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.

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

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 be draining.

So if we happen upon exchanges that don’t really need us to do that, it can be a very pleasant surprise. Heartening. Uplifting. Emotional, even! Three happened to me recently and I’d love to share them with you, because heaven knows there’s been plenty of the rest. So- to happier experiences!

My son attended another computer-based school holiday course this Summer. On the first morning I always wait until all other attendees are signed in and settled before approaching the teacher. I introduce myself, and my boy. I ask my son to be seated. I request a quick few words and I have it down to a concise paragraph in case I am dealing with the uninitiated:
“He’s a good kid that needs extra help. He never starts anything but please be mindful not to sit him next to anyone who might tease or provoke him, he’s been bullied before. Please don’t let him monopolise your attention, because in his deep interest, he sometimes forgets there are others in the group.” And then: “My son has Aspergers.” I look for a sign of recognition.

“Oh- he’s an Aspie? (smiles) I get along with those kids best. We understand each other (smiles again). We’ll be fine.”

Relief- we’ll be looked after. It’s moments like these I want to hug a stranger.

My boy was out of the room when I rang his friend to check he’d be ready to be collected. It was the first visit for a while and much growing up is happening these days.
“You know about (Mr13), right?”
“Um, yep.”
“Can I ask you a favour please?”
“Sure.”
“I know he can get stuck on a topic and forget about turn taking at times. Can I ask you as his friend, to please tell him if you’d rather do something else, steer him in the right direction rather than perhaps get uncomfortable with him? That’d be best for everyone, okay?”
“Yep, sure. No problem.”

Great kid. It was a small thing that felt “wow”. Friendships are so important, especially if they are few.

The third was only this week. My kids are taking ice-skating lessons and they are going great. I had concerns with both my kids being in the same group, just regular sibling stuff. So I had a quick word with the teacher on our second visit:
“They can be very much “siblings” at times, don’t be afraid to set them straight,” I smiled. Then I leaned in: “He has learning differences. He has Aspergers and can get a bit dreamy or excited at times. He’s not deliberately ignoring you.”
She smiled to me and said she’d already picked up on it, her day job was in the medical field:
“He’s a great kid, doing a great job. I’ll keep an eye on them. We’ll have fun.” She smiled.
“And you, Mum, deserve a gold star.” Happy tears are only a millimetre away.
Another stranger I wanted to hug!

Have you ever just met someone who made you feel like you’re in really good hands?

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, it’s not fair.”

“Annie brushes her own hair and you brush mine, it’s not fair.”

Siblings!

Sometimes, I want to bang my head against the wall.

Your sister is younger, your sister is older, I give her the chores she can do, we know you can read a whole chapter.

Everyone is different, it is okay to have different expectations.

I love you both.

What I ask of you is no reflection of my love for you.

Yes I will make sure you get exactly the same amount of hot chocolate each, yes you can measure it if you really must.

Tell me they grow out of it one day?

Image sourced from here.

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, with its structured, highly individualised and systematic approach has made the most extraordinary difference to our boy. He has truly learnt how to learn.

The Batsman has, as is often his way, taken the first week of school in his stride and managed way better than his very anxious mum. He very regularly exceeds whatever expectations we might have.

It’s a time of transition for many and I thought I would share some important elements of what has so far been a successful step into a new world. It’s still early days and of course there might be things that go wrong in the days ahead but for now here is what has worked for us:

Starting the process early

Choosing the school early enables details to be taken care of way before the actual transition time. Building relationships with key school personnel, getting to know the school and taking care of funding applications early has really helped with being able to focus on the transition period because lots of boxes were ticked ahead of time.

Transition program

Participating in every aspect of the transition program provided by the school has helped the Batsman feel like school is a familiar place and took care of demystifying things like the toilets and the playground. Our school ran 3 formal transition sessions for all the preps. We were also able to a participate in a 10 session, one morning a week program that they provided for 20 preps throughout term 4 last year. School became part of the routine for all of us.

Social story

I wrote a social story that covered all the key aspects of starting school. I was lucky that my friend ‘T’ shared her template that I was able to personalize and build on. We turned the social story into a PDF document that was then able to be read on the IPad. The Batsman loves reading the story and looking at the photographs, both with us and independently. We plan to keep adding to the social story as the school year unfolds so that it becomes a kind of living journal. I think it will definitely help the Batsman to process things along the way.

Rehearsal and spending time in the school grounds

We live very close by to our primary school and we have spent much time through January playing in the playground or riding our bikes around the school oval. The school has really become a comfortable and familiar place, not a new and scary one. We also did some rehearsals with lunchboxes, uniforms and school bags.

Keeping it low key through January

We really worked hard to keep the time prior to school starting very low key and calm at our house. At times this was far easier said than done. We did lots of family fun things like swimming and day trips. We talked about the Batsman starting school only when he raised it in the conversation and we dodged all those well-meaning folk who love to build up the “so are you excited about school?” chatter. The Batsman was quite genuinely relaxed when school began so I think I must have done a reasonable job at stashing away my terror.

Support

Our ABA provider is supporting the Batsman and us through the transition and on an ongoing consultancy basis too. This has helped already with building the bridge between home and school and ensuring there is a good handover of information that will help the Batsman and his teacher as they get to know each other.

So there you go. So far so good. Fingers and toes crossed for more successful school days ahead.

Have you got any transition tips to share? We would love to hear them.

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 formed a bond with her quickly.

She is tired, gone off all her food and is refusing to eat, but still wants to go to school. Sleep is a vague thing that may or may not happen at some point closer to midnight than 8pm, but she still seems to be functioning ok. For now.

To be honest, I think it’s me that’s struggling the most.

The year before last, after a series of unfortunate events (yes, it was almost like a Lemony Snickett movie) we ended up with the most lovely teacher for 18 months in a row. To be clear, she wasn’t the cause of the unfortunate events, she was the prize waiting at the end.

And she was wonderful. It was like we came into the light after years in the darkness. Suddenly we had a teacher who prepared social stories unprompted, developed visual timetables and ensured that all bases were covered.

Of course this was eaten up, hungrily, by us as every little thing made Poss that little bit more confident. That little bit more secure. She started to come out of her shell, engaging and participating. Listening and learning. Laughing again.

At the end of last year, we knew there would be a transition. We knew we couldn’t have her again – 18 months and the kids were ready for the challenge of a new teacher and to be fair, she was probably ready for a new group of kids! But god, if there was any way I could bottle her and take her with us for the rest of our school journey, I would have.

So we started this year with a new teacher. She was well prepared, and has been well supported by the old teacher as well as the school. Poss loves her, which is of course, half the battle.

But. Things are not quite right. We still don’t have the visual timetable, her aides hours have been slightly cut and shuffled around (with no consultation with us) and we have a major school event next week and as yet, there is no social story.

I know it’s early days. And I know we have been spoilt before. I hope that it’s only teething problems, I certainly don’t want to be the shouty parent.

But we have come so far. I can’t bear to think what will happen if these things don’t appear, if they don’t come back.

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 written before, this time last year I was a wreck with my daughter starting primary school and one original, broke-the-mould-when-they-made-him young man entering the daunting world of secondary school. Luckily, on the whole, we all got through it alright. Young Miss 6 doing the best of all of us, I would say. But that’s the thing: we have no particular concerns for her learning experience.

Some of you, like Suz, have been working incredibly hard- sometimes for years, to bring your beautiful young souls up to speed so they can start school with their neurotypical peers. Teams of people and tons of hours and dollars have been behind the lead up to these milestones. It’s so incredibly heart-warming and inspiring to think that some little people (and bigger ones) are now able to go ahead and do this when it was never going to be a guarantee. Some of us cannot plan too far ahead, and are incredibly thankful for such achievements. Few outside of our experience can really know or understand just how much goes on behind the scenes just to make it to the starting gate with everyone else.

In our own case, Mr13 returned to Year 8 yesterday. There was a bit of drama with class placement for Mr13. I won’t go into the details here, but it wasn’t going to work the way things were, in fact it would have been disastrous. Time had run out to rectify this at the end of last year, so we went on holidays with no resolution. My boy was increasingly edgy as the holidays came to an end, sleep a big problem. Added anxiety we did not need.

I spent a frantic time on Wednesday trying to land a solution. Luckily I got a call back that evening, a clear suggestion was made and I ran it past my boy before he went to sleep. I discussed it with my husband 10pm that night. Seat of the pants stuff, the type of nervy backstage work required to keep the show running smoothly. Stuff most families never have to consider.

Despite two weeks plus of preparing for 2013 in the 2012 early commencement programme with a one class, Mr13 began Year 8 in a completely different one today. Not ideal, and he was nervous, but a much better outcome long-term. He was met first thing in the morning by the Wellbeing Officer, then taken through to class personally.

When Mr13 came home I asked him about his day. He was fine- relieved, but utterly exhausted. He’d had had a good day, our solution was the one and things will work out from here as best they can, I’m sure. (Thank you Mr Wellbeing Officer, from the bottom of our hearts, as well as for your follow-up call after school!)

Never a dull moment for families with additional needs, nor for the state schools under pressure with desperately insufficient support funding, ahem.

How did your school commencement, or return go?

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 when we go away, the biggest challenge we face is trying to maintain a routine they are used to, under new circumstances. Especially when these school holidays Mum has decided to go all hardcore with enforcing a 2 hour a day electronic entertainment time limit. Oh My!

My girls needed some sort of reward for sticking to the rules and a visible way to track that they were making progress towards their goal.  Enter in the Routine Charts from Smarty Pants Kids which we used during term time to make sure chores and after school routine were happening.

When we went on holidays I worked out the parts of our daily routine that caused the most issue and these were what I put onto the Routine Charts:  Folding the Washing, Sticking to the 2 hours iPad time, Going to Bed and Brushing Hair…. apparently you only need to brush your hair on school days, I could just image after 6 weeks of school holidays what the girls hair would look like if I let that one slide through.

I find the Routine Charts work for us to help initiate a new routine and get things settled into place. Once things are running semi smoothly the girls tend to forget about the charts and not ask for their ticks or the reward. The pen used on these charts wipes off with a damp cloth so it is easy to clean it off and start again … the bonus is that it doesn’t wipe off with a dry cloth or fingers, so Annie hasn’t yet been able to manipulate it.

With school starting tomorrow I will be wiping down the charts to pop a new morning routine on.

How do you establish new routines?

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 research assessments of the Batsman and his skills, others have involved me completing interviews and questionnaires and even the Batsman’s neurotypical little brother, the Bowler, has got in on the act participating in research projects based around siblings of kids with ASD diagnoses.

Research is such an important quest and it is this that has driven my decisions about doing it. I have viewed our participation in various research as one way that we can leave a legacy for those who tread the autism road behind us. But of course, it is always a tricky balance to ensure that being a part of these projects does not add unnecessary stress and angst to our little family, particularly to the boys.

This week I said no to a research request. No matter which way I looked at it, I couldn’t justify a 5 hour research and travel time combination for the Bowler to be part of a study in the week before the Batsman begins primary school for the very first time.

And even though I am ok with having said no, it’s still nagging at me. Just a little.
So I am curious, have you participated in autism research? What are your thoughts on it?
I’d love to know.