Unplanned Leaving

Liam bike.jpg

I love to run. This is lucky, because so does Happy Chin.

I participate in several fun runs a year, some for charity, one because my dear mum died of cancer, and all so I can stay fit enough to keep up with Happy Chin.

He’s not running to keep fit. He’s usually bolting for the nearest shop in search of coke. We call it running away, or absconding. His Occupational Therapist calls it Unplanned Leaving.

So far he has left (unplanned):

  • Home
  • The beach
  • A school excursion to Bunnings when the McDonald’s over the road proved irresistible
  • Vacation care (across 4 lanes of traffic with Gran in hot pursuit)
  • His group home (across a very busy road with an extremely hungover me in lukewarm pursuit)
  • Day Support (across 2 lanes of traffic narrowly missing a reversing truck. Let’s just say that placement didn’t last long)

One memorable day we went to the beach. It was patiently explained to Happy Chin that we would walk up the beach, touch the rocks and then proceed back along the beach to the car. Then we would get ice-cream. Perfectly clear. Mr August had the dogs, the Lamington had his red inflatable crab ring (with large red pincers at the front) and off we set.

When we reached the end of the beach, HC obediently touched the rocks, then took off. He had no wish to delay the moment of ice cream gratification. Mr A and I looked at each other. Whose turn was it to chase? As I had a fun run coming up the following week I volunteered and set off in pursuit.

Happy Chin had a reasonable lead on me, but after a kilometre or so it became clear I was not going to catch him. It was unlikely he would go near the water, but in the back of my mind was the fact that only a few weeks earlier, an autistic boy had drowned at this same beach. His carer had died trying to rescue him.

So I upped the tempo, but to no avail. Luckily, after another 800 metres or so I could see Happy Chin slowing his pace and plonking himself down on the sand beside a total stranger. The total stranger turned out to be a completely mortified teenager who was trying his best to look cool at the beach. His efforts were seriously undermined by the sudden appearance of a panting 19 year old autistic boy going “Puffed! Puffed!”, and an equally red faced mother approaching. Factor in Mr August’s appearance, complete with a red rubber crab ring round his middle towing a small whining boy on a dog lead (the Lamington) and you can appreciate why it wasn’t the best day of the poor young man’s life.

Luckily Happy Chin didn’t stick around to destroy the teenager’s beach cred for too long. He was up and off at a sprint again, straight to the lifesaver’s tent where he sat down next to the two prettiest blonde female lifesavers there. Nothing wrong with his eyesight.

So we got ice cream, after a hurried parental discussion about whether this was Proper Parenting. After all, he had run away (sorry – Left, Unplanned). But on the other hand, we did say we were going to touch the rocks then go get ice cream, it was we who failed to specify the pace at which this was to occur.

Mr August had had his chance to recapture Happy Chin a week earlier, during the Great Bicycle Escape. Anglicare had very generously purchased an adult-sized 3 wheeler bike for Happy Chin’s use and he just loved to ride it along the bike tracks. We would accompany him with the Lamington on his small bike, and usually one of the dogs. Tech Support absolutely declined to be part of an expedition so patently uncool. On this occasion, I agreed to be the person to run alongside the bike whilst Mr A helped the Lamington, who was still on his bicycle L plates. What I didn’t know was that the big bike’s gears had been knocked to the low setting as we took it off the back of the ute. Mr August always made sure the gears were set to high when he ran alongside HC. This slowed the bike down to an adult’s jogging pace and the harder work on the pedals meant he slept better at night (and so did Happy Chin, incidentally).

But with the gears on low, Happy Chin just shot off as if he’d been fired out of a cannon. I bolted after him, but there was clearly no way I was going to catch him. After about a kilometre and a half, the writing was on the wall. The busy main road loomed at the end of the bike track. So did the shop, where we would always stop for a refreshing can of coke. Happy Chin was of course fully aware of this and was hell bent on getting there as quickly as possible. To do so he would have to negotiate a sharp turn, ride through the service station and into the small shop’s carpark. It was increasingly clear he would be doing so sans me.

Before I had a chance to start properly panicking, Mr August shot past me on a bike. We hadn’t brought another bike. How had he got a bike? Never mind, he was catching up with HC.

Turns out Mr A had spotted two cyclists chatting by the side of the track, blurted “My autistic child’s headed for the road, can I borrow your bike, mate? Here, hold my dog,” grabbed the astonished man’s bike and ridden off. The hapless cyclist was left without a bike and having gained a small white dog.

But even the speedy Mr August was not in time to stop Happy Chin, who sailed around the bend, shot through the service station and into the carpark where he pulled up, abandoned his bike and waltzed into the shop without a care in the world. Mr A arrived just in time to pay for his soft drink. I arrived in time to participate in another discussion about Proper Parenting.

To the casual observer it may appear we were unconcerned to the point of negligence about this behaviour. This isn’t the case, but let me add that HC has always had excellent peripheral vision. It’s one of those quirky skills people on the autism spectrum often have. They may struggle to look at your face when they’re talking to you, but they can see you alright. Similarly, Happy Chin may often give the appearance that he can’t hear what you’re saying, but he can hear a packet of chips being opened in the kitchen from the bottom of the garden.

His wonderful peripheral vision was of some comfort to me as I pursued him across a busy road the morning after a big night out at a soccer function. My head was pounding and a swift chase into the shopping mall was not the medicine I had in mind. I was furious when I finally caught up with him in the shop helping himself to a large bottle of soft drink from the fridge.

“Morning mate,” said the shop girl, cheerily. “Getting a drink are you?”

I meanwhile lectured him all the way back to the car.

“That is NOT the way to get coke,” I fumed, ineffectively.

Of course it is the way to get coke! Happy Chin had just proven it. You simply run across to the shop and grab it out of the fridge! The lady behind the counter doesn’t mind.

Really, sometimes parents just don’t have a clue!

It’s My Party and I’ll Meltdown If I Want To

Mum & Liam ferntree

Ah, the dreaded meltdown in a public place! How many parents have war stories about tantrums in the supermarket or shopping mall, in full view of a disapproving gaggle of shoppers (who all clearly think you are the World’s Worst Mum or Dad)? And isn’t it uncanny that the more tense and stressed you are, the more your child seems to ramp up the tanty, as though he or she can smell your fear?

Will we ever make it to the bank on time? Will we be late picking up Junior Tech Support from daycare (again!)? Will we get home in time to unload the shopping and prepare a meal that can be eaten before 9PM? Is there any wine in the fridge?

These are just some of the random thoughts that would drift through my mind during one of Happy Chin’s epic toddler tantrums. He really threw himself into it. One of the things I couldn’t help but admire was how authentic he was (and still is). This holds for toddlers in general actually. If they’re upset they’ll just throw themselves to the ground and wail hysterically. There’s no attempt to hold back or disguise their feelings. I often wish I could do that when everything gets too much, but then I reflect that we probably get enough curious stares in the supermarket.

Happy Chin had so many tantrums that I got in some really good practice at various coping strategies. I quickly worked out that shouting at him to stop wasn’t much use, ditto physical violence (which I’m opposed to and have only ever done when pushed to the absolute limits of human endurance, although I have had passers-by advise me that what HC needed was “a good smack”). Picking him up and marching off to the car, writhing child under one arm and shopping abandoned, did certainly work until he got too big. Not a very practical strategy if you want to eat though.

The most effective coping technique I found was just to wait it out. Eventually Happy Chin would exhaust himself and provided I could keep his flailing limbs from getting too near any big stacks of cereal boxes or baked bean tins, then he wasn’t really hurting anyone. Other shoppers just had to negotiate their trolleys around him, or else come back to the confectionery aisle later. I, meanwhile, would attempt to adopt a kind of Jedi/Zen-like state of mind, breathing deeply and striving for calm within, trying to find a mental place far, far away from “Clean up in Aisle 5! Clean up in Aisle 5!”

Actually, learning to block everything out and take yourself off to a mental happy place is quite a useful thing for a parent. When I was a childless person, I used to marvel at my sister’s seeming inability to hear her child asking her for a biscuit for the twentieth time that morning. Can’t she hear him at all? I wondered. What is the matter with her? Motherhood must have really fried her brain! It was only much later I realised that her mind was elsewhere entirely, probably strolling along a beach in the Maldives or getting her hair done by Brad Pitt.

Back then, I was also acutely conscious of what other people thought. Happy Chin was our first child, and we had no idea at all of the journey ahead of us or the challenges we’d face. There were some books available, but none of them seemed to help with the complex behaviours we were encountering. Magazines all featured pictures of happy, smiling tots and the main difficulties the parents seemed to face were colic and sleeplessness.

So we made it up as we went along. Trial and error, late night internet searches, one or two terrific mentors (thank you, Australian Tuberous Sclerosis Society!) and lots of tears ensued as we muddled through. No one else seemed to be in our situation, and I feared taking HC out in public. I just couldn’t face the judgmental looks. We took to almost hiding him away, venturing out to the park or to my sister’s home and that was about it. Shopping became a thing that happened at ten o’clock at night when he was in bed.

It’s funny to look back now on how worked up I got about what other people thought. One elderly man actually tutted at Happy Chin as he stepped gingerly around him during one epic meltdown. I’ve completely forgotten what the tantrum was even about, but I remember snapping, “If you have any suggestions, I’d love to hear them!” at the man as he beat a hasty retreat. Stupid old goat, I thought furiously, his wife probably raised his kids while he was at work. What would he know?

Another time I noticed a middle aged woman staring at us in the supermarket queue. Happy Chin was busy grabbing things and throwing them out of the trolley. My Zen had deserted me that day and I was flustered and embarrassed, scurrying around on my hands and knees trying to collect our items. (Incidentally, why isn’t there an express lane for parents with special needs children? There should be. And why can’t I get a disabled parking permit for my able bodied autistic child who can certainly walk, but who breaks away from me and runs out in front of cars? Surely public places can make more convenient parking spots to accommodate the needs of varying types of people? Anyway).

We finally got through the checkout and were beating a swift retreat to the carpark, when the woman stopped me.

“Excuse me?” she said.

“What?” I snapped. My mind had been busy working itself up to a fine head of steam imagining how she was judging me, and what right had she? Let her walk a mile in my shoes! What would she know? Her children were probably all perfectly behaved, etc, etc. I also needed to get HC to the car fast, or lose more groceries to the floor.

“I hope you don’t mind my saying so, but your little boy reminds me so much of my grand-daughter. She has autism.”

To say I was ashamed of myself would be putting it mildly. This lovely lady, far from thinking I was a bad parent and my child a brat, had actually been thinking fondly of her own special little person. She hadn’t been judging me at all, but I sure as hell had been judging her!

I mumbled a brief “Oh, really? How nice,” and shot away to the car, cheeks burning.

That day marked quite a turning point for me. I didn’t magically stop caring what other people thought, but I stopped trying to look into their minds, and I stopped assuming people always thought the worst of me. Ultimately, the tantrum your child is having is your child’s problem, it has nothing to do with you. It’s not a reflection on how poorly you are doing as a parent.

To borrow a snatch of dialogue from one of my favourite books:

“People are watching!”

“Let them, and I trust they’ve a fine day for it.”

The Object of my Affection

LiamIt is a truth universally acknowledged that a Happy Chin on his way to day support must be in want of an object.

It’s usually a book or a magazine, but not just any book or magazine – Happy Chin is very specific, it has to be “that one.” Occasionally he’ll give me a clue such as “Up magazine” (airplanes) or Busy Boats (book, ripped to shreds by HC three weeks ago), but mostly he’ll just assume I know what he means. The trouble is I usually do know, and he knows I know. Happy Chin’s words aren’t very many (although they’re increasing all the time) but I am the person who understands him best, so I’m often the family translator. Remember the Babel Fish in The Hitchhiker’s Guide to the Galaxy? You put it in your ear and you could understand every language in the galaxy? Well, I’m Happy Chin’s Babel Fish.

So the search begins for said object, without which it is completely impossible to leave the house. The later we are running in the morning, the more obscure the location of the desired item. When Happy Chin is implored to help in the search, he helpfully wanders round pointing to rooms he hasn’t been in and leading me up blind alleys such as the shed and Mum and Dad’s room. Tech Support and the Lamington are pressed into service and ordered to drop everything and help look. I’m sure when they’ve left home one day they’ll have fond memories of the hours spent searching for their brother’s belongings. “Hunt the iPod” has become a favourite family game in our house. If only Apple would invent an iPod Nano that A. doesn’t cost $200 (we go through about 5 a year) and B. has a tracking device. It should also be able to survive being hurled against the wall and being wee’d on in bed. I must write to Apple when I get a spare minute.

Finally, the object is located and we can leave the house, hurrah! When we get to Day Support, Happy Chin inevitably throws it straight onto the roof or over the fence while I beat a hasty retreat, arriving at work late, panting and in desperate need of a coffee, mumbling something unconvincing like “sorry, but we couldn’t leave the house without his octopus.”

During Happy Chin’s school days the bus came to pick him up. The driver and teacher’s aides were wonderful individuals, and they put up with a lot, mostly with grace and humour. Most of us don’t have jobs where we get spat on, bitten and kicked on a regular basis. The people who work in schools (all schools) deserve our undying gratitude and respect, and when I am in charge, they will all be getting a pay rise!

But objects were a problem on the bus. Happy Chin was going through his Unpredictable Throwing Phase. It only lasted 18 years. If you are a parent of a special needs child, you expect to cop your fair share of books or toys to the back of the head, but you really can’t have staff and other students exposed to this kind of risk, it isn’t fair. So every morning when that bus pulled up, we had to divest Happy Chin of his objects at the front door. Dear Reader, I’ll leave it to your imagination to work out how much fun this was.

Hot water bottles, hardback books, full mugs of tea, a guitar, his accordion – all potentially dangerous projectiles. Soft toys, balloons and pillows were suggested and firmly rejected. Happy Chin wanted to take the cordless drill.

Or else he wanted to take Dirty.

Dirty is Happy Chin’s word for the toilet brush. When we were first toilet training him as a little boy, he was fascinated with the toilet brush and would grab it.

I would say, “Don’t touch. Dirty.”

Happy Chin didn’t know about punctuation and interpreted this as “don’t touch dirty.”

So the toilet brush became “Dirty” for ever after.

Happy Chin is still completely fascinated by Dirty and will carry it around and even kiss it (ewww) if he is allowed to. I have tried interesting him in the bottle brush, the feather duster and the vacuum cleaner brush to no avail (although he does love long cobweb brushes and will demand we buy one each time we visit the $2 shop. I wish he’d use it on the cobwebs, but hey ho)

One friend said, “Why not buy him his own Dirty and then he’d have a clean Dirty to play with?” An excellent suggestion, but do we really want Happy Chin walking through life clutching a toilet brush? I mean, people stare enough as it is.

This obsession with unsuitable objects reminds me of a book I read years back, which was penned in the 1960s by the mother of an autistic boy who loved pink rubber washing-up gloves. He used to wear them on his feet. He also quite liked to go about naked and was fond of absconding, especially at night. She’d call the police and explain the problem, and they’d ask, what does he look like? She’d say well, he’ll be naked and have pink rubber gloves on his feet. You can’t miss him!

So we’ve hidden our Dirty. If you want to scrub the toilet in our house, you have to go out to the shed and rummage around behind the surfboards, carry Dirty in in utmost secrecy, furtively clean the loo and then bolt back to the shed to stash it before Happy Chin sees.

When we visit other people’s houses and HC find their Dirty, it’s Game On. I then switch to UN negotiator mode and when that doesn’t work, I bribe him with treats.

I always swore I would never bribe my children. Then I had children.

Actually, I prefer to think of it as compromise. When you’re running late for work, dash upstairs to do your hair and return to find the entire contents of your linen cupboard on the hall floor, the overwhelming temptation is to sink to your knees and cry.

But you don’t have time for that. You must square your shoulders, straighten your spine and compromise like mad.

“OK, you can take one flannelette double bed sheet set to day support if you get in the car now.”

“No, you may not take three flannelette double bed sheet sets to day support.”

“OK, you may take ONE flannelette double bed sheet set to day support AND I’ll buy you a coke on the way home IF you get in the car NOW.”

Fast forward to a week later. I am standing in front of the linen cupboard scratching my head. I then place calls to day support, Happy Chin’s group home and the grandparents – have you by any chance seen a flannelette double bed sheet set? Blue striped? No? Would you mind awfully looking on the roof?