in Jozi and we see them twice a year. Mom and dad made their booking to come down to Cape Town for a couple of days arriving at 12:00 and Ken & Jen are leaving at 9:30. Exciting times for us hopefully absorb some of the blow of Julie’s folks leaving.

What’s gonna happen when they go back to Jozi?

If the UK allows my entry, we will be making our new home before my 40th in September, so at least something to look forward to, BUT leaving your 75plus parents behind in South Africa,  not nice. This visit might be the last time we spend time together before we leave, not sure if I will see them again with their age creeping up and their health not improving.

How do you explain…….goodbye!