Monthly Archives: January 2013

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!


Hey! Quit being average will ya?

Had one of ‘those’ moments on Planet Autism. Sneaky lil dude went and acted all average on us.

Man, I hate it when he does that.

Firstly he’s acting all cute. Now I don’t mean he’s looking all cute and that’s not average. He’s always cute looking but honestly as much I as love the great autistic one there are times when his behaviour makes her  v  v  look like a kindergarten teacher on her first day.

                                                              

So he’s actually acting cute, kissing daddas nose and ears and eyes and lips and cheeks and hands and feet. So the kid is stalling going to bed. Ok that’s cute. But that’s not average.

So dadda is tolerant, but wanting the lil dude to get to bed, so after following the strict bedtime routine with no deviations, he’s standing in the hallway.

Ok little man that’s enough, time to get into bed, so come on, lets go bedtime.

………wait for it…….wait….for….it.

“okay okay”

Heh, that’s it that’s all it takes to be average around here and blow our minds.

Two tiny syllables. 

Bell rings lights flash, unicorns frolics and angels drop the bass.

But before you melt into a gigantic puddle of goo with all the cuteness, don’t worry

As soon as that door closed his invisible nanny moved in to babysit

I think they’re learning nursery rhymes in there.

Peace.


My kid, the human car alarm.

I am constantly asked by all and sundry what The Great Autistic Ones special ability is.

Whut??? Oh right, ’cause ya know everyone has hollywood autism.

Hollywood autism is type where the (male) is usally highly verbal, and displays a freakish understanding of maths and has almost always lost one or both parents. Aka the common and annoying mis-conception that every person that has autism is some “special’ talent/savant ability.

SO I am asked almost every time without fail, what my sons “special” ability is.

Errrrrr “he can squeal like a freakin car alarm.”

What do you mean that is not  talent???

No he doesn’t have the ability to count cards or solve quantum mechanics equations in his head. Well yes I could take him to Vegas to cheat at poker but I have a feeling the plane ride would wipe out any winnings in compensation for hearing damage. And we’d never get any further than the slot machines, with all their spinning and flashing lights.

Can he listen to a song just once and play it by ear?

Well no, but he can imitate door bells, shop chimes, fire engine sirens and the microwave when it beeps.

Impressed yet? No errr what else can hollywood autistics do?

Oh that’s right don’t touch them and they have a photographic memory.

Well the touching bit is wrong, my guy loves a good hug, squeeze, tickle, headbutt, he will hold hands which is nice, he will blow his nose on your hand which is less nice, but still better than when he licks it off again.

The photographic memory is bang on the money though, but he’s yet to use his powers for good. However he can spell, universal, paramount, 20th century fox, oblivion and for some reason horse.

Hollywood autistics don’t like change either, they tend to hum and some of them even rock.

Total fallacy right there. My guy can handle change just fine, as long as you warn him and change it right back as soon as you’re finished.

I would really like to see a blockbuster movie about a “proper” autistic person .

But I have a feeling that 2 hours of humming,  flapping, spinning, licking windows and sounding like a car alarm every 15 minutes just wouldn’t sit right with the audience.

They’d constantly be bolting outside to check the parking lot.

Peace


Screwing up is a life saving skill.

On social networks sites and in life I know all sorts of people from all places in life and many of them are very very intelligent people. Now I’m fairly bright for my own part in it. And reasonably well read too, but many of these folks to whom I refer make me look like I’ve just mastered the art of colouring in the lines.

I like these folks, I love being challenged by their intellect, their way of analysing things. Bouncing ideas of them and having those glorious geeky conversations.

But the one thing that baffles? upsets? confuses? worries me is the way many of them over think parenting.

Now I get it’s an each to their own scenario and all that jazz. I welcome it for without diverse parenting we would not have diverse people, but seriously guys what’s the harm in screwing up when it comes to your kids?

Parenting without mistakes could led to dangerous waters. Explaining, analysing, exploring your feeling, critiquing statements made by your own kids. If labelling every moment of their carefully constructed 2 hour long play time with organically painted,  sustainably harvested, locally crafted, free form, non-gender-biased blocks is fine for you and your ideals but remember we’re only given our children for a few years before we have to turn them loose in this world

I think the best and most valuable skill you can have as a parent is. Say No every once and and while, and when you do say No? Don’t explain it. Simply “I am your parent and I said NO”. It is a life saving tool. By all means don’t come off as a total overlord. I know those parents too and their kids are emotionally battered into compliance and are almost non-functional.

Teach your children the art of compromise and negotiations  these are vital tools to have as an adult. But remember when you are parenting your child (or someone else’s for that matter) that you are parenting them for THEIR lifetime, not yours.

There are some skills people must have and one of them must be the ability to do as you are told. For no other reason than you are told to do it.

You hate to think about the worst case scenario but what happens when you’re not there and your kid is in mortal danger and they’ve been given a set of instructions to follow to save their life. Do you really want a child capable of doing exactly what they are told to do, or is it more important that they analyse the situation, be given time to engage in discussions with their rescuers, negotiate ways in which they can have control of the situation and be allowed to make decisions based on their ability to be reasoned with? And if you can’t ever consider that it will ever happen to you and yours, I invite to spend a weekend volunteering at your local hospitals Emergency department. Because you will see families just like yours in situations they never thought would happen to them.

It’s more than just teaching our children to ask a policeman for help or listen to a fireman if he’s trying to help you. It’s about holding still so a doctor can take bloods, following the ambulance drivers finger while he checks for concussion, it’s explaining to the stranger driving past what happened. It’s about walking away quickly from the area without running.

These are things we shouldn’t have to think about but need too. Here in New Zealand we like to think we’re immune from Sandy Hook or the Aurora theatre shootings and that may be but we are NOT immune, to fires and floods and earthquakes and car crashes and mentally unstable people with weapons.

It’s ok if we’re not perfect as parents it arms our children well for life as adults. They will be able to cope with imperfect people, disappointments, demands from bosses and arguments with spouses without the need for therapists and anti-depressives

I’m not educated intellectual but end of the day I want my kid to live so I’m am going teach (and have taught) them the following skills. And I refused to consider the long term negative impacts on how my statements am possibly harm my growing child and place unacceptable levels of mental pressure on them. Because I have a feeling if you balance everything out your kids are going to grow just fine.

On occasion you will do as you are told because you are told too.

There is a time and place to negotiate.

You do not always have to have a explanation.

I do not always have to defend my decisions to you.

You may disappoint me and I may disappoint you from time to time. It is not the end of the world.

It’s ok to screw up and admit it to you kids.

No matter how you you might hate me I will never ever stop loving you.

Peace.


Anatomy of a Stim

If you’re a non autistic involved person you may not know about stims, so I shall take it upon myself to explain.

Stim, stimmy or stimming. The word has most likely been derived from stimulating(get your mind out of the gutter!) and it describes the often rapid, repetitive gestures autistic people demonstrate when they have a emotional reaction to something. It becomes an emotional release for them

Some of those professionals that work with autistic folks dislike the word stim and all it’s variations however it’s widely know used and accepted by most friends and family.

The action of stimming is used as one of the many diagnostic criteria for assessing someone as having autism but not all of those that have ‘other’ spectrum disorders stim.

Some hum, clap, spin, finger twirl, hand flap, scrabble at their face, stomp, yell, tiptoe, rock, blink, rub or shuffle their feet, twirl their hair, poke out their tongues. Every type of body movement possible

My lads’ stims are whole body experiences and they are quite a thing to behold. If sitting the feet drum rapidly on the floor, his whole body rocks back and forth, he claps and also slaps his chest and head and often flaps his arms at the same time.

If standing, rocking back and forth, running, spinning in a circle, slapping head, chest, legs, hips, he’s usually yelling but not words just a loud hummm or heeeee or arrrrrrrrr noise.

Sometimes if it’s a quite stim there might just be  quite wee taps to the chest or head, and some low humming.

 

My guy has happy stims, angry stims, yelly stims, hummy stims, quite stims, pensive stims, curious and confused stims. And we’ve become so tuned to them over the years we can read his mood by them.

I love my sons stims. I have never ever had a problem with his stimming or the thought of any other person stimming But frequently they’re seen by ‘others’ in the autistic universe as “problem behaviours in need of correcting” including parents, siblings, teachers, doctors and therapists. And that is a devestating thought.

That so called “professionals” could take a persons coping mechanisms and emotional releases and denying them and labelling them as wrong, defective, inappropriate, or in need of correcting.

For shame! Would you deny some one the right to cry at weddings and funerals? To laugh at a joke, to jump in fright or shock? No? You wouldn’t deny it?

Right, well then you have no right to prevent others from their emotions. So keep your emotions to yourself and never express them or learn to accept that stimming is a necessary tool for survival when you are autistic or raising an autistic child. 

Today we brought the G.A.O. a large lava lamp. He loves it, it’s his new best thing ever! So I took a series of photos as he showed us his joy.

Image Image Image Image Image Image

Peace.

 

 


The greatest inventions of never

I’ve been thinking today, and since starting this blog I’ve felt the need to share some of the things that occupy my brain when it’s on standby mode. So today askewedviewed is proud to bring you.

The best things for autism that have never been invented!

1) Battery operated microwave. For popping those little buttery golden kernels of joy on the flap, nothing could beat a battery operated microwave. You could just keep it in the boot of the car and when the need arises volia. 2 minutes and 51 seconds later. A happy flappy chappy.

Ok so it turns out they’ve invented them already but I want a more a awesomer one.

2)Folding trampoline. Some kids rock, others swing, many bounce. My lads is a bouncer. He has the big one outside. A 14 footer. And in his bedroom your average wee re-bounder. But a fold up tramp would be awesome! If we wanted to get a social life and it didn’t agree with the young fella we could just get where we’re going unfold the tramp and there ya have it.

3)Pecker guard. ‘Nuff said really. I only have experience dealing with boys so I don’t know how useful it would be for girls. I’m picturing something like those cones of shame they use for dogs only upside down and fastened round the waist. Reaching to about knee height it would make it a lot harder to whip it out standing in the supermarket queue

Applied correctly, the cone of shame could be useful in preventing. U.P.E.’s (unexpected penis encounters)

4)Self squeezing helmets. My lad is a deep pressure guy. Particularly around the head. But when we don that in public we get similar reactions to U.P.E’s with the adage of folks wanting to call the child protection agencies. So a self squeezing helmet. Like a python but….well a helmet.

Medium

They so need these in every restaurant!

5) A sticky suit. What I have in mind here is kinda like those human fly suits you see in movies and some of the worlds more “colourful drinking institutes” but not velcro. Like if you’ve ever wrapped a cat in double sided sticky tape and thrown at a carpeted wall(not that I’ve ever done that of course) but you get the gist of it. So you could go out to a restaurant or some place and stick the kid to the wall and he’d be happy as, stimming and flapping and things and you could enjoy your meal in peace.

6)A mute button……that actually worked

Shhhhhhh!

I should add at this point, that when “they” do get around to inventing these things it will be perfectly normal and acceptable to have them and use them. Like those old skool calculator watches from the ’80’s. NOT everyone has one but it’s so totally not weird to walk into a McDonalds and see 2 or 3 kids stuck to the wall. Not like when I do it these days and I get all those really funny looks. 

Peace!


Finding our Way

Planet Autism, where the scenery changes but the ride in stays the same.

I was reading through some older blog entries today and I noticed that to my eye, there’s a whole lot of bitching and moaning and not much joy.

So the real story of us is, we have a lot of fun, there’s lots of laughter in the house, we enjoy life and it’s not all about autism round here.

So dears readers how about a little padding in our fluff piece  called living, some scenery if you like.

So you know we’re married, Ultimate Dadda and I, but what you won’t know we’ve been together almost 10 years and married almost 6. We’re both on second marriages, we could tell you stories about our ex’s but you won’t believe us as it seems impossible that 2 people could  have such poor judgement and yet be successful the second time round, or as we like to say “one for practice  one for keeps”. We got hitched on April fools day in our backyard, we were all barefoot in tidy casual gear. Some of our kids stood up with us, one buggered off to play on the tramp, one was inside with a friend and the great autistic one who at that time was hairy and little was stimming on the tv to bear in the big blue house. We were surrounded by friends but not by family.

The Great Autistic One is our only kid together, I have 4 boys from others, U.D. has one girl from another and then there’s Mr Boo aka the Great Autistic One.

Ultimate Dadda works midnight to 8am as an orderly in our hospitals Emergency department. He works weekends and through the week and surprisingly he loves his job. He gave up working in a upper management job with pay check to match to schlep around after crazy, drunks and the plain old injured and ill. He has a way with the very young, and the autistic to the point that his workmates call him the baby guy and the autism guy and he can often be seen strolling the halls doing his job with a baby on his shoulder except in the morgue (we do have SOME standards).

Our kids are all colourful characters and we adore each and every one of them, there’s not a single beige wallflower among them. Our kids have a solid grounding in sci-fi, fantasy , gaming and with one exception heavy metal music (she’s a work in progress  😉 )and general geeking, not to mention they all get A+’s in sarcasm and taking the piss. Our favourite family time is spent either fishing or sitting around playing Dungeons and Dragons.

Did I mention U.D and I are HUGE geeks, war gaming, star wars, star trek, lord of the rings, the big bang theory, dungeons and dragons, comic books, super heros, zombies, game of thrones,  the works! With the exception of Dr Who, if you can expect to see it at comic con we love it. We also love being outside mucking around in the garden, fishing, walking just being outside. We like our heavy metal, hard rock and punk. At 36 I finally shaved off my multi coloured mohawk, not because I outgrew it but because the G.A.O used to hang off and scale me like a mountain climber to get a better angle on his headbutts.

The Great Autistic One is a pretty funny wee guy, when he’s not melting down, or winding up. And he frequently has himself and us in fits of laughter. He’s often sweet, adorable and delightfully cuddly more so with U.D than me but I get that and only bothers me sometimes. He has his up and downs as do we all, life is better with him, so better with his autism I guess. I often wonder who he would be if he wasn’t autistic, but I tend not to dwell there. I love him for who he is, not who I wish he was.

So my followers, take heart or BRAINSSSSSSSSSS! if you prefer, life is not always doom and gloom here on Planet Autism, we find our way. It’s  not typical, average or boring, even by autistic standards but it works for us.

Peace.