Pain

I’ve had a break from blogging and I’m afraid my first blog back isn’t a very light one but it is what’s on my mind (I wrote it in my head at 3 this morning) so here we go. The next one will be a proper update on our gorgeous Taz, I promise.

Seizures aside, one of the most painful elements of Taz’s disability is her challenging behaviour. Less euphemistically: when she hits, pulls hair, scratches or (occasionally) bites others. This is a sensitive topic and an issue not talked about enough. I know this from the reactions we get (the most painful part) which burn through me, causing pain in very different ways.

Like many children and adults with a learning disability, Taz can express ‘violent or challenging’ behavior. Most commonly this is her lashing out to those she is closest to for usually predictable reasons (someone in her space, trying to get the attention of someone not engaging with her) and sometimes unpredictable (because her sister is sitting quietly reading or watching TV – this tends to elicit the classic ‘hair pull’ – she wants to engage with her sister but isn’t sure how in the moment so gets a reaction, somehow).

In the last week I have had a handful of my hair torn from my head (as painful as it sounds) and my face scratched by Taz. These are both for reasons I understand. The first, the hair pull was my fault. Here’s what happened:

  1. Taz is playing with Playdoh. I am playing with her and removing it from her mouth when she eats it.
  2. 25 mins in, I am marveling at her attention span, feeling like a pretty wholesome parent but I have also got a bit bored (total honesty here)
  3. I check my emails on my ipad
  4. Taz picks up a pot plant and throws soil across the room
  5. I shout (rubbish reaction but sometimes it happens)
  6. Taz is delighted with the dramatic reaction and throws more soil
  7. I realise I haven’t made my point enough so pack up the Playdoh to show consequence (knowing how ridiculous this is – Taz will not equate these things)
  8. As I am bending down to do this Taz, distressed that her favourite game in the world is being taken away, tears a handful of my hair out, I scream in pain (it was so painful). This time she does looked shocked.
  9. We both cry.

The fact I know why this happened made me feel a little better (especially as I could blame myself) but I still cried for a good while afterwards at the situation and the unfairness of it all, for Taz and all of us. The face scratch was a ‘classic’ last night – me leaning into Taz’s space to take her out of her car seat – an instant reaction to someone in her personal space which she struggles with. Unfortunately I had not cut her nails this week so she did break the skin.

I was with a friend this week who has a gorgeous little girl very like Taz and we were both in hysterics when we realised that we both employ ‘exaggerated Makaton’ (signing for learning disabled people) when out to send a clear message to others that our child has a learning disability (so stop f-ing judging).

Generally when I explain to people in the park, or soft play, or swimming, or library why I am hovering my arm over Taz’s as she sits next to their child, parents are very understanding and usually reply with a well-meant comment such as ‘oh honestly he’s just as likely to do the same’ (which I take comfort in for now but know won’t wash when she’s 16…). Recently however I had my first real ‘parent shaming’ experience and it really, really hurt.

Taz was at the park at the top of some slide steps (it was one of those slides built on a  mound of earth so I was standing next to her). A boy of about 2 climbed up behind her and she did not want to share the slide (she tends to claim whole pieces of play equipment as ‘mine’ when on it). She lifted her foot to ‘guide him away’ rather than a full force kick (I would say in the manner of a guiding a cat away from a puddle of cream). It could have been a kick though, let’s be honest here. It was towards his face – she did not make contact with him. I immediately intervened (complete with flamboyant Makaton as described earlier) and said a very firm and audible ‘no’, checked that the little boy was ok and said sorry to him. His dad’s response was: “Well that’s not very nice”. Completely understanding this reaction I explained she has a learning disability and profusely apologised. His response was to shrug. I said “No, no you don’t understand, she can’t help this, her brain does not work properly, she has hundreds of seizures a day.” Another shrug. Cue lots of OTT ‘are you ok’ / frantically examining his bewildered boy for any marks from the non-contact incident before marching off. I felt awful. Taz’s auntie Sasa was with us and I was genuinely worried for Park Man’s safety as she witnessed this unfold. Having someone there helped enormously and reassured me there was nothing I could have done. It still took me around a week to get over this – here is what went through my head: ‘Was I watching closely enough?’; ‘Did I react fast enough?’; ‘Should we stop taking Taz to places like parks now?’. That last point is the problematic one and highlights the ultimate impact of people’s ignorance – exclusion. Park Man was not a bad person (despite being a bit of a twit) – he was simply ignorant – had no knowledge of learning disability and interpreted Taz’s actions as ‘bad behaviour’. One thing I never asked myself however was ‘is it my parenting that made her do this?’. I know it’s not. I know that I have one child who has never done this and never will and I am the same parent to both. I could not have helped her doing it in the first place. Although we are constantly working on her behaviour, I know that after continuing to toilet train her for 2 and a half years, that this isn’t going to happen overnight.

It’s not just stranger’s reactions. Children who know Taz will often be wary of her but most will continue to try and engage if they can (parents tend to be brilliant here and explain the issue). It is hard to describe the pain you feel when other children literally back away when your child goes near them. I suppose it’s simply a very deep sadness. I get it though, it’s a totally normal reaction. Taz’s big sis however seems to just brace herself and keep going back for more hugs – heart-bursting stuff. 

The judgement is the next hardest thing (sorry, I am still going, turns out this occupies quite a big part of my head). Like most people I worry too much about what others think and am a people-pleaser. If you can imagine feeling at your most judged because you are trying to do everything you can, it’s not enough and you KNOW the other person is watching (often people just stare in fascination and watch what I do – I don’t think they know they are doing it) – I am thinking that they are thinking ‘I wouldn’t do it like that’. They probably aren’t but I have never felt more judged than in these situations. It is intense. When Taz hits out – I tend to say a firm no or ‘hands down’ (accompanied with sign), remove her from the situation (saying sorry to the person), explain to her she has hurt them and turn my back (removing the attention element). She tends to grin – this is the hardest thing when it comes to managing this – she doesn’t seem to care. That also hurts to see. It isn’t that she likes to hurt others, more that she is fascinated by the often dramatic reaction – a shout / a cry – noises that for her are a novel and sensory experience.

I often wonder if I wore a FitBit how much higher my heart rate would be when Taz is near others and I am helicoptering over her ‘just in case’. I can feel my heart racing at times. Not a very relaxed state to be in on a trip to the park / soft play.

We continue to work on Taz’s behaviour and I hope one day that it will fade away but I also know it may not and that many parent carers are dealing with violent and challenging behaviour in adults (I am always reminded of the scene from Love Actually with Laura Linney and her brother, her calm technique when he goes to hit her shows this is a common occurrence for them).

Please help spread the word about this. We need more understanding. It really isn’t her ‘fault’ (or mine, or her dad’s) and it really isn’t ‘bad behaviour’. In the meantime we continue to keep her nails short and be ready to jump on a situation like some kind of wild-eyed security team.

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7 comments

  1. Reblogged this on The Autism Diaries and commented:
    I felt every one of these words. A powerful blog from Life with a Livewire. I used to have a Fitbit, and yes my heart rate was higher when out and about with kiddo. Not because of him, but because of ignorant parents. I dont wear it anymore.

    Liked by 1 person

  2. Just so powerful. Thank you for sharing how life is for you and many other parent carers. It made me cry – but kind of good tears. Tears you can’t stop because your words speak a painful truth. You are doing a brilliant job with Taz and giving such a real insight into your world will help people understand. Boy life is challenging and sadly people don’t get it unless they’ve walked in your shoes. Full of admiration – your blog is simply brilliant.

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  3. Can understand how you are feeling because you’ve written it all so well – you just need to hang on to the knowledge that you are doing your best. There are other parents who have no clue about the extra challenges and all we can do is try to educate them x

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  4. Re the judging: of any onlookers, 50% would think it great what you did. And the other 50% would think quite the opposite. Forget ’em!!! All you /we can do is what strikes us as best at the time.

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