Done

Day 19
We are home & we are done!
Yesterday we drove down from the mountains & arrived back in Hobart at night. We stayed in a cheap hotel motel but it was in a fantastic location, high up on a hill, overlooking the river. When we opened the curtains, the view of the moon shining on the water was incredible.
Today we were up at 5 to catch our planes home. They both managed the journey like professionals!
The kids are very happy to be home & have fallen into the deep sleep you only have when you are in your own bed.
This photo does the view no credit, but gives you an idea.

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Time Out

I needed a time out. I got one.

I spent last weekend at the Autism Mothers Time Out Camp. Such a good idea! Friday night until Sunday afternoon was child-free, laughter-full, lazy, indulgent fun. People – mothers, thrown together through circumstance and a common experience.

We didn’t spend too much time talking about autism, our kids, our families. We did things we just can’t normally do. We stayed up a bit late, we went to the wonderful Eumundi Markets, we had a few drinks, we slept in, went out to dinner, had massages, did our nails, read the paper, went back to bed after breakfast for another snooze and we went on a little boat cruise.

We were not in the lap of luxury. It was four to a room, summer camp style accommodation. But the luxury of sleeping through the night, of not having to get up and do things for our kids, our families or our work was beyond luxurious.

The laughter was the cream on top! Oh boy did we laugh! Such a beautiful release of energy to laugh and laugh and laugh till it hurt. I can totally blame (and thank) my roomies for all that fun and madness. Gotta get me some more of that on a regular basis!

 

did a lot of this

Our faces hurt from too much laughing

 

Pumicestone Passage

 

On the boat cruise

 

 

 

 

 

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.

 

Lullaby

Day 27: Autism Awareness Month (3 days to go people!)

Warning! There is an image of the Letterstick Band in this post. Members of this band are deceased and this image may cause some family and friends distress. They are remembered here with a lot of love.

Music has always been incredibly important to me and has been a constant theme in my life. From the very early days I could always lose myself in a great song, a beautiful melody and a back beat. I was always sharing music through my playing, singing and hanging out in dives all over the countryside.

As a baby, my boy was sung to, rocked in rhythm and danced around the lounge room. I wanted him to share my love of music, but like most things it didn’t quite pan out the way I thought it would. Instead, I had a highly sensory, sensitive child and music was just that little bit too much for him to take. He did enjoy short musical experiences where he could touch the instruments and feel the vibrations, but very happy to walk away from it as well.

Lately though things are changing. He is taking more notice of music – enjoying it more, but still very sensitive to certain pitches and tones. There are particular songs and themes that can send him into a screaming, crying, ears covered foetal position. There are others that captivate him and make him smile. I even caught him trying to dance (very rare) this morning.

So I’ve been collecting lullabies and gentle music that is soothing and acceptable to him and I thought I’d share a few of our favourites with you.

The Putumayo Dreamland compilations are wonderful. Putumayo are a NYC based label who specialise in world music compilations. They have a great catalogue of quality music for kids from all over the world.

My favorites from this series are Acoustic Dreamland, Celtic Dreamland and the original Dreamland.

Quite a few years ago now I helped them in sourcing an appropriate Australian Indigenous track for their first Dreamland album. The track is from a group who is ‘family’ to me. They no longer play after losing band members to a road accident. I love this song, sung in Barrarra language of the An Barra clan from north west Arnhem land.

‘Yirrana” (sunset) by Letterstick Band

Here’s a beautiful cover of James Taylor’s ‘You Can Close Your Eyes’ by William Fitzsimmons from the Acoustic Dreamland album

There’s some amazing artists doing beautiful albums for children. Justine Clarke is an Australian actress who is making great albums and dvds that kids just love. Here she is singing ‘Creatures of the Rain and Sun’

And of course there’s the artists who just make luscious music that creates a relaxing environment for our kids. Here’s Lior with ‘Secret Little Garden’ (check out  his fabulous website)

And lastly (because I don’t want to use up all my available space in one post) here is a song from an Australian kids show Giggle & Hoot which is screened around bedtime each night. L hates the voices of the characters, but the songs are pretty good and this one in particular is a winner. Sweet Dreams everyone…

You Are Getting Veeeerrrrry Sleepy

Day 19: Autism Awareness Blogathon

A few years ago I watched a fascinating documentary all about sleep. One of the  stories it told was of a person whose brain switched off the sleep button and never turned it on again. There was nothing this guy could do to get to sleep. He went to hospital where they tired all kinds of things to help him. In the end he became psychotic, his body started shutting down and (take a breath) he died. From getting no sleep.

Many people on the spectrum have sleep issues. It’s exhausting for them and exhausting caring for them as when they are awake, you are too. Melatonin works for some people, but not for others. Massage, oils, warm baths, warm drinks, blockout curtains, regular sleep/wake patterns, white noise machines, you name it, we will try it if it means we might get some more sleep.

image credit: bepositivemom.com

Today a good friend and autism mum posted the following message on our trusty friend facebook.

Well I’ve been a mum for 5.5 yrs now. Sleep deprivation is all too common for parents that have children with disabilities. It’s not like newborn broken sleep, it’s not like teething broken sleep or bad dream waking during the night…. it’s just on a WHOLE different level. It doesn’t go away, or stop all of a sudden because your toddler has stopped teething or baby has stopped night feeds or are old enough to go out have a big day playing with friends and getting worn out. It’s the sort of thing only a parent with a child with a disability that has some sort of sleep disorder could even comprehend.

I used to tell myself when my 2 were babies ‘this waking at night.. its only a moment in time, it will pass, they will grow up and out of it’ and that mind set helped me so much. But so many parents who are in a situation similar to mine and harder, don’t know if it will ever change. Learning to ACCEPT living on little sleep is a must so you don’t kill anyone trying to find a way to ‘get sleep’.

I’m tired, god am I tired…but I can never help myself thinking about parents who have been doing this longer than 5.5yrs. What about the parents out there who have children in their 20’s+ who live with them and still need 24/7 care, and they get up every night for 20+ yrs to help their children to calm, feed, toilet, change adult nappy or fix tubing or to do what ever is needed. I have so much admiration for these parents. It’s a long, hard tiring road.

Will I be one of these parents? I don’t know but it’s the love for a child and thinking of those parents who have been doing this longer than me that helps me get my ass out of bed at night after night after night. I have a few friends that are in the same boat but it is so hard to explain to people what it’s like so I’m just going to put it out there for everyone!

I wish!

Thanks for that tiny little slice of your life Candice. I used to hate that saying ‘whatever doesn’t kill you makes you stronger’ but that was before I became an autism mum.

Now here’s an adults bedtime book read by Australian actress Noni Hazlehurst to cheer us all up (warning – language! don’t press play if swearing offends).

image credit: doubleday

The Art & Science of Efficiency

Last Friday, with the boys distributed around to friends and family, I booked in nice and early at 6am. I did the requisite interview and answered all questions duly. Then I was taken in to get changed and shown a lounge where I could sit with the other patrons who were also waiting and together we quietly watched a bit of morning tv. I even fell asleep.

They called my name and I moved through to the next area where a few more details were checked and before long, I was asked to come through to a small room. I joked with the staff there about enjoying my time at the day spa while they went about their work. I said that I expected to wake up with nothing less than cucumbers on my eyes. Told them how much I was looking forward to having a very relaxing sleep during the day, something that very rarely happens in my world.

I woke up 3 hours later. No drama, just minus a conveniently dispensable organ in my body. I spent the night on the ward. Surgeons gave me the OK to go home at about 9am. Four tiny cuts and a bit sore, I hardly need to use painkillers. The miracles of modern medicine.

The Octogenarians and the Five Year Old

My big boy is now five years old. His birthday comes hot on the heels of New Years, so it’s not an ideal time with most of us in holiday mode, lots of people away and everyone recovering from Christmas madness.

But 5 is a pretty significant number, so…in a moment of mothering madness, I decided to have a birthday party. The invite was via text, about 4 days prior. The search for a birthday cake recipe began and the to do list got longer and longer.

The idea was to have a simple backyard party. Nothing too big, just a few friends and the kids having fun running around playing with water. As usual though, I was a little ambitious in what I thought I could get done in the time available and given that I have three little boys to care for.

Enter the Octogenarians – my dad and his brother/my uncle. I had asked dad if he could help me organise a few things that I couldn’t do alone and he roped in his brother. They moved and stacked timber, they mowed, they helped to re-arrange my diabolical mess under the house to make space for little people to ride the numerous bikes, trikes and various other  miniature modes of transport I seem to have miraculously acquired. They even hung a swing that’s been sitting around for the last 12 months waiting to get hung.

L can be a little difficult to buy presents for, so everyone was asking for guidance. In a moment of clarity (rare these days) I suggested that a great present would be a load of fresh sand for the sand pit. So that turned up as well thanks to Abbi & Andrew.

As the light started to fade on the day, we retired for cups of tea and pizza. Job done.

For them.

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I continued into the night once I had got the kids to sleep, baking the birthday cake, preparing the party bags and getting stuff organised for the big day.

The next morning we were up early as usual (around 5) and as this was the actual birthday, I had a few little presents for L to open, plus I had to get downstairs to put together the ride on four wheeler and get the battery charged – as this was his main present.

There was the blow up pool to get blown up, the tee pee to erect, the squirting circle thingy to be hooked up to the garden hose, etc, etc, etc. Before I knew it, guests started arriving and it was on for young and old. I did not stop. I did not take a single photo.

It all went well, with a lot of help from everyone. L had lots of fun and didn’t do anything too outrageous unless you count him stripping off and running around naked for a bit. (that’s actually pretty normal for him).

Everyone was gone by about 7pm and the place was not completely trashed, but I was. So when I got the last child to bed and asleep, I crawled into my bed, deliriously tired at about 8pm and went to sleep. When the baby woke at about 1pm, I woke up and felt totally refreshed having already gotten more sleep than I would normally get in a night. The joy of knowing I could go back to bed and get even more sleep was so overwhelming, I almost danced back to bed. I swore I would go to bed early more often.

Haven’t made it to bed before 11 since then. Oh well.

So…five whole years. Amazing.