Tuesday, November 29, 2011

Is it all real...?

We're back on Terra Australis, finally back in ship shape (jet lag is pretty impressive stuff, we have discovered), and I'm still dipping back into memories of our adventure wondering what was real and what was not.

It's bleeding over into all aspects of our lives.

On a completely fatuous level, I am constantly checking that our excellent, stylish and cheap-as-chips fashion purchases are still in the wardrobe. I'm afraid, having got them so cheaply and from such fabulous places, they will spontaneously combust leaving a pile of cool looking ashes. So far, thankfully, no such carbon has appeared.

On another, more complex, level... over the last week or so, there been a whole new curve to our fairytale ball.

It's a wily beast - the autism spectrum. It's a collective, interpretive diagnosis. To be diagnosed officially, one needs a bunch of folk to observe/document/agree/sign off. It's not an easy process for anyone. Given we are in an unprecedented era of diagnosis (a recent report stated a child is diagnosed with autism in Australia every 7 hours, though this is seen to be a gross underestimate by many locals), it's not just the diagnostic process that's a challenge.

A label of autism is hardly a golden ticket. It is, however, a public acknowledgement that the challenges present at diagnosis are unlikely to disappear completely (despite the carrot of EI funding that evaporates at age 7 in Australia). It's a statement to society at large, that this person will require support throughout their life. Some may need a little, some may need a lot. Some may need money, some may need logistics, some may need services, most will need a bit of everything.

Though there are occasional rumblings of diagnoses being 'handed out' to kids who do not 'have' autism, and allegations that autism is used as a catch all diagnosis for kids who have less specific conditions and yet require support in the education system, I have never seriously (ever) thought that people would genuinely, appropriate autism for their own nefarious ends.

Yet, for want of appropriate services, or want of attention, or want of a community (who knows) it seems like people will. One one level, good luck. It's in the news. It's an emergent field. There are a lot of support systems in place for autistic people and their families. If people truly cannot find their spot, or truly need interaction with therapeutic and social services, then... I guess... do what you have to do.

Here's the challenge, though.

The autism community is held together with chewing gum, string and trust. We look to each other for honesty, for guidance and for the odd drop of alcohol. We do not necessarily have a gigantic pool of reliable evidence and consistent professionals behind us. As much as we'd like to be able to look over our shoulder and find a musty library full of validated, repeatable research to back up our instincts and experience, it's not there (yet). What we have is each other - similar people on a similar journey with their hearts similarly open to the needs of our fellow travellers.

Maybe from the outside, this stuff looks attractive. There are a lot of smily faces, and LOLs and exclamations of preciousness in our kids. There are a lot of virtual places to be heard. There are a lots of cups of tea.

It is the secret bonus of living a life with autism - the generally stellar standard of the folk who share that life with you and your family. It's the wind beneath our wings, the carbs in our lunchbox, the air in our balloons.

Until, it proves to be stale, empty or smelling like poo.

It doesn't happen often, but when a toxic dust storm blows through a bonded group of folks in shared need, it leaves a nasty taste and a bunch of rattled personalities in its wake.

Sometimes it's a new parent in denial, lashing out at the possible identification of their child as actually autistic (insulting long diagnosed families with the revulsion in their voices). Other times it's an inflated ego, taking the 'moment' a little too seriously. Occasionally, it's a line of some kind that just shouldn't have been crossed. No matter what, it stinks.

I had forgotten how vulnerable we can be. I am rarely focussed on the challenges of the parents (we signed up when we threw out the birth control, in my mind, what you get is what you get). This week I realised that the grown ups in this game are betting on a house of cards we have built together. When the occasional dangerous wild card is revealed, it destabilises the whole structure - and we have to build it again.

We can, and we will, because we must. It is not possible to walk this path without compadres. Well, maybe it's possible, but not advisable. As I learned in Yosemite National Park AKA Heaven on Earth, if your friend knows the size and sole pattern of your shoes, someone can find you if you get lost.

OK, that's only vaguely relevant, but along with the video of the bear peeling car doors open, it was my favourite bit of Yosemite info.

Really, what I want to say is... the future will be full of genuinely autistic folk (more than now), and we are not really doing a bang-up job of caring for them in the present. Please don't randomly bugger it up now. It's already like catching falling jelly shots. It doesn't need to be any messier.

Monday, November 21, 2011

It's never over, even when it's over...

It's our last night on the Great Family Adventure, and I'm in utter denial.

It has been so magical, I don't want it to end. We have travelled around for three weeks, covered over 3000 kilometres and heard Moves Like Jagger at least 1500 times.

OK, I'm over restaurant eating and room service (even though we have all discovered some wonderful food while we've been here). I'm looking forward to my own bed (though the cleaning pixies who tidy up the room and do funny things with Billy's toys will be sorely missed). I'm very, very keen to see Scruffy again (as I hope he is to see us).

I'm kidding myself though. We have seen the most amazing things, we have met the most amazing people, and we have proven to ourselves that we can achieve things we thought were impossible. The USA has been very kind to us, and we were pushing the friendship. We asked a lot, and America, being America said, 'Sure.'

Can we have a side of bacon? (asked in every restaurant). Sure.
Can you put each food on a separate plate? (also in every restaurant, as a precautionary tactic). Sure.
Can we leave here and come back later? (every zoo/theme park). Sure.
Can you seat us away from the babies? (every where we go). Sure.


We just had to mention the word autism, and people said, 'Sure'.

It's hard to pick a highlight. San Diego Zoo is the pinnacle of all the city zoos we have ever seen (and we have seen quite a few). The haboob that accompanied us on the road to Phoenix was the scariest, most beautiful thing I've ever seen. Disneyland was pure magic, everything it promises and so very much more. They deserve special mention for their autism respect alone, but over and above autism, it was just plain good to us. Yosemite was majestic, calm, stunning, awesomeness. Half Moon Bay was life-changingly gorgeous. San Francisco was achingly cool and welcoming. Los Angeles is so much more excellent and so much less scary than I ever thought it could be.

After so many years of acclimatising to autism, it has been a joy to experience things with Billy - his way. It's been new to all of us, and so we have let him lead. In many ways, we have seen this whole adventure through his wonderful eyes, and it has been wonderful. We have weathered new noise together, we have taken new steps together, we have planned through totally new experiences together... it has truly been a lesson in life.

We are all tired. We are all hoping for a calm trip home. We are all changed.

I can't believe I have met some of the women who have held my virtual hand (hell, they have held my hair back while I have virtually hurled. Repeatedly) through this autism adventure. I can't believe the ease of those meetings, the depth of the connections and the aching sadness I feel returning home knowing I am putting physical distance between us again.

I can't believe we didn't argue/fall apart as a family/go crazy/break down in the desert or a gang neighbourhood/get caught in crossfire/witness a major crime/gain 10 kilograms/see a Kardashian... OK, I am genuinely a little disappointed about the last one. But a minor Real Housewife is a fair substitute, right?

I can't believe we have taken an autistic child on a huge adventure, and apart from a tired attempt at a meltdown at Los Angeles Zoo this morning when the Bat Eared Fox and Echidna refused to make an appearance, he has been astonishingly balanced.

I can't believe I am saying all of this when we still have a 14 hour flight to go.

For now, I will sleep and dream, and taking the advice of Crowded House, I will not dream it's over. I will dream of a second flight with no babies and a slew of new movies.

Thank you, America. For being amenable and positive and accommodating. For pulling out a bunch of smiles when your economy smells like a swamp and you are still leading a massive international conflict. For still having low prices despite my last statement.

I was genuinely scared before we came. Those of you who know me well will know it is not hard to scare me. I can see disaster in a cupcake.

My fears about this country, and Billy and us were unfounded. I will remember this forever and live my life accordingly.

At least I would, if it was over... but too much has happened for this to be an experience that ends. I've still got my virtual hair holders (thank heavens I didn't turn out to be a complete looney tune), I've got around a bazillion photographs and as long as Customs don't raise any eyebrows... I have a secret stash of snack food to smooth the transition to home.

Life is sweet.

Sunday, November 20, 2011

The Choking Man...

A week ago, at a lovely restaurant, in the company of extraordinary women, I witnessed the near death of a man I don't know.

He was eating dinner a couple of tables away, when something got stuck in his throat. For what seemed like an hour, but was closer to a minute, choking man tried to catch a breath, and he couldn't. One of our fellow diners gave him the Heimlich Manoeuvre, to no avail. The sound of someone trying to breathe, and being unable to, is seriously something I never want to hear again. A good 50 people sat frozen in time, watching, hoping, not sure what to do, wondering whether we should stare or move away.

Thankfully, at the peak of his struggle, a second diner took over the manoeuvre and the choking man was saved.

Just like that, crisis over. The choking man thanked the Heimlich men and they all went home.

We tried to resume conversation where it had stopped, matrix-fashion, a minute/hour ago. We tried but we couldn't. Two of our number were crying and the rest of us were a little discombobulated. It's not surprising, in many ways. Choking is scary. Almost dying is scary. The way a potential choking incident resolves itself instantly is just plain surreal.

We talked about the fact that choking hits close to home - low tone kids, oral motor weaknesses, accidents involving other kids... it was hard to watch, hard to experience, hard to reconcile.

For me, I have to say, the thing that hit me the most was that it was over.

I was relieved the man was still alive. I was absolutely delighted the men who intervened had been successful. I was glad the crisis had passed, and everyone could go home in one piece.

But if I'm really honest, and I try to be, I was a bit jealous. Because it was over for them.

I'm not proud of having these feelings. I'm not proud of appropriating someone else's crisis for my own emotional wallowing. But it stinks some days that our crisis isn't over. It's not always a crisis. Not every day. But it's always lurking. It's hanging around, waiting for its moment.

Some days, I want someone to appear from the shadows, give me a good sharp squish in the solar plexus and make the whole damn thing go away.

I don't want Billy to go away, not for a second. It's not really even about autism going away, although I'm not going to lie, I don't love every aspect of autism every day. It's about the underlying possibility of crisis.

Choking man reminded me that crisis is possible for everyone, for sure. It's awful to watch, and obviously, it's awful to experience. It's life. I get it.

But he also made me realise that my challenge as Billy's mother is to make sure he lives his life without the sense of lurking doom that I often have. We've spent too much time in hospital already, we have too many medications and doctors in our lives already, we see the smoky threads of future issues. We need to find a line between informing him of the risks he faces (maybe we should start with properly identifying as many as we can) and letting him live a life full of possibility.

We've been travelling for three weeks, and he has handled himself like a champion. He has been brave and accommodating and engaged. He has learned to regulate himself to the point where he can ask for (OK, demand) his own time (thank you, YouTube). He is clearly challenged, no doubt about it, but he manages his challenges (and is permitted to manage his challenges) in a way that has made this whole adventure possible.

The fact that things might happen, the fact that things will happen... just is. The things might be great or the things might be challenging, but we have to be open to... things. We have to welcome... things. Without a sense of dread.

This is probably a good mindset to be in as we prepare to get back on a plane for 14 hours.

Without knowing anything about choking man at all, I really hope he's OK. I hope the men who intervened and saved his life are OK. I hope everyone in the restaurant is OK.

At the end of the day, I want my kid to be OK.

Nothing to see here.

Thursday, November 17, 2011

Banana slugs drink water...

Last weekend, as a part of the fun, we took the kids on a hike through one of the most painfully beautiful woods I have ever seen.

To give context to my woods-niavity, most of the bushwalking near where I live is kinda crunchy and eucalyptusy. Not that there's anything wrong with that. You can travel to far, milder corners and find less natural crunch, but for the most part, it's fairly bright open country. Beautiful in its own right, but not like Northern California.

Billy needed a bit of quiet time (read: time away from people) so he stayed back and I got a chance to hike alone, and see both the countryside and the company I was keeping in a relatively relaxed state.

Relaxed, that is, until the discovery of the banana slug.

On the rich smelling, dark ground, many feet below the tops of the giant redwoods lay banana slugs. They were bright yellow, they were huge (think, small banana) and they were slimy to the max. All of which made them irresistible to the kids.

As a homeschooler, I can confidently say you could base an entire integrated curriculum on these guys.

Mathematics: count the banana slugs, compare length, girth, weight.
Literacy: ode to the banana slug, invent banana slug language, a banana slug is slimy: discuss
History: where was this banana slug born? What did this forest look like before the banana slugs?
Geography: plot the banana slugs on this map
PE: can you move like a banana slug?
Drama: can you think like a banana slug?
Religion: what does a banana slug believe? where do banana slugs come from?
Writing: why does your handwriting look like a banana slug did it?

See... it goes on forever.

Banana slugs became the glue that kept the kids together. Eeew. That reads much more literally than I meant it to. But they did unify a group of kids of all neurological persuasions. The kids spotted them, stared at them, watched them intently, protected them, and identified with them. It was quite a joy to behold.

The best part was when a banana slug, previously thought to be an orifice free (if that is possible) organism, turned its head (or perhaps its other end) and slurped up some water off a leaf. You would have thought someone had turned on a DS. All the kids were gathered around the poor thirsty banana slug, willing it to drink (or moisten its nether regions) again. They talked, they theorised, they argued, they wished... and in that moment, it was genuinely hard to tell which children had autism and which ones didn't.

Thank you banana slug. Glad to meet you. Don't want to eat you. You helped us all have a hike in the woods without worrying about all that other crap I talk about all the time.

You may have another drink (or bidet) now.

Tuesday, November 15, 2011

For the love of pixar...

This morning we are curled up in San Francisco, recovering from our wondrous weekend.

As we are within driving distance of Pixar headquarters, I thought it was time to explore part two of the lessons learned from our adventure on the american autism island.

Before I talk about the magical powers of Lightening McQueen, I just want to quickly talk about the isolation part of autism parenting, and why we really don't need to feel isolated at all.

Almost a year ago (I should find the post and link to it, but I am in holiday mode and can smell bacon cooking somewhere), we had a get together of a bunch of the Australian families involved in a local autism board. We all 'knew' each other, online, and had done for anything up to four years. But only a couple of us had actually met in person. To be honest, we were nervous. We were wondering how the adults would get on, we were worried how the kids would get on (or cope), we were worried it would wreck the tentative balance of the board...

Thankfully, nothing bad happened. In fact, spookily, nothing bad happened. No disagreements, no meltdowns, no tears. Not even from the kids.

In case that was a freaky case of all of us breathing calm gas, or something... I came to America, to meet some of the parents from the first autism board I ever joined. And this weekend proved that a relationship formed on the internet, can indeed translate into real life.

I'm not advocating purchasing a spouse online, though if that's what you want to do, who am I to stop you? But I am trying to point out that the support you can get online (stress that 'can' a few times because we all know the pitfalls of crazy online boards) can seriously save your life.

One of the original members of our board, opened her house to us last Friday night, sharing her beautiful family (and their various toys). There were five boys (three spectrumites, two NT sibs), three grown up men (sharing BBQs and comparing beer and sports results) and three women who could barely take their eyes off each other.

Even though there was nowhere near enough time to download all our stories, and thank each other enough... we learned some amazing things about the power of the internet-born support relationship.

What has grown (for us), sustained by boards and Facebook, is a kind of acceptance that maybe we haven't defined before. It knows your backstory, it knows your child's quirks already, it needs no contextualising. Plus it sees the humour in ending a meal with syringes full of supplements and meds. It doesn't question, it doesn't judge, and it knows when to put Pixar on the TV.

Seriously, on Friday night, the boys were all over the shop, having played, eaten, played, cuddled the dog, played, hidden in corners, played, jumped on a crash mat (I want one of those so badly), and played some more. Then the great god Pixar appeared, and five boys and one dog instantly curled up on the couch. The three ASDians clutched their electronics (2 iPads and a DS) and the two stunning sibs hovered, gadget free, around the screen. It was magical. Like a movie. Maybe even a Pixar movie.

There's always a way to calm kids. No matter what their needs. It may not be what your mother did. It may not be what your friends do. But there is always a way.

And while kids are calm, parents can truly connect. And relax. And laugh, and laugh, and laugh.

That, in a sentence (and a couple of fractured phrases) is the biggest gift last weekend brought.

Who needs Santa, when you have Pixar and the internet?

Monday, November 14, 2011

Lessons learned from the island...

This has been an extraordinary weekend.

In a beautiful misty beachside town, just south of San Francisco, I have learned a bunch of stuff about life and autism and life with autism. I'm taking these things away with the intention of using them as life principles, or t-shirt slogans, or both.

I'm going to try and summarise. Apologies if I make no sense. I will try and substitute with jokes. I'll fill in the chapters over the next couple of days, but for now, here's a beginning.

1.  I Do Not Wrestle with People I Have Just Met
Billy met his twin. Actually, he met brothers who are his twin, if you were able to morph them both into one human (which would, just for the record, be an irresponsible misuse of excellentness... but I digress).

They look alike, they walk alike, they think alike, they create alike. They are not the same. They are kindred spirits. So much so, that as we mothers were talking, we would randomly drape a hand on the head of the child we believed to be our own, and have to do a double take to clock that we were patting someone else's child.

Within nano-seconds of meeting, the boys were playing like they'd known each other all their lives, and were completely neuro-typical. OK, so they were pelting each other with Angry Birds and Mario toys and making forts in the hotel beds... but it was energetic reciprocal play. Billy, being Billy was keen to move the play to some good old fashioned World Championship Wrestling. His twins were interested, but some boundaries were required. And these are they.

'I do not wrestle with people I have just met' said Billy's twin. 'I need to get to know you first. Do you play Mario?'

Can you conceive of a better way for children on the spectrum to approach new friendships?

Rule. Qualification. Strategy.

It's so perfect, it's got that iPod kind of feel to it. Be clear, be pleasant, be inclusive. Work within your realm of comfort. Do what you can to connect. Understand your boundaries. Read the room and work from there. Build a bridge, walk tentatively over it.

Needless to say, after a quick but detailed discussion of Mario, African animals and why we can hear a foghorn sound every 10-15 seconds... the boys were wrestling like champions. Then they shared movie projects and flip notes. They remained firm friends for the weekend. They vowed to stay in touch (though in their eight year old cuteness they had actually fallen asleep/stayed asleep and were unable to say goodbye in person).

They haven't questioned each other's differences. They only remember their connections.

I'll get on to the extraordinary mothers and grandmothers, the unspeakably beautiful adventuring, the wine, the police presence in the hay maze... all in the next few posts, whose working titles lurk below.

2. For the Love of Pixar
2. Banana Slugs Drink Water
3. The Choking Man
4. Hold My Jacket So I Can Wrestle
5. It's Never Over, Even When It's Over

But now, I need a quiet moment to dry my tears. I know, just like him, I have the ongoing support of my autism buddies... but saying goodbye to them this weekend has been a little more than my heart wants to take.

This weekend reminded me I am not alone, and yet it also showed me what I am missing by being so far away from these women. It's bittersweet. It's a gift. It's going to make me incredibly grateful for my friends at home, when I get back.

Also, probably a little more annoyingly needy than usual for a while. I apologise in advance, for the fact I may need to wrestle you or throw a couple of Angry Birds at you. I warned you, right?

Sunday, November 6, 2011

Gosh it's been a long time!

But I have an awesome excuse... we are on a brilliant adventure through California (and a bit of Arizona)!

I'm at Hopeful Parents today.

Click through for a taste of the adventure, and a big celebration.

PS. we signed a confidentiality agreement on the Human Rights Commission matter. Suffice to say, the outcome was very much to our satisfaction, and the things that happened to Billy are unlikely to happen again. Phew.