Thursday, 31 December 2015

the year of more???

So....deep and meaningful thoughts on the year that is coming rapidly to its end??? hopeful thoughts for the year about to burst upon us??? I don't do New Year's resolutions..never have but I read something interesting was an article about 'more for the New Year' instead of dieting (and failing), trying to be the most marvellous person ever and never ever getting cross/irritated/moody again (and failing), reading all those classics again (and starting them but not always finishing them), starting to learn Russian (again) etc etc etc, it is a new mind set about laughing more, spending time with friends more and establishing relationships more. The article suggests more coffee with friends.Listening to more music. I suppose it is still a kind of New Year's resolution but maybe one I could actually achieve.  What is it that 'young people' say in their texting machine messages YOLO....???So,live this once life in all its fullest.In abundance. Maybe it is worth a try?????
I couldn't have said that yesterday when the Black Dog of being-less-than-cheery threatened to bite at my heels. Why it came I don't know but I am jolly glad it has run away again. Hey. let's be someone to turn to when the Black Dog comes a -sniffing and chase him away for each other, I'm up for it if you are.
See you next year
The End

the sea creature and the pine water his Christmas stocking , Jboy received several terribly exciting toys, including two bath toys. One of them is a little fish which wriggles and lights up in water and the other is apparently some sea creature which spins and lights up AND spits out water.(I wonder if David Attenborough could name it??) Jboy likes the spinning toy but is a bit nervous of the wriggly fish,I think it is a bit too real and, well, wriggly.He also had some splendid bubble bath which smells of pine AND a hippo which plays 'sounds of nature' there we were, in the semi-darkness of silly o'clock, listening to sounds of nature, lit by an as yet undetermined sea creature who was spitting sweetly pine scented water at us. All was calm.Then..something terrible happened....the undetermined sea creature stopped moving and spitting.Much consternation ensued.. AArgh!! New battery alert. So, there I was, with my little short sighted eyes, unscrewing miniature screws in the bottom of a slippery weird sea creature so that I could unearth the AAA batteries and hope that in our drawer of Really Useful Things we had some spare ones. We did! Phew. So then I had to reverse the process and rescrew the teeny tiny screws into the weird undetermined sea creature so that we could once again enjoy it spitting water at us. 
We know how to have fun in our house!!!
Merry New Year
The End

Wednesday, 30 December 2015

silent tears

So..yesterday I posted the best post ever...full of wit, empathy, joy, humour and maxims for was the best yet.......but sadly it lacked someone who knows what they are doing evidently as I managed to delete it before anyone had even seen it.. So you'll just have to take my word for it! ;-)..where's a computer forensics expert when you need one?????
Today ,the Different bus driver(who is the Wrong Bus Driver) arrived Too early. Jboy hadn't had his Vigil. DISASTER.When I eventually managed to get him outside (which took about 5 minutes), he fought like a tiger and a bear rolled into one. I was pummelled, pulled and generally picked on. My glasses were removed and also it felt like most of my hair was being plucked out by the handful. The very helpful escort was trying terribly hard to be terribly helpful but in fact Jboy was getting more and more distraught. In the end I asked the bus to do a circuit of the block and come back. As it drove away Jboy, not really being one to understand consequences of actions,cried silent tears (they are the worst) and his little face crumpled as he was completely confused. I tried very hard  to explain but it is really , really difficult to explain something when you don't know what a person understands. I think most of what Jboy hears is gibberish so I tried to make it easy to understand gibberish by singing the 'where's the bus?' song. The bus arrived (again) so I sang the 'here's the bus' song and after a little grumble, Jboy got on.  This whole process took about 25 minutes. On the plus side, the Driver (Wrong as he is) and the Escort now probably both think I am an all-in westler who sings whilst wrestling  instead of just being a slightly barmy mother. Maybe a new career awaits????
I needed a bit of a lie down in a darkened room after that. (Well, I say what did we do????? we went to John Lewis instead....not quite the same)
The End
Infact I have been decidedly weepy myself today. Weepy Wednesday, perhaps???

Tuesday, 29 December 2015

normal service resumed

So...the day started with unseemly haste as Jboy decided that bed was not for him on this particular December day. As the Parent on Duty, I was less than thrilled but partook in our early morning training session (aka early morning wrestle...definitely a wrestle not a tussle) with as much gusto as  a parent with their hood pulled protectively over their head could do!! After some hours of relentless wrestling on the part of Jboy, I could take no more and crawled up the mountain which had mysteriously appeared in place of our stairs to seek refuge and relief by the magnificent M. He leapt into paternal action and descended the mounatin only to find that Jboy had evidently decided that enough was enough and had gone back to bed!!  The scamp!! When I eventually emerged, bleary eyed, relieved to find the stairs back in their usual place, Jboy had been fed and watered and was ready for the Pavement Vigil. We took up our places and waited....would it be the Right Bus???? What would happen??? The tension was mounting but we had not long to wait and sure enough it WAS the Right Bus. The Wrong Driver and it came at the Wrong Time but then it is those strange days between Christmas and New Year ,when nothing is normal, so we were just happy to see the bus at all!!! After a moment's hesitation when I could almost see the thought bubbles above Jboy's head ('Shall I have a protest pavement roll?' closely followed by 'Nah!'), he clambered aboard and order was restored.
For Jboy, the world has been returned to its proper axis and he can breathe again.
It is a relief to us all.
The End

and a new one just begun....

So...we are not just grateful that we have survived another year with Jboy, but we are all supremely grateful that our other offspring have also made it to the end. As a family we have had a year of delights and sadnesses with the arrival of one and the loss of two, one of whom had a tremendously 'good innings' and the other of whom had no innings at all. So, well done, Bohemianbabe, her Man and the Babelings, MedicineMan,lovely D-I-L and the Medilets, Melodymaid and BassmanBill and Dancing Girl. You are all Most Marvellous.

The End

...another year over is that time of year when one traditionally considers the year gone by and anticipates the year to come. I gather people think about all that they have achieved (or not) and all that they hope to achieve in the coming days. This is the time of year when M and I are just happy to have reached the end of another year, surviving sleepless nights, enduring the battles which are becoming increasingly physical with our Man-boy and endeavouring to unravel the tangle that is his thought process. What the next year will bring, no-one knows. In that respect we are the same as everyone else and can momentarily enjoy being part of the 'normal' community. But then, I have heard that being 'normal' is wildly over rated!!
I wish us all,in the words of John Lennon,

' a happy New Year
Let's hope it's a good one without any fear.'

Merry New Year!!

Monday, 28 December 2015

On the third day of Christmas..... we enjoyed our third day of Christmas. We have had one with MedicineMan, one with Melodymaid and today one with Bohemianbabe. A marvellous time was had by all. Jboy has received many lovely presents and has coped with the newness of them all remarkably well. He is getting better at receiving new things and has almost got into the hang of presents has only taken 27 years!! Better late than never, as they say!!.  Tomorrow he is back at the Most Marvellous Day Centre. It will be much to his relief as he has been carrying his MMDC bag around since Boxing Day in the forlorn hope that he might be allowed to resume his normal routine instead of all this jollity and celebratory gubbins.  Last year,after Christmas, they sent a taxi to collect him. A taxi!!! Not even the Wrong Bus...but a taxi which is utterly and completely Bad and Wrong.  Jboy refused to get in at all so they had to send the taxi away and bring the Right Bus in which he sat in solitary state. Let's hope they have remembered the futility of trying the taxi and have the sense to bring the bus! I don't fancy an early morning pavement wrestle..although I am the Parent on Duty tomorrow so maybe I will already have had my early morning wrestle but at least it would have been in the comfort of my own home. There is nothing to start the day like an early morning wrestle with Jboy. It's a bit like a workout. Perhaps I should rethink these early morning wrestles and think of them instead as time with my own personal trainer...I'll let you know how I get on with that rethinking lark.(actually I probably won't.Don't take it personally)
The End

Sunday, 27 December 2015

never too old to learn,eh??

So..things I have learned over the past two days: it is not a good idea to leave Jboy alone with a candle..ever...(a houseful of people and we all assumed someone else was with Jboy and said candle...but no, I returned to find his cloth of choice turning slowly black over the flame of a rather gorgeous cinnamon-scented candle, scenting the air instead with the rather interesting smell of burning cinnamon)(makes a change from burning dinner!!), another thing I have discovered is that when you buy a musical biscuit tin which rotates ,it is probably wise to remove the biscuits first. Oh crumbs! , a third thing I have found is that it is very difficult to wind, press or generally activate more than three toys at any one given time as directed by Jboy whilst trying to dress him (just call me Octomum), fourthly, it is NOT a good idea to stay up late on the night before your tour of Jboy duty (fancy thinking I could!!! Such foolishness!) and finally (so far) sleeping with a Great Dane of a Jboy on your knee is nigh on impossible.  I imagine, if I were looking at myself with my boy on my lap, it might present a really cosy scene.But I wasn't looking at myself (that would be weird or involve  mirrors). I was beneath the large Vikingdog boy and was feeling numb and number.(no,not number as in 2 ,4 etc but more numb.) What an educational few days!!
Never too old to learn, eh??
The End

Saturday, 26 December 2015

Only 364 days to go.....

So.....Jboy survived the Big Day itself yesterday and as a consequence so did we all. He opened his stocking with much gusto, some gifts being received with greater enthusiasm than others....the singing reindeer was a hit but the talking tombliboo less so. (But then the tombliboo is a GIRL!!!  FC got it wrong there. )Then with breath a-bated we broached the subject of getting in the car would Jboy take this change of routine? Would there be much throwing and flinging?Any rolling on the pavement?Hair pulling? Removal of my glasses?....Christmas may come but once a year but he knows the routine by now...and getting in the car is not part of that routine.  However, after much enthusing by the rest of us, Jboy climbed into the car and we were off. When we arrived at our destination, we found a very pleased Jboy, sitting in the back of the car, surrounded by reindeer wrapping paper. Thankfully he had only managed to open one of the gifts and at least it was one of his!! We had a cracking day.
And we did it all again today. He is now fully stocked with singing toys, noisy cars and things that flash. Oh joy!!!
Only 364 days to the next one!!!!
The End

Thursday, 24 December 2015

it's Christmas Eve!!!!!!!!!!!!!!!!!!!!!!!!!!!!! is Christmas Eve for certain (cinematic reference to Muppets Christmas Carol). YAY!!!  M is taking Dancing Girl to the cinema to see Star Wars, very festive, while Jboy and I stay at home, indulging in a bit of festive cheer in the shape of The Snowman dvd, possibly closely followed by The Muppets Christmas Carol., maybe accompanied by a mince pie (for me).And why not??  Tis the season. My dinner plans have fallen at the first hurdle though as the large piece of gammon-ha(ref:Beatrix Potter The Pie and the Patty Pan) which I smugly bought earlier has 'gorn orf' and smells like the bottom of a pig pen. It is now in the bin.  So .... cheese on toast with festive pickle, anyone???:-) :-)

Merry Christmas to all.
with love from me, Jboy,M and Dancing Girl

Wednesday, 23 December 2015

twas the night before Christmas....

This might be how it goes on 24/25th December:

Twas the Night before Christmas
and all through the house,
A creature was stirring
and it wasn't a mouse.
Twas Jboy.AWAKE!
He was raring to go
Though mama shook her head
and said a loud NO.
Jboy just smiled
and went on his way
Quite unaware that
twas Christmas Day.
Until the stocking of
presents he saw,
in the blink of an eye
they were all on the floor.
Cars and loud things
that flashed, and a teddy!!!
He'd finished his own,
for the next he was ready.
Dancing girl's goodies
were tipped out and thrown.
Ballet stuff!!.Makeup!!
If only he'd known!!!!
No things for him there,
no Jgoodies in sight....
so merry Christmas to all
and to all a good night!!!
(with apologies....)

Jboy and the Christmas TV schedules

So...Jboy and the TV Christmas schedules...Poor confused Jboy. In the mornings he knows that when the Tweenies come on, it is time to start the Vigil on the pavement for the Right Bus. But what has the BBC done??? Changed the schedule. That's what. Now, at Tweenie o'clock, it is QPootle5. Now we love Planet Dave as much as the next chap but what is a fellow to do when the schedule is changed without so much as a by-your-leave??? Outrageous. All letters addressed to Head of CBBC Programming please!!
The End

Monday, 21 December 2015

ambiextremitous? #family #special needs

So..I have mentioned before that Jboy likes to rummage with my hair and with M's beard. He also carries a cloth of choice with him at almost all times. This can vary from a large bath towel to a small handkerchief. When he was little, he, like so many others with Otherabilities, disliked having messy hands or even using his hands much at all. He kept them clasped in front of him, or deeply entangled in my hair.This made exploring his world difficult. Like others of Otherability before him, he would explore with his feet or even his forehead but not his hands. At his nursery they tried very hard to encourage him to explore with his hands. They did this by plunging his hands into bowls of different substances such as cold baked beans, jelly, warm soapy water or playsand. Looking back, it must have been REALLY confusing for the poor chap as some things he was encouraged to put in his mouth and others most definitely not..which explains a bit why he always tries to eat sand at the beach. How is a chap supposed to know??? These days he has no such anxieties and will touch anything and everything but only when HE wants to!!. He still can't discern what is and what is not edible though! 'Jboy, put the coal back in the bucket' 'Jboy, daffodil DOWN' 'Good eating of that sandwich'(Jboy suitable food) ' Don't touch that sandwich'(cheese) Poor fellow! He's still pretty keen on exploring things with his feet but these days he wears gallumphing great shoes which makes it considerably harder. Sometimes in the depth of the night when it is dark, I feel his little bony toes , exploring to make sure I am still there. If the word for being able to use both hands equally is ambidextrous, what is the word for being able to use both hands and feet almost equally as well, I wonder? Ambiextremitous?
Ho ho ho
The End

Sunday, 20 December 2015

he's behind you!!!! I am on the Sunday before Christmas, at 9.30 in the morning, sitting with Jboy as he watches a children's panto on the TV..and I am weeping!!!  Weeping at the sincerity of the kids presenters, acting their little socks off, weeping at the children in the audience as they sit enraptured by the spectacle in front of them, weeping at the parents of the children who are joining in completely (oh yes they are!!) and weeping as my boy chuckles and giggles. My perpetual baby. My lovely 27 year old infant inside a strong, hairy man's body. What DOES he understand of the world? What does he make of this ,quite frankly, chaotic performance on the TV? Who knows???  All I can say is that he is captivated by the scene..and I am weeping. Not sad weeping. Not weeping with self-pity. Weeping that he is having such a lovely time.
Another day in the life of Jboy.......

The End

Saturday, 19 December 2015

the watches of the night

So...the tale of the luminous watch....Like many people, I own a watch. It is a rather plain timepiece but it has a hidden secret. Since I am a shortsighted old biddy, it is a fairly large watch with a very lovely clear and easily readable face, made even more easily readable by the light which is activated by pressing the buttony thing on the side.This is the hidden secret. Now, in the deep watches of the night, when all is dark and quiet and I am wrestling with Jboy and I n...eed to know how much longer this must go on before we can start the day, I activate the light. However, Jboy has now realised that the buttony thing on the side of the watch makes an attractive little light which glows into the darkness. Tis a secret no longer. This night has been punctuated by the boy scrabbling to find the button, me trying to stop him,him scrabbling etc etc etc I know...why didn't I just take the thing off?? Come on!! It was the middle of the night..I couldn't think logically like that(i find it pretty hard to think logically in the light of day but when I have a sleep deprived head, it is impossible). So here we are, watching Cbeebies. Again.
and  now the battery on my watch needs it time for breakfast yet?????
The End

Friday, 18 December 2015

boots and life

This is a picture I really red boots in the sunshine, taken on a lovely day in the early Summer by my lovely friend. It kind of gives an idea of who I am...long skirts, tatty boots, flowers...OK so I am bit of a hippy!!!  It helps me get through!!  Life with Jboy is often a bit of a grind but it is the little things that red boots and yellow flowers in the sunshine.  Or the golden and red leaves of the trees in Autumn or the lights and smells of Christmas. Little things that make a grindy life less grindsome.  I am often to be seen walking around our little town with a grin on my face because  some small thing has just pleased me or tickled my proberbial fancy or was beautiful. And it is amazing how many people smile back.
So, here's to a less grindsome life
The End

my boy

Here is a picture of my boy , taken last Summer, telling us in no uncertain terms that NO he doesn't want to go for a walk thank you very much. He is shuffling off in the opposite direction, with his back very firmly towards us. He was NOT happy!!
Just thought you might like to be reminded of the sunshine!!!

the bag disaster

So...Jboy , being a chap of determined and narrow likes, has a black bag which he takes every day to the Most Marvellous Day is full of spare clothes, lunch and other accoutrements that he might need. Today (Friday), however, the bag broke!!!!  No!!!! and so begins the quest to find an identical bag before Monday. It is 18th December and this is likely to be one of the busiest weekends in the whole world ever and I have to go bag shopping. I shall arm myself with sharpened elbows and enter the fray. So...I am going out. I may be some time.
the things we do for our children, eh?????

The End

Tuesday, 15 December 2015

Jboy returns

So..Jboy has just come home from his weekend away at the Most Marvellous Respite Centre.  It is always a delight to see him when he comes home but after a night of very little sleep, I remember why we are always so relieved when he goes.  It is such a mixed feeling.....pleased that he is home but dreading the onslaught of broken nights that inevitably will be our life until the next respite break. Pleased to see his lovely smiley face but dreading the battles of will which we will have over all sorts of things. Pleased to feel his cuddly arms yet dreading the moment when they turn from cuddling to hurting, pinching, scratching.  When he is NOT here, there is a huge silent hole. When he IS here, he brings activity, bustling and constant movement. When he is not here, the other offspring can have our full attention(as they are all grown and gone, that isn't quite as relevant as once it was) and when he returns, they very nobly allow him and his needs to precede theirs.
So, thank goodness for the Most Marvellous Respite Centre and all the marvellous peeps who look after him so brilliantly there and give us all a bit of breathing space.
The End

Monday, 14 December 2015

M and the Serious Conversation

So...while Jboy was away, M made me sit down for a Serious Conversation. He wanted to talk about taking out a funeral plan for Jboy. Don't get me wrong. Jboy is healthy and shows no signs of needing a funeral plan but M feels that we need to have one in place.  Initially, I did the emotional equivalent of putting my fingers in my ears and singing lalalalalalalala but eventually I realised that I had to be grown up about this and we had The Conversation.  It causes me such internal pain to even think about it...but I know it is the sensible thing to do.  I just want to lie down and cry, to be honest, when I think about it. However, I have agreed to it being done but M will have to do.I can't. Not even a little bit.
Being a grown up sucks sometimes.
The End

Sunday, 13 December 2015

the narrow road we are, another weekend without Jboy. He is at his most marvellous respite centre and we have done exciting things like sleeping, leaving cupboard doors open, turning left (Jboy only turns right outside our home) and eating cheese.  Not much perhaps but wild living indeed to us!! Our life IS very narrow and is getting narrower as Jboy gets older and more and more set in his ways would be easy to let it get us down and sometimes it does but mostly, we just live it. Every day. Just live it. Every moment. It isn't always easy.......sometimes it is awful, agony and crippling but it is the only way to be. I don't wish to sound flippant . It is a constant struggle and we often feel weary, battle worn and shell shocked but this is the life we have and we just try to live it.
It is after all , all we can do.
The End !!