Remember who said that?
Ah, I went all mushy when I first watched that film.
I’m sure Patrick Swayze melted a gazillion hearts when he was chucking baby around – rampant masculinity oozing out of his every delicious pore. Btw, if you’ve never watched the film Dirty Dancing, please do not be disturbed; he didn’t actually chuck (i.e. throw) “an actual baby” around (God forbid!)…baby was, in fact, a grown up girl ready to go off to join the Peace Corps or something. She appeared to enjoy the chucking around stuff and it was consenting…and not harmful…as far as I can gather (although poor Patrick could have put his back out at any time!).
Anyway, I digress.
Regrettably, Patrick, with his muscles and his black sweaty vest and his skinny jeans has absolutely nothing to do with this post….it’s just my attempt at a little light entertainment as a prologue…before I get a little something off my chest.
“Oh dear” I hear my friends cry…”when she says she’s going to get something ‘off her chest’ that’s code for – she’s going to BLOW!”….”stand back everyone, take cover and protect your ears”…”this isn’t going to be pretty!”.
Yes, at this present moment in time I am at risk of having a big, mahoosive, potentially humanly combustible ‘rantathon’ and am using this as a cathartic exercise. However, by the time I’ve dipped in and out of this post, edited it several times, cut loads of expletives out of it and finished it and posted it to you, the feelings I have right now will have dissipated, the words on this page will have completely changed, Hannah will be OK, the birds will be singing and all will be well with the world….hopefully!…and it won’t be a ‘rantathon’ after all.
Sorry about that.
Right, bear with me…this may be a bit of a ramble (nothing changes then?)…let’s set the scene: Baby is in fact, my baby i.e. Hannah
She’s never been “put in a corner” – as far as I’m aware (and woe betide anyone who attempts to do so – they’d have ME to deal with!). I just thought I’d use the title as it was relatively apt and a bit catchy and, well, I liked it.
OK, so, I want to talk about supervision, observation, alertness – call it what you will; but it’s about being constantly vigilant and aware of the needs and safety of a disabled child.
It’s not something that’s optional.
Not in our world anyway.
It’s not something you can put off until tomorrow….”oh, I’ll have a look at her after/in a bit/after lunch/manana”, you may think.
That would be very, very (very) imprudent.
That would put Hannah at risk of harm.
So, why am I rattling on about supervision right now, then? Well, in brief, my ‘rantathon’ developed recently because of an…erm…let’s call it an ‘incident’ for arguments sake. You may have seen stuff about it on our facebook page. Without trying to offend anyone, point the finger (pardon the pun!) and name names, Hannah sustained a very nasty cut to her finger recently whilst not in my care that could have very easily been avoided. Personally, I’d put it down to negligence, sloppiness, lack of protocol.
What makes it even MORE not OK and makes me very, VERY cross, is there were no witnesses either!
Grrr! *EXTREMELY angry mama face*
Hannah needed to get her hand checked out in hospital, have an x-ray to ascertain whether there were any fractures and have her wound dressed and her hand bandaged. She’s been uncomfortable and distressed at times to the point where she’d hit herself in the face and 6 days on at the time I commenced writing this post, her wound is still bleeding a little (edited here: we’re 14 days on and it’s fine-ish now – Hoorah!). It caused me MUCH angst. I didn’t sleep very well initially and was decidedly twitchy, because of the risk of infection. We also had to see the community nurses every few days for them to check her finger and change her bandages – which isn’t great when you have a child who you can’t reason with or explain what’s happening or even prepare her for it. Plus, she has UNBELIEVABLE strength, so it’s often been a three man job – 1 or two to pin her down/distract her/calm her and the other to change the dressing and if she wasn’t feeling too co-operative at the time, it wasn’t a pleasant experience…for any of us!
You see, for those of you who don’t know about Hannah, she’s non-verbal and has a rare genetic syndrome that pretty much affects all aspects of her life. Her pain thresholds aren’t like that of an average child. She can’t tell me how she’s feeling or even gesture to where her pain is. So, when she’s hurting or unwell, it’s all about detective work or guesswork, relying on your psychic mummy abilities, winging it, covering all bases.
You get my drift?
We do a lot of ‘winging’ here at Broccoli HQ *sigh*
So, I have a child who is significantly globally developmentally delayed, has learning difficulties, no means of communication, hearing impairment, autistic spectrum disorder and sensory processing disorder and a WHOLE host of other labels and stuff that I won’t go on about (again).
Hannah can probably manage to get around when she knows her indoor environment – with an adult to guide her; although getting about outside is often another matter, but I won’t go into that right now either, but she can be fast…I mean really fast…that’s if she’s not falling over because of her ‘fastness’. She’s spontaneous. She puts everything in her mouth – edible or not. She has no sense of safety – for herself or for others.
She’s a dedicated little sensory seeker. A whirlwind. A pocket rocket!
She certainly makes her presence known, that’s for sure.
She’s often in her own lovely little world…Hannah’s world. At times, her environment can be confusing and she’ll use lots of hand staring to centre herself….at other times, she’ll grab life by the horns and throw herself into whatever is presented before her.
She amazes me!
But she’s a bit daft sometimes…like most kids.
I wished I could bottle her energy, keep it with me and have a quick swig of it from a hip flask every now and again just to perk me up…I’m sure it’d be even more effective than a double espresso!
Now, I’ve just scratched the surface of Hannah’s world just to give you a pen picture.
When awake, she’s mostly mooching around exploring everything and anything….and that’s great, that’s all part of learning and I never thought we’d get to this stage, so I celebrate it and encourage it. However, given what I mentioned earlier, this throws up some conundrums:
Hannah, like most kids, can’t be wrapped up in cotton wool. That wouldn’t be fair; she’s a free spirit. She needs to explore and mooch and experience and soak up everything around her.
She’s never been intentionally demanding of anyone’s attention really, so I think it’s probably quite easy at times for people just to let her get on with things and leave her to it. However, it’s up to the person looking after her to actively get involved in HER world. Not vice versa.
So, given all that stuff I mentioned earlier, she could easily choke if she puts something in her mouth. She could eat something harmful. She can physically hurt herself and not have any means of expressing where she’s hurting. In fact, I’ve read of children with Hannah’s syndrome that have broken bones and it isn’t immediately obvious they’ve hurt themselves…they’ll just carry on as if nothing had happened.
That scares me.
That scares me a lot.
So, when I entrust others to care for her I have expectations.
YEAH! Fancy that, eh?
How utterly selfish and overly demanding of me!.
I expect, for her to be monitored – constantly.
I expect those caring for her to have eyes in the back of their heads and to use them.
I expect her to be kept safe.
I expect people to get to know her and all her little idiosyncrasies.
I expect to be informed of any issues.
Blimey! That’s a lot of expectations.
Am I a neurotic mummy?
Do I care if I’m given this label?
NOT. ONE. BIT.
Am I overly anxious?
Again, perhaps, at times.
Should I feel guilty for this?
Nuh huh, nope. Definitely not.
Is part of my role to advocate for Hannah and protect her?
Hell, absolutely, YES!
Sometimes I have no other choice but to entrust Hannah’s care to others. I can’t be with her 24/7. So, I NEED peace of mind that she’s safe.
And right now, I really NEED some massive reassurances.
Now, don’t get me wrong; accidents happen. I get it. I really do. I totally understand. In fact Hannah’s had several bumps and knocks even when someone’s sat or stood next to her – including me!. But exploring, mooching, climbing, bashing things around, being generally, well…a bit bonkers really, is all part of being a kid. Gosh, I recall having so many bruises all over my legs when I was a child that you’d think my parents had beaten me with a stick on a daily basis. They didn’t btw!…and Hannah seems to be following in my footsteps!
I SO understand how tiring having to be constantly vigilant can be. Honestly, I do. I’ve been doing it for almost 6 years now and some days (especially when I’m feeling under the weather) it can be absolutely draining; the only respite being when she’s asleep. I’m not moaning btw, I’m merely stating a fact.
So, how do we stop Hannah having bumps and accidents?
Well, we don’t. We can’t. That would be impossible.
She’s active – thank the Lord!
We can’t sit her in a corner and instruct her not to move for the whole of the day. That’d be ridiculous, cruel, utterly SO not OK. Plus, she wouldn’t take much notice anyway…she’d be off…the intrepid explorer.
The TV is never used as a baby sitter at Broccoli HQ – she has little interest in it. So, when she’s with me, she’s with me pretty much constantly…even during trips to the loo. Sorry, TMI there, huh?
But what we can ALL do (for all of our children…or for other people’s children) is be VIGILANT. PRE-EMPT as best we can what potential dangers lie ahead. ACT immediately when things are looking unsafe. RISK assess and put measures in place to minimise that risk. INFORM people of expectations. FOCUS!. AVOID distractions.
Nothing’s fool proof, obviously.
Our kids WILL undoubtedly get bumps from time to time.
But IF they’re explained fully. IF everything’s been done to try and prevent whatever’s happened, special needs mama’s (like me) and daddies too, won’t get cross. We’ll try and understand. We won’t have to expound our wrath and jump up and down and look and act all grumpy…we have other, much more important, things to do with our precious time.
So, Baby is not going in the corner. EVER! She’s not going to be restrained or have her wings clipped. She’s going to have the freedom to continue to explore the world and learn and be happy and safe, but probably still get a bump or two every now and again.
But she WILL be supervised and whoever is looking after her WILL be vigilant.
I’ll make sure of it.
So my lovelies, that’s all for this post.
I’ve just given myself a big pat on the back for not ranting. Well, I DID rant initially…and then edited and deleted…quite a lot actually.
Cathartic exercise over. For now, at least!
AND……….breathe, Annie, breathe……..cool and calm, cool and calm *exhales air in the style of a crossed legged yoga guru*
Thanks for stopping by.
Until next time
p.s. Please look out for the next post coming soon…we’ll be celebrating Hannah’s 6th birthday!
This post is dedicated to Patrick…of course!