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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Nanny & Poppy

Photo a day in April for autism acceptance
(I know, it’s not a photo…but I’m quickly writing this from the ER – here with our little bubba who is not well at all…so that’s my excuse!)
Once a month my beautiful little 6yo asd boy heads off for an overnight visit with his grandparents – nanny & poppy.
This routine has been going on for a couple of years now. L always enjoys this time – he gets to play with his cousins, spend time with his uncle, aunt & the whole extended family. He also gets to see his mum. But this is about grandparents.
How wonderful it is for him to have these beautiful, loving relationships with his nanny & poppy. That connection to family will always be there for him.
Over the years we have been able to develop a good, trusting relationship and I value that enormously.
Also, it means I get a night off. Kind of – still usually have at least one of the boys with me – but it FEELS like a night off, and that counts. Thank you nanny & poppy!

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The Gardens

Photo a day for autism acceptance in April

Today we discovered a really wonderful playground. The botanic gardens are home to most of Darwin’s oldest trees. Darwin was all but leveled on Christmas Day 1974 when cyclone Tracy hit the town dead on.

Almost 40 years later and the gardens are quite beautiful. They are tucked in between the beach and the city, green, quiet, lush and cool in the overbearing humidity of the tropics. The playground they have created in these gardens are wonderful for kids who love to roam and climb. It’s semi-fenced and rambles through a few different garden style rooms.

The boys really enjoyed climbing up to the top of this three level structure. Getting down was not quite so much fun! There was also a great area where there were lots of rocks and stones strewn around various paths and enormous stands of bamboo. We went hunting for Macca Pacca.

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not a leaf was left on a tree, and not many trees were left either

not a leaf was left on a tree, and not many trees were left either

 

Snapshots of my Week

I’m back. I was so happy that I made it to the end of the blogathon. The following week I went through major withdrawals then I felt a bit depressed and had no energy for anything. I’ve just come through a hellish long weekend where L’s behaviours seemed to soar into the stratosphere and now, finally…I have rallied.

So here’s a snap shot of some of the things that have been going on in my world while I was away.

Baby J

I had to run from one room to another to intercept an interaction between my 10 month old boy J and my 5 yo L. I went running down the hallway to find the baby crawling towards me crying. In each hand he was clutching a $50 note. He had been rifling through my wallet (not somewhere you would normally find 2 fifties, but it was a long weekend and I had a babysitter coming!).

J is getting more and more adventurous and as a result is having a few interesting interactions with the other boys. This kid is built like a steam roller! He is already heavier than N (who is 2) and it won’t be long before he starts paying L back for all the pushes away he gets.

Meanwhile – he’s climbing and showing no fear whatsoever. I turn my back and he’s….

Mr N

There was nothing I could do to prepare him for what he was about to experience. All I could do was make sure he’d had a good sleep, something to eat and drink. I left the other two with the babysitter and we headed off on the bus to our performing arts centre.

There were a LOT of very excited kids there. There was an impressive sized area cordoned off exclusively for pram parking. There were mums and dads shelling out the big bucks at the merch stand. We made out way in and found our seats. After a bit of waiting the music got louder and before we could say ‘hot potato’ The Wiggles were right there in front of us. N was suitably impressed. He enjoyed himself, he clapped, he danced, he pointed his fingers and did the twist and couldn’t believe his eyes as the zealous guys in skivvys made their way into the audience and walked right past us!

It was exhausting to say the least and not just for me. Little N slept very well that night and dreamt of Captain Feathersword and his friendly pirate crew.

The Big Red Car – yay!!!

Wiggles sing Twinke Twinkle Little Star

My Big Boy L

I love him to bits but seriously, he took me to the edge last weekend. He’s escalating in all his obsessive behaviours – opening a shutting doors a million times a day, turning the kettle on whenever possible, playing with the stove, with all the hot water taps and of course the ribbon. He’s climbing the walls, literally. He was in his bedroom for about 2 minutes and when I went to check he was standing on a high cupboard about to take a swinging jump to hang onto the ceiling fan. He was stripping off all clothes countless times a day. He ignored every request, laughing as he ran in the opposite direction at every opportunity. And the screaming, oh please make me temporarily deaf so I don’t have to hear any more screaming.

I did everything I could to exhaust him and get him to a place where he could just relax and have some fun. We went to the park, we went to an indoor play centre so he could do lots of climbing, we went on a little bush walk and went to a wildlife park, we played, we mowed the grass (which he loves), we ran and jumped on the trampoline. I was worn out, but he could have gone another 20 rounds.

We’re off to the doctor to get some advice on the best way forward.

Where is he?

The invisible kid

Me

Next week I’m heading off for four days of child free fun. One of my younger brothers is turning 50, so it’s the gathering of the clan for a shindig in Darwin. I intend to sleep for as many hours as possible, to have a few drinks and see if I can shuffle out of this mood I’m in. Meanwhile, here’s a couple of photos from the early years and one of the super moon over my hometown. May it bring me super powers.

Family & Friends, Townsville 1963

trashing Dad’s work car

Brisbane Super Moon 2012
image credit: themarysue.com

Similar But Different

Day 29: Autism Awareness Blogathon (the penultimate post)

We had a lovely morning in the park today. It was the annual AEIOU fundraiser Paddle For Kids. Even though L no longer attends AEIOU, they still consider us a part of the family.

We needed to get out, after a Saturday of very rainy weather and having to stay indoors, the kids were restless and itching to get outside. It was still quite damp and muddy out and no guarantee it wouldn’t rain on us, but we headed out regardless.

The Paddle for Kids involves some racing on the river by sponsored teams from all the different early intervention centres in the Brisbane region. Our team put on a great show dressing up and ultimately coming last in the final.

The boys had a great time – jumping castle, sausages, cupcakes, running around in the mud and lots of friends who were so happy to see us – especially L’s teachers, learning facilitators and therapists. It was lovely to see and catch up with some of the other families.  The fresh air and running around did us all good.

I had my hands full and despite pulling the camera out several times to get some photos, I didn’t get a single one – hopeless! I will update this post with some photos once they come through from other sources.

While I was standing around the jumping castle waiting for the kids an older woman came up beside me and asked if I had a child with autism. ‘Yes, I do, he’s in there having fun jumping around.’ The woman turned to her left and introduced me to her daughter. I turned around to say hello properly. The woman told me that her daughter also had autism and was now 42 years old.

We had a lovely chat about names and about music as she has a special interest in musicals & films. She was able to reel off a few musicals and films that had characters with my name. Her mother said ‘It doesn’t get easier’. I laughed and said ‘Don’t tell me that!’ I really felt for her though. She had raised her daughter in the years when there were very limited services for the autism community – certainly no fun days in the park where we can gather and celebrate our kids.

A lifetime of togetherness. It’s hard to really imagine. You just have to live it to know it. Then tonight I got a message from another autism mum. Her son is in his 20’s and she has told me many times ‘It gets better’. I chose to believe my friend, but in no way dismiss the woman’s statement this morning. My friend and her son are about to head off on an international holiday – what an adventure!

We are generations of mothers, dealing with similar but different issues, joys and challenges.

Disclaimer – I have no alliance with The Autism File and I’m not really sure what ‘we will win’, also not really a big fan of big soppy anthems, but it fit, so here it is.  

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…

The Mean vs Your Kid

Day 20: Autism Awareness Blogathon

It would break my heart to see my child bullied. He’s little, light framed, vulnerable and trusting. Why would anyone want to hurt him? Did you know that research (Little 2002) showed that 90% of children with ASD are bullied? What a statistic!

Today I went to a dynamite one day conference which featured Prof. Tony Attwood & Dr Michelle Garnett from Minds and Hearts,  a clinic specialising in services to the autism community. Bullying wasn’t the only topic covered today but it is the topic I want to write about tonight.

Coincidentally, the other day I read an incredible gut-wrenching post by one of my fabulous bloggy pals about her experience of bullying in high school. I hope you go over to ProfMomEsq to read it. She nailed it when she called the whole experience The Mean.

We know our kids are easy targets and if your child is in a mainstream educational environment, then they might as well have a target pinned on the back of their shirt and ‘victim’ tattooed across their forehead.

When bullying enters the picture, all the years of good work we have done in integrating our kids dissolves away as they become even more socially isolated, depressed, unable to learn because of high levels of anxiety and lashing out aggressively when their limits are reached, often resulting in suspension or other penalties.

So we need to be vigilant for our children, but not vigilantes. We need to keep an eye out for the signs of bullying:

  • lost or damaged possessions
  • torn or dirty clothing
  • bruising or other injuries
  • heightened anxiety
  • interrupted sleep
  • school avoidance
  • unusual explosive responses
  • paranoia
  • changing of special interest areas to the protective (guns, weapons, violence & retribution)
  • mimicking bullying at home with siblings

Sadly, bullying is ingrained within our culture. It is not restricted to the school yard. Bullying rears it’s ugly head in the workplace, in our social lives and even in our own homes.

It’s incredibly depressing just thinking about it. What do we do? How can we change this situation? We’re already fighters, survivors, warriors. We haven’t sunk into the muddy trenches yet, even though sometimes we just allow ourselves to feel the weight of the battle wash over us. So yes, this is another fight we must get through. We must!

What a relief it was to get to the section of the presentation today when they finally gave us some good news. There is something we can do. There are strategies that can be introduced to reduce bullying.

Ideally, the whole school needs to get on board with a zero tolerance for bullying in policy AND it’s practical application. Staff education, consistent application and an agreed concept of justice and appropriate punishment are all vital ingredients. There are good books, workbooks and other resources available to assist with that including:

  • Gray’s Guide to Bullying, Carol Gray
  • No Fishing Allowed, Carol Gray, Judy Williams
  • Perfect Targets, Rebekah Heinrichs
  • Being Bullied, Nick Dubin

You can create a Map of Safe and Vulnerable Places for your school. This identifies the locations where bullying is most likely to occur – areas where there is limited or no supervision like hallways and bathrooms. It also shows the safe havens for our kids and this is where they need to be in their breaks. Places where there are other kids (witnesses!) and that are supervised.

Most importantly, all children in the school need to become aware that they have a responsibility. If they see bullying and don’t do anything about it – then what does that say? The ‘silent majority’ of kids do not bully or condone bullying, but they need to do more than that. Why? Because what made a child one of the 10% who didn’t get bullied? Friends.

Buddy systems, where a group of 3 – 4 kids who are willing to come on board, learn about autism, learn about your child in particular and be there to help out in a range of situations: a social buddy, an academic buddy, a sports buddy. Promote good examples of where someone has stood up to a bully as an act of heroism. Create the opportunities for disclosure and value it when it happens.

You also need to help your child learn how to recognise and respond to bullying. Ignoring the situation will only make it worse, so help them by practicing role plays where they have a script that is assertive, constructive and true to them. Practice self calming techniques. Do not let them believe that they are the abusive words used by bullies.

Create a Grievance Book where issues or incidences are recorded and copies provided to the Principal, the Teacher and also kept at home.

Create a Boasting Book to record your child’s successes in dealing with this issue.

Last but not least, involve them in a sport or marshal art where they are able to learn about defending themselves (but not attacking others).

Well, I don’t know about you, but I’m emotionally exhausted after that!!

Note: I’ve used some of the information from the presentation today in this post – so acknowledgement to the wonderful work of Attwood & Garnett. 

Sensational

Day 18: Autism Awareness Blogathon

Today I am co-blogging with That Cynking Feeling. We got to chatting last week and found that we are both doing a blogging marathon for autism this month. Se we decided to choose a topic and both of us are writing about it from our different perspectives. Here is hers (and you’ve got to love a title like this): Smells Like Toddler Spirit and here is mine:

‘Time for dinner! Come and sit at the table’.  I am ignored.

I walk over to L who is sitting playing with his ribbon and occasionally giving a sideways glance at the television. I turn the tv off.  I get down to his level, eye to eye, make sure I have his attention and say ‘dinner time, tv is finished, come and sit at the table now please’.

L looks at me and smiles but makes no move towards the table. I go over to the kitchen, get his bowl of dinner and take it to him. I put the bowl under his nose. He glances at it momentarily, but gives the food a good hearty sniff. Suddenly, he is alert. I whisk the bowl back to the table and repeat ‘time for dinner L, come and sit at the table’. He looks at me and smiles, looks at where the bowl is and walks over to his place at the table. He sits down, picks up his spoon and starts to eat his meal. With every spoonful he becomes more enthusiastic, more aware that he is hungry. He eats the entire bowl of food.

‘More dinner or finished?’ ‘More dinner’ another bowl of curry and rice goes the way of the first. ‘More dinner or finished?’ ‘Finished Mum’, ‘OK, bowl in the sink please’. He checks if he might be able to get away with not putting his bowl in the sink, but realising that I am 100% attending to his every move, he picks up his bowl and drops it into the sink.

‘Thank you darling’ He goes back to the ribbon which stayed in his hand through the entire meal.

It’s a routine we have worked on for a couple of years now. He eats about 80% of the meals I make for him. This time last year it was about 50%. He is not what I would call a picky eater like some people on the spectrum are, but he certainly has a distinctive set of preferences.

For my boy, his food must be soft and wet – not hard and crunchy. No biting or heavy chewing. He won’t eat bread, biscuits, crackers, pies, pastry etc. He WILL eat, a ragingly hot curry, casseroles, sausages, breakfast cereal, baked beans, pancakes, rice pudding & cake. He is what is called a sensory seeker. He seeks sensation. His ribbon and various other stimming activities give him the sensory feedback that help him to be calm and happy.

In my many years B.C. (before children) I had never heard about sensory processing. I thought there were 5 senses – everybody said so and I believed them. Turns out there are 7 and I wouldn’t be surprised if in a few more years, they decided there were more.

In case you were wondering, the two mystery senses are the proprioceptive and the vestibular. Proprioception is all about knowing/feeling what our body parts, muscles and joints are doing and where they are. The vestibular sense is all about where our bodies are in space, about gravity, balance and movement.

 

 

feeling the vestibular system kick in

Sensory processing is all about how the brain processes the information we receive from our environment. You might remember me describing L’s Cortical Vision Impairment in the I Knew Better post. So I knew he had visual processing issues, but it turns out that all of his sensory processing is impacted.

image credit: Family Circle 1959

L needs to smell his meal before he is able to decide if he will eat it or not, or if he is even hungry. The ‘we eat with our eyes’ saying does not apply to him.  Most of the time he does not even realise that he is hungry or thirsty. Luckily he will usually eat a good breakfast, but for a while last year he would then go all day without eating or drinking anything except some bathwater. Great!

I was able to get some support from the Feeding Clinic at our local children’s hospital. There you get to meet with a Speechie, an OT and a Dietician and they help you to put a plan together to widen the menu, expand the sensory diet and help you with putting some rules in around food and eating.

The rules are pretty simple:

  • only serve one meal – don’t go making the old favorites if the meal you have served is refused
  • keep offering new foods, but only one at a time – you need to present food at least 20 times
  • stay upbeat about food/dinner/eating – try not to get emotional, desperate or angry
  • be as creative as you can by moving incrementally towards a new food – if they like chicken curry, try beef curry or indian or thai

For any one who is interested, the book ‘The Brain That Changes Itself’ by Norman Doidge is a remarkable adventure into the world neuroplasticity and the now very famous ‘Out of Sync Child Has Fun’ by Carol Stock Kranowitz is an incredible resource for parents.