LB was born in a bath at home. A messy old biz but he came out happily and loved baths and swimming from that point.
I always loved baths too. A bath every evening, for at least an hour, starting with an academic article or the paper and then a trash read. Richard and Judy Book Club. Glossy mag. Perfect. Glass of wine and peace, apart from kidlet interruptions largely managed by Rich. In our old house LB’s bedroom was directly opposite the bathroom. I can remember for about a year, when he was six or seven, and he would constantly stand by the stairgate at his bedroom door and ask “Are you my mum, mum?”
“Yes, of course I am. Get back into bed LB”, I’d say. Over and over again. It was a mixture of baffling irritation. Years later, I interviewed a mother who said that when her (autistic) daughter began to learn categories of things, she wanted reassurance that she had got the right things in the right category.
‘Awww’, I thought, on the train home from the interview. ‘LB just wanted to check that I was his ‘mum”. So simple when you know. These dudes don’t come with manuals though and support tends to overlook these kind of things. A small suggestion for psychiatrists/paediatricians/educational psychologists…(well pretty much anyone in the learning disability field); an early focus on helping parents to understand their children better may be more productive than framing them in deficit terms from the get go and trying to reduce ‘unacceptable behaviours’. But hey ho. Right now I can’t see how the rot and accompanying malaise that riddles health and social care provision for learning disabled dudes will ever be treated effectively.
Anyway. Back to baths. Well they’ve pretty dried up in our gaff. I haven’t had one for over seven weeks now. Another fucking loss, albeit on a tiny scale. This means I’ve gained around 9-10 hours a week of time. Add to this the time I no longer spend looking after LB. The time I’ll no longer spend in meetings about him, on the phone ranting, complaining, filling in nonsense forms, trying to organise support, doing direct payment returns and the like. I’ve probably gained about an extra day a week.
What to do with this time? Here’s where I’m at;
- Attempting to transform myself into a lean, mean fighting machine with a funky exercise regime. Nah. Unlikely.
- In the pub last night, watching men with their treasured sticks (bats?) concentrating intently on knocking down some white thing, I briefly considered taking up Aunt Sally. I could even join a local league team. Nah. Suspect I’d be a bit too aggressive at the moment. At risk of randomly violent stick/bat action.
- Rich has pretty much decorated the whole house in the last few weeks, love him, so home improvements are out.
- I’ve thought about writing a book about our experiences but whenever I move from ‘blog’ to ‘book’, I come over all Mills and Boon. Not good.
I suppose really I just want to be back in the bath. Book in hand and LB bouncing up and down at the door. Asking me if I like Irish lorries or when he’s going to Trax again.
Don’t it always seem to go that you don’t know what you’ve got till it’s gone ? My observation as a recently bereaved parent is that I am engaging with the world in a performative way. I’m playing a role. It’s called ‘seems to be coping’. Alongside this is the genuine feeling that my family do still bring me joy and I do feel supported. Acting -toughing it out – is hard work. Love nicki
Sent from my BlackBerry smartphone from Virgin Media
Your blog is already the book – publish it when you can face it and don’t edit out any of it. It’s raw, painful, heartening, funny and all those other things. It makes me wish I’d met LB and others like him.