Wednesday, March 30, 2011

Fart jokes...

I’m not sure how much Travis comprehends.

He doesn’t respond to his own name, or simple requests like “Come here, buddy”. But keywords like “Bath time!” and “Bottie!” and “Mickey Mouse Clubhouse!”... Now they get a response.

What’s incredible, though, is the universal hilarity of farts.

Last night the Lionheart and I were parked in front of his soapies a.k.a. the washing machine. I was feeding him some macaroni and bacon for din-dins, and he suddenly let rip with a thunderous fart. You know... the kind of flatulent exclamation point that can only be produced by a pair of moist bum cheeks snugly ensconced in an equally moist nappy.

This makes Travis erupt into giggles! Because even a small boy of very little comprehension knows that bum-trumpets are the funniest thing. Also, I make a big deal about waving my hand in front of his nose and going: “Phe-uw! Stin-ky one!” Which causes another wave of giggles...

Somehow, that Travis the Lionheart laughs at farts makes me feel warm inside. And not in a manner that may result in a small eruption of my own. Because it’s an accepted fact that moms do not not fart. Ever.

Friday, March 25, 2011

WTF Friday 8: Fat-bottomed boys

What the Fuck Friday is the most blissfully belligerent day of the week. It’s the one day the author of this blog does not delicately arch an eyebrow in distaste at some perceived stupidity. Instead, she tucks her skirt into her panties and jumps up and down in a giant puddle of mud in a most unladylike manner.

Fact: South Africa is the second fattest nation on the planet. It’s a good thing we’re in the southern hemisphere, opposite the United States of Humungous People. If Mother Nature hadn’t balanced out her fatties so neatly, planet Earth would have caught a dangerous speed wobble by now and we’d be spinning off into the galaxy like a tipsy belly-dancer.

So why don’t nappies come in bigger sizes?

Yup, this is one of those I’ll-pick-a-fight-first-before-you-can-get-your-teeth-into-me kind of rants. You know, like when your husband discovers your stash of “but I bought them on sale” outfits with the tags still on them that you thought you’d hidden so well... so before steams blows out his ears about budgets and end-of-the-month-Salticrax you whip the porn magazines out from under the spare room mattress and say, “And what the hell is THIS?”

I’m defensive and pissed because Travis the Lionheart is exploding out of his size 6 Pampers, which are the biggest nappies we can find in a supermarket. PS: if you can never find these giant-ass Pampers nappies in your store it’s because the Lionhearts got there first and bought out all the size 6s.

Yes, he’s three-and-a-half and he weighs somewhere just under 20kgs. If we are lucky, we might be able to potty train our special needs boytjie before he turns ten.

So I’m touchy because the time has finally come where I have to go into a specialist pharmacy like Dischem, and ask some gum-chewing store assistant where the adult diaper section is, and explore that horrible shelf for the first time. No reason I can’t have some fun, though. I intend to drag the shop assistant along and ask questions like: “Which of these adult nappies is more absorbent?” and “What is your most popular brand?”

And if Fortune really smiles her toothy grin at me, a representative from the blue-rinse brigade will be shopping for adult nappies shoulder-to-shoulder with me, and I can earn some community brownie points by spending quality time with a senior citizen, asking Old People questions like “How often do you change your diaper?” I mean, it’s not like we’re in the tampon aisle...

I’m not embarrassed that Travis the Lionheart needs special nappies. I’m sad. And a little angry... at the world, at the Big Guy Upstairs...

And why not direct some misplaced anger at the manufacturers of Pampers?

You’ve let me down big time here, Pampers. I’ve calculated that in Trav’s lifetime, I’ve dropped around R20 000 in your pocket, and that’s not counting extras like wetwipes! I’m a loyal fan, the first to complain that Huggies are leaky and the tags are scratchy. You’re my tried-and-tested brand.

So Pampers, how about you capitalise on the rampant childhood obesity in South Africa and do me a solid: let’s get a size 7 out on the shelves and help me postpone the unpleasantness of that dreaded speciality diaper aisle in Dischem for another couple of months?

Pretty please?

Wednesday, March 23, 2011

A different kind of white picket fence

Sometime soon after Travis turns 18, I need to win the Lotto or write a best-seller that turns the world upside down. Or perhaps my genius hubby will mastermind the perfect bank robbery.

It’s not because I want a Ferrari or a fancy house in one of those security villages. It’s because I need to quite literally BUILD a self-contained paradise for Travis where he will be safe, content, independent and fulfilled.

Here is my blueprint for Trav’s white picket fence:

First, we need to move to a small, friendly village where everybody’s nose is jammed up against your windows and they gossip about your giant broekies on the washing line. This is because we need the kind of community where everybody knows who Travis is, and what he’s all about.

I’d like to buy a plot of land big enough for a home for Morne and I, and any possible siblings our Lionheart still might have, and then we can custom-build a flat behind our home for Travis with a private entrance. I’m not talking some crappy studio apartment where the kitchen sink is next to the toilet. A proper home with a bedroom and a nice (very well waterproofed) bathroom and a TV room... and the big splurge: a sensory room and even an art studio, if our boy is that way inclined.

To my shame, I still toy with the idea of hiding cameras in his flat so that I can keep an eye on him without him feeling spied on. But to be honest, it leaves me a little repulsed.

It’s so important to me that Travis feels independent, but knows we are very close by to assist him. This whole flat will be accident-proofed. No sharp corners or slippery surfaces. All the counters and cupboards at the right height, just in case he doesn’t ever learn to walk and is somehow still physically limited no matter how much physiotherapy Travis grinds his way through during his childhood. There will be a big-screen TV to accommodate for Trav’s poor eyesight. And a nifty study with all the specialised computer equipment that will be relevant for Trav’s needs at the time. Also, all the fabrics like the couches and curtains and carpets will not trigger any of his sensory integration issues.

Getting expensive, huh?

I've got this sketched out to Xanadu proportions!

Next in my hopelessly optimistic pipedream, I would like to be able to send our young adult with special needs into the village cafe for bread and milk, and if he gets confused about coins or gets transfixed by a swirling Slush Puppy machine, the cafe owner has my mobile number taped to the cash register. If necessary, I’ll have a running tab at the grocery shop, or the local coffee shop or whatever establishment Travis should regularly pop into – so that if he gets the money wrong, I can cover the costs without embarrassing him.

People will pass him in the street and great him with a smile, even if he walks funny and he struggles with eye contact. I will win the entire village over onto Team Lionheart by making ridiculously huge donations to local schools, libraries and clinics. I’ll sponsor park benches! I’ll buy the mayor a new fracking car! Anything to make sure that nobody mumbles “retard” under their breath loud enough for my boy to hear as he goes about his business, however simpleton or odd it might seem.

Last night I was pondering if Travis will develop the motor skills to zip about our fictional village in a motorised golf cart. That would be awesome! (Obviously Travis will never drive a car.) If not, I will hire somebody to be his driver. I mean, sure... I could drive him around, but he’ll probably hate having to ask me all the time.

Yup, I’ll need to hit the jackpot, baby, to make this all come true.

Over the years a small handful of people have asked if it wouldn't be easier on everyone, including Travis, if we put him in a home. The answer is simple: abso-effing-lutely NOT.

Nothing worthwhile was ever achieved by taking the easy road.

Saturday, March 19, 2011

WTF... er, Saturday!

What the Fuck Saturday is the most blissfully belligerent day of just this week. It’s the one day the author of this blog does not delicately arch an eyebrow in distaste at some perceived stupidity. Instead, she says “Okay, so this is a little late... but hang onto your pantaloons folks, cause I’ve got something to bitch about.”


Fridays. They’re sneaky little buggers. One moment you’re eating sushi and watching Wipeout, the next you’re waking up at 2am with a niggling feeling that something’s amiss. Ah, there it is... a ‘Dear John’ letter on your bedside table next to the wet wipes and fantasy novels:

Dear Stacey

I stuck around as long as I possibly could, but watching you drool into your pillow just doesn’t do it for me. So I’m leaving you. We can try again next week.

Yours sincerely,
Friday

PS: you also forgot to feed the cat.

So here’s what I’ve been thinking all week: why do we spend SO MUCH time remarking on whether a baby more closely resembles the mother or the father?

Next to the whole: “Hi-how-are-you-I’m-fine-how-are-you?” empty social ritual, this really annoys me! There’s nothing wrong with casually remarking that Travis looks a helluva lot like me. No shit – I provided half of his DNA. What grates my tits is the vast amounts of minutes, even accumulative hours that have been dedicated to this debate these last three-and-a-half years.

I’m just as guilty of this, by the way...

It started when I brought the pictures back from his 3D scan. “Look at his nose! That’s definitely his father’s nose.” Even though ALL babies are born with round little button noses, regardless of parentage... When last did you see an infant with a hooked Roman Caesar schnoz? And I’m telling you Barbara Streisand wasn’t born with that whopper either.

Those first couple of weeks after a birth, as visitors sweep into your home for New Mommas In Pyjamas hour with ANOTHER teddy, it’s the first thing they’ll say when they see your squishy newborn for the first time, guaranteed: “Oh so-and-so looks just like her dad...”

Don’t you DARE mention that Aunty Ophelia says that so-and-so actually looks more like you. Then it becomes a competition that lasts for fracking years! Friends and relatives divide themselves along Team Looks Like Mom and Team Looks Like Dad, and with every goddam birthday party and social gathering you’ll have someone smugly saying: “See, so-and-so looks so much more like her father now. Didn’t I tell you that when she was born. Didn’t I?”

Aaaaargh!

Notice how I didn’t give that hypothetical baby a name, because frankly, it has stuff-all identity anyway. Apparently it’s just a reincarnation of one of its parents, with no personality and character of its own.

It’s driving me nuts! Who the hell cares? Why does it matter? And if it turns out that Travis looks a lot like me at that age – well, okay then. I agree. You win! What have we accomplished with all this mindless chit-chat over tea and biscuits and birthday cakes?

Anyone up for a lively discussion about the weather next?

So I’m putting a stop to this silliness.

I bumped into a bunch of gals hovering like fairy godmothers over a pram on Tuesday, and heard them wax lyrical about how much this three-month-old baby girl looks so much like her auntie (who is an actress on a local soapie, by the way).

“Actually,” I said as I peeked into pram... “I think that she looks just like... HERSELF!”

Yup, I got some five-star scowls as I swanned past this gaggle of frivolous chicks to the elevator, punched the button...

And then waited a flipping eternity for it to arrive on my floor!

I’m started a revolution. Who's with me?

Monday, March 14, 2011

Chocolate Mousse for Greedy Goose

One of the saddest realities of Travis AD (which stands for After Diagnosis) is that he’ll probably never share my love of reading. Before he was born, I bought him loads of bright, colourful books in anticipation of nurturing that little seed of literary appreciation I believe is within everyone.

I mean, come on... books are a magic carpet ride of the imagination! My face turns red and steam comes out of my ears when people say, “The last time I finished a book was my Grade 5 set-work, something by Shakespeare”.

While I was still pregnant, I bought the Lionheart a gold-edged tome of classic fairytales that cost 300 bucks. And a fun ‘getting to know the human body’ encyclopaedia from an Exclusive Books warehouse sale. I got him The Hobbit and The Tales of Beatle the Bard. I gifted him with my original 1970s Winnie the Pooh which is my greatest treasure. A dash of fantasy, a sprinkle of knowledge, a huge dollop of the classics... the kind of page-turners I enjoyed as a budding bookworm.

When he was eight weeks old I’d kneel next to Trav’s cot and read to him from the first Harry Potter novel. Even then, Travis hated it. My over-animated voice as I did all the characters; breathed in the right places – it annoyed him. “Shut up, Mom! I’m trying to sleep here.”

I am persistent though.

After he was diagnosed with a brain malformation, and despite his obvious intellectual challenges, we’d sit side-by-side on his bedroom carpet with ‘touch and feel’ books. I’d encourage him to use his fingertips to explore the textures. (On a side note, those books are brilliant for children with sensory integration problems like our Lionheart.)

Together we’d turn the thick cardboard pages. I’d do a sing-song “Tu-u-urn the page, tu-u-urn the page...” which works so well when I’m trying to teach Travis a new skill. And he does, he turns the pages! From right to left, perfectly. He does it because I have ‘programmed’ him to, drilled that repetitive action into him... but he doesn’t really get that we are READING.

I trace the slow rhythm of my words with my finger in a book – which usually results in my hand being smacked away. He’s not interested in studying the pictures either.

For Travis, reading remains largely a tactile experience. He adores paging through the teetering piles of children’s books I still bring home from the second-hand bookstore around the corner. He runs the palms of his hands across the pages, luxuriating in their smoothness. He likes to hold a thick novel upside-down by the spine and flick the pages with his fingertips. Thank goodness he doesn’t chew the covers anymore!

Try as I might these last three years, I can’t get him to make the connection, that the black squiggles = words = story = escape into a fairytale of possibilities! Where you aren’t limited by your disabilities! Where you are free to be whoever you want within the vast landscape of your imagination! Travis the dragon-slayer. Travis the detective. Travis the boy wizard.

So we stick at it. Today we’ve had a go again at Chocolate Mousse for Greedy Goose because the Lionheart particularly likes how silky the lime green inside cover of that one is.

Friday, March 11, 2011

WTF Friday 7: Travis is not Rain Man

What the Fuck Friday is the most blissfully belligerent day of the week. It’s the one day the author of this blog does not delicately arch an eyebrow in distaste at some perceived stupidity. Instead, she rolls her eyes at the heavens in an exaggerated manner and asks: “Oh Lord, give me patience...”

I cannot tell you how often, after I’ve explained that Travis is autistic, it’s followed by an exclamation of: “OMG! He must be, like, a genius or something!”

At this point the Lionheart is usually drooling a little while spinning the wheels of a toy car. In other words, not looking very much like a genius.

You know how after Steven Spielberg made Jaws, ever since the Great White shark has been branded an indiscriminate killer of swimmers, divers and drunken teens on spring break holidays? Now, when they’re not being turned into puppy dogs of their former selves by the shark cage diving tour operators in the Cape, they’re being hunted into extinction to make shark fin soup.

I blame Rain Man.

If you were born after 1988 you probably have no idea what I’m referring to so a quick recap: It's a rollicking tale that stars Dustin Hoffman as an autistic savant with a gift for card-reading.

Even though it’s based on a true story, it has forever linked the words “autism” and “savant”.

Just like only one-in-ten Great White sharks has ever even encountered a human, never much snacked on one, less than one-in-ten children with autism are savants. They write symphonies, can recite all the lines of Star Trek, memorise the schedules of the London Underground, paint like Michelangelo... Anything to do with memory, music and art. Just those three areas.

The other nine-out-of-ten are like Travis the Lionheart, who is insanely obsessed with anything that spins, but is definitely not Einstein.

Also, only 50% of savants have autism.

I’m writing about the Huge Savant Misconception today to remind you that it’s the last day for registering for the Walk for Autism event that’s happening on 26 March around Zoo Lake, Johannesburg. It only costs R50 to enter, plus you can order a wicked cool “I’m not naughty, I’m autistic!” T-shirt as well. Or you could just wear something lime green.

With a child with autism being born EVERY HOUR, the chances are excellent that you and your children (who are called neurotypicals or NTs by the autism community - fun fact) will at some point encounter one. It could be in the grocery store or in your kid’s class, as South Africa does not have nearly enough facilities to accommodate all of these children in ‘special’ schools.

Come and walk with the Lionhearts around Zoo Lake! No doubt it will be the biggest gathering of real savants the city has ever seen.

Wednesday, March 9, 2011

Smile for the camera!

They say a picture tells a thousand words... but I can do it in much less.

Travis and I have a photoshoot with Living & Loving magazine this Saturday morning, and I’m doing my best to be optimistic... but Lionheart fans know that this kid does not do well in these kinds of Situations.

As Morne is working on Saturday, I am also facing this Situation flying solo. Woe is me. Not only am I stressed that my ass – which is still the exact same size as the day Travis was born – will look like the Death Star looming threatening in the background (complete with ominous music), but I’m stressed that an overwhelmed Lionheart will not be posing for any photographs where he looks like a cuddly Ewok.

My email to the stylist went a little like this:

“Um, Travis is three-and-a-half. As he has all manner of special needs he can’t walk or talk and won’t respond to any instructions like ‘smile for the camera’. Also, being in a strange environment, he’ll have a meltdown of epic proportions. He’ll probably save this sensory-overload-induced meltdown for when I’m having hair and make-up done, or when we’re trying to dress him in a cute outfit. Plus, he has googlie eyes (read: one eye that wanders pretty bad). Also, be sure to get some size 6-7 pants as his belly is kind of... how can I put this delicately... rotund.”

In truth I only touched on half of this... but that’s the full scope of my fears.

On the other hand, I can count the number of photographs of Travis the Lionheart and I together on one hand – none of them flattering. I’d love to have a professional capture just one perfect moment in time where my first-born son and I are smiling together, our hair is brushed and our double chins have been delicately Photoshopped out of existence.

Is that too much to ask?

Writing a blog about the hilarity and horrors of raising a toddler who is mentally and physically disabled... you’re still relatively safe behind your computer screen.

But I want Travis the Lionheart to be more than his blog. I want his story to touch people’s lives, whether it tickles your funny bones or it’s a bitch-slap from reality. That means sucking it up, getting out of our comfort zones, and hopefully not giving our photographer on Saturday a nervous breakdown.

Say it with us... CHEESE!

Friday, March 4, 2011

WTF Friday: Issue 6

What the Fuck Friday is the most blissfully belligerent day of the week. It’s the one day the author of this blog does not delicately arch an eyebrow in distaste at some perceived stupidity. Instead, she pulls a can of neon print spraypaint out of her purse and writes ‘Tart!’ on your garage door.

Katie Price aka Jordan is a complete slapper.

Ordinarily the antics of some orange-faced, blowfish-lipped tartlet wouldn’t bother me. But unfortunately this woman and I have something in common – both of our sons have Septo Optic Dysplasia. In fact, when they run an article or documentary on celebrity mums raising children with special needs, Katie Price is always listed first.

Not only is this slag the poster girl for moms raising children just like Travis the Lionheart... but she’s a poster girl for all parents of special needs, if E! News is anything to go by.

Look, most of us have been there. We drank too much, flashed our undies and stumbled out of nightclubs. I certainly did my fair share of that and more... but when Travis was born, a little switch flipped inside me. Suddenly waking up hung-over and blotch-faced wasn’t an amusing story to regale the girls with on Monday mornings anymore.

Parenting makes you pull up your socks.

Raising a special needs kid, you not only have to produce a something-nearing-normal child with not much to go on, but you also become ‘Miss Special Needs’. You’re an (often bewildered an unwilling) foreign diplomat representing your country – Differentasia – in your community. You do fundraisers, you raise awareness, you have the responsibility to show everyone that our kids are not freaks or broken or ‘retards’.

Katie Price makes me angry. She is the opposite of Living Lionheart.

Even though studies still can’t uncover why Septo Optic Dysplasia happens, people look at her and say: “No surprises that she gave birth to a mentally challenged child. Imagine all the drugs, booze and STDs!”



She undoes all the hard work I’ve put into helping Travis the Lionheart’s story be a message of hope.

While she’s out at night throwing herself at men in night clubs, pole-dancing in fanny pelmets, drunkenly mincing down red carpets, and being scraped up with a shovel and dumped back into her limo at night... her eight-year-old special needs son Harvey is at home, with his half-siblings, and a nanny.

That’s right, Katie. I’m judging you.