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.

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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.

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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

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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.

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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

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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.

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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.

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