At first I really struggled to know where exactly to start this post, so late last night I sat down with a pen and paper and wrote out as many random words that came to mind in an attempt to try to figure out what was really bothering me.
I came up with: bewildered, annoyed, helpless, frightened, angry, exhausted and I kept coming back to the one word that crept up more often than the others: frustrated.
And I determined to try to find out why I kept coming back to that word.
I realised that when you’re a parent of a child on the autistic spectrum, you are thrown directly into the deep end and forced to assume the role of not only parent but also that of ‘interpreter’ and “translator’ and you take on this role often several times every single day whether you want it or not.
And most of the time I am totally ok with that, but then there are days that my inability to decipher and decode what my son’s actual crisis is about is when the words like exhaustion, angry, frightened and helpless start to creep in as well.
Last October I took the children home to visit my Mum in the school holidays, and while we were up there, we attended an 80th Birthday party for a close friend that Mum had helped organise. It was a great night and I think only a handful of people actually know what went on behind the scenes in our little world that night. I’m sure that most partygoers were blissfully unaware that my little boy was breaking his heart and clawing at himself in major distress only 2 rooms away from the festivities. Mum was helping in the kitchen and also unaware at first of the mayhem I was dealing with.
And that’s because I’ve become very skilled at removing my distressed child from the attention of onlookers in situations like that night before the brown stuff starts hitting the fans. It’s become my superpower
That night last year was triggered by one small remark that I had made offhandedly to Harley who I saw drinking his second can of soft drink. I casually said to him: “You’ll make yourself sick if you drink too much of that stuff”, and I walked over to greet someone else that had waved me over.
As I started chatting to this lady, I glanced over her shoulder and saw Harley’s face contort and his body stiffen and I knew I had to get him out of there immediately. I JUST knew. I excused myself and apologised quickly and ran the eight or so paces over to Harley and grabbed him under my arm calling out to Ella at the same time to keep on eye on Lucas. She nodded knowingly and grabbed his little hand and skipped outside with him towards the grassed area.
I love that girl.
Anyway….I got Harley outside through the fire exit and sat with him as he bent over the 2 foot brick wall flapping, screaming and crying his little eyes out. He was virtually non-verbal but I managed to figure out that the groans,grunts,screams and cries were to the tune of “You said I’m going to be sick….I don’t want to vomit, I don’t want to be sick, I’m so sorry, I’ll never drink lemonade ever again”
Oh yeah…..Did I mention that one of the traits of individuals on the spectrum is EXTREME literalness? Well it is.
He had convinced himself that he was going to be physically sick and because he is a massive germ-o-phobe….this was totally unacceptable to him. He stresses if someone even SAYS the word vomit in his hearing so the thought that he might actually be sick himself, had done his head in. I sat there with him for what seemed like hours and I managed to get him to calm down (well, the screaming and crying stopped but the rocking and the nervous flapping hung around a lot longer) and I walked him back inside because he was begging to wash his hands.
As I waited for him outside the bathroom, I saw a friend who I grew up with and hadn’t seen for years, and we started chatting. He and his lovely wife have a beautiful daughter with PDD-NOS and I only had to say that Harley was “having a moment” for him to understand exactly.what.I.meant.
Shortly afterwards, Harley walked out of the bathroom and my friend (God bless him), took one look at my boy and gave me a hug saying: “Ok……You need to leave right now, I understand completely….it was great seeing you.”
I picked Harley up like a little infant and carried his limp sweaty body out to the car with Ella and Lucas following me. I placed Harley into the car seat but he clung to me like a baby koala refusing to let go.(This child is 8 mind you). I couldn’t stand there holding him with my back bent on that angle so I lifted him out and sat with him in the gutter. And there we sat for another half an hour rocking and the tears stopped wetting my shoulder and he eventually released his grip on me and we were able to all get into the car and drive home.
My mum told me later that my friend had said that when he looked into Harley’s eyes, it spoke volumes and that everything made total sense to him at that moment.
I’ve learned long ago that parties and Harley just don’t mix. THIS is why we regretfully decline a lot of invitations (and probably why they’ve stopped coming in anymore).
And it’s important to mention that it wasn’t just the literal comment of mine that sent Harley spiralling downwards that night, that comment was only the trigger. I had already noticed anxiety rising in him earlier on due to the crowds, loud noises and unfamiliar surroundings. He had his headphones on but the noise wasn’t the only thing bothering him.
Look closely. Those eyes tell a lot. They are saying: "I'm nervous but I know Daddy will protect me"
Which all leads to me yesterday.
Yesterday was the Easter hat parade at my children’s school. Just those words induce horror in a lot of ASD parents and it was no different for me. When I arrived, the kids were all seated in their classes in the quadrangle with the parents and visitors all sitting and standing in a large circle around them. There were a LOT of people there and each class danced around in a circle to very loud and lively music one by one.
Harley’s class got up and from 20 metres away I saw his eyes and said to my friend: “Uh-Oh, he’s gonna blow”. I just knew. It was written all over him and though he may have looked shy or reserved or even nervous to the average Joe….I knew exactly what I was looking at. I’ve seen it many times before, it was unmistakable.
So how did I know?
I have been asked many times how I “know” when he’s about to topple over the edge from coping to a soggy mess and until yesterday I was unable to actually pinpoint exactly how I know. The answer is in the eyes. As my friend pointed out at the party, it was in the eyes. Yes, the eyes tell a LOT. It’s ALL in the eyes.
These eyes say "I'm safe and happy".
As soon as the parade was over I took Harley by the hand and walked him over to his teacher. He stood beside me silently head butting me and yanking at my hand and I asked her to look closely at his face and body language and explained that THIS is what the lead up to a huge explosive meltdown looks like. I asked that if she ever sees this face….it would be advisable to help him escape to a quiet place as quickly as possible. I explained that it’s when his sensory system is about to blow and that it’s something that you preferably need to get to in the early stages but if not – you need to deal with it ASAP.
I walked him into the quiet vacated classroom and he sat in the corner crying, rocking and shaking. His eyes were filled with pain, with fear and they were pleading for me to fix it all for him. To make it all go away and to help him to soothe himself because he knew he was past the point of no return. He didn’t speak a word but his eyes told me all I needed to know. The rest of the day was a complete write off and ended badly with the effects on the rest of the family carrying over well into the night. I put on my brave face and acted all nonchalant because I’ve gotten that down to a fine art now But yesterday was hell in many ways. Hours and hours of inconsolable crying and screaming will do horrible things to most people, and I for one, cried long into the night.
And this is where the word frustrated comes in.
Everyone assumes that as his mother that I always have the solution. That I can come along and save the day and that because I can read him that I can make it all better, but this is not always the case. And most of the time I wing it all anyway because what may work one time isn’t guaranteed to work the next. It’s frustrating to be able to predict most meltdowns yet not know how to deal with them.
I was so frustrated as I watched other families laughing, talking and enjoying their picnic lunches with each other, while I had to go and fetch the head of junior school to retrieve my son who had locked himself in the boys toilets crying and screaming only to run out and escape and be untraceable for the next half hour.
I was so frustrating to have to make my youngest child miss out on his first ever book parade after activities and it was equally as frustrating to have to go over to middle school and ask my 12 year-old daughter to leave her friends and sacrifice her lunch hour to help me by watching one of her little brothers while I searched for my absconder and do massive damage control when I finally found him.
It was even more frustrating for me to see other children on the spectrum sitting quietly with their parents eating their lunch while I bravely held back the tears yet again. I wondered what they had all done that I had forgotten to do?
Why were their kids coping and mine wasn’t? What did I miss?
How come no-one else’s child lost it on such a grand scale?
I finally convinced myself that these other parents must do what I do and whip them outta sight at the first inkling of an explosion too because any other answer would have been far too tough for me to bear.
So yeah….. Frustration is the word of this week.
But next week I’m aiming for fantastic
What are you all aiming for?