Mary: “I couldn’t live without my diary. If you saw it, you’d see why. It holds us together. We’re so busy, busy, busy between hospital appointments (both of us), the farm where he works, college, dancing, football, psychotherapy, theatre, haircuts, dentist….it’s just mad. I fit round James really, as I’m purely his carer.
I help run the “Five-a-side Fun” football team he plays in, I take him to dance which he loves (when he gets there – sometimes it’s a struggle on the way), I take him to the local Rare Breeds farm where does all sorts of things like cleaning the animals out, grooming, feeding, and caring for them in general. He likes the horses, the shire horse especially. He’s not overly keen on the chickens. They peck. Two days a week, he’s down there. He’s the life and soul of it.
Obviously he’s got Down’s Syndrome plus hearing difficulties, speech difficulties and ADHD but he’s not a label. He’s just him. I hate the word normal. So I made up my own funny word. He’s diff-abled. Not disabled. We’re all diff-abled in one way or another.
Sometimes people come along to watch the football, point at one of the players and say: ‘What’s wrong with him? What’s his disability?’ I tell them, ‘They don’t have disabilities, they’re just part of our group. It’s more about what they have in common – playing football – than what sets them apart. They’re normal people with little additional things about them. James has needs – yes – to be loved, to be nurtured, to be encouraged.
He’s had a recent diagnosis of psychosis last year which came totally out of the blue. It just came – bang. We dealt with it. We had to. He said he had people in his head telling him to jump out of the window, so the first thing I did was ring the doctor and the second thing was going to Screwfix for a load of retainers to put on the windows. Luckily, I’m handy at DIY.
But it was really bad while we were struggling to get the drug dosage right for him. He said he didn’t want to go to dancing anymore, which has always been his best medicine. (I don’t know where he gets it from. I dance like a penguin.) So I took him there anyway but promised he didn’t have to dance if he didn’t want to. He could just sit and watch. Gradually the shoes came off, then the socks, then he put one foot on the dance floor and it was like he was teleported to a different place. ‘I put my foot on the dancefloor,’ he told me later, ‘and the voices went away”.
It made me fully realise how horrendous it must be for him. The voices never say anything nice. They swear at him and only ever say nasty, derogatory, dangerous things. Sometimes it sounds like 20 people all shouting at once. It’s taken a year, but things are better now.
We walk with Stepping Out when we can. When there’s space in the famous diary. Sometimes, if James is busy elsewhere, I can do it on my own with my camera. I love photography. That’s my best medicine – which I need because I have a heart problem that nearly killed me two years ago and I have to manage it carefully. I struggled with anxiety after the diagnosis. I spent quite a while going to bed thinking: am I going to wake up tomorrow? And I’m not thinking about me. I’m dead and gone. That’s not the problem. It’s what I would leave behind. It’s James.