A Penny for my thoughts......

I heard the story of Penny this week.  Penny is the sister in law of Professor Tony Attwood. see here  Penny has lived an amazing life full of adventure, humour, competence and now independence.  She has also lived a life of torment, misunderstanding, bullying, pain and the odd moment of strife.

Penny has Autism.  I am always fascinated to learn about the lives of adults with Autism and Aspergers as I am desperate to know what made the differences in their lives between being happy or miserable.  Of course I want to know the key differences so I can continue to help my boys achieve a life of happiness for themselves.  I've talked about this before but I'll mention it again now as Penny's story rekindled a spark of pain that I thought might be dulled permanently before I listened to Professor Attwood himself tell Penny's story at the conference I attended this week about Autism and Aspergers. see here for support if Autism affects you.

The pain I am referring to is the ache in my heart I wake up with every morning that increases some times and decreases to the point of being barely noticeable anymore other times.  It's quite intense at the moment.  The ache is throbbing and causing quite a sensation on my personal scale of pain right at this moment but I have been hanging out with this ache for quite some time now and the ache and I understand one another well enough to know that it's temporary and will fade away for a while again soon.

Why does my heart ache?  Oh you know, just the usual.....  My childrens lives are pretty much guaranteed to be fraught with difficulty and misunderstanding and possibly (although according to Prof Attwood, definitely NOT possibly) bullying.  It still hurts me that they will experience hardship because people do not understand them the way I do and that some people will not see the strengths, uniqueness and joy that I celebrate.  Like I said, just the usual.

So here I am, sitting in the much anticipated Tony Attwood conference expecting to be enlightened with the answers to keep my boys safe and free from all the concerns I've already considered over and over and over again.  I received no such enlightenment.  I did realise though that I was at an advantage as a mother in that room full of people hanging on Professor Attwood's every word that perhaps not everyone else in there was.  I looked around and saw the pain in other mum's eyes as he outlined the increased risk of certain bullying, increased risk of being prey to sexual, financial and other equally repugnant predators and the certainty that our children will feel unavoidable anxiety, exclusion and difficulty.  I realised that unlike many of the other mums in the room listening with the same pain I feel in my way too soft for my own good heart....... I realised that unlike some of them, I had already considered it.  I already knew simply by instinct not by books that my kids face these challenges.  I received no answers as to how to keep them completely, utterly and definitely safe from it but I did receive enlightenment on how to help them rise above it, move through it and become independent and mostly happy adults like Prof Attwood's sister in law, Penny who now lives independently and happily.

During a two day conference on all things Autism and Aspergers presented by Professor Tony Attwood who is widely considered to be a world expert on all things Autism and Aspergers I can reveal the moment I knew my boys will be ok and the most valuable piece of information in an information heavy two days.....  When the good professor came to the end of Penny's story and I was quietly wiping my tears as I listened, transfixed by her tale of triumph he touched on the reasons he believed (as a world expert on Autism and Aspergers) that Penny's story was indeed one of triumph...........  (and I quote) "Her mother's continued support, love and unconditional belief in Penny, freedom to be herself at home and a sense of humour (shared by her whole support network)."

My quiet few tears I was already dabbing at discreetly turned to freely flowing rivers of salty tears that I had trouble stopping as the relief that I felt to realise I already had the so called keys to success was absolutely overwhelming.  Anyone who reads this blog, knows me personally or even those who have commissioned me to write the special stories of their own special kids knows my unwavering support and belief in my boys and that of all of our kids of mystery, difference and indescribable inner beauty with souls of such purity it's humbling for the rest of us.  You all already know my passion to let my boys be who they are and the celebration of their differences our house is filled with daily.  Most of you would have already gleaned my family's life is viewed and lived  with a very healthy dose of humour entwined with a drunkenness of love for these awesome individuals I am lucky enough to share my unexpected life with.

Although Penny's story stirred up that pesky ache in my never quite healed heart, Penny's story also filled the same old dodgy ticker with hope and pride in not only my boys (all three of the quirky fellas I live with which includes the hubby) but pride in myself that regardless what any of the experts say in their often conflicting advice.....  Penny's most powerful "intervention" was the love and support of her mother.  Now this is a super power I already have.  My boys just may wind up ruling the world if their success relies mostly on my love and support of them.

Thank you to Penny for allowing Professor Attwood to share her story and give this loving and supportive mother the gift of hope and confidence.  I wanted to share the moment here so that all the other mothers out there like me could feel proud of themselves today too.  I'm privileged to be living this life with the support of each and every one of those mothers and they know who they are.  The support we give each other, helps us support our kids and helps ease those aches we all carry about in our hearts on the days it hurts just a bit too much.

More soon...  I promise but for now  must get on with the most important job I have.....  unconditionally supporting and loving my boys.

Get ready........ To Wiggle!

The best news ever!  Well it's the BEST NEWS EVER in our house for H bunny anyway.....  We heard through our mummy grapevine last night that the one, the only, THE WIGGLES are touring Australia through April and May.  Not only that, they are playing at a venue only 20 minutes from our house!  The excitement in our house is palpable.  The nerves are at fever pitch, the squeals of delight that Sam, Anthony, Muwway and Jeff will be playing all of our favourites and the practicing of all of the hot potato moves are peaking around here since we heard the news!  Of course, I'm not talking about how H is reacting to the news...  He's totally clueless his idols are on their way to town.  It's me, the nutty Mummy losing the plot in concert anticipation!

I simply cannot wait to have a morning of Mummy and bunny time with my delicious little boy and surprise him with his biggest heart's desire and take him to see not THE Wiggles but as he calls them, HIS Wiggles.  It's going to be so fantastic to share a couple of hours watching H's reaction when Muwway plays his guitar and when Jeff get's woken up by the noisy masses.  Well at least I hope it will be a huge success and a real opportunity to provide H with his own time filled with his own interests.  There's always that danger of sensory overload and with H that will show itself in the form of shut down and terrified shaking but if we stay at home and miss something as momentous as The Wiggles because of meltdown/shutdown risk then we would never go anywhere right?

So we will bravely buy tickets and excitedly make plans and show H a social story about going to a Wiggles concert and of course we'll practice many more of our moves and dance around our noisy lounge room to all of our favourite songs and I will very much look forward to our day out together.

I will NOT focus on the events of the past that make this event so bittersweet.  No I will not.  I will not obsess over the memory of buying front row tickets for J to sit in the coveted "Hot Potato section" at a similar age to see The Wiggles and then having to give them away to a friend and her son because it had become increasingly apparent that J would never cope with such a high energy and noisy environment. We were still unaware as to why he covered his ears, screamed and ran away in crowded situations so we made excuses to ourselves like, "Oh, Mummy is soooo pregnant (with the H bunny, 37 weeks) and it would be very uncomfortable to go and J does not know we have those tickets anyway..."  And so the excuses went on.  So anyway, when those memories creep in and send the mother guilt pangs straight to my always partially broken but also love stuffed and healing heart I will instead focus on how H will enjoy his day and not on yet more guilt that we will have to keep the day a secret from J who unfortunately would still not cope in such a highly sensory environment.  Whilst there is the risk of H becoming overloaded, the chances of him absconding, tantruming or screaming is slim so if it does become too much for H, I can quietly take him outside and allow him to regroup.  This would more than likely still not be an option for J.

So in an effort to NOT focus on all of the guilty pangs, I'll make more excuses to myself and remind my guilty little heart that, "the concert is on a preschool day for J anyway so he really isn't missing out..."

I'll remind myself it is really H who soooo love HIS Wiggles and he deserves some time to himself with Mummy and that normally we choose outings that J would cope with and show an interest in so it's only fair we choose one especially fit for H's capabilities and favourite things.  Right?

Good grief.......  Is this parenting thing EVER easy?

So whilst I'm definitely NOT focusing on any of the bitter I will certainly concentrate on only the sweet.  The sweet little boy I will be spending some wiggly time with and his sweet smile when he sees HIS beloved Cappen Feavesard (Captain Feathersword) and HIS Dowafy (Dorothy) and HIS Wags (Wags :-)) and HIS Henwy the Ocpussssssss (Henry the Octopus) and HIS WIGGLES!  That's the sweet I WILL focus on.

Sweet indeed.  I'll let you know how it goes and just how sweet it was after wards.

*******
The images on this post are all pages from H's Story hand made with love by me
and
My Special Story Books for Special Kids

A Kingdom far far away from stereotypes.

Yesterday I shared a speech I'd delivered a few months ago which covered among many other things the things that alerted me to investigating the development of my J (who at the time of the speech was the only one of my children to have an Autism diagnosis but of course we now know that Hunter also has a similar diagnosis).

Those who follow my blog will know I am the writer and creator of My Special Story Books for Special Kids http//myspecialstory.weebly.com and that the books I write highlight that our kids are so so much more than their diagnosis.

After yesterday's long post outlining the whole life story and the journey we took as a family to wind up here I thought I'd keep this post simple and as short as humanly possible for a waffler like me.  J's diagnosis changed our lives as a family on the 8th of August 2008 (080808).  A date I'll never forget.  Who were we before then?  Who was he before then?  Who were we all on 070808?  Who did we become 090808?  A piece of paper with the word Autism written on it by a childhood development "expert" had redefined us all, not just my beautiful boy.  I didn't know much more about Autism back then aside from the stereotypes we are all familiar with like Rainman for example.  Obviously I know more than Rainman now and because I realised my children are totally different to Rainman and the boy in the movie, The Black Balloon and any other film made about Autism, I created my stories to raise awareness that ALL children are different.

In line with the books I love to write for the kids I love to write for I am going to list all the things that make my boys who they are outside of their diagnosis.


J is a hurricane of energy, noise, enthusiasm and noise... Did I say noise?  He loves to run, climb, dance, jump, slide, yell and tackle life in a blur of activity and speed.  He loves his trampoline, his computer and Thomas the Tank Engine.  Although I suspect he is starting to grow out of kind, affable and gentle Thomas as I notice a developing interest in the old fashioned cartoons emerging....  I think Scooby Doo and Tom and Jerry may just be the new favourite shows of choice these days and Thomas only gets a sneaky look in when my J feels a little bit anxious after a busy day at preschool and needs the slow and steady style of kind accepting Thomas always triumphing over the troubles and tribulations of a day on Sodor.  Obviously he is a very wise boy who knows just what he needs when looking for a metaphor for life if things have been a bit difficult to understand over the day for him in his world of confusion about the social politics amongst the other small folk he goes to preschool with.

J is bossy in very charming and endearing way that makes no sense but I assure you is true.  He wraps women (even the smaller preschool variety) around his long, fine fingers that reside on his lean and lanky little boy's body with a mass of dark curls on the top of his very pretty head and the widest smile in the land.  He is joyful, funny and very very clever.

Right at this second he is on top of the dining room table which he of course climbed upon in his bashing and crashing style and directing orders from atop his self proclaimed "mountain" because he "is king of the castle" in his imaginary game he is playing with his little brother who has been deemed a lowly pleb who is only allowed to enter the pretend castle after performing a myriad of peasant duties like fetching Daddy's cap to put on J's head as the crown for the game among other things.


Which brings me to H.  Ah my H.  He is such a complicated cat.  I blogged about his emerging independence a few days ago so have a look here to find out more about that.  For the most part H is a shy boy with big brown eyes and fine light curls that make him look angelic which pretty much allows him to get away with ANYTHING!  This child looks like butter would not melt in his mouth and he knows it.  It is impossible to fathom that he could ever be "naughty" which is exactly why he is so talented at being just that and making everybody who witnesses it giggle with delight when he does too in a proud moment of getting away with EVERYTHING. 

H loves climbing, riding his trike down our hill, cuddles, his teddy, his soft toy bunny and most of all he LOVES loves loves LOVES Sam, Anthony, Murray (Muwway as he says it) and Jeff.  H LOVES The Wiggles.  Between fetching crowns for his brothers royal head and bringing various snacks to King Jackson, Hunter is dancing and singing along to the musical stylings of The Wiggles with great gusto and obvious adoration.

It's been such a lovely relaxed morning observing them being who they are through my eyes that see beyond a label.  I truly hope that by raising awareness more people will try and look a bit deeper through their eyes too.

So I'll wrap it up now and say a quick apology for waffling again and not keeping this short as promised. That's what makes my boys so much more than their diagnoses.  That's what makes them unique, different and anything but a label.

Uh oh.....  Poor peasant H is being threatened with exile from the kingdom now as it seems King J has not received the latest request of his fiddlers three or whatever other equally impossible desire in a kingly or timely fashion.........  Just a pair of typical brothers really.

Looks like the Kingdom needs to appoint a diplomat in the form of a Mummy to sort out citizen relations.

Bye for now. :-)

A celebration of my beautiful boy and an opportunity to share it ....

Hello all and sorry I have been a little bit slack in keeping the blog up to date.

I have had a whirlwind of a few weeks which I will write about very soon but in the meantime, I found out that a wonderful charity and support service is using one of my writing pieces during their gala dinner/ball coming up soon.  I am of course honoured and would like to take the opportunity to thank the Autism and Advisory Support Service www.aass.org.au for supporting me in many ways over the last few months and especially by supporting me and my writing work.

The piece they are using and reading out during their Ball is a poem I wrote for my son on his birthday last year and it is with great pleasure that I include it in tonight's blog for the parents of special kids like mine to enjoy.  It was first published in Sharisa Joy's Voices and Choices of Autism online magazine (of which I am a regular contributor and on the panel of advisers) .  See links and copyright info below and please take the time to enjoy the poem.  It is not technically perfect or even good from a writer's perspective but boy oh boy it is written from my heart.  

Happy birthday to my son

In only four days
We will clap and we’ll sing
To honour your life
And the joy that you bring.

I cannot believe it
Time. Where has it gone?
As I write this
I’m watching you play in the sun.

Not so long back I birthed you
And hard did I fall.
I fell so in love
You were my, everything, my all.

We’ve bonded the way
Of the movies and books
We cuddle and kiss and we
Share special looks.

Why special they ask?
It’s the same for all mothers?
Not this one I assure
No I’m not like the others.

The ride we’ve been on
And shared ups and downs
This last year tumultuous
In a spin round and round

The ups oh so high
And the lows, so bereft
So sad was this Mummy
When I thought you had left.

Your eyes lost their way
Could not find the old light
But your heart and your strength
Fought so hard and with might.

I heard not my name
In your world it was lost
How could I find it?
Any bridge I would cross.

The bridge we did find
You invited me back
And I fought alongside you
And we found our own track.

Our own special way
No not like the others
A Mummy and Daddy
And 2 special brothers.

We know you are happy
Your world it’s so safe
Your spectrum of love
What a wonderful place.

I love that you visit
My “typical” place
And find such unwavering
Light and love in my face.

Our eyes are together
You look and you smile
So honoured and grateful
You stay for a while.

For granted I take
Nothing, no not a thing.
I savour each word and look
My heart full when you sing.

I’m not like the others
You taught me much more
Would I have learned no conditions?
Without your lessons, I’m not sure.

The joy you have taught
Where I thought there was none
The warmth and the love
And our laughs and the fun.

I’m not like the others
That know, not the pain
We’re different my son
No we’re not the same.

This hurt me at first
But not anymore son
If love could be ordered
You would still be the one.

The one I would order
No change would I make
My heart chooses you
If not you, it would break.

Our journey unique
No, we’re not like the others.
Please know though I’m happy
And don’t envy another.

The gift that you are
And continue to be
Is more than I asked
Yet you gave it to me.

Your birthday so close
These words a small gift
In exchange for your strength
And your love makes me lift.

I am better because
you were born my dear boy
You raised up my soul
You are my light and my joy.

Happy Birthday J. I love you. Thank you for making me a better mother to you and your brother and thank you for making me a better person.

You continue to amaze me every day.


I love you, I love H and I love your Daddy.  What a lucky family we are to have each other.


Direct link to magazine: http://autismvoicesandchoices.weebly.com/uploads/2/7/1/9/2719366/volume_i_issue_5_october_2009.pdf_2.pdf

With the very kind permission of the publisher I am able to share this piece.

Volume 1, Issue 5 October, 2009
Sharisa Joy Kochmeister, Publisher and Managing Editor
Jay Kochmeister, Copy Editor
Copyright 2009: All rights are reserved under copyright laws. No part of this magazine may be reproduced in any form - including written, mechanical or electronic means such as information storage and retrieval systems, without the express written consent of the publisher.

This magazine is a great read for anyone who is living with or affected by Autism. I am a proud regular writer for the publication and have recently been appointed to the panel of advisers which is a huge honour.

For further information about how to subscribe to the magazine or join Sharisa's Yahoo group please contact her or Jan Kochmeister here on Facebook. Subscription is free.

Link to Facebook fan page below:
http://www.facebook.com/profile.php?&new_box_added_id=2318966938#/pages/The-Voices-and-Choices-of-Autism/105349197798?ref=ts

Chantelle is a proud and happy mum to J and H and wife of Andrew. J lives on a quirky, colourful and unique spectrum which is more commonly known as living with Autism. Chantelle is passionate about raising awareness, volunteers with various Autism Services (NSW, Australia) and is the Vice President of The Autism and Aspergers Support Group Inc (NSW, Australia Hawkesbury region). Chantelle is also the creator of My Special Story – Special Story Books for Special Kids, a writer, an advocate and friend of Sharisa Joy Kochmeister and all those living with Autism. http://myspecialstory.weebly.com/

Just Us

Wow!!! It’s been over a month. Sorry about that. School holidays took their toll on my writing juices I’m afraid. In fact, the school holidays took their toll on everything about me! Sheesh! Meltdowns. Lack of routine, Occupational Therapy intensive holiday programs, charity work, paid work, launching businesses, being deemed inspiring by the lovely Heather James from Inspiring Mums: http://www.inspiringmums.com.au/interview_cj.html, Christmas, New Year, resolutions made (and of course since broken), meltdowns... did I say meltdowns?

Oh good grief! This time last year I sat down after dropping my beloved firstborn son at preschool after lovingly writing a special story for him so others could understand his needs, issues and more importantly his strengths and abilities rather than disability. I sat down and sobbed for the hole in my heart it left to leave him with strangers.

Those same strangers are now valued and adored honorary members of my family and more importantly J’s special friends as well as his preschool teachers. I thought I could never find another who would love my child the way I do or who could look out for him the way I do or understand him the way I do. Look, they probably don’t love him like I do or look out for him in the same way or even understand him the way I do. I’m his mum. No one is going to understand him the way I do. BUT!!! The teachers at his preschool have accepted him, they support him and they do love him and applaud his achievements. They tell me excitedly of new milestones and of the day’s activities and they make sure our family is embraced with open and welcoming arms.

They understand on the bad days and they cheer on the good days. I think the fact our family was so open about Jackson having special needs and even went to the extreme of placing his My Special Story for Special Kids book on the sign in desk for all to read helped us settle into the preschool better than if we had have kept it private. Being open really helped other parents understand Jackson was tricky but oh so much fun to get to know if you make the effort.

So anyway, I sat down and sobbed this time last year with a broken heart about my baby going off to preschool. After the school holidays from hell we just had with a child so clearly struggling to remain occupied and so clearly struggling to find a sense of security in a world of no routine and no preschool I think I went a bit mad. Honest. I went a bit loopy and stir crazy. I was stuck in this land of limbo where I couldn’t really take the kids out and about much because of the mammoth undertaking it is to manage them and their issues out in the world on my own but I also could not stand being stuck at home day after day after day during the seemingly endless holidays.

Soooo..... It’s with a little guilt I admit to wondering if it would be logistically possible yesterday on first day back at preschool to drive down to the gate, slow down enough to nearly be at a stop and fling J at the preschool with a cheery wave and a shout out of, “All yours!!! Thank God the holidays are over!”

I admit it with a touch of mother guilt but I do admit it. I was sooooooooooooo soooooooooooo sooooooooooo pleased to be able to spring out of bed (I don’t normally spring anywhere, especially out of bed) and sing a good morning song to the boys (I also do not regularly break into song) and announce it was preschool day!!!!!!! “Wooo Hooo.” The children were understandably quite puzzled by the spring in my step and newfound love for singing our morning routine and my own squeals of excitement when 8.30am rolled around which signaled time to hop in the car and go to preschool.

They were puzzled but sort of amused I think and drop off went quite well even though J was going into a new room with a new teacher with new adventures for the new year. It went pretty well I think because of the effort I put into making him a story all about returning to preschool with pictures of the new room, new teacher and new adventure possibilities so he was prepared. I’d also revamped his My Special Story Book for Special Kids with updated pictures of him and amended parts of the book like how he behaves in a meltdown or when anxious as all of those things had altered over the course of the previous year that were in his previous book.

I picked him up at 3pm, refreshed from a day of not hearing and seeing his obvious boredom with being at home and I asked him all the questions I usually ask and not often get an answer to because of his processing difficulties.

This is the moment I later realised he had matured and had progressed again whilst we were struggling through the holidays in spite of me thinking I was inadequate educational and developmental stimulation for his needs. I asked, “Did you have a good day today beautiful boy? Tell me about what you did.” Excited and loud response, “I had suuuch a great day and it was exciting and we read a story about trains and owls and sang about a starfish and I played chasings with Max and Cooper and played dress ups with Zoe and Sage and I put my hand up for Jacqui when she called J and I did painting and sandpit.”

Wow! Big response! Lots of words! Not that big a deal about the lots of words as Jackson is extremely high functioning and tends to out talk any kid whether typical or with Autism and could talk under water with a mouthful of marbles. What was a big deal is this... For a whole year, I’ve been relying on a piece of paper J’s teacher’s aide gives me at the end of each day called, “Today I...” Vicki (teacher’s aide) thoughtfully hands me a little rundown of the days activities written from J’s perspective about what he did that day and who he played with because this woman and the entire staff at the preschool have sensed my yearning to know that my baby is making friends, is accepted and is enjoying his day and feeling safe. Some day’s I’ve asked what he did and gotten a random response of nonsensical activities not listed on the “Today I” sheet and some days I’ve gotten no response as J has been too overstimulated and overloaded to respond to anything after a big day and some days I get one or two things he did and they are listed there on the sheet so I know he did do them like he said but he never really lists them in a typical way or in a clear way for others who do not understand his quirks to comprehend. I’ve had in the back of my head for some time that I may have to accept that I will never get a day of so called perfect or even logical recall from him and that I will simply not be included or invited into his day via this medium of conversation us neuro typicals love to engage in more so than those on the quirky spectrum.

I nodded and exclaimed it sounded like a fun day and thought to myself I must look at the “Today I” sheet and see if any of his listed activities were on there and have a look at what he actually did according to my trusty scribe Vicki.

I forgot to check it until this morning on day 2 of spritely springing about getting ready for preschool. I glanced over it and stopped springing around immediately. My heart leaped to my mouth and tears sprang up out of that silly springing mood I was in...

Remember what he said about his day......?

 “I had suuuch a great day and it was exciting and we read a story about trains and owls and sang about a starfish and I played chasings with Max and Cooper and played dress ups with Zoe and Sage and I put my hand up for Jacqui when she called Jackson and I did painting and sandpit.”

It was all there in black and white on the “Today I” sheet. My baby had treated me to a little glimpse of a conversation all the “other parents” get to have with their kids. The conversations I was so envious of but had accepted were just not in our future and moved on to enjoy our own special bond and special way of understanding one another without the typical conversations.

It’s one of those moments I shall treasure forever. A little treat my baby gave me with no expectation and no prompting and no pressure.

It was just us having a chat after a “typical” day at preschool with his friends and teachers whom we both love.

Thank you J. xo

All Lit up inside and out!!

Ok..... so here I am, officially the mother of 2 quirky little Spectrumites putting one foot in front of the other and taking it one day at a time (see last post).

Since I last poured my heart and soul out to the universe I've been busy. Very busy. My feet are barely keeping up one step or one day at a time.. The pace is on the hasty side indeed.

I've started an awesome business development course with a bunch of pretty groovy mummies who range from yummy to funny and sunny and definitely not dummies! I am hoping this course is the gentle nudge my rear end needs to really get My Special Story Books for Special Kids into preschools, schools, respite centres, early intervention providers, family coffee tables of the beautiful kids I write about...... oh and maybe get me onto Oprah before she "retires" in a little less than two years as my newly constructed "vision board" predicts. No point dreaming small now is there?

Already a woman of many ideas, I bumped noggins with a dear friend with even more ideas who is on a parallel life plane to me about how I could make a difference to raising awareness for my support group and our families. seems to me Charities tend to "rob Peter to pay Paul" 9 times out of 10 when coming up with fundraisers for their cause and I just could not stand the thought of sitting through another trivia night pouring all of our own money back into our own cause.... Crazy!!!

Crazy indeed. With less than 3 weeks to go until Christmas my friend and I devised the beginnings of a very crazy idea and I contacted my local newspaper with my grand Autism Awareness plan never expecting them to help me get it off the ground in such a tight time frame. Give me strength people. The paper loved my pitch and I now find myself with only 2 weeks until the fat bloke in red shimmies into my house through the many holes in the roof.... and up to my neck in getting my community to "Light Up" for Autism. Yes... "Light Up" their Christmas lights for Autism.

I sent out a media Alert to every Public Relations company I've ever crossed paths with in my previous life as a PR consultant and every local business who have an email address listed on ANY mode of search engine or web directory I could find and I now have thousands of dollars of prizes to give away in return for the community Lighting Up for Autism and raising some funds whilst onlookers admire the elaborate light displays........

I'm supposed to be out Christmas shopping, nurturing the developmental, emotional and nutritional needs of my kids, juggling appointments for their Autism related therapies, growing a business and completing a business course (somewhere in there I think I'm supposed to maintain a marriage but let's not get too bogged down in details now shall we?).

So how did I win over the newspaper and the sponsors? I told them my story and a few stories about statistics, isolation, sensory issues and flashing Christmas lights then somehow tied it into raising awareness for some remarkable kids. Here's exactly what I told them all. I'll tell you now too and I also invite you to Light Up for Autism in any way you can. You can register at: http://www.autismsupport.org.au and rsvp to the event on facebook at: http://www.facebook.com/#/event.php?eid=214972640942&ref=ts

So here's the media alert that attracted just enough attention to find me now drowning in a sea of Christmas lights Ellen Griswald style and sending me just a bit more crazy than before:

MEDIA ALERT!!

THE HAWKESBURY LIGHTS UP FOR AUTISM AND RAISES FUNDS, AWARENESS AND SPIRITS

You can tell Christmas is approaching when you notice the flashing lights and decorations adorning houses with the globes and colours and start to feel that community spirit and cheer we all love so much during the festive season. Most families eagerly anticipate the lighting of the Christmas lights, the Santa photos and the impending arrival of loved ones over this busy time to share the festivities with and most kids cannot wait for school holidays to while away their time and wait for Santa to arrive with his sleigh full of presents.

For children with Autism, however, Christmas, the change of routines, the busy feeling in the air, the carols playing loudly in the shopping centres and the lights adorning every second house on the street can be confusing, overwhelming and cause anxiety for themselves and their family members.

The official rate of prevalence of Autism is recognised at 1 in 150 children being diagnosed but recent studies around the world and here in Australia have found that up to 1 in every 91 children are now being diagnosed with an Autism Spectrum Dis¬order with the rate rising every year.

The divorce rate of parents of a child with Autism is estimated at between 80-90% and the rate of depression is also higher than usual for these parents.

The statistics surrounding Autism and associated disorders can make life for families with experience living on the Autism Spectrum appear grim, hard and hugely challenging. Whilst this can definitely be true some of the time, The Autism and Aspergers Support Group Inc would prefer the members of their community to band together in a celebration and display of unity and awareness for their families this festive season. The group is running a “Light Up” for Autism campaign during the month of December. On Sunday 20 December 2009, residents of the Hawkesbury and surrounding suburbs are asked to collect donations from the cars passing by to look at their elaborate Christmas light displays to assist the Autism and Aspergers Support Group Inc and raise awareness about Autism.

Chantelle, group vice president explains, “Because many people on the Autism Spectrum have sensory issues that can be heightened by lights, sounds, smells and movement we invite our friends throughout our community to “Light Up” for Autism this year and help us raise awareness and funds for families who are at risk of social isolation because of the anxieties our children experience during typical social occasions such as Christmas. The Autism and Aspergers Support Group aims to host more family days out during 2010 so our families can go out together and be free of judgment and the usual stresses that can occur when one of our kids go into “meltdown” mode if they are overwhelmed or having trouble communicating what their feelings are. My sons, both of whom have been diagnosed as living on what I call the colourful world of the spectrum, love the lights and are totally mesmerised by them so I thought it would be a great opportunity to raise awareness for these remark¬able individuals who need a little bit of extra understanding and help to reach their full potential.

We would also ideally love to host events such as a Mums retreat and a Dads Golf Day which are commonly on the wish lists of our parents but rarely realised due to the frequency of appointments and huge costs of the therapies our kids need to assist in functioning and communication for their futures.

With diagnosis rates rising every year it seems, we would like to take action and show the positives of our kids and at the same time actively participate in the festive season with our families and the greater community through the “Light Up” for Autism campaign.”

This year The Autism and Aspergers Support Group Inc will be sharing funds raised through “Light Up” for Autism with Hawkesbury Early Childhood Intervention Service who provide an invaluable service to children in the Hawkesbury area with Autism and other special needs.

The Autism and Aspergers Support Group Inc provides information, support and guest speakers at their monthly meetings and welcome new members at any time.

Since Chantelle’s first son, J was diagnosed last year, she has started a special needs resources business called My Special Story Books and specialises in creating personalised story books for children with Autism and other special needs that celebrate the child’s joy, strengths and abilities rather than the disability or diagnosis. The stories also help the child’s support network understand each child’s practical and unique needs. During the month of December a percentage of all profits from any product purchased on the My Special Story Books website will be donated directly to the Autism and Aspergers Support Group Inc in support of the “Light Up” for Autism campaign.

Two weeks ago Chantelle’s second son was also diagnosed as having an Autism Spectrum disorder so her family finds themselves on the roller coaster that is early intervention for a second spin around but this time they feel nothing but hope and positivity for H’s future as he is already showing signs of progress and improvement just like his big brother before him.

There are a variety of ways people can participate in this event:

Households are asked to register their lights via the My Story website to win prizes for “best lights” ,“most money raised.” Registration for the event is free.

Those who cannot register a light display but would still like to participate can also register as having a Christmas party and collect donations from their guests that way so they will still be eligible for event prizes or make a donation directly to the group bank account or post a cheque or money order to the group’s post office box.

Interested participants will receive an information kit upon enquiry and fundraising kit for the event upon (free) registration.

HERE WE GO AGAIN!

Hi again and welcome back to the My Story blog.

Last time I wrote I told you all a little of my story so far and why I am committed to writing special stories for kids who need help finding their own voice with which to share their own joy.

Since that last blog, nothing has changed but everything has changed at the same time. I am still committed to raising awareness for amazing and beautiful kids who need help to share their story and help others understand them better. That part has not changed.

I am still the mother of a son with Autism. That has not changed. What has changed though is that not only am I the mother of one son living on the Autism Spectrum, I am now officially the mother of two sons living on the spectrum.

My beautiful son H has now been diagnosed as joining his brother on the Autism Spectrum so I find myself back in a place of uncertainty about where my journey will take me next and more importantly where it will take my boys.

What does this mean for my family? What do we do next and will we be ok? All questions with no answers at this stage.

The diagnosis was made yesterday and I was numb upon hearing the words again. It is different this time around though. There is not the same devastation as when I heard those words for Jackson, as this time I have some experience with Autism and I am very much aware of the lifelong possibility and no longer see it as a lifelong disability. That said, I am still wondering how I will find the strength to stand up and fight for both sons, advocate for both sons and stop the constant worrying about both sons. In honesty I was feeling exhausted with the overwhelming task of all this for one son. How will I do it for two?

I will heed the advice of those who have travelled this path before me and those who have counselled me along the way so far. I will take it one day at a time. I will concentrate on what can be done now. I will limit the amount of time each day I dwell upon what will our lives look like in twenty years, ten years or even five years? The truth is no one knows what their life will look like in five days time, let alone five decades time as you simply never know what is around the corner. Anything can happen. I will put one foot in front of the other and continue to be my boys’ biggest cheerleader and take on the responsibility with gusto and pride.

I will continue to find passion and joy in my work and continue to tell these stories for these kids. Do not think for a minute though that this work I do is selfless. In fact it’s very selfish. The feeling I get when I hear someone comment that they feel as though they understand one of the kids better after reading a My Story book is indescribable. I am lifted up beyond words to know that a child is being seen for who he or she is rather than what they are or are not. When a Mum says thank you for finding the essence of their child’s personality and their strengths and sharing it for others to enjoy is the best feeling in the world.... Well actually it might be the second best feeling in the world. The best would definitely have to be cuddles from my brilliant, brave and beautiful boys. I am a very lucky Mummy. I get many many cuddles AND I get to do work I am truly passionate about.

I will be sharing more of my personal and professional journey with you over the coming months so I hope you enjoy the ride.

Chantelle. xo

Hi all and welcome to the My Special Story Books blog.

First time blogging so this will be an adventure indeed.

I’ve uploaded some info me, Chantelle, so you can learn about why I do this work and why I love it so much.

If you are visiting this blog and/or my website you will already know how committed I am to raising awareness for children with special needs or as I call them, special kids.

The purpose of My Special Story Books is to inform the child’s support network about the child’s individual needs, raise awareness but most importantly focus on showing that every child is so much more than a diagnosis. I like to bring the attention back to the abilities of the child rather than the disability and remind the reader they are dealing with a child who may have some challenges but is not defined by them.

Since creating My Special Story Books for Special Kids I have had the pleasure of writing many stories for some truly remarkable kids. I am very lucky to have found such a wonderful way to spend my time.

I would like to say a very big thank you to the parents who have entrusted me to find the true essence of their child’s story and share it for them. I hope to write many many more.