Monday, August 30, 2010

I love that movie...

I watched the Emmy Awards today (like I do every year, TV nerd that I am) and became increasingly proud of what I get to do for a living. I know making TV here in Australia is hardly Hollywood, but it's a hell of a way to make a living. To be able to string words and ideas together and then watch other clever people bring them to life on screen... it's a bit silly that I get paid for it.

Watching the Emmys, I kept a keen eye (as always) on my heroes, on the people who write the sorts of things that I dream about... but today there was something special to witness. Something that hit closer to home - the standout triumph of the Temple Grandin movie.

I've recorded most of the ceremony so Billy can see in his future that people were clapping and cheering and genuinely celebrating a story about an autistic person. I wanted him to hear the respect in the voices of seasoned (hardened) Hollywood professionals as they talked to and about Temple. I wanted him to see the joy in people's faces. I wanted him to understand how seriously they were taking autism. I wanted him to know that people made a movie that mirrored the way they understood Temple Grandin - they didn't try to turn her into something 'hollywood'. I wanted him to hear David Strathairn when he referred to autism as a 'mysterious and special thing'.

Now I'm well aware that autism can be far from a special thing for many people. It's a lot of struggle and hardship and impossibilities.  Having accepted that, though, hopefully those of us with the (good) fortune to find ourselves paddling about on the higher functioning end of the spectrum can use our experience to better understand the more profound challenges.

The Temple Grandin movie takes the opportunity (as Temple herself does) to explore autism on a bunch of levels. It shows sensory challenges. It shows intense focus. It shows a unique brain. It shows the ability to see a detail or link that the NT are too busy chatting to each other to see. It shows the disdain of peers. It shows the strength of a loving yet bemused mother.

I honestly gulped my way through viewing this film. It hit me hard, especially watching the twitching jaw of Temple's mother (played by Julia Ormond) struggling with trying to work out which to follow - the instincts that worked with her other children, or the ones that helped her not give up on Temple (despite the pressures of the time). I'm well aware that women like Eustacia Cutler blazed a trail direct to this space where I can blog my random thoughts about being Billy's mother.

I loved the fact that the movie wasn't just about Temple's immense intellect. It was about her uniqueness - the 'good' and the 'bad'. I loved that they showed how her mind worked, in graphics and screen shots as well as in the content of the story. I loved that a person with autism got to be the hero, not the freak.

Well, OK, she would have looked like a freak to many, but not to me. To me, she looked like hope.

I know I'm sugar coating a whole lot of serious life struggle and difficulty. But seriously, how cool is it to have a real life, still living autistic hero. How great for our kids to have a role model who made a brilliant life out of the very thing that made her different. How exciting is it to be able to say to our kids, you can be who you want to be... just like any other kids.

OK, so you might want to be a cheetah ranger or a video game developer or a train designer, and the other kids are heading for lawyer or astronaut... but hey... you can do it.

Because Temple Grandin did.

When I was a little kid, I wanted to write. No-one told me I couldn't. I'm not entirely sure of the grown-ups in my life thought I was serious, but they gave me books, introduced me to authors and encouraged me nonetheless.

Today, I truly feel like I can do the same for Billy.

I freaking love Hollywood.

Saturday, August 28, 2010

Can there be too many resources...

This week I had the great privilege (I always have to spell check that word) of meeting three medical professionals from Vietnam - Dr Trang (paediatrician), Mrs Tra (psychologist) and Mr Quyen (physical/speech therapist).

They are here in Australia for eight weeks to learn as much as they can about working with children with autism. Their trip is supported by an amazing organisation called CLAN (click through for some real evidence of what individuals can achieve with determination, compassion and strategic thought). The founder (I am proud to say) is a friend, an Australian and a mother of a child living with a chronic illness. We met (as you do) when our sons met at pre-school.

There are so many things to say about the experience of meeting these professionals, and they are here for eight weeks, so I'm sure the list will get bigger. The thing that been sitting in the front of my brain, though, is the question of resources.

I'm not sure what it's like where you live, but here in Australia, we're always concerned about a lack of resources for people living with autism. There's never enough. Not enough Early Intervention, not enough school based services, no where near enough anything for autistic adults. And it's true, there are more people than there are places. There are more complex questions than there are answers. There are waaaay more hours in the day than there should be where families are at a loss as to how to help their kids.

And, as always, there's always a glass with some liquid in it, to compare with, somewhere else.

Out of respect for the families and the medical professionals in Vietnam, I'm not going to do a laundry list of what does or doesn't happen in autism screening and management in that country. Suffice to say, it's nowhere near (and I mean nowhere near) what the smallest of regional towns in Australia could manage. Out of respect for our regional neighbours, I'm going to say that I know we all wish we were doing better.

As do the professionals from Vietnam. Their eagerness to learn, their desire for training in as many practical strategies as possible, their peaceful and insistent questioning about how they can use this present experience to build a better future... it's pretty impressive.

It makes me realise how many resources we have in the resource rich end of civilisation. Literally, at our fingertips. On the internet, in the library, at the doctors... love it or hate it, a crazy amount of information is out there. As we were sitting in the staff cafeteria of Westmead Children's Hospital here in Sydney, I was going through my hard drive and copying resources that would be useful to medical professionals. They are things given to me by doctors, therapists, educators and other parents, not even stuff I shouldn't have been able to find in the far corners of the internet at 3am.

Let's get a little perspective on this. I am a kids TV writer. I struggled with anything approaching scientific understanding so spectacularly in high school, that I wrecked my chances of admission to anything remotely intellectual at university. Seriously, I'm not afraid to say my English/French/History marks were pretty near perfect (nerd, I know) but I had to beg (there were tears involved) for the most basic of pass marks in Mathematics. Are you getting a sense of how my brain works?

Well, now transfer that, to the surreal scene where I'm handing resources to medical professionals and going, 'This might be useful in your medical practice in a major children's hospital.'

It's just not right.

The children these people are dealing with in Vietnam are just like my son, or yours. Or someone else's that you know if you don't have a son. You understand where I'm coming from...

These children are brought to the hospital by their parents (just like me, or you, or your friend) because they're in need of guidance, support, understanding. And dedicated medical professionals are working without the kind of resources that I can phone a friend and ask for.

Did I say, it's just not right? Ah, yes. I did.

I'm not known for my love of doctors, and it's all centred around the general impression I get from them that they would rather that
(a) they were anywhere than with me or my child,
(b) I only answered questions, not asked them and
(c) I avoid sharing any thoughts I might have as said thoughts are completely not relevant anyway.

I'm always left thinking that I've just walked away from a conversation that may have held clues to the location of the keys to the kingdom, but I didn't listen carefully enough.

Now, I'm fairly certain (after the last few years adventuring in the world of autism) that those keys probably don't exist, and even if they do, the doctors have no idea where they are anyway. I may even have a bit of a feeling that I could play a part in locating (or creating) said keys. But it's all about the doctors' attitude... and I know that a lot of it has to do with a lack of time. But, I'm starting to wonder if that attitude has something to do with too many resources too.

The doctors have a lot of information, the patients have a lot of information and maybe we're all getting a bit lazy about how we share our understanding of that information. Maybe we're all getting a bit of an attitude (me included, for sure) about the power we ascribe to the people who lay claim to understanding the information.  I'm typing myself up in knots here (I like that...) but I'm hoping you get where I'm trying to go.

This week I met medical professionals who work in very different circumstances to the ones I'm used to interacting with here in Sydney. Like the medical folk I know here, they are deeply committed to helping people (OK, I'm being nice, for the sake of a neat conclusion). In contrast to many of the experiences I have had in Australian autism world, the Vietnamese professionals are not afraid to say there's a lot they don't know. And they are trusting themselves to be able to sort out the nonsense from the useful stuff, as they listen to as many people as they can.

I'm not suggesting there's a straight comparison between my experiences with medical professionals here, and how things work in Vietnam. I get there's a lot of grey and generations of difference in politics and culture and all sorts of stuff I can't possibly begin to understand. I'm also not suggesting that Australian paediatricians should be taking checklists from my personal hard drive.

But... I am saying that autism, and a society living with it on a grand and broad scale is a relatively new thing. Being a new-ish thing, it's a great thing that those with a wealth of evidence-based, empirical type of information are open to sharing that information.

I'm glad that well resourced Australians are finding the time to assist less resourced Vietnamese people. And I'm especially glad that the Vietnamese professionals don't see the fact that they are seeking that information as a position of weakness or deficit.

They are clearly seeing it as an opportunity to clarify, to expand, to question, to learn.

And so, I am proud to be able to say, am I.

It's a steep learning curve, this autism life. And I, for one, thank folk like CLAN for helping me navigate it from a totally different perspective.

Wednesday, August 25, 2010

I have a theory...

This is usually a signal for the Silent Partner to run and hide. If you have a moment, though, hang about. It could get interesting.

It's about autism. Funny that. And it comes after a couple of days of talking to service providers here in Sydney about how we could choose to spend some funding that we have accrued on Billy's behalf. It's part of the Australian Government's Helping Children with Autism Package, and it magically disappears two days before his 7th birthday in November.

Oddly enough, I'm not expecting Billy's autism to disappear at the same time. So, we're trying to make some strategic decisions about his therapeutic future.

My thinking (and it will feed into my theory at some point soon) is that we should blow this money on getting a picture of where he is at, in an autistic sense. I'd like some information - something more specific than our day to day impression that he is an awesome little human.

I'm not much into the comparing game, but it's clear there are many things that Billy does that other almost seven year olds do not do, and many things that other almost seven year olds do regularly that Billy resolutely does not do. And while I don't give a crap in general terms, I'm not conceited enough to think I've got my head across the entirety of human development.

I might be missing something. And that something might end up being important in his future. Some crucial pre-driving skill, or pathway to football watching... I'm hazy on the details.

So, with our remaining funding, I'd like as many assessments as we can afford. I'd like a new diagnosis. I'd like comprehensive reports. I'd like a crystal ball and a hug from a happy future Billy.

I'm not sure if the government will cover a trip to a clairvoyant. So in the meantime, I'll go with the accredited professionals. I rang around this week, and asked a few questions. And I am led to believe that perhaps a lady with a scarf and a dodgy accent may be more useful to me right now.

One psychologist told me he would have to see Billy's Individual Care Plan, to discover whether the professionals supervising his care thought my plans were wise. I told him that I was the professional supervising Billy's care. He said, 'No, I mean the professionals who know about autism.' I'm still wondering who those people are. Oddly, the psychologist didn't respond well to my request to interview members of his staff to see if I thought they were competent to deal with my child. I'm still wondering why.

The other perplexing thing about this psychologist was that he spoke with a heavy accent. Not like a clairvoyant in a cheap 80s TV show, but with a heavy accent nonetheless. I asked him if he would be the one conducting the ADOS, and he said yes. Let me say here, I am a migrant. I am proud and grateful product of Australia's multicultural population policies. But I am fairly certain that an English speaking child with a communication delay is not going to thrive in a language based autism assessment conducted by someone whose communication is expressively and receptively diverse. For want of a better word.

I know I shouldn't have to, but I will say, that I'm not being racist here - simply acknowledging that in this case, difference isn't the best thing lead with. I'm not doubting the man's competence, just his suitability for this task, with my kid.

So, my Google fingers moved on. I spoke to the Autism Advisors in NSW, and they assured me I do have the right to run this game any way I want, as long as the service providers and approved, and the services they are providing are also approved. I called another practice, had a chat and made an appointment to do the ADIR, the parent interview part of an ADOS screening.

I'm not sure if this is the right thing to do, but I figure I've only got a couple of months until the autism disappears... I mean, the autism funding disappears, so I'd better give it a crack and see what we learn.

Here's my theory.

Just like my experience with the psychologist, I am starting to believe autism is not about core innate impairments in people. It's about the circumstances surrounding the people. It's not about an absence of ability, it's about impediments to that ability being uncovered and exercised.

The extension of that position, then, must be that the people who know the autistic child the best, should be the ones driving their intervention journey. That person, generally, is a parent or carer. The one who sees the subtleties, who feels the quakes, who anticipates the explosions...

Dealing with autism is not an exact science. It is an art in many ways. A dance, a sculpture, a song... it is tactile and visceral and emotional. Living with autism does not have an evidence base. It is all anecdotal and completely experiential. While they are incredibly important, planning for your autistic child's autistic future can't just be about assessments, trials, age level approximations, degrees of difference and points on a scale.

We need the scientists and the researchers and the doctors - for advice and guidance. Most of all, we need them to listen to our anecdotes and learn from our experience. And we, in return, should try not to make a bad face when they insist we vaccinate (for the greater good) or give our kids antibiotics for a cold. We could all engage in a conversation, perhaps... wouldn't that be interesting.

Like any parent, I have a spidey sense about my kid. Sometimes it's about an oncoming throat infection. Sometimes it's about an approaching vomit (remember the story about catching a vomit in my hands when Billy came to a meeting with me?). Sometimes it's about a clairvoyant psychologist.

I've totally messed that up, haven't I?

Sunday, August 22, 2010

The power of Thomas the Tank Engine...

Today, Billy and his friend went to a movie.

Perhaps, I could write that again... Today, Billy and his friend went to a movie.

I never thought I would write a sentence like that, unless I was in some delusional denial fantasy type situation where everyone knew someone was going to tap me on the shoulder and yell, 'Psych!' before running away giggling.

But seriously, I'm not making it up. We sat in a cinema this morning with another mother and son combo, and we saw a movie from beginning to end.

Now, don't get me wrong. There was a lot of unusualness going on (as so many of the cinema foyer dwelling glama-rama-mamas of perfect children called Olive and Hunter will attest), but I'm calling a win on this one. On so many levels.

Billy has a friend at school, whose name I won't mention as I may not respect my own child's privacy, but seriously, I get the concept. He is a beautiful child, inside and out. A child who has gone out of his way to shepherd Billy through many important experiences at school. He's a thinker, this kid. He understands things I'm still struggling with at 42 (and isn't that supposed to be the meaning of life...?) He  is a friend, and he has a 7 year old meta-awareness of the power of friendship that brings out quite stunning behaviour in him. It's part mother hen, part bemused bystander, part therapist.

Billy chose this boy to come to the movie with him, and despite the fact that most seven (or almost seven) year old boys have bid a wistful farewell to Thomas and Friends, the date was made. The desire to have his friend there was so strong, that Billy was motivated to write an invitation... writing is not a favourite pastime of Billy's - typing, yes. Handwriting, no. But he did it.

The past week has been full of, 'Oh I can't wait to go to the cinema!', which was freaking us both out a bit because he's never been before. What was he thinking the cinema would be? Given that his favourite way to watch Thomas is with a remote control in his hand, repeating the same 5 seconds over and over again... we were a little worried about his expectations.

Thankfully, an episode of Humf came along, where Uncle Hairy took his girlfriend Flora, Wallace, Lou and Humf to the cinema. It was a social story played out with cute, furry monsters. Hats off to the British who really know how to do creative kids television without forgoing the content.

This morning, despite a post-election hangover (me... what kind of a parent do you take me for?) and a short night's sleep (Billy, waiting for me to get back home from next-door's election night sorrow dampening party... hung parliament, long story), we set off across town for the movies.

We got there and were engulfed in a sea of toddlers (why do people think toddlers will like being forced to sit still in a dark room for an hour??) and the odd random older sibling. There was a balloon artist (lot of swords and flowers) and many, many mothers drinking very tall lattes. They may or may not have been attachment parenting their perfect children called Olive and Hunter. I tend to blank them out these days.

Billy met his friend with a huge hug. We waited for the majority of the audience to take their seats, and started to walk down the blue (cute...) carpet. Then... Billy spotted him. His nemesis. The Fat Controller. Who knew that Sir Topham Hatt was the source of all evil? Well, clearly, Billy knew. Because he proceeded to melt into the mother of all regressive, catatonic zombie states. He disappeared to far corners of the foyer (hard as it was oddly circular) and took up an attractive foetal position under a Despicable Me cardboard display.

Awe-some. Loving it, I sent his friend and his mother into the cinema in a cheery tone (you know that shaky hysterical 'everything's fine, minor glitch' kind of voice) and began telling Billy that big boys don't usually choose to hide under little yellow cardboard humanoids. Clever move, on my behalf. I would have been better off reciting election results at him.

Balloon artist (I love you, whoever you are, dude) came to my rescue. I backed off, suggesting I would look through the door of the movie theatre to check where the evil yellow waistcoated man had taken himself. When I returned, Billy and the balloon dude were playing tickle fencing with balloon swords, and making their way to the rapidly closing door of the theatre.

We managed to make it down the aisle, spotted our friends who had cleverly chosen seats that backed onto the end of the aisle, and perched like crazy people on the carpet behind them. Billy assumed foetal position number two right about then, as The Fat Controller began an inane speech about kids telling their parents to turn off their mobile phones lest they scare Thomas and Percy (the phones, not the kids... or their parents). I didn't care, because the nasty man was scaring Billy. Why? I don't know, but the stares from the mothers of Olive and Hunter were enough to let me know that they weren't about to offer any suggestions.

Then, miraculously, the Fat Controller stopped talking. The room went dark (not so good, but thankfully less tragic than I thought) and the movie began.

Billy slowly unravelled a limb at a time, tentatively unplugged his ears and climbed onto my lap. Billy saw Thomas and Percy, and his face broke into a smile. As the opening titles dissolved into beautiful CGI Island of Sodor establishing shots, Billy's friend looked over the back of his seat. He begged Billy to climb over the back of the seat he'd saved for him... and Billy did just that. For the next hour, they sat giggling together completely and utterly engaged in Misty Island Rescue. They laughed and got worried. They yelled at the screen and they looked to each other for reassurance. All in all, an awesome movie experience.

It got even better at the end of the movie when all the kids were given a really cool goodie bag full of actual toys - DVDs, trains, Thomas books, Thomas magazines, Thomas Apple 'juice' and a movie poster (the best bit, oddly, for both boys).

It was, all in all, a great experience - multiple assumptions of the foetal position aside. I know I say it a lot, but seriously... this kid amazes us every day. He tries so hard, without ever ignoring or suppressing his own needs. He's learning his boundaries in a truly organic way, and in times like these I wonder if it's even a little easier for him because his limitations jump out and bite him with such monotonous regularity. He gets a lot of practice at understanding himself.

We are so very lucky to have friends like Billy's buddy and his Mum. We are lucky to have opportunities like today, where we can sit in the foetal position on the carpet, and only have to deal with the stares of the untroubled parents (and not the shining torch of the cinema staff). We are lucky to have a boy like Billy.

It mightn't be easy to watch your child struggle with what should be a pleasurable experience. But, let's face it, whatever I might be feeling, it's ten times worse for Billy experiencing the struggle. I can recall maybe five or six moments in my life when I felt so bad I wanted to curl up in a foetal position and hide my face... my tiny man has five or six of those moments a week.

I don't want to minimise the tense moments in the lives of Olive and Hunter, or the worries of their perfectly presented parents. But I can't help feeling that I've got a better deal.

Billy's deal doesn't seem quite so sweet, but Thomas the Tank Engine does get him through the tougher moments.

Wednesday, August 18, 2010

It's pretty irrational but...

There are a few things about living a life with autism that I really don't like.

I can handle most of them with platitudes like, 'He can't help it' or 'It's the autism, not him' or 'If you keep on staring at my son with that shocked fish look on your face I will be forced to stab you'.

But there's one I've struggled with all along, and it can't really be handled. Well, let me qualify that fatalist statement. It's really difficult to handle, because what people are doing is pretty much what I demand they allow Billy to do - they are responding naturally.

In pre-school, Billy didn't talk much to his peers. He attended under sufferance, talked to the adults when he had to and kept a safe distance on the edges of rooms, playgrounds and the dreaded circles. It was an integrated setting, so he was by no means the only child with a disability, and he was also by no means the most 'impaired' child in the room. He was, however, deeply overwhelmed by the expectations, the communication, the children, the everything... and that meant not giving much of himself.

He was the quintessential mystery wrapped in an enigma. As a consequence, the NT kids, if they spoke to him at all, spoke to him like he was a baby. In that sing-song-y questioning tone we use with the non-verbal infant. 'Aren't you a clever boy?', 'Do you know how cute you are?' kind of stuff.

He would seriously stare at them like they were demented. But when you are on the outside, looking at that WTF stare, it kind of reinforces the perception that you are not being understood. Consequently, kids (and lots of adults) chose to increase their volume, get closer to his face and re-iterate their inane rhetorical question in a slightly re-worded fashion (thus making him suspect he'd just been asked a second question).

Billy generally walked away and played trains, presumably pondering the abject oddness of the neurotypical. We tried to show him that the kids were being kind, empathetic, adaptive - all good things.

But without saying it, it was clear Billy was thinking, but why do they think I'm a baby? Given Billy's cellular fear of babies (noise, unpredictability, tendency to make people ask lots of loud squeaky questions), the idea that people think he might be one is, to say the least, disturbing.

Hippy school is a whole new kettle of fish. Awesome fish. Fish called acceptance, respect, boundaries, flexibility, individuality, creativity... Billy has, unsurprisingly, thrived in an atmosphere where children are children, who are concurrently capable of reasoning better than most adults. He responds because he knows there is an understanding of his sensitivities. It's clear because it's stated. It's clear because the same understanding exists for every person in the place. He is much better able to face the slings and arrows, because he does not fear. He knows he doesn't need to fear.

It's still loud, and he can walk away. It's still intense, and he can ride through the intensity in ways that make sense to him. And... there are still people, adults and children who talk to him as though he is a baby.

I don't like it. He doesn't like it. But there's nothing 'bad' in what these people are doing. Just like there wasn't at pre-school or Early Intervention or in odd appointments with inappropriately experienced therapists. They are just trying to get through, nicely, in the way society approves... softly, sweetly, open-heartedly.

As he ages, I'm guessing it's going to become a bit of an issue for him. At the moment, he simply disengages. Maybe he's unsure of the appropriate response... maybe he's offended. I don't know.

If I'm there, I smile weakly, give him a minute to respond, and if he doesn't I repeat the question word-for-word in a more functional tone. In my head, I'm thinking... he's smart, he's passionate, he's curious and intellectual... he just doesn't speak your (social) language...

But then, the sing-song-y people aren't even speaking their own language.

I can understand his confusion.

Sunday, August 15, 2010

Dear World...

I'm more and more aware that I'm not always going to be around to fight (anticipate/predict/obsess over) Billy's battles. Like any parent, there will have to come a time, by choice or not, where I let him go forth and conquer... all by himself.

While my confidence is building in him, minute by minute, I'm less convinced of the compassion and emotional intelligence in the rest of the world.

So... I'm writing you a letter, people... I'm talking to you... but you don't have to look right at me 'cos I totally get that it's confronting sometimes.

I'll make it quick, because there's no point in sugar coating this stuff. This is my version of 'All I Really Need to Know I Learned in Kindergarten', a book I loved and really believe in. I'm revising its message on the basis of my Mum's advice and my own life experience...

So... everything I need to know, I learned from autism.

  1. Be nice. And if you can't be nice, be as silent as possible.
  2. Think, before you judge.
  3. Give people as long as possible before you figure they can't or won't answer your question.
  4. Understand that being different isn't a challenge, or a choice... simply an expression of the being.
  5. If you feel like laughing at someone, consider laughing with them instead.
  6. If you can, ie. if you have the capacity and the skills, get over yourself.
  7. Live in the moment and be open to what happens.
  8. Don't be too loud, too fast or generally obnoxious unless you really have to be, and encourage your children to be the same.
  9. Know that what you have is awesome, but not everyone else has it.
  10. Be nice. Did I say that already.

My kid is great, and lucky and lovely. And he has significant challenges just getting through the day without having his heart stripped of all its capacity. Sure it's not terminal. But it feels like it sometimes. It takes a compassionate, emotionally intelligent world to let the Temple Grandins of this world rise above the idiotic standards by which competence is measured.

I know we are fortunate to live where we live and be loved by so many. I hope against hope that other families like ours can be afforded the same respect.

And if you think I'm being overly dramatic. Bite me.

Hang on... I just broke my first (and last rule). Ah crap, I hope my Mum's not reading this.

Wednesday, August 11, 2010

It's time for a poo talk again...

I'm sorry... please feel free to click back to facebook or election coverage, 'cos I'm going to talk poop.

I can't remember (and I'm too lazy to search my own blog... a indicator of my true nature) if I mentioned that both Billy and I started taking something called Motion Potion.  I just googled it to find the link and found out there's a band with the same name.

Should I mention that we are not taking the band...? Seriously listen to their music... we have standards.

The Motion Potion in question here, was recommended by a friend. She knows her health, and she talked in glowing terms about MP's effect on her digestive system. It's all natural, with nothing dodgy in its ingredients. It's formulated by naturopaths. Yada yada. I also liked the fact that two other people mentioned Motion Potion in the days after I first heard about it. Totally by co-incidence. I am fully aware that spooky synchronicity is no basis on which to experiment with your child's health but seriously... we were getting desperate on the bowel front.

So, we started stirring this green, spicy dirt-like substance into juice and drinking it. I hoped it wouldn't hurt.

Before I reveal the results of our Motion Potion experiment, I need to tell you a bit about the events leading up to Billy being diagnosed with Transverse Myelitis exactly three years ago today. I promise I'll be quick.

The waiting rooms of therapists offices are intense places. We mothers (usually) try to be nice to each other, but there's a lot at stake. You peek at other Mummy's kids out of the corner of your eye, hoping to see them do something worse than your kid does. You try to give loving supportive looks and comments, but you know the other mothers are doing the same to you, so it's kind of a vicious circle of nice lies.

And in that hot bed of 'He's come so far...' said through gritted teeth as we waited for our appointments, parent after parent would tell me I should see a particular homeopathy/kineisology clinic. Mothers, and the odd nanny and even Dad would sing the praises of this clinic. Never ending stories of how their kids had developed - amazing eye contact, language surges, social improvements, the whole autistic nine yards.

So, we caved to the Mummy pressure and gave it a shot.

I look back and I am more critical of myself than anyone. In every aspect of my life, but especially in relation to Billy, I am ruthless. I research. I question. I turn things over and over and over. And for some reason I will never quite understand, I did not question this man.

I let him 'assess' Billy. I let him 'prescribe' homeopathic immune detox 'treatment'. I didn't ask any questions of any substance. In my defense, I did try a little, but the answers made no sense. So I figured I was on the wrong track, and I just went ahead with his recommendations.

One week in, we saw improvements in language, for sure. Two weeks in, we saw maybe a little more. Three weeks in, Billy's behaviour fell apart - night terrors, meltdowns, language regression... Bizarrely, it turned out this man lived in our street, and at a street party he told me to give Billy Phenergan in the middle of the night to calm the night terrors. Why did I not question a man who suggested synthetic sedatives to aid in a homeopathic detox??  By week four, it got to the point where his therapists staged an intervention on me, suggesting now was the time to enrol Billy in ABA.

Anyone who knows Billy personally, and knows ABA would know how insane that would have been.

At the end of week four, Billy got a stomach bug, and that stomach bug attacked his spine, and the rest is neuro ward history.

When the doctors diagnosed Atypical Transverse Myelitis, they asked whether Billy had recently had an external assault on his immune system. 'A what?' we asked... They said his immune system was shot, stressed, under attack... despite the fact that they could identify the bug that made him sick - a simple staph infection, something was not adding up.

We asked the homeopath to speak on the phone to the neurologist (who had impounded the homeopathic drops after we sheepishly mentioned we had given them to him). He hung up. We have no evidence that the homeopathic drops did anything to Billy - good or bad... but let's just say that man did not leave my psyche in a positive frame towards homeopathy.

Now, I love my herbally berbally stuff as much as the next city hippy. I really do. We have a de-chemicaled house. I've got a worm farm. But that whole experience scared all of us away from homeopathy, naturopathy and biomed for a while.

This year we've made a concerted effort to fight the fear beast with logic, and we've seen great results with no dairy, cod liver oil, calcium/magnesium supps and ASD vitamins from Lee Silsby. But the poo issue has remained. Constipation (better since the no dairy, but still needing litres of prune juice), mega colon, surprise poos, many many undies sacrificed to the poo gods. My days (and Billy's days) revolved around poop disaster minimisation. It was crazy.

So, despite my fears of the 'N' word (naturopath), we gave the Motion Potion a go. It took a while to get back here, didn't it? Sorry about that. Darned words keep pouring out...

I don't want to use the word miracle, since I'm so scarred from catholic school as a child. But... seriously,  after a couple of days of clear out (we will not speak of this again), we are in middle of the Bristol Stool Chart territory. And we're still there. Not one pair of undies has been consigned to the plastic bag of shame and chucked in the wheelie bin. There's half an old bottle of prune juice in the fridge, untouched for weeks.

Last weekend, we gave Billy a haircut. We've done this at home since he was 18 months or so, since we figured if there was going to be blood curdling tears, they may as well be in private. On Sunday, we restrained Billy as usual (in Mummy's arms, of course) and the first snip was met with... 'Hey, that doesn't feel bad at all, Daddy!' He sat with free arms, flipping channels while we cut his hair. No tears, no protests, no blood curdling anything. To be honest, I felt like a bit of a knob, sitting with Billy on my lap being covered in hair... he didn't need me there at all.

We are seeing language advances, social interest (he is the scooter dude now, practicing whenever he can), great eye contact... none of which we were actually looking for...

And I can put m hand on my heart and say I think about Billy's poo for less time per day than ever before. Sometimes, I even get to think about my own poo.

But I so won't go into that here. I will only say that Motion Potion is working its magic on my insides too.

This is so not an ad for a product. It's more a line in the sand.

I'm almost sure we'll have more poo issues. I'm prepared for them (kinda). But for all my autism Mummy and Daddy friends, it's a chance to say...  things have got better. One of our challenges is no longer looking like a T-Rex in our minds.

It's a 'this too will pass' moment.

Why did I use that phrase in a post about poop...?

Saturday, August 7, 2010

I have to keep watching...

Tonight, just before bath time, Billy was sitting at the table with his headphones on, watching his new favourite thing on YouTube - Theodore Tugboat.

Though many of you will not need this string of thought, I will fill in how an Australian boy in 2010 could possibly be interested in a Canadian TV show that ceased production in 1998.

YouTube, home of the quirky, can pretty much spit up a morph of any two ideas you can think of... for the uninitiated... let's play. Um, choose two random words like...

Dogs and lollipops
Motorbike and carousel
Tomato and phone

I swear I just pulled those combinations out of my head... just now. Click on the links, and behold the joyful oddness.

Billy, being of the mind that loves to dig as deeply as he can into the things that interest him, looked on YouTube and found episodes of Thomas the Tank Engine that had been re-cut with soundtracks from random other TV shows. Sometimes, it's Winnie the Pooh (the enemy of sleep - a whole other blog one day), sometimes The Three Stooges and sometimes... it's Theodore the Tugboat.

So, even though we struggle with getting him interested in important stuff like reading a clock, simple addition or eating any meat other than chicken... YouTube has now got Billy very interested in all things Theodore Tugboat.

The first challenge that goes along with this, is his requests for DVDs. We are trying very hard to explain to our child of the new milennium that DVDs were not invented in 1998, and Theodore Tugboat failed to garner the kind of audience that would encourage a major player to do a vintage 'Sonic the Hedgehog' style transfer from VHS.

The second challenge is the depth of emotion in Theodore stories. Tonight, Billy sat watching Theodore Tugboat with tears streaming down his face. One of the tugboats has been caught in a storm in the great big harbour and was separated from the other tugboats. Billy, the great lover of the family unit and hater of things that 'go away' (leftover vegetables, un-retrieved dog balls, even bath water on a bad day) wept for the temporarily lost tugboat.

We asked him if he wanted to turn it off. Through gulping tears, he said no. He insisted on watching he story to the end, despite serious ugly-face crying spasms. When the story resolved (thankfully, the clouds cleared, the tugboat found its friends and they all chugged happily about in the harbour again) he wiped his tears, took off his headphones and turned to us.

'I have to keep watching. I have to feel it all the to the end', he said. 'I don't need your help'.

Then he got up, and started to take his clothes off and skipped off to the bathroom.

Then he stumbled back in a moment later with his jumper wrapped tightly around his head.

Through mouthfuls of hoodie, a little voice said, 'I think I need your help now.'

Friday, August 6, 2010

Over at Hopeful Parents today...

I'm proud to say I'm blogging over at Hopeful Parents today.

Come on over and read stories from all sorts of parents with all sorts of special kids (and my latest contribution to society... I used the word 'penis'.)

Billy laughed.

Sunday, August 1, 2010

Community (not the TV show)...

Last night we had our eyes opened, and our lungs burned.

The lung burning was due to a piece of toxic masonite some bright spark added to a bonfire at our street party. And it wasn't really that bad. I think having pulled all the chemicals out of our house, our systems were a bit stunned by the smell of singed fake wood. It was a small price to pay for the other amazing things that happened last night.

We moved into this house five years ago. We'd spent three months renovating it, and renting in another suburb, so we felt pretty much at home by the time we moved in. This feeling was helped along when one of our neighbours appeared one day with a piece of paper. It was a contact list for the street - a cul de sac, where many of the residents were the first ones to live here. They had built their houses together 40 years ago, and in some cases, their grown up children had chosen to buy in the street as well. The list has everyone's phone numbers and notes on who the nurses are, who can babysit and who has handyperson skills. No-one's in anyone's face, but there's always someone to pick up your mail or feed your cat if you need.

Twice a year, we have a street party, up at our end of the street. When we first moved here, Billy was almost two, and he was deep in the dark days. He was frightened of everything and everyone. He refused, point blank, to leave the house during the street parties - even when Santa Claus arrived with a present just for him.

As the years went by, and the therapy took hold, he would watch the party from the living room window. Then he would sit in the front driveway watching, but not participating. Over the last 18 months or so, he's edged closer and closer to the party action. Last night, he took a deep breath (not a great idea given the bonfire situation) and jumped in with both feet.

By 5pm, the sun was setting, and children materialised from nowhere, complete with scooters and skateboards. I was a bit worried, because Billy had been excited about the idea of the fire and marshmallows and sparklers. From his position at the front window, Billy turned to us and said, 'Can I ride my scooter at the party?'

And that, as they say, was that.

While the adults watched things burn (why is a fire so darned interesting to look at??), the kids toasted marshmallows, rode scooters and fought good naturedly over the two very impressive skateboards. By some mysterious order of parent hoo-doo, one adult would stand up between the grown ups and the kids and supervise the whizzing about... (which got faster in direct proportion to the amount of marshmallows consumed). And in the middle of all that whizzing, was Billy.

Now, at the beginning of the evening, Billy's whizzing was kind of clunky. He couldn't quite work out which foot went where, or indeed, how to make the scooter move forward in anything resembling a scooting motion. But, and it's a but I love (unlike my butt which I would like very much to disappear), Billy watched the other kids like a hawk. He would periodically retreat to a neighbour's driveway, where he would practice his moves alone. That, and occasionally crash his scooter into a carefully pruned collection of lilly pillies. He would announce to the assembled crowd that there had been a terrible crash, and go into rescue mode.

After each rescue, he would join the crowd of sugared up scooterers, and each time he did, his scooter skills were improved. Seriously, by the end of the night, he was as good as the kid across the road. OK, that kid is three and a girl... but the improvement was spectacular.

Even more impressive than Scooter University, was the skateboard incident. Or incidents. First, after mastering sitting down skateboarding (and discovering that our end of the cul de sac is actually the peak of a decent hill), he befriended a younger boy. That's a miraculous sentence in itself. Two years ago, the sight of a younger child was enough to make Billy turn tail and run. And be-friending was something in sitcoms. But last night, Billy and this younger boy experimented with how far down the street an unaccompanied skateboard would get, if you sent it flying under parked cars. For ages... for so long that a couple of deputations had to be sent off down the street to collect the two boys and the skateboard.

Then there were the games of marble run, the watching boys play computer games, the requests to borrow toys from complete strangers, the full participation in a treasure hunt and the lovely moment when a bigger boy realised Billy hadn't shared in the chocolate (treasure) haul and offered him a MIlky Way.

As I watched these things unfold, I drank my beer like a grown up. I spoke to other adults... about community things like our brand new local shopping centre and how fast people drive up our street sometimes. Occasionally, someone would sidle up to me and tell me how proud they were of Billy. Many of these people, I thought didn't even know him, or us, or that he was autistic. But they did, and they felt really happy to talk about it.

They were proud because they had seen, in years gone by, that Billy didn't want to be anywhere near their kids. They were proud because their own kids finally had an 'in'. They were proud that their street had a good story.

And I was proud too.

Last night, I felt like a good parent, among good parents. Nice people, nice experience... our community.

Not so proud of our toxic smoke production, but hey...