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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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Wednesday, 15 July 2015

Dream house meets reality

So, we have the house, happy happy happy, now we move in, right?

Vacate our three bedroom housing association bungalow, making it available for another family who need it as desperately as we did eleven and a half years ago, right?

Wrong.

Smiler needs access to a bathroom. He can't do stairs. We've given him the living room for a bedroom, but naively assumed we could apply for a Disabled Facilities Grant to get him bathroom facilities.  

We were wrong.  

You can't just apply, of course not, whoever told you that? *incredulous tone of voice*  Oh no, here in Bristol we put you on a waiting list to be invited to apply.  Standard priority means you'll be on this list for aroundabout twelve months.  Then we invite you to apply, you apply, then we can take six months to make a decision, then if we're feeling a bit broke we can delay paying for a further six months.  You'll be fine without those facilities for two years, right?

Oh, high priority - well that's completely different.  It'll only be about five months before we invite you to apply.  

He's a child young person (gotta switch that in my head somehow!), therefore there is no means test, not that we have any means left over to test.  There is no debate as to his need, nor to what it will take to meet that need.  As a temporary measure, we've been provided with a commode and advised to strip wash him at the kitchen sink.  Trust me when I say this is not working.  

So he's still at the bungalow.  We're paying two sets of council tax, two sets of electricity/gas/water bills, two phone lines, insurance, everything.  And of course still paying a hundred and twenty odd pounds of rent every week for a bungalow that we only want for the downstairs bathroom.

I've read the legislation, put in plenty of FOI requests to try and work out what's going on.  I know I can make an 'uninvited application', but I also know that if I do they will make the decision sooner but release the funds at the same time as if I'd waited patiently on their list 'in the interests of fairness'.  

The legislation sets out a strict timetable for local authorities regarding DFGs, but these only come into force once you've made an official full application.  But what are you meant to do when you're effectively blocked from doing that?  Should I throw caution to the winds, cross all my fingers and toes, avoid ladders and black cats, hold my breath and hope to meet the partly whispered 'if you do the work before you get approved we won't give you any of the money (unless there are exceptionally exceptional circumstances)' criteria?  But surely everyone they label as high priority has these exceptionally exceptional circumstances?  Do they just assume you won't have the balls to risk it?  Do you think you could get some kind of agreement in principle that they would consider your circumstances exceptional and then start the work before you get proper actual official approval?  Surely the reason these statutory timescales exist is to ensure people with a genuine (and agreed) need for adaptations to their homes get them in a reasonable amount of time?

It's been suggested that I 'encourage' Smiler back into pads, as this would be easier to deal with without needing to get him upstairs.  He's been out of them for less that twelve months - how am I supposed to explain this to him?  How is the official advice to simply strip wash a teenager in the open plan kitchen of a family house?  How does that mesh in any way with respecting his dignity and encouraging his independence?  

I've phoned the Accessible Homes people - the council gatekeepers for the DFG.  They tell me they need to talk to their supervisor, the surveyor, the surveyors supervisor.   They tell me they'll be back in touch. 

I've written to my local MP - though technically with two homes I guess I have two MPs - maybe I should get the other one in on it too? - her office tells me they've contacted the council on my behalf and will get back to me as soon as they hear anything.

I speak to some of the big cheeses I come into contact with at the council through Bristol Parent Carers - they exclaim in shock - they can't be right,  surely?  There must have been some kind of misunderstanding...

But no.  It seems this is the case.  If you are assessed as being high priority, you still face a wait of five months before you can apply for the mandatory grant to adapt your home to meet your needs.  

How long without a bath or shower before my child teenager is officially being neglected by me?  How about with no access to appropriate toileting facilities?  Am I supposed to leave him sat in a puddle of urine at the bottom of the stairs, assuring him he is high priority you know, and it's only five months before we can apply, and he'll just have to manage?  That has to be unacceptable behaviour on my part, of course, but how am I supposed to avoid it?  I can't get him upstairs, and I can't magic him accessible facilities downstairs.  That isn't good enough - that isn't acceptable.  But then surely, the system and processes that result in that situation (despite my best efforts) are also unacceptable?  And what can I do about that?

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Please read on with this post to see what happened the day after I posted this one ...

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Super Busy Mum

Wednesday, 8 July 2015

Ramblings


I feel like I'm living some kind of half and half life at the moment - there's the ordinary me doing the ordinary stuff, watching crap on the tv, going to appointments, watching more crap on the tv, then there's the covered in an appealing mixture of plaster dust and sweat, random ripped pieces of soggy wallpaper stuck to my feet bit of me, doing all manner of very grown up things like dealing with energy performance certificates and gas meters and lintels lyntals lintels window related stuff (although clearly spelling is still beyond me).  Logically I'm not sure why owning a place should feel so different to renting one, but it does.  Maybe because the bungalow was a new build, so this hundred and thirty something year old house is the first time Mr and I have found ourselves stripping away layers of someone else's life together, while sipping numerous cups of tea and sharing chips wrapped in paper and commenting knowledgeably about the condition of the plaster under all the wallpaper.


Okay, that's my random thought of the day. Back to the walls.

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Saturday, 4 July 2015

Smiler and Open Up Music

So proud of Smiler, and wanted to share it with anyone out there who might read this.  

It feels a bit like that advert for Calpol (all hail calpol), you know, the one that says 'if you've got kids you'll understand' - well, if you live in that world of special needs / additional needs / disability / whatever we're calling it this week,  you'll understand.

Smiler has been working with the folk at Open Up Music at school for months, which cumulated in a performance at Bristol Colston Hall on Thursday, which kicked off the Fast Forward Music Festival.


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I'm struggling to find words, so here are some photos to show you how it went.


Smiler using the fine motor skills he struggles with on an ipad app developed by Open Up Music with him - long slow movements - a real challenge for Smiler, but he was fab!  Note the tshirt - a gift from the organisation that Smiler has asked to wear each day since.

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Here's Barry,  conducting this incredible school orchestra (including Doug playing the cello) - you can see how enthusiastic and utterly involved he is, and just look at the kids - they are completely focused on him.  His passion and perseverance when it comes to inspiring the students is amazing, and the vision and hard work of everyone at Open Up Music has created something really special.

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...and we didn't know this bit was coming.   Smiler had stopped playing the ipad and was shuffling on his seat - I wondered what he was up to, but it turns out it was time to him to move to a different section of the orchestra to play another instrument...


...which he did with aplomb, although also with his back to the audience.  Ah well, you can't have everything.

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Loads of staff from the school had come along to support the orchestra, and it was not only the families that got a bit misty eyed.  Although school is always really positive about Smiler, so much of what you do as a parent is unavoidably concentrated on what your child/teen can't do, or struggles with.  Those dreaded DLA forms, the hospital appointments, wheelchair clinics, housing adaptations (don't get me started!), prescriptions, physiotherapy, splints...  This opportunity focused entirely on recognising, supporting and celebrating the music that this far from ordinary school orchestra created, so thank you, Open Up Music, for sharing music with us all.


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