I ain’t dead……….yet

Been a while, a long while actually. there is a reason and some day soon I may even share it but in the mean time life carries on. Autism is still our faithful friend. The great autistic one is now 8 and 1/2 and still basically the same. We brought our first car some almost 4 months ago and we’ve racked the the mileage or as we don’t say in this country the kilometerage driving here, there and every freakin where.

For reason I choose not to divulge yet we had to take a long trip recently. Now where I live in little bitty ole N.Z. we are a 2 island nation. And by that I mean while yes there are other islands dotted around the place they appear to be inhabited by strange people with not enough teeth and a unhealthy interest in hemp clothing and the native wildlife so “we” like to pretend there are only 2 islands. As we’re such creative folk here we have really stretched the ole noggins and called them the North Island and the…………….wait for it………………….South Island. Pretty impressive huh.

SOOOOOOOOO anyway a couple of months ago we had to travel from North Island(where we live) to South Island(where we used to live). We drove I don’t know why, I guess we’re just sadists like that. Anyway it’s a reasonably decent drive it takes about 12 hours in total and 3 and a half of them are on a boat.

yep a boat. Autism on a boat. It was ………….interesting. Flapping on a boat takes a skill set little dude sorted in fairly rapid fashion

The Cook straight is reported to be one of the rougher ferry crossing in the world. Now I can’t say for certain if that the case and don’t see the need to test the theroy.

The trip was great bouncy in an up and down rough water kinda way. Flapping while spinning while boat is rocking, little dude spun right into the boat wall??? Anyway is was metal there was an impressive boing!! ANd he just shook himself and carried on spinning.

Ultimate dadda and I found our selves saying such gems as “no, no licking the boat” yummmmmmmmmm salty goodness. “no no looking under the doors” we had the good sense to hire a privet cabin for the journey and little dude discovered there were gaps under all the doors. “no,we don’t sniff  him” in the car deck little dude took a fancy to the dock worker that was directing passengers to their cars.

While we were away we stayed with little dudes grandparents that haven’t really seen him in years. They were impressed. And awesome.

The reason we were away wasn’t pleasant but the actual travelling made it better.

One day we might even do it again for the right reasons.

Peace.


No respite, no return

Ask anyone today if it is a ‘good’ thing that such things as mental institutes no longer exist  Closed hospital wards and childrens’ homes are now a part of our collective past.

Ask anyone and they’ll say it “progress” and those places were ‘dehumanizing” and “cruel”

In today’s world community care rules the way, we are “supported” at home to care for our relatives with special needs. When they turn into adults they can if they’re “lucky” enter into group homes.

But do yourself a favour and don’t ask me. Not today.

Today my son has screamed and screamed and screamed.

He is on the highest does allowable of the medication to prevent this behaviour and he’s still screaming

He has been screaming non stop for 6 hours. He has violently lashed out. He has headbutted me pulled my hair out by the roots, gouged at my face and eyes, jammed his thumb up under the bone of my eye socket. He has smacked his head into a wall breaking more tiles in the bathroom. He has slapped and smacked his dadda.

He shows no sign of stopping.

I don’t know why he’s screaming. He started out of the blue when we were in the car.

6 hours of screaming.

And I can’t get him to stop.

And there is no-one who can help us. There is no safe place for him or us to go. There is no person we can call to come and help. There is no agency for us to turn to. There is no such thing as emergency care. I can’t even call the good folks charged with child protection in this country.

Instead we sit trapped in our home, utterly powerless waiting for this child to stop screaming.

So don’t tell me we live in an “enlightened” world.

Don’t you dare try and tell me that today is a good day to live in this world of “progress” and “enrichment” and “community based care”

Just don’t.


Rules of engagement.

How can I understand the rules if I don’t know the game he’s playing.

You hear all the time about autistic kids and how they are “resistant to change” and they like “order and routine”. Here’s how that translates in real life.

#1 When out and about in town staff must go to shops in order. There can be no deviation in the order. Any changes must be approved by management first. (Management will not approve)

#2 Upon entering the mall staff must proceed immediately to the food court for chips. 

#3 When entering any store on the approved list staff are not permitted to browse in any section other than the preschool toy isle.

#4 Sandals and shoes must be removed while sitting on the doorstep. NOT the front step. NOT the hallway. NOT the lawn. NOT the porch. The DOORSTEP ONLY.

#5 Do not presume management will be liable for any messes incurred herein and forthwith. Staff must not approach about any mess inquiries. Up to and including those of a “downstairs” nature.

#6 Staff are not permitted to eat any non-prohibited food without first offering a tithe to management  If this results in the loss of the entire slice of cake, sandwich, glass of orange juice etc etc management will not be open to negotiation.

#7 The order is pajamas  THEN a lap of the hallway, THEN teeth, THEN a lap of the hallway, THEN goodnight to mumma. Know the order, live the order or else….

#8 It is NOT permissible to enter the supermarket without a plan of purchase that includes either a cookie OR an ice cream, Both is preferred. 

#9 Management can not be expected to operate any previous set routines without prior and express directions from staff at all times, including but not limited to opening doors, turning up the iPad, removing socks, touching books and restarting dvds.

*sigh* “resistant to change”

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!