Blog #1: Our Story, Part One. ‘You never saw this coming, did you?’

Here is part one of my story so far and it’s been the most difficult for me to write. It’s daunting because I still haven’t really processed parts of our past. And I’m painfully aware that I’ve made mistakes. Although I now identify myself as being a parent of a child with autism and PDA, this was not ‘officially’ the case until JJ was seven and a half. Seven and a half years of wondering and suppressing nagging feelings. The benefit of hindsight has reframed situations in a way that makes me distinctly uncomfortable and brings up a lot of pain. But I’m going to give it a go, as I’m sure some of you have felt just as daunted when it’s time to re-examine the past and think about how you ‘got here’.  

One thing that struck me as I was writing is that everything in the beginning was from my perspective: how I was feeling, my reactions to JJ’s behaviour. I had no idea what JJ may be thinking or feeling. I still don’t know everything about JJ’s thoughts and feelings, but I have become adept at translating the subtlest body language, the slightest facial expression and the tiniest change in the tone of his voice. If only I’d had this knowledge when he was a toddler.

JJ was a dream as a baby, but I was definitely NOT a dream mother. I was a tightly wound ball of stress and worry. At 34, I was totally unprepared for the emotional hand-grenade that is a baby being thrown at my ordered life. Eight years of trying, numerous crushing disappointments and some pretty traumatic fertility treatment had culminated in me being hospitalised with a serious illness. Then a few months later JJ came along and he was incredibly calm, chunky and cuddly and seemed at peace with the world. Everything else – emotional wounds that barely had a chance to form scar tissue – was pushed to the dark corners of my mind. No room for that now.

Fast-forward – two weeks before his second birthday, JJ flung himself down on the pavement outside our house and screamed over nothing in particular, grazing his face at the same time. He had a troubled and angry look in his eyes that I’d never seen before, and I remember a friend counselling me later: “Oh, you never saw this coming did you!? Welcome to the Terrible Twos my darling!”. So, that was that. I was resigned. The dream baby was no more. But this was all perfectly natural. And it would pass.

However, from this point in JJ’s life onwards, I always had the creeping feeling that JJ was resisting something that was happening to him, something he could not control. His body was growing; he was on a one-way journey to toddlerhood. And he didn’t like it one bit.

Compared to his peers, JJ was slow to walk and talk, but this didn’t worry us for one second. All children develop differently. At his two-year check, when a concerned nursery nurse suggested speech therapy, we instantly dismissed the idea without discussion, already feeling distrustful of a system which we believed measured children by arbitrary milestones (50 words by age two – who decided that?!) which appeared to take no account for individual differences whatsoever.  JJ was able to communicate his needs and seemed to have good comprehension. We were fine.

JJ continued to have regular tantrums as any other two-year-old would. But we also started to experience some unexpected and unusual behaviour which we struggled to understand, such as a fear of birthday parties. JJ would scream and scream when we arrived, but as he had very few words, we couldn’t understand what was happening. Why wasn’t he behaving like all his little friends? Parties are fun, right? Music, food, bouncy castles, cake. It didn’t make any sense. Plus, I wanted to be able to sit with my friends and have a break, drink coffee and chat about motherhood and feel that familiar sense of belonging and camaraderie, not stand around outside trying to coax him in, whilst the other parents gave me sympathetic looks.  

This was about the time I started using the phrase ‘Highly Strung’ and also ‘Young For His Age’. And let’s not forget the classic: ‘He’s Just Very Tired’.  

Playgroups were a similar story, and JJ was also beginning to become physical with other children. Some of you reading will know how awkward this is, to be the parent of The Hitter. I still can’t look at a Crazy Coupe car without having horrific flashbacks. JJ finds this story funny now when I tell him, but the child he hijacked the car from and who was repeatedly run over most certainly did not.

At some point during a playgroup, or when visiting a soft play area, there would inevitably be a pitiful scream. Like a nervous Gazelle on the plains of Africa, my head would pop up, cocking towards the sound, quickly scanning the room to judge whether or not JJ was a) in the immediate vicinity and if so b) was likely to be the culprit. Room assessed and confirmation gained that JJ was indeed the perpetrator, I silently appraised the situation to see if I could spot any obvious triggers for the behaviour, by which I could make some sort of excuse. I also carried out a visual assessment of the victim’s parent: Did I know them? Had they actually noticed? Did they look like they would make trouble?

Then came the Purposely Public Admonishment of JJ: “Oh dear, no no no! That’s not what we do, is it? Show me your kind hands! KIND HANDS!” so the other parents could see the situation had been properly dealt with. Finally the Public Apology to the injured party’s parent. Time to pick from one of the standard excuses I have to hand (whether I believe it myself or not). Try to shift focus from the apparent lack of any understanding or remorse from JJ. Quickly make my excuses and scramble for the exit in case he does it again. As I know he will.

JJ was an indiscriminate hitter. He didn’t seem to care who you were, how old you were or what you had done. He even hit a parent once at soft play. He would hit in anger, retaliation, frustration or sometimes with little or no expression on his face at all, as if hitting just because he could. Acting on some private impulse. This scared me at bit if I’m honest.  

I wanted to keep being social with JJ, thinking that this would fix the situation in time. But I was always on pins, looking over my shoulder trying to predict what was going to happen and worrying about the safety of the kids around him. It was mentally exhausting and none of my friends seemed to understand. Taking my eye off the ball with JJ for too long always ended badly. I was frequently crushed with embarrassment, and at a complete loss. A really good friend refused to mind JJ whilst I went to the dentist as “If he’s just going to hit my little girl, I don’t think it’s a good idea”. He had recently walloped her daughter with a terracotta plant pot so it wasn’t a surprise. Recalling that conversation still makes me shudder. 

I remember people saying that once JJ could talk, or at least had more words, the hitting would get better. But it didn’t. He turned his hitting to me. Nappy changes, bath time – anything he didn’t want to do would result in him hitting me very hard. I kept getting the same nagging thought: he is resisting something, he doesn’t want to grow up, he was happier as a baby, why does he show no expression when doing this? I couldn’t fully comprehend or formulate my feelings in to anything coherent, and I couldn’t successfully articulate them to my husband, so I pushed them down. 

JJ developed a (now legendary) fear of hand driers and hair dryers. I briefly considered ear defenders but dismissed the idea, thinking they were just for autistic kids. JJ wasn’t autistic, I knew that. He made eye contact with people, he was social and engaging, so he couldn’t be. Instead, I used my hands as his ear defenders, asked people kindly not to use the driers and started cutting his hair at home. We adapted.  

When JJ started pre-school we were often to be seen dashing up the hill, JJ with an ice lolly in his hand as bribery, always late as he had refused to get in the pushchair. The separation anxiety he demonstrated was intense. He frequently refused to go in, or let me leave him there, but I pushed on and pushed through. Because that’s what you do, isn’t it? You let one of the pink overall-clad ladies peel and prize your crying child away from you. Besides, ‘he’s fine once you’ve gone’, isn’t he? That’s what they always said. You go to work, pretend to be normal, and try not to think about the lasting psychological impact all this has on you and your child, even though it’s bothering you more and more as time goes on. 

To be continued.

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