What's love got to do with it?

For a change of pace I thought I might write about my relationship with my beautiful boys' father tonight.  He rarely gets a mention over in blogtown and more often than not resides in "dogtown" which is a mythical place I've created in my mind much like the proverbial doghouse many of us girls refer to when the hubby has done wrong... Or just annoyed us a bit.......  For whatever reason of the day.... ok minute.....  that we've...... ok then.... I've decided warrants a one way ticket to "dogtown."

I heard a statistic that parents of children with Autism have an 87% likelihood of divorce.  I'm way too tired tonight to trawl through the internet or any of my numerous Autism books to find exactly where that statistic came from but even if it's wrong, it's pretty close.  It's well recognised if it's not 87% it's at least a VERY high divorce rate in our families.

I decided to write about A tonight because there are days..... ok..... weeks sometimes that go by and I don't have a conversation with him.  We talk about the kids and what's for dinner and even stretch to talk about what's on TV but I'm talking about a real conversation of substance and depth about what's going on in our worlds that have become almost separate.  He works all day and I do the "kid stuff" and run the "house stuff" and stuff as much advocacy, awareness raising and ignorant arse kicking as I can into any day before scratching my constant writing itch most nights and collapsing into bed in the wee hours long after Andrew has toddled off to snore loudly until he gets up at the crack of dawn to work all day again.  That's our existence, oops, I mean life.  Anyone who is reading this who has a child with any kind of diagnosis will be nodding their head right about now because those of us in our exclusive club know how easy it is to get caught up in the world of only discussing what appointments we have to be at, what paperwork needs to be signed for whatever tiny skerrick of funding the family is trying to attain and who's turn it is to change a nappy or get up to whoever is restless in the night because someone is ALWAYS restless in the night.

If I was to be honest, I cannot remember the last time I asked the man I love, how his day was and I certainly haven't asked him if anything has inspired him or lit up his soul recently.  In fairness, he's a fellow of very few words so it's very easy for me to blame our lack of communication all on him.  I joke our kids have my desire to be social and A's skills....  Oh how VERY funny of me!

I would have to admit to being very quick to point out all of the things he does not do but I cannot remember when I last thanked him for cooking me a beautiful dinner (which he does often) or acknowledged that I know he does his best, works hard and obviously loves his family.

This is a man who I just noticed dragging a mattress down the hall so he could sleep on it instead of in our bed tonight because I complained this morning that I did not get much sleep due to his snoring (in fairness, it is a little like a freight train carrying a herd of mating cattle powering through the bedroom all night) but still, he's thought of me tonight and to allow me to get more sleep for my next round of butt kicking tomorrow, he has put himself out (without talking about it at length or analysing ourselves to death through an argument).  He just trotted down the hall with his mattress and pillow after giving me a kiss and wishing me a good night's sleep.

I mentioned that he cooks for me.  I should probably expand on this and explain that he cooked extra each night this week and set a meal aside in a take away container so I could deliver a home cooked meal to a dear friend who is staying with her seriously ill child at hospital indefinitely. see here  I mean, what a man.  I didn't ask him to do that, he just did it quietly, without fuss and told me the meals were in the freezer for when I next popped over to the hospital.

He hand mows a very very very big lawn so our kids are safe from snakes and other nasties that dwell in a rural yard and pretty much bends over backwards to provide whatever it is any of us are demanding of him on any given day.

Why am I so soppy tonight?  Oh, I don't know really.  I think the dragging of the mattress tugged at some forgotten heartstrings that are all too easily put to the back of your mind in a lifestyle well documented to be prone to divorce, stress and hardship.

I've connected with some really great women over the course of the past few months via a business course I'm doing and I realised that most of these women talk to their husbands and know what it is that their husbands like to do and one even set herself a seven day challenge to not complain or be negative at all about her partner.  See here, it's hilarious....

I'm not promising I'm setting myself such challenges here but I at least acknowledge that if there is a communication breakdown it's not just the quiet man's fault.....  Perhaps I should stop imagining fictional towns of doghouses to send him to if the poor exhausted, drained and seriously neglected guy goes to bed without taking the bloody garbage out and instead thank him for cooking me dinner pouring me a glass of wine and asking me how my day was.  Maybe I should even follow his lead occasionally and do the same for him.

It's so easy to use the Autism excuse for so many things.  I accept it can be all consuming and does place  stress on a family both emotionally and financially but geez, it seems I've forgotten I am married and that we were madly in love.  I think we still might be underneath the pile of stress we live under.  I'm not sure when it was that I woke up with a really kind and patient flatmate instead of a life partner who is clearly waiting for me to at least walk down the hall if not another aisle and acknowledge his enormous but quiet contribution to our family.

I think I'll head to bed and call the wreckers in to demolish the mythical dogtown in my head whilst I get my good night's sleep thanks to my very considerate husband.

J and H have a really wonderful father and over the next few weeks I am going in search of my long lost but really wonderful husband.  

For now though, I am heading to my quiet bed.

Night all.


**** Endnote:  A has never read my blog.  For those who do read it I'd like to tell him myself of my husband search so let's keep it our little secret for now and I'll surprise him tomorrow night with a meal, a glass of wine and an enquiry as to how his day was.  We have to start searching for our relationship somewhere and I think that's a good place.****

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/

Strike!

I have had the most surreal few days of my life.  I've been toying with that whole sending positive thoughts out to the universe thing that is so popular these days and whilst I would normally ridicule such malarkey, something really feels like it's shifting in my world...  Actually our (my family's) world.

Much to my surprise I received a nomination for the Barnados Australian Mother of the Year Award http://www.bamya.com.au/html/ and I am not going to talk about that right now as it simply renders me speechless to think about someone taking the time to nominate me.  I am blown away, honoured and totally shocked but also truly grateful to my friend Belinda Stanton (who is a new mum and incredibly busy herself) for doing such a lovely thing for me.  I'll probably talk about it at some stage on here but for now I'm just taking the time to enjoy the feeling of appreciation and gratitude and keeping all those wonderful warm fuzzy feelings just for me and my family.....  That was huge news but what I'm writing about now came up because of another positive universe gift landing in my lap unexpectedly.

Yesterday I literally stumbled upon a fabulous business opportunity for My Special Story Books For Special Kids (will divulge more as it pans out) and I am now sitting in the middle of a BIG MESS in the lounge room with kids running wild and fingers flying across the keyboard (also wildly) putting together a proposal I need to be ready NOW....... I've practised the old saying of picking my battles wisely today and am not sweating the small stuff (by small I mean small people) and have had a day of relaxing the usual rules and schedules we tend to follow to keep order and calm around here for the boys to feel secure.

No schedules, planned activities, outings, extending skills through play, using every moment as a teaching opportunity or anything remotely like our usual day today.  Today has been about the basics like food preparation and avoiding injury or death (basically).  Everything else has been focused on this proposal.  Now  don't normally put work first but this proposal has the potential to change our financial and therefore life circumstances so by putting work first today, I was inadvertently putting my boys first. Today I bowed to the altar of the Television God and asked it to babysit my wild boys so I could just get a few things finished by deadline.....   TV did a pretty crappy job of the babysitting in honesty but it did provide a few moments for me to knuckle down and the rest of the day I simply chose to ignore the mess being made in the kitchen as the small people delightedly unpacked the Tupperware cupboard and arranged it in their own unique fashion around the rest of the house.  I ignored toy buckets being tipped out and galloped through, I ignored the usual scuffles and bickering between brothers who always think the others grass is greener in toy land.  I ignored A WHOLE LOT.  

I am very pleased to say though, I did not ignore my son when he asked me a really important question.  I listened to him and encourage all parents to really listen to their kids even when stressed and even when on whatever deadline you might be on during your day.

It might NOT be the same question you've been hearing on repeat all day, week, month about a packet of chips, a biscuit or whatever food item they NEED in any given moment over a day of grazing. They might actually be really asking you a question you want to answer... J and H (my kids) have huge issues with sharing anything including a moment in their games as they are on the Autism Spectrum as you would know if you follow this blog. Today I was multi tasking in the usual busy mum fashion, on hold on a phone call, reading an email on my laptop which was propped upon the kitchen bench and throwing something resembling morning tea together for the boys feeling totally overwhelmed, exasperated and stressed out.

J came to the kitchen door and asked this question: "Mummy, would you like to have a turn playing bowling on the Wii with me?"

I hung up the phone, walked away from the computer and said, "I would LOVE to have a turn playing bowling on the Wii with you." I was then thrashed by the Wii bowling champion of the world whilst his little brother and my favourite cuddle bunny in the world, H,  cheered enthusiastically from the sidelines of our lounge room shouting, "Strike, YAY STRIKE" for both J and I regardless of whether we scored a virtual Wii strike or threw a gutter ball.  It was a really nice moment.

Listen to your children. If I didn't listen in that moment I would have missed it and it was a wonderful one of sharing J and H's special world. 

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

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.