Picture this…….. You start your journey home from a long and eventful day at work, fight with the Friday night traffic, make a few last minute phone calls to clients, and start to drift off into weekend mode - looking forward to winding down, de - stressing and enjoying time with your loving family (as well as catching up with some sport via the television).

Sounds great doesn’t it? - nothing abnormal there. At this point I should tell you that I am the proud dad of two beautiful kids, Anna who is nearly 3 and Jack who is nearly 6 and recently been diagnosed with Asperger’s.  I should also tell you that I am married to the modern day version of wonder woman, who organises and plans every aspect of the kids (and mine!) lives so that a resemblance of order is maintained every day.

Most of you (especially the ladies) are probably thinking - so what, this doesn’t sound any different to thousands of other homes, and you would be right…….. except this is no ordinary weekend! As I pull into the driveway, I notice that my wife’s car door is open, I walk over to shut it and notice the suitcase, hairdryer, makeup bag and other miscellaneous women’s stuff. Then it hits me (about the same time as my naked 5 year old is jumping into my arms to welcome me home) - this is the weekend I promised to look after the kids, and send my wife on a well deserved break! 

I start to panic….. can I really do this??….. who can I call in as back up??….. what are the emergency services numbers??….. and most importantly - how am I going to get to watch the game and what are we going to eat!?…..

To be continued ……….

In a previous post, Jack’s feet and socks were the topic of discussion.  In this post his feet once again are the topic but this time from a different angle.

Jack, like many children with autism, has regular ‘meltdowns’ usually in response to something, or a variety of things, in his environment.  We can often sense a ‘meltdown’ looming, with Jack becoming more and more agitated.  His hyperactivity increases and he has a tendency to go totally within himself (you can talk to him but he won’t hear you or make eye contact) just before he boils over.  Jack’s meltdowns usually consist of him screaming, moaning, swearing, kicking, hitting, head butting and banging, rolling around on the ground and his body overheating.

As much as we try to avoid a meltdown occuring by redirecting him and removing or altering ’stimulants’ as best we can, there is often little we can do once he reaches a certain point within himself.  We can literally see his eyes roll back in his head sometimes and his whole body seems to take over the mind.  At this point we find it is best to ‘ride out the storm’, simply letting him move through the tantrum and aggravation.  His body eventually reaches the point of exhaustion and he becomes calm (but very tired).

Through talking with Jack during the period of calm after a ‘meltdown’ we have discovered the final moments of the tantrum can be quite scary for him.  He reports being unable to breathe properly, as well as the feeling of his body burning.  We used to hold him quite tightly during these tantrums, hugging his body to us, in order to protect ourselves from lashing arms and legs and to protect him from hurting himself against walls and furniture - damage control.  However this seemed to only exascerbate his feelings of not being able to breathe.

One day, purely in an effort to protect myself from being kicked, I (Elissa) grabbed his feet and held them tight.  He complained and continued to try and kick for a few moments but then I started to sing to him and his body almost melted into total peacefulness.  He lay motionless (though still twirling his hands every now and again) for about 10 minutes, with me holding his feet and repeatedly singing ‘Jack’s song’ (more about the song another time).

From then on ‘feet holding’ has become a regular request of Jack’s.  It doesn’t always work at the time of a meltdown, but it is very comforting to him sometimes when things become too overwhelming, or when he is having trouble sleeping.  Someone once told us that by holding his feet we are helping him to feel more grounded.  We don’t know if that is what it is, or if it’s simply the constant firm pressure on an area of his body where he usually has problematic sensory issues.  But regardless of why, feet holding is something that can give Jack a feeling of calm, and that’s good news for us.

Today’s post is simply a reflection - it is relevant for all parents, but today it is for those who are touched by a child with autism: 

Your children are not your children.

They are the sons and the daughters of life’s longing for itself.

They come through you but not from you.

And though they are with you, yet they belong not to you.

You may give them your love, but not your thoughts.

For they have their own thoughts.

You may house their bodies but not their souls.

For their souls dwell in the house of tomorrow, which you cannot visit, not even in your dreams.

You may strive to be like them, but seek not to make them like you.

You are the bows from which your children as living arrows are sent forth.

Let your bending in the archer’s hand be for gladness.

- Kahlil Gibran, The Prophet

Elissa usually posts on our blog, but today it’s ‘Dad’s’ view! 

“Dad, is it a stay at home day today?”

And so the day begins…

Yes, this is what I wake up to most mornings.  The same question, come rain, hail or shine - and the reason why Jack asks?  Well, regardless of my answer to this question it is always followed by the next:

“Dad, can you play Playstation with me?”

I live with a Playstation junkie.

For a long time Elissa refused to have any sort of computer / video games in the house.  She was a bit of a ‘purest’ so to speak, and believed that kids should be outside building cubby houses and digging in the sandpit.  Well, she still believes in her ideal, but when her parents presented Jack with the Playstation she finally caved in and agreed to allow it in to the house.

Since then, Jack hasn’t looked back (and Elissa even admits that at times it is her saviour in that it gives her half an hour of total peace and quiet when she needs it due to the fact that when Jack sits in front of it he is totally consumed by it).  He only has 3 games, but he knows them like the back of his hand, and in typical Aspie style, plays them over and over and over and over…….. well, you get the picture.

Unfortunately though, in the beginning, when Playstation was new to the house, I kind of ‘made a rod for my back’ so to speak.  Jack would become frustrated with the games because he couldn’t play them perfectly (yes, those Aspie traits again) and so I would sit with him in an effort to calm him down and help him work through the steps.  The problem now is that Jack associates the Playstation with ‘Dad sitting next to me’.  And that doesn’t neccesarily mean playing, but more commentating and ‘fixing’ his mistakes.

I should mention that when Jack asks the infamous ’Playstation’ question he asks it in multiples of about a dozen at a time.  No matter the reason I give him for not being able to sit with him at that moment I always then get the response “Oh, okay, but can you play Playstation with me?”  In fact, I can even be in the middle of a heated discussion with him about the reasons why he shouldn’t pull his sisters dolls body parts off and he will still manage to find a way to squeeze in the question.  One day I had the banter non stop for about 2 hours straight.  I finally threatened to throw the Playstation in the charity bin, and so he stopped asking, for about an hour - before starting up again!

Jack recently had a weekend away staying with his grandparents (yes, the ones that gave him the Playstation), taking the Playstation with him and spending the entire time in front of it.  Whilst at his grandparents he also had his Uncle Mike with him who is a fellow Playstation addict, and so the 2 of them battled over top scores, and together plotted their way through the more difficult parts of the games.  I’m planning on inviting Uncle Mike to come and stay for a few days to take over my role in the Playstation arena, and hopefully reprogram Jack’s morning wake up call to exclude the “Dad, can you play Playstation with me?”

Until then, I’ll keep rolling over and putting my head under the pillow…..

But that’s life with a Playstation Junkie!

Steve

Questions… 

On a daily basis, much of Jack’s conversation is filled with questions - but they are never general questions,  they are always focussed and usually on his ‘current’ specific topic of interest.

Recently, water and how it exists and progresses it’s way through our world (in both it’s natural and man made environments) has been a favourite topic of his.

“How does water push out of the pipes Mum?”

“How does the water get to the pipes Mum?”

“What happens to the water that goes down the drain in the street Mum?”

“How do they fix the water Mum?”

“Where does the rain come from Mum?”

“Why does the rain come Mum?”

“Why does the water disappear off the ground Mum?”

“But why?”

“But how?”

“But why?”

After a few weeks of answering questions about drainage, filtration, and anything related to the clear liquid we rely on to survive, I really thought I had the water thing covered.  I thought I had explained everything there was to know.  Then today he asked:

“Why do we put water on the plants Mum?”

Of course, I’d forgotten the plants!

I think the water topic will be here for a while longer.  I’ll just have to keep doing what I do, answering his questions as best I can, and wondering just how his mind works as he ‘ponders life’.

Jack’s most favourite food would have to be chocolate cake.  When we made the decision to change his diet the very first thing that we had to find substitute ingredients for was chocolate cake - that, and ice cream (which comes a pretty close second on his list of treats).  Luckily with a bit of effort we were able to find suitable ingredients, and so every now and again we have a ‘bake off’ and spend a day preparing not only chocolate cake and sorbet (our new version of ice cream) but a whole range of lovely treats for the entire family to enjoy.

After a long week of miserable weather and the kids not being able to get outside to play much, we made the decision that today was the day for baking.  And Jack’s choice of treats… of course, chocolate cake and sorbet.  The kids were up early in anticipation, gobbled their breakfast down quickly, and we soon had ourselves set up with everything that we needed for our bake off.

As usual, what starts with enthusiasm often wanes within around an hour of beginning as the kids tire of mixing and measuring - instead just wanting immediate results.  So by mid morning I was surrounded by a pile of dishes, packets now empty of ingredients, a very unrecognisable floor beneath my feet (the kids get a little carried away with stirring - the usual scenario is half in the bowl, half on the floor) and 2 kids chanting “is it ready yet?”.  With the end in sight I soldiered on to completion and by lunchtime we had success.  Sorbet finished and in the freezer, chocolate cakes cooling on the bench, and a sparkling kitchen.

I often smile at the end of a day like today.  In amongst the chaos of the kitchen and with kids covered from head to toe in a mixture of powdery flour and sticky cake mix, I regularly ‘vow’ never to do it again, but when I see the enjoyment on the kids faces as they devour the wonderful treats they have helped create it is all worthwhile.  And it is an activity that Jack loves.  So often I avoid doing things with him that other kids do, simply because it can be too overwhelming for him.  At least baking is something he will get involved in, and that challenges him, but won’t cause a meltdown because of overstimulation.  It’s worth every sticky mouth and hand.

Children with Aspergers Syndrome often struggle with social situations, unable to process information or their environment appropriately or in a manner that is timely.  However, roleplaying with your Aspergers child can be a great way of helping them to learn and practice responses to situations they will inevitably be faced with, and at the same time help them to understand that different actions have different consequences.

When using the process of roleplaying, the idea is to create a scenario related to your child’s life.  A scenario would involve creating a setting - time, place and people involved.  It would also involve an explanation or discussion of what might be happening in the setting, as well as a discussion of different responses or actions.  And of course, there must be appropriate or ‘natural’ consequences for various actions.

With the help of your child (and perhaps other family members or friends) work through the scenario slowly.  Give your child the opportunity to try out and explore different responses to the scenario and help them through dealing with any consequenses that they will face as a result of their choice of response.  Don’t worry if your child makes an inappropriate choice or struggles to make their way through the role play - the idea of roleplaying is all about practicing, and the more a child practices the easier it will become for them to deal with these scenarios in real life.

Introduce roleplaying in to your Aspergers child’s life gradually - like any other change, there may be some resistance at first.  Work at it slowly to start with, supporting and encouraging your child to build their self confidence.  The benefits of roleplaying with your Aspergers child can be enormous.  Your child has the opportunity to explore real life situations, and as such explore the consequences of their actions and responses in a safe and ‘forgiving’ environment.

One thing to note is, children with Aspergers Syndrome often take things very literally, so if your child is unable to imagine pretending to be another person, it may be an idea to try this with puppets, or use photos of people on ice cream sticks. 

In the past, whenever Jack’s energy and aggression had been building up I would send him outside to run laps of the back yard.  Well, I have just discovered an even more effective way of releasing that energy and anger before it becomes a total meltdown.

The discovery happened quite by accident the other day whilst I was busy changing sheets on the beds.  Jack’s tension had been building all morning - I had been sensing something big coming but just hadn’t quite been able to knock it over.

I had just gathered up the sheets in our bedroom to take to the laundry room when Anna came racing in to the bedroom squealing from being chased by Jack, and as Jack dived in to the bedroom after her I took the only action I could to protect both Anna and I from being bowled over, and I threw the doona over him.  Caught by surprise he dropped to the floor and I wrapped the doona under him to slow him down a little, so as to give Anna and I some time to recover before he leapt out from underneath.

But he didn’t leap out from underneath.  Instead, he proceeded to wrestle with the doona - pulling, twisting and punching it until he lay exhausted on the floor on top of it.  I was amazed at how totally peaceful he looked.

Since then, I have pulled the doona out a couple more times, with the same result.  Today he actually asked me for the doona so that he could wrestle for a while.

Unconventional, yes, quite bizarre in fact, is this new found method of releasing energy and tension.  But it works, so I’m sticking with it for now.

We were delighted to hear this ‘breaking news’ in Australia today:

PM unveils help plan for autism families

Wednesday Oct 3 11:20 AEST

The Howard government will on Wednesday announce a funding package to aid the parents of autistic children.

The package will be announced in a series of coordinated launches involving senior ministers across the country, including Prime Minister John Howard, who is on the Gold Coast.

Read more on this story at : http://news.ninemsn.com.au/article.aspx?id=84226

Despite the usual political comments back and forth between parties, claiming one’s policy is better than the other, it’s great news for Australian families.

Steve & Elissa.

Recently my mum, Geraldine, organised a fundraising event to raise money for organisations supporting autism.  We held a morning of pampering where guests were treated to facials, foot spas, hand treatments, massages and reiki.

This post is in thanks to my mum and the 4 other wonderful ladies, Katherine, Jacinta, Shannon and Cynthia, who so generously gave of their time to ‘pamper’ our guests.  It is also in thanks to the group of beautiful ladies who so generously gave donations to the cause.

A fabulous time was had by all - indulging in total relaxation, champagne and scrumptious finger food.

We had the opportunity to share Jack’s story, and the story of what many families face when living with autism.  We highlighted some of the challenges that parents and families face, but we also celebrated the many wonderful things that people with autism bring to our lives.

Our goal was to raise understanding and awareness of autism in a positive way, and at the same time raise some money to help families - goal achieved!

Elissa