Tag Archives: meltdowns

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.

Peace.

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The road to risperidone.

We are entering a new phase in life here on Planet Autism with the Great Autistic One, aka Boo.

We’ve being going through hell for weeks with massive behavioural changes. Our little dude has been angry, violent, and distant. His days were filled with rages so violent he would hurt himself several times a day smashing his head into doors and walls and us and himself. He had daily autism meltdowns. Those “tantrums” that came from nowhere and lasted for hours, hurting himself, hurting us, screaming, growling, thrashing, squealing. He wouldn’t eat, couldn’t sleep. He’d wake in the middle of the night and scream for food or drinks or attention or boredom. And they were terrifying blood curdling screams of total agony. They kept the whole house awake, his brother and sister were tired and frightened. I was on my own for most of it as Ultimate Dadda had to work, but even then we had a couple of nights when dadda couldn’t go to work because the rages were too bad.

We’d been dealing for weeks and weeks. Trying so hard to reach him. Or keep him safe, but we just couldn’t.

So we pressed his paediatrician hard for an appointment and just 2 days ago we met with and talked about medicating.

We always knew meds were an option with our guy because he is so low functioning and so severe with his autism but we always held off. Simply because he didn’t need to be drugged. We have previously felt it was simply unnecessary. I had done my reading as any good parent should and decided that his meltdowns and anger didn’t warrant the possible side effects of any proposed “drug regime”.

So Friday as we’re sitting in “Dr Willy’s” office and I look over and my son as he’s arching his whole body and it’s completely rigid and his sweet wee face is covered in bruises from where he’s hit his face into the tiles in our bathroom and he’s clawing at his daddas arms trying to free himself to hit his head against the floor and I knew enough was enough.

So the great autistic one now takes a single .25ml dose of Risperidone once a day.

And the change has been astronomical. It’s only been 48 hours but they have been quite and peaceful and calm. The whole household has been able to sleep for several hours, last night the little dude even put himself to bed!

We’ve had no meltdowns, no rages, no screaming for hours. No hurting himself, no hurting us.

The road to risperidone is the hardest longest cruellest journey I’ve ever made since Boo came into my life. But I have learnt since my time here of Planet Autism and what I now know is there is no disabled community that I have ever heard of the fights itself more than those of us living under the spectrum.

WE are our own worst emeny, fighting each other, accusing, blaming, hating, dismissing, condemning  We all think we have the perfect answer, pro vaccinations, anti vaccinations, pro gf/cf anti gf cf, for meds, ABA, SLT, mainstreaming, cognitive, or anti everything.

It’s all bullshit and self destructive and it forgets ours kids.

Too long I paid attention, too long I distrusted myself and trusted in ‘the experts’, the “warrior moms”, the self invested.

I don’t care what causes autism, I don’t care what might cause autism. I care what will make my family work.

And what is working right now is chemicals. A potentially powerful anti-psychotic drug given in a minuscule dose. My son hates it! It tastes foul and I must force him to have it. I have to hold him down and squirt it into his mouth. It has side effects, and they don’t scare me. And I have no doubts at all that I am doing the very best for him.

We as parents and family and friends to autistic people need to read less and trust ourselves. We need to stop fighting, stop blaming, stop arguing, stop looking for answers that aren’t there and we need to start accepting. This. This is our lives and this is the lives of our children and we must, WE HAVE TOO find our peace in that and find what works for us and our children.

Peace!


The blind guides book of the meltdown minefeild

8 days into the New Year and we’re at 5 meltdowns and counting.

Jealous much???

To state navigating The Great Autistic Ones meltdowns are an adventure is like stating Gollum may be a little preoccupied with jewelry.

The key to to think small and move slowly, like bees and dogs, the great autistic one can smell fear. That and cake, he can also smell cake. Perhaps the key is to throw the cake and move swiftly in the opposite direction. Also throwing bags of popcorn could help, but you must be gentle  more of a lob and less of a throw.

Often one can sense an impending meltdown much like cows can sense Earthquakes. You could try their trick of lying down but honestly that just leaves you vulnerable to attack.I personally think protective clothing should be part of your diagnosis package, “here’s your piece of paper showing you all the names and numbers of organisations other parents of kids can call but not you because you lucked out with the “not a disability disability”, here is a prescription for sleeping tablets, have a free subscription to kooknews monthly and here’s your bear attack suit. Good luck, please don’t call us”

Bear attack suit, best used at nappy changing time, nap time, dinner time, and any time you want to safely engage with your kid

Seeking help for said meltdowns is also an exercise in futility, joke, only slightly less appealing than getting a tooth pulled via a rectal probe, a daunting task. I’ve lost count of the amount of times I’ve gone asking an EXPERT in autistic behaviors for assistance only to be asked “he’s doing what?, really? wow that’s weird. I don’t know what you can do about that HAHAHA(deep chuckling belly laugh) drink more coffee and hope it’s a phase” Smart ass freaking doctors. maybe I should break into his beemer and give the kid a can of coke and a packet of gummy bears. “really? he put what where? I don’t know what you can do about that hahaha”

Seriously though these meltdowns are getting to me, my kid is starting to make A-listers and their hollywood benders look like a quite night in with a cup of coco and a good book.

Short of drugging the wee poppet into submission where the side effects list looks like a game of russian roulette on a psych ward. The number one side effect seems to be “excessive weight gain”, also irritability aggressiveness and restlessness.

Whoopee. Just what I need a LARGER version of tiny tim on a hyper active ‘roid rage.

Possible side effects may include your child channeling this guy. Not to be taken on holidays

I’m not left with many options at this point. Suck it up, or drug him up.

Where’s the number for that bear suit guy.

Peace


A window into our world.

It’s two days since The great autistic ones birthday, and it’s been 48 hours of hell.

It’s all because of a book.

This book

Little man has been eyeballing this book for months in our local cheapie chainstore here in New Zealand. The place is called the warehouse and I think it’s over seas equivalent is possibly Wal-Mart.

The warehouse is notorious for selling crap goods at inflated prices but they are a market leader here and you can buy anything.

Anyway back to the book, little man really loved this book, everytime we went to the store he’d sit and play with it. On the afternoon of his birthday I grabbed my last $25 and went and brought this book. I quickly touched some of the buttons and they appeared to worked.

Off I trotted back home to deliver some birthday joy.

But some of the buttons didn’t work, it’ll be old batteries, we popped some old rechargeable batteries in, nope now it worked worse.

Fuck, I think. Little guy is fairly unhappy at this point but there is still one or two buttons that work so he’s not entirely unhappy but we can see a meltdown approaching.

Ok so back to the store to get some brand new batteries into the book and voila…………..

Nothing, book doesn’t work at all. Original shop batteries back in, nope nothing. A microsecond blip from one of the buttons and that’s it

Right ok we think back to the store and we’ll exchange it for one that works.

Dantes 8th circle of Hell

WRONG! They sold the last remaining book in the hour that we spent trying to get our one to work. We tried to swap the book for a similar one but sadly little man hates the new book.

Little man has been screaming ever since. He is inconsolable. And we live in a city with only one store so no chances of going to a different branch to see if they have it.

Check on-line. Nope sold out.

Try three different online book stores including Amazon. Nope

Finally found a copy of the damn book in England. But I did mention I had spent my LAST $25 on the book. So I’m ordering it tomorrow. And hoping to all that’s kind and decent in the world that it will work when it gets here

So a little boy waits, and while he waits, he screams, he cries, he can’t sleep, every little tiny frustration sets of massive hours long  tantrums, meltdowns and crying episodes.

Ice cream helped soothe the savage beast a couple of times, until we ran out. Now we’re back to screaming crying, sobbing and not understanding why we can’t have what isn’t here because a store sells broken things. Maybe just maybe I should take my broken thing into the store and ask them to fix it.

Ahhhh who am I kidding they won’t care. They got their $25. And we got pain, agony, heartbreak, and utter utter anguish.

So a family waits, with earplugs. And caffeine. And a packet of painkillers.

Peace.


the 12 days of an Autism Christmas

On the first day of Christmas my autistic one gave to me

A meltdown under the Christmas tree.

On the second day of Christmas my autistic one gave to me.

2 unwrapped presents and a meltdown under the Christmas tree

On the third day of Christmas my autistic one gave to me

3 puddles of wee, 2 unwrapped presents and a meltdown under the Christmas tree

On the forth day of Christmas my autistic one gave to me

4 hours of stimming, 3 puddles of wee, 2 unwrapped presents and a meltdown under the Christmas tree.

On the fifth day of Christmas my autistic one gave to me

5 screaming scenes, 4 hours stimming, 3 puddles of wee, 2 unwrapped presents and a meltdown under the Christmas tree.

On the sixth day of Christmas my autistic one gave to me

6 ornaments licked, 5 screaming scenes, 4 hours stimming, 3 puddles of wee, 2 unwrapped presents and a meltdown under the Christmas tree

On the seventh day of Christmas my autistic one gave to me

7 drooly things, 6 ornaments licked, 5 screaming scenes 4 hours stimming, 3 puddles of wee, 2 unwrapped presents and a meltdown under the Christmas tree

On the eighth day of Christmas my autistic one gave to me

8 Thomas repeats, 7 drooly things, 6 ornaments licked, 5 screaming scenes, 4 hours stimming, 3 puddles of wee, 2 unwrapped presents and a meltdown under the Christmas tree.

On the ninth day of Christmas my autistic one gave to me

9 poopy pull-ups, 8 Thomas repeats, 7 drooly things, 6 ornaments licked, 5 screaming scenes, 4 hours stimming, 3 puddles of wee, 2 unwrapped presents and a meltdown under the Christmas tree.

On the tenth day of Christmas my autistic one gave to me

10 minutes peace, 9 poopy pull ups, 8 Thomas repeats, 7 drooly things, 6 ornaments licked 5 screaming scenes, 4 hours stimming, 3 puddles of wee 2 unwrapped presents and a meltdown under the Christmas tree.

On the eleventh day of Christmas my autistic one gave to me

11 flying headbutts, 10 minutes peace, 9 poopy pull ups, 8 Thomas repeats, 7 drooly things, 6 ornaments licked, 5 screaming scenes, 4 hours stimming, 3 puddles of wee 2 unwrapped presents and a meltdown under the Christmas tree.

On the twelth day of Christmas my autistic one gave to me.

12 shots of whiskey, 11 flying headbutts, 10 minutes peace, 9 poopy pull ups 8 Thomas repeats, 7 drooly things, 6 ornaments licked, 5 screaming scenes, 4 hours stimming, 3 puddles of wee, 2 unwrapped presents and a meltdown under the Christmas tree

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