Wednesday, 10 February 2016

Why I love my earphones

Like a lot of people, I've been accustomed to a certain level of background noise while I'm getting on with whatever I happen to be doing.  Whether that meant having the radio on when I'm cooking, a favourite playlist on repeat while I was studying, or the TV on while I did household paperwork, I kind of needed it - it helped me to focus.  

The Brain Cloud changed this completely - any sounds while I was trying to concentrate would throw me completely - I just couldn't follow a train of thought.  I could be halfway through a sentence and Eli would bark, I'd stop talking and Mr would be left in suspense - 'and then what?' - I couldn't remember what I'd just said, never mind what the next sentence was going to be.  I couldn't handle a conversation with two other people - trying to skip between two people talking - often, as conversations tend to, interrupting and talking over one another - I just ended up utterly confused. 

Other times I would be listening to someone, hearing the individual words that they were saying, but not understanding what they meant.  I don't mean I didn't understand what they were getting at, I mean I didn't know the words they were using.   It was as though they were speaking in a foreign language - I could hear them, I just couldn't get their meaning.  As you can imagine - hugely frustrating for someone whose job relied on good communication skills, and picking up on what was going on between the lines.  Irritating for everyone around me too of course - cue several years of eye rolling, deep sighs, and "I've already told you this mummy.  Twice".  

I gave up trying to watch TV as it was too difficult to keep track of what was going on - my memory was atrocious anyway, so I could take the kids to the cinema in the morning then suggest that afternoon that we went to see the same film - they would tell me what happened and it would not ring even the smallest bell in my mind.  The words spoken on screen seemed to stream straight out of my head - they just didn't stick.  I had to concentrate on the actors faces to remember who they were, and it was as if my brain could only deal with one input at a time - if I was focused on what I was seeing, I couldn't hear anything.

Another aspect to the intermittent disconnect between my ears and my brain was the times that info did go through, but seemingly at a hundred times the volume.  As soon as anyone raised their voice or got even a little annoyed, it was as if they were screaming into my face - I was completely overwhelmed.  You know how some people have issues with certain sounds - nails scraping on a blackboard, that kind of thing?  It creates a physical reaction, and often an emotional one too.  If anyone got annoyed, I started to have a panic attack - I couldn't breath, I felt sick, I would shake and turn pale.  And I don't mean if people were having a screaming shouting argument - I mean when Petal would grumble about whose turn it was to brush the dogs teeth.

My hypervigilence caused all kinds of problems, but the over sensitivity to sound meant that I jumped out of my skin at any unexpected noise.  The doorbell going or the phone ringing was like torture, to the extent that my phone was in a drawer for a year, and the doorbell was unplugged because I couldn't control my reaction, having panic attacks daily and the panic attacks were happening every day.  

It wasn't until I was talking to somebody last year about Smiler's Sensory Integration Disorder that I suddenly made the link between my extreme reactions and confusion and the fact that they were all triggered by, or related to, auditory input.  It was as if the clouds had parted - now that I had realised the common factor involved with many of my meltdowns, I could do something about it.

I tried a few different types of ear plugs before I found some that muffled sounds enough to make them managable without cutting them down to a level that I couldn't hear enough to understand what was being said.  Now if I'm going somewhere I know will be noisy but I won't need to pay attention to the sounds - a supermarket for example - I put in earplugs before I go in, and return them to a little case in my pocket when I get to the till.  If I'm having trouble following a group conversation I asked people to slow down, and tell them I have Auditory Processing Disorder (a sense specific type of SID).  Practising techniques I've learnt help lessen the panic responses I have to other people getting angry or annoyed, and putting the subtitles on whenever I watch the TV means I can (mostly) follow what is going on.  When I need to concentrate, I put familiar music on so it blocks out any unexpected sounds.  Usually earphones, usually loud, it means I can cope with being in the same room as other people.  

Right now, for example, Noah and Petal are playing a complex version of Monopoly Deal, with extra rules that they've agreed before they started.  As well as the obvious shouts of joy and annoyance when each of them gains and loses millions, I know 'heated discussions' are likely to break out.  A year ago I would have either left the room, realising I wasn't going to be able to handle it; or stayed put, and ended up upset or panicked or annoyed when the inevitable happened.  Instead, I pulled out my earphones and started a playlist that I know will overlay the sounds they're making, so I won't crumble {Nickelback, by the way. Nice and shouty}.

If I hadn't been able to work out ways of managing, I don't know where I would be right now - very possibly hiding from the world (and the kids) in bed, or maybe somewhere else completely, unable to be around the people that I love.  That's one of the aspects of PTSD that ends up being so isolating - when you can't make sense of what is going on around you, and every instinct you have is telling you to run or fight, when that might well end up making everything so much more difficult.  My earphones mean I can be around people - it's as simple as that.  

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Thursday, 4 February 2016

Disabled Facilities Grant daftness

I hate red tape.

You know, bureaucracy for the sake of it.

We're at the point now where we've applied for the DFG, and it's been approved (yay) and we have a shortfall of just over £25K (boo).  Council procedure is that when there is a shortfall, they refer you to a loan company which lends to people who can't get credit elsewhere.  I don't mean Wonga type loans, I mean an ethical company which looks at your financial information and - if you can demonstrate that you can afford the repayments - lends up to £25K.  With neither of us working right now (me medically retired because of the brain cloud, Mr looking after me and Smiler as well as Petal and Noah) we'd be unlikely to get approved for a loan through any other means.  IF we get this, we still need to find about five grand, and we're hoping that small amounts from a few charities, together with what we have put by, will mean we're sorted.

The problem?

The charities can't make an award unless a DFG has been approved. Fair enough.  So I asked for a letter from the councils Accessible Homes team to send to the charities.  But they can't give me that until ALL the funding is secured - the whole of the £25K shortfall.  So I need to secure all the funding before I can get a letter that states they are awarding the DFG.  If I could secure all the funding, I wouldn't need to be applying to charities.  

Did you ever see a film called The Secret of My Success, with Helen Slater and Michael J Fox?  He's trying to find work and ends up asking an employer (who has just turned him down because "we need someone with experience") how he is supposed to get experience when he can't get a job to get any experience until he has experience (fab film by the way, so long as you can get past the eighties hair and shoulder pads and casual sexism).  


I hate red tape.

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Friday, 15 January 2016

Going round in circles...

Having one of those weeks when it feels like we're in some kind of old style comedy sketch.  You know, with the music and the speeded up people going in and out of doors looking for each other and missing each other by seconds?

Decide to go out in the van
Van won't start
Decide to jump start off of car
Find jump leads
Drive car up next to van
Jump leads won't reach
Bush in the way of getting car closer
Decide to cut down bush
Look for saw
Can't find saw
Ponder driving car to new house to pick up saw, driving back to bungalow, cutting down bush, driving car closer, attaching jump leads, jump starting van
Remember saw at new house needs a new blade
Drive car to new house, collect saw
Drive car to shop to get new blade
Fit new blade to saw
Cut down bush
Drive over bush stump to get close to van
Jump leads still don't reach (can't get closer as bungalow in the way)
Drive car to shop to get jump start battery thing
Charge up jump start battery thing day...
Jump start battery thing does not work
Drive car to shop to get battery charger
Try to remove battery from van in order to charge
Search for tools to remove battery from car
Realise tools are at the new house
Ponder driving to new house vs buying new tools

Ladies and gentlemen, my life.

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Tuesday, 15 December 2015

In which Smiler doesn't have an injection. Again.

Sometimes I wish I could drag individual members of staff around with me for a day or two, and subject them to my continual internal monologue revolving around appointments and medicines and letters and all the other boring repetitive minutiae involved with parenting a young person like Smiler.  Maybe then they wouldn't be quite so cavalier about leaving Mr and I hanging for an entire morning.  Maybe then they would realise when we say "we need to have this done by 12:30", we actually mean that this needs to be done by 12:30.  We aren't being awkward, or picky, or dictatorial in any way, it's because we have reasons.

It's the ordinary, newly minted, year nine meningitis vaccine.  To be done in school.  We got the consent form, signed it, sent it back.  The first school nurse asked me if Mr and I could come in when it was to be done, knowing that as cooperative as Smiler generally is, that this (along with nose bleeds, which she's seen) is likely to give her front row seats to the show of a whole nother side.  She told us that without having us to 'help' (=hold him down) she didn't feel she could safely give him the vaccine.  We were fine with this, we agreed that when he's anxious he can behave very unpredictably, and he could hurt someone (or himself), and that wasn't something anyone wanted to risk.  No point in giving him any advance warning, as it would only stress him out and mean he was even more agitated when the time came, so we plotted exactly how it would go, who was holding which limb, and we were all set.

The appointed day dawned.  Smiler's special school shares a site with a mainstream secondary school (attended by Noah and Petal), and in their infinite wisdom the individual organising the clinic (not the school nurse we'd been coordinating with) decided they'd do the mainstream year nines first.  The two hundred plus mainstream kids.  Before the single one that had already involved military style planning, and two carers were needed for.  So, the vaccines arrived at ten, and at 12:30, we still hadn't had that phone call telling us operation Inject The Teen was on.

It didn't happen.

'It's okay, we'll do him in the catch up clinic in two months'

Never mind that Mr and I had spent the morning avoiding starting any jobs that couldn't be walked away from when they phoned us.

Never mind that I'd barely slept the night before, feeling guilty knowing that he was going to hate this, maybe hate me, maybe I'm a terrible parent, maybe he'll hate me forever ... over and over and around and around (welcome to low self esteem and borderline personality disorder with PTSD thrown in just for kicks).

Today was the catch up clinic.

And guess what.

It didn't happen.

And I ended up in a ... let's call it a 'heated debate' ... with the other school nurse who, when I pointed out that this was the second time Mr and I had both completely wasted a morning because of this, thought it appropriate to tell me that she'd vaccinated all the 'ASD kids' (her wording, not mine) with no problems, so she didn't see why we felt it necessary to be involved.  I pointed out that she had never dealt with Smiler when he was in Everyone Get Away From Me mode, so she didn't know what his needs were at that time. 

I was loud, she was loud.

I felt she was brushing off my knowledge of my son.

Maybe she felt I was questioning her knowledge, her experience.

I - irritatingly - ended up almost in tears, while still red hot angry with this woman.

So it hadn't been done at the main clinic.  Then it wasn't done at the catch up clinic.   They won't do it at the GPs  ("your young man is just too complex for us here"), so now Mr and I will have to take him to the hospital to get the damn thing done.  And he's not stupid - when I don't make my usual en route 'no baby, no injections today' promises, he'll know what's happening.  So that's at least an hour of his stress levels through the roof, us spending the morning wrangling him, him missing a morning of school, his teachers dealing with the fallout the rest of the day, and us trying to contain his anxiety for the following week and month and year.

Never mind the lessons to be learned, never mind the email currently being composed by an angry sprite on my shoulder to the person who decided to vaccinate two hundred plus mainstream kids before one problematic one TWICE and waste several child-free two-person parenting hours (a precious commodity in the last week of the school term).  

How does respecting parent carers and their wealth of in-depth knowledge of their children and their needs translate into 'why you feel you need to be involved is beyond me'?  

How about putting Smiler first?  In front of the egos, in front of the (on paper) most time efficient way to run a clinic, in front of the inconvenience of having to have parents hanging around?  How on earth does this reconcile with the oft referenced 'person centred planning'?  

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Tuesday, 17 November 2015

In which I ponder disability Olympics - when parents compete over whose child is the most disabled

I do not get the disability Olympics.   

I don't mean actual Olympics, special or para or bog standard ordinary, I mean the weird competitive mindset some parents seem to get into when talking about their kid with additional needs, special needs, disabilities, or whatever the PC term is this month.  You know about Overly Proud Parenting of Genius Children, right?  The parents with the kids who walked at ten months, were out of nappies at eighteen months, spoke in perfect complete sentences when they were two and could read and write by the time they turned three.  These are the parents who always have freshly washed hair and no dried weetabix handprints on their jeans.  Also an active sex life, tidy home and shoes that match.

Disability Olympics is a kind of distorted reversed version (of the kids end at least) - it's not about how well your child is doing, but completely the opposite.  It's all my child is the most disabled child that there is.  There's that classic oh yes, mine has that too, and also this one upmanship based strategy, often linked to besting anothers achievement in the fields of services or equipment so he's going to get physio/splints/gaiters/wheelchair/bionic legs/personal valet; there's the his doctor said she'd never seen a nose/kidney/white cell count/hair folicle quite that high/low/big/small before tactic.  This shouldn't be confused with the humble brag approach though - usually distinguished by comments such as so I just can't leave him alone for a minute because he hacks my bank account/rearranges the dvds into alphabetical order further broken down by genre/reprogrammes the autocorrect on my phone so it looks like I'm using the wrong their/there/they're.

The calm reasonable big picture part of me wonders if this is (at least partly) about the validation of the carers identity - see how much help/support/bacon my child needs, and I'm the one who says it/sorts it/cooks it for them, therefore the greater their need, the better carer that makes me.  The selfish grumpy bitchy part of me (much more in charge on days like today, in case you hadn't already guessed) grumbles (mostly internally, you'll be relieved to hear) that attendence at a special school is not the holy grail that will automatically mean your child gets all the physio/ot/SALT support that is needed; you as a parent don't gain another halo for every consultant that sees your child; and actually, if your child is in mainstream school with no additional support, and you're able to work, and go out for the odd evening leaving them at home with the teenage daughter from next door as a babysitter then you have no fucking clue what you're talking about.

It's the extremes that people don't see, so maybe when comparing their child to the completely wonderfully ordinary Cousin Fred they think well hang on a minute, he doesn't need any of the faffing that my child does, so obviously my child is a long way away from the average.  Maybe they don't have the opportunity to put it in context.  How about lining up with Cousin Fred on one side and on the other a child with no speech, tube fed, oxygen dependant and a third volume of hospital notes measuring over four inches thick, and then have them pick a side?  

Those parents - the ones who run through a fifteen minute long med routine four times a day; the ones who don't get upset by general anaesthetic anymore because they've seen their child through it so many times now; the ones who know in a glance what kind of day today will be for their child because their body language and facial expression is the only way they communicate - it's those parents that tend to talk it down and then go and get on with it because they're too bloody exhausted to do anything else.

It's those parents - and kids - that remind me it could all be so much harder, and that whatever challenges Smiler faces in the future, they're nothing compared to what others are living with now.  Maybe spotting someone worse off (and I'm trusting you'll know how I mean that) makes me feel my son is closer to the level of that gorgeously ordinary Cousin Fred, and I'm certain Smiler is someone else's worse off too.  It just seems sometimes that the more complex your child is (or life around your child is, by the time you've taken into account the huge amount of admin these kids lives need), the stronger that yearning is to be ordinary.  
So, disability Olympics. Don't get it.

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Rant over. Normal service will resume shortly.

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And then the fun began...