Tuesday, January 31, 2012

If it wasn't happening, I wouldn't believe it...

It has been a cracker of a week.

When I say 'cracker', I do not mean we won the lottery. I mean we may or may not have lost our minds, on all sorts of levels.

If you read this blog a lot (thank you), you will know that since we began mainstream intervention in Billy's chronic GI issues, he has developed new mental health (for want of a better word) manifestations - namely mild anxiety and very mild OCD. There was also the matter of copious quantities of bile vomit, but that had more of an effect on my mental health (his physical health took a mighty hit too).

In previous years, while Billy was always a reticent (sensory defensive) child, I would not have described him as an anxious child. He stood out from many of his ASD peers in the sense that he seriously couldn't care if you came along and put a gigantic dinosaur in the middle of a carefully created Thomas the Tank Engine scenario and made it dance the macarena. He would simply roll his eyes and remove said dinosaur. He did not need things to be 'just so'. Ever.

Over the last eight months or so, this has changed.

We have seen a gradual increase in anxiety. We've seen more and more questions of the 'is this banana good?' or 'did you wash your hands?' (quite confronting for his grandmother, as she emerged from the toilet at Christmas time). It's been an ongoing worry for us (and clearly for Billy, maybe also for his grandmother). We mentioned it to his GI doctor (rolling eyes, not possible, he is autistic after all) and we mentioned it to his GP (a slightly kinder and less obvious eye rolling style reaction).

This gave us two impressions - 1. we should worry less, and 2. we should stop thinking doctors actually give much of a crap, and start telling cab drivers about Billy's health instead.

So, fast forward from Grandma's Confronting Christmas to last week.

Billy had some blood tests to do. He has had close to a bazillion-gazillion blood tests in his lifetime (if my meticulous filing system serves me correctly). Just before the end of last year, (among increasing questions about toileting habits and general anxiety) he refused, point blank to have any more. We convinced him he had to complete these tests last week, and so he did. It was not easy. It took a few staff, and a millisecond's worth of restraint, but he did it.

He was relieved. ('I'm alive!' he pronounced at the end). We were relieved. He thanked the nurses profusely. They hugged him, and gave him two teddy bears as compensation. All good.

We headed to the movies, to catch up with friends, but we made it to the car park of the movie theatre when Billy started wretching. We apologised to our friends and went home (still haven't seen Happy Feet 2, must see if we still can...) and Billy took to our bed. The next 24 hours were seriously some of the scariest hours we have ever had.

In waves, Billy was consumed by OCD and tics. He would not leave the bed, he wanted all the computers in the house turned off. He moved constantly. His body was wracked by tics, flicking, jumping, shifting. His face was taken over by tics occasionally as well. While he was twitching, he was somewhere else, not with us.

It got so scary we started videoing him, wondering where the hell this was heading. He was consumed by anxiety, endlessly repeating phrases in a cruel parody of his usual echoalia, often in whispers. He was jutting out his jaw, and swallowing compulsively with a far away look in his eyes. He did not eat for most of this time, but he drank litres of water. He complained of reflux pain, but refused to consider any medication. His legs hurt a lot.

Of course, this happened on a public holiday, so our choices for medical advice were an open-all-hours GP clinic where no-one knew him, or the ER. We considered the ER, but knew turning up with our autistic child and saying, 'Um... he is acting weird...' was not going to get us too far (or perhaps it would send us too far...) Who knows?

So we rode it out until the next day. We saw his usual GP, who proclaimed it a 'mental breakdown' and suggested we see his diagnosing psychologist for recommendations to manage anxiety. She also gave is a referral to a neurologist, but she had to be convinced.

Right. That's it then? A 'mental breakdown' at 8. Wow.

We took Billy home (almost back to normal) and sat down to regroup. It was then that we noticed the neighbour's yard.

You may remember the stories of the McMansion construction next door. It's almost complete, thankfully, only the odd dude turns up to rev his truck in the pre-dawn hours these days. In fact, they have begun landscaping. They started this process by killing everything green in the whole backyard with Roundup (glyophosate) two days before Billy went for his blood tests. We found out the details when I was busted taking photographs over the fence, and the neighbours wondered why.

Like autism, pesticides are interesting to search on the internet - lots of conflicting 'evidence'. One site says you could sprinkle this stuff on your cereal, the next says don't even look at a bottle of it unless you are prepared for a mutant spleen to grow out of your forearm.

Billy doesn't have a good history with chemicals. Adverse vaccine reactions, reactions to homeopathics, crazy drug reactions... so maybe, he has reacted to Roundup in the air. Maybe. Who knows.

What we do know, is that the tics, the OCD, the extreme anxiety... are all gone. They left, like they came - gradually over 12 hours or so.

When we go back to the GP for other things, I will mention The Roundup to her. I am expecting more eye rolling. We will watch Billy incredibly carefully for a re-emergence of any of the extremes we saw in those scary couple of days. We will see the psych and talk about anxiety, and we will go to the neurologist and do a full check.

Part of me thinks we should push him into something stressful just to see if he really is living on the edge of a 'mental breakdown'. But while we are in this perverse (and totally not going to happen) part of the universe... can I say, 'Really?' again. Seriously? A blood test pushes him over the edge?

The child who is driven to tears daily by the sound of dogs barking. The child who cannot learn in a  school because the sound of other kids sends him into a zen-like free fall. The child who has been admitted to hospital more times in his 8 years than me and my six siblings combined in our lives. He is the one who has a breakdown over a blood test. Really?

He lives with a level of stress that could strike down a racehorse. He is a regular rider on the autism roller coaster. But a very short struggle, followed by immediate acceptance that he was just fine, pushes him into a 'mental breakdown'...? And the same 'mental breakdown' disappeared as quick as it came...?

Really? I know that the three events (Roundup fest - blood test - 'mental breakdown') are linked. I do not know how.

I know I have to accept that perhaps my 8 year old had a mental breakdown, but I know I'm not thinking of marinating tonight's dinner in glyophosate either.

Monday, January 23, 2012

I think I'm missing something...

Soon, we head to a new gastroenterologist with Billy.

I will call him Dr Poo 2.

I'm trying to get my digestive ducks in a row, as we prepare for a new man in our lives, because I am aware there's a limited supply. I can't keep going to new doctors and going, 'The other guys are tools, I'm hoping you aren't.' I guess I can't also keep asking for information that might be impossible to find. I just need these guys to be honest with me.

Quick poo recap.

Billy is 8. I do not recall being alarmed by anything poo wise until just before he was diagnosed with Transverse Myelitis when he was almost 4. Over a week or so, he had episodes of crying out in pain. We assumed the pain was tummy pain. It may or may not have been given the expected antecedents to TM. He was regular, in a poo sense. Then he started vomiting, and a week or so later, he was having steroid infusions. He recovered, which is supremely awesome, but from that moment, we have been residents in poo hell.

Billy has only very rarely missed a day of pooping, but it has never been easy. It has only rarely been hard (in the not soft sense) but it has been deeply challenging (in the will this ever be something we do not have to think about sense).

We did not know, until we went to the dentist, but Billy has been refluxing chronically for a very long time. After a period of cyclic vomiting attacks in response to PPIs, an endoscopy apparently proved the reflux was cured. We stopped the PPIs and the reflux returned with a vengeance (but thankfully, the cyclic vomiting stopped... that's kind of a win, right?)

And that's where my understanding ends.

There are diet interactions, for sure (dairy is like intestinal cement for Billy), but no diagnosed intolerances. We have an extended family of coeliacs (on my side), but the doctors consistently tell us Billy does not have coeliac disease, or a notable reaction to gluten. We go on and off various diets, we try a variety of supplements, we are currently reliant on osmotic laxatives. There are causation theories voiced (connective tissue disorders, genetic disorders, immune disorders) but they are not investigated.

Some things help, some do not. But I am a kids' tv writer, not a pharmacist/dietician/doctor, and am just a little concerned that my patchwork ideas on GI treatment plans may fall wide of the therapeutically sound mark. Call me crazy, but my comfort zone is closer to poo jokes than poo treatment.

I am no clearer on why this is all happening (and therefore what are our best choice options), than I was when we entered the gates of poo hell, four underpants-abundant years ago.

I may be in complete denial about what medical science is capable of. My logic is this.

If we can grow an ear on the back of a rat, we can surely come up with a valid theory about why Billy can't poop without drugs, and has breath that could knock Superman over (you know the Spongebob episode... that's Billy some days, and his teeth are fine).

I want a bit of 'why'. I want a bit of 'how'. I want a framework, with key words I can safely google (without vomiting in my mouth with fear, as I do).

  • Am I wrong in thinking it is not OK for a child to be reliant on laxatives?
  • Is it odd to be concerned that the reflux drugs caused a violent reaction that the original Dr Poo insists could never have happened? (in the end, we brought video, dated and cross referenced to dosage times, but he was still dubious)
  • Is it out of the realms of normality that we would like some guidance on what's going on, why it's happening and how to decrease the likelihood of it happening forever?

Since Dr Poo 1 and I last avoided eye contact with each other, Billy and I have been through genetics screening and allergy testing. Well, actually we have seen the doctors and done the semi-invasive testing. There's a semi-trailer load of DVDs waiting for Billy tomorrow, if he relents and does the blood tests both doctors have ordered.

We will take those results to Dr Poo 2, among with the charming pictures of Billy's hernia and oesophageal blistering, and see how we go.

In case it's me that's stalling this process, I am considering inventing a new persona - bit of non-toxic hair dye (a whole other story for another day), maybe a hat, a fake accent. Maybe if I approach this doctor relationship as a kind of a improvisational script writing process, I might be able to understand what the hell is going on.

If it's impossible to tell why Billy's gut is a mess, just say that.
If we should totally revise his diet, tell us what to do.
If there's a possibility of an overarching condition (not autism) causing this, investigate it.
If you think I am a crazy woman, join the queue, build a bridge, and get over it.

It is not OK to me, to accept non-specific ill health, under the umbrella of autism.

He is autistic, yes. And many autistic people have gut problems, for sure. But does autism cause gut problems? Who knows? Surely we have to understand what causes autism, or even what autism is (let's start at NOT a collection of behaviours, but a set of medical conditions) before we just drug these kids (adverse reactions, be damned) and send them home.

My aim is for my child to be happy, healthy and free of the possibility that he might crap himself in public. I would like to achieve this without a lifetime of financial contributions to Norgine or any other drug company. I can't help thinking that a life on prescribed laxatives, starting at 7 years old, probably morphs into an future filled with adult nappies, heavy duty deodorising products and very few friends. I'm not willing to accept that yet.

In all seriousness, I feel like we autism families are paying the price for the battle that dare not speak its name. While large pharmaceutical companies and forward thinking doctors fight each other for the medical high ground, we are left sitting in examination rooms apologising for the fact that our kids are sick.

For what its worth, I stand behind Wakefield and his colleagues. I stand behind Dr Bock, and Dr Kartzinel and Dr Jepson and all the doctors who care about asking why. I don't care if they are not 100% right all the time, or if they change their minds, or that the conservative media manages to portray them as dodgy criminals.

I care about one thing - the fact that they are trying to understand why so many autistic kids are so very sick. I care that they are trying to understand why there are so many more autistic kids than there were ten, five, hell, two years ago. I care that they are trying to understand.

Cos, I'd quite like to understand too.

So Dr Poo 2, please don't just go ahead and treat my kid, help me understand why this is happening. Do not brush off my concerns, explain how I can minimise them. Do not, ever ever ever, call me 'Mum'. Unless you are Billy, and it's 2030 and you are now my doctor.

For now, I'm off to stockpile DVDs for tomorrow's blood-letting adventure, and to peruse the image altering hats at my local shops. You may or may not recognise me, next time you see me.

Friday, January 13, 2012

Catching flies...

The other day, we went to a theme park. It was of those loud, rollercoaster-y, crowded corners of hell that most adults avoid like the plague, and most autistic folk abhor. And yet, we went there.

We went because in the centre of the theme park, there is (inexplicably, really) a pack (a pride? a clutch?) of tigers, and Billy, being Billy, was very keen to see them. Two hundred and ten dollars, a few unremarkable tourist-appeasing marsupials and a couple of dopey big cats later, we were done and we made our way onwards to Nana's house.

The point of today's reflections, though, happened alongside us.

For the first time in Billy's life, I was aware of people gawking at him. No matter the age of the gawker, the look was the same... A slack-jawed, smirky, fly-catching gape.

Billy was wearing ear protection. He was jerking his arms and torso, as he does when presented with overwhelming sensory stimulus. He was grimacing occasionally, and quietly scripting to himself. Really, though, it shouldn't have mattered what he was doing. He was being himself, not disturbing anyone. Actually, compared to some of the choice people gathered around the base of the rolercoasters, Billy's behaviour was actually fairly moderate.

A day or so later, we were at another zoo. It was a zoo staffed by a large number of local volunteers who were visible and vocal and proud of their establishment. Seemed like a great idea, until one of them commented on us calling out to ear protection-wearing Billy. She laughed openly and said, 'can he actually hear anything wearing those?' I started to explain how the ear protection cut the top end of offensive sound out for Billy, when the woman interrupted me saying,'That's hilarious!' I stopped in front of her, smiled broadly and said, 'He has a disability. It's not meant to be funny, but hey, if you find it amusing, good luck to you...'

I was briefly angry. Actually, flames may have curled out of my nostrils. And then it got me thinking about what's going on with us right now.

We are walking through a developmental doorway with Billy. He has developed enough language and understanding to begin to have a handle on what autism means to him. He is building a kind of meta-awareness of the effect autism has on his body and mind. He is starting to compare himself to others, and his behaviour to the things he sees other people do.

It's a condensed version of the rollercoaster every day.

We have been talking a lot about the body jerks and grimaces over the last few days. Apart from the theme park/animal adventures, our hotel is by the ocean (sun, crashing waves, screaming kids) and has an old fashioned holiday fun fair parked out the front of it (more screaming kids, gigantic inflatable fun, blinking lights and popping balloons galore).

Suffice to say, there has been a lot of jerking and grimacing.

We have been talking with Billy about whether he can control any of these movements. We have been trying to talk about about how other people view those body movements, and whether or not it is a good idea to suppress them at any time. For what it is worth, the jury is out, conclusion-wise. He does not fully understand the conversation.

But, these are not conversations one wants to be having with one's child, at any time.

'So, sweetie... Do you know how odd you look?', and 'My lovely boy, see those looks on those people's faces? They are looking like that because you look different to other people. Understand?' or even 'Do you think it's important to be the same as everyone around you, my love?'

Like any parent, I am proud of every single thing about my child. I think he is wonderful, and beautiful and inspiring. More than that, I am unashamedly on his team, no matter what. I want to be, and I have to be, no matter how odd he might look.

This isn't just about accepting Billy, it's about accepting autism. It is about understanding that a disorder like autism comes with added extras, that make our beautiful boy a potential object of derision, amusement or judgement. It's about accepting that while some challenges may be overcome, some will be around for life and all are as natural to him as his hair colour and preference for tan coloured foods.

As tempting as it is some days, I cannot spend my time wishing for him to blend in. I don't want him to live in a world where that's an aim. While I am one who would happily hand over my kidneys if it meant the challenges of autism could be taken away from Billy, I should probably preparing some other vital organ as an exchange for the promise of a world free of ugly, ignorant stares.

For us, so far, despite a lot of therapy and research and a lot of attention to health, autism isn't disappearing. It is morphing. We are very lucky that Billy has developed a lot of useful skills, and that he is a little boy with a calm temperament and a lot of love in his heart.

This holiday, as lovely as it is, is also a reminder that not everyone shares Billy's positives. We need to play to his strengths and help him develop skills to help him navigate through a world that needs to judge or laugh at people they don't understand. We must not give him the idea that he should hide, and yet we must try to give him strategies to understand (accommodate/avoid) the pitfalls of being different.

A couple of years ago, I thought this game was all about getting him 'school-ready'. I thought if we could crack that old chestnut, we were somehow home free. If I could turn back time, I would go back and slap myself a little.

After the slapping, I would remind myself that I've never been fond of jumping through hoops. I would gently remove the hoops that the parenting books and classes placed in my hands, and burn them along with the triangle pillows and the ugly floral smocks.

I would tell myself there is no blueprint. There is no roadmap. There is, maybe, a messy looking brainstorm... A doodle that looks like it was done during an inconsequential phone call many years ago. Among the crude flowers, houses drawn without lifting the pen off the page and mustaches drawn on celebrities, there are some useful keywords...

I would point out the words - love, acceptance and courage. And maybe wine or chocolate. Also some semi-harmless weapon for the idiots who laugh and stare.

Friday, January 6, 2012