Dear Pimples, I Hate You, Love Eldest

This motherhood gig is rough.

It's not like that snuck up on me, what with the speech delay, therapy playgroups, nappies until the age of six, echolalia, nuclear meltdowns, NEPs (negotiated education plans) or puberty.  No, I knew all that was merely the supporting act for what was to come.

One night while I was sleeping - it had to be then, I can't account for it any other way - Eldest grew a foot and a half, skipped two shoe sizes, started 'changing' (uh-huh, that kind of changing) and amped up the sass to about four billion.  It's phenomenal how fast this is all happening.  And I am freaking the heck out.

At 5'4, he is as tall as me now.  He is twelve.  TWELVE.  Two months ago he still needed help turning the taps on in the shower (for fine motor/safety reasons); now he screams if I so much as breathe near the closed door. We started deodorant this year, "like Dad's".  And he wears trunks now - not briefs, trunks - but for gosh sakes woman, not the purple ones! Purple is the bad colour! (bit of poetic licence there). He eats like he's preparing for hibernation, which in reality is probably pretty close to the truth because I seem to remember an awful lot of sleeping in as a teenager.

But the newest installment on the road to full-blown teen angst? Pimples.

They seem to have popped up overnight.  I don't remember pimples at twelve, but then again, I was probably too busy reading Enid Blyton and The Baby-Sitters Club to bother looking in a mirror (substitute Nicholas Sparks and blogs now and not much has changed!)  Of course, this couldn't just be rectified with a quick chat about facial hygiene and the passing of the baton acne wash, no sirree.  We're talking Yippee! It's Another Autism Teachable Moment ™. Fun for the whole family!

So this is why at 8:45 pm tonight I found myself demonstrating the correct technique of applying pimple wash to one's face without chemically burning one's eyes.

A long time ago, in high school I think, we had a teacher give us an interesting exercise.  Imagine explaining how to make a cup of tea to someone who does not know what a cup, a teabag, the kettle, or a spoon is.  You cannot use gestures. Pick up the tall round thing with the hole in the middle.  That flat thing that looks like a stick ("No, you can't say that, assume they don't know what a stick is either") is used to move the white powder ("That could mean any kind of white powder to them") to the round thing with the hole.  That bag with the string ("What's a bag?") goes in too.  Now fill the big thing with the handle up with water...you get the idea.

Teaching Eldest how to de-pimplify was a bit like that.  Or a Fawlty Towers episode.

He didn't want to put water on his face.  He didn't want to make bubbles with the wash.  He nearly lost an eye to the soap and an errant finger.  Rinsing his face afterward was even more fun with the concept of cupping one's hands together to hold water long enough to splash on to his face being utterly lost on him.  It was hilarious and tragic all at the same time.

This is one of those things that people in the outside world don't ever have need to contemplate.  When their kids get to be about ten or eleven, Mum or Dad sits them down for 'the chat' (even if the Big Chat has come and gone, there's usually the Fun Specific Facts About Puberty chat to come). You might explain things once, with reminders every now and then to put on deodorant, shower and brush teeth.  If crazy things start happening to, or coming out of, their bodies at inopportune times, hey, it's all good, it's normal, don't sweat it.

Autistic kids' brains don't work like that.  Most of the time with Eldest, an instruction or habit or snippet of important information has to be repeated often, sometimes dozens of times, before it 'sticks'.  For some things you need to physically show him how to manipulate his hands, or work taps, or operate simple machines (a toaster, for example - not a lathe, in case anyone was worried). It's all about the visual, miming behaviours for him to mimic later.  It can be really tedious and you need a ton of patience.  Tonight, for example, he was Not In The Mood for instructions.  As we were washing our faces together ("This is how you move your fingers on your cheeks.  Watch out for your eyes.  Keep your mouth closed") he was snarky and uncooperative.  Which means he wasn't paying attention, therefore almost certainly rendering tonight's little demonstration completely ineffective.

If it had been Middle or Youngest, I would only have needed to tell them where to find the cleanser in the cupboard and know that they'd do what they were asked, properly, using a skills set they'd already learned by default.  In fact, Middle would probably have spent the time planning experiments to measure the differences in suds produced by adding different amounts of water to the subject's face.

Youngest would have performed the entire task while singing Taylor Swift's latest tune and twirl-dancing around the bathroom.  And then finished it off with a gymnastics 'ta da!' gesture with arms above her head.

Eldest...well, it's interesting.  Anything requiring an electronic device and we're home free.  That kid could reprogram a DVR underwater (probably after having pored over the manual - for fun - as light bedtime reading the twenty-nine nights prior) It's just the repetitive, 'practice-y' kinds of things that he struggles with sometimes.

God help us when he needs to be taught how to shave.

I wonder if there's an app for that?

When Autism Kicks Your Butt

Most of the time I think I cope remarkably well with the day-to-day struggles autism brings to our lives. At this stage, nine years post-diagnosis, we're old hands at the routine. Unnatural (but sort of cute) obsession with game shows? Check. Reminding him to pull his shirt out of his shorts after going to the toilet so he doesn't look like that disabled kid? Check. Standing firm during tantrums and fussing and back-chatting and oh-my-gosh-kill-me-now puberty? Oh heck yeah - check, check, CHECK.

But every now and then, it stops being an ordinary part of our day. Every now and then, and over the smallest of things, I find myself tearing up.

This is not easy.
This is not standing proud in the midst of adversity like a blond-braided, horn-wearing Thor-dette.
This is quietly falling apart.

It might not be for long - maybe just a couple of hours - and it may not be very visible, but it happens. I try to keep moments like these largely hidden because honestly? Ninety-five percent of the time I'm fine, I don't take crap, I don't suffer ignorant idiots and I sure as heck won't hesitate to take an uninformed person down a peg or two if the occasion arises. I fight for my son, and I fight hard. I just need a break from fighting against him sometimes.

He can't help it, I know. This is just him, wrapped in confusion and hormones. I do not consider him to 'have' autism. Autism is just a part of him, of who he is - it colours every thought, every emotion, every relationship that he has - but you can't separate him from it in the way that you can with measles or a bad cold. I don't think he will be cured (for the record, I consider autism a neurological disorder, with a screwy-gene trigger, and not something he 'caught' from vaccinations - I respect your opinion, please let me keep mine). Though I hope and pray that autism gains more acceptance as time goes on - and not just the puzzle ribbon-wearing, benefit dinner-hosting, support-you-from-a-distance acceptance, but the real, solid, I'll-be-friends-with-your-son-in-the-school-playground-even-while-the-cool-kids-watch type - people need to know that it is not always like this. There's a whole group of us who wait for a quiet moment away from being 'Mum' and just cry. And then we strap on the armour, pick up our spears, and go out to fight another bear tomorrow. We aren't superwomen. We are not impenetrable. And most of the time the bad stuff hurts like a b*tch.

It was easier when he was younger, in a way. A fussy four year old isn't an anomaly - but a fussy 12 year old who is as tall as his mother behaving like a four year old certainly is. Though he has since outgrown the full-blown nuclear meltdown stage (an autism meltdown is a wonder to behold, truly), he still has odd behaviours. He still stims (though much reduced, his hand flapping will never fully leave him), he still speaks oddly and occasionally gets confused with the meanings of words and structure of sentences, he still gets in your face about whatever his current obsession is. When you talk to him for any length of time, as awesome as he is, it's very clear that he is affected. This is who he is.

But we are lucky. We are so very, very lucky. Some days I have to work hard at reminding myself of this, but we are. He had no functional speech until the age of four, but we got there. He wasn't toilet trained until his sixth birthday, but damned if we didn't conquer that mountain too. He does not have an intellectual disability. We are yet to see - and will hopefully never see - seizures. We have had great, selfless special education teachers along the way - true angels on earth.

But it doesn't stop the worry. Nor the ignorance seemingly built-in to a large percentage of the population. And though people will still continue to tell you you're doing fine, that you should be proud of such a well-adjusted kid, that you're a great mother - you'll still find it hard to believe. After all, you can't be there all the time to explain him, to protect him, to speak for him, to applaud him. There will be hurting, tears, bullying. And you'll tell yourself every day that you need to cut the rope, to let him go off and be hurt because while all that is happening he is growing and learning and accepting and maybe along the way (you desperately hope) others are growing and learning and accepting too. But this is the most painful thing in the world for you to imagine because all you can see ahead is an enormous blazing fire, and what you're expected to do amounts to dumping your child right in the middle of it and expecting him to fight his way out with no scars.

It's insanity. It's the opposite of what is implanted into every nerve-fibre the second you become a parent. It feels like you're feeding him to the wolves. Willingly.

I know - or rather, I hope - that he will be fine. I repeat this to myself every day like a mantra - he'll be fine, he'll be fine, he'll be fine. And though the support of friends and family will follow you, and though for every bad day there are ten good ones lined up to take its place, there's always doubt. Maybe he won't be fine, comes the eventual whisper.

And alongside it, the faint smell of smoke.

The Dignity Of Risk

Just a little something to contemplate on a Saturday night...

The Dignity Of Risk

What if you never got to make a mistake?
What if your money was always kept in an envelope where you couldn't get it?
What if you were never given a chance to do well at something?
What if your only chance to be with people different from you was with your own family?
What if the job you did was not useful?
What if you never got to make a decision?
What if the only risky thing you could do was act out?
What if you couldn't go outside because the last time you went it rained?
What if you took the wrong bus once and now you can't take another one?
What if you got into trouble and were sent away and you couldn't come back because they always remember your 'trouble'?
What if you worked and got paid $0.46 an hour?
What if you had to wear your winter coat when it rained because it was all you had?
What if you had no privacy?
What if you could do part of the grocery shopping but weren't allowed because you couldn't do all of the shopping?
What if you spent three hours every day just waiting?
What if you grew old and never knew adulthood?

What if you never got a chance?

From Linda Stengle's book, Laying Community Foundations For Your Child With A Disability.