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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