A day in the life of Joshua Thomas Brooks can begin at any time. When he is awake, he thinks it is time to get up, no matter what the time may be.
2.30am Joshua awakes. The day begins. I check that all the worktops are clear of food that he will indiscriminately eat, knives that he will handle, milk bottles that he will throw to the tiled kitchen floor, that I have moved the jug of flowers from the table so that he cannot throw it around, kettle unplugged, fridge locked behind the purpose-built fridge cupboard, all other cupboards locked, washing moved . All these jobs have to be done before we go to bed, but it always good to check as Josh will always find the weak link.
Josh demands food. I tell him it is time to be asleep. He runs into the living room. I follow and check that the curtains have been drawn back so that he cannot pull them from the wall again, that the tv is locked into its purpose built cupboard, that all lamps are unplugged, the fire guard is firmly in place to protect both Josh from the open fire, and to protect objects from being thrown into it.
Josh hammers on the window which we have had to have replaced with extra strength glass so that he cannot break it easily.
I then notice the smell. He has emptied his bowels. However, by the time I get to him, he has reached into his nappy and pulled out the contents which are now on the floor(hard floors – we removed the carpet some time ago to alleviate the cleaning process) and the furniture (easily wipeable surfaces especially for this purpose) and the window and the walls.
I go to the downstairs bathroom which we had built some years back when he became too difficult to get up the stairs reliably and run the bath. By the time I have been back to get Josh, there is more smearage. I suggest to Josh that he might like a bath. Josh often likes a bath but this time 3.05am he decides that he does not. I manage to persuade him, with him pulling my hair, trying to remove my glasses and scratching me whilst I endeavour to remain calm. We arrive in the bathroom. I am now too covered in poo. I remove Josh’s clothes, put them in the washing machine to rinse, manhandle Josh into the bath, clean him, empty the bath and refill it with clean water. I now face the task of cleaning myself. I also have the living room to clean. If I leave Josh alone in the bathroom, he will empty the bath water onto the floor or turn the taps on full. I decide to wait until he is out of the bath and hope that the smearage has not become too engrained into the fabric of the room.
Josh will often help pull himself out of the bath with the grab rail. He decides that he does not wish to do so this time. He is very heavy and after some time and a great deal of effort he is out of the bath. I dress him.
I return to the living room, having locked the door to the downstairs bathroom so that Josh cannot turn the taps on full, break the washing machine (again), empty the detergents on the floor or flush anything down the toilet. Cleaning the living room takes some time. Josh is trying to hold on to me all the time. This makes the job harder. I am also not yet clean.
The living room is clean. I change and quickly make sure that I am clean.
I then try to persuade Josh that it is time to go to bed. We go into his room and I try the bedtime routine of story, tucking in and lights off. I put the side on the bed( especially made by Occupational Health so that he will not fall out during the night) By the time I have reached the foot of the stairs, Josh has pushed the bed away from the wall by sitting with his back on the wall, feet on the bedside and pushing. We try this same routine several times with Josh becoming more and more agitated and therefore more and more physically demanding and unpleasant.
By this time, 4.30, my patience has run thin and so I decide to allow him to get out of bed. We move back to the living room with its faint poo perfume and sit. I sit and Josh rummages in my hair or presses his nose to my ear,neck,face. Occasionally he throws my glasses. I am very short-sighted so this renders me incapable. I have to search on hands and knees to find them before one of treads on them.
By 5am I crawl up the stairs to ask my husband(whose turn it was the night before)if he could take over while I get a little sleep. Joshua will sometimes tolerate being in his bed if my husband is on the floor beside him. We have a mattress on the floor every night, primarily as a crash mat in case Josh tries to climb out of bed but it also serves the purpose as a makeshift bed when necessary. He will not tolerate this with me.
Josh then transfers his affections to my husband, rummaging in his hair,pulling his face,hair,beard until it feels like time to start the day.
By the time I come downstairs again, Josh has smashed a bottle of milk onto the kitchen tiles. My husband has retrieved the milk from outside the front door and momentarily put the bottles down to open the fridge by which time, Josh dropped one. Surrounded by a sea of milk and broken glass, my husband has to bodily lift Josh out of the way while we clean up the mess. Josh does not understand why he has been banned from the kitchen when he can clearly see his cereal in his bowl, waiting for him. He shows his confusion by banging his head against the doors and the walls, then goes into the front room to throw anything he can find. The irony of all this is that Josh does not have m ilk on his cereal as he is intolerant to dairy products.
One of us feeds Josh his Oatibix (he cannot have other cereals as they cause him to have an explosive bowel movement) and gives him his drink of water in a sports bottle as he cannot drink from a normal cup.
Once breakfast is complete, we need to dress Josh, wash him, shave him and clean his teeth. If my husband is not at home for any reason, Josh insists on a bath but my husband is able to persuade him that he does not need a bath. Today we are both at home. Josh demands a bath. I bath him, once again making sure that he does not flood the bathroom by turning on the taps, or by bailing out the bath water. Josh cannot do anything for himself and needs us to help him with all of his personal care. My husband shaves Josh and cleans his teeth. This takes a while as Josh’s mouth (he has a cleft lip and palate)has many hiding places for food. Josh’s teeth have also grown at interesting angles. Even the dentist who sees Josh in Leicester cannot decide which teeth he has and which he does not have. She is pleased that we manage to keep them clean as filling or extracting any would require a general anaesthetic.
Once Josh’s shoes are on (he has special orthotic inserts as his feet grow at a strange angle), Josh starts to demand to go out. He does this by holding his bag(which contains spare clothes, wipes, pads etc), pointing to it and tapping it. As it is a Saturday we have decided to walk into town. He has to wait until we are all ready .Waiting is not something which he does well..he becomes very unsettled, tapping the bag more and more frantically, waiting by the door and trying to open it. We have a deadlock so he cannot unlock it as he cannot put a key into a lock (although, if the key were to be left in, he could turn it and run out).
Once outside, Josh sets off at a good speed. We have to jog to keep up with him. At the end of the road where we live, there are two options...left or right. For some time Josh has decided that we will not turn right. Ever. If we try, he fights us, throws my glasses, flings himself to the ground and tries to put things into his mouth, grass, mud..whatever he can find to hand. We do not turn right.
We have to walk along a main road into town. Josh has no sense of danger, no understanding of road sense and a passion for traffic. This combination makes the journey a challenge. Once we reach the town, Josh makes for a wooden bench where he can sit and watch the traffic in safety. Josh carries a cloth with him. He likes the feel of towelling especially and we have a vast selection of small towels from which he takes one (or five if he is given the chance). He enjoys flapping his towel at the pigeons which frequent the square where we sit. Sometimes, however, he flaps the towel at people which takes them by surprise...a damp towel flicked at your face is never a pleasant thing.
One of us sits with Josh whilst the other takes our youngest child (12) to the bookshop (josh will not go into the bookshop. He has decided that he does not like it). On return we tell Josh that it is time to go the cafe. Josh will only go into one cafe in town. For reasons known only to himself, he will not go into the other cafes in town. We head for Josh’s favourite cafe. Josh has a preferred seat and heads straight for it. There is someone already sitting there. Josh becomes agitated and turns in anxious circles, hitting himself on the head until we persuade him that another seat is almost as good. Once sitting, we order and relax for a moment. Josh has a muffin which we have to break into small pieces and feed him, or place onto a plate one by one. If given the choice, he would put it all in at once. We also need to encourage him to drink between mouthfuls to clean his mouth and to prevent excess dribble. Once he has eaten his cake, Josh wants to stand up and leave but the rest of us are still drinking so we manage to keep him in his place for another 5 minutes. We have to change his top as he has dribbled cake dribble everywhere.
We leave the cake and decide to try to walk the long way home, to give us all some exercise. Josh is not keen. He turns in circles and hits his head. He tries to grab my hair but I manage to evade his grip. Once he has come to terms with the fact that we are walking, he calms down. However, there is a small crowd of people outside one of the shops on our way. Josh pushes his way through and grabs a gentleman’s jumper. He looks suitably ruffled and we apologise profusely. We walk on.
The walk is on paved areas as Josh cannot walk on uneven ground and will fall. We have to talk to him all the time, telling what we are doing and which way we are going. If there is a kerb we have to tell him to step up or step down. He does not see kerbs and trips if we do not tell him they are there.
Josh stumbles. Before we can hold him up, he falls to the ground. When he falls, he does not put his hands out to stop himself from falling but falls heavily to the ground. He does not understand why he is hurting and lashes out at us as we try to help him up again, pulling hair, scratching, digging his nails into the backs of our hands (the backs of our hands are laced with the scars of previous encounters)and trying to get to my glasses. However , we manage to get him onto his feet. He has torn his trousers and has a small graze. We try to comfort him and distract him with anything – birds flying overhead, the distant sound of a train, a lorry passing by.
We resume the walk. Again, there are some routes which Josh will not take. There is no reason behind this. Nothing has happened on these routes. Josh just decides that there are some roads he will follow and others that he will not. We have learned over the years that it is easier to go with Josh rather than try to impose our will on him on our walks. He can put up resistance for a considerable amount of time. He is very strong and very singleminded. At times like this, we follow Josh’s lead. There are times when he has to just go with us, but it takes a great deal of effort and strength and determination on our part.
We walk home. Josh is getting tired now and leans on me for support. He leans heavily, tangling his hand into my hair, despite repeated,”Hand out of my hair, please Josh” requests.
On arriving home, Josh starts to demand cake by signing it. He does not always mean that he literally wants cake when he arrives home, but rather something. Anything. His signs are few and limited and he often goes through the whole range of signs until we stumble on what it is that he wants. His sign for bath is a splashing movement of his right hand. This can however mean “I would like a bath please” or “I want my shoes. They are in the bathroom”or “I can see something in hall outside the bathroom” or “clean my teeth please”or simply”I want to play with the washing machine” (We currently rent a washing machine as Josh has broken so many by fiddling with the knobs and in addition to that, we have several loads of washing per day as Josh gets through a vast supply of clothes and bedding every day and so the only way we could afford a huge washing machine is by renting it )(as I write, it is broken again, requiring an engineer to come out. Today is Friday. He cannot come until Monday by which time the washing loads will be overflowing)
We put some music on for Josh. He often is able to relax to music. He sits on the settee and after a few minutes, settles into a snooze. After 10 minutes, he is up again, demanding cake.
We have lunch. Josh has ham sandwiches and a fruit pot. These are designed for babies but it is the only way I can get any fruit into him as his body rejects all other methods. He then picks up his bag once again, demanding to go out. We tell him that we are not going out at the moment.
My husband takes our daughter to her ballet lesson. While he is out, I start to prepare veg for the evening meal. Josh holds on to be from behind, pressing his face into my neck as I peel and wash. I need to use the bathroom. I tell Josh this. He is used to this and usually waits until I return. As I wash my hands I am aware of the smell of gas. Josh has turned the knobs on the cooker. I assume that he is trying to be helpful.l He has seen the meal preparations and tries to help by turning the gas on. He does not understand the dangers and cannot understand my explanations. I turn the gas off and run around opening windows and doors. We have a cooker, specially chosen for the slow falling glass lid. We tried all the cookers in the shop. Not for size or colour but for the silence of the lid falling. If it made an interesting sound, that would have been a source of entertainment for Josh. Our lid is silent.
Josh needs to be changed. I have to wait for my husband to return as Josh is wearing his shoes and then the job becomes a two person job as Josh will not allow us to remove his shoes. When my husband returns, we change Josh, He is soiled again. We try to think what can have caused it this time. We do not know. Josh wriggles around on his mat, spreading the mess. However we manage to change him. We get through up to 8 pads per day. Not every day. But often.
Time to collect our daughter from dancing. While I am out collecting her, Josh has flooded the kitchen. He has turned the taps on full until the sink cannot contain the water, it overflows and starts to flood into the next room. My husband had just gone into the garden to collect the washing. Josh is agitated about the mess and more so as we rush about mopping it up. Our 12 year old calls him into the front room to watch a dvd. Josh is happy to sit for a moment until he realises that it is not a dvd that he wants to watch and he starts to throw dvds from the cupboard around in search of one that he would prefer (eg Ice Age or Wallace and Grommit).
Kitchen mopped, we decide to have a cup of tea. We have to keep the kettle unplugged as Josh knows how to switch it on but not how to plug it in. He likes the noise, the steam and the little red light on the back. We have tried to buy a kettle without a little red light but they are very hard to find.
I sit with a cup of tea. Josh immediately sits next to me, hand in my hair, on my face, in my ear, around my neck. I have to wait for my tea.
We watch the dvd. As soon as it finishes, he wants another, or cake,or both. I am weary. We watch another dvd.
Time for the evening meal. Josh cannot eat rice or pasta- Rice because he finds it indigestible AND he still has a small hole in his palate so sometimes grains of rice become lodged there which is not pleasant and pasta because it contains too much gluten and he does not like the gluten free options. We have potato based meals. Josh has mashed potato with no butter or spread but flavoured with cinnamon or other gentle and flavoursome spices. We also have chicken or highly expensive gluten free sausages and broccoli, the only vegetable which Josh can digest easily.
We have to feed Josh, or load a fork which he can use himself. We have to encourage him to drink between mouthfuls. As soon as he has finished, he is off to the front room. The TV cupboard is locked so he bangs his head on the wall and looks for other things to do. This entails throwing the remote controls into fireplace (no fire and fireguard in place)so he throws his toys from his toy box instead, He is however momentarily distracted by the noisy tractor in his toy box and plays with that for a moment, pushing the button on the top which makes a light flash and the toy makes an engine noise. After a few minutes, he casts it aside, denting the wooden TV cupboard as he does so.
When we have cleared the kitchen of all things that Josh might throw or ingest, we all sit together for a while, watching a rerun of Top Gear. Josh likes the cars and comments on them by signing his particular sign for cars (closed fist moving forwards).
Eventually it is time for the bedtime routine to begin again. Josh needs to be persuaded into the bathroom but has a long soak in the bath before he starts to bail the water out. He is dressed (he has to have 2 pads on at night in order to contain the contents) and ready for bed. He has a story then the side is put onto his bed and we say,”Light off!” Josh signs ‘ light off’ and he is in bed.
We tidy up, sort out Josh’s clothes, put everything away, lock everything, open the curtains, remove any obstacles on the floor so that if he gets up in the night, he will not trip on anything and eventually go to bed.
A day in the life..........
All that I have written happens, although not always on the same day. Sometimes it DOES happen all on the same day.
There is probably a lot more I could say. Like the time we went away for a weekend and had to spend 45 minutes carrying Josh up a steep grassy slope, me at the feet end, my husband at the head end, our daughter carrying all the bags and coats because he decided that for some reason he did not want to go that way. As we had never been there before, it could not have been any previous experiences that had put him off. He just decided.
Or the time when he grabbed a woman in the street by the collar. She was terrified. There was no warning that he would do this and no apparent reason why he did it. It remains a mystery.
Or the time that he pulled so much hair out of my head that when I managed to untangle his hand, a large cloud of hair blew into the faces of the surprised on comers. My crime? Asking him to wait for a moment.
Or the time when he flooded the kitchen. I rushed to turn off the taps and he went into the front room and began to find things to throw around so I rushed to front room and he went back to the kitchen and turned the taps on full again. He has broken at least two sets of kitchen taps.
Life with Josh is exhausting, relentless and challenging. We find we can do less and less as a family as he decides that he does not want to do something or go somewhere, or conversely that he decides that he DOES want to do something (sit on Sheringham station and watch the steam trains for hours and hours as a recent example). We do not go out as a couple as any change in the bedtime routine throws him into panic. We do not have holidays really as he takes a long time to get used to being in a new place and is so unsettled as to make the experience considerably less than relaxing.
His behaviour is often unpredictable. We manage him. His day centre manages him but that is because he has one to one support . Without this support I feel that the frequency and the intensity of his unpredictable behaviours would be higher and greater.
I hope this begins to paint a picture of Josh.
3rd September 2010