If I told you what the title is, you’d never read on…

 

Happy New Year my lovelies!

 

I hope this year is a happy, healthy one for you all.

 
For our first post of the year – and to celebrate our blogs fourth birthday (woo hoo, yay, go us!) – I thought I’d start off with something jolly and uplifting…maybe about our recent holiday to lovely, lovely Cornwall perhaps?…or possibly our aspirations for this shiny New Year?

 
Well….erm…that was the plan anyway. However, life doesn’t always pan out as we anticipate, does it?

 
So, in this post, I’m going to talk to you about something that got a bit out of control recently….

 

 

 

Self-harm

 

 

(See? told you you’d never read on if I told you what the title would’ve been! We’d love you to stick around though, as this stuff doesn’t get much press. However, we’ll totally understand if you’d rather go and do something else)

 

 

So, you’re sticking with us then?

 
Great!

 
Let’s talk about self-harm, shall we?

 
Or, if you’re feeling posh (or are a bit posh), then you could refer to it as ‘self-injurious behaviour’…but that’s more of a mouthful, so we’ll stick to calling it self-harm, because it’s easier…and I’m not even remotely posh! *bows*

 
(btw, I’ll be referring to Hannah’s specific self-harming behaviours in this post)
But whatever you call it, it’s rubbish. Really, really, utterly R.U.B.B.I.S.H.  And, as her mummy, every time I see Hannah hurting herself and can’t stop her, my heart breaks a little bit more.

 
…it’s the bane of my life – well, one of them, at least!

 
So, what is this self-harm stuff and why did it get out of control recently?

 
Well, on the morning we were due to set off for our holiday to Cornwall…

 
(At this juncture, Barbara shouts to Derek in the kitchen “Derek, DEREK!!!!, she’s going on about Cornwall again…forget the tea, get the bottle of sherry off the top shelf…it’s going to be a long one!).
Fear not Barbara, Cornwall will not be mentioned further in this post. You’re welcome!

 
n.b. for those of you who’re new to this blog (hello, welcome, thanks for stopping by!) a mere mention of Cornwall and you’ll see me salivating like one of Pavlov’s dogs.  I/we LOVE the place…but don’t live there…yet!

 

 

Anyway, back to the post…

 
Hannah woke with a very red, inflamed, rather nasty looking hand.

 

self harm 3

Ouch!

 

 

She’d been biting throughout the week – mostly when I wasn’t around (sneaky!) – and, whilst it’d been triggered by her new molars coming through, it’d become (as it does) more a bit of a habit, rather than a further reaction to pain.

 
…it’s ever present. But sometimes it peaks and sometimes it plateaus. We were on a HUGE peak!

 
Not only was it the worst I’d ever seen, but nestling in the centre of her wound was a dodgy looking hard black lump.  BLACK!

 
Gulp!

 
I promptly phoned our GP.  The receptionist wasn’t remotely interested.  Nice!  Thanks for that!

 
So, I contacted our lovely, lovely Community Nurses, who were more than happy to help us if we were able make the trip across town.  Not a problem, we said.  The car and the roof rack were fit to bursting with all our holiday stuff, but that wouldn’t stop us.

 
Erm…well…that’s after the RAC man promptly came to our rescue to replace the cars faulty battery.  The battery which could’ve gone on the blink at any time during our travels down South, rather than on our driveway!

 
Then off we trotted (okay, drove) to see the lovely nurse, who, after taking a look at Hannah’s hand, was eager for us to go on our holidays, but advised a little trip to A&E (the emergency room) was advisable first, or when we got to our destination.

 

self harm 1

This is really good fun, mummy.  Can we come here again?

 

So, off we went again. Back across town.

 
As we entered the Children’s A&E department, all I could focus on was the sea of disposable vomit bowls stuck to little people’s faces. Great! Not only was I now envisaging Hannah’s hand dropping off from necrosis, we were now breathing in the putrid fumes of a thousand (slight exaggeration) norovirus-infested-urchins and so we’d all end up suffering from said vom-bug throughout our Christmas and New Year holiday!

 
Great.  Just sodding great!  That’s all we need!

 
As a result, we sat, immobile-ish, trying not to inhale too much, in a corner, out of the way, for the whole of our wait to see a hospital doctor.

 
Waiting done.  Inspection made, despite small wiggly persons protests.  No major concerns raised, but hyper vigilance recommended over the next few days (not a problem…already do that!) as her biting had caused an internal bleed.  Bandages and dressings applied…and more bandages and dressings supplied, with advice to seek support in Cornwall if necessary.  We then set off on our jollies. Yay!

 
What a faff of a day that was though.

 
…but as much as the NHS is getting rather a lot of negative press at present (part of my theory being so the Government can justify to us that it all needs selling off to make it better…Grrr!), the staff we saw on our travels were fab-u-lous.

 
It was tricky to keep the bandages and dressings on and subsequently change them, but we did, and after a few days the wound had healed and everything settled, thankfully. And thus began Hannah’s fervent interest (obsession) in picking at the scab *sigh*.

 
But how can I stop it all?

 
Well, as much as I’d like to, I can’t.  Simple as.

 
If I could, then I’d patent the ‘cure’ and make myself a very wealthy woman!

 
Hannah bites when she’s excited, in pain, frustrated, to test mine or others reaction (oh, she’s a tease!), out of habit and for a whole load of other reasons.  Sometimes she nibbles, sometimes she bites down hard to the bone, and sometimes she then pulls the skin violently away from her hand.  The only time she doesn’t bite is when she’s asleep.  She also picks at the skin on her fingers.  And when you have a child with additional needs/these behaviours, all these well-meaning people give you lots of unsolicited (totally useless) advice.  In their opinion, you, as the parent, who probably/hopefully know your child BETTER THAN ANYONE ELSE ON THE PLANET obviously are a bit useless and aren’t addressing the problem, so they’ll advise *rolls eyes*. And you, being Soooooooo accustomed to this form of ‘counsel’ over the years, will probably smile kindly, thank them, explain a bit, whilst imagining your eyes rolling around in the back of your head.

 
See, thing is, you can’t stop it.  You can’t cure it.  It is what it is.

 
All you can do is be vigilant.  Try to discover the triggers.  Alleviate, calm, avoid, distract or whatever works for your child.

 
So, who can self-harm?  Well actually, anyone can.

 
Self-harm can take a variety of forms and you don’t have to have profound disabilities like Hannah.  Heard of people cutting their skin? Heard of people misusing alcohol or substances? Heard of anorexia or bulimia? According to the NHS they’re all forms of self-harm; when someone intentionally harms themselves.

 
However, the most common forms of self-harm for people affected by CdLS (the syndrome Hannah is diagnosed with) are scratching (or picking), biting and head hitting or banging.  Been there, got the T-shirt on all of those! *sigh*

 
Several studies have suggested that self-harm in people with Cornelia de Lange Syndrome (CdLS) has a compulsive quality (you don’t say!). Approximately 60% of individuals who have CdLS will self-harm at some point.  Unlike other people with different intellectual disabilities, it’s more likely to be directed towards the hands; it’s more likely to take the form of biting and there’s some evidence to suggest the behaviour needs active control by self-restraint.

 
Bit of a grim read, huh?

 
Anyway, let’s wrap this up shall we?

 

 

If you’re remotely interested in finding out more or are a parent of a child with additional needs/CdLS who self-harms, then here’s some resources which you might find useful.

 
NHS definition of Self-harm: https://www.nhs.uk/conditions/self-harm/

 
Self-injurious behaviour in children with intellectual disability: http://w3.cerebra.org.uk/research/research-papers/self-injurious-behaviour-in-children-with-intellectual-disability/

 
Self-injurious behaviour and Cornelia de Lange Syndrome. A guide for parents and carers: http://www.cdlsusa.org/docs/publications/behavior/self-injurious-behavior.pdf

 
The FLACC Pain Scale: http://www.cerebra.org.uk/help-and-information/guides-for-parents/pain-in-children-with-severe-intellectual-disability-a-guide-for-parents/

 

 

So, I guess that’s all for now, my lovelies.

 
Thanks for stopping by,

 
(I’ll try to make it a jolly post next time!)

 
Until next time

 
Annie xoxo

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4 Responses to If I told you what the title is, you’d never read on…

  1. MS says:

    It’s awful and you are right, there is not a thing you can do to stop it. One of my children uses objects to secretly hurt themself and it is absolutely grim finding out afterwards. I’ve been waiting for this ‘phase’ (if only!) to pass for a while! On on, Mrs Brocolli….xx

  2. Hi Annie, Barbara from Boston here, although wordpress calls me etherael for some reason. Hope your holidays were as good as possible. A thought on the compulsive biting. There are nasty chemicals you can buy that taste awful – NOT the answer. At the risk of being thought by others as a horrible person, although in a previous life I was a mental health professional, you could consider putting a natural substance like lemon juice or something else she does not like the taste of on her hands. It won’t harm her, may reduce incidence of biting, will give her some vitamin c if ingested, and can be stopped if unsuccessful (hows that for the worlds longest run on sentence.) Your family is in my thoughts. Happy New Year. Cheers. Barbara (cglasshag@yahoo.com)

    • Hello lovely lady! and Happy New Year to you too. Hope this one is a happy, healthy one for you. I don’t know why it’s calling you ethereal either…that’s baffling. Awh, thanks so much for the suggestion. I have actually got some of that nasty chemical stuff – bought a couple of years ago after recommendation and it’s never been opened. I’m not a fan of chemicals. I must throw it away. I was worried it’d set off Hannah’s reflux off, then we’d be in the biting arena again! and, unfortunately, citrus really does set her reflux off…we just can’t win! She won’t wear gloves, so anything protective is pointless. Although she did wear gloves for a couple of hours whilst on our holidays and whilst she had her bandage on…yay! progress! and then she threw them off, refusing for them to be put on again. We’ll keep trying though. xxx

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