Category Archives: Opinion

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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The agony of arrogance

We humans are a funny bunch of organisms. We think that because we can control these digits on the end of our hands and make them create words, it imbues us with some kind of special ability. 

But it doesn’t you know. it makes us gigantic asshats.

Now I know a little about a lot of things. I like to think I’m smart, intelligent, well read hell even ‘educated’ whatever that means. It’s that whole pride thing. I think being clever makes me special, unique, better than others. But a lot of us humans have that mind set. We need to be some thing praiseworthy. something that other humans seek to emulate, or compete with or be in awe of.

So we seek to better ourselves to prove our worth to the world, we take up a sport or hobby and post photos and tell everyone just how good we really are. We pretend to be bashful about it, we fake humility when what we really want is adulation.

We find interesting things to read and then jump onto facebook and proudly proclaim “this is really interesting I see what they’re saying and have to agree because that’s exactly what I think too” 

We run others down and joyfully point out the flaws and faults in their thoughts their logic their interpretation hell even their spelling and grammar because it some how proves us just that bit better. Makes us stand out even more.

We become fanatical in pointing out loudly just how thoughtful and compassionate and kind we are. How “evolved” we’ve become because we choose certain words or refute certain ideals “oh those idiots that think…….poor stupid people…..I feel sooooo sorry for dumb people”

Some how, some where we’ve picked a theme for our lives and insist on proving just how much better we are than the next person by proving just what an ignorant dickhead they are.

What the fuck folks? seriously. Reading something and believing it to be true because 14 other people wrote something similar and every “knows they’re leading experts in their field” and “who would be dumb enough NOT to do their own research after all”

that’s the agony of arrogance.

My arrogance almost cost my son his life. I thought I had something to prove by being more intelligent than the next parent. I thought I had the ability to do my own research and make conclusions based on solid scientific fact because i decided I was smart enough to know better. I wasn’t. And it nearly killed my beautiful innocent son. 

The agony of arrogance is believing yourself better than anyone else you talk too because no one could ever possibly understand you like you do. 

Don’t be a dick.

You’re not that clever.No one is.

Don’t be me.

Learn to listen. You might just learn.


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!


Be funny – or else!

I was recently reading blog post from http://autismandoughtisms.wordpress.com about humour (or humor depending on what language version you’ve installed) and I decided to comment and as I started writing what I had to say I got really really pissed off.

The general sense of the blog post was one of apology and exclusiveness and shame, like it’s not correct to find fun in the world in case some one finds it offensive and I thought very angrily screw that! One of my all time favourite quotes is from Stephen Fry.

Who cares if some one is offended by what we have to say or how we say it. This is OUR world not theirs, we live here not them.

Autism is OUR culture, OUR history, OUR language why the hell should we play by everybody elses’ rules. We measure ourselves and our behaviour and our reactions to things by the standards of a world we don’t inhabit and I can’t understand why.

So why shouldn’t we be funny, why feel guilty for laughing at our kids, for making jokes, calling them names

Who decided that autism is a dark and lonely place full of setbacks and frustrations and heart break and stress so we must be serious.

I had to pause this blog post halfway through writing. Ultimate dadda needed to come home and vent. As I’ve said before he works midnight’s to 8am i n our city’s only hospital as an orderly and he has a pretty awful job to do. And it’s not just the muck and the mess – 18 patients in one night with food poisoning  and it’s not the death and carnage that is a fatal car accident. It’s the inhumanity, the young man in getting stitches because his girlfriend stabbed, he was looking forward to going home so they could have make up sex. It’s the adult son jamming his elderly mother in the front seat of the car with a broken hip and leg cause he won’t pay for the ambulance, it’s the mother that came to i.d. her daughter after she purposefully jump to her death saying “thought she’d get round to it, not my problem, do what you want with her” It’s the drug addicted parents punching each other while one holds the body of their tiny deformed baby.

Every day we are faced with the most horrific, the most awful things and people and events. We deal with all this and our beautiful son with all his issues We deal with the agony that our ex’s have caused us and cause our children. We deal with our own health issues. We deal with  lack of sleep, a lack of support and friendship, a lack of money, all this we cope with by laughing. By being inappropriate. By being rude and according to some offensive. By being crass. By being cynical and sarcastic.

And I’ll be damned if I am going to feel guilty about it.

I have far too many things to occupy my ind with other than worrying that something I might say may be taken out of context and used against me. I really honestly have learnt that I really honestly don’t care if I offend something while making a joke make my day slightly less shitty. And I think it’s a valuable skill most parents of disabled/special needs kids need to develop more than anyone else.

Learn to be less angry and more funny. So what? You’ve decided you got ripped off and didn’t get the kid you wanted and now the world has to pay? Sorry sweetheart, it’s a kid, not a tv, you can’t take it back to the store and get a refund. And while you’re sitting there being pissed off you’re missing out on some pretty awesome moments. And besides there’s plenty of time to be pissed off when your dead.

In other words, good sir and ladies. Fuck ’em if they can’t take a joke

Peace!


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!


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!