D Town

We are in D Town. I somehow managed to get my three little guys bundled up, onto a 4 hour flight to the northernmost city in Australia, Darwin. We survived the flight fairly well which in itself, is a minor miracle. I was a bit concerned about the levels of anxiety and noisemaking my little 6yo asd boy would experience – but he was brilliant!

I was prepared for apologies to the rows of people in front, behind, beside etc. but instead, I was warmly reassured by several passengers that the boys were doing incredibly well and so was I! Numerous people offered their assistance, especially when it came to disembarking. It’s so reassuring to experience that level of kindness and support from strangers.

kindness od strangers

Being in Darwin always stirs something in me. Each and every member of my immediate family have lived here on and off since 1980. Two of my brothers and their families continue to live here and I have lived here for several years at a time as well. So there is a deep sense of family history, many memories and some wonderful friendships that continue to this day. My little boys are really enjoying connecting with my family up here.

We are here on the tail end of the wet season. It is still very rainy and humid and overcast. Swampy. This is a frontier town, far away from the rest of Australia and more connect in someways to places like Timor, Papua New Guinea and Indonesia who are physically closer. It is the final destination for lots of people who don’t fit in to the mainstream. More than a few criminals on the run make their way up here, plus there are always a few missionaries on the job too. Plenty of work up here for them!

warnings for tourists

warnings for tourists

I took the boys on a little scenic tour on our first day here. It turned out to be a tour of the diggers and heavy machinery (N was extremely pleased) and mosquito infested playgrounds, with lots of jumping in muddy puddles and entire changes of clothes required for each child. But as we drove through the inner suburb of Larrakia a few old memories were triggered.

The very first time I came to Darwin was in 1981 when a friend and I hitched across from the east coast on an epic three day road trip. No real plans, broke, no job or anything connecting me to anywhere, I arrived on my parents newly acquired doorstep.

I got a job pretty quickly and became involved in setting up the first group home for children with complex disabilities in Darwin, Bunyip House. Part of my job was to go around to the various facilities to collect these little kids, whose ages ranged from 3-15 and bring them to their new home.

These kids were all Indigenous and unable to be cared for by their families in their home communities (small townships with extremely limited facilities). So they ended up in Darwin in hospital beds and old age homes. Moving into this home was a huge step forward for them, but you couldn’t help but feel bad for the set of circumstances that had transpired for them to be in these horrible places.

For these kids, who are now in their 30’s and 40’s, life took a dramatic turn for the better. Not only were they participating within their communities: going on family visits, picnics, walks, playgroups etc. but they also had better access to medical and educational supports. And yes, it does seem crazy that a child would have better access to medical support out of a hospital than in, but this is where advocacy and some genuine loving care makes a massive difference.

I worked there for about a year and during this time was able to help families re-connect with their kids in this far more child-focused environment. I was able to take some of the kids home for short trips and got to go to some amazing places including Melville, Goulburn and Croker Islands. Families were also able to come and spend time with their kids when they were in town.

Arnhem Land

Arnhem Land

It was while I was in this job that I had my first experience with autism. As well as being the permanent home for 6 children, we also provided respite care – virtually unheard of back then! On a couple of occasions we cared for a girl who was about 12, non-verbal and with many challenging & aggressive behaviors. For her parents, it was scary and hard to leave her with us, they feared for her safety (she was a runner) and for that of the other kids. Looking back now, I can only imagine how difficult it must have been for them. It must have also been such a relief to have those days of rest.

Although those who know me may see it differently, I could never have predicted that I would be here, so many years later with a little spectrummy guy of my own. Life can certainly be circular at times.

Coming Soon…
Crocodiles

This one was caught a couple of weeks ago. 4.8 metres

This one was caught a couple of weeks ago. 4.8 metres

Maningrida

see you mob soon!

see you mob soon!

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Water Mum!

My oldest boy L who is 6 and has autism, has always liked water. A bath was always a good way to calm him down, get him engaged in activities, to connect and have fun.

happy boy in water

happy boy in water

His journey towards language and communication has been a long and winding road. He is not visually motivated (he has a cortical vision impairment) so Makaton (a simple sign language), PECS (picture exchange communication system) and even the iPad (needs no description!) have not been at all interesting to him. He can not interpret a drawing or visual representation of an action or concept.

For a long time he babbled away making speech-like sounds as a baby does. I used to wish for an interpreter. I’m pretty switched on to language development, but there just did not seem to be any meaning or intention associated with the sounds he was making. Still… I encouraged, I read to him, I researched, I did Hanen training, I talked and talked to him, I played endless games of peekaboo and ready, set, …. and always left plenty of time for him to process and respond.

Slowly, slowly he started to use a few words here and there. Snippets of songs would emerge and then fade away, leaving me wondering if he ever really sang them. About a year ago I wrote about a moment we had where I felt like we’d actually had a very brief, but oh so precious first conversation.

The next twelve months were like living in an echo chamber. Echolalia is something many autistic people have as a part of their speech pattern or language development process. Simply put, it is echoing back what has been said. So if you ask a question: do you want an apple? the response will be ‘do you want an apple?’. There are many permutations of this form of communication. Some people can recite the entire dialogue from a movie, but not my boy! Oh no! He would find one word or phrase and stick to it with a passion.

Him: What? Me: What? Him: What? etc.

Him: What? Me: What? Him: What? etc.

His two main words? Mummy (I thank you for that my beautiful boy) and toilet. Yes…toilet was a word that was repeated endlessly throughout the day. Some days it was funny. Other days I felt like I was going crazy. But I was always, always grateful for the fact that he was actually using language. A somewhat limited repertoire, but using actual words.

He’s had an incredible spurt of language development in the last couple of months. It’s gone hand in hand with some absolutely horrific, nerve jarring screaming, screeching and general stimmy noisemaking (see my Yoko Ono post). But he just keeps coming out with new words, new phrases, labels, requests and yes…actual sentences.

Language UP, Frustrations DOWN.

He still reverts to old habits, but when he is reminded that using words is an option, he will give it a go.

So today, when we were driving along this morning, we crossed over one of the main connecting bridges in our beautiful river city and from the back seat I hear ‘Water,  mum’. Me: YES! Water!! Can you see the water? Good boy!!! You are using your words! and lots of effusive praise etc.

Water, Mum!

Water, Mum!

This afternoon, crossing back over the river (different bridge) ‘Water, mum, water!’ Me: WOW! YES! there’s the water AGAIN! blah, blah, blah. Then we crossed over a smaller creek which leads to the river: ‘Water, mum!’ (I think you know what I said).

It’s a real milestone. A genuine, corner turning milestone for this little guy who has faced so many challenges in life already. I’m so very, very excited for him.

Also, and this is big news too, he can now officially jump. YES!

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