A label is the sticky thing we refer to on products in the supermarket that tells us what's on the inside of a can, NOT what tells us what's on the inside of A CHILD.
I work very hard to dispel the myth that a child is labeled for life by receiving any of the above letters in a developmental assessment.
After chatting with several parents this week who have brought up their reticence to "label" their child even though they clearly show signs of fitting into one of the above diagnostic criteria I'm becoming increasingly frustrated with the language (and ignorance) of our society (again... See here to refer back to a previous very very long posting for the origins of my dislike for poorly thought out responses and language).
When J was diagnosed as on the Autism Spectrum, it's no secret that I found the diagnosis scary and even devastating at first, I have now learned that my children are much much more than a diagnosis or label as some see it. I was scared and devastated because of my own ignorance at the time and whilst it's quite common for parents to "grieve the loss" of their "normal" child (which is definitely a label of little substance and certainly not all that measurable by any standards), it's also pretty common for all of us in "label" land to pick ourselves up by the bootstraps and get on with the task of raising our differently abled (and perceived labeled) kids with pride and love.
If a child meets the diagnostic criteria for a diagnosis of any neurological condition it is actually useful and helpful (according to many many adults I have spoken with and are friends with on the Autism Spectrum) to go ahead and diagnose that child correctly so that they are supported within the school system (a diagnosis is the only way a child in Australia qualifies for extra learning support which they are guaranteed to require whether the reticent labellers are willing to accept or not) and in many cases the diagnosis explains to not only the rest of the child's network about some of the struggles they might face but also to the child himself (or herself) as they get older as to why they always felt different and in many cases misunderstood and in some very sad cases, miserable because of the lack of understanding and acceptance.
J was diagnosed on 08/08/08 and H much more recently (and I still quesiton that diagnosis as he presents so differently to J did but perhaps that's just the point of it being a spectrum). I'm aware that everyone is different and children do not fit into a distinct box (see the article I wrote for Sharisa Joy's Voices and Choices of Autism online magazine last year to see my own concerns in the notes of my facebook page) but when I play with my children I don't see them as Autistic first and a child second. I don't feel any differently about them than I did on 07/08/08 pre first diagnosis. I see them as J and H. Two very distinct individuals who share a bond of brotherhood and also a spot on a very diverse and varied spectrum of diagnosis. Hence now Autism being recognised a a spectrum of complex neurological issues and not a rigid list of symptoms and boxes to tick.
My children are very alike in some ways and very very different in others. Like any brothers. Yet they are the same in the eyes of the departments and service providers we now have access to because of the diagnosis who can help them receive intervention (now that's a label.... how about, treatment or assistance as an alternative?) which will help them lead full, productive and most importantly happy lives (I so sincerely hope, happy most of all) lives of real substance filled with fulfilling experiences and relationships. If I was slow to act and avoided the labeling process we would have missed out on so much progress for them and ultimately acceptance for them. If I didn't fight to have them diagnosed I'd still be struggling to understand my beautiful and oh so accepted children. It would be me living a sad and confused life, right along side of them and the way we all felt pre diagnosis was so stressful I never want to return to that world of label free but very very frustrated children (and parents).
For our family the diagnosis or label as some choose to incorrectly and ignorantly see it was the opening of a world of wonder, mystery, challenges (but overcoming all of them each day), love, acceptance and awareness. I remember sitting in a counselor's office only a week after J's diagnosis and sobbing over what I (incorrectly and also ignorantly) thought this "label" meant and I vividly remember this woman looking over her public (overworked and inexperienced) counselor clipboard and saying, "It sounds like you are saying that Autism isn't FUN Chantelle? Is that right? Autism is not FUN?" My reply was silence with mouth agape and furious wiping of flowing tears..... She plowed on in her own ignorance (I now see the funny side but it has taken time), "Well it's my job as your counselor to make Autism FUN!" Yep. I'm serious. She really said that.
After I'd picked my mouth up off the floor and gathered my things up I left her office without a word or answer of any description and never returned. I vowed I would go home to my beautiful children and simply accept them. I promised myself I would learn everything I could about how they tick and set about doing so and still constantly learn from them and many others with this label of Autism (among others).
To fear labels is understandable but fearing a correctly made and well supported diagnosis that will lead to understanding, help and acceptance is unfathomable to me now.
Here are the labels I would fear far more greatly than Autism:
Naughty
Bad
Stupid
Misunderstood
Sad
Bully
There are more but those should give a bit of food for thought. Perhaps those labels are the ones that are the ones we should all fear for our kids to receive particularly if the only reason they receive them is because of our own ignorance, misunderstanding and denial......
A diagnosis is not a label and a child is not a diagnosis.
A child is so so so much more than a diagnosis.
We are fast approaching International Autism Awareness Month (April) and I invite everyone to join me in raising awareness (including their own) and celebrating our children for who they are regardless of their "labels."
More another time. Just off to jump on the trampoline with J and H. Two wonderful, funny, loving, loved, understood, accepted, celebrated, brilliant little boys who happen to have a diagnosis of Autism.
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 successrelies 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.
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
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.
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.
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.
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/
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.
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.
I’ve been buried under several strings of Christmas lights of late and find it hard to sit down and write at the moment but I’ve got something on my mind today and thought I should really take advantage of the 30 mins I now have to either scratch my writing itch or do the housework...... Not really all that hard to decide for me. Writing it is.
Along the newly blogging way I’ve given a fair bit away about myself and my family life and shared that I write functional stories for children with special needs that highlight their strengths as well as their everyday needs so that their own support network is also supported with the knowledge about how to relate to these beautiful kids.
Whilst I’ve given lots away about myself I’m not sure if I’ve really laid every card out on the table. I’ve said I’m passionate about my work and that I feel privileged to be able to share the joy of the kids I write for. I have not been all that forthcoming with the sadness I also feel or the nagging guilt about why I find myself on this path in the first place.
It’s only a matter of time before this nagging comes to the proverbial head though and if I have not worked through it at least partially I fear that it will not be all that pretty for me when it does. I’ve been doing a business development course with some brilliant women over the last few weeks with the aim of really expanding my special needs resource business further and time after time I’ve tripped up on my answers to why I charge so little for my books and other items. Time after time I explain that I need to keep the prices low for the families because I am in the same position that they are and understand how hard it is to decide where you need to put your limited amount of money when sifting through all the therapy and aid options out there for kids with limited life options. Of course this is true and I still believe this but I also find myself confronted with the overwhelming reality that the other reason I don’t charge high prices (or even prices that would return minimum profit) is because I don’t think I am worth it. It has nothing to do with what I think the product/service I am making is worth. I believe the education and awareness raising benefits for our children’s support communities is indeed worth much much more than what I am charging but the crux of the matter is that I don’t think that I am worth it.
Not only is this confronting for me it’s shocking. During life B.A. (Before Autism) which is almost a previous life in my consciousness now, I was one confident lady. I knew I was a dynamo and presented myself as such. Inside and out I carried myself with my best foot forward and I charged my clients what they should pay to receive my outstanding work. There was no issue about what I thought I was worth, I was honestly quoting on what people needed to pay for me to work for them. I was a published writer and an accomplished public relations consultant that was admired by my peers and respected by my clients.
That was B.A.
Autism gave me an enormous kick in the guts. The wind was knocked out of my over inflated sails. Gutted and deflated instantly. I no longer felt the slightest bit like a dynamo, super mum, wonder woman, June Cleaver, Carol Brady, Pippa from Home and away or even Rosanne Connor on a bad day.
I’m going to put it out there. I’m going to utter the underlying pain, doubt and pondering of any and more than likely every parent of a child with any type of special need, developmental delay, physical disability.......... Was it my fault? Was it something I did? Was it something I did not do? Is it my fault?
Please don’t get this confused with me not loving my boys exactly as they are. I would have 10 more just like them if I was young enough, energetic enough, wealthy enough (this Autism thing is expensive), fertile enough and young enough (yes I know I already said that but let’s face it, I’m getting a bit long in the tooth to consider 8 more kids of any variety).
I celebrate my children for their strengths, their infectious joy, their incredible bravery and for the unstoppable gusto with which they take on the confusing world around their very pretty heads (oh I know I’m being biased and indulgent now but believe me, they really are pretty pretty boys. So beautiful to look at that some days it actually catches my breath and right now I’m glancing at my ever present photos of them and there’s a lump in my throat. They really are that beautiful. Well at least to me and the many other besotted admirers they have collected along the way).
So anyway, yes I celebrate them, accept them, am inspired by them and I truly believe they have made me a better mother than I thought I could possibly be but...... Their lives are hard. They have incredibly difficult existences. Everyone knows I go overboard to make their lives as easy as they can be in any kind of environment I can control but the fact remains they are a minority in a really frighteningly unsympathetic and overwhelmingly unaware majority.
There are no physical characteristics that set my kids apart to alert strangers that they have a neurological difference. This is where my ever present bellowing loud voice constantly banging on about Autism awareness was born from. The need to explain to society that difference does not always in fact look different. It’s my plea for the creation of a Utopian society where my boys and the many other kids like them will be ok when I’m not around 24/7 being their own personal, exhausted cheer leader (well I’m taking on enough at the moment to be considered the whole cheer squad really in reality).
I’ve found myself on the train to my business course these last few weeks avoiding eye contact with the weird bloke getting on by himself and looking for a seat. I have found myself judging the students around me based on appearance and who looks like I would be compatible with to chat with over lunch and in the group tasks. I’ve found myself feeling annoyed by the teenager at the station singing along with his mp3 player oblivious that it’s not really socially appropriate to sing loudly and out of tune in fellow commuters ears.........
All of this is also confronting for me. These weirdos, socially inept or badly presented people could be anyone with any issue. These people could be my sons when they grow out of the cute phase where you can get away with some behavioural stuff and social gaffs because you are so darned cute to the adults that steer the course of your strictly routined and completely structured life. More confronting is that there will definitely be people who will judge them too quickly and without all of the information if their own mother is guilty of doing it too.
No matter what I do now. They will have difficult lives with this fact being inescapable. This makes me sad. That is also an inescapable fact. In turn this makes me feel wracked and almost crippled with guilt.
I can already hear you frantically typing your responses that it’s not my fault, it’s nothing I did or did not do and that guilt is a wasted emotion. I repeat these same platitudes to myself (and others) every day. Does not help and if you take a minute to put yourself in my shoes or if you are a mum in the same well worn shoes as I wear in our world of govt depts, therapies, lists (oh those bloody lists), early intervention, disability payments, paperwork (oh that bloody paperwork).... If you take a minute to consider if you can possibly put yourself in my place no matter how confronting that may be or how heartbreaking it is to contemplate even for a moment in time that YOUR child has a hard life, a confusing life, a life with perhaps pain (mental, neurological, social or physical) associated.... If you live truly in that minute in those shoes..... Go on try it...... Could you so easily dismiss your protective mother lioness feelings? Could you so easily brush off your potential role or blame (no matter how miniscule the actual likelihood it was you to blame) in the hardship you so desperately do not want to see your child ever face?
Don’t we all just want our kids to be happy? Isn’t that what we say when they are born? I just want my kids to be happy.
I tell myself my kids are happy and they certainly appear to be as such when you peek into their world of giggles and Thomas characters and hide and seek with one another. They really do seem happy. I was convinced that even though I have sad days (let me know if you are reading this with more years under your belt than me if those sad days ever go away completely because boy oh boy, are they a killer). I don’t have too many of them anymore. I think this is because I thought my kids really were happy, that I still feel possibly to blame that their life would potentially be hard but it is getting better because look, I can see we are beating the odds, I’ve managed to come up with the perfect Autism formula to say “F*ck you” to the stereotype of an unhappy and anxious child lost at sea in a confusing society. If I can get this formula right I will start to think I am worth it again. If I can just beat the odds a teensy weensy bit more I promise I will be worth it again in my own mind...... I read “The Little Engine that Could” quite a lot to my boys and I think it’s as much to prove to me as to them that the power of self belief can help you achieve absolutely anything if you only think you can...
Thought I could. Thought I had the winning formula....
Today J was crying in the car after we dropped a Christmas gift off to someone. I was frustrated he was crying and tried to rush him back into the car because it was raining and I was getting wet and cold, I tried to skip all the necessary rituals he needs to make himself feel safe and secure in this confusing crappy world of changed routine and bloody Santa coming (how do you explain Santa is fine to be friends with and it’s ok to sit on his lap but strangers are unsafe to a child who needs rules to live comfortably... How do you keep changing the rules and help him understand them)? I rushed him and wouldn’t let him do his necessary three revolutions of the car, his leap into the front seat to touch the same 3 radio buttons every time he enters the car and his leap back into his own seat then ready to “put your bloody seatbelt on.” Nope. I rushed him and made him skip all his rituals.
He cried. I yelled. “Why are you crying?”
J answered, “Because I’m worried.”
I probed for more information but in honesty not out of a need for understanding on this occasion, it was more a need to exclaim my own frustration in a highly tense moment. I exclaimed, “What on earth is making you worried?”
His answer which will forever be remembered always as one of those heart ripping moments and will add to my metaphorical bucket of guilt...... “You.”
Again..... here it is again...... “What on earth is making you worried?”
“You.”
For a child who is considered to have a communication deficit he made it crystal clear that I could wax lyrical all I wanted to about how evolved I am and how I can be worth it again soon in my own mind and let go of any guilt or pain if I just I continue to develop this amazing understanding of his needs but unless I am willing to also pull myself up on the bad days..... The days where I get it completely wrong..... I’m just as confusing and unaware as the rest of society to him.
I have to learn to accept that we have a long long way to go before I truly understand him and be ok with that. I have to be ok with the continuous learning process we will be a part of forever and unless I accept it’s not just the rest of society that must adapt and J that has to adapt, I have to adapt as well..... Well unless I accept any of the above there is no way the guilt will ever subside. I am going to accept I am guilty of being ignorant too. Unless I acknowledge that, I cannot even start to work on it, let alone start to change it.
I would like to finish by saying I will never avoid eye contact with the stranger on the train muttering along to himself or that I will never again base my opinion upon someone’s appearance. That’s not realistic though. Everyone has slip ups, even me so I’ve learned. I will say however that I will be working on these things and making an effort to recognise these traits in myself so I can be better able to find that magic Autism formula for my son’s happiness.
PS: To the customers of My Special Story Books.... Don’t worry, I’m not going to hike up the prices in an effort to find my own self worth just yet. As a warning though, I really will have do a business plan and look at things like costing, profits, loss and all that administrative jazz one of these days...... Until then, I simply enjoy my work and will continue to raise awareness (including my own) for our amazing kids.
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.
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.
