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

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?

So, they visited for the last couple of day, like normal, however this time there’s was difference, they are fragile, frail & their health not making life easier. They live for their grandchildren managing to laugh & smile though all the aches & pains in playing with the kids. It saddens me to see them leave so vulnerable, back for Jozi, still living on the same small holding for the last 40 years.

What saddens me more is the fact that we might not see them again. We are planning to immigrate to the UK leaving in August and not sure if we will see them before leaving. How do look your mom & dad in the eyes to say goodbye when you know it’s highly probable that you won’t see them again?

“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!

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