The party is over.

One more to go, but six days to recover.

Boo had a wonderful time. The kids were well behaved. A couple I wanted to strangle. A couple I want to adopt. 10 kids didn’t show, 6 had tummy bugs and their parents called to apologise –WOW – one mum went as far as popping over before the party to say J wasn’t coming but here is Boo’s present anyway……. How cool is that!

27 kids. 5 surly teenagers until the 6 month old baby came, then marshmallows in Emo garb. 4 adults. 3 conversations with the ‘ferals’ – one of them is growing a freaking BEARD! So I asked her how she liked my t-shirt. Bwaaaa haaa haaa!

Everyone but T had a good time. T is a tiny little dynamo, blindingly street smart with amazing blue eyes. She drives me nuts sometimes she is so freaking adult, but I love the kid. She was having a good time until I had to tell her off. She was on the trampoline with a boy and beating the living shit out of him.

It was a fun wrestling game that quickly got out of hand after she had eaten her body weight in unicorn turds (aka mini meringues). She was physically picking him up and body slamming him down. The boy (also T) was trying to save face cause T is half his size. But enough was enough. I ended up having to scream at T to get off him.

He’s all like ‘It didn’t hurt’,  ‘I’m OK’,  ‘I let her do it’ (so brave for a 7 year old) limping into the house trying to hide his tears. I sat T down and told her that she really shouldn’t do that cause she could get hurt one day when someone fights back.

‘Don’t worry Kelley, I can take care of myself’

Damn right she can. She scares me!

So T spent the rest of the party sulking. Refusing cake, icypoles and further turns on the trampoline. She sat out the potions class and pretended to be unimpressed with the teens ‘exploding’ experiments. Oh, it was so wife-pissed-off-at-husband-get-back-by-punishing-myself, I was stunned.  And amused.

Boo got some amazingly thoughtful gifts, adorable cards (lots of ‘you are a good friend’, ‘I love you’, ‘we are best friends’ handwritten cards *sob*) and some what-the-fuck presents.

The 2 blocks of DAIRY MILK chocolate from the woman I was lamenting having to do everything dairy free to and she gave me a fucking RECIPE. WTF?

This make your own animation thingy that plugs into the TV…. oooh it is so cool! AMAZING!

A dirty ball. You could have fucking washed it first before re-gifting dickhead. WTF

The mum that called from out the front to ask what to buy Boo….. I told her $5 in a card is perfect. She walked in the door 1 minute later, $10 in a generic card……. LMAO

Tons of artist supplies. Pens, paper, paints, sketch pads, textas, crayons, artist canvas, coloured pencils, charcoal….. Boo will be set for at least a month 🙂 BRILLIANT

The weather was perfect. A little warm but the rain held off. Thank you everyone for doing those little anti rain dances for me.

After everyone had gone and Boo had enough time to decompress, he came to me.

‘You know what Mummy?’

‘What my Boo?’

‘It was a great party’

‘Yes it was precious. Did you have a good time’

‘I did. Fun was had by all’

Yes, indeed. Everything was so worth it just to have that conversation with my Boo.

You rock Boo. Now it is 10.30pm, get the fuck to sleep.

***************

I will update the party blog with more details and photos over the next couple of days. Right now I have a hot date with a huge glass of red and a footspa.

Some would say why bother writing a letter to Boo, he isn’t going to read it and if he does he won’t understand. I say, I was told this boy wouldn’t do any of the things he has achieved, who knows what the future holds. And if he is 40 when he reads this letter, then I am cool with that. And if he never reaches the point where he can truly understand it, cool again. As my Moo says….. its all good.

My Boo,

My booful boy. My precious little man.

My forever baby.

Oh, how we wanted you. For years Daddy and I tried for you with many losses along the way. But, although hard, they were necessary for us to have such a wonderful little man at the right time. When you were born we were ready. Your sisters were ready. We were all ready for the lessons you would soon teach us. Patience, strength, persistence, courage and pure love.

I remember when you were born. Such a calm birth compared to your sisters. The doctor handed you to me and I held you. Something I didn’t get to do with the girls, I was too sick. In recovery I fed you straight away. You stared deep into my eyes and I wept. The connection was there from the first few minutes.

I remember our first morning together. Daddy had to go to work and I was still in the hospital. We were so lucky to be in a hospital where the Daddies got to stay. We had our own room and a queen sized bed. The three of us together. I had the radio on to listen to Daddy and so you could hear his voice.

‘Don’t want to miss a thing’ by Aerosmith came on. I know it is a love song, but the words fit perfectly to how I felt about you. I could not stop staring into your perfect little face. To this day that song makes me cry. Happy tears.

Then you turned blue. Three times you had to stop breathing before the nurses would take me seriously. Then all hell broke loose. We lost our cocoon and you were transferred to the special needs nursery. How ironic.

For 18 months you had a breathing monitor attached to your body. Affectionately coined the ‘ticker’ it made a ‘mysterious ticking noise’ whenever you took a breath. If it was dislodged or you stopped breathing a deafening alarm would go off. It didn’t need to. I was so attuned to the ticking I knew before it went off.

Just after we graduated from the ticker you were diagnosed with Autism. My little genius boy, who was reading and writing already just choosing not to speak was…….. different.

We developed our own little language in sign.

I love you.

Want more.

Cuddle

And my favourite. You are my sunshine.

We would sing it together all the time. In the car, on walks, in the park, at the supermarket. In voice and in sign. Your eyes would light up when I would sing and you would grab my hands to make me sign it too.

You are my sunshine

My only sunshine

You make me happy

When skies are grey

You will never know, dear

How much I love you

Please don’t take my sunshine away….

Boo, you are my sunshine. I might complain about sleeplessness and destruction, but as I sit here, in the pre-dawn of your 9th birthday, with you laying next to me – Daddy relegated to your bed as is quite often the case – I gaze at you and realise how lucky I am.

Nothing comes easy in your life. You are constantly bombarded by sounds, images, smells that distract or distress you. Yet you have come so far. Much further than anyone ever hoped for. You are a true miracle. A lesson in determination. And in pure innocent joy.

Whenever I need to remember, I just have to watch you eat an apple, play on the computer, hear a new song or give you a tickle or cuddle. Pure Innocent Joy.

My forever baby, we are one.

Love Mummy.

xxxx

P.S. I hope you like your presents. They are not what your asked for but firstly, you are not old enough to drive a taxi. Secondly, Streets icecream won’t let me have one of their freezers unless we own a store. And lastly, I have tried to get you are real movie clapperboard but Mr. Speilberg won’t return my calls. But I am on it. This is the one, right?

clapperboard.jpg


 I wrote this this afternoon.  While I was white hot with anger.  I considered deleting it, but thought better of it.  I considered toning it down a bit, but thought, no.  So will I regret it after hitting the publish button? Perhaps……

*****************

I am sitting here shaking with anger.

Oprah is on  and that fucking moron Jenny McCarthy is spouting her sons recovery story.

I want to reach through the TV and wring her fucking neck.

Do you REALISE the damage you are doing!

MOMMY FUCKING INSTINCT.  If she says that one more time I will lift the hulking enormous television and throw it through the window.

So, Ms McCarthy, all the parents without ‘recovered’ kids (apparently Autism is like being hit by a bus, you recover and then you have a little boo boo – WTF!?!?!) just don’t have MOMMY INSTINCT. MI for short.  I am sure she has trademarked that one.
OMG.  I just don’t love my kid enough.

My son is GFCF by default. LOOOOOOOOONG before the Autism was diagnosed he was milk free, LOOOOONG before I heard of the ‘autism diet’ we were trialling gluten free.

My kid did ABA, speech, OT, no artificials etc etc, but my kid is still Autistic.  He will always be.  The shit and toothpaste all over my walls is freaking testament to that.

But if I had MI ™ and a little more love for my child, he would be cured.

Oh Jenny.  You, my dear, are delusional.  Sitting there with your Pob (just like Miss Posh) talking about your son being broken In. Front. Of. Him.

I look at that kid and I CAN SEE THE AUTISM!  I thought he was recovered.  I hear the echolalia.

‘He says the most amazing Budda things’?  You fucking idiot.  He is mimicking.  It is echolalia.

He is clearly maturing.  It is clear that the therapy has made a difference.  ABA does that.

Now she is talking about the MMR, apparently she had a little voice tell her it would cause Autism.  Apparently the seizure her son had  was preceded by the ‘little voice’.

Oh. My. Fucking. God.

My phone is going to be ringing off the hook tonight.  I will be inundated with people asking me to help them recover their kids.  Any one have Ms McCarthy’s phone number?

My son was diagnosed with Classic Autism.  Classic, no language, screaming day and night.  I was told he would never have functional language or toilet train.  I was told to take him home and love him.

He is now doing amazingly.  Thanks to therapy.  Thanks to hard freaking work.  But he still has Autism.  He will always have Autism.

He is not recovered.  You cannot recover from something that is – in my view – an inherited neurological condition.  Minimize the  extreme behaivours, work on other issues.  Some kids will respond to therapy, some will not.  Regardless of how much MI ™ their mothers have.  Regardless of how much they love their child.

I read a book once that the mother basically beat her child every day and then sent him to boarding school.  Now he is ‘recovered’.  Do we endorse that shit?  No.

I am sure that diet, supplements, therapy etc etc etc have helped numerous kids.  Maybe even thousands.  But in my opinion (remember I deal with parents with children on the spectrum every day so I have some experience) if your child is ‘cured’ then they were never on the spectrum in the first place.

The other chick, Holly Robinson whatever.  Her I like.  I agree with every thing SHE said.

But that McCarthy freakshow needs to be gagged.  But first bitch slapped.

And Oprah.  How could you.

Now excuse me, that child that I obviously didn’t love enough to cure needs me to go and wipe his arse.

Ok, as you know I have had a rather, ahem, freaking horrible week.  I haven’t even bored you all with half of it.

Don’t go!  I won’t whinge anymore I promise!  Well at least for tonight.  And what I have to say doesn’t constitute as whinging per se…..

On Friday nights we have sleepover in the loungeroom.  His highness (aka tiny terrorist, little turd, shit-and-toothpaste-mural-artist-extrodinaire, or my loving son Boo) has decreed that Friday night is the night that Mummy bunks down on the loungeroom floor while he does cartwheels around the room, pausing momentarily to fall, nappy clad arse first, onto said bed fellows face.  Until, at the very least, 3am.

Well tonight DH is working and in my bruised and battered and broken state I cannot possibly lug the queen sized mattress from our broom closet sized bedroom down the hall to the lounge.  So we are doing the sleepover in my room.

I had plans for tonight.  I was going to make the wands for his party.  I was going to get a head start on the washing for the weekend.  I was going to do some more of my looooong overdue advocacy work and reply to some emails.  But I am in bed.

Since 7.30pm.

Every other night it takes at least an hour to get him into bed, let alone asleep, but tonight?  He is quietly lying next to me staring at the ceiling while I type (thank God for laptops!) occasionally turning to ask me a question.

‘Hey mum, what is blood for?’

‘Where do moth’s mummies live?’  There was a moth in the room earlier

‘ What are we going to play tomorrow?’

I have so much to do.  I am going to be running around like a madwoman for the next week.  I really should get out of bed and get something done.

But right now I don’t think there is anywhere else I would rather be than hanging out with my Boo, laying side by side in my bed that is so warm and cozy.  His chubby little body snuggled close to mine, humming a tune that I can’t quite catch, his hand reaching out for mine.

The soft whisper,

‘I love you Mummy’

Yes, I have heaps to do. The washing, oh so much washing. But nothing in this world is more important than cuddling with my Boo.

I am sure everyone will understand.

Undies can be worn twice can’t they?

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.

bloginvite1stpage.jpg

and the flip side.

bloginvite.jpg

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.

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.

china-toys.jpg

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.

coffee-table.JPG

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.