Communication (part 1)

Statement 1 – ‘Well, actually, if you had a time machine you still couldn’t travel to the past or the future, because it would still be the present for you.’

Statement 2 – ‘You don’t care if he hits me!’

Sometimes I find it hard to believe that the six-year-old boy who can use the logic of statement 1, can also fling statement 2 at me in a rage. I actually sat down to write about Pudding’s speech and language skills, but as soon as I typed the word ‘communication’ it was Twiglet that sprang to mind.

I know I can’t be the only mother to have issues around communication. He is a fabulous boy – bright and funny – but he does drive me to absolute distraction sometimes. Almost always it is to do with Pudding.

I know I’ve said before that on the times we have been out together without Pudding there have been no arguments, tantrums or whatever. And he has said recently, ‘Pudding gets more attention than anyone!’ To which the honest answer is, ‘Yes, you’re right. He does.’

IMG_7574He loves his brother dearly, that much is certain. But it’s a strain on anyone if they get hit often. Randomly. For no reason. And its not really surprising that he snaps and screams in Pudding’s face or hits back. I try to get him to respond in a consistent way, as that is the only chance we have of getting Pudding’s behaviour to change. So it is frustrating when Twiglet can’t do that. And yes, I probably start sounding pretty sarcastic when I try to intervene and that is when I get the hurtful comments shouted at me.

I am pretty honest with him – I tell him when what he has said has hurt me, and he does see me cry. Things have actually been a lot better over the last few weeks as we’ve addressed some of the other flashpoint issues of Twiglet’s behaviour (the potential reduction in gaming time at the weekend has made him much more willing to carry out his jobs!). This seems to be having a knock-on effect on how well he manages his temper at other times too. And of course, the more aware I am of my own reactions, the better I deal with him.

I always worry though, about whether I am getting the communication right regarding Pudding’s condition. We have a fantastic book that has helped him to understand MPS and the sort of effects it has on children. So he knows quite a bit about why his brother is different but then there is also the biggy, the elephant in the room. We have never talked to him about life expectancy.

The clinical trial may mean that we never have to. Even if that is not to be, we have years before we need to have that discussion. I hope. But it means that there is always something I’m keeping from him. I can never truly say why I may be more tired or stressed than usual.

I never tell him, ‘Your brother may die’.


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