Once upon a time

Oh, to be a child again!

Even though it was *coughs* some considerable time ago, I recall the bliss of opening a book and jumping into magical worlds filled with enchanted forests and mystical creatures; worlds where good triumphed over evil, where anything was possible.

As a result, I thought I’d (yet again) allow my imagination to run free in this post and adopt a similar theme.  However, Gentle Reader, this will be no easy read.  This will be no feeble fable, nor is it a fanciful story of legendary deeds and mythical beings.  There are no faeries or Cornish Piskies (WARNING: spoiler alert coming up!) nor is this an Olde-English tale of “Happily Ever Afters” or of Knights in shining armour saving the day.

Soz!

So, you brave enough to enter another world with me?

Yeah?

Good!

Okay, hold my hand.  Let’s go.  One…two…three………….JUMP!…….

 

once upon a time

Credit: Photofunia

 

Once upon a time, in a land far, far away, lived a beautiful little Princess.

Her home was a palace in the Kingdom of Broccolia (see what I did there?  #genius!) with her parents – the King and Queen.

Throughout the seasons, the castle walls were bathed in warm sunshine and swathes of fragrant flowers filled the garden where the Princess played.

It was a happy place.  A safe place.

The Queen loved her precious child more than life itself and her heart was filled with adoration…but it also held a pool of infinite sorrow.  A sorrow that no parent should ever have to endure.

For her child was a golden child; a rare child who possessed magical powers; virtuous powers, but few would ever wish to understand them.  And although she embraced everyone regardless of their differences, many shunned the child.  Few wished to be a part of her life.

Thankfully, the child was blissfully unaware of her effect on others and her days were filled with laughter, learning and much joy. She danced, carefree and barefoot, amidst the flowers.

And each night, when the stars shone like diamonds and the child prepared to slumber, her mother her held in her arms and sang the same gentle lullaby, in the hope that her daughter would forever hold this in her memory.

But one evening, as the Queen lay alongside her child sleeping softly, a single melancholy tear rolled down her face.

“What feeds your sorrow, my love?” asked the King, as he lay a tender hand upon her shoulder.

“One day we must go to Paradise, what will become of our child?” said the Queen.

“She will remain here until it is time to join us” he replied.

“But who will care for her?” asked the Queen.

The King consulted with his trusted Soothsayer, but alas, no answer could be found.

After much contemplation, the King replied “We shall seek a guardian for the Princess”.

But this quest would require the King and Queen to leave the safety of the castle.  It would entail a perilous and exhausting journey.  Nevertheless, it was a journey they were required to take.

However, beyond those walls hid fire breathing dragons and the village at the foot of the castle lay cast in darkness, for it had been affected by a foul and irrevocable curse which was sweeping the land – the curse they called Marginaliseatus-Egocentricum.

This mission would necessitate much courage.

And so, with hope and trepidation in equal measures, the Queen, accompanying the King, embarked upon their journey.

The inhabitants of Broccolia comprised of a number of dubious clans including: the Ne-er-do-wellers, the Nimby-ers and the Gawkers.  Tales of the Princess had reached these inhabitants, none of whom wished to cast their eyes upon her, for they believed that to be in her presence would place a wicked curse upon their own offspring…a curse far too strong for the Alchemist to remedy.  Met with great hostility, the King and Queen swiftly passed by their dwellings, travelling onwards to more noble clans.

On reaching their next destination, the King and Queen shared their plight with the clans people, who listened intently.  And after much deliberation, decreed that they could never provide a safe haven for the Princess.  For whilst they were fond of the child, her mere presence within the community would change their lives immeasurably.

They believed the child could contribute nothing to their community.  She would be a burden.

And thus the quest continued.  Through treacherous, snow-capped mountains, past troll inhabited caves and over desert plains, the King and Queen journeyed on, until they came across a barren and dismal land where no flowers grew and no birds sang.

As they approached the only timeworn residence, perched precariously at the edge of an abyss, a corpulent and scaly man, with open arms and a deceitful smile approached.

“Welcome, welcome!” said the man, with insincerity and gluttony shining in his raven black eyes.  “I am Diabolos Alicanto Ministry.  How can I be of service?”.

With foreboding, the King and Queen presented their plight.

The man adjusted his golden robes.  “When it is time, she must come here.  She will have a room of her own and be fed and watered by my servants”.

This man strove to uphold the pretence of nobility, but keen to feed his fiscal desires, he then said “But of course, there will be a price to pay.  The Princess will no longer retain her title.  She will no longer dance or play.  You will proffer your castle and all of your possessions.  She will become exactly as the others have who ventured here.  She will become of the Now Forgotten Clan”.

Aghast and in fear of what the future could hold for the child in this place, the King and Queen rejected the proposal and continued on their quest.

…but where would they go to next?

 

 

 

Okay, let’s get back to reality, shall we?  Hold my hand.  Ready?

One….Two…Three…………JUMP!

Crikey, that made for a depressing read, didn’t it?

Ah, but Gentle Reader, as you may have gathered, this isn’t a tale of another world.  It’s actually based on the harsh reality of many parents of children with additional needs; the question we have no other option but to contemplate, should our children outlive us…

What will happen to my child when I’m gone?

And it’s something no parent should ever have to think or worry about, isn’t it?

Will you care for my child? is a question we should never have to approach anyone with…should never have to ask with bated breath.

…but we do.  If we love our children, then we may have no other choice!

Many parents of non-disabled children will drop off this mortal coil in the comfort of knowing that their (perhaps, hopefully, now adult) kids might be okay.  Life may not be easy at times, but they might get by.  Maybe.

Whereas our children may not even be able to attend to their own basic care needs and may well be reliant on others for the rest of their lives.

But who are those others?

Friends?  Family?  Local Authority?  Who knows!

I’d guess that many parents of children with additional needs don’t have the luxury of access to enough money to purchase the perfect facility with the perfect staff in order to prepare for the future.

Most parents won’t ever have that peace of mind.

How must it feel for a parent who worries about what the future might hold for their child? Well, feel free to step into my head, just for a second, and I’ll give you a little insight into some of my thoughts…

No-one wants to or is willing to care for Hannah – After all, why should they? there’s no benefit in doing so.

As a result, she could end up living in a loveless facility where disillusioned, underpaid staff talk over her and not to her.  A place where staff come and go.  Maybe they’ll hardly interact WITH her…unless they have to.

Will she get to sleep in clean, dry bedding each night?

What’ll happen to those photos of us together?  Will they be thrown carelessly in the bin, or will she be given the opportunity to look at them from time to time?

Will she always be safe?  Free from abuse?

No-one will bother to visit her.

Birthdays will come and go without acknowledgement…unless someone thinks to note it down from her case file.

Perhaps the last hug she’ll ever get will be from her daddy or I.  Maybe no-one will ever think of comforting her.

Will she be talked at in that dreadfully loud fashion we often see, where everyone with a disability is considered to have a severe hearing impairment?

She’ll be directed, expected to comply.  What if she doesn’t?

Maybe some may like her, but they’ll come and go.  Maybe some will tolerate her.  Some will dislike her.  And their attitude towards her will reflect their feelings.

I won’t be able to protect her anymore.

Maybe she’ll die alone, in pain, because everyone missed the signs.  Because no-one bothered to know her anymore.  Because no-one really cared.

No-one will be accountable.

No-one will grieve for her.

No-one will attend her funeral but the vultures will be eager to pick the bones.

She will quickly be forgotten.

My beautiful, precious girl.

 

Perhaps if you don’t live in our worlds, you’ll consider this is all a bit dramatic.  But guess what?  There are countless reports of younger, older and people with additional needs being subjected to abuse and neglect and dying in this ‘green and pleasant land’ of ours – Winterbourne, Connor Sparrowhawk, Ely, Longcare, the list is endless.    It happens to our most vulnerable, make no mistake about that.  But of course, such is life that we keep our heads in the sand, until something affects us or a loved one.  We remain blissfully ignorant to it all.

Out of sight, is out of mind!

 

Did you find any of this difficult to read?

I can’t even apologise. Because it is what it is.

But try and imagine, if you can, what it was like writing it….and then, go a bit farther and imagine what it’s like living with those thoughts; those crushing, agonising fears.

It’s not easy.  Not easy at all.  Maybe some will consider I ought not to be having those thoughts…and fears.  Maybe I ought to be “looking on the bright side” instead of being all pessimistic.   Well, I guess, given that I have no other option but to plan a whole lifetime for my (currently) eight year old child, then how could I not?  I can’t predict what the future holds, however, for me, only a total fool would fail to consider the pitfalls.

But regardless, I won’t allow these fears to become all-consuming.  After all, we have a life to get on with!

However, each and every night I’ll continue to sing that lullaby to my girl, in the hope that when my bones become dust and she’s all alone, she remembers that she was once loved and cherished in this world…and will be so in the next.

Until next time…

Annie xoxo

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One of those ‘something in my eye’ moments

If you gave me a pound for every appointment I’ve attended for Hannah since her birth, I’d probably be able to afford that house I’ve got my eye on in Cornwall.

I kid you not!

(Don’t worry, that’s the last time I’ll mention Cornwall in this post…possibly)

…and I bet that goes for most, if not all, parents of children with additional needs.

(I mean attending appointments, not buying houses in Cornwall)

Over the years, we’ve seen, or continue to see: cleft team people, special dentist people x 3!, Occupational Therapist people, physio people, portage people, orthotics people, heart people, consultant orthopaedic surgeon people, wheelchair people, eye people, paediatrician people, blood people, genetics people, dietician people. ear people, community nursing people, speech (or not!) people, the list goes on and on and on and….okay, I’ll stop now.  I’m sure you get my drift and if you got fed up reading a portion of the list of ‘people’, then just imagine what it’s like co-ordinating and attending said appointments!

I KNOW!!!  #exhausting!

Appointments, meetings and whatnot, don’t ordinarily faze me.  But it necessitates I switch my ‘mummy head’ off for a while and transfer to ‘professional head’; detach (as much as I can), get on with the task in hand i.e. liaise with other professionals, ascertaining the best way forward, to ensure that Hannah’s needs are best met…or try, at least.

I’ve learned over the years that if ‘mummy head’ stays switched on, I’m at risk of being unable to focus properly (or at all!)…and, perhaps, get a bit emosh – dependent on the ‘theme’ of the appointment or how frustrating things may get.

…and that just won’t do.

Now don’t get me wrong, there’s nothing wrong at all in being emotional. After all, it’s part of being human, isn’t it? but if you’re at risk of those emotions becoming all-consuming, then, perhaps, it’s best to have a chat with someone – someone who can actually provide an informed, professional diagnosis and help you get treatment if necessary – and not one of those amateur mental health ‘experts’ – like ill-informed people you know who’re keen to signpost you to a doctor…just because you have a weep every now and again *rolls eyes*

Anyway, during most of Hannah’s appointments, it’s vital that I stay focused.  But sometimes it’s not that easy – in the early years there were many occasions where I got a bit teary…for a variety of reasons.

Most days, like most parents, I feel hardly able to string a sentence together and just lollop about like a zombie (an exhausted zombie, I hasten to add!). And if you ever meet me, you may assume I’m a bit aloof.  I’m not, not at all.  I’ve just become socially inept, can’t make small talk…and am still a little bit shy, sometimes.

But when it comes to ensuring Hannah’s needs are met, I can talk the hind legs off a donkey*, rattle off HUMONGOUS words rather articulately *raises right eyebrow in a totally bragging way* and engage in medical discourse better than an actor on Greys Anatomy (Confession:  I’ve never watched a single episode of that, so I hope they do actually talk about health stuff on there!).

* Btw, with reference to the donkey stuff, the internet says that this is a literal translation of the Gaelic (apparently) which actually means “making a donkey sit down on its rear end”.  So when someone can ‘talk the hind legs off a donkey’, they may talk so much, they can do extraordinary things…or, my interpretation being they just talk a lot!

(I’m not suggesting that the people I communicate with are donkeys.  Well, erm, not many)

So, where am I going with this?

Well, I recently attended a health appointment – regarding Hannah, but without her (if that makes sense).  I was advised the appointment would take around an hour as this was an assessment to ascertain whether Hannah was eligible for a service.  The outcome being that she was….yay!…more people to see! More appointments to juggle! More ‘monitoring’ rather than useful intervention (perhaps).  Oh what joy!

Anyway, during this appointment I was asked to describe Hannah’s needs; from sleeping, eating, communication, continence, dressing…blah, blah, blah…the whole kit and caboodle.  It was very thorough! And over the years it’s got a little easier to talk about what Hannah struggles with, whilst leaving the mummy emotions out of it and not feeling like a complete failure (I used to feel like a failure ALL of the time…even though my rational head kept reminding me that I wasn’t.  At all).

This appointment most definitely required ‘mummy head’ to come off for a bit!

About an hour and a half later (whoopsy!) we were coming to an end, when the person completing the assessment advised that she always liked to end by discussing the child.

I gave her a quizzical look…I thought we’d been discussing Hannah for the last 90 minutes!  Had she not been listening?

…then…PING!…lightbulb moment.  I knew what was coming.

Oh dear!

“Tell me about Hannah” she said

(Oh, crikey!…this is not good! Emotional “mummy head” is at risk of sneaking itself back on without my permission….this just won’t do!)

“Well…she’s…”

(coughs to clear throat, but not as much as Theresa May at the recent Tory party conference!)

”…she’s tenacious”

(Smiles. voice wobbles)

“She’s got a zest for life I’ve never known in anyone else…”

(Oh God, I’m going…)

“She’s….”

(Oh no! oh no! NOOOOOOOOOOOOOOOOO!!!!  the eyes are tingling, one side of the mouth is quivering a bit…don’t…don’t, don’t do it, you plonker…pull yourself together woman!)

“She’s…just…erm…”

Pauses for composure.

“…Wonderful”

Oh, sodding hell! That’s gone and done it!  I now have something in my eye…something a bit watery!  Maybe my tear ducts are just perspiring…it is a bit warm in here.

 

eye

Credit: photofunia 

 

Silence in the room.

I doubt I could’ve said any more.

A comforting, understanding smile was given.

The meeting ended shortly after.

Phew!

Now, when not caught off guard – like when I blog, for instance…hiding behind a computer screen – I can shout from the roof tops (not literally though, not on Broccoli HQ’s roof!) about how wonderful I think Hannah is.  How precious she is.  How I’ll love her to eternity.  How she’s enriched my life more than I could’ve EVER imagined or could articulate.  How she grasps life by the throat and gives it a good shake.  How utterly, utterly bonkers she is sometimes…which makes me laugh…and scared in equal measures!  How she can light up a room with her smile.  How I’d give my life to protect her.

…but it’s much harder for me to say these things to a total stranger, in person.

I think maybe, when working with children with additional needs, and no matter what career path you’re on, you can easily lose sight of the personThe child.  THE most important thing (for want of a better word) in your intervention (and, let’s face it, what’s keeping you in a job!).

Often, in order to find a way forward, the emphasis is pretty much always on what a child CAN’T do and many medical assessments overlook who the child IS and what their strengths are.  WHO they ARE.  Because their disability (or disabilities – plural – as in Hannah’s case) don’t define who they intrinsically ARE.  They’re just a part of them.

My child is not a medical diagnosis.  She’s not Cornelia de Lange syndrome.  She’s not Autism.  She’s not a cleft palate. She’s not a profound and multiple learning disability.  She’s not fixed flexion contractures or a bilateral superior vena cava (ooh, hark at me with the words!) she’s not all the other labels she’s been given over the years.

She’s Hannah.

So, whilst it came as a bit of a surprise to have been asked about Hannah…the child…MY child…it was also extremely welcome and quite refreshing!

Good on you, lady professional…like a breath of fresh air, you were!

I think I’d better take tissues at the next appointment though.  You know, just in case it’s a bit warm in there!

 

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

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

 

Annie xoxo

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Did you have a nice summer?

 

 

Did you have a nice summer?

 

 

 

summer

Credit: Photofunia

 

It used to be one of those questions I’d dread being asked.

 
Mostly because my feeble response (probably including some grunting and gurning) would more than likely be perceived as rather glum (nothing new there then, eh? *winks*)
I couldn’t lie and fluff it (rarely can!) and enthuse over the previous 6 weeks and completely skip over the fact that I was TOTALLY and UTTERLY exhausted – both physically and emotionally – and was extremely glad the summer was over.

 
Sounds bonkers wishing my life away, doesn’t it?

 
…but I was simply drained.

 
You see, life didn’t stop just because it was summer and there was no school. We didn’t spend all our time in some glorious place (aka Cornwall); enjoying lazy, carefree days and cosying up under a blanket whilst sat on the beach, watching the sunset on a calm summers evening.

 
Oh no! That’s not how we rolled.

 
Life went on; Hannah’s appointments went on. Random illnesses went on. Supporting Hannah in adjusting to that dramatic change in routine went on. Getting up in the night went on. Self-harm went on. Responding to letters/appointments and speaking to professionals went on. Reflux went on. Grown-up-responsibility-type-things had to go on. Bathing, dressing, cooking, feeding, nappy changes all went on (I’m sure you get my drift. I’ll stop now. You’re welcome). Very little changed…apart from the fact that my spine became significantly more aware that it was required to sustain even more lifting, handling and carrying of a strong, incredibly wiggly child who had/still has no concept of hers and others’ safety.

 
Sure, there were trips out; more so than in school time. But that isn’t by any means whatsoever having ‘a rest’ when you’re caring for a child with additional needs…and that ideology should only ever be considered by a fool.

 
We tried going away on holiday. But holidays in peak times weren’t even a rest either.
In fact, we’ve learned to avoid summer holidays as, wherever we’d go (Cornwall…obvs!), there’d be too many people around and too much sensory overload for Hannah to feel relaxed. And if she’s not enjoying herself, then we’re not. Simples! Throw in the aforementioned getting up in the night, random illnesses, reflux, bathing, dressing, feeding blah, blah, blah that we have at home (all that stuff doesn’t just stop when you go on holiday!) minus all the gubbins (things) at home that make life a little bit easier e.g. changing beds/shower chairs etc and it’s a wonder why any families with children who have additional needs go anywhere at all….ever!

 
All that stuff sounds a bit negative, doesn’t it?

 
I can’t even apologise…because it is what it is.

 

 
But what I did get to see over those holidays, were those little ‘awakenings’ (for want of a better word). Someone described her recently as being like a flower…blossoming over the summer. There’s always been some (albeit tiny) growth spurt. In addition, there’ve been those glimmers in her development/cognition where something new happens…and I wouldn’t have wanted to miss those for the world. You can’t buy that stuff!

 

 

So, has this year been any different?

 
Well, it was okay, actually.

 
It seems to have flown by, though. The fact that Hannah went into hospital shortly after the end of term and her subsequent recovery most probably had an impact.

 
The weather has been rubbishly inconsistent – to the point where one minute we’re wearing sweaters and wellies, dodging a cloudburst/hailstorm and digging out the hot water bottle/switching on the central heating and the next we’re reaching for the sun cream, scared that Hannah’s skin would turn lobster-like…bonkers! Although I DO have perspective…there’s other places in the world where the weather has, sadly, been catastrophic. So whilst I am British and it’s in my DNA to complain about the weather, I can’t complain, really.

 
Again, this summer, life went on. Hannah’s appointments went on. Grown-up-responsibility-type-stuff went on. Dressing, bathing, feeding blah blah blah all went on….as did keeping a small, active person who has no concept of her own safety, alive…and away from the A &E Department (Blimey, have I tempted fate there? Btw, for our lovely friends across the pond, A&E is the equivalent of the ER…but with a 4 hour wait to be seen…probably)

 
And whilst we haven’t had a holiday at all this year (the wait for Hannah’s date for surgery put paid to that *sigh*) we had lots of trips to the seaside and the park. Hannah even managed not to eat the fish pellets whilst feeding the Koi carp…YAY! (Although she did try to bash one on the head when it bobbed up close…not a good move Hannah! *looks stern*).

 
We opt for places that aren’t too busy, that we can escape from easily, as I’d rather chew my own leg off than traipse around a packed zoo or whatnot with Hannah in her buggy or wheelchair – feeling invisible, whilst everyone walks RIGHT IN FRONT of her or she’s actually unable to see very much because everyone else is at risk of impaling themselves on the railings/squashed up to the glass, for an opportunity to gawp at the animals doing nothing for the next 50 minutes!

 
We actually cleared a playground not so long ago, though. I think the other parents thought we were contagious and ushered their precious poppets away. It was GREAT!!…we had the whole playground to ourselves!!! We weren’t even wearing our cow bells around our necks and I wasn’t shouting “unclean, unclean” and handing out clove covered oranges that day!

 
…I just popped Hannah on a swing.

 
BOOYAH!!!

 
Funfairs are also one of my worst nightmares.

 
…as are soft play areas, trampoline centres, small animal farms, the cinema…or actually anywhere confined…with people.

 
(Lordy, we’re sounding like we’re complete recluses!)

 
We did celebrate birthdays and spend days with family and friends though…which was lovely.

 
…and again, there’ve been those tiny glimmers in Hannah’s development; being a little calmer and concentrating when we did crafts or baked, watching some TV – HOORAY! FINALLY!!! (although I’m still a bit gutted I can’t use it as an electronic babysitter), biting into an apple – not something most people would think is a big deal…it is for us! Being a little more receptive…oh, and not eating the sand in her sandpit. Always a bonus!

 
…although the getting up in the night at completely random times has been OFF. THE. SCALE this summer…mummy is really not impressed, Hannah. Not impressed AT ALL. Believe it or not sweetheart, my eardrums don’t delight in hearing a whole box of Lego being tipped on the floor at 4.20am…and I doubt they ever will!

 
And whilst this summer’s been busy and I remain absolutely shattered, still in dire need of an effective LONG rest, still have back ache, still my usual moany (but honest!) self…I got to spend it with my girl.

 
Adieu Summer. You’ve been okay this year…aside from the weather. Try and make the next one a good one, will you…and less wet?

 

 

 

So, that’s all for now my lovelies.  Hope you had a lovely summer

Thanks, as always, for stopping by

 

 

Until next time

 

 

Annie xoxo

 

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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

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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

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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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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*

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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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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.

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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

 

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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! ❤

BAPS-2017-Finalist-Badge

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