6 June 2017

Dealing With Very Challenging Behaviour

My blog post on Living With Very Challenging Behaviour had a huge response, in fact it had the biggest response that any piece of my writing has ever had. I had parents messaging me and thanking me for my honesty, I had people thankful they'd found my page as they were going out of their minds with the crippling loneliness that normally accompanies adult carers of children with very challenging behaviour. Along with those messages of thanks and encouragement they were normally ended with....

 "So how do you deal with it?”


So how do we manage?

Well to be honest sometimes we don't. I'm not superwoman, and I'm no saint! Sometimes it gets too much and life feels like it's crumbling beneath my feet with no way to mould it back together again. Other times I could high five myself so much that I fear I would make myself look insane.

Step one is to try and reduce the anxiety. We reduce the anxiety by completely taking away all demands, we give her choices, and ask her to make the decision of what she wants to do.

I found I had an amazing skill after having Lola, I became so in tune with her it was like we were fused as one, having the ability to know what she wants or needs with a tilt of her head - based on careful evaluation of surroundings and events was crucial. 

When she was born the bond between us was instant and very intense.

I was very aware that I was the only person that knew what she wanted or why she was upset. Whether she was uncomfortable or hurting and looking back on her early months makes me wonder if I intuitively knew she hated clothes. I was always adjusting her clothes, making sure her socks were always over her trousers and keeping her trousers from sliding up, always pulling down her tops, and tucking them in, In fact she rarely wore clothes, she was in baby grows for probably about two years. On the very rare occasion I went out, I would be so anxious that we simply would not have a good time at all. You see she cried, and screamed so loudly when i wasn’t there that she was sick.

As she grew, our bond intensified even more and this made me edgy. I was constantly wondering when she was going to crack, trying to avoid situations that would put pressure on us, driving the one minute walk to nursery because it was far too dangerous, and stressful to walk with her.

I know when something that would normally make her squeal with laughter would make her scream in pain. I can judge her likely reaction in an instant. I constantly find myself giving other people the 'look', or a nod and shake of my head, as to leave whatever it is alone. Sometimes I intervene and change the conversation around so that it doesn’t turn something that Lola feels like she has to fight for. My ability to read Lola’s subtle clues put a lot of pressure on the family. It really did make her look spoiled and naughty but if there was a situation that someone was dealing with that i knew would push her over the edge, I HAD to intervene.

The result of this was family conflict. Between me and a lot of people, including my other children. I had to protect her and shield her from things that others didn’t believe was an issue, or couldn’t understand was an issue. Of course I had a duty to protect my other children too, and this is why I cared so much that we reduced demands on her, that we rallied around to make her comfortable and give her what she needed as soon as she needed it, because if we didn't then these situations of control and violence would quickly escalate in a direction that no one wants to follow. We had no training, we had no idea how to deal with issues correctly and in unity because we were told she was an ‘extreme version of normal’ We were flying solo, and we were winging it. And in the beginning we were definitely not on the same page. As we are now.

This is what we mean when we say "walking on egg shells" the ability to always be aware, always be understanding, and always know when now is not the right time to ask her to clear away her toys! Or brush her teeth. Or pick up her school clothes. These kinds of things have to be done systematically, carefully using very precise timing. My daughter's anxiety doesn't leave much room for intentional manipulative behaviour with the intention of "getting her own way" Sure it looks like that - and believe me sometimes I even struggle to cope.

So when people ask me, 'why I am doing this', and 'why I am doing that' - or should they try and take control of a situation because maybe they think they know best, i am very firm on taking control of my daughter. My main priority is keeping her calm and reducing her anxiety to a level that allows to try and have a relatively calm family life.

It is exhausting, and overwhelming and it certainly takes a toll on our whole family. Having autism with a presentation of demand avoidance leaves Lola with little ability to comply meaning that her diagnoses are leading her, the captain of the ship, and the president of our home. So yes, we make many allowances for her, we let go a lot of things that as a parent you would not instinctively want to.

Of course I understand, of course I am supportive, but I am after all human with my own sanity limits. There is only so much one person can take and when the challenging behaviour is only managed by one parent it can be consuming. She is anxious. She needs control. And she will resist any form of demand by way of neurological reflex response to gain that control to reduce her anxieties to allow her self to conform. 

For this reason we make barely any demand of her and in turn her anxiety is reduced, but this comes at a cost, and one that the whole family has to pay for on a daily basis. She is reliant on us all to have the ability to manage her the way she feels most comfortable. My other children are slowly coming to terms with Lola being captain of this ship. Sometimes i feel like she is sinking, whilst we, as a family bale out all of the water, once again supporting her in the right direction, gently guiding her to the helm.

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  1. Oh yes, totally know the walking on egg shells constantly and how exhausting that is! The anxiety is definitely lessened by us parents who are in tune with them though - as you say, it's intuition really and it takes a long time to build up that full picture of what does and doesn't cause anxiety - every child is different of course! Great post x

    1. Thanks Steph, we can only try eh? xx

  2. Thank you for the heartfelt and honest post. I can relate to walking on egg shells and as Steph says it does get exhausting. I hope things get a bit easier and calmer xx

  3. Always walking on egg shells - just beginning to not be able to do this a age 14.... Love & light to you.xx

    1. Thanks Martina, and you too x