Tag Archives: spectrum disorders

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.

 

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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


Resistance is futile

So the great autistic one has been attending a special needs gym class for the past 6 months. Every Monday afternoon during school terms(10 weeks in a row 2 weeks off 6 weeks off for summer holidays at Christmas time) we trooped off to our local gym and had a blast!

It has been funded by local community groups and there was no cost to parents.

There seemed to be a variety of kids attending aged from 5 through to 15??? maybe and about a dozen kids. And at first glance they appear  to have different issues but as we well know(NOW) is apparently is not polite to come up to some one and say “what’s your kids problem ?”

Today we showed up for his first session of the term and we’re handed a notice informing us that The Autism Gym class is now funded by Autism NZ and if we want to continue enjoying gym we must become members of Autism NZ and it’s only for children aged up to 11. – REALLY????

<insert large amount of expletives here>

First of all at what point did his special needs gym session become an ‘autism only’ gym session???? Did we miss a memo? And it’s funny how last year when the old volunteer was running it her 15/16? year old son was the oldest kid there and now there is a very different age limit????  I smell something and it ain’t wonderboys’ pull up

Secondly WHUT???? In order to continue using a service that has suddenly become exclusive we have to become members of the club.

It’s not the money mind, they want I think $30 a year, a small pitence. No no it’s the utter gall of forcing us to join an organization that we are not interested in in the slightest just to get benefit from something that had nothing to do with them until this week.

Bloody horrid shock to us. We looked into Autism NZ when we first got diagnosed 6 1/2 years ago and again when we move from one part of the country to the other 4 1/2 years ago.

Unimpressed was the general sentiment. We were offered a place in a class that as far as we could understand was geared to “how to love your child even though he/she is autistic” Both times there was considerable confusion and dismay from those that offered when we explain that it was completely unnecessary  unwarranted and some what offensive that they assumed we needed help loving our child.

We inquired as too what else the organisation could do for us. The response was some vague mumbling about seminars and guest speakers and an enthusiastic invitation to use their “extensive” library. And to once again point us in the direction of their “early bird(how to love your child) class”

We were put in touch with  woman that supposedly wanted to set up New Zealand’s first autism assistance dog training program. We met with her and her “very high functioning” teenage son. Over the course of 2 weeks worth of dialogue the conversations went from the woman having this “specially hand picked” young Labrador pup which she would train with input from us over the space of several months and then hand over with training from her to it was a “half-breed-pit-bull-cross-and-if-we-wanted-an- advice-we-could-always-drop-her-a-line-it’s-almost-housebroken-how-long-till-you-can-take-it-off-my-hands?” And this women was seeking endorsement from Autism NZ and receiving special notice in the newsletters for her “incredible contributions”.

WHUT????

Recent scanning of the online website has yet to revel to me any thing tangible that the organisation offers. Again vague mention of “seminars and visiting experts in the field  Some “what is autism” for dummies posters links to pages to download information about their 3 courses offered!!!!(you must be a member to see the downloads) a link to an online “am I autistic test”-by the way I took the test. I’m not autistic I just hate people. And reminders on several pages that it’s $30 a year for a family to join.

I almost want to take the “is it a cult test?” but I’m afraid of the answer.

We were handed the form to enroll with the group today at the end of gym “Please note all family members and what their diagnosis is – classic/aspergers/pdd/other”

WHUT???

Hell I won’t answer the government census questions and I have to by law and you wanna know each and evey family member and what their problem is” I always knew autistic folk had poor social skills. I didn’t realize it was an entrance requirement to the club.

Apparently calling yourself an asshole just doesn’t cut it anymore.

The Great Autistic One starts swimming this week. No entrance requirements beyond the $1.50 pool fee. And I’m pretty sure the lifeguards aren’t cult members. The penguin mascot I’m not too sure about though.

Peace!


autism v. 2.0??? system error invalid command.

I was just scrolling through some different blogs on autism trying to find others out there using the same software we have installed and I think I must be doing something wrong cause none of them have the same programming errors as we do.

I think I need to do a re-install cause all these other folks have ones that can follow instructions, or communicate  or express appropriate behaviours.

Begs the question what the hell is autism, cause if they’re calling their kids autistic then what the frack is mine???

Example: from an apprently “autistic” 9 year old boy comes the following dialogue “One morning, on the way to taking Teagan to school, my husband and I were having a conversation. I don’t remember what it was about, but I do know that it wasn’t about anything that came out of Teagan’s mouth. He says, “I’m not old enough to choose to make out or not to make out.” I said, “WHAT?” And he repeats it. Then I ask him, “What is making out?” And he says, “When you date.” So, I say, “Oh, well, it’s good you aren’t old enough to make out then.” And then he says, “I want to make out with Skylar.” My husband and I nearly died of a heart attack. And then Teagan says, “We’re going to go to a restaurant.” So, not only is he interested in dating this Skylar, but he also has it all planned out. He is going to go on an internet dating site, for what he presumably believes is to teach him how to be nice to girls, then he is going to take her to a restaurant, then make out with her. Heaven help us!”

Seriously???? you’re calling your kid autistic and he just came up with that???

Lady what planet you from? I’m from planet autism and on my planet autistic boys don’t have conversations about appropriate dating. On my planet boys will occasionally yell out something that may in fact be “DUCK QUACK QUACK”. At least I hope that’s what he was trying to say. We also have “conversations” like this. “Do you need to pee?” “Nooooooooo” “____ do you need to go toilet have a pee?” “NOOOOOOOOOOO NO peeee” “Do you want to try have a pee? No not in the hallway” -cue screaming or as he puts it ‘kweeeeming” As for dating plans are you friggin kidding?? Hell I’m just grateful he no longers launches himself down other females cleavages”

Or how about this wee gem from another ‘autism mom” “I am completely out-of-the-loop on ALL personal care and hygiene issues and he has done a tremendous job!  He is the least smelly teenage boy I know, and very receptive to any changes or new introduction to his routine in this area.  So thankful for this!!  He also has no need for my assistance with any of his household chores.  He empties the dishwasher, carries in and puts away all the groceries, puts his dirty clothes in the laundry, takes out the trash, and starting this spring, will be mowing the lawn.  He will do any work you ask, as long as he knows what time you expect him to start work and for how long.  He is a human timer and has an expiration buzzer for sure – but will work hard when he understands the expectation and task”

Seriously???? you’re calling your kid autistic and your bitching he can only do things after very specific instructions???

Lady what planet you from? I’m from planet autism and on my planet autistic boys don’t follow instructions beyond “try saying that again” Hell I’m thrilled all to bits that my “normal” teenage boy uses soap and sometime follows instructions let alone the autistic one. I figure I’ll still be washing all his bits and pieces when he’s 20, christ can you imagine having to shave your own sons face when he’s hypersenstive to touch, sound and he’s hyperactive to boot.

How about this “mom” and her 2!!! autistic boys “Hey, kid. I wanna tell you that I’m really proud of the way you handled the bus situation this morning. I know it’s hard for you to be late and I’m happy that you didn’t worry too much about the bus. Like I told you before, you’ll get to school no matter what, because if the bus can’t take you, I will. You can count on that. Hey…I have an idea!””What?””Well, since you did such a good job this morning by being flexible and not feeling upset about the bus, I was thinking about a possible surprise. But, if we do the surprise, it means you’re going to be another 5 minutes late to school. You can choose what you want to do. If you want to go straight to school, then that’s what we’ll do. If you’re okay being a few more minutes later than we already are, then I’ll tell you my idea.”He paused for a moment, assessing his options. “I’ll be okay if we are 5 more minutes late. What’s the surprise?”How about we get some hot chocolate on the way to school because you did such a good job?”I knew it!”Yeah, I figured you did, kiddo.”

Seriously??? You’re calling your kids autistic and they can verbalize a thought process, make a decision and assume they are right?

Lady what planet you from? I’m from planet autism and on my planet boys with autism don’t talk, cope with change AT ALL, verbalize thought process OR make decision beyond pointing which dvd is on their shelf. Oh and also? They don’t drink hot chocolate

These “autism moms” need to get a grip. I ain’t gonna take no bitching form any of them. I don’t claim to have exclusive rights to call my kid autistic. I just don’t think they should either. Clearly their o.s. got installed by a techie with half a clue. Their programming might be a slow and require some pretty precise inputting from the user but hell honeys at least yours don’t crash halfway through a download.

I think my kid musta been programmed by a non-english speaking hyperactive crack addict with multiple personalities and a real short attention span.

Peace!