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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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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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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You should’ve said!

Or, otherwise entitled…

This may end up being a bit ranty (sorry!)

should

I’m feeling overwhelmingly anxious right now.  I’ll probably share this with you in my next post.  But for the purposes of maintaining a modicum of sanity, I’m feeling the need to write something to take my mind off that stuff, so please try and bear with me.  This might get a bit ‘ranty’…it may be a bit funny too (that’s all subjective though)…but, as always, I’ll hopefully, eventually, get to the point.

(Warning for the squeamish/easily offended: this post discusses poo)

 

So, if you’re not squeamish or easily offended, get comfy, here goes…

We love going to the seaside and a few weeks ago we had some sunshine – yippee! – so we packed up the car and set off for the beach.

On arrival, we decided to make an impromptu visit to our favourite hotel for lunch…a treat…and, whilst it’s a bit posh and we usually rock up looking like the Beverley Hillbillies, the staff are always very accommodating and the food is scrumptious.  Oh, and a big bonus is they have an EXTREMELY clean disabled loo…AND Molton Brown hand cream!

Winner, winner, chicken dinner!

(Well, when I say ‘disabled loo’, it’s not got a changing place or similar, but at least the floor is immaculately clean for a nappy change…with no risk of Hannah or I catching anything dodgy!).

Anyway, we had a really lovely lunch and I was SO proud of Hannah sitting in a ‘grown up’ chair to eat whilst not making attempts to push herself backwards/launch herself off it or throw food on the floor *sigh*.

Lunch done, tummy’s full, it was time for a mooch on the beach.

However, shortly after leaving the hotel, I could’ve kicked myself.

“Oh, flippin’ ‘eck! I probably should’ve checked Hannah’s nappy whilst we were in there” I said to her daddy.

But whilst the hotel staff wouldn’t have minded, I didn’t feel I could’ve gone back in.  I KNOW! stupid, huh?

So, next stop was a visit to the public loos and the only one we knew in the area with a disabled one.

So, off we trotted.

(…and here’s where you need to use your imagination…apologies…this may get a bit graphic!)

Imagine about five or six vacant outdoor public loos in a row, all unisex, but only one marked ‘Disabled’.  We needed the one with space (the disabled one) so we could get Hannah and her special buggy in there.

Other than the three of us, there was no-one around at this point.  So we stood facing the disabled loo and I mooched around in Hannah’s changing bag for the RADAR key.

The RADAR scheme (according to the internet) was designed to aid access to suitable toilet facilities for disabled people.  The aim of the key being to prevent damage and misuse  – as apparently people were using disabled toilets to use drugs….or engage in a bit of *coughs* rumpy-pumpy.

EW!

*shudders*

Whilst I rustled around the paraphernalia in Hannah’s bag, a lady approached and entered one of the regular toilets.

…then Sharon (29) arrived with her two son’s Josh (7) and Ben (5).

(Granted, I’ve absolutely no idea what Sharon was actually called or everyone’s ages…that’s just a guesstimate…but we’ll leave it at that just for ease of reading and assume the rest)

Sharon proceeds to open the disabled loo with ease.  There was no RADAR key required, apparently.  The thing was open all along!

Doh! *slaps forehead*

Seemingly, someone had left the lock locked and closed the door on exiting, so it didn’t shut and lock (if that makes sense).

…and hereby follows the narrative…

“Ben, you stand there” said Sharon firmly, gesturing to a spot outside the disabled loo.  “I’ll stand here, Josh.  Go on, have a wee” She said, ushering Josh inside and holding the door ajar so she could watch over both kids.

Now, before anyone even THINKS about jumping on the keyboard trying to tell me off, I am NOT employed by ‘The Disabled Loo Police’.  Furthermore, I know there are thousands of people out there with invisible disabilities who’re just as entitled to use the disabled loo as Hannah is.  It’s dead easy to make an assumption…however, in this instance, Josh, thankfully, wasn’t really in need of any disabled facilities.

Sharon couldn’t see us standing there.  It appears we must’ve been wearing Harry Potter’s invisibility cloak that day!

It’s my own fault.  I should’ve drawn that RADAR key out as swift as a cowboy (or girl!) drawing a gun out of its holster instead of faffing about.

I snoozed, I losed!

Despite us standing right in front of the disabled toilet, Sharon was in that loo as quick as a rat up a drain pipe.

So, I did a bit of an internal sigh, smiled wearily at Hannah’s daddy and placated Hannah whilst we waited.

“Come on, Josh.  Have a wee” said Sharon sternly.

Remember the lady who entered the non-disabled loo’s on our arrival?  Well, at this point she exited and, holding the door open, asked whether we wanted to use that one.  How kind.

“No.  Thanks ever so much, though.  We need the disabled one” I said.

We smiled at each other and she went on her way.

You should’ve said!” Said Sharon, who was now looking in our direction.

Luckily, I was in a relatively good mood….so I just said…

“Oh” (feeble, I know)

“Come on Josh, someone needs the toilet” Sharon hastily urged – now looking a bit flushed after FINALLY grasping why we were stood RIGHT IN FRONT OF THE DISABLED TOILET.

“I think I need a poo, mummy” said Josh, his little voice resonating from within.

(“Oh JUST great”)

“Sorry” said Sharon looking at me “He needs a poo”.

(No shit, Sherlock! – now, excusez mon francais here…and attempts at a pun…however, I couldn’t help but hear Josh, plus Sharon was entering into the type of running commentary that I REALLY didn’t desire!)

I did another silent sigh in my head, gave a half-hearted, semi-understanding ‘mummy smile’ at Sharon and said “Well, it’d be rude not to”.

It’d be rude not to?  IT’D BE RUDE NOT TO? WHAT WAS I SAYING?!!!

Seconds passed.   “COME ON, JOSH” said an increasingly irritable and tutty Sharon, whilst trying to put on her best ‘I’m out in public so I’d better not speak to my kids the way I do at home’ mums tone.

“It won’t come out” whimpered poor, constipated Josh.

“Well, just pull your pants up then!” said a tetchy Sharon.

“Oh, it’s coming now” said Josh.

“Have you done?” asked Sharon

“No, there’s more coming” Josh said.

“Sorry” said Sharon, looking more and more embarrassed as the clock ticked.

(No!  Stop right there Sharon! Don’t tell me “there’s more coming”.  I heard him. Kill me.  Kill me now.  Just chuck me in the sea and let’s have done with it! Thought I)

Silence…

“Done it!” Said a jubilant Josh

(Thank you, God!)

We were then subjected to the running commentary inside the toilet whilst Sharon did what mothers (and fathers) need to do ‘post dump’.  I’ve put you through enough already, I’ll spare you that.  You’re welcome.

Sharon, head down, then ushered her children away, without giving me eye contact, a leave or goodbye.

…and we were then left to enter the gates of hell (i.e. the disabled lavatory).

It was filthy (understatement).  The floor was wet through and, by this stage, even more malodorous than prior to little Josh’s visitation.

There was absolutely NO WAY I was lying Hannah down on a floor like that.  So, Hannah’s daddy and I (whilst trying to hold our breath) utilised our creativity and did a bit of shimmying and dangling of our precious (and wiggly) child in order to sort the nappy situation out.

Job done and we were outta there.  Pronto!

So, let’s rewind a little.  According to Sharon, I should’ve said.

But what should I have said, then?

Wasn’t this child, sat in her massive special needs buggy, intermittently chewing on her hand and singing something completely unrecognisable, enough of a giveaway that we may’ve needed to use a disabled loo? That this kid had pretty obvious significant additional needs? That maybe, just maybe, given we were standing right in front of the door, we may’ve needed TO USE THE DISABLED TOILET?

We weren’t stood there just for the fun of it! We weren’t out for a jolly, going disabled toilet spotting!

There are enough plonkers in this world who, when approached, (no matter how civil you are) would fly off the handle.  Who could potentially be aggressive – verbally or physically or both.

I’d never met Sharon before, so how was I to know how she’d react if I’d said something? and whilst I’ve managed some pretty tricky situations in my past, I really don’t want to have to do so whilst Hannah’s present…although, if pushed, I would!

Life’s challenging enough as it is.  It’s by FAR more challenging when you have a child with additional needs.  Trust me on that!  So, should I really have needed to say anything?  Really?

…but in the grand scheme of things, whilst I wasn’t particularly enamoured at listening to the running commentary of Josh’s bowels, it wasn’t a big deal.  We weren’t in a rush.  It wasn’t raining.  Seemingly, Sharon was in a rush though.  Sharon was having a nice day out at the seaside.  We were just loitering around the toilets!

Sharon’s “you should’ve said” comment DOESN’T excuse ignorance and this happens in numerous situations which we and, I’m sure, countless other families may face on a daily/weekly basis.

Thoughtlessness.

…People SO wrapped up in their own little worlds, that they can’t be bothered to see the bigger picture.  They seemingly possess no foresight.  People in so much of a rush that nothing and no-one else matters.

And it seems to me that disabled signs, whether in parking bays or on doors or wherever are becoming increasingly pointless.  So perhaps we should get rid of them all and have done with it?

Oh, there are some incredibly kind, thoughtful people out there, don’t get me wrong on that.  But it’d be REALLY lovely if more people were just that little bit more vigilant;  If people gave more thought to their actions.  If maybe more people walked through a door and checked behind them – just in case someone with a buggy or wheelchair or an older person or someone with limited mobility were following behind – so that door didn’t swing back on someone.  It’d be great if people were more aware of their shopping baskets and how they could easily clonk a child in the face whilst sat in their pram or little wheelchair.  It’d be absolutely AMAZING if those people who go to collect kids from schools DIDN’T PARK IN THE SODDING DISABLED BAYS DAY AFTER DAY AFTER DAMNED DAY!!!!!!!!!!! – even if it’s just for a few minutes…because someone MIGHT ACTUALLY NEED to use that bay.

They REALLY ought to consider themselves INCREDIBLY lucky that they, or their children or grandchildren, DON’T ACTUALLY qualify to use those bays….OR ACTUALLY NEED to use those disabled toilets.

Should we (parents of kids with disabilities or, indeed, adults with disabilities) need to say something?  To everyone?  Repeatedly?

It seems so.

But I’m not going to.  I have enough to deal with.

Maybe, just to appease or enlighten the Sharon’s of this world though, I should have something tattooed on my forehead instead.  Maybe I should walk around carrying a great big whopping placard when I’m out with Hannah…or even a megaphone…or, yeah, maybe I should go the whole hog and just do the lot! Why not, eh?

I think there’s a learning curve in many situations.  In this instance, I have learned that, in future, should I ever forget to check Hannah’s nappy, I will not think twice about returning to the hotel restaurant and using their swanky, clean, fresh-smelling, disabled toilet!

…Oh, and here’s a tiny piece of advice for the Sharon’s (and Shane’s) of this world too…maybe TRY and think (I know it must be hard) before using a disabled toilet or a parking bay or anywhere else with a disabled sign on it – even if you’re only using it for a few minutes.  If you don’t use them, then you won’t need to feel embarrassed (that is, assuming you possessed a conscience!) if families just like ours turn up.  It’s kinda simple, really.  Just a thought!

Right, mini-rant over, methinks.

…aaaannnndddd breathe….

 

So, my lovelies, you’ll probably be relieved to know that’s all for now.

Sorry it all got a bit ranty…and longwinded.  It did me the world of good though! 🙂

Thanks, as always, for stopping by

Until next time

Annie xoxo

BAPS-2017-Finalist-Badge

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Six months

Gentle Reader, please don’t be deceived by the title.

This is not an announcement of an impending birth at Broccoli HQ in six months’ time.

Oh, no!

Whilst ones muffin top could easily be mistaken as harbouring a ‘mini-Hannah-mark-2’ in-utero (in my utero, to be precise); I am not, and will never, EVER, be declaring that I am again ‘with’ child.

(My usual ‘never say never’ attitude has gone right out of the window on this one!) 

Nope.  Broccoli HQ will not hear the patter of more tiny human feet – other than Hannah’s (she still has feet the size of a baby and whilst her plodding around the house could often be mistaken for a herd of wildebeest, I wished they’d grow a bit!).

…and anyway, whilst I do genuinely adore children, I can just about cope with one child.  Blimey, if I had another one, you’d probably find me rocking in a corner somewhere, stuffing a whole packet of jaffa cakes into my mouth and swigging prosecco straight out of the bottle, whilst sobbing despairingly.

No, rather, said muffin top is more than likely the result of too many Cornish pasties…and…erm…a few (a lot of) jaffa cakes.

Yum!

Actually (back to the title, here), I’m rather conscious that I’ve neglected the blog for quite some time.  And that just won’t do, will it?.  But life kinda got in the way a bit – you know, like it does.  In fact, it’s still in the way to some extent, but I promised to keep you updated on OBGB aka ‘Operation Big Girls Bed’ (Hannah moving into her very own bedroom, over six months ago now – hence the title) and so this is my opportunity to bring you up-to-date.

…so here it is…

Erm *stares at keyboard in bewildered manner*

Okay, where do I start?  It’s been a while; I’ve forgotten how to do this writing thing.

ARGH!!

*ponders*

*scratches head*

Ah.  Right.  Got it.  Here goes…

 

first morning in new bed

Big Girl’s Bed!

 

If you’ve just stumbled upon us (Hello! *waves vigorously*) Hannah is 7 years old.  I’ll spare you my wittering’s as I’ve (a) already rambled on enough at the start of this post (b) written about OBGB previously.  However, just for info, in a nutshell, Hannah (for a number of reasons) slept in our bedroom up until just over 6 months ago.

So, how’s it been since OBGB was initiated?

Well, it’s actually been a bit of a mish-mash of stuff, really; challenging at times.  Interesting.  Hilarious.  Exhausting (TOTAL understatement there!)

However, as is often the case, Hannah’s been an absolute superstar and, whilst it took quite some time, she’s pretty much *touches nearest piece of wood* adapted beautifully.

Hannah not only made the transition from our bedroom, she also moved to another floor level, out of a cot bed, into a grown up single bed and into her very own bedroom!

That’s quite some feat for an average kid to adapt to, let alone for a child with significant additional needs!

On reflection, I think Hannah adjusted better than I did.  Whilst we were all ready for that change, I missed her.  I worried about her.  I know! Crazy, huh?

But I have perspective. I am lucky.  I can still see and hear her on the baby monitor – sleeping, wiggling, snoring (and blimey, can she snore!), breathing and generally messing about in the middle of the night.

Obviously, each night (well, most nights) I go to sleep, but probably like a lot of parents, I don’t sleep as soundly as I used to do.  Having a child who’s been affected by apnoea – who used to stop breathing in her sleep – who’s non-verbal, who has significant additional needs, pretty much conditions you to being on red alert…constantly, without any respite whatsoever.   Add into the mix the dreaded reflux and it’s absolutely no wonder why I look so jaded most of the time (okay, all of the time!)…and, often, can’t string a sentence together coherently!

Alongside the baby monitor, however, I’ve had to invest in an eye mask, as despite turning the screen to the lowest possible setting, it’s still really shockingly bright.  Unfortunately, the eye mask designers seem to have failed to make their product sufficient enough to accommodate a schnozzle like mine and so I often wake to find it sitting on my forehead, or round the back of my head, or beside me on the pillow.  Pointless.  *sigh*

Still, said monitor has been witness to a number of interesting goings on.  Here’s just a few examples:

  • Small child caught trying to ‘bounce’ on her bed in a precarious manner – Hannah style – between the hours of 1am and 3am!…and when caught in the act, gives you a ‘look’ as if to say “What? What’s your problem, mummy?”
  • Several graceful slides out of bed, whilst still asleep. Bed guards aren’t an option – she’d only try and climb over them – so twenty billion cushions (slight exaggeration) surround her bed.  Child is subsequently scooped up by half-asleep parent and is placed back into bed.  Child remains asleep and blissfully unaware throughout.  Alright for some, eh?
  • Countless wanderings around the bedroom, trying to escape into the kitchen – no doubt the intended mission being to play with the gas knobs on the cooker and kill us all. Great!
  • Just general shenanigans and messing about.
  • Staring into the baby camera and gesturing towards the door as if demanding to be released from the bedroom – which really freaked me out…because, although all she could see was a tiny green light on the camera, it was if she could see me, looking at her. Proper spooky! *shivers*
  • Singing (again, Hannah style) and/or laughing in the middle of the night – because it’d be rude not to.
  • Flicking the light switch on and off incessantly at silly o’clock, for no apparent reason…just because she can. She’d make a fantastic lighthouse keeper, if anyone’s recruiting!
  • And, of course, for quite some time post OBGB ‘launch’, the monitor would’ve shown either her daddy or I, sleeping (okay, probably just lying down, trying desperately to sleep) on the Ikea bed chair, just to make sure that transition went as smoothly as it could.
  • And, Oh!, the piece de resistance; a covert (completely nonsensical) mission which involved attempts to undress, success at pulling the nappy off, finished by a sneaky wee on the floor – you know, like you do!

 

So, there you have it – a bit of an update on the kid and her shenanigans over the last 6 months.

And poor little Broccoli HQ is now in dire need of a replacement stair carpet – after all the traffic it’s had during the night/early hours when Hannah’s daddy and I have had to get up to tend our child’s needs.  Honestly, we’ve been up and down like yoyo’s!  (I was going to say we’ve been up and down like a bride’s nighty…but that would’ve been a bit crude!)

Right, I’d better be off.  I guess that’s all for now, my lovelies.  I’ll try and get my act together and write again soon.

Thanks, as always, for stopping by.

Until next time

Annie xoxo

p.s. Have you seen my finalist badge for the BAPS?  Immensely proud…and feeling very honoured!

This post is dedicated to Norman Emerick – inventor of the first baby monitor in 1937.  Bless you, Norman!

BAPS-2017-Finalist-Badge

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The BAPS

“WHAT?”

“NO WAY!”

“Seriously?”

“SERIOUSLY????”

“NOOOOOOooooooooooooooooo!!!!”

“It must be a typo, surely”

 

*holds ipad at arm’s length and squints a bit at the screen…because she hasn’t got around to going to Specsavers, yet!*

 

“I don’t believe it….”

“WHOOP WHOOP!!!”

“YEAHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!”

“BOOYAH!!!!!”

*runs around living room (once)…then flops on sofa in a pale and sweaty state, with a rabbit in the headlights expression*

“Oh.  Dear.  God”

 

 

That was me the other day.

The previous 48 hours or so had been a bit of a nightmare (understatement).  I’ll spare you all the details – you’re welcome –  but Hannah was in agony and the painkillers (Calpol, my love, you let me down this time!) weren’t even touching the sides…ergo, we’d had no sleep.  Not even a wink.  Hannah was exhausted, her self-harming behaviours were off the scale and she was pretty fed up…and consequently so was I.

But reading this news (above) woke me RIGHT up!

Let me give you a little preamble type thing…you see, three years ago I started a blog.  This blog actually.  I began writing for a number of reasons (if you want to know more, please go and have a ganders at the “About” bit on the blog) and I’ve happily rambled on ever since.  It’s been cathartic for me and I’m delighted that it’s made a difference to a few other people too.  Our lovely followers grew organically – through wordpress and then a year later through facebook too (oh, and Instagram and Twitter…but I’m rubbish on there, sorry guys!) and these people have been the ones who’ve spurred me on, celebrated with me, cried with me, laughed with me (or at me!), shared their experiences and views with me….and maybe, occasionally, they’ve learned a little from me too.

I proper love my blogging family! ❤

 

Writing about life with a daughter who has a rare genetic syndrome which affects most aspects of her life isn’t ever going to be a popular mainstream topic.  Most people won’t want to read about “The Grand Tale of The Glitter Poo Debacle” or contemplating a Fosbury Flop in my wellies with Hannah tucked under my arm and those other wittering’s of mine.  I don’t post recipes of fabulous looking organic vegan cupcakes or beauty tips (God help you all if I did!).  I just…well…ramble on…and whatever’s lurking in my head, just comes out on a page (screen).

And during my time blogging I’ve come across other bloggers – who didn’t ramble on one bit, they were/are FAR more articulate than I! – who also have things to share about life with their children with additional needs – the peaks and troughs, useful info, funny stuff, the heart breaking stuff too.  But whilst we all had our own sites, there wasn’t even (as far as I’m aware) a half decent collective platform on which to celebrate what we all did.

But then in October 2016, this amazing thing happened…the BAPS Awards were born! (Bloody Awesome Parents Awards)

Bloggers like me, who occupy a teensy part of the blogosphere and get very little attention now had something of our OWN – The BAPS is a joint venture between My Family Our Needs and Bringing Us Together – two groups who’re involved in the SEND (Special Educational Needs and Disabilities) community and who totally ‘get it’/our lives.

Yay!

So basically, this will undoubtedly become the Dogs Dooh-da’s of SEND blogging ….and the other day I found out that our little blog – My Kid Loves Broccoli – is in the finals of their very first awards….THE FINALS!!!! In three different categories.  THREE!…AND the awards ceremony will be hosted by Sally Phillips…SALLY PHILLIPS!!! (Hannah’s daddy has had a bit of a crush on her for like FOR-E-VER!)

*fist pump*

…and then, after reading the news and running around the living room (once), that little internal self-doubt/negativity bunny of mine whispered slyly in my ear…

“Why the excitement? – You’ve never aspired to get an award before, so why now? You’re SO not worthy of any of this.  There’s far better bloggers out there more deserving of an award; who’re more articulate, more popular, who have thousands of followers.  How could someone like you even get to the finals?  It’s all been a big mistake.  Give up now.  Who’s going to look after Hannah whilst you’re off gallivanting to some awards ceremony?  You can’t go…life’s on hold until she’s had her surgery, remember? You’d have to buy a frock!  You’d have to talk to people!  You’d have to enjoy yourself!”

So, after listening to the bunny, I chopped some carrots and then plopped the little bugger in a great big pan of boiling water sitting on the hob* and shouted “Be gone with you Demon Bunny!” and sang Gloria Gaynors “I am what I am” at the top of my voice whilst twizzing round the kitchen.

(*Metaphorically speaking, of course!…we at Broccoli HQ don’t condone any form of cruelty to real bunnies or any living being, EVER!)

So, why this post?

Well, firstly to tell everyone that we’re in the finals.  THE FINALS!!!!!!!!!!

That’s a HUGE achievement in itself as apparently there were lots of bloggers nominated – so mahoosive thank you’s and squishy hugs go out to the people that nominated My Kid Loves Broccoli ❤

…and thank you to all the Judges who took time out to read my (rather lengthy, often inarticulate and grammatically incorrect) blathering’s and put the blog through to the finals…I am (as we say ‘Up North’) “Proper chuffed”.

…and HUGE congratulations to ALL the bloggers who were nominated, regardless of whether you got to the finals or not.  You’re making a difference.  Keep going, my lovelies ❤  In fact, I think we’re pretty much ALL Bloody Awesome Parents – whether we write a blog or not.  Don’t you?

 

So now we come to the last bit where I ask for your help…

I’ve decided there’s absolutely no point whatsoever listening to the Demon Bunny and giving up at this stage.  I need to be pro-active.  After all, people have taken the time to nominate me and to read my posts and put us through to the finals.  It’d be a bit ungrateful if I didn’t do anything at this stage!

This round is for the public vote…And as old Brucy (Bruce Forsyth) said in Play Your Cards Right “Points mean prizes”.   So, I need your votes (points); lots and LOTS of votes to have even a remote chance of winning anything.

Why should you vote for My Kid Loves Broccoli?

Honestly? I’ve no idea.

(I’d never get a job in sales or promotions, would I?)

Ah well.

But as my mum used to say “If you don’t ask, you don’t get”

So, I’m asking (nicely) and to completely misquote the beautiful and talented Julia Roberts in the film Notting Hill…

I’m just a girl (well, erm, I’m a bit too old to be called a ‘girl’ these days…but we’ll skip over that bit)

Standing in front of a boy (I’m actually sitting on the sofa, typing…and maybe you’re not a boy)

Asking him (or her!) to love her (that’s VOTE please…although feel free to love me too, that’s fine)

PLEASE CLICK THE LINK BELOW AND VOTE FOR MY KID LOVES BROCCOLI

You’ll find us in three categories:

  • The truth about SEND
  • Promoting positive perceptions
  • SEND with a slice of humour

http://www.myfamilyourneeds.co.uk/baps/enter-round-2/

vote-6

Credit: Photofunia

 

Oh, and if you could share this post with other people via social media, that’d be just fabulous.

So, I guess that’s all for this post, my lovelies

Thanks, as always for stopping by

Until next time

Annie   xoxo

This post is dedicated to Hannah’s daddy.  Because I’m a rubbish wife for not buying him anything for Valentine’s Day (whoopsy!) and thanks for filling my hot water bottle up.  That’s not a euphemism, btw.  Just to be clear.   

And, dare I say and at risk of sounding a bit grovelly (which it SO isn’t, I don’t ‘do’ grovelly…it’s a genuine thanks), to Bringing Us Together and My Family Our Needs for giving all SEND bloggers this amazing platform.  Thank you! 

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Washing-up gloves and plastic chickens

I believe that kids are kids, regardless of whether they have additional needs or not.  But there’ve been times when I’ve been a bit curious as to how other people, especially other parents of average, non disabled children, perceive Hannah.

On a few occasions, I’ve seen them clutch their child closely whilst we pass by.  Maybe it’s out of courtesy – making way for a mama pushing her child in a wheelchair or special buggy.

Maybe it’s not.

…it’s the accompanying ‘look’ that’s the giveaway – as if Hannah may, somehow, infect their beloved poppets if they enter our personal space *rolls eyes* Sadly, I know of other parents who can testify to having similar feelings and experiences.

But thankfully it’s not happened often.  Nevertheless, when it has it’s smarted – a bit like lemon juice on a paper cut.

I wonder whether they presume just by looking at her singing away in her buggy, that Hannah is completely dissimilar to their own child?  Or that she doesn’t display any of the typical traits and glorious idiosyncrasies that any other child without additional needs might?  Maybe.  Maybe not.  I’d have to ask them.

Well, my lovely reader, allow me an attempt to dispel some possible assumptions…because, in many ways, Hannah does behave similarly to other kids. Whilst she’s poles apart from her mainstream peers, she’s actually not that much different to a little person you might know…or, in fact, maybe how you were as a child.

So, just for a moment let’s forget about Hannah’s chronological age (7, but she functions like a little person aged around 6 months to two years) and have a look at her current take on life:

 

Why have a dog and bark yourself?:

Why bother doing anything at all if you can get away with not doing something?

Hannah’s ‘servant’ pecking order is…

Number 1 servant – mummy

Number 2 servant – daddy

Number 3 servants – grandma/grandad

Number 4 servant – anyone else

 

If I don’t look in your direction, you won’t know I’m doing it:

Need I say more?

 

Selective hearing loss:

Hannah was once diagnosed with hearing loss.  Now, it appears her difficulties lie in processing the information that she hears.

Ask Hannah to do something she doesn’t want to do and she’ll totally ignore you.  Try and discreetly open a packet of crisps (that’s chips to our lovely friends across the pond “Hello!” *waves vigorously*) and she’ll hear you a mile off!

You WILL surrender the crisps!

 

Mess is best:

Yes, in Hannah’s world, there is no such thing as tidy and clean:

 

Baths are for playing in, not washing.

 

Hair is for pulling, rubbing on something until knotty, massaging food into.

 

Food, if deemed unacceptable, is thrown on the floor.

 

Yoghurt is for smearing on all glass surfaces…and the TV.

 

Drinks are for pouring on your head/down your top.  Ribena is a rather splendid liquid for spitting on white walls *sigh*

 

Water based paint is for tasting prior to, during or after the application of it on paper.  In fact, why bother with paper, when you can just lick the paint off the brush?  (btw, what DO they make water based paints from?…it’s allegedly safe…but it doesn’t come out of clothes very easily…if at all! So who knows what it does to the insides of little people! *looks concerned*)

P1000028.JPG

Toys are for scattering over all available floor space. Tidying up during waking hours is futile.

 

 

Silence is SO not golden

Aside from her verbal stimming, sing song noises, raspberry blowing and teeth grinding, toys (or anything else, really) must be bashed repeatedly and with as much force as possible…or thrown…or both.

Broccoli HQ is rarely a tranquil environment!

 

Social etiquette

Doesn’t exist.

Strangers are often tasted (erm, okay, bitten).  Attempts will be made to remove clothes whilst out and about. Fingers are placed up noses (anyone’s), farts will be followed by much hilarity.  Runny noses are often wiped on clothes (again, anyone’s) before a tissue can be sourced.

 

Clothing

Hats and gloves are rejected – no matter the temperature outside. Shoes are kicked off…repeatedly.  The hood of coats are currently to be worn only indoors, covering the face; small giggly person shall then stumble around Broccoli HQ unable to see. This is, seemingly, an excellent game.  Frocks are for pulling over your head and having a moment.

 

IMAG0734.jpg

…just having a moment

 

 

“No”:

No shall be ignored.  There is no such word as “No”, apparently.

 

What’s mine is mine…and what’s yours is mine:

This includes food.  Your food will be pawed.  You will be stared into submission.

 

Telephones/communication/IT etc:

Adult people should not be allowed to speak to each other.  Ever.  Tactics are implemented – usually involving plastic missiles (toys) or quietness/covert behaviour.  Grown-ups shall not complete any important looking work whilst in the vicinity of a small person – especially on a computer.  Laptops will be touched with sticky paws, keyboards will be pounced upon.  Work may be lost.  Tough.

 

Plans and time:

Plans will be scuppered periodically.  Obscure illnesses requiring medical attention are particularly effective prior to any holiday, special occasion or when mummy wants to meet up with someone or has something really, really, REALLY important to do.  Kids seem to know the most effective time to be poorly!

There is no such thing as time.  No matter how much planning and preparation is made, grown-ups will be made to be late…for everything.

 

Tiredness:

Fatigue must be accompanied by a mahoosive spurt of energy, general madness and potentially dangerous shenanigans…or tears…or all of the above.

 

Danger:

Like “no”, the word or concept doesn’t exist.

Repeated attempts to bite the cord of the hairdryer whilst mummy tries to dry small persons hair shall continue until further notice.

Attempts must be made to touch everything. This is the law.

 

Furniture:

Sofas are not for sitting on.  Lolling, upside down, however, is wholly acceptable.  They may also be bounced upon in a precarious manner.  Toys are to be stuffed underneath…the servants are required to retrieve them on demand.

Beds are also rather bouncy.

 

Fixations on inanimate objects:

Blankets, dolls, teddies, coats, specific pieces of duplo – you name it, it’s probably been cherished, walked about with, bitten, pushed up the nose, placed in the bath and/or taken to bed.

Currently, we have a fixation on the washing up gloves, a plastic chicken and a coat.  This is subject to change anytime soon.

 

See?  Perhaps not so different after all? She’s a unique little individual in her own right.  One of a kind, with her own thoughts and feelings and little quirks.  But in many ways she’s not completely dissimilar in some behaviours to kids with or without additional needs.  Not so different from kids who can or can’t communicate.  Not so different from kids who can or can’t move their limbs. Not so different from how you or I probably were in our childhood.

…and she’s certainly not contagious…although her smile might be!

 

But you know what my most favourite parts of Hannah’s attitude to life are?

 

That it must be embraced.  Every day, hour, minute ought to be filled with as much fun and curiosity and exploration as possible.

It doesn’t matter to Hannah what she or you look like, what clothes you wear, what car you drive, how big your house is, what colour of skin you have, whether you can walk or talk or move.  Hannah will still love and accept you, just the way you are.

And whilst us grown-ups run around all day, being busy and getting stressed and worrying about what’s happening in this changing world, wouldn’t it be just fab if, only for a little while, we could take a leaf out of our kids’ books?  To just ‘be’ in the present moment. To loll on the sofa, with knotty hair and blue paint stained teeth, eating crisps whilst cuddling a plastic chicken and a washing up glove.

Yeah, I think so!

 

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

Thanks, as always, for stopping by

Until next time

Annie   xoxo

 

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The sorting hat, moody cows, celebrities and Hannah goes surfing

Hello my lovelies!

I hope you had a fantastic Christmas and here’s to 2017 being a wonderful, healthy, happy one for you all and for your loved ones too.

Hey, have a guess where we’ve been?

Yep, you guessed it (probably) and IT.  WAS.  PERFECT.

Tbh, unusually, I was a little reticent to go as – as you’ll probably know if you follow us on facebook – Hannah’s been having problems with her teeth and is due to go into hospital at some point soon for an operation.  But, thankfully, she was okay and had a rather splendid time, I think/hope.

The weather was kind – mild with the exception of one blustery, wet day.  We managed to have a rest (Oh, I SO needed it) and we just schlepped around at our leisure, visiting places, met up with friends, looked at houses *grins* and spent time on the beach.  Lovely jubbly!  At times, when she was calm, we managed to get Hannah to sit on a regular, grown up chair to eat – rather than using her Go To seat (a fab specialist seating aid for kids with additional needs)…yay!

It all went far too fast and I’m counting down the days until we’ll be there again.

…in our Cornish Broccoli HQ.

So, here’s a little summary of what Hannah got up to…

 

On Christmas Eve, Hannah met two celebrities – Helen Glover: British and Olympic professional rower (ranked number 1 in the world..oooh!) with her lovely new husband – Steve Backshall: naturalist, TV presenter, Strictly Come Dancing competitor and an utterly DE-LICI-OUS specimen of manliness.

Ding Dong!

I mean, come on, have you seen those muscles?!!? *erratically fans flushing face*  (don’t tell Hannah’s daddy I said that, though…shhh…it’ll be our little secret, okay?).

Anyway *composes self*, they were both SO nice…and Helen didn’t flinch when Hannah attempted to bite her fingers.  Thankfully, we left her completely intact…phew!

 

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Three celebrities

 

We also went to church on Christmas Eve…and Hannah snoozed (and snored!) all the way through the children’s nativity service.  Typical.  *sighs*.

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We visited our friends who own an organic beef farm.  Hannah was captivated with a calf and spontaneously tried to stroke it *melt*…although I was a little more preoccupied with one of the cows (not the mama and apparently usually quite placid) looking rather menacing and moody whilst sharpening its MAHOOSIVE horns on the side of the barn door.   Hannah and her daddy are pescatarians…but judging by that glint in its eyes, I’m convinced it knew I was a carnivore!  *quickly googles vegetarianism*  So whilst Hannah was preoccupied, I was formulating our nearest escape route and deliberating on whether I could manage a Fosbury flop over the fence, with Hannah tucked under my arm…and in my wellies!…should the need arise.

 

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I had one eye on the camera, the other on the moody cow to my left!

 

We visited the Cathedral and lit candles, like we always do, for our loved ones no longer with us…

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…and then there was the sorting hat.  Oh, WHAT a reaction we had on facebook with that one!  (thank you!!! ❤ )

You see, Hannah’s daddy took his new hat away with him.  He loves it.  But it’s not a run-of-the-mill, average hat that you can get off the high street as he isn’t a run-of-the-mill kind of bloke, really.  I’ve subsequently named it the ‘sorting hat’ – like in Hogwarts, from the Harry Potter films.  Anyway, one day we decided to walk the Camel Trail.  Pre-Hannah, we may’ve cycled the routes, but this time we walked several miles with Hannah, who was contentedly singing away in her special buggy.  The trail is incredibly popular – even at this time of year – and so naturally we came across lots of people.  Now, if you didn’t read this specific facebook post, I’ll have to explain a little here….we’re quite used to people looking over/staring at Hannah when we’re out and about. Ordinarily, we’re not that fazed anymore.  We’ve come to expect it.  But sometimes, just every now and again, we get a little irked – all dependent on people’s reactions.  However, with Hannah’s daddy wearing the ‘sorting hat’ not one person stared at her.  NOT ONE!  Honestly!  I kid you not!  They were FAR too preoccupied gawping at the hat instead.

It was extraordinary.

…and rather refreshing!

…so if you’re a Special Parent and are getting a bit tired of the starers…just get a sorting hat.  IT TOTALLY WORKS 🙂

And Hannah’s daddy was so chuffed at the reaction on facebook, he’s suggested it be an occasional feature on there.  It made his day.  Bless! He doesn’t get out much.

 

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Hannah, daddy and the sorting hat

 

We welcomed the New Year in and watched an amazing fireworks display…although Hannah wasn’t too keen as the spectacle reached its optimum.

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We went on the beach most days.

I love taking Hannah there.  She can safely wander around to her hearts content.  She’s more relaxed there than anywhere!

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Awh!

 

We ate lovely food…LOTS of lovely food.  Too much lovely food, actually *burps* Pardon me! *puts hand to mouth then googles gym membership*

 

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Having a bit of a sing song after lunch!

 

And Hannah went surfing.

Well, sort of surfing – but without the wet suit and the surf board.  So, technically not surfing at all, I suppose.

If you’ve been with us a while, you’ll know that last year I wrote a blog post about Hannah noticing the waves approaching the shore and trying to run away from them (heavenly).  I clung onto her as best I could, although she managed to break free from me at one point.  But this time I decided to just stay close, give her a little bit of freedom, not hold onto her, not do my usual ‘helicopter mama’ impression *anxious gulp*.  Over her plethora of clothing, she wore her waterproof suit (haha, yeah, right!) and her wellies – which she very much resents wearing.  As we approached the shore, Hannah noticed the waves and just stood there, watching the water gently flow over her feet.  She loved it…and I loved watching her having fun, often in her own little world – I’d love to know what’s going on in her head!  But then, she made two tiny steps further into the water and turned her back to the sea. A ‘wave’ (actually, more like a large ripple) caught her unawares, knocked her off her (typically doddery) feet, causing her to fall backwards, and was subsequently swept swiftly back onto dry land.  Fleetingly, I was worried about her reaction, however, Hannah being the true adventurer/slightly feral child that she is, absolutely LOVED it, squealed with delight and once I’d scooped her up, made attempts to go back into the water.

…which was SO not going to happen, as a quick dash home to strip off the now-not-so-waterproof-suit and 300 kilos (slight exaggeration) of saturated nappy, a warm bath and removal of half a ton of sand (again, slightly exaggerated there) out of her ears was required.

I shared the post with friends. Saying…”It started like this”…

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“…and ended like this”

…with the hashtag (and excuse my language here, but she was!)

#pissedwetthrough

(but also deliriously happy)

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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 the Cornish Pasty…om nom!

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Ta!

 

Or, otherwise entitled…

 

Blimey, that’s come around a bit quick!

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Well, it’ll very shortly be our third anniversary!

It’s been three whole years since I started this blog.

THREE.  WHOLE.  YEARS!

Fancy that! Who’d have thought, eh?

I could never have anticipated when I first started writing that we’d still be floating around in the blogosphere; with me waffling on (as I do!)…and maybe having a bit of a rant from time to time (soz about that! *looks sheepish*) and Hannah just being…well…utterly fabulous (and still rather scruffy) and surprising us all with her antics:  like stealing from baby Jesus, to swallowing teeth, to saying ‘Hello’ for the first time…to well…everything, really.

So, before t’internet goes a bit wobbly – you know, like it does at Christmas – and you all get tucked into your turkey and whatnot, I wanted to say ‘Ta’ (thank you…thanks SO very, very much) to you ALL for your support:  whether you’ve just recently joined us, been with us for a while or even since those first words were published – through the blog (wordpress and email followers) and through our likers and followers on Facebook, Instagram and Twitter too.  We’re only a couple of hundred views short of reaching 24,000 now and you’ve visited us from across the world…even the Northern Mariana Islands (I had to look you up guys, sorry…I thought my geography was ok…clearly it wasn’t!).

Your support over these last three years has been absolutely incredible.  I really do mean that!

However, saying thank you just doesn’t feel ‘enough’ really.

But ‘Ta’s’ all I can offer right now (yeah, stingy, eh? apologies) but, just know it’s heartfelt.

Now, it might sound a bit corny, but I truly am humbled and honoured that you’ve joined us…AND even stayed with us – despite my ramblings!  For some of you it’s probably because you have a child with the same syndrome as Hannah; maybe others, because you have a child with additional needs.  You may know Hannah or I personally (sorry about that! *winks*), you may not know us…or are friends of friends or people we’ve met on this journey of ours, or even a professional interested in learning more about real life with a rare child with additional needs….and maybe you’ve just stumbled across us via The Mighty, Love That Max, Same But Different Project or somewhere else.

Nevertheless, whoever you are and wherever you are in the world, just know that you’re welcome here, anytime….and I hope you’ve got something/anything out of reading my stuff…but mostly a smile (tbh, I’m getting a bit fed up of making people cry! That’s SO not my intention…AT ALL..honest!).  From the onset, I pledged I’d write from the heart and that’s what I’ve done and aim to continue to do, but it’s also important to share the other stuff…the hope, the worry, the amazingly good times, the perhaps not so good times.  Because that’s life, isn’t it?  For all of us.

I can’t begin to tell you how touched I’ve been when you’ve celebrated Hannah’s achievements with me and your response when I heard her say her first word this year absolutely BLEW ME AWAY!  It was totally and utterly bonkers.  Thank you SO very, very (VERY) much. I’ll never forget that.

Ordinarily, the average parent may not blog or post on facebook like I do, but those achievements in our world are mahoosive and worth celebrating.

Anyway, here’s hoping I get the chance to share more of that stuff with you sometime…as long as any new words aren’t expletives! *gulps*

As you may already know, I set up this blog for several reasons – one of them being for cathartic purposes – mission accomplished! *does celebratory jig* and also, for other people just starting out on their own journeys with a loved one with CdLS (Cornelia de Lange syndrome) – so that they didn’t feel so alone, just like I did at the beginning.  And, I’m pretty sure I’ve achieved that too! *does backwards moon walk AND fist pump*.

…although I never thought I’d still be rambling on for this long.

But I am 🙂

However, through this blog, I also hope that I’m helping to change people’s perceptions a little.  That when they meet a child or adult with additional needs, they see a person first – not a disability, not a diagnosis or whatever.  Just someone different to themselves…gloriously different, just like we ALL are….but in many ways, not dissimilar.

So, that’s all for now, my lovelies.

Thanks (again) as always for stopping by.

Until next time…and wishing you a happy, healthy Christmas ❤

Annie  xoxo

 

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‘Tis the season to be jolly

Or, otherwise more aptly entitled…

 

Spare a thought

 

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Credit: Photofunia

 

I wasn’t really sure how to start this post, so I guess I’ll just ramble on for a bit (nothing new there then, eh?) and hope it makes sense.

So, if you weren’t already aware, Christmas is almost upon us.

For many people who ‘celebrate’ Christmas, it’s a time of festivity: getting together, eating, drinking, complaining about the sprouts, watching a TV Soap with bated breath and wondering who’s going to get clobbered around the head and ‘snuff it’ (die) this year, giving and receiving presents and, maybe, just maybe, even celebrating Christ’s birth!

Fancy that, eh?

It may be a day of consumption, indulgence, merriment and slobbing in front of the telly, doing absolutely nothing, other than perhaps reaching for the Rennies when the indigestion or heartburn gets too much – once all the cooking and washing up’s been done, of course.

But… (there just has to be a ‘but’ with me, doesn’t there?)…

For others, it may well be a day like any other, or a day tinged with sadness or unbearable challenges: like displacement from their country of origin or separation from family members, famine, warfare, domestic violence, sexual abuse, homelessness, terminal illness, disability, loneliness, suicide, grieving for the loss of a loved one.

I won’t go on.  I’m sure you get my drift.

But despite others’ tragedy and adversity, life still goes on for the rest of us, doesn’t it?…because it has to…because we want it to.  Because, well, that’s just what life does…until the time comes when it doesn’t go on, of course.

I guess, since Hannah came into the world, I’ve had a much more heightened awareness of and experienced the challenges (and heartache) that caring for a child with additional needs brings – and the fragility of life too!

But we also get on with things.  We’re fortunate that we can go on holidays and trips. We celebrate birthdays and Christmas, just like lots of other people do…often with a twist…there’s probably always a plot twist!

Because far more thought, preparation and planning has to go into pretty much everything.  Spontaneity goes out of the window.  Stuff crops up and plans may have to be cancelled or amended.

I’m sure my fellow special families will concur!

But I/we couldn’t expect anyone else to know that or understand any of it, unless they live it.  Unless they walked in our shoes. Experienced our life.

And, really, why should they anyway? It doesn’t affect them.

So, yeah, Christmas – as I mentioned in my last post, may be different for us compared to the majority.  But we adapt.  We try and make the most of it.

And for many special families, there’ll most probably be the turkey and tinsel and presents and merriment and whatnot.  But life doesn’t just stop like the average familys might do for a few days.  The festive season probably won’t give our families a breather or maybe the luxury of lying on the sofa, watching the telly all day. There may also be the same, often time-consuming, repetitive stuff or maybe new things thrown into the loop: peg or NG feeds, blended diets, aspirating, flushing out, nappy changes, stretches, therapy, positioning, medication, keeping a child in meltdown safe, carefully timing how long a seizure lasts and contemplating whether to dial 999, visits from community nurses, dashes to hospital or living temporarily in the hospice…waiting, catheterising, applying distraction techniques during a bout of self-harm, putting a brave face on for everyone after a new, heart-breaking diagnosis.

This list is not exhaustive, btw!

None of that stuff just stops simply because it’s Christmas day or Boxing Day or any other day, you know?  Most of it won’t wait until the chocolate orange or Quality Street have been guzzled and the Queen’s done her speech, James Bond has drunk another martini or the Grinch has made friends with the residents of Whoville.  It all must still happen at the time it’s supposed to happen, no matter how long it takes.

Tis the season to be jolly? Well, actually, every season ought to be jolly, really, ideally, don’t you think?  However, whilst you’re tucking into your turkey and pigs in blankets (we don’t ‘do’ turkey at Broccoli HQ, but living with 2 pescatarians, I get the little piggy’s in blankets all to myself…yum!) or goose or nut roast or whatever, please spare a thought, a brief second at the very least, for those having a less easier, perhaps more challenging day than you this year;  for those who wished the day would be over and done with, for those whose hearts are heavy, for those who never made it to today.

Hold your loved ones and your babies a little closer, because you have the luxury of that this Christmas, because they’re here with you this year.

Please, try and not take that for granted.

…and maybe, give a little bit of thanks too!

 

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Credit: Photofunia

 

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

Just in case I don’t get around to writing any new posts for a bit, we wish you and yours a truly wonderful, peaceful Christmas and a happy and incredibly healthy 2017.

Until next time and with our love…

Annie & Hannah xoxo

 

This post is dedicated to CC, ED and RD – beautiful boy

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