Jekyll & Hyde

When the Monster Only Comes Out At Home

monster feet small

Aspergers and ASD have a habit of taking their toll on the parents. I’m not saying it’s a breeze to live it and breathe it as the child, certainly not. In fact perhaps it is because I can see how tough it is for my child, it really takes its toll, especially in my heart. But nonetheless, I’ve still found myself dramatically whining “it’s not fair, why me, what is it about me that makes him a nightmare at home and an angel at school?”

 

Don’t get me wrong. I’m glad it’s that way round. I’m glad Boo does a good job of functioning out there in the real world. I’m glad he ticks the boxes of the Good Pupil and doesn’t rain molten lava on my head by being ‘that child’. I’m glad I can wander in to pick him up from school and know the teacher isn’t angling for my eye today.

 

But, by heck you can feel bad when the minute the car door shuts, the amiable, smiling kiddo launches in to a roaring tirade and commences head-banging on the dash. To be fair we’re normally ‘lucky’ and can get as far as home before Mr Hyde rears his ugly head. And in fact, since my child changed schools a few months back, Mr Hyde has largely stayed hidden. But I’ve lived it, and I’m not foolish enough to think I won’t again.

 

My peaceful yet full day of work comes to an abrupt and deafening end on those days. No gentle snack time, daily recounts, and gentle coaxing to homework then: Just stage management. How to keep Boo safe from himself and his rage, whilst also ensuring his two younger sisters are ok. And sod off headache, there’s no room for you. This child, who moments before was ‘absolutely fine’ is now a ball of absolute fury and emotion and anger. And there’s.nothing.you.can.do except wait until it passes.

 

I’m getting better at predicting when we’re heading for meltdown, particularly this post-school Mr Hyde display, and if I can get him in and to one of his self-calming behaviours quick enough, then I may just be able to avert it. But that’s pot luck. I also know I’m lucky because Boo has never taken his rage out on anyone else, I know many parents of ASD kiddos aren’t so lucky. Everyone’s mood sinks. My teeth are set on edge as I try to parent and maintain a household through false calm voices, and chaos tends to reign.

 

For a long time I would beat myself up during these meltdowns. What was so awful about home that this is how he behaved? What was I doing wrong? Why could he hold it together at school but not for us?

 

And then my Friendly Gem introduced me to a concept coined by Tony Attwood (all round ASD and Aspergers Guru). It’s actually termed the Jekyll and Hyde phenomenon. It’s real. It’s normal. It’s completely and utterly par for the course in those with High Functioning Autism. You are not alone. Up and down the country, across the globe, thousands of front doors are closed in peace at the end of the school day only to be kicked minutes later in rage. It’s normal.

 

Seriously. This Jekyll and Hyde thing is not just you. In fact it’s nothing about you except to say that you’ve made your kiddo feel safe enough to let down their guard. Basically, Attwood explains it much better than I can in a few lines of blog. But the Jekyll and Hyde phenomenon explains how the “indicators of stress are not conspicuous at school”. Basically, school requires so much of an Aspergers kid beyond accessing the regular curriculum.

 

Alongside learning their Maths, Literacy, and important things like who can burp loudest, they are also having to constantly use reasoning skills to navigate the classroom and playground, where others can use intuition. They have to be on the ball from the moment they walk in to school, till the moment they walk out, no emotional let up. Ever. They navigate via mistakes and constant watching and learning. It’s exhausting. They have to decipher things cognitively, which to others come without thinking. Add in that these kids also tend to have impaired Executive Functioning (that’s the bit that makes you able to plan, organise, time manage and all that jazz), which is kind of vital for school, they have hard days. It’s tough stuff.

 

And it’s not just Tony Attwood who gets this about our kids. It’s common enough that Autism UK have a whole page of their site dedicated to it.

 

Basically, just because the meltdown, raving, raging, door kicking happen at home, doesn’t mean it’s anything to do with home. It doesn’t mean the trigger, or indeed the cause, lie there. These kids have spent a day holding it together. Getting through the day and conforming to what’s expected of them – against their natural ability. Doing it all on sensory overload because of the intense sensory experience of school when these very children tend to be the ones with sensory processing difficulties, but they’re self-conscious enough that they don’t want to be teased for using their aids such as ear defenders. And then, just to top it all off, their body language and facial expressions don’t convey to the people around them what they are actually feeling. A face and body posture that says “I’m fine, I’m having fun” for a neuro-typical child is in fact saying “I’m overloaded, I’m going to blow a sensory gasket” in the ASD one. Asking might not get a teacher much further either, given that emotional verbalisation is often poor. All the cues that kiddo isn’t managing are missed. One after the other. Time and again. Until the bell goes.

 

The Autism Education Trust points out how this can pose a problem when it comes to communicating with school about your child. They get the ‘best’ of them (sort of, but not really, more on that another day). The version that can put on a show. At best they’ll have heard of the Jekyll and Hyde issue, at worst they’ll imply you’re to blame and it’s because you don’t parent well enough. Just what you need. But the real danger is that they simply don’t realise how stressful a school environment can be for these children.

 

When you get a teacher who recognises it and manages it, it’s bloody marvellous. Helping the child to navigate the school day better, you get a child come home who doesn’t hit Meltdown before the lunchbox contents are in the bin. You might have, you know, a normal afternoon and evening where the family can play, learn, and spend time together.

 

Simple things like factoring in visual timetables, recognising the child’s own unique cues and sending them on an errand away from a noisy classroom or taking the time to explain something that has arisen socially in a way they understand even if they don’t look like they care either way… that’s what we need. That’s what the Jekyll and Hyde children need. I’d go so far as to say: if my ASD son is regularly having meltdowns after school, the failing isn’t mine. He is being failed by school. Don’t deflect blame on to me and my already overloaded Guilt-O-Meter when the fault lies within you. But it takes a big dollop of self-esteem to say that.

 

Just because I have a Jekyll and Hyde doesn’t mean I’m a shit parent. It doesn’t mean I’m exaggerating or don’t know how to discipline. It doesn’t mean my child doesn’t have enough structure at home. It doesn’t mean he is badly behaved and tantrums like a two year old. It simply means he has ASD and he needs some help during the school day so he’s not overloaded.

 

But you as parents of a Jekyll and Hyde definitely need to know you’re not alone. It’s there. It’s real. It’s no reflection on you at all except to say you’re ace, you’re doing brill, and you’re a safe space in this crazy sensory social maelstrom.

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