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Thursday, 5 October 2017

In which I grumble, and I don't.

Sometimes, it is all just too much. But rather than try and explain the absence, I'm going to just get on with it.  Unlike me, I know, but I'm trying to turn over a new leaf.  You know, more of the live and let live,  less of the grumbling.  Except I'm going to start by grumbling.  Well, kind of.  Bear with me.

We're lucky to be able to run two vehicles, but a couple of people have commented that they don't match.  Not match as in complementary colours, but match as in they don't seem like two vehicles that would be owned by the same family.  

The usual transportation is TheCar.  Electric car, boot big enough for the wheelchair, and great for sneaking up on people in when you're in a supermarket car park (seriously - people pushing trolleys laden with groceries rarely look over their shoulders before they veer gently off the pavement > over the road > towards their car - after all, they'd HEAR if there was anything coming, wouldn't they?  No.  Not necessarily).  So, electric car combined with the solar panels on the roof mean we get to feel righteous about the lack of fumes while keeping track of all the free-to-use 3 pin chargers in the city (which are disappearing every month, so we need to buy a lead - can you imagine?  Having to buy a new charger wire for your car 😯?)

There's TheVan, a pretty old, diesel powered thing, which fits all of us in (including the dogs, the wheelchair and shopping when necessary).  But it's a bugger to park, noisy to ride in, and hard work to lift Smiler in to.  He's 16 now, same height as me, and weighs about 65kg (10 stone plus a bit in old money), and lifting him in to TheVan is ... well, it isn't as easy as it was a few years ago, put it that way.
Nothing to do with TheCar or TheVan - this is Meg, our aging kitty cat

The theory behind needing the van isn't, as some may assume, to do with going on holiday (because we haven't done that in ...erm... roughly nine years.  It isn't even mainly about the distance that TheCar limits us to (though that could be interesting when it came to Smiler's six monthly hip checks at Southampton).  It's about it being a van.  A van which, if/as/when it becomes necessary, we could adapt to being able to push Smiler into via ramp or lift, if/as/when he is no longer able to walk.  You can see I'm covering all the bases there - that's because every couple of years there's a new health crisis that makes it appear that that is where we're heading.  In the very early days we were told he wouldn't walk, he wouldn't be capable of learning how.  Then came the seizures that lasted for hours, and meant he was constantly exhausted.  Then the almost organ failure.  Then he started taking steps - with the support of a walking frame and people moving his feet.   Then, by chance, we found out neither of his hips had any socket, and we were faced with him needing a stretcher bed as he wouldn't be able to sit, unless he had major surgery and it all went far better than everyone dared hope that it would.  After the surgery, rehab was a nightmare, and recovery took a long long time.  Then seizures again.  Then Smiler's physical skills began to decline, and no one knew why.  He could hardly walk, then couldn't walk, then couldn't stand.  Then more meds.  Which is why it still feels like tempting fate to believe he won't be a full time wheelchair user in years to come.  I need to be really clear here - I don't consider him being a full time wheelchair user to be the end of the world - I've known to many other young people and their families facing far worse to ever think that.   But it would be a change.  Right now, *whispers*  we don't even have a hoist in the house.  Because he's on his feet,  and so much more stable than two years ago, when he started to decline.  But we never know what is around the corner.  Which is why we still own our horribly polluting diesel TheVan.  Because getting rid of it would feel like tempting fate, like we were proclaiming "hey, look, we don't need a van, he can transfer, he can weightbear, he can walk.  No van here, just a car, like an ordinary family".

But back to TheVan and TheCar. 

Monday, 20 February 2017

Smiler and the Very Specific Spectacles {part 2}


Smiler needed new glasses, but there's this.  Technically he needed new glasses five months ago, after an eye test showed his vision had changed a bit, but ... well, just but.  Or maybe because.

Partly because there's been a lot going on, but mainly because it's always such an ordeal for Smiler, being fiddled with and people having their hands around his head (which he hates with a passion) and puts him in a horrible mood for the rest of the day.  We are reminded all over again how difficult his are, how non-standard, how awkward it is to get frames which work for him.  And I'm in a horrible mood for the rest of the day too, because it's hard work maneuvering his wheelchair around an added-on bit of supermarket, and he's stressed and therefore distressed, and I feel massively guilty because I haven't challenged every assumption that was made about his understanding and his needs.

Complete aside to getting glasses:
You have to pick your battles when you're parenting a young person like Smiler, and you have to accept that you can't make everyone see the incredible smile and the great sense of humour and the twinkle of mostly harmless mischief in those eyes - some people will only ever notice the wheelchair and the jerky movements and the noises.  But every time someone looks at him with pity, it hurts.  Swift and silent and sharp, like a dagger through the ribs, it hurts as I see him dismissed and overlooked, but so often there's nothing I can do.  I can't make people see what I see.  But even recognising that hurts too - a duller pain, a tired ache that clouds my joy in him.  An endless source of parental guilt, feeling I should do more, why didn't I say this or that, why didn't I grab them and force them to acknowledge all the good stuff - all the marvelous jokes he's made, the hugs he's given, the awfulness he's had to deal with and has overcome, and with such grace...but they don't see that - they can't.  And I can't make them.

Back to the glasses. 
So we - I - had put it off.  But when his glasses were sat on (actually properly sat on.  By Smiler.  Don't ask me how - I have no clue) we had no choice.  It was time - it couldn't be put off any longer.  But really, how bad could it possibly be?

We visited Turners Opticians in Fishponds, and it turned out not to be bad at all - not at all!  A lovely lady directed us to her more experienced colleague, but sorted out some admin for us and chatted while we waited for a couple of minutes.  Lovely gentleman listened to the things we needed him to know about this, showed us a couple of pairs that might work -ish, then found some that ticked all the boxes - This has never happened I wanted to shout at him, but I thought that might make me look a bit peculiar.  We've never found a pair that weren't some sort of compromise before, in over ten years of glasses wearing.  He casually chatted to Smiler as he took the measurements he needed (involving nifty little rulers and things), and commented that he would switch out the stiff plastic nose pad bits with softer squishier plastic nose pad bits (there's a chance that might not be the technical term) so they would be more comfortable for Smiler to wear for long periods.  I should point out that by this time I was a tiny bit in love with the man,  A moment later I was certain I'd misheard when he said they should be ready to collect on Tuesday - we're used to that car mechanic type slow inhale and exhale followed by "well, it'll be three weeks I expect, since they're bifocals" - three days (two if you don't count Sunday) seemed ludicrous.  Lovely Man offered Smiler a high five, and we were done.

I did think afterwards that it all seemed a bit too good to be true - maybe my love had deafened me instead of blinding me, and he had meant three Tuesdays time?  Or that they would cost a mere one hundred of your finest English pounds?  Or that they would for Smiler perfectly if only he had that teeny bit of plastic surgery and moved his face two inches further around on his head?

Saturday, 11 February 2017

Smiler and the Very Specific Spectacles


Smiler has worn glasses for many years, and it's always a struggle.  Not in him keeping them on - when he first got them he didn't have the coordination to use his hands to take them off, and once he did I think he was used to them.  Or maybe the various strapping-the-glasses-to-his-head methods that we used actually did work.  But to be fair, those tactics weren't about trying to persuade Smiler that he wanted them on, but more about convincing this miracle of engineering that it actually belonged on his face.

As with pretty much everything when your child has the kind of needs Smiler has, it's all much more complicated than you'd think.  First, there's the eye test itself - Smiler can't tell you the letters on the line one up from the bottom, or if the circle looks darker on the red or the green, or if those letters are clearer with number one, or number two.  We're very lucky in that Smiler qualifies for the specialist team, who either see him (no pun intended) at school or else give us an appointment for the eye hospital.  Of course, once he's 18 he'll no longer be eligible for them, and will have to see an 'ordinary' optician - a prospect that made me feel like my stomach had been replaced by a swirling hole of nothingness when I first found out.  His vision isn't terrible, but his weirdly shaped eyeballs combined with weak eye muscles, epicanthal folds, sensitivity to people's hands being anywhere near his head, and intellectual challenges mean that getting an accurate assessment of his vision is never going to be straightforward.

Then the next step is getting new glasses.

Glasses - it's all about the eyes, right?

Unfortunately not.  A pair of glasses also needs to take into account your ears, nose and the shape of your head.  How bad can it possibly be? I rather optimistically thought to myself when Smiler first needed glasses.  Of course the answer was that it could be very very bad.

Now, I love this boy, really I do, but he has a weird head.  His neurologist once commented that Smiler has "a head that is not, by and large, head shaped; with a face that is not in the place you'd expect his face to be, by looking at his head".  Thinking back, the list of dysmorphic features that clinical staff wrote out when he was born included reference to the size and shape of his head; lack of symmetry of size, shape, location and orientation of his ears; size, shape and positioning of his eyes; and his lack of nasal bridge structure, so maybe I was more naive in those early days than I realise, if I didn't realise immediately just how tricky finding glasses was going to be!



Say you start off with a hundred pairs of frames...


The frames need to be made of metal in order to be able to make all the necessary unique adjustments to try and fit them to Smiler's head, so when you take off those not made of metal, you're left with 65.


Smiler needs bifocals, and so that there is a reasonable amount of glass of each prescription, the lens needs to be pretty large.  Not ridiculously massive, but on the big side.  That takes the 65 pairs down to 18.


As Smiler is under 16, he gets free glasses, to the value of the NHS voucher.  As his glasses need to be regularly fixed and replaced, we don't have the money to pay extra every time, so if we're only looking at NHS voucher priced ones.  That knocks off three quarters, leaving four.


The arms of the glasses need to curve far enough round his ears to have at least a bit of a chance of staying on, which takes the four down to two.


These glasses will be on and off of Smiler's face regularly through the day, so are going to have to cope with being squished by his safety helmet, licked by the dogs while they're licking his face, pulled off not-especially-gently, put back on not-especially-gently, and cleaned fairly regularly (how he gets bogies and gravy and glitter and finger paint on both sides of both lenses on a daily basis is completely beyond me).  They need to be strong enough the handle the handling - which rules out another one of the two.

This means we have a winner, ladies and gentlemen - one pair of frames to rule them all, and if they're luminous yellow or decorated with peacock feathers and look like a pair that Dame Edna discarded for being a bit much, they will still have to be Smiler's glasses.  What they look like is irrelevant, if they will keep the little bits of glass approximately in front of his eyes without driving him (or us) up the wall.

Course, once the frames have been picked out it takes another week or two for them to be made up, then we have to take him in to have them fitted.  Since having a difficult experience at a nearby independent opticians we had always chosen to go to a supermarket, knowing that parking and access are straightforward, even though it seemed sometimes that the people qualified to sign off on glasses for a person under 16 worked only within school hours, or only on Wednesdays during the first half of the year, or only between 10:17 and 11:41 on odd numbered days in months with the letter A in the name.  Anyway, although Smiler had a sight test at the eye hospital in August, I had (oh, the parental guilt) put off getting new glasses as his prescription hadn't changed much and there were always too many other things to do that were more important.  Up until his glasses came home last week twisted out of all recognition - they were kind of folded in half and then wrapped around on themselves, and I'm really still not sure quite how he managed it.  So there was no choice - it was time to go glasses hunting again.  Oh joy.  Rather than go to the supermarket (which is a different one now that we've moved) which were a nightmare with Noah's last month, we opted for a local independent opticians which had been mentioned way way back in August.  How bad could it possibly be, right?

This bad, is the answer, using the 1990's definition of bad, which meant good.
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Monday, 6 February 2017

Short breaks - an update

So, I explained here all about how we reached the point of deciding to go to an agency to find 'short breaks' for Smiler, but things have changed.


After chatting to the manager at the agency and the support worker, we decided to put the initial misunderstandings down to teething trouble, and hope things improved as Smiler got used to her and she became more tuned in to him and his communication.  And so it carried on ... for about a month.

Then one bright Tuesday morning I got a phone call from the care manager, to 'have a chat'.  You know when you can hear in someone's voice that they aren't actually saying what they're trying to say, and they aren't sure how to broach what it is they're actually trying to say?  That.  Anyway, it turned out that the support worker felt she wasn't "clicking" with Smiler, and they didn't have anyone else on their books that had the same sort of skills, so they were very sorry but.


Such a tiny word for all that it encompasses. 

I have a bit of distance on this now, but at the time I was wrecked.  I felt that Smiler - and therefore all of us - had been rejected.  That I'd put him in a situation where he was spending time with someone that didn't see the lovely, funny, kind, cool dude that he is.  Who didn't understand him, and couldn't be bothered to try.  Who felt that he was too much work.  Who felt that being with him wasn't worth the £16ish an hour that she was getting.

Mr and I thought that going to an agency was a safe bet, a guarantee that we'd find someone - after all, he's not *that* tricky - is he?  Instead it has massively increased our worries that are usually meandering along underneath those ordinary life worries - you know, like the car is due an MOT next month and I need to buy toilet roll and she's twelve, what do you mean she needs to pick her GCSE's - I mean the fears about the future of this young man and will he have friends after he leaves school and will he enjoy his life.  

But, distance. Playing Pollyanna's glad game, I'm glad that the support worker was honest about it.  Smiler is pretty good at picking up on non verbal cues and if she was uncomfortable, he was most likely aware of it.  I think she was expecting a teenager who had some behavioural quirks rather than an overgrown toddler with a list of significant health issues.  

It's just disheartening to go to a business which finds carers and support workers to work with older people and those with disabilities only to end up being told basically that we don't have anyone for *your* disabled person.  And it doesn't exactly bode well for finding people to work with him when he's bigger, and potentially more unsteady on his feet and - who knows - with possibly even more health issues.


So we're back to using Smiler's Personal Budget for bridging the gap between his life and the fabled 'Ordinary Life' of an ordinary young person, working to increase his independence (tricky when there's no one other than his parents who can/will be the responsible adult around), and providing him with a short break, as well as us.  

Books is an option - although he can't read, Smiler loves to turn the pages and look at picture books, so he sits up at the dining table in his supportive wombat chair and reads, which means he is safe and secure and doesn't need our intervention or help for maybe as long as ten minutes.  Assuming he doesn't need the toilet or have a seizure or nosebleed or get distracted by the cat or decide he doesn't like this book after all or accidentally rip a page out after getting the shakes or need his shoes taken off because his feet hurt or wants his jumper on because he's cold or he just does. 

Personal Budgets. Choice and control. What a lovely idea.

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Wednesday, 18 January 2017

Short History of our Short Breaks

And I'm back.  I will explain properly at some point, but the short story is that Smiler was unwell, and losing skills at an alarming rate.  Now he's levelled off and starting to pick things back up, and we have a preliminary explanation which is much less scary that some of those we've been given over the last few months.

So on with the show.  The sock photos have nothing to do with the content by the way, they're just socks that I knitted and I like them and I think they're pretty.  But absolutely not relevant.

Stripy and spotty and rainbow-y socks. Oh yes.

We've been pondering what to do with Smiler's 'short breaks' personal budget - basically instead of getting a council provided respite service, we have the money (amount based on an assessment of his needs) and purchase a service ourselves.  The theory is that the parents (and young person, as appropriate) can get something that is more suitable for them.  We wanted to get a PA (personal assistant) or support worker for Smiler, so he could go out and about after school one day a week and do something he wanted - go to Ikea for a free cuppa and try out all the sofas, go bowling, check out all the local Christmas lights - you know, ordinary things.  Okay, not what other 15 year olds do, but things that give him an opportunity to spend time with someone else, away from us to help develop his independence.

Anyway, back at the beginning (six years ago maybe?) we had someone who had just stopped working at his school to go to uni.  She was lovely.  They got on really well, she genuinely enjoyed being with him, and when she brought him back home he'd be buzzing with excitement,  telling us what they'd been up to.  Three years later after she'd finished her degree she had the cheek to get a job as a full time OT, and had to stop taking him out.  Despite trying everywhere we could think of, we weren't able to replace her.  Although the theory was that there would be plenty of willing applicants complete with relevant training and experience to fill the demand created by these personal budgets, it proved very difficult for many parents to find someone reliable who was prepared to work for the money we get from the council, and new legislation meant that as well as paying their wages and NI from the personal budget, we also had to provide them with pension contributions.  Although this was off putting we persevered, but Smiler's medical needs seemed too much for many.  The idea that at any moment he could have a seizure, or dislocate his jaw, or have a massive nosebleed - well, to be honest most of the applicants were looking for a young person with a relatively low level autistic spectrum disorder that they could take paces and do things with, not a wheelchair user with severe learning disabilities, never mind the personal care aspects or health conditions!

After about a year of trying unsuccessfully trying to recruit a PA we decided to change tactics a bit, and instead arranged for a local respite provider, running out of a centre nearby with sensory rooms, craft opportunities and outside space, to collect him from school once a week instead.  We paid for him to have a 1:1 worker, which to our mind meant that even though he wasn't out and about in the community doing things, he had a person who was focused solely on him who could encourage him to make a choice about what he wanted to do and support him to do it, to read books with him, to have a chat about what was going on in school or what he'd watched on TV yesterday.  Unfortunately this turned out not to be the case - they only usually used 1:1's for safety reasons, for young people who had tendencies to run away, or who might be aggressive to others.  This meant Smiler was seen as an easy option, and as they rotated 1:1's over time there was little consistency and no opportunity for Smiler to build up a rapport.  Over time we discovered that although we were paying for Smiler to be collected from school at 3:30 they were often late - regularly by about half an hour, and that as Smiler was so easy going everyone would have a 'turn' being his 1:1 while he was there, so each Friday he would have had maybe four different people with him for less than half hour at a time.  Fast forward two years and we now found out he often spent the time watching TV there, and they were dropping him home earlier and earlier - often just after 6 o'clock when we were paying £15 an hour (plus extras) until 6:30.

Meg, clearly impressed with my socks
It's very difficult to do anything once you're in this kind of situation though, as you - or at least I - worry about the fall out.  I wonder if I complain, will the workers treat Smiler differently because they're annoyed at his moany mum.  Will they be less accommodating when we cancel with only a days notice because Smiler is unwell?  Because Smiler's understanding of a situation is often superficial although he reads body language well, would he think he had done something wrong if people were short with him?

So we took the path of least resistance, and did nothing.  We smiled as they brought him to the door half an hour early; we nodded as school grumbled to us that they'd been very late collecting him again.  I felt trapped - we had tried so hard to recruit a PA and I really didn't want to start from scratch again - it had become very disheartening to find that the 'easier', more able kids could find someone to work with them fairly easily, but it seemed no one was prepared to take on my son.  So while we were dealing with getting the house sorted, Mr and I reasoned out loud to one another that at least it was better than nothing, and even if he was only watching TV, as far as he was concerned he was having a good time, and Noah and Petal were still getting a bit of time with us when we would not have to drop everything if he needed something.

But a couple of weeks ago, things came to a head.  They had been behind in invoicing us, so we chased it up, only to get three months of invoices in one go, each of which had an error.  Two had the milage of bringing him home to us as nine miles, instead of less than two - they were still calculating using the old address, where they have not taken Smiler in over a year.  Of course, this means we've probably been paying this incorrect amount since then, but I don't really want to dwelling on it!  The bigger issue was the invoice for the school holiday period, where we had been charged more per hour than usual, for no apparent reason, which lead to the bill being £150 more than we had anticipated (turns out they charge more per hour in the school holidays, but hadn't told us).  It was time to make a change.

So I rang an agency.  We'd pondered this option before, but had shied away because of concern about how ridiculously expensive it might be and also, I think, because it felt different.  Paying an organisation to arrange care felt very formal, and it felt like a bit of a slippery slope - a step towards Smiler being an adult that we have to arrange these things for.  Daft, of course, because he is now 15 and it's not all that long until he is an adult we have to do this for.

Anyway, I digress.  We contact a small local agency who I'd heard somewhere were meant to be good - it was originally set up by a couple whose children had severe disabilities and for whom they couldn't find appropriate, reliable care.  Met with the care manager, did the paperwork, talked things through, and on Friday Smiler was picked up from school by ... let's call her Jane.

And here is why we are now worried.
   ●    Jane went to the wrong school (well, right school, but wrong site).
  ●  Having gone to the wrong school, she was then late to the right school.
  ●  When asked who she was collecting, it transpired she only knew Smiler's first name - she clarified by saying "His mum is Lucas"
  ●  When asked to show her ID, she said she didn't have anything like that (school said you can't take him without it, and after a rummage in her bag she produced an agency ID)
  ●  Jane took Smiler to Ikea and got him hot chocolate and a cake (we had suggested Ikea's free cup of tea and some time sitting on all the sofas and looking at the Christmas decorations, and said No Cake because Smiler is getting a bit chunky - not said in front of him obv)
  ●  Jane brought Smiler back home at five o'clock, but wrote 5:30 on her time sheet.

I wrote this shortly before Christmas, and the situation has moved on again, but I figured I'd better post this so the next one will make sense!

Do you get a Personal Budget for your child or young person?  How do you manage it?  Have you had any difficulties recruiting?

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