Monthly Archives: August 2012

Being Klingon. A spectrum disorder

Klingons. Autism. Autistic Klingons? Klingism? And what about William Shatner?

A strong pointing gesture indicates microwave popcorn is cooked

Klingons live their life by a very strict set of rules.

They often indulge in bizzare rituals

Klingism can often be identified in the very young

When it comes to loyalty they can get a little INTENSE!!!

When they speak their own language only the true die hard can understand them.

In order to speak their language one has to practice for years

Often unpredictably violent

Their ‘taste’ in food and entertainment makes most humans gag.

Social skills do not feature.

Years of intense study require to understand the human race.

A klingon may attempt to emulate emotions but it comes off a little ……….wooden.

Klingism comes with it’s own snazzy logo

And then there’s Shatner. Spock, Data, The Borg…………..

Damn the whole friggin show is one giant ABA therapists waiting room

Spectrum Trek. Has a certain ring to it.

So internets. What do you think???


Schroedinger’s cat has autism

That is to say autism is a paradox. It both is and isn’t.

Is and isn’t what??? A gift? A curse? A blessing? “Gods’ punishment? A reaction to a drug? A drug processing abnormality? A genetic mystery? An inheritable disorder? Defined by a list of symptoms? A undefinable disease?

In my world. Autism is a developmental delay disorder not caused by any one definable cause. It has rendered my 7 year old trapped in a world I don’t understand, unable to process information in a standard form, unable to communicate, unable to undertake basic self care tasks. He is unaware of potential risks and has no ability to save himself.

But according to guidelines he is not “disabled, retarded or handicapped” He does not have intellectual impairment. He may or may not have cognitive reasoning, but he cannot be tested as he lacks the ability to follow directions.

So what the hell is he?????

He’s sure as hell not a cat in a box.

Besides everybody knows cats aren’t autistic.

They’re obsessive compulsive narcissists

The most comfortable label is appently ‘Special Needs”

What the hell does that mean????

All this blather about, “unique, special, awesome, miracle, precious, ‘Gods’ gift, an angel, perfect”. Yes ok lovely. I get it you really love your kid/s. Fantastic. And I mean that with all sincerity. too many humans in this world can’t stand their kids or beat them for not being perfect.

But lets get real here shall we. Why does just having autism make your kid any of those things? Do neurotypical kids achieve a place of adulation for merely breathing. Because lets face facts these labels that we attached to children with autism are doing just that.

Now don’t get me wrong. My kid rocks! THEY ALL DO. My 18 year old that’s proud of the fact he’s a gamer freak with an obsession for Mario. My 16 year old, the funniest sweetest metal head/gothboy I know. My 13 and 12 year olds whom I haven’t seen in 4 years but know I’ve never gone a day without thinking of them and missing them every moment. My most precious girl 10 years old, born of my heart and not my body and stuck living with a biological mother that treats her as an income but still laughs and smiles through the pain and hunger.

These guys are no more or less than their autistic brother somehow the paradox of life repeats a message that they ARE NOT special because they ARE NOT autistic.

But they all need the same thing. A mum and dad (or any variation thereof) that love them without pause, conditions, limits or definitions. Just love

What’s special about that?

If we are honest autism is a many faced beast. A label with no description except special

Here are my words for autism. Feel free to add your own

Annoying, hard, rewarding, a curse, a blessing, painful, humiliating, awe, confusion, joy, anger, love, hated, funny, frightening, stupid, breathtaking, tiring, exhausting, uplifting, messy, noisy, crazy, frustrating, silly, fun, embarrassing, isolating, rewarding, hurtful, prideful.

If I didn’t know any better I would think I was describing raising a child. Not raising an autistic child.

The paradox. I write this post because I have a child that I love without pause, conditions, limits or definitions

With Autism.

What’s special about that?


Curses of the i.e.p. achievments

I.E.P. those three little letters we love to hate. Individual Education Program. aka Twice a year lets all have a collective group hug and be friends.

No. Come near me and I will poke you.

Twice a year let’s sit and reflect on what has and hasn’t been achieved and set some news goals. Whilst trying very hard not to high five anyone in the face with a chair

Urgh. Sometimes useful. “Will learn to stand in a line and wait with other children” – Define line? I never specified a straight line. So if he’s not running off down the road with no pants do we count that as a win??? You bet your ass we do.

Sometimes you think it’s useful only to find out “goals for autistic children – better in theory”

Last year the great autisitic one had a bright wee S.N. teacher full of hopes and dreams.

All enthusiastic and keen with a ton of get up and go. So it got up and left with her….last year. I wonder if I should read into that?

Before she left Little Miss Superkeen decided that an I.E.P goal should be “the great autistic one will ask permission to leave the classroom”  This will be acheived using pecs and supported by the t.a.”

He learnt how to ask permission. For. Every. Damn. Thing. He. Does.

Wants to go outside to play? Must ask. Wants to pee? Must ask. Wants to play with own toys in own room? Must ask. Opens the door to ask if he can open the door. Closes the door and then opens it. Runs outside. Has meltdown runs inside asks to go outside.

I.E.P acheived.

Another genius idea. “the great autistic one will learn to use scissors effectively” he will be supported in this by a teacher aide. There will be plenty of opportunities to practice cutting things.

Are you freakin kidding me!!!!!

Try saying that like this. I want my sugar loaded 2 year old to learn to use a chainsaw more effectively. Because really it’s the same damn thing. Nope pass on that one too.

How about “the great autistic one will share news with a buddy each morning”

What???? He can’t talk and indulges in really bizzare and inappropriate behaviour. Not to mention he lives with 2 crazy people, and a 16 year old I like to call mumbleteen and let’s not forget the dog with an i.q. of a banana sandwich. What’s he gonna share? Miming the dog barfing up half a shoe and a bag full of dorritos while he’s bouncing naked on the tramp and mumma practices drinking vodka with milk cause he poured all the orange on the floor and made pretty patterns.

Not helpful in the ‘real world of autism’

I vote we move to a simpler model of i.e.p focussing of real world goals one at a time.

Next goal. –
Social skills, self managment, fine motor skills, co-operating with others, following instructions
-“When mumma asks ‘where’s my vodka’ the great autistic one will respond by fetching the vodka and juice and pouring into a glass.” This will achevied 80%  of the time or better. With help from dadda

What say you internets people? Love or hate ’em. I.E.P.s? Ever had an acheived goal backfire on you? Let me know your thoughts.


One more Awesome out of you and you’re getting a Smack!

You can pick your nose, you can pick your friends but you can’t pick your family? Anyone heard that one?

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I am not by nature a participially sociable person. I have very few friends and that is by choice. Sometimes I blame me for not having a wider social circle, sometimes my up-bringing, my ex, my husband and OFTEN Autism. But I don’t think it’s any of these really. I just think I don’t like people. They baffle me, annoy, disgust, confuse, horrify and irritate me.

That said I do have a few friends. But what defines a “FRIEND”. I sense a list……….

As confirmed by facebook =72 (this does include 12 relatives though) so 60

Ask for bail money = 1

Get blind drunk with = used to be about 40 now maybe 6 or 7

Look to for consolation when bad news occurs = 3

Share good news with = 20

Regularly correspond with (weekly via any format) = 5

Ask to babysit the great Autistic one =0

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So what that list shows is that I have 3 or 4 people in my life I really like and they are all great friends. Unwavering in their support, always there with a comment or urgh the ubiquitous cyber *hugs* which irritates me no end. These guys ‘get’ me. And I love really really like and respect and enjoy that about each and every one of them.

But (and there always has to be a but in blogs like this)

Awesome. Your Awesome, you guys are Awesome, you’re doing an Awesome job, you’re such Awesome parents. You’re so Awesome with (the great autistic one).

Really? Awesome? No I’m not awesome.

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I get that my friends are trying to convey, pride or respect or or something else but awesome is not the word I’m thinking of.

Tired, Disorganized, Slack, Rude, Short tempered, Frustrated, Fed-up, Self-absorbed, Dis-interested, Confused, Ungrateful. Yes all of things. But Awesome. It’s a hell of job description to live up ton a daily basis.

Friends. Love the thought. Appreciate the unwavering faith in my abilities as autism mummy of the moment.  And I do mean that. In writing this post there is a nagging sense of ingratitude which is not the case. Hell I’d give you bail money if I had it, talk on the telephone *shudder* if you needed me too. I’d even respect you enough to sit there have let you waffle on about shoes, or rugby or other such things that bore me. And I respect you for not understanding CAptain Tightpants references and my obsessive need to own a Jayne hat

But please lay off with the awesome. Please. It’s hard work living up to your own expectations let alone everybody else’s. As my friends I know they’ll get this. I’m sure there be accolades of another sort along with messages of “oh I don’t know how you manage” “I don’t think I could” “but YOU ARE awesome” “we just think your an incredible person doing an amazing job”

The secret is I’m just a person. Raising a kid. Any other decent parent worth a damn would do JUST AS GOOD a job as I’m doing and possibly a lot better too. I’m not some Autism guru scheduling every moment of the day, writing social stories, participating in the lastest round of therapy, trooping off on a bus for swim/music/gym lessons.  I can’t even get my act together to vacuum his room most days, let alone create the wall to wall pecs orientated visual timetable he deserves. I am many things, my husband and kids are many things. My friends are a fantastic bunch of people that brighten my darkest days and laugh at my cheesiest jokes. It’s all about you guys baby!

Hell I think it’s an achievement if I get through the day with my own undies on, without losing any of the kids, setting the kitchen on fire, flooding the laundry kicking the cat, swearing at the t.v. or trading the kids dog for a remote controlled helicopter.

Cause lets face it. Remote controlled helicopters are……………Image

So internets what say you? Do you have the most amazing set of friends ever? Any one word you hear that drives you nuts? How about living up to expectations? I’d love to hear from you


Autism; Not for the weak

Autism is to parenthood what drill instructors are to pre-school ballet classes. Highly confusing, scary as hell, somewhat inappropriate and has a tendency to make you cry and wet your pants.

I assume this anyway. I never met a real drill instructor.

I have met autism. Head on in your face from 5am

This morning the great autistic one woke up happy. REALLY REALLY HAPPY.

And loud. Did I mention loud.

I woke up sick. Wonder dad was at work. Ahhh the joys of shift working husbands. One cannot reason with autism. It is an unreasonable bitch. You can’t explain to autism that your feeling tired or sick or sad or lonely. Autism doesn’t care about things like that. Autism cares about 5am muesli bars, and the wrong episode of Thomas the Tank Engine and the smell of raindrops on the window.

Autism is our best friend and our worst enemy. It’s our most welcome guest and the pain in the ass relative that will not leave.

Autism makes us stop and listen to the leaves in the trees and watch the pattern of shadows dance across the driveway.

Autism doesn’t let us sleep, it stops us from talking to each other. It won’t let us watch our favourite movie in the middle of the day.

Making peace with autism isn’t easy. Some people never find their way. They are always raging against the invisible beast, battling it.

Some days I win with my personal fight and I love the autism and I embrace nurture it enjoy and laugh with it.

Other days I lose, I hate it, argue with it swear, lose my temper and yell at it.

Today I was too tired too sick too run down. When autism woke me at 5am this morning and I was alone and sick and it hurt to move and I threw up everywhere. I knew today wasn’t a day for fighting. Today was a day for giving it and letting autism win. Today was a day of knowing my limits and how far I could push them. I decided to be a hero and ask for help.

Yay me. Where’s my Gorram cape?

I have always wanted this blog to show a somewhat lighter side of life with Autism but today, I’m too tired, too sick so perhaps a little realism instead.

So what say you internets any stories you want to share? What’s your relationship with Autism today? Is today a good day or a give in day?


Oh sleep, where for art thou blessed creature

It’s been longer than I would have like between posts. There’s a reason for that. But I can’t think of it right now. All I can think of is sleep and the lack of that I’m suffering, damn lucky Americans and for odd reasons skittle vodka.

First. Sleep. What is it? From the wise and venerable Dr. Google I give you this

http://en.wikipedia.org/wiki/Sleep.

In our house as it is in many Autism houses sleep is not as simple as You’re tired. Lie down in comfortable spot. And darkness ensues

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No bedtime is a carefully scheduled event that requires, a team of crack paratrooper trained ninja psychologists, some serious choreography and a large does of unbridled optimism. A shed load of drugs and some ear plugs are optional but highly recommend.

For reason my beloved friend science has yet to explain many of our autism blessed offspring don’t sleep.

I am still pained by the memories of our young fella as a 8 month old not sleeping. At all. Wonder dad and I would take turns 1 would stay awake one night and then sleep the next. Talk about tag team parenting. And even before then he wouldn’t sleep in his bassinet as a new born or his cot(crib for all you North Amercians tuning in). The only place he would sleep was his battery operated motorised swing. What a magical wonderful device that proved to be. I have searched in vain for an adults sized one but no joy yet. I miss that damn swing.

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At aged 2 1/2 when “offically” diagnosed. Oh how we laugh at those crazy days we got told about the most wonderous happy pill Melatonin Image

Incredible stuff. A synthetic version of the stuff our brains naturally produce with one minor catch.

You see here in New Zealand where we live, melatonin is only available by prescription. And many G.P.’s haven’t heard of it. Also here in New Zealand our government subsidises many prescription medicines.

But not melatonin. So a months course costs in NZD $31.90. Plus the cost of a doctors visit. $39.00 average price so $60 a month for sleep

Vodka costs $29.00.

Bed time routines are highly structured event. Like the Olympics but without the glory.

First we get our pull up, then we flap. Next awesome dad finds pj’s so after the kid had screamed arched his back, had a flap, turned off the computer, squirrelled away his night time feast of chips, screamed some more, punched mumma and given her the “I love you” headbutt, we can proceed with the putting on of the pjs. A few laps of the hallway, another I love you headbutt. And away he goes with dadda to get a dose of poison melatonin. Spit half that out down his shirt, have a scream cause the shirt is wet, change of top another does of melatonin and away he goes.

Wait forgot to say goodnight to mumma. Back to mumma kiss, head squeeze, flying leap into her chest, headbutt………and now to the bedroom.

First pillow, then ‘friends’ nana blanket, quilt, milk, chips, and dvd chosen.

Dadda gives a kiss, closes door, wait 24 seconds for the screaming opens the door and fixes <milk, blanket, friend, dvd, pillow, weather, state of politcal unrest in the middle east higgs bosun> and ……………anywhere between 20mins and 4 hours.

Bliss

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For AT LEAST an hour or 2. Until the medicine we can’t afford stops working usually this occurs sometime between 10mins after we fall asleep and 4am. Unless I think about sex, then it’s about 47 seconds. There is a reason he is our youngest child you know. Last night I managed a whole 4 hours sleep. And yet I still managed excellent grammer

So that’s our sleep trial. How about you internets? What warsleep stories to you have to share. Can you even remember where your bed is? Let me know what you think.