Tag Archives: life

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.

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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.


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


We return you to your regularly scheduled programm

A break from blogging for a couple of weeks. I actually got to have a few days away from Planet Autism. I visited an old friend I haven’t really seen since B.D. (before diagnosis) and it made me ponder about things.

In our house we don’t really age. No that’s not right it’s hard to quantify the words I need here(it may have something to do with the young flappy gentleman in the next room squealing and demanding cheese).

I feel like the rest of the world around us is changing but we’re still chugging on at the same point we were 3 years ago, 5 years ago. Most of the people I consider true friends have kids, and we sit on the sidelines of their lives watching their kids, grow and change and become the people they will be as adults, but we’re stuck back here, watching baby Einstein dvds and learning to point and pee. I mentioned this briefly in another post you can read it here https://askewedviewed.wordpress.com/2012/12/06/its-the-little-things-apprently/

As a couple, ultimate dadda and I we have VERY few friendships, maybe only 4 or 5 singles or couples we would count as close friends(people we’d make an effort to socialize with) and another dozen or so folks we share aspects of our lives with. I sometimes feel like I’d like to be closer to folks, have a “pop around for a coffee” type of mate but then I quickly come to my senses and the sensation passes.

One of the reasons is self preservation  you see as their kids grow, mature and develop as adult humans so too to their parents. Their lives start shaping in different ways, they update their wardrobes, develop new hobbies and interests change the house around to take over the kids rooms, get work, change jobs. Basically they become different people. They start sharing joys about kids getting jobs, moving houses, having relationships.

And yet here we sit, still watching bear in the big blue house, still changing bottoms, holding toothbrushes, picking out clothes. We still count all the soft toys, have ice cream for breakfast and leave the house exactly as it is. And I don’t know how to keep sharing the same stories.

I don’t know how to answer when I’m asked “hows he doing” I don’t know how to not feel jealous. I don’t know how to not talk about autism.

So I worry that it’s makes me an annoying friend, a whiner, a drag, I worry that a friendship with me is one sided, boring and uninteresting cause there’s nothing new going on. So husband and I keep our distance from people, mainly because with most folks including a few we get on with we no longer understand their motivations. Perhaps we view them as selfish, not realizing that without autism we’d be like that too. I don’t know

But I do know that we are here doing the same things we did last year and the year before and the year before that, and if you come and check in with us in another 3 or 5 years we’ll be doing the same things. Watching the same dvds, playing with the same toys looking to make the same leaps forward. Sure the setting might change, perhaps we’ll move house, update the furniture, hell maybe even graduate to owning a car, but fundamentally we’ll still be parenting a toddler.

There is a great deal of peace to be found in that idea, so don’t get started on the sympathy. Sure we’ll miss out on some things with our guy, his first job, his first girlfriend, moving out. But here’s what you forget, no panicked phone calls in the middle of the night because he’s too drunk to get home safely, no worrying because the girlfriend skipped her period, no going out and getting a fight, no drugs, knowing that he’ll never make a dumb decision and wrap his car around a tree He doesn’t want the latest shoes, jeans, music, gadget, car, whatever.

So I’ll gladly trade those worries for toilet training, learning to use a spoon and watching the same 12 dvds for the rest of his life.

Except JoJo’s circus. I hate that friggin clown

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.