Friday, May 25, 2012

I'll save you some time...

Given the acceleration in the diagnosis rate, I'm assuming there are little bunches of new autism parents popping up around the world every minute or so.

In case any of them have internet access, and might happen to happen across this site, I'm going to cut to the chase on a few common autism related internet traps.

1. Research studies about autism
It may surprise you (it seems to surprise a bunch of experienced players) that every single autism study will not relate directly to your experience of autism.

Don't be shocked. We're all different. We may not know how different, or how to differentiate our difference, but... do not feel confused if you did not have a fever or a few too many pizzas while you were pregnant. Do not feel left out if your child didn't have a billion antibiotics before 12 months. Lots of people may have.

They are studies. Single studies, with their own cohort specifically chosen to validate a hypothesis identified before the study began. A study is only very rarely an unbiased search for random meaning. They are created and funded, for the most part, specifically to prove a point. I'm not saying they are lying, but I am saying they have a specific focus. Not universal meaning, specific finding. Valuable, in and of itself, even if it doesn't relate to you directly. All a part of the big melting pot of autism information, reflective of who and what inspired whichever study you may be looking at with a  squinty, questioning eye.

The fact that a study doesn't reflect your life/child/relationship/health does not invalidate that study. It simply means it relates to someone or something else. Not a conspiracy, unless it's on a fast track to making quantum change in a nanosecond. Which would be... unprecedented and more like a Ridley Scott movie than actual life.

Chill. Or go to university and do your own study. Stop by a big company for funding on your way. You'll have a better chance with their backing.

2. Media articles about autism (especially those in major newspapers/news websites/TV networks websites)
They are not information. They are news. News is not information. News is pictures and words designed to get people to make their eyes stay still long enough to look at the advertising that surrounds them.

If a major news network covers an autism story, and you have a child with autism and are alive, you already know the information they are going to cover. If a news organisation with a specific financial, religious or political affiliation covers an autism story, they are not covering an autism story, they are speaking for their affiliation.

Please, for the love of all that is sparkly, accept that the information that is useful to you will not come through the media. Not unless there's some revolutionary surprise finding that cures everyone with autism if they want to be cured, magic bullet style. And, the likelihood of that happening is so limited, we may as well all wait to see Jenny McCarthy's boobs in the media again.

Put your own biases aside, and go to the source. Read the media reports, see who did the study, and go to their website. Read the study, work out (if it's is disclosed) who funded the study and understand what bias that may or may not have introduced. Try not to judge, just read. Learn from the data as much as the findings.

My own personal tactic is to read everything I can get my hands on. Is it exhausting? yes. Is it frustrating? To the point that some days I throw things around the house. Why do I do it? Because it's not about me, and it's not about Billy, it's about all of us.

3. The cult mentality
It probably won't be long before you start to feel as though you are expected to join one camp or another, in virtual autism world.

Are you pro or anti vaccination? Within that, are you a vaccine safety advocate or one who believes the only safe vaccine is one that isn't made at all? Do you believe autism is a gift from the nerd gods, or a curse from Satan? Do you believe therapy is torture or a vital part of life with an autistic child? Mainstream or not? GF?CF? No Fs at all?

If you believe one thing, can you change your mind? If you are supportive of one camp, can you also be supportive of another?

I have no advice, to be honest. Do what you think is right. Accept you will change your mind as your child grows and improves or not. Toughen up, because it's rugged going, and there's nothing wrong with that. It's parenting on metaphorical steroids. Family action writ large.

My experience, and the experience of most autism parents I know, is that things get different. Sometimes better, sometimes worse. It's easier in some ways, and much, much harder in others. There are fewer kids with less needs that there are kids with more needs, if that helps at all.

So tying yourself to a tribe, may give you safety in numbers (and no-one can deny that feels safer). If that's what you need, go for it. If that's not the kind of person you are, then strap yourself in. It's going to be a bumpy ride.

4. The 'possibility' message
Much of what you are offered as an autism parent is about the long term. The tough game is knowing what will make a better future and what will make you resent the bejesus out of the person that told you it 'would work'.

This goes for therapy, diets, supplements, ancillary products, technology etc all of which will be hawked at you ad nauseum (and I often mean 'ad' nauseum... on the edges of your FB page/blogs/gossip pages... oh hang on, that's my internet usage).

Again, I got nothing.

Well, nothing but my experience and the experience I have observed thus far (which is clearly NOT universal truth).

Health is good. Listen to the people who talk about health.
Best possible diet, good ASD friendly medical care, supplementation under supervision (again by someone who gets autism), acknowledgement that autism is medical in nature and that 'lots of autistic kids have/do this' is NOT a reason not to treat it.

Calm is good. Spend a bit of time on the stuff that promotes calm.
Very few people learn anything positive by being stressed or while being stressed. Push whatever boundaries you are comfortable with, but get a good sense of your child's thresholds too.

Change is possible. But question the cost. All the costs. Remember people are selling you stuff, not nominating themselves for sainthood. They are running a business, or promoting a campaign. It's not evil, it's business. Be shrewd.

I'm not saying be cynical, not at all. I am saying make decisions based on your child, not on what the proffered service/product/program promises. Autism is a boom area. Make sure that boom isn't going to shatter your child's health/well being/financial future, or your brain.

We haven't been doing this for all that long (even though it seems like forever).

Billy will be nine at the end of this year, so autism has been officially in our lives for six and a bit years. There are people who have been doing it much longer, who know waaaaay more than we ever will. And things change each and every day.

Just as much as we sail from the fun bits to the horror stretches on this rollercoaster ride, I am watching families crash, burn and re-form Terminator style all around us.

What's going to happen to you and your child? No-one knows. It may go better than you ever dreamed. It may not.

But, I can say you are likely to feel a lot better about whatever happens if you are not spending a lot of your time arguing with a computer/TV/iPad screen. As hard as it is, cut your technology some slack. Treat it as you would a naughty puppy - with love and fair limits.

And do not try to rub its nose it it's own crap. It won't notice, and you'll just get your hands all mucky.

Finally, remember that the same technology is there to entertain you. Take those minimal moments to read some nonsense, listen to a few tunes, watch a few episodes of 30 Rock. Whatever floats your boat.

Look after it, and yourself. There will be enough hair raising moments when you need it to work out how to save more underpants, how to make ingredient free snacks, or where bone up on relevant legislation to advocate for your child.

Sorry, that's my life again.

Wednesday, May 23, 2012

The formula for learning...

It's been almost a year and a half since we started homeschooling Billy.

Well, when I say homeschool, I do not want anyone thinking I am some kind of spontaneous curriculum super-genius. I am far from it. The homeschooling we do is called Distance Education in Australia. It is tightly supervised and heavily supported by the Department of Education homeschooling delivered by a home supervisor (me). It's usually the preserve of kids who are living in remote areas, traveling the world or starring in a Hollywood movie.

Resources + Support + 'Home' = Distance Education

Distance Education is also for kids with medical conditions that make attending school challenging. In some States of Australia, autism in itself is a classification, but alas not where we live. It sounds crazy to say, but for now, I am deeply grateful that Billy has medical issues, because if we had to stop doing Distance Ed, we would be sadly adrift.

Also, Billy would not be learning anywhere near the amount he is now.

There are a bunch of reasons why I think it works for him, ranging from the obvious (our house is not full of children) to the less obvious (there's no chance he will wander out a gate and get hit by a truck).

We can take the curriculum tasks and pull them apart, until we find some Billy sized entry point. We can complete things in short bursts. We can jump from one task to another, as his butterfly meets goldfish attention style requires. Overall, he is learning, which is a gigantic step up on what he was doing when he was attending school.

Distance Ed + Billy = Learning

It seems to me, that a huge proportion of the decisions that are made about the education of ASD kids is based on the premise that the way we educate everyone, is the right way. This presupposes that we are thinking the closest we can get to our ASD kids behaving NT, the closer we are to success. This means NT good, ASD not as good.

The message we are giving to ASD kids then is 'be more NT, and you will have a better chance of...' what... success? survival? normal?

Billy > ASD < Better?

I think this premise is nonsense. It's as stupid as thinking we should teach the vision impaired as though they can see the same way a non-vision impaired person does. I do not know what Billy is capable of, learning wise, but I know he will not find that out for himself, if I ignore who he is in my insistence to make him fit the system.

I will never say never, but my gut has always thought Billy was being tortured by school.

Right from the beginning - playgroups, EI, pre-school and primary school. It has never felt right to leave him there. Not because I'm irrationally over-protective (though I love being told I am... please, say it again, go on...). Not because I don't want some time to oh, say work, or exercise, or catch up on the sleep that has been denied me by the McMansion builders next door. 

It hasn't felt right because he has always seemed under siege in a group of children.

We know now, this is because his sensory dysregulation is accompanied (chicken or egg style, perhaps) with a condition called cochlear/canal dehiscence. In essence, bone conducted sound (vocalisations) are heard at way higher volume than in folk without this condition. Even when Billy was a baby, we knew there was something unusual going on with Billy's hearing. It was the one and only thing, pre-toddlerhood, that had us concerned. Thanks to our friend Dr Ears, and his 'out of the box' style of thinking, we have some weight behind our 'over-protective' parenting instincts.

Dr Ears + Billy = Information

It hasn't just felt like torture, it is actually torture for Billy to be left among a group of children. It's got nothing to do with those kids either. It's any kids. Well, any kids with voices. Add the cacophony of childhood to the dehiscence, complex SPD and the anxiety of autism, and you have small human shaped bag of adrenaline. Fight, flight or play trains. That's pretty much all he had.

Unsurprisingly, that didn''t leave much space for learning at school, and in reality, it accelerated the decline of his already teetering health.

The remaining part of that formula, in his last year attending primary school was a teacher lacking in... something. I can only speculate on what it was (experience, compassion, flexibility). It can't have been experience, because we were often informed how much of that she had.

Teacher - ? =  Disaster

We were left, at the end of Year One, with a document assuring us that our understanding of Billy's educational needs were completely wrong, and a nasty taste in our mouths that took a couple of expensive lawyers and the Australian Human Rights Commission to expunge.

Also, Billy couldn't write, or count, or (it seems) complete any actual schoolwork. He was seven years old.

School + Billy = Giant Steaming Mess

So... for the beginning of Grade Two, we threw ourselves at the mercy of Distance Education. We bought a lot of coloured pencils and stationery and things to count with, and we put our heads down.

For the beginning of Grade Three, we added another medical condition (seizures) and a bunch of useful apps.

It's been a revelation to be surrounded by educators who are boundless in their commitment. They don't know everything (who does?) but they know how to find out anything. They listen to Billy, they see his strengths and they are tenacious about finding strategies to address his challenges.

We're back to the start: 

Distance Ed + Billy = Learning

It's not perfect. It's not what we thought we were going to do. But, it works.

In all honesty, I wish Billy was one of those kids who could be left to his own devices, learning wise. He is not. Left to his own devices, he would be sifting dirt, spitting on trains and peeing outside. If he was twenty-five and independently wealthy, that would be an awesome set of choices, but he's not.

He's eight. He's autistic. He's got a very short attention span. He's in constant movement. He's terrified of sudden vocal sounds. He's got the sensory profile of a chinchilla. He's sweet and funny and delicate.

If we had to send him to school outside of the home, we would have to medicate him (and I mean no judgement of anyone who makes that choice).

Even so, he would need constant redirection (read, a full time aide. read, inconceivable).

Even so, nothing would protect him from the sounds of school (and trust me, we have every possible contraption, we've tried every possible therapy/intervention/supplement, we've read every study on the internet and a couple of others we've cajoled out of academics).

He needs individualised education - catered for his needs, filtered through his challenges, accommodating his learning style. So does every kid, but some other kids can learn to suck up a less than appropriate school experience. Billy can't, and no amount of wanting/dreaming/aspiring will make it any more practical that he might.

While we wait for the fairies of liberal, free-thinking, resource heavy, individualised education to dump their glitter ball of a school in our district, we choose this.

Us + Support + Understanding = Progress

Which genuinely works better than how we felt leaving him at school in the end:

Roadrunner + Anvil = Pointless Recurring Disaster

Monday, May 14, 2012

Greetings from Poo Purgatory...

I am known for my tales from Poo Hell.

We have been citizens there since Billy had Transverse Myelitis when he was three and a half, and had a temporary workers visa for maybe a year before that.

In Poo Hell, we have our own language. We chat about constipation, megacolon, motility, Bristol Stool Chart, PPI, PEG 3350, frequency, elimination,  diarrhoea, all sorts of --cols and laxs , oh my lord what's that, I don't remember him eating that, no doctor I don't agree... you get the idea.

Well, I don't want to jinx it and speak too soon, but I believe we may finally be beginning a kind of a holiday in Poo Purgatory.

This year has been a slow, gentle journey to health for all of us, but particularly Billy. After the seizures began, we figured we had to work as hard as we could to get Billy as healthy as we could get him. We had hidden behind the 'but he's a picky eater' thing for too long. Yes, he is a picky eater. So, we decided to get good in, in other ways.

We started juicing fruit and vegetables and making smoothies. We took out all dairy, and reduced gluten (it's a long story). We started high grade probiotics, b12 and ASD formulated multivitamin powder. We hid the supplements in the juice and smoothies, and in fruit puree. We added super foods (goji berry, raw cacao, spirulina, kale, spinach, flax seeds, hemp seeds and coconut, flax and hemp oil), again hidden in smoothies. We started by putting the smoothies in the same room as him (and it was a battle), progressed through looking at them, to licking drops of them to (now) drinking 100-200 mls a day.

With the probiotics, we began with teeny tiny amounts (literally a micro-pinch), and now we are up to a full dose (of 45 billion CFUs) mixed into spoonfuls of fruit. A couple of weeks ago, we added Lactoferrin SB, which seems to have been a teeny pre-biotic silver bullet.

We retain the doctor-recommended Movicol and last used it two weeks ago. I'm not averse to using it when needs dictate. It's hard to maintain the volume of superfood, on days when we are busy or he is not 100%.

We have a bunch of further diet aims. Take out the gluten, get more alkaline, eat more raw food, add true fermented food, increase the amount of conscious good food choices he makes... the list is truly endless. But here's the crazy thing.

We were in a place where we thought nothing was possible. We were convinced he was just destined to be unwell, that his gut was always going to be bad, that his diet was unfixable, and that we risked starving him if we tried to make it better.

I want to be really clear about this next point.

We were stupid. We were blindingly unbelievably mind-bogglingly wrong.

The more we tried, the more he tried. The more he tried, the braver he got. The more his gut heals, the more he understands the power of good eating.

It's not perfect. He still begs for crap, and sometimes we give in. He still throws himself on the ground and bargains for the 'last time' sip or spoonful of superfood. But...

Every day, without fail and without sacrifice to the great god of underpants, he goes to the toilet (almost completely unprompted) and evacuates his bowel (how disgusting does that sound?) completely.

The bonus Mummy upside is, whatever Billy gets, I get. Juice, smoothie, probiotic... I'm taking it too. I take a grown up vitamin, where he has his ASD one. We have overhauled our diet, rarely missing out on the daily recommended amount of fruits and vegetables. We eat organic, we drink buckets of water each day, we exercise.

We all still eat the odd chip, the odd bit of chocolate and the grown ups have the odd glass of alcohol. We are not monks. We are just trying the best we can. And it is having an effect.

It could all turn to custard, or constipation, in the blink of an eye, but a tiny gateway has opened so we could leave Poo Hell and hang out somewhere less stressful. It feels easier for the first time in five odd years.

This whole game makes me think about autism and health, about what we know and what we don't know. Because really, it strikes me every day, that we don't know much at all.

That whole 'first do no harm' dictum is so often an excuse for doctors to first do no good, either.

I have no idea what I'm doing, and I find that ultimately scary as hell. I listen to all the doctors, I read everything I can, and I take leaps of practical faith when I can. I'm sure I could be braver, I'm sure I could be more cautious too. When I am not sure of, is that the medical fraternity is committed to making any positive change in the lives of autistic people.

The vaccine safety debate is murked up with money and crossed purposes. Adverse reactions do happen, and the doctors know it. We had to sign a lot of papers acknowledging that reality when Billy had Transverse Myelitis. We are not the only ones.

And it's not just vaccinations. It's autistic health more broadly.

As the group of families in The Autism Experience ages, more and more are being diagnosed with serious illness - chronic GI issues, auto-immune disorders, lifelong serious mental health conditions, mitochondrial disorders, metabolic disorders... in many of our kids, health is a bigger concern than the autism that brought us together. Kids are slipping in school, their motor skills are fading, their guts are struggling, they are sick with stuff the doctors can't pin down - more and more and more.

It makes me wonder why the medical fraternity are not researching the immune systems of people with autism. I wonder why they are not profiling the immune systems of people who have survived adverse reactions to vaccines, and see if they can find a pattern, so maybe we could predict (and lessen) adverse reactions before vaccination happens. I wonder why they are not looking at the similarities and differences between autistic subtypes. We've got a whole wide world of controls out there... a world wide willing cohort of parents and siblings for genetic profiling... a world that needs to work out how it's going to survive an ever increasing social and medical services load.

It seems complex. It's all too hard to sort out and sift through. I know that feeling.

But as I lean nonchalantly (and gingerly) against the Poo Gateway, I think... come on fellas. Haul your crap together and do something about it. We are trying to. Being the sort of person I am, I would quite like a set of reliable guidelines. I'd like to feel like you are with me, not against me. I'd like to feel a little less anxious (and eventually enraged) every time I take my son to a doctor.

Contrary to the image the media likes to portray, most autism parents, especially those with obviously sick children, want nothing more than... um... well children. Our passion becomes anger so easily because we are frightened for our children. There is nothing more confronting than realising the person who is responsible for healing your child, has absolutely no idea what they are dealing with. Actually there is, and that is not knowing any better yourself.

I am Billy's Mum. I am the one who makes the bad stuff go away. I am the one who makes it all OK. That's a mummy's job, with her hands and her heart. Some days, especially the days we are stuck in hospital, I suck at that job. I am useless.

Today, though, I feel like we have earned a tiny win. It is one of about a bazillion wins that are necessary in his lifetime, but it is one. It is partially won. We kind of know, a sort of something that might just work for us.

If there is any chance that the doctors and researchers could catch up with us parents, we'd be really grateful. Actually, if they could join us on the same road, in the same race... that would be awesome.  We have found out a lot, but it could use some validating. You have found out a lot, but it could use some humanity.

Or some poo. We have lots of poo. Now.

Sunday, May 6, 2012

At Hopeful Parents...

I'm at Hopeful Parents today, with the phone off the hook.