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Friday, 31 July 2015

When a new toy isn't just a new toy

Smiler had a tough week - you know those times everything seems to go a bit sideways and your well thought out back up plans are frustrated too?  That.  Anyway, because he really needed the distraction I suggested to him that we choose a new toy for the school holidays, something that we could keep at the new house and he could play with when he was there.

You see, a new toy to Smiler isn't just a new toy.  It's the looking, the thinking, the finding; the comparing, the concentrating, the choosing; the waiting, the planning, the anticipating.  From my perspective, his excitement at deciding which toy he wants was an activity in itself - he's occupied, he's engaged, he's focused.  Once the order was put in, he told his brother and his sister and his dad about the toy he'd chosen, which required a complex level of communication as they started off with no idea what he was talking about.  Smiler thought about what he was going to do with it when it arrived, and even picked out where (in his new bedroom) it was going to go. Course, it's not difficult when your bedroom currently has nothing - and I mean nothing - in!  The lovely wide windowsill in his gorgeous bay window is the perfect place,  according to Smiler.  So, he has thought things through, communicated with others, and experienced the anticipation involved with delayed gratification!

Our parcel arrived today, and when he heard the doorbell Smiler scooched along the hall to answer the door with me, rewarding the somewhat surprised courier with an unexpected round of applause when I confirmed the parcel had his new toy inside.  Squealing with glee and shaking with excitement as I opened the box, he grabbed at the paper on the top but - surprisingly - listened when I asked him to wait.   What he didn't know was that as well as the toy he'd chosen, I'd ordered three others too, knowing I can use these to occupy him all over again another three times, and each new toy will add more and more play opportunities as they can all be enjoyed together.  But I didn't want him to see them all at once, as that would have ruined the surprise! 

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Finding toys that are safe for Smiler isn't easy - trying to match up the understanding and attention span of a two year old with the strength and size of a thirteen year old is complicated.  He struggles to play creatively, needing to be led by those around him, and if encouraged to play independantly tends to revert to - let's call them 'classic' methods of interaction such as mouthing a toy, banging it on any surface in reach, and turning it over and over and over in his hands.

I've been tempted before to choose toys that will challenge him, be educational, offer opportunities for him to learn new skills; but while I might wish he'd use them in that way, over the years I've learnt that those choices are about me, not him.  He much prefers very basic toys, simply because he understands how they work and what they do, so I've moved on too, and through watching how he plays I've begun to understand what draws him to pick up a toy car over a toy boat (he likes to spin the wheels with his fingers); a drum over a whistle (he struggles with breath control but can make a sound with his hands on a drum); and a plastic figure over a soft toy (the solid shape doesn't trigger his tactile defensiveness the way a soft floppy toy would).

While some of his choices relate to his sensory needs, others are based on his seeking a sense of achievement, or maybe more accurately avoiding a sense of failure.  Because of this, open ended toys that don't have a specific function necessarily are appealing to him - with no expectations of what to do he is free to explore as he wishes.  The new toys he (and I) choose will provide him with enjoyment, which is, after all, exactly what he needs from them.  Non toxic, visually appealing, tactile, safe, strong enough to survive being dropped (or thrown), opportunities for cooperative play, for imaginative interpretation - they tick all the boxes.  Now all I need to do is sort some photos of Smiler playing with his new toy to share with you ... watch this space!

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Wednesday, 29 July 2015

Choosing colours for my glassy nook

This is very exciting - my glassy nook has been ordered!  But now I need to decide what colour to paint it.  I've nosed around and decided I like the Cuprinol garden shades range - I like that you can see the grain of the wood as it's kind of more like a coloured stain than a paint.  But, colours.


I love the dusky grey green willow, so I'm going to go for that on most of the outside,  but I want something lighter on the trim - currently undecided between natural stone and muted clay.  Whaddaya think? 

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Deep jaw pressure and the need to chew

I talked here about Smiler's Sensory Integration Disorder (SID), and some of the difficulties it has caused over the years.  One of the most obvious sensory inputs that he sought was deep jaw pressure.  This helped Smiler relax and cope better with what was going on around him - hurrah - but the way he was getting this was by sinking his teeth into his forearm/hand/fingers - boo hoo.  With his level of understanding and his genuine need to use his teeth, the sensible answer seemed to be to find something else to bite.  He went through periods of chomping on his clothes too, which seemed safer than his body, but was bloody expensive!  You could put a new tshirt on him in the morning and by lunchtime the neck was soggy and littered with little holes, by teatime he'd have made serious headway all around the hem at the front, and if it had long sleeves the cuffs would both be completely trashed by bedtime.  One tshirt, one day.

My thinking was that he needed something easy to grip and lightweight; non toxic; solid enough to provide that deep pressure he was looking for; sturdy so he wouldn't bite pieces off; big enough that he wouldn't swallow (or try to swallow) it; washable or disposable; and not stupidly expensive!  In case anyone else is facing a similar quandary, I wanted to get you started with a few ideas, so here goes...

Teething aids designed for very young children

Depending on the age of your child, these might be worth a try, and have the advantage of being a mainstream item you can pick up in a supermarket so not too demanding budget wise.  


Because they're designed to be chewed (duh!) they tick most of the boxes - non toxic and so on.  It's not tricky to find veco straps to use to attach them to car seat belts to keep them within reach, some have gimmicks which might completely float your child's boat like being freezable, or warmable, or extra nobbly.  Smiler loved them when he first started trying them, but his strong sharp teeth always won, and he'd bite through them. Once he really started chomping on them with his back teeth we knew it was the beginning of the end, and time to look for something that he couldn't destroy with such ease.

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Chewy tubes

These were designed for increase oral motor skills, so to help learn how to coordinate the muscles of the mouth and jaw, and are a brand name, not simply a description!  These look like plastic hammers, available in different sizes, with various textures.  The shape means they're easy to hold (even for children whose motor skills are not great), they're lightweight, easy to wash along with the dishes (an important consideration if they're going to be chomped on and dribbled over for hours at a time) and some children love them - Smiler was not a fan however. 


They're easy to source on this amazing world wide web of ours, just do a search for "chewy tubes".  Expect to pay about £8 each, or £12 if you go to a specialist retailer (you know how it works, tag it as suitable for children with special needs and increase the price).  Frustratingly expensive if your child looks at it once then throws it out of the window!

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Chewigem


A range of things you can chew that don't look like things you can chew,  chewigems look fab for kids or maybe teens who don't want to look 'different'.  Pendants, dog tags (military style, not the canine kind), zipper pulls, bangles - these weren't available back when I was looking for Smiler, but I can definitely see the advantage to having something chewy to hand at all times.  Prices vary depending on which item you choose and whether you source it direct from Chewigem or via another retailer, but to give you an idea the berry necklace is £15.95 and the zipper pull is £11.50.

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Thera tubing


Now this one is a bit out of left field, but in my defence it was suggested by an occupational therapist (OT) specifically for Smiler.  Thera tubing is not designed to be chewed - it is a component of a resistance based exercise program and undoubtedly says in the small print somewhere that you shouldn't chew it, so don't chew it, okay? 

Having said that, you can source it at all the usual online retailers, but expect to find it tagged as 'exercise equipment'.  It's available from some places by the metre (costing anything between £3 and £10, depending on the resistance level and how much you're prepared to shop around), other places you have to buy a box which has about seven metres in as a tube with a hole through the middle (think drainpipe, but much much smaller and squidgy) or a flat band - for chewing purposes (not that anyone should chew it) you want the tube, and check for the brand name, Thera Band, which will be printed on the tubing itself.  The different colours are different resistances, so in that picture up there the softest/floppiest is tan, and the toughest/most firm is gold.


I found a seller on ebay who sold all the different colours by the metre, and had listed some off cuts and end of roll pieces (between 30cm and 70cm) for £1 each.  Those sizes might be no good for resistance training, but perfect for my purposes.  I knotted together several pieces of different colours so there was a choice, and handed them over.  He has two separate bunches which I circulate every couple of days so they get washed and have time to dry properly, and he can choose whether he just wants a nibble or a proper all out chew.

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One last suggestion, and please don't dismiss it out of hand.  It's an idea that was - literally - whispered to me by another mum who told me it worked for her very chompy son when she had tried everything else she could think of.  He was the young man who lost two fingers to infections from chewing on them, and she was really embarrassed to tell me how and where she had found this heavy duty chewy that was obviously perfect for him.


Non toxic, washable, inexpensive, textured, hard wearing... turns out it had originally been purchased for their German Shepherd.  So, my final suggestion,

dog chew toys from a pet shop


So, maybe that's given you some ideas of things to encourage your sensory seeking child to chew.  Individuals can quickly develop preferences, and (if it's manageable moneywise) it's worth buying an identical one of any clear favourites in case of an emergency.  It might sound melodramatic but to some these chew toys can become a security blanket of sorts, and if you know they will feel the need for that security and you can't find that particular toy for whatever reason, you will wish you'd bought a spare!  Different families run to different rhythms, and it can be tricky sometimes to see outside of the box of our own experience, so even if you think it sounds like an odd idea, give it a go.   It might be exactly what your child has been trying to find. 

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Monday, 27 July 2015

What is Sensory Integration Disorder?

Like a lot of young people with complex developmental conditions, Smiler has a diagnosis of Sensory Integration Disorder, also commonly referred to as Sensory Processing Disorder (SPD), Sensory Integration Dysfunction (SID), and a bunch of other variations on the theme.

Very very basically (because I'm not sure I understand the neuroscience angle all that well) this relates to the difficulty some people have in organising and interpreting the messages their brain is receiving from their senses, and determining an appropriate response.  It's not a conscious process but more of an instinctive reaction, and affects everyone differently.  This American website explains it as being like a traffic jam, where sensations are prevented from getting to the right bit of the brain at the right time, so leading to an uncoordinated reaction which can result in all kinds of difficulties such as clumsiness, terrible handwriting, over sensitivity to texture, or difficulty chewing and swallowing.

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A parents perspective

Smiler's SID manifests in lots of different ways - he becomes really distressed at sudden noises for example.  They don't even have to be loud - an unexpected sound, or even a familiar sound out of context - it's as though it causes him physical pain, and his reaction can be pretty extreme, often lashing out at those around him or self harming.

Smiler can often be overwhelmed in busy environments - high levels of multi sensory input (audiatory/sound, olfactory/smells, visual/sight, and tactile/touch) prevent him from being able to tune out what is going on around him and concentrate on his own thoughts.  Known by many within the special needs arena as over stimulation, this state of heightened anxiety and inability to focus often leads to a meltdown - a loss of control, usually ending with a hot and angry and confused young person.  To 'outsiders' it can look like a typical toddler type temper tantrum, and as Smiler is almost 14 this garners a fair few raised eyebrows and even the odd 'helpful' suggestion from members of the public.


Smiler used to self harm every day - he'd bang his head against the floor, pull his hair out in handfuls, and bite his hands and forearms so hard that he often drew blood.  He'd twiddle his fingers around and around in his hair, cutting off his circulation and then be unable to untangle himself, his fingers all swollen and purple. Because of his development we couldn't be sure if he was not connecting his actions to the pain he was experiencing as a result, or if he wasn't actually feeling the sensation of pain.  As time went by we realised that while some of his behaviour was a result of his frustration (often at being unable to communicate with us), sometimes it was a reaction to the sensory input he was experiencing, or he was fulfilling a need for intense stimulation.

As a young child Smiler experienced extreme tactile sensitivity - he could hold a solid hard toy such as a block in his hand, but hated even touching anything soft like a cuddly toy.  Clothes were a nightmare - we had to cut out tags as they would irritate him and he couldn't stop crying, and for a while we put all his clothes on inside out because the sensation of the seams against his skin was intolerable to him.  Messy play and activities such as finger painting were impossible as he would scream as soon as his hands were wet with paint, but loved water - the inconsistency was hugely frustrating.

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Mouthing and biting 

As soon as he had the coordination to bring his hands to his face, Smiler mouthed everything, using his lips and tongue to explore anything he could hold, or bring his mouth to.  Unfortunately this wasn't restricted to checking out if something was edible or not - if he could physically fit it in his mouth and swallow it then then it was fair game (cat poo snack anyone?).  If he was laid on the floor then he'd lick it, unless it was soft, like grass, or bitty, like sand.  It didn't make any difference to him if the surface was the clean(ish) lino in the kitchen or the floor of the bus that was the only place I could put him as I folded up his wheelchair.  If he was sat in front of a giraffe enclosure and could reach the railings then he'd lick them.  If one of the cats sat within reach of him on the floor then it too was checked out with his tongue.  (I know.  Ugh.)


I'm not sure when we recognised that this constant mouthing had developed into what seemed to be a need for him to bite down hard on things.  He usually targeted his hands and forearms, and developed hard calluses on the top and bottoms of his fingers where he bit them repeatedly.  He didn't just bite and release, he was like a hamster on a cartoon who'd sink his teeth into your finger with absolutely no intention of letting go, even as you shook your hand in panic, flicking this little furry creature from side to side, slamming it against the wall or a table...

Google being handy for this type of research, I found that this was a really common feature of SID, the need for deep jaw pressure - somehow it provides comfort - a way of self soothing.  Smiler had discovered this coping mechanism instinctively, but his methods weren't healthy - biting into his flesh was destined to end in disaster, and I had personal knowledge of a teenager who had lost two fingers to infections because of his biting habit, combined with the (very common) related issue of those around him being unable to treat the wounds effectively as dressings or creams would not be tolerated, and because it was a self soothing mechanism for him, their continued attempts to clean the wounds simply resulted in increased biting and exposure to all the bacteria of the mouth.

Oops...

Having already gone on a lot longer than I meant to I'll explain some of the strategies that helped another time, but I want to change tack slightly now to talk about diagnosis.

From an academic perspective I resisted Smiler being officially diagnosed with SID for several years, believing that there is a tendency to over pathologise such activities by diagnosing a disorder when actually the behaviour might be temporary or simply a normal reaction to a situation we're unaware of.  After all, we think nothing of adults who grind their teeth when they're stressed, and others who have developed habits such as gnawing on their nails, or chewing the inside of their cheek, or biting their bottom lip when they're nervous.  I hate walking on sand - it makes me feel physically sick, but I've always considered it to be just one of those things, not a red warning flag of an issue with my sensory processing system! How to balance professionals who seemed to want to add yet another disorder to Smilers (already considerable) list with wanting to access help for him was something I struggled with - still struggle with in fact.  SID is now on that list of his, purely because it is helpful, on occasion, to be able to point to a definitive medical diagnosis as to why (for example) we need to be able to wait in a quiet corridor rather than a bustling waiting room for a clinic appointment.

Although we try not to completely avoid anything purely because of Smiler's SID we don't see the point of stressing him out just for the sake of it, so we tend to pick our battles.  Trying to protect him from anything and everything that might cause him distress would mean we were missing the opportunity to support him to manage that reaction, as well as potentially preventing him from having really enjoyable experiences.  Rollercoasters, for example, were something that we felt he might absolutely detest, but we opted to try one, just once, and he loved it, begging to go around again before he'd even got off.  Over time we've gradually found ways of helping him manage his responses to certain things, and learnt to anticipate activities and situations that he will struggle to handle, but that is a post for another day.  

Does any of this ring bells for you, or do you know it all backwards?  I'd love to hear about the kinds of things your kids (or you, or your partner!) do, and anything you've learnt about ways to manage.

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Friday, 17 July 2015

Disabled Facilities Grant - an update

So, I wrote this, spent hours emailing and phoning and tweeting everyone I could think of, and then got a call from the surveyors supervisor (who knew that was a real job!).

We're the only private high priority case he currently has that isn't already allocated.  Our details will be passed to a surveyor next week, they'll be in touch the week after at the latest. 

As far as I can see, there are two possibilities here.

  • There was no waiting list - everyone who told us there was (including four separate professionals familiar with the process) must have been mistaken.

  • One of those emails or phone calls or conversations or tweets landed in front of someone with the power and authority to do something about it, and they did. 


I got what I wanted, right?  So I should be thrilled, right?  I can move forward, get the things done that Smiler needs done, and never look back, right

But my feelings are mixed.

Yes, I'm glad it looks like things are moving.

Yes, I'm immeasurably relieved that the situation did not get as dire as it could have before our need was recognised.  I did not, I should add, ever leave Smiler sat at the foot of the stairs in jeans saturated with urine.

Yes, my son will get access to the facilities that he needs, which is what I wanted after all.


But what about the parents out there who don't have the time to make those calls?  Whichever of the options above are in fact the case and I know what I think happened another parent might have let the matter lie and their child's needs would not be met.  

We should not have to scream and shout and do research and make demands before people listen to us. 

Smiler is getting what he needs, but is that fair?  I've spoken to parents who waited for two years in similar situations, and that is not good enough.  I'm still up for creating a fuss - it is not okay that parents are given misleading advice.  It is not fair that professionals are resigned to months of waiting for things that should take days.  It is not okay that individuals who don't have the energy or opportunity to challenge get pushed to the bottom of the list. 

It's been suggested to me that these delays are because Bristol doesn't have enough money to meet the needs of the populace.  I understand that that may be the case, in which case clearly the best solution is to :
            (a) ensure people are constantly put off from applying by being told it will take months and months and months.  This means they will find other ways to get their needs meet, whether that will be borrowing money to get necessary works done, or moving when they don't really want to, or coming up with unsafe solutions to manage on a temporary basis.
or
          (b) find out how to make sure it is recognised within central government the number of potential applicants for DFGs in Bristol, together with a reasoned forecast of how this figure is expected to change over time.

If more money is needed from central government,  then BCC clearly has to be able to back this up with evidence.   Evidence of unmet need, reports of complaints, pages of figures demonstrating that cities such as Bristol with major hospitals,  special schools, (relatively) good transport systems attract those individuals whose families need them.  

I get that there are complex issues here.  I know very little of the in depth information required, but I can make some gross generalisation that I imagine are relevant. 

Nationwide, children are surviving birth and infancy with conditions that would have been fatal fifteen years ago, some of whom will have significant additional health, education and social care needs, as well as the implications this has for their parents and siblings.  People of all ages are surviving major health crises such as cancers and strokes, some of whom will require various levels of support for varying lengths of time.  Adults in the UK are living longer, decades past retirement, which combined with a trend towards older people wanting staying in their own homes rather than moving into residential care means a greater proportion of Bristolians are likely to be seeking help to do so, through schemes such as DFGs. 

Proper analysis of these national trends, together with an evidenced explanation of why Bristol in particular is experiencing increased applicants, would surely be a starting point.  But what it comes down to is this.
  • The council should not be putting potentially genuine applicants off of applying by exaggerating the length of the wait.
  • Council departments and staff should not be either tacitly or explicitly encouraging assessors to limit the number of cases they classify as high priority.
  • The process should encourage, not ignore, elements of the legislation which would make the wait more manageable for families.

I'd love to hear what you think, and what you think could be done.  Have you applied for a Disabled Facilities Grant (in Bristol or elsewhere)?  I'd be really interested to hear how it went, and what you thought the weak areas of the process were.  Maybe you're a professional who is equally frustrated by the way it works - please do leave a comment or email me.  In the meantime, I'll let you know how it goes with the surveyor - cross your fingers for me that I haven't pissed them off so much they will now be hugely unhelpful ... but actually, how sad is it that that is a genuine concern of mine moving forwards?

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