THIS BLOG IS MOVING TO A NEW ADDRESS!

THIS BLOG IS MOVING TO A NEW ADDRESS!

COME AND JOIN ME OVER HERE: http://lifeandlovewithautism.blogspot.com.au/

Same story....  New address.

Autism Gratitude Project 2012 Day 4

Autism Gratitude Project 2012 Day 4  


I am grateful that my perspective has been altered by autism. Material possessions are nothing to me anymore. Whilst financial security would be lovely I'm sure, it pales in comparison to emotional security. Our savings are gone, our possessions are few and our life is stripped back bare. Underneath all of that I found purpose, perspective and most of all love. My boys do not understand nor do they care that the roof under which they live is rented. Most important to them is that it's our home and in that home is me. I was here for every word, every step, every difficult moment of frustration, every night terror, every developmental assessment, every meltdown, every therapy, every milestone, every success whether big or small, everything. My choices may not be for everyone but they were definitely the best ones for me. I am grateful I made THOSE choices early on to forget the "stuff" and focus on the future as the future is very bright for my boys with me on their side!

Autism Gratitude Project Day 3

Autism Gratitude Project 2012 Day 3

I am grateful that autism has redefined my preconceived notions of what strength means. I once believed I had to do everything on my own and asking for help was a sign of my weakness or failure. Although I have broad shoulders (metaphorically at least), I reached a point recently where the weight of life events (autism contributed indirectly) was just far too much to bear. I sought help from family/friends/trusted members of my autism support group (in other words my whole "autism family") and in addition to that help I sought counseling from the Salvation Army Counseling Service. I would NEVER have freely or publicly admitted that in the past and it was to my own detriment. Needing help is no longer a source of shame or what I previously would have considered a chink in my armor. It's the complete opposite. Putting my hand up tentatively for help prevented me from sure drowning and STRENGTHENS my armor every day. Although there is pretty much always a battle somewhere in my life, I know I have that strong armor, the "weapon" of a voice not only willing to speak out in advocacy but now speak up in need too and an army of support surrounding me. If not for autism, entering my life and the events following it's rambunctious entrance, over the last however many years, I'm not sure I would have ever realised whispering, asking or shouting for help sometimes is not only what makes us human, but sometimes takes superhuman STRENGTH. For the ability to ask for help and the realisation it's available to me in abundance, I am grateful.

HAPPY WORLD AUTISM AWARENESS DAY!

Autism Gratitude Project 2012 Day 2 - HAPPY WORLD AUTISM AWARENESS DAY! 

I am grateful for my beautiful boys, J and H. Today on this special day which celebrates them in all of their wonderful quirkiness and delightful difference AND also on every other day of their lives, I am beyond grateful for them. My dream was to have children. To become a Mum. My dream came true twice. Simple. I am fulfilled, proud, amazed, joyful, overwhelmed, awe struck, drunk with love, fiercely protective, unafraid to FIGHT, unapologetic in my drive to beat a path of AWESOME for their lives and ALL LIT UP BLUE inside and out in gratitude for J and H. They complete me and make me better than I could have ever dreamed of being. In short. I love them to the moon and back, past the stars, through the whole universe and over the great blue yonder beyond any limits. My love is limitless and so are their lives now and forever. SO VERY VERY GRATEFUL. xoxoxoxoxo

♥ Chantelle

The Autism Gratitude Project 2012

For the last two years I've joined a lovely facebook in friend doing an Autism Gratitude Project during April to mark Autism Awareness Month....  I have had one HELLUVA year since last year's gratitude project and after the near demise of my marriage AND near demise of me (see this post for further info on THAT), in large part due to the stress of autism, it would be easy to focus on all the negative things that autism has brought into my life.

 

I am going to do The Autism Gratitude Project again this year though as it just might be what I need to remind me of all the wonderful things are in my life also in large part due to autism and to maybe even see that the near demise is indeed something to be grateful for one day as it's my hope that the events that damn near broke me will eventually be the step in my journey that strengthened my stride into unbreakable.

 

So on the day before Autism Awareness Month officially started I marked my gratitude by acknowledging that I'm grateful the above statement reads, NEAR demise on both counts and not ACTUAL demise..... Small but significant steps are being made to move further away from any kind of demise every day. 

Here we go though, it is now April 1st and that means Autism Awareness Month is officially underway.

Happy Autism Awareness Month and please join us on facebook or post below in my comments section if you prefer or maybe just write a journal for yourself but why not join those of us who choose to see the gifts of autism by stating one thing you are grateful or each day during April because autism entered your world.  It can be a positive thought, a happy/flappy story, anything.  I'll start......

Autism Gratitude Project 2012 - Day 1: I am absolutely filled with gratitude to be surrounded by the love and support of some truly remarkable people I've met through autism. The real everyday heroes who literally change the world through their tenacious courage to advocate and constantly fight for their children but who's cup is never running so empty that they can't offer a drink of love and support to their friends fighting beside them. Bravo to my amazingly brave, brilliant, talented and exhausted friends who give a new definition to the word strength. I am grateful for each and every one of you who I would never have met if not for entering this different world of autism/additional needs. You know who you are and each and every one of you raise me up.

Much love to all of those in my world who inspire each other and me.

Baby Steps and Speaking Out

So to follow on from my last post I tentatively stepped back into the public speaking arena today on behalf of one of my very favourite organisations, Carers Australia, who are the recipients of the Pollie Pedal fundraising event.  Carers Australia and Carers NSW invited me to tell my story at the launch of Pollie Pedal which took place at major sponsor, AMGEN's premises with special guests, Ara Creswell - Carers Australia CEO, Elena Katrakis - Carers NSW CEO and John Alexander MP.

I was speaking about caring and the impact on one's life becoming a full time carer has.  I'm sure AMGEN and Carers Australia won't mind that I've shared my debut speaking gig post life overhaul malaise here with YOU.

Read on and enjoy:

Good afternoon everyone, my name is Chantelle and thank you to AMGEN for having me and asking me to tell my story today.

I will just start by saying that I’m not a professional or particularly talented public speaker.  I’m just a mum who happens to be walking a different path than many of my peers as when I became a mum I also became what we now know is termed “a carer” as well….   And like many mums with small children I get pretty excited when an opportunity presents itself to mix with real life adults.  Also just like other mums I don’t get a lot of sleep…..

Soooooo that combination CAN be a little dangerous out in public. 

I’ve been up since about 4 am so if I don’t nod off mid-sentence then we’ll deem this a success ok?  Deal?

So to tell you my “warts and all” carer story in 5-7 minutes I really need to leave out quite a lot of the ALL and several WARTS too.  If you have any specific questions about anything I mention, please don’t hesitate to ask me later.  I LOVE TO CHAT.  So…….

Most people have significant events or dates in their life that changed it.  The day you graduated university perhaps, the day you got married for instance or the day you gave birth to your first child.

I can relate to the day I got married and the birthdates of both of my beautiful bouncing baby boys (who could forget birthing all 10 pound 4 and 10 pound 9 of them…. really)?  Yes you heard right.  10 pound 4 and 10 pound 9.  Oh and my second child, without pain relief and in the record time of 55 minutes.  You may give me a round of applause for that if NOTHING else today if you wish but I digress as that doesn’t really make me a better carer it just makes me AWESOME.

Ok Ice firmly broken……  Let’s get on with it.

Another date I’ll never forget and when my life changed forever is the 8^th of the 8^th 08 (080808) when my gloriously handsome clever and quirky firstborn baby, Jackson, at 2 years and 10 months old was diagnosed with Autism.  We’d known things were not quite the same as the other kids in Mums group for a while and my inkling that Jackson was developing differently turned out to be spot on when after a very harrowing and complicated diagnostic process Autism was confirmed. 

My second son Hunter was only 20 weeks old when Jackson’s diagnosis came through so a new baby, a toddler with Autism and a landlord announcing we had to move in unrelated but badly timed circumstances was a pretty chaotic and confusing time. 

Did I mention that during all of this my husband was struck down with Viral Meningitis from which he still suffers memory issues among other side effects?  Well yes…  Add in THAT and you’ll see that caring landed in my life with all the subtlety of a sledgehammer.  Not one to do things by halves around a year later give or take a few months (dates had become a little blurry by then) my second delightful, gorgeous and amazingly fabulous son was also diagnosed with an autism spectrum disorder. 

It was quickly evident that my previous life plans of returning to work at some stage for financial security were now very much secondary to a life of early intervention, never ending appointments, advocating for my children’s basic rights and sometimes working with but most times fighting with “systems” doctors, therapists, schools, policies and much more and this new life was now my “normal.” 

Dreams of a nice house and a picket fence were replaced by dreams of my children having not special opportunities but at least equal ones to other children without a disability.

It was like a bomb or several consecutive bombs had exploded in the middle of my life and I became a lone (and very lonely) soldier fighting a war I never asked to be in.

That’s the thing about caring though.  Nobody asks to become a carer.  Caring does not discriminate. 

People discriminate but caring does not.  You can become a carer anywhere at any time and chances are you will not be prepared.  Few are.

I can only speak for myself but I’m pretty sure not many of us meticulously and responsibly plan for the event that our children are either born with or acquire through accident or injury, a disability of any kind. 

I’m not sure I gave it much thought as after all this is the lucky country and like most couples planning a baby we thought we are young and free just like the song goes.  She’ll be right mate?  Well maybe not that cavalier BUT disability definitely didn’t factor into our plans for a family and the financial and emotional strain on a marriage that caring brings is nothing short of EPIC.  Trust me.

Few of us would be planning babies and say, “hang on a minute babe, are you sure we’ve set enough money and emotional fortitude aside for predominantly unfunded lifelong therapies for the child we are planning in the case of them having autism?”

 

Any caring situation can happen at any time as I said.  Mental  illness, disability through injury, chronic illness and any other circumstance where you are required to become a loved one’s full time and unpaid carer can come out of the blue when you least expect it.  Although I would ask you all to consider that most of us have parents.  So whilst caring seems to be an issue that OTHERS deal with at some stage caring is VERY likely to touch your life via caring or at least making plans for elderly parents as they age.  Caring is in fact NOT something that just happens to others.  It is an issue for us all when you consider this.

If or when “caring” happens it’s overwhelming, confusing and above all EXHAUSTING.  Where do I go for help, what funding if any can I access, what is this elusive thing called respite other carers speak of?  Who do I talk to when I’m having a day where winning just the battle at hand seems impossible let alone the war at large?  How do I find support and some guidance?

Enter Carers Australia.  Finding a first port of call in a sea of complete and utter confusion and sudden isolation can be the difference between sinking or swimming for carers.

Carers need a glimpse of land when on stormy seas, including information, opportunities to connect and practical help.  A reference point to turn to and help direct us to appropriate services and support in this new world and most of all we need a voice on the days when our own is just too defeated and too tired to shout.

So thank you AMGEN and Pollie Pedal for supporting Carers Australia as YOUR support helps them care for those of us caring for the one or ones we love.

Although being the mother and carer of two children with autism is without question the most difficult challenge I’ve ever faced it is also the most rewarding experience I’ve had too.  Even on the bad days I wouldn’t change my children BUT as hokey as it sounds I’d like to change the world they are growing up in and YOU are helping me do that.  By caring for me, the carer, you are helping me care for my boys and they are the loves of my life.

THANK YOU.

**Cue applause and lunch with the lovely people of AMGEN and Bennelong Member of Parliament (and tennis legend) John Alexander MP, Ara Creswell, and Elena Kratakis.

Help!

I don't write much anymore.  I rarely post on this blog and what the future holds for it I don't know.

I lost my writing itch some time last year when I lost my self.

I had a breakdown.  My life exploded, my heart shattered and I've been clawing my way back very slowly one tiny broken hearted piece at a time putting one foot in front of the other as it's all I've been able to manage.  I stopped writing and I also stopped speaking out.  I declined public speaking engagements and turned down media invitations to speak out about autism, carers and what the issues so desperately in need of overhaul are in these areas.   I've watched with interest the recent media interest in autism and have actively avoided making myself available to participate in any of it and have shied away from suggestions I should get back out there and speak out to raise awareness again.

I've been busy taking care of me.  I haven't had the inclination to be a voice for autism or carers for so long and my inclination to help others was crushed last year along with my heart so bitterness has crept in and now I'm just trying to stay afloat in a sea of self doubt and autism battle scars.  I am full of doubt about what the hell I can do to make a difference anyway and why the hell I'd bother when all the talking, speaking and fighting yielded me a life that now resembles a train wreck.

I made time just now though and finally got to sit down for the full 18 minute ACA (Channel 9's A Current Affair) tip of the iceberg forum on Autism just now and watched online  (http://aca.ninemsn.com.au/video.aspx).  Within 30 seconds I started bawling my eyes out and not because my children are severely affected, not because their future is bleak because of missing out on therapies and not because I relate to the exhausting 24 hour grind of stimming, non verbal frustration based meltdowns and being injured every time I attempt to hug them.  Quite the opposite.  How blessed our family is that we DID get access to life changing early intervention after stamping my foot, screaming at medical professionals to LISTEN and pushing the buttons of every professional in an educational setting we've been involved in (which has NOT won me friends but I frankly don't give a crap as I need my boys to get EVERYTHING EVERY child should be entitled to in this "lucky" country so making more friends is the last thing on my one track mind when fighting every step of the way for THEM).

Nope, I don't have to endure the emotional agony of being pushed away because they are so sensory defensive that a hug is painful for  them.  I can thank the hundreds of hours and thousands and thousands of dollars (some because of funding and some from our own very empty pocket) we sunk into sensory integration therapy from world leaders in the field for the regular hugs I receive.

I don't have the unimaginable heartache of never hearing my babies tell me they love me or even the frustration of not understanding a request for a drink or toilet break because my boys are verbally capable of telling me what they need thanks to the hours of speech therapy and O.T. which is also because of early intervention funding and the sacrifice of accepting early on we would never own a home and instead spend what we had aside for the Aussie dream on therapy.  I gave up the idea of going back to work and have done Autism full time 4.5 years now to give our boys the access to dreams of their own one day to the detriment of everything else in my life.  I lost several friends for varying reasons (none of which I dwell on as I have no time and really never will so have accepted that Autism ain't for wimps and those who managed to stick it out are the keepers anyway).

I've pissed off supportive family members regularly because I had/have no time for anything else.  Nothing else.  I don't remember birthdays, I rarely call, I have no idea what's going on in anyone's lives except my boys.  I forgot I had a husband who I pretty much ignored, resented and then lost.

I lost my husband who eventually got fed up with being ignored and resented and when you ignore someone long enough they will gravitate toward someone else who doesn't ignore or resent them.  I've never said that one out loud online before.  Never confirmed what many suspected.  If you suspected that misery loves company, then yep, misery found some equally miserable company and I lost him to her.  Absolutely devastating.

She's out of the picture now. I guess it was just another "fight" I fought and won if winning is even possible in the war of broken spirits and shattered hearts.  I slayed the dragon of pathetic misery taking what was not hers to take and I fought for my husband to come back to me.... A fighter.  He is back but life is fundamentally changed. I'm fundamentally changed. I'll never be the same.  This means my boys lives are fundamentally changed.  That makes me angry, sad and a little defeated.  I've won so many battles for these babies and there is no doubt that they are leaps and bounds ahead because of it.  What was the cost?  There is carnage.  So much carnage.  Life is forever different now.  A new fight ensues now.  The fight I fight with myself and my conscience.  Should I regret the actions I took in my battles because of the casualties like friends and my marriage or celebrate the wins with gusto and accept all's fair in love and war?

Should I fight my own misery now?  The misery of heartbreak and betrayal is deep.  So very very deep.  I've needed to call in reinforcements for this fight.  Counseling.  Counseling to help communicate with my husband and rediscover our broken battle scarred relationship.  Even the language of counseling can be likened to battle terms too.  Apparently I attack.  I attack autism.  I attack obstacles and I fight.  I say I ignored my husband but through counseling it's becoming evident that I've become so familiar and accustomed to attack mode that I seem like I'm on the attack all of the time.  I guess it's hard to live with communication that feels like it's an attack on your abilities and commitment all of the time.

No wonder misery entered.  Misery only loves miserable company for so long it seems though, particularly when that miserable company acts as a mirror.  Looking into a mirror and only seeing selfish weakness when a life in autism requires the polar opposite being selfless strength NOT selfish weakness, well it acts as a wake up call to the weak to appreciate just why being ignored and feeling like that isolation was an attack on your partner's commitment is almost necessary to just "suck up" during a time when a mother's babies need her to be ruthless, friendless if necessary, lonely if required, invincible in every situation requiring the fortitude to FIGHT for her children and single minded enough to beat a path of fairness for a better future.

I wonder if access to counseling from day one of diagnosis would have helped?  I wonder if his misery might not have gotten to the point of seeking out equally miserable company.  You have to wonder if the divorce rate in this world of autism could be helped somehow with better support for parents who become soldiers.  It's so hard to remember which side you are even fighting for after a while.  It all just becomes part of the war.  One day merges into the next one with battle after battle.  When you are losing parts of yourself along the way and there are few people willing to join your army it's almost inevitable that those you thought were on your side defect, go AWOL or just surrender in their own fight to stay alive or feel alive outside of autism.

So now I'm fighting the battle of myself.  The battle of marriage and the battle of forgiveness.  I know there will be so much more fighting to do.  I need my husband and I to be a united front and I'm trying to muck in and get to the next battle together amidst the bombs of life with autism dropping around me.

So when I watched ACA and saw the families describing their lives, saw the kids who did not get early intervention, heard the parents describing the strain on a marriage and the urgent need for reform in the areas of funding in all of it's edited glory I cried.  I just cried.  What hope is there when the minister for disability can't even show up for the forum and instead sends a tokenistic and unbelievably condescending video message waxing lyrical about "understanding" our families?  Stop talking and join the battle.  Take up the fight for fair education opportunities for our kids.  Take up the fight for fairer funding for essential therapies for our kids and take up the fight to support our kid's carers to better be able to stay in the fight TOGETHER.  We need respite.  We need help.  We need awareness and we need it now.  None of us have another 4 years in us and those who have been in the war for 10, 15, 20, 40 years don't have another day in them.

I cried because my boys got the funding and we used the funding.  They are now high functioning and doing well.  Now what?

What happens now?

It came at the cost of my health (mental and physical), my marriage, my career, my financial future, my dreams, myself.

I have post traumatic stress disorder from the battle.

I said "we" need help and I meant the autism community as a whole.  "I" am part of that community and "I" need help.  Stop talking.  Help already.

Every single child in this country deserves the best.  Including those with autism.  Including mine.

Tell the politicians.  Don't accept that in this country children are going without essential therapies and families are falling apart in a hopeless fight.  It's not good enough.  I'll start speaking out again but I need help.

April is Autism Awareness Month.  Start helping, start speaking out and start helping.

Minister Jenny Macklin.  Are you listening?  Are YOU helping?

I am on my knees.

Today I Am Grateful For.......

During April 2011 I participated in an Autism Gratitude Project with 115 other ASD parents on Facebook.

Every day during Autism Awareness Month we posted something we were grateful about directly because of Autism affecting our lives as our status.

The idea was to shine a positive light on our lives of difference and to help raise awareness for the issues our families and loved ones face living with an ASD diagnosis.  There are so many reasons and occasions to feel anything but grateful on some days particularly in the thick of a very large public meltdown when many judgemental or even pitying (which I find worse) eyes are on you and/or your distraught child but as I've eased into the role of autism mummy and autism advocate I've become very aware of how much I do indeed have to be grateful for.  This was a gradual process. 

I didn't always feel grateful nor did I always embrace autism as something I wouldn't change if given the chance.  These days I accept it whole heartedly as part of my life and I love my life for the most part.  It's way too hard to imagine a different life for me that was not touched by special needs now.  I don't wish things to be different for us.  I wish the world was easier for my children.  Perhaps by raising awareness through finding gratitude, in some small way the world will be easier for them.

I do admit to being a tad skeptical at the beginning of the Gratitude Project though that I could find one thing EVERY day of the month to be grateful for because of autism.  However, as the month ticked over I found myself posting several times a day.  It became easy but wasn't at first.  It took a lot of self assessment and looking within.

Some things were tongue in cheek, some fun, some very emotional and few that were emotive in response from others.

Now that the end of the project is here, upon reflection, I think that if I hadn't been thrown onto this rollercoaster with no end (EVER), it may have never occured to me that a feeling of gratitude is not always a given and is instead sometimes project worthy to help learn how to see things differently.

The gratitude project helped many of us participating learn more about ourselves whilst also hopefully helping fellow parents to find the acceptance that takes some time to get to post diagnosis.

As it's the final day of this project and Autism Awareness Month is drawing to a close I am finishing it with an open letter to my sons so they know how truly grateful I really am that my life is exactly as it is:

Dear beautiful boys,

I am grateful for you, to you and because of you every minute of every day.

I weep for you, cheer for you, stand up for you, fight for you, love you and LIVE for you every day.

I am grateful that you are exactly the YOU that you are.

Once upon a time I could not have fathomed that I would be grateful for any difficulties you would face.  Today I am grateful for exactly that.  I still nurse a wound in my heart for you that reminds me of where we've been and that although we might have come a long way, we have further to go.  The difficulties might hurt us but we are strong.  We've only become stronger since facing them head on too so I know deep deep down inside my wounded heart that we can travel this journey together.  Our journey might be a little trickier and slower than others' journeys but we WILL get there...  Wherever THERE may be for US.

I am grateful for your voice and chatter that I was once frightened I wouldn't hear.  I am grateful for the open hearted love I was once ignorantly scared I'd never feel from you that you now so regularly bestow upon me through affection, cuddles and requests to pick you up and carry you.  I am grateful for the invitations into your games I was once terrified I would never see or participate in. 

I am grateful I experience life through your eyes and now see things I'd never have noticed if not for your eye for details I don't usually notice. 

I am grateful for the pride I am consumed with when you beat the odds and conquer your anxious moments.  I am grateful I appreciate the little things because I was once worried the little things would not exist for us.  I am grateful the big things exist for us too....  Imagine my gratitude when little things and baby steps transitioned into big things and giant leaps and bounds.

I am grateful for the people you have brought into our life.  These are the same people I so resented in the early days because of my own vanity.  I resented them because of the ugly pride I nursed and clung to even though the pride was dented.  I am now grateful for needing to reach out for help.  The help that took my outreached hands and broken heart taught me more about myself in three years than I could have learned in a lifetime if I'd never needed to reach out in the first place.  I am grateful for the community of people and friends we now think of as part of our team.  Many became part of our family.  I am grateful that because of our team, we are rarely lonely.  I am grateful we are loved, understood and cheered on by our team.  Our team keeps me propped up enough to cheer you on.  I am so grateful I get to cheer you on.

I am grateful I was limited in my own choices in order to expand yours.  Oh how grateful I am that I had no other choice than to abandon being anywhere but with you for every moment we've shared on our way to where we are.  I am grateful for every one of those moments no matter how many of them were hard, no matter how many of them I cried and no matter how many of them were filled with fear.  For every moment I may have felt trapped at first and for every moment I lamented that your opportunities may be limited as you grow up, I had many many more moments filled with the joy of you growing up before my very eyes whilst I watched with all consuming love.  I am grateful I experienced these moments of joy for they far outweighed the moments of hardship. 

I am grateful that you taught me true patience.  I can wait until the end of eternity if I am waiting for you.  I used to hurtle through life on the fast train, always wanting to get to the next step, the next place and go further....  You taught me to slow down for you.  You taught me to slow down for me.  Thank you for teaching me to enjoy the view on the way to wherever we are going.  I am so grateful.

I am grateful that I have gave you the foundation of my presence in the absence of riches or posessions.  I am grateful I got to build you bricks of love, time and kisses that make you feel better when hurt in the absence of bricks and mortar of our own.

I am grateful I have heard the divinity of your giggles and great big belly laughs more than I have heard the hell of your tears or pain.  I am grateful to have had moments where time stands still for me and I truly feel us sharing a connection I was once bereftly yearning for.  I am grateful I have laughed WITH you.  I am grateful that I understand the significance of you looking deeply into my eyes and the agonising level of trust in me you need in that moment, so hard for you to do otherwise.  I vow to you that I will never take for granted that trust you have in me. 

I am grateful that you love me......  And oh so very grateful you have told me.

I am grateful you have made me who I am. I am grateful for the opportunity to fight for you every step of the way because you helped me find my calling.  I was born to be your mother.  I was born to fight for you.  Never has there been a more true purpose in my life than to be the mother YOU need me to be.  I am the best me I can be because I want your best you to be proud of my best me.

So my babies.  My sons. My loves. My life........

I am grateful for YOU! 

I will love you forever.

Mummy.

I have a dream.... A Sunsuper Dream!

Hi Bloggers....

A little note which asks you all a favour....  Scroll down after reading my note and see why I'm asking the favour.....

Hoping you can help me out and in doing so you will also greatly help my VERY FAVOURITE charity in the whole wide world, The Autism & Aspergers Support Group Inc out.

I entered this dream for a better world on Sunsuper Dreams! You can check it out and help make it come true by voting for it here: http://bit.ly/fJcDys - The dream with the most votes at the end of the month will be awarded a $5000 grant.  It’s quick AND free to vote. After you vote, can you please also check your inbox for a verification email (might go to junk)?  If you don’t verify the vote, it won’t count.

Where will the money go?

The Autism & Aspergers Support Group Inc recently acquired centre space at The Stewart Street Centre in South Windsor which will assist Hawkesbury families seeking support for ASD related issues at all stages of their journey.

AASG is developing a social & therapy program to be run at the centre.  Local school aged children who are no longer eligible for early intervention funding will be able to apply for our program and receive access to social support & intervention.

$5000 will go towards buying equipment to assist with therapy for participants of our program and provide therapists & tutors.  The program aims to increase children's progress/success in both the academic and social areas that school requires but is so difficult for children with ASD without ongoing support.

Please get voting to improve the lives of children with Autism and don’t forget to watch the video attached to the entry.  Beautiful music... Beautiful kids.

VOTE HERE: VOTE FOR CHANTELLE

Many thanks,

Chantelle.  xo

PS:  Please feel free to not only vote but to share throughout your own networks and really give AASG a boost towards helping our gorgeous kids.  J

My Entry for Sunsuper Dreams or "My Dream" if you prefer:

When people think of autism, they think of isolation. Social isolation is a real issue for families living with autism which included mine until.... We connected with The Autism & Aspergers Support Group Inc. My dream is that all families who are members of the Autism & Aspergers Support Group Inc can enjoy improved services and connection opportunities to break through the barrier of social isolation.

My dream is that the children from those families, including mine will NOT be forgotten when current early intervention federal funding provided through the “helping children with autism package” runs out at age 7.

I dream that the families who are currently desperate with worry about what will happen when their child turns 8, 9, 10 and right through up until adulthood will have hope. I dream that hope comes in the form of specialised school aged services for the children who have come so far (again, including mine) but need further help to reach their full potential. Hope can be turned into real promise for a child who is supported at all stages of their journey. I dream that children with limited social opportunities due to ASD will have opportunities to make real connections. Connections of meaning that make our kids smile. Really smile. Connection with friends means that our beautiful kids currently struggling with the confusing world are far less likely to experience the agony of bullying and loneliness. I dream children with ASD can live free to be who they are.

I dream that people with autism and their families have the same opportunities to experience the uplifting feeling of having real friends, real connections that everyone else enjoys. I dream that all the families AASG currently supports really will see our motto of “building understanding, awareness and connections through community” come true.

VOTE FOR CHANTELLE

Celebrate Good Times C'mon!!!

So..................  How is the tiny squashy classroom going that my five year old had meltdowns during big school orientation upon approach about (see last blog post)? 

How is big school going?

Pretty awesome actually.  I LOVE being wrong.  That may come as a shock but truly, I LOVE it.  Is everything perfect?  Absolutely not, no way and it never is but is it going well?  YES YES YES!

After some initial teething problems and the odd issue cropping up here and there, I can confidently report that my little guy is doing super duper flipping brilliantly.

May I brag a little?  Oh go on then.....  ;-)

In J's class he is part of a specialist ASD class located in a host mainstream school.  The ASD kids get access to integration programs and my guy is completing all of his school work and homework beautifully (yes, I am serious.....  Kindergarteners now have homework.  Cripes).

He looks forward to school (most days) and happily skips into the gate shouting hello to his teacher and teacher's aide and usually has something he's decided they simply MUST know about IMMEDIATELY that he's bursting to tell them.

He does news each Monday, joins the mainstream for sport, P.E, music, assembly, library and playground time everyday.  He has friends in his class and he has mainstream friends from his preschool he is still connected with.  It really is the best of both worlds for now and I am pleased with my decision to approach school this way for now.  Whoop!

Amidst the big school dramas and commotion another milestone was happening quietly and without fuss.  That sums up the way most of these particular milestones are achieved......  H.  My beautiful, big brown eyed curly headed monster, aged three whole years now started preschool.

It wasn't stressful nor was it painful.  I knew he'd be ok as he is going to the preschool Jackson attended and simply could NOT be in better hands.  Team J has just transferred over to team H now and he couldn't be happier either.

I didn't shed any tears the day Hunter started preschool.  Nor did he.  He confidently walked into the class, hugged the teachers, asked when he could eat his lunch and told me, "You go now Mum, it's time you go."

I must admit the old faithful tears are threatening a little bit now as I recall that day though as I often don't get time to really celebrate or commiserate H's "stuff" in the thick of J's rather more intense transition issues.  Perhaps my tears of joy and sadness for all of H's big days will come later and more quietly than the tears of J's big days.  Perhaps it's just that because I have walked the path of all the big days already with an older child the tears are not coming from a place of as much worry and despair as I trust in my decisions a second time around.

Whatever the reason, there is no less pride, no less love and no less fun for my little H bunny who is growing up way too fast and a wee bit "naughty" (but just always gets away with it somehow...).  So charming.....  So pretty....  Out of this world pretty really and that's how he gets away with being a little cheeky.  One look at his eyes and you are gone.  They are more powerful than Jedi mind tricks.  Those big brown pools of utter beauty get you in.  I digress but it's hard not to once on the topic of those eyes.....

I reported in a previous post that all I wanted for J on his first day of preschool was that he make a friend....  Both boys have made friends and both are happy.

So the goals of making friends are well on the way.  We can start to look further afield to celebrate the "normal" goals and those that "normal" families celebrate.....  Ok then, I can report on those type of firsts too proudly:

J has independantly bought an apple juice at the school canteen and counted the right amount of money to hand over (we have the apple juice still unopened in our fridge as it's way too special to open apparently so clearly he "gets" what an achievement this is).

H delivered news today at preschool for the very first time, showing his friends his Toy Story Jessie and Bullseye toys with confidence.

Small achievements?

Not to us.

As this title says.....  Celebrate good times, C'mon!  I am humming the tune and having a little dance of joy that I really have nothing but smiles, light and love to report from our end of the world at the moment.  We are still not rich (or even comfortable really financially speaking), we are still not "normal" (and what the flip is normal anyway?) and we are still not doing anything the easy way.....

What we are though at the moment is very very happy.

Reason to celebrate in my book.

This is only a snippet of the great stuff in our world at the moment.  Stay tuned for tales of first guitar lessons, signing up for team sports, my latest ASD community based project and much more.

Isn't it wonderful to have soooo much good news to tell that I can't fit it in one post?

Whoop!

Big School - Send me an Angel (armed with tissues).

In two sleeps my firstborn will be facing the biggest day of his life so far according to the milestone markers.  J is about to start big school.

So much has gone on over the school holidays between preschool and this mysterious, scary big school place and I'm not sure any of us are truly ready for what lies ahead but the time has come.

Since leaving preschool J had had a set back with regards to behaviour and it's difficult to tell whether this is simply because of the routine disruption, services and usual appointments ceasing during the break or if it's because of his anxiety over the big school milestone looming.

To say this transition has so far been disastrous is the understatement of the century.  J was originally enrolled in a mainstream school within walking distance in our little community and it looked as things were going to go very smoothly.  Funding was promised, understanding was expressed and confidence was fostered.  Until a funding meeting went pear shaped to say the least.  I was invited to bring along members of "team J" which meant that the school invited me to bring professionals or "experts" as they are widely termed who work with J to help the school apply for and allocate appropriate funding for a teachers aide and any other requirements he would need because of his ASD diagnosis.  During that meeting, my "experts" who were there at my own considerable expense, were largely ignored by the school "side" of the table and in fact they were very rudely dismissed when elaborating on positive behaviour strategies that Jackson responds to as the school "side" brusquely pointed out the appointed class teacher had over 30 years of experience and those were standard teaching practices not worthy of mentioning in a funding meeting.  Those strategies were much better left until we had a "process" meeting.  I was just as surprised as my experts that there were even any more meetings to be had and was taken aback the many meetings each had categories for certain topics of conversation and strategy with regards to accomodating my son's right for an education..... (Getting fired up thinking about it again....).

It was also in this funding meeting that I enquired as to what sort of in service training the staff/teachers would be doing in preparation for J's different learning style as it was common knowledge that the school had only seen one other student with ASD go through the school (which I thought meant they had little to zero experience with all things ASD but was corrected by them that it meant they had a WEALTH of experience with all things ASD from their one student).  I had offered to pay for several courses and seminars with notable ASD experts for the teacher to attend so I was keen to see which ones they were going to take me up on.

Loudly and proudly I was informed that the entire staff was going on an in service training course to prepare for J's arrival and that it would NOT be any expense to me.  I was thrilled!  What course?

Safe Restraint Practices.

I thought, "WHAT THE F*CK?"  (Sorry).

I said, "I beg your pardon?"

Safe Resraint Practices.

A few deep breaths later I conceded I am fine with the staff doing that course but only if it is done in ADDITION to a course that might teach them how to TEACH my child with a superior IQ but a different learning style so perhaps there would be a greatly reduced chance they would ever need to use their Safe Restraint Practices knowledge.

It was not to be.  Many emails, a less than satisfactory orientation visit and sleepless nights over the thought of handing him over to a school that I truly believed was coming at ASD from the entirely wrong angle, I wrote them a letter explaining we had accepted a position elsewhere.

My little guy who we had worked soooooooooooooooo flaming no I'm going to just say it how I'm thinking it.....  So fucking, unbelievably, exhaustingly, fucking, (sorry again) hard to get ready for mainstream education was now going to be placed in a private ASD specific class in a religious school in preference to a mainstream school because of the safe restraint practice attitude (we are not religious, nor are we of any standing to afford the fees for the private ASD class but we took the place).

My son is not being placed in this class because he is intellectually unable to cope with mainstream material.  He is being placed in this class because we had no acceptable option to suit his needs in our opinion.  He is NOT going to school with his peers and he knows it.  The big killer for me is that bit.  For the first time J has verbalised he is different and that he doesn't like it.

I know he IS different. I don't want him to be any other way. I adore him.  It's very hard seeing him struggle with it.  I do not adore THAT.

The school we accepted this position in, is also the school where many of his friends from preschool will be attending their first day of school with their shiny new uniforms, school bags and hopefully big smiles on their faces as they wave goodbye to their no doubt teary mummies who are proudly enjoying such a lovely milestone (yes, I know the first day of school is hard for everyone regardless of special needs or not).

Those kids though (his firends from preschool) are not in J's class.  J's class is called the "autistic unit" according to the school information handout.  "Autistic unit."  It sounds wrong.  Is the unit/building itself autistic?  Is the door very rigid and the windows a bit repetitive?  Do the desks have a special interest perhaps?  Is this why the unit is autistic?  Of course not.  It's because the children inside that squashy room have autism.  The children with autism (yes I know it's just semantics but I despise the use of describing people as autistic as though that's who they are, what they are and how they are as a total being.  Autism is a part of them not their totality, I digress.......).  So anyway, the children have autism inside that squashy room that seems so so so badly set up for children with sensory difficulties with huge walls of distracting cluttered shelves full of toys and things far more interesting than the teacher for my sensory seeking guy who will have those shelves ripped down within days I predict.  Don't read that and think I have any objection to J being in a class with children with autism or am weirdly discriminatory about other children with autism.  I am not.  It's just that I've lived in a world of inclusion.....  No..... J has lived in a world of inclusion at preschool (I'm crying now and letting it all out as I type about lovely preschool that is not squashy and segregated).  It was inclusive and supportive.

That's what school SHOULD be.  Oh sure they talk the talk.  We know J will have "access" to the mainstream children at recess and lunch.  He will have "access" to the mainstream classes as time goes on and join the other children for music, sport and church (I wont even go there on the religious expansion of his learning..........  I respect all religions but subscribe to none and have no desire to so the religious element is playing a part in my overall blah about this school thing, anyhoo, like I said, will leave it there).......  So they talk the talk. 

Not sure they (school) are walking the walk.  The school handout tells me of a wonderful caring environment where we are welcome to join in and volunteer at school and be a part of the P&C etc.  I am currently feeling blah about that though (and bitter if the truth is told).  I think about that song all about sunshine and lollipops with all the talk of loveliness and happy families skipping into school each day........  BUT! The parents of the children in the "autistic unit" were not invited to school info night, our kids had seperate orientation days for all but one day and that was the one where Jackson saw his friends from preschool and asked me why he was not allowed to join them. 

That was the moment with my heart torn in a million tiny pieces from the millions of tiny pieces it was already in from the millions of other times it's broken for him that I found myself questioning the decision to accept the supported place in the ASD class over the non supported place at the school where they ignorantly thought they would need to restrain him.  I realise though my "choices" were not really choices at all.  They were total inadequate crap and probably neither are really suitable. Now I am facing the task of sending my boy who was so very popular and accepted for his quirks at preschool into a class that announces he is different and segregates him from the "norm."  (Speaking of terms I despise.  The norm?)........ 

What have I done?  Was this decision really for J or was it so I (yes, me.. not J or maybe both of us but definitely me) felt supported and babysat by the teachers who DO understand ASD through the experience of far more than one previous student.

Did I really jump at this class where I thought the sheer numbers of teacher to student ratio would make all the difference to J's future or was it because I was tired....  Was I so tired from all the fighting to get him ready for mainstream that I was too burned out to fight DURING mainstream and blaze a trail for those who come after J at the school who would surely have learned pretty quickly their restraint course was a total waste of time and money and that with a few tricks and compromises we could have worked it out in the mainstream.......?  What was my reason?  I don't know.  I'm tired now as I write this.  Tired of fighting for every crumb thrown at special needs, tired of explaining everything in minute detail with visuals, tired of crying, tired of being bloody tired.  The ASD class in theory means the fight shouldn't be as bloody.  In my mind I thought it would mean things would be easier for Jackson (and me). 

He hates it.  He hates that squashy room.  He cries and has ferocious meltdowns (to the point where I wish I had done a course in that restraint bizzo).  Every time he has gone to the school for orientation he has told me he does not want to go to big school.  It was particularly brutal the day he saw his friends but was not allowed to join in.  I'm told he will be encouraged to play with his friends at break times and not to worry.  The teachers are lovely and I know deep down J will settle in but for now he hates it and I think we both feel a bit excluded by this choice. 

The school holidays have been frought with change for him and it's making things worse.  He finished up a 20 week ABI program (autism behavioural intervention FYI centred around school readiness ironically) so the routine was changed there.  His weekly occupational therapy appointments stopped over Christmas so the routine changed there.  We went on our first family holiday post ASD diagnosis (armed with many many visuals and "behaviour" strategies) but the routine changed there.  Christmas and all it entailed set anxiety levels HIGH.  We had a very big disagreement with my inlaws and boy oh boy did THAT set anxiety levels high in general family life as well......  Both boys would have sensed the tension during that without a doubt.  All that and his clear disdain for anything big school related. 

Buying the uniform was not pleasant...  MELTDOWN.  Buying the shoes was not pleasant...... MELTDOWN.  Reading the social story I painstakingly put together complete with pictures of his friends trying to explain they will be in the playground just not in his classroom......  Not pleasant.  MELTDOWN combined with furious ripping up of the social story.  No excitement.  Just meltdowns.  Heart ripping, collossal meltdowns that make me think I have made a heart ripping, collossal mistake.

I'm not writing this to drum up encouraging comments from anyone telling me it will all be ok and that he'll skip into school with a cheerful wave and life will be great.  I'm not writing it to drum up any comments really.  Millions have gone before me and have a wealth of experience with big school transition.  Many had terrible, heart wrenching experiences and many have had great, happy, feel good experiences.  I know what's ahead.  It will be hard at first.  The meltdowns are unlikely to disappear like magic.  It will take time...... 

I'm writing this to clear my head.  To mentally prepare and make room for the fortitude I need to walk in that damn gate on Wednesday with J and be calm for him.  To be a picture of confidence and positivity.  I'm just getting it out.  I am writing this to pour out the anger toward the unfairness of limited choices, funding options and poorly set up education systems that have shown me no evidence of inclusiveness to my son yet.

I'm writing this to have something to look back on (I hope) and wonder what on earth I was worried over when J is settled, happy and telling me of his friends and lovely days at school filled with new learning andsocial experiences.

I needed to write this so I can clear it all out and have space inside to be brave for my boy.

I need a way to turn resentment into excitement.  I want so desperately for us both to be as happy and excited as when we are swinging up high high higher together and laughing at the park.  J is always the one encouraging me to go higher at the park swings....  It's like it's a metaphor for our lives.  I really think it's him who encourages me just as much as I encourage him.  We are a team but our little team needs a coach right now to help us swing higher.  I hope I have not underestimated him in order for me to feel safe.  I hope this choice of schooling sets the pace at a nice comfortale level with the room to go high high higher as he grows to love big school.  I hope so much. 

I need a guardian angel just for one day to look after us both as I kiss my beautiful boy goodbye on the first day of a big exciting milestone to be at and for me to hold it together.

Don't worry though.  I'll be fine.  I promise.  I'll smile and be brave.  Hopefully my little guy will too as he reaches higher than I would ever be as brave as him to aim for. 

Good luck to my first baby on Wednesday and throughout school life.  I am with you my J.  Mummy is by your side all the way whispering in your ear that we can go higher together.

***Post note:  I wrote this early today and was not sure if I'd post it or not......  I was worried about my raw feelings about the name of the class in the school handout (which is not the same as it appears on the class door, it is called the learning support class on the sign) and my feelings about inculsiveness going out there for all to see.....  I was worried and unsure if I should post it or just keep it for me (I do that sometimes).  Before I posted it but after I wrote it I received a message from our beloved Vicki who I wrote of in my previous post (and many others).  Vicki was J's preschool teacher's aide who gave my son his butterfly wings and helped him out of his coocoon so to speak.....  Vicki has contacted the school and arranged to be in the classroom for J's first day to help him settle in and help the teachers deal with his anxiety.  She is doing this in her own time.  There is no funding for this and no one asked her to do it.  She is doing this because she loves my boy.  My guardian angel appeared.  I thank her.  My gratitude for her help in turning that resentment into real excitement is immeasurable. This is why I decided to post it it in it's unedited and raw form in the end.

A New Beginning

Wow!  Really?  August LAST year since I last posted?  How did that happen?

I'll tell you.  STRESS!  J is off to big school in a matter of weeks and the whole house is consumed with big school nerves.  His nerves to be precise.  It's been a long road towards big school with many twists and turns and so much other "stuff" going on that although all of our therapy goals until now have been working towards big school and we've been planning the occasion for 2 and a half years now....  Well even with all that planning and work, it's snuck up on us and kicked us all hard up the bottom (will blog about it all soon).

Amidst all of the work and planning our "normal" life has gone on and we've been on our first family holiday since.... Well ever I guess.  We've had family dramas (now THAT is a whole blog on it's own too but suffice to say, any elaboration on that will only serve to drum up more drama and considering the drama surrounding us all on a daily basis I'm not that keen on more of the stuff right now....  Perhaps another time).   We've said goodbye to J's preschool teachers (although Hunter will be heading to them in a few weeks so it wasn't really goodbye just passing on the batton).  So much.  Never a dull moment.

The goodbye moment between J's teacher's aide and I is hard to think about but I really want to write about it and acknowledge the momentous impact this woman has had on not only my sons life but my own....  Our whole family in honesty.

We are on the brink of handing our firstborn over to "strangers" at big school in yet another transition process (always hard in our world) and I've got loads to say about the worries we are facing about school and J's feelings and obvious lack of coping well with the process but for now I just want to reflect for a moment and tell you about the angel who gave my baby wings.

Two years ago I was feeling terrified about sending J into the care of "strangers" at preschool.  How quickly these strangers became friends, teachers, confidants, trusted allies and bearers of strong and sturdy shoulders to allow my ever present tears to cry upon so often on one of the harder days.

One of these strangers was a woman called Vicki.  It was Vicki who was assigned to be my sons aide. 

I remember sitting in one of those early IEP (individual education plan) meetings with the cast of thousands necessary to develop the individual education plan suitable for a 3 year old with additional needs to attend preschool.  So many goals and strategies to talk about and things to discuss with regards to what were our focus areas for J's development and preschool education.  You know.....  What were our priorities for J?  Was it toileting, behaviour assistance, academics, speech work etc?

I answered a little quietly and also a little embarrassed that perhaps my biggest wish for my sons "progress" was nothing to do with self help skills, verbal skills or academics really.

"I just want him to have a friend."

As I just typed that answer I gave back then the tears automatically welled up again.  I go instantly back to the place in time where I thought friendship was almost impossible for a child with an autism diagnosis.  I go back to feeling as though my world was inside out and shattered.  I go back to feeling sad for my son and so frightened about his future.  Sure, I still worry about the long term but for anyone reading this passage now who might be having those same feelings of despair I can assure you that place gets left behind to only visit occasionally as time goes on.

During that meeting though and at that moment I felt hopeless for my son.  I cried (I always do in those meetings and quite often other times too really).....  Vicki smiled encouragingly and promised me that goal would be met.  Of course J would have a friend.

I'm not sure I believed her totally at the time but I was very grateful nobody scoffed or laughed at what many might think were skewed priorities in an IEP meeting.

I remember dropping J off on the first day and Vicki was waiting for us with her open and warm smile, ready to welcome my boy and hand me the obligatory tissues.  I got out of there quick smart clutching those tissues so as not to have the breakdown I knew was coming in front of anyone.

I remember going back the second day and Vicki had the same open and warm smile but J had a meltdown that morning of collossal proportions as I left clutching a fresh batch of tissues.  Vicki phoned me within the hour and assured me he was fine, settled, happy and because she is the amazingly intuitive and special person she is, she told me he was playing with another child happily.  She said, he was making friends.  Nothing could have made me feel more assured.  It was that precise moment I trusted her implicitly and never looked back.  I knew my boy was in the right place with the right person looking after him.  It seems impossible that anyone would love your child as much as you do but I know Vicki would come close.  What more can you ask for when you place the trust of your child in someone else's care?

Over the two years of J's preschool adventure, there were so many highlights and great moments of triumph I'll never forget.  I wrote of one here about J's Easter Hat Parade that was one which will live on in my heart eternally.  There have been times at the end of term singalongs where J has bounded out the front of his class and taken up what I think he quite honestly believes is his rightful position centre stage leading the class in a favourite song and dancing away with an abandon I've only ever seen so happily abundundant in this child I am so proud of. 

Vicki happily took on EVERY suggestion all of the numerous therapists gave us to help with whatever speed bump in our road we happened to be dealing with at any given time.

So many memories.  Some just of collecting my boy at the end of a day and hearing about how happy he was or who he played with and how far he has progressed.  Every time, every day, Vicki took the time to fill me in on the details I'd missed that day whilst he was in her care.

The encouragement Vicki gave not only my son but our whole family is indescribable.  She deserves so much more than a mere thank you for her unwavering love and dedication to helping Jackson find a friend as per his nervous and shattered mummy's request so long ago now.  Vicki is part of a team of amazing teachers who are not doing a job.  They are changing lives.  The single best decision I can take any kind of credit for in my son's progress was to send him to a preschool where the staff are committed to the families not their "jobs."

My wish for J to find a friend came true.  Vicki was the best friend he could have ever had and seeing as we had 23 children attend Jackson's recent fifth birthday party I can confidently say J has many friends.  What a gift this woman and the team of teachers around her was to our family. 

I couldn't say any of this in person to our Vicki, or any of the preschool staff actually on the last day of J's time there. I had blurry, tear filled eyes and didn't say much at all. I just handed over the gifts and cards silently, quickly gathered up J's things and left with a wave.

I cried for a long time that night though. Vicki took the time to send me a message thanking me for her present. No present would ever be enough to thank the woman who who took care of my flappy little guy who's so beautiful and delicate in many ways. Fragile but so strong too and it's with the love and help from Vicki he learned to use his strength and fly.

I hope the gift we gave Vicki comes close to what she deserves in return for her love and strength.  I found it by what I think was accident.  It was one of those serendipitous moments that I just happened to wander past a shop I've never seen before that was filled with Peruvian silver items and butterfly jewellery called Nine50 Peruvian Silver.  Something led me inside that shop on J's last day of preschool and to the counter where I found a necklace with a butterfly pendant.  The butterfly's wings were real, pressed inside glass and encased in the exquisite Peruvian silver the shop specialises in.  I spoke to the owner of the store through tears (as always) and asked about the pendant.  She explained the wings were real (no butterflies are harmed of course and they are taken from them post passing on). 

What else could I give the woman who saw the metamorphosis of my child and our family?  It was so obvious.  We gave Vicki her own butterfly wings in that pendant and we hope whenever she wears it she realises how integral she was in bringing our whole family out of a cocoon of darkness and helping us see the butterfly we love so much with his great big wings and ability to fly!

She gave us so much more than we could have ever dreamed of. 

I still feel teary that J's time with Vicki is over but how blessed we are that she will remain a part of our lives as we send H into her care with confidence and trust.

A new adventure begins!

After..... Sometimes life is simply a carnival!

The Circle Makeover "After" Picture

(See the segment here: The physical after....)

Following on from a previous post Before and After I've provided the link above for those interested in how things turned out on the TV makeover front.  Against the odds, I agreed to don a dress (on national television) for the first time since my wedding day and allowed the make up people to transform me into someone who resembles a person who has given their appearance a second thought in the last few years.

The makeover was fun but in honesty it did not quite provide the liberty from my self doubt that I craved at the time.  The producers of the show billed me as "the Autism Representative of NSW" who was so embarrassed about my appearance that I am terrified to take the stage for my public speaking engagements...  Hmm... Not quite the way it is as I am happy to speak publicly about families living with Autism and woops, I'm not the "Autism Representative of NSW."  No such title exists.  I was appointed a Carers NSW Representative (See here) which is in addition to acting as the vice president of the Autism and Aspergers Support Group Inc.  It is the Autism and Aspergers Support Group Inc (AASG website) that is sponsoring me to speak at The National Summit of Parents Families and Carers in September and it is THAT speaking engagement I was nervous about attending in my usual uniform of jeans, sandals and a basic black top (none of which fit me very well due to weight gain over the last few years).  Anyway, as I said, it was lots of fun to be primped and preened for a day and to receive some fab new clothes! 

Nope... No emancipation from nagging self esteem and doubt from the makeover BUT the little niggles that I was worrying about a couple of posts ago are fading.  I think the experience of writing about my disappointment that we don't all support each other in this world of awareness and advocacy was somehow cathartic (I said advocacy as EVERY parent with a child of difference is an advocate.  Every single one of us who stands up to speak for our kids of any ability or who attempts to raise awareness for their needs is an advocate regardless of what any title means). 

So instead of providing the specific self esteem boosting purpose I thought the makeover would, it provided me with perspective instead.  That's not so bad.  I came home with my fancy new dress to a chorus of excited squeals from my boys who I had been away from for exactly 28 hours and 37 minutes during my TV sojourn.  There was an exclamation in unison of our usual family greeting, "Muuuuuummmmyyy!!!!! I'm so happy to see you, did you have a nice day?"  (Always always always the same greeting except for the insertion of appropriate name to scream in excitement for anyone who walks in our door... eg: "Daaaaadddddyyyy!!!!! I'm so happy to see you, did you have a nice day? or Naaaaannnnnnyyyyy!!!!! I'm so happy to see you, did you have a nice day?" You get the idea, even our greetings are that of the strictly rehearsed routine variety).

So there I was, in my fancy (and super expensive and completely impractical) new glad rags hearing the music to my ears that is the greeting of my incredible boys, "Muuuummmyyy!!!!! I'm so happy to see you, did you have a nice day?"  To which I responded, "I'm so happy to see you too beautiful boys and yes, thank you I did have a nice day today.  I missed you so much!  Did you have a nice day too?"

My boys have super hyper verbal skills which is not terribly common for children with ASD but they do lack the ability of reciprocity in conversations and often answer in a somewhat interesting way that is not necessarily expected and even sometimes does not make sense and that is very common in children with ASD.  This is why every single time a response of completely crystal clear sense making clarity comes from either of them I whoop with joy in my heart.

In response to my greeting, H responded, "U huh. I love you so much Mummy, a cuddle, a cuddle, a cuddle now please. A cuddle, a cuddle, a cuddle NOW please!" (Whilst nodding furiously that yes indeed he had a lovely day even in my absence).

J nodded and exclaimed, "Yes! I had such a nice day at preschool and Vicki helped me do a painting just for you (thanks Vicki, the world's most beautiful teacher's aide who always makes sure J's day includes a reminder of his Mummy)."

Then....  A thoughtful pause from J who watched me scoop my little H bunny up for that achingly perfect repetitively requested cuddle. 

More thoughtful pausing...... An additional comment from my quirky, little guy who sometimes seems to miss the crux of what we are saying to him and marches to the beat of his very own internal drum more often than not..... "Mummy what a beautiful new dress just like at the carnival! It's a so so so so very good and beautiful carnival dress Mummy just like you."

Ahhh. Just like at the carnival?  As I pondered J's assessment of my impractical and expensive dress gifted to me by Channel 10 which I would never ever have splashed out on of my own accord due to constantly worrying that the money I am spending on myself, even for a cup of coffee could be money that would be better put to my boys and their required therapies..........  Well as I pondered his unique view of my carnival dress (sorry Country Road), I realised that he was casting his mind back to our family day out at the local show where there was a Ferris wheel, rides, animals, colour everywhere, clowns and fun.  This day was described by J in the car on the way home as, "a fun very very very good, beautiful carnival."

For J, my pretty new dress of a deep burgundy teamed with a stunning  necklace of crystals, baubles and beads was his version of beautiful just like his day at the "carnival" and just like me apparently.

I think that is possibly the highest compliment I've ever received in my life.  One child desperately reaching for my arms that he'd missed for the entire 28 hours and 37 minutes I'd been away and squeezing me with gusto and a force I did not know a two year old was capable of and the other child likening my made over look to his mind's eye of the most beautiful thing he could think of, his wonderful day at his "carnival."

I smiled through wet eyes and kissed the top of his own beautiful head, still clutching my little H who was NOT letting go of our cuddle anytime soon it seemed.

So no.....  I did not instantly become a picture of bursting confidence inside and out and I did not forget the imperfect world that my children live in or the political and sometimes ugly world of gossip and pettiness that I was so upset over a mere few weeks ago.  I was searching in the wrong place to forget those things and searching for the wrong cure to remedy my battered drive to continue on in attempting to action change in a climate so difficult to stay afloat in with self doubt.

I've always known where to look deep down and I've said it in the past a million times over.  I have no idea why I forgot where the port in any storm is and I have no idea why I allowed those waves of shattered confidence to crash into me over and over again.  The source to heal any hurt or boost any doubts has always been safely locked in my heart.  It's so obvious that I'm tempted to flagellate myself over being so blind temporarily but will not waste anymore time on this as clearly it's time to move past things I cannot change and step back up to the responsibility I have to my boys who need thier Mum to be as proud of herself as she is of them.

The world my children live in is not beautiful to some and on some days it's not beautiful to me as I look at them from my own adoring eyes knowing that what I see is nothing like what the rest of the world will see without guidance and awareness.  Right now though and in the moment I walked through the door after the makeover that was to provide my self esteem the boost of beauty I needed at the time.... Well in that moment the world was beautiful just like the carnival to my boys.  That is the perspective I gained.

What I saw as the little old local show is a beautiful carnival to my boys and what I saw as an overweight, tired and confidence devoid mum is just as beautiful to them as they are to me.

Does anything else really matter?  I'm sure I no longer think so.

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.