Invisible child

This needed to be written today.  I’ve no idea why.  Hope it makes sense.  Here goes:

A client

A case

A patient

A statistic

A budget

A diagnosis

A Service user

A name on a database

 

And to some, you are invisible.

 

But you are none of those, child.  Always try and remember that.

 

The pubescent boy, desperate to attain recognition, especially from his father; he doesn’t see your little face through the window; doesn’t wish to see the fellow human being contented just to watch the world go by; fascinating shapes and colours whizzing past your eyes.

All he sees is a convenient opportunity to assert a transient alpha male status; to demonstrate his authority amongst those current disciples of his, whilst they dawdle in a pack approaching the school gate.

Constantly and secretly guarding his own insecurities, he takes the opportunity to make those disparaging remarks and gestures at that bus going to that place.  Wholly confident that he’ll always be immune to vulnerability.  He’ll never be one of them. He’s strong, important, worthy…and entirely ignorant to the fact that no-one, even he, will ever be awarded immunity.

He laughs, they laugh.  They are the sheep and he is the momentary shepherd.  His status is safe for now.  He’s earned his badge of honour today at the expense of others.  Demeaning the vulnerable is praiseworthy.

To him you’re nothing.  Just something to mock.  You’re invisible to him, child.

But little does he know that you’re immune to this despicability.

Actually, he’s the one needful of the most pity; his parents have never taught him empathy.

Perhaps, one day, should karma tap him on the shoulder and whisper in his ear “who’s next?”, he’ll have forgotten about those times.

 

 

Crowds of people.

Rush, rush, rushing.  On they go.  Criss-crossing the pavements like busy worker ants.

Must get there.  Have to get that.  They need it, deserve it.

Wrapped up in their protective bubbles.

They don’t see you, they don’t want or need to see you.  They can purposely avoid eye contact when necessary.

Circumventing the contagious.

They brush past your wheelchair, their shopping bags swinging precariously close to your face. Any closer and they’ll catch you.

You’re invisible to them, child. 

You’re an obstacle in their way.  A hindrance.  A second wasted to hold a door open.  A millisecond squandered to make room on a congested footpath.  That time could’ve been spent more productively on their phone; taking selfies, seeking likes and admiration.

They’ll look through you or they’ll gawp.  But there are a minority who stop, who give a genuine smile, who take time to connect.

I fear though that compassion is on its knees and almost dead.  Viva indifference!

The majority don’t see you…

…but they’ll see the disabled parking space provided for someone who needs it most and they take it, without shame.

…they see the disabled public toilet and they take it.

…they see the lift that saves them time rather than taking the stairs…and they’ll take it.

And to them child, you are invisible. 

Ah, but if only they aspired to be like you:  accepting, kind, courageous, tenacious and SO much more.

The world would be a better place!

 

 

But to others you’re not invisible.  To others you are…

A smile that brightens up the gloomiest of days

A song in someone’s heart

The reason to live

Everything

…A beautiful, glorious and unique individual who is loved.  SO loved.

Worthy of being seen; of being given the opportunity to shine.

Child, you’re not invisible.  You never were and you never will be…not to the people who love and care for you.  Never invisible to the people that matter ❤

 

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Let that sink in

There’s a Facebook post that seems to have been doing the rounds recently.  I can’t recall word for word, but it goes something like:

Remember how hard it was caring for a newborn?  Many parents of kids with additional needs have been doing that for the age of their kids…Let that sink in.

And it got me thinking…

(Oh Lord, she’s thinking.  Get the sherry out…quick!…it’s going to be a long one!)

Because I suspect, for many people, it won’t sink in.  Probably ever.

How could it?

Reason being that if you don’t live in our world, or actually, even if you dip in and out, it’d be a challenge to grasp just how challenging life can be sometimes. Add into the mix the emotional aspect and I’d say it’d be really, really difficult.

However gentle reader, permit me an attempt to expand on this quote (probably quite poorly… apologies in advance) in anticipation of spreading a soupcon of enlightenment…although I’m sure some parents and carers can elaborate even more (and/or better!) than I’ll do.

Ready?  Good!  Okay, let’s go…

Close your eyes and cast your mind back to that time (or try and imagine) you were caring for a brand new, teeny tiny baba up to, say, toddlerdom.

(Erm…actually, don’t close your eyes, please…you’ll need them to read on!)

 

So, you (or your partner) have just given birth.  A day or so later, the hospital staff say it’s time to take your beautiful new arrival home.  How exciting is that?

• For a baby with additional needs, it could be weeks, months and beyond before it’s deemed safe to leave hospital…and it can be incredibly scary for parents leaving the safety of hospital.
• All the books and degrees in the world can never really prepare you for parenthood, can it? and becoming a parent to a child with additional needs can throw you into a frightening and unpredictable world.  Regardless of how exhausted you’re feeling, there may be no rest for a woman to recover from childbirth; she may need to develop some additional knowledge and skills extremely quickly *holds hand up*.  You become not only a parent, but a nurse and other roles too.  Medical professional visits outweigh those of family or friends – who may reluctantly visit out of duty and, on occasion, vanish into the ether; perhaps only to resurface in the good times. 
• Sometimes baby will never come home.

 

Carefully measuring and mixing up formula feeds; washing and sterilising bottles and whatnot; all commandeering your once tidy kitchen surfaces.  All that feeding stuff takes up a lot of room doesn’t it?  And what a bind it can be having to cart those feeds around when you go out. (Unless you were able to breast feed, obvs!)

• Sometimes mummies of babies with additional needs can’t breast feed…for lots of different reasons. In my case, it was because Hannah couldn’t swallow and needed to be fed by naso-gastric tube (a tube up her nose and into her tummy) and given I wasn’t allowed to stay in hospital with her, my body went on strike; resulting in no other option but to rely on formula.  Smashing *rolls eyes*
• Sometimes eating orally isn’t an option. The only way for someone to receive nutrition may be through a tube – either directly into a tummy, or like Hannah was fed. Tubes, syringes, bottles, ph strips to aspirate and test the level of what’s brought up (to make sure you’ve inserted the tube into the tummy and not the lungs before you start the feed…so you don’t drown your baby!), medical tape to stick the tubes on a delicate little face etc, etc and etc.  They all have to be remembered and packed when you go out. 
• Imagine eating out; having to cart all that stuff around…for years…forever. Imagine the stares you’re subjected to from other diners.  That can be hard to ignore.   
• Imagine storing box upon box of feeding equipment (plus all the other stuff) in your house. Imagine having to wash and sterilise heaps of syringes day in and day out.  Monotonous, but necessary. 

 

Nappies and changing whilst out and about.  Ugh, it can be difficult, can’t it?

• Up to now, based on a minimum of 4 nappies a day, and if my math is right, I estimate Hannah’s already racked up 13,140 nappy changes! According to the NHS, children are usually potty trained by the age of 5.  So, up to now, we’ve pretty much developed our own landfill site….and no, I’m TOTALLY NOT going to be pressurised into sluicing and scrubbing re-usable ones.  Trust me, I have more than enough to do!
• Those nappies can’t be purchased in the supermarket. They’re delivered in boxes every few months. You have to store them all. They take up a lot of room.  Running out of them causes problems…we can’t afford to run out of them!
• Any parent of a child (including an adult child) exceeding the size of a baby changing table in a public restroom probably has a number of fabulous options (I’m being totally sarcastic, btw):

(a) Lay vulnerable person on wet and filthy toilet floor to be changed

(b) Leave person uncomfortable and soiled until such time as they can be changed

(c) Go home early

(d) Don’t bother going out

(e) Change child somewhere in car – risking injury to changer or changee. 

(f) Change child in standard toilet – risking injury and/or contracting some kind of disease. Ew!

(g) Change person in public space and risk possible arrest for indecent exposure. 

• Not all disabled people can use a regular toilet. Not all disabled people can use a disabled toilet.  Some people need proper changing spaces with a bench and hoist.  Some people are reliant on continence products e.g. nappies, all their lives. Some people rely on catheterization or other forms of supported evacuation. 
• Trying to clean poo out of pubic hair with just a pack of wet wipes can be a challenge…FACT!

 

The illnesses; all those sniffles, vomiting and obscure rashes.  Those trips to the GP or calls to the health visitor. Those little preoccupations about sterilising everything and hoping people didn’t kiss your baby and spread their germs.

• How about caring for a child with a compromised immune system; where even something like a minor virus could develop quite quickly into a life threatening condition. How about sitting by a hospital bed, feeling completely helpless.  How about daily home visits from medical professionals; teams of people in and out of your home.  
• …or how it feels to love and care for a child with a potentially life limiting condition…or having no diagnosis at all and desperately needing answers.  
• Aspirating, massaging, stretching, suctioning, researching, sterilising, medicating, timing seizures, turning, bandaging and so on…and so on – just an average day for many a SEND parent.

 

Picking baby up, putting baby down, bending over the bath, lumping that changing bag and pram in and out of the car, carrying baby up and down the stairs.  On and on and on it goes.  Day after day.  Hard, isn’t it? All that weight.  It can certainly take its toll on your back.

• Try doing it with an older child or adult who uses a wheelchair or special buggy. With a person who can’t weight bear or who can’t understand or predict what’s happening.  Try picking a child up whose body weight doubles when they go rigid and spontaneously throw themselves backwards whilst you’re trying to place them into their car seat or carrying them.  Many of us worry about our backs giving in and being unable to care for our loved one.  We can’t afford that to happen. Our back-up care (pardon the pun!) is often either limited or non-existent.   

 

Prams, baby bouncers, baby baths, cute little potties, walkers, safety gates (Oh, the gates!), play pens, those drawer and cupboard locks designed to keep tiny exploratory hands out. Your house is probably unrecognisable, right?

• Nine years on and we still have gates. Three of them, actually!  And our drawers and cupboards still have locks….and those little finger trap things for doors…oh, and the socket plugs…and…erm, okay, I’ll stop now. 
• Changing beds, shower chairs, potty chairs, specialist seating, rollators, walking frames, specialist beds, hoists, stair lifts, ramps. Adapted bathrooms, wheelchairs, special buggies, monitoring equipment, perching stools, blah, blah, blah. Oh, we know all about unrecognisable houses! And when our kids get bigger, so too does the equipment, probably; whilst our houses stay exactly the same size.   

 

There’s no time for yourself.  Sometimes you feel like you’re stuck in the house.  You’re unable to have a wee in peace. Date nights are rare or non-existent.  You want to feel like an individual in your own right again. Do the shopping in peace.  Clean your house in peace.  Clean yourself! You want the kids to stop whining, stop asking for everything, stop fighting, stop bouncing off the sofa.

You.  Want.  Peace.  And.  Quiet.

• Yep. All that.  Probably. 
• But some parents would give anything to hear their child speak. They’d be delighted if their children whined or repeatedly demanded something…and they’d never tire of it.  (Erm…okay…maybe I would.  Just a little bit)
• Some parents would give anything to have their child move a limb or be able to hold their head up. Stepping on discarded lego or bouncing off the sofa is a dream away.  Immobility is for life, mobility can be lost. 
• Some parents are subjected to repeated and unpredictable violent outbursts from their children and some children harm themselves – biting so hard it breaks the skin, pulling out nails and hair, banging their heads. I can’t begin to tell you how heart-breaking it is to watch your child harm themselves. 

 

Remember peering into their cot or going into their bedroom just before you went to bed?  Remember checking to see if they were still breathing? Remember that monitor bleeping in the middle of the night and causing you angst?  Remember not having a dark bedroom because of the light from the camera monitor?

• We may rely on those monitors for a lifetime.
• We may never get to sleep in our own bed again; lying on a makeshift bed on the floor to keep our precious ones safe at night is what we may have to do now.
• Or we may lay in bed, anxiously counting the gaps between those shallow breaths.
• We may pray that our child wakes up in the morning; something that someone else may not even give a thought to, may just take for granted.
• We may have to feed or turn or medicate or suction our child in the night. Every single night.  Every.  Single.  Night. 
• We may never get a restful night’s sleep again.

 

So yeah, I’m sure we’d all agree that for most parents parenting can be hard; really, really, REALLY hard sometimes (if you take your role as a parent seriously, obviously), and that’s regardless of whether your child has additional needs or not.

We all know it can be exhausting too.

And for some of us, physically caring and advocating for our children may continue right up until our own deaths.   But whilst life can be extremely challenging, there are also memorable, magical times when it can be breathtakingly beautiful; the times our hearts could burst with overwhelming love and pride; the times we never take for granted; the memories we’ll cherish forever.

Please let that sink in too.

 

(Oh, I could’ve blathered on Ad Infinitum in this post, but I’d better stop now.  Bravo you if you managed to get this far!)

Thanks for stopping by

Until next time

Annie   xoxo

Alpacalicious!

There isn’t much opportunity for the residents of Broccoli HQ to do anything spontaneous these days.

Well, discounting stuff like spontaneously falling down, impulsively throwing yourself backwards with your eyes closed, biting and other generally hazardous shenanigans (btw, I’m referring to Hannah here, not me after chugging a few gin and tonics, just so we’re clear!).

No.  Referring to spur-of-the-moment stuff; I mean going to new places and/or doing new things.  Because, going ‘off piste’ (so to speak) can throw up all kinds of bother for a child, like Hannah, who lives with a rare genetic syndrome, autism and other profound additional needs.

So, seeing as we were about to embark on an adventure by going to a new place and doing a new thing *gulps*, I’d literally been preparing our girl for a few weeks…looking on you tube, showing her photographs, saying the word, signing the word, blah blah blah  (you get my drift, hopefully).

Oooh, I was REALLY excited about this!

…I had everything crossed that it wouldn’t be too much for Hannah;  that she’d not shut down, zone out and find it all too much to cope with!

Still, the deed was done; all was booked and organised and we were on our way.

There was no going back! *gulps again*

(Well, we could’ve gone back, if we’d have needed to.  That sounded a bit too dramatic.  But this was either going to be a really, really, disastrously bad idea…or a magical experience!)

 

So where did we go then?

 

Well, we went to the Lingholm Estate; about a mile away from Keswick in the Lake District to take a couple of alpacas for a walk…you know, like you do on a Sunday morning.

(For our friends across the globe *waves* the Lake District is a truly beautiful place, now a world heritage site; home of…well, erm…lakes (obvs!) and mountains, quaint villages, kendal mint cake and so forth)

(…and sometimes some rain)

So, given the inclement weather predicted, we packed the Broccoli HQ jalopy to the hilt with waterproofs and off we went to meet Annie (not me…I wouldn’t meet myself, would I?) – Our very lovely guide from Alpacaly Ever After.

I’d already given the ‘heads up’ about some of Hannah’s needs, so Annie knew which alpacas to match us up with.  And after a very informative and interesting briefing (including only stroke the neck…very important!), it was time to meet our first walking companion.

…and, for me, it was love at first sight!

Here was Ziggy; the Alpha male of his tribe. A light haired 4 year old, blue eyed beaut.  And I fell in love with him even more when Annie told me he was completely deaf, partly because Hannah has moderate hearing loss…oh, and blue eyes.  (That’s just about where the comparison stops though as Hannah can’t run up to 30mph or kick foxes like he can.  Erm…actually, she’d give it a try!).

And then came Inca.  He’s twelve years old, smaller than Ziggy with dark hair, but equally scrumptious.

We had to walk with two alpacas because they don’t like walking on their own.  And most parents of children with additional needs who use wheelchairs and buggies know that that could’ve been a bit of a logistical nightmare – with two alpacas on a lead and having to push Hannah around too.  However, for Annie, that wasn’t a problem at all and she very kindly stepped in and helped out.  Thanks Annie *blows kisses*.

Harnesses and leads on (for the alpacas, not us), Hannah tucked up in her special buggy, off we went around the estate where Beatrix Potter spent many a holiday…and where she was inspired to write some of her wonderful stories…and I can understand why! What an enchanting place it is along the banks of Derwent Water, where there’s all kinds of lovely vegetation and fairy-tale-like fungi and wildlife.

…and the sun even came out for us.  BOOM!

…although not too sunny in this photo

Annie advised that, naturally, Ziggy and Inca would need to get used to us, but a good indication to them feeling comfortable, would be that they’d start to eat (they have three stomachs…yes, THREE!…so they eat a lot.  Actually, I know of some humans that probably have 3 stomachs too!).  I’d guesstimate that Ziggy took a couple of minutes, Inca followed suit seconds later.  So that was a relief.

…and although Hannah didn’t join them by chomping on the grass and beautiful vegetation around us, it was evident by her eye contact and fascination and squeals of delight that she was entirely comfortable and a bit smitten too.

Phew! (all that preparatory work did pay off in the end)

Hey, if Ziggy doesn’t wear shoes, then I don’t see why I have to! 

And throughout our (totally accessible in a special buggy) journey, Ziggy and Inca had a good old chomp and scratched their undercarriages on their preferred trees (oh, and me…thanks Inca!).  Our boy Ziggy didn’t even flinch when Hannah stroked him and sneaked in a bit of a nip or two (actually, if Hannah ever nips you, take it as a compliment.  Once you’ve got over the excruciating pain).  Ziggy and Inca (and Annie) were very patient and made our experience a rather emotional (observing Hannah engage and connect so well with them) and a truly magical one.

I like you…so I’ll give you a little bit of a nip

An hour and a half later, we were back where we started and it was time to give Ziggy and Inca some special supplemental alpaca food and with a little support and encouragement Hannah also participated in feeding time…although some of it went in her mouth (no surprise there then!) and much of it landed in her special buggy…but that didn’t deter Ziggy from hoovering it up.

Om nom nom! 

Some more chats and strokes and photos later, it was time to say adios.  And so, with a heavy heart, we said farewell to our new furry friends who returned to their field to have a good old tustle with their other pals.

There’s much published about the various therapeutic benefits of animals for children (and adults) with additional needs.  And after observing Hannah with Ziggy and Inca, I’ve no doubt whatsoever that she’d benefit from being around these utterly glorious animals.  So will we be visiting again?  Oh, try and stop us!

…it’s just a shame Ziggy and Inca can’t come over to Broccoli HQ for a sleepover sometime.  I’m sure Hannah wouldn’t mind at all if they bunked up in her room!

The caption that kept springing to mind for this photo, was “I’m just a girl, standing in front of a boy, asking him to love her” (well hey, if Julia Roberts can say it to Hugh Grant!).  Hannah was seemingly rather infatuated. 

 

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

Until next time

Annie xoxo

 

This post is dedicated to Ziggy and Inca. 

Oh, and if you’d like to know more about Alpacaly Ever After, here’s the link.  Go check them out:

https://www.alpacalyeverafter.co.uk/

 

 

 

 

 

50 – grenades and glitter

 

“Well, can I just say, you don’t look 49” she said.

“Why thank you very much” I replied, whilst standing in front of her, completely naked from the waist up.

(Fear not gentle reader, you HAVE clicked on the right blog and not something…well…*coughs*…a little bit fruity!).

Btw, I don’t make it a habit of having casual chats with people whilst exhibiting my bare hooters; it’s not exactly de rigueur, is it? So I guess I’d better explain, hadn’t I?…

You see, I’d just had my annual mammogram (if you need one, I’m urging you to go.  I’ve had them for several years now.  It’s just a quick squish, don’t be scared) and was beginning the process of tucking everything back in its rightful place whilst agreeing that, no matter what the results, it could wait until after my 50^th birthday – which is in a few days’ time.

Yes, my people, 50!

FIFTY!

THE.  BIG.  FIVE.  O.

Ten x five = fifty

Five decades.

Half a century.

*gasps*

So, I’m now of the age where I’ll get targeted for all kinds of stuff:  coach holidays to the seaside, funeral plans, stair lifts, burgundy sheepskin slippers with Velcro flaps, great big thermal knickers that go right up to your armpits.

…Actually, the slippers and big knickers do sound rather appealing!

Even a few years ago I recognised that I’d reached that time in my life where many professionals I came across looked like they were on their weeks work experience from school and still got pocket money from their parents (perhaps they do!)

…or that I am, actually, of the age where I could be their mum! *rolls eyes*

…or, made huge gaffs by assuming people were the same age as me or older, when they were actually younger…whoopsy!

But still, people continue to comment that I don’t look my age.

Which is sort of nice.

But what does 49 or 50 look like, really?

Kylie Minogue…she’s just turned 50.  So’s her Neighbours on screen husband, Jason.  Celine Dion, Daniel Craig (ding-a-ling!), Naomi Watts (who my mate, Ian, says I’m the spits of…can’t see it myself, but hey, always happy to receive a compliment), my bestest pal Christine and my relative Jacqueline.  All 50.  All unique.  All lucky to be on the planet for this long.  Many people don’t get that opportunity.  My daddy was only 4 years older than me now, when he died.  So you won’t find me crying in a corner and rocking just because I’m 50!

Throughout my life I’ve struggled very much with ‘me’ (both aesthetically and internally), but since Hannah’s birth, these last nine years have shaped me to be who I am today – reasonably comfortable in my own skin; self-confident enough now to discard anything and anyone that drains me; no longer scared of complimenting myself; completely apathetic to those who dislike me (their circus, their monkeys); motivated; still quirky (apparently, thankfully) and much, much more.

…including (the most important one) being a damn good mummy.

Life has undoubtedly been a challenge.  One big, humongous challenge…which over recent years has made me sit back and evaluate how I’m living my life and I.  It’s thrown some blinding curve balls our way; bereavement and loss and pain and trauma and beauty and gloriousness in completely unpredictable peaks and troughs.

Almost a decade of grenades and glitter!

..but I’m a survivor!

And let’s face it, many of us don’t travel along this thing called life without a few bumps and bruises, do we?

So, I’m rambling again (apologies), for the purposes of this post – seeing as I’ve neglected the blog for a long, long time and have a few minutes to rattle something off – for what it’s worth, here’s my ten (very tongue in cheek) top tips for that youthful look of mine:

(bearing in mind that I am the parent of a child with significant disabilities!)

Ready?

Good.

Excited?

You ought to be…

 

ANNIES TOP TIP #1

Ensure sleep deprivation as regularly as possible. Sleep is overrated.   The beauty mags will tell you that 8 hours beauty sleep is required to maintain optimum health and a youthful look.  Ha ha ha ha ha…ha! *clutches tummy*

 

ANNIES TOP TIP #2

Moisturise…erm…*scratches head to recollect*…once a month…or…when you can remember…or when it’s sunny and you have leg dandruff.

 

ANNIES TOP TIP #3

And you can forget that costly wrinkle cream too.  They won’t shift those deep scowl lines and frowns caused by years of having to deal with really silly people, their agendas and the absurd things they say and do (or don’t do!)

 

ANNIES TOP TIP #4

Shower…quickly.  Very quickly.  There’s absolutely no time to languish in a bath!

 

ANNIES TOP TIP #5

Get your hair cut properly, say, twice a year.

 

ANNIES TOP TIP #6

And whilst we’re on the subject of hair, let’s talk mono-brows.  Just pluck at your face when you’ve had your fringe cut.  That’ll do.

 

ANNIES TOP TIP #7

…And beards.  Oh Lord, the beard!  Why did no-one tell me about ‘the beard’?  I know beards have been ‘on trend’ for several years now (time for a change boys), but that’s for the fellas!  You need to pluck that…or join a circus.  In fact, my friend Kevin has always maintained that I was stolen from the circus…he may have a point!

 

ANNIES TOP TIP #8

Forget manicures. WHO has time for THOSE!? Anyway, you’ll only chip those expensive talons lumping a wheelchair or piece of equipment around…and you need short nails for all those delightful nappy changes…hygiene and all that.  Get the clippers out, then file those babies down so they’re not sharp.  That’s enough.

 

ANNIES TOP TIP #9

Eat.  When you can remember to prioritise yourself.

 

ANNIES TOP TIP #10

Exercise…ha ha ha ha…ha!  No, don’t bother.  You’ve totally no time for that.  You get enough work outs as it is – lifting, carrying, running around.  That’s sufficient.

 

Hopefully you realise that, from the above, I have no magical remedy to looking younger than your chronological age.  And really, in the grand scheme of things, does it REALLY matter?

All I’d say is…

Be you.  Be comfy in your own skin.  Love your bumps and scars and wobbly bits all the other bits that we’re told we should cover up, shave off, plump up, cut off, pull out or whatever.  And try to love WHO you are, not what you look like and most definitely don’t make the massive gaff like I used to do of basing your perception of you on what others think. You are you.  Unique.  Lovely.

Try and like yourself…both inside and out.

…and if you can love yourself too, then you’re onto a winner!

Women, especially, use the “she loves herself” quip as some kind of catty, derogatory remark.  But actually, I think we’d all probably be better people if we lifted each other up and loved ourselves a bit more…and equally, were a little bit more childlike – accepting of everyone, funny, silly, perceiving life as one great big adventure.

…because none of us are getting out of here alive!

Btw, just to be clear, I’m not 50 in this photo! 

So, that’s all my people.  I’m off to celebrate life.

Happy Birthday Me…you quintastic woman, you.  You are TOTALLY splendid and you’ve worked hard to get where you are, so don’t let anyone tell you otherwise! ❤

Until next time

Annie xoxo

 

This post is dedicated to me…obviously!    

 

Happy Birthday Hannah – 2018

Hello Tiger,

Mummy’s been a bit lackadaisical on here, so I thought I’d write you a blog post, because – as if you didn’t know already – you’ve had another birthday.   Hope you don’t mind me sharing this with everyone (bit tough if you do though).

So, how did you get to nine?

NINE!

I know!

Now, I’m probably going to sound like a broken record here, but WHERE did all that time go?

It feels like only yesterday when we were here…

Your first Christmas

 

…and then here…

dragging yourself across the floor (you had mastered beautifully getting one arm out of your onesie) whilst wearing lipstick…because the speech therapist suggested it

…oh, and here…

your first day at school…not sat very lady-like on the school bus 

…here…

a gorgeous days photoshoot with our friend Janet Broughton…and you discovered dandelions…and that you could put them in your mouth! 

And we’re here…

not best pleased that mummy and daddy are in the photo

Blimey!

…in the blink of an eye!

But every single day (on your special day it was 3287 to be precise) I’ve never taken for granted that you’re here.

Never!

And those 78,888 hours (or thereabouts) have been filled with lots of different emotions and experiences.  Many of which I’ve learned a great deal from.

Hannah, I’ve said it before, but I’ll say it again…you, my precious one, have been THE greatest teacher of life I could have ever wished for.

And you unwittingly taught me ALL about unconditional love.

So, thank you my darling!

A while back, I was asked about all your medical stuff and then (refreshingly) was asked to describe YOU…Hannah…not the syndrome, not the autism, not any of the other stuff…YOU.

Where could I start?

How could I possibly sum you up in just a few sentences?

The thing is, I couldn’t.  I can’t.  Because you have so many glorious layers.  But for the old memory bank and for the purposes of this post, I thought I’d try and give a tiny pen picture of the YOU right now.

Ready?

Okay, let’s go…

You’ve blossomed this year – proving some of your harshest critics wrong again…that’s my girl.  Keep going kiddo!

Despite still being tiny, you still make your presence known.

You’re so inquisitive and feisty and tenacious and still have that remarkable zest for life.  Nothing stops you! And you see life as one great big adventure.  How wonderful.

…although you still scare me with your antics!

You’re funny, SO funny.

You’ve started to demonstrate through your play that you DO have an imagination…although I never doubted that.

You’ve worked hard this past year too – wearing your splints was so traumatic.

not a happy bunny 

Now, you’ll (mostly) tolerate them (you’ve mastered how to get them off too).  Well done you!

And now you’re a water baby – initially frightened to get in the school pool, you managed to get across the whole length.  Go you!

You give more eye contact.  You’re signing a little more and I love that you can sign ‘daddy’ and, on the very rare occasion you sign ‘mummy’, you call me ‘raisin’ instead.

I’m more than happy to be your raisin!

Hannah, you could teach a lot of people many important things, if only they got to know you.  You’re accepting of everyone regardless of their differences – you don’t discriminate.  You’re not greedy or demanding of anything…you’re perfectly content with what you get.  And the things you really need can’t be bought.  You’re not cruel to others.  Life is for living – it doesn’t matter if you’re messy, if you eat with your hands, whether your hair is perfect or if you just want five minutes with your frock over your head.

just having five minutes, mummy

You don’t aspire to be anyone else but you…and that’s just how it should be, because YOU are perfect just the way you are.

…and those pitying stares we get…well, we don’t need pity, do we?  I think there are plenty other people without disabilities who need it far more than us!

 

Well kiddo, I’d better wrap this up (apparently, in blogging land, you get sniffed at for writing too much…me? bothered? nah, not in the slightest! we do our own thing, don’t we.).

Hannah, you are loved.  SO loved.

Keep on shining.

Happy, happy, happy birthday little mouse!

I hope you enjoyed your day.

 

“And I’d choose you; in a hundred lifetimes, in a hundred worlds, in any version of reality, I’d find you and I’d choose you” (Kiersten White; The Chaos of Stars)

 

Forever,

Mummy

XXX

40 something sleeps

So, that’s it for another academic year in the UK.

The summer holidays have commenced!

And there’s no doubt there will have been lots of mascara run today and tissues crumpled as children leave to commence their next journey onto high school.

(When our time comes, I will need sedating and/or be found shaking and sobbing uncontrollably in a corner whilst swigging neat gin out of my handbag at the leaver’s assembly. Probably)

But a school doesn’t comprise of teachers alone.

…and whilst I’m so, SO grateful for all of their support, this post goes out to every single member of staff that helps Hannah in school and on her educational journey.

So, a huge BIG thank you from Broccoli HQ…

For feeding a hungry tummy.

For wiping tears away.

For your soothing words and gentle touch.

For your patience (not only with Hannah…but me too!)

For your genuine pride. It’s evident you care.

For acknowledging her and saying hello in the corridor…even if you’ve never worked with her before.

For keeping the building safe.

For keeping our kids safe.

For noticing when something isn’t quite right.

For your creativity.

For getting her safely to and from school…but not just that; for learning how to sign “good morning”, for letting her drive the bus (well, sort of), for your help, for your care and making sure she’s comfy and having fun.

For your thoughtfulness…that often brings a lump to my throat.

For those in the ‘engine room’ – the Big Bosses – better give them a mention…they’re watching me! (God, I hope they didn’t read the one about the time I went for a cervical smear and nearly chopped the doctor’s hand off!) *gulps*, the admin ladies and receptionists who keep the wheels turning. The people that greet us with a welcoming smile.

For agreeing to give new things a ‘go’.

For going out of your way.

For the fun!

For the messy times and the quiet times.

For getting to know her strengths and needs.

For believing in her.

For (mostly-ish) not letting her get away with murder.

For the massages and the foot spas – and that’s just for the School Governors! Kidding. (Totally jealous, btw!)

For structure and routine…and boundaries.

For ensuring that when I answer the phone, the first thing you (mostly) say is “it’s okay, nothing to worry about”

For the trips out.

For your persistence…and gentle persuasion.

For listening.

For co-ordinating.

For your honesty and openness.

For understanding.

For asking about her.

For the photos and messages that give me that much needed glimmer of her day.

For helping her to SHINE.

…and SO much more.

I hope those forty something sleeps are restful ones.

I hope the sun shines for you.

I hope you have fun and make some beautiful memories with your own children, your loved ones…or, in fact, just for yourself!

…and when those forty something sleeps have come to an end, she’ll be waiting for you…and no doubt waiting to cause a little bit (okay, a lot) more havoc.

They say it takes a Village to raise a child. So thank you for being a significant part of our village.

With love from Broccoli HQ xoxo

A Parents Prayer For The School Holidays

Hello God

It’s me again. Sorry to bother.

Well, as you’ll know, it’s that time. Doesn’t it come round quickly?

You’ll also know that I’m quite looking forward to these holidays…but I have a few requests. I know, I’ve asked quite a lot of you recently, sorry. But if you could just hear me out, I’d be ever so grateful.

So, first off, sunshine. We’ve had lovely weather in the UK recently. Any chance you could wangle it with Mother Nature that we get some during the school hols? Otherwise, as soon as the final school bell rings, we can anticipate a grey and probably quite soggy 6 weeks.

Grant us energy, lord. LOTS of energy, please. We’ll undoubtedly need it!
Preserve our backs – all that carrying and lifting kids and wheelchairs and whatnot really does take its toll.

Protect our sanity.

…oh, and the Debit Card!

Grant us creativity to make every day as fun as it can be.

Keep us from additional appointments popping through the postbox. We’re on our holidays!

Grant us a super power – the ability to part the sea of people when trying to navigate special buggies and wheelchairs whilst out and about. You know, a bit like Moses did. That’d be great! Actually, we’re pretty good at clearing a playground already. Watching other parents scoop their kids up and make a swift exit when we enter, anyone would think we’re contagious!

Bestow my ageing body the same dexterity I had a few years ago in order to dodge any flying plastic missiles (toys) aimed at my head.

Ooh, and a little lie in would be nice too. Especially on a day when we don’t have to see anyone or go anywhere. Yeah, I know, I won’t hold my breath on that one.

Watch over those Blue Badge parking spaces for those who ACTUALLY have a blue badge…and not those that are “just nipping in for 2 minutes” (it’s always 2 minutes, isn’t it?)

Help us maintain some semblance of routine for our poppets who need structure to their days.

Spare us a little bit of time for ourselves…say, to eat without someone (okay, Hannah) standing over our plate, scrutinising everything that’s entering our mouths…despite her just eating her own meal.

…or have a wee…alone.

Forgive us our trespasses if some of us wander into oblivion on social media whilst our kids are captivated by the Cbeebies channel. Yep, again, never gonna happen at Broccoli HQ though!

Save us from any trips to A&E – you know the drill…trampoline accidents, heads stuck in buckets, marbles up noses etc. and deliver our kids in one piece back to school when the 6 weeks are over.

…and lead us not into temptation – we may need to raid the biscuit tin when our kids aren’t looking!

Thanks, God.

It’s a big ask, I know. So whatever you could do for us would be much appreciated.

Talk soon, no doubt.

Annie xoxo

Two minutes

Dear Mr BMW driver

Firstly, I’d like to take this opportunity to thank you for the inspiration. It’s been a while (too long, actually) since I wrote anything and whilst I did have another topic in mind – but little time to sit down and actually draft something – I’ll be able to rattle off this letter to you quite easily. Really easily, in fact.

For some unknown reason, BMW drivers – much like people who drive white vans – like to attempt to adhere their vehicle to my rear bumper when I’m out and about with Hannah and, judging by the animated gesticulations and blotchy red faces in my rear view mirror, wish me to either get out of the way or exceed the speed limit, just for them. Humble apologies for anyone’s inconvenience, I am after all but a mere woman, driving her child around. My place is in the kitchen, obviously. However, if we’d met many moons ago, I’d have gladly allowed you to accompany me around the many race circuits I frequented – although I doubt you’d have been able to fit into my fire-proof gear or crash helmet – but I’m sure we’d have probably found something to accommodate the more…erm…how shall I put it?…rotund individual (may I be so bold as to suggest you go easy on the sales rep lunches in future?). Now this may come as a shock, as maybe you wouldn’t think by looking at me, however, I used to be quite partial to a hand-break turn around a hairpin bend and was rather a dab hand at pace notes too.

Maybe I could have taught you a thing or two. I KNOW!!! Who’d have thought, eh?

…and whilst we could no doubt have had a lovely ‘old skool’ chat about the double de clutch technique or the benefits of switching to slicks, I want to talk to you specifically about your parking…

Because, quite frankly Sir, It’s pretty rubbish!

Now I bet you love your car as much as you love your kids. That’s probably why you decided to park it RIGHT ACROSS TWO PARKING BAYS when you went to collect them. Not only that, I bet you love your car SOOOOOOOO very much that, as you didn’t want to risk it getting scratched, you decided to park it not only RIGHT ACROSS TWO PARKING BAYS but…IN THE ONLY TWO DISABLED PARKING BAYS AVAILABLE. Because, after all, you were only parking there “for two minutes” whilst you collected your children (or maybe it was the simple fact that you’re just too lazy to walk across the car park).

Two minutes?

Yeah, that’s what they all say, love. Trust me!

Actually, no, I’m wrong. They don’t all say that. They either glare in defiance, get a bit shirty (they’re not doing anything illegal after all and who am I anyway – the Disabled Parking Police?) or avoid all eye contact until they’ve quickly and silently shuffled their kids into the car and drove off, looking a bit sheepish until they get around the corner.

You’ve broke the mould, my dear…although apologising three times was a bit excessive. In fact, I didn’t even expect an apology. The only person you let down was yourself by clearly evidencing to your kids and all and sundry present that you really don’t care about disabled access…even if your intention was to stay for only for 2 minutes.

Now my friend, seemingly, that great big sign RIGHT IN FRONT OF YOU that says “PARKING FOR BLUE BADGE HOLDERS ONLY” or those TWO BIG YELLOW DISABLED SYMBOLS PARKED ON THE ROAD like this…

…aren’t big enough for you to see. In that case, I strongly urge you to visit an ophthalmologist at your earliest convenience. Although, quite frankly, if you can’t see either of them, then for yours and your childrens sake at least, maybe you ought not to be behind the wheel of any vehicle!

I never thought I’d need to use a disabled parking space. I once assumed that by now my child would be just like yours – able to walk ‘properly’, able to follow instruction, aware of danger, able to strap themselves into the car. But that isn’t the case. I don’t relish parking in that disabled space…but it’s there for a purpose – to make life just that tiny bit easier and a tiny bit safer. Through your action – by parking across those two disabled bays (I wouldn’t have bothered as much if you’d only parked in one!) just like the bloke with the massive car transporter does (but he’s a member of the glaring gang) – you took that away from two people who had a blue badge.

That’s just a bit sad, don’t you think?

It’s evident that you take great care of your car (although I’m guessing it actually belongs to a company you work for). I bet you’re really proud of it…maybe hoovering it out and t-cutting it on a Sunday afternoon until it gleams (you missed a bit, btw) and if you took as much care of your conscience as you did with your car, then maybe, just maybe, next time you think about parking in a disabled bay (or two!) you might think twice…and maybe park in the other parking bays instead. Perhaps.

Furthermore, you’d be going some way in teaching your own children some values, about what an inclusive society can entail and to acknowledge that these tiny gestures of consideration towards other people much less fortunate than themselves help to make things a bit easier. Plus, you’d be teaching them that walking – even a little – can be a good source of exercise.

I live in hope…although I won’t hold my breath.

Sincerely

Annie

GDPR

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The “They” Gang

 

Yesterday was #InternationalDayOfHappiness and, as a result, I posted a couple of things on Facebook.

 
…this post is inspired by one of them.

 
(Warning: Just so you know, I might get a tiny bit Mrs Ranty McRantipants…but I’ll try not to. You’re welcome!)

 

Now, us parents of children with additional needs tend to be subjected to quite a lot of stock statements. Here’s just a few…

 
Special children are sent to special people – I’m not special. I’m just me. Ordinary. Forgettable. Bland, even. Often winging it. Mumming as best I can.

God only gives you what you can handle – Really? REALLY!!!

You get to have a baby for longer – actually, I don’t particularly enjoy trying to change my eight year olds nappy when out and about, as there aren’t many facilities around that meet her needs. I’d also like to eat a hot meal in a restaurant, undisturbed, rather than supervising/supporting someone else to eat theirs – making sure she doesn’t choke or throw a plate at someone’s head!

…and, of course, let’s not forget one of my all-time favourites…

”…but they’re always happy”.

Every single time I hear it, it makes me grit my teeth a little bit too hard.

EVERY. SINGLE. TIME!!!

 

Here’s a story for you. Let me take you back in time a few years…

Imagine Hannah, her daddy and I out and about in the city – a nice lunch somewhere and a bit of a mooch was on the cards. Nice! But first, Hannah’s daddy needed to send his watch in for servicing. He was busy sorting that out whilst Hannah and I were just mooching around in the jewellers, looking at the lovely sparkly things and minding our own business.

“Doesn’t she have thick hair” an approaching shop assistant said, whilst doing her ‘eyeing-up-and-down-to-assess-the-potential-customers-net-worth’ look. “Yes, she does” I said, smiling. This benign conversation continued quite nicely for a couple of minutes, until the first faux pas was thrown “What’s wrong with her?”. Okaaaaay, I thought, I’ll forgive her that one. So trying not to twitch I replied as gently as I could, “Oh, nothing’s wrong. She has Cornelia de Lange Syndrome”

“Ooh, never heard of THAT one” she said (at this juncture, I imagine my eyes roll around in the back of my head. I clearly wasn’t engaging in discourse with a neurosurgeon!). She then proceeded to advise that someone she knew – a friends daughter or distant relative or someone (I forget. I’d switched off by then) – worked in a Special School with ‘these’ children and how enriching it was for her. *groans*

More sermon/patter continued. I glazed over even more, but made attempts at smiling and nodding, politely and in a timely manner.

“…but they’re happy aren’t they” she said.

It wasn’t a question. It was a statement that I’d already heard FAR too often.
I was having a good day until then, but this conversation just had to stop. The red mist was coming down…oh dear!

“They?” I said, rather abruptly. “Sorry, who do you mean by they?”.

A shocked look, quite a bit of stuttering and quick thinking later, she then said much quieter “Erm…the children” (feeble!)

“Oh” I said, with a smile that didn’t reach my eyes. I didn’t need to say any more. The look had said it all, really.

She silently faded back behind the lovely sparkly things.

Conversation over. Phew!

 

Now, don’t get me wrong, she probably meant well; much like most people who say this kind of stuff. And I’d never want people to be wary of speaking to me or approaching Hannah…scared of saying the wrong thing.

But this stuff, this utter drivel, these placations, these stock statements, REALLY DO NEED TO STOP.

It’s often a constricted narrative…a completely misguided assumption.

…and it drives us parents ABSOLUTELY BONKERS!

Believe it or not, it doesn’t placate us. It doesn’t make us feel any better AT ALL. It often infuriates us. We don’t want to hear any of it. It makes us even more tired than we already are. Plus, it makes our dentist sad…because we’ve gritted our teeth a bit too much.

(Actually, on reflection, it would’ve been rather amusing if Hannah had done her usual trick: Lure the woman into a false sense of security, look cute whilst flashing those beautiful blue eyes, hold her hand…then swiftly go in for the kill and, with jaws locking, bite down hard into the bone, maybe drawing a bit of blood. I could’ve responded quite smugly then by shouting above the chilling screams “OH, IT’S OKAY…SHE’S HAPPY!”)

 

So, that said, I’ll let you into a little secret, shall I? But get ready, this one will blow your socks off!…

 

“They” aren’t always happy!

 

*gasps* I know! Shocking eh?

 

But WHO are “they” you may ask?

 

Kids?

 

Actually, I don’t think so. I don’t think I’ve ever heard people referring to children in general as “always being happy”….and if that is the case, then they clearly haven’t had much contact with children!

No, I think the “they” are kids with additional needs…the “other” ones. The ‘sort of’ kids, but not ‘proper’ kids.

I think, often, sadly, kids with additional needs are defined solely by their disabilities – people only see a wheelchair, some AFO’s, a missing limb, unique facial features or hear a noise which isn’t the ‘norm’.

Then, ‘they’re’ defined by just that. That makes them “them”. Transforming ‘those’ children into ‘they’.

Actually, I think, that woman in the jewellers held the seriously misguided notion that Hannah and her peers just sat in a circle all day somewhere, just banging a tambourine….being all….well…’happy’ *sigh*

Now I can’t change everyone’s opinions. Sadly. However, I’ve changed since that time. I’ve continued to challenge when I hear the “They” comments. And I’ll continue to do so! Because “They” are our CHILDREN and ought to be seen as children FIRST and foremost. And by allowing these comments to continue, by just smiling politely, by just taking it on the chin and not challenging, I’m allowing this ideology to fester.

The utterly depressing (and rather infuriating) thing is that I’ve heard it not just from the general public, but also from people employed to work WITH children who have additional needs. Which isn’t very reassuring at all!

If you’ve got to know a little about Hannah through this blog, then you’ll know that Hannah isn’t ‘happy’ when she’s writhing in agony when her reflux flares up. That Hannah isn’t ‘happy’ when she’s self-harming. That Hannah isn’t ‘happy’ when she’s being pinned down so that some medical professional can examine her. That she possesses a whole range of emotions…JUST like any other child…and that’s BECAUSE SHE’S A CHILD.

Children with additional needs more often than not and for the rest of their lives have FAR more challenges than the average person could ever cope with. Our children are often subjected to more medical procedures, more pain, more obstacles. Our children may see the world differently to you or I…and that may be confusing and scary and impact upon their feelings and behaviour. Our children often have to see a plethora of people – poking, prodding, testing, treating, ticking boxes. Our children are more likely to live in poverty, are more vulnerable to abuse, and are one of THE most marginalised groups in our society.

 

Not looking too happy in her new AFO’s! 

 

So no. Sorry to disappoint. “They” AREN’T always happy.

 

But whilst Hannah might be perceived as a member of the “They” gang, whilst it would be impossible for her to always be happy, I’ll make damned sure she’s as happy as she can be.

Make no mistake about that!

 

So, that’s all for now, my lovelies.

Thanks for stopping by.

Until next time

Annie xoxo