Oh Mona!

Day 12
Today we found the best sensory room I have yet to experience. L loved it! We all did.
It was at MONA the museum of old & new art.
We called it the ‘pink & blue room’. Here’s why:

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We had so much fun there. We saw things we’d never seen, we were amazed, delighted and at times confused.
I love seeing kids experiencing art. They are so fresh & honest in their response. I felt like a kid too as we went from room to room seeing the unexpected & the unbelievable.
For an autistic kid there were many wonderful experiences – everything from jumping on a sky high trampoline overlooking the Derwent River to watching jungle book surrounded by some of the original character drawings to a large dark room full of old lounge chairs & old tv’s (screen heaven) to the fabulous pink & blue room.
Oh Mona!

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Sibs day

Day 11
I missed the fact that it was international siblings day (or whatever it’s called) yesterday. I’ve got 4 of ’em plus the outlaws and they’ve always played an important role in my life.
L has had quite a lot of siblings. Foster siblings, but siblings in every sense of the word. They have all grown up loving and adoring their older brother. Do they care if he’s noisy? Nope. Do they care if he pushes them out of his personal space? Nope. Do they care if he has autism? Not in the least.
So this one is for all the beautiful kids who have been siblings to L. I love your willingness, your ability to see his beautiful, playful soul, your persistence in getting his attention. Most of all I love the love you share.

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Flying

We have been jumping on planes since L was a baby. That’s how it is when most of your family and friends live ‘somewhere else’. When you live in Australia, it’s a long way to anywhere.
We think nothing of driving a couple of hours.
When I was a kid it was pretty much guaranteed that we would be spending several days squished into our car, screaming through the countryside, eating up 1300 k’s or so to get down to see our grandparents for a week or so. It was a favourite form of family torture.
These days, road trips are a bit more rare. It’s cheaper to fly.
We were in the air for 3 hours today. L coped reasonably well but had a few minutes of abject terror as we took off & landed. The noise, the speed, the ground falling away beneath us, the clouds – had him clinging on for dear life. We made it though and so did all the other passengers.
Phew!

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School Hols

Day 7

It’s school holidays here in Australia. It’s a bit confusing for L. He keeps checking on whether the bus is coming in the morning. I tell him ‘No darling, we’re on holidays! No school!’

I think he’d rather go to school.

It’s nice to hang out with him though. We are very unstructured in the holidays, so it takes him a little while to ease into the holiday schedule.

Soon though, we’ll be going way out of the comfort zone.

We’ll be getting onto a plane and heading south, to the cold (for us) weather of our little apple isle, Tasmania.

Time to break out the social story – We are going on a Plane.

For those of you who don’t know…Tasmania is here

Tasmania

quite close to Antartica!

We’ll be staying here

Narawntapu

 and here

Lake St Clair

 

and seeing lots of these

Wallaby

and these

Wombats

 

I’ve always found that going on a holiday is far more rewarding than challenging for my little guy. He loves to be out in the natural world, taking the air and letting his senses reign.

I hope I’m right!!

I’ll let you know.

 

Ben and Holly

For the longest time my boy had no interest whatsoever in the tv or any screen activity. We had an iPad for 3 years before he was even willing to touch it. I believe it was because he was unable to make any sense of the images.
L has a vision impairment which has gradually improved over the years but it meant that he had very little visual motivation. Until recently any images we used to help him learn or understand needed to be photos. A drawn or animated image did not make any sense to him at all.
Not any more!
L now has very strong opinions about what should be screening on our tv. Given a choice it would 24/7 Ben & Holly’s Little Kingdom.

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Now there’s watching &enjoying a show and then there’s enjoying it so much that you can’t even hear the dialogue. Squeals of delight, leaping and bounding around the furniture like a high tension spring. L is deliriously ecstatic.

It’s hard to deny him this sweet joy. So I am sharing it with you instead!

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lined up

Day Five

There hasn’t been a lot of lining up at our house. It’s never been a high priority for L.

But lately I am seeing more & more of it. He likes the continuity of it, the sameness, the repetition.

He’s never been interested in Thomas the Tank Engine either. He is now. He’s not obsessed with it, but he likes the show and enjoys watching it. Something he never used to do. TV was not interesting at all.

That has changed. It should be no surprise to me to see these changes. He’s a growing boy, that’s what they do.

But every new thing is a revelation and worth noting.

You never know where it will lead you.

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Surprise Package

Day 4

Parenting any child is a roller coaster ride. Parenting a child with autism is like getting a surprise package every single day. You need to be on your toes, ready for the next exciting instalment.
It doesn’t take long for you to stop predicting, stop looking too far forward and stop assuming anything. Cos just when you think you’ve worked something out, they are going to turn that on its head.
Everything you thought you knew about babies, parenting, milestones, bonding, finger food, play, bath time, sleep, friends, family, EVERYTHING will no longer apply.
You have this kid, right in front of you and they don’t fit the description you had in your head. But there they are, the most precious and amazing little person and you love them beyond all reason.
For my little surprise package, I have had to allow him to lead me. We’ve been around many blind corners, up too many dead ends to count. It has felt at times like we’ve been stuck on the roundabout, going around & around while he works out which direction he wants to go next.
I am not guiding my child through life, he is taking me on a secret discovery tour. One nobody else gets to go on. It’s the ultimate mystery tour.
As time goes on, I’m less worried about the ultimate destination. The ride is where it’s at right now, for me. And for him.

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Blue (in the face) for Autism

Day 2

It’s World Autism Day today – April 2.

People all over the world will stand up, go out and face the neurotypical world dressed in blue. As night falls buildings, bridges & iconic landmarks around the globe will be lit in blue. Most people won’t notice or have any real awareness of the reason behind it. But for the families and friends of the autism community it’s a day or great significance.

It’s our day. It’s when we get to reflect on our experience of autism. Whatever that might be.

I recently told a friend that I don’t identify with the ‘Autism Warrior’ tag. I’ve met a few warriors in my time and I’m definitely not one of them. To me it’s an aggressive word – a fighting word. I’m not fighting autism. I’m learning more about it every day. I’m learning about love and about acceptance.

That doesn’t mean that I’ve thrown my hands in the air and given up. My hands are in the air but they are dancing and clapping, fist pumping and celebrating. It definitely doesn’t mean that I’m right and everyone who doesn’t agree with me is wrong. Our community, like every community, is diverse. We all have different experiences of autism. Every autistic person is as different from each other as you and I.

It is about finding the way to parent my boy that suits us both the best. Today, as my facebook feed fills with messages of pride and love, acknowledgement and celebration I know that the world is changing. There is more awareness than there ever has been. We know more about autism than we ever have. That is what I want to reflect on today. I’ll save my challenges for another day.

Playground fun with sand

Playground fun with sand & ribbon

 

April = Autism Acceptance

It’s that time of the year again. Time to break out all those posts I’ve been working on in my head and actually write them down to share the with you. For the last few years I’ve done what I call my Autism Blogathon – a blog a day for the month. Brace yourselves for the onslaught!

Day One

It’s Tuesday. That means we’ve been up busting a move to get fed, dressed and out the door. I scoot through the morning traffic like a rally driver to arrive on time at L’s speech therapy appointment. Just made it today. I just make it every week.

Speech therapy has been a part of our weekly schedule for many years now. It’s also part of our daily lives as most of the therapy is done at home. Our lovely speechie Judith sets the tasks that we work on throughout the week. Over the years I think I may now have done almost as much study as her! I’ve done courses, learnt Makaton (a sign language), I’ve read and practised. I’ve repeated and slowed my speaking style. I know what a preposition is. I’ve perfected simple instructions. I’ve left space for processing and response. Years and years of it. Thousands and thousands of dollars.

It’s paying off.

It’s so exciting to hear the new sentences, the questions and the answers. L is following directions (miracle!! right there!!!). I can negotiate with him. I can help to calm him with words. He can wait, knowing what is coming next. We no longer live in the world where it’s instant gratification or the sky is falling. It’s a wonderful thing.

I was never certain that my boy would learn to talk or choose to use the spoken word as his form of communication. He is learning and he does choose. Every day.

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