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All good things…

by autismourwords on February 22, 2013

It is with some sadness that I write this post.

Nearly a year ago we launched this site with high hopes and great expectations.

Many of those hopes have been realised, and we have all been incredibly touched by the community and friendships that have sprung up around this space.

As many of you will know first hand, when autism lives at your house it is never ever boring. It can at times be incredibly challenging, and even a little bit overwhelming.

Many of us are in times of big transition in our own lives. After some discussion and a fair amount of anguish, we have decided that this site will be closing shortly. We have loved your comments, appreciated your involvement and are so grateful to those who have generously shared their stories here as well.

There is an upside though. We fully intend to keep our Facebook community active, and we all hope that without the pressure of the site itself that space will become even more engaging and a place where other parents can ask questions, share ideas and find support as well. You’ll also still find us on Twitter.

 

We want to take this opportunity to say thankyou for your support and your kindness. Whilst we are all sad that this chapter has come to an end we are looking forward to a renewed energy on our page, and to a little extra time to cuddle our special children.

 

With all our very best wishes,

 

Kate, Marita, Renee, Suz and Twitchy.

 

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Can Asperger’s be cured? A Guest Post

by autismourwords on February 18, 2013

I don’t think so but I do think we can help our children to manage the symptoms and learn to interact successfully and confidently with the mainstream world. This report regarding an American study published in 2012 seems to agree with me.

The report cites a study which tracked 7000 autistic children in California between 1992 and 2001. The study showed that both high functioning and low functioning children could improve over time and that some of the low functioning cohort actually moved into the high functioning category during the course of the study.

In my experience we as parents have it in our power to change the future for our children.

I have a fairly ordinary Asperger’s story. My son beautiful but bewilderingly difficult to manage was not diagnosed until he turned 8 and school just seemed to become overwhelming for him, or alternatively the school were overwhelmed by him.

The pain of all those years of dealing with daily negative reports from teachers and his classmates, and ostracism in the playground for him and I was immense and I was so often reduced to tears. We were often summoned to the school and he and I endured his shame and regret. I realised just what I was putting him through one day when I walked through the school gates and immediately felt the grab of anxiety in my chest. If I felt this what was he feeling?

We moved schools! For 6 months we had some success in this quiet little school. My son had a lovely teacher who seemed to get him. Unfortunately after 6 months this teacher moved on and after a week with the new teacher the behaviour started again. My son found school frightening and was prepared to do what was needed to escape. If that meant behaving badly in order to be suspended that is what he would do! This was not in my mind calculated manipulation but rather the reaction of someone who was really terrified, whose back was up against a wall.

I decided then and there that we would not play that game anymore. Mainstream schooling was just not going to work. I had already spent time looking for alternative schooling options and there weren’t any. Schools were not willing to take on a child with a history of aggressive melt downs.

I could see my son slipping away from me before my eyes. I was terrified of a future that included either jail or mental institutions. I was equally terrified of home schooling my son. He was big, strong and defiant. How was I to cope without any respite from him what so ever? He had kicked our back screen door in, threatened me with a knife, shoved me and frequently verbally abused me.

I realised I had no choice! I hoped that I was right in my belief that most of the poor behaviour was associated with school attendance, crossed my fingers and leapt in.

WOW! Removing school from our lives was salvation for him and our family. Not immediate salvation but slowly and steadily things improved. Today he is back at school. He chose to return late in year 8 and after a very careful transition he is now attending year 11 full time with plans to go on to Uni. He has friends and plays and coaches basketball. This year he is taking on his first paid job and we have organised his first bank account.
I can’t say that we don’t still have to manage his anxieties or that he never shows any Aspiness but I can say that I am no longer worried for his future. I know that he will be able to find his way.

The study I mentioned earlier noted that children from higher socio-economic groups tended to do better. I know that in our case we were fortunate that we could live on one income so I could devote myself to my son’s education. In Queensland home schooling is barely tolerated let alone supported and there are no other fulltime permanent schooling options for primary school children with disruptive behaviour apart from distance education. Distance Education was also not an option for my child as he was so traumatised by his school experience that he was frightened by anything that looked like school work.

Many families desperately need access to early years low stimulation educational environments for children who find the mainstream environment stressful. Children can then have a gentler introduction into the educational environment and anxieties can be faced and worked through slowly. I believe that we were successful because we reduced my son’s stress load down to a level where he was able to function rationally. I wish that opportunity was available to all families.

I am the mother of two children 15 and 13. In another life I was a high school teacher and have also completed a bachelor of psychology. I write a blog and twitter as ParentontheEdge and am aiming to connect with other parents who struggle with children with disruptive behaviour. Many of these children have diagnoses but many do not as they are too high functioning to meet available diagnostic criteria. I am attempting to write anonymously to protect my son from the public glare; he has had enough rejection in his life. You can catch me at
@ParentontheEdge
Or
www.parentingontheedge.ning.com

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When A Little Understanding Melts Your Heart By Twitchy

February 15, 2013

Flying We’re used to people who don’t get it. Odd looks, assumptions. We’re used to having to explain so much to the uninitiated; to boil down all the pertinent information for new people we encounter. Even when we engage new health professionals, we sometimes need to literally tell them our child’s life story. It can [...]

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It’s not fair! by Marita

February 13, 2013
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Oh gosh, how many times a day do I hear that. “Heidi only has to fold two baskets of washing and I have three, its not fair.” “Annie gets to stay up later than me, it’s not fair.” “Heidi only has to read one page of her chapter, I have to read the whole chapter, [...]

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So far so good: elements of a successful transition to primary school by Suz

February 11, 2013

The Batsman has completed his first full week of mainstream primary school. This next pathway follows on from a two and a half year home based ABA program. We are thrilled to be here since we were never sure upon the Batsman’s diagnosis, whether mainstream school would be within his reach. The intensive ABA program, [...]

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Transition Time – By Kate

February 8, 2013

We’ve had a big week at our place. My Little Mate started kinder this week and has blown me away with his confidence! Of course there have been upsets, and he has been hyperactive and easily upset at home, but to see him walk in with a smile fills my heart to bursting. We’re lucky [...]

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What happens if they don’t come back? – by Renee

February 6, 2013

After a holidays that seemed to stretch forever, we are back into it. School started back for us last Friday and I think we are all suffering a bit of a re-entry bump. Overall, Poss is coping well. She is excited about being back, loves seeing her friends and her new teacher seems to have [...]

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Back to School Time – How Did You Go? By Twitchy

February 1, 2013

I’ve been thinking of so many at this time of year; friends, and all of you with little or bigger ones either starting, or returning to school. Most families experience nerves and trepidation before starting new schools, or going back. But families like ours- far more so. Am I understating things just a little? I’ve [...]

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Getting into the routine by Marita

January 30, 2013

Disclaimer: I received two routine charts from Smarty Pants Kids to review and provide feedback on their usefulness for children on the Autism Spectrum.  All opinions are my own.  My girls are so very routine oriented… but adding something new to their routine, or shaking up an existing routine can be exceptionally challenging. During school holidays and [...]

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On autism research by Suz

January 29, 2013

Since the Batsman’s diagnosis in 2010, we have received multiple requests to participate in autism research projects. Some invitations have come via our ABA therapy service provider, others through various online forums and university noticeboards and others by word of mouth. We have participated in quite a few. Some of these have meant testing and [...]

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