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