Monthly Archives: December 2012

Wielding the diagnosis weapon

Something I always struggle with is “using” autism.

With a kid as severe as mine is life can be extremely overwhelming walking through the autism minefield and the temptation to milk that puppy for all it’s worth is TOO tempting at times.

I always worry I am going to be one of “those” people. You may know the type, they seek a diagnosis for real or imagined reasons and the proceed to jump up and down and demand every single piece of help/support/advice/assistance/funding then complain bitterly it’s not enough and they had to wait to long, it’s not what they wanted and damnit surely there is more!!!

I lie awake at night worry myself into sleep deprived neurosis with the thought I might become one of those assholes. Then I’d have to smack myself.

Then there’s the other side of the coin those that berate and degrade you for even seeking a diagnosis, let alone admitting it and then horrors of all horrors “using” it to “get free shit for your kid” or “coping out of your responsibility”. those assholes just need a smack.

What to do what to do??? What’s right, what’s wrong. Where can you find acceptance.

If there are folks out there that don’t want to “label” their kid then so be it, I never had that option, it’s not like you can take a look at my lad standing in the queue at the supermarket trying to get his *ahem* out of his nappy to have a wee fidget while simultaneously squealing and flapping in a circle and attempting to bend over and smell the floor and excusing him as “a bit different”. There’s no hiding that behaviour, no “oh he’s just a little sensitive”

So what to do, I couldn’t live with myself if I sucked every system dry and then flaunted it to the rooftops, there are kids out there that might need things more than my lad, but I sure as hell can’t walk these woods without a map so to speak.

I recently received an invite for the great autistic to attend the special needs kids Christmas party. It’s a huge event, sponsored by large companies and the kids get spoilt rotten, it’s a ton of fun, the jolly fat man puts in an appearance  there’s food and games and entertainment out the whazoo. It’s an invite only deal as they limit the numbers. Kids in foster care and abused kids are also invited. I sent his invite back with a polite note thanking them and asking them to invite someone in his place. It wasn’t right for us to go, the whole event would be lost on the great autistic one, he’d struggle with the sensory overload and we’d only be going to get free food and toys. And that’s not cool. he doesn’t need it, he’s not sick, he’s not unhappy, he has a loving family that spoil him anyway. So I’ll pass on being a leech.

But we get free nappies from the government, more than we need sometimes so I’ll take those. They are funded by taxpayers i.e. us and provided by our local hospital board for whom awesome dadda is sub contracted to. I wish I didn’t need them I’d much rather the lad be toilet trained but so be it. As soon as we don’t need I’ll gladly give them up

We get a grand total of 12 days government funded days off a year and I bitch to one and all it’s nowhere near enough. There are kids attending the care home that appear to be extremely functional (their parents are one of “those types”) and because these kids parents leech off the system there’s less money for my lad and I’m pretty pissed about that. There isn’t anywhere or anyone else for my lad, we have one, ONE person we can trust our son with for a couple of hours at a time, she’s a young lass, my god daughter actually and she’s only been helping us for a few weeks. 

Our lad is just too much for anyone else, too hyperactive, too unpredictable  too difficult to communicate with, too noisy, too violent, he’s not toilet trained, he’s doesn’t eat, he can’t feed himself, so if it’s not us then it’s nothing. 

So I want more damnit. I need a break more often than I can get, with other kids that need me, a high demand husband with a high demand job and my own nervous system going into open revolt against my wishes I want my share of the pie and I’ll take what little I’m given.

The government pays extra for his education, I’ve handed alot of that back as it’s a waste of  money, we now teach at home via correspondence as school just isn’t our cup of tea, so I’ve saved the bean counters a few bucks there too. If I can ever get my act together I’ll apply to homeschool him and then the government can have all their money back and give it to some ones little brat with a quasi ASD label. Maybe they can hire the little darling a bodyguard and stop them belting the crap out of other kids, I dunno. I’m fairly bitter about our experience with state funded special education, can’t you tell?

So where does that leave me, selfish, a martyr, sanctimonious, tell me cause I don’t know. Actually don’t tell maybe I don’t care.

I’ll try to find my own mental comfort space for my own sake.

Bottom line is I didn’t ask  for an autistic kid, it wasn’t in my game plan but it’s the hand I got dealt. So I’ll deal. For those that say “take all you can get and then ask for more” nah no thanks, not my cup of tea. Will I think less of you for doing it? Yeah probably but hell don’t let that stop ya, For those that say “don’t breed ’em if you can’t feed ’em your kid your problem” get stuffed, we work hard, hubby in a workplace doing a fairly awful friggin job that would make most people gag and I’m at home educating my son, trying to toilet train him and finding ways to make a difference by volunteering in between meltdowns and appointments cause I can’t work.

For those that say, “hell lady good on you, thanks for saving a few bucks for someone else’s kid, good on you for being sensible and sorry you can’t have more time off”. Thanks man for being the voice of reason.

Peace!

 


2012 can get bent ya bastard!

Well 2012 is rapidly drawing to a close and now it’s time to reflect purge and get ready to start again.

Here on Planet Autism where we live this past year as been a real bastard. I would use stronger language but I’m too young for that.

We had a reasonable January, except for that bit about nearly walking out on my husband as he struggled to accept he had depression and not spending nearly enough time with our darling girl (that’s a WHOLE ‘nother blog entry right there).

Febuary was back to school and the start of dramas with tiny cramped classroom shared with another ASD kid and too many teacher aides and not enough work or money on the home front.

March saw us with a specular broken arm on the great autistic one after a flying superman dismount of the swings went wrong.

Image

This is not good when you’re a flappy kinda chappy

April was fairly acceptable, had a fantastic time with girl and her buddy. The great autistic one was still in a cast and smelling kinda of funky but this point but we solider on.

May saw removal of the cast. Finally.

June the pain in the teeth started him and us screaming.

July he was still screaming, we wanted to start drinking

August he finally stopped screaming because his teeth were fixed. We had 2 months of waiting while he was in agnoy for the public health system to fix his teeth because it turns out where we live there is no such thing as privet dental work on small autistic boys

September was the the begining of the end of our relationship with his school. Frustration, anger, worry and barley contained rage filled our days. During this time I also spent 10 days helping a friend who was well overdue to have her enormous baby. The time away with her wee guys was challenging but rewarding and I have no regrets.

October saw the end of the great autistic one and school. Also ultimate dadda finally landed  a permenant contract at his job…….working midnight to 8am 5 nights a week including during the weekend. Which mean that while our money is great(for which I am grateful) I am effectively raising and educating at home a hyperactive, LOUD, angry, severely autistic boy on my own whilst failing at convincing him not to wake Ultimate dadda who then promptly turns into a grumpy zombie

November saw me feeling rather under pressure, juggling everything and not dealing with the isolation. November saw the start of some regressions for the great autistic one and some of his more “interesting” behaviours

And now here we are in December, it’s stinking hot over here in good ole N.Z. our beloved pet dog died suddenly 3 weeks ago from medical misadventure from her vets. – Bastards. The city council came past and sprayed our front verge for weeds on a windy day and killed my passion fruit vine. – Bastards. And the great autistic one continues to scream, squeal, hit, head butt, poo on the floor and get stuck to things when you put him somewhere his way through the festive season. – I’m having a bastard of a time

Happy  Holidays Everyone.


A window into our world.

It’s two days since The great autistic ones birthday, and it’s been 48 hours of hell.

It’s all because of a book.

This book

Little man has been eyeballing this book for months in our local cheapie chainstore here in New Zealand. The place is called the warehouse and I think it’s over seas equivalent is possibly Wal-Mart.

The warehouse is notorious for selling crap goods at inflated prices but they are a market leader here and you can buy anything.

Anyway back to the book, little man really loved this book, everytime we went to the store he’d sit and play with it. On the afternoon of his birthday I grabbed my last $25 and went and brought this book. I quickly touched some of the buttons and they appeared to worked.

Off I trotted back home to deliver some birthday joy.

But some of the buttons didn’t work, it’ll be old batteries, we popped some old rechargeable batteries in, nope now it worked worse.

Fuck, I think. Little guy is fairly unhappy at this point but there is still one or two buttons that work so he’s not entirely unhappy but we can see a meltdown approaching.

Ok so back to the store to get some brand new batteries into the book and voila…………..

Nothing, book doesn’t work at all. Original shop batteries back in, nope nothing. A microsecond blip from one of the buttons and that’s it

Right ok we think back to the store and we’ll exchange it for one that works.

Dantes 8th circle of Hell

WRONG! They sold the last remaining book in the hour that we spent trying to get our one to work. We tried to swap the book for a similar one but sadly little man hates the new book.

Little man has been screaming ever since. He is inconsolable. And we live in a city with only one store so no chances of going to a different branch to see if they have it.

Check on-line. Nope sold out.

Try three different online book stores including Amazon. Nope

Finally found a copy of the damn book in England. But I did mention I had spent my LAST $25 on the book. So I’m ordering it tomorrow. And hoping to all that’s kind and decent in the world that it will work when it gets here

So a little boy waits, and while he waits, he screams, he cries, he can’t sleep, every little tiny frustration sets of massive hours long  tantrums, meltdowns and crying episodes.

Ice cream helped soothe the savage beast a couple of times, until we ran out. Now we’re back to screaming crying, sobbing and not understanding why we can’t have what isn’t here because a store sells broken things. Maybe just maybe I should take my broken thing into the store and ask them to fix it.

Ahhhh who am I kidding they won’t care. They got their $25. And we got pain, agony, heartbreak, and utter utter anguish.

So a family waits, with earplugs. And caffeine. And a packet of painkillers.

Peace.


the 12 days of an Autism Christmas

On the first day of Christmas my autistic one gave to me

A meltdown under the Christmas tree.

On the second day of Christmas my autistic one gave to me.

2 unwrapped presents and a meltdown under the Christmas tree

On the third day of Christmas my autistic one gave to me

3 puddles of wee, 2 unwrapped presents and a meltdown under the Christmas tree

On the forth day of Christmas my autistic one gave to me

4 hours of stimming, 3 puddles of wee, 2 unwrapped presents and a meltdown under the Christmas tree.

On the fifth day of Christmas my autistic one gave to me

5 screaming scenes, 4 hours stimming, 3 puddles of wee, 2 unwrapped presents and a meltdown under the Christmas tree.

On the sixth day of Christmas my autistic one gave to me

6 ornaments licked, 5 screaming scenes, 4 hours stimming, 3 puddles of wee, 2 unwrapped presents and a meltdown under the Christmas tree

On the seventh day of Christmas my autistic one gave to me

7 drooly things, 6 ornaments licked, 5 screaming scenes 4 hours stimming, 3 puddles of wee, 2 unwrapped presents and a meltdown under the Christmas tree

On the eighth day of Christmas my autistic one gave to me

8 Thomas repeats, 7 drooly things, 6 ornaments licked, 5 screaming scenes, 4 hours stimming, 3 puddles of wee, 2 unwrapped presents and a meltdown under the Christmas tree.

On the ninth day of Christmas my autistic one gave to me

9 poopy pull-ups, 8 Thomas repeats, 7 drooly things, 6 ornaments licked, 5 screaming scenes, 4 hours stimming, 3 puddles of wee, 2 unwrapped presents and a meltdown under the Christmas tree.

On the tenth day of Christmas my autistic one gave to me

10 minutes peace, 9 poopy pull ups, 8 Thomas repeats, 7 drooly things, 6 ornaments licked 5 screaming scenes, 4 hours stimming, 3 puddles of wee 2 unwrapped presents and a meltdown under the Christmas tree.

On the eleventh day of Christmas my autistic one gave to me

11 flying headbutts, 10 minutes peace, 9 poopy pull ups, 8 Thomas repeats, 7 drooly things, 6 ornaments licked, 5 screaming scenes, 4 hours stimming, 3 puddles of wee 2 unwrapped presents and a meltdown under the Christmas tree.

On the twelth day of Christmas my autistic one gave to me.

12 shots of whiskey, 11 flying headbutts, 10 minutes peace, 9 poopy pull ups 8 Thomas repeats, 7 drooly things, 6 ornaments licked, 5 screaming scenes, 4 hours stimming, 3 puddles of wee, 2 unwrapped presents and a meltdown under the Christmas tree

.


The “suck it up sunshine” support group

Where’s the support group for support groups?

It’s seems in this day and age of everyone playing nice and holding hands and getting in touch with their inner whatever there is a support group for everyone

Autism Support group? By the bucketloads

Homeschooling support groups? They have databases full of them.

Mothers rasing sons. Yup.

Sons raising mothers. No idea but I would assume so

Help Help my dog ate my last sock and the cat killed the blueberry support group. Hmmmmmmmmm surely you’d like to think after all it was traumatic enough for me

But Suck it up sunshine? Not yet.

I’m looking for a support group to join, but I can’t seem to find one I fit in so perhaps I should start one of my own.

The “there’s no support groups for me to join support group”.

We’ll meet monthly, for those of us suffering form ocd we’ll need to decide if it will be done by calender date or 3 Thursday type deal.

For those of us with ocd and agoraphobia we’ll make attendance via web cam optional every 2 third Thursday.

For those of us with ocd, agoraphobia and camera issues every first third Thursday we’ll give you the option of phoning in your issues.

For those of you with phone issues every third third Thurday you can write in your issues and we’ll talk about you behind your back.

For those of us with trust issues, ocd agoraphobia and phone issues every 4 third Thursday we will be drinking at home.

Possible topics of conversation can include. Who the hell decided on Thursdays they scare me. How not to talk to people in large group situations, preferred avoidance techniques, margaritas recipes and 100 and 1 fun things to do when drunk off your ass while home alone.


It’s the little things………………… apparently

My blogging has fallen off of late and I finally figured out why. I always hoped that this blog would remain funny light-hearted full of jokes and laughs and a place to share our family’s irreverent view of how our lives are affected by autism.

I’ve always tried and sometimes failed to never get bogged down in the “woe is me” category or even worse “look at me my kids got issues worse than your kid”

But in saying that our son is very very unique. He is as far from a typical kid as a poodle is from a wolf. Members of the same species perhaps but that’s about where it ends.

Our son is also handsome, and I’m not the only one that thinks that he truly is a cute looking kid and he has a weird sorta charm about him. People are drawn to our boy, they come into our house and are fascinated by him. I can count on any post/photo/video of him on facebook garnering 3x-4x more comments and likes than anything else I post.

So on that note perhaps an update on Boo Bear as he’s called here and other places too.

Boo will be 8 on Monday, that’s so weird for us! He doesn’t seem to age like other kids do he hasn’t really changed much in several years he’s much the same now as when he was 4. He’s still playing with the same toys(we’ve replaced them a few times though 7 year olds are very hard on toddler toys) that he’s been playing with since he was 2. Watching the same dvds that he did then with some new ones thrown in. is favourites remain with baby einstein, thomas, blues clues, mickey mouse leading the way. He still has many of the same books on his bookshelf. He’s still not toilet trained, not eating any better, not responding any different to things that set his off and he still doesn’t sleep.

But some things have changed. He can use a 4 or 5 word request. He CAN but doesn’t mean he wants too or does. He can put socks on now and his shoes too. He will go and have a pee if you ask him most of the time. Certain folks would argue all of the academic progress that’s been made, but honestly I don’t really care about those, they aren’t ‘useful’ to us. He still can’t consistently respond correctly when people ask what his name is. Ask him how old he is or where he lives? You’ll get nothing, maybe a hummmmm or a “dadda” or even Caribou. So pardon me if I don’t rejoice that he can correctly identify biggest to smallest. Or skip count to 20 or write a sentence on the computer about monkeys, bananas and ice cream.

So folks coming into Christmas or whatever this time of year means to you, be thankful for the little things. When your kids are bugging you to buy the latest toy/game/clothing whatever be grateful! Boo doesn’t know Christmas is coming.

When the kids wake at 5am cause they’re so excited to open presents. Don’t bitch and moan. Be grateful. Boo wakes at 5am most mornings and he doesn’t expect presents.

When the kids come to you the day after Christmas whining they’re BORED, be grateful! Boo doesn’t know what bored means, he doesn’t understand and he can’t tell me.

I know these holidays I’ll be grateful. Grateful for all my children, living with me or not, missing me or not. Autistic or not.

Peace!