Forty Three - Gonski from the perspective of a parent of a child with Autism

Recent events in my life regarding my autistic son’s inability to attract funding to remain at his specialist Autism school have led me to investigate the Gonski report. Having been told of my son’s predicament, I have now set up a lobby group to lobby the Victorian government to change the criteria that needs to be satisfied in order to attract educational support funding if you are a child on the Autism Spectrum.

Under the current Program for Students with a Disability 2013, an autistic child must have a severe language deficit in order to attract additional funding, which means that high functioning autistic students like my son are deprived of the help they so desperately need in the classroom (or in his case, they are placed at risk of losing their place at an Autism specialist school).

As part of the process I have recently downloaded all 319 pages of the Gonski report and read most of it. I skipped the parts on capital expenditure, but read the rest and highlighted the parts I felt were important to our cause.

I had already joined the ‘I Give A Gonski’ cause, adding my name and my reason for joining to the website that was set up. I already knew the basic nature of the report, as most people who have an interest but haven’t read the full thing probably do: more funding for our schools to help our disadvantaged students achieve their full potential.

But, as I have trawled through the document, my dismay at the current state of our education system has increased, particularly in relation to kids with a disability, and even further in relation to kids in a specialist setting (like my own son). Gonski has revealed a number of problems and my hope is that the recommendations are taken on board by the Government and put into effect. Having seen the Government’s initial response to the report, however, I hold little hope that this will be the case, no matter how many people in this country ‘Give A Gonski’. More on that later.

There are really four ‘overall’ suggestions by the panel.

1) There should be more funding available to schools whose student population is considered disadvantaged, with five factors covering the definition – socio-economic status, Indigeneity, English language proficiency, disability and remoteness.
2) The way that funding is provided needs to be changed – Federal government to provide the greater level of funding for Government schools, and state/territory governments to provide the greater level of funding for non-government schools (currently it is the other way around, with non-government schools being predominantly funded by the Federal Government, and state/territory governments having to fund the bigger public system).
3) A National Schools Resourcing Body should be established that would determine the resource requirements of schools in Australia based on statistical information.
4) Funding to be allocated on a ‘per student’ level, with a base level for each student, and then loadings according to the students level of disadvantage.

These are all good recommendations as far as I am concerned, which I believe would indeed help our young Australians achieve to a higher level. It makes sense when you read it.

When it comes to the 'findings' however, I wasn't quite as excited. The 'findings' are the panel's view on the current situation, the way the system is at the moment. This frightened me.


Why?


Because when it comes to disability resourcing and funding, the panel found that there really isn't enough known about students with disabilities and their resource requirements. When it comes to specialist setting, the report devoted two....that's right, two...paragraphs to this sector, saying that immediate work needed to be done to obtain relevant data regarding the requirements of this sector because nobody seems to know what these kids need.


WTF????? How can the government (federal AND state) not know the requirements of their own charges in relation to their educational needs? WTF??? WTF??? I cannot believe this!!!


So, I decided to look into whether any of the main recommendations had been put into place yet.

Recommendation 35: The establishment of the National Schools Resourcing Body by the middle of this year, so that it could have a good 18 months of research, and a new funding model could be implemented at the start of 2014. The Government seems to have done something about this, with the establishment in March of the Ministerial Schools Funding Reference Group - perhaps not as quickly as Gonski had recommended, but it has been started nevertheless. And there is scope for Australians to add their voice (see link below) to the process.

You can see a table of what has already been done in response to the Gonski review here. I was going to go into it recommendation by recommendation, but this gives a good overview really.

It seems that there is some work being done to at least find out what resources are required by children with disability, and to work on an appropriate loading.

You can contribute to the discussion here so please do so if you have an interest in this area.

It looks like things are starting to move, albeit slowly. Of course Gonski recommends that things got started quicker than they have, but these things never work like that. I'm still not hopeful on the recommendation that the federal government funds public schools and the states/territories fund non-government schools. I read somewhere (I think it was in the report actually) that the current funding arrangement has been part of the constitution since forever, and something like that is hard and complicated to change.

Which leads me back to Change The Criteria. One of the reasons I started looking into Gonski in more detail was to see whether the recommendations meant that we would need to lobby the federal government harder than we are. I'll support Gonski until the cows come home, but none of the findings of the current situation lead me to believe that lobbying the federal government on the Criteria for ASD funding in Victoria is going to make much difference, because they don't really have anything much to do with funding the government schools at the moment. Not sure where it sits regarding disability funding in the non-government sector, but I suspect that these dollars also come from State because I'm told that ASD kids in non-government schools have to meet the same stupid criteria.

So, unfortunately for the Victorian State Government, whatever colour they may be, we will keep fighting until the Criteria is changed.

Talk later

Janeane

Forty Two - The Guilt We Feel

Seems that today is filled with 'guilt' for me. I use the quotation marks as an indication that on an intellectual basis I know that I don't really have anything to feel 'guilty' about, but I cannot help but feel incredibly guilty today.

Any parent will tell you about 'parent guilt' - the guilt that comes with putting work first for example, and missing that school assembly where your child unexpectedly (or God forbid expectedly) receives an award. Weighing up the pros and cons and deciding whether you can forgo that meeting so that you child feels like you actually care about their achievement. Weighing up whether getting to work a couple of hours late is worth ensuring that your child looks out into the assembly crowd and sees your smiling face.

Or the guilt that comes with putting off that kick-to-kick of the footy in the backyard because the toilet needs cleaning, the washing needs folding, there are bills to pay.

My main 'Mother Guilt' comes from the fact that I send my Cherub to school often at times where he could probably stay at home due to being sick. Some might say that this is not a bad thing, but usually when I make this decision, I do feel kind of mean that I've put my own needs of working (read: getting a break from the house and getting some adult conversation) over the fact that Cherub needs a rest. Particularly since Cherub has to be on the school bus at 7:30 in the morning, where he sits for an hour and a half before getting to school, and then has to do the same thing on the way home. I do spend those days worrying about how he is going, did I make the right decision, and will this come back to bite me on the backside later in the week when he gets sicker and simply cannot go to school?

Which is when my other 'guilt' comes in - 'Work Guilt'. Am I letting my work colleagues down by not being at work? Could my Cherub actually make it just one more day, so that I can commit that one more day to work? Am I being over-reactive? Perhaps? Perhaps not?

I make these decisions all the time (so it seems), and this week is one of them. Cherub has been throwing up each night since Saturday, coughing until he spews (sorry, but that's the easiest way to describe it). I've seen this before - last year in fact, when he was diagnosed with Whooping Cough.

Yesterday we headed off to the doctor's to discuss this issue, where I was routinely told that 'No, you can't get it again. It's not impossible, but it's highly improbable'.

'But can it lay dormant?', I asked, 'Not go completely away because I'm telling you Doc, this is exactly what I saw last year.' I note here the following: Cherub was immunised against Whooping Cough as a baby, and still got it last year. Cherub was immunised against Meningicoccal as a baby, and still got it in '07. Instinct is telling me that maybe my child might just have whooping cough again, based on his 'immunity' history, but still, I'm not the doctor.

A quick pat on the shoulder (metaphorically speaking) and a 'There there' and we were out the door, with no testing done and me shouldering the mother guilt of not pushing things further. Because, quite frankly, my instincts are telling me that this is not just a 'croupy virusy thing' like I was told it was.

But, having been told that this simply couldn't be whooping cough again, I decided that no matter what happened last night, Cherub would be off to school, because the 'work guilt' was already starting to settle in - I'd kept him home for what I was basically told was 'no good reason'.

Of course, last night, as Cherub settled down for bed, it all happened again. And so my mother guilt and my work guilt went into overdrive. Mother Guilt showed herself by chastising me for not pushing the point further at the Docs, however she did give me the impetus to video what was happening so that next time (and I'm sure there will be one, either tomorrow or the next day), I can show them what is happening.

Work guilt, however, came up trumps, and I said to myself 'No, this will be OK, he can go to school tomorrow, you need to get back to work, you cannot let the team down'.

Until the second time he had a go, when Mother guilt tapped me on the shoulder and said "You're kidding, aren't you? You'd send Cherub to school after this effort just so that you can save face at work and not look like you're letting the team down? Gimme a break"

At about two o'clock this morning, Work Guilt woke me up and said 'He'll be fine, just send him along', coincidentally at this time Cherub was having one of two successive (non chucky) coughing fits in bed. Work Guilt forced me to just wait it out and not go running in to Cherubs room to check....if he didn't throw up, he would be fine for school. He didn't throw up, nor did he throw up the next time, but the coughing fits lasted for nearly 45 minutes each, so Mother Guilt showed her face again and said "You can't send him to school tomorrow, he's just exhausted, and besides, look at yourself now, you've had two nights of shocking sleep and quite frankly, I doubt that you'll be able to string two words together tomorrow".

And so, Work Guilt, Mother Guilt, and Self-Preservation were now in a standoff, similar to the ending of the movie 'Reservoir Dogs'.

Mother Guilt has won, Cherub is home again today, but Work Guilt is shaking his head quietly in the corner. Self preservation knows that she doesn't stand a chance either way - it was a choice of exhaustion here at home, or exhaustion at work....but I get through that sort of thing all the time, like most parents (especially single ones), so poor old Self Preservation never really gets a look in anyway!

See you on the other side

Janeane

Forty - Funding? Don't talk to ME about funding!

On Friday I received a call from my Cherub's school, telling me that he had passed a language assessment with flying colours (a score of 93, whatever that means, 93rd percentile or 93/100 or whatever).  How good is that?  Awesome, I would say.

Unfortunately, in our situation, this rate of success is actually a 'failure', as it means that he no longer qualifies for autism specific funding, and his position at his specialist school is technically under threat.

You see, the criteria for autism specific funding (or more specifically Autism Spectrum Disorder funding) now involves THREE criteria, and you have to meet ALL THREE to qualify for funding.  You need to have a diagnosis of autism (which he has), you need to score less than 70 on the language test (which he didn't) and you need a psych assessment to say that you have problems (which he didn't even undertake, because once you don't meet one criteria, there's no point moving through the process).

My Cherub has attended his autism specialist school for the past seven years, because....der....he is autistic.  Granted, he is high functioning, but believe you me, the fact that he has good language skills has made very little difference to his emotional and social levels, which are very much behind his peers.  Nor has it made a difference to the fact that he still, at nearly twelve years old, hangs on to a poop for as long as possible because he has such sensory issues that he hates the sensation of doing a poop and won't until he really really has to.  It doesn't make a difference to his temper tantrums, or his inability to process emotions (and understand his own).  It doesn't stop him from not liking to have to wait for something (in fact, as you have seen in previous posts, his high level of language development actually makes this stiatuion worse because he can verbalise how he's feeling, but in totally inappropriate ways!).  His writing skills are still that of a prep, possibly if I am gracious we may now be reaching a grade one level.  He gets his letters around the wrong way, he is only just beginning to be able to write his letters the same size, and the words still have capitals all the way through because these are easier for him to form.

And the myriad of other issues he has - dislike of noise, dislike of crowds, crippling fear of the unknown, crippling anxiety, a tendency towards depression etc etc etc.  Those of you who know him will know what I mean.

Do not tell me that he doesn't qualify for autism funding.  Please, do not tell me this.

But, guess what?  He doesn't.  I have now read the document produced by the DEECD which states the different funding criteria and he doesn't meet all three, so he doesn't qualify under the autism criteria.

So, I get the phone call from the school to assure me not to worry, they have a strategy that they have had to use in the past to enable students to stay at the school and not lose their place.  THEY realise he cannot leave the school, but of course he needs the funding for his place.

So, from now on, my child is going to be funded because of his Severe Behavioural Challenges.

Are you F#$%^&g kidding me?

I agree, Cherub does have Severe Behavioural Challenges, but....again I say 'Der'...he's autistic, this is where they come from.  Why can't they have a level of funding for high functioning autistic kids?  Better still, why can't they just acknowledge that you don't get 'better' or 'cured', and if you've been deemed to be best served in a specialist setting, then quite frankly, by the time you get to year 7 and haven't been moved into mainstream, well, maybe this is because you're not quite up to it because your autism gets in the way, and so you get funding to be able to stay there and get the education that you deserve and can achieve to your best ability.

But now, for the rest of his school life, he will only receive funding because, on paper, he has Severe Behavioural Challenges.  My kind hearted good little boy, who doesn't hurt animals, doesn't draw on walls, doesn't wag school, but does fly off the handle when he gets confused and frightened, will from now on be pegged into that small but dreadfully nasty hole.

I understand that this is not the school's fault - in fact I am grateful that they know of another way to obtain funding for my Cherub.  Otherwise, he would literally be kicked out of his safe environment and thrown into mainstream, where he STILL wouldn't meet the criteria and wouldn't be given any funding for any support.

This is ridiculous.  He has his diagnosis, he has attended the specialist setting for all of his school life, and it is blatantly obvious to all and sundry that he would never EVER cope in a mainstream setting.  If I wasn't so angry over this, I would be spending my days crying and wondering how Cherub is ever going to get through life when even his autism is no longer acknowledged as 'real' in terms of funding and educational support as he gets older.  This is utter bullshit.

I am, of course, thinking on an intellectual level that funding is funding, and at least he is going to be able to stay at his current school.  This is the most important thing.  But I am soooooo crapped off that the only way he can get that funding is to, at least on paper, imply that the funding is needed because he is a challenging student because of his behaviour, ignoring the medical reason for that.

I will be writing a letter to the Minister for Education.  But for now I ask that you share this post with everyone you know so that they are aware of this injustice for kids on the ASD spectrum and their families.

Forty one - Tapping my little heart out

With so much going on in my life at the moment (see previous post), one would think that life was pretty crappy for me at this time. But it's not really, we're going over a bit of a hurdle, we'll get there eventually, and in the meantime I have my latest joy to keep me happy.

Five weeks ago I started attending tap dance classes - and I LOVE it!

Growing up, my very closest friend was a dancing queen; she attended troup lessons on Saturdays, private lessons (ballet, jazz and tap) during the week, undertook exams and of course 'did the concert'. Being relatively inseparable on weekends (we attended different high schools and alternated at each other's houses each alternate weekend), I used to watch her and her dancing friends as they strutted their stuff on a Saturday morning, sometimes for several hours at a time, in the old church hall up the road.

I became a part of that social group - her friends became 'our' friends, one in particular, the others always familiar faces at her birthday parties and the odd trip to the city as we moved into our teens. But I was never a 'dancer'; though I craved to be one I just couldn't bring myself to ask my parents if I could take part, and by the time I was 16 or 17, that part of life had passed me by, because as a girl of 16 or 17, the thought of taking beginners dancing lessons is a bit humiliating - if you hadn't done it by then, you pretty much had missed the boat.

Why I couldn't voice my desire is something that still remains a mystery to me, but I suspect that my excruciating level of shyness had something to do with it, my paranoia about embarrassing myself or not being 'good' at the whole dancing thing, or the fact that at home I was often praised as a 'smart' girl who loved books and classical piano (which, incidentally I WAS pretty good at!). Also, being on the....ahem....chunky side for most of my life, getting into a leotard amongst all those skinny girls wasn't something that I relished the thought of.

So, it was destiny that I was to forgo the chance to pursue my little fantasy of being the next Ginger Rogers.

But, five weeks ago I decided to finally follow this little dream of mine, which had never really subsided, and in fact was exaccerbated when another friend of mine took up tap dancing as an adult a few years ago.

Having donned the shoes and attended the classes, I have not looked back. It is just such a wonderful feeling to be finally doing that one thing that I have almost literally always wanted to do. For that one hour each week I am in another world, my problems fade away as I focus on getting the steps and the beat right. I practise most nights, in my loungeroom, with the CD that the dancing teacher provided (full of very old-school tap dancing music, titled 'Music Maestro Please' - you get the picture) playing at the highest volume level. Harry the cat HATES it when I practise, and actually attacks my legs - one night he sunk his teeth in and drew blood - but I have learned (and so has he) that a quick squirt of water from a water bottle sends him running, and leaves me able to focus on getting the tap tap tap correct.

I always thought that having made the decision to take adult tap dance classes I would somehow feel a sense of regret that I didn't speak up when I was younger, that I would lament the fact that I didn't do this when I was a girl. I was wrong.

Doing something like this at middle age has made the experience all the more enjoyable and precious.

Concert tickets anyone?

Talk later

Janeane
xx

Thirty Nine - Just checking in

Well, seeing as it's been so long since I've put fingers to the keyboard, thought I would just drop by and say hi.

First, let me tell you that there's a 'subscribe by email' link somewhere on this page where you can now sign up to receive email alerts if you're at all interested in following what I write here. I mention this not because I am a big head egotistical narcisist, but because I usually post on FB when I have written here, and I'm thinking of getting off the whole FB roundabout. I really only manage to get on there to share pics these days, with the occassional status update, and quite frankly I can do that from here - with more detail and in a more personal way. Kind of like writing a letter to all of the people I like/love all at once.

With no swear words.

Mostly.

This weekend has been one based around 'cleaning out'. I know, I know, the word 'cleaning' isn't at the top of my vocab list, but 'cleaning out' certainly was this weekend (no laxatives involved, in case you are wondering, I am talking about something totally different, as you will soon see).

It's hard rubbish time - yay! Time to get rid of all the crap I have acccumulated over the past six months and see how many people view my trash, as their 'treasure'. This is the joy of hard rubbish time, it's not the feeling of satisfaction of cleaning out the shed (which I got majorly this time, as it had in fact been TWELVE months since I last got rid of the hard rubbish). The joy of hard rubbish time comes AFTER you put it all out on the nature strip, and see who comes around to pick through your total crap to find their little treasures to take home.

This is a big part of any kid's life, by the way. Doing the hard rubbish, then sitting at the window, just waiting for the vultures to come around, then saying to your parents in absolute amazement "What the HELL do they want with that?"

And now, in the age of social media, that same conversation is occuring, as we speak on at least one Facebook page:

"Someone took the lamps? What do they want THOSE for?"

"Don't know, probably desperate. Probably sell them for ten dollars at trash and treasure next weekend".

And here, then, is the conundrum.

If we KNOW that people are going to take our crap and actually make a PROFIT on it, why the blue blazes don't we do that OURSELVES????

Answer? We are lazy.

Well, I realise here that I speak for myself, as I know there are some of you out there who do actually do the ebay thing that I cannot be bothered with (and some make a nice little profit out of it too.) But I can't be bothered with that. Stuff it, they can have it for free if they feel like poking around in a pile of goodness knows what from a household they don't even know.

But I digress.

Scatters came over yesterday afternoon and we spent a couple of hours going through the crap that I'd collected over the past twelve months. Well, collected and then thrown out into the shed, waiting for that wonderful week that we know as 'Hard Rubbish Week' (which starts tomorrow here in downtown Moreland).

I couldn't have done it without him, we moved old desks and broken chairs, old cupboards and mattresses, an old air conditioner. God, it was empowering to get rid of all that crap.

The best bit was the sweeping up afterwards, and the great release of guilt that I have had for a while now that my father's beloved shed was becoming a pseudo rubbish dump. Not any more, he'd be relatively happy with the state it's in now I think. (Although he was one of those blokes who loved his shed so much that you could possibly have eaten off the floor, he swept it religiously and everything was in it's place, so he's probably still looking down from Heaven, shaking his head in despair.)

Then, early this morning I was up and cleaning the fish tank, which had come to resemble the ocean at the time of that massive oil spill two years or so ago. This cleaning effort was due wholly to Scatters, who walked in the door after not having been here for a while, and said in his blokey oh-so-observant tone "Jeez, the fish tank could do with a bit of a clean". It had been on my list for a while now, as the gunk and grime slowly built up over time, and the fish near on screamed at me every time I fed them "Heeeeelp, we are slowly suffocating in here!!!". The fact that someone commented on it kind of gave me that kick up the butt that you sometimes need to do these things.

And, once again, with the job complete, I felt a whole lot better about life in general.

The next cleanup I'll probably do will be the Facebook thing (as mentioned at the beginning of this post). I'm feeling a little overwhelmed with all the notification emails I keep getting, and although I have turned most of them off, I now have this urge to continually log on to see whether anyone has left me a comment. That's bad. It's a bit of a catch-22 situation really: the notification emails annoy the crap out of me, but without them I get paranoid that I might miss something. And quite frankly, it makes my brain hurt.

So, dear friend, feel free to pop your email addy in the box to the right if you feel like it. And feel free not to. I won't know any different.

Talk later

Janeane

x

Thirty Eight - the ultimate punishment

Too often as parents we find ourselves being slack with the whole 'negative consequences for negative behaviour' thing.

Well, at least I do.

I know, I sound horrible, especially in this day and age where smacking is being outlawed in some countries, that little clip on the backside for misbehaving in the supermarket because of the impact it may have on a child's psychological wellbeing.

Now, of course I am not advocating any form of child abuse here - of course there is a firm boundary to stick to when it comes to punishing your child. Don't misunderstand where this post is coming from, and please understand that I do not actually smack my Cherub.....anymore. He's too old for that, but I do admit to a whack on the bum during the terrible twos and the terrorist threes, mostly for things like biting/hitting me - the old 'see how that feels when I do it to you' routine (yeah yeah, I know there's some of you out there who don't agree with that, but I'm fairly sure there are more of us that have done it at least once in our life....and felt horrible about it....but have done it nevertheless).

A friend of mine used to do a little trick with her somewhat active sons while she was at the supermarket. If they played up while they were out, she would simply hold their hand, smile and give them a little pinch on the wrist, nothing too hard, but enough to let them know to 'behave themselves or else'. Then, when she got home, that's when she went ballistic. Her boys knew the 'pinch' was a sign that there was more to come and after a few episodes they realised the way it worked, and the 'pinch' wasn't required very often after that. And all the time she would keep smiling deleriously at the other shoppers, while her sons (I suspect), regretted their indiscretions for the rest of the shopping trip as they antipcipated the trip home in the car with dread. My friend didn't show any signs of guilt over this little trick when she was telling me about it, and her sons have now grown into quite stable young men, both at University and doing quite well socially and academically.

Of course, as a desperate mother of one very challenging child, I tried it out for myself (when my Cherub was about six or seven). Unfortunately it doesn't work with an autistic kid - they don't realise that they are being punished or given a warning when they get a little pinch on the wrist. They don't think "Jeez, I'd better settle down, she means business". No! They live in the moment, and scream out at the top of their voice "Stop pinching me!! You're hurting me!!", and you, the mother, come off looking worse that you would if you just let them throw themselves on the floor in a tanty and walk away. (I did that once, and an old lady went up to my Cherub as he was kicking and screaming, cooing at him "Are you alright Sweetheart?". I fair dinkum wanted to scream at HER and offer for him to live with her to see whether she was cooing at the end of a few days with him).

So that 'punishment' lasted once, never to be used again.

Lately my Cherub has taken to being verbally abusive....I mean REALLY bad. Think of the worst curse word you can, drop down to the one below it on the list, and there you have it. It rhymes with 'duck' (in case you hadn't figured it out yet). In the case of my Cherub, it is usually followed by the phrases "Hate YOU", "Stupid Idiot" - you get the picture - quite loudly at the top of his voice, no matter where we are.

Now, some of it I can put down to his autism, but he's old enough now to be able to at least understand that this is just not on, not to your mother, the woman that held you to her breast as a babe in arms and gave you nourishment. The woman that wiped your backside when you were a baby (and actually still does sometimes, let's be honest about this autism thing). The woman that will bare the stretchmarks for the rest of her life that you gave her as you grew inside of her.

Enough is enough.

But no matter what I did to try to deal with this abuse, nothing has seemed to work. And I myself have ended up in tears many a time at the fact that my own child can be so abusive.

Some people say that to get on a child's good side, to get them to do what you want them to, you need to find a good motivator, something they can strive for. Well, I'm out of them, and quite frankly, I'm sick of trying to go down the 'If you don't call me names or get abusive you will get a reward' track. That's ridiculous. I'll reward you if you don't treat me badly? Nah, not anymore - I will now punish you if you do treat me badly, because the expectation is that you will be nice to me.

Last night I had one of those lightbult moments, the ones where you think to yourself "Why didn't I think of this before?". I realised that there is one thing in this whole world that my Cherub hates the thought of more than anything, and it has now become the 'ultimate punishment' in our house, reserved especially for those verbally abusive or physical attacks on the Mother.

"You're scooping up the cat poop"

Well, you'd think that the world was going to end. He was climbing up the back of the couch screaming 'No!!!! Nooooo!!!! Anything but that!!!!! Nooooo, I'm not doing the poop scoop!!!!!"

Oh yes you are my boy.....oh yes you are.

And yes, he did. There was a lot of screaming and carrying on (and I helped him by holding the bag to put it in), but yes he did the poop scoop.

And he did it again tonight too, because as I said to him "If you can't think about the way your behaviour makes me feel, you're going to have to think about the effect it will have on you".

I'm hoping that it eventually sinks in - 'If I'm bad to Mum, it's the poop scoop for me'.

I have a list of things written up all over the house regarding behaviour, as visual reminders (apparently that works, but not in our house). I now have fantasies about being able to have a poster stuck to our fridge/loungeroom wall/back of the toilet door.....anywhere really. It would be in big, bold letters, and it would have my new slogan on it:

"If I treat Mum like s#!t, I'll have to scoop the s#!t."

It's simply put, it's clear and precise, it shows the action/consequence relationship. All the things that we're supposed to ensure we put into place with instructions for our autistic children.

Knowing my luck, we'll be at the supermarket, my Cherub will misbehave, I'll lean in and quietly say "Right, tonight you are scooping the poop" and at the top of his voice, in the same way he did about the pinching, he'll yell out "Nooooo!!! Don't make me clean up the s#$$$%%%t!!!!".

I get nervous just thinking about it really.

I'll let you know how it goes.

Janeane

Thirty Seven - Whoops I Did It Again

I've decided that my theme song just might be Brittany Spears' "Whoops I Did It Again". Not because I 'played with' someone's heart (as the lyrics go), but because I constantly seem to be doing stupid or questionable (such as 'have you lost your mind?' kind of questionable) things over and over again. Each time this happens, Brit appears before me, pointing her finger, wiggling her arse, sometimes she has hair, sometimes not, but always she's singing at me "Whoops I Did It Again", and she always has a devilish look on her face. Like she's enjoying the whole process.

Take this morning, for instance, when I got out of the shower, looked in the mirror and realised that this was yet another morning that I intended to wash my hair, and forgot - simply because I was watching the clock, frantic to get showered and ready before I got my Cherub up (read 'dragged him out of bed kicking and screaming') and ready for school.

As the oil from my hair almost literally drained away down my neck, in waltzed Brit, making a tsk tsk sound with her tongue, and following up with my theme song: "Whoops I Did It Agehhhn".

Close the front door without taking the house keys with me? "Whoops I Did It Agehhhn".

Stopped mid-sentence, forgotting completely what I was saying? "Whoops I Did It Agehhhn".

Referred to the cat by the Cherub's name and vice versa? "Whoops I Did It Agehhhn".

There comes Brit, in all her glory, following me around like some kind of creepy shadowy stalker, simply to rub it in when I mess up.....again.

And again.

And again.

And agehhhhn.

I am currently doing a liver cleansing detox (as those of you who have already read previous posts will know). I must say that I am going better on this than I thought I would. What I actually mean by that, is that I haven't COMPLETELY fallen off the wagon.

I had expected by now that I would have been very much over the healthy eating plan, but no, I am still plugging along, albeit at a lesser pace than I took it for the first two weeks. These were the weeks when I was almost obsessive about what I ate (or didn't), what I drank (or didn't), when I used the toilet for number ones (get out the book, write it down), or number twos (get out the book, write it down)....you get my drift.

What I realised was that I felt sooooo much better with my new eating plan, that it was something that I want to continue pretty much forever, so I am in fact still juicing every morning (and we're talking carrot, cucumber, broccoli, beetroot, kale, celery - none of which is mixed with citrus because that causes the enzymes to break down. Good, ain't I?) and still eating wholesome, raw food in the main. BUT....I am now having a few coffees each day (was ready to go postal without my caffeine fix) and am also having meat for dinner. And, once a week I have my 'breakout' meal, where I don't worry whether it's cooked or not, greasy or not, good for me or not!

But this is where I stop myself - one breakout meal a week, the rest 'mostly good'. I do feel better for it, and am quite proud of myself.

But, of course, every now and then one does indeed fall completely off the wagon. This was the case for me last week when I was on a week's holiday, and had a few days away with Glenn and my Cherub. Healthy eating? Screw that. No wine? Screw that even further. I was living it up with bakery treats each day, wine at night, roast meat/sausages on the barby for dinner, gravy, DESSERT - you name it, if I could find it, I ate it. And I didn't give a rat's razoo what it was.

And that's where that bitch Brit comes back into the story. Because when I first fell off the wagon while I was away, and was tucking into the pre-dinner nibblies of crackers and dips, that little cow came walking into the kitchen and stood by my table wriggling her arse and singing "Whoops I Did It Agehhhn". What a bitch. Not even letting me enjoy my time away from the day to day boring life (and food) that is my reality. Not even letting me just relax a little. She had to be there, rubbing it in, making me feel like I'd messed up yet "agehhhhn".

Thankfully, Joe Dolce followed close behind her, gave her a slap and said "Ah Shaddup Your Face!".

Hooray for Joe, that's all I can say.

Talk later

Janeane

Thirty Six - The Wedding

When I was a child
I was taught many things;
Show respect, blow your nose, wipe your chin.
And when a wedding's in Church
It's a sign of respect
To stand up when the bride walks in.

In this day and age
A church isn't a venue
That couples always pick to use.
There are gardens, and restaurants
And hot air balloons
And beaches where nobody wears shoes.

But I recently went to a wedding
In Church
Where the congregation celebrated
The joining of two people
Who love one another
And that day were 'officially mated'.

We were all sitting there
Checking watches - and at last
The bride entered in all of her glory.
I prepared to stand up
As a sign of respect
But the truth was a much different story.

It appeared that nobody
Had the same thought as me
As we shared that same day so complete.
Not one of those there
Not family, nor friends
Had decided to rise from their seat.

They stood for the hymns
And they stood for the prayers
Through sermons of Love (and of sin).
But I missed most of that
As I pondered just why
No-one stood when the bride walked in.

As we move through the Ages
We celebrate marriage
In many and multitude ways.
As far as the cost
(And these days it is huge)
There's conjecture on who actually pays!

Sometimes no white dress
No vows to obey
(I am glad that one got pushed aside).
But is the case now
That we don't show respect?
Do we no longer stand for the bride?

This tradition can't die!
If you're ever in Church
Sharing in a new life to begin.
Take the time, show respect;
On her one special day
Please stand up when the bride walks in.

Thirty Five - Detox update

Well, here I am on day four of the Liver detox, eating healthy food, drinking healthy veggie juices (home made now) and feeling pretty good.

I manage to get through my whole work day without a coffee (but still allow myself that one cup when I get home from work), drinking LOTS of water with lemon in it (both hot and cold), and doing alright in general really.

I am sleeping better, AND when I wake up in the mornings, I am not feeling sluggish or like I want to sleep for about six hours more.

I feel 'lighter', and although I am still suffering from some of that yucky abdo bloating that I get daily, it is nowhere near as bad, it has subsided significantly, and I am hopeful that it will one day be gone for good.

The food is quite good really - not hard to eat at all, the preparation takes a little longer than usual, but with a fridge full of fresh fruit and veg, it's at least all on hand, and I have found myself actually enjoying the food preparation because I know that what I am eating is actually good for me.

I have made one decision, however, and that is that Friday nights will be my 'break out' night. No, I won't be gorging myself on fish and chips or McDonalds, but I WILL be eating stuff that isn't exactly liver friendly. I figure that one meal a week won't kill me, but will probably in fact save me from giving up, because although I am doing OK, I do think that eating like this without a special treat would be a hard slog, and something that I wouldn't stick to. So tomorrow night I will be dining out with Scatters at the local pub - I am looking forward to some pork belly (specialty at The Union), but I do wonder whether I will be able to eat it all, as I think my stomach may be getting used to smaller quantities of natural, non fatty stuff.

My juicer arrived on Tuesday, as did my organic fruit and veg from the online organic shop mentioned in my previous blog. It was lovely to receive some nice, fresh produce (albeit a little expensive), and I have made a pledge to myself that I will continue with this as part of my detox. I think from now on I will buy their box of seasonal fruit and veg, I think that will work out better financially, and I feel that I now know the book well enough to be able to accommodate whatever they have put into the box (although I may need to ask them to substitute the spuds, you can't really have too many of those).

Yesterday I made my first juice - a mixture of carrot, broccoli, pineapple, grapefruit, apple and orange. I downed some after I made it, and kept the rest in the fridge for this morning.

Today my juice consisted of carrot, broccoli, pineapple, apple, orange, cateloupe and beetroot! It came out a beautiful deep pink colour (should have taken a photo!), and tasted just lovely. I'm actually looking forward to my veggie juice brekky tomorrow.

What have I learned so far?

Well, to start with, this natural food thing isn't that bad.

Secondly, tahini tastes best with a little bit of raw honey added (otherwise it can be a tad bitter).

Thirdly, the world doesn't end if you don't drink copious amounts of coffee (in fact, it feels less stressful - I haven't felt anywhere near as manic or stressed out this week).

Fourth, white tea is OK.

Fifth, hot water with lemon in it is OK - doesn't take long to get used to, and you can still share in the social moment of a 'coffee' at work.

And finally (and this is the most important thing I have learned so far) - one should never...NEVER...grate beetroot while still wearing one's work shirt.

Talk later

Janeane
x

Thirty Four - my detox experience

Having had enough of feeling like absolute crap (tired to the point of exhaustion, recurring anaemia problems, heart palpitations, tummy troubles,grumpiness, less-than-clear thinking amongst other things), I have decided that it's time for a detox.

Many years ago, when the Liver Cleansing Diet was at it's height of popularity, I undertook the experience of cleansing the ol' liver, and it actually did do me a bit of good. It's an eight week program, essentially eating as much unprocessed food as possible (in terms of it's availability, NOT eating as much as you possibly can!), cutting out the nasties such as coffee etc, and basically being kind to your liver to enable it to work better.

When I did the Liver Cleanser many years ago, I lasted four weeks.

This time around I intend to go the full yards.

So, today was my first day.

Started the day with a glass of water with lemon in it, followed by a glass of veggie juice. At the moment I am using V8 juice, which I purchased from the supermarket, however today my new juicer arrived, so from tomorrow onwards it's the real deal for me.

After the juice (and a break to have a shower) I got out the vitamiser (now there's a word you don't hear often these days!) to make the soy milk smoothie with strawberries, banana, pineapple and the magic mix - LSA (which stands for Linseed, Sunflower and Almonds - this is a high protein mix).

By the time I got half way through I was full, so I popped it into a container to drink at work during the morning. Which I did. Easily over time.

For snacks I had some raisins and some dried apricots - all good. Was coping 'OK' without the coffee, and drinking lots of water. Had a white tea when I would normally have had a coffee.

Was VERY proud of myself for not going NEAR the biscuit tin at work all day.

The water was obviously doing its job, as I spent a large amount of my time today in the Ladies room. Everytime I had to get up and 'go', I said to myself 'This is good, things are working, this is good.'

But then, at around 11am, the tummy rumbling started....and I don't mean from hunger.

'Whoa Nelly!!' my innards were very obviously saying to me. "WTF is going on HERE????"

They showed me their annoyance at being treated 'well' by grumbling at me, starting off softly, and gradually getting louder and louder. I could hear them getting together, saying "What has this BIATCH done to us today??", and just to get back at me, they decided to band together and twine themselves into such disarray that the pain was near on unbearable.

The embarrassment at having to continually head off in the direction of the bathroom was nothing compared to the pain I was in. Lunchtime came and went, there was NO eating for me, as I felt nauseated as well.

Hmmmm.....not sure whether this detox thing is working afterall.

Still, I comforted myself with the notion that this was possibly a reaction to my liver being in SUCH BAD REPAIR, that this was in fact a 'natural' reaction.

That comfort was only minimal, however, when an hour before hometime I decided to call it quits at the office and head on home (I hadn't managed a lunch hour due to being very busy today anyway). Yep, head on home to do whatever it took to make the excruciating pain go away.

Which was, in fact, to let go a few massive bottom belches - it was surprising how much relief I actually felt once this little act of agression had been carried out.

Still in a fair amount of pain, however, I haven't managed (or wanted) to eat any dinner, but have instead just had a couple of drinks of water with the lemon slices in it that are highly recommended as being very good for cleaning the liver out.

My juicer arrived at work today (did I already mention that, I am very excited), and my lovely organic fruit and vegies will arrive at work tomorrow, for me to take home and juice/combine into some lovely liver friendly concoctions. (by the way, I got my organics from Victoria Organic Delivery, my first time ordering anything Organic, let alone ONLINE, so I am pretty excited to see what arrives in my little box of goodies tomorrow. I am particularly looking forward to the cauliflower and broccoli, as one of the meals I'm having this week is a cauliflower and broccoli salad, a new taste sensation for me).

However, after day one of my detox, as I sit here and write my blog, I am now feeling a little less agonised by pain, having no doubt relaxed just a little because I'm at home, in the security of my own space and can fart whenever I damn well want to.

So, what have I learned so far?

1) When the instruction book says (and I'm paraphrasing here) that you can 'eat as much of the food as you like, because it's not the quantity, it's the quality that matters', this DOES NOT mean that you should 'prepare' for being hungry by eating heaps and heaps of whatever it is that you are having that day. Most likely, as this is pure unadulterated (mostly), raw food, it's going to make you feel great pain - and fart like Hec.

2) When the instruction book says (and again I'm paraphrasing) that you should 'stop eating when you are no longer hungry', it's probably a good idea to follow that instruction fairly closely.

3) I am my father's daughter, and find it hard to fart in any place other than the privacy of my own home/water closet. Not that I'm advocating breaking wind in public whenever and wherever you want to, however there are probably some discreet ways of doing this such as "I'm just going for a short walk to get some fresh air" or whatever. Today I even tried the 'out there' approach, by telling one of my colleagues that if I suggested she walk a few paces 'that way', it was probably because I was going to let one rip - even the 'up front and honest' approach didn't work for me, and the pain continued.

4) One should not go 'gung ho' at these things. Tomorrow, for example, I shall take it a little easier on the shake, may not even have one, and will lay up on the dried fruits as well. Might give the liver/stomach/bowels the rest they deserve after having been through such a tummultuous day.

5) I'm committed to this thing - despite the fact that I was in such pain, I now know that if I take it a little easier tomorrow, I will still be detoxing as I have intended, and I am in no way in a mindset to give it up. If I'm willing to continue tomorrow after today, then I'm obviously in for the long haul.

Do I feel any better today than I did yesterday? God yes, because I have stuck it out, even just for one day, knowing that tomorrow will be that little bit easier, and in the long run I will feel like a million dollars.

Or maybe a thousand dollars.

Or maybe one hundred.

Whatever, I'm sure that my physical reactions today have been normal for someone on this journey, and I'm not put off at all. But we shall see what tomorrow holds, shall we?

I'll let you know

Janeane
PS: I have caved in and had ONE cup of coffee this evening, but I have NOT eaten anything contraband, and I will not be eating anything after 6pm - did you know that your liver does its best work between 10pm and 2am? Well, I'm going to give it its best chance tonight.

Thirty Three - I won't let this ruin my life!!

Sometimes I find myself thinking about the challenges I face with a child on the autism spectrum, and I think to myself "I won't let this ruin my life!", with a grumpy, self pitying feeling inside, sometimes followed by a 'why me?' tinge deep in my soul. Previous posts will testify that sometimes I feel the need to vent these feelings, and yes, it does help to get it all out.

This week, being school holidays, I have been working from home (to a degree). Childcare costs me $100 a day, due to the fact that I can't just leave my Cherub 'with anybody', it has to be someone that knows him, knows his triggers, and can deal with issues if they arise. The fact that he also has epilepsy means that whoever is looking after him has the known added responsibility of a seizure happening at any given time (even though this is rare, it is always a possibility).

So, if I'm forking out for childcare during the school hols, I might as well not be working quite frankly. The summer holidays are also notoriously hard to find the people that I need to care for my Cherub, because most of them are on holidays themselves.

So, this time around I managed with the good grace and support of my workplace, to utilise technology and work from home. It's been easy to do, as I can connect to the database from home, still access emails, use my phone to call around the network to chase things up etc etc. The ONLY thing that I can't do is be there to answer the phone for the team so that they don't get interrupted.

Day one was interesting, I spent the whole day working from home, got heaps done, felt in control - until a tiny thing went awry, and I fell into a feeling of guilt that I was letting the team down. Undoubtedly, if I had been AT work, this wouldn't have happened. It wasn't a big deal, but it did highlight to me that maybe this working from home thing isn't quite what I thought it would be.

I should note here that for 18 months in a previous role I worked from home (as did my colleagues at the company that I worked for), and I suspect that I thought that it would all pan out as successfully as it did that time. However, what I have come to realise is that when EVERYBODY works from home, we all know 'the rules' - good communication, having a workspace at home that is your little office, acting just like we are all in the same place etc etc. Not a time to do your washing or cook the dinner for example (although it IS easy to do this on your lunch hour when you work from home, I must say).

But when only one person is working from home, and that person (me) has a set idea of how it will work, and it doesn't because we are not all on the exact same page.....well, it leads to a feeling of being a little out of the loop. This isn't a criticism of the other staff members of my team, it's just that we as a team are not used to one person being off site, so it gets a bit tricky. Or at least it feels like it does. As a result, I felt 'guilty' after one day, felt like I was letting the team down, like I wasn't supporting them as I should etc.

So, after day one I decided that I wasn't going to be working from home for the full days, that I would in fact go on site for the mornings, take my Cherub with me, sit him down with drawing materials, his DS, DVDs (there is a great telly at work) and a copious amount of sugar laden treats and do the majority of work from the office, working from home only for the afternoons (which in my job is the 'quieter' time of day when phone calls are not usually for me anyway).

First day of this went fine.

Second day of this went fine.

Third day of this did not go fine.

I was obviously being a bit selfish, trying to be all things to all people so that I didn't feel like I was letting anyone down (including myself, as I would prefer not to pay the $$ for childcare if I can avoid it, being a single mum and all that --note to babysitters if you are reading this: no, I will still be paying you, see reasons above, don't even offer freebies, you do a lot for me and my Cherub and you know that).

In my selfishness, I failed to assess the impact this chopping and changing might have on my Cherub, and yesterday showed me exactly how far I had pushed him. He did very well lasting as long as he did, but then something happened (I'm still not sure exactly what, as he has found it hard to explain completely, but it had something to do with a spider), and he lost the plot.

He ended up screaming and crying and hiding under the table in the staff room to be exact. Two staff members were leaving the room with looks of dismay on their faces as I ran to see what had happened, and there was my Cherub going completely off his nut, bum in the air and the rest of him under the table.

I managed to get him out and talk him (mostly) down, and it was very soon after this that we left for the day. Thankfully, the lovely AG, who has an autistic child, stood right by my side as I tried to bring my Cherub down from the eleveated state that he was in, so I had some support there at a time when I myself was feeling like the world was about to end and I should quit my job and just focus on my Cherub, because I need to put him (not me or my job) first, as I so obviously had not done this week - nothing like seeing your child screaming and hiding under the table to give you that slap in the face to say "You've not thought about him here, you selfish woman".

But then came the self pity. It didn't last too long, but it was there nevertheless.

And then came the defiance. "I WON'T LET THIS RUIN MY LIFE!!" I thought to myself as I sat at home looking at the computer, doing what I could but at the same time trying to deal with the outbursts from my Cherub, who was still coming down from his elevated state for the rest of the afternoon, then going up again, then coming down again, then going up again.....you get the picture.

Then I realised how stupid the "I won't let this ruin my life" thoughts are.

The very structure of that thought indicates that my Cherub is separate to my 'life', that he is some kind of outside influence that can or cannot push my 'life' one way or another.

My Cherub is a part of my life - part of my life is dealing with a kid with autism, whether I like it or not, and putting into place strategies that make our life as easy as possible. How dare I think of him as someone or something that can 'ruin my life'!!!! No no no no no!!!

I embrace him for the wonderful gift that he is.

Yes it's hard, yes it's difficult, but suck it up Lovey, just suck it up.

I have sourced a babysitter for a couple of days during the next week that I have my Cherub (I am sharing weeks with his father - who doesn't actually HAVE a job by the way - did I just say that out loud??), it's the best I could do, but it will take a bit of pressure off. (It will be very hard to take him back to the office now, he will hold on to that anxiety that he felt yesterday and is likely to elevate again - this I have learned from experience). On those days I will go into the office and work from there, and won't be letting anyone down.

On the other days I have decided that I will not try to be all things to everyone, I will simply do my best and work from home. There are only three days now that this will need to happen. I will go to the office to transfer files that I will need to transfer, but we will only be there to do that and nothing else. The rest I can do from home.

I will start putting a little extra money away each pay so that I can afford the babysitters when the time comes for the next school holidays. I will go the boy scout route and I will 'be prepared'.

There is no need for my Cherub's autism to 'ruin my life' - it is a part of my life, and I will work around it.

Talk later

Janeane
x

Thirty Two - Losing part of my childhood

This hot weather has got me to thinking about my childhood, and the recent loss of one of its pleasures.

As you know, I am currently living in the family home as a result of the passing of my father three years ago and a condition of his will being that my Cherub and I live here for ten years to get back on our feet financially.

For the past three summers, I have lived as I did when I was growing up in this house, and living through those Melbourne summers where we'd have three or four consecutive days of 40+ degrees.....and no air conditioning.

My parents were very anti air conditioning, their reasons on the surface were the expense and what I call the 'having a pool in Melbourne' mindset - you buy one and then use it for such a small portion of the year that it's hardly worth having. Of course, in relation to air con, this mindset extends further to become 'you buy one, and then use it for such a small portion of the year AND it costs a fortune to run, so it's hardly worth having'.

I suspect, however, that underneath it all was a realisation that having air con takes away one of life's great pleasures, and having recently had air con installed here to help cope with the heat, I am myself now missing the same life pleasure.

My parents were not big beach people. To them the beach was for throwing in a line to catch some fish, not necessarily for having a swim. So, unlike many of my childhood friends, my summers were not spent in a caravan at the beach, making the long trek to places like Rosebud, Rye or Torquay (and in the seventies and eighties, particularly because I never got to go there, these places did hold a certain place in my imagination as a place of fun, sea, sand, surf and small amounts of envy of the friends that made the annual summer trek to these places).

My summers were spent at home (parents usually working), often on my own, watching the cricket on the television, sweltering it out in our concrete/fibro commission home in downtown Fawkner, with only a couple of fans to see me through. Later, in the eighties, as part of a minor renovation, we had ceiling fans installed in the loungeroom and main bedrooms. (Apparently they turn both ways, depending on what way you turn the switch, thereby allowing them to push the warm air from the gas heater down through the room during winter - but I have never been able to work out which way is which).

What we came to discover (and what many people with ceiling fans will also attest to), is that the fans work well when you first turn them on, but after consecutive days of hot weather, they really only circulate the already hot air inside.

This is the time that a bit of enterprise is required - jumping in the shower every hour, not drying off, putting minimal amounts of clothing on, and sitting directly under the fans works a treat, and is something I learned to do growing up and have since taught my Cherub.

But, while I never got to experience the 'joys' of the beachside holiday, I had my own personal childhood special moments during the summer. This was in the evening, when the temperature outside would drop significantly, and we would open every door and window in the house to let the cool breeze flow through.

As the hot afternoon turned to evening, I would pop my head out of our dark house (all curtains closed to keep as cool as possible) to see whether the 'cool' had arrived. Once it did, I'd tell Mum, and around we would go, opening everything up. Then, it was outside with a cool drink of water, on the back or front step, simply sucking up the relief of the cool breeze.

It was especially beautiful when a cool change with rain came through - I would run out and let the rain soak through my hair and my clothes to help my body temperature lower and the relief ride over me.

These cool changes, especially after a run of several hot days, were the only time that I saw my mother be 'un-ladylike'. Many people would not believe this of her, but once that cool change came through, and her jobs for the day were done, she would crack open a cold beer (always poured into a glass), and sit on the back steps in a pose that you would only think a man would make (elbow on knee, legs sprawled out all over the place) and gently savour that amber fluid as she spent her own time enjoying the change in the weather.

It was a special feeling to be able to sit by our front door or loungeroom windows and just feel that cool change on my face. Quite frankly, it almost made the horror of the hot weather disappear from memory, and I knew that finally I would be getting a good night's sleep.

Now, with the air conditioning installed, this feeling is at risk of being lost. I'm very grateful, of course, for not having to withstand another summer of sweltering in this concrete palace of mine, but something inside of me thinks that maybe, just maybe, this was another reason that my parents were so hesitant to put air con into our house - they were wise enough to know that with the installation of the technology, came a loss of a childhood memory that maybe they just didn't want to lose, and possibly even wanted us to experience for ourselves.

Well, I shall romaticise it that way anyway.

And I will also admit to turning the air con off a little earlier than needed yesterday, letting the house warm up just a tad, and opening up the windows and doors to let the breeze be pushed through by the ceiling fans when the time was right. It wasn't the same, but I guess it was close enough.