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 days..so 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

streams of consciousness

So..here 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 other...one 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.... ugly..like 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!! Yodel..ay..ee

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 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 though....my 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

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 end...it 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

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 always..note..ie 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

hot cross mum????

So....we are fast approaching 4 days of Eastery holiday...fun 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 again....today 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

imagine.....