Autism and Aspergers Support Group Inc

We heard Chantelle's story of her two beautiful children... Chantelle is also the Vice President of the Richmond Executive Commitee of the Autism and Aspergers Support Group Inc.

Who are they?

Operating since 1998, this support group is run by volunteer parents. On their website they state:

"Our ideals were - and still are - for parents, carers, and individuals to come together to help and support each other by sharing stories and to give or seek advice. We welcome all new members - families and/or individuals - who wish to come to our Support Group meetings, our organised events and activities and our social groups."

What do they do?

• They meet monthly in Richmond and Burwood, NSW. At the meetings they have guest speakers, or "a general chat where we can bounce ideas off each other and realise we are not alone." They have hosted Professor Tony Attwood, who has done much research into Aspergers Syndrome and related therapies. Wendy Lawson is also a patron of the group.
• They provide information about other support services in the area, including social groups for teens, playgroups and so on. See their web page for more information on this.
  
• A well stocked library for members
• A member newsletter with personal stories, "what's on", contact details of other groups etc.
  

How to become a Member

Membership is $20 per year. This gives you access to the library (including our soon to be added DVD of the March 2010 Professor Tony Attwood 2 day conference) and discounted entry fees when applicable to guest speakers. You will also recieve the monthly newsletter.

To find out more visit their website or facebook group.

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Chantelle's Story Part 2

Hunter and Jackson

I have a son with autism and he is 2 years old.

He loves Sam, Murray, Anthony, Geoff and Captain Feathersword almost as much as he loves his brother, his daddy and me. I suspect he would also LOVE to ask Dora to be his girlfriend.

He is really good at puzzles, waiting for his turn, making Mummy laugh and giving soft little kisses.

He struggles with sensory issues like loud noises, crowds and playing with other kids.

Sometimes I, as a parent, find it hard when I feel torn in two. I also have an older son with Autism and both boys cope differently with social situations and change of routine. Hunter is so much more quiet in his approach to everything and much of our family’s time is focused on my older son who is more rambunctious and likely to meltdown.

I know in my heart of hearts that Hunter is struggling in many situations too but because he struggles silently he is often second on the list. He is second born, second to be helped into the car, second to have a turn and second to be cuddled when he’s having an anxious moment if his brother is noisily having one too. He is not second in my heart though. My heart is big enough for the boys to share equal space and love and it’s apt that that’s where my love for them lives as my heart often breaks in two for the enormous journey they face throughout life.

But then I think about the special moments, like when we recently went to a concert friends of mine in a country music band called The Rough Diamonds were doing to raise money for Autism Awareness.

Hunter had been in meltdown mode and very avoidant of all the noise and overwhelmed at the crowd but then our friends broke into a song that he instantly responded to. It was like he understood the words being sung and he calmed down straight away, smiled his big gappy toothed grin at me and climbed on my knee where danced holding my hands and giggled whilst I sung along (badly). The song is called “Free To Be."

As I listened to the lyrics, “I just wanna be free to be me & smile. Just leave my worries far behind & I’m gonna hold my head up high, feels good to be me. I’m gonna be free to be me & smile. Be true to who I am inside. Kick up my heels & enjoy the ride. Just want to be free, it’s time to be free, yeah free to be me. Feels good to be me.” I couldn‟t help but smile & feel emotional about the perfect fit this song is for my Hunter.

When I think about that moment looking up at his smiley face, into his enormous chocolate brown eyes whilst he danced on my knee to that song, I feel like he just might have enough innate wisdom and understanding of his own journey that he will be ok.

More about Chantelle and her family's journey with Autism can be found here: http://myspecialstorybooks.blogspot.com/

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Chantelle's story

Jackson: A Memorable Moment at the Easter Hat Parade

I have a son with autism and he is 4 years old.

He loves Tom & Jerry, Scooby Doo, climbing trees, all of his friends at preschool and me.

He is really good at kicking goals into his soccer net, helping me stir the cake mixture when we cook together and giving big squishy cuddles.

He struggles with noisy environments, transitions, trying new things for the first time and remembering to always stay near Mummy when we go out which is terrifying as a parent as I honestly feel like I cannot keep him safe.

Sometimes I, as a parent, find it hard when I think about what the future holds for Jackson. At the moment we are choosing a school for him to start at next year and it feels like there is no place he will fit with regards to the education system. Then of course I dare to think about what happens after school and wonder what sort of job he will have, if he will have a girlfriend, will he be invited to parties and most of all, will he be happy?

When every single thing that is new or out of a routine causes anxiety for your child, it really makes you wonder if they can be happy. I lay awake at night thinking about that most. I can take the meltdowns the fighting for every scrap of funding thrown our way, the numerous appointments, the stares of ignorant strangers if an outing goes pear shaped and I can even take the enormous financial burden on the family. It’s the happiness factor that keeps me awake.

But then I think about the special moments, like when Jackson participated happily in his Easter Parade last week, surrounded by friends and loudly exclaiming his love for me during the stroll down the preschool catwalk….. Well when I think about that moment I am filled with a love and a joy indescribable even for me, who as a writer, should be able to describe anything in words. This moment was too big for adequate words. I tried hard to put it into words though over at my own blog and I invite you to take a look at many joyful moments we’ve had together over there: http://myspecialstorybooks.blogspot.com/

Please find an extract of the Easter parade post right here:

So there we were, sitting front row and centre waiting for the Easter parade to start and I will admit to having my usual knots of nerves as I so hoped it would turn out well and not just for me and any need I have to see Jackson do the "right" thing, more for Jackson so he could enjoy the parade like the other kids and for once feel comfortable and happy even though it was a change in his routine.

Jackson's turn came finally, my video camera was poised and ready to go just in case it was a hit and not a miss..... Will he do it? Won't he do it? No one around me would have seen the inner encouragement I was trying to physically send out to will my little guy on and help his anxiety stay at bay so he could just walk down the path holding Annabelle's hand and walk back again. I'm talking about possibly a maximum of twenty steps. Just twenty little steps so many parents would have no understanding of the difficulty those steps would consist of for my Jackson. Twenty steps of sheer terror for many children with Autism and although twenty steps sounds like such a small task, our world is one of only EVER taking ONE step at a time. It's like the Autism Mum mantra I think.... We probably all have the same mantra in our heads for any occasion, any day, any task, any achievement.. anything. One proverbial and symbolic step at a time...

Yet here I was hoping for twenty actual steps. With the expectation of him overcoming the possible sensory issue of the bunny ears. With the expectation he was to hold Anabelle’s hand and guide her along for the twenty steps too and with the expectation he would be fine with all the clapping which is another sensory concern for him from the parents and teachers as they encouraged each child through their twenty steps.

Time to take the first step.......

Huge smile, Anabelle's hand delightedly in his own and off they went. I'm teary recollecting it now. "Hello Mummy!" he called as he competently passed me by on his twenty steps of pure unadulterated bliss for all to see and experience with him. Step ten or so was time to turn around and he paused. A look sideways to the grass beside the path of the parade...... He bent down and found the only yellow daisy in a big patch of green, plucked it from the ground turned around to take the return journey to the class and proceeded to rush over to me again with pretty, sweet, patient and kind little Annabelle still in tow (sporting the most open and giving smile of her own too). Jackson handed his freshly picked yellow daisy to me and I'm being generous by not calling it by it's rightful name of a weed.... but it was simply the most exquisite weed I have ever seen. He looked at me squarely in the eyes, shared a moment just for us in a crowd of many others and said in his ridiculously loud voice, "I LOVE YOU SOOO MUCH MUMMY." I responded through my predictable and joyful tears that sprang up from my always aching heart..... "I love you too Jackson, thank you baby boy."

I am brought to you today by overwhelming joy, happiness, pride and love. Oh did I mention love? My heart is busting with overflowing LOVE! A happier Easter I could not wish for after today's Hat Parade ...

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Autism Spectrum Australia

I want to take some time this month to build awareness about the organisations and groups who provide support for families of children with Autism.

Autism Spectrum Australia: ASPECT

ASPECT state on their website that they are Australia's "largest not-for-profit autism specific service provider." They provide many services for families of children with Autism.

Information
You can start learning about Autism by visiting ASPECT's information pages. However, it doesn't stop there.

They also have an information line which you can call to get information and advice. They can advise you on anything from diagnosis to finding services for your child.

If you live in NSW, Australia, ASPECT can also help you understand and navigate through the process of applying for early intervention funding.

Diagnosis
If you are concerned about your child's behaviour or development, but don't yet have a diagnosis, you can complete an online questionnaire on ASPECT's website to give you an idea of whether you should be looking for a diagnosis of an Autism Spectrum Disorder. ASPECT also provides a team who can make a diagnosis.

Early Intervention
Once a child is diagnosed it is important to start building their skills as soon as possible. One of the services that ASPECT provides is an Early Intervention Service called Aspect Building Blocks.

Workshops and Family Support
Aspect also run workshops for families and professionals. They also coordinate a parent support network.

Specialist Schools
Aspect also run a number of specialist schools and classrooms. For example, in the Hunter Region (Newcastle, NSW) there is one specialist school and five satellite classrooms located in other private or public schools.

And there's more!
Aspect provide many more services for children, youth and adults. So make sure you explore their website further. They may have something that either you or someone you know might benefit from.


How you can help:

Aspect is a not-for-profit organisation. Like any such organisation, they are always in need of money to keep their services affordable for families. Please consider making a donation to help them expand and continue their invaluable service.


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Contact me if you have a service, support group or fundraising effort that you would like me to write about this month.

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Autism, Meltdowns and Sensory Sensitivities

In Jennifer's story about her son Korbin she mentioned the struggle she had in dealing with the looks, comments and lack of understanding about her son's behaviour, particularly when he has a "meltdown."

What is a meltdown?

A meltdown can look like a tantrum. When a child with Autism is having a meltdown they may:

• scream or yell
  
• cry
• fall to the ground and roll/kick
  
• rock back and forth
• hit and kick
• flap their hands
• freeze/become immobile
  

It may go on for a long time, and it will probably continue until the child adjusts to what is causing them distress, or until they are removed from the environment or thing that is causing them distress.

What can cause a meltdown?

A meltdown can be caused by a range of things that a child with Autism may struggle to cope with. However, one of the key issues that can lead to a meltdown is sensory sensitivities.

As Autism Spectrum Australia (ASPECT) state, children with Autism can be over or undersensitive to the tastes, sights, touch and sounds that are part of our everyday life. The increase in unfamiliar sounds and sights in a public place can become overwhelming, and the experience so painful for the child, that they can only get relief in the same way any other child would if they were in pain - by screaming, crying, rocking or any other behaviour that helps to comfort them. And this will not stop until the source of the pain is removed.

To further help you understand this, and possible ways to manage sensory sensitivities, please read this great article by RelateToAutism. They have a great picture that helps to explain the sensory challenges a child with Autism may face.

Also, for a fuller explanation, read the information sheet by ASPECT.

Just a note: Not every child with Autism will experience the same difficulties. Every child is an individual.

Is the child just being naughty?

Would you call a child "naughty" if they were screaming in pain? Would you think of a child as "misbehaving" if they were pushing, flapping, kicking due to fear and anxiety?

Try and put yourself in their shoes... here's a video clip that may help you do this.



So remember...

Next time you see a mum or dad struggling with a child who is screaming, flapping, crying... ask yourself, how would you feel?

Don't judge and stare, ask "What if it were me there?"

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Jennifer's story

Korbin

I have a son with autism and he is 4 and 1/2 years old.

He loves building with lego blocks, Bakugan Balls, Transformers & All super heros.

He is really good at any building things, such as robots and spaceships with lego.

He struggles with speech & general day to day skills that we take for granted.

Sometimes I, as a parent, find it hard when we are out in a public place and he is having a meltdown and the looks we get from passers by, or people's comments and saying he is just being a naughty boy. Or family & friends not understanding the full extent of autism.

But then I think about the special moments, like when he is laying beside me and I am pretending to be asleep and he will rub my arm with so much affection, or out of the blue he will say "I love you"

Jennifer

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Amanda Asks: Autism Awareness

Instead of the usual Ask Amanda post, this month I am starting with an Amanda Asks column. And it is all due to the fact that April is Autism Awareness Month.

Autism Awareness Month

It all began with the Autism Society of America declaring that April would be Autism Awareness month. They have been pushing for Autism Awareness through April Awarenes month since the 1970s.

But this year is the first year that I have joined in the celebrations. This is primarily because up until this year I have been unaware that April is a good time to talk about Autism.

Amanda asks parents

I want to help build awareness by providing the opportunity for parents to tell their story - to celebrate their children who have Autism, and to talk about the challenges. I want to do this by asking parents to complete the following sentences, then emailing it to me at amandag at learn2bebuddies.com.au:

I have a son/daughter (delete the irrelevant option) with autism and he/she is .... years old.

He/she loves......

He/she is really good at ....

He/she struggles with ....

Sometimes I, as a parent, find it hard when .....

But then I think about the special moments, like when ... (tell us about something great that has happened - an achievement, a hug, a word, a moment that has encouraged you).

Please note: By sending your completed story to Amanda Gray you are giving permission for it to be posted at http://www.learn2bebuddies.blogspot.com during April, 2010. Names won't be used unless the you give permission, and then only first names will be used.

If you want to share a photo, you could either use a picture of your child showing their face, or one where you can't see their face... perhaps take a picture from behind as they play their favourite game. Please note that by providing a photo you are giving permission for it to be publicly displayed on the abovenamed blog. Please do not include a photo if you do not agree to this.

Feel free to contact me if you have any questions.

Amanda Asks Support Groups:

I also want to share information about what different support groups are doing to help spread Autism Awareness. If you want me to mention your event or activity, please contact me.

It all starts with "Light it Up Blue"

On April 2nd around the world significant buildings are going to be lit up in blue to highlight Autism Awareness Day. In Australia, Melbourne's Federation Square will turn blue.

If you want to find out more about "Light it Up Blue", visit www.lightitupblue.org. You can make your own contribution to the effort by doing one or more of the following:

• Change your Facebook profile picture to the Light It Up Blue logo and tag at least 10 of your friends.
• Post on your blog about how you are “lighting it up blue” to raise autism awareness.
• Add the Light It Up Blue logo to your e-mail signature … and type your e-mails in blue!
• On April 2 wear blue clothing and ask your co-workers, schools and friends to wear blue too. Take pictures and add them to our Flickr gallery.
• Bake puzzle piece shaped cookies and frost them with blue icing, then bring them to your school, work or place of worship to raise autism awareness.

And, remember, if you do these things be ready to answer questions. Make sure that if you do not have first hand knowledge of Autism, that you do some reading on the topic. This is a good place to start: www.autismspectrum.org.au


And come back here to hear Jennifer's story tomorrow....

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