Monday, 24 March 2014

What amazing choreography!

I think we dance the autism dance pretty well in our household.  It's a bit like any other dance.  When you first start learning you feel like a klutz (klutz is the best word when you see it written, isn't it?).  You stand on people's toes. You get the moves wrong.  People get flustered.  There are times when you want to give up, but then something reminds you that if you keep trying you might just get better, and so you soldier on.  The next time you try it is a little easier, you do it with a little more finesse, and before you know it you are a dancing professional.  

I was recently reminded of how much goes in to 'managing' Ollie's autism symptoms.  Because we seem to run like a well-oiled machine for the most part we often forget just what we do to ensure that he is minimally stressed and content.  At the beginning of the year when Ollie started three year old kinder we wrote a document explaining Ollie's challenges and what we do to manage them.  I thought it would be a few pages but it ended up being an epic.  Putting it on paper it really hit home that so much goes in to keeping our household happy.

It starts from the moment Ollie wakes up.  We know that when we open Ollie's bedroom door there is a possibility that he may have soiled his nappy overnight and tried to get it out with his bare hands.  We know that if anyone but me or his Dad open the door to greet him he will burst in to tears.  We prepare his breakfast of jam on toast, stat, and if we are not quick enough to put the lid back on the jam he will be in it with his bare hands.  If there is anything on his plate that he doesn't like he won't eat anything, even the things that he does like.  If eggs touch his lips he retches.  He eats half a kilo of raspberries a day, frozen, straight from the freezer.  The freezer, fridge and pantry all have locks on them or Ollie raids them and does strange things like eats fish fingers in their frozen state.    

There's the car.  We need to play the music on random or else he expects the songs to be played in the same order EVERY.  SINGLE.  TIME. and gets really distressed if there is a deviation from the expected order.  We know that he will become upset if we drive a different route to our destination than the route he knows.  Getting petrol is a nightmare and is best done when he is not in the car.

Warnings are essential for Ollie.  We need to brace him for what is coming all of the time.  If we are changing routine, if we are leaving somewhere, if we are taking something from him that we know he'll want to keep, if we're turning the shower off, etc etc etc.  Transitions from one activity to another are much easier if we warn him and in most instances count from five to one before making the change, and often take the step down approach.  An example of this is if he has the iPad.  We would tell him we're taking it, count from five to one, say 'bye bye iPad', and then give him something he likes a little less than the iPad - say a book.  Then we would repeat the procedure with the book, so instead of going from iPad to nothing, we're going from iPad to book to nothing.  It helps to ease the transition.

Speaking of the iPad, or any technology for that matter, it needs to be closely monitored for it to not get completely out of hand.  Ollie can get extremely fixated upon technological gadgets, and the more he has them the more fixated he gets, and the bigger the meltdown when we inevitably take them from him, or that battery runs out.  Batteries running out.  Shudder.  He becomes completely obsessed, and tries to find iPads and phones everywhere we go.  Very short bursts in a supervised environment are fine, but anything more is horrific.  We've got this under control now.  We don't let him use the iPad at all at home anymore, and very rarely let him use the phone.  We save it for when we REALLY need it, like when we have been in the waiting room for four hundred and fifty six hours  at the doctors (Dr Albert, you know it's true).  Now you know why I walk in to people's houses, look for phones and put them out of reach before Ollie sees them!

Speaking of walking in to people's houses, we need to make sure that there is no way to get out when we arrive at new places.  Does the front door lock? Are there gates at the sides of the house? Are the locks high up?  If Ollie was to wander out on to the street and become lost he would have no way of identifying himself.  He can't speak enough to do that yet.  He will one day, but not yet.  We have been in a situation where we have found him in the middle of the road so we can't be too careful.  

We know not to deviate from the lyrics of a song.  If Old McDonald Had a Zoo instead of a Farm then the world would come to an end.  We know not to whistle.  Whistling may get us a pinch or a scratch, however I more often than not get 'No Mumma' now instead (thank your higher power for the therapy we do!).  We know not to let him watch DVDs as the same order every time gets him stuck in a loop that he then expects every time.  We know that when the new Wiggles come on to the screen that he will run from the room covering his ears and crying.

Don't drive or ride past playgrounds unless you plan to stop there.  If we go to the community centre with Dad in the car then there is an expectation that we are going swimming.  Dad only comes to the community centre in the car with us when we swim.  Yelling ensues if we don't end up in the pool.
Don't say ice cream out loud unless you plan to give him ice cream, or else he will guard the freezer until ice cream is served, saying 'eye creams (how cute is that?)' over and over and dragging us by the arms.

If I kept going I would be here for days and days, but you get the idea.  We dance this dance well, but man what a calorie burner!  Most days it just seems normal.  Some days suck.  I am pleased to say that the gap between those days is getting further and further apart.  I can't remember the last time I cried.  This time last year I wouldn't have been able to tell you the last day I didn't cry.  We've grown.  All of us.  This is our normal.  It's not easy, but it's not horrible either.  It is a privilege to have such a beautiful, unique creature in our lives.            


  1. I envy your strength to do that every day. You have a fantastic family Susie.

    1. Thanks so much Trish. I think they're pretty fantastic too! :-)