Stop the clocks

Credit: unsplash

Well Tiger, change is afoot and I feel the need to document it. 

Whilst we’re all prepared, I’ve got very mixed feelings right now – flitting from optimism to dread – as tomorrow I’m having to let go of you a little…again. I’m having to trust strangers to take care of you and keep you safe.  I’ll be honest kid; I’m not feeling great about that.  Leaving you there will be another punch to my heart.  But we’ll have to give it a go, give them the benefit of the doubt.  These new people have big boots to fill. 

But I’d like the clocks to stop. 

After (what feels like) 20 billion months stuck with me, day in and day out, it’s entirely possible that you’ll embrace what’s ahead.  Then again, I know you can find change quite difficult.  So we’ll just have to dive right in and see how it goes.  But we’ll manage.  We’ll find a solution if things get tough.  We always do. 

You know, when you were born, we never did get those first few months like I’d expected.  Those ones where you’re cocooned, getting to know each other.  Just us.  Finding our feet. 

Instead, visitors invaded what should’ve been a peaceful time, and there were appointments to attend.  Too many.  Watching the clock, constantly.  Going here and there.  It felt very much like a tick box exercise much of the time.  Looking back, I’m not sure whether you really benefitted from any of it.  But there you go.  It happened. 

I wanted to stop the clock even then.  I wanted that so badly.

But, of course, it didn’t and the weeks, then months, flew by. 

I resented that.  I felt like I’d missed out on simply just being your mummy.  The focus was on you…but then again, it wasn’t; as if your syndrome dominated everything and every waking hour. 

But after 11 years, and during a bizarre, perhaps harrowing and heart-breaking time for citizens of the world – for many different reasons – I got my time with you.    

(We won’t go into the mass hysteria over toilet rolls and hand sanitiser.  But it happened.  I know!  Crazy, huh? *rolls eyes*)

I’ll be honest Hannah, I’m relieved you’ve been oblivious to what’s gone on.  I’m thankful I didn’t have to explain any of it to you either.  Rather selfishly, I’m grateful of a breather from the phone calls, emails, reports, letters and appointments too.  However, I’m frustrated that you’ve been deprived of the support you desperately need…and the services you’re legally entitled to. 

All you’ve really known over the last few months is home.  I know that’s been confusing for you, but I hope you’ve had fun.  I have…even though I’m quite tired.  Okay, understatement…I’m exhausted;  24/7 parenting for almost 6 months really does take its toll.  But that’s not your fault. 

Sure, there’ve been ups and downs.  That’s life!  But you’ve been a star.  I’ve really enjoyed my time with you. 

I still would like the clocks to stop; for us to stay as we are.  However, that can’t happen.  So, hopefully, whilst you’re having fun at school, I’ll get some time to do something I’ve wanted to do for some time…to complete The Book Of Broccoli.  Huzzah!  So, as an aide memoir, here’s just a few of my favourite memories of my time with you this year…

Dressing up as Professor Broccoli to raise that much needed CdLS awareness. 

Our little strolls around the neighbourhood – you pointing at things and saying (what sounds very much like) “what’s that?”.    Or you pointing at the ceiling saying (what sounded like) “wash the hat up”.  I never did quite grasp that one! 

Going a bit bonkers whilst dancing in the kitchen to Mister Motivator by Idles or watching you spontaneously nod your head and shake your hand to some other tune with a strong beat. 

Paddling and picnics in the garden in the summer sunshine. 

Watching you trying to teach Jade the assistance dog how to count.  She’s not quite got it yet, but keep trying, she might. 

Our afternoon siestas.  Lovely!

Learning how to cut your hair…and actually doing it.  Now THAT was a challenge!

…and having Daddy Broccoli spend over 15 minutes trying to get the hairbrush out of my tangled hair, because you wanted to brush it.  I thought we might have needed to chop it out, it was pretty entangled.  You did a great job, kid!

Painting with you for your CdLS awareness exhibition…and getting really, really (really) messy.  I’ll never get the paint out of the furnishings.  Not to worry.  We’re not proud.  But one day, we’ll make sure that exhibition goes ahead. 

And whilst you thrive on routine and whilst we still needed to stick to most of that, I didn’t need to watch the clock.  We went at our own pace, all of the time. 

…and that was so refreshing!

I want to stop the clock. I don’t particularly want to let go again.

But I must. 

Change is afoot, my darling.  I hope you’ll be okay. 

So, go and enjoy this new adventure.  Make a friend, if you can.  Have fun, lots of.  Behave! Try and learn something too – listen, watch, concentrate if possible.  Go show them what you’re capable of.

Shine, you’re good at that. 

…and when the school day ends, I’ll be here, waiting for you.

#CdLS #corneliadelange #SEND #SENDparenting #family #corneliadelangesyndrome #syndrome #genetics #education #love #disability #raredisease

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

I See YOU! – The 2020 update

I see you 2

Some years back now I wrote a post called “I see YOU”.  It turned out to be quite popular and seemed to resonate with other parents.

Since then, I’ve seen very similar posts shared across social media. And I’m okay with that, that’s good, because it supports the message intended – that us SEND parents aren’t invisible at all.

Also, wasn’t it Oscar Wilde who said that imitation is the sincerest form of flattery?

So, given the current global situation, I think it’s time for an ‘I see YOU’ relevant to what’s going on at the moment.

You ready?

Let’s go then…

 

It’s quite easy to feel invisible in our world.

I do, often.

There are also times when we may feel we go unheard. There are times we’re unable to do what we want or need to do…and that could be for days, or weeks, or months. There are times when we feel our children have been denied their liberties, deprived of things or of their freedom to just enjoy childhood…and that life really isn’t fair. There are uncertain times. Scary times. Some really, bone-crushingly, lonely times. Times when we wonder when, or if, things will change or ever get better.

(n.b. there are also some utterly glorious times too. Let’s not forget that!)

Many people across the globe, who don’t have a child with additional challenges, may have now had a tiny insight into some of our world. But as society opens back up, we – the SEND parents, parents of children with additional challenges – will continue to live much of that life, whilst many others resume a semblance of life before lockdown. Those experiences, those deprivations, may not be forgotten by the others, but as time goes on, they may pale into insignificance for many…but not all.

For those of you, like me, who’re continuing on this path, I want to let you know that I still see YOU.

I used to see you wondering how you’d ever get through the school holidays…and then I saw you worrying about how you’d get through lockdown or shielding. But you have…and you are…and you will, and for however long it takes. You know why? Because someone, so precious, someone you love, needs YOU.

I’ve felt your anxieties because your child has been stripped of their support and legal entitlements – whether it be medical/behavioural/educational/whatever and the detrimental impact that may have long term.

I see you agonising over all the hard work you’ve done to shield your child and felt your angst about the sudden ending of it.

I’ve felt your frustration (and maybe anger). SO much!

I see you making decisions best placed for your child, maybe refusing to bow to dictation. Conversely, I see those just starting out on their journeys, uncertain what to do for the best or maybe feeling pressurised by ignorant family or friends as to what they “should” do. They need to be empowered, supported in finding their own voice.

I’ve seen you trying so hard to maintain education and the work that’s been set. I’ve seen you at loggerheads with others, trying to quell the angst felt when the course work set becomes just too much to cope with.

I see your apprehension over the ‘declaration’ of the return to school for all children. I see your preoccupation, wondering what to do for the best. Conversely, I see those of you who’ve had no other choice but to send your child to school throughout all of this, because you’ve kept the country going. I’ve also seen you when you’ve needed to send your child into school because it’s the best for you…and perhaps them. There is no right or wrong in any of this. No-one ought to point a finger. We have to do what we feel is best.

I see you trying to support your child through the significant change of routine that was imposed on them…and preparing for the one perhaps yet to come.

I’ve seen you trying to have fun – making the 24/7’s seem less like groundhog day…and having to forego a clean and tidy home.

I see you every single day hoping your child doesn’t get sick…from anything.

My darling, I see it, I hear it, I feel it. Many of us do.

I see you thinking how you’d cope if one or all of you became ill, how that’d impact on your child, or wondering who (if anyone) would be willing to help.

I see you with that glorious baby bump; your sadness palpable at being alone during the appointments or scans. I see you leaving hospital and starting a new life…but in a world that feels as if even people you love could put your baby at risk.

I see you reading the perpetual stories about how it mostly affects the ‘vulnerable’…the ones with ‘co-morbidities’…and reading the hurtful comments. I see the impact that has on you. I feel it too!

I see you wanting them to wear the mask…because your baby can’t. I see your trepidation going out into the world again and wanting the strangers to do everything they possibly can…to help those that can’t. Stay away. Please stay away.

I see your good days and your not so good days – wondering when you’ll ever get a break.

I see your tears and frustration.

I feel your isolation even more than it was before.

I see you missing friends and family and deprived of the support you may’ve had.

I see you having to wait…and wait…and wait.

I see you longing for that hug.

Darling, I still see YOU. I’ve always seen you. And those of us who walk a similar path always will.

And if you ever begin to doubt yourself, remind yourself of the weeks and months that have passed and how you got through it…and how you helped get others through it too….and that you’ll continue to do so.

You’ve totally got this!

…and if you ever feel you haven’t, reach out, because one of us will catch you.

And we’ll remind you just how AWESOME you really are!  ❤

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Oink Oink

 

thumbnail_20190924_180103

My girl

So, Plan A:

Take a short rest from the blog, free up some time, focus on The Book of Broccoli, get it done whilst ensuring I was 100% available for Hannah during her transition (I’ll get to that in a bit).

Fabulous, I thought.

There was no Plan B.  I didn’t need one.  2020 was going to be MY year.  Oh yes, I was pretty smug about that.

What actually happened:

Exhaustion, illness, quite a bit of procrastination, then Sh*tmageddon Friday (see Facebook for that little beauty) and…oh yes…declaration of a global pandemic!  Whereby pretty much ALL my waking hours are now spent keeping our Floret away from breathing people, safe, educated-ish (when she’ll tolerate it), entertained, happy and as healthy as possible.  Any spare time I do have leaves me loafing on the sofa, oozing with lacklustre, flicking through social media, consuming anything calorific and avidly watching Bob Ross’s ‘The Joy of Painting’.  We’ve missed a few episodes as, a few weeks ago, when flicking through the channels, our TV guide announced “The Joy Of Pain….” (given it doesn’t show up the whole of the title of a programme, because we’ve got an old telly) and we thought we’d give that one a miss!   Sounded a bit dodgy to be honest, even though it wasn’t after the watershed.  It isn’t dodgy at all. It’s good, clean family viewing. Just so you know.

So, I guess The Book will have to wait…yet again.  But it WILL get done.  It has to.

However, I feel the need to write something today.  So whilst the poppet is being entertained for a while, as long as her attention isn’t fleeting (e.g.  mins) then I’m good to go.

What’s spurred me onto write, then?  Well, the aforementioned transition.  Because Hannah leaves Primary School next week *gulps back big, globby, incredibly sad tears before the floodgates open* and I feel the need to mark this significant occasion with a proper blog post – which’ll probably come in handy as a bit of an aide-memoire for ‘The Book’ too.

But where to begin?

I guess at the beginning, really.  Let’s jump back a few years…

*PLOP* (postman shoves a half crumpled brown envelope through Broccoli HQ’s door, addressed to The Parent or Guardian of…i.e. me)

So I was already annoyed to start with, given someone couldn’t be bothered to use my name.  This happens a lot in the world of SEND and it’s not on.  People may claim it’s professional.  It’s not.  It’s just lazy.

The letter informed me that there’d been a meeting and Hannah had been allocated a school.  Well that’s nice, I thought.  How kind of those complete strangers to discuss my child (a child they’d never met) without my prior consent, then make a decision about her future, without consulting me first.

Actually, I didn’t think that at all.  If I recall, I went quite ballistic and swore a lot.  My child wasn’t going to THAT school.  I would decide where she was going!

So, long story short, I researched schools both in and out of borough.  I trawled through OFSTED reports until my eyes bled (slight exaggeration, but it felt like they could’ve).  I visited countless schools – mainstream and special – and unashamedly interrogated Head Teachers.  I consulted with my professional contacts.  Whatever school I chose, it was going to be the best one for my girl.

The last school on the list to visit was ‘that school’ – the one that’d been picked for her initially (the one I hadn’t been consulted about).  I wasn’t looking forward to it.  In my head, I’d already chosen the school for Hannah.  As is my wont when aggrieved, I walked through the doors with a stubborn and oppositional mindset.  However, after spending a considerable amount of time with the Exec Head, going round the school and eyeing up the staff to see if I’d investigated them in my former career (that wouldn’t have been good!), I’d shrugged off the stubbornness.

This was the place for Hannah.

She started in the nursery there.  I was informed she was entitled to school transport too…a bus…with a driver and an escort on board.  Letting her go on that was another tough decision to make – alongside the strangers in nursery, could I entrust other people to ensure she was okay? Would she be safe? How would she cope? Etc, etc and etc.

Turns out, she coped beautifully.  No separation anxiety on her part whatsoever.  Without a glance back, she may as well have flicked me the V’s as she departed on the bus the first day, leaving me waving on the pavement and feeling rather teary and angst ridden, wondering whether she’d come home in one piece.

DSCF1045

Bye mummy!

She did return.  Obviously.

And oh, what fun she’s had since then!

Much of it has been documented on Facebook for posterity, so I won’t go on.

Sure, there’s been the occasional tiny blip. There always is.  Like the time when she almost chopped a finger off in a door – lessons were learned, no permanent damage done, thankfully.  But blips like that pale into insignificance at the love that she’s been shown and the support she’s had over the last few years.  And I cannot express how much that’s meant!

Most people I’ve come across who work in schools for children with additional challenges are truly special people.  Angels.  Dedicated, passionate, fun, creative, understanding…I could go on.  It’s not just about delivering lessons Monday to Friday, and that’s it.  It’s so much more.

Hannah’s been treated like a little individual in her own right.  Staff have endeavoured to ensure her needs have been best met.  They’ve tailored teaching to suit her.  Taken time to get to know her, how she ticks and what her triggers are.  They’ve taken an interest in her interests.  They’ve been creative.  They’ve listened and observed.  They’ve gone over and above.  They’ve taken her away on a couple of short trips…giving us a much-needed break.  They’ve worked tirelessly to coax her into the hydrotherapy pool…then celebrated when she did a length (more than likely being pulled along, but who cares, she did it!). They’ve stepped up when the utterly inept SaLT service failed Hannah….and listened patiently to me when I’ve had a rant about the utterly inept SaLT service.  They’ve washed hands and faces and fixed her hair for school photos so she didn’t look like a ragamuffin. They’ve kept her safe (*coughs* mostly.  See above).  They’ve given her a cuddle when she’s become upset…or a hug, just because she needed it when I wasn’t there.  They’ve taken time out of their day to come and watch Hannah in a Nativity.  They’ve greeted us in reception with a welcoming smile.  They’ve answered the phone and remembered who we are.  They’ve tended to her personal care.  They’ve watched out for ‘the poo face’ and acted promptly. They’ve not hesitated to get in touch when Hannah’s become tearful, because if tears come, they know something is seriously awry.  They’ve communicated with me and provided me with fly-on-the-wall accounts of her day.  She’s come home exhausted but content – always a sign of a good day.  They’ve shared their lunch with her, even though she’s eaten already.   They’ve nominated her for awards. They’ve plied her with broccoli…and ensured she had her daily flip-flop fix. They’ve celebrated Hannah’s achievements with us.  They’ve been a part of our Tribe for many years.

They’ve shown her love.  SO much love.

(That isn’t an exhaustive list, btw.  How could it be?)

…and I’m already grieving the loss of these people…for Hannah and for me.

So, without naming names (they’ll know exactly who they are)…I simply cannot thank them enough for what they’ve done for us.  They’ve truly made a difference.

(btw, these thanks also go to the drivers and escorts who’ve taken Hannah to and from school too!)

The people allocated to replace you will have very big boots to fill…and I’ll be surprised if they ever do!

Hannah hasn’t been in school since March.  Normally there’d be an opportunity to say goodbye properly, have that last cuddle, celebrate the years, have that little leavers disco (despite the fact that she’d probably spend the whole time not enjoying it because it’d be an overload of the senses.  But hey, inclusion and all that).  Unfortunately, a sodding pandemic and ‘Government’ (I use that word with derision) rules have put paid to that.  Maybe that’s a good thing for Hannah given I can’t explain to her that she’ll never be returning there.  But I feel she’s been completely deprived of the ‘ending’ we anticipated.  I too have been robbed of the opportunity to weep profusely whilst scratching pitifully at the glass of the classroom door, or cling onto the Exec Head’s leg whilst he drags me along, begging to be let back in for just another year.

Buddhist philosophy teaches us the concept of impermanence…that things change.  Nothing lasts forever.  But you know what? Whilst things do have to change, those memories Hannah’s beautiful teacher and the rest of the school staff helped to make and the unconditional and genuine love they showed to my girl will never be forgotten.  You can be rest assured of that!

I wish you all well for the future.  New children will come and go, I know.  But I hope, at some point when you’re least expecting, something will remind you and you’ll look back and recall that glorious, fun loving, blue eyed, tiny little broccoli girl – the one who caused havoc, the child who unwrapped all baby Jesus’s presents at the Nativity play, the child with the smile that could light up a room, the girl who energetically pushed a pram around with the speed of Usain Bolt – grazing everyone’s shins in the process – the child who embraced life like we all ought to – and I hope those memories make you smile.

I can’t say goodbye.  That would hurt too much.  The loss is simply too great.

So, instead, I shall repeat the sound that Hannah currently likes to make…the one that always makes her laugh…and just say…

Oink Oink.

xxx

 

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To be continued…

 

 

 

Hello you!

 

Long time, no see!

 
How you doing?

 

I’ve got a spare five minutes (it was a toss up – either talk to you or start tackling the ironing before I have to collect Hannah for an appointment…so, no contest really) so I thought I’d pop by, as I’m conscious that I haven’t written a blog post for quite some time.

 
My bad!

 
That’s because I’m trying (significant emphasis placed on the ‘trying’ bit) to write a book…The Book Of Broccoli – A book about our life since Hannah arrived.

 

The Book Of Broccoli

Credit: photofunia

 

 

And I SO didn’t appreciate how hard it would be!

 
But I’ve promised I’d do it…so I’m doing it.

 
However, life appears to be getting in the way of things at present (how rude!). So I’m doing bits and bobs when I have time/can focus/am not sleep deprived/and so on…and so forth.

 
…but it’s hard (did I mention that it’s hard?) and I feel like I’ve lost my voice a little and my direction…for lots of reasons.  I’ve made trillions of notes, typed thousands of words…even got a plan (which is unusual for me…I usually just wing it)…but still, I’m not feeling the lurvve right now.

 
Maybe I ought to just ditch the plan and keep on winging it. Who knows?

 
Ideally, I could do with a couple of weeks away (alone) from Broccoli HQ, solely to focus on my blatherings…erm…I mean riveting, informative and witty narration. But that’d be about as likely as Brexit getting sorted out (ooh, controversial!) or a unicorn knocking on the door and gifting me the winning numbers on the lottery.

 
Nevertheless, in true Special Mama style, I will persist and I shall get this book done.

 
Eventually.

 
So, dear friend, in the meantime; whilst I’m messing about procrastinating and whatnot, if you’re remotely interested in catching up with us, then please head over to our Facebook page (if you haven’t already done so) or, alternatively, feel free to have a look back at some of my previous ramblings.

 
…and I’ll try and pick up the blog as soon as I can.

 
Until next time (hopefully at some point soon-ish!)

 
Annie xoxo

 

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The 10 Year Challenge

I’ve noticed these 10-year challenge things floating around on the interweb recently and thought I’d use a similar theme for a blog post.

However, mine won’t be a “Ooh, look at us! weren’t we fabulously glamorous then…and we haven’t changed much, have we Social Media friends?….WELL??? HAVE WE???!!!” type of theme.

Ugh!

No, our life has changed.  We’ve changed.  Considerably.

These last 10 years have been a bit of eye opener…for lots of reasons…and not least because of a little girl who unwittingly brought along with her a life less ordinary.

So, here’s my version of the 10 year challenge…the then and now.  No glamour;  but plenty wrinkles, exhaustion, frown lines, a bad back, migraines and sprinkles of white hair (unsurprisingly, I’ve bypassed the grey!)

You ready?

Okay, let’s go…

 

 

Ten years ago…

 

I took life for granted

…and I certainly took sleep for granted!

I didn’t have to think about anyone else, except me.  I could nip to the shops, have a relaxing bath whenever, lie in bed until lunchtime if I wanted, drink wine and listen to music into the early hours.

The world, I believed, was my oyster.  Pretty much.

 

anne and mark 2008

Before we became Mama and Papa Broccoli 

 

Ten years ago…

 

I never knew how it would feel to long for those ‘firsts’ – that first eye contact, first smile, first tentative swallow of solid food, first roll over, first time sitting unaided, first wobbly steps.

And, oh, that first hug!  Blissful.

…and I would’ve never anticipated waiting years for many of them to happen!

I guess I never appreciated how patient I could be…when I had no other choice.

I took simple things for granted

 

Ten years ago…

I’d never seen the smile that could brighten up the darkest of days

I’d never felt so proud

My diary was never as full

…nor was my head!

I never realised who my true friends were

I’d never appreciated a random text message, or a silly meme or a “Hi” so much

 

 

Ten years ago…

 

I’d never had to clean up so many bodily fluids (or solids!)…or wipe away sticky handprints

I’d never had to change bed sheets in the night…or sluiced as many clothes

I’d never heard my washing machine spin so much

I never knew that bubble baths and getting messy and twizzing around in the kitchen with a t-towel on your head could be SO much fun!

…and I’d never left the house with yoghurt in my hair!

 

 

Ten years ago…

 

My heart had never ached as much

I believed everyone possessed empathy.  I was wrong, so wrong.

I’d never been bitten, or kicked, or nipped, or headbutted

I never knew what strength I had – physical and emotional

I’d never cried so much – with joy or despair

I never knew how capable I would become

I’d never been as tenacious or fearless…or more fearful

 

 

Ten years ago…

 

I’d never listened to so much conjecture

…and I’d never challenged as much speculation or poor practice

I’d never researched or advocated or trusted my gut as much

I’d never had to restrain a child who needed medical intervention

I’d never felt my heart break a million times over when a child was hurting

I’d never realised how helpless I’d feel when I couldn’t fix the hurt

…and I’d never wished that it was me who was hurting instead

I’d never wiped away as many tears

I’d never lain in bed, anxiously counting the gaps in a baby’s breath; willing them to take another

I never knew how the sound of a medical alarm could generate so much fear

I’d never prayed for a precious life to be saved

I’d never received so much life changing, heart wrenching, painful news

 

Ten years ago…

I never appreciated how much someone could long to hear a little voice say “mummy”

 

Ten years ago, I never anticipated my life being like this

…and I never really knew what unconditional love was all about

But oh, I do now! ❤

Pupil of the year award.JPG

Mama, Papa and Miss Broccoli  

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

Five years

five years

 

Blimey!

 
Has it been five years since I took a deep intake of breath and pressed the publish button?

 
Why, yes, I believe it has!

 
I have exhaled since then, honest!…probably disappointing a few people along the way. Ha ha ha!

 
Yes, my people, MKLB has been cluttering up the blogosphere for five whole years.

 
Who’d have thought, eh?

 
I anticipated just writing a couple of posts (tops) and that’d be it.  I thought no-one would find us, no-one would be remotely interested, and it wouldn’t make a jot of difference to anyone…but they (you) did, they (you) are, I hope…and it SO has!

 
Huzzah! *throws hands up in celebratory fashion*

 
That said, time and other commitments restrict me from writing as often as I’d like, and I have recently considered putting the blog on hold as I’ve (rather foolishly *rolls eyes*) gone and blathered to our lovely MKLB Facebook family that I’m writing a book!

 
…A BOOK!!!

 
…WITH PAPER AND WORDS AND EVERYTHING!!!

 
The Book of Broccoli – the title’s a work in progress, much like the rest at present.

 
You see, I’m tired of procrastinating (in my head) about writing a book and not actually writing THE book. Plus, other people have been suggesting it for a while, so I need to get cracking.  Pronto!

 
So, there’s no turning back now, I’ve said it…out loud…that I’m writing the book.  This year.  Hopefully.

 
Erm…No *shakes head vigorously* let’s be positive about this.  Not hopefully, DEFINITELY!

 
…and fingers crossed, someone, somewhere may want to read it.

 
…and if no-ones interested…well…thinking optimistically, then at least it’s stopped me procrastinating and we’ll recycle the paper somehow.  Actually, given all the scaremongering going on about the apocalypse of Brexit, then I suspect we’ll be able to reutilise the paper in the loo…or to heat Broccoli HQ!  #genius!

 
So, the best laid plan is to chip away at it at night or when I can.

 
Much like blogging, I haven’t a clue what I’m doing, even though I’ve made plenty notes already.  So, in true Special Mama style, I’ll be winging it.  But hopefully, it’ll be an informative and easy read (maybe even amusing at times too!).

 
So, blog was put on hold.  But then one of our lovely Facebook family, hello Mark *waves*, left a comment on Facebook after I’d announced my intentions, which left me with a lump in my throat (I’ve got one now just typing this!) saying he hoped I’d still continue with the blog as it kept him going through the dark times.

 
Sometimes, I experience those dark times too (I’ve had a tiny, temporary blip this week…probably due to lack of sleep) and I’ve no doubt some others caring for a child with additional needs do.

 
So how could I neglect the blog when someone leaves me a message like that?
Someone reads my ramblings and it makes a bit of a difference. And maybe, sometimes, puts a smile on somebody’s face, uplifts them…if only for a little while.  Perhaps something triggers a feeling of being less isolated, takes their mind off what’s happening, what’s about to happen or whatever.

 
One of the reasons why I started the blog in the first place was to help people feel less isolated.

 
So it looks like I’ll need to carry on blogging!

 
Five years on and anyone would assume I’d be proficient at blogging by now. Umm…clearly not so; something comes into my head, I write, press publish, job done. It’s not rocket science (thankfully!).

 
But I have learned some things along the way and I did compose a ‘Top Seven things I’ve learned about blogging’ blog post…but as my future posts will need to be considerably shorter than the ‘norm’ here’s a summary of that:

 
(n.b. I know it probably should’ve been ‘top five’…or ‘ten’ things I’ve learned…but I’m not one to conform).

 
Since MKLB was born, lots more bloggers have come on the scene; sharing their stories, knowledge and experiences.  How wonderful! With diverse styles, helping to educate, raise awareness of their lives and the challenges they and their loved ones face. If you have some time on your hands and are interested, go check some of them out.  Education and awareness matters.

 
Thanks to the blog and social media, I’ve connected with many people from all over the world – from our CdLS global family, some fabulous awareness raisers, authors and other bloggers too…hello! *blows kisses*, parents who have children with other rare diseases or additional challenges, professionals, grandparents, members of the general public or whoever is interested in learning more…and they’ve celebrated Hannah’s achievements with us…and maybe, hopefully, had a laugh with us when things have gone a little awry.  That support and connection, my people, is priceless! The internet and social media undoubtedly has it’s ups and downs…but it provides me (and others like me) the reassurance that we’re never alone – even if our journeys are different.  Life can be challenging, there’s no doubt about that. And some days, in our worlds, it can feel a little isolating; pretty stressful at times too.  But there are people out there…willing to share their experiences and give advice or offering you a lovely warm cyber hug, a high five, uplift you, or whatever.  Sometimes, it can feel like the world is conspiring against you, that people are ghastly, opinionated, judgemental etc. – whilst being completely ignorant to the challenges you face in your life.  But then a person you’ve never met before messages you on Facebook and asks if you’re okay, because they haven’t seen you post for a while.  A gesture like that can change your mindset; gives you a gentle poke to remind you that there ARE nice people out there who do notice that you’ve been a little quiet and are concerned about you.  Thanks Stacey!

 
I’ve learned that I continue to be grammatically incorrect and write too much (you don’t say!).  Rumour has it that blog posts are expected to be succinct…and I’ve no idea who came up with that law.  A chapter of a book isn’t necessarily brief, so why should a blog post be?   And if there are some rules, sitting in a dusty cupboard somewhere, then we (Hannah and I) won’t be adhering to them! You’re welcome *bows*.  I’m far more entertaining when I swear…being rather fond of an expletive or two! (my friends will happily vouch for this).  And I’ve learned that I’d gain a far greater following by effing and jeffing my head off (and trust me, I could…easily!) but sadly I can’t. Soz!

 
I’m so grateful for the support we get from our followers. I like connecting with them and we learn from each other.  Raising awareness of Rare Disease is incredibly important for me and I’m content to continue to take up a tiny part of the blogosphere, just doing my own thing, slowly chipping away at raising that much needed awareness.  I don’t aspire to write about what’s trending at the moment, I don’t compare myself to what others are doing, I’m not ravenous for accolades. I’m quite happy just ticking over as I am.  But I need to get the word out there about CdLS somehow…and that’s where social media comes in.

 
Ah, the powerful but fickle finger of social media! I’ve learned SO much about THAT! Facebook is great – I can interact with people, share information or snippets of shenanigans and photos, celebrate those joyous moments…or just have a bit of a moan. It’s great! I’m lazy on Insta and totally useless on Twitter, so have given up for a while on there…but Twitter, oh twitter! Now that’s where I’ve learned how superficial the world of social media can be. When I first naively started out, I’d get a notification that someone was following me.  Great, I thought, more awareness raising!…and I’d thank them, but usually get no response.  But then a knowledgeable someone informed me how this stuff works – first, apparently, you follow people; expecting them to follow you back…muting them so they don’t clog up your feed…then, before you quickly unfollow them, jump onto their followers and follow them…then unfollowing them after a bit too. Ugh! No thanks! Oh, and as if that didn’t take up enough time, to gain more followers, you’re advised to leave comments on loads of other bloggers pages…so that they’ll follow you and in the hope they’ll share your stuff.

 
That’s not how we roll at Broccoli HQ, so we’ll give all that a miss.

 
So, my initial mission has been accomplished; I know I’ve made a difference – to members of our global CdLS family and other parents of children with additional challenges, carers AND professionals – and that properly gives me the warm fuzzies. It really does! And when another someone we’ve not yet met (hello lovely Kate *waves*) puts this comment on Facebook: “our life is so much better with you and Hannah in it”…that, THAT, my people, makes me want to carry on doing what I’m doing.

 
How could I not?

 

So, I’m off to write a book! *nervously bites fingernails*

 
Thanks so much for stopping by.

 

Until next time

Annie xoxo

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Terms and Conditions

Or, otherwise entitled…

 

PACT-G

 

terms and conditions

Credit: Photofunia 

 

Once upon a time; many, many moons ago, my parents bought me a piano.  It lived in my fathers study and alongside the weekly piano lessons, I was advised that I was expected to practice…for 2 hours a day *gasps*

Yes my people, TWO HOURS A DAY! *shouts*.

When the novelty wore off (pretty quickly), the most attention the piano ever got on a daily basis was when my mother vigorously polished the life out of it with Mr Sheen – that’s furniture polish, btw, not a man.  Consequently, it was a very clean and shiny piano.  But my father then got fed up of it in his study and it went to live (hopefully happily) in the local pub; perhaps ending its days being sung around by swaying, merry patrons, slopping their beer on it.

A similarly swift departure occurred when my Beagle, Sam, disappeared (not to the pub, mind) whilst I was at school one day, only to go and reside with a farmer…allegedly! #poorsam

Now, let’s face it, I was a kid.  I didn’t want to waste two whole hours every single day in solitary confinement!  At that age (in the olden days) all I wanted to do was my own thing and play out with friends, whilst anticipating being subjected to my mothers wrath when I returned later with dirty, scuffed, patent leather shoes (you can’t buff those babies up with Mr Sheen!).

I mean, come on, who sends their kid out to climb trees and generally mess about play with patent leather shoes on??!!! *slaps forehead*

(Or if it was raining and we couldn’t be bothered to go out, we’d make vile smelling ‘perfume’ out of squashed up rose petals or something we’d surreptitiously pulled up out of the garden)

…apparently we were considered rather posh in those days having a piano and study and patent leather shoes and whatnot, although you’d never guess if you met me now!

So I never became the best pianist.  Nor was I a child prodigy.  Obvs!

But perhaps if aforementioned (spotless and glossy) piano hadn’t ended up in the pub, I may’ve frequented my fathers study as and when the mood took me and had a little tinkle on the old ivories from time to time.  Those little tinkles could’ve increased to longer, more productive tinkles…resulting in (perhaps) me committing in my own time to developing my skills; if only to play for pleasure, for myself…or whoever would listen.

It would’ve been prudent to allow me to learn the piano on my terms, rather than it backfiring – resulting in me developing a resistance to conform to this parental expectation.

Hindsight’s a great thing though, isn’t it?  And we can all play the smarty pants and critique others’ parenting styles, can’t we? And blimey, if I was given £1 for every time I’d called out the judgements or been proffered ‘advice’ by people who had no idea whatsoever about parenting a child with profound additional needs, then that’d probably pay for a Baby Grand.

Many (many!) years have passed since my shiny piano got the eviction notice and only recently I considered treating myself to another one (although I guarantee it wouldn’t get polished!)…however, I’ve got FAR too many other things, more important things, to be getting on with at the mo.  Maybe I will one day though.  Hopefully.

So, where am I going with this?

Well, the aim wasn’t to belittle the well-meaning intentions of my dead parents.  Not at all!  I experienced a privileged and mostly happy formative early life.

No, what I’m intending to lead on to is how we, as parents, have the potential to get things wrong from time to time.

WHAT?

A PARENT, MAKING BLUNDERS? (yeah, plural)

HOW.  RUDE.

How distasteful of me to suggest that!

We’re all perfect, right?

Erm…Wrong!

 

By imposing our own expectations/aspirations/whatever upon our children – regardless of them being well-meaning – it has the potential to impact on our children.  It’s not rocket science, it’s #fact

Case in point and the reason for this post – here’s my totally epic parenting gaffe and how I was guided to put it right.  It turns out I’d been doing this parenting malarkey a bit wrong! *puts hand to mouth in shock horror*:

 

 

Someone: Erm…sorry, PACT what?

Me: PACT-G.

Someone: *looks baffled* PAC…?

Me: PACT. G.  It’s P.A.C.T. Hyphen G.

Someone:  *looks baffled again* What’s that?

Me: It stands for Paediatric Autism Communication Trial – Generalised.

Someone: Oh *looks baffled…again*

…and then I undoubtedly proceed (quite poorly) to explain what we’ve been up to for the last 12 months.

 

(Kept that quiet, didn’t we? *winks*)

 

You see, we’ve been involved in a very important bit of research – the PACT-G Study – facilitated by the University of Manchester.  Oooh!  But now we’ve completed said research, we can let the cat out of the bag and tell you a little bit about it.

(n.b. no cats were actually put in bags)

Early on last year (I think) Hannah was (finally) formally diagnosed with Autism.  Given the lack of support available (you don’t say!), her paediatrician signposted us to the PACT-G study.  Happy to ‘have a bash’ at anything if it helps, I made a call to the University.  Given Hannah has Cornelia de Lange Syndrome too I was concerned we wouldn’t be accepted onto the study.  But we were.  Phew!

PACT’s initial aim (I’ve pasted and copied this bit) was “to improve the social communication of preschool children with autism.  Caregivers were coached, using video-feedback, to interact with their child using strategies that facilitated communication development in the child.  This approach was found to be very effective in increasing the quality of parental communicative responses to the child, which in turn, led to increased child-initiated communications with the parent.

PACT-G therapy retains these effective elements; but adds new features to test specific ways to increase the transfer of child communication gains into everyday home and education contexts. The therapy begins with the parent at home and parental techniques are integrated into daily routines and play to assist generalisation of new skills development in the home setting.

In addition, the range of adults involved in training is widened to also include education staff in school settings.  This extends the application of the intervention into the primary school years. To date, autism intervention studies have largely been limited to episodic interventions, usually in pre-school. However, communication skills continue to emerge and develop beyond the pre-school years and social communication skills in the early school age period are strong predictors for later development.  The developmental nature of autism thus argues strongly for a developmentally sustained approach to intervention into middle childhood”

(Source: http://research.bmh.manchester.ac.uk/pactg/AboutPACT-G/)

So, it seems those child development theories from people like St Ignatius and Aristotle (clever blokes) such as ‘give me a child until he is 7 and I will show you the man’ stuff is a load of old twaddle – in my humble opinion.  Because Hannah started the research when she was 8 years old.  We subsequently spent 12 months completing the programme…and we’ve had some pretty impressive results from it – evidencing in part that someone doesn’t just stop developing after they’ve blown out the seven candles on their birthday cake.  (Actually, Hannah has difficulty blowing out candles, anyway)

So stick that in your pipe and smoke it Mr Aristotle and Saintly person!

 

Probably midway through the study, I had a lightbulb moment regarding my epic parenting gaffe.  Hannah was engaging more and more with me when I did nothing; rather than doing what I’d done for the last 8 years – using every opportunity I could to try and engage her, help her learn new things, aid her development.

It turns out I wasn’t really helping.  My bad.  More like hindering; probably making her anxious or overwhelming her too much at times and bombarding her glorious little brain which needed to process everything in its own time and on her terms, her conditions.

But, mirroring my own parents, everything I did was with the best intention.

…and with love.  So much love.

I learned that I needed to rethink again my expectations, adapt my behaviour even more and how I interacted with Hannah.  I had to step entirely into her world (even though I thought I’d done so already).  Let her take the lead.  Let her guide me.  I had to forget those mainstream theories about play and interaction between parent and child.  Often, I had to sit back…and wait…and wait.

Initially it felt a bit of an ‘airy fairy’ concept.  At times it felt like I was doing absolutely nothing…which I was…and that was uncomfortable for me.  I wanted/needed for her to feel that I was there for her; despite being there already.  But as the study progressed, I saw my little girl begin to blossom.  Her communication has improved and so has her ability to concentrate more, and she can sit for longer on an average chair.  Yay!

And nowadays, I can be observed being dragged around Broccoli HQ by Hannah to get the things she wants.  I’m now regularly told to leave her bedroom when it’s bedtime – this is usually achieved by Hannah forcefully pushing me off her bed (she’s strong!) whilst she points to the door.  Rude!

I jest, but these are huge, massive, glorious achievements in our world and I’m happy to be pushed and pulled around, if necessary.

It’s been hard going, there’s no doubt about that. But I’m SO very glad that we participated.  I’ll elaborate further about how we did it in the next blog post which will include her telling her dentist off and a fabulous something to celebrate what she’s achieved so far.

 

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

Thanks for stopping by.

Until next time.

Annie  xoxo

Posted in Education, Miscellaneous, Parenting, Speech, language and communication, Syndromes/Special Needs | Tagged , , , , , , , , , , , , , , , , , , , , , , , , | 3 Comments

Cringe!

Or, otherwise entitled…

Fish, chip and ketchup confetti

 

Fistral1.jpg

…butter wouldn’t melt! 

I’ve said it many times (and I’ll undoubtedly keep on saying it!)…parenting can be hard.  Really hard.

Add into the mix some additional needs and your parenting role gets a WHOLE lot more challenging.

…and, as a parent, there can be those completely cringe-worthy times…say, when your child takes it upon herself to lift up your t-shirt in public (yep, got THAT t-shirt!).  Or, um, I dunno, is required to do a lovely drawing at school of what the family did at the weekend – said artwork is then completed and proudly presented to an aghast teacher on Monday who observes a stick mummy (or daddy…or both!) lay seemingly comatose on the floor whilst clutching an empty bottle of wine, whilst infant siblings happily tuck into a whole box of coco pops for their lunch.

Yeah, that would be pretty cringe-worthy!…good luck explaining that one, parent people!

(But let’s not forget that parenting can be magical and wonderful and funny and just utterly brilliant too!).

 

So, gentle reader, that said, permit me to regale a little (understatement) *coughs* cringey incident of our own that occurred this time last week.

Picture this:  The Broccoli Gang are spending some time at (yes, you guessed it!) Broccoli HQ Cornwall.  It’s a beautiful warm day (yeah!  I know!  In October!…it’s probably down to global warming and/or Brexit or something).

Let’s go for a nice long walk.  We can have a little trot on the beach and have lunch out too!  We said.

Good idea!, we agreed.

So, off we went; Hannah happily tucked up in her special buggy – making her lovely little sing song noises whilst enjoying making attempts to kick out violently like some tiny little martial arts warrior at any unsuspecting passers-by whilst wearing her very hard AFO’s (orthotic splints).  A slightly cringey experience, but manageable.  We just pre-empted potential contact with strangers limbs and ensured a rather wide berth from all who approached us, so no-one was injured.  Huzzah!

Long walk had, trot on the beach completed (and obligatory roll around in the wet sand for Hannah…whilst mummy scoured said wet sand for any dog excrement or jelly fish or sharp things or whatever…like you do!), it was time for a spot of lunchingtons (that’s lunch, btw).

It’s too nice to sit indoors.  Why don’t we get fish and chips from Rick Steins café at Fistral and sit in the sunshine so that I can also ogle at the lovely, lovely surfers?, I suggested.  All were in agreement of this rather splendid idea (well, just Mr Broccoli…about sitting in the sunshine…not the surfers!)

We grappled with small and rather spirited small, but heavy, child; freeing her from her special buggy and carefully placing her on a grown up bench – daddy positioning himself so that if/when she spontaneously and violently threw herself backwards, she would be safe and no little heads would be cracked open and subsequent emergency medical attention required whilst on holiday.  Fabulous!

Sat there, in the sunshine, eating together, was lovely.  We were just like (okay, sort of) any other family out there that day.  Granted, Hannah did eschew her fork and chose to eat with her hands; whilst occasionally rubbing her lunch into her eyes/ears/face/hair/clothes/the table/us/a passing dog/anything else…but hey, she was feeding herself and she was happy, so that was all that mattered, really.

By this time, other people began to congregate for their lunch or a drink.  The outdoor seating area was pretty much full by this time and a handsome young couple (possibly dating, not sure, but looked a bit ‘loved up’ = so probably not married, yet) sat behind Hannah. (n.b as I proceed with this lengthy discourse, please remember this beautiful, probably loved up, young lady with freshly straightened, long, lovely golden hair)

All was well with the world.

Perfect!

…erm…apart from me repeatedly having to bat away twenty billion screeching birds – starlings and seagulls mostly – who made extremely persistent attempts to swoop on us (especially Hannah who enjoyed waving her food in the air! *sigh*) in order to taste Rick’s finest cod and chips.

…they weren’t daft!

At this juncture, I can’t exactly say that I was entirely relaxed!

Erm…not even moderately, actually.

A while later Mr Broccoli assumed that Hannah was making signs that she’d probably had enough lunch.

“Hannah, finished?” he asked innocently.

Oh…ha ha ha…Hannah was most definitely NOT finished…not by any means matey…she was just getting started!  Don’t ask her THAT!  Big mistake.  BIG! (he’s not had the practice, is as quick as me, or possesses ‘the knowledge’ like I have!)

I held my breath in anticipation and in a split second, tiny hands delved into the flakes of fish/chips/ketchup combo and then arms were forcefully ejected backwards, spraying aforementioned loved up young lady’s long golden hair/the back of her jacket with fried potato and sticky red sauce.

Oh sweet Jesus and all the Blessed Saints!

KILL ME!

KILL.  ME.  NOW!

You’ve seen confetti thrown at a wedding, right?  Well, just imagine fish/chip/ketchup confetti instead.

Yeah.  I know.

All those birds that’d been staring and swooping at us knew they were onto a right winner there and then…flying food!  HOORAH!

…it was like a scary scene from a Hitchcock film!

There were birds EVERYWHERE!!!

Plus, they seemed to have multiplied tenfold in a millisecond.

They swooped.  Golden girl swatted (whilst accompanying golden boy hung onto his beer.  Priorities!).  I cringed.  A lot.

…and all I wanted right there and then wasn’t the ground to swallow me up, but a great big seagull – the size of a pterodactyl – to come and pick me up and plop me into the deepest, nearest bit of the ocean (preferably then a lovely, lovely surfer comes to my aid before I turn blue or a shark ate me, obvs)

CRINGE, CRINGE AND TRIPLE WHAMMY CRINGE!

Profuse apologies and much grovelling proffered by both TOTALLY mortified parents ensued….whilst small child cackled with great delight and held no remorse whatsoever.

Cringe again.

Thankfully, golden girl had seemingly noticed we weren’t an ‘ordinary’ family, so to speak – squeals, AFO’s and special buggy probably being a pretty good giveaway and so she graciously brushed herself off, smiling…SMILING!!!…whilst offering us a “no worries”.

I can safely say, not everyone would react like golden girl (who knows, golden girl may well have a family member or knows of someone with additional needs personally or professionally, so perhaps she understood).  No doubt there’ll be times when other people, uneducated people, narrow-minded people with little tolerance for or understanding of difference react less favourably.  But we’ll cross that bridge/deal with them when necessary.

So yeah, that was pretty cringey.  But in the grand scheme of life, no-one died, no-one was physically harmed, golden girls hair didn’t fall out, the world didn’t end and a seagull the size of a pterodactyl didn’t plop me into the ocean.

…it was just an average day for a SEND family on their holidays!

(On the plus side, what appeared to be the entire avian population of Cornwall had a lovely lunch!)

 

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

Thanks for stopping by.  Much appreciated, as always.

Until next time.

Annie  xoxo

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

Invisible child

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

invisible child

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 ❤

 

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

Let that sink in

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

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