Thursday, 21 March 2013

One step ahead

When you have a child with an ASD you become really good at predicting disasters.  You can walk in to a room, perform a quick survey of potential triggers and do one of two things.

The first thing you can do is avert the crisis.

An example.

Our son Ollie can get fixated on iPhones and iPads.  When he is using them in a supervised manner at therapy they are nothing short of fabulous.  I can't sing their praises enough.  When put into the hands of Ollie in an unstructured manner they spell out danger.  He plays with them in a way that provides no educational benefit, flipping from app to app in the blink of an eye without taking any notice of what he has seen, constantly searching for the right sound, the right tune.  Once found he will press the same button over and over and over and over again.  When he is in that zone it is extremely difficult to snap him out of it, and when the phone or tablet is inevitably taken away from him he throws a tantrum of epic proportions.  Every.  Single.  Time.  I get scratched and pinched, he thrashes about and hits his head on me or anything else nearby, he sobs, and at times gets so worked up that he makes himself vomit.  Not pretty.

To prevent this from happening I ALWAYS walk in to a room and move phones and iPads out of reach.  When people are at my house I ask them to put their phones up high.  I found it really uncomfortable being so directive to start with, but the pay off is that we don't get epic tantrums!  It is really the only thing that elicits such a response in him (for now!).

When we are out and about people always say to me 'Stop checking on him!', 'He's fine!', 'Relax!'.  They mean well, and for the most part there is nothing to worry about.  Ollie really is quite low maintenance most of the time, but we need to be one step ahead to keep it that way.  There are very few places where I can relax, like truly sit down and not worry, in a way that I could if Ollie were neurotypical.  It is just not going to happen.  He has no sense of danger, no sense of space.  He could wander out of someone's front door and out in to the street, in his own little world, and then suddenly freak out because I wasn't there.  He'd be lost.  He would be unable to communicate.  He would have NO IDEA of how to find me, how to find a safe person. It sounds terribly dramatic, but this is a reality in our lives.  

The second thing you can do when you see a disaster on its way is brace for impact.  You see the storm coming well before it hits, realise that you are powerless to prevent it, and you man up and hope to ride it out swiftly.

Birthday parties are situations where we have to brace for impact with our little guy.  He is absolutely lip dropping, body trembling, mumma climbing, koala clinging terrified of groups of people singing happy birthday within earshot.  He always has been.  Initially, long before the A word was mentioned to us, we thought it was a phase that he would grow out of.  There are plenty of kids who don't like it when people sing happy birthday at their first birthdays.  Sure, Ollie's reaction was a little more extreme, but we thought it to be normal.  It isn't.  It is an area where he experiences sensory overload and needs help to ride through it.  At every party we know it is going to happen, but it isn't exactly reasonable to ask that they hold off on singing happy birthday, is it? I remember at Ollie's second birthday we made the decision not to sing.  It was his birthday and he hates it, so there.  Many of the kids were disgruntled by this decision!  So we ride the storm.  We try as hard as we can to minimise the fear.  We take him to another room, stand on the periphery of the crowd, preoccupy him with something else, but sometimes we are just not far enough away and he gets really, really scared.

It is those days when you don't see the disaster coming that are the hardest.  When all is well in the world and them BAM! out of nowhere the storm rages.  Those are the days where it smacks me in the face that yes, we have a child with an Autism Spectrum Disorder, and it is not going away.  We are going to have days that totally suck.  We are going to feel helpless and overwhelmed.  We are going to need to eat the cooking chocolate that is stashed in the baking cupboard because we decided not to buy chocolate this week.

But you know what? Those days are a lot less frequent than the days where I feel totally overwhelmed with how consumed with love I am for my family and for everything that we have, everything that we are.  Most days I just want to squish my boys, all three, because I love them so much.  Most days I go to bed knowing that we are living life to the fullest, and I will not, I refuse to let myself be broken by this.  These are the cards that we have been dealt and I am going to do everything in my power to make sure that we experience life to the fullest, that we take time to smell the roses, and that we use all of our unique gifts, whatever they may be, to really live life.

Early on when Ollie was diagnosed I read a blog post that really resonated with me.  I have completely forgotten who wrote it.  At the time I spent every spare moment trawling the internet for words of wisdom.  It was my solace.  The words of this blog will stay with me forever.

There is a danger in trying to avoid a crisis.  You might end up missing out.  Just because there might be a storm ahead, and I say might, doesn't mean that you shouldn't go out.  You might be wrong.  The storm might completely pass you by, and in its place may be the most beautiful sunshine you have ever seen.  It might not too, but that doesn't mean that you shouldn't try to see the sun.  If you are constantly trying to avoid the storm you will miss out on how beautiful that sun can be.

I will be damned if I am not going to help my son to see sunshine wherever possible.  Sure, sometimes we will be wrong and the storm will rage, but the next day we will wake up, start again, and keep on experiencing life to the fullest.  We WILL see the sun.        

1 comment:

  1. You made me cry. You are wonderful. And, your character should include 'friend' as one of your roles, because you are a fabulous one, and one to many. xxx