DIY Love: Out of the Frying-pan Into the Fire

Regular readers might have been wondering what’s been going on in the self-love department since the last installment of DIY love (‘An Unexpected Journey,’ March 2018).

I am pleased to say we have not been idle and progress has been made!

For a start I have discovered that, in the pattern of all things technical, I should simply have gone to Tech Support for advice in the first place. Over coffee one Saturday the conversation turned to ‘cool things I’d seen online’ and wouldn’t you know it, he’d seen them already! Typical millennial.

You see, I had discovered the Fleshlight. For those of you who have been living under the same sexual rock as me, it’s a tube shaped device with a silicone lining meant to simulate the feeling of, well…an orifice. A soft, squidgy kind of orifice. On proceeding to the official website I made a number of startling discoveries.

Firstly:

There Are Lots of Naked Women on Websites for Sex Toys!

(I know, right? I was as surprised as you are. Most of the products are sponsored by actual porn stars. Go take a look yourself. Or don’t. Whatever).

Secondly:

Sex toys for straight men are really pink. They’re so pink I had to peer at the screen through my fingers. Honestly, it’s worse than the Barbie aisle at Toys R Us!

Thirdly:

Once you buy one, it’s not until you get it home and unpack it that you realise you need special sprays and wipes to clean it with which you THEN have to go back to the website and buy. What a rort.

Fourthly:

There are SO many different models, it’s mind-boggling. There’s even a stamina training model, for god’s sake! Choosing one reminded me of my last visit to the Telstra shop to get a new mobile phone (‘can’t I just get one to send texts and you know, call people?’)

Turns out Tech Support knew about the Fleshlight all along. Our conversation ran somewhat along these lines:

Me: I can’t believe you knew about this!

TS: I can’t believe you didn’t know about this!

Me: Why on earth didn’t you tell me?

TS: Mum, it’s embarrassing!

Me: I can’t believe you’re embarrassed talking about masturbation with your mother! Didn’t I raise you better than that?

Dear Reader, I bought one. The least pink one I could find. It looks just like a flashlight, it’s an innocuous black tube, but when you open it you get an eyeful of silicone orifice that is frankly rather alarming.

Which caused us to rethink our strategy.

I mean, if I had a willy I wouldn’t be putting it in there.

So it was back to the drawing board.

At this point I stumbled across a US Facebook page with a candid account of a mother’s attempts to teach her son to self-pleasure. She recounted stories of success using manual prompting. Many other parents responded with their stories, and some of their young men had to be helped because they were injuring themselves. We realised this was now much more important than simply teaching a fun new skill to while away a Sunday afternoon when there’s nothing on Netflix.

Shortly after this, HC came home on the weekend with carpet burn on his elbows, knees and ankles and bruising on his penis from rocking on the floor. This was serious. We had to teach him for his own safety.

Grasping the bull by the horns (if you’ll pardon the rather phallic metaphor), I sat down and wrote a social story. With help from our Coordinator of Supports, who was relieved only to be asked to provide Boardmaker images this time, and with photos of HC’s bed, we wrote a story with the key message that it’s OK to have private time, but not on the floor. The floor hurts. The bed is soft and safe. I took a picture of the lube, a picture of a hand, and a picture of his tissue box.  I even found an ejaculation symbol.

Then of course I needed to buy lubricant. Reasoning that lids would be fiddly, a pump pack seemed optimal but surprise! Not available at Chemist Warehouse. So online I went again for the jumbo one litre pump pack at $22.95 including delivery. Pleasure is an expensive business.

Tissues obviously needed to be up to the job, so it was off to the supermarket. Who knew you can’t get man-sized Kleenex anymore? They must have gone the way of the ‘Feed the Man Meat’ campaign. Either that or men’s noses have shrunk.

So with preparations now in place, we all read the story with HC.

Mr A then sat with him and showed him how to pump the lube into his palm and move his hand up and down. He pointed out the location of the tissues for cleaning up afterwards and left the room.

Happy Chin kept at it for a little while but not…how shall I put it? Not to the point of needing to use the tissues.

Cut to a few weeks later though, and our young man is starting to get the hang of it. His male carers have been extremely mature and supportive. One young carer, not much older than HC, really helped the process along by explaining patiently, ‘just move your hand up and down, keep on doing that, it will feel nice’ and then leaving the room. HC now calls masturbation ‘Up and Down,’ and tells his carers he’s off to his room for up and down.

So far the state of underwear and bed linen indicate that we haven’t achieved completion, but I have discovered a whole new set of expressions to use with his carers when enquiring about his progress.

‘How’s the up and down going?’

‘Do we have lift off?’

‘Can we pop the champagne yet?’

We have also tried adult magazines. It was my job to buy pornographic magazines for my son when Mr August mysteriously just ran out of time to do it. I stood in front of the naughty magazine section for a good 10 minutes (having taken care to visit a newsagency in a different suburb where I was unlikely to run into anyone I knew), dithering over the choices. Playboy was full of articles (again, who knew, right?) Penthouse seemed tasteful enough. Perhaps a bit too tasteful? Also, quite expensive. But Dirty Housewives at $5.95 seemed a tad inappropriate (as if I was in a position to judge!)

Unfortunately, due to the poor quality of the paper, Penthouse failed to arouse, as Happy Chin prefers the high quality glossies. He likes the look and feel of flicking through expensive magazines, also the way they smell seems to be a trigger for him. If only Vogue or Harper’s would do a sealed section. Time to write to Anna Wintour I think!

TSC Heroes

Mr August and I recently attended a seminar in Sydney organised by Tuberous Sclerosis Australia (a wonderful organisation and you can donate here https://tsa.org.au/). The room was full of individuals, parents, carers and professionals with lived experience of Tuberous Sclerosis Complex (TSC).

There is something incredibly comforting about being among people to whom you don’t have to say ‘it’s a neurological disorder that produces sclerotic growths on the brain, heart, lungs and kidneys.’ It feels like a big warm hug.

I was asked to deliver a brief parent overview which seemed well received. It’s very difficult to stand up in front of a group of strangers with mostly younger children and resist the temptation to say, ‘don’t buy any expensive glassware, you’ll regret it later!’

Because Tuberous Sclerosis is so variable. You can go for most of your life and never know you have it, which is why I refused the pre-natal screening test that had become available when the Lamington was still in utero. I mean, what a choice to make! A woman carrying a child with a genetic disorder has an agonising time of it, and I certainly don’t wish to trivialise any person’s experience of TSC, but there truly is such a massive variation in lived experience. TSC can make a huge impact on lives, or a more subtle impact. Areas that one would think are unimportant can be a huge pain in the ass for the person affected and their family. Each person is so different. To paraphrase one of the presenters, ‘If you’ve met one person with Tuberous Sclerosis, you’ve met one person with Tuberous Sclerosis.’

Anyway, back to the seminar. It was about TAND (Tuberous Sclerosis Associated Neuropsychiatric Disorders), which is a term developed to diagnose, understand and better treat the array of neuropsychiatric challenges that come with TSC. These challenges include autism, ADHD, anxiety & depression, aggressive behaviour, learning difficulties and so on. It’s quite a long list. In fact it’s such a long list that I felt glad we hadn’t known about all of this when Happy Chin was born. I also felt a deep respect for the parents in the room with younger children, or newly diagnosed children, who were absorbing all of this information with interest and (it appeared) equanimity. HC was born long before Google, before the internet even, so we couldn’t jump online and scare ourselves with the array of symptoms this complex disorder can present.

On the other hand, we also couldn’t jump online and help ourselves (and him) with information. We could have gone to the library I suppose, although I doubt there would’ve been anything in the medical shelves about TSC! There was a hospital brochure but it was pretty vague. So we just muddled through and hoped for the best.

How different things are for new parents today!  It’s so heartening to hear about all of the new treatments available or at research and development stage that will dramatically improve the lives of people diagnosed with TSC. We have first hand experience of how fast developments in medical science are happening. After having been told in 2006 that neurosurgery for Happy Chin was not an option, a successful operation was performed in 2013. The technology had improved, neurologists could pinpoint seizure activity, and remove the tuber that was the source of that activity.

Outcomes for babies born today with TSC are so much brighter, and we were fascinated to hear about research in Europe which suggests that an EEG performed in newborns with TSC can detect abnormalities before the onset of seizures, and treat the baby right from the start, hopefully reducing seizures or even eliminating them occurring in the first place. What an amazing developmental gift this could be for a young child!

mTOR inhibitors (medicines which control cell growth in the body and therefore inhibit the growth of tumours) are another exciting and quite new development, with one drug, Everolimus, looking set to be added to the PBS this year. Our young man started on rapamycin (another mTOR inhibitor) this year, and we are seeing great results with his facial angiofibromas.

Professor Petrus de Vries, a visiting academic from the University of Cape Town, gave an engaging and informative presentation about TAND. During the afternoon sessions, he invited input from the audience about treatment options here in Australia and it was valuable to hear strategies other parents were using and services they’d been able to access.

We came away with a great sense of hope for the future.

Every day can seem like a burden, we can become overwhelmed by the constant medical appointments, behaviour specialist meetings, NDIS planning, actual day to day physical care of your child or family member (not to mention your other children), your relationship plus your paid work if you are employed.  You’ll notice I don’t mention housework as I hate it and as you can see, really don’t have time for it anyway (does anyone know of an organisation that provides trustworthy volunteer cleaners? Actually, don’t worry about the trustworthy part, Happy Chin has broken everything of value we ever owned so we’ve got nothing worth stealing!)

But in a room with a group of parents, carers and people who live and work in TSC, I couldn’t help but feel a sense of purpose and pride that we were all working to make lives better for our loved ones. Human beings like to feel they’re a part of something bigger than themselves, and working away at the coalface in your home or school or lab can feel like a very tiny, solitary thing to be doing. But get us all together and look at what we can achieve!

Unpacking TAND and all of its complexity gave such an understanding into the complex brain patterns of our person with Tuberous Sclerosis. Thank you to the TSA for organising such a great day. I’ll be feeling much more charitable the next time Happy Chin chucks my Stephanie Alexander cookbook across the room.

 

 

 

Personal Worst

Happy Chin seemed determined to achieve his personal worst today – slowest morning routine by a 23 year old in the Greater Hobart area.

I could tell it was going to be One of Those Days when I detected the strong smell of urine in his room. The smell was so overpowering I failed to sniff out the dog poo on the rug and promptly stepped in it. We have a new puppy called Dave and he is a poo machine. He views Liam’s room as his ensuite.

So, wet sheets (which holds us up by at least 20 minutes) and then dog poo to clean up. Excellent.

I coaxed HC out from under the nest of bedclothes, last night’s leftovers and a Union Jack flag he’d got from god knows where, to discover he’d taken his cherished red cotton sheet to bed last night. It was now soaked in urine and naturally, he wanted it right away.

Swiftly negotiating the first compromise of the day, said sheet was whisked away to be washed, with the promise we would take it with us and hang it out to dry when we got to his house.

Happy Chin was then lured into the shower by means of a handy Bluetooth speaker playing his favourite band, the Doves.

Phew! I deserved a coffee after that. Two sips in and I heard HC shouting ‘Oh no!’ Bolted into the bathroom to discover Bluetooth speaker had fallen into the sink, HC had picked it up and was standing under the shower with it. Excellent.

Briefly considered snatching it out of his hand but opted instead for compromise two of the morning, turning off the water and spending the next five minutes negotiating return of the speaker after personal ablutions were completed.

Phew! Returned to coffee which was now cold.

On exiting the shower, HC then decamped to the laundry where he stood in front of the washer demanding the return of his red sheet. I patiently explained about the clever numbers that tell you how long until the wash is finished. He was unimpressed.

He consented to drink his hot chocolate but we hit a sticking point with breakfast, where I failed to convince him to eat avocado toast (he is a millennial, why would he refuse avocado toast?) He proceeded to the couch, pulled a blanket over his head and left me staring down the barrel of a stand-off.

This behaviour is fairly commonplace when he doesn’t want to do something. I wish I could just retire to the couch and pull a blanket over my head every time I didn’t want to do something.

However.

I now faced a problem – how to get him off the couch and into the car without injury to any person, object or hapless pet straying into the vicinity hoping for dropped bits of toast?

Aha! The washing machine will beep when it’s finished! Surely the prospect of a clean sheet will get him to his feet? I then simply have to shepherd him out the front door quick-time. How hard could it be?

I dried my hair and dressed for work with the quietly confident air of a woman who has risen to the challenge.

But wait, don’t they say that pride comes before a fall? Or don’t count your chickens before they’re hatched? Or is it – you think you’re so smart but your child will defeat you?

Returning to the living room to find said child pretending to be asleep, I exclaimed excitedly ‘The washing’s finished! You sheet is ready!’

No response.

I removed the blanket. He rolled over and buried his face in the cushions.

So then I tried, in order: tickling, attempted manipulation of legs onto floor, bribery, Santa-is- watching, pleading and begging.

By this time he was fully awake and pretty annoyed.

Suddenly he hopped up, pointed out the window and said ‘jet ski!’

Happy Chin loves to look out the window at the river during summer and watch the jet skis going past. There were no jet skis at 8.30 on a Tuesday morning.

Hell, I can’t just produce jet skis! (Although at a recent seminar I met a mother whose son loved thunderstorms and expected her to produce them on demand. This made me feel much better. I mean, a jet ski is easier to produce than a thunderstorm isn’t it?)

I could, however, promise jet skis on YouTube IF he got in the car right NOW (compromise three).

After a bit of faffing about picking up magazines, the flag, the wet sheet and two other sets of sheets for good measure, we finally set off. During the 30 minute journey, Happy Chin entertained himself by alternately listening to music and passive/aggressive swinging of the speaker by its handle while saying ‘no throw.’

I entertained myself by imagining in vivid screaming detail the total nervous breakdown I’d have if any cop pulled me over for speeding.

Really, it’s no wonder I arrive at work with a brain as soggy as the Lamington’s two day old Weetbix! On mornings such as these, I often find myself unable to make the most basic decision. Coffee or tea? Biscuit or chocolate? Valium or Serapax?

When the phone rings at work on a morning like this, I find myself praying that it won’t be someone with a problem because I JUST CAN’T….

Conversations among normal people about their normal everyday problems fill me with a seething rage that is also kind of envy. Oh, to have these people’s problems! I often think about the Dad I met an autism seminar who put it perfectly – everyone else is talking about how they went skating and you spent the weekend wiping poo off the walls.

Of course, I know very well that everything is relative and also, many people have far worse problems than mine. As frustrating and exhausting as caring for HC can be, my son is not dying. In fact, he’ll probably be around to torment me for a good long time, provided the tubers in his brain stay fairly stable. Nor does he need the kind of round-the-clock, sheer hard yakka type of care that many people with disabilities do.

I am really very fortunate to have had him in my life to teach me patience, resilience and resourcefulness.

Just don’t tell me that at 9AM on a Tuesday morning. Not unless you have a large double shot latte standing by. And maybe a gluten free chocolate brownie as well?

The Hat Police

 

Yesterday the Lamington added a new duty to my job description – I am now the Hat Police.

This came about because he discovered his favourite baseball cap on top of Happy Chin’s head instead of where it rightfully belongs, on his bedroom floor.

“Mum, can you please make sure he doesn’t wear my hat?” came the exasperated cry.

“Oh, sorry,” I said, knee deep in laundry and breakfast dishes, “I didn’t realise it was your hat.”

Two days later I finally had time to stop and think – hang on, why the hell should I be sorry? How come I get to be the Hat Police? I don’t have time for this.

Last week, I was the Mug Police. Apparently there are several mugs in the house that no one else except the Lamington is permitted to drink from, especially not people like Happy Chin. Maybe the Lamington is worried that Tuberous Sclerosis is catching (note to self – schedule a Genetics 101 refresher with him, once the laundry’s done).

Kids pinch each other’s stuff in every family. I refer to the Cambridge English Dictionary’s definition:

sibling noun /ˈsɪb·lɪŋ/

a relation who enters your room unauthorised and takes your stuff

 

They annoy each other, they fight, dob on each other and claim unfair and unequal treatment from the parental unit all the time. This is normal.

Why should I get involved? Wouldn’t the normal parent thing be to simply ignore it, tell them to sort it out themselves and only intervene if there’s claret spilled?

Well, yes it would, but we are not a normal family (as regular readers may have noted). I’ve always intervened because at heart I feel guilty about the childhood the younger two have had and I want to make things better and easier for them somehow.

Let’s imagine for a moment their elder brother didn’t have a significant disability. What would I have said? Probably something along the lines of ‘Suck it up Snowflake. And by the way, are they his Dr Dre’s I see there on your head?’

In actual fact, during the most difficult years I was so exhausted I often replied to complaints about petty theft with variations on a theme of well-why- didn’t-you-hide-it-better-if-you-didn’t-want-him-to-have-it?

Thus, Tech Support and the Lamington have become Jedi masters of hiding stuff. They both have lots of secret squirrelly places in their rooms, locked chests and boxes of various shapes and sizes. They know that if they consume cola at home, it must first be decanted into a non-transparent, non-cola branded receptacle (and in utmost secrecy, preferably huddled in the pantry or broom cupboard, like an alcoholic filling their water bottle with vodka). They are also across most of my secret hiding places for chips, chocolate and bananas (yes bananas, cos if you put out 9 bananas HC will eat the lot). We are so sneaky that we are still finding stuff we hid back in 2013.

Frequently I’d just shrug my soldiers and explain that we were living in an anarchic social system and that all property is theft.

As you’d expect, my wildly inconsistent parenting really didn’t make life easy for the younger boys. Neither did it make things better for Happy Chin, who badly needed firm and consistent guidance. I knew it, and felt guilty about it but, as I’ve written elsewhere in this blog, I was just too damn tired to address the problem.

When I was feeling strong, I would use negotiation. Trying to grab the object and hide it at speed had proved effective at times, but a high risk activity. If you couldn’t run and secrete it quickly enough, or pass it on to a third party to be hidden, then you were very likely to be bitten or scratched.

Negotiation was slow, but often worked. On several occasions the item was returned voluntarily (usually in exchange for some negotiated treat or privilege). Problem was, it took about 20 minutes and you had to devote yourself entirely to the job, you couldn’t wander off to stir the dinner or the cause was lost.

Getting HC’s brothers to use negotiation was an abject failure. Their favoured method was always to shout for me, grab the item and then slam the bedroom door in HC’s face and lock it. This left me standing outside the door with an irate Happy Chin, waiting for him to pick up the nearest heavy object and hurl it at me.

So it’s no wonder I’d often just say ‘Give him the bloody hat already. You’ve got 17 others for god’s sake!’

So what is the point of this post? The point is that I’ve spent much of my life as a mother trying to make everything all right for everyone. And I couldn’t make it all right, not for a long time. So now I’m trying to make up for all those years where it wasn’t all right by agreeing to be the Hat Police.

Is that it? Have I unpacked my maternal psychopathology? Thanks for listening, you’ve been great. Shall I just pay the receptionist on the way out?

I Quit

 

Lately I’ve been thinking about quitting my job.

I took a straw poll around the office the other day.

‘What are the main reasons people leave their jobs?’ I asked.

According to general consensus the main ones are – unhappiness in the position, the money’s average, difficult relationship with the boss, poor working conditions and lack of career development.

Well, my current job qualifies on all those fronts. In fact, sometimes I wonder why I ever thought taking a job as a Mum was a good idea.

For a start, I never even saw a job description, and I assumed from the TV adverts that it’d be a doddle. The babies always seemed to be either asleep or doing really cute things whilst Mum, Dad and the family Labrador looked on adoringly. How hard could it be?

There was no training to speak of, although I was told there were several helpful books I could read during my downtime, not during company hours. Turns out company hours were 5AM-11.35PM Monday to Sunday, lunchbreaks were to be taken at my workstation and I got 4 minutes of (supervised) toilet breaks a day. I asked about annual leave but this was apparently not offered in the first 5 years. There was no sick leave either and even when I injured my leg recently, I was told light duties were ‘unavailable.’

It’s fair to say I didn’t take the job on for the money. At around 5 cents an hour, wages were well below Fair Work standards. Occasionally I could supplement my income by turning out the husband’s pockets before doing the laundry, but this cash would inevitably be reallocated to lunch orders. The annual tax refund was usually spent at the Uniform Shop.

And the workload! It was bad enough when I just reported to the Senior Partner. Honestly, he couldn’t do a thing for himself – couldn’t even wipe his own bum! When the Junior Partner came on board, he proved to be quite personable and not as demanding as the Senior Partner, but I still had to do all of my original work plus the new duties as well. Eventually there were 3 partners, and they still didn’t put anyone extra on to help me! Talk about unfair working conditions!

I’ve gotten used to being expected to perform tasks that are outside my skill set. If I’d known this role would require it, I could have undertaken prior training as a doctor, nurse, medical administrator, laundress, careers counsellor, seamstress, caterer, driver, UN negotiator, personal assistant, artist, milliner, driving instructor and physiotherapist. It’d look good on my CV.

Similarly, although I am happy to be a teacher, I am not A Teacher. I can’t do maths beyond grade 6, so forgot about this helping with homework business. I’m probably qualified to help with English homework, but my assistance with Maths or Science guarantees a one way ticket to the big F.

Working conditions in this role do leave a lot to be desired. A safe working environment really doesn’t seem to be a priority in this organisation. I’ve often find myself juggling hot pans and sharp knives with my employers unhelpfully crawling about underfoot, emptying the Tupperware cupboard directly in my path. And many’s the time I’ve suffered a Lego-related injury when walking barefoot through a bedroom at 3AM. Company birthday parties have frequently gone ahead despite obviously unsafe carer to child ratios. The Senior Partner’s 5^th birthday, when the PR department thought it was a good idea to invite his entire class, springs to mind. I seem to recall having to take the afternoon off on stress leave after that function.

Career development opportunities seem non-existent. I’ll probably just have to quietly serve out my contract until the 3 partners have left, when I’ll be quietly demoted to a part time role doing the occasional load of laundry and rediscovering old hobbies like reading a book uninterrupted and spending my disposable income on cosmetics. I only hope that skill set hasn’t deserted me, it’s been a while.

On the whole, I have a fairly good relationship with my employers. Provided I keep the food coming, dispense cash on a regular basis and resign myself to the (sometimes daily) performance reviews, we get on all right. And I do appreciate the annual Mother’s Day ‘Year in Review’ card, complete with handmade gifts, cold tea and burnt toast. There’s no doubt they mean well. I just wish my KPIs weren’t quite so unrealistic – my boys really know how to set stretch targets. Apparently I have to cook a meal they like every single night, let them play as many video games as they want AND not get upset at the state of their rooms. I must also ensure the Wi-Fi is never down, the Netflix subscription is up to date and the pantry has food in it they want to eat. If I fail at this last duty, I am treated to heavy sighs from P1, 2 and 3 while they stand in front of the open pantry looking glumly at the contents, a performance that’s often followed by heavy sighs (mine) while standing in front of the fridge looking glumly at the lack of wine in there.

For the most part, I am philosophical. After all, I took the job on. It seemed like a good idea at the time and it’s fair to say that the opportunities for personal growth have been, well, continuous. In fact, I’m not sure I can grow anymore – is there a peak for character development, and once that peak is reached your body just excretes the unnecessary character, like too much Vitamin C? I’ve also acquired almost superhuman frustration tolerance levels, but I’d be quite happy to drop down a notch or two and just be able to have a massive temper tantrum when things don’t go right, just like my employers. And then storm off to my room, slam the door and refuse to come out for dinner.

I wonder how that would go? Maybe I’ll get the sack. Think I’ll try it out tonight!

Dithead

 

Really wishing we’d never taught Happy Chin to say dickhead.

Well, we didn’t actually teach him, it just slipped out one day during a man scaping session in the bathroom. HC is mostly resigned to the shaving and hair cutting process by now, but is still very happy to throw in loud objections during proceedings. Still, that’s better than throwing punches like he used to do.

He also refuses to stand still, which regrettably led to the parental exclamation of, ‘Stand still and don’t be a dickhead!’

We’re only human, you know.

And that’s where Dithead all started. Happy Chin can’t say dickhead, he pronounces it ‘dithead,’ and it’s a source of tremendous mirth. He can go on for hours just wandering round the house saying ‘dithead, dithead’ while laughing his head off. I wish I could say it was endearing.

We’ve developed an after-dinner evening routine, he and I. Once the dishes are cleared, we go upstairs to the parents’ retreat, put on some quiet music and sit there enjoying each other’s company and looking at books or magazines. We watch the sun set, have a hot drink and he lets me know when he’s ready for bed.

Well, I had an hour of Dithead last night and I can tell you it doesn’t go well with Sigur Ros. Normally I let him dictate his own bedtime (he’s 22 after all) but last night I had to call it. I couldn’t endure any more Dithead.

This morning I’d hoped we could start afresh, but Dithead was up before I was and ready for action and we had Dithead all the way down to drop off in the car. Just when I thought it had stopped, a car cut in front of me and I shouted ‘You total dickhead!’ and we were off again. Shit…I mean crap…I mean sugar.

Seriously though, how are we to respond to Dithead – any suggestions from the floor? What rude words do you wish you hadn’t used and now can’t get rid of? How are you meant to stop from laughing?

Especially when your child indicates he’d like a helium balloon for his birthday and further, tells you specifically that he wants a ‘Dickhead Balloon.’ How the hell am I going to walk into the party shop and ask for that? Or should I be going to the sex shop? (Hang on, that was last installment wasn’t it? Maybe I can combine the two errands!)

The most simple and obvious answer is to stop swearing ourselves.

OK, next suggestion?

Asking him to stop saying it only makes him say it more. Ignoring the behaviour (through gritted teeth) only makes him do it more. He can tell when we’re resolutely trying to ignore him, he can smell our fear, he can see through walls, he can withstand long periods of attention deprivation. In short, he is super human and he can break us. And he knows it.

Maybe we can teach him to swear in another language, one that his carers don’t know. Urdu, maybe? We’d have to avoid Indian restaurants, but that’s OK. There’s always takeaway.

When we ran our home program, we used joining as a technique. Instead of trying to stop Happy Chin in his repetitive behaviours, we joined him and in doing so created a vital connection. We could then go on to learn and teach together. So maybe the answer is to run around the house shouting ‘Dithead’? I’ll let you know how that goes.

I’m old enough to remember a time when we were threatened with having our mouths washed out with soap and water. But after 23 years of cleaning HC’s teeth (and many broken toothbrushes), I don’t really fancy trying to stick a bar of Palmolive Gold into his gob. Not without Teflon gloves, anyway.

In my quest for answers (and, let’s face it, material for this blog) I naturally turned to The Internet, where I found a handy article with several useful tips.

1. Set and live the standard.

We have standards in our house, it’s just that they’re not very high. This enables us to get through life with some small sense of achievement. For example, no child is ever allowed to skip breakfast. Unless, you know, reasons. In which case – Up & Go!

2. Help find better ways to express emotion.

I can definitely find these, and model them too. In the past I’ve: banged my head against the wall, shouted, cried, begged and threatened to put my hand in the blender. None of these were given as examples in the article, though, not sure why…

3. Find appropriate replacement words.

Well, I tried www.thesaurus.com , but strangely they didn’t list dickhead as a word.

Wanker, maybe? It’s not really any better. Richard Cranium? Too long and difficult to pronounce.

4. Don’t overreact.

Listen dickhead, you try being at home for 12 hours straight with a child who has said ‘coke’ 250 times in the past 2 hours, and you know that because you counted, because the only way you can stop from going stark, staring mad is to count the number of times he says it and then repeat the numbers back to him, like some kind of deranged talking clock!!

Oh, sorry, was I overreacting?

DIY Love – An Unexpected Journey

 

Life’s full of surprises, isn’t it? I mean, who can predict what will happen to you? It seems like only the other day we were toilet training, and now we’re teaching a grown man to masturbate. Who’d have thunk it?

Actually, we really should have thunk it. It stands to reason that since we had to painstakingly teach every other skill, this one should be no exception. It just isn’t something I ever saw myself doing.

But sorry, I do apologise, you’re probably still scraping your jaw off the floor. I didn’t mean to startle you. Let me give you a bit of background. If you’re not up for that, you can always close your browser now and come back next instalment where I’ll address a slightly less controversial topic (maybe).

Right, are you sitting comfortably? Let’s begin.

We probably all agree that the giving and receiving of sexual pleasure is a wonderful gift and one that shouldn’t be denied to anyone. It’s a basic human need. People with disabilities have as much right to explore their own sexuality as everyone else.

As our Happy Chin grew into a man, Mr August and I discussed what sex would look like for him. Although we’d have loved to be able to imagine a future with someone special in his life, we didn’t really think in the short term that he would develop cognitively to a level where he could manage the complexities of an intimate relationship with another, or that this was even something he would want.

We knew that this might change in the future, but we had more pressing concerns in the here and now. Sexual release was more important for our young man than pipe dreams. And therein lay the problem – Happy Chin is only able to achieve limited sexual pleasure by rocking on the floor on his stomach. This feels nice to him but doesn’t get the job done. Very frustrating for him, and probably an additional source of behaviour problems (like we really need anymore of those!)

Why not turn to a professional? We discussed the possibility of using sex workers fairly early on. But it seemed a huge step to take given that we had no idea whether our boy wanted to be touched. How could we assume that what would feel nice to us wouldn’t feel invasive or unwanted to him? I had the opportunity to explain this to a professional at a recent disability conference. She assured me that a trained sex worker could instruct rather than participate, but we felt that this might be a bit too much as a first step.

Maybe it was better to start with the basics, we reasoned. It made sense developmentally. I mean, you gotta crawl before you can walk, right? A teenaged boy needs to know how to masturbate.

Right, so. We’ll teach him.

Erm…how?

A quick scan of the library shelves ruled out the possibility of a book on the subject. So we’ll make a book! At the time, HC was doing the So Safe program and we were teaching public and private behaviour, so a social story was produced about when and where it was OK to touch yourself, featuring Boardmaker illustrations (who knew they had an erect penis one?) and it proved highly effective. That is, it proved highly effective at teaching Happy Chin to shut the bedroom door. Unfortunately it didn’t provide any actual instructions on what to do once the bedroom door was shut.

Next step, DVDs. Now, before you think we were downloading porn for our teenage son, let me tell you about a film called Hand Made Love. Yes, really. It’s a helpful US production that features a male actor demonstrating how to masturbate to ejaculation (it also features some homo erotic pencil drawings of naked men with a tasteful acoustic guitar soundtrack at the beginning, which really added to the awkwardness of my viewing experience, but hey-ho). Family Planning had a copy they were willing to loan us. Hopefully if Mr A or a male carer watched it with HC he would get the idea.

So the DVD duly arrived in a plain brown envelope, which sat on our kitchen bench for a week. No one had had the time, opportunity or, let’s face it, inclination to watch it. It’s Friday night, what shall we watch to go with our takeaway pizza? I know! Yeah….no.

Then one day HC and I happened to be tidying his room. Since we were both there and the house was quiet I thought, why not? It might as well be me. So I opened the envelope. An extremely good looking shirtless man was on the front cover. Awkward! This was going to be even creepier than I thought. I was quite willing to woman up and watch a man masturbate, but a hot young man? With my son sitting right next to me? This was getting into a level of wrongness I was struggling to cope with.

This is not about you, this is not about you, I repeated to myself as I slid the DVD into the player.

Well, luckily it turned out to be a different guy. A perfectly normal looking, ordinary guy who helpfully explained (and demonstrated) the entire process. It was very well made, taking care to point out the importance of being private, of feeling safe, of pleasure as a positive and natural thing. The tone was soothing and educational without being voyeurish.

And what did Happy Chin think of it? He couldn’t have been less interested. All he wanted to do was put his shoes on and go in the car.

Of course, I may have put him off a bit by making comments like:

‘Oh look, he’s using a magazine, you could do that’ while handing him a copy of Vogue.

And, ‘See how he’s cleaning himself up after, you could use your tissue box right here for that.’

And so on.

Dad duly had his turn and one of the male carers also volunteered, but no luck.

Unsurprising really, HC just doesn’t learn by watching others. We know that. He needs step by step instruction, preferably with visual aids. Expecting him to learn to masturbate by watching an actor doing it would be like expecting me to be able to fly a plane after watching a Tom Hanks movie.

So, back to the social story. All we needed to do, we reasoned, was make a social story with actual pictures demonstrating in great detail exactly what to do (Boardmaker images not being anatomical enough for the purpose). So our Coordinator of Supports, who is an absolute godsend when it comes to social stories, went on an internet search for said images, much to the amusement of her co-workers (work tip – don’t get onto Google images and type in ‘erect penis.’ Apparently her strangled cries caused her colleagues to think she was having a heart attack.)

Across town in my office, I received emails from her asking me what I thought of the attached images. Well, thank god for firewalls is all I can say. Really hope my work IT department don’t decide to have a close look at my browser history anytime soon.

The social story idea was beginning to feel like a bad one. You can’t really ask people to go trawling through porn on your child’s behalf. Plus, what if the pictures we chose didn’t look anything like HC? I mean, they come in all shapes and sizes, don’t they? Would it even really matter? So many questions you can’t ask your mother!

So technology to the rescue again! Apparently there is a shower device you can buy which fits around the object in question and….well, I don’t actually know what it does. I assume it’s a kind of male vibrator. I couldn’t open the link because I was at work. I have no idea how expensive it is, which should lead to a very interesting conversation with the NDIS. Followed by another interesting conversation in which I ask if there’s any funding for a larger hot water system to be installed at HC’s home, seeing as how we know where he’ll be spending all of his time.

Seriously wonder if they make a hot water heater with that kind of capacity. Should lead to another interesting conversation with Rheem.

What Could Possibly Go Wrong?

The day had started so promisingly.

Happy Chin was content to be going back to his house, looking forward to seeing his favourite carers again after a 3 week Christmas break, and pleased that we were stopping on the way to pick up his iPad (screen cracked…again!)

I was happy to be going to work and have a break from the caring role for a bit, after nearly 3 weeks of relentless Christmas craziness. We got in the car and rocked into town listening to Triple J, found a car park not far from the iPad shop and sallied forth.

Five minutes to nine – shop shut. Never mind, said I, let’s pop along to Target, you need new socks don’t you?

‘Socks!’ replied a delighted Happy Chin, who just loves socks.

Naturally we couldn’t get through the Target checkout without acquiring a small bottle of coke at 9 o’clock in the morning, but hey-ho, at least he’d had breakfast and brushed his teeth. I never said I was a good parent.

So far, so good. Now it was off to the iPad repair store where we fronted optimistically up to the counter to collect the device.

What could possibly go wrong at this point?

‘Um, just give us a minute to find it,’ said the man.

So we gave him a minute. In fact, we gave him fifteen. By minute 12, all 3 shop assistants were searching fruitlessly for the iPad. HC was entertaining himself by pacing about the shop, the coke in his bottle rapidly diminishing. My heart was sinking at roughly the same rate as the coke level.

‘Can you come back?’ enquired Shop Guy 1.

‘No, you stupid man,’ I replied, ‘we had a very short window to accomplish this errand, a window which is rapidly closing. Any minute this young man will want another coke, I don’t have one, he’ll probably run out of the shop onto Collins Street and I’ll have to chase him. Added to that, I’ve been telling him all morning he’s getting his iPad back, and I’ll have to take him to Kingston without it and he and his carers will endure a week of hell. And I am now late for work thanks to you – get your act together!’

I didn’t actually say all of this, I only thought it.

What I did do was politely explain why we needed the iPad urgently, suggest they loan us one until ours could be found and when that suggestion was rejected, agree to pay for the iPad repair and they could courier it to HC’s house.

At this point my card declined. No worries, I said, I’ll just quickly transfer money from the joint account. Using my mobile phone. Which I’d left in the car. No worries, I said, I’ll just nip along to the bank.

I grabbed Happy Chin by the hand and exited the shop. He was confused by this sudden change in schedule – no iPad, Mum visibly tense – and I sensed his agitation, poor young man. So I abandoned the entire mission, opting to get him to his home and sort the whole mess out by phone later.

We arrived at the car to find a parking ticket tucked under the windscreen wiper. A $130 repair job was now going to cost us $170. Talk about the hidden costs of disability!

Throwing the ticket in the centre console with the broken CDs, random coke lids and crusts of HC’s morning toast, I gunned it to Kingston, cursing all the way.

So it was no surprise after arriving 40 minutes late to work and proceeding with shaking hand directly to the office coffee machine, that I would drop the milk frothing jug, drenching myself, the office fridge and two square metres of carpet in milk.

I literally stood there for about a minute. My co-workers jumped up to help, no doubt thinking ‘Why is she just standing there? Why doesn’t she clean it up?’

I was pondering the injustice of life, that’s why!

Lately I’ve found myself pondering the injustices that affect the lives of people with disability and those caring for them every day. At a recent dinner I was chatting with a group of parents about bits of paper. You know, permission slips from school, parking tickets, rates notices, that kind of thing. The sort of paper that our children all seem to love picking up and carting about with them, gnawing on them, taking them to bed and weeing on them or simply dropping them in some random place where everyone forgets about them. Until that letter from Department of Transport comes 3 weeks later announcing that you now owe twice the amount of the original fine for not paying on time. It’s really not very fair, but you try explaining to the Department of Transport that your autistic child ate your parking fine. It’s not going to work, is it?

We always miss footy colours day at school because Happy Chin has carted off the notice from school, the Lamington and Tech Support returning home to complain about missing out on the sausage sizzle because they didn’t have $2.

And what’s with the forms? You can see from the above anecdotes that giving us bits of paper is a Very Bad Idea, so how come we get twice as many bits of paper to fill out as every other person on the planet (by ‘we’ I mean the parents and carers of people with disability in general, not just our family)? We’re also some of the most time-poor people on the planet, why are you giving us a 29 page form the week after we just filled out (or lost) the last 29 page form you sent? How is this fair?

Don’t even get me started on home repairs. Regular readers will know we are very friendly with our local glazier, electrician and computer store and will soon embark on an intense and probably life-long relationship with a NEW iPad repair store. However, we are financially much less well equipped to cope with funding these lovely people’s overseas holidays, due to a lifetime of part time and casual work, turning down promotions and having to take unpaid leave because we’ve used up all our sick leave on the times respite called us to come and collect our child (again).

And why is it that the people who are most afraid of hospitals (i.e. our children) get to spend the most time in them?

I do realise that these are not all problems with solutions, they are just The Way Things Are and probably complaining about them is not doing any good and I would be better off using my energy doing something more useful, like making dinner, but I’m on a roll so you’ll just have to bear with me. Or, you know, log off and go make dinner yourself. I mean whatever.

But The Way Things Are is so unfair and really sucks and mostly no one knows just how sucky it is for us. Even the little things are incredibly hard to do. It’s so tiring to have to plan every shopping trip like the Dunkirk evacuation, and for 22 years! To have to walk around shopping malls casing every risk, scanning every shopper for a trolley with coke in it, like a secret service agent on the alert for the moment you’ll have ‘remove the principal.’

So, now that I’ve had a rant, here are my suggestions:

• iPad repairs should be government subsidised and technicians available to make house calls.
• A central register for discarded or donated iPads and other technology should be set up so people could purchase used iPads and other devices cheaply or for free.
• Parking fines should be discounted for people with disability, and instead of parking tickets we should receive SMS reminders to our mobile phones when we receive a ticket and again a few days before payment is due. People with disability and their carers should have overdue fees waived.
• Forms should all be online, no paper. And maximum of 2 pages.
• For home repairs, I have a vision of a charity organisation that recruits retired plumbers, electricians and general handy people on a volunteer basis to pop round and effect basic repairs. I’d be happy to provide a cup of tea and a chocolate biscuit.
• Hospitals – we need multi-disciplinary units in existing hospitals specifically for people with disability, with trained workers and specialists, and these should include crisis response teams for when things go badly wrong and endanger carers, family members and the person themselves.
• And lastly, while we’re at it, let’s give every carer a weekend away once a year with a bottle of wine and a massage thrown in!

Thanks for listening.

Oh, and the iPad was found 15 minutes after we left, picked up by Mr August and driven down to Kingston by him. They kindly gave us a $30 discount, so the parking fine only cost $10 – or $70 by the time we get the late notice.

Famous Last Words

 

Whilst scrubbing the toilet last week I had an epiphany. A question popped into my mind.

“What if I just don’t do this?”

I hate housework, there’s almost anything I’d rather be doing than cleaning. Who on earth would be harmed by my choice to simply not clean the toilet that weekend?

Then suddenly, unbidden, came this random thought.

“But what if I had a sudden accident, was taken to hospital and my mother-in-law had to come round to look after the kids? I’d be lying in intensive care worrying that the downstairs loo was dirty!”

Being an introspective person, I naturally paused, toilet brush in hand, to unpack this thought. First I searched my memory to find out whether this was actually the stupidest thought I’d ever had. The search turned up the expected result – this was definitely in the Top 3 Dumbest Thoughts of my life so far.

I mean, my mother-in-law really couldn’t care less in the circumstances. And I’d be busy fighting for my life, so probably wouldn’t have time to think it anyway. I guess I just wanted her to have a nice place to do her business, seeing as she’d taken the trouble of rushing round to mind my kids whilst I suffered a fictional calamity.

The next mental task was to admonish myself for being such a pathetic, bourgeois slave to mere housework. What kind of feminist was I to be worrying about what my mother-in-law thought of my toilet? I deserved to be taken out into the public square and beaten by Germaine Greer with a Hoover Dual Steam Plus Mop, which I secretly covet but am waiting to receive as a gift, preferably from my husband, so I can hit him with it before having a sublime appliance experience.

For yes, I am a sucker for an expensive appliance! What will you think of me? I may have read The Female Eunuch and The Women’s Room at university, but spent my adolescence in thrall to Little Women and the glories of Meg’s linen cupboard. I did think she was a bit of a ninny though, for crying over the jelly that wouldn’t set. Jo would never have cried. She’d have chucked the jelly in the bin and served tinned fruit.

But I digress. Back to the toilet.

By this stage, I’d put down the toilet brush and proceeded to other important issues. What if the last thoughts I ever had in this life were about the state of our downstairs lav?

Picture the scene: the family gathered about my deathbed, tears flowing, heads bowed, when suddenly I mumble something.

“Nurse, quick! Take out the tube, she’s trying to say something!”

“Someone…” I whisper, “someone…please…scrub…the downstairs loo…before the wake.”

It’s not really what you want to be remembered for, is it? Humphrey Bogart’s last words were so much better.

“I should never have switched from Scotch to Martinis,” he apparently said.

Another favourite of mine is Margaret Sanger, an American pioneer of birth control in the early twentieth century, whose last words were, “A party! Let’s have a party!” I’d love to have met her, she sounds like a hoot.

I suppose much depends on how long you actually have to die. If it’s in a car crash, or of a sudden heart attack, or a suicide bomber, you’d probably only have time to think “Oh shit!”

With people these days planning their own funerals, perhaps writing your own last words in advance might be a good idea. That way if you feel yourself starting to die, you can simply say, please hand me that piece of paper. No, not that one, that’s the shopping list (definitely don’t want my last words to be ‘milk, bread, coffee, dog food, domestos…’)

Assuming I don’t succumb to dementia in my old age, in which case I probably won’t care what my last words are, I guess they’ll probably be something along the lines of “Take care of your brother, make sure he has everything he needs. There’s a list of the banking details in the top drawer of my desk along with my will. Divide my jewellery up between your wives and give my steam mop to charity. Pop round and see your father at least once a week and make sure he’s taking his multi vitamins, is eating at least one meal a day and isn’t letting the dog up on the couch. I’m proud of you all and I know you will be OK. I love you.”

It’s a bit long though. If I don’t have time to get it all out, guess I’ll just say the last three words. Hopefully my family will actually be in the room at the time. Could be a bit awkward if I die just as the cleaner pops in to give the toilet the once over!

The Willy Monster

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.