Friday, 24 July 2015

Second Guessing

Yesterday, once we got home from the chemist, Adam was still screaming in his carseat.  For this reason, I quickly dumped our bags in the front hall so that I had both arms and all my strength available to get him into the house.  In the seconds before I opened his car door, I took a deep breath, willing myself to relax and make sure I was capable of helping him into the house, instead of losing my temper and making him come into the house.  He had at this point been screaming for an entire hour so it wasn't unreasonable that my patience was getting rather frayed.

This second of centring myself allowed me to open his door and hold out my arms to him (even though he was still strapped in for his own safety) and say, "Adam, would you like a cuddle?"  He screamed again but then looked at me, with tears streaming down his face, and his next scream was just an infinitesimal bit quieter.  So I said it again, "Adam, would you like to come to Mummy for a cuddle?"  Still sobbing, he at least took a breath in between his screams and this was enough cue for me to feel I could unbuckle his harness and lift him into my arms.  The moment I did, he screamed again, but this time he buried his face in my neck as he did so.  This simple gesture was a turning point.

Adam wrapped his legs around my hips and through his sobs, reached for the car door making it clear that he wanted to close it.  With some trepidation I said, "Adam, would you like to help Mummy with the door?"  He tugged on the door so I added my hand to his and we closed it together.  His sobs reduced slightly and he reached for the key fob in my hand, trying to press the automatic lock button.  I allowed this and then said, "Wow, thank you for helping Adam!  That was such good helping!  You helped Mummy, yay!!!!"  Adam has always responded to praise and this was no exception; his sobs turned to hiccups and he allowed me to hug him close, still very much on the edge but finally calming.

I lifted his head to make eye contact and said, "Adam, would you like a Dumbles?  Would a Dumbles help?"  He looked at me, not saying anything but at least he held my eyes - another step.  So I said again, "Adam, if you come into the house with Mummy, we can find a Dumbles and see if it helps you feel better."  There was no response but that was actually good because if I had suggested the wrong thing, he would have started to scream once again.  

I limped inside, carrying Adam in my arms and gently placed him down on the settee.  He arched his back, just on the verge of screaming again so I crouched down in front of him, found his eye contact and said, "Adam, Mummy is going to get you a Dumbles ok? Dumbles."  Adam's back relaxed just a tiny bit and, taking that as my cue, I went into the kitchen to find a dummy.  I heard a loud crash and a scream from the lounge and rushed back in to find Adam had jumped off the settee, swiped all of his skittles off his toy box and was turning, looking for something else to throw.  

I walked over, took his hand and said, "Ok Adam, would you like to come with Mummy and we'll find a Dumbles together?"  He allowed me to lead him into the kitchen where I offered him a yellow dummy, which he refused but accepted a blue one instead.  We then continued holding hands as I grabbed his drink from the fridge and some dry cheerios from the cupboard.  Offering them to him I said, "Adam, would you like to eat?"  

Without a word, he turned and ran into the dining room, tugging on his chair.  I lifted him into it and, as he dove into his cheerios, the tension finally drained out of his body and my son relaxed.  Realising he'd been hungry, I then rushed between the kitchen and dining room as quickly as I could with a sprained ankle to turn on the cooker, check on him, throw in some chicken nuggets and chips, check on him, grab a plate, check on him....you get the idea.  You see, he's not supposed to be left alone in his booster seat, but with only one of me, I had to do the best I could.

Eventually, with a belly full of child-friendly convenience food, the meltdown was over.  

Thank goodness.  

I sat at the table with my son, nursing a cup of tea (that great British cure-all!) and took some deep breaths.  

An hour or so later, with Chris finally back from work and available to help, Adam had been showered and changed and, as he watched Baby Jake on the iPad, my own tears flowed.  

There is always a cost to dealing with meltdowns, in the moment I react and get through it because I have to, it's afterwards that I have the "luxury" of breaking down, finally able to express how desperately I wish I could have done something differently, maybe reacted better, maybe even been able to use one of the strategies the various professionals have taught me as a way of trying to get through to my son and stopping the meltdown sooner.  

It's at this point that I always second guess myself, wonder if what I did was ok, wonder whether or not I could have done it better.  Helped Adam, and helped myself, coped in the face of the autistic storm in a more constructive way.  Every single time Adam has a meltdown, I always wonder what I could have done differently.  Every. Single Time.

And yet, I know it's not my fault that the meltdown happened; it's not like Adam gives me notice:  "Mother, just to make you aware, I plan to have a full on meltdown in approximately five minutes time.  Kindly be prepared with your best strategies, I believe "social stories" or "now and next cards" would be the best method on this occasion.  Thank you."  Of course that's the whole point and that's why it's so hard; the change is lightening fast and there is no warning.  As I've written before, in a split second, the moment between one heartbeat and the next, Adam can explode.  A calm sunny child happily riding in his pram one second and a screaming, thrashing tiger the next.  

Sometimes, like today, I'm able to realise danger points ahead of time and do my best to prepare him.  Today, we stood in the rain outside the car, with Adam still strapped into his pram and I pointed first to his door, then to mine, saying and signing, "Adam, you may do one...two.  Then, chair.  One, two, then chair."  I emphasised it at least three times as his eyes followed my signs and only when he responded with, "One, two, chair" did I even consider undoing his straps.  The fact that he then continued by saying, "three, four five!" gave me some concern (is that the number of doors he wanted to open or was he just counting?), but by then I was committed.  

Helping Adam walk out of his pram, I held his hand tightly as he opened first one door, then the second.  But at the moment I said, "Now, chair!" he collapsed to the ground once more.  But I picked him up, refusing to take no for an answer and strapped him into his carseat.  Thankfully, today this was possible and he allowed me to do so without screaming.  It was a quiet journey home.  

But what was different, really?  Ok, I tried to prepare him with the steps we would be taking, but he still got upset anyway.  Was he just in a different mood today?  Maybe he had fewer triggers during the day?  Maybe I was calmer because I had prepared myself for a repeat of yesterday?  I have no real way of knowing.  But still, the second guessing continues as I try to plan every moment of my interaction with my son in an effort to avoid or minimise the effect of the autistic storm.

Will it always be this way?  I don't really know.  Maybe he will grow calmer, maybe I will get better at coping, or maybe this is just going to be my life and the only difference will be his increasing size and strength. Nobody can tell me what the future holds, all I can do is hope and pray for the best...and always reflect and try new ways of coping.

Thursday, 23 July 2015

One Hour

This afternoon, outside the doctor's surgery, there was a woman collecting for Marie Curie Cancer Care.  She watched as we pulled up and parked in a disabled space close to her and, as I opened my door and Adam's piercing screams reached her, her expression looked stunned.  She watched - while trying not to make it obvious that she was watching - as I got out of the car, went to the boot to get Adam's pram and set it up.  I looked quite calm.  

Then I opened the rear door of the car and, as this revealed Adam's screaming, sobbing face, she looked quite concerned.  Understandably so.  She watched, while not watching, as I wrestled Adam's screaming, thrashing body out of the car and struggled to strap him safely into his pram and wiped his tears before limping into the chemist.  Adam kept screaming, his body contorted as he thrashed against the pram's safety harness.

What this lady didn't - and couldn't - have known is that Adam had already been screaming and thrashing for half an hour.  I picked him up from nursery in a sunny mood but the usual meltdown started when I wouldn't let him open all of the car doors.  It had taken me twenty minutes to even get Adam safely strapped into his carseat as he screamed and screamed and screamed.  All of the usual offerings of his favourite CD's had been met with screams and as we drove slowly home. the car vibrated with the ear piercing, mind numbing screams that echoed from the backseat.  

It would (perhaps) have been easier simply to drive home but in fact, Adam had run out of one of his asthma medications and so a stop at the chemist was essential.  As I limped inside, wishing my sprained ankle had already healed, Adam continued to scream.  The pharmacist, who knows us well, came out to greet us and even she was concerned asking if Adam was alright.  I had to shout to reply that he would be fine but couldn't summon the energy to explain the car door scenario.  She filled Adam's prescription and we slowly walked back to the car.  

As I opened the doors, the Marie Curie lady watched - more openly now.  After a moment, she hesitantly approached me and offered to help.  I smiled, thanking her and explained that Adam has autism and so he wouldn't accept a stranger's help.  She replied that she hadn't wanted to just stand there and not offer to help - which was very kind of her.  

But then, that comment, the one that is always hard to take.  First, innocuously, "But he really is lovely and sweet," she said.  I smiled in agreement and then she said, "So will he grow out of it?  You know, be ok when he's older?"  

In the background, Adam continued to scream.  

I was polite, explained that Adam was infected by Group B Strep Meningitis at birth and, as a result, he is disabled.   No, he won't "grow out of it", yes, life is hard sometimes (an understatement on occasions like this) but I hold onto the fact that he is alive, when no one expected him to be.  She smiled and said that he was a beautiful little boy and so tall....as he screamed and thrashed in the background.  I smiled too, knowing she meant well and fully intended to be kind and compassionate, then I turned back to Adam to begin the ten minute process of wrestling him into his carseat so we could drive home.

Over the next ten minutes, I was smacked across the face (turn the other cheek is quite literal for me), I was kicked, my shirt was ripped and my sons nails raked across my face leaving red marks.  My ears were ringing from his screams.  I wrestled him into his seat because I had too, but I also wiped his tears and told him I loved him.  

Finally, he was safely secured and as I got into the drivers seat, I rolled up the windows enclosing Adam's screams within the car.  As I started to drive away, Chris responded to an earlier text message saying simply, "Do you need help?"

Do I need help.  Some days there were no words to answer that.  I tugged up my ripped shirt and slowly drove home with my son's screams echoing around me.  

One hour of a life with autism.  

 http://www.gbss.org.uk/why-guess

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.