Rainy Days and Mondays always get me down.... Except it's Friday so maybe this should just be called Blue Day Blogging.....

warning... It's a longy......

Hi all,

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.

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.

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.