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.

Friday, April 30, 2010

Autism Rainbow Day interview part 2

In the previous post you heard Jackie talk about her experience as a parent of children with Autism... the rest of the interview focuses on highlighting a few support services that might be useful for parents. Scroll down to find the relevant links.

"It is not about bad parenting, it is about the child's struggle with the environment."




About Stephen Wiltshire, the artist ("autistic savant") mentioned in this interview.


Links to the support services mentioned by Jackie and I:


Balance support group

Strive support group

Hunter Connect

PlayConnect


...

I hope the blogging at Learning to be Buddies this month has helped to build awareness, and make a little difference in the lives of families living with autism. Thank you so much to all parents who shared their stories. The feedback and hits on these posts show just how valuable your stories are in helping to build awareness and helping us see your children as Children first.

....

Read more...

Autism Rainbow Day

Happy Autism Rainbow Day!
Today I spent the morning recording a radio interview with Jackie Hays, a mother of 3 children with Autism. You can hear some of what she says below...

Read more...

Thursday, April 29, 2010

Helping children with Autism reach their potential

This is a great video from ASPECT that gives some information about what autism is, and what things you might be able to do to help your child.

In the video you get to meet some families and their children who have autism. Professionals are also interviewed about what parents can do once their child is diagnosed. Their suggestions include:

  • Research: as no two children with autism are exactly the same, each will need different forms of support. Find out about what approaches are out there by using the internet, talking to other parents, or using telephone advisory services (see www.learn2bebuddies.com.au/pages/autism/doesmychildhaveautism.html for a list)
  • Have an individualised early intervention plan: Plan for ways you can help support their communication development, development of social play and behavioural abilities. Recognise that what you do at home is as important as specialist therapy.
  • Visuals: Find visual ways of communicating with your child. For example, use objects (such as car keys), photos, line drawings or written words (for older children) to help them make links between spoken words and what they mean.


Read more...

Wednesday, April 28, 2010

Getting a diagnosis Part 2

Since the last post I have been listening to what parents have had to say about their response to their child's diagnosis on my Learn to be Buddies Facebook Fan page. Here are some of their responses

  • Not surprised - parents often recognise that something is not quite right, especially if it is their second or third child.
  • Relieved - often the relief came as a result of recognising that their child's behaviour was not a result of "bad parenting."
  • Vindicated - parents' concerns can sometimes be dismissed by those from whom they seek advice and help. When their child is diagnosed it is a vindication of their concerns. It can re-affirm parents' trust in their knowledge of their children, and their parenting skills.
  • "I just got on with it" - just getting on with the role of advocate for their child is another response that parents can have to the diagnosis of their child.
If you have a child who is diagnosed with an Autism Spectrum Disorder... or any other condition... what was your response to the diagnosis?

If you think your child may have Autism, but don't know what to do next, visit www.learn2bebuddies.com.au/pages/autism/doesmychildhaveautism.html

Read more...

Tuesday, April 27, 2010

Dealing with a Diagnosis

When parents are urged to "get a diagnosis" for their child it is often the beginning of an emotional roller coaster. Every family responds in different ways, but there will be a time of adjustment...

LD Online identified the most common stages of adjustment.

  1. Shock
  2. Denial
  3. Anger
  4. Depression or helplessness
  5. Acceptance
  6. Hope and action
Mary gives us a little insight into these stages with her adjustment to the diagnosis of her third child. Chantelle tells us more in her blog post "To Cure or not to Cure?..."

The bottom line is that if you are a parent who is going through the process of diagnosis with your child, give yourself time to adjust. Recognise how you are feeling, work through the emotions ... and don't be afraid to ask for help.

If you are a teacher, family member or friend who thinks a parent should be more proactively pursuing diagnosis or therapy, remember that it is not that simple. Listen, affirm and avoid giving too much advice - this can just be overwhelming. We should be on stand-by: giving information and passing on contacts only when parents are ready for it.

We should never be judgemental. Parents need to find their own way to support their child, to choose their own road, at their own pace, based on advice that they feel they can trust.

Read more...

Monday, April 26, 2010

Tania's story

I have a son with autism. He is 4 years old.

He loves laughing, climbing and watching stuff fall. He loves Elmo, Wiggles and the Fairies. He loves his sister, his Mum, his Dad and his Pop. He loves traffic signs.

He is really good at recognising letters, shapes, directions, numbers and colours. He is pretty handy with computers.

He struggles to communicate and to relate to his peers. He struggles to understand how hard he is touching something. He struggles to stay quiet.

Sometimes I , as a parent, find it hard when he wants to be cuddled but he cannot stop his body hitting and kicking, especially when it is the middle of the night. I sometimes find it hard when people think he is being naughty when he is actually on his very best behaviour, especially when he has worked so hard to learn the new behaviour. Sometimes I find it hard to keep my patience with others who judge our family when they don't have all the facts and when people treat you like a remedial parent because I have a child with a disability. But most of all, I find it hard when he is stimming* and I cannot work out what he needs to feel calm.

But then I think about the special moments, like when he "tells" one of his jokes and giggles uncontrollably, or he almost interacts with another neurotypical child or when, with his limited vocabulary, says something that makes it clear to me that he understands more than we know.

My life is forever richer because of my little boy. He can light up the world with his smile. He brings joy to all that take the time get to know him. He will have a brilliant life.



* "Stimming" is short for self-stimulatory behaviour - read more here.



Tell your story
and help build Autism Awareness


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Sunday, April 25, 2010

Financial help for respite and holidays

If you are a family who really need a holiday, but are finding it hard to afford the cost of activities such as Camp Autism, then this may help...

Mary passed on that Commonwealth Carers Respite Centres (Australia) can provide up to $300 towards your holiday. To find out if you are eligible, call 1800 059 059.

Read more...

Need a break?

As we have seen from the parent stories being told here, going out of a child's comfort zone and into a public place brings up a range of difficulties for families living with autism. This has a significant impact on families being able to go on holidays.

As Mary says on her website, "We had stopped taking holidays with our kids as it become too much of a concern. We would be more stressed on holidays than at home. We worried our kids would keep others awake. We wondered if other kids would harm or bully them."

But she and her husband did not stop there. They decided to find out whether other families felt the same, and whether they could do something about it.

The answer to both questions was, "Yes!"... and Camp Autism was born.


Camp Autism

Camp Autism is all about giving families living with ASDs the opportunity to relax and unwind in a supportive and non-judgemental context. As stated on their website,

"The aim of Camp Autism Inc is to provide respite to these families ... We hope families will build support networks with other families for mutual support, information sharing, and fellowship."


Where?

Camp Autism camps happen around the country - in NSW, Queensland, South Australia and Victoria. They sell out quickly, so get in early!


When?

You can find a list of camps coming up here. The next available camp is happening on the 14th-16th of May in Geelong, Victoria. All the booking details are on the Camp Autism website.


What?

Want to know what happens at the camp? See some photos here: http://www.campautism.org/photo01.html


Want to know more?

Contact Camp Autism on info @ campautism.org

Read more...

Friday, April 23, 2010

Mary's story

I have three children with Autism.

Timothy is 13 and has Aspergers.

Timothy loves
Maths and computers. At the moment he is also enjoying photography and everything pokemon.

Timothy was diagnosed when he was 4yrs old. Timothy really struggles with social situations. He will not answer our door or our telephone without prompting. Even if he knows and loves the person on the phone he refuses to chat.

Timothy has really come out of his shell with the new friends he has made at Camp Autism. I think because most of these kids also have Autism and understand his need to sometimes to walk away or ask questions.

Amy is 5 and has classic Autism.

Amy loves everything Tinkerbell. Amy also loves animals.

Amy has only just started talking in the last 2 years. Amy also is lactose intolerant and has Epilepsy. We have not been successful in toilet training with her and it is an ongoing concern as Amy started Prep this year and whilst she has no been bullied yet I wonder how accepting kids will be as they get older.

Kailyn is 3 and has High Functioning Autism and was diagnosed a week before her 3rd birthday.

Kailyn is extremely bright and can write her name and other family members' and has been reciting the alphabet and numbers from age 2.

Kailyn does not understand other children her own age. She gets very frustrated when they act like typical children and not do puzzles, write names and colour between the lines.

Though with Kailyn we had started seeing the signs at a very early age we chose to put our heads in the sand. Three children on the spectrum brought me to tears often with worry of how we would cope, find services etc. Kailyn has also been diagnosed with Epilepsy and Encopresis. Kailyn is partially toilet trained but due to the encopresis and the need for medication to make her use her bowels it is a daily struggle.

I think the biggest struggle for me personally as a parent is trying to find services and activities for my children. Government funding ends when they are 6 and I often wonder and then what? Timothy is already homeschooled because the education system was failing him. I wonder what next. I wonder about where it will take our family and what the journey ahead will be like. We currently live in a small town in North Queensland and I feel we are being forced to move to a capital city to sit on waiting lists with thousands of other families. The need is so great in Australia that there is not enough services to go around.

The most special moments for me in the past few years have been at Camp Autism. It is so nice to chat with other parents who understand the journey we are on. Its nice to see brothers and sisters of kids on the spectrum hanging out and comparing poo stories or laughing at the silly things kids do. But it breaks my heart to hear of the tears the bullying and ridicule these kids suffer at the hands not only of school yard friends but often of their own family members. Hearing that a smack would cure their brother or sister is not what these kids need to hear.

At times like this journey of raising kids with Autism we should be able to find support in our own family. Sadly this is not always the case. For me Camp Autism has gifted not only myself but my husband and children with a new family. A family of adults and kids who know what the word acceptance means, are always there with a shoulder to cry on , and a joke to make us laugh again. People often thank me for the work I do for Camp Autism, what they don’t realise is how much the camps and the families who attend give back to me. At these camps I am free to be myself and my kids can spin, flap, jump, wriggle, giggle and meltdown without fear of being called horrible names.



Tell your story
and help build Autism Awareness

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Thursday, April 22, 2010

Money for Therapy

If you have a child under the age of six and you live in Australia, you may be eligible for up to $12000 to help you access early intervention services like speech and occupational therapy.

To be eligible for the early intervention funding package a child must have been seen by an Autism Advisor and deemed eligible to access the program before their sixth birthday. The $12,000 in funding under the early intervention component can be used until the child’s seventh birthday to a maximum of $6,000 per financial year.

The catch is that you must use approved Early Intervention Service Providers... some of which are listed here: http://fahcsia.gov.au/sa/disability/progserv/people/autism_panel/Pages/default.aspx This may not be an up-to-date, comprehensive list, so make sure you ask your Autism Advisor or local support group for more information (see the list at http://www.learn2bebuddies.com.au/pages/autism/doesmychildhaveautism.html)

To find out more about this and other funding, visit http://fahcsia.gov.au/sa/disability/progserv/people/HelpingChildrenWithAutism/Pages/default.aspx

Read more...

Wednesday, April 21, 2010

Jennifer's story (Part 2)


Jarrod


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

He loves
playing with his play station game, loves matchbox cars & swimming.

He is really good at
counting, play station games & numbers.

He struggles with
certain textures, Showing certain emotions & being in busy places.

Sometimes I, as a parent, find it hard when
he can’t understand why he can't do certain things, he has no fear which is very frightening at times. Having twins with ASD is also very hard at times.

But then I think about the special moments, like when
his memory is awesome, he remembers things back to when he was approx 2 yrs of age. His concern for his twin brother Korbin. He may not show a great deal of emotion, but he certainly looks after his siblings. Or when he compliments his older sister on how pretty she looks.



Tell your story
and help build Autism Awareness


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Tuesday, April 20, 2010

Sandy's Story

I have 3 sons with autistic traits/tendencies and they are 12 (HFA), 10 (AS/ADHD) & 8 (ADD) years old.

They love us dearly despite what they might say at times during meltdowns, they love computer games of any description including PS2 and wii and the younger two love running around outside with the neighbouring kids pretending to be soldiers, cops or whatever the flavour of the day is.

My boys are really good at avoiding all responsibility where possible, reading, sports (Master 10 & Master 8 especially), eating (except Master 10 who has serious food issues) and playing games on computers, PS2 or wii.

They all struggle with social interaction with others outside of the family and have trouble understanding social cues like personal space and when to talk/take turns at something.

Sometimes I, as a parent, find it hard when they are all being intense at the same time and my husband who has a much shorter fuse than I do goes off at them which only makes matters worse. I struggle to keep my own temper and my voice even at times and also get tired of feeling like I'm the only one who has to play the adult role and be in control of situations constantly. A self-confessed control freak, I get upset when my boys are having a power struggle and I lose my temper and yell at them. I also get frustrated with having to go through the same things over and over sometimes, and with feeling like my boys aren't learning very quickly if at all about behaviours.

But then I think about the special moments, like:
Master 12 had a sudden language explosion at age 3 when he gave us three sentences at once one morning where previously we had only had the occasional word like "Mum", "Dad" and "Car". He has literally not been quiet since and although that can be annoying at times, I would rather he dribbled verbally as a constant than return to a single word occasionally.
Master 10 declaring around age 5 that he liked "plain" pizza... could only get him to try it because I told him it only had tomato sauce on it, then the neighbour told him it had cheese on it, he stopped eating it but not for long. Could see the cogs turning in his mind as I told him he had been eating it for months and the pizza hadn't changed and was still yummy. He eventually overcame his foibles and tucked into a piece, now declaring that he loved "plain cheese" pizza. It has been a struggle to get him to eat all his life as he simply refuses to try new things and has restricted his diet heavily.
Master 8 comes up to me after a violent meltdown, wraps his arms around me and says "I'm sorry Mummy. I love you". All I want to do sometimes is push him away but I can't do that because he doesn't understand as he has little memory of his recent behaviour.
When all of them use the beautiful manners that we have hammered into them and I get complimented on their good behaviour and nice manners, all the while thinking "if you only knew" :)
Any of them proudly handing me a certificate from school or after school care with their name on it rewarded for good behaviour.
The phrases I live by these days include "you are never given in life any more than you can handle" and "only special parents are given the care of special children like ours, as they are the only ones qualified for the job". I am grateful for my own wacky sense of humour as I feel that is one reason I have survived and been able to get up on my board and surf the tide of autism as well as I have, not that I claim to be any kind of an expert. I am also grateful to my husband for being as supportive as he knows how, and for acknowledging both his and my ASD tendencies and making light of them, as it all helps make our unusual world go round.


Tell your story
and help build Autism Awareness


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Monday, April 19, 2010

Rainbowland Autism Services

Listening to parents share their stories about their children who have autism we can recognise two key things:

  1. Their children are loved and enrich the lives of their families
  2. Their children - and the attitudes of others around them - can present daily challenges that can be physically exhausting and emotionally draining.
Families and their children with Autism need support. Sometimes this comes free through informal support networks. But many important services are expensive and not always accessible.


Rainbowland Autism Services

Parents are advocates for their children. But who will advocate for families when they feel disempowered, exhausted or unsupported?

Rainbowland Autism Services states that they are:
“a modern, innovative and energetic organisation that demonstrates its passion for helping families living with autism through its dynamic services and commitment to global autism awareness. RAS strives to advocate for the human rights of families and promote community awareness and inclusion at every opportunity."

One Campaign

One Campaign that has been driven by Rainbowland Autism Services is the campaign for families of children with developmental disabilities to be eligible for disability parking permits. Listen to this video clip to find out why this is so important. Especially listen to Jacob and his family's experiences in the carpark (starting from about the 2 minute mark).





Autism Rainbow Day

But one of the biggest campaigns is the current campaign to build Autism Awareness globally. It is not about raising money, but raising awareness.

The key event of this campaign is on the 30th of April. This has been nominated as Autism Rainbow Day.

On this day businesses, schools, social groups are being asked to build autism awareness by wearing a plain coloured t-shirt. In their press release they state that the colours are to represent the colours of the rainbow - and the autism spectrum.

To support this awareness campaign, follow these simple steps:
  1. Join the Autism Rainbow Day Facebook Group
  2. Download your Rainbow Day Poster - print it and hang it everywhere.
  3. Tell your school and workplace about it - and hang more posters.
  4. On Friday 30th wear a plain coloured t-shirt (and keep a few in your car to share with those who have forgotten :) )
  5. When people ask why you are wearing bright colours, tell them about Autism. To help you with this, Allison has put together an Autism Awareness Sheet which you can pass on to people. *
It's that simple!

So get out there and spread awareness :)

--------

* You could also use the Learn to be Buddies Awareness sheets:
The Underlying Difficulties - and Strengths - of Autism
Understanding Autism Spectrum Disorders

Read more...

Sunday, April 18, 2010

Allison's Story

Kristie with Kelly Nester (Adelaide Newsreader)
at the Autism SA Masquerade Ball

I have a daughter with asperger’s syndrome and she is 11 years old.

She loves music more than anything else in the world. Every day she focuses on her singing and is pretty talented.

She is really good at singing and art. Kristie also painted the picture for the Autism Rainbow Day logo.

She struggles with language and gets anxious very easily. She also has difficulties reading other people’s body language and often thinks others don’t like her when they actually do.

Sometimes I, as a parent, find it hard when she misinterprets what is being said to her, which makes her sad. It is also difficult when she struggles with her school work because she becomes anxious to give something new a go, but she works very hard to overcome these problems.

But then I think about the special moments, like when she sang in front of 360 people at the Autism SA masquerade ball in October 2009. She was amazing and performed like a professional. It was one of those very special and proud moments as a parent.

Her performance:



I love her dearly and when she smiles, she lights up the room. Kristie is our little princess and we love her dearly.


Tell your story
and help build Autism Awareness



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Saturday, April 17, 2010

The Toy Bug: Educational Toys


Getting appropriate therapy and help for your child with Autism Spectrum Disorders can be very expensive, hard to access or can be complicated by your child's difficulty working with relative strangers outside the home.

So what can you do? One thing you can do is to find toys and games that you can use at home to help teach or reinforce skills that speech and/or occupational therapists would be teaching. This perhaps doesn't replace specialist help, but it can make a significant difference to your child's development.

The Toy Bug

The Toy Bug is an online store started by Jo (whose son you met in our last post). She started this store as a result of her own efforts to locate toys used by her son's therapists, or toys that could keep Lachie's attention and help with his development. Her aim is to ensure that other parents benefit from her experience and efforts.

In short, Jo has done the hard work for you. You just need to pop over to her site to scroll through her range of toys and equipment to find what may best suit your child's needs.


Here are some places you might be most interested in looking at on her site:


Lachie's favourites: I love this as it provides some hints about what a child of his age and characteristics might find most enjoyable.

On Sale: Because we all love a bargain :)

Reward Charts and Planners: Routine and explicit, visual clarification of routines and expectations are so important for children with Autism Spectrum Disorders. These charts and planners are a great resource - and could be used in homes and in the classroom.

Books: Because she sells Dave is Brave :)


Donations for Camp Autism:

If you are looking for educational and sensory toys, then there is an added incentive to buy from the Toy Bug. The Toy Bug is donating 10% of its April sales to Camp Autism, an organisation that runs holiday camps for families and children with autism.

(Camp Autism website ... a post about this coming soon)

Read more...

Friday, April 16, 2010

Jo's Story

Lachlan

I have a son with Autism and he is 6 ½ years old.

He loves reading, numbers, puzzles, board games, swimming, going to the park and mum and dad.

He is really good at reading, math, giving hugs and has wonderful manners.

He struggles with noise, too many people, change without being informed way ahead of time, taking a different route to a place he often goes to (like school) and the most scary of all running away from us when out in public and having no fear of cars.

Sometimes I, as a parent, find it hard when people don’t have the understanding or awareness of Autism like when you are out in public and your child has a major meltdown and people stare or you hear comments about naughty children or when people do not understand that you cannot go to a specific outing as there are too many sensory issues for your child to hope with.

We recently went to a friend’s place for a BBQ and there were about 25 people there and we only lasted 10 minutes before our son had a major melt down due to the number of people and the noise. We were unable to calm him down so we had to go home and some of the people where like “what, you are going just because he is screaming” – they had no idea how hard it was for him. So as you can tell we don’t venture out much but I am hoping one day we might get to Australia Zoo or Sea World.

But then I think about the special moments, like when the children in his class could not believe how well he can read and they love him helping them with their reading.

When people compliment what lovely manners our son has – like when he greets someone at the checkout and says Hello …their name (that he reads from their tag), my name is Lachlan, how are you today? And that person is taken by surprise that he knows what their name is. Or when someone sneezes (no matter whom it is) and he says “Bless You”, and when they thank him he says “You’re welcome”.

When he comes and give you the biggest hug and says, "Hug to make you feel happy".


Tell your story
and help build Autism Awareness

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Thursday, April 15, 2010

No Pity Please

Through My Eyes

Music by Fiona Johnson.
Words by Valerie Foley.
Sung by Thanh Bui

".... I don't need pity
I don't need tears
I just need someone to help me
Understand my fears

Show me you believe in me
Let me know that I'm OK
Help me feel safe in the world
And I will find my way

Because I'm not blind but I can't always see
I'm not deaf but things can sound strange to me
I'm not trapped but it's hard to feel free

Imagine what it's like to be me."



The recording of this song was made possible through the generous support of Thomas and Friends and HIT Entertainment.
Autism Spectrum Music ... Posted on YouTube August 17, 2009


This song is aimed to build awareness of what it might be like to live with an Autism Spectrum Disorder. It is available for download on iTunes Australia and all proceeds to Autism Spectrum Australia (Aspect) .




Read more...

Wednesday, April 14, 2010

Michelle's story


Brayden

I have a son with autism and he is almost 10 years old.

He loves anything involving super heroes & special powers but only the goodies ! He loves Pokemon, Transformers, Bionicles, Bakugan and every super hero from Astro boy to Sonic the Hedgehog !

He is really good at construction, give him lego or Knex and he will build things out of his head that amaze me !

He struggles with school and controlling his temper, he doesn’t like noise around him or too much stimulation or being asked to ‘join in’.

Sometimes I, as a parent, find it hard when he gets out of control and I have to physically hold him down and when he gets sent home from school before 10am, and when he says horrible words to me out of anger.

But then I think about the special moments, like when he has learnt something new or had a good morning at school and comes home beaming with pride, when he sits and hugs me and tells me that he loves no one else as much as he loves me !!


Written By Michelle (SA)
Mother of Brayden (ASD ADHD)


Tell your story
and help build Autism Awareness

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Tuesday, April 13, 2010

Finding services

I was just listening to some parents who were trying to find services and supports for themselves and their children with Autism Spectrum Disorders. The consensus was that the most effective way to find what they needed was not necessarily through web research, but through word of mouth. That is, by talking to other parents and finding out what they have found most useful.


Finding other families

If you are looking for people who know a bit about the services in your area, then the best place to start is with support groups. But how can you find a support group in your area?


On the web:

Specific support groups I know about, or have been told about:

A 24-hour hotline: Autism Advisory and Support Service

Rainbowland Playtime (Grenwith, South Australia)

Hunter Connect (Medowie, NSW)

The Autism and Aspergers Support Group Inc (Sydney area)

Hunter Valley ASD Support Group


Playconnect: Playgroups for families with children who have or may have ASDs

Call your State or Territory Playgroup Association on 1800 171 882 (toll-free) for information or search...

ACT contacts

NSW Playconnect groups

NT playgroups (not clear if they have any playconnect groups at this stage, but give them a call to clarify.

Queensland Playconnect


South Australia Playconnect

Tasmanian Playconnect

Victorian Playgroups
(including supported and playgroups for children with special needs)

Western Australian Playconnect


Places to find more support groups:


Autism South Australia's listing of support groups

Autism Queensland's listing of support groups

MyTime support groups



And here is an Aspect document that may be useful:



AUTISM SPECTRUM DISORDER SUPPORT GROUPS – NSW Last updated -


If you have a support group you would like to share, please post it in a comment or contact me and I will add it to this list.

Read more...

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

video

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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Monday, April 5, 2010

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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