I follow several blogs and Facebook pages that have ‘autism’ as their central theme, most of which are written and/or managed by people who have a diagnosis themselves.

One of these, which I’ve only recently discovered, is Autistic Not Weird — a webpage/Facebook community run by Chris Bonnello, a primary school teacher with Asperger’s who has turned professional Autism speaker.

A recent post by Chris said this:

We spend so much time and effort talking negatively about autistic people — discussing only their difficulties and calling it ‘autism awareness’.

What if we took some of that energy and made people aware of HOW AWESOME autistic people are too?

— Chris Bonnello

I believe he makes an excellent point. Looking back at many of my posts, I don’t think I’ve talked negatively on the whole but most of them are ‘this is the experience that happened to us and this is what we did about it’ or ‘look how much he’s improved’ or ‘if I’d known then what I know now’.

There are times, few and far between thankfully, I find myself thinking ‘why us?’, ‘why him?’ or ‘it’s not fair’.

Every parent of a child with special needs thinks this at some point (and if they tell you they don’t, they’re covering up). The thing is — it’s okay to feel this way as long as it doesn’t overwhelm you and become the norm.

For those times when I do feel like that, Chris got me thinking it would be nice to have a little list of all the things that are wonderful in our Asperger’s World.

joy of autism ID-100296936
Image courtesy of Stuart Miles at FreeDigitalPhotos.net

Raising our child with Asperger’s Syndrome means:

♥ we are allowed into a world where we can see things from a perspective we would never have considered otherwise

♥ we get to slow down, seek out the really valuable and fun activities, rather than trying to fit in every experience, everywhere and with everyone

♥ we appreciate more — the little successes and small joys are so much more worthwhile

♥ we have developed an insight into people — family members, friends and the community as a whole — often seeing people for who they are, not who they claim to be

♥ we have an amazing opportunity to learn from a young mind who can express himself beautifully and with honesty

♥ we have developed empathy and can use it to help others

♥ we get to live with a unique individual who is sensitive, serious, has the quickest mind and wit — and is as funny as can be, making us laugh every day!

Next time someone ‘sympathises’ and tells me how hard things must be — I think I might need to set them straight.

Yes, things are tough sometimes. The learning curve is momentous. There are slumps. But the highs and the benefits and the joys outweigh these negatives — if only we know how to access them.

Living outside the box is a lot more fulfilling than living inside it with everyone else!

Thank you, Chris, for opening our eyes.





OMG! He did it!

Image courtesy of Stuart Miles at FreeDigitalPhotos.net

There are no adequate words to describe the joy a parent feels when their child has achieved something and you have to say to yourself, “See — there was nothing to worry about.”

Nothing in the world feels as good as your child proving you wrong.

Camp has happened!

It was a success!

For three days and two nights, I’d lived with my mobile phone glued to my side. Every time it buzzed or rang, my heart stopped.

All for nothing!

It was all okay!

Geordie stayed both nights, ate the food, participated in the activities — and he talked openly about it all on the way home and over the next couple of days.

Not everything was brilliant:

♦ the food was sub-standard (especially the lasagne ‘which had way too much cheese’ and the fact ‘they only had white bread’)

♦ damper cooking was unsuccessful (burnt black like charcoal — inedible)

♦ boys in his cabin talked all night and the ones at his table did gross stuff with their food and the water jug

But there were significant highlights:

♦ the giant swing was ‘scary but awesome’

♦ the flying fox was fun

♦ all the other activities (team initiatives, movie night, ‘a minute to win it’ games) were pretty good

♦ the girls got the bats in their cabin, but the boys didn’t

♦ ‘You should’ve heard the boys in my cabin burp!’


I’ve written about the significant preparation that went into getting Geordie to go on this camp.

Perhaps stupidly, I asked Geordie if he thought us taking him to Birrigai beforehand helped him when he went with school — but I needed to know.

At first he said, “Nah.”

Then he said, “Well sort of — a bit.”

I’ll take that. If what we did helped just a bit, then that’s good enough.

As always, every new experience is a massive learning curve for all of us.

And it’s with the support of everyone around us that we get through it all.


The importance of preparation

As I write this, Geordie is at Year 7 camp.

Not so momentous, maybe, but for my boy it’s huge. He’s never been on a school camp — not because he hasn’t had the opportunity, but because he’s never wanted to go before.

I fully suspect he didn’t really want to go to this one either — at least not the ‘I’m so excited I can hardly contain myself’ wanting I often see in other children in the lead up to camp. However, he agreed to go because this is part of who he is becoming as he matures — the person who participates because he is part of the group.

I’d been working out what to do to encourage him to go ever since I found out about the camp last year. (Actually, it’s been in the back of my mind since he was in Year 5 and didn’t attend camp — all schools take their new Year 7s on camp.)

There are multiple reasons why he doesn’t enjoy this type of activity, but they all boil down to the unknown: unknown people, unknown location and unknown activities.

Geordie’s school use Birrigai for their Year 7 camp and, because of this, I figured the last two unknowns were things I could do something about to help him prepare.

Unknown location:

Facts: Birrigai is a 45-minute bus trip from the school. They also hire out their facilities to groups during school holidays and weekends.

Solution: Take Geordie to Birrigai for an overnight stay.

Unknown activities:

Facts: I have been there more times than I care to count — as a teacher running a camp excursion, for teaching professional development days and as a student myself. In this time, I have done every activity they have on offer. I know the grounds like the back of my hand.

Solution: While I can’t have Geordie experience all the activities, I can show him where they are situated and describe to him what will happen.

I contacted Birrigai management and explained the situation. Hey Presto — we were in.

** As an aside, I should explain at this point: I personally do not like Birrigai. This is not based on the place itself — it’s a lovely setting, well maintained, flushing toilets — but rather on my own experiences as a student and a teacher. This forms a huge part of The Things We Do as parents to help our kids.

Once I’d booked, I sat down with Geordie and told him where we were going and why. This has always been a vital part of my communication with Geordie — openness and upfront explanations of our actions:

We are going to Birrigai so you can see what it’s like and so you know what to expect when you go on Year 7 Camp. 

Note the use of when in that sentence, not if.

I’ve learned in the past, if I give Geordie an out, he’ll take it. Who wouldn’t?

But I also tried to make it clear that, while I wanted him to go, if he got there and it was too much, I would pick him up in the evening and take him back in the morning for the daytime activities.

Compromise and negotiation are key.

Anyway, as it turned out we had the whole camp to ourselves. This was brilliant as we were free to explore every inch of the place as and when we wanted.

We were lucky that Geordie’s mate, Owen, was available to join us.

Watching them explore — I think they had a ball. We talked about the different areas, the history of the place (it all but burned down in the 2003 bushfires, so I told them what it used to be like before that and how much better it is now) and they got to see the areas usually out-of-bounds for students.

Afterwards, once we’d returned home, Geordie was fairly non-communicative in his assessment of the place.

It was alright.

That was pretty much all I got.


I didn’t get: ‘I hate it,’ or ‘I’m not going back.’


He’s there right now! (And it’s been 24-hours with no phone call.)

As much as taking Geordie and Owen to Birrigai overnight put me out of my comfort zone I am ever so glad I did.

Taking away some of the unknown may not have been a huge contributor but I know it played a part.

Familiarity is important.

Preparation is important.

** And a second aside: I saw a new side to Birrigai myself — it’s a really beautiful, peaceful place when you’re not there with 100+ too-excited-to-sleep children. My full admiration and thanks go out to the seven staff members who are there right now.


resilience – at what cost?

Resilience: an ability to recover from or adjust easily to misfortune or change

We — parents and teachers — spend a lot of time encouraging and teaching our children to be resilient.

Resilience is necessary to survive the chaos of daily life. Without resilience, we’d all be quivering messes at the end of each day. This is what we’re taught.

As a teacher, I’ve frequently given praise, handed out merit awards and written report comments focusing on a child’s demonstrated resilience.

As a parent, I’ve told my children how proud I am of their persistence and resilience.

Resilience is the good guy — there to help us.

Or is it? Is resilience all it’s cracked up to be?

Is there a cost?

I’m becoming increasingly convinced the focus on the importance of resilience is coming at a cost, especially for our children who are on the autism spectrum.

That cost is wellbeing.

Two recent events have hammered this home for me.

The first was when a colleague was telling me about a child she works with. The girl is in Year 1, diagnosed ASD (possibly Asperger’s). The class was completing an independent writing task at their desks. The room was silent. Everyone was working.

The child in question had her head down, pencil moving across the page — for all intents and purposes, engaged and working hard.

Upon a closer look, though, she had silent tears streaming down her face.

She was asked, ‘Are you okay?’

She nodded, writing furiously. The tears kept falling. She had a task to do and although it was distressing her, she knew she had to get it done.

Score one for Resilience.

Negative one for Wellbeing.

The second event still brings me to tears even though it was over a week ago.

Geordie told me he wanted to attend the school swimming carnival. I cannot emphasise how huge this decision was. He had no intention of entering races but was keen to participate in the free-time swimming at the end of the day.

New rules in our state say children must pass a swim test if they are to be allowed to access the deeper swimming pools. There are three components to this test — all designed to appease the authorities the child will be safe should he get into difficulty in the deeper water.

Geordie is not a strong swimmer. He practised several times for this test. I knew it was going to be touch and go if he passed.

When he came home after the carnival, I asked him how the day had gone. He didn’t pass the test, he said, but he’d been able to swim in the smaller pool and had a good day with his mate.

Resilience — score one.

I received a phone call, about an hour later, from one of his teachers.

Turns out he had a crap day. He didn’t swim (even though he was allowed to go in the smaller pool) and spent the day sobbing on the benches. No tears — just heaving, gut-wrenching sobs that didn’t stop despite every effort from his mate and his wonderful teachers to find out what was wrong.

The only question he could answer, I’m told, was ‘Do you want us to ring Mum?’

His answer was ‘No.’

Resilience — score one.

I talked to him later. There were tears — lots of them, from both of us.

Wellbeing — negative one.

No, he said, nobody teased him.

No, he said, he didn’t get hurt.

Could he tell me why he was so upset? No.

I think, and I’m only guessing, he was deeply disappointed he’d failed. Failed the swimming test, yes, but also failed us by not having a good day as we’d hoped.

Geordie cried silent tears during dinner, while watching TV and when he went to bed that night.

Then he watched me cry with him and he hugged me.

He was being so resilient. He’d done everything we’d taught him to do; everything we’ve worked for years to help him achieve.

And what did it get us? What did it get him?

Being resilient is one thing.

Feeling overwhelmed, feeling stuck, feeling you’ve disappointed someone and feeling like you’ve failed — all while still trying to be resilient — is something else entirely.

It’s times like these resilience becomes a damaging factor.

It’s times like these I want to tell resilience to go and bite itself.

We don’t need you all the time, resilience.

Lesson learnt.

Image courtesy of sritangphoto at FreeDigitalPhotos.net





First week of High School – tick

I’ve just watched Geordie ride off down the path on his way to High School. Last week he walked but his friend rides, so Geordie wanted to ride too. He was a bit wobbly — his bag was a tad lopsided and made him keep veering to the left. A few false starts and he disappeared around the corner — leaving me standing there, hoping he’ll make it to school in one piece.

The life of a parent of a child with special needs. Or any parent really.

We are in our second week of High School.

G and O Day 1
Best mates – on their way to their first day of High School.

Last week was pretty much a non-event. Geordie went to school, attended classes, participated in a lot of getting to know you activities and came home each day very tired but happy.

He memorised his timetable (which I am still grappling with to decipher) and knows where all his classes are.

He likes all his teachers.

He’s made a few new ‘friends’ (i.e. people he feels comfortable to work with in class).

He loves agriculture — even though, or maybe because, the teacher made them clean out the stinky, stuffy chook pen in their first lesson.

He really, really likes the Year 7 Coordinator, who he has been lucky enough to score for Mathematics and Digital Media.

He has a few classes with his best mate, and a few without — and he’s okay with that!

I could not have hoped for a better start.

We did everything we could to make this transition smooth and we can pat ourselves on the back as much as we like, but the truth is — Geordie was ready. He’s done the hard yards, he has the determination and the resilience. He made this happen.

Knowing how well he’s managed this first week (and the lead-up to it), if I could go back and do it again, I still wouldn’t do anything different. Except — I may not worry quite as much about it.

Transitions are hard. Change is hard.

Nothing is impossible.

My advice to my past-self (and my future self for the next time we have a transition of any sort):

♦ provide lots of opportunities to familiarise with the new setting/schedule/procedures

♦ talk about expectations

♦ listen to and acknowledge concerns (including your own)

♦ give associated parties a ‘heads up’ about what they could expect and an opportunity to show what they can offer

♦ when you’ve done everything you can, sit back and try to relax —it will be okay (and if it’s not, you’ll know what to do).

G and O Day 1 inside
“We’ll be right. We’ve been here before. We know our way around.”

The things we do (part 2) … Or, what I originally intended to write last time

I’m quite sure I have a reputation amongst my son’s teachers as ‘that parent’.

You know the one I’m talking about—that parent who frequently emails her child’s teachers; that parent who expects some communication back from the school; that parent who has to deal with her child having a meltdown in the afternoon, or the following morning, and wants to know what happened during the day.

You know that parent.

I am that parent, and I make no apologies for it.

That parent is her child’s advocate, often when nobody else is.

That parent understands her child and what makes him tick, tock or not.

That parent also feels guilty for bombarding the teacher but knows it is a necessary evil to achieve the best outcomes for her child in the long run. (Sometimes that parent also goes overboard—at those times, apologies are warranted, but tolerance and understanding are also appreciated.)

Above all else, however, that parent wants to be on the same team as her child’s teacher—working together towards a common goal; comfortable to speak with the knowledge she’ll be heard but also with the ability to listen.

Sometimes that parent gets lucky and the child is paired with a teacher who just gets it. Other times that parent draws the short straw and winds up fighting an uphill battle for the entire year.

It’s a part of life—the Asperger’s journey—I’ve come to accept.

With high school looming at the end of last year, I began another of those journeys along a totally unchartered (for me) path. I actually started last year by contacting the high school (in the first term of Geordie’s Year 6 year) to arrange visits and discussions. I kept in contact (not bombardment, just the occasional ‘touching base’ email) throughout the year and ramped up the contact in Term 4.

I soon realised this year was going to be a ‘lucky year’ for that parent because the Year 7 coordinator ‘gets it’. He responded to every one of my emails with the information I required. He organised extra visits. He ensured Geordie was paired with his mate during the visits AND in as many classes as he had control over this year!

My last email to him was a simple one in which I only enquired what was needed on the first day of school. (You’d be surprised how different schools are with this requirement.)

His response showed his absolute empathy and understanding—not only did he answer my question, but also gave us a host of information about what day 1 would entail.

That parent is extremely happy.

That parent has a very good feeling about this year, and those gestures and responses to my enquiries were all it took.

It’s simple.

The knowledge that we are a team, both of us looking out for Geordie’s best interests, has set the year up perfectly—for me, for the new teaching team and, above all, for Geordie.

So—the things we do as parents?

We never give up!

We go out of our way to ensure the best pathway for our child—even if it means being that parent.

This includes: the emails; the phone calls; the questioning; organising extra visits; going to a camp you really don’t like to ensure your child is familiar with it (more about that in a later post).

We never give up! 

Did I say that before? I don’t care because we don’t.

It’s what we do.

And it works.


never give up
photo credit: https://www.youtube.com/watch?v=wwC6xjZdLHQ (If you go to this page, there’s a beautiful piece of music too.)


The things we do

Every parent will go above and beyond for their child.

Every parent will feel their child’s failures, pain and successes as if they were their own.

Every parent will worry about their child — whether said child is a newborn or an independent adult.

Every parent of a child with special needs will go that one step further.

We often don’t get a break — if we do, we often spend it feeling bad about inconveniencing someone else.

We regularly forego social activities, training sessions and ‘me time’ to be there for our child.

We often feel like we just want a normal life — but then immediately feel guilty for doing so.

We fear for the future — what if something happens to me?

We fight for our children — often at the expense of being labelled as that parent.

We worry — what if they are getting bullied/have no friends/feel lonely/feel scared … ?

We feel useless because we can’t always protect our child from the above.

We occasionally let our guards down and have meltdowns ourselves — then spend time apologising for it and feeling embarrassed because ‘someone else has it worse than me’.

We are often not very kind to ourselves.

We ride a roller coaster of emotions each and every day. We don’t step off this ride — EVER — but if we manage to pause it briefly, we are exhausted.


We love our children unconditionally. We love them to the moon and back — again and again and again.

We would not give them up — or give up on them.

We would do anything for them.


Because they bring us joy every day and teach us about the world.

It’s as simple as that.

That feeling overrides everything else and makes it all worthwhile.


heart ID-10013169
Image courtesy of Idea go at FreeDigitalPhotos.net



** This blog post did not turn out the way I thought it would. I sat down intending to write something totally different – but these words spilled from my fingertips. There was obviously a reason for it – so I’m leaving it. I may do a part 2 later – and write what I actually intended to write.