Sunday, October 31, 2010

The other day I met a man in the park…

And I promise this is not some dodgy George Michael style story. I am not in jail, haven't crashed the Subaru into a camera shop, promise.

I was doing the evening ritual with Billy and Scruffy (dog park, scooter, playground...) and when we got to the playground part of the adventure, there was a man and his two little boys on the equipment. I (very briefly) thought, 'Odd to see a man by himself with his kids. Good on him.' And went about the exciting process of trying to convince the dog that 10 metres away from the playground wasn't actually that far away.

Billy and the two boys started playing an autistic version of chase (they try and engage him, and he 'pretends' to run away), and the man and I got chatting.

He was a pilot. He flew in the Australian Air Force in the first Gulf War, and then became a commercial pilot. He's flown for all of his adult life. When he talked about flying, his eyes brightened and he got a bit taller. He clearly loved to fly. He shared a lot of flying stories, making me feel much more comfortable about long haul flights in the process. I heard about the training they do, the ease of navigation, the way they prepare for potential issues, the intense risk management... all good. 

Until he mentioned the fact that, not too long ago, in a routine check up, they found he has a heart condition. And that means he's grounded.  He can't fly, until the heart condition is resolved. His wings were taken away. And when they were, his heart was broken.

I should mention here, that I have one of 'those faces'. People talk to me. It may be because I talk to them, but seriously, I am constantly amazed at the stuff perfect strangers disclose to me. I have no idea why, but I take it as a compliment. The Silent Partner takes it as a curse. He hates it when I get chatting to strangers. He's not a stranger chatter. Unless he's drunk, then he's everyone's friend. But that's a whole other story.

Back to the playground. I'm listening to this man's story. And more than that, I'm seeing the effect of his story on his being. He's getting shorter by the second. He's slumping into himself. He can barely make eye contact (no, Valerie, not everyone with eye contact issues is an Aspie, OK??). 

His reaction got me thinking. 

The pilot without his wings, is similar to the way I was when we first heard the 'a' word. I felt like my life force had been sucked out. Autism sucked it out. The light of my life... this gorgeous, clever little boy was busted. I wasn't going to get to be the parent of the captain of the block building team. My kid wasn't going to be the dux of the school. No more 'mother of the prime minister' fantasies.  

For the first few doctor appointments (or 'the parade of paediatricians' as I like to call it) I refused to accept anything they were saying. They were all idiots, and no way were they going to take away any of the brilliance and excellentness of my little man. I regret that stance a bit because some of them were talking about kind of useful stuff like GF/CF and b12 shots, and it took me like four years to come back to it. 

But hey... I was devastated. I plead temporary insanity. I was getting shorter and losing the light behind my eyes. I didn't know what was going to happen in the future. I felt rudderless, having potentially lost the one thing I knew I was born to do.

Like park man. Mr 'Point-it-to-London-and-decide-what's-for-dinner' doesn't have a clue what comes next. He's lost, because the thing that makes his heart sing is potentially lost.

And so, a couple of days ago, as the afternoon turned into mosquito hour, I found myself reassuring the pilot that everything would be OK. How did I know that? I knew it because we thought our lives were over too. We thought this disorder was going to steal away our little boy, and our dreams of the future with him. We thought we were no good. That we had failed. That the destiny we had dreamed of was a mirage.

And we were wrong. 

We still have him, and he's awesome. He's living every moment like every other kid.  He's laughing and crying and trying his hardest. He's winning, all the time. He might not play rugby for Australia, but he'll find his place. It will be something he loves and is good at, because it is not in the nature of the beast for him to flog a dead horse just for the sake of it. 

I told Mr QANTAS that we, in the process of having our hearts ripped open, have become a slightly improved, definitely more honest (and more intense) version of who we thought we were. We have accepted the road less travelled, and we are really, truly, enjoying the journey.

I'm confident that my airbus flying friend can do the same.

And if I ever make enough cash to get myself on one of his flights, I hope he actually chooses the road more travelled (or the flight path more travelled), because I'm not really a very confident flyer.

Friday, October 29, 2010

Anyone else deal with this...

Billy's not well. He has a fever and a sore throat. His energy is low,  he's teary. It's day one of symptomatic something.

I'm thinking most people with kids deal with this bit. Unless you are super lucky and if you are... I'm sorry, but I hate you just a little bit.

The thing that I wonder about is the way autism (or is it the SPD, or both) makes illness present. Honestly, looking at him today, without even beginning to take Billy's emotional life into consideration, you would think he was seriously ill. And he may well be, which I'll get to in a second (catastrophiser that I am).

I've alluded to this before. Billy is deeply effected and affected by life. Light, sound, smell, movement and illness knock him around in bizarre ways. He is depleted by intense sun light. He is repulsed by everyday smells. He is assaulted by sudden sound. He is exhausted by atmospheric sound. He is grounded by simple illness. Poor little fella... if it's not hard enough to decode people's language and read their damn faces, he also has to get beaten about by their orientation to the sun. It just doesn't seem fair.

Today, without ibuprofen, he whimpered and shivered and rolled his eyes back. And I get that many people out there would be thinking, 'Holy crap... that kid is really sick.' And I do get very frightened that he is, really sick sometimes. And many, many times we have gone to the ER. Worse, we've gone to our local doctor and the doctor has looked at Billy and ordered an ambulance. And... at the ER, they say... 'Hmm... (very loudly)... we'll put a drip in and see how he goes.' We stay a night, and then we go home.

Except for the two times they sent us home, and then we were back the next morning, worse than ever. One of those ended in Mycoplasma (nasty scary rash, hateful antibiotics). The other in Transverse Myelitis and more seriousness than I EVER want to deal with again.

And (surprise, surprise) those events scared the hell out of us. Which makes the 'is it a cold, or is it some freaky Australian mutation of West Nile Fever' even more of a challenge. For me at least. Did I mention the catastrophising thing?

Tonight I'm taking solace in the magical ibuprofen transformation. As long as it's making his perk up (as opposed to puke up) I will keep my desire to convince an off duty ER doctor to crash on my couch at bay.

And remember that as much as my heart is ripped out for Billy, I know so many other autistic kids whose ability to weather life's intensities is compromised in much more profound ways. I'm not one of those people who wants to 'cure' my kid (not that there's anything wrong with that) but, on days like today, autism's more charming qualities evade me, and I want it to go away for a while.

Saturday, October 23, 2010

Sometimes I wonder...

I wonder about myself a a parent, as though 'parent' is some kind of independently moderated constant concept.

I wonder if I would have been a different parent, if autism hadn't been thrown into the mix. I wonder if autism makes me a different parent (not better or worse, but different). And I wonder if the way I started parenting, before I knew much about autism, was the way I would have gone on...

Tomorrow, we're off to a birthday party. Our lovely, compassionate, welcoming school community have included Billy in a classmate's celebration. I feel very lucky to have found this village, and know that they are playing a huge role in Billy's development (in the unmeasurable human ways).

But I've already hit the red wine bottle trying to calm the old nerves in preparation for the event.

Will he cope? Will he understand? Will the subtleties of the house party experience evade him altogether?

While I've been thinking, it's sent me back to my own childhood. I've been struggling to remember kids parties in my own life. Perhaps I was one of those kids no-one wanted at a party.

There's no doubt I was not the rudder by which my peers navigated their way through social waters. I dreaded parties, never sure when to eat, what to do and where the toilet was (let's not even start with the issues around using toilets in places that were not my home...)

I know, as a child,  I sought the company of adults, and impressed them with my knowledge of obscure non-child-like subjects (are you sensing a pattern here...?) Perhaps my memory of kids parties is actually my memory of the space away from the children, who always seemed to be engaged in deeply pointless and unfathomably random activities.

Oh God, my kid didn't have a chance, did he?

So, here's my question. And it's not that much different to the ones I was asking in my head when I was a child.

Is everyone else worried about the things that I am worried about?

Do the parents of the perfectly NT kiddies sit at home, knocking back the red wine, (avoiding the work they should be doing... that's a whole new conversation), and thinking 'how are we going to make it through that birthday party?'

Do they wonder if their child will break something without ever knowing it shouldn't even have been touched? Do they fear their child might choose to take a leak in the potted palm? Do they dread that their child will stick out when it doesn't occur to them to greet anyone, or leave the birthday presents for the birthday boy to open?

I think I was lucky (or not) to have been gifted with a temperament that said, 'Just don't do anything spontaneous, in case it's wrong.' This meant my childhood was spent in detective like observation of everyone and everything. When I wasn't discussing foreign languages with the parents of my friends, of course.

Billy has a stunning temperament of his own. Sweet, calm, connected to his experience.  He is like a barge anchored on a choppy bay - unassailably himself, regardless of what life throws at him. He has a rawness about him that makes his days rich and deep, even in their mundanity. Even as a baby, I would swing from thinking he was sick, to knowing he was thriving, just by observing his reaction to the minutiae of his day.

And that is why I may need a little more alcohol before we go to this birthday party.

I hope the other parents have a parallel experience to this. It's tempting to think they're just thinking, 'Oh sweet, two hours off, what will I do?' But, I hope I'm not completely right... not because of their decisions, but because of mine.

Because (and here's the tail of the circle finally coming to grab onto the head), I suspect I would still be the mother who wanted to be at the party with my son, even if he wasn't on the spectrum. I think I may have always been the mother who wanted to walk alongside my kid as he broke out into his own world.

And I guess I've got autism to thank for making that kind of hovering, codependence possible.

Now, if only I could use autism to justify the red wine, the overwhelming desire to eat potato chips 24/7, the ever-present thought that if only cigarettes didn't kill you, I could smoke again...

Tuesday, October 19, 2010

If you have a spare moment...

Or thirty.

Download this podcast and listen to an extraordinary take on parenting a child with a disability.

His name is Ian Brown, and his son is called Walker.

I may be especially fragile right now, but I cried and laughed and was, as my friend Jane once said, pulled up in my socks.


Thursday, October 14, 2010

It's all a little crazy...

Life has forced autism into the background, as both work and family conspire to eat up our very short days.

And interestingly, Billy has risen to the occasion in a very interesting way.

We are out of town. We are at the beach. We have limited internet access.

Billy loves the variety of locations, n a very un-autistic way. He does rue leaving a place...'I wish we were back at Nanna's house...', 'I wish we were at the lighthouse again...'. But beyond that, he's eating up the new experiences.

We struggle with family members who don't see him very often saying helpful things like, 'Of course a little boy should have some ice cream' (because we are evil nasty parents who have concocted the mega colon that has sent him to hospital in the past... who needs to learn about stuff and make change... give the kid some ice cream for crying out loud). They also like to offer constructive advice like 'If he doesn't like coughing he'd just better get used to it quick smart. People have to cough.' (Of course, an adult's need to cough is more important. Why expect the disabled kiddy to have an opinion?)

But, you know... all in all... he's doing OK. I have learned to resist the urge to punch people (they are advancing in age, it's hardly a fair fight) and they have learned to ignore my pinched mouth.

The beach is a whole other issue. Twelve months ago, we couldn't pay Billy to hit the beach before sunset. Even then, he took some convincing. Now his first words are, 'Can I go boogie boarding now?' Often, it's in the murky light of pre-dawn, and in those instances, I am indeed a nasty parent who refuses his requests. And it's hard because he's often wearing his board shorts endearingly backwards (having dressed himself) and has had a stab at applying sunscreen as well.

He runs, he dances, he body surfs (in a manner of speaking). He climbs rocks, and sails around on his boogie board/skim board/beach limo hauled by an ever more buff Silent Partner (have you ever tried to pull one of those things along the sand? It's not easy).

Something wonderfully light and relaxed has taken Billy over. And whatever it is, I hope it doesn't disappear any time soon. I may have to gaffer tape him all over to seal in the beach bum after we get back to the 'big smoke'.

And finally, the internet access. Interesting... Billy loves YouTube. Almost as much as he loves feet. Once, those two worlds collided (have I mentioned this before...? I'll remind you, either way - do not let your child Google 'Lady Feet Bed' without safe search turned on.)

But on the road, he has accepted that sometimes there's internet, sometimes there's not. When I say accepted, I use the term loosely. It's not a wrinkle-free acceptance, but it's there. It may make life cheaper. Gotta love that value.

And speaking of limited internet access... best I sign off before I-

Tuesday, October 5, 2010

An odd looking circle...

It's my day on Hopeful Parents today.

If you'd like to read about poo (again), older ladies (unrelated to poo) and coming home... click here.

Spend a bit of time looking around. It's a wonderful place.

Friday, October 1, 2010

It's been a big week...

This week has been pretty intense in my working life, and it's had its knock on effects in the autistic parts of our lives too.

And they haven't all been bad.

As I walk uneasily through an entirely new professional door, I've had to step aside from the tight, controlling mama world I share with Billy. It's been liberating and completely suckful all at once.

Thankfully, the Silent Partner has been willing and able to step into the breech, and together he and Billy have shared a lot of valuable boy time. On the surface, this has meant a lot of excellent train track building, wonderful time spent on the trampoline and a few video game playing breakthroughs. But underneath, the knock on effects are much more meaningful.

As much as a part of me hates it, my boy is stretching the strings that bind us. He's more resilient, more independent, more adventurous. He's been happy to let me set off for work in the early morning (why, oh, why do we have to start work waaaaay across town at 8am? It is not natural, functional or un-puffy for me or my face). He's accepted perfectly logical discussions about why it wouldn't be appropriate for him to join me at work in a noisy, busy TV studio. Instead, he's been building lists of experiences to share with me verbally, rather than bodily. He, and his wonderful Dad, have been hanging out. Doing stuff.

That stuff hasn't necessarily had the 'therapy outcomes' that almost everything he and I do has. It hasn't been considered in the context of what has come before and what may come in the future. It isn't even close to being a part of the 'big picture'. It's just life. Stuff. Holidays.

He's a bit sunburned. He's tired. He's not necessarily as 'monitored' in a health or therapeutic sense. But he's happy.

And I am... a little discombobulated. I'm not getting the hugs. I'm not the first port of call. I'm not the font of all wisdom and warmth. Daddy is. Theoretically, I'm thrilled about this. Realistically, I feel like there's a wall between me and my wingman. And I'm not sure I like it. In fact, I'd quite like to deface it with spray-painted illegible not-suitable-for-children words.

There's nothing new about these feelings, I guess. This is the journey of any working parent. Though it's highlighted slightly by the autism prism, that makes the boy seek the most reliable solace. He loves with a need that many of us shy away from - knowing that the ones he loves interpret the world for him.

So, for maybe the first time, I'm not his Nicole Kidman in that shitty UN movieThe Interpreter (Widescreen Edition) with George Clooney. I've taken a supporting role while someone else (someone truly able and wonderful) walks with Billy on the front line.

I'm looking forward to our holiday. I'll still be stapled to my computer, but I'll be staring at the ocean or my own Mum at the same time. Mostly, I want the permission to hug and be hugged.

I know that as a person, I want a future where I am capable of earning a living and making a difference. But as a Mummy, I want my koala boy, sleeping warm and dribbly against my shoulder, as well. And I'm guessing my employers wouldn't take kindly to almost seven year old dribble on their studio floors.

Change is good. But, man it's hard.

Did I mention it's been a big week?