The Willy Monster

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Regular readers may remember my piece on absconding (‘Unplanned Leaving,’ January 2016) and might have noticed a lack of recent anecdotes about Happy Chin’s tendency to disappear at speed. Perhaps the behaviour simply disappeared, like Barack Obama?

I’m afraid that instead, the behaviour temporarily disappeared, only to emerge later just when we thought it had gone for good, like Tony Abbott.

So it was with some surprise that we fielded a phone call on a Friday evening around wine o’clock informing us that our eldest son had been arrested. To be honest, if any of our sons was likely to get into trouble with the police, it’d be Tech Support I’d have my money on, especially after his recent move into a share house with three other bartenders. Drunk and disorderly maybe, or causing a public nuisance with his rap music.

Happy Chin, however, had managed not one, not two, but four misdemeanours. Let me elaborate on his crime spree for you.

He’d been at his home with his carer, happily listening to music and rocking away on his swing seat on the front porch. The carer ducked inside to gather some folding and when she returned moments later, HC was nowhere to be found. She quickly checked the perimeter of the property and when he wasn’t located, raced inside and phoned in a missing person alert with the local police.

Meanwhile, down the road, an elderly man (aged 90) received a knock at his door. He opened the door to Happy Chin (Trespassing) who promptly pushed past into the house (Unlawful Entry), wandered into the living room, sat down on the floor and started going through the man’s DVD collection.

The poor gentleman, unable to persuade HC to leave simply by asking him, phoned the police. A description of a tall autistic boy with headphones gone missing in the local area, followed by a call reporting a home invasion by a tall autistic boy with headphones  didn’t exactly stretch the mental resources of the local police, who arrived 5 minutes later.

Entering the living room, they greeted HC by his name and told him it was time to go home.

“Noooooo!” he shouted, unsurprisingly.

After several unsuccessful attempts to use reason, the police took hold of an arm each and hauled HC out to the waiting police car (Resisting Arrest). HC took the opportunity to add a final misdemeanour to his charge sheet by biting and kicking the coppers in the process (Assaulting a Police Officer).

As with all of Happy Chin’s previous episodes of absconding, it all could have ended so much worse. The elderly gentleman declined to press charges, HC was returned safely home and so far has not returned to the scene of the crime (although the carer had to return next day, embarrassingly, to retrieve HC’s headphones which had been dislodged in the struggle).

We now have a closer relationship with Kingston police than previously, and a very healthy respect for their patience and compassion. The Senior Constable assured us it was all in a day’s work for them. Obviously the use of force to remove HC was not ideal, but the police are not trained disability workers and can’t be expected to stand there negotiating because they’re not allowed to use restrictive practices and hoping that an offer of Soda Stream or Bob the Builder will do the trick.

I often wish I was big and strong enough to just pick HC up and remove him from a situation. It was easy enough to do when he was little. Tantrum in the supermarket? No problem, simply grab child, abandon groceries and bolt to the car.

Now he’s a grown man, those who are involved in caring for him have had to develop some pretty specialised skills in the case of emergency. Take the problem of ‘nuding up’ on a recent bushwalk. Happy Chin was accompanied by a young male carer who was new to the team. He was faced with the not insignificant problem of an adult male charge determined to take the term ‘nature walk’ to its logical conclusion. Knowing the walking track was popular and he was very likely to encounter fellow walkers whose definition of experiencing nature somewhat differed from Happy Chin’s, the carer devised the only strategy he could think of at short notice. He invented the Willy Monster.

I’d never heard of the Willy Monster. Apparently he lives in the wild and eats willies. So you obviously have to be very careful if you’re out in the bush and you possess a willy. Wandering fully naked along a track in broad daylight is just tempting fate.

When I heard about the Willy Monster, I was appalled, amused and impressed (all at the same time). Appalled because it’s obviously wrong and totally inappropriate, amused because let’s face it, it’s really funny, and impressed because it showed amazing initiative from a young carer faced with a potentially disastrous situation for his client. Talk about thinking on your feet! I mean, he got the desired result. HC put his clothes back on, no one reported him for indecent exposure (his charge sheet was already long enough for god’s sake!) and they had a successful outing.

Although the Willy Monster may represent a serious setback in our attempts to get HC to do a ‘nature wee’ when out and about (I mean, who wants to dangle their equipment in the vicinity of a potential knob nibbler?), the strategy has never had to be used again and our young man is not waking up with nightmares, clutching his genitals.

So all in all it was a win and certainly no more improbable or frightening than a fairy who comes at night and absconds with your molars, a random dude who drops a bag of sand on your head just as you’re nodding off or a fat guy in a red suit breaking into your house at Christmas time.

Holy Sheet

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I wonder what I’d have thought if told in 1997 that my baby son would be obsessed with Manchester when he was 22?

Probably, ‘Excellent, I’ll hang on to my New Order records!’

Turns out it’s manchester, not Manchester.

The current obsessive items Happy Chin drags around wherever he goes are a motley collection of sheets, doonas and pillowslips. I would have preferred New Order records, really. So much more portable.

Primary colours are favoured, and his beloved teddy bear linen of course. As we lost the matching bear pillowslip a long time ago, he simply brought me a permanent marker and a plain white pillowslip and demanded ‘Draw!’ He now has a bear pillow, albeit one with a slightly deranged looking bear on it. It’s fair to say that I’m not the artist in the family.

He’s also enjoying the activity of laying sheets over his bed and neatly smoothing out the corners. He has so many layers on it’s getting a bit Princess and the Pea in his room, and since he still enjoys his midnight snacks of leftovers, we’re using real peas!

Still, it’s a harmless enough activity, and hardly to be discouraged. Making his bed is good, right?

Take books – always a must have accessory, but bang on trend right now according to Happy Chin. Turns out the subject of the book doesn’t matter in the slightest, it’s the jacket colour scheme that’s the key. If it’s black and red, it’s worth a read, or at least a trip in the car to his house. I really don’t mind him taking our books to and from his place. I mean, he likes books! Who cares why he likes books? He just likes them, OK? Books are good.

So this morning when I dropped him off, he had a good collection going which included Roget’s Thesaurus, a German dictionary, Anna Karenina, Women in Love and Emma. I expect on Sunday morning I’ll be picking up a fluent German speaker with a wide English vocabulary who is well versed in 19th and 20th century romantic literature! Or not. I mean, whatever.

His vocabulary is steadily increasing, though. It seems every week when I go to pick him up he’s acquired a new word. Mr August taught him a new one recently, sitting on the toilet as HC pounded on the door.

‘Occupied!’ Mr A shouted, desperately trying to manage number 2’s while propping one leg against the door to prevent intrusion (who said special needs parenting doesn’t teach you cool new skills?)

Strangely, it worked. Happy Chin retreated, and shouted ‘Occupied’ at the top of his lungs for the next 2 weeks every time someone closed a door.

I made the mistake of telling him not to be a dickhead last week (yeah, I know, my bad, but it just slipped out) and he danced round the house for the next 3 days shouting ‘Dit Head.’ I’m only hoping his carers failed to understand what he was saying (I bet they didn’t).

He’s also learned about polite greeting when encountering strangers, and randomly bellows ‘Hello!’ at people when we’re out and about. It’s slightly alarming I imagine, out for your daily walk and being loudly greeted by a large bouncing individual with headphones and a doona cover, but the strangers mostly smile, so I guess it’s OK.

For years I’ve had a dream that he walks into the kitchen and says ‘Mummy, can I please have a Vegemite sandwich?’ I don’t know why I keep having this dream. Perhaps other parents dream their child is saying ‘I’d like to thank the Nobel Committee.’ When you have a child like Happy Chin, your ideas on what constitutes a Great Achievement are different, I guess.

Name That Stain

 

Bolognese

So Happy Chin has discovered red wine. Usually he drinks juice or water with his meal (our children favour apple and blackcurrant, quite a similar colour as red wine) but he suddenly decided what we were drinking looked interesting. Sure, we said, you can have a glass (he’s 22, after all), so he went ahead and poured a large glass for himself.

Now, we knew he was unlikely to drink it. HC favours sweeter flavours and this was a dry red. So we weren’t surprised when he chose instead to wander round the house with the full glass, finally abandoning it on the kitchen bench just before bedtime.

Cut to Wednesday evening. Mr August and I are standing in the kitchen. I gaze at the floor and sigh.

“I wish I could be bothered to clean that red wine stain off the floor.”

“Mmm” agrees Mr A. “And I wish I could be bothered to scrub that coffee stain off the ceiling.”

How the coffee stain got on the ceiling is another story, but Name That Stain is a game that’s been played in our house for…well, about 22 years actually.

I used to be the manager of a small hotel. I’d frequently be called to a room by housekeeping to stand around a bed or sofa and play Name That Stain. According to the domestic goddess book of cleaning tips borrowed from my mother-in-law, you need to know the nature of the stain before you can properly address yourself to its removal. Protein stains require application of enzyme cleaners, oil stains need dry cleaning fluid, blood requires cold water and red wine is best removed with dishwashing liquid and vinegar.

But of course, we hadn’t been involved at stain creation stage, so it was anyone’s guess. I mean we could hardly go asking guests, “what exactly were you doing??”

Is it lipstick? Could it be blood?

It looks like chocolate….but what if it’s not?

Smell it!

I’m not smelling it, you smell it!

Euwwww!!

And so on.

People who stay in hotels really don’t have a clue how often other people are in and out of their rooms. It’s a regular Grand Central bloody Station in there. Truly, from rom the moment you go out doing touristy things to the moment you return, it’s a cast of thousands in your room!

Firstly, housekeeping have to get in there to clean. That’s a given. Then there’s any number of random tradespeople called in to fix various things that may have gone wrong between check in and breakfast. They’re literally standing by to fix that dripping tap or wobbly shower head.

“Right, they’ve just gone out – in you go!”

2 minutes later…

“Shit, they’ve come back – out you get!”

If it’s magazine delivery day, I or one of my team might be in and out delivering brand new copies of Vogue or Harper’s to your room.

If housekeeping report a light globe out I might be perched up a ladder replacing it, replenishing your fresh flowers, or simply in there because you mentioned at breakfast you’d enjoyed the muesli and wouldn’t mind getting the recipe.

Let me reassure you at this point. We Are Not Interested In Your Things.

Staff at a reputable hotel do not go through the guests’ belongings. We like our jobs. We want to keep them. We have bills to pay. We are not looking under the bed for handcuffs. We do not have time. We have, at maximum, 3 or 4 hours to turn all the rooms over. Sometimes we only have the 45 minutes it takes for you to sit in the morning room and drink a cup of coffee.

We are simply interested in returning your room to the state in which you first entered it. Pristine, spotless, and giving the strong impression that no one has ever slept in it before, even though 867 people have. This is the great hotel illusion we all buy into when we check in. It’s a mutual agreement to suspend disbelief, like going to see a Marvel movie. I won’t tell you it’s all CGI and you won’t ask in case you find out.

In the meantime I wish I could magically CGI away the stains at our house, although they do have a kind of sentimental value. Look at that hot chocolate mark on the wall, I might point out to Mr A, I scrubbed and scrubbed but it never did come off. Remember that day? Wasn’t that the day you had to come home from work at 3PM because I was having a meltdown? And I threatened you with divorce if you didn’t bring wine with you?

In general, parents have a pretty good understanding of the basic range of stains they can expect on any given day. Poo, blood, vegemite, crayon, chocolate, jam, dirt, grass, to name but a few. I would argue though, that it’s only the parents of special needs children who are pleased to discover their child’s face covered in chocolate. It’s so much better than the alternative when it comes to brown stains!

As a parent of a child with Tuberous Sclerosis, blood is my specialty subject. Happy Chin’s angiofibromas (small blood vessels on the surface of his face) bleed easily and copiously when scratched or knocked, so pillowcases and T shirts are often cover with red stains. There’s sometimes a bit of a Texas Chainsaw Massacre moment when peeling back his covers of a morning, then I just sigh and reach for the laundry soaker. I wonder if Napisan would consider a sponsorship?

During the Flying Pasta Days (as previously described in this blog) I often found myself deciding whether to make creamy pasta (white pasta) or tomato pasta (red pasta) based on the potential level of difficulty involved in getting the stains out afterwards.

On the whole, I do wish I wanted a clean house. If I wanted one more, maybe I would do something about it. Instead I’m sat here writing this. It’s a legacy of a childhood spent hiding up a tree reading a book. If I disappear into a book, the world also magically disappears. It’s just a shame the stains don’t magically disappear while I am in the book.

I suppose I could outsource, but really we can’t afford a cleaner. Perhaps if this blog post goes viral….

So please feel free to like and share!

Trust Children to Succeed

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It’s been a few months since I’ve had time to blog. We’ve been busier than Donald Trump’s Twitter feed.
So I have lots of news about our Happy Chin to share with you. Firstly, and most exciting of all, HC has a job!
We seriously doubted this day would ever come for him, and of course Mr August and I are super proud (as are the whole family). Happy Chin’s primary carer, a woman of action, approached a local garden supplies centre and was able to arrange for him to work one morning a week stacking wood for them.
Have I told you before how much HC loves stacking wood? Living in Tasmania, where it’s cold for much of the year, we have a wood heater and so chopping and stacking wood is an activity the whole family can enjoy (whether they like it or not!). Luckily, the Lamington likes to chop, having acquired an axe at a recent visit to the tip shop. He was so pleased with his $5 purchase that he kept it by his bed for a week, until I discovered it and ordered its removal to the garden shed on the grounds that people bearing cups of tea at 6AM don’t deserve to be dismembered as they pick their way through the rubble to deliver said tea safely to the bedside table.
Happy Chin loves to stack wood. Our theory is that heavy lifting is calming for him, as he won’t settle for just one log at a time but insists on carrying three or four. He also favours a particular time of day for this exercise (mid afternoon). He stands by the front door and says “Wood, wood!” until someone is available to supervise the carting of logs from the woodpile to the wood storage cupboard by the fireplace. This activity is not restricted to winter, in fact it has been taking place throughout summer. Even when the wood cupboard is full to bursting, HC still insists on carrying wood. So we use the simple expedient of having him empty the wood cupboard and take it all back outside and to stack on the wood pile. The following day the exercise is repeated in reverse, and so on. When a load of firewood arrives in the driveway, he is in log heaven.
So naturally, when the garden centre asked what type of work he could do, it was a no-brainer for his carer. For a long while, we had been thinking about Happy Chin’s talents. He likes to arrange things, so we thought perhaps stacking food parcels could be a good opportunity, but then we reflected on his love for food and a certain fizzy substance, and rejected that idea. Sorting surgical instruments was another thought, but his fine motor skills aren’t quite up to that yet. The advantage of the garden centre is that the wood pile is located well away from shops, main roads and people. He goes along with his carer and works for as long as he is able and interested. He isn’t actually paid by the garden centre, but we set some money aside from his personal spending which he receives after he’s finished, so we can help him understand the concept of working for money.
He is very proud and happy. He wakes each morning and says “Work, money.”
“No,” we say, “work is on Thursday. Three more sleeps!”
He has his own work gloves and work boots, and high visibility shirt. We are so pleased for him. And if I might just throw in a small plug – next time you need garden supplies, please consider the Leslievale Garden Centre. They are a wonderful bunch of humans, and their prices are pretty good too!
Happy Chin is displaying more maturity with every passing day. I have been interstate at a conference for the last few days, which has been great but worrying as the event fell on the days that Happy Chin comes to our house. It’s hard not to worry when you’re away from your kids. Not that Mr August can’t cope with any situation, just that when HC decides he’s in a ‘no’ frame of mind, two days can seem like a very long time. He is often unsettled if I am away (which doesn’t happen often) and will call for Mummy with the kind of persistence and energy that I wish Tech Support had applied towards his school work during Year 12 at high school.
Exciting news, though – he had a very happy weekend with his dad and didn’t ask for me once!
They went to the park to watch the soccer, walked the dog, cleaned the house….actually I’m making that last bit up. I don’t know if they cleaned the house or not as I’m writing this from the plane home. Thanks for indulging me in a bit of wishful thinking.
It was doubly sweet to see progress in him, because things seemed to be going backwards over the last couple of months. We were seeing a return to some old behaviours of concern, and unfortunately we’ve been through another 2 day support providers. Our young man was bored and under stimulated and let us know in no uncertain terms with unsafe and challenging behaviour. So we are in limbo yet again.
Back to the old drawing board! Really, we should be regular Da Vinci’s by now!!
Mr A couldn’t help but wryly comment, ‘for God’s sake, we’ve kept him safe for 22 years and they can’t even last 6 weeks!’
He’s right of course. We have kept him safe.
Except for the Great Bicycle Escape. And the vacation care escape. Yeah, I guess we should throw in the time he was arrested. Probably also that time he disappeared for an hour and was found on a neighbour’s lawn. And the time he put his fist through the window.
But apart from that….
And anyway, how safe is the average 22 year old man? He’s never had alcohol poisoning, never taken drugs (apart from anti convulsants, anti psychotics, the odd Panadol – oh and Valium of course). He’s not having unsafe sex. He’s not out in cars with god knows who driving at unsafe speeds. He’s been intensely supervised his entire life, never been robbed or mugged (thank goodness!) I don’t know many 22 year olds who’ve had as safe a life as Happy Chin has.
I’m reminded of the line in Finding Nemo where Marlin says, ‘I just don’t want anything to happen to him!’
Dory replies, ‘But then nothing would ever happen to him!’
When the boys were younger and we were at the park, it used to irritate me when other parents would call to their kids, ‘get down from there, you’ll fall!’ Why undermine their confidence like this? If they fall, they fall. They might have a scratched knee and a few bruises, but you can’t wrap kids in cotton wool all their lives.
Why is there this assumption that Happy Chin, when taken out, will always abscond or misbehave? There was a poster on the wall of his day care centre when he was small that said Trust Children to Succeed. Why aren’t we trusting him to succeed?

Chin Up!

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Chin up everyone! 2016 wasn’t so bad.

Of course, there were some very sad losses. Mr August is still getting over the death of David Bowie. In fact, if you come across any conspiracy theories suggesting The Thin White Duke is in fact still alive and working deep undercover for MI6 in their Fashion Crimes Department, please send them on. That would cheer Mr A up enormously.

Celebrity deaths do spark worldwide mourning on a large scale (witness the explosion of purple on Prince’s untimely death), but many ordinary folk lost family and they lost them young. Old friends lost their healthy 42 year old son, out for a run, as was his wont. He suffered a massive heart attack and died, leaving behind a wife and young children. A family in the local school community lost their 19 year old to suicide. On Christmas Eve, I received a phone call from the Front Desk at my work. A father had phoned to cancel the Christmas Lunch booking. His daughter had died the day before. My colleague asked would I authorise a refund on the non-refundable Christmas lunch tickets? Yes, of course I would. The father hadn’t asked for this, he was simply being courteous and cancelling their seats so some other family could go along. My heart went out to him and his family, their Christmases will never be the same again.

So I was determined not to let the usual Christmas stresses get me down. With Happy Chin home for a couple of weeks over the holidays, excitement was high. Surprisingly, the tree remained intact for the duration, Happy Chin having grown out of his habit of pulling bits off it and trailing around the house with them, blinking lights still attached.

Also a pleasant surprise was his behaviour around presents. He sat on his chair and waited beautifully for his turn. His brothers kindly allowed him to ‘help’ them unwrap a few of their presents, and the first gift he unwrapped – you guessed it, blue headphones – went down very well.

With Santa watching, behaviour had been pretty good on the whole. I even thought the ripping pages out of books phase had passed but sadly, on Boxing Day, with Santa having hung up his binoculars for the year, it resurfaced, resulting in the destruction of Mr August’s signed copy of Tasmania’s Treasures. High drama followed, and a ban of treats was imposed for the rest of the day. However, exercise still needed to be had, so Happy Chin and I went down to the beach for a walk. What could possibly go wrong? I’ll tell you – a man sitting on a bench with a can of Coke by his side, that’s what. Happy Chin lunged for the can, I intervened, and now have some lovely multi-coloured bruises on my arms. They go with nicely with the new top I got for Christmas actually. Poor chap! I don’t think he’d ever seen an adult man trying to gnaw off his mother’s arm in public before. He reached for his mobile phone (no doubt to call the police) whilst I advised him strongly to walk in the opposite direction – fast. With my best headmistress voice on, I then managed to convince Happy Chin to retrieve his kite and towel and marched him down the path to the beach, murmuring ‘sorry’ at the man over my shoulder. Really, what was I sorry for? It wasn’t my fault. People shouldn’t be allowed to sit in public places with Coca Cola. When I’m in charge there’ll be some pretty swift legislation to address this problem!

You’ll be pleased to hear that Happy Chin then settled down, put his chin back on and has been enjoying his holidays, as we have been enjoying his company. The latest endearing habit he’s acquired is the multiple costume change, Diana Ross style, in which the contents of his chest of drawers are emptied onto the floor in the search for the desired piece of attire. He also raids Mr A’s clothing, emerging last night with a jumper and beanie on (it was 29 degrees). Then he proceeded to the coat cupboard and tried on all the coats, including my black work jackets (size 10, a touch snug on a six foot fellow, but he was determined!)

I don’t really mind this new habit. There’s a lot of tidying involved, which would be inconvenient at any other time of year, but we are on holidays and there is time. We can also engage in a little learning as we go, discussing which colour T shirt he wants, and doing some sorting practise putting away clothes into the relevant drawers. When you’ve spent so many years trying to find some activity you and your child can share, even folding clothes becomes enjoyable.

Another great cognitive result is that he seems to have discovered how to play with toys. He found his old Mr Potato Head in the shed and spent a happy half hour putting it together in various Daliesque configurations. He also expressed an interest in the Lamington’s fishing rod and was very happy when he received one of his own for Christmas.

This year some new carers were introduced to Happy Chin, a few of them young men around his own age. He really enjoys their company, and has quite the Bromance going on with one of them, a young man who loves his job and finds the work much more fulfilling than working in a bar! One of the new carers has horses and Happy Chin is learning to groom, feed and care for them, another great interest. These young people have an energy that’s inspiring, and they are not afraid of Happy Chin. They fearlessly take him out to places where older hands (like myself) wouldn’t dare to venture. Sure, there have been hiccups, such as the recent decision by Happy Chin to shed all of his clothes on a bushwalk and refuse to put them back on. Another lowlight was the hurling of the house coffee machine against a wall. We swiftly went out and bought another. I mean, you can’t have a child who sleeps as little as HC sabotaging the only means of sanity at the carers’ disposal, can you?

Meanwhile, Tech Support has moved out of the parental home, exchanging one sort of chaos for another – he’s moved in with three other bartenders. It was time for him to go. He needed to get out into the world on his own and learn that other people can be just as annoying to live with as his family. In spite of numerous predictions that he would be back regularly for food and laundry services, he is rather cagey about his availability and can only rarely be tempted with lasagne, although curry does seem to make him appear magically, usually with a friend in tow. If I want to have a conversation with him these days, I have to go into the rather stylish bar where he works and buy a drink. It’s awful. Honestly, the things you do for your kids!

The Lamington is carving out a niche for himself by quietly getting on with his art. This year’s Christmas presents from him were carved, sculpted or hand stitched from leather and were a real treat to receive. He is off to Steiner School next year which is a very exciting development for him, especially as they offer Parkour on the curriculum (sorry, it’s Free Running, as the Lamington is apt to remind me, rolling his eyes).

And for myself, I am just happy to have made it safely through another Christmas. As I barrelled down a corridor at work last week, I failed to notice a colleague greeting me. I turned to apologise, telling him that I was ‘in my own world.’ He remarked that it sounded like a nice place to be. How wrong he was, I explained, it’s a place full of panicked last minute Christmas lists and clients who absolutely must have their quote/proposal/contract by the 23rd December, you wouldn’t like it one bit. I had gotten to the stage where all I wanted was a quiet room and a stack of dinner plates to hurl against the wall.

In fact, I’m thinking of setting up a travel agency specialising in sensory deprivation travel for working women. Frantic, Broke & Associates – we’ll find the cupboard you’ve always dreamed of crawling into! Forget the day spa – give me a mini break in a padded room with a custom made jacket with long arms. The red pill or the blue pill? Hell, just give me both! With any luck I’ll wake up on Boxing Day in time for the cricket to start.

How to tell if you’re ready

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A few years ago there was a fun piece doing the online rounds about how to tell if you’re ready to be a parent. It was full of amusing advice such as, ‘Go to the chemist. Hand the pharmacist your wallet and tell her to help herself,’ and ‘Buy a live octopus and a string bag. Attempt to get the octopus into the bag without any bits hanging out. You are now ready to dress a toddler.’

It got me wondering about how to tell you’re ready to parent a child with disability.

Granted, most of us don’t start out with this in mind. But then, I think we’d all agree that no one starts out on the parenting journey with a particularly realistic picture of what it will really be like. You can blame the Huggies ads for this if you like, but I think as a race we tend towards optimism, which has probably been important to our success as a species (although I’m afraid I can’t back this up with science as I paid insufficient attention during biology class at school).

But in the spirit of optimism, with a healthy dose of realism and (hopefully) humour, here are a few of my tips to get you ready to be the parent of a child with disability:

  • Forms: Pop down to Centrelink, or the Tax Office and get as many forms as you can (at least 45 pages worth is ideal). Take them home. Switch the TV on to the kids channel and turn the volume up to high. Sit down to complete the forms. You have 20 minutes – go!
  • Hospitals: Go to your local hospital. Find a doctor. Sit in her office and tell her your child’s entire medical history, including every medication they have ever taken, and the doses. Leave the office. Find another doctor and repeat the process. Continue until you have seen at least 12 doctors.
  • Out in public: Visit your local shopping mall. Wear only your underwear and a fluorescent orange clown wig. Ignore the stares of other shoppers. Complete at least one purchase without breaking anything you will then have to pay for. You are now ready to take your child to the shops.
  • Groceries: Go to the supermarket and ask to see the manager. Ask him to remove all of the products on the bottom 2 shelves, turn off the in store music and have all of the other customers leave. Now you’re ready to take you child supermarket shopping.
  • Laundry: Put every item of clothing and linen you own on the floor of the laundry. Put three loads of washing on before you leave the house. Go to work. Return home and put 5 more loads of washing on before bedtime. Repeat daily for 18 years.
  • Dinner: You will need a friend to help with this step. Prepare a nutritious meal. Serve the meal and sit at the table. Eat your own meal whilst pleading, at 3 minute intervals, for the friend to sit down and eat their dinner. After 15 minutes, have the friend sit down, take a forkful of food and sniff it. Then have the friend throw their plate on the floor and walk away. Retrieve plate and call the dog over to eat the dinner. After 20 more minutes, have the friend return and say ‘Ice cream’ repeatedly for an hour and a half. Give the friend ice cream. Pour yourself a large glass of wine.
  • Décor: Find someone whose house is messier than yours. Make them your best friend. Visit often.
  • Sleep: Get a second job in a nightclub. Drink coffee all day to keep awake long enough to go to work at night. Spend the night serving people and wiping up their mess. Finish work at 3AM. Go home and lie in bed waiting for the coffee to wear off. Get up and go to your day job. Drink more coffee. Repeat process until you forget you ever needed sleep anyway.
  • Stuff: Visit the homewares store and buy a dozen expensive glasses. Take them home and break one every two days. Return to the homewares store and purchase a dozen slightly less expensive glasses. Repeat the breakage process. Go back to the store and buy a dozen cheap glasses, take them home and break one a week until there is one glass left. Push it to the back of the cupboard with the other surviving bits of random glassware. Drink out of jam jars for the next 10 years.
  • Car travel: You’ll need a friend’s help with this step too. Learn the words to one Wiggles song. Get in the car at peak hour. Ask your friend to sit behind you. Give them a basket full of toys, preferably made of hard plastic. Drive for an hour, while singing the Wiggles song. Have the friend pull your hair and throw a toy into the front seat every 5 minutes. Retrieve the toy and throw it back each time while still negotiating traffic. When you pass a McDonald’s, have the friend attempt to exit the car. Grab the friend’s arm and hold onto it for the remainder of the journey. When you arrive at your destination, reverse park the car while still hanging onto your friend’s arm. Don’t forget to keep singing the song.
  • Frustration tolerance: Remove one piece from all of your jigsaw puzzles and rip the final page out of every book you own. Buy a cheap electric keyboard and glue down the G key. Leave the keyboard switched on from 5.30AM to 10.30PM each day. Take the battery cover off the back of every remote control in the house and throw away. Remove the batteries and push them under the couch. Scratch or chip every coffee mug you own (except the ugly brown one you got in the work Secret Santa in 2003).
  • Holidays: Find a house less than 2 hours’ drive away that isn’t near any shops, cliffs, deep water or neighbours with barking dogs or motorbikes. Make sure it is completely fenced in and has a working DVD player and melamine crockery. Book a holiday there every summer for the next 18 years.
  • Personal grooming: Make an appointment at the hairdresser for a full colour, style cut and blowdry. Ring all of your relatives to find someone able to babysit for three hours. Find someone who can babysit for 30 minutes. Drive at unsafe speeds to the salon. Ask the hairdresser to just give the ends a quick trim. Look through the Home Beautiful magazines and laugh like a maniac. Thank the hairdresser and tell them you’ll see them again in 12 months.

So hopefully that is all helpful as you embark on your journey. Obviously, there’s not the space here to cover everything you’ll need. I haven’t mentioned resilience, patience, hope and love. Your child will teach you these.

We Will Survive

boys-ringaroom

I apologise for the inactivity on the blog front of late. Full time work has been keeping me busy, as has turning 50 on the weekend.

Reaching a half century naturally gives rise to thoughts about what has been achieved so far and what remains to be done. There’s nothing focuses the mind as much as realising that you have already lived the greater part of your life. It leads you to think about the impact you can have in your remaining years, what you most want to do with them, and what good you can accomplish.

I always said when my kids were grown up I would try to help others who were bringing up children with disabilities. I’ve tried to do this by writing about my experiences. But I have never yet written about the Worst Years. It’s time I did.

I haven’t written about them yet partly because this blog is meant to be humorous. But mainly because I lacked the courage. I was ashamed to write about what happened to me.

Last month I went to a breakfast fundraiser supporting women affected by domestic violence. I met a woman who had grown children, a thriving career, who sat on several boards and who seemed to me the epitome of the successful professional woman. She confided that she had been the victim of domestic violence at the hands of her husband of thirty years. He had on one occasion broken her arm.

She shared that she had never told anyone about this as she was ashamed. Ashamed that she, a competent, educated, capable woman would ever allow anyone to humiliate her in this way. What sort of message would it send if she told the wider world? How could she hold her head up?

In most cases, domestic violence is inflicted upon women by their partners. Very occasionally, men suffer at the hands of women. And then there is the violence children inflict upon their parents (usually the mother). This is a real phenomenon. The Australian newspaper last year reported that 2013 cases of abuse by children aged 10 – 17 years had been reported to police in the 5 years from 2009- 2014. Substance abuse, mental illness, alcohol all played a part. So did disability.

Family violence is a complex issue. Children learn from what they see at home. We know for a fact that children who witness domestic violence at home are far more likely to become perpetrators themselves. Happy Chin had a flatmate who used to lash out at him regularly and who came from a troubled family background where physical violence was a regular occurrence. Who could blame him? He was severely autistic, confused and also a really sweet young man to boot.

We had to remove Happy Chin from the situation of course, and we did.

But what of the parent whose child is the abuser? Women whose partners are abusive can leave. It is often very difficult to leave, especially where there are children to support and bills to pay. There may still be love in the relationship, almost certainly there is fear, and control. I do not for a moment suggest that escaping domestic violence is easy. But in my case, I could not leave my child. In fact, society dictated that I should love him, even as he was blacking my eyes and pulling out handfuls of my hair.

Right now, all across Australia, mothers are cowering in their kitchens as their disabled children throw punches, bite, kick and scratch. Fathers, too, are regularly subjected to biting and clawing as they try to engage in the simplest of daily routines like getting their child dressed for the day. Carers know this. Any disability worker knows this and will happily trade war stories and scars with me. Who knew that an 18 year old girl with cerebral palsy could crawl out of her wheelchair onto the floor and lie in wait to bite her mother as she walked through the living room door? This happened regularly to a woman I know.

Another family I know have a 6 year old who one weekend cost them $6,000. She threw all of the television sets in the house to the floor because the sequence of the various DVD’s she was watching on each set failed to synchronise exactly as she required. She is 6! Imagine what could happen when she is fully grown.

For around 3 years we lived in a complete state of siege. Life had always been challenging with our eldest boy, but when he hit 15 matters escalated sharply. He would put his fist through windows. He’d scratch and bite our arms regularly (I have multiple scars that will never heal). For 3 years, no one could sit at the dining table with their back to the door as he would refuse to come and eat and throw objects into the centre of the dinner table, smashing plates and glasses everywhere. If he did consent to eat he would, without any warning at all, suddenly fling his bowl or plate to the ground or across the room. We dined off plastic plates for 3 years.

One day, he went on an absolute rampage, again with no warning, hurling mugs and glasses around the kitchen. I grabbed the 2 younger boys and fled to the shed where we locked ourselves in. 20 minutes later I nervously returned to the house to find complete carnage, shattered glass everywhere and Happy Chin bleeding from his hand where he had punched yet another window. He would not allow me to treat it, so I spent the rest of the afternoon sweeping up broken glass and wiping spots of blood off the floor where he had dripped it. I think I cried for about 3 hours. The younger children were told to return to their rooms and lock their doors.

Our younger boys lived in a state of lock down for 3 years. We received 3 nights a fortnight of respite.  The boys became very withdrawn and the Lamington, with his mild autism, struggled a great deal socially and mentally. One day I found Tech Support lying in the foetal position under his desk sobbing his heart out. He would not tell me what was wrong (afterwards he told me that growing up, he hadn’t wanted to add to our anxiety, so kept his own struggles to himself).

Happy Chin was always sorry afterwards, but I grew to hate my own son. More than once I struck him. “I hate you!” I would shout, with my hands wrapped round his throat. I fantasised about placing a pillow over his head and pushing. Luckily I was always able to restrain myself, or at least to walk away. Even walking away was sometimes impossible, as I couldn’t leave the younger children unprotected. I knew how dangerous it was for me to remain in a room with a child I was ready to harm, but what could I do? What must it be like for someone without any support, a single parent living in an isolated place? Or someone struggling with mental illness themselves?

The violence in our family just grew. A violent response to violence is a hopeless way to proceed. We knew it. You can’t hope to teach a child not to hit if you are hitting the child. But we were pushed way beyond our limits so often. Happy Chin slept only a few hours a night. We took it in turns to sleep on the couch to ensure he didn’t wander into his brothers’ rooms and wake them as he wandered around the house. He frequently would not sleep at all. We were both holding down daytime jobs (just), struggling to bring income into the house, all the while paying for constant breakages.  Desperate, we sought a group home for Happy Chin. We were at the top of a priority waiting list for 18 months. One worker told me privately that if we were truly at the end of our tether, our best bet was to ‘dump him’ in respite, simply drop him off and never come back.

We just couldn’t bring ourselves to do it. We were so worried about our other boys, but we couldn’t abandon our child, however ambivalent our feelings towards him had become. We just soldiered on, I would wear long sleeves right through summer so no one could see the bleeding, use makeup to cover the bruises, smile and try to be brave. After all, what could I tell people? “My son blacked my eye. But you mustn’t condemn him, he has a disability and can’t help it.” I did eventually steel myself to confide in workmates, braving the appalled looks on their faces. I didn’t really want sympathy, I wanted to forget all about home and use work as my respite. However, when you’ve been crying all the way to work and walk in 10 minutes late with puffy eyes and bleeding hands, even the most unobservant person will eventually twig that something is going on. And I had to fess up in case they thought it was Mr August doing the damage! Mr August, being a gardener, could explain the scratched and bruised arms by lying that he’d been pruning rose bushes.

Post neurosurgery we discovered that much of Happy Chin’s unpredictable behaviour was due to the large tuber on his right frontal lobe. The difficult teen years between 15 and 18 only added to the turmoil in his brain. His teacher did tell me that ‘by the time he gets to 18 you won’t recognise him.’ And she was right, he became our gentle giant. Now at 21 he is sweet and funny, occasionally disruptive but mostly very loving. His brothers adore him. They have had a tough time, I wish their childhood had been easier, but I could only strive to protect them as best I could. I could not even protect myself, only take the brunt and attempt to spare them. I don’t think they blame us, but perhaps they do. They’re entitled, that’s all I can say.

As for me, I got through and our family mended. If there is even one woman out there who is suffering the way I did, reads this and takes some hope, then it is worth having written it down. I am not a hero. I wished my own child was dead. What kind of mother wishes that? I hated myself every day, cried a lot and somehow just kept going. Who could I talk to, after all? Who else could possibly understand?

It took another woman to make me realise that unless we have the courage to speak out, a sister somewhere will believe that she is utterly alone or worse, has brought this on herself. And I can’t, through my silence, be complicit in that any longer.