“Yes, Mi Lud. Guilty as charged.
I have come to the conclusion that I am, unquestionably, THAT woman…or one of them, at least. Lock me up and throw away the key!” *throws head back and laughs in a slightly unhinged manner*
Annie is escorted out of the room…the court gasps…and then there is silence.
A pin can be heard dropping somewhere. Heavy doors clunk and a large rusty old key turns.
Everyone in the room hastily grabs their coat, goes home for their tea and watches Coronation Street and Annie is completely forgotten about, forever.
Fear not, I’m just being silly – as is often the case on here! (Well, let’s face it, in our world, life can get a bit too serious and stressful sometimes, so it’s good to let off some steam, don’t you think?)
But I think I really DO have a reputation as being one of ‘those’ women…and there are quite a few of us about.
I’ve been called many things over the years – some names which I can’t POSSIBLY share with you on here – this is a family blog, after all! Ah well, never mind *shrugs shoulders in indifference*
But being one of ‘those’ or ‘that’ has (mostly) only come about since Hannah’s birth.
…and I think maybe this’ll resonate with some other Special Needs Mamas and Daddies too as occasionally we might need to make our grievances known and that might ‘get peoples backs up’. (For our friends across the water, “Hello!” *waves enthusiastically* that means it annoys them).
We could grump about all kinds of things, us lot: Delayed (or non-existent!) services and equipment that our children need and aren’t receiving, services our children are receiving but fall short of the mark, professionals who aren’t doing what they’re supposed to do, professionals who are doing what they’re supposed to do but are doing it wrong, professionals who think they’re God. Oh, the list is absolutely endless….and frustrating too!
I make no bones about stating that caring for a child with additional needs is hard and sometimes things happen where we need to express our angst/disappointment/frustration or whatever, because we’re often our childrens’ only voice. We want to protect them and we want the best for them. We have to be a lot of things and we juggle a lot of plates. We have to be resilient and patient and creative. We have to (and want to be) mummy (and daddy – let’s still not forget the daddies) but equally, we have to be carers, therapists, secretary’s, chauffeurs, nurses and a WHOLE host of other roles 24/7, 365 days a year.
…and, crucially, we’re often THE experts in our children’s lives.
But, sadly, we don’t always feel heard.
As parent/carers, we have a lot to manage and, as much as we might like to, we can’t always placate everyone by skipping about, smiling and pretending everything’s ok. Because sometimes it’s not and occasionally it’s MASSIVELY, catastrophically not! So we have choices:
(a) Carry on skipping around and smiling, pretending everything’s ok and remaining on everyone’s ‘good books’ and have people thinking we’re wonderful because we don’t make waves. But by doing so, are we risking our children not getting what they need?
(b) Do something about it – express our views, feelings, concerns and perhaps, maybe along the way, get on someone’s nerves because – for whatever reason – they may not like what you’ve said…and then you risk being labelled as ‘That Woman’ (or ‘That Man’ – see? still not ignoring the daddies here) and then the reputation sticks and word travels really, really fast!
(c) I’m sure there are many other choices, but I’ll leave c, d, e, etc blank
But whilst I may feel the need to bite my tongue in other aspects of my life, when it comes to Hannah, I’ll choose (b) any day of the week!
Plus, I don’t do skipping anymore – I have a dodgy pelvis *sigh*
The wonderful and inspirational Maya Angelou once said “Ask for what you want and be prepared to get it” – and us parent carers often have tenacity to be prepared to get what our child needs in bucket loads. But there’s a skill to asking, or indeed, airing your views…or, in fact, complaining.
We all need to remember, that even if we’re really, REALLY vein pumpingly cross, most people (but not all!) are probably in their chosen profession because they’re committed and interested and genuinely want to help or make a change.
We need to remember that professionals are also people too…and they have feelings and their own life experiences, responsibilities and stresses too. Yeah, fancy that eh?
We need to remember that professionals can make mistakes or judge people incorrectly or make assumptions or simply just don’t know what to do – just like we do.
…and they may often have their hands MASSIVELY tied as a result of budget constraints. They might also be frustrated with systems and red tape and bureaucratic nonsense – just like we are.
So, when you have a grump (complaint) or issue, it’s highly unlikely that by barging into someone’s office and raging and getting all pointy fingered or screaming down the phone…and maybe even getting a bit personal about, say, wearing really dreadful clothes or the state of their hair or whatever…is going to get you what your child needs or effect any change, is it?
Nope. That’s not going to get you anywhere.
No-one particularly likes to listen to a shouty person.
I certainly don’t!
As Hannah’s mummy I think it’s vital to have open and effective communication with all kinds of people so that she gets the best possible support and despite sometimes having to ask for stuff or air my views, my intention has never been to offend or upset someone. But I’m pretty sure I have!
Asserting your wishes or views and expressing your feelings can often be done in a productive way. Rather than looking all aggressive and irate when you’re speaking with someone, lower your voice. People have to listen more carefully then. It doesn’t mean your words won’t have the same effect as being all loud and shouty-like, it’s just nice to speak to people ‘normally’ (whatever normal is, that is). Your tone in an email is also important – you can still assert yourself and make your feelings known in a nice way.
People may not like you for speaking up – they may even roll their eyes just at the thought of you or nudge and whisper to their colleagues “THAT woman’s here” on your arrival at their office – but your mission probably isn’t to be liked anyway, most importantly it’s to advocate for your child – but they’ll hopefully respect that you’ve approached them, because if they didn’t know about something, then they can’t make changes. They’re not psychic!
If other people take the huff (for our friends across the world, Hello again! *waves enthusiastically* – that means takes offence) then, at some point, they’ll get over it. And if they don’t…well…that’s just a bit tough. That’s their problem, their agenda, not yours.
I’m sure many of us probably don’t view our ‘label’ as some kind of badge of honour. I certainly don’t wear mine with pride! And if I remain ‘That woman’ who airs her views, then so be it. I can SO live with that. But what I AM immensely proud of is my commitment to making Hannah’s life the best one I can…and I’m especially proud of Hannah, her zest for life and how she manages to get through it.
She’s a star!
Some facts and figures…
…and a bit of a moan…
In 2014, there were around 64.51 million people known to be living in the UK. I know it’s gone up a bit since then, but I don’t have the current stats…so please bear with me.
In their Policy Briefing, Carersuk.org statistics that same year stated that of this population, 6.5 million people were classed as carers. 58% were female and 42% were male…and there will be 9 million carers in the UK by 2037.
People caring for disabled children under 18 years old accounted for 8% of these carers and 5% were caring for an adult child.
The unpaid care provided by the nations carers was worth an estimated £119 billion per year – considerably more than total spending on the NHS (ooh, you don’t say!)
Despite the fact that the UK is the world’s 6th largest economy many (MANY!) disabled children live in poverty and low income households. In 2011 the Children’s Society released a report which suggested that this was 4 in every 10 disabled children.
…but whilst George, age 11 (fictional, but with the potential to be true) has to sleep on a mattress on the floor in his parents’ bedroom and do without a specialist bed that meets his needs and keeps him safe and comfortable in the night and 4 year old Molly (again, fictional) has to forego medication that’ll keep her alive or is refused life changing surgery abroad because it’s deemed ‘too expensive’, it seems (according to The World Military Balance 2016 – International Institute for Strategic Studies) the UK can scrabble about in their briefcases, ‘copper up’ and find the $56.2 billion in UK tax payers money, just to ‘defend’ our country.
(Apologies for getting a bit political there and I don’t wish to stimulate any comments on UK expenditure on our blog, but I really felt the need to mention it and have a moan given that our kids; our beautiful, precious kids, are sometimes denied the things they so desperately need…and suffer as a consequence)
So, I’d better stop there before I get on my high horse again, hadn’t I? That’s all for now my lovelies.
Thanks, as always, for stopping by.
Until next time
…erm…I mean, Annie xoxo
This post is dedicated to all the carers out there; wherever you are in the world and no matter who you’re caring for. Don’t ever let anyone try and underestimate or belittle what you do.
You are precious and life would be very different without you! ❤
(Graphic courtesy of the brilliant photofunia.com)