Living in the cracks of life

Sometimes people fall through the cracks. You’ve heard that right? It’s a fairly well known statement. It alludes to those people who for one reason or another get missed by whatever system is supposed to support them. As long as your caught up with it’s not a long term problem.

The problem comes when you live life falling through one crack or another. It signifies that support system. Isn’t. Isn’t doing it’s job, isn’t meeting the needs or simply isn’t there.

A follow up to last weeks attempt to put darling boy back in school again after a 3 year stretch of teaching him at home has once again shown me that we live life falling through the cracks. I’ll explain. For any non New Zealanders comes with a brief explanation of our state school system.

Child starts school at 5 when they are assigned the some-what intelligent class label Year 1. They then progress through the primary school levels ending at Year 6 when they are 10. There’s slight variations due to what month your child’s birthday is but basically it’s as above.
Then for 11 and 12 year olds – again slight variation the children are at years 7 and 8 and a vast majority go to Intermediate school for those 2 years.

So then logically at aged 13 child is considered Year 9 and off to high school for 5 years.

The year level of your child is dictated solely and only by their age. It is no indication of their academic ability and as such it’s an automatic.

We went to visit a state primary school to see if darling boy could attend there they have a good reputation for support special needs students and we felt pretty positive with support from the Education Ministry the govt department charged with schools and schooling and funding. Cognitively darling boy sits somewhere around a 5 year old level in some aspects and we all felt he’d do well there. But no as he is technically a year 7 no go. He needs to attend an intermediate school with children his own size and age.

BUT here’s the rub. None of the schools he should attend because of his age and size can manage his special needs in an effective manner. Sure they’ll take him but he’ll be the only child there with his level of needs, there’ll be no special equipment, no safe spaces (bar a mostly empty classroom) and he’ll be the only child there with a teacher aide who due to funding will only spend part days with him so when there’s no teacher aide there’s no school.

SO apparently the solution may lie in asking the local high school with a special needs program to take him as an under aged student. 2 years under aged. Mixed in with adult sized children.

So the school he needs to be at he’s not allowed at, the school he’s supposed be at he can’t be and the school he shouldn’t be at he might be.

There is a solution. There are dedicated special needs schools around the county. The nearest one is an hours drive away, he’s not eligible to attend. There’s one we found. It’s fantastic. In a city with some dear friends and family. A school of 56 special needs kids aged 5 through 21. We’ve had a look at it’s beautiful. They even showed us what would have been his classroom. 7 children all his age all with autism 4 teachers and wonderful rooms full of sensory toys and playgrounds with trampolines and swings and adult sized tricycles. It’s 400kms and $8.500 dollars away. It’s an impossible dream. But at least dreams are free.

I love my darling boy so much, but I am tired.


When will it sink in?


A bad day with darling boy, something happend this afternoon and he became utterly uncontrollable. As his parents we have been under immense pressure this past fortnight, living at the whims of other people, money, work, weather, whatever it’s not important. What is important is how we dealt with it. That is to say not very well at all. But it’s created a need to try and process it so I can hopefully get some sleep before work in the morning.

When you’re handed a diagnosis of a young child, sometimes a baby in our case a toddler it can be overwhelming, daunting, frightening and a host other negative emotions but really if you’re taking about an autism diagnosis not much changes to begin with.

Sure a lot of things make sense, you begin to understand why, you have a reason or an excuse for so much, but other than a series of meetings if your child is under 2 there’s not an earth shattering change to your life. They still need to be fed, and have their nappy changed, you play and teach and put them to bed and hope to all things they’ll actually sleep much like any other kid their age.

The insidious nature of darling boys variation of autism means it takes a while before it dawns on you, the enormity of life as you know it. When they’re 3 and off to preschool and lining up the crayons while their teacher aide tries in vain to get acknowledgement. When they’re 4 and the goal for the year is to touch a piece of fruit at snack time. When they’re 5 and supposed to start school but you’re waiting for funding applications. When they’re 6 and still pointing to everything they want because there’s no language yet, When they’re 7 and you’re wondering if they’ll ever be toilet trained and what are you going to do when they no longer fit the cheap nappies. When they’re 8 and they’ve never been to a birthday party and have no idea what Christmas is. When they’re 9 and still watching Bob the builder and Thomas the tank engine. When they’re 10 and you can’t remember the last time you had a night to yourself because they no longer sleep. when they’re 11 and refuse to wear clothes around the house. Gradually year after year it’s reenforced, but still the enormity of life to come doesn’t quite sink in.

As he gets older the gap between him and his peers grows and we begin to really feel the massive weight that is raising a boy like Boo. Or nights like tonight when the last thing we had time and energy to deal with was him, being…him. We needed a nice quiet calm happy self involved child that was perfectly content to watch little red tractor on 4 different screens at once so we could prepare for a house inspection in the morning. What we got was a screaming, out of control, hyper-manic, over-demanding, rage monster that smashed through the bathroom wall we had fixed only hours before. Because the dog touched him.

We needed someone to, take him for a few hours or somewhere to send him just to get the jobs done, if only he could have gone to a friends house or hung out with an Uncle or Aunt or Grandparent even. Kids his age are going to the movies or the swimming pool by themselves. That gap is right there, it’s in our face screaming. Your kid isn’t like other kids. Seeing, watching, hearing. Your kid is different

There’s no time for bitterness, and no point. Sadness yes, but envy, jealousy? No. I don’t know what shape life is forming into, I can’t quite make it out I’m too busy sculpting it.I can guess how it will look, but life has a habit of changing the game before you even see it coming. Sometimes good, sometimes bad, but it’s never what you plan for it to be.

But we’ll ride it together, darling boy and us.

Going through it.

Sometimes you just have to go through it. I found myself saying this to a person at work today. “You just have to go through it” We were talking about darling boy and the violent rages he suffers from. Work guy said to me “yes but you see a pyschologist about it though” Telling me, not asking me.

I was gentle but honest and honesty is scary because what happens sucks. It’s horrible, awful and frightening but it happens. If darling boy was any other kid or person or even an animal  things could be done. But he isn’t. He’s an intellectually disabled 11 with severe autism and as such I just have to go through it. And there’s nowhere to go and no one to turn and very very few that truly understand what it’s like to have no choice on earth other than to just go through it. And that’s ok.

Let me try and explain if I can.

First there’s the trigger. It can be anything,spilled drink,the dog barks, the website doesn’t load, I ask him a question, he gets a fright, someone interrupts him, he’s decided something.It doesn’t matter. The triggers are there, 100’s of them. So the trigger falls. BOOM. And we’re off. Screaming, slamming doors, throwing things and worst of all the hurting.

He’s a big boy. Same height as me now. And he weighs a fair bit too.Nowhere as much as me but then again according to the doctors I’m far too fat. Whatever, it’s essential padding. The violence can last for minutes or he can come back time and time again for hours. Sometimes I lose track. Doesn’t matter. Ripping my hair out by the handful hurts the most but mainly cause he does it so often my scalp is so bruised and sensitive. I get phantom pains now, like an amputee, at least I hope that’s what they are, phantom pains and not signs of something more sinister. Pinching my belly,under my arms and breasts also hurt a lot. He did it once and I really yelped in pain and he remembers now and tries to get that same reaction. Those pinches though, he uses his whole hands both of them,like you would to squeeze water out of a sponge. He’s got big hands.

There’s more, kicking, headbutting, a kinda punch he does, biting – that’s new, one where he squeezes on either side of my head, in each temple, those big strong hands. Grabbing and scrunching my face like it’s scrap paper. He’s only 11 but those big big hands.

Whatever, it doesn’t matter. I just have to go through it. It’s a cycle you see. A shitty, crappy, rotten, stinking, godawful cycle. We’ve spent years working with doctors, with therapists, with medication, with teachers, with anyone we have access to trying to understand but no-one does. Why? Why does he feel compelled to hurt,why can’t we interrupt his cycle, why can’t we redirect him? All questions, no answers. And there doesn’t have to be answers

Doesn’t matter sometimes you just have to go through it.

Bruises, broken teeth, scratches, concussions, hairline fractures and plain old pain. We’ve had it all. It’s not only me, sometimes dadda, or occasionally even his teacher or caregivers. But we’re not perfect, we don’t get nominated for sainthood here. Sometimes we have to fight him off, it’s awful. You know anything you do will make it worse but there is no option. We’ve checked, we’ve asked, we’ve protected ourselves as best we can but there is next to nothing we can do. No special technique,no martial art hold, legally I can’t be taught to hold him safely because it’s illegal for a single person to restrain someone. Its not considered abuse when we drag him off ourselves, hold him on the ground, push him away. It’s a form of self defense. We don’t always get it right, sometimes we’re so hurt and tired we do everything wrong, we scream and shout and lose the plot and do all those things the perfect parent brigade tells you is damaging and harmful and  we do it because there is no right thing. So we get hurt. And we just have to go through it. Let it flow allow him to complete his cycle of hurting. He knows it’s wrong, he says sorry when it’s over, but like us. Darling boy just has to go through it too.

And after? When he’s stopped and he’s crying and saying sorry mumma and rubbing our sore bits better?  We hold and hug and reassure. We put on our happy face and smile because he needs us to be happy. We wait until he’s calm and satisfied and then, then it’s time for us, time to ice the bruises, assess the injuries, take a breath and carry on.

And that is the now, when he’s a child, only 11. What about the future?

Yes I know “he’s only going to get bigger” And our options then are as they are now. To wit, nothing. Well, nothing productive, Call the cops? They’re not trained to deal with kids like darling boy. They’ll be the first to admit that. There’s nowhere to take him. Hospitals can’t deal and there’s no reason to have him there, so short of throwing him in a padded cell what help will he get? There’s special needs homes of course but if he’s too violent they can’t have him. Besides the risk of abuse is astronomical, already at 10 years old he’s been assaulted by a paid trained caregiver because he was violent. So it’s going to have t be us. And yes we’ll be older, and he’ll be bigger and everything that goes with those ideas keep us awake long into the morning. He’ll be eligible for a benefit, if they still exist in another 7 years. In 5 years we have to trot off to court to be appointed his legal guardians and take on the enormous responsibility that is raising an adult with a childs’ mind. Maybe we’ll be able to afford to buy our own home. I hope, I dream we’ll be able to afford that. Maybe in a quite village somewhere, where people will recognized darling boy and not judge or stare or literally throw stones like they do now. A house in the country with no neighbors to upset when he screams and yells. Where we can create a safe haven, with happy spaces with swings and tramps and swimming pools and dvds and the illusion of independence. I beg daily that this our future.

So why write this entry? For what reason? Pity? Sympathy? No they’re emotions that have no use, I write this to illustrate our reality. And to explain why I told this worker “I just have to go through it” That’s it just to explain, and to say please don’t admire us, don’t admire our courage. don’t put us on a plinth and tell us we deserve this adoration or that one. If you have to say something, try a variation of I’m sorry that happens to you and I can see how much you love your family.

And thanks, thanks for reading and trying to understand.


Back from the edge

I found my blog again, after a long long time. Along with the usual story of life in the way etc etc I needed to take a break from my writing as I found after my last post I was trying too hard. Trying too hard to be funny, trying too hard to impress people, trying too hard too be noticed. And it changed my writing from a form of expression and release and joy into bitterness and arrogance. In short, I wanted to be cool, I ended up being an ass.

Hindsight is awesome. Putting on my what were you doing goggles I have no right to claim ownership of autism. Everyone that travels travels their own way. Even in those tacky group tours, everyone experiences the sights and culture in a way that is meaningful to them and that’s how I need to view blogging about autism.

Our autism is not like anyone elses’ because our darling boy is not like anyone else. We don’t have the worry of wanders, we don’t get to have conversations about girls and sports and video games. So all I can do with this blog is be true, be honest. I can’t promise to myself to be polite lets face it I’m not, or respectful again, people piss me off.

So I’ll stop trying to impress and maybe that will be good enough. Life isn’t a popularity contest.

The agony of arrogance

We humans are a funny bunch of organisms. We think that because we can control these digits on the end of our hands and make them create words, it imbues us with some kind of special ability. 

But it doesn’t you know. it makes us gigantic asshats.

Now I know a little about a lot of things. I like to think I’m smart, intelligent, well read hell even ‘educated’ whatever that means. It’s that whole pride thing. I think being clever makes me special, unique, better than others. But a lot of us humans have that mind set. We need to be some thing praiseworthy. something that other humans seek to emulate, or compete with or be in awe of.

So we seek to better ourselves to prove our worth to the world, we take up a sport or hobby and post photos and tell everyone just how good we really are. We pretend to be bashful about it, we fake humility when what we really want is adulation.

We find interesting things to read and then jump onto facebook and proudly proclaim “this is really interesting I see what they’re saying and have to agree because that’s exactly what I think too” 

We run others down and joyfully point out the flaws and faults in their thoughts their logic their interpretation hell even their spelling and grammar because it some how proves us just that bit better. Makes us stand out even more.

We become fanatical in pointing out loudly just how thoughtful and compassionate and kind we are. How “evolved” we’ve become because we choose certain words or refute certain ideals “oh those idiots that think…….poor stupid people…..I feel sooooo sorry for dumb people”

Some how, some where we’ve picked a theme for our lives and insist on proving just how much better we are than the next person by proving just what an ignorant dickhead they are.

What the fuck folks? seriously. Reading something and believing it to be true because 14 other people wrote something similar and every “knows they’re leading experts in their field” and “who would be dumb enough NOT to do their own research after all”

that’s the agony of arrogance.

My arrogance almost cost my son his life. I thought I had something to prove by being more intelligent than the next parent. I thought I had the ability to do my own research and make conclusions based on solid scientific fact because i decided I was smart enough to know better. I wasn’t. And it nearly killed my beautiful innocent son. 

The agony of arrogance is believing yourself better than anyone else you talk too because no one could ever possibly understand you like you do. 

Don’t be a dick.

You’re not that clever.No one is.

Don’t be me.

Learn to listen. You might just learn.

When the stimming stops. Aka does he have the plague?

“Hi I’m Pip I’m the on-call paedatrician tonight, what’s up with this young man”

“he’s sick”

“I understand he’s autistic what’s telling you he’s not well”

“he’s not stimming and he’s not screaming”


Aka holy hell lady I think this kid is dying!

48 hours and the great autistic one was quite, still, asleep, not screaming, not stimming, not headbutting.

So by now we’re panicking and thus we become intimately familiar with the emergency department at 4am. And to answer your question, no, we don’t get seen quicker because ultimate dadda works there.


So the little dude has tonsillitis, – we think. After donning the bear attack suit Pip the pedatrician managed to lever open the jaws of death long enough to glimpse “big angry red” tonsils.  

So we’re getting antibiotics into him, and pain meds, lots and lots of pain meds, but that’s about it next to no fluids and no food for 4 days so he’s lost what little weight we’d put on him, but that’s ok. And in the mean time he remains a pathetic, whinging, whimpering ball of autistic misery. At some point the bad mumma in me battles her way to the surface and bellows out “oh shut up and harden up”

bad mumma is ignored.

And he continues to act as though his last day on earth was yesterday

And we remain tired, very very tired.

I appear to have pleased the old ones. Yay me

As an atheist and a smartarse it would be hypocritical to say the Gods love me these days so I’ll stick with Lovecraftian mythos and say the old ones like me. 

Cthulhu friend?

Or at least they have no desire to devour me, or maybe they think autism sucks. I know this cause at present I am 1) not dead and B) enjoying some very copacetic moments in life. 

We are at present trying to get control of The Great Autistic Ones need to headbutt everything all the time. And we have finally been able to access the food therapy group so sensory issues is our current flavour of the month.

I give you the following examples. 

It was suggested we try G.A.O. in a waterbed to help his sleeping. Ok great so we start searching of teh interwebs not liking our chances The universe delivers the only single waterbed in the country listed on our auction site just 5 mins up the road from us at the exact time I have a bumper week at work and have an extra $350 in the pay packet. What does the bed cost us? $315. And it has padded bits. yay. Go team Autism!!!


Next it’s suggested we try find some light up gadgets to see if they help settle him. Not only do I find an excess of cheap fibre optic lamps, plug in disco balls, huge lava lamps, but when cleaning out mumbleteen funky nest of a bedroom, we discovered he forgot to tell us he returned home 3 months ago from a trip to his Uncles house with little dude all time favorite light and music toy. 

This is the best toy ever, every autistic home should have one.

It even still had working batteries!!

And just today not 3 days after it was suggested we try a white noise machine but the first time I go looking for one I found the only one listed on our auction website.

Thanks Old Ones I don’t know why I have appeased you but I shall continue to do so.

Or maybe it’s that retroactive karma finally kicking in after all these years. I am suspicious and paranoid so I am waiting for that head shot from a flying farm animal or being struck by lighting take down that life likes to offer when we start feeling smug but until then I’ll keep being a cheap arse and pining my hopes on Cthulhu.


I ain’t dead……….yet

Been a while, a long while actually. there is a reason and some day soon I may even share it but in the mean time life carries on. Autism is still our faithful friend. The great autistic one is now 8 and 1/2 and still basically the same. We brought our first car some almost 4 months ago and we’ve racked the the mileage or as we don’t say in this country the kilometerage driving here, there and every freakin where.

For reason I choose not to divulge yet we had to take a long trip recently. Now where I live in little bitty ole N.Z. we are a 2 island nation. And by that I mean while yes there are other islands dotted around the place they appear to be inhabited by strange people with not enough teeth and a unhealthy interest in hemp clothing and the native wildlife so “we” like to pretend there are only 2 islands. As we’re such creative folk here we have really stretched the ole noggins and called them the North Island and the…………….wait for it………………….South Island. Pretty impressive huh.

SOOOOOOOOO anyway a couple of months ago we had to travel from North Island(where we live) to South Island(where we used to live). We drove I don’t know why, I guess we’re just sadists like that. Anyway it’s a reasonably decent drive it takes about 12 hours in total and 3 and a half of them are on a boat.

yep a boat. Autism on a boat. It was ………….interesting. Flapping on a boat takes a skill set little dude sorted in fairly rapid fashion

The Cook straight is reported to be one of the rougher ferry crossing in the world. Now I can’t say for certain if that the case and don’t see the need to test the theroy.

The trip was great bouncy in an up and down rough water kinda way. Flapping while spinning while boat is rocking, little dude spun right into the boat wall??? Anyway is was metal there was an impressive boing!! ANd he just shook himself and carried on spinning.

Ultimate dadda and I found our selves saying such gems as “no, no licking the boat” yummmmmmmmmm salty goodness. “no no looking under the doors” we had the good sense to hire a privet cabin for the journey and little dude discovered there were gaps under all the doors. “no,we don’t sniff  him” in the car deck little dude took a fancy to the dock worker that was directing passengers to their cars.

While we were away we stayed with little dudes grandparents that haven’t really seen him in years. They were impressed. And awesome.

The reason we were away wasn’t pleasant but the actual travelling made it better.

One day we might even do it again for the right reasons.


No respite, no return

Ask anyone today if it is a ‘good’ thing that such things as mental institutes no longer exist  Closed hospital wards and childrens’ homes are now a part of our collective past.

Ask anyone and they’ll say it “progress” and those places were ‘dehumanizing” and “cruel”

In today’s world community care rules the way, we are “supported” at home to care for our relatives with special needs. When they turn into adults they can if they’re “lucky” enter into group homes.

But do yourself a favour and don’t ask me. Not today.

Today my son has screamed and screamed and screamed.

He is on the highest does allowable of the medication to prevent this behaviour and he’s still screaming

He has been screaming non stop for 6 hours. He has violently lashed out. He has headbutted me pulled my hair out by the roots, gouged at my face and eyes, jammed his thumb up under the bone of my eye socket. He has smacked his head into a wall breaking more tiles in the bathroom. He has slapped and smacked his dadda.

He shows no sign of stopping.

I don’t know why he’s screaming. He started out of the blue when we were in the car.

6 hours of screaming.

And I can’t get him to stop.

And there is no-one who can help us. There is no safe place for him or us to go. There is no person we can call to come and help. There is no agency for us to turn to. There is no such thing as emergency care. I can’t even call the good folks charged with child protection in this country.

Instead we sit trapped in our home, utterly powerless waiting for this child to stop screaming.

So don’t tell me we live in an “enlightened” world.

Don’t you dare try and tell me that today is a good day to live in this world of “progress” and “enrichment” and “community based care”

Just don’t.

Rules of engagement.

How can I understand the rules if I don’t know the game he’s playing.

You hear all the time about autistic kids and how they are “resistant to change” and they like “order and routine”. Here’s how that translates in real life.

#1 When out and about in town staff must go to shops in order. There can be no deviation in the order. Any changes must be approved by management first. (Management will not approve)

#2 Upon entering the mall staff must proceed immediately to the food court for chips. 

#3 When entering any store on the approved list staff are not permitted to browse in any section other than the preschool toy isle.

#4 Sandals and shoes must be removed while sitting on the doorstep. NOT the front step. NOT the hallway. NOT the lawn. NOT the porch. The DOORSTEP ONLY.

#5 Do not presume management will be liable for any messes incurred herein and forthwith. Staff must not approach about any mess inquiries. Up to and including those of a “downstairs” nature.

#6 Staff are not permitted to eat any non-prohibited food without first offering a tithe to management  If this results in the loss of the entire slice of cake, sandwich, glass of orange juice etc etc management will not be open to negotiation.

#7 The order is pajamas  THEN a lap of the hallway, THEN teeth, THEN a lap of the hallway, THEN goodnight to mumma. Know the order, live the order or else….

#8 It is NOT permissible to enter the supermarket without a plan of purchase that includes either a cookie OR an ice cream, Both is preferred. 

#9 Management can not be expected to operate any previous set routines without prior and express directions from staff at all times, including but not limited to opening doors, turning up the iPad, removing socks, touching books and restarting dvds.

*sigh* “resistant to change”