So, what goes through you mind when you hear a panicking voice from a staff member, confirming that there are a snake at the school for learners with Autism. Well pretty much anything, including where the nearest axe or snake catcher.
Arriving at the school, with eyes absorbing like the best designed scanner, I found “THE SNAKE”
Calling Blaauwberg Conservation with a detailed description which will make any advocate proud, I rambled of what I saw 3 meters away from me.
Only to determine the nature of the beast. I’m faced with a Ramphotyphlops braminus which is nothing more than a lizard without legs or a earth worm on steroids. Oh and did I mention it was about 150mm long, as blind as my grand mother.
Now we have our own resident snake at the office, however I suspect we in for a hectic bill after all the sugar water at the school.
Imagine being about 5 km’s away from your family, not being able to enjoy Fathers Day with them, by choice. Not because you don’t love them because you choose to make a difference to people with Autism. It was so awesome to get a Sunday family visit and extremely difficult to say goodbye especially to Jamie only 18 months old at that stage.
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?
I’m not one who lives and work in the past, however sometimes we have to reflect on the past to understand how it will form our future.
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.
I need to employ a qualified Principal for Growth Through Knowledge School, a small school situated in Table View specialising in learners with Autism Spectrum Disorder.
The candidate should be familiar with the field of Autism, the education Curriculum, IEP’s and has the administration, professionalism and leadership ability required in a School. The ideal person should understand how unique/individual Autism are presented in each child, with creative, open-minded & holistic practical implementation in using a variety of therapies and educational teaching.
The Principal will be working together with a team of Teachers and the CEO of Autism Western Cape.
This is a full time position. Starting date 1st July 2010. Candidates who have occupied a leadership position in a school, and has a Teacher qualification are invited to submit by email a CV, proof of qualifications and 3 recent references.
What do you assume when you see a white male growing a full beard in South Africa? Is it maybe a new fashion statement for winter or is it in solidarity of the murdered Eugene Terreblanche?
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.
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.”
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?
Tomorrow I have to drop of Ken & Jen (Julie’s parents) going back to the UK after living in South Africa for the last 28 years. When seeing how their whole history packet in a couple of boxes, listing to your voice echoing through the empty house , you realise your only real support structure is leaving. I took Tyson to the Vet on Saturday to send him to doggy heaven after 13 years, we had an awesome last beer & braai at our place yesterday, pretty much an emotional roller coaster all round. I am also saying goodbye to one of my best friends, watching sport together, share the love of beer, aways being there for each other, always.
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.
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
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.
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