Friday, May 28, 2010

You're Fired!


After yesterday's somewhat complicated post with a window into my sometimes fragile psyche I thought I'd wipe the tears away and tell a story today instead....  Today has been a much more positive day and I, for one am ready for a few laughs again.

I mentioned in yesterday's post that I'd been busy putting out fires around here and I hinted at telling of that literal adventure in an upcoming post.  Well today is as good a day as any to fill you in on the fires always 10 seconds away from my turned back in this house of organised chaos.

For those who read along on this blog you already know life in my house is always an adventure with a child on the Autism Spectrum.  I remember a line in that hokey Arnold Schwarzeneger film, Kindergarten Cop that warned the barely believable and terribly acted undercover cop to never every turn his back on his Kindergarten Class because it was like turning your back on the ocean.  The consequences would be BAD!

I recently saw that film again (I'm a bit of a nightowl and quite often as I tap away on various projects, work and bits and pieces, I have the TV on and usually it is simply for white noise and the shows keeping me company are generally quite rubbish).  I watched the scene where poor old Arnie did turn his back on his class and when he returned it was a disaster.

I sat there and laughed along and thought to myself,  "Wow!!!  That class of 30 kids has NOTHING on my two boys!"

Children with ASD sometimes have no sense of danger and most (well at least my two) are extremely impulsive.  This impulsiveness and lack or awareness is related to their lack of executive functioning which is really well explained at a friend of mine's blog, (see here).

We live in a house full of locks, safety gates, barriers, alarms and various other safety measures so our kids can basically get through a day without injury (or worse).  Think about all the things you had as safety measures when your children were little babies and then multiply it by about a thousand and you have an idea of the level of lock and key my house is under at all times.  My kids have managed to work out most of my incredibly complicated security measures and have escaped the house in the past including a very scary incident when my Mum was looking after my oldest son. He managed to get out of the locked back door, over a specially constructed gate on our back balcony, and over our fence (which is chicken wired to avoid having easy climbing access with handy foot holes) leading him straight to a main road upon which buses and trucks power along around the blind spot just adjacent to our driveway. This was exactly where he was headed by the time my mother who has arthritic fingures and a recently replaced artifical hip had managed to unlock all the doors and gates J had somehow magically by passed Houdini style. 

We stepped up the security again after that incident.

So you get the idea that a loo break around these here parts is a dangerous undertaking as you simply never know what will transpire whilst you are relieving yourself....

About a week ago I was doing my usual dinner time routine and had cut way too many peices of bread to make into toast for the boys who always eat toast with every meal as it is their chosen food fad.

The boys appeared to have finished and I left a peice of uncooked bread in the toaster (first mistake) thinking to myself that I would pop it down and cook it if, when I get back the boys want more.  I dashed to the loo and no disasters that I could hear were going on so I thought, "Oh why not run the bath and grab the pyjamas whilst things are quiet?" (Mistake number two).

I think I'd been gone around five minutes when I trotted back down the hall feeling quite chuffed that the house was still intact and the boys had not even had a scuffle in my brief absence. 

Interception..... My four year old hyper verbal and very literal little boy magically appears in my path (after jumping over the safety gate in the kitchen entrance Olympic hurdle style).  "STOP Mummy!!!  The toast is fired, the toast is fired, THE TOAST IS FIRED!!!"

I would love to say I calmly entered the kitchen from whence my paicked child came and quietly assessed the situation but I do believe I may have sworn and then also hurdled the safety gate (why oh why do we bother??  They keep no one out of the places they are not supposed to be and really only slow all of us down over the day). 

The toast was indeed fired.  The whole toaster was actually on fire.  Again, I would like to say I calmly pulled our handy fire extinguisher from an easy to reach place and simply put that fire out but I did not.  I swore some more and contemplated that I do not know the difference between electrical fires, chemical fires or any kind of fire and I had no freaking idea on how to put this baby out and we do not have a fire extinguisher (which in hindsight is totally daft when considering the potential for disaster in this house on a daily basis).  In possibly the most stupid move of my life I ripped the burning electrical appliance from the wall it was plugged into and may have dropped another swear word as I flung it into the sink full of dishwater.

The fire went out and my heartrate returned to semi normal and I think I realised I was in some strange mother trance as I came out of it and heard my J yelling, "I'm so sorry I fired the toast Mummy!  I'm so sorry I fired the toast Mummy" on repeat which went on for a good three minutes and no amount of consoling could stop.  J has popped that piece of toast down whilst I was happily wandering about the house feeling so smug about a disaster free five minutes and he had then become distracted with an episode of Dora on TV.

The boys were reciting the episode verbatim as they do whilst I was in oblivious smugdom, each participating in their designated parts that they somehow agreed upon without discussion or arguments.  J was doing the parts of Dora and Boots and H was doing Swiper the Fox.

Obviously the episode was interupted when Jackson discovered the toast being "fired" after it got stuck and failed to pop back up, hence flames and panic.

J was so distressed about his part in the fire that he had forgotten the Dora episode completely but H had quietly pulled a chair over to the kitchen safety gate amidst the chaos, flames and noise.  He proudly stood upon it and bellowed from atop, "You'll never find your toaster NOW J Ha ha ha ha!"  He then immediately fell out of Swiper character and said, "Mummy! Be careful, you're fired!"

I surveyed the fizzled out scene, turned the screeching smoke alarm off (which went of rather late in the proceedings I might add), started breathing again and burst out laughing (perhaps in post panic hysteria). 

The kids had their bath, the safety gates are still up and stopping nobody from entering unsafe areas and I have yet to replace that "fired" toaster so I am inconveniently using the grill and swearing each time I do so.

We really were and for the most part ARE lucky.

My point?  Oh I don't have one really.  Maybe just that even when unexpected panic (or any unwanted emotion) enters your life and even in the face of fear and potential disaster life aint so bad for the most part and can be a bit of a laugh too.  Focus on what's truly important.

Oh..... And make sure you have a fire extinguisher in your home with an emergency plan... Just in case.


Wednesday, May 26, 2010

Before and After




Here's my view as I write this post......  The horizon.

It's quite symbolic as I look towards brighter horizons actually.

To bring the reader up to speed with events gone by from previous posts I promised to update about...  The Wiggles concert was a total hit with my H, the local show I talked about in a previous post that we were attempting with the boys combined with ferris wheels, animal rides and showbags was also a successful family day out, we have meetings to start J's school transition booked and things look fairly promising with regards to that.  BUT......  both boys anxiety, meltdowns and challenging behaviours have increased over the last few weeks and I think it could be a case of my energy being transferred onto them if I am honest with myself.

I have not had much creative time of late as I've been too busy putting out fires in our everyday life here at home, working and feeling a bit blue.  (The putting out fires is quite literal but it's a long story best saved for another, more light hearted post).

I've been asked to participate in some wonderful opportunities to raise the voice of families living with autism which via speaking engagements that I should probably (and briefly did) feel incredibly proud about.

I have also been given the gift of a makeover on national television (see here) and I should really be looking forward to it as I rarely do anything for myself and cannot remember when I even bought anything just for me so to have someone buy me some clothes and help me with some styling issues is very welcome.  I am feeling low though that I am neither currently proud of being asked to speak nor am I looking forward to being publicly made over as I have allowed myself to buy into negativity that may or may not be intentionally being sent my way.  I accept that letting negativity in is actually my own choice though and I am working to fix this.  The makeover might be just a superficial pick me up to some but it is deeper for me than clothes I now realise.

This post can be considered my "BEFORE" picture if you like.  It's not a picture of the literal sense it's more of a picture or insight via my written thoughts and words into why I felt I needed to apply for an opportunity to even have an "AFTER" picture for myself.  This Before picture gives you the info about the place I was in when writing my tentative email to receive the makeover.  So trivial in the grand scheme of things and nothing like what I would ever normally put myself up for.

So here is my "BEFORE" in all it's truthful, honest and possibly pitiful glory.......

I am a completely different shape and size (and person really) than before I had children.  Since I have had children I've been caught up in a whirlwind of family dramas and turmoil that eventuated in two autism diagnoses among other things including health issues and weight gain but confidence, friendship and certain freedom loss.  I have had no idea as to what suits me anymore and no time to even care about what I look like.  I have no real interests anymore aside from my boys and their futures. 

I barely have time to catch up with friends and when I do all I can think about is what autism related therapy I need to be thinking about next and it's probably all I talk about too.  I know some friends are avoiding asking me to catch ups. It is devastating when I know that my company is so draining for some friends they would simply rather keep the catch up secret than invite me and endure an hour with me, my anxiety and my one track conversation.  Of course they don't tell me this is the case.  I assume that is to spare my feelings but I can read between the lines...... Or maybe I am in a low spot and simply misunderstand.  I don't know and simply hope I am wrong in honesty.

Whilst on this "BEFORE" and honest track....  I often pretend I don't care what people think of me.  I pretend I don't care about a lot of things.  I sometimes do though. Who in honesty doesn't?

I'm sure the fact that I care about my boys' outcomes is obvious.  The fact I care about autism awareness is certainly obvious too as it's related to how much I care about those beautiful boys.  That's about it though that would be obvious to most.  I don't have a life outside this strange but oh so interesting little world so I am unpractised in the ways of the outside world these days so it's difficult to be feeling excluded from that little world too.

I've lost some connections in the autism world recently. Those broken connections seem more difficult to understand than being excluded from the "old world" of typicality I once lived in I think as those in my ASD world would know how it feels to feel excluded.  It was one of those things I pretended I didn't care about too.  I do though. That is quite difficult to admit.

I once pondered that if we are all in the same boat why must we constantly muddy each others waters and create unnecessary waves?  Surely we should all be grabbing an oar and getting on with the job of paddling to safety together, handing each other a life jacket and sometimes riding out the stormy waters together.....?

Everything I do with regards to raising autism awareness is about my boys and the friends I've been blessed enough to find in this world.  Nothing I do with regards to autism awareness is to do with my ego. It's ironic if it's perceived this way considering what I have disclosed here (and to many of the people swimming along in these muddy waters at one time or another) about my low self esteem.  Ego?  What ego?  Anyone with self esteem low enough to care that someone has misjudged her has no ego. 

I just want to get on with the business of raising my boys to be confident about who they are. That's a bit difficult though if my own confidence is less than zero in the "BEFORE" honesty (yep again with the "BEFORE" and the honesty).

I might be preaching confidence to the boys but I am sure not practising it at the moment.

I don't know who I am outside of autism anymore.  I wrote this in my application to have that makeover.  I really don't know what else is out there in the typical world that I don't live in anymore.  I exist within ASD to be closer to my children who live on the spectrum.  I try and live within the spectrum and see from within it's perspective as often as I can so I can understand my babies and help the rest of the world understand them too.  Yes I want to help them and that was my original motivation to become involved with raising awareness.  Personal experience is something that will always be your motivation to get involved in a world where awareness is so sadly lacking and help for our kids is so scant.  Isn't it about time we just welcomed all help and supported each other in the way we want our kids supported? The only agenda I have is to help raise awareness for autism (and also families living with other special needs actually).  I'm in a position to do that through experience and empathy.  Some appreciate it.

Regardless of how your brand of support is best offered, we are all different and possess different strengths.
Sometimes, if well supported, difference can be wonderful and combining our different approaches can get a job done much better than going it alone and not sharing the hardships.

This is what I'm desperately preaching to my own children? Difference can be a strength. Show people what you CAN do and ask for assistance on the things you are still learning about or need a hand with and put that same hand up when you feel low.

Why am I so open?  Why do I write about this?  Why would anyone be so willing to openly admit they feel low and excluded sometimes?  Because my honesty and openness might ring true for another person feeling low today too.  If there are people reading along who gain no comfort from shared experience or the expression of ideas then this honesty would be of no use to them and that's ok.  I do believe it might be of help to some though, including me through expressing it.  I'm also so open here because it's my way of talking to others.  I've used the word isolation when discussing families living with ASD before.  This is my way of showing and sharing isolation by seeking conversation and connection.

I guess I'm now getting into where I want to be for the "AFTER" .....

I am no longer interested in answering to negativity or letting myself feel that it's ok to put up with feeling less worthy to have an independantly thinking brain and voice.  My willingness to continue letting that in is even further below zero than my confidence.  I'm letting go of hard feelings (yep, I admit to having had them).  They are not worth it and they are sapping my already low confidence to the point that I have changed who I am lately to NOT feel proud of any of my endeavours.  I have devalued myself and my work because of some "chinese whispers."

After allowing myself to buy into it all, I didn't feel proud of anything I've done to help raise awareness.  I just felt small, worthless and as though I should hide my accomplishments and actions to avoid judgement.  I am so terrified my boys may one day feel excluded, worthless and small. It's agony.  Judgement is something ASD families unfortunately learn to live with even though we hate it and sometimes we see judgement where there may not even be any due to being on the defensive just in case.  It's a catch 22 and I have been totally sucked into it of late.  That's why I've been so quiet over here.

I forgot that when you put yourself out there, not everyone will ever approve and not everyone will like you. I forgot that that's ok.  Everyone is different.  Isn't that the point I try and get accross for my boys?  It's ok to think differently even if you are a grown up just doing your best and sometimes feel lost.  Our kids must feel lost a lot as children trying to navigate a world they are differently wired to deal with.  It's not a nice feeling at all to feel lost or small.  It makes me sad but determined to listen to those in my life who are behind me and if I listen hard enough seems to be a whole lot more people than those who are not.

I forgot that what I am trying to teach my boys is a good lesson for everyone whether living in the ASD world or not.  We are what we are and what we are is probably flawed but that's soooo ok.

I have not been listening to my family who are proud of me, my friends who are proud of me and any of the people who thought enough of what I have to say to ask me to participate in any of these events.  I'm going to start listening to them again though.  This is how isolation can be turned from defensiveness into reconnection with the world outside of the catch 22.  To listen and to let some sun in, as a friend of mine who's inspired me to remember that I do NOT have to be perfect because I am already perfectly me...  Yes, a fellow mummy with a very sunny attitude who preaches AND practises being positive and being proud to be yourself (Sunny Mummy) has helped me remember it's perfectly ok to be who I am and remember to shine.  The perfect "AFTER" outcome.  Some nice new clothes, a bit of pampering and a more open attitude to positive over negative.

I'm hoping this physical makeover will help build my emotional confidence up enough to rally for my boys again and resume fighting for them so my energy will be transferring onto them in a much more positive way too and allowing the sun to shine upon their pretty heads.

Isolation, honesty and hurt. Sounds like a big "poor me" even to myself.  I might well be criticised for this post but in honesty I'd rather be criticised for who am am than who I am not.

It would be nice if we lived in a perfect world.  We don't live in that world though so I accept it's not within my control to change people's perceptions.  We do live in a world where you are in control of your own actions and perceptions though.  If I can talk the talk for my boys, I had better start walking the walk.

Speaking of walks, I'd best try and go for a walk to help me shift some of that unwanted physical weight along with the emotional weight I've been unnecessarily carrying of late.........

Who knows what the "AFTER" will really look or feel like?  Hopefully it's more attractive in that positive sense than my current "BEFORE" but only time, some hard work from me and the makeover people will tell.  It's not about feeling beautiful on the outside for me.  I want to feel beuatiful on the inside again I want to grasp onto seeing the inner beauty in me that I can clearly see in my special boys.  I need to feel that again.  I WILL feel that again.

In the meantime I gratefully welcome anyone with an oar to help me stay afloat until a more light hearted post of daily My Story Our Story shenanigans........  (Coming soon)....

Thursday, May 6, 2010

A Mothers Day Gift with love from Chantelle. xoxo


It's coming up to Mother's Day.  How do I thank the beautiful souls I have been privileged enough to meet in this world who have walked along side me and propped me up on many days when I really really really needed a hand?

I've said before that this is not the life I expected.  However.  Unexpected is not terrible, it's just different.  On the days when difference is is at it's most difficult I have been truly blessed to know some remarkable women also on this special needs "mothership."

I have very little money, I have not much to give...  I do have words though.  Words are always what I fall back on and the expressing of them through my writing is my outlet, my salve on a gaping wound that is sometimes hurting my heart...  I find them therapuetic and soothing.  I read kind or wise words and am instantly soothed and I write often which helps me stay focused and sort out what my feelings are telling me.

I thought I would gift some words to my fellow special mums (and the other mums too who stand with us in support).  These words are not too sophisticated.  In fact they are as simple as they get.  They would definitely not win a literary prize and my literature professors at universtiy would be aghast! 

They are from my heart though and I hope all the amazing women who I lean on enjoy my gift to celebrate our friendship on this journey.

For Every Mum:

For every Mum
Who’s lifted my soul
Who’s held my heart
When not quite whole

When in broken
Pieces, torn in two
You’ve all reached out
And I thank you

Some days so hard
But others light
My special mums
In our shared plight

For the mums who know
The Holland poem
That bought the tulips
In our unique home

For the mums who cry
Who laugh and share
And the mums who cheer
with you and care

For the Mums with love
In their arms out wide
Who share the steps
So tiny with pride


For the mums standing tall
That brace to fight
With courage and strength
With anger and might

For the mums who balk
That chosen is true
For our membership in
Our unchosen crew

No choice did we have
But the love is our choice
And strong is our love
And in unity our voice

The mothers who lift
The mothers who sob
We accept in our day
To strive is our job

Yes we strive every day
The future in thoughts
We lean on each other
Our own strong supports

For the mums in our club
First with a hand
On days you are crashing
And need help to land

For the mums in our life
But not in our boat
And hand us an oar
To keep us afloat

Those friends with the oars
Are scarce on the ground
So we thank those ones too
They are a true gift when found.

For the mums on their own
On these stormy rough seas
With strength that would bring
Most to their knees

For all of my friends
And all the above
You ease my own load
With your friendship and love

I thank each and every one of you.  Happy Mothers Day. 

With love from Chantelle xo