Today I watched some video clips that the OT had picked out from our last session with Big. They totalled three minutes long. Three minutes out of an hour.
In those three minutes, Big allowed me to help her, she allowed me to explain something to her and she let me touch her. All amazing things.
But it just brings to the fore of how much time she’s not able to do that. For fifty seven minutes out of the hour, she spent the whole time actively not being in my space and actively not allowing me to help her. So in a twelve hour day, she has thirty six minutes where she feels safe enough to let me help. That’s a lot of time that she feels unsafe.
I realise that being at the OT is a different space and that things might be slightly different at home but essentially my big girl spends an awful lot of time actively trying to avoid help. As the OT described it, ‘She’s independent to the point of it hurting her.’
The OT was very quick to point out that for the whole session I was doing everything that I need to do and that when Big is ready to accept it, the help is there. But it was so hard to watch.
Trying to reframe this as, ‘for three minutes she let me help’ rather than ‘for fifty seven minutes she didn’t let me help’ is hard. It’s hard watching someone you love struggle rather than ask. It’s hard watching someone that you love walk in as big a circle as she can to avoid being anywhere near you. It’s hard watching someone that you love battle on rather than listen to a suggestion.
As I said to the OT, once again, it reinforces how hard daily life is for Big. How she has to overcome so much to do anything and yet she does. Everyday she gets up and she gets on. And yes, I wish more than anything that I could help her, to make things even slightly easier. But ‘for three minutes she let me help’ and as ever, the hope is, that slowly, those three minutes turn into something longer.
The best bits
The girls made a ‘rainbow world’ this weekend. They stuck lots of pieces of coloured paper together, drew a road on it, lots of houses and cars and some people. They spent ages working on it and it looks fab.
Little had a birthday! She got a skateboard and is so keen to go on it. ‘Mummy, you take Big round the big loop on her bike, me and daddy are going to stay here and work on my jumps.’