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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?

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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.

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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!

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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! 


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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!

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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]

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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).

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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.

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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...

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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.

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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).

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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).


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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.


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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.

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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.

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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!

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(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.

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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.)

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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.

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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!

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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.

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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.

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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.

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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.

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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.

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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?

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