Sunday, September 16, 2012

Why we need to talk...

Billy will be nine in a little over a month. He is a long, tall boy now, though he's still all cheeks, ears and eyes to look at.

He is, now, as he was the moment we realised we'd made him, the most excellent child I could dream of. Of which I could dream (who invented that rule, seriously?)

As each birthday has approached in Billy's life,  I have collected the previous year in artefacts - videos, photos, collections of zoo maps. This year, I'm going to do it here. Now.

It's a little premature, but I'm imagining it is going to open a few cans of worms, for me. I'll need to work on catching and containing my squiggling reflections in the intervening 50 or do days.

This time last year, we were in the final stages of preparation for two gigantic events. Three, if you count Billy's birthday.

The first was a mediation session in the Australian Human Rights Commission, aiming to secure an apology from Billy's school for their unlawful actions towards him and us. The second was our first overseas holiday as a family.

I was 10 kilograms heavier, 10 years older and 10 kinds of crazy.

We secured the apology. We got on the plane, and we started a new countdown.

Consider this the 2012 Jump on the Rollercoaster clip show.

10. Billy takes to international travel like a pro.
With his toy wombat under his arm, and an Apple product tucked dangerously close to every vital organ, he flew - literally and figuratively. No-one was more shocked than me at how well he handled the rigors of long haul flight, long haul driving, changes in food, new friends in every city, new everything every day.

We kept a diary, we bought a lot of maps, we walked a lot. We listened to him and gave him space when he needed it. He listened to us, and felt safe and happy. There was one jet lagged vomit, a teeny tiny San Francisco runny nose and a scary moment at Disneyland at night when he decided Captain Hook was coming for him.

Beyond that, he had the time of his life.

9. Billy does Christmas.
Billy is the youngest grandchild for one grandmother, and the only grandchild for the other. He has a broad variety of excellent stand in grandfathers (step grandfathers, grand uncles, mentor type folk), but a devastating lack of blood-line grandfathers. I am digressing, to divert from the gigantic bandit-like making out that occurs every December in Billy's life. He is treasured, and that results in treasure. Seriously.

Also, being Billy, Christmas (read: peak tourist season in Australia) doesn't divert him from his favourite zoos in the north of the country where the abovementioned grandpersons live. Think over 35 degrees Celcius (north of 100F), grumpy children, bored teenagers, overly enthusiastic parents and... us. It's awesome, in opposite world.

This year, we went to Dreamworld - name unintentionally ironic. We went there because they have tigers and an 'animal park'. I use inverted commas, because many of the actual animals had been replaced by stuffed animals (in cages, I kid you not) and the tigers were asleep which made them invisible behind the wall of bored teenagers, who were also sunburned and queasy from rollercoasters. Dream, it was not, unless it's the kind of dream you have after too much MSG.

Billy loved it, and wants to go back.

8. Billy has a 'mental breakdown'.
One day in January, Billy took to his bed.

There were various precedents (neighbours and local council getting busy with industrial amounts of Roundup, a particularly difficult set of blood tests where I may have had an accidental intimate encounter with a phlebotomist while briefly restraining Billy, a planned trip to the movies - I know it's supposed to be fun, but for us, as for most autism families, it's never the deeply relaxing prospect it should be).

Anyhow, a sweaty and floppy Billy lay in his bed and refused to leave for a couple of days. He repeated a lot (and not in that comforting echolalic way we are used to). He stared a lot, twitched a lot and made some very very unusual repetitive movements with his upper extremities. We took him to the doctor, who viewed video of the repeating, staring, twitching, repetitive moving and pronounced it a... 'mental breakdown' (no, I hadn't heard that phrase used since I saw 'Valley of the Dolls' through a crack in the living room door as a child, either). She suggested a trip to the psychologist (see Billy gets comfortable with things he's already comfortable with) and gave me strange looks as she wrote the referral to a neurologist I demanded from her.

One day later, at 5:45am, Billy had his first generalised seizure.

7. Billy has epilepsy.
It took three EEGs, two neuro appointments, one MRI and a partridge in a pear tree to get this diagnosis. For new players (and we are very very new) can I give you a heads up about looking into the mysteries of heads?

If the word seizure is suggested in relation to your child, you will be offered an EEG. They will first try to sell you on a short EEG. Unless your child has massively apparent seizure activity, or you regularly win lotto, you will not see a seizure on a short EEG. This will mean a line will be drawn under the question of seizures, until your child has another seizure. If you are genuinely concerned about seizures, and not simply looking to draw random lines under health fears, ask if there's any chance of a longer EEG. There may not be, but it's worth a shot.

There's also the questions surrounding the links between autism and epilepsy and seizures and sub clinical discharges and... Actually, I'm going to let you google those yourself if you are keen. You'll probably make more sense of it all than I've managed to so far.

Billy is handling this new addition to his file with style, grace and the odd bit of scary language ('my eyebrows won't stop buzzing' is one of my favourites).
6. Billy gets mega healthy
The seizures gave us a bit of a kick in the pants.

We though we were doing OK, health wise, but really we weren't. Billy was CF but not GF. He was eating a grand total of maybe 10 things. They weren't bad things necessarily (OK, the chicken nuggets weren't made of hemp seed, but they were the only animal protein he would eat) but they weren't great either.

So, we started juicing. We added plant based omega threes (fish oil made Billy leap through the air like a salmon). We added probiotics, then prebiotics, then more and more good clean organic foods as his gut healed. We added a multi-vitamin formulated for kids on the spectrum. Finally, we nixed the gluten.

Each and every step along this path was taken so slowly Billy barely knew it was happening. We took baby steps. Actually we took baby beetle steps. Teeny, tiny steps. We're still walking this way, and will for the rest of his life. The change is miraculous (no drugs in his GI life, really noticable changes cognition wise) and it needed to be because the seizure activity has further complicated Billy's ability to focus.

5. Billy gets comfortable with things he's already comfortable with
OK, that's a little harsh.

Billy did CBT - cognitive behavioural therapy. He did it one to one with a very lovely, positive, clever young psychologist. It taught him what anxiety is, what it feels like and what to do about it. It's useful, it is. On a surface level that may well allow him to distract himself from the possibility of running onto traffic to escape a painful sound. It reminded me that behavioural therapy is not my favourite thing, and that life is really all about managing risk rather than eliminating it.

Billy has a toolkit, and a bunch of new reasons to suspect his beloved dog is actually his enemy.

4. Billy avoids schoolwork.
He is an almost nine year old boy, after all.

Distance Education continues to be his preferred mode of learning, and so it is ours. He needs an adapted program, and he was not receiving that in the 'system'. He is quiet and compliant. He is not a behavioural disruption. He talks. Ergo, he can cope.

But he can't. He doesn't. He doesn't even survive. He is depleted and exhausted and saddened. He is very clear about the stress he felt at school and pre-school. In addition, we now know from our adventures in neurology, that those stresses have a direct impact on his health. So, it's a no brainer.

Billy needs calm and time and space, so that's what he gets.

3. Billy gets an adjusted prognosis.
It's been a year of new thoughts about Billy's future.

Up until the last couple of weeks, we had kind of assumed that Billy would make his way through the education system (in his very own unique way) and probably find a way to study post school (again with modifications). We thought he might live independently (quirkily, but independently) and we thought he would probably hopefully have an independent but quirky relationship... all the stuff that I read was possible for 'high functioning' autistic people. We bought the PR. We invested in the t-shirts.

It's unlikely to pan out like that according to his neurologist.We always had concerns beyond what we were told. We tried to get answers for those concerns. We tried to make sure his life accommodated those concerns. We had people tell us we were wrong. Oddly, not medical people.

Anyhow, they were wrong. We were right. It doesn't feel good to be right this way.

2. Billy continues to be awesome.
This new information doesn't change much in reality.

Billy is brilliant. He is insanely funny. He is inordinately happy. He is incredibly clever. He can do stuff that I can't dream of doing. He has amazing ideas, and he has enough follow through to make them happen. He has an immensely good sense of himself, he is very clear about his own limits and he is fearless in challenging them.

He is beyond the child we dreamed of... he exceeds the child of which we dreamed.

We continue to do what we have done since the first moment we knew he existed. We love him like we have never loved before. We listen to him. We put him first.

We do every possible thing we can to ensure he is well and happy and Billy.

We don't belittle him. We don't infantalise him. We don't think he is 'less than'. We don't misrepresent him. We don't pity him. We don't find him a burden.

I speak about his challenges in the hope it might help other people facing similar issues. While some may see this as a self aggrandising grab at notoriety, I see it as an opportunity to give other people a heads up. It most definitely breaches his privacy, and as his parent, that is my choice. As much as he can understand, as an almost nine year old, he does. When he is 18, he and I can slug it out about the fact that strangers know how his bowel works.

Here's why autism parents need to talk.

Autism world is full of information. Some of it is relevant. Some of it is crap. Some of it is pure spin. Some of it is genuine gold plated messages from the gods.

There is no way of knowing what is relevant to you and your child. No way. The doctors can't tell you with any authority. The teachers sure as hell can't hand you a crystal ball. You get the diagnosis, and then you start... doing. Blindly half the time, but driven by the hope you are doing the right thing. Hoping blindly that you are driving in a useful direction.

As a parent, there is nothing worse than not knowing what to do to help your child. It's not because your child is a hopeless case. It's not because your child is worth nothing. It's because they are your child.

You want to help your child because they are everything, because they are the moon and the ocean and the dinosaurs and the phosphoresents and the first star of every single night. You want to help because every single fibre of your being is buzzing with the message that you should. You want to help because you knew from the moment your child existed that you would, no matter what stood in between you and them.

Like it or not, there are days when autism feels like a giant brick wall between you and your child. Other days it feels like you and your child are behind the wall, and the rest of the world can't see through. Like it or not, autism is the thing you didn't expect. It's the new information. It requires... orientation. Acceptance is a given. Awareness is what we live.

Let parents be parents. Let us play our part. No matter how it looks from your point of view, whoever you are. Other parent, autistic adult, teacher, doctor, neighbour, crabby old lady at the shops... have your opinions, but share them sensitively. Share them with the knowledge that our children, who are autistic, are our children. Not our possessions, not our projects, not our experiments.

Our kids. That we dreamed of. Of which we dreamed. Ugh... isn't there a song about this?

As a parent, you want your child to have access to the world - whatever that world means to them, however they see the world, whatever they want to do in the world...

So, we get to the end of this year's countdown.

1. Billy plans a new holiday for 2013.
The first one worked so well, he's ready for another shot at the world. On his terms.

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