Thursday, December 10, 2009

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: and rsvp to the event on facebook at:

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:



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.

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