Monday, 29 February 2016

My Black Dog

So...I thought I would just write down a few thoughts on my own version of the Black Dog. This phrase was coined, I believe, by Winston Churchill to describe his own bouts of depression. Many people suffer from depression in varying degrees and in various ways. I can only speak about me and mine.

I have had a few bouts of depression in my life. It has snuck up on me and captured my peace more than once. I have also had many years without it in between the bouts so it has always taken me completely by surprise and I haven't always recognised it, even though he (the proverbial Black Dog) was snapping at my heels and even sitting on my chest so heavily that I couldn't breathe!
Depression for me has been sapping, surprising and often left me feeling shocked that I hadn't seen it coming. It has hit me especially hard in times of extreme stress when my brain has been trying desperately hard to cope with all the guff that was being flung my way. I was both physically and emotionally weak, unable to make any decisions at all, forgetful and weepy. I felt such a failure and a weed for feeling like that until someone explained to me that depression is often a chemical imbalance. An actual physical response to all the guff. When you are dealing with a million levels of stressful things in your life, something has to give. It is NEVER any reason to feel a failure. Depression hits and hits hard. There are all sorts of tools to help..including medication. When you are depressed, you need help to find the best tool for you because you can't begin to find it on your own.  Being tired doesn't help either.
I have come to the conclusion that life with Jboy, although rewarding and life-affirming in many ways, is also exhausting and extremely stressful. My stress levels are always functioning at the high end (my doctor told me that so it must be true) and it doesn't take much to tip me into the chasm where my own Black Dog is waiting. So I have learned and am always learning ways to cope. A little book which I read has been really helpful. it is called 'I had a Black Dog' and it is an excellent little book.
If depression hits you, don't fight by yourself. Find someone to help you through. Don't feel ashamed or a 'lesser being' happens and is often unpredictable. Hold hands (metaphorically or actually) with someone who will guide you through and will not judge.
These are my thoughts...not everyone is the same. That's the beauty of being human..we are all so different. Together we make the big picture. If we were all the same, it wouldn't be a picture.
So. embrace who you are. Live the best you can. and Laugh a lot.

Sunday, 28 February 2016

music .......

So...Jboy and I have been wrestling since 12.45am....much as I love him, I have discovered that there can be too much of a good thing!(5.30am ish)
So....Music....M and I (and Jboy) went to a garden centre today (now, there's a surprise). On the way we listened to my car cd of 60s music. My brother was 11 years older than me so I was well versed in 60s music as a child and so was able to sing-a-longa merrily as we criss crossed the Leicestershire countryside.It's amazing how music can so quickly conjure up a the same way that smells can evoke or two of the tunes took me instantly back to me wearing a hideous yellow skirt and jumper (bought for me by my mother and which made me look like a misshapen vegetable) and wanting desperately to have a pair of jeans. ( I wasn't allowed to have jeans and bought my first pair when I went to University....). I also have a car cd of 70s music which is full of songs about heart-break and unrequited love which reflected the age when I yearned from afar for various pop icons and actors...M and I met towards the end of the 70s so love was no longer unrequited...we were, as M said, requited (ahhhhhh). Jboy loves music and during the jolly boppy 60s cd he laughed and giggled but during the 70s cd he was sad and a silent tear even rolled down his little cheek. He couldn't possibly have understood the words but he certainly seemed to understand the sentiments. He often gets upset at music in the minor key..thus implying that music speaks deeper than words do and gets right into the soul of a person. Perhaps there is mileage in someone doing some research into how music speaks to those who cannot....but not me..certainly not right now.I am too weary so I think I shall go and have that nap......
Happy Sunday
The End (2.00pm ish)

holidays then and now a child growing up in Cornwall, we rarely went away for a holiday..why would we? We had the best beaches, clotted cream and pasties, after all!! My mother was from the North...she was born in County Durham but spent most of her life in Middlesbrough.(Interestingly, her brother also married someone from Cornwall and ended up living not too far away from us in Cornwall). Mum met dad in the war, in Blackpool as it happens, and, when they were married she, went to live in Cornwall , with dad's parents and some of his younger brothers, while dad carried on being in the services.  I think it was quite hard for her actually. She was a northerner, a townie, used to wearing high heels and lipstick, and suddenly here she was, in the middle of Cornwall, rural and far from shops, amenities and all other townie things, speaking differently, thinking differently and acting differently. She must have found it very difficult. When I was growing up, we would spend a few weeks in Middlesbrough during the summer, just my mum and I, with her sister. We used to go by train which took hours and hours and hours. I clearly remember the trains...they were the trains which are now seen only on really old films ..individual carriages with  sliding doors. prickly seats and tiny windows. I took my teddy, Edwina, and a little blue and white suitcase, containing all my important things..paper, pens and books. My aunt and uncle lived in a bungalow in a pleasant street in a suburb of Middlesbrough. There were two bedrooms so I had to share with mum which we both coped with remarkably well. My aunt was not a well person and was on a whole load of medications so I was always being told to be quiet, or still. Bearing in mind, I was a pretty bookish child who liked nothing better than a trip to a library or bookshop, being quiet and still was never a problem.  Life on holiday in the North was obviously very ,very different from life in our little Cornish village...the air was different, the people were different, it smelled different, it sounded different...when we went into the town to shop (or actually LOOK at shops), there were SO many and some of them were big enough to have upstairs too..and even had moving stairs. My favourite shop was called Binns, with its several floors, its escalators and lifts. I was entranced by the shop itself, never mind anything it was selling.  The clothes were so different even...much more formal than I was used to. My mum loved being back and trying on all the hats, heavy coats and stiff skirts that she could never wear in Cornwall. My special treat was always one of those paper dolls with paper clothes that had little tabs to attach them to the doll. I managed to build up quite a collection over the years. They kept me entertained for many a fine hour. I loved visiting my aunt and my grown up cousins but I was always pleased to be home again,back to my dolls waiting for me on the windowsill, back to the freedom of being allowed to roam, make mud pies and play with my friends. Sadly this particular Aunt died when I was about 10 so I don't remember going back North after that....

Holidays were always a highlight. One year my mum took me with another Aunt and cousin(Rita..) to a caravan at the Perranporth, just to have a holiday. I remember it being quite 'cosy' aka a bit of a squash in the caravan but most enjoyable.
For Jboy, though, holidays are a thing of terror. He cannot predict what will happen or where we will go or what we will do or who will be there or what we will expect of he hates holidays and as a result, the last few we took him on, being determined to do everything together as a family, were disastrous and stressful..until it dawned on us that this was the case! Bit slow on the uptake! We had one holiday without him. He was in the Most Marvellous Respite Centre but for the last few years we haven't had a holiday at all....and if/when we have one again, I won't be able to go too far away in case we need to get to Jboy quickly. So, no weekends in Paris, or trips to Italy or holidays in Spain (even if we could afford these things) and I shall be content with the odd visit to Norfolk or Suffolk...probably.Although to be absolutely honest, I might not be completely content but such is our life! We aren't the only ones..many families with children of OtherAbilities are in the same situation or sometimes the parents take holidays separately so that the child/young person is stressed as little as possible..One learns to adapt. It isn't always easy but it is necessary.
So, I watch the travel programmes on the TV and read the travel bits of the newspapers, knowing that I won't go....but I can dream!!!

The End
PS forgive my incoherence..I was up with Jboy at 12.45am and have been basically awake ever since (it is 2.42pm) words are jumbling and thoughts tumbling. My point above was that holidays used to be fun and exciting, then with Jboy became points of stress and upset and now we don't have them at all really! Did you get that?????? I am very tired!!!

Saturday, 27 February 2016

A satisfactory Saturday we walked around our town, led by Jboy. He surprised us by going along a road which, when we have invited him to walk that way he has downright refused! So our route to a cafe was circuitous today which suited us!! The cafe of choice is situated in the old library which in turn was in an old corset factory. There are old sewing machines on one wall as a nod to its history. Jboy likes this cafe because it is above road level and if we can get a window seat, he likes to watch the people and any cars going by so it is more of a relaxing experience for us too. Post Cafe, after our statutory stand on the square and our statutory small Jboy-protest, we headed home for a delightful luncheon of mega-crumpets. This afternoon, while M was in the garden, cutting and trimming, Jboy ventured out to join him for all of....oooh ...a millisecond (it was a bit longer).But at least he went out instead of firmly shutting all the doors which is his usual practice. Later, we had the Balancing of the Credit Card Bill..a very stressful time for all of us. M was quizzing me as to several of the entries...until he came upon one which I did not recognise. 'Oh no,'he exclaimed,'FRAUD!' Being a hip and cool dudette (pauses for snorts of derision), I looked up the name of the offending entry on the computer. It was a jewellers. Surely this MUST be fraud!! I haven't bought any jewels. I said as much to M, my levels of anxiety rising....he paused, looked a little embarrassed and said,'No YOU haven't bought any...' The penny dropped. Enlightenment dawned. It is my birthday in about 11 days....maybe I will be getting some jewellery for my birthday!! I better had be!!!! Or words will be said! And this evening, I even managed to create a passable dinner out of fridge remnants. All in all, not a bad day. Jboy is happy - he had a walk, a cafe visit and a reasonable dinner, M is happy- he has been in the garden and knows what all the entries on the credit card bill are(even if he isn't happy about the bill per se) and I am happy.- I might be getting a birthday present this year!!
Most Marvellous
The End

Friday, 26 February 2016

Primary school

The incident of the kitchen candle

So.. we have just had a scary moment...Jboy is evidently feeling adventurous. M was in the kitchen and I was in the living room. I heard M shout . On running into the kitchen I found M with his fingers in Jboy's mouth...Jboy had grabbed at the table candle (unlit) and stuffed it into his mouth...he was basically choking on wax. Just goes to show that he really does have major difficulties knowing what is what. He is ok...we are all a little shaken though...
Thankfully not the end is Friday once again. Thankfully Jboy's foray into candlemunching has left him none the worse for wear but has left his parents still feeling a bit shaken and hypervigilant. So I think I need a therapeutic visit to both a coffee shop AND a bookshop...don't you????
Merry Weekend
The End
So (Friday,part the second) started like many 3.30. I was Parent on Duty, the Chosen parent,the cuddle-bucket du jour.. Jboy and I wrestled and wrangled, he pummelled and pushed until it was morningy enough to start the day proper. It was all ordinary enough with the feast to break the fast, the bath to wash the night away, Ben and Holly duly watched and chuckled at then the normal Pavement Vigil, all achieved in plenty of time to await the arrival of the Right Bus. In due course, the Right Bus came and that was when the ordinary morning turned a bit nasty. Jboy decided that getting on the bus without a fight was not an option for this morning and so ensued a bit of a tussle, with me expertly(middle name Modesty) (not) dodging his flailing fists and deadly cloth flapping(a charming turquoise number today). Oh, how I sang and danced, how I cajoled and encouraged as Jboy flapped and flailed until eventually, to escape the caterwauling mother, Jboy decided that now was the time to get on the Right Bus, but not before he had delivered me a swift left hook (not such the expert at dodging now,eh?). Feeling somewhat dazed, I waved as cheerily as a cheery thing as Jboy, by now smiling, went on his merry way and my day could take on its own purpose. Of course I needed that therapeutic coffee which I partook with my lovely chum and although I looked at books, I didn't buy one.No ,not a one!
Maybe Jboy was thrown more than we thought by the incident of the candle in the kitchen...and the reluctance to board the bus, even Right as it was, was his reaction. We will never know. I DO know , though, that the candle incident has made ME more keenly aware of the diaphanous nature of life. I noticed Jboy's little laughter lines around his eyes today, for the first time and I noticed his menacing mafia hair has the odd silver thread shining in it now. Time marches relentlessley on and ,thanks to the swift reactions of M, so does Jboy.
The End

Thursday, 25 February 2016

Nostalgic Christmas

So...back to my ancient history.....Christmas while we lived at the Top End of the village was always magical. Well, that's how it felt to me....

Our house looked like a children's drawing of a house...door in the middle, two windows at the front downstairs and two at the front upstairs. Going in at the front door, you were faced with the stairs heading straight up to the upstairs floor. These stairs were always, in my imagination, a mountain to climb or a rock face to ascend or the way up to the surface of the sea when I was being a mermaid (downstairs being under the sea and upstairs being the land..obviously). Once I stood at the top of the stairs and wondered what it would feel like to roll down I did. I rolled down those stairs and it was possibly one of the silliest things I did!! My mum, not being a great one for sympathy, told me off and smacked me soundly.....when what I probably needed was a cuddle and a reminder that rolling down the stairs, even if I was pretending it was a hillside, was NOT something to do EVER again!(But. life was harsh in those days for children......)(violins please)(mind you, I never did do it again).
To the left , after entering through the front door, was the Front Room. A squareish room with a squashy three piece suite, an old tiled fireplace and a piano. We didn't use this room except on special occasions.
To the right was the Living Room/dining room.This had comfortable old furniture which had seen better days, a Cornish Range which gave us warmth (well, in THAT room) and in which my mum would cook and the dining table and chairs. It was a rectangular room with a window at either end, one overlooking the front garden and the other looking into the woods behind the house. We had a TV which I remember as being huge and sitting there like an ugly monument, lurking darkly and menacingly. In the corner I had my things...I used an old piano stool as a desk, even before I could write properly, I wanted a desk, pencils and paper. (Stationery is still one of my favourite things to acquire)
This Living/dining room led in to the tiny kitchen where we had a small electric cooker (no gas reached Cornwall) and other kitchen things, including an enormous sink, big enough for me to sit in, even when I was 4 or 5. It was very dark, being long and narrow with the window looking out onto the woods.
Up the stairs were three bedrooms and a bathroom. My brother had the smallest bedroom, painted black (he was a moody teenager!) while I had a room at the front, all my dolls on the windowsill looking out so that they could watch the world go  by while I wasn't playing with them.

So...Christmas and why was it especially magical? Well, it was always in the Front Room , the fire was lit and it was warm, cosy and welcoming.  We never went in this room much normally and when we did, it was cold and unwelcoming. On Christmas morning the door was shut tight. The excitement mounted .... we went in. My family didn't go in for Christmas stockings on the end of the bed..I was, apparently terrified at the thought of a strange man, even one as benign as FC, coming into my room. We had , instead, small piles...usually consisting of books, dolls clothes, pretty things (that was just my brother...hahaha not really, he had Airfix kits and bike parts). The  real tree was always in the same corner with its lights switched on to greet us. They were those old lights, large and multi-coloured on a twisted green wire. I remember the smells of those mornings mostly..the smell of the tree, the wood of the fire, the slightly musty smell that unused rooms have and the overwhelming smells of plastic!! One year I had Wendy house as my Christmas present and when we went in the room, there it was in all its Wendy glory, perfuming the room and Christmas with its scent of plastic, eau de plastique!! Another year I had a Sindy doll...also with a strong eau de was, after all, the reign of plasticity, the era of all things petroleum based and non-recyclable. In the evening, after a day of eating, generally, our little family, my parents, my brother and I, would eat (again) mince pies in the Front room with all the lights switched off.... except the tree lights and the glow of the fire. It felt magical...or is it the nostaligia that is making it magical? Do you know, I don't really care if it is rosy tinted nostalgic glasses that make it feel magical, it truly was to me. I can still remember the feelings of cosiness and safety and deep inner contentment which kind of embody that whole Christmas thing and that is good enough for me...I still love Christmas and all things Christmassy and can feel that sense of Christmassy loveliness at almost any time of the year!!
So, merry Christmas everyone.
The End

Wednesday, 24 February 2016

my Wednesday .....

So...I was Parent on Duty today. It wasn't too bad as mornings go, a small wrestle, a slightly larger wrangle and quite a lot of tussling but that is better than it can be when I alternate between shielding my face from the onslaught of Jboy's scrabbly hands and protecting my hair from being ripped out at the all in all it was a good morning.  It is now 2.30 in the afternoon, I have about an hour before he comes home and it starts all over again and I feel as if someone has opened some taps in my toes and all the energy inside me has leaked out.  This coping without respite is proving to be hard..quite a lot harder than either of us had really anticipated and makes us realise the immense value of having the respite in the first place. How did we ever manage without it??? Manage we did for the first 19 years or so of his life. How was that possible??? Well, we were younger then and he slept through the night then...and the broken night thing/early morning starts have been the know, the one that broke the camel's back. Still, we are nearly at the end of February which means we only have March and April to go (silent screaming).
I was at a mums and tots group today, as an observer. It was a group for children with special needs. Such a thing did not exist when Jboy was little and I remember sobbing as I made a swift exit from an ordinary mums and tots group, feeling as if I had some dreadful contagious disease. I did go to a support group once or twice but Jboy's needs were so complex that I just didn't fit anywhere. Still don't.  This mums and tots group was very accepting and welcoming of all the children and their carers..although I have to say that there were no children like Jboy there and he would have struggled with the noise and roughness of one or two of the children, but it did at  least have the facility for a quiet space with bubble tubes and other sensory marvels. I felt a bit weepy to be honest. He would have loved that room...would love it boy. My forever baby man-boy.
I talked to one of the  mums who is finding the idea of her little chap going to school to be completely overwhelming and terrifying. It is pretty scary with any child going to school and someone else becoming so significant in their little life..but with a child with Otherabilities, it is doubly scary. Will my child be understood? Will my child be looked after properly? Will these (highly trained and marvellous as they are)significant others be able to keep my child from all harm? So I was able to commiserate with her and calm her, to some degree. Just knowing that you aren't the only one who feels like this can sometimes be a HUGE help. You feel so alien a lot of the time, when you have a child with other abilities, that meeting someone else who feels similarly is such a relief. I hope I helped to relieve her a little today.
The circle of life goes on, unrelentingly and I now have about 40 minutes before Jboy comes home so if you will excuse me, I shall have a quiet cup of tea. By. Myself!!!

The End

Tuesday, 23 February 2016

autobiographical guff continued the village where I grew up, it was all vaguely feudal. The local toff opened his gardens once a year to the general populace of the village where we were allowed to walk through the gardens, admire the enormous goldfish in his huge swimming pool sized pond and partake of very small sandwiches and even tinier cakes. The house was just outside the village so on the appointed day and at the appointed time, there would be a ribbon of people (mainly women in their best dresses) trailing along with children dressed in itchy dresses or knife edge sharpened shorts, ankle socks and 'those' Clarks sandals which we all had then. I had a particularly itchy dress which only came out on high days and holidays. It was smocked but the front was so stiff that it was uncomfortable. It was also yellow. Maybe that has contributed to my dislike of clothes in yellow (for me) to this day.
We children were all warned that we had to be on our very best behaviour at all times whilst in the gardens. No running, no jumping, no shouting..basically the very old adage of 'be seen but not heard'! It was all supposed to be a treat but I don't know that any of us children felt that it was a treat but rather something we had to go through to keep the mothers happy. There were tables and chairs all over the lawns where the mothers sat primly, on the edge of their seats, ready to intervene in case we children started acting like children. We were allowed to eat the teeny ,tiny sandwiches and cakes but not too many..we didn't want to appear greedy (or presumably, needy) after all!  We children endured the afternoon until the mothers deemed it to be time to go...such joy! We were not allowed to run until we had left the toff's premises..which was quite a long way as he had a very long drive! But once we were on public land again, we were like creatures set free. We galloped home to remove the horrible, stiff ,uncomfortable clothes and become the slightly feral ( in a good way) children that we liked to be. The mothers all relaxed and drank tea while we gambolled about loudly! That ordeal was over for another year!
At Christmas, the same Toff and his Toffette put on an indoor tea for the village children. Once again we had to be on best behaviour, not eat too much, not be too loud..all those things but this time it was in a church hall. There were games and even a Father Christmas. All very exciting and rather hot.
Here's me (on the left) with Little Friend Susan next to me. I look vaguely terrified. I was terrified!!! What if I ate too much...or was loud....or spilled my drink???? The world would surely end and my mother would surely be furious with me for letting her down. It WAS terrifying! Little Friend Susan had no such worries, I remember and chomped her way through countless sandwiches and bowls of jelly.  How did she dare??? She was exactly two weeks older than me and our fiancĂ© was exactly two weeks older than her so I was always the baby one in the relationship. I wonder whatever became of the toff and his fact, I wonder what became of LFS too..if you know her, say hello from me
The End

Monday, 22 February 2016

Twilight TV

So... we are currently in that twilight zone of post-Most Marvellous Day Centre and pre-dinner/bath/bed routine. It is Jboy's habit to watch some mindless children's dvd and often have a small snooze. Today's choice is WallE which is normally reserved for 3am in the morning. It feels most unnatural to watch it in the daylight!!!  M says that WallE is a happy robot because he has a sense of purpose and achievement. The cockroach meets his attachment needs and his basic needs of shelter and warmth are met. These things contribute to his resilience and well being for the higher purpose yet to come ...can you tell M is a psychologist????  Jboy has now fallen asleep, leaving M and I to discuss the deep and meaningful film playing out in front of us....We live such a profound life. Just call us The Deep and Meaningfuls...actually . don't do that. it would be weird.

The End

Autobiographical guff

So...when you are a child, you have no thoughts about being grown up..except maybe you might want to be a princess, or a ballerina or in my case a mermaid (comes of living near the sea in Cornwall).Possibly less so if you were a boy!! I grew up in a little village in Cornwall. The village was basically built on a hill. It was divided by a main road which went from Truro to Falmouth and for the first 9 years, we lived at the top of the village. Our house backed onto woods, belonging to lord something or other (probably Lord Falmouth) and we children used to run free in the woods, free-range childhood at its best. We made mud pies, dens, played hide and seek, played cowboys and Indians (I always wanted to be an Indian princess and in my head was no longer dressed in shorts and a tee shirt but a fine Native American dress and had long black hair...ah...)and all manner of jolly children's imaginative games. Our village had a corner shop, a post office, an ironmongers and a blacksmith. If you have read Milly-Molly-Mandy (and if you haven't, you really should), my childhood was a bit MMMesque. I even had a friend called Susan. When we were 5, Susan and I were both engaged to the same boy who had liberated two of his sister's rings to give to us ..his father had words to say to him about that as he was the village policeman!! When I was 9 we moved to the bottom end of the village. It was as if we had moved to another country...Top End children didn't play with Bottom End children and vice versa so I had to make a whole new set of friends. It was OK though as we had lanes to wander and haystacks to climb into. No woods but plenty of fields.  There was an old lady who lived in a tin house with hundreds of cats (it seemed like hundreds to us) and we all thought she was a wicked witch so had to run past her house as we made our way down the hill into the valley, or dared each other to walk slowly as we approached her property.....hearts pounding, adrenalin pumping. School did intervene periodically. The nearest school was in the next village so we all had to catch the bus to school. Even at age 4 and a half which was when I started school, I was bundled onto the bus with all the other village children. Top end and Bottom End, altogether. Primary school was fun..we had a progressive headteacher who thought that learning through playing and experimenting was the way to go...consequently we learned how to develop photographs and we had our own radio station in the school, taking turns to be the announcer, producer etc etc. We did a lot of Englishy based subjects but fewer mathematical ones. There were only three classes in the entire school and everyone knew everyone. The older kids looked after the younger ones. Doing English and language based subjects was all very well, but I have never managed to get to grips with maths ....I think it is the way my brain is made,actually and less to do with the teaching
So, when you are young, you have no idea of the things that bother grownups. Being a child is about learning and exploring, reading and imagining, creating and making....who'd be a grown up when there is so much still to do!!!!
I have tried to paint a small picture of life in Cornwall as I saw it!!!  Life wasn't all golden...but it often those bits that one remembers.
Maybe more to follow..who knows!!

The End

Saturday, 20 February 2016


So...Dancing girl has gone back to the place of much dancing. All her leotards and school uniform bits have been washed and smell sweet once again. We went back to her house via the Supermarket and spent a small fortune on nutritious(and some not so nutritious) tasty lovelinesses. Her cupboards are maternally satisfyingly full once again. As we drove along, we sang VERY loudly to the 70s CD which was in the player and especially enjoyed fact we enjoyed it so much that we repeated it several times!! Can't beat a bit of Abba. Abbatastic!! We arrived at DG's house before the track had finished so, of course, we had to sit in the car, singing and car dancing to the end. Once unpacked, we  paid a swift and most enjoyable visit to one of DG's friends where we drank tea, ate chocolate and laughed like drains. Marv! Homeward bound, I managed to stay awake (more singing loudly to the 70s soundtrack). While I had been gone, M had been busy cutting Jboy's hair who now has his menacing mafia look once again. Using a combination of numbers 1, 2 and 4, M has created that tough image for Jboy and once again, Jboy has chosen to dilute said tough image by sporting a rather natty lilac cloth. Now we are ensconced. watching something terribly worthy..if only I wasn't so tired, I might be enjoying learning about the Inca culture..instead I am slowly losing the will to live....
so I must away and await another day of fun, frolic and fantastical adventures...
The End

Thursday, 18 February 2016

.the not so fun funeral plan

So...M has been to the local funeral parlour to set up a funeral plan for Jboy..not that he needs it just yet but one day the day will come and we don't want the Others to be saddled with a bill...I haven't been able to talk about it is far too difficult and painful for me. It makes me want to run away...or eat a mountain of chocolate..or indulge in some retail therapy....however, as I am a grown up (or at least am pretending to be one)I shall do none of these things..(I would have done the chocolate one but we haven't any in the house!!!)
So, on that sombre note, I shall go and browse Amazon........just browse..honest!!!
The End

the bed quest

So...yesterday M and I went on a quest to find a replacement bed for Jboy. The one he has is beautiful. A sleigh bed with a special side made so he doesn't fall out. However, while that was great when he was younger and slept through the night, now that we have to sit with him, the bed is not wide we went on a quest. We searched here and there, high and low. Bed shop people were very helpful but unsuccessful in helping us. One gentleman in a FREEZING showroom tried very hard to help and made all sorts of suggestions but none of it solved our particular problem. We need to source a bed that is near as possible to the bed he already has so that he doesn't panic about it being new and refuse to go to bed at all..which would be a disaster!! So after traipsing around in the cold and the rain, we landed in a delightful vintage tea room. It was steamy from all the wet people going into the warmth of the snug nostalgic tearoom but it was just what we needed to thaw. We had tea, served in mismatched cups and saucers. The menus were written into the front of old books and while I twitch slightly at books being used for such a thing, it was a really good idea as it gives 'reading the menu' a whole new meaning and gave M the chance to read while I browsed all the lovely things you might expect in such a place. I didn't buy anything although the pretty lampshades made me yearn a little. At last, we made our weary way home and I decided to trawl the internet for said bed. SUCCESS ...we found one, we ordered one!!  So, before too long, our nights of wrestling and wrangling may be slightly more comfortable...huzzah!  Maybe, the bed will be SOO comfortable that Jboy will not require our presence at all and will sleep all's hoping
The End

Tuesday, 16 February 2016

where oh where has our respite gone......? the normal scheme of things this would be a respite weekend coming up but it is not a normal scheme of things currently and we have to wait until MAY to have our next respite session. May feels like a very ,very long way away. When it is M's turn to be Parent on Duty, I go to bed hoping that the night will be somehow twice as long for me so I get lots of sleep yet shortened for him so he doesn't have to be up for hours and hours then go to work. Then, on my nights of duty, I go to bed longing for it to be tomorrow night. It isn't that Jboy is particularly difficult (well, he is sometimes) but it is the grinding and relentless nature of having to be awake when my body is screaming to be asleep that is so  wearing.  I really don't know how M manages to go to work at all. On the days after my night on Duty, my dizzy head (started as Labyrinthitis (see ) is so much worse and my tinnitus almost deafeningly a load of banshees in my head! But...we keep on keeping on.  I have learned to be kinder to myself on these days and  to expect not to be able to do all the things I might like to do.
Apparently Van Gogh had a similar eary condition to me...but his reaction of cutting off his ear was a bit extreme really and I don't think I could rock the earless look.
So, bravo M..what a splendid fellow you are.
Roll on May.
The slightly dizzy End

Monday, 15 February 2016

Mother of the Bride .......

So...I am going to be the Mother of the Bride at some point, as yet undecided. I have been having a bit of a personal mini crisis about that....what do I wear?? I know many Mothers of the Bride have the same question...but not quite so many have to factor in the dribble factor of a 27year old toddler or the durability of the sleeves/neckline etc against same 27 year old. The dress cannot be silk (HA! Like it would be) or anything delicate...also, many of the dresses I have found on line have been slim fitting and..well, not me at all!!!!! I need to be able to move quickly and efficiently to stop/catch/prevent Jboy with the speed of a Ninja. I need not to be conscious all the time of my own what on earth do I wear???  I am not doing a hat. Although I LOVE hats, the hats I love are not the sort of hats one wears at a wedding. Anyway, Jboy would flip it off before you can say 'here comes the bride'. And shoes??? I don't really do shoes that, yes. Clogs, yes but shoes????  I mortified my mother on my own wedding day by refusing to wear tights or stockings (it was Summer, for goodness sake) and having flat sandals...she thought I should make more of an effort..I thought it was my wedding.  So , I shall continue the search for the ideal outfit, refusing to conform to the stereotypical MotB things (shudder) but making sure that MelodyMaid isn't cringing when she looks at the photos afterwards.....after all it is THEIR day.
The End

Saturday, 13 February 2016

Saturday evening.....

So..It is Saturday evening so, of course,M and I are pinned once again by the Boy in front of the TV. We are watching a programme about the 1960s. I remember the end of the sixties fairly brother got married, I had a yellow skirt and had a Sindy doll (the skirt and doll were not related to the marriage of my brother). It has made us think about Jboy would have been very different for us all then. I imagine he would have been secreted away in some hospital or school and would have been declared ineducable. Bit scary really. M says he might have been described as an 'imbecile'..makes me feel a bit weepy!!!  I am SO glad it is now. My boy is sitting, cuddling his dad, having joined us in a jolly day ,visiting a garden centre and watching rugby..not locked away, unloved, uncuddled, starved of affection. He may be extremely hard work and may bring me to my knees on more than one occasion but he is our boy. He is loved. He is most definitely cuddled!!! Oops, welling up...
The End

snuffly thoughts I was Parent on Duty and my day didn't start until 3.30 which felt almost luxurious!! Jboy and I now both have the cold which caused much snoring from M earlier in the week so we snuffled our way together through to morningtime proper. Later,as we stood on our cold Pavement Vigil this morning,we, well I, sang many a pavement song to pass the time, much to the amusement of our neighbour beside whose fence we have to stand . Just before we stepped out into the weather, we had been entertained by a jolly children's programme called Dinopaws . I think it might be Jboy's new favourite...I also enjoy it as the main dinosaury character uses words such as 'lovelymost' and 'wondermost' which I may adopt for future usage. Not sure what the appeal is for Jboy but it certainly tickles my linguist's fancy...which isn't a sentence I use every day!! Now, if you will excuse me, I am in mano a mano (or rather womano a printero) combat with far, it is winning.
The End

Thursday, 11 February 2016

A Thursday Ramble..... I was walking home this most glorious February morning, I was thinking....I don't know what reminded me but I was thinking of a programme Jboy and I had watched at some point (the days merge one into another after a while) which was about a little lost elephant..(this was a documentary by the way)..who had been swep' away from its herd by a raging river and had been adopted by lovely lady (obviously not in the UK) (not that there aren't lovely ladies in the Uk but there aren't that many herds of elephants). This little elephant was being nurtured and cared for and brought back to full health, both physical and emotional, by the family who had found him. However,he had a fear of water which had to be overcome before they could let him back into the wild....the way they did this was by gradually introducing him to puddles, then a water hole and finally a large pond/small lake. He was very scared of the large pond to start with but after a little while he surprised them all and bounded into the water, clearly having the time of this life. The sense of fun was evident. The thought that I was thinking as I walked home was about my Boy and HIS clear sense of fun. His Otherabilities are such that, if one didn't know him, one might think he was incapable of having much of a sense of fun and mischief but those of us that know him , know differently. His sense of fun might not be sophisticated and certainly is not word based but he finds many things about life hilarious which is such a joy.Actually, he reminds me a lot of my dad who used to guffaw at things which, in my youthful arrogance, I found tedious and silly. My dad had a particular laugh which Jboy also has and which he could not have learned from my dad so I guess it is a case of generation unto generation.....
The End of Thursdays Ramblings
PS I now also laugh at some of the things my dad found funny. Not sure what that says about me.....

Wednesday, 10 February 2016

Wednesday witterings

So....thus far , today has been Wrestling Wednesday. It started at 2.30 with the call from Jboy and as I was Parent on Duty, down I went, past the automatic movement sensor lights on the stairs, sweeping past the pile of defunct electronic singing toys waiting on the landing in their Limbo as they wait to go to that great Toy Yard in the sky (ie the TIP), opening the enormous stair gate and into the Room of Doom. There, Jboy gathered me in, like a proud and excited fisherman reeling in his haul. So I employed the cocoon (a duvet which M and I have found invaluable as protection against not just the cold of the night but also the pointy, bony feet of the Boy) and settled in for a wrestle....and wrestle we did. But at last, Jboy fell into a dream-filled sleep. How do I know it was dream-filled??. Well, you know how dogs run in their sleep and are clearly chasing or being chased??? Well, Jboy did the Jboy equivalent. He didn't bark but other than that it was a very similar scenario. Then he woke briefly and decided that I needed to use his head as my pillow. Yanking me by the hair, he pulled my head onto his...marginally better than his head on mine as he has a very heavy head. like a cannon ball...where I was made to lie until I could bear it no longer. I managed to release myself from his iron-like grip and rolled ,complete with cocoon ,to the floor. It was still dark but ,on squinting at my magical light up watch, I found the time to be 5 something...morningy enough. Thus began the day proper. I unblocked the kitchen sink, as you do at 5.30am, with my Cling-on companion clinging on tightly, in case I got away. We broke our fast on a fine feast of gluten free fare, washed the bathroom floor(aka Jboy had his bath), then emerged into the day, to wrestle some more.
Have a Wrestletastic Wednesday!
The End
Today I went to buy bananas.........moral of the tale, don't go shopping when you have been awake since silly o'clock!! On the other hand, chocolate is a very pleasant diversion......

Tuesday, 9 February 2016

helping dogs....... have heard of dogs that help people with limited or no vision...and dogs that help people with hearing difficulties...? Well, M told me recently of a dog that helps with Otherabilities. He has heard of a child who was one that did not like to stay in bed (hmmm.sounds famiiar)..and one who liked to run off when outside (also sounds familiar) the family have a dog which has been specially trained to look after the child. (Reminded me of Nana in Peter Pan)At night, it lies across the doorway of the child's bedroom and if the child begins to stir and make those dreaded getting up sounds, it lies firmly and heavily on the boy's legs. When outside, it is attached to the child by a special belt thing, and if the child bolts, the dog sits still so the child has to stop and cannot run into danger. It is an interesting concept. We would need a Great Dane or a St Bernard if we were to have such an animal...but sadly most members of our family are allergic to dogs so it could never it is back to being Parents on Duty. Thankfully, we don't have to lie across the doorway of his room (although we have done that on occasion!!!)(a story for another day)and ,not being dogs, we don't drool. Well, not quite so prolifically anyway.
woof woof
The End

Sunday, 7 February 2016

Ninja steps

So...our house is an Edwardian lovely which we have extended upwards and outwards over the years to accommodate us all, including downstairs facilities for Jboy. M and I have the room in the roof... I hesitated to say that we 'sleep in the room in the roof' because there, quite frankly ,isn't a lot of sleep to be had, except one at a time!! However, the bathroom is on the floor below so if we need to use the bathroom in the middle of the night,we have had to adopt a slealthy ninja approach to descending the stairs. The slightest creak and the Boy is instantly awake. We have learned which stairs creak the most and which floorboards are the noisiest so we creep with utmost care. I don't know M's technique but I employ the slow tiptoe on either side edge of the stairs approach...imagining myself to be weightless...or at least less weighty than I am. Bathroom achieved!!! Then there is the question of what to do when the deed is flush or not to flush??? When THAT decision has been made, the whole thing has to be done in reverse. It is usually easier in reverse as there is less urgency. But,it is an activity not to be undertaken lightly and there has been many a night when one or other of us tosses and turns uncomfortably until there is no option but to adopt our own personal stealth ninja persona...
and then apologise if it's the other one's turn and the ninja approach has been unsuccessful, resulting in Jboy waking even earlier than he might have done had the Ninja been truly ninjaesque.
Living on the edge, that's us!!
The End

Friday, 5 February 2016

Sleep and migraine

So...I have spent about 36hours asleep...lucky me, you might think but unfortunately this sleep was caused by the Mother of all Migraines and sleep was the only way to manage it. Thankfully, M was able to come home from work early to help me and the Exceedingly Excellent Driver of the Right Bus has been amazing....leaving Jboy until last on the drop-off so that I had an extra half an hour at the end of the day. This episode has made us even more aware of the fragility of the support system around us. We have lovely ,lovely friends but of course they have families of their own to deal with..or they are at work. So it has been a challenging few days , mostly for M who has had to deal with Jboy on his own while I have slept and moaned and groaned.  I do not write this to make any friends who might read it feel guilty but I am just being has been blooming horrid. We are just one of many families for whom support is fragile, what do other families do? How do others cope? Time to think of a strategy....thoughts on a postcard please!!!
The End

Wednesday, 3 February 2016

wedding conundrum #2

So....Melodymaid and the most marvellous Bassmanbill are enagaged to be married .  We are so excited and thrilled and a whole host of other positive feelings. I am, of course, struggling, with the maternal need and desire to be up to my elbows in helping with wedding things..thus far , all I have done is be irritating (sorry, lovely daughter....but mothers will be mothers).  The conundrum with which we are or will be faced, is how to get Jboy to the wedding without causing anyone undue anxiety or distress.....and without spoiling my bound-to-be-beautiful outfit. (talking of which, is it acceptable for the mother of the bride to wear Doc Martens????). I have decided that I might  ask someone at his Most Marvellous Day Centre if they can help and be there with us..just as a third party so to speak, to enable full familial participation.  It will be fine. It will all work. I feel it in me bones!!! I AM A LITTLE BIT EXCITED!!!!! (Can you tell??)

The End

PS it is #2 because I wrote one yesterday but didn't like it....hence take two

Tuesday, 2 February 2016

Tuesday musing

So..we had a shortened Pavement Vigil today as the (Right) bus came early but thankfully honour was satisfied and Jboy got on the bus without looking back. As a consequence of this early arrival, I made my way into town earlier than ususal and found myself washed along by a tide of small children ,clutching book bags, followed by grownups laden with rucksacks, PE bags, musical instruments and other paraphernalia of primary school importance. I was swept along by this sea of blue uniforms until we reached a road crossing. Thankfully, I remembered just in time that if you are a grown up, you are a role model for children whether you like it and realise it or not. I was a good citizen and waited for the nebulous green man. (How many times have you spotted small children looking around rather anxiously for the strange man dressed in green as their parents trill' There's the.Green man'?) We have to be constantly on our guard with Jboy when it comes to role modelling as he seems to pick up bad habits very quickly. Take for example the time when M squirted water from Jboy's Sports bottle onto the table to wipe away the slurry....Jboy has taken this as permission to squirt water will nilly, at everyone and everything!!! Indeed M was a victim of his own actions when, one evening ,he came from work, put on his slippers and discovered them to be full of water, with an empty sports bottle lying next to them....squelchtastic! We have to be VERY careful what we model to him!!!
The End
PS.Whilst musing for a moment earlier today I remembered a book I read a long, long time ago when the world was young. It was called 'Kleider machen Leute'..a little German number meaning basically, clothes make the man. It was the tale of a poverty stricken fellow who acquired a sumptuous cloak and on entering the next town, was taken for a rich Polish he acted like one!! He fell in love etc etc.. he was revealed for who he was eventually but love was a nifty little tale. The point ,of course, was about outward appearances and how people often judge and are judged by the way they look..and also how we sort of become what other expect us to be. An interesting thought. How's that for a Tuesday ???

Monday, 1 February 2016

difficult to ig-gnaw...... way that Jboy shows his love and affection is by sitting VERY close to us. With me, he likes to entangle his hand in my hair and 'massage' my a therapeutic head massage without the therapeutic qualities!! With M, he likes to sit really, really close. M has quite prominent collar bone bones and Jboy likes to place his misaligned multiple teeth on either side of said collar bone and ..well.... gnaw! This is quite a new development, one which M finds difficult to ig-gnaw! (sorry), and one which he hopes will pass quite quickly!
Makes the head massage seem much more appealing now!
The End.
PS sadly, today, in the early morning bathtime ,another singing Christmas toy bit the dust. (well, clearly it wasn't real dust...). No,it met its watery end and has gone to the place where all defunct electronic toys go......the shed, on its way to the tip. Farewell, singing Reindeer.You served us well.