Thursday, 4 June 2015

A whole new world

As I sit and write this blog, from the corner of my eye I can see Crazy.  He is sitting on the other couch, with his best pal 'Froggy' (a cuddly night light type toy) pressed against one ear playing music, leaning on the tablet speaker which is currently blaring out merry 'Thomas and Friends' tunes at full volume, his little head sandwiched in the middle of this overwhelming cacophony.  I have tried removing one or the other.  I have tried turning down the tablet.  I have tried physically comforting Crazy.  All of these actions are met with screams akin to those of pain.  I can do nothing but wait until he is ready to come back to me.  He has retreated into his own world to calm himself and I can only assume the noise levels are to drown out everything else.

I can understand this.  On a bad day I love nothing more than a drive in the car, my favourite tunes blaring, singing at the top of my voice.  After a particularly tough week, you can guarantee if a gig with my band follows at the weekend my vocals will be at full effect.  Singing, somehow, takes it all away and I throw myself into it to forget.  Being in the moment, singing that song, blocks everything else out.  Maybe that's just his way of doing the same.

What has caused our fun loving, happy boy to be in such distress?  A bus.  Well, actually, the bus was the final straw.  A build up to the bus.  Let me explain...

Since Crazy was tiny we have suspected that all is not entirely 'right' with our precious boy.  He is a happy, healthy boy and for that I am truly grateful, but some of his behaviours are somewhat quirky.  I love this about him, I love his uniqueness, but I worry.  I worry that if he is too different, too quirky that he may be rejected.  As Crazy has grown, some things have improved, but some are worse.  His speech is delayed- but hey, loads of two year olds don't talk yet.  There are other things, but you don't need a list.  I mention his speech because recently he has suddenly started talking.  He has decided it's time to fill the voids left in our conversation- maybe he is just sick of me babbling on at him.  He fills these voids by repeating whatever he hears.  Usually just the last syllable of words.  For example "Shall we go in Mummy's car to Nanny's house?" will come back at me as "Me, car, Nee, housh".  Other things he will mimic precisely.  He rarely speaks spontaneously and if he does its for a need. A need for more juice usually.  I have mentioned my concerns about Ollie's behaviours to others only to be met by assurances that he is fine, he is just taking his time, he is just energetic.  He is all of those things, but all of those things and more.  We finally mentioned our concerns to our GP only to be referred to a specialist in ASD for review.

His review was this week.  I was filled with anxiety, as I'm sure was Mr T.  Crazy took it all in his stride, coping amazingly with this new place and new people and seemingly quite happy to have some interesting new toys to play with.  The doctor was so very patient with Crazy and with us and our questions.  The end result of this review was a positive one.  We are now quite sure Crazy is autistic, a plan being put in place to find out exactly where he may need extra help and to rule out any medical issues which could be affecting his behaviour.  To hear a doctor say "I have little doubt that your son is autistic, a team of people will work with you for an exact diagnosis and put the correct help in place over the next 18 months" left me with mixed feelings.  Relief to have my suspicions confirmed after all this time.  Fear for Crazy's future.  Frustration that I hadn't spoken up to the right people sooner.  Anger at the injustice that this precious boy may have a tougher time in life than he deserves.  Pride- just in Crazy himself, exactly as he is.

So what has changed? Nothing really.  Except maybe the way I see things.  Is he being difficult? Maybe, but maybe for reasons I don't yet understand.  I can tell when my son is being naughty and there are appropriate consequences.  I will not allow my son to coast on an excuse for life.  In that aspect nothing will change.  But I'm learning to be a little more considerate of how things may affect him.  We already knew he needed a lot of preparation for any change to his usual routine, but now we acknowledge that more than ever and endeavour to take the time to really let him understand what we're saying to him, to make sure there aren't any surprises where possible.

So what happened today? Too much too soon.  My error in judgement.  I expected him to cope with a situation he just wasn't ready for.  We began by dropping Pip to her Aunties house for a day of snuggles whilst I accompanied Crazy on his preschool trip scheduled for today.  This is out of the norm and he became anxious instantly, calling "where are you?" and searching the car for her.  We then took a different route to preschool which meant, although I told him where we were going, he didn't register it as the journey to school.  He wasn't prepared.  Then when we arrived at the school to find parents waiting around to wave off their children, fluorescent bibs on all the children (which Crazy was even more distressed about having to wear) and then walked to a huge bus to carry us all off to a day at the farm it all became to much for Crazy.  My funny, lively, bright-eyed boy was reduced to a wailing wreck.  His sweet nature contorted into a frenzy of panic and lashing out to protect himself the only way he knew how.  All of that could be overwhelming for any two year old. but to think that he may be processing things in an entirely different way to any I understand makes me feel terrible for even trying.  I sat beside my car on the floor, restraining this boy who's every instinct is telling him to run but there is nowhere safe.  I hold him tight through the punches and kicks.  He is saying "out" amongst his screams.  He wants to be free that badly he has found the word- but I can't listen.  I tell him over and over that it's ok, that's he's safe that he doesn't have to go anywhere.  I hold him as tight as I can without hurting him, I hold his head tight against my chest and he stops.  He calms, the screams stop.  We sit for what feels like an eternity until I feel I can safely get him into the car.  As soon as I release pressure he gets in a state again but I have to get him home, to safety, to a place he can calm himself down.  I fight him into the car and a screams all the way home.

Why did I try?  I don't want him to miss out.  I won't let us be housebound and watch the world go by.  We'll start smaller.  Piece by piece we'll put together these two worlds for our dear boy.  I will learn his world as he learns ours, much like any child.

In the time it has taken me to write this, Crazy has calmed somewhat.  Froggy is now silent. The tablet is still loud but no longer pressed to his head.  Best of all, he has come back to me, he is sitting beside me, almost close enough to touch- but that's not my call.  It's his when he's ready for it.  When he is ready I will be holding his hand and taking him out to face the world again.  Its a whole new one for both of us.  All of us, as a family.

Kindly published by 'Spectrum Kid', for more information about ASD and related conditions please visit: