Tuesday, 30 November 2010

3am in the garden of good and evil

The Lionheart s-t-r-e-t-c-h-e-s!

“Aaah... what a delicious night’s sleep. I dreamed of washing machines and Father Christmas. You know what would go down a treat right now? A bottle and maybe a fresh nappy. What’s taking Mom so long with that bottle anyways? Perhaps I should make some loud noises to alert her that it’s time to get up and get ready for work. Hello? HELLO!! Thirsty Lionheart awake here with a well-marinated bottom!”

Except it is 2.50am right now and Mom desperately needs her sleep.

Yesterday when this happened, it was 3.30am, and Mom needed that extra sleep too.

And the night before it was 3.15am when Travis the Lionheart got an early start on his day.

This special needs mother is not of amiable temperament any time after midnight. It’s pumpkin time. Even smashing pumpkins time. She will huff, and she will puff, and she will trundle bleary-eyed right over any wise-ass toddlers who are bum-sliding about the house in the dark of the night.

“Travis, buddy, you really are going to get it all this morning!” she threatens, pleased that she’s retained some sense of humour... before kicking over a diabolically loud musical toy and waking the whole of Cedarwood complex up. Townhouse living: for the win.

Soapy the Labrador takes this as her cue to go out for a pre-dawn whizz on the dewy grass. “Where the frack are the back door keys?” Mom gives up fumbling in the soothing dark and flicks on the kitchen light with exasperation

“My EYES!”

“Oh hello, husband, I didn’t see you there.”

Great. The entire household is up. Travis is waiting expectantly innocently triumphantly in front of the TV for his regular does of Mickey Mouse Clubhouse. I suppose the sun is rising in someone’s time zone at this very moment.

Travis: 3
Parents: 0

Friday, 26 November 2010

His Royal Lionheart's go-kart

Travis the Lionheart at the meat market yesterday.
We usually ditch the pram for one of these double-trolleys.
Of course, we only get to use the bottom half, hee hee.

Thursday, 25 November 2010

The crying game

Just a quickie... I was miraculously early dropping Travis off at Wiggles & Squiggles this morning, so I spent five minutes chilling with the Lionheart on the play mat before the morning circle.

There's a new girl in the Nursery class - her name is Katelyn. This dear little thing cries a bit in the mornings, and today, as Katelyn was shedding a few tears, Laelah started bawling. So Norah decided to chip in with a few sobs of her own. Not to be upstaged by the girls, Travis thought that he would put in his own Oscar-winning performance for best drama. Four toddlers all in tears at once!

It's terrible, I know, but I struggled to hold in my laughter.
I think a few chuckles may have escaped at this symphony of tears.


Wednesday, 24 November 2010

What's in a stim?

Before I leap into my blog topic, let me share with you how adorable Travis the Lionheart has been the last few days.
  • On Sunday night, during his regular hour-long flooding of the bathroom, Travis managed to launch no less than four cars into the toilet bowl from the bath tub. It’s the NBA of bathroom sports, yup, the Lionheart Super Bowl.
  • On Monday night, while Morne and I wolfed down a bowl of pasta in front of the telly, Travis rather pointedly bum-slides over to his feeding chair at the dining room table, shows me ‘Up’ and then sits there on his throne, as if to say: “Peasants. Ye have no table manners!”
  • Yesterday Travis discovered that he can open the freezer door. Now we need to add one of those yellow plastic ‘Caution: Wet Floor’ signs to the shopping list as the Lionheart kindly defrosts our freezer for us on a regular basis.
I could just eat this kiddiewinkle up with a spoon! And now, onto our regular broadcasting...

DEF: Stimming
A repetitive body movement that stimulates one or more of the five senses. Self-stimulatory behaviours are not only restricted to the autism community (think about all the knuckle-cracking, hair-twirling, lip-chewing you see during a Death by PowerPoint), but it is a key autistic trait.

The Lionheart’s obsession with spinning is a self-stimulatory behaviour; he still watches his ‘soapies’ every afternoon aka the 9-minute spin-cycle on the washing machine.

Other stims topping the Trav charts this season include:
  • Hand flapping and toe-twirling... Travis can flap both hands and make circles with both ankles – all at the same time. He does this when he’s excited. It has to be seen to be believed. I call them his ‘jazz hands’.
  • Travis rolls side-to-side frantically while on the bed. In our family we call this ‘wa-wa-ing’, because Travis’s uncle Phil did this as a child, even in his sleep, while going “Wa wa. Wa, wa.”
  • Another stim that just will NOT go away is lip-flicking. Hard to explain this one. Travis takes a toy and flicks it in and out of his mouth, particularly so that it catches his top lip, over and over. Copious amounts of drool ensue, soaking his T-shirt.
  • In October, while we were on holiday in Umhlanga, the hand-clapping started. Travis can give no-one in particular a round of applause for 30 minutes. He just can’t stop himself.
But it’s the Lionheart’s newest stim that is really testing me.

By now, I’ve gotten used to the stares in the shopping aisles. Trav’s googlie eyes are a dead giveaway that “there’s something odd about that kid”. Plus, he’s usually talking dolphin to himself as we cruise for bread and milk; not very subtle. I’m over it. In fact, I even boldly look that 92-year-old Jewish granny in the eyes that’s having trouble not staring, and try Jedi mind-bend her into asking me what’s wrong with my toddler. I practice this short, polite little speech all the time – when will I get the chance to finally try it out? Ask me, ask me!

Now Travis has started slapping himself in the face. Hard. Over and over.

To be more accurate, he’s actually smacking his mouth.

You know that scene in Fight Club where Edward Norton beats the crap out of himself? It’s horrific to watch: he doesn’t hold back, hey.

Neither does Travis.

For the record: you discourage stimming behaviour by distracting the kid from what he’s doing when he starts up, which is our approach with the Lionheart. However, when you’re queuing in Woolworths and your son is beating his face in, gently saying: “No honey... Oh, look – Tropical Fruit Gums, your favourite” does not win you any Great Parenting smiles of approval from your fellow shoppers.

One more reason Travis needs a sibling. They can beat each other up instead. No one objects to that in the shops.

I hope this new stim stops soon.

Thursday, 18 November 2010

Just because he’s my brother, doesn’t mean he ain’t heavy

Once we’d recovered enough from the shock of discovering that our first-born is a Lionheart (a kid with special needs), Morne and I spent many evenings discussing the possibility of having another child.

There were many people, some close family members and other peeps who don’t know us from a bar of soap, who said we should have another baby now, now, NOW when Travis was diagnosed. When you fall off a horse, get straight back up mentality. As if birthing a (I gag on these words) ‘normal’ and ‘perfect’ child could undo some of the heartache of first little ‘boo-boo’.

Thing is, my boo-boo has a name: Travis the Lionheart! And if science announced that they’d invented a time machine and anyone could go on a ride, the conception of my Lionheart is not something I’d wish to undo. In the spirit of honesty, I didn’t always feel this way – any special needs parent who won’t admit having regrets is in serious denial.

On the positive side: You not only learn to live with your ‘burdens’, you learn to find joy in them too.

While I’m on the subject of other people’s opinions, I’ve also been told very diplomatically that it’s best I produce another kid soonest, lest my husband trade me in for a wifey whose buns do not fail to rise properly in her oven.

Lastly, there are also the folks who look on with horror when we announce that we might gift the Lionheart with a sibling some day. Many of these people are special needs parents themselves who have been badly scarred by their experience. Almost all the rest are the judgemental childless type.

It’s not an easy decision. We decided to wait until Travis settled into his special needs school, which he has. We’d also like for him to be walking, although we’re realistic. Travis could take one giant leap for Lionheart-kind next month, or only when he’s 10 years old. Who knows?

  • The Lionheart will have some company, a sibling to learn from and socialise with.
  • As a couple, we’ll overcome our fear of not being able to conceive a ruggle. Are we broken, cursed, or that horrible compliment ‘just special people’?
  • The sibling will grow up to be a human being of extraordinary patience and compassion.
  • Trav’s brother or sister will always resent us for saddling him/her with a Lionheart for a sibling. The playground is a cruel place when you are ‘different’.
  • Travis will think that we love his sibling more because he or she is ‘normal’.
  • The sibling will think that we spend all our time/money/affection on Travis because he has special needs.
  • Our family won’t cope financially and mom will have to dance on tables for extra cash.
This is just a short list of the pluses and minuses that spring to mind immediately. There is the chance, of course, that we’d have another child and that kid ALSO has special needs! Lightning strikes twice! Morne and I went for genetic counselling, and now know that there is only a 1 in 10 000 chance of our Lionheart repeating. That’s miniscule! Down Syndrome is 1 in every 800 to 1 000 live births. (I’ve written an article for Your Pregnancy magazine about our genetic counselling experience, which is why I have all these fancy stats.)

So yes, to reproduce or not to reproduce – that is the question!

Wordless Wednesday: Travis the Lionfish!

Travis in his fishie costume from his school play in September: Where the Wild Things Are.
The whole nursery school class did their thing on stage to the theme song from
Spongebob Squarepants, with a bubble machine. It was awesome.

Tuesday, 16 November 2010

The winds of change

The winds of change are blowing in the Lionheart household... I can hear them rustling the autumn leaves that lie rust-coloured and brittle beneath the boughs of seasons past.

Oh, I can slather the schmaltz on thick when I'm feeling nostalic.
(I assert my Google-given right to be cheesy on my own blog.)

It's not just my leap into the unknown, to pursue my dream of being a full-time writer, snake-charming keyboards from my loft instead of from an anonymous cubicle at Indifferent Inc for a regular salary, plus cosy benefits.

I'm terrified about what this means about me, to be a Stay At Home Mom. To admit that my world does indeed orbit rather closely around my special needs son. My family is the centre of my universe. Now I just need to familiarise myself with that iconic 1950s article, "The Good Wife's Guide" from Housekeeping Monthly, and I should be ready to rock the apron strings off this new role.

Perhaps it's that Travis is fast leaving the 'baby' behind him. He's advancing at an astonishing speed these last few weeks. Today at school, he reached out to another little boy and gave him a toy to play with. I'd like to add that the two of them wrestle for this same toy every day. Simple stuff, right? On the autistic spectrum, this is a huge demonstration of improving social skills - like Britney Spears remembering to put on underwear.

Even though Travis is almost three, I conservatively place him at about 12 to 18 months (at the very most) developmentally.

I'm spoilt to have enjoyed this cuddly near-infant Lionheart for so long as he slowly gains his own sense of identity - before he started attending Wiggles & Squiggles, we'd been frozen in space and time for so long. Last night I curled around him and breathed in his 'little boy' smell, knowing that he smells less like Elizabeth Anne and more like snips, snails and puppy dog tails every day.

Travis is finally becoming a toddler. Wowzers.

(And there is even more change on the horizon. Watch this space.)

Sunday, 14 November 2010

Samson and his flowing locks

"All this roaring makes a
Lionheart very sleepy indeed..."
It's 6.30pm and the Lionheart has passed out from sheer exhaustion, thanks to his close 'brush' with certain death earlier this afternoon. Well, Travis thought it was a near-fatal experience. In actual fact, we gave him a haircut with a no.4 electric clipper.

"Potato. Po-tah-toe!" I'm sure he'd say if he could speak.

Trav's only had, say, maybe five haircuts in his three-and-a-bit years. We can't take him down to those delightfully kitch kiddie cut salons with the elephant rides, and Disney channel on all the TV screens, and the smiley, upbeat hairdresser with nerves of steel and clever tricks of distraction up her sleeve.

Travis will scream when that strange, coiffed lady leaps out at him from the bewildering wall murals of the kiddies' hair salon. He'll shake his head: no, no, NO! He'll probably lose the tip of an ear. No doubt the hairdresser will lose an entire finger when he bites her out of a sense of self-preservation.

Instead of being handed a My First Haircut certificate with a lock of his hair, I'll be handed a restraining order or an emergency room bill.

So, we have to cut Trav's hair at home. With hair clippers that buzz very loudly. It's traumatic for Travis, who is freaked out to a degree that is deeply upsetting to witness. I have to clamp the Lionheart tightly into my lap, restraining his hands and keeping a tight grip on his head while Morne wields the hair clippers. It only takes five minutes, but by the end I am covered in hair and claw marks, Morne is wound tight with stress, and Travis is exhausted from fear (and yes, loathing).

This could be avoided, I'm sure. My options are: let his hair grow, or, cut it in his sleep. The picture of Travis in the bathtub in the top right corner of this blog was taken only a few week ago. He's sporting what my best friend Liette calls his 'Mowgli' hair, like the character from the Jungle Book. It's 30 degrees-plus in Johannesburg at the moment, and the Lionheart's mane was driving him nuts: hot, itchy and scratchy. Also, he cultivated snaggy dreadlocks that would have impressed the hell out of Bob Marley. As for cutting his hair in his sleep, let's just say that Trav has modelled some interesting chunky hairstyles in the past.

The world is a frightening place when you're a Lionheart with sensory integration issues. Poor little guy.

Looks cute with the short hair though, doesn't he? Hopefully when he awakes he's forgotten all about his traumatic ordeal with the clippers.

Wednesday, 10 November 2010

Dirty Confession # 1: I miss my boo-boo...

* This post is not about parenting a child with special needs. It's not about Travis the Lionheart so much either. It's about the once-fiercly-independent-self-destructive-crazy-beautiful-lunatic-writer-babe who pens this blog, and how much she's missing her family right now.

Travis, my hubby and Soapy the Labrador are still in Kenton-on-Sea. (Lindt the cat has been missing for a week, for the record, and no ransom note has arrived: worried). I had to fly back up on Monday morning to write my last two exams for the year; I'm doing a BA Communications if anyone's interested.

I wrote the 'Love Hurts' post while waiting to board SAA 404 back up to Jozi, that smoggy, neon-slashed, city centre of my heart. I mean, if you were effectively single and childless for three days and three nights, there's no better place to be!

The idea was for Travis to spend quality time with his grandparents while I get a time-out with no toddler-wrestling, love bites, behavioural outbursts and "Eat your dinner, or else" threats. Sounds heavenly, right? Revitalise! Reenergise! Reorganise! Reprioritise! All that peppy crap.

Truth is, I'm lonely.

I sat in an exam hall twice this week for a couple of hours scribbling furiously with other part-time students. I've had two meetings with gadget and tech representatives, scoring some awesome goodies to review. I've been to gym twice and sweated in silence with my fellow fatties.

So why do I feel so alone?

Most moms wouldn't have trouble admitting that they miss their kids.

Here's my confession: it took me almost two years to feel comfortable with the "mom" persona. It wasn't the shock of finding out I was pregnant, although OH BOY did that shake things up. No ding-ding without the wedding ring and all that. It wasn't the shock of finding out that Travis is a Lionheart, a child with special needs. It was the shock of finding out that my entire identity was erased.

Now, you can argue all you like. But once people know that you are a mom, they mentally file you under a different category. I couldn't handle that. I was the epitomy of the wild, blazing young gun! Career-driven! Cool in that kooky way like Twiggy and The Smiths! (Hey, this is my story here... m'kay.)

After I while, I mentally shelved myself under the "mom" category too. Sleep-deprived - check. Baby vomit on shoulder - check. Stretchy pants - check. Leading the pack in the purely functional hairstyle department. You bet. My previous file was fed to the shredder.

But I pulled out of it. I reclaimed Stacey, and she's just as career-driven and cool, only within a different and slightly less flexible set of parameters.

And this Stacey is an empty shell without her Lionheart, her husband and her faithful hound, clearly. Thank goodness I have just one more night of wafting about the house like a Victorian ghost in boxer shorts, watching suicidal amounts of E! Entertainment and having conversations with the fridge's contents.

They get back tomorrow. Three cheers for loved ones.

Monday, 8 November 2010

Love hurts!

We're at Ouma and Oupa's house in Kenton-on-Sea for a couple of days. The Lionheart dug his fingers into my (embarrassingly squishy) upper arms with excitement when he made his entrance. For the record, this is a little ouch for mom.

Then later, when Travis lovingly snatched at my arm and took a big chomp - "No biting!" I remind him, and he looks chargrined - I realise, this is Not Normal. Obviously. I know it's not normal for a toddler to pinch, nibble, lick and smack other people when he's excited. It must look quite freaky to outsiders.

It makes me giggle inside when we get visitors and Travis wraps his arms around their calves and gives it a gentle nuzzle and lick. Just the expression on their faces... they want to shriek: "Eek! I'm being bitten. Somebody help". But instead they politely enquire: "He's not going to bite me, is he?"

It works like this...

Travis can't speak, hence, he expresses himself and his feelings in a very physical manner. When he's angry, the Lionheart roars and bites and pinches to express the intensity of his frustrations. When he's feeling loving, this rush of affection translates into some arm nuzzling, perhaps a gentle love bite on the leg... plenty of spit and licks.

Wow, it reads even stranger on paper, doesn't it!

So yeah, being loved by a Lionheart hurts a little. He like to squeeeeeze! I will say this: in a world of Facebook and Skype and outsourcing to India, having this kind of intensly physical relationship with another human being is gratifying.

Thursday, 4 November 2010

Spit, don’t swallow...

Just when you think you’ve got this special needs parenting thing down, you’ll uncover something that makes you go: “What the FLAGNOG!”

On Sunday morning I was at a Wiggles & Squiggles baby shower for an expectant teacher (meaning pregnant, not one in a state of expectation), and one of the mums mentioned in passing: “Isn’t it terrible when your kid keeps swallowing milk teeth?” I must have had that blank expression plastered on my face when I’m too polite to say: “Er, what?”

So here’s the skinny:

If you have a Lionheart, like our Travis, chances are excellent that first tooth you put under a pillow, into a shoe, whatever your family tradition is for the Tooth-Fairy-slash-Tooth-Mouse-slash-Creepy-Tiny-Tooth-Hog... will be a stunt tooth. Maybe one of those vampire fang jelly sweets...

This is because it’s pretty common for special needs or disabled kids to swallow their loose baby teeth. All the moms in the baby shower circle nod sagely as I process this new fact.

You’ll remember, I didn’t even notice that Travis was sprouting teeth a few weeks ago – so I have no idea how I’m going to monitor his baby teeth when they start getting loose. It’s at about age 6, right? Frack, I don’t know. I need to brush up on this kind of thing.

Did I just say ‘brush up’? Bwah ha ha!

Perhaps, what with Travis the Lionheart being autistic, I can turn a regular milk teeth inspection into a game. At the moment, his Teeth-Brushing Song goes like this: “Brushing the toofies! Brushing the TOOFIES!” It can easily become: “Wiggling the toofies!” Best sung completely off-key of course.*

You gotta ask yourself one question: how important is that first tooth to you? I’m fairly sentimental; there’s a definite chance that I’ll be sifting through kak for days if the Lionheart wakes up one morning with a gaping hole where his incisor used to be, and nothing to show for it.

That’s unconditional love for you, right there.

* With most special needs kids, all flavours of ’em, it helps to give them a cue. For Travis, we sing a going-to-school song, there’s the bath-time song, and the brushing-the-toofies song. By, for instance, singing about what’s happening next, your Lionheart feels more empowered, more in control, because he or she knows what activity is coming next, and can prepare.

For visually impaired children, there is a reference basket in each classroom. It contains objects like a ball, a wooden spoon, a piece of rubber mat... the visually impaired child is handed the object just before play-time, cooking-time, and mat-time. So he or she knows what’s coming next.

It can like to be interesting, huh?