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.

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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!

TSC Heroes

TAND conference Sydney

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

Sheets

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

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?