Wednesday, 30 January 2019
Time and Space for Lucy
Siblings of children with severe autism need some space to call their own, and some time alone with one or other of their parents, too. (Rhiannon) Lucy was no exception and here she is on a much-needed day off from school, captured by me in my favourite medium and style. Beneath is an extract from 'Your Life as I Knew it' which gives one example of why she needed a break sometimes. My gratitude to her - and to the friends who helped us - is truly unbounded!
Maeve is here. Mum is laughing again.
'And now my bed is being held up by a packing case and I keep sliding off during the night, onto the floor. I'm worried, because he still turns the bed upside down and it's going to break completely very soon.'
'You need locks on your doors,' Maeve says.
'Have you seen the price of locks? And then there's the cost of fitting them. Lucy's already asked for one.'
'Does he turn her bed upside down as well?'
'He did – maybe he still does. She hasn't said anything about it.'
Huw does turn her bed upside down. Every day. But it is always the right way up the next day. There is dust and bits on the floor when Huw plays tunnels. The hole in the wall, where the bed falls, is getting bigger and bigger.
'You can't carry on like this.'
After Maeve goes, Mum puts the sofa back up the right way, and then they go upstairs and put all the beds up the right way. Mum's bed is very, very wonky.
The phone rings. Mum answers it.
'No, of course I don't mind,' she says. 'Really? He's coming now? …. You are an absolute star. Thank you!'
Soon a man called Bert comes to the door with a bag. He goes up to Mum's bedroom and there is the sound of banging. Huw goes to look. Bert is hitting the bed with a hammer. Mum comes up and says
'Thanks for this.'
'It's OK,' says Bert. 'Maeve is babysitting for me in return.'
'Well, it's a great help,' says Mum. 'I was losing sleep sliding onto the floor every night.'
After Bert goes, Mum talks to Huw. She says he must NOT turn her bed upside down ever AGAIN. Huw doesn't, but he carries on doing it with his own bed – and Lucy's.
'Mum,' Lucy says one day, 'Mum the hole in my wall is really big now.'
Mum goes to look in Lucy's room.
'Oh, My God! Has he been turning your bed upside down all this time?' she says.
'Yes,' says Lucy, 'and it's been a real pain.'
'Why didn't you tell me?' Mum says.
'You have other things to worry about,' says Lucy. 'Anyway, you are going to put a lock on my door soon – aren't you?'
'Yes,' says Mum, 'Yes, of course.'