Road Trip

Day 13
We hit the road today, heading north to the Narawntapu National Park.
It makes me realise what an amazing distance we have travelled in our autism adventure.
The first road trip I did with L was the most hellish 4 hours of my life! Non-stop screaming and distress – it was awful for him, for me, for everyone. Nothing could help him to feel safe and secure.
Today was a dream by comparison. He was able to conceptualise that we would be going for a drive and be happy not knowing the destination. Instead, he wore his Bluetooth headphones and played with the iPad, listening to music, playing games and enjoying himself.
We stopped for lunch at a cafe that had an outdoor garden. So he was able to have run & leap about.
More & more driving until we finally reached our destination at dusk. We are staying in an old farm house in the park. It’s used by the rangers who stay & work up here. It’s full of cast off furniture & horrible old carpet but we are having a lovely time!

We’ve got the fire going

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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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Lisa

My boy is 7 and is in his third year at school. He attends a ‘special school’.

It is indeed a special school. There’s just over 100 kids who attend there and each class has around six kids in it. I feel pretty lucky that his school is one where there are many experienced and dedicated teachers and support staff. They are very child focussed, every child is well known to the staff and most kids enjoy being there.

When L started school at the age of 5 he went into Lisa’s class. He really bonded with her during that first year and made some great progress. I felt like we’d hit the jackpot when he was once again placed into her class the following year. Continuity is such a precious thing for most kids, but especially for L. I could relax, knowing he was in good hands. She was able to draw him out and engage him and most importantly, teach him.

Third time’s a charm and Lisa is once again L’s teacher. For the third year! Winning!!

Well, yes. It was a relatively easy transition back to school, but it’s been a tough term. L’s behaviour at school has been challenging with lots of attention seeking aggression and noisemaking. We’ve been working through the issues together, fine tuning the environment, giving him sensory breaks, physical exercise and plenty of one on one time.

Today it finally clicked. For me. I had a meeting with Lisa and as we were identifying his IEP/ILP goals and talking through his behaviour management and self regulation options, Lisa told me a couple of little stories about my darling little boy.

And now I know the truth! She has STOLEN his heart!!

He often asks about her at home. ‘See Lisa today?’ which I interpreted as him checking on whether it was a school day or not. Wrong! He misses her and wants to see her. How do I know?

Well here are two of the stories Lisa shared with me today. The class were recently doing an activity on the lovely wide and shady veranda outside their classroom, Lisa needed to stay inside to work on something. L was not happy about being separated and spent the entire time standing at the window looking in at her, quietly, longingly calling her name. When she is not in the classroom, L goes to the iPad, scrolls through the photos till he finds one of her. Ahh, there she is. Everything’s OK.

I asked her if she minded being stalked.

Yeah, I know he still loves me. But he loves her too. I don’t mind. She is a wonderful person. It’s early days yet, but she might just be that one teacher who makes all the difference in his life.

Teachers