Tuesday, August 31, 2010

The annual Lionheart birthday debrief sessions

After returning from the birthday trenches, that rumbling battlefront where boys become, well, a year older, and parents throw credit cards like hand grenades in desperate self-defence – it’s considered good strategy to retire to the war room for a debrief (and a Savannah).

On the Battle of the Washing Machine Cake

1) It’s possible to spend R430 at the speciality bake shop on plastic icing, food colouring and fancy tins, another R215 on ingredients to make a giant carrot cake shaped like a washing machine with enough cream cheese icing to plaster an RDP house - and still end up having to make an emergency sponge cake with cheap vanilla frosting the morning of the party.

2) It is not possible to bake a giant carrot cake in a deep cake tin. Even after 2 hours, you’ll be stuck with a large brick of half-baked batter that is crusty on the outside and raw on the inside: which is a rather good description of how the baker is feeling at this point.

3) The quality of your kid’s birthday cake – even if you made a special effort to bake it yourself – is not a reflection on what type of parent you are, special needs mom or no.

4) That said, it is perfectly okay to cry yourself to sleep the night before your Lionheart’s birthday over the %#@*! cake and get up early the next morning to hurl chunks of half-baked carrot moosh dramatically into the dustbin before starting again.

5) It’s incredibly hard to work with plastic icing. Once it’s shaped, it stretches like the elastic dude from Fantastic Four when you pick it up off the cutting board.

6) The Cake Boss show on the Discovery channel makes baking fantastical confectionary look easier than it is.

7) It’s also very hard to take blue food colouring and a paint brush, and sculpt icing into tumbling water and soap suds like you’ll see inside a washing machine.

8) And lastly, no one wrapped up the Battle of the Washing Machine Cake better than my dear friend Nicole, who remarked when seeing it for the first time: “Is that a toilet?”

Saturday, August 28, 2010

Three cheers for the birthday boy

To the littlest Lionheart: three years ago today, in that cold operating room, they hoisted all 2.9kg of you wriggling up in the air like a fishing trophy and you roared at the indignity of it!

I remember the first time I saw your face; when the universe stopped hurtling forward in time for that one perfect moment.

Happy birthday, Travis!

Wednesday, August 25, 2010

The Lionheart's first kiss...

I can still remember my first kiss...

It was 1994, the first democratic elections had just taken place, and the families in my very white middle-class neighbourhood finally took can-openers to their stockpiles of baked beans and tinned spaghetti they’d purchased in bulk – just in case the ‘Africans’ turned violent.


Having recently turned 14, I was more interested in the end-of-year disco my all-girls school was invited to at the all-boys school down the road (I attended Potch Girls High). For weeks I’d practised snogging my arm in preparation for my first kiss with Bruce Haralambos, who’d sent me love letters by bush post and filled my dreams with sighing, flutters of the heart in soft focus.


We kissed to a dance remix of California Dreaming by the Mamas and the Papas, and I still remember the roar of laughter from his friends when I pulled away in horror as his tongue touched mine. Not my finest moment.


When my husband kissed me for the first time, I think our instant chemistry caused the Earth’s axis to tilt a little more to the left... rocks my world, that man of mine.


But it is the kiss I got from Travis the Lionheart that got my attention, just last week.

Our first, proper Mom-and-Son kiss...


Now, I kiss Travis all the time! In fact, we practically French kiss, because Travis hasn’t got the hang of pursing his lips together and making a ‘kissy’ mouth. He can’t blow out a candle or suck through a straw either.


Sounds gross, but I’m not the only special needs mom who occasionally gets tongued by her toddler. A couple of us moms were having a good giggle about it in the Wiggles & Squiggles kitchen on Saturday, when I told them the story of my first real kiss from Travis.


I scooped Travis up off the floor when I got home on Friday and planted a big smackeroo on his open mouth as he giggled with mischief.


Then his face took on an expression of serious concentration. Brows furrowed, he looked down the end of his nose and I watched in amazement as he managed to press his two lips together. It took a few tries, but once he was confident he pursed out his closed lips and mashed his first kissy mouth into mine. I had tears in my eyes.


After three years, my son just kissed me for the first time.


Love you, Lionheart.

Friday, August 20, 2010

Watch out, this Lionheart has teeth...

When Travis the Lionheart is not roughing up Labradors or practising his dolphin, he’ll have something chewy clamped between his baby teeth. This could be a snack; it could be a mom’s slacks. It could taste quite bland – it could be mom’s hand!


Yup, Travis bites.


Travis likes to bite people’s toes. This is hilarious to watch when we have visitors wearing open-toed shoes. He likes to bite pants. Tracksuit pants, denim, and chinos, whatever – he doesn’t discriminate. He takes a little fold of material between his teeth and tugs, tugs, tugs. T-shirts too, on occasion...


And when he gets angry, Travis will bite down on his left hand with such ferocity that it bleeds!


This isn’t one of those funny, ha ha posts.


His hand is covered in the scars left by puncture marks made by his teeth – his vampire-like pointed canines in particular. He’ll look up with tears of frustration in his eyes, his teeth painted in blood.


This is what it’s like when you cannot speak. Can’t express yourself using words, or even actions because your body won’t do what you want it to do. Did you know that Travis can’t even point his fingers? He doesn’t have the fine motor skills to do it.


Travis can’t tell me that he’s hungry. He can’t say: “Mom, please pass me the toy on the top shelf” or “There’s a label in my shorts that’s scratching the hell out of me” or “I don’t feel good, my throat hurts.”
Travis’s rage will make you quake in your shoes! He has a high-pitched shriek that goes on and on, like an air siren that wails in the night as bombs rain down on your home.


For the last couple of weeks, Trav’s been biting me and pinching me so that my own hands are covered in bruises and scabs. This happens when I can’t understand what he wants. He’ll take my hand and place it somewhere, like the bowl I’m feeding him from, and I’ll ask “Do you want some more?” and show him the Makaton hand sign for ‘more’. He’ll shake his head violently, and place my hand back on the bowl. “Finished?” I ask, showing him the Makaton sign for ‘finished’. More shaking of the head... and then he starts getting angry, and one of us will be bitten.


My dear boy, how I wish we could understand each other better.


Don’t get me wrong. My husband Morne and I speak fluent Travis. It’s a language make up of tiny facial expressions and hand movements, squeaks and gurgles with many nuances. We’ve recognised the determined way he’ll slide his bum across the floor when he has a plan, the way he’ll watch Soapy the Labrador out of the corner of his eye when he’s thinking of ambushing her.


The ability to speak ‘Travis’ has knitted our small family even tighter together, like that secret language or alphabet you made up with your best friend when you were kids.


Like all this family’s eccentricities, I like to think we’re the better for it - if slightly chewed up.

Wednesday, August 18, 2010

What will Trav be when he grows up?

video

Perhaps inspired by the ceiling fan, Travis the Lionheart is exploring a new spinning-related activity...

Breakdancing.

When your little Lionheart is as obsessed with spinning as ours is, you start to imagine future occupations that'll complement his talents. Here's our list of the top 10 Trav jobs:

1. Watch-maker-slash-clock-repairman (all those spinning cogs)
2. Ceiling fan installation
3. Spinning instructor with buns of steel
4. 'Big Wheel' operator at the fun park
5. Motor mechanic
6. Run his own wind-turbine business - it's the energy of the future!
7. Drive the zambonie machine at the ice rink, and go round and round and round... 
8. Buy his own cotton candy machine
9. Work at NASA - spinning rocket engines, baby
10. And now, breakdancer!

Saturday, August 14, 2010

Oh snap! That kid in the trolley is... odd

Saturday is shopping day.

For most moms, controlling your kids in a frenzied mall can be a little like a rugby match, especially if you have more than one rug rat. There’s a mad dash for the goal line (parking spots, shortest queues, and sneaking past the sweet aisle) tackling, scrumming and occasionally a player gets sent off to the ‘sin bin’.

Shopping can be equally trying (yes, I’m punning) for a Lionheart. Travis used to have an irrational fear of shopping trolleys. Well, perhaps not too irrational... after all, it’s a giant metal contraption that looms and rattles threateningly, lurking in every aisle, waiting to mow down small boys.

Still, after much patience and gentle encouragement, Trav now happily parks off in those fold-out kiddie seats of trolleys. He especially loves the ones with two shopping baskets. He sits in the top basket and gets pushed about like he’s in a go-kart, and Mom fills the bottom basket with groceries. The perimeter of the trolley is now his demarcated ‘safe zone’ when we’re shopping.

The biggest challenge is always leaving the supermarket.

At some point, some friendly check-out girl, bag packer, security guard or sometimes even a car guard is going to try ‘engage’ Travis. Hell, he’s one adorable little whipper-snapper in his shopping basket go-kart! If I wasn’t his mom, I’d still want to give him the old ‘kootchie-kootchie-koo’!

Thing is, Travis has a number of autistic traits – the most noticeable being poor eye contact. So we’ll have some member of my 'tribal community' saying, “Hey, little guy!” and “What have you got there?” and “Hello, buddy. Are you driving that trolley?”

Silence. Very awkward silence.

Trav doesn’t acknowledge that he’s heard these pleasantries. He won’t even cock his head in the general direction of their voices. He won’t make eye contact. His facial expression won’t change.

This sometimes leaves me, the mom, squirming in embarrassment. After all, I’m supposed to teach my kid manners, right? I know that this is normal; that no eye contact and trouble socialising is a key autistic trait – but my tribal community doesn’t know that.

Now, a special needs parent understands that you don’t just blurt out to strangers: “Sorry, my kid has a brain malformation. He’s autistic. He’s not being rude.” That would embarrass them.

So I usually explain it away. “He’s just shy.”

This usually works, until the finger-snapping began. I can always pick out a finger-snapper. A finger-snapper starts by frowning and says, “Uh, exactly how old is your son?” I reply politely that Travis is about to turn three years old. More frowning. “Hey little guy,” the finger snapper again tries to get Travis to make eye contact with no luck. Then this slug of a human being will snap his fingers in front of Trav’s face – coming into my Lionheart’s ‘safe zone’ and unleashing the screaming, now-completely-freaked-out toddler that makes shopping a nightmare.

I have no mercy with finger snappers. In fact, I have so blatantly trodden over their embarrassed feelings explaining that my toddler is brain-damaged (not an accurate term, but I try use words they’ll understand), that I’ve considered printing a special range of T-shirts for Travis to wear when we’re out, to deter these insensitive morons from approaching us – assuming they’re literate, of course.

Living Lionheart T-shirts: Top 5 slogans

1. You’re not ugly – I’m autistic!

2. Let’s see you snap your fingers without a thumb!

3. Warning – basilisk* disguised as small boy

4. Is that weirdo still looking at me?

5. Eye contact. Fail.



* A basilisk is a mythical serpent-like creature. Legend has it that when you look a basilisk in the eye, you immediately drop dead.

Sunday, August 8, 2010

A celebration of 'googlie eyes'

Last weekend Trav the Lionheart was working his hyper-cute mojo and I whipped out the digital camera to capture his Kodak moment. (He was demolishing a Lego castle with great gusto!) I took about 25 photographs with my iPhone, and then sat down on the couch to narrow the images down to that one excellent shot.

The lighting was bad in a few of them... I deleted those. Another 10 or so were blurred because Trav was waving his hands about like an air traffic controller who'd had too much caffeine. These shots were also dragged to my Dustbin icon. I was left with five awesome photos of Travis smiling into the camera, Lego blocks strewn about him as he sat triumphant in his rubble.

Problem was, Trav's eyes were distinctly 'googlie' in these photos. I sighed, and erased those five photos too. You see, Travis has a wandering eye (which is amazingly correcting itself as he gets older). I'm so used to snapping the same Travis moment over and over to get one photo where his eyes are perfectly aligned that it's become the norm.

This is a challenge that most ruggle parents (parents of regular kids, that is) don't have to deal with. It's all "Tiffany, get your finger out your nose; we're taking a photo" and "Mark, stop sticking your tongue out in the Christmas card family photo! We're paying 500 bucks for studio time!"

Err...Travis, make your eyes straight?
"Hold that pose, kiddo; Dad's getting the spirit level!"
Ridiculous, I know.

It was only when my blog went live that it struck me how very hypocritical it is to promote the rights of special needs children and their families, and at the same time erase every photograph where Travis doesn't look the very picture of ruggleness.

For shame. An immediate course of corrective action is needed.

Our perfect Kodak moments should be less about the 'perfect' and more about the 'moments'.  So we're sharing Trav's happy snap photographs from here on out, googlie eyes or not!

After all, Living Lionheart is about celebrating differences.
Take that spirit level and shove it.

Friday, August 6, 2010

Love me, love my washing machine!

video

For the last year, Trav has been romancing the washing machine. It combines two of his favourite things... spinning, and the thrum and vibration of an electrical product (also in this category: Mom's hairdryer - you thought I was going to write something else, I bet - and the vacuum cleaner).

So this year - and a little inspired by the Cake Boss on the Discovery channel - we're making him a washing machine bithday cake! I can't wait to model teeny little underpants and socks out of marzipan!

Watch this space for photos!

Wednesday, August 4, 2010

A life less ordinary: Trav’s daily routine

Our friends and family often exclaim “I can’t imagine what it must be like for you guys!” when contemplating the idea of raising a Lionheart (a child with special needs). The truth is that we have no idea what it’s like to raise a ‘ruggle’. That is, a regular kid.


The importance of a routine, however, is universally understood by all parents. For a child with special needs, it’s even more vital – because these kiddos like to know what is coming next. It makes them feel in charge of their environment and feelings; something that is hard to master when you’re mentally, emotionally and physically challenged.

So here is Trav’s routine:

MORNING

6am – The Lionheart awakes and rolls out of bed! Travis can’t walk so his bed is a mattress on the floor. This gives him easy access to his toys, which we keep at ground level, and he can roll onto his bed with he needs a nap later in the day.

6.30am – Trav makes ‘loud noises’ until Mom or Dad brings him a bottle. It’s a sugar-formula-Milo combination, or as we call it... a Power Bottie!

7.30am – Lately Travis turns down his regular bowl of Weetbix for breakfast, so we skip ahead to dressing him, putting on his foot splint and orthopaedic shoes, and giving him his seizure meds.

7.45am – Trav and Mom hit the road with a nursery rhymes CD in the car; the same songs every day. I’m hoping the repetition will help Trav remember some of the tunes, even if he can’t speak or sing. He giggles all the way to his special needs school, Wiggles & Squiggles, while I chant the names of everyone in his class and sing “School, school, school – we love school”.

8am – I drop off the little guy in his classroom, where he is immediately scooped up by Thenji, who is his minder. She asks me to brief her on what kind of evening and morning he’s had, what he’s eaten and anything else that will help her work with him during school hours. There are six children in the Nursery Class, one teacher and three minders. This is a 6:4 ratio, which is incredible!

8am to 12.15 – School time! This is the favourite part of Trav’s day. They sing songs, paint, draw, bake, have snack time, and work on their Makaton (which is a special language of hand signs and picture cards). He also has specialised music classes, occupational therapy, physical therapy and a sensory room on site.

AFTERNOON

12.15pm – Dad collects Travis from school, and Teacher Sue briefs Dad on how his day was, how he coped with new tasks, improvements, if he ate... Few ruggle parents get this kind of feedback every day. Travis has an Independent Education Plan (IEP) that we formulated together with the school and his therapists. Obviously he cannot follow a regular curriculum, so we set goals and monitor his progress, and also, our expectations. We have to be realistic about what he can and cannot do.

1pm – Trav usually eats two tubs of full-cream yoghurt at school, so his nanny Irene makes him some kind of snack, usually viennas and tomato sauce which he eats by hand, and a Power Bottie. At least once a month, during this time, Trav has a check-up with one of his specialists. He has a neurologist, an endocrinologist (hormone specialist), an ophthalmologist (eye specialist) and lately, a dietician. He sees them each once every three or six months.

1pm to 4pm – Play time! For our little Lionheart, playtime includes watching the washing machine spin, kicking doors (he loves when it they bounce back), tugging on curtains, chasing Soapy the Labrador, and exploring his boxes of toys. Trav doesn’t ‘play’ with toys; he examines them, and usually chews on them. We’re trying to encourage him to watch Mickey Mouse Clubhouse and Handy Manny, but Travis doesn’t watch TV – at all! Imagine that...

4pm – Mom comes home from work, yippee! My office lets me work from 9am to 3pm, which gives me quality time to spend with the Trav. That’s right; it takes me a whole hour to get home. Traffic!

EVENING

6pm – We sing the bath time song, and Travis claps his hands with excitement. Travis spends one whole hour in the bath everyday; it is one of the few environments where he is not challenged physically. He splashes so much we have to throw a towel down on the floor!

7pm – Out of the bath and into the PJs! Now comes the hardest part of the day: supper time. Lately, Travis will only eat yoghurt and viennas, so for the last two evenings I have taken an empty yoghurt tub and filled it with butternut soup. Last night I was even able to add some mashed pumpkin we had for dinner into the soup. Usually Trav rejects up to four different meals we prepare for him for supper, and shakes his head violently when the spoon comes near. It’s hard to stay calm about it when his weight is dropping off again (he’s a three-year-old who weighs 12kgs). Mom and Dad take turns with the supper fiasco so that we don’t get too frustrated.

7.30pm – Another dose of seizure meds and one more Power Bottie!

8pm – Time for bed. Sometimes Trav falls asleep right away, and other times he’s up until 11pm playing... or even 1am on occasion!