For posts on bullying, visit The Learn to be Buddies Series Blog.
All images and posts written by and copyright to Amanda Clements (nee Gray) 2009-2012 unless otherwise indicated.

Monday, April 12, 2010

Zoe's story

Harley and Brodie

I have two sons/with ASD Harley is 14 and Brodie is 11.

Harley loves playstation and Brodie loves swimming at nans, swinging and the computer..

Harley is really good at playstation, online computer strategy games and technology. Brodie is really good at giving kisses to his mum, swimming and going away on holidays

Harley struggles with organization skills, getting off the playstation, doing his chores and the unknown. Brodie struggles with speech/communication, frustration, challenging behaviours and eating non food items.

Sometimes I, as a parent, find it hard when an outing goes pear shaped, when I have to find things to do that suit both my childrens needs, when people comment and stare.

But then I think about the special moments, like when Brodie said mum and nan (his first and only words) and when Harley's got a fantastic first high school report after his last primary school telling me he would never cope with high school. But especially when my mum and I flew with both boys to Detroit, LA and Hawaii and we coped and the boys coped and we had the holiday of a lifetime! x


Tell your story
and help build Autism Awareness

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Sunday, April 11, 2010

Can You Help? Running the Marathon of Autism Campaign

Felicity

Running the Marathon of Autism
By Amy Costin

With April being World Autism Awareness Month it is the perfect time to launch our Running the Marathon of Autism campaign in aid of my little girl, Felicity's, Son-Rise Program (run by The Autism Treatment Center of America) that is day by day taking us closer to recovering her from her Autism!!

Felicity is a full of life 9 year old who has a beaming smile and one of the cheekiest giggles you'll ever hear. Felicity has Autism and cannot yet talk but has a few simple words such as "up" and "mum". Before starting her full time Son-Rise Program Felicity was unable to communicate to us that she was hungry, tired or that she needed to go to the toilet. She would sit by herself most of the time and stare 'into space'... but in just a short time after we began the Son-Rise Program, Felicity 100% toilet trained herself and now loves to be around people. Felicity understands everything that is said to her and willingly gives out hugs and smiles to those around her.


What is Running the Marathon of Autism about?

In 2006 a close family friend, Maryke, ran the Melbourne Marathon for the first time ever - Maryke, mother of 2, who claimed "it was tougher than giving birth," did the mammoth 42km run in the name of Felicity and was sponsored along the way to raise some of the necessary funds needed to keep Felicity's Son-Rise Program going.

This year, Maryke and 4 other amazing women Carley, Jocelyn, Sammy and Nicole, are all currently training in 'marathon proportions' for a variety of major events. These events include the 14 km Sydney City 2 Surf, the 21km Sydney 1/2 Marathon and the 42 km Melbourne Marathon. These inspirational runners who are taking on this challenge are not professional athletes, nor are they seasoned runners. They are women who are mums, work full time jobs and have children of their own but they all have one common passion - Felicity and the amazing milestones she has accomplished since starting her Son-Rise Program 4 years ago.


What is it raising money for?

The Son-Rise Program is sadly not available in Australia. It is run by The Autism Treatment Center of America in Massachusetts and involves at least 4 week long training courses which we, as Felicity's parents and her Son-Rise Program 'directors', need to attend to maximise the potential of Felicity's full time program that has so far seen Felicity prove doctors and other medical 'professionals' wrong. These courses obviously cost money which we rely heavily on fundraising for.


Why is this important?

Felicity has come so far since starting her Son-Rise Program and is the happiest we have ever seen her. We believe that the Son-Rise Program is the right thing for her and even if the amazing milestones she has reached so far are the only ones she ever manages to accomplish her happiness is the most important thing to us and in The Son-Rise Program she has found that.


To find out more about Felicity, the amazing women running for her and The Son-Rise Program as well as ways you can support this campaign by donating please check out our website at: www.intellectualdisability.org
You can also join us at Facebook: www.facebook.com/Marathon4Autism
and Twitter: www.twitter.com/Marathon4Autism

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Saturday, April 10, 2010

Lisa's story


Zoe and Anzac


I have a 4 children 5 yrs and under. My daughter, Zoe (5) and son, Anzac (3) have been diagnosed with autism spectrum disorders - PDD-NOS and Autism. My 3rd child, Zannalee is in the process of diagnosis.

Zoe loves craft & drawing (the same thing 100 times) and Anzac loves riding his scooter & bouncing on the trampoline.

Anzac is really good at number recognition, and Zoe is really good at drama, and playing out roles she has seen in a movie.

They both struggle with social interaction, when a word has 2 different meanings, receptive and expressive speech, and many other things, but lets try and keep this positive! - i won't list them all!!

Sometimes I, as a parent, find it hard when I am out in public and people just presume that they are being 'naughty little brats'.

But then I think about the special moments, like when they use their impeccable manners , Zoe made a FRIEND this year, and her friends mother has invited us to some over for play dates!!!


Tell your story
and help build Autism Awareness

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Friday, April 9, 2010

Bride's story

Chayton

I have a son named Chayton with asd, global developmental delays and food phobias and intolerances and he is 4 1/2 years old.

He loves Thomas the tank engine and anything that has a motor and wheels. He is brilliant with numbers and just loves to play car racing games on the computer or playstation.

He is really good at numbers - anything to do with them really!! He is adding and subtracting and can count to 100.

He struggles with social skills and gross motor skills. He also has not yet been toilet trained although we have been trying since he was 2. But we just keep trying in hope that he will understand it one day.

Sometimes I, as a parent, find it hard when people see him melting down and they stare and tell me to control my child!! It infuriates me because my other 3 kids are there and they are not behaving in that way, so it isn't my control - it is his control which he has no control over!!

I do struggle daily with Chayton with food as he has a lot of food intolerances but also suffers food phobias as well and currently he survives on chicken nuggets and chips, pizza, choc chip cookies and peanut butter toast. I just would like family friends and other people in society to have more tolerance and understanding for them as kids, but also for the parents as it takes a lot to raise our children - but we love them even more in a lot of ways as they are very special
.

But then I think about the special moments, like when Chayton first started talking at 3 and then when he first said I LOVE YOU MOMMY - that really made everything worth while! And just for him to run up to me and give me a big hug and say, "Are you happy at me mommy, cos i love you!"! It really just tugs at the heart strings and makes everything a lot brighter.

When Chayton started Prep this year was a big milestone for us and he is settling well and loves his teachers and the smile on his face when you pick him up in the afternoon is priceless!!


Tell your story
and help build Autism Awareness

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Thursday, April 8, 2010

Autism and Imagination

Imagination is an important part of life. When reading about Autism Spectrum Disorders you might read about it as "cognitive flexibility" (ASPECT, 2002)

It is an important part of playing, learning and interacting with others. Imagination helps us understand abstract concepts, problem-solve and empathise with others.

Autism and Imagination

The National Autistic Society state:

"Social imagination allows us to understand and predict other people's behaviour, make sense of abstract ideas, and to imagine situations outside our immediate daily routine."
It is this form of imagination that children diagnosed with Autism Spectrum Disorders (ASD) find most difficult. The following are some of the key skills associated with social imagination.


Theory of mind

The technical definition of theory of mind goes something like this:

“Theory-of-Mind (ToM) is the social cognitive ability to attribute mental states to oneself and others and to use these attributions in understanding, predicting and explaining behavior of others and oneself.” (Blijd-Hoogewys, Geert, Serra & Minderaa, 2008)

In simple language, it is about the ability to empathise and evaluate how our behaviour is effecting others. As Blijd-Hoogewys et al suggest, it is a core skill in being able to interact in a socially acceptable way. Without it, children mostly act egocentrically. This means that they interact with others according to their needs and wants without identifying how their actions may effect others.

For children who are "neurotypical" (ie. don't have an ASD), the ability to empathise and evaluate how their behaviour will effect others starts to be evident in their interactions around the age of four. This is also the time when they start to develop friendship groups.

A child with ASD will be able to learn this skill, but will it not develop at the same rate or in the same way (Blijd-Hoogewys et al., 2008; Gartrell & Gartrell, 2008; Miller, 2006). This means that while they want friends, their difficulty in imagining how others are feeling, or imagining how their behaviour might effect others, means that they often do not develop friendships in the same way. Instead, they may become a little isolated as they struggle to behave in ways that are considered appropriate.


Interests

Because of their difficulty with social imagination, children with ASDs often have a narrow set of interests (ASPECT, 2010). They may find it difficult to communicate or learn about things outside this interest. They may also struggle to play games that don't fit with their interests.


Imaginative play

Many social skills are learnt through participation in imaginative play. For example, whilst playing "mummies and daddies" children are learning to communicate effectively, share and practice the different roles and activities relevant to everyday life. Children with ASDs may struggle with unstructured imaginative play because there are no set, repetitive rules for that type of play (The National Autisitic Society, 2010). It requires a lot of social imagination.

So the one type of play that could help children learn social imagination skills is often the type of play that children with ASD don't voluntarily get involved with.


Change and new experiences

Imagine this:
You have just woken up. You look around an there is nothing familiar in your environment. You aren't at home. You don't know the people you see. They are speaking a language you don't understand. They are acting in ways that don't fit with what you have come to expect from people. The weather is different to anything you have experienced before. There are noises you don't recognise. You don't know where you are.
How would you feel? Disoriented? Home-sick? Teary? Scared? Frustrated? Angry?

You feel these things because you can't predict what might happen next. You can't use any of the information you have gathered from your other life experiences to help you because everything is so foreign. You feel like things are spinning out of control. You end up with what we might call "culture shock", or an emotional and sensory overload - which can lead to anything from depression to significant anxiety.

And this is what it must be like for a child with Autism.

If you struggle to "imagine" and relate past experiences to new ones whenever a routine changes, or you go to a new place, you could experience a meltdown. Not because you are "being naughty," but because you are overwhelmed.


Danger

As the National Autistic Society (2010) mention, another skill that social imagination gives us is the ability to recognise the possible consequences for our actions. Not only in the context of how our behaviour effects others, but also how it might effect ourselves.

In short, we need social imagination in order to identify and manage risk.

As you will read in some of the parent stories that I will be sharing with you this month, one of the things that families often struggle with is getting their child with Autism to stay close. If a child does not realise that running away means getting lost, maybe getting hurt on a busy road or maybe being hurt by strangers - then they are less likely to stay close to mum or dad.

The child is not necessarily running away from mum. More likely they want something (like that favourite toy in the shop window), want to avoid something (like too much noise) or be struggling to wait while their parents get their jobs done.


This doesn't mean these skills can't be learnt

As a mummy blogger noted in her post about 10 common autism myths, just because a child has difficulty with a skill doesn't mean they can't learn it. It just takes more work. It is important that we focus on children's strengths and build on this.


Repetition and modelling


To help children with ASD get involved in imaginative play, we could use structure and repetition. For example, we can model a sequence of steps for the child to imitate to participate in pretend play. Like pretending to cook, or put a doll to bed, or drive a pretend car and so on.


Social stories

To help children predict what might happen as a consequence of certain behaviours, social stories can be used. I have discussed these in a previous post.


Just remember:
Don't judge, support and love
Use their skills and learn they will!


References

Aspect (2002). Thinking and Learning in Autism. www.aspect.org.au/publications/Thinking%20and%20Learning%20in%20Autism.pdf

Aspect (2010). What is Autism? www.autismspectrum.org.au/a2i1i1l237l113/what-is-autism.htm

Blijd-Hoogewys, E.M.A, Geert, van AEPLC, Serra, M., Minderaa, Æ R. B. (2008). Measuring Theory of Mind in Children: Psychometric Properties of the ToM Storybooks. Journal of Autism Developmental Disorders, 38, p1907–1930

Gartrell, D., and Gartrell, J.J. (2008). Guidance Matters: Understand Bullying. Young Children, 63(3), p54-57.

Miller, C.A. (2006). Developmental Relationships Between Language and Theory of Mind. American Journal of Speech – Language Pathology, 15(2), p142.

The National Autistic Society. (2010). Autism: What is it? www.nas.org.uk/autism

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Wednesday, April 7, 2010

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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Tuesday, April 6, 2010

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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Copyright Amanda Gray 2009-11


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