Cupacake Monsters

cupacake monsters

cupacake monsters

Photo a day in April for autism acceptance

I took these in to N’s day care today. It was for a very special little celebration – his last day at this centre.

On the days that the two little boys are at day care, I have about 45 mins or so in between L (my beautiful ASD 6 year old) coming home and having to go and pick up these guys. I try to make this one on one time with him special. I get him a drink – today he had 2 cups of tea – and a snack and I work on engaging him in conversation. Generally though, there’s only one thing on his mind.

‘Go in car. Get N & J’

So we did just that!

 

 

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Pushing The Envelope

I seem to have rather a lot going on at the moment. That could possibly be the understatement of the year.

There is the regular high level of activity in a house with three little boys: school, swimming lessons, music, play dates, play doh, toilet training, day care etc. Then there is the autism ‘stuff’ – speech therapy, sensory diets, daily communication with his teacher, horse riding, managing & monitoring behaviour, anxieties & meltdowns, technology, respite services, appointments, etc.

not mine!

not mine!

Then there is the child protection layer – dealing with the bureaucracy, three different families all with their own set of needs and issues, confidentiality, attending training, attending therapy, research and reading to stay informed on various incredibly important and current issues, endless filling in of forms, home visits, pyjama angels, paperwork etc.

I’m exhausted just thinking about all of these balls I need to keep in the air. But this year has just jumped up and turned the balls into chainsaws. That makes it sound bad…it’s not bad. It’s actually pretty exciting and being a single parent…well I gotta get my kicks where I can.

juggling

What is so exciting? A couple of new projects are getting off the ground.
I’ve started a new blog. A private blog which is for foster carers in my local region. After a year of discussing the idea, getting approvals and educating people about the blogging world, creating and tweaking the draft, it’s finally gone live. So I’m pretty excited about the potential for this blog to provide some great support to local carers. I’ve got a lot of blogging to do!

I’ve also become a signed up member of the P&C at L’s special school. It’s his second year at this wonderful school for special needs kids. I’ve been absolutely thrilled with his progress since he’s been going to school. He loves going there (thank goodness), their program is dynamite and his teacher is just wonderful. She ‘gets’ him, she cares about him, she has her work cut out for her, but she is doing it…he is learning.

It looks like L will be going to this school for many years – all the way through. So, I thought I’d better get in there and be an active part of his school community.

But the biggest item on the agenda is a project I have cooked up with another wonderful autism mum. In looking to the future for our kids we know there is precious little support out there as they transition towards adulthood. So we figured that if we start something going now, by the time our kids are that age, we will have created a program that they can be a part of.

so many small things

so many small things

We’ve called it Studio Next with the tagline autism+art+life. The basic idea is to provide a program for 15-25 year olds with autism, where they are supported to use the visual arts to explore their interests & passions while developing a friendship group, social and life skills. In a very short space we have generated a lot of interest. It’s exciting to see an idea develop into a reality so quickly. Of course, there will be a blog to document the progress there as well.

blogging it

So yeah…I’m pushing the envelope.

A Difficult Woman

Every now and then something happens that pivots your life and sends you off in a slightly different direction. At the time, you could never predict just how important it might be or how far away from your original trajectory you will be taken. Looking back though, you can see just how fundamentally things changed because of that turn of events. For me, it was the accidental making of a friend.

As young 20somethings, we were a couple of outsiders who quickly recognised a fellow traveller and formed a solid friendship. We sealed it by watching Jaws 3 & 4 on the big screen in one afternoon, a spot of fishing and a night of drinking our way through the various alcoholic beverages of our teenage years. Blue Lagoon anyone?

We spent most of our friendship living in far distant cities and towns. We never got to just drop over to each others place, to wear out our welcome. We did have a lot of holidays together though, so our story is full of beaches & road trips. And we worked together making music and films.

says it all

says it all

Whenever we could, we’d squeeze in a Yum Cha with a bottle of wine. Somehow this noisy, family  environment and combination of dumplings & alcohol would get us firing. We would cook up all kinds of plans and projects, make an enormous list then go off and accidentally spend way too much money on Christmas decorations or haircuts or frivolous frippery.

post yum cha

post yum cha

Our friendship has been an incredibly sustaining force in my life. It wasn’t always easy, but getting through the tough times and having that shared history over so many years builds something very strong between you. She was a ‘difficult woman’ and so was I but we only ever had one fight and that was about art/being an artist. In the end though, she always wanted more for me than I wanted for myself and for that…I am eternally thankful.

I had always looked forward to our ‘old age’ when we could really give the eccentricities free reign and nobody would care. But life is too short.

I’m lucky enough to have some other wonderful friendships with difficult women, but there is a space where you used to be. I don’t like it, but there you go.

Still such an influence on my life, this one’s for you on International Women’s Day 2013.

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http://www.aacta.org/the-awards/byron-kennedy-award.aspx

Toys and Stuff

I have just hauled a massive bag of toys into my bedroom (home of many random things). I’ve done this to reduce the madness with all the gifts that Christmas brings.
So we are down to a low-ish level of stuff without depriving the three boys of things to do and read and play with.
Because, in another corner of the room, not very far away is a massive great pile of presents. They are starting to tower over the tiny Christmas tree I’ve been using for years.
I’m not a big traditionalist when it comes to Christmas. We most certainly celebrate it and enjoy the time with friends and family but our Christmas is a little different to most.
When possible I try to help the kids have time with their families on or very close to Christmas Day. That might mean meeting in a park for a play on Christmas morning, or packing them up for a sleepover on Christmas Eve. In this way their families get to have this special time together.
It means something to me to be able to help make that happen. It also means that Christmas Day is a little different as I don’t always get to gather my little boys together to share this day. This year the two older boys will be off with their families and I won’t see them till Boxing Day. Other members of my family will not be around this year so me and the baby are heading down to Byron Bay to spend the day with friends who live right near the beach. We will be having a lovely time with swims, playing on the sand, some great summery food and wonderful friends.
Have a great Christmas everyone.

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Holy Sleep Deprivation Batman! I Need A Bat Cave

For a year (yes…a year), I’ve had a towel over my little boys window. I’ve been trying to work out what kind of window covering would  survive him, and him it.

Autism manifests itself in many ways but my 5 year old is a sensory seeker. He craves sensation. When he gives you a hug, he can’t help but go that one extra step and dig his fingers in for a pinch or a scratch. He loves to rip paper. He loves to make noise – a lot of noise! Especially when he wakes up. He loves all things string and carries a ribbon everywhere as his stim of choice.

His bedroom is kept fairly clear. It’s only a small room, so there’s a bed, a small chest of drawers, a rug, some beautiful photographic prints of him at about 6 months taken by Uncle Al (photographer/artist Alberto Sanchez Peinador) , some gorgeous animal art originals – all placed nice and high so he can’t reach them. He also has a pinboard which deserves a post of it’s own, but let’s just say everything on there is laminated, including the recent self portrait he took at school.

It’s kept clear because he is on a constant search and destroy mission. It’s a nice room but the window coverings have held me in limbo for quite a while. Curtains? No good, he’d pull the whole thing out from the wall. Blinds? Can’t have anything with a string and he’d also probably just yank the hell out of it till it broke. He’d dearly love to take a leap towards the ceiling fan – lucky white boys can’t jump! I give him a year.

Push has now come to shove. The sun is getting up earlier & earlier here in Australia as we move through our stunning spring towards summer. We’ve gone from him waking at 6am to 5am in just a couple of weeks. And it’s only going to get worse! I need a total blackout situation if I am not going to be woken ‘in the 4’s’ for the next 4 or 5 months. I need a bat cave!

I put the question out to a group of special needs mothers – please help! Within a couple of hours I had some really great ideas. Everything from hanging old blinds on the outside of the window to attaching foil to the outside of the glass with just a spray of water. But I decided to go for the velcro solution. The worst that can happen is he rips them down and wakes up early. Here’s how it all came together.

A nightmarish trip to the shops to buy the supplies. Not fun. My boy does not like Spotlight so spent most of the time on the floor screaming. I got a big headache…and the supplies. I did not care if the fabric design was perfect for the room. Just take my money and let us get out of here!

Auntie Elaine’s beast – they don’t make ’em like this anymore!

Out comes an ancient machine (inspiring another post, yet to be written about women’s machines!). My auntie gave this beast to me a couple of months ago. Unbelievably heavy! Fully operational, worked just like a new one! I haven’t used a sewing machine for about 20 years, but it was just like riding a bike, kinda. A few additional items were required from the sewing tin and the tool box.

my sewing tin

measure twice, cut once

Measured twice, cut once, zim, zam zoom…done!

the blue window

the red window

Brilliant! I’m very pleased with myself. My little guy celebrated with a jump on the bed.

Problem solved…fingers crossed. Further reports will be forthcoming.