by Alison White
‘Did you see Dad go in, where’s he now?’ I ask Tasha and Jack who’ve appeared with their friends Zak and Jamie by our side on the wall. They both stretch out their arms and point down.
‘There he is,’ Tasha says.
Greg’s already out of the sea and is standing with a towel around his waist and a puffy coat over his torso; he is mingling in the crowd on the slipway chatting to any and everyone, as he does. So I wheel you back down the hill and into the friendly crowd to chat with friends and neighbours, and Jamie’s mum Elaine kindly crouches down to look at your maps with you.
The Christmas and New Year holidays are over and I have to force myself to leave you all again to return to Edinburgh.
I’m home at last in the week as well as weekends. Natasha has her GCSE exams coming up which I feel dreadful about, she’s needing help and support with her work, and Greg needs me to take over fast – he’s got work to get on with. He’s been designing a park for the Commonwealth Games in Glasgow. This creative commission is a big piece of luck to have come our way on the back of our reputation from years ago in Scotland. Now down in Wales any design work has mostly dried up. The job came in last summer and it could not have come at a better time for keeping our heads above water. So the moment that I get home Greg is off to Glasgow to check the construction work is being done correctly.
Unsurprisingly the house is a tip; there are piles of paperwork and washing to sort out, all your care needs to see to, a review to attend at your school, a hospital appointment with your paediatrician, the tax returns to finish, and the list goes on and on.
It is late February and my younger sister Jenny is coming down to visit us. It will be some wonderful light relief.
Jenny had a baby in November, a baby girl named Lyra, and she’s going to come from Manchester and visit us all with the new baby. I can’t wait to see them both. Tasha’s excited too but Jack’s not impressed. He finds babies annoying, he tells me.
And what will you make of the baby? You are used to having Jenny all to yourself; it will be a bit of a shock now she’s become a mother.
You come down to the train station to pick them both up. Jenny wisely sits in the back of the car between you and the baby. She has to protect Lyra from your swipes on the journey back to our house. When we get home Jenny carries the baby into the house and I balance you up onto your feet out of the car, tuck your maps under my armpit and step-walk you into the house too.
Jenny’s settled herself down on the sofa and has Lyra in her arms.
‘Hey Louis, what do you think of the baby?’ Jenny asks you.
Right on cue you give her your answer, with an enormous wide smile on your face. You’ve not forgotten Colin’s expression.
‘The baby’s a pain in the ass.’
You’ve started to hit your head hard and, like all your compulsions, it has been building for a number of years, but whereas before we could live with it (it was only a light tap with your head on a table) now it’s a full whack. When you wheel yourself up to the table I quickly put my hand down over the wooden edge. You bring your head down hard on my palm then you lean your head from side to side trying to hit the sharp edge while I cushion each thump. Eventually your urge subsides and you stop, but I can’t protect you all of the time. When you go to the toilet I hear to my horror a ceramic clunking sound as you head-butt the sink, and you’ve begun to raise your fists up to your head to hit your forehead with your knuckles. When anyone sees you they tell you to stop and you scream and respond by hitting yourself over and over. So we’ve all gone silent and instead we try to distract you.
I’ve found foam matting and have cut it into squares and stuck the pieces around the house as safety precautions and I’ve bought lots of headbands and inner boxing gloves to wear on your hands. These are padded at the knuckles to protect your head from your fists. It’s not ideal; I know this new look will stick and I miss the old you, but it’s far too risky not to protect you at the moment.
You love all these solutions. You take a foam mat with you everywhere and you wear your headband and gloves all day long and only agree to take them off at night-time. As I head for your bedroom door to turn off your light I hear the sound of your fists as you whack yourself a few times as you lie there.
In the morning you sit at the kitchen table having breakfast. I see you lift up your headband, whack your head on the edge of table then quickly pull it back down.
‘There’s no point in wearing the headband if you do that,’ Greg tells you firmly and you hold onto the headband tight.
‘I’ll take it off you.’
‘No, no, no,’ you call out.
*
And today I’ve found someone who may be able to help with your compulsions. It’s Jack Woods who runs the disabled basketball class that you go to. Jack’s noticed your increased hitting.
‘What’s up with Louis?’
‘It’s a compulsion. It’s best to ignore it or he does it more.’
‘Right, but do you know why he’s doing it? It looks painful.’
‘I think he’s frustrated.’
‘Maybe I could help, I do music therapy.’
‘You do?’ I’m incredulous. ‘Louis learnt to speak through music.’
‘Oh, right. Well, I’d love to help in the future if I get any time.’
*
Jack Woods calls to say he’s found time for an hour of music therapy one evening a week. He comes over to our house with a drum and a stand. He talks to you in your room on your own and we hear drum beats as you compose your own song, beat it out in rhythmic time. I hear crescendos in the music and then it goes quiet. Jack’s explaining how to meditate through deep breathing. Our house has become hushed; you’ve briefly gone silent and still.
This could work.
This is what you need in your life, others who can befriend you, understand and help you as you go into adulthood.
I’m looking forward to my lie in. There’s no reason for me to have to get up early today because your school has an INSET day. As I went to bed last night I made a mental note. I’m going to try to block out your noises from downstairs for as long as I can; if I’m lucky I’ll not have to get up until nine to dress you and give you your breakfast. Hopefully you’ll get preoccupied on your computer and I might get away with it. I’m tired tonight.
I’ve left my mobile phone on a chair that holds a light by my side of the bed, I’ve turned off the ringer but I’ve not put it on silent. At six thirty it buzzes. Oh what? It buzzes again. I can hear your quiet whoops from beneath the floorboards, hear the creak of the wheelchair. The text is from Sue Grainger, someone I know a little.
‘R u aware that Louis has posted your and Greg’s pin numbers on Facebook?’
What! I bolt upright. Greg groans, ‘What is it? You’ve woken me up.’
I’m out of the bedroom and down the stairs and into your room. You are sitting in your wheelchair by your table looking at your computer. As I open your door I see your finger press a key and a page on your screen disappears.
‘Louis, what are you doing?’
You are briefly silent, then you pull your pyjama top out of your mouth. ‘Nothing,’ you say.
‘Yes you are. I’ve just had a text from Sue Grainger. You’ve put our pin numbers on Facebook.’
You chew your pyjama top and stay silent.
‘Louis? Have you done that?’
‘Yes.’
‘Well, you mustn’t, you know that. We need to take them off immediately.’
I don’t do Facebook but lots of my family and friends do and it is great for you. It keeps you occupied; you send people messages and people send nice messages back. I don’t know how to navigate around the thing.
‘Louis, you need to show me what you’ve done.’
You’ve already reopened your Facebook page: I can’t see anything there.
‘Have you deleted it?’
‘Yes.’
I go back upstairs to the bedroom
, text Sue. ‘Thanks for telling me. Louis says he’s deleted it, has he?’
I slip into bed and close my eyes, the phone buzzes, I look at the screen: ‘No, it’s still there.’
I’m back down the stairs.
‘Louis, it’s still there, show me,’ but I can’t find it on your screen. You seem to have deleted it from what I can tell but it is still posted as a newsfeed to all of your friends. I call Jenny; it’s gone seven now and she’s driving to work.
‘Jen, Louis’s put our pin numbers on Facebook. How do I get them off?’
‘Oh shit, has he? I’ll call you when I get to work.’
Jenny takes me through the paces to delete it completely from the system.
‘Yes,’ Sue texts me at eight. ‘It’s gone now.’
*
I’ve given up on sleeping. Greg’s disappeared from my side and has gone downstairs to make himself a cup of tea, but I lie up here contentedly resting, stretching out my limbs in the bed. I know if I get up my footsteps will trigger you off, you will start to call out instructions for me to get you dressed. I want a little bit longer of this peace. Your computer will keep you occupied for a while longer I’m hoping.
I can hear certain sounds beneath me so I’ve guessed what is coming; this is your new favourite game when you look at your screen. You’ve turned the sound up, this is always a sign, and yes, I am right, you are on YouTube. I can hear the creaking and rumbling, the clanking of metal, distant voices chattering and then there’s a silence, a long pause, here goes, you are shouting, screams echo out from your room, happy screams from others in fear and the sound of the wheels whooshing down across metal. Your voice is deeper, you are shouting, ‘Ahhhhhhh, ahhh, ahhh, ahhhhhhhhhh,’ and your throat sounds hoarse, then you switch to your new favourite cry, you shout loudly at the top of your voice, ‘Stop the ride, stop the ride, stop the ride.’
Thank goodness the campsite is not open right now. I do sometimes wonder what our campers think as they lie in their tents in our field. What do they make of the distant strange noises that sometimes drift out of our house?
I decide to get up.
As my feet touch the floorboards you stop shouting ‘Stop the ride,’ and call out, ‘Mum, Mum, Mum, get me dressed,’ and I hear your wheelchair turning to the bedroom door as I walk down the stairs.
This is the fifth social worker in the last eight months: they keep leaving. They all say the same thing but only after I’ve had to describe our situation to them in great detail. Then they agree that I’m using the direct payments awarded wisely. The payments are not enough to go round, there’s a shortfall and I make up the difference with the help of a trust fund set up by your great-aunt Alison with money from family and friends who care about you.
The direct payments go on exercise and activities like physio and swimming. After explaining to each social worker they always agree that what we are doing is necessary for us all. That without this exercise you’d likely be in a wheelchair permanently, which would increase your care needs, that your obsessional behaviour would get worse if you had nothing to do.
I find these meetings exhausting and I’m worried. You are about to turn eighteen and none of the social workers I’ve seen so far can tell me what this will mean. Will they take this current funding away? And what about the overnight respite we get one day a week, will it continue?
I’ve been phoning and phoning the social work department to ask what will happen, and each time I’m told that our last social worker has left. Now today I have a meeting with our latest assigned social worker, called Felix.
Felix walks into our kitchen and my hopeful heart sinks. He’s looking around assessing the way that we live and the way that he does feels intrusive. The downstairs of our house consists mostly of one long room and from Felix’s chair in the kitchen he can see the wood burner at the far end of the living room, the sofas and television, the filled bookshelves and into Greg’s music space, a table and instruments scattered, and then into the kitchen where Greg’s wall of favourite pictures are pinned.
‘That’s a large bag of rice,’ Felix says.
‘I’m sorry?’
‘That’s a large bag of rice you’ve got.’
Oh no, is he going to be useless?
Felix has turned to look out of the kitchen window. ‘Who lives in the caravan?’ he asks.
‘We haven’t got a spare room, it acts as somewhere for visitors.’
‘You have apples on that tree.’
‘Yes, we do.’ I take a deep breath, this man is stalling, he seems as unsure of being here as I am.
‘Can we talk about Louis and his needs?’ I say directly. ‘I’m worried, really worried about him turning eighteen in two weeks. What’s going to happen to the respite and the direct payments then? Will they continue or do they suddenly stop?’
‘Ah yes. Well, the respite will finish. There’s nothing for adults.’
I take an intake of breath. ‘Nothing at all?’
‘No. There used to be but it’s been cut, there’s not any more.’
Felix’s narrow face is pale. He raises his fair eyebrows and taps his pen on his diary.
‘So how do adult services work?’ I ask him.
He shrugs his shoulders.
‘Well, I don’t know the answer to that. You will be seen again by an adult services social worker. I’ve got to write a report on you now, sign you over. You should have been seen by the transition social worker but she’s been off sick for the last six months. We’re a bit behind.’
‘So where does that leave us now?’
‘Is that a saxophone?’
‘Sorry?’
‘Is that a saxophone you’ve got there?’
Oh bloody hell.
You are excited about your upcoming birthday. You tell us you will no longer need Judy, that instead you will be coming out with us, you will be coming down to the pub you say gleefully, you are going to be an adult so you will not need looking after at all any more. I don’t know where all this knowledge has come from about being eighteen but it takes me by surprise that you comprehend its significance so well. I’m having trouble knowing how to answer you without dampening your enthusiasm and joy.
‘Yes of course, Louis, you can come out with us sometimes, but not always. Sometimes me and Dad need a bit of time on our own. It’s not really to do with age.’
‘But I’ll be eighteen,’ you respond.
‘Of course I’ll take you out to the pub one night,’ Greg answers with a chuckle. And that’s all you want to hear right now.
EIGHTEEN
Today it’s your eighteenth birthday.
A year has passed, a year that has felt like a lifetime condensed into one. A year that has stretched us further than I realised we could ever be stretched.
The intervening year is held as balls of lead in my head and my heart. I’m peppered with bullets and I don’t know how to begin to explain what’s occurred.
Today it’s your eighteenth birthday and I’m focusing wholly on that. I must keep the memories away, keep them out of our life.
As you turn eighteen, as we were told, our respite has been cut to nothing, gone. Yesterday you were a child and today you are an adult and everything will change with social services again but nothing has changed with you. You still need all of your care, but nobody seems to be able to tell us anything.
We are not going to worry. We are having a party and your parties are known as the best. You have been calling people up over the last few weeks, inviting them to come to our house on Sunday afternoon to celebrate. Anyone you have met over the years is invited. You don’t remember that you’ve not seen some of them for a very long time; you just remember that they have come to one of your parties before.
‘How many are coming?’ Greg asks.
‘I’m really not sure.’
Squidge is coming and is going to tune your sitar and Alex is coming along with his tambura to play. Yes, you’ve met someone around here wh
o can play one of those. All sorts of friends and family will arrive who have loved, helped and cared for you over the years. Our lives would be so much bleaker without these friendships and instead it feels rich today. It’s filled with the generosity of others who are prepared to come and spend time with you.
Dan the Man’s come down from the Midlands to be at your birthday party. Dan used to live near here a few years ago. He was the manager at the local theatre and cinema house that we visit and would let you go up and down, up and down, repeatedly, again and again in the lift.
And here comes our good friend Lorraine through the front door carrying a very large box in her arms. She’s made great efforts to be here today, has come all the way over from Dorset.
‘Will you give me a bath?’ you call out in your deepened voice as soon as you see her. Lorraine used to help bath you when you were small.
‘Ooo, Louis, you’re a big boy now!’ Lorraine answers in her Carry On voice. And you giggle with joy at your naughty suggestion. When you open the lid of her box you beam wide with delight: it’s eighteen tins of your favourite Ambrosia rice pudding. And now Judy and Dick have arrived. Judy clutches something wrapped up in her hand.
‘I thought this might help Louis at the moment.’
