I just spent 4 hours arguing with Boo. About his birthday invitations.

It was 6 hours the other night.

At one point I threw my hands up in the air and screamed.

He smirked and said ‘Strangle me, like Homer does’

Friggin’ hell. If I beat him within an inch of his life, it would be rewarding the little shit.

So he won. My fabulously creative, freaking AMAZING invitations complete with the signature of Minerva McGonagall and Hogwarts crest is now in tatters on the floor.

And he has done his own.

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and the flip side.

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It has taken 3 days and he is STILL freaking screaming about it….   tonights hysteria is about the RSVP.  He wants it to be 24/7 as in 24 hours / 7 days.

He is mumbling about it right now, as he walks his feet up the wall.  That is my fault. I said

‘You are driving me up the wall’

His reply, ‘No I am not.  I am walking up the wall.  Can’t drive, stupid.’

Fair call.   Literal little bastard.

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Just got back from a Carers function.

If I didn’t feel like slitting my wrists before, now I do.

Hobbled in the door and met up with a couple of girlfriends, H and K, laughing and giggling and ribbing me with ‘hop along’ yada yada.  Found my old case manager and had a few laughs with her and then we were all seated.

Let the whinging begin.

Freaking hell.  No wonder no one wants to hear about carers, their all a pack of sad sacks.  For an hour and a half all we heard was ‘Poor me’, ‘My life is worse than yours’, ‘Oh, if you think THAT is bad…..’, ‘I want, want WANT’ Gimme-fucking-gimme.

If these people just stopped complaining and took a breath, maybe they could get some help.

Yes, our lives are hard.  Yes, we didn’t choose to live this way.  Yes, it is not freakin’ fair.  But if you just concentrate on the negatives then yes, your life sucks.

Halfway through the chicks speech (and they held off the food till we heard about how horrible our lives were as to lose our appetite) there is an announcement.  ‘If you parked inside the yellow line out the back you need to move your car now, or you will get a $66 fine’.

Guess where I parked?

So I hobbled out there, drove around for a few minutes to park somewhere else, MILES away from the venue and practically crawled back in there.  To find a guy sitting in the seat next to me that I had my foot up on.

You know when you see a familiar face and you smile and say hello and then in that milli second you realise WHY you know that face?  And that person is probably the last person you would ever want to spend time with?  Yeah.  That was him.  I saw him when I initially hobbled in. Now my dinner buddy.

The woman droned on, the whingers droned on.  I turned to H and said ‘Do you reckon we get razor blades to go with our meal, cause I could do with one right now’

*gaffaw*

Dark look from the speaker

Speaker says ‘So after all that, how do you feel?’

H turns to me ‘Sucicidal?’

*gaffaw*

Speaker finally finishes up and the food is served.  Asshat next to me gets the chicken, I get the beef.  ‘Would you mind swapping? I don’t eat red meat.’ I sweetly request. ‘No’ he spits and then goes on to bend my ear about how horrible his life is with his child and how much his school sucks and how he keeps writing formal complaints to the Education Dept and the school hate him.  Shit, I hate him too and I barely know him!

I escape to the loo.  I make a coffee and try and walk back with it. An INSTANT coffee with full fat milk!  I am that desperate.  I turn my freaking back on him to TRY and have a less depressing conversation for a change.

He starts whispering in my ear.

I am not going to escape.  I give in and try and help him.  Every suggestion gets a condescending look and brushed off. I am going to strangle this fucking man and then who is going to pick Boo up from school while I am languishing in jail?  But I have heard they have cable TV….. hmmmm.

Then the rest of the table gets in on the act.  They hate their school, they hate their teachers, they hate hate hate.

Swap schools I suggest.  No, to inconvenient.  Speak to the teacher.  No cause when the TELL them to do things they don’t do it RIGHT.  OR they don’t even know the teachers freaking NAME!!!

Do the teachers do anything you like?  Yeah. Do you tell them, thank them?  No!  That is their job!

I stare into my sticky date pudding.  Word is out that there is a chick that will listen to your whinging and they engulf me like zombies looking for brains.

‘Help me.  Do this. Fix this. Your life couldn’t possibly be as bad as mine….’

I am drowning in a sea of negativity.

H looks at me and makes a cutting motion on her wrist.  I fall about in giggles.

One particularly pathetic specimen looks at me in disgust.  ‘Why are you so happy?’

I look her directly in the eye and say ‘Cause I don’t choose to dwell on the negative.  My life is not defined by my sons disability nor my caring role.  I choose to see my son as my child and not a child with Autism.  And I try to see the funny side in every situation.’

These people just don’t get it.  Be a horrible demanding piece of negative shit and no one will want to help you. A little bit of praise goes a long way.

Now I am totally shattered.  I need a bottle of red and a straw.  I need a shower to wash off the negativity and anger.

I need to get some good tunes going in the car while I pick up my Boo.  That kid can smell despair from a mile away.

As I was walking to my car to leave a woman stopped me, the I-hate-my-kids-teacher-but-I-don’t-know-her-name drop kick.

‘Are you going on the Shopping Tour on the weekend?’

‘No’

‘Why not?  It’s a fundraiser!’ for her kids school, the one I wanted Boo to go to but he can’t.

‘Poverty’ I call over my shoulder as I limp to my car

She turns to her friend. ‘Yeah, sure.  I have seen the shoes she wears…. she aint poor’

I smile to myself.  It’s all about appearances baby.

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My girlfriend A, sent me this today. I was bitching about all the toy recalls because of lead. She thought Boo might like to have a go at this one. Oh I laughed until I stopped. Biatch. In the nicest possible way of course….

I have a chewer. The kid chews everything. Toys, books, fences, clothes, a used emery board. A apparently unbreakable disability specific ‘chew toy’.

A coffee table.

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I wonder if it was made in China??

 Before I hit publish, I need to preface this with I am tired.  Bone achingly, hold-a-pillow-over-my-face-and-scream, shitty at the world, tired. I don’t want sympathy, but if I make you smile, let me know, cause that will make me happy.  Truly it will.  I live to make you smile.

Any offense taken at this post is your sole responsibility.  I really don’t care.  Cause, I don’t know if you know, I am freaking tired.

The internet seems to be having issues with sleep. Every blog I visit seems to have some whinger banging on about ‘oh woe is me, I can’t sleep’ or ‘little precious didn’t sleep last night and now I am totally exhausted’. OK, I admit some of the whining is legitamite, sick kids and insomnia and all that, but for the most part these people are pissing me off.

I haven’t had a decent nights sleep in, lets see,

3265 days

or

78360 hours

or since the birth of Boo.

When Boo was born he stopped breathing. So for the first 18 months he had a breathing monitor strapped to his belly. Affectionately called his ‘ticker’. Little bastard slept all through the night. I spent the time listening for the alarm to go off.

Then the little shit decided that day sleeps were not needed. At 8 months old. The kid did not sleep during daylight hours (save being sick) from before he could crawl.

I used to be a sleeper. 9 or 10 hours a night was common. DH used to say that in winter I went into hibernation. It wasn’t unusual for me to crawl into bed with a hot chocolate (sometimes laced with Baileys or somesuch) when the girls went to bed at 7pm. Kids in bed at 7pm. Sigh. I am lucky if I am in bed before the next day…..

And I was a heavy sleeper. Nothing could wake me. I mean NOTHING *snigger*. Now the slightest change in breathing pattern of the child across the hall and my eyes fly open begging God, Allah, The Goddess, anyone who will listen, that Boo will stay. in. bed.

And then there are the nights when Boo turns on the stealth ninja moves and wakes without me hearing. They are the nights where I wake with a start, the intermingled aroma of shit and toothpaste vaguely registering and notice that my bedroom door is shut. Wrestle with the options. Get up now and clean up or try and ignore it for a few more precious minutes of sleep. Then I wake up fully and my heart leaps to my mouth.

Elvis could have left the building.

He could be playing in the backyard or making dirt angels in the next door neighbours driveway. Wearing nothing but a tshirt and a smile. (Ask me how I know. No don’t, just read back posts of my blog. I couldn’t be bothered. Cause I am TIRED!)

Or calling a number he saw on the television. I sprug him a while back calling to inquire about a home loan. Apparently he ordered the house beforehand.

I fly out of bed to survey the destruction. On, at best, 4 hours sleep.

So suck it up people. Have a Nanna nap. I will crochet you a rug while I am up.

My Boo is too cute.

This morning he asked if I was hungry.

He has decided to make me breakfast.

First of all the sandwich.

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Cheese, butter (yes those lumps are butter!) mayonaise and salt. I stopped him just before he poured BBQ sauce and paprika on it.

Lovely presentation with water, 3 cheese and bacon rolls, sultanas, extra salt and a toy. The sandwich is under the bowl. Real professional like. Presented on a tray covered with playdoh.

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A Boo Happy Meal

Mmmm mmm mmm it’s stomach pump time!

And yes, I did eat the sandwich. I deserve the Mother of the Year award.

Little Johnny made an announcement yesterday. His doppleganger Kevin bobbed his head in agreement.

Autism is baaaaad. Govt is gooooood. Lets chuck some money at early intervention.

A4 worked hard for this. Our convenor Bob was there. Johnny quoted Bob’s research, and made it sound like his own. Typical.

None of the money chucking will benefit us. It is not going to get our house back. It’s not going to be retrospective and bring back our lifestyle and sanity after spending more time and money than any parent should have to spend. And any sibling should have to sacrifice.

But believe it or not, that is not my whinge for the day.

Today’s bitterness is still directed at the Govt, but it has to do with caring for Boo.

The Australian Govt has a program where if your youngest child is at school and you get govt benefits you need to study or get a job. Fair ’nuff I say. But perhaps they need to have someone take a little look at the rules.

I am officially a carer for both my son and husband. I don’t get a payment or anything for DH but since his breakdown I am recognised as his carer as well. And I work. I have scaled back my career aspirations and now work part time while Boo is at school. I had plans and was being groomed for something ‘more’ in my dept. That all disappeared when Boo was diagnosed. I am not bitter about that, I have a more important job now. My Boo is my life, right now he is asleep (finally!) at my feet on a mattress on the loungeroom floor. Snoring lightly, his hair all tousled and beautiful face poking out from his doona cocoon. My forever 2 year old.

But I get pissed off when I get hauled into Centrelink to justify my existence and forced to go to ‘back to work’ training. I am freaking working you morons! Someone please press a fucking button and leave me alone!

Then the pollies get their mugs on TV and say ‘oh the poor carers they have it so hard, they are saving the govt millions of dollars every year and we need to support them yada yada yada’ – dont piss in my pocket buddy, I have enough to do washing shit and toothpaste off the walls without you giving me extra laundry to do. And I am sure your urine don’t smell like flowers.

Now that DH is easing back into work we are in trouble.

You see, I can get respite (a qualified carer coming into our home) to go to the hairdressers or have a massage or go to the movies, but I can’t get it if I am working. If I am working I need to find alternate support. Boo cannot go into child care because of his disability, they don’t have the ‘facilities’ or ‘support’ or fucking ‘clue’ here. There is no where to go.

So I have to ask my parents. My parents that are getting older. My father who is legally blind and has many other difficulties due to the pituitary cancer which caused his blindness, the hip that he is waiting to be replaced and the fact that he is in remission from Lymphoma, my mother who is not only his carer but has health issues of her own including lyphodema after surviving breast cancer. (Yeah, remember yesterday saying I didn’t need someone else wishing me bad luck, that is not the half of my parents dramas) One of them needs to come and care for my child that either my father can’t see or my mother is shorter than so I can go and pay my way in society.

Apparently I should ask my 15 year old to care for her brother. Apparently I should ask her to take responsibility for Boo and give up her life for him. It is bad enough that the girls know that they will have to take over the care of their brother once I have gone for the long nap, I am not asking them to take sole responsibility for him while their parents go and try and earn a wage.

So WTF am I supposed to do Johnny? While you are paying lip service to our plight, I am raising revenue for you in your govt office and caring for 4 of your citizens (my parents need a lot of help too), raising 2 potential tax payers to pay for your retirement while my brother is off fighting your war so you can save face with your mate George.

I have been keeping up with my side of the bargain.

You want me to work, I want to work because it makes me feel like I am something other than a carer.

So how about a little support instead of a pat on the head. It messes up my hair.

(yeah I know 3rd post today, what can I say I am full of ’em tonight)

From the brilliant minds that brought you:

Drinking songs Volume 8

and

Songs to bury your neighbours cat that you accidentally ran over with your lawn mower to

we present you with

Songs to wipe your sons arse to Volume 1

Mummy sings Name the Planets from Blues Clues…

The sun is a hot star

And Mercury’s hot too

Venus is the brightest Planet

Earth, home to me and you……..

Boo sings

‘We have to take our clothes off to have a good time

OH YEAH!’

Do you think Mummy might be behind the times? And someone needs to contact Joe (cause Steve is dead doncha know?) and tell him to rewrite that song cause Pluto is no longer technically a planet, it is now a ‘dwarf planet’. This has got the PC crowd up in arms cause ‘dwarf’ is a derogatory term. So from hence forth it will be known as a moderately smaller than the others not-that-there-is-anything-wrong-with-that planet. With it’s own support group, plastic wristbands and telethon.