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 !!

Sunday, 29 November 2015

new shoes

So... Jboy and the new shoes.....when Jboy started to walk when he was about 8 , it became apparent that even this was not going to be simple.  His toes splayed outwards and his heels rolled inwards...walking was not going to be a walk in the park (!). So..enter yet another professional to our number (at one point we had about 20 professionals of one sort or another involved..but that is a different story). This most marvellous medical professional and his cohort were charged with the task of finding a way to enable Jboy to walk more comfortably and easily.  This they did.  He was issued with a pair of splints..or AFOs as they are known. Not quite as simple as I make it sound. This required a visit to the hospital whereupon a cast needed to be taken of his lower legs and feet, then the cast made into plastic splints which were so designed to bring his feet into proper alignment. Also not quite as simple as it sounds. To make a cast required Jboy to be still. Completely still;. To be completely still while a strange person wrapped his feet in strange stuff then held on to fact, it took 7 people. Yes literally 7. One for each leg, one for each arm (to stop flailing), one for his body, one to cut the cast off when 'cooked' and me manically singing songs in an attempt to calm us all.  This needed to be done every time his feet grew.  It was not a task which filled us with joy and lightness of spirit..... new splints=new shoes. This leads me on to the new shoes.  Being a chap who dislikes change with a passion, new shoes are ,and always have been, a challenge. We have to try to find ones which are as identical to his last pair as possible. Thankfully, these days he just has special inserts in his shoes as his feet have stopped growing but still have a tendency to splay outwards. We now only need to buy shoes when absolutely necessary.  Yesterday was such a day. He was not impressed. They are brown not black and we did not get them from Brantano. He is not happy. Not happy.
Best foot forward
The End

Saturday, 28 November 2015

the loneliness of the long term carer have heard of the loneliness of the long distance runner..well, I am here to tell you of the loneliness of the long term carer.....It all starts off well. A baby with Otherabilities is still a baby and people goo and gush appropriately (and inappropriately). The baby grows into a toddler and is still manageable and containable..the family still fits in, in its own Otherability way. But the toddler continues to grow and the Otherabilities don't go away.  As a family, you start to experience things other families do not...and the gap starts to widen. Time goes on and invitations no longer include the whole family, just selected children. I can understand it...we were a family of many, one of whom no-one really knew how to approach.

Now our boy is  grown  and all the other children have left home - precisely as it should be.

 Our life is not the experience of my friends. Their experience is not mine. The gap gets wider and wider as the years pass by. I am not complaining or moaning or whining, I am just saying it is as it is for is part of our challenge, part of our life, part of being in the Otherability world. We are happy and content in it but the truth is, it can be a lonely place to be.

Jboy is so complex that even if we were invited out left, right and centre, we wouldn't be able to go....but to be asked might be quite nice.

  So, if you know a family with a chap or chapess with Otherabilities,don't be afraid to ask but please don't be offended if they say no.

Loneliness is as loneliness Forrest Gump might have said.

The End

Jboy and the car battle

So....Jboy and the battle of the car....Jboy is a Boy with determined ideas. Sometimes he likes to get in the car. Sometimes he does not. Today, was one of the not liking to get in the car days.  It is hard to know ,when we open the door of a morning, what sort of day it is going to be. We need to prepare ourselves for either eventuality.We gird ourselves accordingly. Once he is IN the car, Jboy loves it and chuckles his way to wherever we are going, directing us very clearly as to whether to have music on or off, whether he wants it to be louder or not..he is particularly pleased if we get stuck behind a tractor (M less so) or a convoy of motorbikes(even M quite likes that). It is getting him into the car which is the sticky was one of those sticky days. Sticky? Today was Supergluesticky. One look at the open car door and Jboy was on the floor. We tried negotiating..tricky with a chap who doesn't understand negotiation. We tried the parental 'Do I need to give you THREE?', a sentence known to strike terror into many a child (What DOES happen when you get to three??? ) but it seemed that nothing would work and we were doomed to a day IN. After the bazillionth time of trying ,and failing, to get him in the car, Jboy stood up, went to the open car door and indicated very clearly that he wanted to get in.....and looked at us as if to say 'what ARE we waiting for?'. In he popped and off we went. M and I in silence, chests heaving with the exertion of a bazillion efforts to get the Boy into the car, Jboy chuckling in the back.
We are left wondering who won the battle of the car?????
The End

Friday, 27 November 2015

The copse of coats

So..Jboy and his copse of mentioned before, I have a forest of coats but Jboy has his own copse of coats.  We are always on the search, a perennial search, for the perfect Jboy coat. Not too thick. Not too thin. Waterproof  but also washable. Not too short in the body. Long enough in the arm. So he has a selection of coats (many also from the most marvellous charity establishments in MaHa). There are reasons for his copse....his coats need frequent washing. He will only wear black coats so we try to have two per season...two thin ones, two slightly thicker ones get the idea. He even has a leather one which I bought from a charity shop..except he looks a bit like a member of the Russian mafia when he wears it...especially when M has cut Jboy's hair (by 'cut' I mean used the hair trimmer thingy on a number 3 . Jboy will not sit still long enough to have a proper hair cut so M follows him around with the hair trimmer thing, diving in when he can,often accompanied by me singing a hair cutting song...hence the number we don't need to do it very often , in theory)  The perfect coat still eludes us...his thick coat is too warm at the moment - his forehead glistens and he starts to smell like a ripening Camembert after a while in this one,and the next one down is too thin and the poor boy ends up shivering as we stand for our bus vigil. (M tried to sneak a gilet (black obvs) into the medium thick coat but Jboy spotted it....they don't call him HawkEye Brooks for nothing...actually they don't call him that at all). So the search continues..
Coats R Us
The End
P.S. Jboy has just recently had his number 3 AND he is wearing his leather jacket. His menacing mafia look is somewhat diluted by the pale pink manly Baby Annabel blanket he is sporting as his cloth today.

Monday, 23 November 2015

the grief thief

So..when a chap or chapess with  extensive Otherabilities is born  something happens that you might not expect to happen.  Grief comes in and hits you so hard you are breathless. Silently screaming, you find yourself in a strange twilight world where you have to carry on with everyday life but inside you are shrivelled with pain. Of course you love your little chap or chapess with every fibre of your being and defend them as a lioness might but the reality is that you expected someone quite different.  The days go by and a new and different reality sets in. You fight for your  little chap/ess as often the world of Otherabilities is a constant battle: fighting for recognition of his or her condition , fighting for funding, fighting for help, even fighting to fit into a world which for you has been turned  upside down and inside out.  Grief often sneaks in and robs you of your joy when you least expect it...that can, of course, be said of anyone who is grieving. There is no cure. It doesn't end. Grief is a thief.

The End

Sunday, 22 November 2015

persistent unreasonable behaviour

So...'unreasonable persistent behaviour'....'what of it?', I hear the cry across the ether..'what is it?', another puzzles, brows furrowed....'oh no, psycho-speak' a moan emits.....well, both of you can relax as i shall explain what i am burbling on about.
While M and I were chatting over coffee and a pastry in the Ikea cafe today(yes ,we ventured to Ikea...why there? because coffee is free on Sundays before 11) ,we pondered on our life together and how we now gain enjoyment and relaxation from the most ordinary of sitting in the Ikea cafe which means that Jboy is contained and happy so M and I have a chance to talk to each other. .  This deep and meaningful thought had come about because we were yet again on our way to m-i-l's house to clear the final bits before the house is sold and a group of students move in (the poor neighbours paled at this news and looked at us accusingly as if we had chosen the buyers especially.....). Life changes often bring about reflection and this is what we were doing.  But what has this to do with 'unreasonable persistent behaviour' I hear you ask.  Well, these are the things parents do for their know, being elbow deep in slurry on a fairly regular basis, or plastered  in a fine coat of pureed something or ,as they get older, being awake and listening for them coming in to make sure they are safe and don't need rescuing from the latest party or choosing to go to Ikea..for fun!!!!!  In the Otherability world,this behaviour continues for much longer. Who would have thought, for example, that we would still be changing nappies and still have those knees which come from constant kneeling on the floor..crocodile skin knees. It is 'persistent' because we keep doing it (whatever 'it' might be) and it is 'unreasonable' because the things we ,and countless others do, is getting up at 1.30 in the morning, or having hair constantly rearranged, being scratched to smithereens (good word ,that) because, sometimes, when my boy is scared or angry  the only way he can express this turns out to be shredding my arm...unreasonable.  Persistent unreasonable behaviour is the technical term I call it love.

Friday, 20 November 2015

house of cupboards

So...Jboy and the house of in our family includes a fair amount of cupboardage. Our TV is in a cupboard, our DVD player is too, our music machine is in a cupboard and the CDs in a separate one. Even the fridge has its own lovely cupboard, made by the ever-resourceful M.  In answer to the question',why?', the answer is of course...Jboy.  We have been through several TVs, at least two music machines and when we came into the room where the CDs  live to find them scattered all over the floor like some giant silvery dragon had passed through, shedding its scales as it went,we decided that the time had come for cupboardage. Consequently, any attempt at media inspired entertainment takes persistence, determination and is not to be done in a hurry. 'Quick, put the TV on....there's (insert name here) on..' is no longer a sentence to be heard in our house.  And the fridge? Well, when we found the lactose intolerant Jboy happily munching on a lump of cheese which he had rescued from the fridge, M leapt into action and constructed a lovely wooden fridge cupboard.  These cupboards are not a recent inclusion in our household but in case you visit us and feel the need for media inspired entertainment or a piece of cheese, I suggest you look for a cupboard.
Interestingly, none of the CUPboards contain cups.
The End

senses and sensibility

So...Jboy and senses and sensibility....many moons ago , when Jboy was born, he was functionally both deaf and blind. He had the equipment but it just didn't seem to be working. So, we had to ask ourselves the question of how to deal with a very poorly baby( the deafness and the blindness were just two of the many things that the poorly little chap had to cope with) who could neither see nor hear us. Well, once we had scraped ourselves off the floor, we knew we had to concentrate on the senses that were apparently working...smell and touch. Smell: I made sure that I always used the same perfume which I sprayed liberally all over me and my clothes so that the smell of roses would reach him before I did so that he would know it was me. I still do use rose perfume to this day but it has become harder and harder to find as the perfume peeps seem to remove rose from their collections on an annoyingly regular basis.  I have found one but it costs several arms and legs to buy so I am less liberal with the sprayage...but thankfully, he can see me now as his vision and hearing kicked in at about two. Touch: I had long hair ( still do but it is now somewhat paler...who knew I would end up as a blonde??) and draped it across him so he could feel it was me. Looking back, this may have been a mistake as my hair is still something he likes to entangle his fingers in but the fingers of a 27 year old are very, very different from those of a little baby but on the plus side, at least I know where he is!!. M used to encourage Jboy to feel his beard (which still adorns M's chin but now looks a little as if he has dipped his chin in some cream) and when Jboy is tired, he still likes to rub M's chin. Jboy can see and hear now but if he is poorly, or particularly stressed or tired .he only seems able to use one of these two senses. Neither one nor the other is dominant so we have to guess which one it is!!!
And sensibility means 'emotional responsiveness' which I think and hope we achieved!
The End
P.S. has anyone else noticed that the mayor in Ben and Holly's Little Kingdom looks like Boris Johnson?    Oh I must get out more.....

(with apologies to all my FB friends)

Wednesday, 11 November 2015

the wall of anti-leakage slips

So....anti-leakage slips....what are they??  They are , in fact, giant nappies.....yes, my boy is doubly incontinent. There. That's that out of the way!

Today is the day when I have to Wait In for the delivery of said 'slips'.  The system is such that I have to remember to contact the delivery firm at least two weeks before the next delivery is due and tell them that , yes, we do need the delivery please thank you very much.  They tell me that it will be on a specific date(on the delivery form that I have to use to ring them to tell them that yes I do need the delivery of  the 'slips') so I do in fact already know the date but I always say,'Oh thank you very much' as if it is a surprise to me...because I am that sort of person.

We get two months worth at a used to be three but who has room for three months worth of giant nappies in their house???

I wait and I wait. Sometimes they surprise me and bring our wall of slips at 8 in the morning which upsets Jboy no end because it is Not What Happens at 8 in the morning....then I have to calm him down, while trying to fit the wall into the house, and while stopping him from escaping outside because if the door is open then that surely must mean we are going to have Our Stand on the pavement and wait for the Right Bus. Often though, the wall isn't delivered until later in the day.

They can never tell me when it will be, not even down to morning or afternoon.

I am not a person who likes to sit about and wait. I like to be out and about.  I can't go in the garden because I won't hear the delivery van/man and if I am deemed to be 'not in', they take them away and I have to go through the whole palaver again.  I can't go upstairs and do housewifely things because I won't hear the van/man.  Not because our house is SO huge that you can't hear a knock on the door but because I have tinnitus which has rendered me a bit deaf and so I CAN'T always hear a knock at the door.

So I am waiting.

When the wall arrives, it actually comes in enormous boxes. I need to remove them from the boxes because they don't fit anywhere. Then I build a wall. It fits in Jboy's room. Acts a bit like insulation. Maybe I could market it????

And today is that day.

So I am waiting.

I have steamed cleaned everything that can be steam cleaned downstairs and it is still only 9.55.

Perhaps I shall have another cup of tea....tea always makes the waiting easier. But no, wait...then I will need the loo and I might not hear the van/man. 

calloo callay

The End

Tuesday, 10 November 2015

Jboy and the transitions

My boy isn't one who likes change.  I know, how many of us do?  But as with many other aspects of his life and make-up, he objects in his own way to things changing.  He won't tolerate big the wrong bus arriving in the mornings to pick him up, or us deciding that we need to go back the way we came when walking (we have to cross the street and pretend it isn't going back) but he also finds little changes perplexing.  Like going into one room from another...he will often bang his head against the has become a bit of a 'tic' really. This is known in the Otherability world as a transition.  He doesn't do transitions well.  He has another 'tic' or maybe a  'tell'...when he is anxious/cross/perplexed he will make a clicking sound with his tongue (think dolphin)...when he does this we know he getting anxious/cross/perplexed and can try to talk him calmly through the transition. Of course it doesn't always work.
For my boy, who doesn't understand much of the world really, these transitions, never mind how small, are scary. Who will be in the room? What will be in the room? will I have to do something in the room? I don't actually know how much he can think these things but then it isn't my job to worry about how much he knows but to help him through every transition and help him know he is safe and loved and it is all alright.

I do my best to do that.

The End

Monday, 9 November 2015

the continuing saga of the respite system

So..Jboy has just enjoyed some time at his respite/short break centre. As indeed have we enjoyed him being there.  However I have discovered that next year in Feb/Mar and April the centre is closed for refurbishment.....AAARRGGHH!!  Jboy will be sad not to have his regular stay away from us where he can watch TV when he wants, play with the fish tank and wrap various members of staff around his little fingers. 

Also , by May I may be hairless!!!!! (stress, Jboy pulling on it.....that sort of thing)

They offered to try to find him some where else to stay but if I tried to take Jboy  Somewhere Else , I imagine a small revolution would take place. So, how to explain to a chap of very limited understanding and fewer words, that he will have to put up with ever increasingly exhausted parents until May.....?

Answers on the proverbial postcard please

The End

Tuesday, 3 November 2015

jolly holidays

So...holidays. What are they all about then??  We don't go far with Jboy at all. When he was little we had to be within easy reach of a major hospital, in case we needed to access the medics quickly. As he got older and more stable we ventured slightly further away and even made it to France!!  However as the years have gone by Jboy has become less and less keen to go away at all.Our last memorable holiday with him was to the Borders in Scotland.  He would only go from the little cottage to the car and back from the car to the cottage(with a drive about in between)...all our planned walks and explorings remained as plans.  It slowly dawned on M and I that maybe he wasn't happy being on holiday at all. I took us a while! We always wanted him to be with us because after all he is part of who we are as a family so we always found houses with downstairs bedrooms and bathrooms for him, in areas that we thought he might be able to access.  But on this particular holiday it was clear, even to us dullards, that he was Not Happy.  We didn't quite know what to do with this revelation.  Did it mean no holidays for us ever again?? 
It hasn't meant that as his Most Marvellous Short Break centre said that we could have up to 7 days long as there were 28 days before and 28 days after these 7 days (so he wouldn't count as being in care) (that old chestnut).  So the year following the Scottish trip, we had a holiday without Jboy. It was weird and scary and sad but also kind of fun and relaxing. We could go into small shops, or art galleries, or walk on uneven ground..the possibilities felt endless. We have had two such breaks without him..I have struggled with guilt each time but on seeing his happy little face on our return, I know that he too has had a ball.
We might make it a bit further next year.....if we dare, Who knows???

The End

Monday, 2 November 2015

the mystery of the respite system

So..our weekend without  Jboy has passed in a haze of sorting and clearing and visits to the tip. Things indeed which we would not have been able to do if Jboy had been with us but I now face a Monday morning, feeling almost as tired as I did last Monday, after a weekend of wakefulness. Hurrah for respite! Once, as I was on my knees (metaphorically)(on reflection perhaps I should have been actually on my knees!!) and asking about the possibility of any more help in the respite department, I was told that Yes I could have more respite but it would mean that Jboy was classed as 'being in care'.  Being in care???  two weekends a month??? what about the rest of the time?? would we not be caring during those hours???  It is a puzzle and a mystery to me. So, when he comes homes and firmly attaches himself to my head, or arm, am I being careless? When I cook his tea, with him trying to throw things into the boiling pans and me stopping him, am I being careless?  Well , no..because we don't have two weekends of respite a month!! Phew! I am not a careless mother after all!

that's a relief

The End

Saturday, 31 October 2015

The High Life

So...our Jboy is at his short break centre this weekend.  The days without him to keep the rhythm of the day going feel very different. M spent the day in the garden doing manly things such as cutting and sawing. He has been a very happy bunny. He is now sorting the last box of his mother's belongings...not quite such a happy thing to do. She died in August and our house has been full of her clothes, papers (dating back to the second world war), bits of furniture and a billion photos of scenes which obviously meant a lot to her but just look like a load of seascapes or fields to us!  He has however just found something which has made us chuckle..he found a pair of know, for the chestal region.. items which resemble chicken fillets....

there are some things you just don't need to know about your mother!!!!

It has made the task a little less dreary though!!

The End

Friday, 30 October 2015

Friday musings

So..I have a selection of children but have chosen not to write about them so I can preserve their anonymity..also I fear that they might never speak to me again if I laid out their lives on a blog!!!

They did so remarkably well, growing up in a household where our lives had to be largely circled around Jboy . The first few years saw us in and out of hospital, with endless visits to doctors, various members of the medical profession or therapists.  They used to form a human wall around the boy when we were out and people stared at him...we walked along, wall first. Quite often my children would stare back until the starers noticed they had been spotted and stopped, usually scurrying away as quickly as possible. Reminiscent of a rodent.

I am pretty sure my other children will never read this so I can gush about them and say how much I love and appreciate them all. Thanks,all.
It has made them unafraid of difference, in others or themselves (I think). They certainly are not afraid of is just Other ability. They see in Jboy so much that others do not see.

So gush gush gush, my children.

The End

Thursday, 29 October 2015

time off for good behaviour?

My boy has developed a non sleeping habit which is all very well except he is 27, with the mind of a babe/toddler and if left alone would damage both himself and the when he is awake, we are awake. We have jokingly suggested to each other that we should just buy an ENORMOUS bed so that we three can all sleep together.  This idea while bonkers is also rather appealing. The idea of NOT having to get up in the cold dark hours of the night, trail down two flights of stairs and put on a jolly parent hat is getting more and more attractive.  Maybe we could turn the whole of his room into one huge bed, with cushions and quilts so wherever we ended up, we could be cosy and you know, the more I think of it, the better the idea becomes.......  Now where could I get sheets to fit a mattress the size of a room??? 

Answers on a postcard please.
The End


Friday, 23 October 2015

Coat forest

I have a forest of coats. I admit it.  However, not one of them cost more than £8.99 as they were all from charity shops. Oh how I love a charity shop!!  Why do I need a forest of coats??? Well, apart from the fact that I love colours and get bored by only having one coat, my boy likes to hold my arm and lean against my shoulder as we walk.  This can make walking tricky, especially going through narrow spaces, but it also means that the shoulders of any coat get a little...well, crusty!  Having a forest of cheap charity shop coats means that I can scrub away at the slightly crusty parts and not worry too much about ruining the coat beneath. I win!

So thank you, small market town where I live, for your generosity in the coat giving department which enables me to walk around largely crust free.


The End

nickiandtheboy I am on this blogging thing. By being here I feel a little intimidated and not a little overwhelmed. What do I write? Where do I start?  I have been writing about my boy (known as Jboy)and our adventures together. He is 27 going on 2 with profound learning disabilities. Life with my boy is a struggle, a challenge and an I thought I would try and share I am