Tag Archives: Parenting

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.

Peace.


In defense of the casual ‘F-bomb”

It needs to be said here and now that this post contains the word fuck a lot. Just warning ya early in case y’all are easily offended. So brace yourselves now.

Little dude has a new word to add to his vocabulary.

Yup FUCK

He’s very good at pronouncing it. He can use it in context, appropriately and it is one of his high frequency words.

I’m very proud. In fact you could say………

As a matter of fcuk little dude just wandered into the lounge happy as  clam skipping and swinging his arms “ohhhhh fuck ohhhh fuck” goes his little happy song.

The other day we were at the library and we were waiting to check out our books. Mumma is talking all about the librarian behind the desk and how she helps people to find books. Little dude slipped off the stair he was standing on and let rip”aww fuck” and I just keep chatting away not missing a beat.

And we’re sitting on the new couches having a chat and from the bedroom ….. ‘thar he blows’  “fuck fuck duck quack” We pause, there’s an eyebrow twitch and…..”duck quack quack yeeeeeeeeeeee fuck”

Having a wee stim making a happy ooooooooooooooooh noise “fuckfuck”

He banged his elbow walking through his bedroom door “ow fuck”

So we can tell from our reactions or lack there of that Ultimate Dadda and I are fairly casual speaking lads and lasses. We’re the first to call a spade a bloody great digger. We draw the line at the kids using fuck, and we never utter the “c” word except in moments of extreme and provocation and punctuation  The mumbleteen gets fairly free use of damn, bugger, ass, shit but his favourite is reserved for “oh hell no!” circa Gabriel Iglesias The lass is allowed ‘dumbass’ So we’re liberal permissives with boundaries.

But the little dude is leaving us all in his fucking dust. So to speak.

And what are we doing about it? Not a fucking thing. But let me tell you why…….

Given that although he’s 8 with his lack of verbal skills and other such autism awesomness he is a perpetual 18month old so it is with all “toddlers” tell him not to do something and sure as shooting it’ll become his new favourite past time. react and it will give him sometging to feed off. Tell him no and he’s going to bellow it in all his glory.

Besides he’s a human, a person and he has rights. So surely on of his rights should be to swear. I’m down with that. As long as he’s not spelling it, or typing it into google I can always edit the fuck out of his schooling videos right?

Seriously though I worry anything I try to negate his awesome grasp of the word is just going to aggrevate the situation, so I’m hoping that like most of his words he’ll drop it soon enough through lack of reaction and we’ll move on until then it’s best to .

I have no idea.

Fucking peace yeah?


Who Are You??? Who am I???

In a previous non autism post here  I allowed those that read this a glimpse into our non autistic lives. But  I was quite clever and tricksy and didn’t give much away about myself…………<cue dramatic music>……that is until now.

I had a better than average day today and I thought why not give the people a glimpse of their hero. So for the interested here is a snapshot of

A Day In The Life of The Modern Stay At Home Mother to The Great Autistic One

It started quite The great autistic one woke up well for a change, mumbleteen had a day off school because it was athlectics at school and he’s not interested. Ultimate Dadda came home at his usual 8:30 reporting a busy but not unplesant night at work. I got the lawnmower cranking fairly early cause the day was due to be stinking hot. I needed to tinker a bit so I got to get greasy which I quite enjoy. I mow the lawns round here, ultimate dadda and son are violently allergic and mumbleteen has the attention span of a spaniel puppy on crack.  After the mandatory shower before human contact like some plague bearer T.G.A.O had a meltdown because I left the app store icon on the iPad before handing it over and had to delete it in front of him. SO an hour later once he’d finally stopped alarming the neighbours I got to kick ultimate dadda into bed and squeeze in a tiny bit of teaching T.G.A.O. He does correspondence at home and I love it.

Then there was some me time. Yay! I like me time so I sat down with my cross stitching and watched Coriolanus on the laptop. Excellent movie by the way you should check it out. Try this link. After some serious me time interrupted by mumbleteen a few times. It was afternoon. So some housework, some stalking of the chickens and another lovely fresh eggie from the mother and it was baking time. A lovely sticky gingerbread yum yum and there erupted T.G.A.O with some drama.

Ultimate dadda now awake as a result of Mt. Autism erupting in the next room….again. And now it evening time. So tag team parenting comes into play and I get to make mayonnaise with home grown eggs for the first time ever. Dinner for dadda and I a rousing game of chase the chickens round and round in circles to get them in their coop and then give up in disgust and now it’s time for the strict bedtime nightmare, war, drama, seige routine, kick Ultimate dadda back to bed for another couple of hours before work and chillaxing with some serious geek time and stitching…..

There ya have it a fairly good day for the Tinks aka me aka mumma aka crazedkiwimum.

What’s that? You’d like some photos? Ok sure have some photos.

This is what school work looks like round here

This is what school work looks like round here. Read part of why we choose to educate at home here. and here

Previous stitching for a current project. The charatchers are from a beloved set of New Zealand childrens books adored by the great autistic one. Read all about Hairy Maclary

Previous stitching for a current project. The characters are from a beloved set of New Zealand children’s books adored by the great autistic one. Read all about Hairy Maclary or watch and listen to it being read by a New Zealand accent 

Our girls. Mother Jayne and her 4 daughters Inara, Zoe, River and Kaylee. Some of you more awesome folk will recognize the tribute to the GREATEST TV PROGRAM EVER CREATED

Our girls. Mother Jayne and her 4 daughters Inara, Zoe, River and Kaylee. Some of you more awesome folk will recognize the tribute to the GREATEST TV PROGRAM EVER CREATED


Warning: Contains Excessive Nudity

Parental guilt crisis looming……….

The great autistic one spends many an hour in the raw as it were and I am starting to experience mild panic attack symptoms at the thought that while it’s might be cute to watch an 8 year old boy bounce on the tramp int rain as nature intended  the sight of a 28 year old doing it is only going to frighten the neighbours, confuse the dog and disturbed any door knockers prowling the neighbourhood. Although in hindsight this maybe an excellent tacit for warding off those pesky God bothers, if only there weren’t those annoying little public indecency laws I’d put the tramp on the front lawn.

Image

a strict holiday dress code was adhered too. He had the hat on.

Change happens at glacial speed round these parts and if we stand any chance of getting the lad to wear pants on a daily basis we’re going to have to get cracking (pun intended) fairly soon.

I personally don’t mind if he’s running round the place naked and short of sunburn and unfortunate bee stings there is very little harm for the young fella or his wee fella, it might be a wee bit cheeky but surely there no harm. A stroll through our family photos shows the great naked one frolicking his way through seasons and years with nary a stitch. At Christmas, Easter, inside, outside there is a blur of boy bits gracing the screen(there’s a reason I don’t scrapbook you know).

It’s not that he sheds his clothes you understand but rather he has a fantastic habit of wandering off mid task and being happily engaged in whatever takes his fancy. And often it’s his fancy he’s engaged with. So there is a lot of lax parenting on my behalf, it’s just he’s so…….happy and let’s face the lad is an expert at nude maneuvering he’s been at it since before he could even walk

Born to be free, free from the oppression of clothing!

Born to be free, free from the oppression of clothing!

Most folks coming over these days are fairly used to a skinny kid streaking down the hallway and either they’re really good friends or they really don’t give a damn. Either way apart from the neighbours getting a rather surprising view with their breakfast when we first moved in there are been very few complaints. oh wait there was that one time in the supermarket but hey it was only his pants it’s not like he totally stripped off right??? But I have that nagging sensation that if steps aren’t taken now the other kids may have social lives revolving around i.d.-ing their mates at the door as content may offend sensitive persons.

Note the sun smart addition of a t-shirt. That's cracking good parenting there

Note the sun smart addition of a t-shirt. That’s cracking good parenting there

So how does one train the un-trainable into wearing pants?

What’s the next step learning for that? Star charts perhaps.

A sign on the front door “It has been _____ days since we had an U.P.E. (unexpected penis encounter)

I’m not too fazed as his excessive naturist tendencies aren’t unaccompanied by inappropriate peeing but I know in my heart of hearts that one day in the not to distant future pants are going to be mandatory.

Sigh heartbreak comes so early these days. I shall have to steel my resolve and add “the constant wearing of pants at all times it is neccessary” to our ever growing list of essential life skills. I shall have exercise great care in how we word teaching the great autistic one about “appropriate” as we could stand another repeat of the ‘great hilarity of  ’08”

Great care must be taken in the wording of stated i.e.p. goals, lest confusing surronding "pants must be worn at all times" Autistic children are VERY literal

Great care must be taken in the wording of stated i.e.p. goals, lest confusion surrounding “pants must be worn at all times” Autistic children are VERY literal

Peace!


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!