Friday, May 27, 2011

Stories and journeys and lawyers. Oh My...

It's been much longer than I would like between posts, as Blogger needed me to clear my cookies. In true passive-aggressive internet style, it didn't actually tell me that. I had to spend the week ineptly googling until I worked it out.

No matter, I am here.

It's been a week of illness. Billy kindly shared his bug with me, and I have to take my hat off to the little man's coping skills because it's a stinker. It's one of those throat bugs that makes moving your head painful, and being the vomiters we are, it's been a little unpleasant. It's all coughs and sneezes now (Billy's coughs and sneezes, as other folk are not able to cough or sneeze around him without him retreating to his inner cave in tears.)

Along with the sickness, it's been a week where we've thought a lot about the parents that we are, and the parents that we want to be. I'm not able to include the back story to this examination, but I'm glad (in a perverse way) that it has happened.

And this is why.

I'm 43 this year. I am (if I'm lucky) somewhere between a half and two-thirds of the way through my life. I feel like, around now, It's timely to look back and make some observations about my 'story'.

Don't get scared, now. I'm not going to take you on a long meandering journey through my life. In summary, here are some of the dot points I carry around with me - migrant kid, Irish in Australia, always wanted to write, outsider in an amenable way, fortunate to have great friends, lucky to have found a really decent partner, ultimately privileged to be a mother.

I have a mind that burns, and a heart in constant conversation with the brain. I churn through emotions, and each one of them leaves a mark. I've made some intensely stupid decisions in my life, but overall, I'm fairly proud of what I've done and what I've become...

Before Billy, my life was focussed on little kids. All the work I have done has been about making the world a better place for little kids - through theatre, through television, through words in general. I'm really, really proud of that, even though it has often meant a lot of intense advocacy and tough discussion. I really don't think we live on a world that has genuine respect for the immediacy of childhood.

When Billy came into our lives, my world came full circle. I loved everything about parenting from the start. Not that it is all easy, but it is definitely meaningful, rewarding, important. It is, without a doubt, the ultimate gig to me.

The only thing that autism has done to my perception of parenting, is intensify everything. Most parents find it hard to watch their child struggle with everyday kid tasks. When your child struggles with 90% of everyday tasks... it's hard more of the time. Most parents are proud of their child's achievements. When the achievements need so much leg work before they come to the fore, you feel you've earned a little extra pride. It's also given me an opportunity to use the skills I had before I entered autism world, in a slightly more obvious way.

So, along with the kids TV, I've always done, I've been able to write the songThrough My Eyes and put together the book - The Autism Experience. And I'm very proud of being able to do something positive and practical towards promoting autism awareness.

Why am I banging on about all of this?

Because it's all about my story. And that makes me think about Billy's story.

In his short life, he has faced more challenges than I have in mine, for sure. Between his medical issues and the individual idiosyncrasies autism brings to him, Billy has a lot going on. You wouldn't know it to talk to him. He has the odd moment of sadness (I have a mental picture of him with his head in his hands this week, crying and saying, 'it sucks more than anything, Mummy!' as evidence), but mostly, he is a really happy kid.

It's a brilliant thing that his story so far, if he were to tell it, would be a happy one filled with love and trains and holidays and animals and wrestling with friends. A lot of that can be attributed to him and him alone - the true beauty of his temperament and depth of his passions. The remaining bits, I think, come from the sheer duck-like leg paddling we do as his parents, to keep his life on an even keel.

Unfortunately, the outside world doesn't always respect the value of this graceful on the surface, comic-ly energetic behind the scenes parental activity (remember, I'm not that coordinated). Like most autism parents, we get our fair share of 'just make him do it' and 'he doesn't need any of that'. When it comes from family or friends, you can handle it with a smile and a hastily assembled voodoo doll or two. When it comes from people in a position of authority - doctors, educators and the like, it's not so easy. In fact, it's downright dangerous.

We, as a family, have entered a new frontier, and it's not full of pretty grasslands and horses. It's full of lawyers and legislation and long, detailed letters. It's where we're learning to be aware of the consequences of every action, every word and every single choice we make. In true Little House on the Prairie fashion, there are a few cowboys, snakes and Nelly Olsen types as well.

Why are we here? I hate snakes.

We are here because of Billy's story.

Billy's story will show that his parents fought for his rights, along with their own. It may show that we won, it may show that we lost. That, we don't know yet. We do know it will show that in Billy's world, fighting for what you believe in, is the right thing to do.

He will be able to say, when he was a kid, his parents thought he was important enough for them to risk weathering a few crappy storms. It will also show that his parents believe that the system should never come before the rights of a vulnerable individual, and that there are laws to back up our feelings - locally, federally and internationally. It will show him that if he chooses to do the same in his life, his parents will be totally behind him.

We may not do this right, but we will do our best. We will do it with honesty, integrity and the odd stiff drink.

It's not about the destination, it's about the journey and the reasons why we take journeys at all.

I would quite like to return to the days when journeys were about hotels and pina coladas. Maybe I should write that into my story...

Saturday, May 21, 2011

The shock of the poo...

This week, we've taken a step backwards in our war with poo. We are officially losing the war with poo. We are being defeated by poo in the war with poo.

I do not like poo. Poo is not my friend. I would not invite poo to my house for a sleep-over. Poo stinks.

Despite this, in the last two weeks, I have seen a lot of poo. On top of this, poo has chosen to invite its friend vomit without my permission (which I would have withheld, by the way). To be fair, this wasn't completely unexpected, but it's definitely an unpleasant turn of events.

Doctor Poo put Billy on a long course of osmotic laxatives to try and regulate the action of his bowel. Laxatives are generally likely to lead to more poo, and these fellas definitely did their job. They didn't deliver pleasant poo, either, if there is such a thing. It was a lot of defiantly unpleasant poo. The drunken footballer of poo.

There was a lot of other improvement associated with the actions of Doctor Poo, so we accepted the unpleasant poo as a consequence of improvement. I was going to say we 'sucked it up', but I decided against it. Not a mental mage I want to take to bed with me tonight. Let's just say, we had an uneasy truce with the poo.

Along with the long, thin, rivers of poo, Billy has been randomly vomiting after taking the laxatives. Five times in two weeks, not long after taking the 'salad water' (Billy hates salad, the laxatives are dissolved in water, therefore the medicine will heretofore be known as 'salad water'), Billy was struck with sudden stomach pain, a wave of fever and then delivered a giant hurl. As soon as the hurl was done, the pain and the fever were gone.

Early this week, Billy had an awesome playdate with some beautiful friends. It went so well, we had another one the next day. Longtime readers will know what's coming next - Billy got sick. For whatever reason (immune dysfunction, bad luck, karma for my teenage annoying-ness), Billy + other kids = illness. So, the second half of this week involved a slow decline into throat infection. Along with the random hurls, we were in quite a state by Friday.

Dr Murphy's Law says, 'on the day you need a doctor that knows your kid, said doctor  or doctors will be resolutely unavailable'. And so it was that Friday was the day when we needed to call in the medical cavalry. A replacement GP talked to a replacement GI and x-rays were ordered.

Poor old Billy, surfing waves of pain-nausea-fever, handled an abominal x-ray and ultrasound like a seasoned champion (thanks to the staff at Chatswood Radiology... seriously amazing folk). No obstructions, no odd bowel pathology, no reason for the pain or the vomit. No reason beyond the throat infection he was clearly fighting...

Hmmm... WTF?

Then, on Friday evening someone clever asked whether Billy had a problem with lactose. He, like many autistic kids, does indeed have a problem with dairy products. From around the time when his language stalled, he would randomly hurl after drinking cow's milk. He would also get very constipated if he had a lot of dairy. We haven't done allergy testing, and we should add it to the list of wallet emptiers, but we did make the decision to replace dairy with calcium supplements and a high non-dairy calcium diet. The random hurls stopped, and the constipation lessened slightly. So yeah, we feel like he might have an issue with dairy.

And the laxative he was given by Dr Poo is not intended for the lactose intolerant.

We stopped the laxative, and our relationship with poo deteriorated even further. I'm just going to say, this weekend has been one where we are grateful to not have a massive social life. People might be scared away by the fact that parts of our house smell like the gates of hell. We are very grateful to the inventor of the washing machine.

As with so many things in this autism game, it's like unravelling a ball of spaghetti. What caused what? Which thing came first? What's 'just autism' and what's approaching catastrophe? Is there a difference? Does anyone actually know?

All I know is that we are counting the hours until we can phone Dr Poo and see what he thinks. We will also be buying a bunch of new underpants.

I am thinking of buying camouflage undies (despite my philosophical objections) as a tribute to the poo wars. Or maybe, some flowery ones to give the poo the idea that we, together, are one with the universe. Or maybe just some plain white underpants which I will remove from my son, place on the end of a stick and wave, surrender style, in the wind.

After they've been washed, of course (or we may have even fewer friends).

Thursday, May 19, 2011

You know...

Over the last month or so, I've been annoyingly present in the media in Australia.

It's a price we have to pay to get the book out and about, but in the process I seem to have attracted one lone, angry hater. Because I haven't got enough to handle.

I got hate email, following one radio interview. This blog has been repeatedly defaced. And all because...

Who knows? The only thing that has been communicated to me, by the bravely anonymous emailer is that I say 'you know' too often when being interviewed.

The overwhelming feedback from the book has been amazing. Really positive. And given that it is the collective work of many, many women, I couldn't be prouder. We thought we had something to say, and we said it. We set out to achieve something that hadn't been done before, and we did it. We found incredible support and resource within our number, and wanted to share that with others.

We've heard wonderful stories since it was released. Healing in families, connections made between neighbours, children respected rather than vilified for their difference. The diversity of stories in the book has collected and presented a diverse vision of autism and its impacts. This, in itself has meant we've managed to connect with a wide range of people.

All lovely stuff.

And alongside this loveliness, I'm accepting that if you hang yourself out there, you are going to get whacked.

But really... If people are more worried about my vocal repetitiveness than the fact that increasing numbers of children, every day, around the world, are being diagnosed with a lifelong disability... then I've also got to accept that those same people are well and truly detached from any kind of compassionate, active collective, hope for the future.  And that they should, perhaps, get a life.

I hereby apologise for being repetitive. It is something I live with every day, given that my son holds the transcripts from endless Attenborough documentaries and Thomas episodes in the very front of his brain. I am also not a radio presenter. But, whatever, sorry for saying, 'you know', you know?

However, I will never apologise for trying to raise awareness, make change and fight for Billy and those like him.

He didn't ask for this disorder, nor did we. I do not want more families to have to deal with autism, if it's preventable. And I believe it is preventable. At the very least, I think we should find out as much as we possibly can, as reliably and as quickly as we can. I think we should stop passively harming, start actively listening and get on with fixing what's fixable. I think we should live autism awareness through real respect, legislative and societal change.

And if I get abused while pursuing those things... It's nothing compared to the snide comments, pitying looks and ignorant judgement my son faces each and every day. From passers by, from peers, from professional adults who should know better.

Just as I have the privilege of journeying beside some brilliant folk, professionally and personally, so should Billy. If I can do anything to clear the road of unthinking detritus for him, I will.

He is different. He is not less. Having a hand to hold on this journey is not a weakness, it's a gift (for both of us).

This is not about me, and it's not just about Billy. It's about all of us. If you, like the hater emailer/defacer have the 'good' fortune to live in a world untouched by preventable, chronic disease then I would suggest you should be more (not less) inclined to listen to the message rather than take pot shots at the messenger.

Or not. You know...

Friday, May 13, 2011

A late Mother's Day wish...

After almost eight years of being a mother, I've had lovely breakfasts in bed and chocolates and magazines. This year, I have a couple of other wishes.

There's rarely a chance to express wishes like these, and I know I'm preaching to the choir here, but just in case anyone's got a giant glittery wand, here goes.

Living a life with autism means that other people's behaviour has a huge impact on you. Not just in that, 'wow, what an obnoxious family' kind of way - in an actual, screw your entire day, give up your plans or endure a truly crapola experience kind of way.

So, in the spirit of including people with autism in your behavioural code... here are some suggestions I have for the neurotypical among us. I am going to try to be pleasant about it, but seriously, some days it's like being forced to spend time with the leader of the political party you don't vote for. It saps our faith in the future, and sucks every last moment of fun out of the present.

1. In public, deal with your crying child
If you choose the 'cry it out' method, you are made of stronger stuff than me, that's for sure. Please, though, do it at home. Do not walk away from your crying child at the supermarket, in the park, at a theme park. Why? Because me and my autistic child are somewhere around you, and we have spent two years building to the point where we can be here. It has taken a lot of time/therapy/reparation/courage/learning from us, and one hysterical child is enough to send us backwards. Not only is an uncontrollable crying child going to end our visit today, it's likely to stop us from being able to come back here for a long time.

I get that you need to handle your child's behaviour too. I totally understand that kids are challenging and you are trying to make the right choice to end the unpleasant behaviour. But if you can, put the needs (even the needs you may not anticipate) of those around you ahead of your own frustration. Find a spot away from the crowd to talk to your child, handle it at home, talk to a behaviourist... it sucks, but it will not only help you and your child, it will protect your fellow park goers/shoppers/fun seekers.

2. If you have a dog, train it.
Superman had cryptonite. Many, many autistic people are debilitated by barking dogs. Some with just dogs in general. For us, it's the noise - surprise! Barking dogs annoy most people. Barking dogs turn my child catatonic - frozen to the spot, crying, hands over the ears, likely to run in the opposite direction even if that opposite direction involves four lanes of speeding traffic.

It is not OK to let your dog bark uncontrollably. It is not good for your dog, and it's not good for those with the misfortune to be near your dog. Train your dog, socialise your dog, initiate strategies to keep your dog amused and engaged when you are out, block your fence so they don't bark at every single person who has the audacity to walk past your house. It is possible. There are trainers that can help. It could make the difference between alive and not, for a person on the spectrum.

3. Cough quietly if you can.
Winter is approaching here in Sydney, and with it comes the inevitable coughs and sneezes. It's totally understandable, people need to cough and sneeze when they have a cold. Sometimes, people need to cough and sneeze when they don't have a cold.

Now, we can do something about avoiding the babies and the dogs, to an extent. We have become masters of holding in/masking/re-directing our own respiratory expressions, without blowing out our eardrums. We cannot avoid the sudden cough or sneeze from someone else. If you are someone else, is there any chance you could reduce the volume of your coughing? In the spirit of reducing the spread of germs, if nothing else. Cough into a handkerchief. Sneeze into a tissue. Use your sleeve. Use your breath control... keep it to yourself. It's a natural biological reaction, I get it. But it doesn't need to break the sound barrier.

As I write this, I know it sounds whiny. It is whiny. But it's our life. It's the one thing that's hard.

Billy's repeating is handleable. His need to charge about and crash into things for some part of the day is fine. The flapping and the occasional toe walking, no problem. We are developing some great strategies to help him learn easily, we're working on the gut issues with some heartening early success, we're building a bank of great friends and social strategies.

As a parent, though, it is not even remotely pleasant seeing your child shocked into tears multiple times a day by stuff he can't either control or anticipate. It makes it even harder when you realise that those things can be controlled, to a degree, at the source.

Now that Billy's able to reflect and talk about his interactions, it's hard to not speak out with him. He says hearing a dog bark is like being hit in the side of the head. He says the worst part about kids crying is that they might never stop. He says coughing hurts his ears like when you fall over and cut your knee.

I'm thinking, it wouldn't be OK to deliberately hit him in the head or push him over, so it shouldn't be too hard to try and control the volume of the sounds he hears.

I understand this because I am his mother, and I know I can't expect the whole world to 'get it'.

And even if you don't get it, feel free to give me the chocolates anyway. I'll share them, I promise.

Tuesday, May 10, 2011

Poo, my old friend...

I'm going to ramble a bit (really? me?) but I want to start by saying this post should provide some hope for the parents of picky eating ASD kids... maybe picky eating any-type-of-kids.

A week ago, we went to see a paediatric gastroenterologist.

For those of you who have, until now, avoided my wailings about Billy's bowels, here's a brief recap. 

Billy was born with no sucking reflex at all. He was fed using a supply line for the first few days of his life, and by the time we left hospital, he had a rudimentary suck. He was never hungry in the morning, but was ravenous when night fell. He made an odd noise occasionally, when you held him, as a baby. It was like a popping sound coming from the space between his lungs and his stomach.

Since he was 12 months or so, Billy has had all kinds of bowel trouble. The Poo Doctor has taught me not to use the word 'constipation' (wise move, it's a yucky word anyway). Suffice to say, Billy has often cried, often gone many days between poos, often done poos that would make a sailor blush. 

His diet was limited to a few items (chicken nuggets, diced carrots, rockmelon, croissants, bacon, bananas, fries/chips). He drank a minimum of two litres of water every day, often double that amount. We had supplemented his diet with vitamins, bowel health formulas, probitics, fish oil, calcium, magnesium and zinc.

He has never had diarrhoea. He didn't vomit as a baby - ever. He would spontaneously vomit (always after drinking milk) from about 18 months. These events were very hard to anticipate, and were never related to an ongoing illness. He also had three different breaths - poo breath, fermented breath and an inoffensive 'normal' breath (very occasionally).

Amazingly, with all this going on... he was a genial, generally calm, sweet natured fella.

It took his first trip to the dentist earlier this year (yeah, yeah... he should have gone before... autism, blah, blah... you know the song I'm singing) to realise he had reflux. She saw acid wear on his teeth, and so, we could convince the paed to refer us to the Poo Doctor.

I did say this would be a short re-cap. I apologise for the essay. My previous post (the Hopeful Parents one) will fill in the details of the appointment with Dr Poo. He has a name, and he deserves promotion, but it takes almost a year to get an appointment and he's in Sydney (and I realise that many of you aren't) so I like to call him Dr Poo. Because I can.

So, fast forward to a week after the appointment, and a week after the drugs started and here's the interesting thing.

Billy is eating many, many new foods.

Why? Buggered if I know. 

Maybe his gut is healing. Maybe he's not so uncomfortable. Maybe tiny pixies have invaded his brain and made vegetables look like chocolates. 

I will say this. Dr Poo is one of those doctors who speaks to kids, not at them, and not just to their parents. After a lot of talking to me and observing Billy playing (yep, doing what kids do), there was a respectfully poky examination and then a long serious chat with Billy. He told him (with pictures) how he needed to eat more fruit and vegetables, how he needed to change his toilet habits (very specific changes - sitting down to wee and poo, heels flat on a step or the floor, going at predetermined times no matter what the result) and how for a while he needed to take some medicine.

Billy took it all very seriously, and he's not a boy with a strong grasp on focus, unless it's on YouTube.

He is doing all the things the doctor told him to, and that includes adding insane amounts of new foods to his diet. In a week, we've added raw carrots, raw snow peas, raw beans, broccoli, radishes, cooked corn, cooked green beans, cooked peas, pears/apples/strawberries (chopped or pureed), nuts, mandarins, oranges and kiwi. He's also swallowing medicine with no protest. OK, little protest.

I'll take it. It's expensive, but I'll take it.

We're deeper in poo hell than ever before, thanks to the drugs. But we're hopeful we're on our way to poo purgatory. We've got six weeks to watch and work for change. Six weeks of watching very carefully, because Billy's on some serious laxatives... 

We're dreaming of getting close to the poo version of bright lights and singing ladies... but for now, we're potentially surrounded by pixies who can make vegies into chocolates, so we can't complain.

Friday, May 6, 2011

Over at Hopeful Parents...

There are lots of amazing people, lots of amazing stories and...

This week's musings about poo and doctors.

Click here to join the dots.

Wednesday, May 4, 2011

We're baaaaaaaack....

After a couple of cocky years of avoiding too much therapy and big title doctors appointments, I'm baaaaack. I'm sitting in the waiting rooms, making polite conversation with receptionists and nursing that omnipresent gnawing doubt that I'm missing something vital.


On the Autism World rollercoaster, I'm back strapped into my seat wondering when something's going to hit me from left field and suck my breath away. Hoping that it'll be something super cool, thinking it's likely to be poo.

It's slightly different these days, though, because Billy's tough enough to be in the appointments by himself (a situation I am not completely reconciled with). He's in with his diagnosing psych today, reacquainting, in preparation for a WISC next week. I can hear him through the walls, hooting and laughing and being more than a little bit charmingly bossy. I'm buoyed by his confidence, and scared by the chance he might poo his pants without realising and prematurely end the session.

It's an odd game, this Mummy of the SN child caper. Sometimes I'm busting with pride, amazed at what we've achieved and sad to leave. Other days, I feel like hiding. I want to take off my 'Yes, my kid is bung' t-shirt and go and get drunk.

Yesterday, it was the Gastroenterologist at the Children's Hospital. I quite like the hospital appointments because I can lurk in the grey area between autism world and medically diverse world. It somehow feels more legit to be queuing for blood tests and ticking boxes on pathology requests. The hidden bonus (booby prize) comes when medically diverse world cuts into my autism reality, and we find ourselves in genetic testing for a range of disorders I didn't even know existed until yesterday. More about that in future posts.

Today, the psych and the GP. Next week, aqua-therapy. After that, Outer Space.

OK, I lie. I haven't booked the aqua-therapy yet.

It's a lesson for the soon-to-be parents, really. Keep in the back of your mind that you may find yourself doing stuff you didn't know existed. You may well do playgroups, and Gymbaroo, and Baby Teddy Decorating Classes. You may even retain your PhD worthy brain while you do those things. On the other hand, you might find yourself sifting through rice to find trains, making visual schedules depicting the steps required to do a poo without unduly distressing the visitors or you may spend time perfecting your death stare for unsuspecting non-autism world residents.

You may also waste time riding high on the cocky assurance that you know best for your child and therefore do not need therapy, therapists or their boxes of rice. You may spend time plotting revenge on the doctors who mention the 'a' word and frantically researching cases that refute their theories (just to reinforce your notion that said doctor is a weird tool who must have found his medical qualifications in a cereal box). You may spend your time identifying obscure medical conditions that on a Friday, in spring, when you lean out of your upstairs window look a bit like what your kid might have.

And you may find yourself staring at your sleeping child wondering what they are dreaming about, and who they might become and whether you'll be around to see it. You might smile at the memory of their laughter, cry when you remember their tears, get to curl up next to them and find your own peace in their sweet smelling sleep.

Some days it feels like Poltergeist, and other days it feels like Mary Poppins. Most days it will, no doubt, be your very own Discovery Channel. And we all love those shows about eating deer poop and counting down to air crashes, right?

You'll be fine.