Thursday, 31 March 2016

the Most Marvellous Social Worker

So...the most lovely social worker in the world who is on our case, has come up trumps!!!  She has found someone to do my ironing!!!!  I can't tell you how excited I am!!!  ALSO (yes, the joy goes on) someone to help with the cleaning...pushing a hoover around aggravates my chest thing and leaves me uncomfortable for someone else can do it for me!!! (I feel a bit decadent but the excitement of having a clean house has enabled me to overcome that!!) AND (yes, it continues) she has found someone to come and help with Jboy for 7 hours a week..which may not sound much to you but sounds like heaven to me!!!  This will take a little time to set up as we need to find the right person who will be happy with Jboy, with whom Jboy is happy and in whom  we have confidence. AND (yes..there IS more) she has enabled me to go to the local Leisure Centre for swimming or whatever takes my fancy to give me a little space and hopefully get a bit fitter at the same time!  I am almost speechless. Almost!!! So, Most Marvellous Social Worker, you have brought a smile to my lips and sunshine to my weary soul. Thank you...if you are reading this, you know who you are!!!!!! Not only have you read the entire supply of notes on Jboy..which meant such a lot to me because it meant you have taken time to find out about my Boy(and there were a LOT of notes)..but you have sorted things out for us, his weary parents, AND enabled M to have ironed shirts for work. Our cup runneth over!!!! You are The Most Marvellous Social Worker!!!

The End

Tuesday, 29 March 2016

streams of consciousness we are, post Easter break. Jboy was not happy with four whole days without any structured routine. Yesterday he went around carrying his MMDC bag and was very cross when we said it was not a MMDC day. Today, when the Right Bus arrived, it was the Wrong Driver and the Wrong Escort so Jboy almost refused to get on..but then I think he realised that if he didn't, it would mean another boring day with the parents, so he did! Sighs of relief all round!

I realise that my posts sometimes seem to contradict each day I need all the help possible and another, I am saying calmly that this is my life and I just need to get on with it. Both are true. Some days I need all the help possible. Some days I am able to get on with it, calmly and phlegmatically. (Aside, it's funny/weird how some words are just ...well.... phlegmatic).Doesn't everybody have days when they can and days when they can't?? Or is it just me???  I don't mean to bewilder and confuse..I suppose that these jottings of mine are really more streams of my consciousness than coherent, consistent accounts. I started writing them as a means of venting and explaining to an invisible world about my boy, our frustrations and joys, It is  means to keep me sane in a world in which I sometimes feel I am becoming increasingly insane.  How many times can a person watch Shaun the Sheep without a little bit of madness creeping in???? How many nights can a person manage on minimal sleep before reality starts to be a bit blurry???
Life is a constant challenge(not just to us but for many many people) and some days I feel I can climb that particular mountain. Some days I just want to lie in a heap at the bottom.  I KNOW that there are far worse things in this world and people with FAR greater problems/challenges than we have to face. But I can't write about them. I am not them. I can only climb MY mountain.
So I shall continue to stream my consciousness and people are free to read it or not...if it keeps me as bit sane then I need to do it (for me), but no one needs to read it. You have permission never to darken this blogette again!!
FYI:Today I am skipping along the mountain path..just call me Heidi!!

Sunday, 27 March 2016

Sunday speculations......

So..I am reading a book (my friends say my middle name IS Ireadabook)and the above phrase caught my eye.  'NO ONE has ever lived YOUR life with YOUR particular challenges and possibilities'.  The author goes on to say 'YOU have never been attempted before'.(words by the author, emphasis mine)  I really like this notion...I have never been attempted before.  The author is encouraging his readers to live THEIR lives to the full as they can possibly make them within the parameters of their own challenges and possibilities. He encourages us NOT to think about step 17 as we put our metaphorical foot out to step forwards into whatever . We don't have to know step 17..we just need to take step 1 and go from there.
So, equating that to life, real life, my real life with my boy...what does it MEAN???  Well, for me, today (who knows about tomorrow??? or next week??) it means that today is all I need to deal with. No one has ever had to do this before. No one has ever been me before. No one has ever been Jboy before.
 So..while this could be daunting and scary, it is also an adventure. (Bear in mind, my black dog is asleep today, tamed and chained) But today I AM choosing to see it like that. When my black dog wakes up I might see it differently. I might need reminding of this positivity. I do have a brain rather like a butterfly, I land and then I fly away..I read, wax lyrical about a book , fly away and forget what I have read..feel free to remind me!!!
It IS true life is unique. Your life is unique. Jboy's life is unique. There may be 17 steps, there may be 3 , there may be 3000060606...sooooo,here goes step 1
The End

Saturday, 26 March 2016

surface tension

So...Stress.  Stress takes people differently...I function with fairly high levels of stress, my lovely GP says so, so it must be true. A very special friend of mine explained  it this way...many people have lives like a glass of water which is completely full.You know full to the point where the little dome of surface tension  forms..... it might wobble a bit and quiver a little but is generally contained...until one more drop is added. One more thing happens in life. There is one more thing to think about or deal with. Suddenly the surface tension is  broken and water pours over the side of the glass.....stress overflows!!!
So for Jboy who lives a life full of self imposed rules, life must be in constant tension. What if something changes??? What if we expect him to do something new? Go somewhere new? We have mostly learned over the years but this week, we had an unavoidable situation which sent Jboy into a vortex of anxiety. We had a couple of new windows put in and had scheduled the work to be done while Jboy was away at his most unexpected respite so the only difficult thing for him would be meeting the new window in the downstairs bathroom when he came home. However, as is the way, the work took longer than expected and they came again yesterday when Jboy was at home. The van pulled up outside our house and Jboy went into panic mode. He was carrying around his going out bag so we dutifully went out. This also seemed to distress him. Initially, just DG, Jboy and I set off into the grand metropolis while M finished off whatever he was doing at home BUT Jboy crossed the road, went a little way and then stopped. Clearly he was anxious that M was not among our number....what was happening to his world? First a van appears, then people come into the house, then we go out without M!  He would not move. So, thanks to the marvellous invention of mobile phones, I rang M and asked him most politely to hurry up as we were going nowhere. This he did. Good old M but Jboy was very unsettled all morning. On our return home, he paced anxiously and watched and listened as well as any guard. The word hypervigilant comes to mind..It was not a happy day for Jboy, despite all our attempts to make it so. His stress levels were at breaking point. We could almost see the surface tension of his imaginary stress glass beginning to wobble and tremble. M decided that the best thing would be an afternoon of Shaun the sheep or Robbie the Reindeer so, with the froom door firmly shut, M and Jboy settled down together for a couple of hours of pleasant(or tedious depending on which one you might ask) viewing while I took DG for a spot of therapeutic leg massage which unknotted any dancery knots in her dancery legs.  Living in a state of tension is exhausting...the illustration I have chosen for this meandering is the fraying rope. That's obviously another analogy for the whole living in tension thing. Thankfully both Jboy and I are managing to hang on in there with the last thread still intact.  M was able to see the thing which enabled Jboy's stress glass to remain full. It isn't always easy to see this for oneself or even recognise that you are at that stage. I have come to learn over the years that even if your stress glass overflows, or the rope breaks, it isn't the is not pleasant for a while. and some 'whiles' are longer than others but the glass does stabilise again and the rope is mended. So if you are in a state of tension and you are beginning to snap or overflow, hang in there, it will get better. Really and truly. If you have an M to help you watch your metaphorical Shaun the sheep, all the better. I recommend leaning into him or her. If you don't. then do whatever it is that relieves your stress...go for a run, read a book, have a bath, go for a run then read a book in the bath....
As for Jboy, he has just about coped with the new bathroom window..although we have to talk about it every time he sees it. He is probably just checking in case it changes again..after all who knows what will happen in this world of uncertainty????
The End

Friday, 25 March 2016

what I didn't say.....

So....I was thinking that when the very helpful social worker  came and asked me lots of questions about us and our life with the Boy, I wasn't entirely open and honest as maybe I could have been. It is in my nature to cope, to manage, to get on, to try not to complain, to be grateful for what I have and not always yearning for the things I don't (not I do sometimes). So where was I dishonest? Less than open? Well ,when she asked what I would like to happen in an ideal world where money was no object and anything was possible, I said I would like someone to do the ironing. Which is entirely and absolutely true. I have always hated ironing. But what I didn't say was...I would like someone to come and sleep here or at least be awake with the Boy in the night so that we can sleep and therefore be armed and ready to face the days with the Boy. I would like there  to be someone who could come at a moment's notice and take over in those times when I think I just can't do any more or can't face another minute of being mauled/loved. I would like to go out with my husband from time to time rather than always having to  sit mindlessly in front of the TV until we watch the moments tick by when the Boy can have his bath and go to bed which means WE can go to bed and wait for the next day to come around. I would like Jboy to get in the car when we need him to. I would like him to come home from town when we need him to. I would like him to stop shredding the backs of my hands as his protest.Or pulling lumps of my hair out. Or throwing my glasses. Or hurting my neck/head/arm. These latter things cannot be made better by money...even if there was any in the social services budget. I could go on but by going on, I would find myself slipping into a POM (poor old me). There is NO point in doing that. This IS the life we have. This IS the boy we have. Much better to be grateful for someone to do my ironing and get on with the rest of it. Much better to laugh and find beauty. I don't deny these other things that I would wish in an ideal world...but I cannot dwell on them and continue to swim in this current of life. I also know there are people whose lives are FAR more difficult than ours. So I  shall continue to cope and manage and get on but if someone could help me do that by doing my ironing, I would be almost entirely satisfied!

The End

Thursday, 24 March 2016

hot cross mum????

So....we are fast approaching 4 days of Eastery family times ahead..or in our case, 4 days of wrestling and wrangling and general exhaustion as the Most Marvellous Day Centre is closed to give the amazing staff a well deserved rest.  I am trying to approach these days with a positive mind set..trying NOT to think of all the things we won't be able to do, trying to think of things we WILL be able to do. GULP..the list is quite small!!!

The good news is that Jboy had a fab time at his unexpected respite days. We had a fab time without him....I mean we missed him, obviously, but being able to sleep is such a treat..being able to dare to leave the TV cupboard unlocked, able to put a jug of lovely daffodils on the kitchen table without fear that they would be spread liberally around the kitchen within moments, the joy of being able to eat cheese, these are among the little things that I enjoy when my Boy is away having fun of his own. He really does enjoy his time away but he is usually pleased to come home he is pleased and is currently attached to my left arm rather like a large limpet! It's a bitter/sweet thing...we love him completely and absolutely but he is also completely and absolutely exhausting. Our life is not unique...except ,of course, that it is. Each family has its OWN tale to tell ,its own ups and downs.

Just as we are all different families/people with different stories to tell, so we have different ways of celebrating this season.

So, whatever this Easter weekend brings you....I trust that it will be full of joy and peace.

The End

Wednesday, 23 March 2016


no words to say....

So..after the awful events in Brussels yesterday with so many people killed or injured, I don't feel I can write a light hearted ramble today. I feel so sad..for the people affected, for the world we live in , for the future....I am a simple soul really. Wouldn't it be better if we all tried to understand one another and love one another or even just tolerate one another if love is too hard?? I have no more words

Monday, 21 March 2016

unexpected respite is the first day of an unexpected bonus 4 days of respite.  We hadn't expected to have any respite until May so this is an unexpected treat. Jboy was thrilled when he saw his packed bag and on Sunday, carried it around happily and expectantly. This morning, the Pavement Vigil was a joy with a happy chap and a cheery mother. When the Right Bus came, he leapt on with all the grace of a Jboy-gazelle and waved enthusiastically to me as the right Bus pulled away. I returned to the house and had to slow myself down as I do not have to have all my jobs today before the witching hour of 3.30 when everything turns back into pumpkins again and Jboy comes home. I can choose to START my jobs at 3.30 if I so wish!! For the next four days. Ohh. ...the freedom!! I am so pleased that Jboy is clearly so happy to go to his Most Marvellous Respite Centre. The prospect of a few nights of unbroken sleep is thrilling!!!  Who knew that one could feel so excited about such things? Such is the life of a family with a chap who has Otherabilities. I can feel a cheese fest coming on ...or even, sharp intake of excited breath, yogourt or ice cream. The possibilities are endless
The End


Guess what??? Dancing Girl and I WENT OUT at 3.30.....oh yes we did!! and now we are watching a dvd of our choice ie NOT Wallace and Grommit or Shaun the Sheep....and the wildness goes on...we are eating popcorn!!!!!!!Can it get any more exciting???? :-)
Also, today a social servicey person came to do a review of Jboy and of me as his carer and she had not only read all the notes on Jboy (including the ones she didn't really need to read..and there are a lot)but she also had a few practical ideas about helping us/me. HURRAH and how refreshing!!!!

Friday, 18 March 2016

joyful Jboy

So...Jboy started the day with a broad grin and it appears that he has been smiling all day. It was M's turn on duty last night so the first time I saw Jboy this morning was when he ran, yes ran, into the front room, or froom as it is coloquially known in our house, clutching his bag for the Most Marvellous Day Centre..he was grinning broadly..think 'The Joker' but nice...M says that on emerging from the bathroom, Jboy spotted his bag and ran off with it , as fast as his little legs could carry him,as if he was doing something really cheeky. He was certainly chuckling his cheeky chuckle as he ran into the froom. This grin lasted throughout the entirety of Thomas the Tank Engine, depite the peril of the tale ( Thomas fell off the rails...shock horror). all during the joys of Ben and Holly etc etc right up to our newest favourite, Dinopaws which still makes me laugh out loud. We made a very jolly duo as we stood outside waiting for the Right Bus. Jboy laughed at passing dogs, tumbling leaves scurrying along the pavement and was especially entertained by the chorus of crows nearby. He giggled as the bus came and practically leapt on. He has had a lovely day and giggled as he came in about ten minutes ago. I don't know why today should be so much fun but I don't really need to know..just enjoy the joy of the boy...and I do!!!!
The End

Friday thoughts..... of the many books I am reading at the moment is by Brene Brown.  I have just finished a chapter about 'owning our stories'. The author writes that our difficulties and hard times in our lives are part of who we are now (whenever 'now' is). She reckons that if we try to disown or sanitise these hard times and difficulties, then we might find it harder to become 'whole'.  It made me think about my little blogette and FB page (which is sometimes the same thing but not always)..I realise that I have a tendency to write 'lightly' of our difficulties and try to bring a spark, however tiny, of humour into the situation. I don't THINK I am denying the negative or sanitising it...oooh is this a  moment of introspection coming up????...what I think I am doing is choosing to turn things around and see the half full aspect rather than dwell on the half empty, whilst still acknowledging it is there.  Does that make sense? It makes sense in my head. Jboy has made us the people we(M and I) are right now. Living through and surviving the hard times is indeed part of us. Part of our other children too.It does not define us though. I don't think the author of the aforementioned book is saying that by the way and I am taking her chapter out of just became a springboard for my thoughts to do their thing. We all have stories. Our lives are stories. Some have horror stories to tell ...but if they are telling them, then they have survived them . WHOOP!  I know my positivity can be annoying but as some of my posts show, I am NOT always positive. I have down times. I have dreary times. I have had horrible times. But today, and all we have is today after all, today I am able to see that the past makes the present but doesn't necessarily dictate the future. So there's a Friday thought....not quite deeeeeep but deepish!!!  BTW I like hearing other people's stories tell
The End

Thursday, 17 March 2016

not quite so cheery....

So...yesterday I had one of 'those' days...those days when you feel rubbish, and inadequate, you feel a bit of a failure, a bit useless. Don't know why but I guess a person can't be jolly ALL the time! Well, this person can't...and what is the point in pretending I can. None!! no point at all.  I don't know where it came from..possibly the grinding relentlessness of having to find nutritious and suitable food for a chap with a gut as sensitive as a sensitive thing (sorry, couldn't think of a sensitive analogy...). How can I serve his potato today??? And what can I add to make it edible for him and tasty ......aaargh!!! He clearly finds it boring too as he often can be seen, little pointy fingers poised to dig in to my dinner which looks much more interesting. He would eat anything but can't!  Anyway, I found something to keep him fed and fuelled but the 'I'm such a rubbish mother' feeling lasted well into the evening.  I think it didn't help that the local medical centre contacted me.The government has introduced a system whereby all adults with learning difficulties are offered a health check once a year. The Nurse from the medical centre offered me some dates to take Jboy to the Medical Centre for said check. I tried to explain that I wouldn't be able to get him in the building, let alone in to see a doctor who might then require him to wee into a bottle (like THAT is going to happen) and have his blood pressure taken etc. The system is a fab idea but the practicalities of getting someone like my Boy there face impossible odds. I tried to explain all this to the lovely nurse who clearly had NO idea about Jboy at all and asked me to ask his opinion....I explained that he has the mental capacity of a very small chap. She sounded most bewildered. I suggested that they come here or go to the Most Marvellous Day Centre..surely he can't be the only one for whom this is a problem?????? Lovely as she was, the nurse did make me feel as if I 'should' be able to get him there....she suggested driving him down until I told her that I can't actually get him IN the car....yes, on reflection this is what added to my feelings of rubbishness.  Today I am feeling stronger and back to my TigerMother self...We all have 'off' days and THAT IS OK. I need to remember that! 
The End

Tuesday, 15 March 2016

Jboy and the dinopaws

So...this morning as on most weekday mornings, Jboy and I indulged in a little pre-school TV watching..and by that I mean TV programmes designed for pre-school children. Our favourite at the moment is Dinopaws, a charming little programme which has  made me laugh out loud on more than one occasion. This morning the creatures were walking and running..Jboy was copying their actions with great glee.  I love it..the three characters are called Tony, Bob and Gwen..obvious Dinosaur names! They invent words  when they don't know the name of something which is most of the time and when Gwen counts to three, she says,'One and one and one' which is my kind of counting!! The simple cartoon drawings and the simple actions of the creatures appeal to the Boy while the words appeal to is a win/win programme. What I love most though is the way that Jboy studies the characters and tries to copy their movements. He really studies it hard and when he does his version of whatever they are doing, he looks to me with a great grin on his lovely face. He is so pleased with himself and shares his joy with me. It is a lovely moment. I may have mentioned before that some people think that chaps like Jboy with all their Otherabilities 'should' be given the choice to watch or listen to things which are chronologically age-appropriate rather than  emotionally age-appropriate. These things are usually far too difficult, stressful or downright scary for my Boy so I am very happy for him to one of the many who love Peppa Pig, Ben and Holly, the Octonauts and Dinopaws. Where is the harm? I feel there would be far more harm in exposing him to things he finds stressful or scary than there is in him  copying the marching actions of a cartoon dinosaur!! OOOHHH just give me a soap box someone!!!!
The End

Monday, 14 March 2016

Spring is springing.... we are on a Merry Monday in March. The sun is shining and the birds are a-singing...I feel as if I can breathe again. It is the time of year when my mum would have been 'Spring Cleaning' making sure that every nook and cranny had been scrubbed to within an inch of its existence. Curtains down and washed, every wall washed down etc etc. of course my mum was from a by-gone era..even byer-gonner than me...when things became filthy with cold dust and so forth. She also hailed from the industrial North and despite moving to Cornwall when she married my dad, she still felt that everything needed to be cleaned....probably with a capital 'C'.   I started married life trying to emulate this form of housewifery as I assumed it was what one did but found myself failing and feeling completely inadequate most of the time. What I had failed to take into account was that I was not my mum. She loved cleaning and scrubbing things and wiping things and polishing things. She was rarely still, often seen with duster  in hand. She enjoyed not only the finished article but also the process. She was the same with ironing...every item pressed and flattened perfectly. I am not like that. Some might say I am just lazy but I have so many other much more interesting things I feel I need to do.... interesting to me, clearly! So many books to read (currently I have 4 on the go), so many things to write, so many flowers to look at, birds to listen to, people to drink coffee with....I suppose the thing is everyone is different. One is not better or worse than the other. Just different. .... It isn't wrong to love cleaning. I have two darling friends in particular who love nothing better than the smell of a nicely bleached home..I think they find me perplexing. But that's OK. It's all ok. I love them .They love me. Neither is it wrong to dislike cleaning. It's who we are that counts. I used to love the TV programme called Bewitched....THAT's how I would like  to get my housework done..skip the process and get to the finished, cleaned house!! So, if you ever come to my house, and you love cleaning, feel free to don your Marigolds and get stuck in, but if , like me, you don't like cleaning, feel free to sit down with a book....I promise not to judge either way!! 

Saturday, 12 March 2016


So....I recently mentioned (in my blogette on my own black dog) a little book called 'I had a Black Dog' by Matthew Johnstone. I have recently discovered and also enjoyed another little missive by the same author. This time it is a book about Resilience or 'How to bounce back from adversity and lead a fulfilling life'.   There are a few ways to 'grow' resilience, apparently. But  it seems to boil down to having friends, thinking positively, accepting that you can't always change things , hoping and loving. Sounds like a pretty good way to live to me. In fact, on reading the book I realised that M and I DO try to live like that. Obviously we fail often but the secret is to keep on trying...I think .But as I am often reminded, thoughts are NOT facts.  Maybe everyone has to find their own way of bouncing back because the thing that works for me might not work for anyone else. Maybe we all need each other more than we know. As a very good friend of ours once demonstrated, a single matchstick is easy to break but a whole handful of them, stacked close together is much more difficult. I love the people who are my matchsticks!!! The little book  on resilience concludes as follows:

Jboy and the cafe cuddle

So....PDAs...or Public Displays of Affection. I grew up in a very openly affectionate family so when M and I got together I assumed this would continue.  Not inappropriate PDA s you understand..ooh no. That would be bad and wrong.  M ,however, had not been brought up thus so I quickly had to learn to adapt and more importantly for me, not to feel upset or rejected when he didn't like to hold my hand as we walked along. As the years have gone by, he has also adapted and isn't as twitchy as he was.  Jboy has no such compunctions. If he wants a cuddle, he will demand a cuddle. If he wants to sit on my knee, he will sit on my knee. After all, if he was two or three then it would be perfectly acceptable to have a cuddle with mum or dad. Emotionally he is even younger than that so M and I have learned to go with does feel a little odd, I have to admit, to be sitting in a cafĂ©, carrying on a perfectly normal conversation with M, sipping at a latte while on my knee is a very large chap!! One has to develop quite a thick skin to deflect the stares, the comments and the disapproval. As I think I have said before, people are often anxious and a little bit afraid and uncomfortable around things/people they don't when they see a huge moustachioed young man sitting on the knee of an ancient crone (moi) they aren't quite sure how to react. It's ok. I don't expect anything of them. So, M and I just get on with it, riding the waves, drinking the coffee, chatting from beneath the weight of a solid young man.  Actually we often end up laughing at the absurdity of trying to have a normal conversation while being squashed by Jboy and his PDA.  This morning we sat at a table with two sofas and a single chair. We occupied one sofa and the chair so a couple came and sat on the other sofa..they were clearly there to relax, read their Saturday morning newspapers and drink their green tea.  Jboy, slightly anxious that someone had encroached upon 'our' space, reacted by sitting on me. He was a bit unsettled and worried so needed the comfort of familiarity,as might any small child. M and I carried on regardless, enjoying our coffee and our chat with me beneath the Boy. We found it all most amusing but the couple opposite didn't.  So, sorry ,couple-opposite, but when a boy needs a cuddle, a boy needs a cuddle! (and there were lots of other seats they could have chosen......)

Friday, 11 March 2016


So...I found a card today with the words 'sometimes it would help if life came with instructions'.  Initially I thought..'YES' but then I got to thinking...if life came with instructions then surely that would mean that you would know what was going to happen because you would have instructions on how to deal with it? (unless all hypothetical eventualities were covered).......and if you knew what was going to happen, maybe it might not always be a helpful thing? ' I'm going to have to do WHAT?' might think...or 'I'm going WHERE?' You might think you will never cope with some of the things life throws at you. Or maybe that's just me????  In my life as a grown up(going by years rather than state of mind that is) I have had a selection of babies and it amazed me how different each one was. Same genes, completely different beings. My two boys had additional health issues...I perhaps could have done with instructions on how to deal with that.  I AM the sort of person who likes to read up about things. When diagnosed with Labyrinthitis, I read everything I could on the topic. I've also had Hyperventilation a book! a book! My goodness, I am such a wreck! !!!!!!  :-) So what am I saying exactly? I think I am saying that I am glad I didn't know that about any of the stuff that has happened in our lives, in my life. If I had known I would still be caring for a toddler, albeit a huge one, 27 years after he was born, I might have thought I could not do it...instead, one just gets on and muddles through as best as one is able. ' Dealing with a child with profound and multiple learning difficulties and remaining sane' such book. Or at least not one that I managed to find!!  So,one can only ever do one's is impossible to do better than your best (for all the wordsmiths, you will recognise the comparative and superlative here). Actually I quite like that idea......let's be as superlative as each one of us is able.
The End

Thursday, 10 March 2016

shortlived jogging blogging

So...I went jogging once. I was reminded of this fact as I was driving to our nearest large supermarket where I was to meet my lovely chum and her lovely husband. Why did this remind me of jogging? Well, it wasn't the drive as such but rather  the passing of the various joggers en route. My jogging career was very short lived as I soon decided that I was not cut out for such activities.  My second child had not long been born and I was attempting to regain some form of fitness level. The birth of our second child had been fraught with drama. I won't go into the detail as it is his story to tell ultimately but the shortened version is that he was whisked off to Great Ormond Street hospital from where we were living in Cambridgeshire and had a major life saving operation at just under two days old. He was a poorly little chap when he came home, at 10 days, with a massive scar all across one side of his body. He was a bewildered and anxious little baby for a while but soon settled and became a charming fellow. Still is.  But that was the summer when M and I decided that we would GetFit.The weather was really beautiful in the early Summer. We took it in turns to go out jogging early in the morning before he went off to work...well, as I intimated...I didn't find jogging to be the way forward for me! It hurt my knees. It hurt all manner of bits of me and I just ended up back at home, hot and sweaty, exhausted and with two small children to tend to on my is not for me! I soon discovered an evening tap dancing lesson which was and is much more my style. I admire people who jog....such stickability but I guess the truth  is that we can't all do everything. What a relief.  That baby boy is now a doctor and is saving other people's babies.
The End

post birthday blogette

So...I had a most marvellous birthday yesterday. The soggy start was just a blip in an otherwise lovely day. I was taken out for coffee (with birthday syrup) and then taken out for lunch by a marvellous chumette..then, in the afternoon, I spent my booktoken on two books which had been sitting in my Amazon wish list for a consigned to the delete button. Oh the joy! The satisfaction! The excitement of a new book...or in my case TWO!!!. M managed to get home early whereupon I embarked on the Opening of the Cards. Jboy always finds this extremely stressful so I had to temper my natural enthusiasm and glee in order that he did not go wild. ('Jboy goes wild in the kitchen' ..sounds like a children's story from my childhood) I managed pretty well..until it came to the present from M. It was indeed some jewellery, chosen all by himself. This was a present that I did not buy for myself, or wrap for myself .....novel, I know! (no it wasn't a novel )('novel' as in the orginal meaning of the word ie new)(the wordsmith strikes again)(an adventure story from 1960 perhaps??) oh but I was a delight and I did shriek just a little which sent Jboy into a paroxysm of anxiety. General flapping ensued and there was a considerable amount of paper throwing..we managed to calm him with a piece of gluten/dairy free cake and the promise of a delicious and nutritious fruit pot. Order restored, we continued with our natal day celebrations until, exhausted with the excitement of it all, Jboy shuffled off to the bathroom and subsequently to bed. I had a lovely day and don't feel a day over *&^%$££""£$%%^&  oops my computer wouldn't let me type an age!!!!
I was touched and humbled by the cards and birthday wishes that I received. I know I did advertise it a bit (a bit!!!!) but I was still really thankful for all the messages etc. What a lovely lot you are.
The End

Wednesday, 9 March 2016

umbrella down is my birthday...Jboy woke me nice and early at 2.00am. Evidently he thought he should be extra attentive to me today and was a cling-on extraordinaire. Breakfast and bathtime were a fairly subdued affair, apart from the odd minor flood over the bathroom floor that is. Wouldn't do to deviate from the norm! Jboy then settled  happily to view the antics of Ben and  Holly in the Little Kingdom until it was time to don our coats and step out into the weather. Such weather it was too!!! Our Pavement Vigil was a VERY wet one today...we stood for at least half an hour in the pouring rain, with me doing my best to shelter Jboy from the worst of the wet. We started out with a brolly but Jboy and the brolly had a battle with Jboy winning ! My jolly brolly is no more...oh well.  I also started the vigil off with many a jolly song involving rain but as time went on, my repertoire ran out and we stood, largely silent as we soaked. I kept suggesting that we go back into the warm and the dry of the house but he would have none of it so we stood, resolute until the Right Bus came.It was very late and the driver very apologetic. Jboy squelched onto the bus and sat soggily whilst I returned into the house to hang up my dripping coat, extract another from my Forest and bound off to have a birthday bash with my lovely chum.  Jboy has now worked his way through all my robust know, those big golfing ones..and we are down to flimsy telescopic types.  I cannot fathom his objection to brollies, other than that they are not what we have whilst waiting for the bus....who knows. Or his objection to hoods. Or to hats. Or  to any form of meteorological protection. 
Umbrella 0: Jboy 1

Monday, 7 March 2016

a Monday pome (not quite august enough to be a poem)

I'm just a normal mum
doing what I can,
My job is caring
For my Jboy child-man.

I'm no different
or more patient than others
There are many amazing
and most splendid mothers.

And we all need a grump
or a moan or a weep
No child is perfect
('cept maybe when asleep!)

The difference is MY caring role
has lasted years and years
but don't think that I don't
ever drop big,fat,wet tears.

I choose to write things
as my means of escape
and a vent for my frustrations
a place for fears to take shape

I too get cross and angry
and sometimes want to run
But then I look and I see
my Boy, my man-son.

His trusting eyes and smile
broad, wide and free
all serve as a balm
and  a salve just for me.

We ALL need to find
our own ways to cope
Mine is to write or sing
and simply hope.

And if I sound
indulgent and quite soppy,
please give me a break
and don't get too stroppy.

I just wanted to write something, saying that I am not a super mother or the most patient mother ever. I am just me. My patience has increased over the years and I have much more than I did when my big ones were little ones(just ask them!!).  I have had to adjust my thinking..this one will NEVER leave home. It is all very different from how I thought it would be but this is how it is. How we are. How he is. So it is a matter of getting on with it.......I am just ordinary. An ordinary mum with an extraordinary son.
The End
PS ALL my children are's just that Jboy is a bit more out of the ordinarily extraordinary!!! Just to clarify

Sunday, 6 March 2016

another action packed weekend

So...yesterday we did indeed verture forth to a garden centre, as predicted. We scooped up Dancing Girl on the way and off we went. It was a Garden Centre of which Jboy approves and with which he is now familiar so all started off well. However, we had ommitted to remember that today is Mother's Day, Mothering Sunday if you will, and as consequence the Garden Centre was teeming. There were fathers and small children, men without children but carrying large amounts of flowers, was a mass of frenetic humanity, clutching plants, cushions, candles and all manner of maternal giftettes. We made our way to the cafe, Jboy's place of preference , which was of course also full. M found a table(thankfully the table we always have....naturally) in the furthest corner of the cafe whilst I did the deed of ordering. Balancing a tray of scones and an array of hot drinks, I wove my way through the maze of tables and people to the chosen table. We spent a happy half an hour until Jboy had used all his patience, of which he has a limited amount, and then made our way out, past all the people, the piles of pink plants and the buckets of bouquets. However, M and I had forgotten that Jboy likes to do several circuits of the Garden Centre before we are permitted to leave the site...and we had had the temerity to suggest that we left after only the one tour. Dancing Girl and I sat in the car, in an attempt to lure Jboy in but Jboy decided that he needed to sit on the ground and roll around several times before he would agree to enter the car, under protest. M climbed into the driver's seat, chest heaving with the effort, sweat beads forming on his brow while Jboy chortled with glee. And thus ended our Saturday sojourn. Today dawned frostily and beautiful so Jboy took us into town for an early morning beverage. How kind and thoughtful of him. We, of course, had to visit an establishment approved by Jboy of which there are only two but that was fine. M and I chatted and exchanged comments as sharp as the creases ironed into our clothes by my helpful mum.. It was most enjoyable. On the walk home we nearly made the cardinal error of walking on the incorrect sides of Jboy..I have to be on Jboy's left with M on his right..but we momentarily reversed this order. Jboy soon put us right! All is in order once again.Phew!
Just another action-packed weekend
The End

Saturday, 5 March 2016

river of life.....

So...Jboy summoned me early today.  It was cold and dark which always gives me the opportunity to think and meander in my head. Today I was remembering a time, a deep, dismal time, when I turned to a spot of art therapy. What's not to love, I thought. Art. Therapy.The idea was to picture life as a river. We (it was a group therapy) had to picture where we saw ourselves in the river ..imagining it as a cross section. After a certain amount of navel gazing, I realised that at that point I didn't even feel as if I was in the river much..I was in the mud at the bottom of the river...bogged down, life going on above and around me. I felt like a microbe, not even worth a mention. When we placed ourselves in this putative river picture, I explained where I felt I was.  I was shocked when the therapist dismissed my thoughts as 'ridiculous' and not in the spirit of the session.  What sort of therapy was this???  it didn't help me feel better about my self or my situation, I can tell you.  So, what did I come away with from that session???  Well, apart from thinking that the therapist wasn't much of a therapist, it made me determined to allow myself to feel whatever I felt. It is OK not to be ok. It is OK not feel like you are coping. I didn't fit in with this particular therapist's agenda. I had presented her with a scenario she wasn't expecting and instead of embracing that, she made me feel belittled.  I no longer feel like I am at the bottom, or indeed,  beneath the bottom. But I did. And it was ok. It didn't last forever. So wherever you are in the river, it is OK. IT IS OK.  and it will not last forever.
The End

Friday, 4 March 2016

Navel gazing

So....navel gazing....or omphaloskepsis as it is known was originally was a method of meditation but now has other connotations..which are more negative than positive. As always I can only speak for myself but as the parent of a person of Otherabilities, I am often in a position whereby I find myself looking inwardly, or navel gazing if you will. I don't see it as necessarily a negative thing but a survival method!   I am often pinned to one spot by my 27year old child-man, unable to slough him off he is very strong...... so I submit to the pinnage and spend the time thinking. Today, for example, he was watching a dvd (Robbie the Reindeer) on a loop. After the first few times of watching, one's mind begins to go a bit numb and one's eyes begin to glaze over. Pinned as I am, rather like a butterfly, I would love to be able to pick up a book and browse the other world within the pages but reading is Not Allowed.  He will not permit me to go to sleep either so, in order to keep some small measure of sanity, I allow my mind to go where it will.  My mind has a very active life (unlike me) and ranges from planning to holidays I will never take, to designing extensions to the house we will never have or clothes I will never wear, books I will never write or read but I also think about the life we actually have.  M and I got together 40 years is that possible?? don't be ridiculous..surely we can't be that old???? We have been through a lot together and we still like each other!! which is nice. There have been good times and bad times, ups and downs. I know that this isn't the case for all couples though but for us, we have managed to cling to each other as we have been flung into the raging stormy ocean of life on more than one occasion. As Pollyanna in the eponymous book by Eleanor H Porter says, we can be glad about that.
Navel gazing isn't all bad. If can extract the good things in your life from the mass of stuff that swirls around in your head, navel gazing can be helpful and positive. So, let's big it up for OMPHALOSKEPSIS!
The End

food fads and the rest

So..after my culinary caper with the green soup, I have been thinking about food....and I was thinking especially about my offspring and their various foody issues when they were littler and how that, at the time, it seemed dreadful but how as they have grown, they almost all eat anything. In no particular order here are some of my offspring's foody child would eat piles and piles of fried mushrooms as a toddler. It was a food of preference and yet now, that child, now grown of course, cannot bear to be in the same room as a mushroom (well, almost); another would only eat puffed wheat for every meal with the occasional satsuma thrown in and yet another loved fruit so much that it was the Christmas present of choice. A fourth (but not the fourth) would only eat cheese. Jboy ,of all of them ,would eat anything given to him , apart from ice cream which I think was just too cold. I think he probably would still eat anything if given the chance. He isn't. I have compiled lists of the foods which he can and , more importantly, cannot eat. These lists were given to both the Most Marvellous Day Centre and the Most Marvellous Respite Centre. Someone at the MMDC once decided that either I was just being a fussy parent, or that this limited list could not possible be right or maybe they hadn't seen the list, or didn't understand that these were foods that he CANNOT eat and not just foods that he does not eat. Important distinction. In their wisdom, they decided to give Jboy a full salad alongside his jacket potato and told me proudly that they had 'managed' to get him to eat it all up. The problem has never been to get him to eat.....the problem is his body keeping it in!! Sure enough (those of a delicate disposition should look away now), later the full salad emerged intact and as recognisable as it had gone in. They are always very careful now.
Food can become a battleground so easily.....from this vantage point, many years later, I can say just relax and it will all be OK in the end. (and remember, if it isn't OK, it isn't the end)
The End

Thursday, 3 March 2016

the green soup tale

So....a tale of the culinary kind....I have never had the most iron-filled blood in the world and from time to time have to take additional iron-rich products to help me along. It doesn't help that I can't eat liver (only because it makes me sick) and don't much like many of the other iron rich fodder. So when I found a recipe for 'green' soup(full of iron , very good for you), I thought I would give it a entailed much chopping and slicing and a fair bit of dicing. Once I had assembled the green stuff, put it in the pan and followed the recipe (practically) to the letter , it was ready to go. Seasoned, it simmered until the requisite time. I cooled it before whizzing it up to avoid being splattered with boiling soup...I have learned THAT lesson..and waited eagerly to taste plan was serve the healthy green soup as soup for M and myself but as a flavouring for Jboy's ubiquitous potatoes. Thankfully, I decided to taste the evil smelling brew before dishing it up with a flourish and a TA DAH! I can tell you now that it is a recipe I will not be attempting again.....think of the vilest thing you have ever eaten..this was worse. Not only did it taste vile but it smelled nasty too and it looked like some sinister medieval potion, intended to bring down thrones and end dynasties. It was a broth which, had I given it to Jboy and M with their delicate stomachs, would have produced results unmentionable in polite company. So, it's back to the dark chocolate then..oh well, never mind!!
The End

Boy with the Toy

So..when my big ones were little ones, I used to enjoy reading various Dr Seuss books to them. One which especially stuck, apart from Green Eggs and Ham, was The Cat in the Hat. As I was awake at 3.30 this morning with Jboy, what else would my mind turn to but adapting that poem for my boy??? After all, there is little else to think of at that time of day(Little Else doesn't mind). So here is a very much shortened version of the Cat in the Hat, retitled The Boy with the Toy. (with thanks and apologies to the marvellous Dr Seuss)

The sun did not shine
it was too wet to play
so we sat in the house
all that cold, cold wet day.

I sat there with M
we sat there, we two
and I said,'How I wish
we had something to do'

But all we could do was to
and we did not like it
not one little bit.

And then someone went BUMP
How that bump made us jump
we looked
the we saw him
 step in,full of joy,
We looked
and we saw him
Jboy with a Toy

And he said to us (poetic licence)
'Why do you sit there like that?
I know it is wet
and the sun is not sunny
but we can have
lots of good fun that is funny.

'I know some good games
we could play,'
said the boy
'And I know some tricks,'
said the Boy with the Toy
'A lot of good tricks.
I will show them to you
You will not mind at all
if I do'

Then M and I
did not know what to say,
our energy had
for the day.

'Now now...Have no fear
Have no fear ,'
said the boy
'My tricks are not bad ,'
said the Boy with the Toy
'Why, we can have fun,
if you so desire,
with a game that I call
throw things in the fire'

And that is why we have TWO fireguards around our fire.....

Feel free to finish the poem for me. At  3.30am that's all I could manage!!!

The End

Wednesday, 2 March 2016

don't get in the box!!!! is a week to my birthday.  I still get a childish delight from my birthday and even though we don't celebrate it much these days, inside, I am having a party.  Now that the Others have grown and gone and are busy with their own lives (which is exactly how it should be) and Jboy doesn't know one day from the next and M never has really 'done' birthdays, I am not expecting to be showered with birthdayness but that is ok. I shall just have to do it for myself!!! We can't even go out for a meal easily on the day itself as Jboy won't leave the house once he is in after the Most Marvellous Day Centre has delivered him home. Now that my parents have both gone to that great party in the sky, where no doubt they are having a ball, I could feel a bit sorry for myself BUT I overcome that by buying myself a little gift 'from', I don't wrap it and then act surprised. I am not THAT weird (at this point M would say, how weird are you?? ) but I get great enjoyment from it. Alright. I am a bit weird.
 Lots of people my age are thinking of retiring from work. I still hanker after a 'little' job but I am unable to go out to work because a)I am mostly completely shattered and b)I haven't ever managed to find a job that fits in with Jboy's hours....apart from a glorious spell at the Bookshop where the hours were perfect and I loved it...hey ho!!
We all have to do life in the way that we can and in a way that fits us.... there is no 'one size fits all' way of doing life. I have realised that  I don't HAVE to fit into the box someone else has made for me....I am NOT 'just' the mother of a chap with multiple Otherabilities, I am NOT just a 'woman of a certain age', I am who I am. You are who you are. Jboy is who he is. HURRAH for that!!!
So, go, be yourself today and every other day
The End

Tuesday, 1 March 2016

a Tuesday with the Wrong Bus

So...Jboy and I were buffeted and blown this morning on our Pavement Vigil. How refreshing!!! Those were my exact refreshing, I thought as my hair whipped across my face and my eyes watered. The bus arrived on time but it was The Wrong Bus with the Wrong Driver. It was a white bus...but Eagle-eye Boy spotted that it was the Wrong White Bus. He was not a happy fellow. He started to express his displeasure by trying to sit down on the wet pavement but somehow, by sleight of a handily positioned knee, I managed to 'enable' him to get on. He was duly strapped into position and off he went, clutching his cloth of choice which is today a cloth of midnight blue. It was a close shave.
The End


So...we are now into March. M and I have survived almost two months without respite....only two more to go....Oh, that feels like a really, really long time! The exhaustion with which we live on a day to day basis has deepened rather without the provision of a night or two of unbroken sleep which the Most Marvellous Respite Centre gives us. I was Parent on Duty again feels like only just the other day that I did it last....wait, it WAS only just the other day.  On Sunday we were awake and I was at Our Boy's Bidding (a bit like being at Her Majesty's Pleasure) from 12.45 am onwards least today started at a more reasonable hour. At least today had a 4 at the beginning rather than in the middle.Like a mother of a small child, I am feeling dizzy with exhaustion. I KNOW I should eat much more sensibly than I do but it is so much easier to stuff a Hot Cross Bun in!! As is becoming obvious by the ever expanding waistline!  Yet even in my exhausted state, when my Boy peeps at me and gives me his wide macaque grin, how can I do anything but melt a little inside. He doesn't 'do' waking up on purpose. He doesn't mean to render me almost senseless with sleeplessness. It isn't his intention to grind me down to almost nothing. All he wants is a bit of love and a parent to hug. All we can do is be there and do that....and wait patiently for the respite to resume in May.  Roll on May!!!
The End