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.

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)....

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

Camp Tales of Triumph and Tribulation (and Terror)

Recap:  Last posting was one of nerves and anxiety on my part about my firstborn baby boy heading off to big boy camp with his occupational therapy clinic and my hopes for his success to prevail and my terror to subside.

Great news!  We all survived camp.  J had a great time and happily set off towards his camp leaders each morning when I dropped him off.  The leaders talked me through all my nerves each day (very patiently which I thank them for) and life has gone back to our usual school term routine again of familiar, safe preschool, familiar, safe occupational therapy in the familiar, safe clinic each week and no more camp preparation, worrying and organisation to do.  "Camp Finished" as it affectionately became known as around here after Jackson crossly expressed his feelings that "Camp is Finished" one morning when he was at first hesitant to attend but then went on to cooperate happily with morning routine to get ready and go... Well "Camp Finished" is in fact finished.  Now forgotten and no need to think about the anxiety this big milestone caused.

Except there is big reason to revisit the events of Camp Finished.  Big indeed.

Whilst J did happily attend and did participate in some amazing activities and had a wonderful time, he managed to do this only because of constant vigilant one on one supervision and encouragement.

One step at a time......  One small, tiny baby step at a time.  I know I know.  The thing is though, this one on one support he so desperately requires to participate in all of these fantastic and fun (for many kids but sometimes not so for ASD kids) will no longer be available soon in the NEXT big milestone we face as a family and what are we supposed to do when he doesn't have the one on one support for him anymore?

My concerns about J absconding and constantly running away at camp were in the end founded and the original ratio of adults to children in his group had to be increased to be able to keep him safe and provide the support he required to stay with his group.

The fact that he happily trotted over to his leaders each morning in a completely new setting, so very different from his usual and comforting routine was a huge achievement for J so we are focusing on these positives along with his excitement about seeing new friends each day which was enough to light up my soul with bright hope for his future potential to form meaningful friendships (the number one and heartbreaking worry for an ASD mum usually).

But! And there is always a but isn't there?

But, to join his group and participate in even a simple task for most kids like eat his morning tea?  Well that caused major emotional meltdown for my beautiful and highly sensitive little man.  He needed a large amount of encouragement to join in for the widely perceived as "fun" group activities like music, craft, obstacle courses and many others that if offered for him to do at home or in his much loved and familiar setting of preschool he has now come to enjoy and look forward to with easy transition and participation (most of the time).

Each day his lunchbox came home still untouched as his anxiety was too great to eat to enjoy the social chit chat usually required or cope with the sensory overload that eating a meal with friends causes for him.  Most days the craft project many of the other children proudly presented to their parents was not completed by J, such was his aversion to trying something he was not familiar with or had no understanding of the expectations of his role in how to complete the task.

Each day when I went to collect him my run down of the day from his support carer was quite literally that.  How many times he ran away, needing to be gently and in a very supportive manner, led back to his group over the day during anxiety provoked emotional meltdown.

Please understand I really don't care about the one less craft project to pin on the wall or the food not eaten in the lunchbox.  I only care about the emotional difficulty and anxiety it caused for my boy.  It hurts me to think of him so frightened about what most of us do and enjoy with little movement on what I liken to an emotional Richter scale.  This Richter scale for J goes up and down with incredible intensity every minute over every task which must be absolutely exhausting for anyone, let alone a child.

This clear need my child has to require such intensive one on one support for his "behaviour" has led me to consider the schooling options (yet again) for next year.  It's a fact he will not receive this support in any formal school setting we have to choose from.  His high IQ means he is not eligible for a support class and mainstream school does not provide one on one support due to funding.  My God how I hate that bloody word.  FUNDING!  It's hard to care about the difficult position the schools and teachers are in because of funding when when the position your CHILD is in is the only thing on your mind.

So whilst I understand that baby steps are still steps and whilst I stand up and cheer, clap and whoop at every single one of those baby steps we take every day with this amazingly brave and oh so bright little boy I also have the niggling worry that we are running out of time for baby steps with the next big milestone looming ahead getting closer and closer in our very near future and not at all in proportion to the baby steps we are enjoying.

Every single decision is fraught with worry when your life is one of a differently abled child.  Every single one.  I wonder if one day these decisions get easier?  I hope so.  I feel some days I bear the weight of the world on my shoulders in an effort to take that weight off my children's sweetly innocent, little shoulders who should not yet have to carry such a load.  We have worked out a balance of helping them gain the independence they will need to make it out there in that heavy heavy world and also bearing the brunt of some of the weight for them when need be I think.  It's hard to tell if the balance is totally right especially on the days I could collapse under the weight.  I never do though.  I'm holding strong and will continue to do so but sometimes it's very difficult to bear the weight without the anger, worry or sadness that sometimes goes along with carrying such a load day in day out.

Thankfully, the baby steps come along and make the load just that little bit lighter at exactly the time  I am thinking it's way to heavy to continue to carry, every single time.

I guess the baby steps are what keeps me going and what will help lead my boys down the right path for every milestone we walk towards (and then have confidently climbed over so far) including the big scary one called school not too far off in the distance.  If you see me struggling with the weight of the world in the lead up to each milestone please don't hesitate to send me the encouragement of those who have gone before me or who just understand and share the load with me in their own lives.......

Combine the encouragement my true and wonderful friends help support me with and those delightful little baby steps and I think we might even see a few leaps and bounds too just like the one I am choosing to focus on for now from confronting, lovely, scary, fun, anxiety provoking, milestone climbing "Camp Finished."

My J described his fellow campers as his friends.  That's quite a leap!  I'll join him in that leap and throw in a cheer for his bravery and all the leaps and little baby steps he has made along the way and continues to make. 

OK....  We are now about to attempt a leap and a bound in one.  We are taking both baby steppers along to the local show complete with flashing lights, side show games, rides like the Ferris wheel, animals and much much more.  Are we mad?  Possibly.  We are also optimistic that we might just baby step through the gate, leap through the show and bound back home with big smiles on all of our faces to cheer about.

I'm sure we'll have a tale or two to tell about the leap of faith we are taking today.  Let's face it, My leaping and bounding about boys provide me with stories and tales about the most banal activities every day so I can only imagine what this undertaking will provide me with.

Bye for now.  Back soon with tales of (hopefully) show triumph. ;-)

What came first? The chicken or the egg?

Age old question.  I ask it because I am a bonafide chicken these days.  A nervous nelly of the highest order.  When did that happen?  This mother hen is living on her nerves and not loving it today.

My son is going on a camp with his occupational therapy clinic next week and I am a ball of anxiety over it, living in terror that it will be a disaster!  Why?  Things have been going pretty well around here and J amazes me every single time we face a challenge so what is with this knot in my stomach?

I know he will be cared for by highly trained and trusted professionals who are familiar to both him and me.  I know he will enjoy many of the activities and I know the independence it is aimed to foster within him is the whole aim of the experience and what we are striving for for J's future but still, I'm torn up with these nerves.

Why can't I see the forest for the trees?  Or can I?  My judgement was questioned yesterday on an unrelated matter to this one suggesting my perspective is clouded by ASD.  Maybe it is.  Isn't everyone's perspective shaped by their own experience though?  Maybe my perspective is totally clear particularly with regards to my instincts and how I see my children because of the shoes I've walked in and those who have not walked in them have a different perspective because whilst I'm in a pair of sturdy but scuffed sensible flat shoes with a few holes in the soles (or maybe even holes in the souls too), others are in shoes I'll never wear again like stillettos or platforms so the view is different?

I worry constantly about my boys futures (no big secret revelation there...  You've all gathered that by now).  I cautiously consider every opportunity for them and make the decision after hours, days and months of angst ridden soul searching and exploring every possible outcome (which is not always comforting).  I see my boys through the eyes of a parent who knows their foibles, their strengths and their difficulties including ASD so I guess I am looking through a fog in some ways but then others may argue the way I see them is with a clarity that those with no experience of ASD would never have.  I wonder if the way I parent is because of Autism or if I would have been this cautious, clouded, careful, colloquial, calamity conscious, confused BUT sometimes calm and clear regardless of the child or diagnosis?

I wonder if I parent this way BECAUSE of Autism or if I would have been crippled with self doubt, questioning of my instincts about big changes and choices for my kids regardless of their neurological make up?

Well.......  Who knows?  Not me.  I'll never know because when it comes down to it my journey is this exact one I step into each and every day.  I put my sensible scuffed flats on and I take one step at a time and put one foot in front of the other. 

Those shoes help me step over the many bumps in the road I walk through each day and they help buffer the shock of the unexpected forks in the road I walk upon to get me and the boys to our destination...  Is the destination totally influenced by ASD?  Probably.

How could it be otherwise?  That's our life.  It's not an unhappy life, it's a sometimes hard life but isn't every life sometimes hard?  It's a wild old ride and a pretty crazy and noisy life I wouldn't trade though.  With this life comes extra worries about the independence of my chicks and their future prospects when they leave the nest of wild but supported comfort here in the nest.....

The camp is still at the forefront of my ever ticking over and worry filled mind and with good reason.  This is my baby.  Yes I know he's growing up and I know he's in good hands but this is MY baby.  The same little guy I've never even let go on a playdate without me.  The same little man who has never had a sleep over at Nannie's house because of his intense need for rigid routine (not mine, frankly I would have loved the odd night off other parents get but understand how hard it is for my boys so don't push it).

However, I am about to drive up to a driveway at a camp especially devised to cater to his sensory needs and I am about to drop him off to spend five hours each day next week with professionals who do in fact know and I suspect love him.  They don't love him in the same heart breaking and aching way his mummy loves him but they do love him.  Every one of these amazing ladies who work at the clinic putting the camp on have embraced my family and laughed, cried and encouraged my boys along in their journeys so why am I still terrified to wave goodbye in that driveway and wish him a happy day of activities each day at camp......?

Why is it so hard to be tough and NOT be a chicken?  I think it really is a case of life experience influencing parenting style.  Ask anyone.  I was one crazy, fly by the seat of my pants kinda gal BEFORE Autism.  Now?  It's all changed and I live by schedules, routines, ASD techniques and making my boys as comfortable and anxiety free as possible.

What is the cost?  Thier anxiety is lowered.  Mine is heightened.  I will take it..  Happy to bear it a million times over if means I could take theirs away totally.  I doubt that will happen though.  Instead we just live with our individual levels of  anxiety the best we can and occasionally they come to the surface like this week with the impending camp adventure.

Maybe I should ask not what came first when referring to the chicken and the egg but instead the Autism or the anxiety?

Either way, we have one anxious, chicken worried sick about her Autism angel for next week's adventures.  I'll let you know how it goes.  Hopefully this chicken is clucking happily away about how well it went and maybe just maybe I'll be able to report of a graduating rooster crowing about how much independence the old mother hen allowed him to acheive by sitting in her nest after casting him out for the first time and nervously picking at her feathers in silent encouragement.....

I wish my little chick all the best and nervously send him out to find his own wings next week at camp.

May you spread your wings and fly my baby.  Fly as only you can.  Soar to the heights I know you can reach!  I love you and ache for your success.  Not for me.  For you.  Cluck cluck.

C.xo

Share and share alike.

Hey there!

A quick pop in today to share a friend's blog space that I just LOVE!  I've connected with an amazing special education teacher who is an author, a blogger, a university lecturer to undergraduate teachers who are learning how to include children with special needs.  Oh....  and an AWESOME advocate for children with Autism.  If Amanda Gray and her Learn to be Buddies series is not already on your radar, please pop over and see what you think.

Learn 2 be Buddies

This month Amanda is doing her bit to raise awareness for our kids by posting the stories of parents and our special moments with our little spectrumites.

Not surprisingly, I jumped at the offer to participate and have shared two of my stories so I'm now putting all of my best behaviour actions and lessons into practice and inviting someone else to take a turn. There is a link at the end of my story to find out how YOU can share your own story.  Please consider doing so.  You can remain anonymous if you wish. 

Have a look and share Amanda's project via your networks and don't forget to come back and tell me if you liked the stories I shared (the Easter Parade one is familiar to regular readers over here but it's too good not to tell twice and it still lights up my face, my heart and my life to recollect it).  I've shared a special moment about my beautiful H bunny too and even provided a video to watch about what Autism looks like to my family.  (Amanda posted it for me as I am not skilled enough in such technicalities to attempt it here....  still learning as are we all).....

I sincerely hope you enjoy the visit to Amanda's blog and of course invite each and every one of you back over here anytime.  I like having you all come and visit me on my journey.

Please visit Amanda Gray's Learn to be Buddies Blog here.

C.xo

To cure or not to cure..... That is the question...... Or is it?

After a whole day of staying UNUSUALLY quiet on a very very hot topic in Australia yesterday after a national morning television program featured a mother who claims to have cured her son's Autism, I have considered my response carefully and I am posting it here.

Australian mum, Vicky Leon appeared on Australia's Sunrise program yesterday and discussed the dietary and biomedical interventions she had put in place for her beautiful little boy, Nicholas.  see here for the full segment  Prof Kerryn Phelps, president of  The Australasian Integrative Medicine Association (see here for more info about AIMA) also appeared as the segment expert and backed up Vicky's approach to treating her son's Autism and explained how many symptoms of Autism will ease by implementing appropriately supervised (by a specialist paediatrician) dietary changes and vitamin and mineral supplements with a focus on reducing toxicity after a series of medical tests have been performed to properly gauge what dosages are required according to the individual child's blood, faeces and urine results.

I watched with interest as my sons follow the same dietary guidelines and are treated under the very strict supervision of a specialist biomedical paediatrician who is part of the MINDD foundation.  MINDD Website link here 

Here is a very short outline from the MINDD website to explain the philosophy behind the practice: 

"The MINDD Foundation promotes an integrative approach to healthcare for the whole family with a focus on biomedicine, nutrition, neuro-development and allied therapies. We help practitioners and patients find effective treatments for Metabolic, Immunologic, Neurologic, Digestive, Developmental conditions that often affect the mind. "

As I watched Ms Leon talk about the biomedical practices and the changes she saw in her gorgeous little guy it was like I was hearing my own sons' stories to be honest except for one thing.  Whilst I recognise that my children have come an incredibly long way, are coping better with comorbid conditions like the anxiety associated with Autism, progressing to having advanced language after an initial quite marked speech and language delay (in Jackson, not so much with Hunter who has had very good speech all along) and their classic symptoms like flapping, toe walking and other stimming (self stimulatory behaviours) have all but disappeared.......  I recognise all of this and celebrate the progress we have made every day.... The one thing I do not recognise or agree with is Ms Leon's use of the word "CURE."  I also strongly disagree with Prof Phelps' decision to appear on the program and not address the usage of that particular word. I feel it was irresponsible to use such a word as many parents in the thick of an Autism diagnosis will be given misleading hope and in this case I truly do not believe it is just a case of semantics.  I dont believe that Autism can be cured.  Ms Leon, stated her son had very few symptoms associated with Autism anymore, attends a mainstream school and has lots of friends, improved language and eye contact as her basis to back up the claim of curing her absolutely gorgeous son, Nicholas.

My children are all set for mainstream school, have excellent language, barely any classic signs of Autism anymore like the stereotypical lining up toys, greatly improved eye contact (that old chestnut of controversy in diagnostic land) and both are very engaged in our family and friend's worlds.  

Cured?  

NO WAY!  Autism is so much more than eye contact, stimming and lining up toys. So so so much more hence the term, Autism SPECTRUM.

Both of my sons have residual issues like difficulty in crowds, social situations, sensory sensitivities and although they can blitz an IQ or language test they have lingering perception and processing problems that will probably remain with them for life.

The amount of times I've heard statements to this effect, "Oh my God, they have Autism?  You can't tell they have Autism, they don't look like they have Autism!"

My question is WTF does Autism look like anyway?

Surely we are now past the entire world thinking Rainman's Raymond Babbit is the only presentation of Autism? Apparently not in many cases.

I am all for parents trying out any type of safe treatment approach when tackling the tricky and mysterious spectrum of Autism related difficulties that are present for the child in question and as I said, I am a happy passenger on the GFCF (gluten and casein free) biomedical train. 

When I heard about this so called miracle cure for Autism when Jackson was first diagnosed I jumped aboard that train at the first biomedical station and have been holding on to my seat on this unpredictable and terrifying track that is our own Autism journey for grim death.  Did I want a cure for my son back then?  Yes I did.  If any of the numerous "experts" I saw had have told me I could cure him by standing on my head, clapping my hands and playing the William Tell overture on the piano with my toes simultaneously, by God I would have done it and I would have done it to perfection so I could never ever look back and wonder if I had really tried hard enough to cure my boy.

The day after diagnosis, I read actress, Jenny McCarthy's tale of her son, Evan's recovery (she does not use the word cure contrary to public perception) from Autism called Louder Than Words see here in one sitting over the course of two life changing hours.  I closed the back cover of the book and proceeded to find my local MINDD Foundation doctor and I begged for an appointment as though my life depended on it.  It did.  My son's life depended upon getting into this miracle doctor as far as I was concerned.

I took my son to that doctor with the express purpose of getting him cured.

How ignorant I was.  How blissfully unaware I was of the complexities of Autism and also the gifts and a life of true beauty that can be possible within a life with Autism.  

I no longer aim to cure my son.  I understand Autism better now.  I aim to reduce the difficulties my children face with such a diagnosis (including the digestive issues they had pre GFCF biomedical treatment that affected their behvaiour, attention, language development and mood regulation).  I aim to raise awareness for them and help make the rest of the world more accepting of their probable lifelong differences.

It's been my aim all along to avoid any pharmacuetically based treatments and via biomedical treatment we have so far been successful and have yet to require any kind of medication for either child. It is important to never rule any option out though and I accept treatment is as complicated and as my children and will require constant review.  Biomedical has indeed been life changing for our family.

It is not a cure though.  I doubt it ever will be and I doubt I'll ever have that aim again anyway.  This mode of treatment has been enormously beneficial in my house but it's not the same story for everyone so I respect those who choose not to follow this treatment plan and would ask for the same respect and courtesy with regards to how I choose to help my sons be the best they can be.  Not be something they are not but be the best they can be.

Each parent sees things differently and the controversy this segment brought up on the social media sites I frequently hover around on getting tips, ideas and make friendships with others in the Autism world was massive.  see here for Vicky's Facebook page   I was a little shocked to see some of the comments from friends of mine judging Vicky Leon's decision to treat her son with biomedical practices and I was aghast to see one of them publicly denounce anyone who would put their child through a bloodtest to find out the appropriate dosages for such vitamin, mineral supplementation approaches.  I admit that the five minutes of trauma during J's blood test was harrowing.  I cried and wondered if I was doing the right thing whilst he was crying during the test.  However, the previous months of anguish, meltdowns, communication breakdown and for me a near nervous breakdown because of my inability to cope with these issues was far more difficult than the one blood test my son was subjected to in order to correctly analyse his treatment needs.

I personally (and it's different for every parent) felt far more comfortable with this responsible approach to putting anything new into my son's fragile system than the previous paeditrician's casual scribbling of a trial prescription for three different drugs to just "have a go at making him a bit more normal before I see him again in 6 months."  Yes, that is a true story.

We are under the very strict supervision of a world recognised expert in the biomedical field and the results have been fantastic for J and H who both seem much happier and more able to cope with the confusing world they live in and no longer live with excruciating gut dysfunction which is reason alone for our family to continue with this approach in conjunction with specialist sensory integration play based paediatric occupational therapy see here.

I repeat though.  They are not cured and nor do I want them to be.  I don't believe Autism is a disease.  I believe Autism is a way of thinking differently.  I believe Autism is an always complex and sometimes wonderful world to be a part of.  I think trying to cure my sons would mean I am trying to change who they inherently are.  This does not interest me as I love them exactly as they are but admit to thinking their path is more challenging than others because of some of the associated Autistic issues so instead of trying to change them or cure them, I am trying to help them overcome some of those issues.

I guess I now believe Autism is actually a way of BEING.

To cure or not to cure was my original question.  I think I'll draw upon the genius of one of my favourite, complicated and quirky authors, William Shakespeare who happened to create a rather indivdual and complex character called Hamlet and quote him here as it's so appropriate.  I change my question now to Hamlet's quandary, "To be or not to be?  That is the question"

Yes, to be or not to be?  That is the real question.  If Autism is a way of being, I choose TO BE for my boys and I think they would to.