Pages

Sunday, 25 September 2016

These days...

I know, it's not like me to keep my mouth shut for this long.

Unfortunately there is Stuff Going On with Smiler, and to be honest I don't have the brain space for writing - not about the Stuff, not even about not the Stuff.

A very quick catch up - Petal turned 12, Noah's new school shoes are a size ten and a half (going into year 9), the extension is finished (in that it has lights in the ceiling, paint on the walls etc, though no proper flooring yet, just concrete), the new puppy - my puppy - is perfect.

But the Stuff - well, it's big.  So send me your happy thoughts, people, your positive vibes, or clap if you believe in fairies - you know the drill.

And here's a photo of Riley, in case you haven't spotted her yet on my Twitter or Instagram.


○ ○ ○ ○ ○

Saturday, 18 June 2016

A fall and the aftermath

"Hi Lucas, it's David from school"

I didn't respond yet, waiting to hear the usual 'Smiler's fine" first, but it didn't come.

There was a certain tightness to David's voice, and although of course the head teacher of a special school is always under pressure, juggling budgets and staffing and LA and paperwork and building issues, he is usually able to keep a lid on it, and generally sounds pretty calm and laid back - but not today.  The distinct lack of immediate reassurance made me stiffen in my seat as all thone dreaded possibilities flashed through my mind - a seizure?  A bleed?  Something else altogether?

"Smiler's had a fall in the playground.  He has two first aiders with him, but it was eight minutes ago and we haven't been able to get him up yet..."

What do you mean, haven't been able to get him up?  Did he hit his head?

"No, no, not exactly.  He fell forwards - well, actually he was pushed by another student, which doesn't really help - but he'said very upset, and he doesn't seem to be able to use his arm...  Everything might all be fine, but I just wanted to let you know what was happening.  I'm going straight back out to him now, and I'll ring back on this number in five minutes."

Twenty five minutes later we met staff and Smiler at the local A+E.  They'd had to hoist him from the ground into his wheelchair as even his favourite adults had been unable to convince him to let them help him up, and he'd been crying in pain the whole time.  It wasn't difficult to see why.



(Excuse the dodgy mobile photos)

Smiler's left elbow has been dislocated and fused in place since birth, and so we've always been used to it not looking like an ordinary elbow, but his right - well, it's hypermobile, but generally elbow shaped.  

But not today.

An hour later an x-ray had confirmed his elbow was not only dislocated, but also fractured.  Unfortunately the A+E we were in couldn't sedate him to relocate it, so ordered a patient transport ambulance to take Smiler and I to the Children's Hospital which would pick us up within an hour.  By the time it actually arrived to collect us, three hours later, Smiler was exhausted by the pain.  Because of his haemophilia he can't have ibuprofen which would work on both the pain and the swelling, so he was only on paracetamol as he'd sneezed out the dose of dia-morph instantly it had been sprayed up his nose.


At the Children's Smiler was dosed up again but struggling still with the pain while the consultants debated whether to sedate him to relocate the joint or put him under a general anaesthetic instead.  By 11pm he had a slot in theater, and as per the usual protocols, an arrow was drawn on the arm that needed attention...


...but Smiler was not a fan.


First a failed attempt to site a canula, followed by a successful attempt to put him under with gas.  Anyone who has had to hold their panicking child - teenager - down, while they're screaming 'No! No mummy! No!' as loud as they can while an anesthesiologist does their bit will know how much that hurts.  Three of us holding him down against the gurney, another steadying his arm while yet another tries to get the canula in - it was horrendous.  

An hour or so later I was called to recovery, to find Smiler dozy but calm with his arm in a cast.  Lots of obs through the night as there was mention of 'limb endangerment' and 'potential nerve damage', partly because the joint had been out for so long before it was relocated.



Next morning the orthopedic surgeon who'd got it back in checked in with us, letting us know that although the joint was technically back in place it was very unstable, and most likely has always had similar construction to his left elbow.  So, although it wasn't quite dislocated like his left, it was very much on the verge of it all these years, probably partially dislocating every time he straightened it out but clicking itself straight back in again.  Turns out that the most surprising part of all this is that it took so long for it to happen.

So now we're home.  He has a follow up next week which will include more xrays, the cast will be on for three weeks followed by a splint which will restrict his movement so that hopefully it won't pop straight back out.  By then we'll have more of an idea what comes next, which the consultant has warned may well be more surgery to position pins and plates to keep everything where it's meant to be.  Anyone familiar with conversations with consultants will know how vague and non-committal they tend to be, which I find hugely frustrating - I'd rather know the possibilities so that I can do some research, get my head around it.  By my reasoning the fact the Big Bone Cheese said he thinks it's highly likely that this will not be the end of it means it's pretty much a certainty, but exactly how big a deal this is going to be, I don't know.

Keep your fingers crossed for us on Tuesday - instead of going out to lunch to celebrate our 14th wedding anniversary, Mr and I will be at an outpatients fracture clinic with Smiler hoping everything is still ... well, not where it's meant to be, as it's never been there, but where it's accustomed to being!


And in the meantime,  if you have any ideas on how to entertain a tired, grumpy and hurting fourteen year old who can't use his dominant hand or arm, let me know!

○ ○ ○ ○ ○




Friday, 17 June 2016

The day for Dad

Around about this time of year the shops are filled with cards and signs and gifts in anticipation of Father's Day - (Sunday 19th June this year btw in case you haven't been paying attention), and it got me wondering how this works in other families.

Since the kids were teeny they've proudly presented Mr with cards covered in painty handprints and lopsided glittery clay tealight holders (or versions of) each year - made at toddler group, or nursery, or brownies, or Mencap junior club, or school.  As the years went by the cards evolved from messy glittery lead by a grown up ones into construct (independantly) by numbers affairs, with pre cut shapes and 'here's one I made earlier' examples.  After that they became a little more personal, with carefully thought out messages inside and instead of being wobbly addressed Dear Daddy it became a more solemn To Dad, and now they're all in secondary school it's only Smiler who brings one home at all - Petal and Noah tend to hole up in the kitchen for an hour or so together, sat up to the table surrounded with different colour pens, them emerge grinning while trying desperately to look cool and casual with a card behind each of their backs.  Because of the different personality types Mr seems to get the same constellation each year - a painty handprint one from Smiler, an ernest message inside an 'I had a good idea but lost interest halfway through so only coloured in half the letters' type card from Noah, and a detailed desperately trying to please I love you so so so much one from Petal.

The accompanying gifts - well, the tangible teabag stapled inside a teapot shape card type naturally dropped off several years ago, and as a family we then gravitated towards 'I'll make you a cup of tea' or 'we'll do the washing up' or 'we'll make dinner' type rather than 'here's a huge teddy bear with a t-shirt that says I love my dad on'.

It's the same for Mother's Day to be fair, so I don't think it's just me being stingy and not wanting the kids to spend money on crap (although that definitely is a part of it), as Mr has led them to do similar - last year (back when we had an oven) Petal baked a batch of cupcakes completely by herself, and helped Smiler to help her ice them.  Those cupcakes, for all the messy icing and sticky cases and dry insides were absolutely perfect, and what felt like the best bit for me was the pride beaming from her face as she told me she'd looked up the recipe herself, and that the only thing Mr had done was get the mixer down from the shelf.  I know he felt the same when she made him biscuits last year, and when Smiler presented him with the bean he'd grown in a pot.

I get that others show their love by spending at the shops, but I'm glad that we have evolved our family traditions differently.  I'd rather all three of my kids use their own words to tell their dad how much he means to them, rather than relying on a printed rhyming message in a card picked up in a supermarket.  I'm glad that they want to fuss over him and sit with him and walk the dog with him instead of giving him a 'best dad' mug and then going off to do their own thing.  Of course it needn't be all or nothing, but I know too many mums and dads who get precious little meaningful interaction from their offspring to be blasé about mine still (usually!) wanting a kiss goodnight.

So, for Father's Day this year Mr will be getting a lie in - which I imagine will be greatly appreciated as he is at a friend's stag do all day on Saturday; breakfast made for him by the kids - most likely coffee and cereal or toast as we're still without an oven; and then his choice of activities for the day, which will probably consist of trying to find a film that everyone will watch and taking Eli for a nice long walk.  So long as there's plenty of hugs to go around, he'll be happy.

How about you?  Any plans for the day or memories of days long gone?

Thursday, 9 June 2016

A day in the life of a carer

It's Carers Week and when I spoke to John Darvall on BBC radio Bristol yesterday he asked what I actually do, in real practical terms.  I realised that so much of what I - and other carers - do is so automatic that you don't even realise you're doing it.  It needs to be done, so you do it.  To focus myself on what I actually do do, I'm noting down everything I do over the course of today. Plan is simple - only thing going on is a hospital appointment for Smiler at 12:20 - endocrinology.

○ ○ ○ ○ ○

6:20  Smiler awake, so I go in and help him untangle himself from his bed covers, get on his feet and put on his dressing gown.

6:30  Boiling the kettle for a cuppa for each of us.  Smiler wants to sit up to the table in the kitchen, so I help him sit in his chair, adjust the footplate and push him in.

6:45  Warming up Smiler's weetabix and help him eat breakfast, singing along to the radio to make him smile.

7:00  Draw up Smiler's two oral meds into syringes, wipe the spilt weetabix off the table, hand him the syringes one at a time to take the meds.  Mix another medication into his drink, remind him he has to drink it before he gets down.

7:15  Back into Smiler's bedroom, wash his face and brush his teeth in his bathroom, help him use the toilet.

7:25  Help Smiler get out of his pyjamas and into his school uniform, put on his splints and shoes so he can walk around the house more independently, and show Smiler again how to open his blinds.

8:15  Wash and cut up a pepper for Smiler to have as a snack in school, check he has a spare change of clothes in his school bag.

8:25  Get the wheelchair from the back of the van, put it up and help Smiler sit in comfortably.

8:30  Time to walk to school, waving at a lollipop lady on the way, making a mental note to check Smiler's room for his library books as we pass the library.

9:00  Handover Smiler to the class team, reminding them that he has a hospital appointment and we'll pick him up at about 11:45.  Explain that he will probably have bloods done but he hasn't asked me yet, so if he asks them they should tell him that they aren't sure, and he'll have to ask me when I get there.

9:35  Back at the house, strip Smiler's bed and put the washing machine on, then sit down for a cuppa and to check emails.

9:45  Ring GP to make an appointment for Smiler - as we're new to the surgery he has to be seen before they issue any of his repeats for his regular meds.  No appointments available (for the next two weeks), advised to ring back tomorrow at 8AM.  I explain it's routine, not urgent, but there are no appointments available to book for two weeks, which is as far ahead as they tell me they can book.

9:50  Spend 15 minutes on the phone to the council, going around in circles in their phone system.  Need the email address of someone in local taxation department to give to Smiler's (council employed) OT so she can email them explaining that we/the house meets the criteria for a band reduction for council tax.  Get nowhere.  Tweet @BristolCouncil to ask them for an email address.

10:10  Paint Smiler's bathroom ceiling.

10:35  Ceiling finished - woo hoo!  Time for another cup of tea and a bit of sock knitting.

11:20  Hang up the washing and put another load on.

11:20  Make a packed lunch for Smiler and gather some toys to use as distractions while we're waiting.

11:30  Into the van to collect Smiler from school.

11:40  Into school to pick up Smiler complete with wheelchair, drive into town.

12:05  Mr drops Smiler and I outside the children's hospital while he goes to find a parking space.

12:15  Smiler called to be weighed, so shoes off, splints off, out of the chair, then splints and shoes back on.  Squeeze down a hospital corridor with rows of chairs on both sides trying not to run over anyone's toes.

12:20  Smiler called to have his height measured, so shoes off, splints off, out of the chair, then splints and shoes back on again.

12:25  Set Smiler up with headphones on to watch Aladdin dvd while we wait to be called to see the consultant.  Mr arrives, having finally managed to park the car.

12:50  Get called for appointment - detangle Smiler from the headphones and dvd player, maneuver into the room and on with the appointment!

13:15  Appointment over (no bloods! Yay!) and I take Smiler to the BRI to get his newly prescribed meds from the pharmacy while Mr goes to get the car.

13:25  Trying to occupy a very stressed Smiler while waiting for meds to be dispensed - time for packed lunch!  Help Smiler eat his lunch, then decide he needs to switch off so headphones back on and Aladdin plays.

13:45  Pharmacist comes out, explains she can't dispense meds as Smiler is under 18 and she needs to talk to Smiler's consultant first.  Can't get hold of him, so will have to come back for meds tomorrow, or else pick them up from another Boots.  Arrange to collect tomorrow from a Boots out of town.

13:55  No point taking Smiler back to school so Mr drives us home instead.

14:20  Take Smiler to the bathroom, wash his face and hands and then settle him on the sofa to watch the end of his film.

14:30  Make Smiler's bed now his sheets are dry, and put another load of washing in the machine. 

14:40  Smiler's film is finished so we go into his room to find his library books.  Having only just moved house they could be anywhere, but Smiler finds one in a box of books as we unpack them and line them up on his shelf and I find the other.

14:55  Leave Smiler to chill out in his room looking at books while I try to get through to local taxation on the phone again - waste of time.

15:25  Herd Smiler into the kitchen for a quiet cuppa before his brother and sister get home from school.  He asks for his shoes off so I undo his shoes, unstrap his splints, and rub his feet for a minute - they need to stretch out after being held stiffly for so long.

15:50  Hang up washing and talk doors with the builder - need to fit a door to his bathroom with a handle he can use independently.

16:25  House is invaded by Smiler's sister and her friends - Smiler potters about while they sort out drinks and apples for a snack.

16:30  Smiler trips over in the hallway - takes both me and Mr to get him up and to the sofa.  Read to him to help him relax before we check him over to make sure he hasn't broken anything.

16:45  All seems fine, so Smiler listens to his radio in his room while I sort tea out for everyone.

17:05  Smiler brother returns from school and it's time for tea.  I sit and chat with everyone while Mr helps Smiler with his food.

17:40  With tea finished I take Smiler with me to walk the dog - get the wheelchair out of the van and push him over to the field where he walks a little then asks to get back in his chair.

18:15  Mr already find the washing up so we have a cup of tea and a chat while Smiler spends some time in his room.

18:55  Read Smiler one of his long term favourite books (Giraffes can't dance) then help him tidy his room.

19:15  Help Smiler draw his blinds before taking his clothes off to get in the shower.

19:35  Get Smiler's pyjamas on and his dressing gown, and into the kitchen for meds.

19:45  Draw up Smiler's epilepsy meds into a syringe, hand it to him to take.  Mix another medication into a drink, replace two slow release patches behind his ears, and check he can still use both arms/hands normally after falling earlier.

19:55  Smiler uses the bathroom, laughing as the wash/dry toilet does its thing - much preferable to me having to wipe and wash him!

20:00  I tag Mr in to do Smiler's teeth while I hand Petal's friend back to her mum.  

20:05  Chatting interrupted by Mr calling me into Smiler's bathroom.  His jaw has dislocated and I'm the only one trained to manually put it back in.  First attempt fails, second succeeds.

20:10  Smiler comes into the living room so we can keep an eye on his jaw - he wants to go to bed but we persuade him by offering an episode of the Lion Guard (kind of a sequel series to Lion King).

20:20  After his jaw has fallen out twice while he was laughing Mr and I realise this will be a long evening with Smiler.  I make some sandwiches as there's no point trying to have a 'proper' dinner in case we end up in A+E.  Smiler's sister goes to bed, his brother stays downstairs watching the programme!

20:55  Another dislocation which I have to put back in - the amount of pressure you have to use is scary.  Smiler vomits so Mr takes him to change his clothes and brush his teeth while I clean up in the living room.  Noah decides to go to bed - I remind him we might have to take Smiler in to the hodpital and not to worry if he hears us bustling about.

21:10  Smiler is back in the living room in fresh pyjamas, I put on another episode of Lion Guard and cross my fingers.

21:35  No further dislocations, so I take Smiler to the toilet and we tuck him into bed.

21:40  Cup of tea!  Fold the washing, and load the machine with Smiler's pyjamas and rinse.

22:00  Sneak a peek into Smiler's room - he's in bed snoozing with his mouth closed.

22:05  Put a load of washing on including the pyjamas and set the timer so it'll be finishing when I get up.

22:15  Watch TV for a bit with Mr - there are emails I should be writing but I'm knackered.

22:40  Smiler's still sleeping - mark the time on our white Smiler board, set my alarm for in an hour and Mr's for an hour after that, and go to bed.

23:40  Up and check the board - he was sleeping when Mr checked him an hour ago.  I peek in, and Smiler's mouth still closed - I set the alarm for in two hours, Mark it on the board and go back to bed.

1:40  Up and check the board (fine), check Smiler (fine), write on the board that I'm done, and back to sleep.

😴 😴 😴

Carried over for tomorrow: 
●  check Smiler can use both arms after falling today
●  ring GP surgery at 8AM to get a routine appointment for Smiler so they can issue his scripts
●  tell school about the fall, the jaw dislocations and the late night
● chase up the medication that the pharmacist couldn't give us with the local Boots, if no joy then the BRI pharmacy and the consultant
●  keep trying to put the council OT and the council local taxation in touch with each other
●  check out door handles in B&Q to see what would work for Smiler

○ ○ ○ ○ ○

Wednesday, 1 June 2016

Next week is Carers Week

Being a carer isn't always straightforward - even if you're clear about the extra things you do that constitute caring, sometimes people around you don't get it.  The first time I approached the reception desk at the gp surgery for example, and asked to be added to their Carers Register.  

'So, who do you care for then?'
My son, Smiler.
'Oh they don't mean that kind of carer, it's just for people who care for someone with a disability'
Smiler has a disability.
'But you're his mum, not his carer'
I'm a parent carer.
'What's wrong with him then?'
He has a unique chromosome disorder
'I'm not sure that counts...I'll just check with someone.'
...
'No, I'm sorry, it just means people who are proper carers, for adults.'

○ ○ ○ ○ ○

And a week later, having checked with the Carers Support Centre that the gp Carers Register is intended to include ALL carers, I gave it another go.
'But children need so much looking after anyway, I don't think it matters if he's disabled'
Well, he's entitled to DLA, which means he needs "substantially more care than another child of the same age without a disability"
'What was it you said was wrong with him?'
Severe learning difficulties, epilepsy, haemophilia, microcephely, specific language impairment, sensory integration disorder, scoliosis.  He's non verbal and doubly incontinent. He has nine consultants that's he sees at least twice a year (each), four different regular medications twice a day and another three that are PRN.  He can't weight bear so is hoisted in and out of his wheelchair from bed or a beanbag.
'Oh.  Okay.  I'll tick the "carer" box on your records then.

But why does it have to be do hard?  I don't want to have to list Smiler's health issues to a receptionist, and I don't see why I should have to.  If I was caring for my elderly dad, or my partner, would I be expected to explain 'what's wrong with him'?  I should point out that this conversation was years ago, but I regularly talk to other parent carers who face similar challenges.  While (and I quote the surgery receptionist here) "proper carers", as in carers of visibly disabled adults, seem to be acknowledged, there's still a long way to go for the rest of us. 

○ ○ ○ ○ ○

This is the first post in a short series that I'm writing for Carers Week, which begins on 6th June.  For more info see the Carers Week website, and for events and general goings on next week in Bristol and South Glos check out the Carers Support Centre news page.

○ ○ ○ ○ ○

Saturday, 21 May 2016

Stage One {adaptations}

We've split the adaptations up into stages, the first of which is creating Smiler's bedroom and bathroom out of what was the living room.  I'm counting days as working days though, so these 20 days were over the course of a month, if that makes sense (not helped by the builder going on holiday for week!).


○ ○ ○ ○ ○


○ ○ ○ ○ ○


○ ○ ○ ○ ○


○ ○ ○ ○ ○


○ ○ ○ ○ ○


○ ○ ○ ○ ○


○ ○ ○ ○ ○


○ ○ ○ ○ ○


Ta da - a bathroom!  Watch this space to see what it looks like inside...

○ ○ ○ ○ ○

Monday, 2 May 2016

Smiler and the lack of hormones


I grumble about my kids and their hormone invasions, as I guess most parents do.  Noah has needed a new pair of school shoes every term this school year, and I don't mean old terms, when there were three in a year - I mean new terms, six week terms, and he's now - having just turned thirteen - in a size ten.  Petal is almost twelve, and some days she cries if you look at her wrong - sensitive is an understatement!  Smiler, although he's the oldest of the bunch, is still a hormone free zone, which brings with it its own challenges, and we're getting towards decision time.

○ ○ ○ ○ ○

Mr and I have weighed up the pros and cons for Smiler, and the pros list is pretty strong.  Timing is another issue that we're dancing with - Smiler's birthday is September, which means he's now 14 years 7 months old.  The average age for the very beginning of puberty - the start of the internal changes that aren't outwardly noticeable - is 9 years 6 months, which puts Smiler a little over five years behind.  It's difficult to try and put that to one side and concentrate on whether or not we should be treating when you feel like there's a clock in the back of your brain, ticking louder and louder.

○ ○ ○ ○ ○

During adolescence the bones become much denser, packing on strength so that the gradual decline that begins in adulthood doesn't develop into osteoporosis for many many years.  Of course, if that early increase in density doesn't occur, the slide into osteoporosis is hugely accelerated.  Smiler has issues with his skeletal system anyway - a permenantly dislocated and fused elbow joint, (surgically corrected) bilateral dislocated hips, relatively mild scoliosis, and his jaw regularly dislocates on both sides at once, locking open when he yawns.  With all this going on already, we know that the weakening of his bones combined with his atrocious balance is likely to result in many many broken bones in the years to come, each bringing with them pain and confusion,  probable general anaesthetics for them to be assessed and plastered, and then the impact on his life while he's in cast, time off of his feet if it's a leg or ankle, physio for however long it takes for him to build his strength back and return to normal.  It's a lot - and by dosing him now we can minimise his risk.

○ ○ ○ ○ ○

It might sound harsh to someone who isn't experienced with people with intellectual disabilities the level of Smiler's, but his future fertility and sexual function are not factors that we're taking into consideration.  Statistically he's very unlikely to be fertile anyway - individuals with genetic conditions like his usually aren't.  The issue of his function - well, on a purely physical level, his coordination is so poor he can't get his foot into his shoe without help, but it's the capacity to consent side that rules it out as far as we're concerned.  While his exact level of understanding is difficult to ascertain, his official diagnosis is of a severe learning disability - that puts his IQ between 20 and 35.  If he can't understand, he can't consent, so any such relationship would by definition be abusive.

○ ○ ○ ○ ○

As well as physical changes, during adolescence hormones trigger psychological and emotional changes.  Some of these are obvious - the stroppiness for example - but there are other things going on too, such as greater development of impulse control.  Right now, with no hormone surges, Smiler isn't experiencing these effects, so intellectual disability aside, his understanding and behaviour are still immature.  He gets very excited very easily, and finds it difficult to calm down.  In a lot of ways, he's like a ridiculously overgrown toddler - he falls over (often), laughs hysterically for ages when something tickles his funny bone, needs lots of reassurance when he's anxious.  Without providing the hormones artifically that his pituitary gland would ideally be producing itself, these changes just won't happen, which means that he'll remain - emotionally - a child.

○ ○ ○ ○ ○

Having gone through the process of wondering if there's a problem, starting investigations, having the suspicions confirmed (isolated gonadotrophin deficiency to be exact), deciding whether to treat or not, we're now at the point of wanting to know more about the treatment options.  The front runners seem to be daily applications of testosterone gel or (painful) intramuscular injections every three to four weeks - neither of which is exactly appealing.  Not as bad as daily growth hormone injections though, which was a real possibility at one point, so I suppose we need to look on the bright side.  As to which route we end up going down - watch this space!

○ ○ ○ ○ ○

Thursday, 14 April 2016

Things I Did Not Know


I wanted to share a few handy nuggets of information that I have found useful while I've been sourcing the (mostly) specialist equipment for Smiler's bathroom.  They come under that category of Things I Did Not know (But Wish Someone Had Told Me) - you know how you often find things out just that little bit too late to take advantage of?

○ ○ ○ ○ ○

The most obvious of these is to do with VAT exemptions.  Rather than trying to explain the rules myself, I just want to point you in the direction of a couple of links that I found really helpful in getting my head around it.  I'd recommend the Independent Living website as a good place to start to do some research about equipment and to have a browse around anyway (and sign up to their weekly newsletter while you're there), but especially the VAT exemptions page for an explanation of what conditions need to be met in order for a purchase to be exempt from VAT, and the helpful advice it gives about how you actually benefit from that exemption!  They have a blank exemption form that you can download and fill in, which is handy if a business you're using isn't familiar (or even aware) of the system and does the equivalent of getting scared and going silent and looking at you like a rabbit in your headlights when you mention it.  There's also the official government page on VAT relief for disabled people which gives the legal basis for the exemption, but to be honest I found the Independent Living explanation more useful and applicable to real life.

Have you read the Independent Living info yet?  If not, go and read it quickly so the next bit makes sense - it won't take you long, and it opens in a new window so you can close it when you've finished reading and come right back here.

Okay.  You'll now know that as well as the end user being eligible for the exemption, the equipment itself has to be eligible.  You'd think this would be easy to find out, but I struggled.  I was emailing manufacturers who'd designed the blasted stuff and couldn't tell me if it would be eligible,  because they 'don't get involved in that side of things'.  A shortcut I found was to see if the item was stocked here, because at the very beginning of their product description it's made very clear whether an item is exemptible (is that a real word?) or not.  I'm not actually buying anything from here however - long story and I think I'll take the high road and simply say that the prices they offer are not the most competitive, and nor is their customer service.

○ ○ ○ ○ ○


○ ○ ○ ○ ○

Researching the equipment that you're looking to buy is essential - some of it can be bloody expensive and although it may not be possible to be certain that it will meet your needs, there are some simple checks you can use to get a fairly good idea.
●  I would highly recommend talking to an OT if you have access to one, and if you're looking at major home adaptations you should be able to get an assessment.  If they mention a piece of equipment and you have no idea what that is, tell them!  Some can assume that you'll know about things that you don't, or use a specific brand name when actually they mean any one that is like that might work for you.  If they're talking about a specific item, ask if they can write down the name of it for you, or email you a link to somewhere you can buy it from.  Even if you don't get it from there, at least you'll know what they were going on about!
●  Try gathering other users/carers opinions on equipment - use social media or any forums or groups that you're part of to say "Hey, I've been thinking of getting grab rails / specialist cutlery / a wash&dry toilet - does anyone have any recommendations or horror stories to share?"  If it's a piece of kit for someone other than yourself, have a think about whether there is anyone else whose brains you can pick about what works - does your child attend school for example, could you ask their teacher what cutlery/crockery they use to eat lunch when they're  at school, or what kind of grab rails they have in the bathrooms there and how your child gets on with them.  If your dad regularly goes to a specialist setting overnight, can someone there who is familiar with him spare ten minutes to show you the type of bed he uses, and whether it has any particular functions or elements that suit him, such as adjustable positioning or a guard rail.
●  Use websites of organisations such as the DLF (Disabled Living Foundation) who have loads (and loads) of general information factsheets about features to think about when looking at equipment (all of which are free to download), as well as Living Made Easy, who have gathered together info on specific types of equipment to help you work out what you need, and what is actually available out there.
●  See if there's any way you can actually try out the equipment (or at least see it and touch it) before you part with your cash - maybe through the DLF's short term equipment loan library, or at a local equipment demonstration centre.  It might be worth asking your OT if their department has any of what you're pondering that you could borrow for a week or two, or at least for you to take a look at.  For bigger purchases I'd recommend getting in touch with a company rep and see if they can come to you - we had visits from reps from two different companies when we were choosing a wash and dry toilet - but obviously keep in mind they have a vested interest in wanting you to choose their product!

○ ○ ○ ○ ○

When you've decided exactly what you want, run through your usual buying things routine - mine is to google the item (including a model number as well as manufacturer if possible) and see where I can get it from.  Keep in mind possible VAT exemptions and delivery charges, and I always try and check out a website's reputation if I haven't heard of it before - look for independent reviews, read a forum thread or two - if there are pages of comments about items either not turning up, or else turning up but being generic copies instead of the 'real' branded version that was paid for - well, I personally wouldn't risk it.  

Do check out ordinary mainstream shops as well as specialist suppliers, as sometimes they can surprise you - places like Argos and Boots for example are worth a look.  

I've found that prices can sometimes be negotiated a little - if you're spending a lot with one company and they also sell the tap / plate / other relatively smell item that you want, but are charging more than you've seen it for elsewhere, it might be worth asking if they could possibly match that lower price - it's more business for them, as well as less hassle for you, and you might save yourself a separate delivery charge - obviously be polite and be prepared for them to say 'sorry but no'.  In my experience as long as you're being reasonable then you're in with a chance, and hey, if they say no - it's not like you've lost anything! 


○ ○ ○ ○ ○

Okay, that's it - hopefully some of that will be helpful to someone at some point - maybe I'll be the someone that clues someone else into something that they didn't already know.  It's also made me realise how much I've achieved by actually doing the research and sourcing all the equipment for Smiler's adaptations - no wonder I'm shattered!

○ ○ ○ ○ ○

Wednesday, 13 April 2016

Shower or bath? {adaptations}


Although choosing the toilet was a biggie, we knew that very early on in planning the adaptations we needed to decide between a shower and a bath for Smiler's bathroom.  He loves baths, and right now in the bungalow we have an ordinary bath with a shower over it, so at first glance the decision should be easy.  However, nothing is ever that simple of course!

Bath vs shower - things to consider

Having a long soak in the bath is an enjoyable activity for Smiler, as well as providing lots of opportunities for sensory activities, fine motor skills and so on but a bath would take up a significant amount of the floor space we plan to turn into his bathroom.  When in the bath Smiler has to have someone (literally) right next to him the whole time as he will happily slip under the water then be unable to get back up (in addition to risk of seizures) - being supervised every second impacts on his privacy / dignity.  Getting in the bath is challenging for Smiler, and gets more so every year - I cannot physically support him by myself, it takes both Mr and I to get him in and out.  His size and weight mean that he probably ought to be hoisted, which he hates with a vengeance.  I worry sometimes that if he did have a seizure in the bath I wouldn't be able to get him out on my own.  A shower offers more opportunity for Smiler to develop his independence - he can physically access it without support from anyone else, and we don't need to be 'eyes on' the entire time he's in there.

[I feel like I need to explain that this doesn't mean Smiler will be unsupervised, just that we can chat to him from around the corner perhaps instead of having to be right beside him watching him every second - I don't mean he's going to be left to get on with it by himself - unless of course he reaches a stage where that is safe for him]

○ ○ ○ ○ ○ ○ ○

Having gone back and forth a bit, we decided that a shower would be the best option.  There is a bath upstairs that Smiler can use as a treat on occasion, and for us the independence angle is a biggie - we want him to have as many opportunities as possible to practice his self care skills.  So, a shower - but which one?  This turned out to be one of the more straightforward decisions, thankfully, partly because there aren't actually choices on the market that would work for Smiler.  We started the research by visiting the Home Independence Centre in Bristol, run by Care and Repair.  They have stacks of pieces of equipment there that you can take a look at and ask questions about - bathroom displays, kitchen stuff, all sorts.

They had a few different shower units, but it was very clear very quickly that most of them would be simply too complex for Smiler to operate independently, aimed much more at older people who struggle physically with the controls rather than individuals with intellectual disabilities.  The exceptions were the Redring Selectronic range, and the AKW Luda range, both of which feature simple (well, simpler) controls as well as other elements from our 'must have' tick list such as thermostatic control (so even if other taps or whatever are turned on elsewhere in the house the temperature remains constant) and an extended riser rail (so there is enough adjustment possible for Smiler to use it if sat on a shower seat or stood up).

○ ○ ○ ○ ○ ○ ○


I chatted to a few people who have the Luda and though (when it's working) it seems to function well, with three set temperature programmes and large push button controls, they reported that it seemed to have a fairly short life cycle - one had only lasted for just over two years, which doesn't seem long enough for a shower unit that cost over £300.  I also heard about a number of faults that families had experienced and, although of course this is all anecdotal, I couldn't help feeling wary of something that several people warned me away from.

○ ○ ○ ○ ○ ○ ○


I tried to keep an open mind while I looked into the other contender, the Scelectronic range, but pretty much liked it more the the more I found out about it.  The controls are *fingers crossed* Smiler-able, with a large start/stop button, and then two more push buttons marked 'warmer' and 'cooler' - writing colour coded red/blue, and textured + and - symbols on the buttons.  On installation you choose a temperature range that these controls won't then take it out of, and there is a large LCD display which shows the temperature.  The shower has numerous spray patterns can be selected by twisting the handset, a two metre hose, and one metre riser rail.  It also has a separate on/off button - kind of like a remote control.  Not sure how much we'll use it to be honest, but I can imagine it will be handy to be able to turn the shower off from outside if Smiler has had a fall or a fit in there, so we don't get drenched getting him out, as well as those times he doesn't want to get out because he's too busy enjoying the warm water...

○ ○ ○ ○ ○ ○ ○

The electrician told me I needed to find the 9.5kw version, so I got the model number off of their website and searched for that - otherwise it can be easy to get excited at finding a great price only to find that it isn't exactly the version you were after.  So I've heard.  Ahem.  Anyway, the price varied quite a bit, from £269 to £457, so it definitely pays to shop around.  I ordered from showerstoyou, as the £269 was the most appealing to me (surprise surprise) and it was delivered two days later - no faff, no fuss.

As for how it looks when it's up, and how it works out for Smiler - I'll let you know.

○ ○ ○ ○ ○ ○ ○

Saturday, 9 April 2016

Wash and dry toilet {adaptations}


Smiler has, fairly recently, begun using the toilet.  To most people this is no big deal, but if you have or know a child who has been in pads so far past the usual point at which this progression is made, you will get what a massive step this is.  It is not something that anyone working with him really thought was going to happen, though some people who are less aware of this side of life made helpful suggestions such as 'well why don't you just put him in pants and see what happens?'  Answer is, I know what would happen.  Exactly the same thing as if you put a six month old baby in pants to see what happens.  You end up with someone sitting or laying in a puddle, soaked to the skin, not understanding what is going on.

End of rant.  Sorry.

Anyway, Smiler now wears pants and uses the toilet during the day.  His balance and coordination mean he doesn't do the usual man-ish thing of standing and aiming, so he sits instead.  As amazing a progression as this is, we are also aware that the time it will take for him to get the knack of all the other related skills mean he won't be truly independent in his toileting for years, if ever.  Reminding him to go, suggesting that he 'try' before we go out, assisting with his button and fly, helping him pull down his trousers and pants, lowering safely to the toilet seat, wiping him when he's done, pulling up his pants and trousers, doing up his zip and button, putting soap on his hands, turning on the tap, rinsing his hands, turning the tap off, getting a towel for him to dry his hands with - there are still a lot of aspects of toileting where he needs our help.  By looking ahead and chosing what is going in to his bathroom to enable him to develop these skills or other ways around the barriers to his independence we can increase his dignity and make things easier for us too.

The priorities here include Smiler's dignity, his cleanliness, but also the difference this makes for us as his carers.  The most obvious example is wiping Smiler after he has used the toilet - remember when your toddler or young child would shout for your help with this?  Remember how they gradually got the hang of it themselves, and how you suddenly thought back one day and realised that they hadn't called for you in ages, and they actually didn't need you to help them anymore?  Well, how old were they?  Smiler is fourteen, and even if he doesn't understand the social conventions that make this uncomfortable for the rest of us, it's no one's favourite bit of providing for his care needs.


So, it turns out that there are such things as 'wash and dry toilets' which - as the name suggests - wash and dry the area in question.  Bit weird, yes, but only because it's so unfamiliar to us - apparently they're hugely popular in Japan, where the density of inhabitants mean the sewage system struggles to cope, but these toilets, which wash you with a gentle stream of water and then effectively blow dry your bum, negate the need for toilet paper which in turn reduces the risk of drains blocking.  Although many European countries are big on bidets (which do a basic version of the washing function) they aren't common in the UK, which means they are still aimed primarily at the 'special needs' market (though one of the manufacturers below are clearly trying to alter that perception).

○ ○ ○ ○ ○ ○ ○

There are two manufacturers, Closomat and Geberit, which make these toilets.  Closomat are the old hands, while Gerberit are comparatively the new kids on the block.  Having talked to the OT (who told us each brand had it's own strengths) we decided to get in touch with both companies, make arrangements for the reps to visit, and do a little research on our own in the meantime.

Closomat offer a single model in a choice of either floorstanding or wall hung.  The floorstanding incarnation - the palma vita - can be customised with various options, such as support arms, plinths (to raise the overall height of the toilet) and a padded seat along with a few choices of how to trigger the wash and dry function.  The default trigger is elbow press pads, so you kind of move your elbow backwards when you're finished to start the cycle, but these can be deactivated and replaced with a push button remote or proxy switch (triggered by movement near the sensor).


○ ○ ○ ○ ○ ○ ○

Geberit have the Aquaclean, which has a range of models, enabling you to retrofit an existing toilet or start from scratch.  The model we were interested in was the Aquaclean 8000 plus, which is the poshest one they do - but of course!  It works on the same basic premises as the Closomat - an arm (for want of a better word) extends from the edge of the toilet bowl, sprays you with water and then retracts, and then "a warm puff of air gently dries you off".  You start and adjust the cycle by using the buttons on the side of the bowl, a proxy switch, or remote control.


○ ○ ○ ○ ○ ○ ○

We were visited by a rep from each company, and while Closomat came with a scale model while Geberit brought a life size version.  It's a bit odd - I suppose because toilets and associated bodily functions are so taboo in society it's not something that comes up in conversation often, so having someone visit your house for the purpose of discussing toilets, and bringing a toilet with them - well, I'm sure it gave the neighbours something to wonder about, put it that way.

○ ○ ○ ○ ○ ○ ○

It was the adaptability of the Gerberit that swung it for us in the end, along with the associated cost considerations.  With the Geberit you can adjust the length that the arm comes out, as well as the water pressure and temperature, using the remote, then set a user profile so the adjustments are saved.  With the Closomat, these have to be set at installation and can only then be changed by an engineer, which means you have to fork out for a service call every time they need adjusting because Smiler's needs have changed.  After all, he will grow, which may well change where the best position of that arm will be.  We're also conscious that this is going to be something new for him, so want to start off with a very low pressure wash, and then gradually increase it over the first few weeks so that it reaches a level where it is effective, but not uncomfortable for him, and that acclimatisation may take a while.  The alternative, having to set the pressure at the start and then that's it, might mean he sits on it once, freaks out, and then refuses to sit on it again.  


The triggering mechanism was another consideration.  The elbow pads on the Closomat wouldn't work for Smiler as he would likely trigger them unintentionally, and can you imagine?  Being halfway through ... what you're doing, then suddenly your nether regions are being washed? 😮  Although the Closomat did have other triggers, all of these were extra options which incurred an extra cost, while the Geberit had the proxy switch and remote control included.

○ ○ ○ ○ ○ ○ ○

The Geberit is available through a few different suppliers, and are meant to be pretty easy to install, but we're getting a (relatively) local company to come and install it - thinking being that they've done loads before, so the install is likely to go off more smoothly.  The cheapest I found the toilet itself for was £2584 from here (price not including vat, as it's vat exempt if you meet the conditions - a post about this coming soon!), and the quote we got for supply and installation (again, not including vat) was £3250.  I feel a bit sheepish about the cost - I've had a few raised eyebrows when people have heard how much it is, and assumed that we must be loaded to be paying over three grand for a toilet, but I'm kind of assuming that if you've read this far you probably get that it's not that straightforward.  As to how the installation goes, and how Smiler gets on with it, I'll keep you posted!

○ ○ ○ ○ ○ ○ ○

(Off on a tangent)

See, this is why writing this was a good idea.  In browsing the Geberit website looking for quotes and photos, I found that the model we want, the floorstanding version, is no longer on there.  I've tried to ring the company that quoted us to install it, but they're closed.  And while the quote they provided  (back in August) doesn't specify it is for the floorstanding model, not the wall hung model, I asked them for the spec our builders need in order to get everything ready for them to come and do the installation, and the spec they sent - last week - does say this.  Might not sound like much of an issue, but since the builders spent last week digging holes and fitting a new soil pipe which, if we have to go with the wall hung model, will be in completely the wrong place, trust me when I say it's a problem!  Geberit got back to me on Twitter (love Twitter) that the floorstanding model is still available, so panic now over.

○ ○ ○ ○ ○ ○ ○

Saturday, 2 April 2016

decisions, decisions, decisions. {adaptations}


Having worked out (finally) the funding for the adaptations to our new house to make it Smiler-friendly, I've had a couple of people ask me about the equipment that's going in.  Mostly bathroom stuff, but a few other bits and pieces too, so I'm planning (famous last words) to share some of the reasons why we went with what we've gone with.  A quick guide to some of the research, pondering and comparisons that have gone into getting this far, in other words.  I know you know this, but I'm going to say it anyway - our choices are based on Smiler's needs, and what fits best with our ordinary everyday family life.  I'd like to think someone reading this might find it useful to hear our thought process and comparisons, and if you have any specific questions you think I might be able to help you out with, do drop me an email and I'll do my best to answer.

(Photos are nothing to do with the subject matter, obviously, but I took them and I like them and I can put them here if I want, so there.)

○ ○ ○ ○ ○ ○ ○


So, what will I be covering?  I've written already about The Problem of The Stairs, but will properly explain why we have made certain choices about other elements of that system.  I'll be talking toilets (as you do), comparing the two models that are available that do what we want it to do, and what the deciding factors were for us in choosing one over the other.  I'll run through the different showers that we looked at, and the features that are available which impacted our decision.  Also shower seats that we came across, some basics about the different types that are around and what we took into account when we were narrowing down what we think will work best for Smiler.  Grab rails is another big one for us - there is such a massive range out there it can be difficult to know where to start!  I'll share some of our thinking about what we have gone for in the end, along with a personal evaluation of some of the features available.  I had assumed that choosing a shower screens would be completely straightforward, which turns out not to be the case, so I'll share a bit of my research and googling on those with you too.  Writing about sinks and taps might be challenging, since we haven't resolved that one yet, but I'll put it last on the list and will hopefully have made a decision by the time I get to it.

○ ○ ○ ○ ○ ○ ○


Just to be clear from the beginning, I don't have any particular fondness or affiliation for any brand or manufacturer or supplier, and none of these posts are sponsored or anything like that.  All of those of us who has ever had need to browse sensory toy catalogues or look for a car seat that can provide torso support or find swimsuits that will work for our incontinent child will know that as soon as anything is "special needs" or "disability friendly" will know that the prices seem to mysteriously (at least) triple, and sourcing more economical suppliers can be a complete bugger, so I will be sharing links to supplier websites and stating prices to give you a bit of an idea of what to expect.  I'll also be sharing my personal experiences with the process of researching and ordering, and some things that I Did Not Know (but wish someone had told me) before I started this!

○ ○ ○ ○ ○ ○ ○

Sunday, 27 March 2016

Smiler's latest health kerfuffle


I've umm-ed and ahh-ed a bit about sharing this, but after a recent conversation with another special needs mum have decided to go ahead.  It's that old chestnut about balancing the privacy of your children when you blog, with the reality of life.  I know that I, as a parent, have learned all kinds of useful info from reading about decisions and difficulties that other parents have faced, and I'm the sharing kind I guess.  If you don't want to know, don't read on!  Subjects that will be covered include puberty and fertility in a young person with special needs, and medication related to these.

○ ○ ○ ○ ○ ○ ○

I wrote back in November about the lack of physical changes evident in Smiler, and seeking medical advice about whether this was evidence of a problem on the horizon, or whether I was being an over-educated, looking-for-trouble type mum.  Although initially I'd asked the GP to refer Smiler to an endocrinologist, we ended up seeing a general paediatrician, who then had to refer us on to an endocrinologist.  In the NHS access to a specialist is tightly controlled, and while I understand the reasons this has to be the case, I'm frustrated when it means we used up the time of a general paediatrician whose only action really was to make the referral I had actually requested in the first place.  Surely listening to the (well researched and not overly cautious) parent who has years of experience of working with specialists would have been the sensible way to go?

Anyway, we went into the appointment with the endocrinologist aware that Smiler's blood tests had revealed his levels of testosterone and LH (luteinizing hormone, another one related to adolescence) were so low that they were technically classed as 'undetectable'.  Reassuringly - kind of - this matched with the lack of development of sexual characteristics we had reported - no body hair, no genital changes, no growth spurt.  These, in turn, tallied with Smiler's 'bone age' which, from measurements from a hand x-ray plugged into a complex algorithm told us his bones are eleven years old, which explains why he was such a floppy baby!  Though his dental age (oh yes, we all have a dental age too - who knew!) is 19, so doesn't fit with either his bone age of eleven or chronically age of fourteen, we're ignoring that right now.  For more info on signs of puberty, check out the NHS Choices / Live Well website.  At the hospital, after a complicated calculation for which they needed my exact height (apparently 'short' isn't marked on the chart) and Mr's (neither is 'tall'), it was determined that Smiler has not reached the height you would typically expect by his age (chronological), so things were not quite right.  While there can be a number of reasons for this, including Smiler simply being on the very late end of average, the endocrinologist, when asked for his best guess, taking into account the factors specific to Smiler, told us he doesn't think this is going to happen for Smiler naturally.

○ ○ ○ ○ ○ ○ ○

To be honest, I find myself in two minds about this.  First, I wish Smiler (and the rest of us) didn't have to deal with this.  I wish Smiler's pituitary gland was working the way it's designed to.  However, bearing in mind that it isn't, I'd rather know, and feel that it is being dealt with, or at least that we are getting the necessary information to make an informed decision about dealing with it.  With the health issues that Smiler has faced over the years there is definitely a bit of my head that sometimes wonders if I'm imagining problems, but having medical tests that back up my thinking validates my instincts, which of course is completely my issue and nothing to do with Smiler.  Sorry kid.

○ ○ ○ ○ ○ ○ ○

Our first question on being given the explanation for this convergence of results - that Smiler has a gonadotropin deficiency - was an easy one to ask, but tends to get a bit of an eye roll from medical professionals.  "If we opt not to treat this, what would that mean for Smiler?"


I should point out that our inclination is to leave things alone, unless we feel the outcome justifies the risk.  His hip surgery for example - if he had not had this major orthopaedic surgery, his joints would have deteriorated and he would have been in constant pain as well as being unable to walk, weight bear or even sit.  Our thinking includes the knowledge that so many medications come with bucket loads of potential side effects which might impact on something else, and with Smiler's level of communication and understanding we might be unaware of what is going on for him - headaches, dizziness, fatigue, double vision, nausea - all common side effects of lots of medications, and all things that could impact significantly on his quality of life.

○ ○ ○ ○ ○ ○ ○

On top of these medication issues, we have another issue in mind.  Puberty equals growth spurt which equals pressure on Smiler's joints.  Sexual frustration, mood swings, hormone surges, wet dreams, acne, body odour - and for what?  What lies on the other side of the scales here, for Smiler?  There are news stories out there about parents seeking medical treatments to prevent their disabled daughters from menstruating or becoming pregnant, like this one in the UK.  Australian authorities have looked into the issue of forced sterilisation, and this well known US case involved a young disabled child undergoing significant medical intervention to avoid issues directly related to menstruation and puberty.  But what about boys, who - stating the obvious here I know - cannot become pregnant?  The ethics related to growth attenuation therapy - dosing children with hormones to inhibit their growth - is examined here, by the New York Times.  This treatment has been doled out to boys, but the situation with regards to Smiler is slightly different - both practically and ethically.  Our decision lies not in whether to medicate to prevent puberty, but instead whether to medicate to cause puberty in the knowledge that without our intervention it will most likely not happen.

Myriad issues to try and consider here, ranging from 'should our severely disabled son undergo medical treatment in order to potentially become fertile' to 'how much pain and/or discomfort will such treatment cause him', along with 'if he could make this choice, what do we think he would choose'; 'his becoming physically bigger and more mature will make some aspects of his care more difficult'; 'growth spurts could potentially destabilise his curved spine, necessitating surgery, body braces, and bring him lifelong pain' - it's  a lot to try and balance.

○ ○ ○ ○ ○ ○ ○

What do you think?  Are you passionately for intervention, or do you think it's unnecessary?  Do you think we're selfish for considering not going ahead with treatment, or does the hands off, let nature take its course argument swing it for you?

○ ○ ○ ○ ○ ○ ○

Monday, 14 March 2016

The Problem of The Stairs, and (fingers crossed) the solution.

So, after getting the DFG approval last week I decided I had to get on with the getting on, and make a start.

The builder, however, disagrees.

Well, not exactly disagrees, just isn't able to start right away.

Apparently, four hours notice is not sufficient.

○ ○ ○ ○ ○ ○ ○

I'm fighting urges to choose his bedroom furniture and take up Smiler's curtains and start painting, but we are nowhere near that stage yet (as Mr keeps reminding me), and as patience is not my strong suit I began looking through the schedule to see if there was anything I could be getting on with.

○ ○ ○ ○ ○ ○ ○

What I came up with was, disappointingly, not an awful lot.  But, you have to start somewhere, every journey begins with a single step, and all that jazz.

Our first step was placing an order which will - hopefully - sort The Problem of The Stairs.

○ ○ ○ ○ ○ ○ ○

The Problem of The Stairs

When we moved into the bungalow Smiler was two, Noah was one and I was (very) pregnant with Petal, so none of them have ever known stairs.  In fact, I remember taking Noah and Petal to places where there were steps so they would get the hang of them, after Noah started nursery and I watched him struggling to climb the few steps to get in.  It sounds daft, but they had just never encountered them, thanks to always having Smiler along with his wheelchair which meant (as usually it was just me with the three of them when Mr was working) that we had to take the lift in shopping centres and if there wasn't a lift - well, we just didn't go there.  

Though they have developed in confidence since then (obviously), stairs are still something of a novelty - here's Petal the day we bought the house, very very wary of the plastic the previous owners had put down... 


The original idea to solve The Problem of The Stairs, courtesy of the OT, was to put a bloody great safety gate at the bottom, but Mr and I nixed that idea pretty sharpish.  We want Smiler to learn not to try and climb the stairs without supervision and support, but to physically block them impacts everyone - me running up and down with washing, Noah flying his radio controlled helicopter around, Petal encouraging Eli up the stairs to brush his teeth.  I hate distributing everyone's clean washing at the best of times (housekeeper of the year I am decidedly not), but the idea of trying to juggle a couple of armfuls of laundry while undoing a fiddly baby gate (that probably takes at least two hands to open at the best of times) and then trying to get through it (without tripping over) and then closing it behind me - well, I was looking for an alternative, put it that way.

I was told about 'break beam' alarms that are sometimes used as a safety aid with individuals with dementia.  An alert that is triggered when - for example - an individual leaves a safe area of the house.  A bit more general googling and another chat with the OT, and I had a few suppliers to check out, the stand out front runner of which was EasyLink UK.

EasyLink are able to put together customised sets of call buttons, break beam alarms, movement sensors and all manner of other cleverness, and were hugely knowledgeable when I spoke to them on the phone several months back.  They recommended movement sensors rather than break beam alarms, and also provided advice about help buttons, which was something else we'd considered but didn't know where to begin looking.  I got back in touch last week and placed the order for Smiler's set-up, which all link to a pager - when it goes off, a message comes up telling us the trigger, so we know whether he's left his bedroom, or gone into his bathroom, or pressed his bedroom or bathroom alarm button.  This lets us know whether we have time to pull on a dressing gown and feel around for slippers, or whether we both need to tear downstairs sans modesty because he needs us right this second.

Well, that's the plan at least.  When it all arrives in a few weeks and we get to try and set it up I'll let you know how it goes!

● ● ● ● ● ● ●