Act Your Age

In another award-winning piece of parenting, I appear to have taught Happy Chin to say fuck. Or to be more accurate, fuck fuck fuck.

Well, he is nearly 26 now and really, fuck fuck fuck is a perfectly age appropriate thing to say on being rudely awakened at 6AM on a Sunday morning, having had very little sleep the night before. So yes, it slipped out and he repeated it. Except when he says it, it sounds like fut fut fut. So maybe nobody will notice. Don’t tell Gran, OK?

On our last weekend together, having finally accepted that he’d had his bottle of coke for the day and wasn’t getting any more, he went to the fridge and got himself an alternative bottle. A bottle of Pinot Grigio.

‘Bottle,’ he announced to me as he plonked down on the couch beside me and unscrewed the lid.

‘Go for it, mate,’ I said. ‘But I don’t think you’ll like it.’

In my mind I was thinking:

  • how should I feel about this, given he is an adult after all;
  • he is on medication and alcohol is not recommended for him;
  • that’s the last of the wine right there.

(Not necessarily in that order)

He didn’t drink any of the wine, he just wanted a bottle to cart about and leave, opened, in random places like the middle of the floor where any passing dog could knock it over. You can imagine how happy I was about this. I have new carpet and also it’s Saturday night and I want a glass of wine at some stage damn it!

Which is entirely age appropriate for a 54-year-old. What is probably not age appropriate is drinking a glass of wine while watching the Lion King with my 25-year-old and singing along to Hakuna Matata. Does anyone else do that on a Saturday night or have I really lost my mind?

Speaking of age appropriate things to do on a Saturday night, what would a 25 year old man be likely to be watching on a Saturday night? I know, porn! It’s time to teach him to watch porn on his iPad!

Except, let’s NOT. It’s age appropriate, I know. But it’s also fraught with Big Problems. It’s not so much that he might think porn represents how sex should be done, and that it’s OK to treat other people like that, especially women. It’s more that he has a tendency to click on links, and god knows where he’ll end up, and which of his poor carers will have to intervene. It reminds me of when I was working in a hotel and me and a female colleague found 76 pages of old lady porn on the iPad in a guest’s room after he checked out. It was so disgusting we ran downstairs to our (male) boss and made him clear the browsing history ready for the next guest. Then we washed our hands. Thoroughly.

And anyway, what sort of porn would Happy Chin like? It’s a mixed bag during private time at the moment, and I have to say that International Buses magazine is the most usual reading matter. And for those who’d like an update on the self pleasure situation, he is back to rocking on the floor, but now we have a yoga mat so no sore elbows and knees. I know it works because he recently emerged from private time in his room with a definite spring in his step, exclaiming ‘OK, alright, good, I’m OK. Good!’

So that’s worked out well.

On the whole, I think there are some things that are age appropriate that are best not taught to our young man. Binge drinking for example, and getting into cars with drunk people. I believe a person with disability has the right to be treated fairly, not to be talked down to or shouted at (he doesn’t have a hearing impairment!). To be treated with respect, basically. Just like anyone else, but of course not quite like anyone else. Vulnerable people like Happy Chin do have to be protected from what we call Poor Decisions when we, the people who care for them, know they may not be able to help themselves from making them.

But how safe should we keep our vulnerable people? At what point do we become too risk averse and take away their quality of life? Right now, Happy Chin cannot safely be transported by his carers because he escapes the car and runs on the road. This behaviour had gone away but resurfaced when he had a sudden change in his team and new carers started. He was testing limits and boundaries, made a couple of poor decisions and is now suffering for it while we scramble to get restrictive practice orders from the NDIS and behaviour management plans urgently drawn up.

Unfair on Happy Chin, who isn’t neurologically able to understand consequences? You bet it is. But we also have to keep him safe. Mr August and I try to make up for his temporary restriction of movement by taking him out on weekends, and he enjoys the outings. In an ideal world though, systems and organisations would move much faster, and the speed of getting the right support for our children shouldn’t depend on how much time and energy the parent has to hassle the NDIS.

The NDIS was passed in March 2013 (thank you Julia Gillard), so next month it will turn 8. According to verywellfamily.com, 8-year-olds can ‘understand how someone else feels in a given situation,’ be ‘capable of placing themselves in another person’s shoes’ and exhibit ‘a wide spectrum of pro-social skills including being generous, supportive and kind.’

Unfortunately, verywellfamily.com also goes on to say that 8-year-olds typically ‘adhere strictly to the rules…which can sometimes lead to conflicts.’ Hmmm, sounds like my last plan review!

The NDIS does cop a lot of flak and justly so sometimes. However, it has been hugely beneficial for our Happy Chin and many other people. Just like raising children, perhaps we should all just muddle along and do our best, hoping things won’t always be so stressful and that our child will turn out OK. That he or she (or it, in the case of the NDIS) will grow into a functioning unit capable of Good Decisions. And since the pre-frontal cortex, the area of the brain responsible for those decisions, doesn’t develop until around age 23, hoping we won’t have to wait another 15 years for a Good Decision from the NDIS!

Every Little Thing

Happy Chin taught himself to use Spotify!

He calls it ‘Popify.’ It lives on my phone and is the go-to music resource when his iPad needs charging. Connected to the rainbow Bluetooth speaker, it enables him to bounce happily around the house listening to Gomez, or Doves, Tame Impala or whatever the current fave is. Because it’s my playlist there’s no risk of Scrillex on loud repeat to drive Mum up the wall. Everyone has their Happy Chin on.

He learned to use it after I got bored putting tracks on for him. I was sitting on the couch with my evening (OK, afternoon) gin and tonic and just held my phone out. He peered at the screen, spent a couple of minutes familiarising himself with the scroll option, which is different from iTunes and different again from YouTube, before selecting the desired track himself. I was gobsmacked. It took him about 2 minutes. Hell, I took longer to learn to use Spotify! I mean Popify.

It got me reflecting on how awesome he is at using his own technology, and how comforted I would’ve been Back in the Day if I’d known how much he would be able to do when he grew up.

Ten years ago I wrote a piece for My Child magazine called Message to Self. It was about the advantages and disadvantages of knowing what lay ahead in my journey. About how I would have been comforted to know that my child was going to be amazing, but probably wouldn’t have had the courage to keep going if faced with the sheer hard work and stress involved in raising my lovely boy. Lucky we can’t see into the future, eh? As it happens, everything was going to be alright.

Shakespeare in Love has always been a favourite film of mine (I know, our Cate should have won the Oscar, not Gwyneth the purveyor of jade vaginal balls for god’s sake, but we have to let it go). The exchange where Geoffrey Rush describes the chaos of life in the Elizabethan theatre is a great metaphor for special needs parenting.

Geoffrey Rush: The natural condition is one of insurmountable obstacles on the road to imminent disaster.

Tom Wilkinson: So what do we do?

GR: Nothing. Strangely enough, it all turns out well.

TW: How?

GR: I don’t know, it’s a mystery.

It’s the not knowing that we humans struggle with, isn’t it? Will our child be OK? Will our little family ship sink with all hands, or can we ride the stormy bits out and keep everyone safe? Would we be comforted or appalled to see what is in store for us?

While there are some things I am glad I didn’t know in advance (wet sheets, aggression, property damage, intractable epilepsy), there are many things that would have really set my mind at rest. These include:

The aforementioned aptitude with technology.

The ability to sense when someone is sad, happy, angry or sick. Admittedly, we are working on the when-someone-is-sick-please-leave-them-alone thing, but we will get there.

Kisses and hugs! Happy Chin gives the sweetest kisses and the best hugs (when you can get him to stand still for long enough).

Waiting his turn. At Christmas, he can now wait for his presents, we don’t have to put a relative on tree-watch to guard the gifts.

Eating new things. He ate a salad sandwich the other day. Mr August had to go and lie down when I told him about it.

Going out in public safely. This is huge. HC used to bolt across highways and jump counters to help himself to fizzy. We stopped taking him out at all for a while. Now he listens and (mostly) follows instructions, provided we pick our outing and timing well and don’t overload him. We have our favourite spots and we’re building up our repertoire.

The happy ability to make friends. Happy Chin is great at making friends. It’s been a challenge getting carers to come onboard but once they are there, they usually form a bond and stay, often for years. We are blessed to have so many wonderful people in our lives because of Happy Chin and his sunny personality.

Helping out. He is such a willing helper with lifting heavy things, getting things down for mum from the Tall Cupboard (sucks being short!), hanging out washing, vacuuming and his favourite, using the leaf blower.

Making us laugh. There are so many ways Happy Chin makes us laugh. I just love how, when asked to shoo the dogs out, he turns to them and says ‘piss off.’ Or ‘pitt op’ as regular readers will remember (Pitt Op, April 2016).

Teaching us all about perspective, resilience and courage. He is one of the bravest people I know, he would never think to complain, I don’t think he knows how. He has drop seizures and just gets back up again. He goes to hospital to have his head stitched up after a fall and checks out the pretty nurses, he laughs while the doctor is putting the stitches in.

In short, he is amazing, or as he puts it ‘Mazing!’

Don’t know why I wasted so much energy worrying about his future. I really should have listened to Bob Marley.

Lamington Lockdown

11 Charlie

This blog is mainly about Happy Chin but technically, it’s supposed to be about parenting special needs children. I have two of these and it’s been a while since the Human Lamington made an appearance, hasn’t it? Let me redress that situation with an update.

The Lamington is now a strapping young man of 18 and in Year 12, a huge achievement given the challenges he has faced with his learning and the school environment over the years. Mr August and I are super proud he has stuck with his schooling and he’s made some friends in college, where it’s not such a big deal to be different.

Just as well, because dreadlocks were one of his isolation projects. Combined with the kilt and red Doc Marten boots he received for his birthday plus a mohawk, he is quite the sight to see around the college campus. An eyebrow piercing also materialised earlier in the year and now I’m just waiting for the tattoo phase to begin.

The recent period of social isolation and the transition to online learning wasn’t a huge deal for our Lamington, since he already spends most of his time in his room staring at his screen. It was the transition from video games to classes that proved tougher.

Attendance in online class was a hard one for me to police, as I am NOT ALLOWED into the inner sanctum, otherwise known as his room (also known as the Toxic Waste Dump and the Place Where All the Coffee Cups End Up). This left me standing outside his room at 5 minutes before class shouting ‘are you logged in yet?’ to a child who was listening to Slipknot with his headphones on.

Repeated pounding on the door would eventually yield a response, usually an annoyed, ‘Mum, I’m in class!’ I’d then retreat to the home office to do my work, and find an email from his English teacher letting me know he wasn’t logged into class that morning. Which would lead to the following rather futile exchange:

Me: You told me you were logged in!

L: I tried to log in, but there was no one there!

Me: Which class were you trying to log into!

L: I don’t know!

Me: Why didn’t you come get me!

L: I don’t know (slams door)

This exchange would be followed by my replying to his English teacher, ‘sorry Charlie wasn’t in class, I am a useless parent who cannot communicate with her son.’

Surprisingly, logging into Contemporary Music class never seemed to be a problem. He loves his music and is currently learning to scream (death metal style), which is noisy and alarming when you have no warning. I rushed to his door thinking he might be having an acute attack of gastro. The following day a handwritten notice appeared on his door stating ‘Music class – do not enter.’ Good to know. Don’t schedule any phone calls to clients at this time. And luckily I have noise cancelling headphones.

Since loitering outside his door shouting at him to make sure he clicked into Art on time was proving quite dispiriting, I was encouraged that he had a poetry assignment due. At last, something I could help with! He had to write 5 poems in various styles, and decided he would start with an ode. I grabbed my volume of Keats and began talking him through the rhyme scheme. He was actually paying attention and liked Keats’ Ode to Apollo, which he bookmarked before taking the book to his room to commence writing.

I spent the rest of the afternoon trying to work whilst hovering in the hallway with cups of tea and biscuits, delivered on the pretense of checking how the poetic inspiration was going. Finally, he announced it was done.

‘Can I read it?’ I asked.

Sure, he replied.

(He never lets me read his work, so I was trying to act real cool at this point).

The resultant poem, Ode to Death, turned out to be a stirring Viking war cry full of references to blood, battle, swords and glorious deeds, resulting in a warrior death and a swift trip to Valhalla.

It was actually really well written. Suspiciously well written.

So being all cool and nonchalant I said, ‘are you sure you haven’t knocked off the lyrics to some death metal song? This sounds like something Slayer might write.’

I know, real cool, right? Way to go mum, first thing you do is accuse him of plagiarism!

‘No mum,’ he said rolling his eyes, ‘Slayer would never write something like that.’

‘Oh. OK then. Great work son, it’s really good, I like it.’

‘Thanks Mum,’ he said, beaming.

I suggested he might try a lyrical ballad next, handed him The Rime of the Ancient Mariner and left.

Good parent, you’re a good parent, I repeated to myself. Your son has written a dark poem about death that rhymes. Excellent, now you’ve just got to get the Viking warrior to wash and eat some vegetables today.

Talking of which, did the meals thing take a few days to dawn on anyone else? Suddenly, we parents were having to provide 3 meals a day! Outrageous.

Lunch therefore became a thing. The first time I knocked on the Lamington’s door and shouted ‘lunch is ready!’ he opened up and gave me a look of utter bemusement. He probably thought, ‘she never makes me lunch on the weekend.’ Which is correct, because he doesn’t emerge until after midday, so technically breakfast is his lunch.

Being a person who likes to make extra work for herself and complain about it later, I chose to view lunch as an opportunity to work in a bit of extra fibre and nutrition to the Lamington’s largely carb and sugar based diet. Soups, stir fries and noodles were a feature, and it’s fair to say we both ate well. He even consented to join me at the lunch table! Perhaps the novelty of the situation made him forget how much he hates the sound of me chewing.

At the end of the online learning period, I am not sure how many classes he actually attended. I did my best, as no doubt all parents were doing. Those with younger children who had to be much more hands-on have my absolute respect. Having home schooled Happy Chin for years, I know how exhausting that is. Hovering in the hallway shouting through doors seems a doddle by comparison.

I think the Lamington and I were both relieved when face to face classes resumed, he donned his kilt and DMs and sauntered off to class, giving me that cute little wave through the car window that reassures me that although he’s 18, he’s still not too cool to wave goodbye to his mum. At least now I only have to hover in the doorway and shout at him once a day, and I am always guaranteed admittance when I come bearing his morning coffee!

 

No Wu for You

Liam couch 2020

It’s been nearly a year since I have posted in this blog, and how life has changed!

Mr August and I have separated after nearly 30 years together and Happy Chin and the Lamington split their time between our two houses.

As a result, I have gone from having no time at all to myself to having oodles of time and space. It has been a bizarre and sometimes difficult transition. The current coronavirus pandemic of course adds to the aloneness for all of us.

I’m accustomed to social isolation to a certain degree. We were housebound with Happy Chin a lot during his behaviourally challenging years. It was so difficult to take him out, not only because you had to endure the stares of everyone at Kmart, but also he’d break away and run across the road if you turned your back for a moment. It was always a high risk activity and we’d come home from outings physically drained and wondering if it was really worth the bother. It was safer to keep him at home, bolt all the doors, padlock the gates and get through the weekend as best we could.

But in recent years, he has grown so much and it’s been a pleasure to take him out into the community. Every weekend that passed saw us venturing further afield: ferry trips to MONA, the red decker bus, clothes shopping at H&M, Bunnings sausages, unfamiliar parks and beaches and of course the ever popular Big W (referred to by Happy Chin as ‘Wu’).

It’s painful to have to restrict his movements now, although obviously necessary for the safety of others and for him, too. With his kidneys compromised, it would be a disaster if he got coronavirus.

But it is so hard to explain to him why we can’t go to see Granny and Pop, or go to Wu. I have told him the truth – there is a pandemic on right now and we have to keep everyone safe, we don’t want Gran and Pop to get sick. That’s why we wash our hands so carefully and stay at home except for groceries and exercise. It’s not forever, just for a little while. Won’t it be lovely when we can all be together again? I bet Gran and Pop will have a big coke just waiting for you!

Happy Chin seems to accept this, and he has been excellent at washing his hands. However, two minutes later he still asks ‘Poppy?’ and keeps it up at regular intervals. Unfortunately, Gran and Pop aren’t technically minded people, so Facetime or Zoom aren’t an option. Also, Facetime is all very well, but it’s their fridge (and the coke therein) that interests Happy Chin, so virtual contact falls a bit short of expectations really.

I do feel fortunate to have had the years training from the Autism Treatment Centre (in the USA, which seems a very far away destination right now!). We were taught to live in the moment, to be glad for every interaction, to get down on the floor and play, and to be creative and fun-loving. All of this has certainly saved my bacon during social isolation. Happy Chin and I can get hours of entertainment simply looking through old photos, books and magazines. Dancing and listening to music keep us occupied and he has taken to indoor exercise in shortish spurts. Walking on the beach is something we both love and if all else fails, we plonk down and watch Shrek on repeat.

Some behaviours of concern have emerged, like pegging books across the room when frustrated. But hell, I feel like chucking things across the room, so I can hardly blame our Happy Chin! He has also had some new carers start on his team, which is always a little unsettling, although it’s wonderful to have new people come on board, especially after so many years of people being reluctant to work with him. Plus, the hen house adjacent to his unit has been a problem due to Bob the Rooster’s fondness for waking at 4AM and trumpeting the coming day loudly until 7AM. Happy Chin did not take kindly to this, the noise causing him great distress which he took out on objects, doors and walls. Fortunately, Bob has been rehomed now (no really, he has been humanely relocated, and not to a stock pot) so hopefully more regular sleep patterns will resume.

I do struggle with having so much time on my hands, though. I have gone from rushing to fit everything in, always feeling pressured and time-poor to looking out the window at the rain and thinking ‘oh good, it’s raining, there’ll be lots of weeds for me to pull.’ I’ve been rationing tasks to an hour a day so I don’t run out of things to do, and stretching things out that would normally be much quicker to accomplish.

It reminds me of the character of Dunbar in Catch-22. He was the WW2 fighter pilot who used to cultivate boredom because he reckoned it made time go slower, and the more slowly time went, the longer it would be before he got killed. And time does go slow when you’re bored, doesn’t it? Where previously I would congratulate myself on getting a job done quickly so I could move on to the next thing on my list, these days I am all like ‘great job making the lawn mowing stretch out an entire afternoon’ (no mean feat on a 600sqm block!)

You do tend to notice things more when time goes so slowly, don’t you? The other night I couldn’t sleep and got up at 3AM to sit on the couch and drink tea until the sun came up. There was a lightning storm out at sea and I watched it contentedly for ages. In my previous life I would have worried about not being asleep and missed all that beauty.

In the meantime, Happy Chin and I make the most of our weekends together. He’s such a tonic for loneliness, the way he bounces up to me and says “I’m a fish’ (I think that’s what he’s saying), and that little sideways smile he gives when I kiss his cheek. Never fails to lift my spirits.

Hopefully soon restrictions will begin to ease and I can put a timeline on things for him. I’m so looking forward to the little things we took for granted, like taking him to the pub with Tech Support, watching him dance to live music or bouncing through the aisles of ‘Wu’ with his hardhat cap on, clutching his latest headphone purchase. But most of all, I am looking forward to getting the family together so everyone can give our HC a giant hug.

Stay safe, everyone. Miss you all heaps.

 

 

 

 

The Next Person Who Asks a Question Will Be Shot

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OK, so it was cute when you were little. I understand you didn’t know much about the world back then. And I really do miss questions like ‘what do ducks look after?’ and ‘can Avis help?’

But you are practically an adult now. Why do you need my help to decide what to do with the bowl you’ve been eating cereal from on the way to college in the car? Why, upon completing a task such as mashing potatoes, do you wave the masher at me and say ‘what do I do with this?’

And why are you surprised when I respond, “I don’t know, shove it up your bum if you like!’

I’d be really interested to hear from mums out there – how many questions do you think you get asked on average every day? 30, 40, 100? And how many of those questions could the delightful questioner (who we love with all of our hearts, don’t we?) have figured out ALL BY THEMSELVES.

Now, I know I have created a rod for my own back by trying to be a patient, helpful parent who is always there for her children. Have I skewed too much towards the helpful direction and created a set of people who cannot think for themselves? Quite possibly.

There are some questions I am always happy to be asked, such as ‘would you like the Hunter Valley Chardonnay or the Yarra Valley?’ and ‘what is the airspeed velocity of an unladen swallow?’ (we love a bit of Python humour in our house). Also, ‘what chores would you like me to do?’ and ‘can I carry that shopping for you?’ Perhaps it’s the novelty factor. I don’t get asked them all that often.

I also get asked a lot of questions that Google could reasonably be expected to answer. My family have developed the idea (god knows how) that I know everything. To be fair, I may have promoted this idea by being a bit of a know-it-all. But kids, we have the Internet now! Actually, Mr August is the worst offender in the using-wife- as-search-engine department. He doesn’t see why he should bother to google when I can just tell him the answer.

Not only do I now know all the answers, I shouldn’t be expected to know and you shouldn’t be adding to my mental load by asking me all these questions! Isn’t it enough that I know all of your PIN numbers, the combination to your bike chain, the balance of your buss pass and when your next dental appointment is? I also know the whole family’s birthdays, the amount left over in your bank account after all the bills have been paid that you can go out and have fun with, and what the meals for the next 7 days will be.

But there is a limit to how much available space there is in my brain. Please don’t use up my available data with stupid questions like ‘what do you want done with this spatula?’ Or you may get a response you don’t like!

I need quite a bit of bandwidth to accomplish the things I need to do every day. Working full time, managing the finances, the social activities and the care of a child with complex medical challenges takes up plenty of room in my head. I also like to take care of my mental health with exercise, meditation, reading and friends. Then there’s things like writing, further education and voluntary community activities.

I will always have time for you when you really need me, sweet children of mine (I will be especially happy to allocate time to Guns N Roses karaoke). Your problems are my problems. I am simply asking that, before you ask me another question, ask yourself a few questions instead. Is this question important? Do I need the answer right now? Do I need to ask Mum or can I figure it out for myself? Has Mum just got home from work and her arms are full of groceries? And the most important one, will Mum tell me to shove it up my bum if I ask this question?

In short, when asking questions, please don’t hesitate to hesitate.

 

 

 

Smile For the Camera

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I have a major policy announcement to make. If elected I will make sure all hospitals have sensory rooms.

We’ve just been in Melbourne with Happy Chin for a week of video EEG monitoring and I’ve seen some things, man. And some stuff too.

In the usual manner of a visit to hospital with a special needs child, it was assumed Happy Chin would fit into the hospital’s routines. That is, he’d:

  • Cooperate fully with all procedures
  • Stay on the bed where the camera could record him
  • Put up with the lights on 24/7 and no sheets or blankets allowed on his bed
  • Not pull the EEG wires off his head
  • Not pull the cannula out of his hand
  • Lie down in an MRI machine and stay completely still for 25 minutes

Parenting HC has been a rollercoaster ride of soaring highs and crushing lows, and this hospital stay was no exception. On the whole our young man put in a valiant effort in a hostile environment. Don’t get me wrong, the staff were lovely, but hospitals are noisy, unfamiliar and frightening.

We did our best with music, games, magazines, massage, everything we could think of to keep him occupied so he wouldn’t pull off the wires. I think Day 3 was my lowest point, when we’d struggled to keep his hands down but ended up having to watch as he gave himself another neural Brazilian. We then spent 12 hours (in shifts) on prison guard duty, backs to the door to stop him running off the ward.

But the highs were pretty outstanding. Watching him clamber off a hospital trolley and onto the MRI bed, then put his head in the headrest was something I never thought I’d see in my entire life. Unfortunately, we didn’t get the scan. Even with sedation he just can’t stay still that long. I advised the doctors that a general anaesthetic was the only way they’d get a scan but that was not possible. He’d just eaten a quarter pounder meal (thank you Uber Eats!).

He also charmed the nursing staff, as is his wont. We’ve been telling him how amazing he is since he had his first awake EEG earlier in the year and every time a nurse was able to successfully flush his cannula, or take his temperature, he’d shout ‘Mazing!’ at the top of his lungs. Then there’d be a high five or a fist pump, and he’d be given a sticker on his hand dressing. By Day 3 his entire hand was covered.

As always, hospital was a big reality check with many opportunities to be grateful about our own personal situation. The lady in the room next door had either dementia or mental illness of some kind. She was convinced the bastards were coming to get her and would cry and scream until the nurse came. She also had pneumonia and a cough that sounded like Gollum coughing up a hairball. Turns out she had a collapsed lung, poor thing.

Then there was Mohamed down the hall who caused a huge commotion by attempting to run off the ward. I’m not sure what happened next, but a Code Black was called and he wound up with 3 security guards assigned to sit outside his room and all of the furniture removed except the bed. When I walked past that evening he was rocking and moaning on the bed, and he smelled as though he hadn’t been washed in a week. He probably hadn’t. He was a large young man, in his twenties I’d estimate, and even as heavily sedated as he obviously was, in deep distress. I’m a veteran of administering personal care to a young man under combat conditions, but this was a whole other level. My heart bled for poor Mohamed, there was no family around him or visitors. I wonder what his story was and what will become of him.

As for Happy Chin, by Day 3 he’d had enough. The neurology team acknowledged there was really no point attempting to put the wires back on and anyway, they’d gotten 2 days of data and one seizure recorded, so they discharged us and we flew home that night.

But back to my campaign promise, how different might things have been if there was a sensory room available on the ward? The neurologists were graceful enough to admit that they’d tried to push a square HC-shaped peg into their round hole and that a more ‘tailored’ approach would have been better for him, what would this approach look like and could it benefit other people? Here are my ideas:

  • Install 360 degree cameras so the patient doesn’t have to stay in one spot.
  • Get rid of the fluorescent lights and install softer lighting that still enables the patient to be seen on camera.
  • Music should be the patient’s choice as far as possible (the hospital could have a music library) and a playlist created before they arrive.
  • Sensory room equipment such as vibrating floor cushions and handheld light toys would be soothing without blocking the view of the patient. Clear fibre optic curtains could be one option. Robotic toys such as Leka would be ideal (I understand the Leka is still in development). Wall mounted aroma panels or aroma dough are also great ideas.
  • Lastly, the people. The wonderful, caring professionals who work in hospitals probably have enough on their plate without me insisting on further training for them. In no way do I wish to criticise, but if I could give a few tips for helping to create a stable, calm environment they would be – speak in low and soothing tones, give choice wherever possible (simple, clear choices) and please avoid sudden movements if you can.

This room could be used in many scenarios. Obviously, I’ve mainly thought about Autism Spectrum Disorder, but people with dementia or mental illnesses might also benefit.

Reflecting on our visit, I was surprised with how compliant Happy Chin was. 2.5 days was 1.5 more days than I thought we’d get! I sincerely hope we don’t have to go back for more monitoring anytime soon, but if we need to, we will. Thank you to all of the Melbourne friends who offered to visit, sorry we didn’t get the chance to catch up, HC would’ve loved to see you. And also to everyone who sent their love via text or Facebook, and to our wonderful family who bought gifts to cheer our boy up. To those of you who offered to bake gin and tonic slice, hold that thought! We may well need to call on you in the near future.

 

 

 

 

 

 

Role Play

 

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I’ve wanted to be an actor ever since I was a small child. I lived inside a world of words, with characters and dialogue swirling around in my head, my mind constantly off in a story somewhere, paying insufficient attention to what my mother or teacher were saying. Invariably I’d cast myself as the female lead in these stories. At school, I wasn’t pretty enough to be the female lead in the school play, or tall enough to be the male lead (it was an all-girls school), so I usually ended up as comic relief. At last, in my final year, I was cast as the female lead, and the highlight of my brief acting career was a glowing review in the North Shore Times. Heady stuff for an 18 year old.

But my parents talked me out of a career in acting, and I ended up in hospitality, which is similar in many ways. An a la carte restaurant is like a theatre. Preparations before the show are intense, the mise en place must be perfect in every detail, there’s that nervous wait before the curtain goes up, the sick, top-of-the-roller-coaster feeling just before service, when you know the owner has overbooked the restaurant (again). We’d say a brief prayer to St Manuel, patron saint of Harassed Waiters. Would tonight be the night everything would fall apart? Would our little team of chefs, waiters, kitchen hands and bar tenders get through this night of turning over 150 covers in an 80 seat restaurant? Who would be in the shit, kitchen or floor?

Then the curtain would go up, and we’d lose ourselves in the drama of the evening’s service, finally being spat out at the other end, damp and exhilarated. The beers that’d been in the ice machine since 10PM would disappear down a dozen thirsty gullets at speed. We’d trade war stories with good humour, relieved it was over for another night. On Saturday night we’d pile into cabs and head for the Cross to hit the bars, the weeks’ pay disappearing in one night. Sunday morning we’d wake with sore heads and fish around in last night’s jeans for a stray tenner to take up the pub, then get up Monday morning and do it all again.

Not unlike an actor’s life I reckon!

In reality, the acting skills (such as they are) that I picked up in high school plays and amateur theatre companies have come in very handy in my career as a mother of children with special needs. All parents play roles. You discover very early on that you have absolutely no clue what to do in many situations, so you just have to pretend. This works a treat early on, but tends to become slightly unravelled once your kids are old enough to say, “But Dad, why do I have to go to bed? Caleb’s Mum and Dad let him stay up til 10 o’clock!”

With Happy Chin, we had to make up pretty much h everything as we went along.

The first role I learned to play as his mother was Pollyanna, because I believed for at least the first 5 years that everything would turn out for the best, all by itself and with no help from me. This foolish optimism probably got me through the early years actually.

Gradually I learned to be the Canny Player of the System. To the new respite service provider I said, ‘His gross motor and receptive language skills are excellent.’ To the funding provider it was, ‘He really struggles with verbal communication and needs lots of support to participate in activities.’

As special needs mum I was also expected to be Omniscient Woman. Some of the things I have been asked and expected to know include: what do you do when he bites/pulls hair/refuses to get into the pool/refuses to get out of the pool/throws his lunch across the room/persistently wets himself and laughs about it? As I have 2 other children, I was also expected to know where everyone’s bus pass was, what days the canteen was open and what their brother had done with their blue beanie (usually he’d taken it to bed with him and wee’d on it).

I’m pretty used to playing The Referee (see The Hat Police, May 2018), fielding complaints such as ‘he took the books out of my room and threw them on the roof, those are my underpants, he ate ALL of the biscuits, why do you treat him differently to me, he gets away with everything!’

Sometimes we have to be champions for our special needs children. One of my oldest friends has 3 children with Fragile X syndrome. She was telling me a story about the time she went in to bat for her son after they received blatantly unfair treatment from one of the children’s hospitals due to a ludicrous government policy.

‘Anyway,’ she said, ‘I was standing in the Prime Minister’s office and I told him…’

‘Wait, you were in the Prime Minister’s office?’

‘Yes, of course,’ she said. “I know how to work my contacts.’

I won’t name her for privacy reasons, we’ll just call her Xena Warrior Princess.

(She got the unfair hospital policy overturned by the way).

My friend Xena is a personal hero of mine. Warrior Princess isn’t a role I am comfortable with. But sometimes you just have to woman up. Like the time Happy Chin was 3 and in hospital with mastoiditis (a really nasty ear infection that extends into the skull). He’d been admitted with a high fever and spent 3 days screaming in pain, only stopping when he fell asleep, too exhausted to cry any more. The antibiotics weren’t working and it was impossible to get a cannula into his feverish sunken veins. After 4 attempts by doctors I was ready to stick a needle into them a see how they liked it. They left the room saying they’d be back in 10 minutes to have another go.

I promptly burst into tears.

I know, I know! Michelle Obama would never have burst into tears.

The nurse took the opportunity in the doctors’ absence to advise me in no uncertain terms to pull myself together and stand up for my child, and she told me how to go about it (I wish I could remember her name, she was awesome).

So with hands shaking, I summoned my inner Ellen Ripley and when the doctors returned said, ‘there is no way you are going near my child again with that needle. You need to get him to theatre, put him under and put a long line in his neck.’

The nurse stood behind the doctors and pumped the air with her fist. Fair to say it was a shared victory, because they took him to theatre and intubated him, got the antibiotics into the line and we were out 4 days later.

Standing up to the medical profession is hard sometimes, but for me the hardest role to play is the Person Who is Coping Splendidly. This is the face we put on for the wider world every day when we go out to work, where we don’t want to horrify our co-workers with tales from the frontline. Sometimes we put it on for our friends and family because we don’t want them to worry. We tell our other children, ‘Mummy’s alright, just a bit tired.’ We tell them everything is going to be alright, but it isn’t always going to be that way. In fact, everything is going to be really crappy sometimes.

I cope with this by compartmentalising my life. It’s not possible to be Organised Woman who has it together 24/7, so I save this one for professional situations, and I have a trusted group of co-workers I can vent to when it all gets a bit much. Organised Woman also attends NDIS planning meetings and most medical appointments (except our lovely GP of many years, with whom I can revert to Woman on the Verge of a Nervous Breakdown).

Of course, it’s important to schedule in regular time just to be Yourself. Otherwise you might forget who you are, what with all of those hats you have to wear. I do this at 5.30 in the morning before everyone gets up. No hat is required, just a pot of tea and a good book. On the whole I think I like this role the best. There’s no time spent in hair and make up for one thing. I’ll probably never win an Academy Award for it, but maybe I’ll get a review in this year’s Mother’s Day card.

Happy Chin New Year

Liam Xmas 2018

Happy Chin New Year everybody! Hope you survived Christmas? Well, obviously you did, or you wouldn’t be reading this, would you?

I have made two New Year’s resolutions:

  1. To practice gratitude more often
  2. To learn meditation

I’ve already made a start on number 1, I’m grateful I got through the holidays.

This time of year, so relaxing for many, is a time of high stress for us. We have our Happy Chin home with the family, which is lovely for him and us. It’s also fraught, tense, relentless, chaotic, funny and exhausting. Pretty much like Christmas with children usually is. Only now they’ve grown up and can’t be put to bed at 7.30.

Having him with us for extended periods of time does make me wonder how I managed all those years when he was living with us full time. You need all your energy and wits every moment of every day. He does not accept that you are tired, have a headache or just want to be left alone for two seconds. You need to be fully there for him, mentally tough and resilient at a time of year when I am usually running on empty after a busy year

On the whole, we had a good time. We planned lots of outdoor activities and the weather was beautiful.

Happy Chin discovered the John Butler Trio and we were relieved the musical choice for the week was one we could live with. His favourite song is ‘Zebra,’ which he found on my Spotify feed. He liked to jump on his mini tramp with the blue tooth speaker glued to his ear shouting ‘bum!’ at regular intervals.

Mr August figured out this was because the song goes ‘da da da da da dum, da da da dum” and HC heard ‘bum.’  Have a listen, it’s on YouTube.

After the song finished, HC would come bouncing into the kitchen, find my phone and point at the screen saying ‘Spotify.’

In an effort to increase his vocabulary, and to ensure that carers would know what the hell song he actually wanted, I decided to teach him to say Zebra.

I did get him to say Zebra once or twice, then he’d bound off, listen to the song and come right back and say ‘Spotify.’

‘Yes,’ I’d say, ‘which song do you want on Spotify?’

“Dat one,’ he would reply.

‘You need to say the name. Here’s a hint – it has black and white stripes.’

Blank look.

So I grabbed the power bill and drew a zebra (poorly) on the back.

‘Look!’ I shouted ‘What’s this?’

Blank look.

In desperation I opened up the laptop and googled zebra images.

‘Look,’ I pleaded, ‘what’s this?’

‘Horse,’ replied Happy Chin.

‘Zebra’ by the John Butler Trio is now known as ‘Horse’ in our house. I anticipate phone calls from carers in the coming weeks asking me what to do when HC asks for a horse.

He’s also really enjoying clothes shopping and is a highly motivated and decisive consumer. He definitely knows what he doesn’t want, at any rate. We visited H&M to exchange a pair of shorts he’d received for Christmas that were too big. The minute we got off the escalator he shouted ‘T shirts!’ with great delight (HC loves T shirts and has at least 30 of them) which put paid to any ideas I had about getting shorts (which he has about 5 of).

I think I showed him every single pair of shorts in the store, and to each one he yelled ‘No!’ So I gave up and we bought him two T shirts, although I did manage to get some shorts into the mix by pretending they were for the Lamington.

Of course, it isn’t Christmas until somebody cracks, as the saying goes. And that person was of course me. Mr August had to work between Christmas and New Year’s and although difficult behaviour (also known as ‘poor decisions’ in our household) had been at a minimum thanks to parental vigilance, distraction techniques and bribery, one day I was too exhausted to keep it up. Mayhem ensued, crockery was smashed, doors were slammed and my response was simply to go out to the back deck and burst into tears.

I sat there sobbing and indulging in some why-me-ness for about 20 minutes, during which time the Lamington gave me a cuddle and offered me a cup of tea, and Happy Chin cleaned up all the broken crockery and the bucket of fresh apricots he’d tipped all over the floor. Miraculous!

Then I made my next mistake – thinking I was strong enough after all that emotional upheaval to jump straight in the car and take two dogs and HC to the beach for some exercise. On arriving at the beach, HC refused to get out of the car. I waited for 15 minutes by the car before giving up, putting both (disappointed) dogs back in the car and gunning it for home. Quickly figuring out that we were not returning home via the shop for a treat because he’d not done the right thing and exercised his pets, HC amused himself by taking his seatbelt off and trying to get out of the car. I pulled over, switched off the engine and told him we weren’t going anywhere until he behaved safely. This didn’t go over well and he started punching me.

Strangely enough, I wasn’t afraid like I had been in the bad old days. Just desperately tired and really pissed off that we were back in this place after all these years.

Long story short, I phoned Mr August, told him to come home from work, got in my car and drove. I didn’t know where I was going, I just knew I had to get away. It had been a long time since I had felt so lost, I thought those days were over. For want of anything better to do, I pulled over at the Botanical Gardens and took myself off to the Japanese Garden, where I found a quiet spot, sat down and proceeded to have a quiet cry.

The strangest feeling of disconnection came over me that afternoon. I really can’t explain how odd it is to feel yourself entirely separate from the rest of humanity. I wandered through the gardens like a ghost, watching all of the normal people enjoying the beautiful sunny day and each other’s company and I felt completely outside of human experience. I felt as though no-one could see me, no-one knew who I was or where I was, no-one could understand me and that I was unfit for human company in any case. I felt like a wraith. It was a very peculiar, lonely and isolating feeling and one I have had many times before. It stayed with me for days.

I like the company of others, I’m an extrovert, but I wonder how many other parents out there have felt sometimes that it’s just too hard to be among people, even close friends that you love, simply because their lives are so different from yours? Sometimes I have turned down invitations just because I know that I will sabotage the evening, I won’t be able to stop from complaining about the latest behaviour or seizure or sleepless night, even though I know my lovely friends would understand.

There is a real loneliness to special needs parenting, and am very grateful to have a community of friends who are doing the same job as me. It’s just that at Christmas time, they tend to be busy with their own special needs kids and probably feeling as tired and overwhelmed as I am.

Christmas is a very lonely time for many people, I just never thought I’d be lonely when I was technically not alone. For most of the day during the holidays, HC is never more than one room away from me, I can always hear him, and there is rarely more than a 20 minute break between one request and another. He stands in front of the shower while I bathe and outside the toilet door while I, well you know…

We got through, as we always do. This wasn’t even our worst Christmas. Most of the Christmas presents survived, for a start. I only had one major meltdown. Most importantly, the gin stocks held their ground, although we did run out of lemons at one point.

Luckily being a special needs parent teaches you not to sweat that kind of small stuff. Besides, I don’t mind a dash of perspective with my gin and tonic.

The Doctor Will See You Now

Skeleton

Is there a doctor in the house?

Well, it would be bloody handy if there was! Even a doctor who just stopped by for a drink one weekend and conveniently left their prescription pad behind.

The amount of time we’ve spent at medical appointments over the past 23 years, it would have been quicker for one of us just to have gone to medical school. Why on earth didn’t I elect to study medicine instead of arts at university? Oh yes, that’s right, grades.

I could have married a doctor, I suppose. If one had ever asked. I never really met one I fancied apart from the doctor who delivered Happy Chin and it’s fair to say my chances of netting him were pretty slim. I was not really at my best that day, what with the epidural and 24 hours of prolonged labour and all. I may have been able to land the red nosed obstetrics registrar who wandered in off the golf course midway through to boozily enquire whether it was alright to give me an internal, but Mr August glared at him so hard it was probably unlikely.

Anyway, a doctor spouse is all very well in theory but has its disadvantages. It’s much easier to call your husband in tears and demand he come home right away because your child has just put his fist through yet another window when your husband is not a person who may be in the middle of resuscitating someone.

I mean, Shirley’s lawn will still be there to mow tomorrow, right?

Hang on, I hear you cry, you were the one that wanted kids! Endless medical appointments are part of the shit you sign up for when you become a parent, didn’t anyone tell you this?

I can’t remember, but I was 26 and probably wouldn’t have listened.

So in the spirit helpfulness, I am writing this piece. Young People, heed my words! This is your future if you elect to have children! You too will lose valuable hours of your life sitting in waiting rooms trying to stop your kids commenting loudly on the other patients’ personal attributes while destroying the selection of 70s era Little Golden Books! It’s not too late to go and study medicine!

All parents spend a lot of their time ferrying their children around to all sorts of appointments and we do it because we want our kids to be healthy, able to achieve their full potential and have a good life in general.

As a parent of a child with a complex disorder, I spend so much time in waiting rooms that you’d think I’d be a Jedi Master at it by now.

On the contrary. At our second to last visit, after waiting 25 minutes to be seen, Happy Chin simply walked out the front door, ran straight across the road into the bakery with me in hot pursuit and helped himself to a fizzy drink. Dropping a fiver on the counter, I managed to get him safely back across the road and into the waiting room where moments later the shop assistant from the bakery appeared.

‘Is this your change?’ she asked, handing me 80 cents.

‘Keep it,’ I said, ‘he’s stolen one of your magazines.’

Happy Chin is as good at waiting as you can expect a young man with poor impulse control and low frustration tolerance to be. He really does do very well considering the amount of medical scrutiny he is subjected to.

We currently have 8 specialists on our team taking care of his medical, psychological and therapy needs. Then there’s the hospitals he visits regularly, and the professionals we see there. In any given year he’s poked, prodded, asked to say ‘ah’ or simply just talked about while he has to sit patiently, by at least 50 or 60 people.

We are pretty good at navigating the system, have the whole general anaesthetic thing down pat and know a few tricks here and there. For example, I always go to specialists clinics in business attire, full make up, hair done and with my laptop bag over my shoulder (I’ve learned not to wear heels in case I have to chase HC down the hospital corridor). I am sorry to say this inevitably gets us seen quicker. On the last occasion, the specialist actually apologised for having taken up so much of my time!

I have noticed those in the medical profession treat me remarkably differently when I am in my Serious Professional Woman outfit compared to my Tired Mother in Trackpants get up. They don’t talk to me like I am in Grade 5, they even sometimes listen to me!

But as Tired Mother I am often treated with condescension. This is partly because I have resting Dumb Face. I get so bored with having basic concepts explained to me in the kind of sing-song voice generally reserved for talking to toddlers that I drift off and start thinking about what to have for dinner or whether I have booked the car in for service. My face meanwhile takes on an expression indicative of an IQ lower than your average potted plant.

The doctor, NDIS planner or hospital receptionist then leans forward, looks at me pityingly and asks in a very slow voice, ‘do you understand?’

I actually understood in the first 5 seconds, I was just employing my time for the remaining 7.5 minutes you were speaking to think of more important things, like the Lamington’s ingrown toenail.

When you spend your whole life chronically short of time, it is incredibly annoying to have your time wasted. Coordinating a visit to the GP simply to fill out forms, which you also have to coordinate with your son’s carers so they can drive him 40 minutes from home to the surgery, in order to sit in the waiting room for 45 minutes just so that the doctor can sight HC in order to get paid by Medicare is the most ludicrous thing I can think of. I will be the happiest person in Tasmania when we finally get access to Telehealth.

I’m not blaming medical staff, and I do understand there have to be rules. And the staff are probably just as frustrated as I am. They are also under resourced and overworked.

Especially in hospitals, where there are similarly baffling rules. Being asked to arrive at hospital at 7.30AM for a day procedure when your child ends up waiting until 3PM to go to surgery (hungry, thirsty and bored) is, quite frankly, cruel.

I have been known to just let Happy Chin wreck the waiting room just to get him bumped up the theatre list. Sure, he may be older than the other kids, but he is frightened and unable to understand what is happening. He is also likely to escalate, lash out and scare the other children. So just get us done and we’ll be in recovery before you know it, then on our way and out of your hair (just as soon as we’ve gone through a box of icy poles and all of the vegemite sandwiches).

It’s when I read statistics about poor health among carers that I really have to reach for the gin bottle and the cheese twisties. A 2008 study of 5,000 carers found that around twice as many carers were in poor health than people in the general population.

Well of course our health outcomes are poor! When do we have time to go to the doctor/dentist/skin cancer clinic/toilet?

The last time I went to the dentist was in 1995. I remember because they offered me a root canal at $600 or a tooth extraction at $60. Can you guess which one I chose?

It’s not good for carers to neglect their health. We are needed. If we fall then it all comes crashing down with us. And I do try, I really do. I don’t want my sons to lose their mother any earlier than they have to, especially not from something preventable.

But I have to bank my sick leave for HC’s neurosurgery next year, I average two appointments a week with HC and the Lamington and then there’s those annoying things like working, shopping and cooking. Oh, and sleeping.

If only I had time to go and see my local member about this! Does anyone out there know the Health Minister? If so, please invite him round for a drink. Ask him to bring his prescription pad!

Thanks in advance,

Tired Mother in Trackpants

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

Rocket

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!