What is success?

If you follow us on Facebook, you may’ve seen Hannah, sat in front of the TV, watching the World Athletics Championship recently.  It didn’t last too long (her watching the TV, that is.  Not the championship!), I think she lasted for half of the ladies 400m.  But hey, she watched the telly…something which she’s done very little of previously…yay!

…Oh, AND, she also watched portions of In The Night Garden AND Something Special on TWO.  SEPARATE.  OCCASIONSl!! *grins and raises eyebrow in TOTALLY bragging manner*

 

Athletics

Watching the athletics…whilst sat on her toy box (I have no idea why as her chair is RIGHT next to her)

 

Anyway, if you also watched it – the athletics –  you may’ve seen something featured at the end of the games…which got me thinking about Hannah and success.

 

(Oh cripes, she’s thinking! Put the kettle on Derek, it’s going to be another ramble!)

 

It was actually a piece about success; how we measure it and what value we place on it.

It’s all very subjective, isn’t it, success?

This piece explored whether success could be measured by the effort of the athletes – the victorious and the vulnerable – or the beautiful uncertainty of sport or even the joy of the spectators.  Or was it a culmination of everything?

There wasn’t a conclusion that I can remember or managed to hear, as Hannah was bashing (and seemingly trying to kill) her half deflated helium balloon at the time, so it got a bit noisy at Broccoli HQ!  Like I said, success is subjectively measured; so basically, people perceive success in different ways.

There may be a family down the road from you, who live in a big house, have a couple of brand new cars on the drive, go on holiday often, buy the latest ‘must have’ gadgets…and you may think they’re successful.  Behind closed doors, however, the occupants may be living financially from hand to mouth because of their extortionate mortgage; have loans, credit and store card limits up to the max…and those cars?…they’re not theirs, they belong to a company.

Are they successful?

Whereas, the other family down the road, own a modest house that looks a bit tired, they don’t own a new car, don’t have anything on credit, their kids don’t have the latest gadgets and they don’t go on fancy holidays….but their kids feel loved and they’re all happy.

Are they successful?

Some people mark their success by their careers (but what happens when that work isn’t there or when the company no longer requires their services?…would they feel less of a success then?)

…Or there could be a family on a reality TV show that you consider successful.

…Or it could be someone in the business world who’s made a fortune, or someone in medicine, or politics, or a musician or philanthropist, or an artist or whoever.

It’s all down to subjectivity again.

 

I guess my view on success has changed significantly since Hannah came along.

I consider Hannah watching the telly this last week a HUGE success, whereas, someone else may roll their eyes and consider this an utterly stupid remark.

Face, bothered?

If things don’t change radically over the next few years, Hannah might not have a career, a company car, a mortgage, buy those on-trend gadgets of her own volition or have the capacity to apply for a loan, store or credit card.

Am I fazed by this, though?

AM I HELL!!!

Because that stuff I just mentioned is, quite literally, just ‘stuff’.  It’s what we’re expected/conditioned into thinking comes of success or what we have to do or acquire to have ‘status’ within the hierarchy of society.

What a load of sh…….. *coughs*, sorry!

Shoes.  I was going to say shoes.  Honest!

I’m sure over many thousands of years, people have pondered and debated over the definition of success.  So I approached The Oracle for the answer (okay, I googled it!) to see what other people thought of success:

Acclaimed Author, Maya Angelou said “Success is liking yourself, liking what you do and liking how you do it”

British Politician, Winston Churchill said “Success is going from failure to failure without losing enthusiasm”

Spiritual Teacher, Deepak Chopra is quoted as saying “Success in life could be defined as the continued expansion of happiness and the progressive realisation of worthy goals”

Inventor, Thomas Edison said “Success is 1% inspiration, 99% perspiration”.

 

…No mention of “stuff” there, really.  Sounds okay to me.  How about you?

 

So I got to thinking…

 

(Derek, DEREK…forget the tea.  Make it a brandy…she’s thinking!!!)

 

…What do I consider is success?   Here’s just a few examples (I’m pretty positive I could come up with a MASSIVE list, but you’d just get fed up with me)…but bear in mind those successes are just my opinion, but may be based on a number of individuals that spring to mind…including Hannah:

 

  • Being able to get up, open the curtains and face the day ahead…even when you feel you can’t
  • Having the strength to disregard or walk away from control, expectation, judgement, nonsense or provocation
  • Feeling completely comfortable in your own skin
  • Being able to lift your head up independently, despite the fact that your brain and/or your body constantly want to fight against that.
  • Being able to stand up or hold something
  • Being able to breathe independently or eat or move your hand
  • Being able to smile
  • …and even when you aren’t physically able to smile, because your physiology won’t allow, smiling in another way and being able to uplift the WHOLE room and make everyone else smile.
  • Regaining your mobility, speech and independence through sheer determination and damned hard work
  • Inspiring others
  • Thinking outside the box…in fact, no, scratch that. Chucking that sodding box (or boxes) away!
  • Eating a pasty from the Chough Bakery in Padstow…kidding!…just checking to see if you’re still reading, that’s all!!…I could just eat one though…yum! 🙂
  • Being able to navigate a busy supermarket or other environment
  • Trying something new
  • Making something work
  • Doing your best
  • Being able to look at something or someone
  • Being able to concentrate or sit, even if it’s for a few minutes
  • Loving and embracing life
  • ..or maybe, simply by being in your presence, giving someone else SO much joy.

 

Again, that’s all subjective (I’m sounding like a broken record here.  Soz!) Because an average person may not even give the above any thought whatsoever for themselves or their loved ones….ever…unless something happens when those things they can do are taken away from them, that is.

Prior to Hannah’s birth, I could never have imagined how I’d react when Hannah did something/anything for the first time; how I’d appreciate it, how I’d baffle or bore people about it (the ‘don’t/won’t understanders’), how sometimes I’d cry tears of joy, how I’d be taken by surprise, how liberating it would feel, how I’d ache to relive that moment and never EVER get bored of it.  Those achievements, those HUGE successes, those triumphs through adversity take on a WHOLE new dimension….and enrich your life immeasurably.

…and just because Hannah’s achieved something once, I’ve never EVER taken for granted that it’ll happen again.  Because it may not.  That’s not pessimism, btw.  That’s FACT!

…but I’ll never say never!

 

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

Thanks, as always, for stopping by…

Until next time

Annie xoxo

Posted in Miscellaneous, Syndromes/Special Needs | Tagged , , , , , , , , , , , , , | 2 Comments

SEND Holidays™

 

Air Broccoli

Credit: Photofunia

 

Oh, exciting times, my people!

Yes, as SEND Bingo™ was such a HUGE success, and as it’s currently the school summer break, we’re expanding into the tourism business.

Yay!

(Btw, just another heads up here: please don’t take any bit of this post in any way seriously, okay? – although Special Parents may well recognise just a soupcon of sarcasm/reference to aspects of our lives/experiences etc here. Possibly)

Oh, and if you didn’t know already, SEND is an acronym for Special Educational Needs and Disability…not the Village in Guildford…just so we’re clear.

 

So, welcome to SEND Holidays™ – your all-inclusive, unforgettable trip of a lifetime!

Our motto is: Inclusion with delusion.  Catchy, eh?

We bet it’s been AGES since you’ve had a break and you’ve been saving up all year for this (actually, what are we talking about?  We hear you lot are loaded; All those free – Three! – nappies per day; all those benefits!).  Anyway, there’s no need to think of anything, we’ve got it ALL covered.

…you’ll never want to go anywhere again!

Ha ha ha!

First off, we need to get you to your destination, so we’ve got you a taxi…

DING DONG

(that’s your doorbell, btw, not me ogling being a good parent and sitting with my child whilst she watches Tom Hardy on CBeebies Story Time *coughs*…btw, she won’t watch telly much *sigh*).

What?  You can’t fit the wheelchair in?  Can’t you leave it at home? You’re only going for a week!  No?  We’ve not even set off and you’re getting all ‘needy’.

Right, you’re at the airport.  Let’s get you through passport control and onto the Departure Gate.  Come on, chop chop!

(I’ve no idea where we’re going…choose your own destination)

Whilst you’re on your way to the Gate, we are confident you will delight in our Duty Free Department…that you’ll need to squeeze through, because there’s no other way to get to the Gate; All those people! That noise! Those smells! All those shiny, shiny things to navigate around! All that sensory overload! Consumerism at its finest! YOU NEED ALL THAT STUFF. Buy it…BUY IT NOW!  Oi, kid, don’t touch the…ah, too late, never mind. It’ll mop up.

Btw, if you need one of those ‘special’ toilet things, you’ll have to go to Gate 128574. We think it’s still open.  Possibly.  Hurry, we’re boarding soon!

BING BONG: “Ladies and Gentlemen, Flight 666 will be boarding in 5 minutes.  Please make your way to Gate 2”

Run…RUN!!!!!

So, you need seats together as “a family”.  I see.  Nope, not happening.  You got preferential treatment to board first, what more do you want? You’ll get a week together when you get there! *tuts*

…and don’t be asking for one of those ‘special’ toilets on here either.  Our toilets are special enough.  You should’ve gone before we set off.  A nappy change?  In here? Ha ha ha, I don’t think so!

“Ladies and Gentlemen, this is your Captain speaking.  Welcome to Air Broccoli.  You’ll be pleased to know your destination is currently experiencing a heatwave and today is a glorious 45 degrees.  You Brits aren’t used to the sun, so fear not, there’ll probably be plenty to do indoors until it passes.  We’ll shortly be taxiing onto the runway and will be flying at 40,000 feet so please fasten your seatbelts.  Yes, we know your kid doesn’t like being ‘restrained’ and no, we don’t supply those ‘special’ seats, but them’s the rules.  Oh and make sure the kids sit still and keep the noise down…we don’t want you disturbing our other passengers, do we?”

 

It’s been a long day, hasn’t it?.  You’ve left home, travelled to the airport, squeezed through Duty Free, got through security after being patted down and scanned a million times – after all, you lot look a bit dodgy…the tubes in that little wheelchair we tipped your kid out of could’ve been stuffed with anything! PLUS you lied when you said you had no liquids…you had that quarter bottle of hand sanitiser you’d forgotten about in the bottom of your changing bag! #truestory #sorrysecuritylady; waited 2 hours to board and now you’re here…at your sweltering destination (after waiting in the sun for the coach to arrive for 45 minutes)

Phew!

Right…

Let the holidays begin!

Here’s your hotel…mind the step(s)…

Here at SEND Holidays™ we’ve recruited the crème de la crème of staff, who’re highly knowledgeable in all things disabilitied-like and we’re equipped to meet your every need.

Ah, see over there?…there’s our Receptionist, Rhianna, now.  Not too interested in her job is our Rhianna, so don’t expect a warm welcome…at least you’ll get your door key and she’ll point you to the stairs with a grunt.  Your room is situated on the 3rd floor. The lift isn’t working though.  Don’t worry, she’ll keep one eye on your bags (the other will probably be on date-a-fireman.com) whilst you traipse up and down.    Apparently you lot don’t mind a bit of exercise.  It’ll do you good!  What?  You booked for ground floor?  Needy, needy, needy!  We can see you lot are going to be trouble.  Okay, give us a couple of hours and we’ll sort it.

And over there is our lovely Tour Guide, Tina.  She’ll be on hand throughout your stay if there are any problems or questions.  Well, actually, once she’s subjected you to your 2 hour chat about the local attractions and the obligatory medieval banquet at £75.00 pp (SEND rates) or £15.50 (‘normal’ rates), you won’t see her for dust.  But hey, give Head Office a call in the UK and they’ll try and track her down just before you leave.  You probably won’t need Tina.  You lot are a pretty resourceful bunch.  We bet you’ve already googled the local doctors, chemists and hospitals within a 50 mile radius, anyway!

Naturally, to ensure you have the best possible holiday, we’ve consulted with several experts:  we’ve drafted in Disco Dave (you know, the ASD expert from SEND Bingo©, as his neighbours’ cousin’s best friend has a granddaughter diagnosed with autism) so Dave’s our “Go To” guy on anything to do with ASD, obviously!  He does a cracking disco – Birdy Song, Agadoo, the lot.

And there’s our Krazy Karl (great name, huh?) our resident comedian extraordinaire (he nearly applied for Britains Got Talent once!).  His sisters boyfriends nan’s got arthritis, so he’s our expert on anything to do with physical disability…naturally!  Oh, he’s HILARIOUS is our Karl! No need to get all sensitive during his evening show…he makes jokes about everyone. He’s harmless, really.  He’s looking forward to wearing his shorts again…he gets his tag off next week.

Our head chef, Charlie, used to microwave food up in a pub, so he’s our expert resident dietician.  If you’ve got dietary needs, he’s the man – although we don’t do that gluten free/allergy rubbish or puree anything and we certainly won’t store any of that ‘special’ milk for tube feeds…we have our health and safety to think of!  Just keep it in your suitcase, we don’t want you encouraging the cockroaches.  It’ll be fine.  Anyway, Charlie doesn’t believe in funny diets, he says it’s just a fad and everyone should just eat what they’re given and have done with it.  So, he and his team have devised an extensive menu and will treat you to an array of culinary delights:  chips and beans, chips and pizza, chips and egg, chips and sausage, chips and gravy…and his signature dish…Beef Vindaloo out of a tin (half rice, half chips).  That man deserves a Michelin star!

Our restaurant gets a bit busy, so we’d prefer it if you booked for, say, 4pm (we’d like you out before 5)  The likes of you probably won’t want to eat near other people though anyway, surely.  So we’ll seat you in the corner, out of the way, near the toilets.  You’re welcome!…Just don’t make a mess.

We hope you like your accommodation.  We’ve catered for your every need – bed, window, 3ft bathroom with toilet and bath.  What? What’s a hoist? No, we don’t do special beds…our beds are special enough.  A changing bed in the bathroom?  Oh no, we don’t put beds in a bathroom.  Mind you, we do have an old paste board somewhere that the decorator left.  Will that do? You lot are quite resourceful bunch anyway, we’re sure you can cobble something together.

So, Special Mums and Dads, we bet it’s been ages since you’ve had 5 minutes to yourself.  So why not pop your little poppets in our Kidz Klub for a few hours whilst you grab a coctail? Our rates are very reasonable – £86.50 SEND rates or £7.50 ‘normal’ rates per half day.  Krazy Karl and his team will entertain the kids whilst you have a rest.  Oh, sorry, no, we can’t take that one…health and safety/not enough staff…and the risk assessments alone would be a nightmare!.  No, we’ll take that one, not the other one.

What?  The beach is too crowded?  You can’t get the wheelchair onto the sand?  Don’t you know how much those sand wheelchairs cost?  Well, in that case, you’d be better off round the pool for a bit.  Whilst there, you’ll undoubtedly come across our lovely repeat guests:  Bernard the retired butcher from Birmingham and his wife Barbara.  A portly couple who like a tipple or twelve.  Bernard loves his ‘all day breakfast’…all day! And prides himself at how much perspiration he can produce whilst wolfing down our world renowned Beef Vindaloo (half rice, half chips) – a true man indeed!  Always eager to  talk at chat with new people are these two, oh and Bernard is a comedian…”We love children.  Couldn’t eat a whole one though.  Ha ha, eh, Babs?”.  Barbara didn’t want children – it would’ve ruined her weekend candlelight dinner parties, however, she’s an expert in everything child related as she did the books for six months at a children’s nursery in 1978.  Bernard is always willing to offer Barbara’s services….and if you need to toilet train your 6 year old disabled daughter, Barbara’s the one to do it.  “Give her to Barbara” he guffaws, “she’ll have her trained in a week, ha ha ha”. (#actualtruecomment #ikidyounot) – Bernard really does possess a subtle knack of pointing out your epic parenting failures, doesn’t he?

…he’s a legend!

So, you’re by the pool – yay!  You need a hoist to get in and out of the water?  Seriously?  *tuts*  No, no, no!  That’d spoil the aesthetics!

Oh and don’t get all sensitive when you’re out and about…the locals aren’t really used to…erm…well, you know…’them’.  It’s only natural they’ll stare.

Right, I’m sure you have everything you need, so we’ll leave you to it.

 

Happy Holiday!

 

So, what d’ya think?  Sounds fun eh? Make sure you book your next holiday with SEND Holidays™.

Prices for a weeks accommodation start from £7894.95 per person.  Naturally, if it didn’t have SEND in the title, it’d only cost you £345.00.

Oh, and given you lot can be a bit sickly, we’d highly recommend you lot take out our prize winning holiday insurance.  Just visit our two companies:

www.wewonttouchyouwithabargepole.com

or

www.wewilltouchyouwithabargepolebutitwillcostyouafortune.com

(Gentle reminder again…please don’t take any teensy bit of this post seriously.  At all.  Ever.  This is all fictitious)

 

That’s all for now my lovelies,

Thanks, as always, for stopping by.

Until next time

Annie xoxo

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Surgery

Birthday 1.jpg

And so my lovelies, Hannah will be having her dental surgery soon.

We’ve had to wait since November 2016 for Hannah to have this done and, whilst I know she needs it and has sometimes been in a great deal of pain, I’m feeling pretty anxious right now.

…the fear of the unknown always throws me!

A few well-meaning people have said “oh, she’ll be fine”…or worse… “I’m SURE she’ll be fine and it’s amazing what they can do these days” – with the aim (undoubtedly) to reassure me that she WILL be fine.  And that’s really nice.  But, if I’m perfectly honest, this hasn’t helped.  It hasn’t helped one bit.  Because:

(a)           How DO they ACTUALLY know “she’ll be fine”?

(b)           I was told this last time she was due to have surgery by several people including medical professionals…and she wasn’t fine.  She needed resuscitation.  I don’t consider that being “fine”, do you?

(c)            Even though, when asked, I’ve tried hard to just stay factual about it, rather than all doom-and-gloom-like or minus the emotion that’s bubbling inside, it makes me feel like I’m worrying for nothing/being a drama queen – hopefully I AM worrying for nothing and I couldn’t give a monkeys if someone thinks I’m a drama queen! But the “oh, she’ll be fine” seems to be accompanied by an invisible dismissive wave of the hand; completely negating my angst as her mummy, what I know of Hannah’s needs and what Hannah’s experienced previously.  

My response to the “Oh, she’ll be fine”?…

Well, mostly I’ve replied with “I hope so” (followed by a somewhat forced smile) as I wouldn’t want to offend those who mean well. But, even I, knowing Hannah better than ANYONE on this planet, don’t have the answer to this one.

You see, Hannah – because of the associated stuff linked to her syndrome e.g. her restricted airways and her heart condition, is deemed “high risk” for surgery.  We wouldn’t have been asked to attend COUNTLESS appointments at the hospital in the build up to this (subsequently denying us a going on a MUCH needed holiday this year!), and Hannah subjected a load of tests and examinations if this was something easy/simple/run of the mill/me being a drama queen.  Specialist team/other consultants wouldn’t be on hand, just in case.   

…I don’t think the money people in their ivory towers at the NHS would’ve been too chuffed if all that stuff was done just for a laugh, do you?

Routine surgery ordinarily comes with risks.  Routine surgery for children with significant additional needs – like Hannah – requires a whole raft of professionals coming together and doing their stuff to the best of their ability.  And all we can do right now is put our faith in these people and hand over our precious girl to these virtual strangers…which will be unquestionably hard.  REALLY hard.  Especially after our experiences post surgery the last time around. 

She’s celebrated her birthday this week and it was SO lovely to see her having fun at her party.  In fact, all week she’s had fun and seemed to be in really good health.  Thankfully!  There’ve been times when I’ve just watched her playing on her own recently and it’s caught my breath….so happy, so innocent, so unaware of what’s to happen (thankfully), SO loved…and if I could go through this rather than her, I’d do it in a heartbeat.  And I guess I’m bitter that, despite NEVER giving Hannah sweets (candy), giving her the best diet that I possibly can and brushing her teeth twice daily, she’s having problems.  But it’s all down to her syndrome – cavities, overcrowding, who knows what else the surgeon will find. 

But hey, there’s no point dwelling on it.  Such is life, I guess. 

Maybe, one day, someone you know whose child is having surgery may appreciate a text to say “I’m thinking of you” or “I hope all goes well” or whatever.  Texts take just seconds out of your busy day, but may make a difference…just don’t say “good luck” (we don’t need luck!) or “call me if you need anything” (us special parents probably won’t ask for help…we’re a bit stubborn like that…well, I am anyway).  If you’re feeling REALLY helpful, you could offer practical stuff like, say, food (hospital food is generally vile…in my opinion, that is…thank GOD there’s an M&S around the corner!) or parents may be too busy tending to a child who’s returned home rather than cooking something nutritious for themselves.  Just think about doing something…I’m sure anything would be appreciated and, if the tables were ever turned, you’d probably appreciate some help too, don’t you think?   

(n.b. For the handful of close friends we have…this isn’t a hint…just so we’re clear.  You know me better than that! *blows kisses*…although feel free to bring crisps…or wine…or chocolate…or cake…or a pasty from the Chough Bakery in Padstow…or…)

 

So, my people, I need you to do Hannah a favour, please…

If you have a faith – no matter what religion you worship – please say a prayer for her…or a few.  If you don’t, then please keep her in your thoughts; send her TONS of positive vibes; cross fingers, toes, eyes, legs, whatever.

I’ll keep you posted as soon as I can. 

Annie xoxo

Posted in Miscellaneous, Syndromes/Special Needs | Tagged , , , , , , , , , , , , | 4 Comments

SENDBingo™

We love a good book at Broccoli HQ, although Hannah much prefers chewing hers *sigh*. Anyway, we paid a trip to the bookshop recently and I chose a book called Dummy by Matt Coyne.

 
Matt writes about parenting from a dads perspective and he’s devised a game called Profanity Bingo – I won’t spoil it for you (just in case you ever do buy the book), but it’s a corker! And, as I was reading in bed the other night (attempting to stifle my lol’s so I didn’t disturb Hannah’s daddy – aforementioned stifles subsequently turned into snorts, you know, like they do…or is that just me?) I had a thought; we parents of children with additional needs could have our own bingo game.

 
…SENDBingo™!

 
…A Bingo game just for parents with children who have Special Educational Needs and Disability (SEND)

 
#genius!

 
But minus the profanity (apologies! sorry to be such a party pooper!).

 
I’ve never been to a bingo hall (I know! shocking, eh?) even though I think I’d quite like to go one day when I have time/energy. I’ve no idea of the rules either (I can almost hear lavender haired ladies all across our glorious land tutting and rolling their eyes at this disclosure…sorry! *cowers*). Nevertheless, in true Special Mama styl-ee I have done what I am particularly good at…winging it (don’t most parents do that anyway?)…and made it all up.

 
Just a heads up, here: please don’t take any bit of this post in any way seriously (although Special Parent’s may well recognise just a soupcon of sarcasm/reference to aspects of our lives/experiences etc here. Possibly)

 
Let’s go, shall we?…

 

 

Now, in order to ensure us SEND (Special Educational Needs and Disability) parents feel right at home, our SENDBingo™ halls will be:

 

 

• Absolutely miles away from your home – probably just like many of the appointments you need to take your kid to.

 
• All disabled parking spaces will be taken up by those without a permit, or our staff, or people ‘just nipping in there for a minute’. You’ll have to park down the road. It’s only about a third of a mile away. Just put your hood up if it’s raining and bring a torch if it’s dark. You lot are quite a resourceful bunch, anyway.  Don’t be soft.  You’ll be fine.

 
• Of course, all of our SENDBingo™ establishments opening times are designed to suit the requirements of our staff, NOT our clientele.  You may be paying our wages, however that doesn’t mean the likes of you can dictate to US! *tuts*

 
• Our reception staff may treat you with disdain.  You’ll get over it.

 
• There’ll be no ramps and suchlike.  Our SEND Bingo Halls will be old and a bit crumbly, so all the regs and legislation around access and stuff won’t really apply to us.  You’ll need to go up a couple of (seven) steps, then squeeze that wheelchair you’re pushing through that average size doorway and round a 90 degree bend.  Oh, careful! Mind your knuckles…oh…too late!.  Just give them a bit of a wipe and put a plaster on when you get home.  We won’t take kindly to you bleeding on the carpet.

 
• Don’t even think about a proper disabled loo or changing space.  That’s just silly and, quite frankly, a bit cheeky of you to ask! *rolls eyes* No, our perfectly apt single unisex toilet cubicle will be upstairs, down a dim pokey hallway.  Just don’t turn around whilst you’re in there or you’ll catch your bum on the industrial size (empty) toilet roll holder.  Don’t worry, we’ll make sure the floor’s nice and wet too.

 
• Our lighting and acoustics at SENDBingo™ have been carefully designed to give you THE ultimate experience of sensory overload.  We consulted with our resident DJ – Disco Dave – because his neighbours’ cousin’s best friend has a granddaughter diagnosed with autism…so naturally, Dave’s the ‘Go to’ guy about anything to do with ASD.  Obviously!

 
• Oh, and there’s no mobile phones allowed here.  We don’t want someone frantically phoning you in an emergency. Ha ha ha!

 

 

 

So, you’re in the Bingo Hall.  OK, settle down now, eye’s down…aaaaand we’re off…

 
But, hang on…

 
You won’t be hearing “Two fat ladies, rise and shine or even dancing queen” here.

 
Oh no!

 
Here at SENDBingo™ we’ve an alternative spin on proceedings. There’ll be no numbers on our cards – please refer to ours at SENDBingo© (pictured).  There’ll be no bonus points for the stares either…you get far too many of those anyway!

 

bingo

Our hall will be filled with (mostly) well-meaning individuals and maybe even people you know. You will be forced to engage in discourse with these lot. Well, actually, I really mean, you’ll be talked ‘at’.

 
You see, these people are THE experts in YOUR life.  They know FAR more about your child, their needs and diagnosis than you ever will.  You’ll be given advice on how best to ‘cure’ your child or care for or stimulate them (and woe betide if you don’t take heed…you bad parent, you!). You’ll feel like a failure, patronised, pitied, scoffed at, looked down upon, insulted, be advised and questioned (i.e. interrogated purely out of nosiness, regardless of how painful that may be for you) and made to repeat your child’s condition over and over and over again until their eyes glaze over in that ‘I’ve-asked-you-but-I’m-really-not-remotely-interested-I’m-just-being-nosy-or-polite-or-whatever’ fashion.

 
Okay guys, Bingo dabbers at the ready. Start dabbing away when you hear or experience any of those things on your SENDBingo™ card. Let’s go…

 

 

“HOUSE!”

 

 

Oooh! Well done you! You’ve won a prize!

 
Ah, now, hang on a minute.

 
We appreciate you’re probably on a low income and you’d much prefer financial remuneration, however, we don’t do cash here.

 
In fact, we don’t even stock any prizes.

 
What we require you to do now is put in writing what you need…we’ll then have a think about whether you can have it or not (again, just to make you feel right at home).  You’ll need to respond within 5 working days of winning.  What? You’ve got a week’s worth of juggling hospital appointments, therapy, EHCP meetings, going to work and 3 nights of being up all night with a poorly child.

 
Ah, too bad.

 
You’ll need to try harder, really.  That just won’t do!

 
Still, if you can be bothered to make time to apply for one of our coveted prizes, you’ll have to wait a minimum of 6 months for us to consider your request whilst we sit around in an office shuffling papers, studying our computer screen (i.e. booking holidays/flicking through facebook) and looking busy (and telling everyone how VERY busy we are). We’ll then respond and send you a 45 page document to complete – in order to ascertain whether you are actually a worthy winner (and not a fraudulent person…you lot are a bit dodgy. Apparently!). All sections must be completed in full in a timely manner. You will need to disclose EVERYTHING about your life. By everything, we mean EVERYTHING…your finances, what you had for breakfast a week last Thursday, the name of your cat. We won’t keep any of this confidential, we’re rather partial to a bit of tittle-tattle at SEND Bingo ™, so we’ll make sure everyone’s suitably misinformed of our interpretation of you and your life.  Oh, and if we don’t like the look of you, then we’ll just put your application in the bin.  End of!

 
Once we’ve considered you a worthy winner (and, yes, we expect you to be very grateful), we’ll ship it out to you. We’ll decide the delivery date. You’ll need to be at home to receive it.  We frown upon people going out gallivanting to appointments or ‘important’ meetings…you need to prioritise US, not anyone else. And don’t even think about not answering the door and having an afternoon snooze; you may’ve been up most nights playing nurse-maid recently, but that’s no excuse.

 
If you’re not in, we won’t leave a card to say we’ve been, we’ll expect you to get in touch with us. We’re FAR too busy to be chasing you around.

 
Them’s the rules!

 
So, there you go…SENDBingo™. Sounds fun eh?

 
Come along and join us!

 
(Annual Membership costs £1695.95 plus VAT – naturally, if it didn’t have SEND in the title, it’d only cost you £15.50 inc VAT on the high street.)

 

That’s all for now my lovelies.

 
Until next time…

 
Annie xoxo

 
Gentle reminder: As I mentioned earlier, none of this should be taken seriously…at all…ever.  This is all fictitious.

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Posted in Silly stuff | Tagged , , , , , , , , , , | 7 Comments

My Little Adventurer

Or otherwise entitled…

Hannah goes on an adventure WITHOUT ME (I KNOW, HOW RUDE!) and this is a post about what she got up to, with a bit of a preamble and some more waffle to accompany the photos from her mama. 

(That’s a long title, huh?)

or, otherwise entitled…

Kids with disabilities CAN

 

So, if you follow us on Facebook, you’ll probably know Hannah was given the opportunity to go away with school for a couple of nights to the Lake District.

Yay!

(n.b.  For our friends across the pond “Hi!” *waves enthusiastically*, the Lake District is a beautiful part of Great Britain…if you visit England, do think about stopping by there: it’s the place of William Wordsworth, Beatrix Potter, lots of Lakes – obviously!, John Ruskin – one of the great polymaths of the Victorian era, glorious little villages and…well…just loveliness…oh, and maybe a bit of rain…occasionally)

Anyway, although it was a relatively last minute invite, it was an EXTREMELY welcome one and, whilst I had to think just a little about letting my baby girl go (still hard for me to do…maybe always will be), I was completely confident she’d have a fantastic time and would be looked after.

When I excitedly mentioned it to someone, their response was “Well, she’ll have to get used to it one day” – which kind of put the mockers on (spoiled) things a bit *sigh*.  It would’ve been nicer if they’d have said “Wow! What an amazing opportunity!”, or, in fact, said nothing at all.  But no, sadly.  We can’t account for what comes out of other people’s mouths, can we?  I’ve heard this before and, tbh, people might as well say “Well, you’re knocking on a bit, you’re gonna kick the bucket sooner or later, so she might as well get used to being on her own now” – because that’s what’s meant, no matter how much you wrap it up and put a bow on it!  If Hannah didn’t have additional needs, I doubt people would have the gall to say this about a seven year old child…however, in our worlds, it just seems to happen…again and again…and again!  And people think it’s okay (as if we haven’t ever considered the future!!!!!!) but, guess what?…here’s a shocker for you…WE ACTUALLY HAVE AND IT’S NOT SOMETHING WE CAN FORGET ABOUT, CAN WE?

ARGHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Anyway, enough of my whingeing…

So, whilst the cat (Hannah) was away, the mice (i.e. Hannah’s daddy and I) made plans to go out for a meal (it never happened!) and have a rest (yup, also never happened!).  But the thought was there.  Instead, we did much needed bits and bats around Broccoli HQ and then I nipped to Marks and Sparks for something nice for our tea.  And then we flaked on the sofa watching telly (what a rock’n’roll lifestyle we lead, eh?).  But it was good, all the same.  But the time flew so quickly!  Isn’t that always the case though?

…I missed my girl though.  Whilst I welcomed the break to get a few things done, Broccoli HQ really wasn’t the same without her.

I could waffle on ad in finitum about what we did and didn’t get around to doing…but I’ll spare you that…you’re welcome.  This isn’t about us,  this is about Hannah’s adventure.  And anyone who thinks kids with disabilities can’t have adventures is, quite frankly, a bit of a schmuck and needs educating…as this post provides photographic evidence that children with disabilities CAN have fun, CAN have adventures, CAN do stuff that – let’s be honest here – many adults without disabilities haven’t even done or could do….or would even consider doing…OR have the guts to do!

Hannah went to stay at a registered charity called The Bendrigg Trust (Here’s the link: www.bendrigg.org.uk).  Bendrigg is based in Kendal (Cumbria, England) and specialises in residential activity courses for disabled and disadvantaged people of any age or ability.

So, my lovely people, without further ado, here’s what my kid got up to…and I’m EXTREMELY proud of her (actually, I’m always proud of her, but especially proud for doing this stuff, as you’d NEVER get me on a sodding zip wire…EVER!)

 

Day one

Arrived safely and enjoying the lovely view…

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In the yurt, looking happy and ready for a campfire…

away 1

About to go on the big tube slide…apologies for the big smiley face (on the right, obvs!) but I didn’t get people’s permission to share their photo on this blog…so, as I don’t want to upset anyone, whilst they do have very lovely heads, I’m covering their heads up, just to be on the safe side.

away 5

On the ropes course…

away 4

A bit of archery…OH. M. G!  HAVE YOU SEEN THE SIZE OF THAT BOW!…

away 3

Having a chill before bed in the sensory room…

away 2

 

Day 2

On the Zip Line…Dear sweet Jesus and all the blessed Saints!!! *crosses self in religious manner*

away 8

No idea what this is called…a-seat-on-ropes-that-swings-around-thingy…apparently Hannah LOVED it!…AND she’s holding on! (I’ve never seen her holding onto anything before.  EVER!)…

away 6

 

Day 3

Certificate time before going home…but not looking too impressed (probably at the prospect of going home.  Who knows?!)…

away 9

 

So, what do you think? Quite impressive for a seven year old child with significant additional needs, huh?

I think so.

That’s all for now my lovelies.

Thanks, as always, for stopping by.

Until next time…

Annie xoxo

This post is dedicated to our fabulous Del and all the other amazing staff at Hannah’s school who went too. I know this was FAR from a break for any of you, but thanks SO much for giving Hannah this opportunity and for your support…and all the fun!  I hope you managed to have a rest when you got home…and maybe some wine/gin/beer (delete as applicable) I think you deserved it! xx

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Posted in Miscellaneous, Syndromes/Special Needs | Tagged , , , , , , , , , , , , , | 2 Comments

Auntie Debs has a haircut

 

…and Hannah’s NOT impressed!

 

Hello you!

As I sit to write this post, my phone pings and up pops a photo of Hannah stood on a balcony in a beautiful part of Great Britain…the Lake District.

18921865_10213520390311286_5582625277652573421_n

My lovelies, if you’ve never visited that part of the world, you’re missing out.

Hannah’s going to be there for 2 nights with school and whilst this was a last minute invitation, it’s a much welcome one.

Hannah will undoubtedly have lots of fun and adventures with people she knows and likes…and I and her daddy will have the opportunity to do much needed bits and bats around Broccoli HQ…and, perhaps, have a much needed rest…oooh, and maybe have a few drinkies!

Mid-week!!!

I know!!!! *does happy dance*

Well, it’d be rude not to wouldn’t it? When the cat’s away and all that *winks*

So, I have a bit of time to have a chat with you…yay! Apologies I haven’t done so for quite some time, but as always, life just gets in the way, doesn’t it?

Right now, for lots of reasons, I feel the need to write something a little light hearted.  So I’m going to try and do just that and tell you about something that happened recently.

So, here goes…picture the scene…

 

“Ladies and Gentlemen of the jury, what is your verdict?”

“Guilty, your honour”

There are audible gasps of astonishment around the courtroom.. 

Little Judge Hannah – propped up on several cushions in order to see over her bench – grasps her wooden gavel firmly and slowly leans forward after straitening her short bench wig and red robes.  Over her half-moon glasses, she stares solemnly at the trembling defendant in the dock and the silence in the courtroom was deafening. 

“Madam” she bellows deeply “You are deemed guilty of committing a dreadful misdemeanour and, as such, in my summing up of this case, I have no reservations in delivering the following sentence:

Firstly, you are forbidden from entering any salon within a 50 mile radius of your home for the next 6 months.

In addition, you will be made to clip your hair away from your face at ALL times.

And finally, for the next month, you are prohibited from manducating broccoli of any type and in any form – be that soup, steamed, blanched, roasted, dressed, on the side or as a main.  Not even a miniscule floret must be devoured during this time. 

Think yourself lucky that you did not receive a sentence at Her Maj’s pleasure for your appalling actions.

You are VERY, VERY naughty.  Let THAT be a lesson to you!!”

Little Judge Hannah is lifted off her cushions by the court guard and swishes out of the room without a second glance, tutting.

 

Oh dear!

The lady in the (totally fictional, obviously) dock was Auntie Debs who is one of a number of wonderful ladies who look after Hannah a few hours a week whilst I have to go and do grown up stuff.

Having extremely limited support (understatement!) from elsewhere, I’d be absolutely lost without them as Hannah – because of her significant additional needs – requires one to one support at all times…and that’s not because I’m a fussy mummy (okay, *put’s hand up in surrender* I AM a fussy mummy).  But it’s not actually optional.  It’s a necessity in order to keep her safe.

Hannah loves being with them and has tons of fun…and I think the feeling’s relatively mutual.

…and she certainly keeps everyone on their toes, THAT’S for sure!

But a terrible (almost unforgivable) crime was committed by Auntie Debs the other day and Hannah was simply not impressed.

NOT.  ONE.  BIT.

Anyone who doesn’t really know Hannah would just assume she’s in her own little world most of the time and doesn’t take anything in, doesn’t know what’s going on.

What fools they are!

It may take quite some time to take stuff in, she may not give eye contact, she may not even acknowledge your existence, but if she’s not focussed on/engrossed in something else, she’ll notice things.

Oh yeah!  Make no mistake about that.

…and this particular ‘incident’ is a case in point.

So, as we approached the steps of the building to go and see Auntie Debs and the other staff, Hannah was in her usual, delightful (slightly wild/feral/bonkers) mood.  Her face said “I’m happy mummy”, her sing song noises suggested that life was good for Hannah.  Today was a good day.

However, not long after the door was opened for us and Auntie Debs greeted Hannah’s arrival, Hannah’s mood changed significantly; her sing song noises ceased immediately, she wouldn’t give eye contact and her hand came up to her face (as is often the case when she’s zoning out of a situation/needs to process what’s going on).  She recoiled from Auntie Debs who was subsequently shunned within seconds.  If Hannah could’ve spoken, I’d suggest this is what she would’ve said…

“Don’t come near me lady!  You might be wearing Aunty Debs’ clothes.  You might sound like Aunty Debs.  You might be standing where she often stands.  BUT YOU AIN’T MY AUNTY DEBS!  WHERE IS SHE?  WHAT HAVE YOU DONE WITH HER?  I.  WANT.  MY.  AUNTY.  DEBS.  BACK!!!!!!!!!! Someone call the Police…NOW!”

Oh dear.  Oh deary, deary me.  Eschewed by a tiny seven year old!

Initially, I couldn’t quite grasp why Hannah’s mood had changed so significantly.  This wasn’t typical behaviour for Hannah in a place where she’s accustomed and to someone she knows so well.

…and then we twigged why.  *imaginary lightbulb pops up in bubble overhead*

Auntie Debs had had her hair cut! *gasps in horror!*

Now I’m pretty sure she regularly gets her hair cut, but she’d now got a fringe.

How rude!

Actually, just for the record, it’s a very nice fringe; however, naturally, a fringe ordinarily partially covers your face, and Hannah was not amused – maybe this is something to do with her Autism…but I can’t be sure as she can’t tell me.

(n.b. for our lovely friends across the pond “Hello!” *waves vigorously*, we call it a fringe, you call them bangs)

Hannah had actually clocked Auntie Deb’s new coiffure before I did.

Clever, clever girl!

(Although I really DO need to get around to going to Specsavers pretty soon!)

I didn’t have much option but to leave Hannah there with Auntie Debs and the other staff…but I must admit, I did feel pretty bad about it…not just because Hannah was acting out of character but also for Auntie Debs.  Hannah wasn’t poorly, she wasn’t significantly distressed…she was just…well…not impressed and demonstrating her ‘not impressed-ness’ by ostracising Auntie Debs…giving her the cold shoulder, sending her to Coventry,  denying any interaction with her whatsoever.

And poor Auntie Debs had to wait over a whole day to be wholly reaccepted and acknowledged and it all changed by the following lunchtime when Hannah had deposited something rather *coughs* malodorous in her nappy and granted Auntie Debs the honoured recipient of this award by leaning on her and then lying on the floor in anticipation of a nappy (diaper) change.

How kind!

Bet Auntie Debs felt REALLY thrilled about THAT!

But on a serious note, I think people not ‘in the know’…and sometimes people who ought to be in ‘the know’…misjudge kids with additional needs.  They DO notice what you say, they CAN be aware of what you do, how you look, your mood etc.  The quote “Don’t underestimate me. I know more than I say, think more than I speak and notice more than you realise” also applies to Hannah and other children and adults with disabilities…and Auntie Deb’s new haircut is evidence of that, don’t you think?

Food for thought, eh?

 

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

Thanks, as always, for stopping by

Until next time

 

Annie xoxo

 

This post is dedicated to Auntie Debs (obviously!) but also to all the amazing ladies she works alongside…and who equally care for Hannah.  Ladies, you have NO idea whatsoever how grateful we are for your support! Thank you for looking after our precious girl *blows kisses*

p.s. A message to our lovely Barbara from Boston – we didn’t win an award at The BAPS…it didn’t come as a surprise though…but we did have a lovely time.  We’ll try again next year. xx

 

Posted in Miscellaneous, Speech, language and communication, Syndromes/Special Needs | Tagged , , , , , , , , , , , | 2 Comments

Let’s talk about mental health

mental health

Talking about mental health issues seems to have been swept under the carpet a bit, don’t you think?

(It’s just semantics, but I prefer to use the term ‘emotional health’ in this post…hope you don’t mind…bit tough if you do.  Soz about that)

Thankfully, the brick walls are coming down; there’s more and more people willing to talk about their experiences; more and more media coverage – especially recently – and, in my opinion, that’s a good thing.

Talking helps.

And it’s Mental Health Awareness week this week…so I thought I’d have a chat with you about it.

In my book (although I haven’t written a book…yet!), talking may not only help someone experiencing emotional ill health, but hopefully should spread some enlightenment…make the subject less taboo, maybe less scary, even.

No-one’s exempt.  Absolutely no-one.  Not you.  Certainly not me (I’ll get to that bit) and not even your loved ones: your parents, your children, friends, colleagues….even the people who you might approach for help to treat your emotional ill health.

No-one!

mind.org.uk state that approximately 1 in 4 people will experience a mental health problem each year; generalised anxiety and depression being in the top two mental (emotional) health problems.

For me, the statistics (for many reasons) probably don’t give a true picture of what’s going on…I’d suggest there’s more people out there, suffering in silence, too scared to reach out for help…and that makes me really sad. But the stats give us an indication that many of us are affected/living with/have gone through emotional ill health at some point.

If you fracture a limb (I hope you don’t, btw!), people will probably sympathise.  A plaster cast/NHS crutch combo is a perfect visual cue that somethings a bit…well…broken.  People might hold a door open to allow you through, they might not want to see you struggling.  They might help you out in other ways until that cast is removed.

That’s maybe not always the case when that ‘break’ happens in your head!

Now, I’m no expert on emotional health issues and please don’t take this post as such.  But what I AM expert on is my OWN experiences of emotional ill health and its impact.

…and I’m sharing this (rather personal) post in the hope that someone, somewhere, will read this, maybe relate to it a bit and then reach out for help.

…because there IS help out there.  And I really do hate the thought of someone (a) being too scared to ask for help (b) suffering in silence and feeling very much alone.

My emotional ill health manifested itself many years ago.  I won’t bore you with all the details, but it was triggered by historical stuff.  Whilst able to function ‘normally’ on a day to day basis (whatever ‘normal’ is, that is) I experienced years of chronic anxiety – which threatened to rear its ugly head in certain situations – social occasions, eating out, crowds, lifts, waiting in queues, sometimes doing new things…things that ought to have been fun.

Sometimes it was debilitating.

Sometimes I felt very much alone.

Sometimes I felt really scared and not in control of this ‘thing’ going on inside my head but manifesting itself very unpredictably in physical ways – a Clinical Psychologist explained it to me as being as close to a near death experience as you can get.  Ergo, it’s not AT ALL something to look forward to!

Sometimes I felt so damned tired of it all.

Sometimes I felt like I was dying…although I wasn’t. Thankfully!

Sometimes I felt that other people just didn’t understand AT ALL…thought I was making it all up (why the HELL they thought that, I’ll never know)…maybe I should’ve just ‘pulled myself together’ shouldn’t I?.  It’s amazing how many ‘experts’ come out of the woodwork in times like these, ain’t it?!

But I couldn’t just pull myself together…it’s not that easy *tuts and rolls eyes*

Whilst I’d sought help early on – initially through prescribed medication – the chemicals just masked my feelings and thoughts (tbh, though, sometimes I didn’t think I was thinking anything at the time for these attacks to come on!).

CBT (cognitive behavioural therapy) helped – so much so that I managed to get on a plane…alone!…Yay! Go Me! (Just to be clear though, the pilot and a few other people were on the plane too) – as did counselling – because I then began to understand who and what triggered my anxiety and who and what helped perpetuate it.  But every now and again I could feel that anxiety simmering…lurking, ready to pounce…and, ironically, that raised my anxieties, because I never, EVER, wanted to feel the way I had done.

I was getting anxious about the prospect of being anxious.

Bonkers, eh?

As far as I’m aware, there’s no one ‘wonder cure’ to treat all emotional health issues. Medication may work for some, whilst CBT or other stuff may work for someone else.  We’re all gloriously different.  When I found out Hannah was on her way into this world, I tried hypnotherapy as a last ditch attempt at a ‘cure’.  Initially sceptical, it really helped, but didn’t completely cure.

I’m still socially inept…but hey, that’s perhaps not such a bad thing and probably due to the fact that I’m not great at small talk! I still live with anxiety and it’ll probably never totally go away, but I feel like I’ve just about tamed ‘the beast’ *touches wood*

…and it’s a damned good job too!  Because as a mama to a child with significant additional needs I have a LOT to deal with and I certainly don’t want any of my stuff/baggage/issues rubbing off on Hannah.

I think most parents would probably say that being a parent is pretty tough…and a bit relentless sometimes:

The sleepless nights, school uniforms to sort out, squabbling siblings, parties to attend, kids to entertain (constantly), cooking meals that don’t get eaten, scrubbing uneaten meals off the floor/walls/your hair, providing taxi services to venues, coping with the teenage monosyllabic/you-know-nothing-and-have-never-lived-because-you’re-old years (old = over 25)  etc. etc. and etc.

But, caring for a child with additional needs is a WHOLE other ball game.  I promise you that.

It’s not just tough.  It’s 24/7 and 365 FOR.  THE.  REST.  OF.  YOUR.  LIFE.  TOUGH.

Parents who care for a child with additional needs need to be resilient.  REALLY resilient.  Teflon/Kevlar coated resilient, probably.

And it’s not our kids that intentionally cause that stress or that need for resilience.  Not at all.  It’s just what often comes with the role of being a parent carer.  Here’s some of the reasons why we have to be Teflon/Kevlar coated:

The external stuff – perhaps significant drops in household income, appointments, juggling life, navigating through bureaucratic red tape, fighting for services, chasing up services, coping with difficult behaviours – autism, ODD, ADHD, self-harm and societies inability to accommodate and accept disability – be it physical or emotional.  To be perfectly honest, the list is endless.

The in your head stuff – worries about the future, worries about the present, worries about the unknown, self-blame or feeling that others blame you for what’s happened, coming to terms (or not) with what’s happened or will/may happen, worrying about relationships with spouses and others, trying to be all things to all people and maybe feeling like a failure.  Again, this list is endless. (btw, YOU are NOT a failure! *gives serious look and points at you in a pointy way*)

Oh, and THEN there’s often the physical stuff when caring for a child (or adult) with additional needs.  The lifting and carrying, bathing, feeding, moving in the night, keeping a kid safe who’s about to do something dangerous to themselves or someone else, administering and monitoring medication, sleeping on hospital chairs (or not sleeping, actually), lumping equipment about…and, yet again, another overwhelmingly endless list which requires oodles of unwavering energy; often from a pretty jaded, but absolutely magnificent parent.

Now, if all that doesn’t impact on someone’s emotional health at some point, then I’ll eat my hat (I totally won’t be eating any hats though!).

Now, before anyone tries jumping on the keyboard and shouting at me, I’m not suggesting that all parent carers will have an emotional health issue.  But what I am suggesting is that our life can be tough…and sometimes we might have a blip here and there.  Sometimes (like me last week) we might have a 5 minute cry/meltdown combo because there’s only so much we can take without bursting a bit.  I burst a bit with the leaky eyes last week because I was just SO DAMNED FRUSTRATED (and scared) with stuff relating to Hannah’s impending surgery.  For the ‘experts’ amongst us, having leaky eyes and a red head for five minutes doesn’t mean by any means that I’m depressed….just very, VERY p*ss*d off right now…excusez mon francais! *coughs*

So, regardless of whether you’re a parent and regardless of your gender, if any bit of this has resonated with you and you’re suffering in silence with emotional ill health, please don’t suffer any more.  Please, please, PLEASE, take that step and reach out.  Get some help…proper help….from people who know their stuff.

If you’ve been unable to function over the last few days and manage to wash your face tomorrow, then give yourself a MAHOOSIVE pat on the back.  You’ve achieved something for YOU!.  Tomorrow is another day.  Maybe tomorrow you could open the curtains or change your PJ’s or put some clothes on or eat something really nice and refreshing or whatever.  Small steps, my love (but actually big ones!).  Small steps.

Never, EVER be ashamed of your emotional ill health.  Never, EVER allow others to make you feel ashamed, either.  If they think your suffering is worthy of a titter, then just let karma do its thing…1 in 4, remember? No one is exempt.  I’m sure you’ll have more empathy if the tables are turned!

Having a loved one suffering from emotional ill health can also be challenging.  Be kind to each other.  You might not fully get to understand what someone’s going through, but just being there might help.  Be kind to yourself too!

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

Just before I go though, I’ve included some links below which someone somewhere might find useful.  Sorry I can’t add links for support worldwide…it’d be an extra-long post if I did!

 

https://www.mind.org.uk/information-support/

https://www.menshealthforum.org.uk/key-data-mental-health

http://www.nhs.uk/Conditions/stress-anxiety-depression/Pages/mental-health-helplines.aspx

https://www.childline.org.uk/info-advice/your-feelings/mental-health/

 

Until next time…and thanks, as always, for stopping by.

Annie xoxo

P.S.  It’s the BAPS Awards on the 18th May…wish us luck! ❤

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Life As A Dad 

(A VIP Daddy Guest Post)

 

Remember that post I did a while back called “I See YOU”? (you can find it on the ‘favourite posts’ section of the blog).  It was one of my most popular posts…and one I’m extremely proud of.

That post was written especially for Special Mamas and, given my own experiences, I found it really easy to write.

So, following a similar theme, I decided to write something for Special Dads too, but my initial draft didn’t flow as easily.  Sure, through Hannah’s daddy, I ‘get’ some things that dads of children with additional needs might feel and think, but by no means all of it.  So I reached out to a Daddy Pal and asked for ideas for this new post, but when he sent me what he’d written I couldn’t deconstruct it; I just couldn’t do any of it justice…it deserved no tinkering of mine.

Caring for a child with additional needs can sometimes feel overwhelming and isolating and like you’re the only person in the world going through or thinking stuff…but that’s probably not the case, because there’s lots of us who might be going through or have gone through similar stuff.  So hopefully this’ll reach another Special Daddy somewhere, who might benefit from reading the words of another dad and maybe, hopefully, help someone feel less isolated.

So, without further ado (and with his permission) here’s what my Daddy Pal wrote.

Annie  xoxo

p.s. Thanks, Daddy Pal xx *blows kisses*

 

Life as a dad

 

Started as a drama:

 

Broken father of a broken daughter, broken husband to a broken wife.

 

But then I realised something…

 

I don’t know what it’s like to be a father of a kid without problems.

 

I don’t know what it’s like to be a father who’s not skirting edges of depression.

 

I don’t know what it’s like to be a father whose wife isn’t suffering.

 

I don’t know what it’s like to not be the one who goes to work, to be able to leave my daughter with my wife.

 

…and a dozen other things that make up my life.

 

What I do know:

 

I work in construction. I thought it was struggling to come to terms with gender equality.  It’s streets ahead of being a dad; everyone checks what you’re doing, comments, suggests and critiques it. I know they do this to mum too, but it stopped years ago.

 

People are surprised when I brush my daughter’s hair.

 

The healthcare people we meet too are mostly sexist. We get spoken to differently, to some extent you need to speak to different people differently but this is more than that. There are good ones where this doesn’t happen but not many.

 

A lot of the time I’m out of the loop and I worry about the amount of poop my wife has to understand, manage, and report back to me.

 

I was carrying a lot of anger early on but that’s subsiding.

 

Talking helps.

 

Advice to others:

 

There’s no such thing as a stupid question so ask away.

 

Don’t bottle up your fears, or your anger (but don’t go punchy)

 

Write stuff down, there’s a lot to take in, and when you spend a sleepless night picking over the words from a medic, having them written down helps.

 

Try and do appointments in pairs, you’ll both hear the same words but different meanings and it can help to have a second opinion of what was said.

 

Develop a filter to screen out the idiots, there’s a lot of them, but occasionally people surprise you in a good way.

 

The fear you feel is normal, the urge to run, the urge to scream, the urge to give up, is all normal. It comes from the times when we lived in caves. We try and pretend we’re advanced, but mostly it’s a mask, and the stuff you’re going through strips through that, you are back in the cave, cold, frightened and hungry.

 

You’ll have moments when you need to talk, but you’re worried you’ll scare people off. Some you will, but they may come back. The ones that don’t, it really is their loss and all I can do is hope that if they find themselves in the same place, they find someone better than they are to listen.

 

Some people will surprise you by helping.

 

Some will surprise you by actually understanding.

 

You’re worried that saying your fears will make them true, it won’t. See above for what some will and won’t do when they hear them, but your fears keep you in the cave, and that is not a good place to be, so you do need to talk.  If you’re worried you’ll crush someone, you don’t need to dump all the stuff on one person.

 

Hugs to all.

 

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Posted in Parenting, Syndromes/Special Needs | Tagged , , , , , | 2 Comments

Annie goes shopping

Or, otherwise entitled…

Man for hire!

 

 

shopping

Credit: Photofunia

 

 

Last night Hannah’s daddy and I went shopping.

By the time we’d actually got out of the house, travelled to the shopping centre and parked up, we didn’t have much time…and I was a woman on a mission!

So I stressed this would need to be a strategic “in-out-in-out-shake-it-all-about” affair i.e. run around, pick a couple of frocks up, sprint to the changing room, squeeze into something, wince and gurn in the changing room mirror, wince and gurn whilst gleaning Hannah’s daddys opinion, throw a card at the cashier (well, not throw; politely hand over whilst crying) and then get outta there…pronto!

Can you tell I don’t like shopping for me anymore?

But Hannah’s daddy LOVES shopping.  REALLY, GENUINELY LOVES IT!!!  He’s spent WHOLE days mooching round the shops looking for a perfect present for someone.  I kid you not!

He’ll stand at the entrance of any women’s changing room (not in a pervy way though, just so we’re clear!), looking enthusiastic and giving honest opinions – and not the standard “yes, darling, you look perfect” (whilst rolling eyes covertly and wishing he was at home watching the telly).

No, this guy is good!

These days, we’re like chalk and cheese when it comes to shopping.  I’m actually the one wishing I was at home watching the football/Gardeners World (Monty, I love you!)/Countryfile/anything!

…so, if anyone needs a shopping companion/personal shopping experience, I’ll gladly hire him out (for a small fee, obvs!) and I’ve no doubt he’d enjoy it immensely *wink*

Anyway, we decided the first stop would be John Lewis.  I was SURE to find something (anything) there, wasn’t I?

Erm…not so.

It didn’t help that I wasn’t in the mood for shopping (although if I’d waited, I’d have probably waited for years to be in ‘The Mood For Shopping’) and I NEED a new frock.  No, actually, I don’t ‘need’, I’m being stupid saying that…but I would ‘like’ a new frock as (in case you didn’t know) I’m hopefully – fingers and toes and everything else crossed – going to The BAPS Awards.

Eek! *gives a rabbit in the headlights but quite excited about it look*

So, we’re in John Lewis.  I stuff myself into a couple of frocks – in the changing rooms, obvs…not in the middle of the store! I’m not comfy.  I’m looking in the changing room mirrors and not liking what I see.  I really should have shaved my legs/put on some decent undies/put a paper bag over my head/moisturised.

Time to go…home!

“We’ll just have a quick look in Selfridges” says Hannah’s daddy, whilst dragging me reluctantly (screaming internally) in that direction.

Oh God, oh no, this’ll end in tears…MY tears! I thought.

So, there’s me, trudging behind him like a sulky teenager whilst he carefully peruses the silks and organza’s and sumptuousness.  It’s all a bit too shiny and nice in here for my liking.

I’m not used to this anymore. I’m out of practice.

The Stella’s and Beckhams and McQueens are held up and studied.  All beautiful.  All not me.  All needing a second mortgage to buy them.  I’d rather have been in Primarni…than Armani! I imagine me in everything that’s put in front of my face…and all I can think is – stuffed pig, trollop, spaniel’s ears, corned beef legs…oh, the thoughts are endless!

My self-esteem probably needs a bit of working on/tweeking, don’t you think?

And then….THEN…I see him.  He’s wandered off whilst I’m in a trance…and is stood where he really shouldn’t be standing…and he knows it…and he’s stood there looking all pleased with himself and holding up ‘The Frock’ by one of my icons, like it’s the Holy Grail…and he sodding knows that too!

ARGHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

How very, VERY dare he!

“It’s about time you bought yourself something” he says.  My interpretation of this comment being:

It’s about time you bought yourself something…because you can’t go to The Awards in your ‘best jumper’ that now has a huge hole in the arm where you ripped it on Hannah’s wheelchair OR those baggy track suit bottoms that have a big bleach stain on the knee. 

They’re comfy.  What more can I say?

So, the deed was done.  I sob uncontrollably on the shop assistant and wipe my nose on his tie (I didn’t, honest!) and stress that whilst it was very nice to meet him, he shall never, EVER, see me again.

…and then Hannah’s daddy drives us home, whilst I lie on the back seat, looking pale and sweaty whilst swigging Rescue Remedy like it’s going out of fashion…I didn’t really do that either!

…maybe I ought to have, though!

Anyway, where’s this post going? It’s not all about frocks is it?

Oh no!  No, it isn’t.

You see, there’s someone important that I missed out in all of this…Hannah!

We went out WITHOUT Hannah! *gasps in horror!*

Whilst the shopping stuff was a bit traumatic (slight exaggeration, really) we could just mooch around, at (sort of) leisure just like we used to do in the ‘Olden Days’, before Hannah came into our lives.  Not having to think about special buggy’s or wheelchairs or changing bags or worrying about feeding or nappy changes felt quite nice…even if it was only for a couple of hours.

We used to take stuff like that for granted.  Actually, we used to take everything for granted before Hannah came along…and that got me thinking…

Obviously, unless you walk/walked in our shoes, you’d never fully grasp JUST how restrictive and challenging it can be when caring for a child with additional needs….but it is, trust me.  Probably even some parents of children without additional needs will be able to understand/empathise to some extent…but their kids will get bigger and less dependent and then independent…whereas our kids will probably ALWAYS be dependent on us, for everything.

You see, our life pretty much revolves around Hannah.  And that’s okay, I’m SO not complaining…but everything, EVERYTHING, impacts on what you do, when you do it, how you do it…or when you don’t/can’t.  And we took ALL this stuff completely for granted, without ANY consideration WHATSOEVER before.

…And it’s even simple stuff.  Just a few tiny examples (I may elaborate another time, maybe):

  • A trip to the loo/bathroom (alone) without having to worry about what a little person is doing/making sure they’re safe/or…best one yet; if they have to be with you whilst you’re on the loo, making sure they don’t wander off to put the shower on WHILST FULLY CLOTHED…yes, people, this has happened at Broccoli HQ!
  • Walking around outside. Should be simple, really.  Not so!
  • Shopping
  • Going out for meals.
  • Sleeping.
  • Holidays.
  • Waiting…for anything
  • Safety…of anything!
  • Travelling in the car
  • Trips out
  • Nappy changes
  • Bathing
  • Brushing teeth
  • Buying shoes
  • Toys – appropriateness/safety of.
  • Vigilance – we must have eyes in the back of our heads…and use them, constantly!
  • Time…oh, time…I took you for granted, my love!
  • The weather/temperature

 

I could go on and on and on…but I won’t.

 

So, basically, life gets flipped over and thrown around a bit (lot) when you have a child with additional needs.  Having the opportunity to have a couple of hours together, child free, is positively luxurious.  Being a bit selfish and having only ourselves to think about feels good, really good…although there’s still the anticipation of getting a call on the mobile if something goes a bit wonky and parental intervention/an SOS emergency dash back is required.

But would I want the luxury of schlepping about in Selfridges or sitting in wine bars all day, every day, having waxes and manicures and spray tans and whatnot, without anyone else to think about?

Nope.  Absolutely not. Actually, I’d rather chew my own leg off!

No, I’ve learned that life really isn’t about superficial ‘things’.  I’d much rather be with my girl…feeling constantly exhausted, looking pale and uninteresting, getting bitten and mooching around in my dodgy tracky pants, any old day!

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

…oh, but if anyone wants to hire a personal shopper (Hannah’s daddy), please let me know…I’m not kidding, either.  He’s good!

Thanks, as always, for stopping by

Until next time

Annie xoxo

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Posted in Miscellaneous, Parenting, Silly stuff | Tagged , , , , , , , , , , | 4 Comments

Sometimes, you just gotta put those Super Mama knickers on!

Or, otherwise entitled…

Annie may just (definitely) have another rant!

Or…

I couldn’t make this stuff up if I tried!

supermama 

“Super Mama Knickers”

Definition (mine):

A fictional* undergarment (pictured) possessing special powers.  Typically worn when a boost of empowerment and an air of ‘mess with me at your peril, matey!’ is required in tricky/challenging times.

(* actually, maybe not so fictional, as I once bought my mate Jacqui a REAL pair of super mama knickers – yeah, I know, I’m weird buying knickers for other women, don’t worry about it  – and suggested she wore them over her clothes at very important meetings with very important people…I’ve yet to see the photographic evidence!)

p.s. Garment originally intended for mama’s, but I’d never want to exclude the dads…whatever floats your boat and all that! *wink*

 

This isn’t a post about knickers, pantaloons, drawers or, in fact, any other item of lingerie.

Sorry about that!

(Although I hope you like my attempt at the graphics…oh, and whatever you do, just don’t google ‘super mama knickers’ like I did – what popped up was just wrong.  It’d make your hair curl!)

Now, if I’d have published a post any earlier than this, it would’ve been COMPLETELY different. The original draft was a bit doom and gloom and “woe is me/us”.

No-one would’ve read it!

Blimey, I certainly wouldn’t’ve read it!

Actually, you may get to the end of this post and probably think you’ve just wasted a precious 5 minutes of your life by reading it!

…because it will get a bit Ranty McRantypants.

Isn’t it strange that in the course of a few hours, your mood/life can completely shift?  Sometimes for the better, sometimes not so.  It shifted for me not so long ago.

I’ve had a bit of time to calm down about it now, so I can write with a little more clarity (sort of)…and most definitely with a slice of sarcasm!

So, let’s go, eh?…

The other morning I woke up in the same way as I had done for the previous few days – not having restful sleep, a bit clammy, tight chested, feeling constantly pre-occupied/troubled/sluggish/unable to focus properly, limbs pulsing with adrenaline, feeling just on the cusp of an anxiety attack as the new day became yet another day nearer to the day of Hannah’s surgery.

I’d got myself into a bit of a tizz!

The countdown had begun.  I vowed to myself I’d eradicate ‘The counting down’ toxic familial trait of yesteryear.  It never was healthy.  It was inane and propagated chronic anxiety.  But in this instance I just couldn’t help myself.

And it’s all because Hannah’s surgery was scheduled for the 21st April.

But now, we have no idea when it’ll be scheduled.

…and that’s all my fault!

Whoopsy!

But as the day progressed, those feelings shifted – from anxiety to absolute fury…and I had to rustle about in the wardrobe and get my Super Mama knickers on…again!

(Metaphorically speaking, of course!)

In some ways I feel pretty bad being so anxious about something, which, ordinarily, ought to be a routine surgical procedure…with a bit of exploratory stuff and some other tinkering whilst Hannah’s in the ‘Land of Anaesthesia’.  This ought to be NOTHING compared to the experiences of other children and their families I know or follow via their blogs.

…but, in my opinion, my feelings are/were pretty valid and, relatively justifiable.

And that’s because only recently I discovered that following Hannah’s cleft surgery in 2010 she’d suffered a cardiac arrest and no-one had bothered to tell me.

Well, fancy that!

Fancy not telling me, eh?

Well, after all, why bother telling ME?

Why would I need to know?

It’s not THAT important, surely?

I’M ONLY HER SODDING MOTHER; HER NUMBER ONE CAREGIVER.  THE PERSON WHO ADVOCATES ON HER BEHALF…FOR EVERYTHING…THE.  PERSON.  WHO.  ACTUALLY.  NEEDS.  TO.  KNOW.  THIS.  KIND.  OF.  STUFF.  BECAUSE.  IT’S. REALLY.  REALLY.  REALLY.  SODDING.  IMPORTANT!!!!!!

ARGHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

*runs around living room (just once) in agitated state*

(Sorry about the big, shouty words…I think it’s pretty justifiable though, don’t you?)

Anyway, let’s quickly nip back in time to just after Hannah’s cleft surgery…

I knew she’d had a post op bleed…I saw quite a lot of the red stuff…and it certainly wasn’t ketchup!  I knew her heart had stopped – I saw the monitors and heard the alarms ringing in my ears.  I saw far too much, that no parent should ever see happening to their child and I’ll never, ever be able to erase that from my memory.

But what I didn’t know, because NOBODY BOTHERED TO TELL ME, was that this was actually due to a cardiac arrest.

(Btw, a cardiac arrest isn’t a heart attack.  If you want to know what one is, then have a look at this: https://www.bhf.org.uk/heart-health/conditions/cardiac-arrest)

So, why after all this time, did I finally get to find out?  Well, to cut a long story short (Yeah, I know, I DO go on, don’t I?) I only found out after I’d received a letter from the Haematology Department who did a couple of tests on Hannah’s blood prior to her proposed surgery.

A Doctor in Haematology actually bothered to pore through Hannah’s file (which is the size of War and Peace!) and discovered this rather important piece of information.

He subsequently cc’d me in to a letter.  Which wasn’t perhaps the best way of finding out about it…but, hey, I can’t grumble about that, I found out!

Anyway, on receipt of said letter and after several phone calls – getting nowhere with snooty jobs-worth hospital people – my ‘Sod this for a game of soldiers’ attitude kicked in, I dug those Super Mama knickers out, then I called in the Big Boys…PALS (Patient Advisory Liaison Service).  These chaps initially deal with complaints in the UK regarding health service matters.

In fact, we’ve had that much contact, I’ll probably be invited to their works Christmas ‘Do’ this year!

More phone calls and emails followed…and now someone, somewhere, has determined that Hannah REALLY OUGHT to have more tests done before surgery, so that everyone hopefully SHOULD know EXACTLY what they’re doing/what needs to be anticipated before, during and after her procedure.

You’d think this would have already been considered, wouldn’t you?

Erm, seemingly, not so.

..just like someone didn’t consider telling me that Hannah had suffered a cardiac arrest.

Dur!

So whilst I was anxious about her surgery, that mood shifted significantly on receipt of the letter, because Hannah’s NOT having surgery until I’m assured that everything will be OK…and it’ll be a mighty challenge to convince me.

And I’m really, really, REALLY cross right now.

REALLY CROSS.

Temple pulsingly, gritting teeth, not messing about type cross!

…and I don’t just want Hannah to have more tests, I want answers too.

There may be attempts to palm me off with some rhetoric.  Ranks will be closed.  People will be on the defence, naturally.  But I’m not falling for it anymore.  If I’m further labelled as kicking up a stink, then so be it.  I’ll take that.  Because my girl deserves the best possible, AND SAFEST treatment.  CONSISTENTLY.

Whilst I’ve been dubious of the rationale behind the medias portrayal of our once coveted NHS, the more I experience its inadequacies – especially involving Hannah – the more I think it’s becoming increasingly like our beautiful, much beloved terminally ill dog – in desperate need of being put out of its misery.

Far too many people – children and adults alike – are being harmed or die due to medical negligence or neglectful practice in the UK…from stuff that COULD be prevented.  Just look through articles published by the British Medical Journal, and that’d make your hair curl too! Just over a couple of years ago, the NHS paid out over £1.1 billion in compensation to patients…the following year it was c £1.4 billion to cover medical negligence liabilities (NHS Litigation Authority Report and Accounts 2014/2015).

That’s a lotta litigation…and a lotta errors…and a lotta damaged (or dead) people…and a lotta happy and wealthy Lawyers too!

And the even scarier bit is that our children and adults with disabilities…the ones who don’t have a voice, are especially vulnerable to this neglect and maltreatment.

It feels almost sacrilegious to diss this once, much loved, establishment (the NHS).  It feels almost sinful to feel so overwhelmingly distrustful of a place for sick children hailed as being filled with “saints” and “angels” who (hopefully/supposedly) work in the best interests of their patients.

…but, in my experience, they’re not all saints or angels…for some, it’s just a job…for some they possess no bedside/personable manner…for a tiny minority, they seemingly just don’t care.

…but for many, hopefully the majority, they’re doing the very best that they can.  Theirs is a vocation; working long, quite stupid hours, in a system that doesn’t work efficiently anymore.

Sure, many people will have THE most amazing experiences in hospitals…where their lives have been turned around by effective health care and I’m not knocking individual nurses or doctors…after all, my mum and stepfather devoted much of their lives to the nursing profession.  And I’ve come across some lovely, lovely people, doing a great job.  No, I’m knocking ‘The System’.

…and, right now, I think it stinks.

I’ve recently been subjected to the “Oh, she’ll be fine this time” comments by well-meaning people.  I’ve had the looks which suggest maybe I shouldn’t kick up a stink about this.  But could I live with myself if anything happened to Hannah and I didn’t do everything in my power to make sure everyone knew what they were doing…and doing it properly and safely?

No.  Definitely not!

Do I have trust issues?  Absolutely!

Am I ashamed of that?  Nope.  NOT.  ONE.  BIT.

You see, no one will EVER grasp the enormity of feelings when handing their child over to a group of people with scrubs and masks and putting ALL your faith in complete strangers, unless you’ve experienced it yourself.   This child, THE most precious person in your life.  The person you live for and devote your life to.

She’ll be fine?

No-one has the right or knowledge to tell me this and I don’t welcome these kind of throw away comments.  But you know what?  I’ll do everything in my power to make sure Hannah’s as safe as she possibly can be…this time!

So, the Super Mama knickers are well and truly on…and they’re damned well staying on!

Here endeth the rant…for now!

 

Before I go, let me leave you with this quote…

 

“Unless someone can look into the core of your heart and see the degree of your passion, or look into the depths of your soul and see the extent of your will, then they have no business telling you what you can or cannot achieve. Because while they may know the odds, they do not know you. Nor do they know the power of your angels”. – Sandra Kring

So, that’s just about all for now my lovelies.

Oh, just another thing…To all you Super Mama’s (and daddies…again, whatever floats your boat *wink*)…I hope you’ll never, ever be afraid of putting those special knickers on, because if you don’t speak up, nothing will ever change…and actually, sometimes it needs to!

Until next time

Annie   xoxo

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Posted in Miscellaneous, Parenting, Syndromes/Special Needs | Tagged , , , , , , , , , | 2 Comments