The life I never expected

Way back... Way back when... Way back when I didn't know how disabled Hugh was or would be... Way back when I didn't realise how destructive his seizures were... Way back when I thought the doctors could fix things... I thought,  I thought that once we'd sorted the epilepsy everything would be better, I thought that once we'd sorted the epilepsy I'd have to struggle to come to terms with having a child that needed to go to special school.
I didn't expect to have to come to terms with having a child that would be unlikely to live past his teenage years.
I didn't expect to come to terms with having a son that hardly knew I existed.
I didn't expect that, even once the terrible times had past, the devastating consequences would remain.
Hugh's epilepsy has robbed him of a future. Hugh's epilepsy has robbed us of the child he might have been.
His really bad seizures are less often than they used to be, And for that I am grateful, But they cast a long shadow, And I ne…

He's not taking this lying down!



"Ha ha, fooled ya!"
Despite his happy demeanour, Hugh can at times be a bit – how should I say this – challenging/ grumpy/ stubborn?  Suffice to say, it’s not smiles and giggles all day long.  Unable to communicate verbally, Hugh has for some time now, been using his own tried and tested method of making his views known.  When he’s content, happy and generally getting his own way, he is full of smiles.  Yet if you try to get him to do something he dislikes, for example physio he’ll put on his best fake cry and feign sleep.  The fake cry can be quite convincing and at first sound can appear like he is genuinely distressed – the absence of tears though is a pretty good give away.  The fact that it stops as soon as he’s got his own way is also a sure sign he was having us on!  For example, if it’s too noisy when his brother has friends over, he’ll cry and rub his eyes like he’s tired; once taken to his room and put to bed, he’ll immediately start laughing and rolling around!  

 

He’s cleverly working this trick in lots of different scenarios and for the most part I am impressed with his ability to convey his feelings and get what he wants.  Recently, however, he’s taking to using it more and more often.  He can be quite wilful and stubborn (no idea where he gets that from!) to the point he can make himself sick in frustration.  I ‘get’ that he’s trying to say “NO!” and “I’m not happy about this” or “I don’t want to!” and that for him, this is his only way of saying that.  I get it, I do.  But sometimes, you just have to son.  If Hugh had his own way, he would happily spend his days in his pyjamas, in the house, rolling around the living room floor playing with balloons or lying in his bed watching his bubble tube.  (Can’t say I blame him to be honest!)

 

I was thinking the other day that it’s not dissimilar to that stage of development where babies/toddlers say ‘no’ and ‘I don’t want to’ to pretty much everything.  Hugh’s pushing back against anything remotely unfamiliar.  Yet, how do you reason with a profoundly disabled, non-verbal child?  How do I make him see that in some instances, regardless of how much he protests, he’s still going to have to what I want, be that getting dressed or lying down for an x-ray? Mind you, if I remember correctly from Sean’s demon-toddler days, it wasn’t so easy to reason with him either.  For now, we’re working through it, pushing him when we need to and reassuring him as best we can. 

 

Last week, he got star of the week for lying down to get changed for swimming at school.  A big step for the little monkey that will happily roll around the living room floor but point blank refuses to even lie down at school! So I’m pretty proud of him for that.  Small steps and all that  ...
 
 

 

 

Comments

  1. A bit of a double edged sword for you. I find my 6 year old, extremely verbal son still a challenge when trying to get him to do what I want rather than what he wants to do! #SSAA

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  2. Well done to Hugh, that's a lovely achievement.

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  3. I'm right there with Hugh pyjama days are the best ;0) We get the fake cry from Ethan too and now he even looks at himself in the mirror as he does it lol. What a fantastic achievement for him, I do love those star of the week awards. Little E is going through the toddler 'no' issues at the moment, something we have never experienced before so we are learning about this stage too x

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  4. Well done on the "Star of the week" award, fantastic! Hugh sounds like a lovely character with his fake cry and yes, we're all for pyjama/onesie days too here!
    Thanks for linking up with #SSAmazingAchievements

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