Tuesday, 21 July 2015

Containing a Tiger

Sometimes, living with Adam is like trying to contain a tiger.  When he's having a good day, he's an absolutely beautiful little boy who delights in cuddles, his favourite toys and spending time with Mummy, Daddy or George.  On these days, it's easy to forget that this isn't the whole picture - or maybe it's a kindness that the brain allows us to focus on taking every moment as it comes.

The other part of the picture is that of a child living with autism who teeters on the edge of meltdown much of the time.  Adam can quite literally transform from a happy, sunny child who is chattering cheerfully to a screaming, thrashing, violent boy in a heartbeat.  Sometimes the reasons are obvious, sometimes they are not.  

At the moment, Adam's current obsession is a desire to open all of the car doors before he climbs into his carseat; we will not however allow him to do this for obvious safety reasons but this means he will open his own car door and then instantly collapse to the ground of the parking lot, and in the midst of his tantrum, will be thrashing his way under the car, hitting or scratching us and screaming so loudly it hurts to be near him.  Any attempt to pick him up, keep him safe by preventing him from thrashing his way under the car or containing him to prevent him running around the car or across the parking lot is an exercise of brute strength.  To endure one of these episodes in a public carpark is to become the object of stares of horror, and sometimes of judgement, from others in the vicinity.  The looks say, as clear as day, 'what a naughty child! Why aren't those parents stopping him from behaving that way?!'    If only it was that simple.

Just yesterday, driving home from nursery with Adam screaming and thrashing in his carseat, my stepson shouted to me that he wished we had soundproof glass in between the front and backseats.  Adam's screams were so piercing that it was painful to be in the car with him.  But as all other attempts to calm him had failed and we had already spent over half an hour in the carpark trying to calm him down, our only option was simply to drive and hoping Adam would grow calmer with the motion of the car.  It was one of the many days on which I was immensely grateful for the special needs carseat that keeps Adam safe and secure in a five-point harness from which he cannot escape.  But still, his own brother wishes for soundproof glass in the car.  I quite understood what he was saying, and yet it was also a heartbreaking comment.

Arriving home, my stepson escaped on his bike as quickly as he could (with my blessing!) in order to escape the noise and I was left to, quite literally, manhandle Adam into the house and try to calm him as best as I could - it took an hour and a half and every strategy I have before Adam finally screamed himself out.  With a currently sprained ankle, this was no easy task.  And all of it was over not being allowed to open car doors.

But the reasons for these meltdowns and tantrums can be as many and varied as you can imagine - they can ensue because Adam is hungry, thirsty, tired, overstimulated, hot, has not gotten his own way, someone else has opened a door before he could get to it, a light was too bright, his toy wasn't working.....I could go on and on.  The point is that I never know, from one minute to the next, whether I will have that beautiful, sunny, cuddly child who melts my heart or the child whom I struggle to contain as I try to avoid being hurt in my effort to keep him safe.  At the moment, I am just about capable of physically containing Adam and/or carrying him at need.  It won't be long before I am pushed past the limits of my strength and I have no idea what I will do then.  

And yet, in the midst of the very dark places, there are also some very bright spots.  This child of mine who remains in nappies at the age of four and can barely communicate his needs is also capable of singing the alphabet, counting to thirty, reciting the days of the week and the months of the year.  He can do simple maths and is at the moment regularly heard singing in his usual blurred voice, "one add one is two, one add two is three..."  When I arrive to collect him from nursery he charges across the room and jumps into my arms, and even though he has to be prompted to say, "Hello Mummy" he still knows who I am and is delighted to see me.

Life with autism is mercurial, often incredibly difficult and even heartbreaking; it can be physically painful and result in numerous injuries inflicted on me by my own child and require almost impossible to describe levels of patience...and yet at other times life with Adam is filled with the innocent joy of simply being a mother and having a small boy crawl into bed with me first thing in the morning (is 4:45am morning?) to snuggle into my shoulder and tug on my arm until I wrap it around him to snuggle him close.  Walking with Adam is a journey indeed.

2 comments:

  1. You're not alone! My daughter has a brain injury as a result of GBS Meningitis. She is 7 now. We dealt with similar issues when she was younger. It was SO HARD. I found that they diminished greatly as she grew older and had more ways to communicate with us. She still has peaks and valleys which have an impact on her mood, but the valleys are becoming more and more shallow as time goes on. Have hope!! It can change a lot over the years.

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  2. Thank you Kristine, that's very kind. We have been told that although Adam is four years old, developmentally he's 12-18months so in the terms, the tantrums make more sense, even aside from the autism. I have no idea what the future holds so have to take it one day at a time and hope for a calmer future!

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