Sunday, 31 January 2016

fears and that...'s one in the interests of complete honesty and vulnerability. Feels a bit like opening my chest to let you see into my heart but I just wanted to write about my innermost fears and thoughts as I know I can seem to be flippant and superficial. A coping mechanism perhaps?? Here goes....

Most of the time I DO cope with our life as it is(just as well!!!) but there are occasions when fear overwhelms and inundates me. Fears about the future..both Jboy's and ours. Sometimes my fears about what will be are so heavy I can almost feel them, pressing down.

What if he dies? When he was a baby and was rushed back into hospital, there were obviously items of his clothing in our washing system (a loose term for the whole washing, drying, sorting thing that went on/goes with tedious regularity).
It was the little socks that turned me into a blubbering wreck. So small. So evocative of the little feet that had filled them but hours before. Would they ever be needed again?? I remember sitting on the floor and just sobbing. We were fortunate/blessed that we did have those little feet back to fill those tiny socks (I remember them clearly. They were white with little blue and red stripes). I know there are people who are not so fortunate as we were and you have my admiration, respect and deepest,deepest sympathy.
We have had him for so much longer now. The medics warned us at the beginning of his life that they could not predict his life expectancy as they had never met anyone like him before... his every illness fills me with fear and trepidation. Even to this day.

What if I die? How will he cope? How will he understand? Will he feel abandoned?? I can't quite carry in me the thought of his grief, inexplicable to him. How will M cope????

What if M dies? How will we cope .... how will I cope? There is so much I cannot physically do with/for Jboy any more and need M to help with....What would happen???

What of Jboy's future? What if someone is cruel to him.?......he can't tell would we know??? How on earth can we prevent it? and...What happens when we can't cope with him at home anymore???

I know these fears are not exclusive to me. I know that many parents fear the same sort of things but I can't and don't speak for them.  I am just speaking for me. Thankfully, most of the time, obviously one just gets on with life but from time to time, in the quiet of the night, I am overwhelmed and I almost cannot breathe with fear.  Rigid.
So.....just know, parents,friends, that it is OK to fear. It is Ok and probably even natural for a parent to feel such things but it is if these fears take over and rule your every waking hour that it becomes a problem. Being washed by fears every now and then are part of  life. Managing to swim in the sea of worries is also a part.  Isn't it?or is it??? But if/when you start drowning in them , then you might need external help. I know I do.

So, if you peer into my  heart you will see fear and worries a-plenty. They are there. Raw and sore. I cannot deny it and don't. BUT I am thankful that for the most part I can keep afloat and if I feel myself sinking (which I do) I have friends and family to help me float again. Sometimes we all need a little help from our friends...and more to the point, we have to tell them we need that help and then let them do it.(I am speaking to myself as much as anyone else here)

So, ponderous Sunday pondering over. Thanks for being there.
The End

the weekend tale

So....thus far it has been a good weekend. Yesterday we discovered a new garden centre with the delights of fish, many an interesting garden tool and not just one but two cafes. Then we had news of a most exciting engagement was announced between BassmanBill and MelodyMaid. Whoop and double whoop!!! Then M took me and Jboy out for a sumptuous lunch of hot sandwiches. And today started at 4 am...yes 4am....and then continued with an on and off snooze until 8!!!!!! Jboy allowed us a sedate stroll into the grand metropolis that is our town (clearly, I jest..). We had a sit, a coffee and a chat..well M and I chatted. Jboy contributed less in the way of chat and more in the way of cloth throwing, hair rubbing and shoulder dribbling. So far, the only minor fly in the weekend ointment has been the fact that Jboy didn't want to come home (The attractions of our grand metropolis were obviously too great) but I employed the 'going home for a sandwich' song and dance routine which lured him back to the delights of our dwelling. And here we are. Now I think I had better go and trawl the internet,just in case I need to know about white dresses or hats....
The End

Jboy and technology

So.Jboy and modern technology.....Jboy has many Otherabilities, one of which is to manage to make modern technology do things that others(well me) cannot. For example, if I nip out of the room for a moment, he can take the Doofer, press things and transform whatever he was watching into something altogether different, such as a split screen, or a completely blank blue screen or a programme in French. He does this with the flick of a finger..yet if I try to produce the same effect, I press all the buttons, systematically, one after the other ...nothing!!! He does this with nonchalance and panache (that famous duo) then throws the Doofer into some almost inaccessible place and stands, the picture of innocence(like those fb posts at Christmas when a dog stands next to a fallen Christmas tree and the caption reads,'I am glad you are home.The tree just fell over'). Similarly, the laptop...he sits next to me, very closely, on many an occasion, and with sleight of hand, somehow manages to make the screen do things no ordinary human being can do. Once, he managed to turn the script upside down and we thought we would be forever doomed to typing upside side (probably a much sought after skill...who knows) but thankfully after much huffing and puffing from technophobe M and much trial and error from me, we managed to revert the thing.....and so it goes on. Perhaps he is a genius after all. Always knew that, of course.
Genius is his middle name....(well, obviously it isn't, that would be presumptuous)(which isn't his middle name either)
The End

Thursday, 28 January 2016

So what is his diagnosis.....???? boy...what is his diagnosis??  I have been asked that many a time and oft......he doesn't have a specific condition but has a collection of difficulties..or a constellation as it is known.  I shall list the ones I can remember....: here goes...
Agenesis of the corpus callosum (middle bit of brain is missing)
Immature Optic Discs
Small ear bits (not the technical term but I have forgotten what that is)
Inefficient pituitary gland
Cleft Lip (now mended)
Cleft Palate (now mended)(with associated teeth displacement/chewing difficulties)
Heart Murmur (now resolved)
Small boy bits (had testosterone to help)
Undescended testicles (2 operations)
Teeny tiny feet which turn out like a duck (wears orthotics in shoes to help)
Global developmental delay
Few fine motor skills
Visual difficulties
Hearing problems (a fluctuating hearing loss)
Digestive system which doesn't function properly
Diagnosis of Autism

That's all I can think of at the moment...

So altogether he is a marvel of creation so many bits don't work or don't work properly and yet he is still a lovely happy chap.
It means he is completely dependent in every way for everything but he is still our marvel.
The End

ps I know I overuse the word Marvellous.....I am aware of this fact....and I don't  even care!!!

Wednesday, 27 January 2016

once upon a time...#special needs child

I probably should have started with this...this is the shortened and abridged version of our story....
are you sitting comfortably???
Then I'll begin....

Once upon a time there was a mummy and a daddy who lived very happily, if a little noisily, with their three young children. They were all very excited because the three would soon become four young children.
One day in October, in the early hours of a Monday morning, the baby decided he was going to arrive, two weeks early. The emergency friend came in her pyjamas to be there for the three and daddy took mummy to the nearby little cottage hospital. After 55 minutes from first tweak, the baby boy was born.

And so began the nightmarish adventure....he was no straightforward fellow, he. He had a large and significant cleft lip and palate and was clearly an unhappy boy.  The little (or in fact, quite large ) chap was whisked away in his own ambulance to the nearest large hospital with a Special Care baby Unit some 15 miles away.  Mummy followed soon afterwards in her own ambulance which had to keep stopping to let the mummy be sick!
Mummy and baby were reunited in a small room full of teeny tiny babies all attached to tubes and monitors. The little boy was soon also attached to his own special set of monitors and tubes but he looked SO big compared with all the others.  The days which followed were a haze of medical people, coming and going. Mummy stayed in the hospital but daddy had to go home and look after the Three. Wave after wave of medical person came to see mummy..and the news which they brought got more and more difficult.
It turned out that Jboy (for obviously that is who it is) was not going to be straightforward in any way!
After he had been stabilised and was deemed fit, Jboy came home. I (yes, I am that mummy) couldn't feed him as he couldn't suck so I spent my days pumping for England(well for Jboy), then squeezing it into his mouth with a special bottle..feeding would take about an hour...he fed every two hours..and inbetween I had to look after the very marvellous Three, and keep the house from falling into rack and ruin around us.  After we had been home for two weeks, I was changing Jboy's nappy when he stopped breathing. I jiggled him about and he started again (we later learned about resus but at that point I had no idea). Grannie was here to meet her newest we left her in charge of the excellent Three and rushed into hospital...where, to cut a long story very short, Jboy stayed for two months. During that time he stopped breathing on numerous occasions, his heartbeat stopped and he was a very poorly little chap. He lost a lot of weight, despite the mummy milk being fed to him by way of an NG tube and developed eczema as he was allergic to the sheets on the hospital cot. (Incidentally we had a rather nasty moment with the NG tube and an inexperienced nurse who had threaded it into his lungs by mistake and it was only because I sensed something was wrong and refused to let her feed him until a senior nurse had checked that we avoided having a baby with a lungful of milk)
He came home just before his first Christmas. Yay!!!!
 He had his lip mended in the January and his cleft in the following May.

As life went on and the marvellous Three continued to be marvellous, it became apparent that Jboy wasn't just in need of medicinal help (I have missed out a chunk of stuff but he was now on heart meds, cortisol and had had testosterone injected into his little bottom) but as developmental milestone after milestone were missed, it was obvious that he also had a considerable developmental delay.  So the great wheels of the developmental support machine began to whirr. 
By the time he was 1, we had appointments of some sort every  week..sometimes more than once a week. He had a paediatrician, the plastic surgeon, a geneticist, a cardiologist, the endocrinologist(hormone doctor),an ENT doctor and associated VI  and HI specialists, the Opthalmic doctor (forgotten the proper name for that), the Orthopaedic department,the speech therapist, the physiotherapist and the occupational therapist. At one point we had over 20 professionals involved in Jboy's little life....I seem to have mislaid a few here.

And so that is how our lives have progressed....appointments have dwindled now as his heart has settled ,he doesn't need any more plastic surgery, his hormones have stabilised etc etc etc.
The first few months of Jboy's life were the steepest learning curve we have ever had to take. Without our wonderful Three being so wonderful, without the arrival of delightful Dancing girl some years later and without our splendid supportive friends,we would have sunk beneath the weight of it all.

So now, grown up, moustachioed, muscly and much more ,our man-boy continues to flavour our lives with sweetness and sometimes the not so sweet!

The End

a day in the life....

I wrote this about 5 or 6 years ago when I was trying to support our claim for help.  He has changed  in that he is bigger and stronger and more determined  these days. But this was then..........(we got the help by the way)


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. 


Nicola Brooks

3rd September 2010






Tuesday, 26 January 2016


So...balance....not just the ability to stand on one leg (although that too) but the whole life balance thing...getting it..or not!

I have a middle ear thing which means that I find balancing very difficult. I think I must have always had it because I found riding a two wheeler nigh on impossible and once,when M and  I were  first married, we decided to cycle around the city where we lived at that time. One fine day, we set off ...tra la was a lovely day. Clear skies. No wind. No rain. Nothing to cause any cycling type incidents.  M led the way. As we were cycling along, I just....well, tipped over sideways, incapable of staying upright. Thankfully, M had just turned round to see where I was and how I was doing and so saw me in all my glory tipping sideways onto a busy city road!!! He said it was as if I was in slow motion...a graceful arc forming as I went sideways and landed, inelegantly on the road. No damage was done other than to my pride and my jeans.  I was a pilates-partaker for a while until I realised that every time I lay down flat to do the exercises, I felt waves of nausea coming over me...... took me a while to link the two things..bit slow on the uptake sometimes!! So I have had to abandon all thoughts of core exercises and the like (oh dear!!).  A few Summers ago, I woke up one morning and fell down. Then I got up and fell down again. This kept happening so I decided not to stand up for a bit (as I said..bit slow!!)..the room was spinning , my bed felt as if it was at an angle, with me slipping off...I was literally holding on to the edge of the bed... and when I did manage to get upright, the ground felt spongey beneath my feet. Most odd. Thankfully M was able to do the Pavement vigil for a few days and I was most grateful that Jboy was happy to sit and watch a dvd on repeat on his return from the Most Marvellous Day Centre. When I managed to stagger to the surgery, the doctor diagnosed Labyrinthitis....and I have been a dizzy old stick ever since. It is always there, lurking, but is mostly a former shadow of itself. But the bottom line is, I am rubbish at balancing!

But balancing life..... that is altogether a different thing. Given free rein, I would choose to sing/dance/read/write/draw all day but there are housey things that need to be food preparation and cleaning so we don't disappear beneath piles of dust balls. So I HAVE to be balanced. I find it a struggle. It isn't my natural condition at all.  I was thinking about Jboy (as I do) and his ability or lack thereof to balance. Physically he can't balance. He has teeny tiny feet and just can't balance. He also isn't that hot at getting balance in a metaphorical sense. For example, watching the same DVD over and over and over again until he hates it and throws it at the wall (or me) He would also eat nothing but cake if he had his way....balance..... So maybe it is a developmental thing. A cognitive thing. An ability to recognise when enough is enough??? Maybe???
Well that's a heavy Tuesday pondering.
Weigh it up and have a is your balance? Are you good at it? Do you enjoy it? I could go on and on but that would just be unbalanced.....(and exceedingly boring)
The End

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Monday, 25 January 2016

The sea of shoppers.....

So... Sunday was a better day with Jboy than Saturday had been. Huzzah! He climbed voluntarily into the car so we were off. 'Where to?' M asked. We both groaned inwardly and indeed outwardly at the idea of yet another garden centre , lovely as they are, so we just set spontaneous we were. No idea where we would open road, a tank full of fuel....even a cooperative Jboy. So we did what many a parent of an unsettled baby has done, we just drove. Jboy is entertained (and contained) in the car while it is moving..he isn't so keen on stopping and positively hates reversing (an aside..M and I were recently standing next to a horse box as it waited at some trafiic lights. From within the horse box we could hear much movement and kicking..if it had been a cartoon, there would have been hoof prints in the side of the horse reminded us of Jboy !! ) Anyway, we drove until we found a signpost to a 'shopping village'. We headed there. There was bound to be cafe of some description there, we thought, and I had been up A Very Long Time by that point . Maybe we are naive..or just sheltered but nothing had quite prepared us for the experience. To start with the car park was packed. And not just with cars... there were coaches galore!!! (Should have been a clue) Thankfully, having Jboy means we get to park in a Blue Badge spot, of which there were many. Once we got out of the car, we were kind of emerged in a raging torrent of people, washing us along with their multiple shopping bags. (To my Cornish friends and family, it was like a stormy day at Perranporth or Porthtowan..wave after wave after wave). We were swept along until we spotted a cafe and just about managed to get to safety.(Where is a Lifeguard when you need one??) In the cafe,we gathered our thoughts and our wits ,such as they are, about us and planned our strategy. We would dive once more into the fray and visit only those places we knew the names of.....there were about 4. We had landed in some alien land of shopping where the shops had names like 'Versace' and 'Armani' and where things in the sale and with a discount still cost £400. Fortified with strong coffee and a very pleasant pain au raisin (cosmopolitan we!!), we went out.....I think we went round and round the place, carried along by the force of the people waves, several times. Jboy was happy just walking, people watching, light gazing and occasionally stopping to bop at music blaring from one of the outlets. If Jboy is happy, we are largely happy too. Eventually, however, M and I began to flag. There is only so much of this sort of experience one can take (well, this one!!). We managed to locate our car and broke free from the current and the strong tides, clambered wearily into the car and collapsed,panting in our seats. We drove home. slightly stunned by the episode and vowing to be more careful next time we decide to be spontaneous!
Such fun.
The End

Sunday, 24 January 2016

post-post ponderings

So...up at 1.30am........has given me some time to ponder on the horribleness of our day yesterday. I KNOW that Jboy wasn't really being mean and that he was reacting..or 'acting out'...acting out what though?? reacting to what?? Being at home?? NOT being at the Most Marvellous Respite Centre? Was he paying us back for letting him go? Or for having him home? We will never know but today,in the cold light of day (not yet dawn) his reactions yesterday feel slightly more reasonable. He has no way of explaining himself with words, so how else can he show us his displeasure???? If only we knew how to help him in a more constructive way.....ideas?????
The End

Saturday, 23 January 2016

reality check.....

So...for the first time ever M and I are wondering how much longer we can go on looking after Jboy at home. He has been away a week and we have somehow, during that week, become ourselves again. Today, day 1 of him being home, has been SO hard. I am normally a fairly positive , half full glass sort of person but today I feel worn out. Worn down. Not just emotionally but physically too..Jboy has a tendency to push down hard on my head and after a while I get terrible headaches, neck ache and all sorts of other aches too. This is all the more apparent after a week without him. By Thursday we were both feeling rested and the aches and pains associated with Jboy care had largely now he is home and wrestling us with a vengeance, we are wondering how much longer we can do this. He has been a refusnik extraordinaire. He has walked us into the ground, going round and round our little town and whilst at home he has been throwing and pulling and generally destroying our home....... BUT even the thought of him being somewhere else sends us in to paroxysms of anxiety and doubt. No one would love him like we do. Or cuddle him when he needs it. Or anticipate his needs quite like we do. It would be an agony. How could we do it? One day we might have to face the reality that we can no longer cope. That thought makes my insides curl up in a tight  hard ball but it is a reality that I guess we should face.
But not right now.
Not today.
Not now.
The End....look at that face!!!!!!! lovely boy........butter wouldn't melt etc etc etc

words words words muse has returned...and many early morning musings with's early morning musing concerned words and pronunciation..of course it did. What else would one consider in the morning????? As mentioned many a time and oft, I hail from Cornwall but my mother was from Yorkshire and so, many of my words as I was growing up, were a mixture of the two. Of course I had no idea that these were not received English pronunciation until I crossed the border on a permanent basis and found myself in an alien world beyond the Tamar. Take the word 'almond' for example. I managed to spend at least 18 years pronouncing the word as it is written 'ahl...mund'...apparently, the 'l' is silent and it should have been 'ahmond'. Another word which I had apparently been saying all wrong was 'forehead', pronounced 'fore head' is, I was told, 'forrid' otherwise the rhyme about the little girl with a little curl in the middle of hers, wouldn't make any sense. For some time I assumed I was just wrong..until it occured to me that I wasn't necesarily wrong, just dialectically different. There were words which didn't translate the border crossing at all..such as the time I went into a bakery in Coventry and asked for 'six splits' request was met with blank looks and a certain amount of derision....'splits' are, of course, bread rolls/baps/cobs or batch which is the Coventrian word(so M says). I had to point to the item required in order to complete my purchase and therefore be able to make lunch. Another word is 'grammersow'..which i thought to be in common usage until I emigrated...yes, this is the Cornish word for woodlouse. Even to this day there are some words which I have to ask M ,"Is this word English or Cornish?" Of course my mind has gone completely blank so I can't give you any examples at all....and there is always the possibility that the word could have been from Yorkshire!!!!
So thank you to my muse for enabling these brain tickling thoughts.
(M is now in debate with himself as to whether 'batch' is a filled roll or just the bready item......I don't know!! Just call them a split and be done with it!!)
The End

Friday, 22 January 2016

Friday feelings... my boy comes home after almost a week away. This is our last break for three months as they refurbish his Most Marvellous Respite Centre. I feel calm and relaxed and have even caught up on some much needed sleep but , quite honestly,the thought of three months without a break is causing me to feel a little wobbly and weary in anticipation.  I love my boy but the toll of day to day and night to night constant caring mounts up and makes me feel somehow shadowy.  A shadow of the real me. Or a one dimensional version of myself. It is weird and very hard to explain. I am subsumed into Jboy and we become one.

 Obviously we are not and maybe that is a bit overdramatic, an overstatement. I am sure many parents of small children feel something similar..where do they end and the child begin?

 Still, we have had a good few days and filled them with good positive things and lovely people so I shall gird myself and greet my lovely man-boy with all the love that he deserves. He is a treasure and enriches our lives in so many ways. In reality, my one dimensional moments and my shadowy self are but a small (personal) blip in this interesting life that Jboy has brought us.
So, on to face the next three months with a smile, sometimes gritted teeth and a knowledge that there are people worse off than me!
Somewhat rambling.
The End

Thursday, 21 January 2016

the 'middle aisle' I have avoided the siren call of the 'middle aisle'!!  If you are unfamiliar with the concept of the 'middle aisle', let me enlighten you.  There are a series of supermarkets which provide cheapish food, without decorative stacking but with 'middle aisles'...and in these middle aisles are all manner of delights that you didn't know you needed until you saw them...who knew you would need a set of kitchen knives in pastel shades when in your kitchen you have a perfectly good set of functional (but a little boring) knives.....Or who knew you would need a new saucepan in glistening, gleaming, glamorous red, calling out to sit upon your kitchen shelf, nestling next to the other one you bought the other week. Or a set of Chinese bowls...or a mini casserole dish....or a teeny tiny food processor...or an electric cheese grater...or a tiny tagine (to match the larger one you had for Christmas a few years ago and still haven't quite worked out how to use),,,or maybe that's just me!!!! Actually it is M too...but whereas I drool over the kitchen things (in red, obviously), he gazes longingly at all the tooly-type things ....surely he needs a (insert name of tool here)...or a router (!) or a set of drill bits to match all the others in his shed. Today, however, I have resisted the call. Oh, I looked and yes, I carried things round the shop for a bit but I put them all back and in the right place and everything.  I realised that actually I have managed 27 years of Jboy's life without the need for a mini food processor and he can't eat dairy things so the electric cheese grater would sit, gathering dust....and I have enough saucepans/kitchen knives etc.
Mind you.....they did have a rather natty chopping board...............
The End

Wednesday, 20 January 2016

housewifery and self

So... I never planned to be a 'housewife'. It was never my greatest ambition to clean and wash and cook and all the other things that come with the job. It also never retirement plan for me! No, that was never my plan! But sometimes life takes a different turn from the one you expected/hoped/thought. My brain sometimes groans because it has so many thoughts and ideas jiggling around in it and I have nowhere to put them. Having a chap like Jboy means that I am unable to work so-called 'proper' hours because I have no outside care for him once he is home from the Most Marvellous Day Centre. Also, I am mostly exhausted so the thought of being efficient enough to do a 'proper' job makes me want to lie in a dark corner and suck my thumb(I used to suck my at a time, obvs...I maintained that one was raspberry and the other strawberry) (my mother used to tell me terrible tooth related tales in an attempt to stop didn't work . I just stopped one day. Maybe I had sucked all the flavour out). So although I never planned to be a 'housewife' (I didn't marry the house, you know.....was my stock reply)it appears that that is what I am.
Once, in a heated moment, after a particularly 'lively' discussion with M, I listed all the things I,as a 'housewife' do and how much it would cost for him to employ someone to do all those different things. I was quietly surprised at how much I would cost to employ, although a 'housewife', 'homemaker' 'domestic manager' is what I do, it most certainly isn't who I am. I KNOW the limitations that life brings but it doesn't have to define you. It has taken me a LOOOOONG time to realise that. So here I am, sharing my pearls of wisdom.  BE YOU wherever you find yourself.
The very End

Tuesday, 19 January 2016

subtitles and our use thereof.....

So... M and I were sitting in our Jboy-free Sunday evening, watching grown ups tv and we pondered to ourselves what made it so very different from our usual Sunday evenings. Obviously the lack of wrangling and wrestling made it a calmer environment, as did the gently guttering candle on the mantlepiece which would have been a source of great excitement had Jboy been here, also there was the lack of  need to be vigilant at all times with regards to the roaring fire when the necessity for instant reflexes are called for as we deflect various items being thrown by Jboy at the fire guards in the hope that something would go in and add to the flameage and of course there was the luxury of being able to drink a cup of tea without 'help'.  But no, it was all of these but there was more....we were watching a grownup programme WITHOUT the subtitles on. When Jboy is here, we either watch the TV to a background noise of 'Jingoh bows' or 'It's the most wonderful time of the year' or vrooooooom vroooooom vrooooooom, or we watch it with the volume turned down so low that subtitles are required. Why? you may well ask. When we watch grownups TV (I hesitate to say adult tv because that has altogether a different connotation) (and we don't watch that) M prefers shoot 'em up films or things with noisy battles and Jboy doesn't like such things and gets distressed by the noise so we watch it rather as if we might have watched  a silent movie. All we need is the piano giving us the atmospheric music..although, come to think of it, we might have to mute that  for Jboy too. He is a sensitive little soul. On the other hand, subtitles do give the illusion that we are watching some marvellously highbrow foreign film... and also obviate the necessity of one or other of us, with our ageing ears, saying'What did he/she say?' every other minute. So, in fact, Jboy has done us a great service. Marvellous fellow.
The End

Saturday, 16 January 2016


So...masks that we wear...many of us wear metaphorical masks to hide the truth of what we feel. I wonder why we do it because we are afraid of what others might think? Is it because we are afraid that if we show how we really are, we will break into a million pieces? Is it because , by wearing a mask, we are denying the truth of how we feel and can therefore ignore it, pretending that it isn't true??  Is it like a helmet of defence because the truth is too painful? Or is it all these things and more? Or none?? I think it depends largely on the person and the situation but it is true that many of us wear masks. Maybe not all the time , and maybe not all of us,but certainly  some of us do for some of the time.  Jboy ,however,does not. He does not pretend. He is as he is. If he is cross, he will throw things or try to de-hairyify my head. If he is sad, he will cry those silent tears or fold himself in half and hide his face. If he is happy, he laughs like a drain. If he is content, he is still and quiet. If he is agitated he will rush around like a bee in a jar. What you see, is what you get. Maybe he is able to be whatever he is feeling because he does not have the mental sophistication to be anything else. I know there have been many times when people have asked me how I am, and I reply with that old pat answer,"Fine are you?". Sometimes this is protecting me. Sometimes this is protecting the person who asked me. Jboy can't do that either. He can't think outside of himself and his own needs/desires/feelings. His developmental stage is stuck at about 18months.  I find I wear fewer masks these days so, if you see me and ask me how I am, be prepared to be told!!
The End
P.S. I find actual real masks really masked ball for me!!!!

Friday, 15 January 2016

jboy and the love/hate thing

So Jboy and monster machines...Jboy has a bit of love/hate relationship with machinery. He loves to watch it but is absolutely terrified by it ..that is the monster element. (element not elephant)(although he would probably be scared of elephants too)  The house at the end of our road is having some building work of some sort done which of course involves machinery. Jboy was desperate to go outside and watch the HUGE lorry with the crane as it deposited piles of bricks, tantalisingly over the fence. He was excited but scared in equal measure. In fact, he was so attracted and yet repelled that he broke one of his own rules.!!!  Instead of standing where we usually stand for our Pavement Vigil, he moved along the pavement to get a better (and as it happened more terrifying) view of the machinery. He couldn't quite bring himself to look at it full on and had to view it from behind a veil of my hair and the protection of my entire body. He wasn't cowering as such....he was just laughing in an excited way while trembling with fear..behind me. I evidently make a useful human shield. I have my uses. Thankfully, the lorry finished its delivery before the bus came otherwise I imagine we might have had a bit of a tussle!! He loves a bit of large machinery but only from the safety of behind a parent . I wonder what he makes of it all?
The End

Jboy and the lights

So....Jboy and the lights our kitchen we have a selection of lighting options from which we can choose to light up our kitcheny darkness....we have the wall lights, a rather atttractive central light, fairy lights left over from a few Christmasses ago but which remain , giving me the illusion that I have a kitchen like Nigella,and the newest feature, candles.  Normally, we have the wall lights and the fairy lights to infuse the darkness with light but yesterday evening, by some aberration, we had the central light on only. Attractive as this is, it is The Wrong Light. Our attention was drawn to this fact when Jboy, making his weary way bathwards (we have a downstairs bathroom as he can't do stairs), suddenly became immobile. Rendered incapable of any forward motion. He stood in the doorway of the kitchen, chuckling his anxious chuckle and covering his face with his arms. He was clearly saying, as only he can,"Woe is me. My ordered world has fallen into disorder. I cannot move". M was in the bathroom, running a delightful pine scented bath and I had my arms full of stuff. Clearly we parents were not going to help him return the order so he took it upon himself to do it. How could a chap proceed to the bathroom when The Wrong Lights were on? With the air of a fellow who was thinking,'If you want a job doing, do it yourself' he ventured into the kitchen, switched on the wall lights then moved to switch off the central light.  How clever he is!!! He avoided plunging us into darkness!!Then and only then could he advance, happily and comfortably, to his pine scented, evening immersion.
The End

Tuesday, 12 January 2016

Tuesday thoughts

So... I am always writing about my boy and sometimes about my other children...but do I REALLY cope with it all???  I am generally a positive person and see the old half full thing but there have been times when I have just wanted to stay hidden under my duvet and not come out for a long long time. There have been and there are still times when I just want to cry and sob because it is all too hard and I don't think I can do another day,another minute, another breath...there are times when I feel incandescent with rage as other people get on with lives that seem to be going forward whereas I feel I am often treading water and one day I might not be able to do that any more and will sink like a stone, waves of exhaustion and years of caring, relentlessly, pouring over me.
Thankfully, this is not one of those days. So do I really cope?? Mostly. But not always. But so far, I HAVE got out from under that duvet. I haven't yet drowned...I feel pretty wet and soggy but I haven't drowned .

I always try to be as real as possible in my musings but without dwelling on things too much. Life is, after all. what it is.
Love and stuff
The End

chain dvds..... know how some people like to be in control of the tv remote(Or doofer as it is known in our house)?? and how sometimes they spend happy hours flipping from one channel to another and just as you get interested in something , FLIP, over it goes???? Well, Jboy has his own version of that particluarly teethgrittingly irritating I may have mentioned once or thrice,his dvds and the player are in a (cupless) cupboard and are generally locked away but obviously when we need to choose a dvd from our fairly substantial collection, the cupboard door is open and the dvds revelaed in all their glory. Jboy goes to select one. I put it in the machine. We sit in our allocated spaces (I am allowed only to sit in one particular place) and settle down to watch whatever choice item he has selected.....after a few  minutes, he decides that this is NOT the dvd he wants and he MUST have a different one. Now. Or preferably 5 minutes ago. So we go through the whole process again...and then again..and again.....I know, I know..he is very clever. And it is 'Good Choosing' but it drives me completely bonkers.  Of course , i am smiling as i write this and it is with tongue in cheek (most uncomfortable) and he IS very clever and it IS good choosing...but I just needed to share my moment as I sit here,on my little island, swamped by a sea of dvds(including Ben and Holly!!!) which he has rejected and am being subjected to yet another Shaun the Sheep, not the Keep Fit one, or the Christmas one, or the Magic one, but the Alien one. Oh, here he goes again....apparently he needs a different dvd.....this one won't do after all
Not waving but drowning......;-)
The End

Sunday, 10 January 2016

Then there were three... we are..back to three- M, Jboy and me. Dancing Girl is back in her world of tutus, leotards and arabesques. I had a good long cry after I had taken her back. So much so that my eyes felt like grit and my head ached that dehydrated ache for ages afterwards. When did our baby get so grownup??? How did that happen?? Why didn't I see it coming??
 As each of our lovely children have grown and left, I have felt the space keenly and have even been known to creep in their now empty rooms and have a good cry. Of course, we all bring our children up to go and fly the nest but when the baby goes, it is a shock. Naturally we still have Jboy with us, our perpetual and large baby but he isn't the world's greatest conversationalist....... also as a mum, I have to readjust and find out who I am and what my role is all over again. I am always Jboy's carer, that is a given, but when the others come home it is a completely different sort of mothering role and now I am back to being 'just' a carer. No late nights deep in conversation about the meaning of life, or times when I am a shoulder to cry on, or an adviser about hair/makeup etc (about which I know nothing but I like it that she asks me) I WILL adjust. I always do but these transition days are horrid. The emptiness will fill in.Or cover over. Or be reabsorbed into the fullness of life but just for today,I think I need chocolate.
The End

Christmas is gone...

So...Christmas is over. The festive season has passed. How can I be sure??? well, there is only a small piece of soggy Christmas cake lurking in the cake box, a rather dried up end of posh cheese lies mouldering in the fridge, jars of specialist pickle with names like 'Carolsingers chutney' and 'Mulled wine and port pickle' sit forlornly next to the more prosaic and now smug tomato sauce and Jboy's toys are meeting a very grisly end, one by sorry one. As mentioned, he likes to push down on the heads of his musical toys, making them sing in slightly strangulated voices but has discovered that if he presses down even harder, their necks break!!!  I am hoping that he does not extend this discovery to me and my neck! (It's been nice knowing you..) So , two of his vocal fluffy friends have now met a very nasty end, their heads hanging loosely and rather grotesquesly over their little fluffy bodies, and yesterday, his lovely dog, the one which sings in a rather Far.Eastern accent, drowned in a bath, scented with 'soothing herbs' (designed to help Jboy sleep deeply.HA!!! she said rather bitterly). I am sure the 'soothing scents' helped it as it sank beneath the bubbles, to the sound of Jboy's gurgling laughter. The furry choir is therefore much depleted.
The End

Saturday, 9 January 2016

seaweed and snails

So...stuff people put on their know, moisturiser for example. Not make up. I don't really do face make up. In fact I was in a shop recently looking for something for Dancing Girl and picked up an attractive little container which had pale pink shiny bubbles inside..what is not to like? i had no idea what it was at all but took it to the till ,sure that DG would know what it was for and would be forever in my debt. "That's £14.99,please."said the glamourous 12 year old behind the till. "WHAT?"I replied as only an ancient can  when faced with the complexities of modernity. "Well it is a very good lightener/highlighter(I have forgotten what she said exactly)". "Well, I don't think i am going to pay that" I smiled to soften the blow of my lack of purchase. "I think I will let my girl buy her own.."  "Oh isn't it for you?"asked the small child with a full face of make up who was serving me. I merely smiled and pointed to the face,,,au naturel. "Do I LOOK like I use that?" I asked. She was obviously a well brought up child because she just smiled politely and left the guffawing until I was out of earshot. Almost.  But back to moisturiser and suchlike..things which are less scary. Oh but are they?? I know that seaweed stuff is supposed to do wonders for the skin (have you ever seen a mermaid with bad skin) but I read recently that snail gel aka snail slime is  supposed to be the new miracle thing. How did they discover that? Seaweed I can understand.Apart from mermaids obviously, someone went swimming and emerged from the waves bedecked with a bit of laver or mermaids purse stuck to their face and thought to themselves, 'Mmm that makes my skin feel good. I shall market it immediately',,but SNAILS??  Did someone fall on a snail? or a snail fall on someone's face and after sitting with a snail on their cheek for a while that someone thought,'This feels gooood. I shall market it'?..or was it someone who was bored and wanted to see exactly what people would buy?? I expect it is very expensive and you might do just as well to buy a couple of snails, one for each cheek and sit about with a little gastropod doing its thing. I shall not be joining in with that.
The slimy End

Friday, 8 January 2016

the callousness of youth

So..this morning I had Dancing Girl falling about on the kitchen floor, laughing hysterically until she was weeping. How did this come about, you may wonder? Well , we were sharing dreams that we had had. She had had a dancing related dream and I, well, I had had a dream about a whale which was 3miles long. Yes, 3 miles. It was chasing me. Bearing in mind my swimming skills are next to none, and in the dream I was trying to escape said 3-mile long whale by swimming as fast as I could (which wasn't very fast) with the whale was gaining on me (hardly surprisingly), it is hardly any wonder that I am so tired today! There is probably some deep and meaningful thing about dreaming that you are being chased by a 3mile long whale...but I blame the Octonauts which Jboy insists that we watch. (Octonauts are a bit like a pre-school version of Stingray for those of you old to know what that is!!)(I always wanted to be Aqua Marina and spent many a happy hour lying on the living floor,flailing aka swimming, when I was a child)(I didn't get out much even then) Dancing Girl wept with I recovered from my nightmare!! The callousness of youth!!!
Here's a whale joke:
 A man in a cinema notices what looks like a whale sitting next to him.
 "Are you a whale?" asked the man, surprised.
 "What are you doing at the movies?"
 The whale replied, "Well, I liked the book."
Whale, I found it funny
The End

Thursday, 7 January 2016

letting go

Dancing girl will be going back to school soon and I will be sad. As will Jboy. He misses her terribly when she goes. His world will once again be shaken. Letting go is such a painful thing....... you'd think it would get easier with each child that goes. It doesn't. See you on the other side.
The End

Is there a dancer in the house???? know you have a dancer when there are hair pins everywhere, the radiators are lagged with leotards and tights, you hum The Sugar Plum Fairy music (or equivalent) while pushing the trolley round the supermarket, the computer is set to a dance suppliers page, the living room is littered with bits of kit designed to loosen muscles   but which look like instruments of torture and your girl (in my case) stands in front of you saying, 'What do you think of my it better like this........or this?' and you have to admit to being able to see no difference....even Jboy knows the phrase,'I'm just dancing'.   And today, bearing in mind the holidays are coming to an end and she will be back at ballet school in two days time, I was informed that a certain pair of dance shoes, needed and vital for next term are required. Now. Or indeed preferably yesterday.  Supermum (and the internet) to the located, ordered and an exorbitant amount for express postage paid and they should be here in time. What did we do without the internet????
Bet Fred Astaire never had this problem.
The End

Wednesday, 6 January 2016

Jboy and the head pushing of my lovely chums gave me a book for Christmas called "642 Things to Write about" which is full of amusing things about which to write (funnily enough). Amusing things such as 'explain to your boss why you spent £5000 during one business meeting', 'describe your most transcendent ice cream experience' and 'what your desk thinks about at night' but the one which M found most amusing is 'Boxers or Briefs? Discuss'. Now, his mind did not go immediately to items of male underapparel but rather to the idea of 'pugilists or proctors' and the rather cerebral idea that the pen(as represented by the proctor) is mightier than the sword (as represented by the pugilist). He suggested that I might like to muse over this interpretation. However, as I was being pummelled by my own personal pugilist at that point, my primary thought was ,"OW!"  Jboy has discovered that he likes  to push down heavily on the heads of his many singing animals as they serenade him with the result that the singing creature in question sings its deeply meaningful song , such as We wish you  a merry Christmas,in a distorted tone which he finds absolutely and completely hilarious. He has, however, extended this downward pushing of the head to me and my head. Does he expect a)me to sing in a distorted tone which will send him into paroxysms of laughter? or b)my head to disappear completely into my body  only to reappear suddenly moments later like some giant maternal jack-in-the-box, which would be scary but probably also hilarious? Either way, it is not a comfortable experience.
Yours, with an increasingly shortened neck,
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Tuesday, 5 January 2016

Jboy and his gutteral utterances

So...something interesting (well, it interested me) was voiced at the weekend.  We three, M, Jboy and I, went to visit M's aged aunt. Since M's mum died in the Summer we have seen a lot more of AA(aged aunt) which has been lovely. At the weekend, there we were, having a postprandial sit, when AA suddenly said,"Doesn't he (Jboy) have a voicebox?" What a surprising and interesting (there it is) question.  Why would she ask such a thing? Of course he has a voice box. He may not talk but he does make noises....quite a lot of the time. Indeed he makes many a guttural utterance. In fact there was a memorable occasion, just after Jboy's voice had broken ,when I was leaving the room and thought I heard M say,'Oi!!'in a manner to which I instantly took offence. I whirled round in a flurry of indignation at his tone of voice. "What?" I replied in my own tone which left him in no doubt as to my displeasure. A slightly surprised M said,"It wasn't me...." Then I spotted Jboy, looking  at me. He had spotted that I was leaving and was essentially asking me what did I think I was doing and where did I think I was going, thank you very much?? and had I asked his permission? NO!!! Oops. I needed to do a bit of apologising to M..but thankfully he is very forgiving and just found it amusing. So, Jboy IS vocal. He likes to try to copy sounds  and although he can't always replicate the things he hears, he does his best to try. So it was interesting that AA had never heard him vocalize. On reflection we realised that Jboy had largely been silent throughout the visit and actually often is in unfamiliar places. So, we learned something new about our boy...he is only vocal where he feels secure.
you learn something new every day
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Monday, 4 January 2016

money money money....

hmmmm (puzzled face)..I have had notification that we will have to pay a not inconsiderable sum (for us) towards Jboy's Most Marvellous Day Centre from December. It has hitherto been free. On asking why this will be, I have today received the reply that his benefit will increase by £40 per month..... MARV.  But the payment to the council for his services, most marvellous as they are, will be almost three times that per month. I am confused." Here, Jboy have this...but then we will take that and more from you!! Happy New Year".  I am left wondering how that works!!! Maths was never my strong point.In fact I am number blind basically but even I can see that the sums do not equate.
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I must just say that The Most Marvellous Day Centre is indeed MOST Marvellous and without it we would wither and die, but it is just a bit of a shock.

a festival of Footwear

So...not only do I have a Forest of Coats and a Feature of Hats, but I also admit to having a Festival of Footwear. (Those of you who know me and have been to our house will be able to confirm this as you have tripped over the Festival  of Footwear,frolicking by the front door...although they are not all mine. Dancing Girl has to come clean and admit that some of them are hers too) I am not a fan of the high-heeled or high fashion variety of footwear but rather favour boots in the Winter and clogs in the Summer (although I do have a rather confusing pair of clogs which are fur-lined...aaargh...when should I wear those????). I am especially fond of Doc Martens and Doc-a-likes. I do love a nice boot. Especially coloured or patterned ones.I had a pair of flowery flip-flops once which were more fashion-friendly than feet-friendly and , foolishly, I failed to take alternative footwear on our holiday to France and ended up feeling very foolish indeed as I hobbled home after our fortnight. M is also a fan of footwear, although obviously in a manly way, and is always attracted to a nice brogue (we shop mainly in TKMAX or OKSCUM (as M still refers to it) for our footwear so it isn't as profligate as it sounds. Quite) Jboy, of course , is not a fan of new footwear for himself. Fancy!
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Saturday, 2 January 2016

imaginifying glass we are , at the beginning of a new year. It stretches out before us like a field of untrodden snow. A page in a notebook, unsullied by ink. The sand on a beach after the tide has gone out, sweeping away all sandcastles and footsteps.  What will it bring?? who knows??
Today we ventured forth into our nearest major city. There is a car park where we like to park at the top of the hill and the walk down the hill into the town is charming. The houses are fabulous..or would have been a hundred years ago. Some are still private residences and some are businesses now but all have that tired elegance and weary beauty of late Victorian homes.  M caught me gazing at them as we walked down the hill.  'Imagining?'he asked. Indeed I was. In my mind, I was there, in the house, skirts rustling, candles on the tree shimmering, someone playing on the pianoforte, dark red wallpaper giving the illusion of warmth, cook making a delicious pie for luncheon. All this in a split second of imagining....When my big ones were little ones, we had a cassette tape(yes, that long ago) of jolly children's music and one of the songs was called 'imaginify'..use your imagination to 'imagine if I' and look at life through an imaginifying glass. I like that. In fact I do that!!! Quite a lot of the time it turns out!!  Where would I be without my imaginifying glass???  Which leads me to wondering if Jboy has such a thing. I doubt that he does. I think he lives in a world of Things which are Right and Things which are Not Right...the rightness and not rightness being determined by him. He keeps us on our toes by sometimes changing the rightness or not rightness of things!! 'Red cloths are my favourite' 'A red cloth, are you mad , mother? Blue is the colour for me' that sort of thing. But what do I know of the workings of the mind of my boy?? He may be even at this moment, in his mind, in a world of fruit pots and singing teddies and very loud penguins. Except he is eating a sandwich so I think his mind is thinking 'Put food in mouth. Swallow. Repeat' or words to that effect. I will probably never know!!!
Happy January
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