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

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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

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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

For New Parents

 

Oooh, hello!

You found us…yay!

You know what?…I’m SO pleased you did!

Now, just so you know, I didn’t know what to call this post.  So the title (For New Parents) might not be too accurate as some of you may’ve just had a baby who’s been diagnosed quite quickly with CdLS (Cornelia de Lange Syndrome).  But others may’ve waited years for a diagnosis for your beautiful poppet and are now learning what that entails.  And some of you may still be searching…perhaps trawling the internet for any clues as to what syndrome your child may be affected by.

But whatever your circumstances, if you want to know more, please do come on in, I’ll put the kettle on whilst you make yourself comfy, then we’ll have a chat, shall we?

Okay, first, let me take this opportunity to congratulate you.  Not because you found us (well, maybe a little bit *winks*), but because you’ve had a baby – a glorious, unique, scrumptious little individual; as, perhaps, like us, in the days after your baby’s birth, you didn’t receive many messages of congratulations.  Perhaps people shied away, maybe not knowing what to say or do?

Darling, if this was you too, try not to take it personally, many of us have experienced that.

Now, seeing as you’ve dropped by, I’m going to give you some advice – hence the reason for this post.  Because, in the early days and months following my daughter Hannah’s birth, I trawled the internet, scaring myself silly, reading stuff (mostly research papers) that really didn’t help me at all.  I didn’t think I was asking for much; all I wanted was to learn about life with a child affected by CdLS, not what my child might not be able to do…not the guesswork stuff either.  And that’s partly the reason why I set this blog up in the first place.

I’m passionate about raising awareness for CdLS, I’m SO frustrated that CdLS gets little (or no) mention…anywhere!…and I’m committed (and will always be) to supporting other families just starting out on their own journey to help them understand that there can absolutely be life after diagnosis.

But, I’m no expert.  I’m only knowledgeable in how CdLS affects my child.   So, for this post I consulted with an AMAZING group of people – other parents of children (and adults) who’re diagnosed with CdLS, who have their own unique experiences and collectively we possess many, many years! – and these parents very kindly pooled some of their knowledge for this post, just for you!

So, without further ado, here’s some advice…from THE experts!

(Oh, but before you read on, here’s a nice cup of tea…fancy a  biscuit?…with chocolate on?…good, have two…and make yourself comfy…as we may be here for a while…we have LOTS to tell you!)

You ready?

Good!

Okay…let’s go…

 

Top Tip #1

First off, a pretty obvious tip is that you need to breathe – regularly and often! You may’ve taken a huge intake of breath when your child was first diagnosed and feel like you’ve never breathed out since.  Just breathe, my love, breathe!

Mindfulness meditation (sounds airy fairy…but it’s not, honest!) might help, as may talking or writing stuff down (but we’ll get to that in a bit).

 

God

Yes, you’ll probably hear a lot about God on your journey…

“God only gives special children to special people”…”God only gives you what you can handle”…blah blah blah.

Poor God.  God seems to get the blame for a lot of things.  I bet He (or She! – let’s not be gender specific here) is as sick as we are hearing this stuff.

But you’ll probably come across lots of well-meaning people who simply want to say something…anything…just to provide you some kind of ‘comfort’ – even if you don’t need comfort.  Just remember, they’re trying to be kind.  Grit your teeth, smile and move on.

Equally, you may be proffered advice by people who know ABSOLUTELY NOTHING; nothing about parenting a child with additional needs, maybe nothing about parenting even!, and certainly nothing about Cornelia de Lange syndrome and the impact that can have on your child…and you.  This ‘advice’ may be given whether you asked for it or not.  So, rather than getting all hot and bothered about it, it’s perhaps prudent to just switch off and imagine your eyes rolling about in the back of your head for a bit whilst they blather on.

 

A road less travelled

 “Right at the beginning I needed to know that the shock and crushing sadness would pass.  And it did, but it was ok to be feeling that too.  Someone told me that a road less travelled may be harder but can be a wonderful one.  After a while I learnt that no longer comparing to other children and worrying about milestones was actually incredibly freeing!  And that my son has his own little timeline and I’m so proud of him”

 

Their “own little timeline”…remember that quote, it’s important!

 

Diagnosis

You don’t need me to tell you that a diagnosis can be life changing for all of you in the family…but remember, that doesn’t change who your child intrinsically is.  Your child is NOT a medical diagnosis.  Your child is NOT a syndrome.  Your child is NOT a patient or a service user.  Your child is a CHILD – a beautiful, precious, unique and glorious individual in their own right.

“…the best piece of advice I have is something my hubby said after our wee boy was diagnosed…he just said it’s what he HAS, not WHO he is….xx very true”

 

“They are your child first and foremost and a diagnosis won’t change that.  It does help if you can find like-minded parents, so I would definitely advise to join groups as it is so lovely and comforting.  Enjoy them.  They are sunshine and joy.  Although there may be cloudy days, they will bring you happiness in its purest form”.

 

“It’s so easy to fall into the trap of saying I have CDLS child, no you have a child who happens to have CDLS.  The child is a person in their own right, anything else comes after.  My (child’s name) has no hands and only one leg.  I never ever see that side of him, unlike some who have walked into lamp posts as they were too busy looking at him and not watching where they were going”

 

As you may already know, CdLS can affect people in many different ways.  Like us, you may have already received a number of diagnoses for your child – heart defects, reflux, cleft palate, skeletal problems, or whatever.

…and it can be really hard hearing this stuff, can’t it?

And as your child develops, things such as self-harming behaviours or a learning disability may (or may not) emerge, so you may (or may not…remember, everyone’s different) get some more diagnoses. For me, new stuff can still hurt, but seems to get a bit easier as time goes on.  And once we’ve licked our wounds a little, we get on with our life…after all, there’s fun to be had out there! There’s nothing we can do to change another diagnosis, so we’re completely wasting time getting all gloomy about it.

 

Welcome to the world, baby Hannah! 

 

 

When there’s no definitive diagnosis, but you’ve been told your child may have CdLS…

I felt it was really important to find out what was affecting Hannah.  I needed a diagnosis – I’m from the forewarned is forearmed school of life; the more I could learn about whatever was affecting her, the more I felt I could help her.

We got the CdLS ‘diagnosis’ relatively quickly – just from the numerous ‘symptoms’ Hannah was displaying physically – her cleft palate, her pierre-robin sequence, her heart defects, her skeletal problems, her beautiful eyes.  However, it took years (about 8 actually) to receive a definitive diagnosis and determine which gene had changed. The most common gene that’s tested for any change is currently the NipBL gene, but Hannah’s was fine (typical! *tuts*).  So further testing was required.  Apparently Hannah has a gene change on her SMC1a gene which is on her X chromosome…it’s quite rare.  Only 5% of people diagnosed with CdLS have this gene change.

However, we’re not all the same and for others a diagnosis has never really mattered…..

“Don’t also forget the families that have never actually received a firm diagnosis.  It has been suggested that (child’s name) has a form of cdls or certainly along the spectrum but never received anything.  Half the time we just go with it and let her form her own way in life – she grows with confidence every day and amazes us with half the stuff she knows that we didn’t know she did.  It’s never really mattered to us whether we get a diagnosis or not – what will it actually change?”

Some parents like to receive a diagnosis in order to ascertain whether a particular syndrome can be hereditary – whether any future babies they have could be affected by the same syndrome or whether any other children of theirs carry the gene and, in time, could pass this onto their own children.

(n.b. As far as genetic research is aware right now, CdLS isn’t hereditary by way of a gene passing from parent to child)

…but whilst a formal diagnosis of whatever additional needs a child has can sometimes aid access to particular sources of support and services, don’t be disheartened if you don’t get answers yet.  If your child has a ‘Syndrome Without A Name’ and you’re in the UK, you could contact Swan UK for advice: https://www.undiagnosed.org.uk/

 

Time as a family

You’ll probably come across lots of different professionals who give you daily programmes to follow – feeding programmes, portage, therapy, speech and language stuff etc.  And that’s great.  However, it’s rare that these people actually converse with each other and they won’t draw up a realistic daily timetable for you to get all this stuff done.  So if you totted up all the hours in a day spent on doing all this, you wouldn’t even have time to go for a wee, let alone anything else!

Prioritise.

…but also make time for the important family stuff too…holidays, trips to the beach, tickles and giggles and cuddles and play and bubble baths and books and lots and lots (and lots) of fun.

Your child needs to be a child.  Make those memories.  Have fun!

 

Fear of the unknown

None of know what the future holds for us…and, in my opinion, that’s not such a bad thing.  Phew! *wipes brow* However, it’s natural for many parents to want to know exactly how their child will be affected by a disability.  But whilst the professionals involved in your child’s care may be able to give you some indication, no-one can predict the future.  Your child is a glorious, beautiful little individual in their own right, remember?

Maybe you’ve compared your childs development to other children of a similar age.  Maybe, like me, your heart has ached far too many times watching your child strive to do something that any other child does with ease.  Comparing isn’t helpful (but quite natural, so don’t beat yourself up about it) and an achey-brakey heart isn’t much use to you either.  When Hannah was 2 years old, she couldn’t sit up on her own and that was really upsetting…however, by around three and a half years old, she was doddering around the kitchen and I was wishing back the time when she was immobile and safer, rather than falling around all over the place (there’s no pleasing some people, eh?).

But Hannah was just on her own timeline; doing stuff when she was ready to.

Whilst you may feel despair at the moment, I can absolutely guarantee that when your child does something for the first time that you never imagined they’d do (or were told they’d never do *tuts again*), you’ll celebrate, you’ll tell everyone who wants to listen, you may even have a little cry.  It will be glorious!

(erm…I mean your child doing new stuff…not the crying!)

My darling, I hope this new journey of yours changes you for the better; I hope you embrace this slower pace of life. I hope you never take for granted how precious life is. I hope your child teaches you what life really is all about. I hope you look in awe at your beautiful child every day and they take your breath away at just how tenacious and marvellous and funny and characterful they are…oh, and maybe a bit naughty too…after all, kids are kids, remember?

If you’re feeling a bit stressed or scared right now, just take one day at a time.  And if, right now, that’s too much to handle, then just take one hour at a time.  Have faith, you’ve got this!

(oh, and make sure you take lots of lovely photos and videos as your child grows!)

 

Try and stay positive

It’s possible, that in the early years, there’ll be lots of focus from a variety of professionals on what your child can’t do.  Their role is often to look at ‘the problem’ and try and ‘fix’ it…but that can get you down.  It may feel like there’s very little attention paid to what your child CAN do.  Sadly, that’s just the way it is at the moment.  Please try not to despair, try and stay positive, you have enough to manage as it is!

If no-one else focuses on the positives, YOU can.

 

“Every milestone is so precious”

Someone once said to me “Hannah has all the world to grow in”.  They were right.  I’ve come across too many parents who seem to be in a rush or competition for their child to reach milestones…and that’s really quite sad.  Childhood isn’t a race! And nor is it any kind of marker to how they’ll be or function as adults.  Every child, regardless of whether they have additional needs or not, will develop at their own pace…our children just need some extra support to do so.

“Don’t be hard on your selves, it’s a journey, when you first get diagnosis its natural to be upset and have a period when you feel down and almost grieve to an extent but then you pick yourself up, and realise what a beautiful amazing child you have.  Always push them, never settle for the excuse of ‘well they have CdLS so can’t do that’.  We got told (childs name) wouldn’t walk and she walks/runs/scoots.  We never treat her differently to our others.  Every milestone is so precious”.

 

Looking on the internet

I was advised by a medical professional not to look on the internet.  So, guess what I did? Yeah, you guessed it…I looked on the internet at everything I could possibly find about CdLS *slaps forehead*.   I spent so much time on there that I used to make my eyes go fuzzy…and, like I said earlier, I scared myself silly!  Don’t be like me.

If you’re going to look on the internet, only look on reputable sites.

Here’s the links to CdLS UK and Ireland and the US sites.  They’re a great source of information:

CdLS US: http://www.cdlsusa.org/

CdLS UK and Ireland: http://cdls.org.uk/

“Contact the foundation, find other parents and enjoy the good times”.

 

Find your tribe

Friends or family may drift out of your life.  You have enough to worry about, don’t worry about this too.

You may need to find people who just “get” your life or are willing to learn more.  Find people who don’t add to your stress, but reduce it.  Find people who don’t judge, who you don’t have to justify or explain everything to.   Find your Tribe.

The internet is often a good place to find a Tribe – I know the CdLS UK and Ireland Foundation have a facebook page just for families.  There may be other sources of support in your country too.

There may also be groups or charities that you can contact where you can meet other parents and carers who have children with additional needs – maybe not children with CdLS (given it’s so rare) – but nevertheless, you may meet some utterly AMAZING families of children with additional needs who totally understand a lot of what you’re going through.

When you’re ready, go seek them out.

“…I’d say to seek out others in your position, the cdls foundation, and all the amazing people we’ve made friends with.  Learn to fight to be listened too but also make time for yourself to recharge”.

 

Grief

Many parents of children with additional needs go through the different stages of grief; denial, anger, bargaining, depression, acceptance.  Equally, many parents don’t.  Don’t beat yourself up about whether you do or don’t.  If you have a partner, respect that they may not react in the way you do…we’re all different.  Be kind to each other, support each other, talk to each other.

You may (or may not) grieve for the life you planned in your head when baby was on their way.  You may mourn the loss of them not following in your footsteps in a sport or art or career or whatever.  But remember, even if your child didn’t have CdLS, they may’ve not followed you anyway.  Our children are unique individuals in their own right, with their own thoughts, wishes and aspirations.

Channel that grief/your feelings positively; talk (see below), write it down, don’t allow it to become all-consuming and get help if necessary.

“Don’t be afraid to grieve or receive support if this is whats necessary to become amazing and supportive parents to your CdLS child”.

 

Talk

You’ll learn quite quickly who’s genuinely interested in your child and what you’re going through.  Steer clear of those who just ask out of nosiness/because they like gossip etc and those who glaze over when you begin to speak.  Equally, steer clear of those who pop up only in the good times.  They’re not your people, not your “Tribe”.

Choose your audience and your circle wisely.

If it doesn’t benefit your child or you, you DON’T have to explain anything about your child’s diagnosis with anyone.  Don’t feel obligated just to appease someone else’s agenda.

But there will be kind hearted people wanting to know more – even complete strangers who’re genuinely interested!

Seek professional help if you need some therapy.  NEVER be afraid or ashamed of seeking support.  Not only do you need to be physically fit to care for your child, you need to be emotionally fit too.  Sure, you’ll have down days, everyone does.  Don’t let those down days become all consuming.

If you have a partner, it’s important to talk to each other.  Share your feelings, concerns etc.

Talk to whoever you feel comfortable and safe with.  Don’t bottle things up.

…but I fully understand that sometimes we aren’t ready to or can’t talk about stuff to others.  The situation may be too raw.  In this case, maybe write it down, keep it safe.

If you have other children, make sure they have someone to talk to about how they may be feeling too.  This journey can also be difficult for siblings.

Don’t talk about your problems or worries in front of your child.  Be mindful that even if they’re non-verbal, aren’t giving eye contact or seem focused on something else, they may well be listening (and understanding) what you’re saying.  Protect them.

…oh, and regardless of your gender, it’s absolutely okay to have a bit of a cry.

 

Pace yourself

For us, almost every day in the very early months following Hannah’s birth, there were appointments to attend; audiology, paediatricians, ophthalmology, community nurses, cleft nurses, multi-disciplinary cleft clinics, surgeons, heart people, oh, I could go on and on….and on!

Now, by suggesting you pace yourself, I’m not suggesting by any means whatsoever that you don’t go to these appointments, after all, you and your baby/child may need all the support you can get.  But often, professionals and teams don’t talk to each other.  So, it may mean, occasionally, you get several appointments to attend on the same day/week.  Just ask yourself, are all these appointments manageable for me?  If not, don’t be scared of picking up the phone and re-arranging.

Running around like a headless chicken is not conducive to either good physical or emotional health.  You need to be fit to look after your child.

You may’ve had an immaculate house before your baby was born.  Now it’s full of medical equipment and aids and adaptations.  It may not look like it did before; don’t let that get you down.  As long as your baby/child is warm and clean and fed and all their needs are met, then the dusting or the ironing can wait another day can’t it?.  The aids and adaptations may not be aesthetically pleasing or blend in with your décor…but it’s there for a purpose…and it may not be there forever; your child may not need these things in the future.

…and, if you have a rather ‘boisterous’ little poppet, like we do, then be prepared for your fixtures and furnishings to get a good bashing!

 

Oh, and be prepared for some mess too! 

 

Get help

I mentioned talking therapy earlier.  But there’s other stuff too.  Practical stuff.

Help could mean someone accompanying you to appointments, doing your ironing (ask them to do mine while they’re at it, would you?), spending some time with your baby/child whilst you go and have a shower or whatever.

Find out who can help you with filling in forms and providing advice on things like access to support, education etc. You don’t need to do all this on your own.

Don’t ever be afraid of asking for help (I know it’s easier said than done though).

 

Look after each other

Maybe you or your partner (if you have one) or both of you, are going through a tough time processing the information you’ve been given about your child’s diagnosis – give it time, my love.  Life may not work out as you originally anticipated…but isn’t that true for many (or most) people at some point in their life?

Having a child with additional needs may possibly put a strain on your relationship.  Like I said earlier, make sure you share your thoughts and fears with each other.  Talking is really important!

Ordinarily, when you become a parent it’s expected that your life changes too; your priorities change, your relationship changes because there’s this other little person, so vulnerable, in need of your attention.  In this respect, you’re no different to any other parent.  However, you’ll probably have far more things to manage.  Help each other.

Don’t blame each other.  That doesn’t help anyone.  There is no-one to blame.  At one point, I asked myself “Why me? Why us? Why Hannah?”  Well, the simple answer is…

Why not us?

 

Sometimes you have to fight

“it’s a long fight to get the services you need and require.  You need to be forceful sometimes/most times.  The good days outweighs the bad.  Most doctors know nothing about the syndrome.  Our children will amaze us with what they can do.  Don’t be afraid to ask us other parents for advice”.

“Fight for ur child as where I am they don’t know anything about CdLS also enjoy the journey and never give up these children are the most amazing people ever and remember there is bad times but there is a lot of good as well”

“…you do have to fight for your children as others often think they know best, they often do not know much about CDLS and are making comparisons to other children.  You must speak with other parents as you will learn quite a lot from them, they know what you are going through or will be going through.  Deal with things one day at a time try not to get stressed and enjoy your child”

Most, if not all parents, of children with additional needs (regardless of their diagnosis) may have times where they have to fight for the services their children desperately need.  It can be challenging.  Be prepared to fight.

 

You have a name, make people use it

I’m often known as Hannah’s mummy, and that’s great.  But, partly because of that, at one point I seemed to lose my identity along the way.  Now, if someone phones and asks if they’re speaking to “Hannah’s mummy” I’ll respond by saying my name.  I’m not just the Parent/Carer of Hannah, I’m a unique individual in my own right…and I make sure people know it!

Don’t lose your identity.

 

Self care is really important

You’ll probably be told to “look after yourself” – but it’s not always that easy, especially if you don’t have many (or any) people around you to help out.  But please do try and take a little time out for you…when you can.

 

Write it down

You’ll probably have a lot of information to process.  Sometimes – especially when you attend an appointment that feels quite stressful – you may not remember everything later.  If you can’t get someone to go with you, take a note pad and write down what someone’s telling you – or get them to write it down.  Plus, you’ll hear a lot of big complicated medical jargonese, which may be hard to remember at the time.  Get whoever you’re seeing to write it down for you so you can take it away with you.

 

You’re not alone

There’s support out there…you may feel alone…but, trust me, you’re not.  Whilst CdLS is pretty rare, there’s plenty of us out here (maybe not on your doorstep though) who you can make contact with.

As I mentioned earlier, you could join a facebook group for parents who have children with CdLS  – here you can ask questions which may be answered by experienced parents who’re a little farther on in their journey than you are.  We’re a very friendly, supportive bunch!

Don’t ever be afraid of saying how hard it is, don’t ever apologise, don’t ever be ashamed of your child…and even on the darkest of days, remind yourself that you’ve got this.

…But if ever you feel you haven’t, reach out, we’ll catch you!

 

Enjoy your child

“Enjoy your child, don’t get lost in the whirlwind of medical tests and jargon but see your little one for the wonderful person they will become, it doesn’t matter what they can do it’s how they enrich your life that counts.  Nurture them as you would any other child and watch them grow in their own way and achieve their own little goals and finally fight for them and encourage them but don’t compare them, every child is an individual and contributes to this big bad world”

 

Enjoy your precious child.  You WILL have wonderful, memorable, magical, funny times.

 

 

Hannah prefers to be the only one on the photo #Diva 

 

 

HUGE thanks to: Natalie, Andrea, Carol, Samantha, Nick, Samantha, Sian, Delia, Lily, Heather, Vicky, Eleanor, Louise – amazing parents who made this post possible.  This post is dedicated to them, their children and all the other children, young people and adults in our CdLS family and their parents, carers and siblings.

Our journey is undoubtedly a difficult one, however, with you around, we know we’re not alone.  Thank you! ❤

 

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

As always, thanks for stopping by.

Until next time

Annie (and the CdLS family)  xoxo

p.s. If you’re a parent or carer to a child who’s just been diagnosed with CdLS, we’d love to hear from you!

I see YOU…(a re-blog)

Hello you!

Well, we’re a bit giddy at Broccoli HQ because we’re in the final round (again!) of The 2018 BAPS (Bloody Awesome Parents Awards) in two categories. TWO! – Yay! Go Us! *does happy dance*

WHAT. AN. HONOUR!!!

 

Especially as this year (the second year of the BAPS), there were TONS of nominations of fabulous SEND bloggers.

Now, given the categories we’ve been placed in, my last couple of posts have been a bit serious and don’t actually reflect what I’m capable of writing. So, I thought I’d re-blog one of my most favourite posts “I See YOU” – just in case you’ve never seen it before I need to tell you it’s a bit of a long one (you don’t say!) so you’ll need to get comfy and maybe get yourself a cup of tea…and biscuits – but it’s one I’m extremely proud of and, regardless of a child’s diagnosis, pretty much sums up some of the feelings and experiences of lots of mum’s who have children with additional needs.

Believe it or not, I do actually possess a modicum of intelligence and, whilst ordinarily I’d never say “never”, I’m confident we’ve absolutely no chance whatsoever of winning a BAPS Award *gets violin out*, however, in true Special Mama style, we don’t give up easily.
I’d absolutely LOVE to get an award…I’d be over the moon and very, VERY proud! (It’d also be THE best birthday present ever…I have a very significant milestone birthday coming up this year…but I’m not telling you how old I’ll be…you’ll have to guess *winks*). Plus, more importantly, it would help to raise the profile of the syndrome that Hannah’s diagnosed with – Cornelia de Lange Syndrome – a syndrome that gets no press whatsoever, anywhere!!! And our CdLS children, young people and their families have lived in the shadows for FAR too long…so this would go some way in helping us to raise awareness – something we’re passionate about.  But, this will definitely be the last year I ask my wonderful followers for their votes as, whilst it’s a bit of fun, I don’t think it’s fair to keep on asking.
So, if you’d be kind enough to give us a little vote, here’s the links to the two categories that we’ve been placed in. Voting is really simple.  Honest!:

BEST PRACTICAL SUPPORT FOR FAMILIES CATEGORY:

http://www.myfamilyourneeds.co.uk/baps/practical-support-for-families/

MOST ENTERTAINING BLOG:

http://www.myfamilyourneeds.co.uk/baps/send-with-a-side-dish-of-humour/

 

 

 

So, without further ado, here’s I See You.  Enjoy!  Annie  xoxo

 

 

I See YOU…

Or otherwise entitled…

For my fellow Special Mama’s (but please don’t let that stop you reading on)

Sometimes, as a Special Mama, it’s very easy to feel invisible. Sometimes, it’s like you’ve lost your identity and the person you were, before life changed forever.

You may now never get the opportunity to tut in scorn (but inwardly smile, because you know you’ve still ‘got it’) at builders or tradesmen in vans who whistle as you go by. Well, I don’t anymore, that’s for sure. Let me know if you do and I’ll be proper jealous!

Sometimes, or often, in fact, you may not feel listened to or understood.

Occasionally, you might not remember the last time you laughed.

You rarely get the opportunity to get dressed up – jeans and comfy clothes for lifting and carrying and generally messing about on the floor are your regular attire. Shopping for nice clothes aren’t on the agenda – why bother? – They’ll only get ‘mucked up’ lugging wheelchairs and special prams in and out of the car…and you rarely go anywhere nice to get dressed up anyway. Hair that’s easily tied in a ponytail is typical, because trips to the hairdresser aren’t as often as you’d like.

You’re constantly juggling life…and sometimes it seems relentless and unproductive and downright stressful and you’re exhausted and have no time for yourself and, it’s just…well…just very, very rubbish sometimes.

I’m not selling this Special World of ours very well, am I?

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

Ah well.

But equally, there are truly beautiful, magical times in our lives.

Like times when your child does something for the first time that you never in a million years imagined they would do:

That first hug.

First eye contact.

First steps.

First and, perhaps, only word.

First smile *melt*

The first time your child is able to hold their head up independently or breathe on their own or swallow.

Huge, MASSIVE things in our world.

All things that anyone else might just take for granted and expect that it’ll just happen when the milestone books tell them it will.

But we don’t. We don’t take anything for granted. We cherish those times, because time is extremely precious in our world. We celebrate those times. We mark them down in diaries and share our joy on social media or with anyone who’ll listen.

But sometimes, as Special Mama’s, we forget about ourselves. Our identities may get swallowed up…and, because we have more important things to contend with, we sometimes inadvertently allow that to happen.

For instance; when we answer the phone (and boy, do we get LOTS of calls and correspondence) and the caller asks “Is that Hannah’s mummy?” (obviously, add your own child’s name there, not everyone’s called Hannah), we say “Yes, it is”. When actually, what we could say is…”Yes, this is Annie” (again, obviously, put your own name there, otherwise, they’ll think they’ve got the wrong number and hang up!). It’s not being impolite. Your job as a Mama is immensely important, but so is your name, so is your OWN, individual and unique identity.

So I’m here to remind you…Yes, you, reading this (if you’re a Special Mama, that is, obviously!)…that I see YOU.

You’re possibly the cog that keeps the wheels turning in your family. You may have a wingman (or wingwoman) – a partner, husband, mother, friend or whoever, who’s there by your shoulder, providing invaluable support. But ultimately, YOU are the professional in your individual child’s needs. Probably no-one else knows what you know…and sometimes, it can feel a little lonely.

You’re a Special Mummy. But in addition, the other daily hats you need to wear include being a teacher, therapist, nurse, PA, driver and SO much more.

But you’re also an individual in your own right…and a precious one at that.

I know that you’ve probably (and may still) trawl the internet looking for answers.

I bet you’ve read and can recite and have ascertained everything there possibly is to know about your child’s condition or are still searching for those answers.

I know you’ve sat by your child’s hospital bed and probably pleaded to a Higher Being for help. I know you’ve anxiously paced hospital corridors so much you’ve worn a groove in the flooring. I know you can carry out some medical procedures far more proficiently than someone with a medical qualification.

I know you have a constant battle fighting for the services and equipment in order to meet your child’s needs and you’ll have times where you’re wading through a mire of endless red tape, and that, in itself, is exhausting.

I see YOU…

I see a mum who wants the best for your child, no matter the challenges and sleepless nights and worries and heartbreak it brings for you.

I see a woman, trying to be all things to all people, stretching herself to capacity.

I see the mum trying to do her very best navigating her way towards an unknown destination.

The mummy who relentlessly carries out the same tasks and therapies day in and day out, because one day, something good may come of it.

Sometimes I see someone who’s so exhausted that it’s hard to function. But there’s no lying in bed in the mornings (or even through the night), you have to get up, even if you don’t feel like you’ve the emotional and physical energy to do so. Because someone, extremely vulnerable, is totally dependent on you.

I see someone who puts their child’s needs above their own and anyone else’s.

I see a woman who just wished that time would stand still…for lots of reasons.

I see a group of intelligent, articulate, empathic women; not sisters by blood – much deeper than that – who just ‘get’ each other. They cry together, they laugh together, they have a jolly good old moan together, they discuss naked footballers together (sorry, private joke there, but they know who they are…dirty, dirty girls!…nothing to do with me, honest!), they celebrate together and consult with each other and pool their knowledge.

I see you, soothing your child when they’re going through something you feel utterly powerless to control. Something that you wished, with all your heart, that it was happening to you instead. I know you’d take away the challenges and pain in a heartbeat if you could.

I see you worrying for the future and what’ll happen when you’re not around.

I see you in a waiting room, looking pale and anxious, trying to hold it together.

I see your passion in sharing your knowledge and experiences and educating people about your child’s condition through your blogs and how this affects your lives. I see you striving for inclusion in a world that isn’t often very accepting.

I see and listen to you discussing the trials and tribulations of friends or family members, who simply just don’t understand and dip in and out of your life when it suits them or who just don’t bother to send even an occasional text and ask how things are – out of sight, out of mind!. In addition, there’s the equally tiresome people who judge, who stare, who make comments that are hurtful. They all add to the angst and stresses of your life.

I see a mum who tries hard to comfort and explain to her child why they can’t do the things their peers may do.

I see a woman trying hard to raise enough money each year to pay for private therapies and equipment, because there’s nothing forthcoming from our diminishing NHS.

I see this amazing, creative woman, constantly thinking outside the ‘box’.

I see you and what you do. However, there’s SO much more to YOU and that’s easy to forget sometimes…

I see your quirky (and sometimes wicked) sense of humour…your ability to laugh even at the most frustrating of things – like services not being available because of cost implications or incompetent or rude people who try to belittle you…but who often fail!…YOU GO GIRL!!! *High five*

I see YOU.

You – a remarkable, funny, beautiful, strong, capable individual in her own right.

Someone who has history. The girl who laughed and played and studied and maybe got a career. Who may’ve gone to College or University, got drunk, lost her shoes somewhere, went skinny dipping with a beautiful Cypriot boy she hardly knew, gazed up at the stars on a warm clear night, fell in love, fell out of love, flirted and played and danced carelessly in bare feet and was utterly, utterly stupid sometimes.

I see a sensitive, loving, caring woman whose hard exterior carefully conceals the constant hurting inside. That hurt that she daren’t allow others a glimpse of, because if she does, she’ll show her fragility. And a woman who has wept alone in the shower for her baby and her situation. But every day, she gets up, gets dressed and faces the world head on.

Remember that carefree, sexy young woman with shiny skin and glossy hair who thought the world was her oyster? That was you, that still IS you…but you’re older (and perhaps, hopefully, a little wiser) and carrying some battle scars – emotionally and physically.   Wear them with pride, my love. You got through it. You’re tougher than you think.

Darling, don’t ever forget who you are and who you were and who you can be…even though it’s easy sometimes to forget and lose ourselves in this world of ours. Please don’t ever say “Oh, I’m just a stay at home mom” or “I only work part time”. There’s no just or only about it. You have been blessed with the most important and full time role in the world.

We’re shaped by our experiences and the people who cross our paths – the good, the not so good and the idiots. Learn from them.

I want you to know that I admire you…and sometimes, even if I don’t say it, I (and many others around you) might even love you just for being YOU.

This journey we’re on is a tough one. Don’t ever be afraid of saying that – even if no-one wants to listen. No-one can imagine what it’d be like from reading a book or observing 15 minutes of your life or getting a degree or having a professional title unless you’ve lived it and felt it in your heart – 24/7, 365 days a year, just like you do.

Be proud of who you are and your achievements and your courage and tenacity.

And even on the darkest of days, just remind yourself to keep going.

Have faith.

This day will pass.

You’ve got this.

…but if sometimes you feel you haven’t, reach out to us…we’ll catch you.

 

So, that’s all for this post, my lovelies.

Thanks, as always, for stopping by.

Until next time.

Annie xoxo

This post is dedicated to all my fellow Special Mamas ❤ 

STOP!

 

 

I need to try and get up shortly, make myself look almost human, but hop in for a minute, let’s have a chat *pats duvet in inviting manner and moves over*.  Oh sorry *gathers mountain of tissues (ew!)…and sinus spray…and third of a tub of vicks menthol rub/packet of paracetamol. Then throws tepid hot water bottle on floor, just missing empty bottle of lucozade*.

This has been my ‘sanctuary’ for the best part of a week.  My bed.  My sick bed actually *coughs deeply in rattly, chesty manner*

God, I’ve been poorly!

In fact, it was probably when Hannah was quite tiny – the year I came down with two different strains of flu in less than 3 months – since I’ve felt so rotten.

So bad, in fact, that my body sent me a very clear message that I had to stop.  Stop looking after Hannah.  Stop moving.  Stop…well…everything.  Apart from breathing, obvs!

It was on the cards that I’d get it.  My mum, who possessed a sharp wit and was rarely crude, would probably have said I’d been “running around like a blue arsed fly” for far too long (do blue arsed fly’s actually run around?) and seemingly life needed to give me a bit of a wake up call.  A bit of a kick up the derriere (again) to remind me I’m not invincible.

I just couldn’t keep running around like I had and not suffer the consequences.

Hannah’s expertise for coughing and sneezing RIGHT IN MY FACE the previous week had been exemplary.  If there was an Olympic medal for such a skill, then she’d have been awarded Gold, every time!

My child; my generous little harbourer of ALL things germy, had kindly incubated this bug-thing and then passed it onto me, seemingly with quadruple the strength.  And whilst she’d bounced back from it within days, this thing well and truly floored me.  So much so, that I couldn’t move for fear I’d pass out.  I couldn’t sleep, I couldn’t eat and I certainly couldn’t endure any more re-runs of Escape To The Country from 2009! All I could do was just lie down, head swimming and ache and sweat and shiver and cough…and feel very, very sorry for myself…and guilty that I literally couldn’t do anything.

Normal service had well and truly ceased at Broccoli HQ.

…and Hannah’s daddy had to pick up all the pieces – feeding child, bathing child, dressing child, lifting and carrying child, playing with and placating child, taking her to appointments, liaising with people, collecting child, getting up in the night, cooking, ironing, cleaning, shopping…whilst also bringing in a wage….plus ensuring eyes were firmly in the back of his head so that said small person didn’t hurt herself, kept all her limbs intact and exactly where they should be.

 

Trust me, that’s no easy feat!

 

I was pale and weak and looked like I was going to pop my clogs anytime soon and he was so worried he suggested I see the doctor.  But that would’ve been entirely worthless:

 

(a)  Because, if I had actually managed to schmooze the receptionists, I still wouldn’t have got an appointment until May 2019, probably.

I’d have had more chance of seeing a Unicorn trot past Broccoli HQ!

(b) If I’d had the strength to get up and out, I’d have been stuck in a clammy and oppressive waiting room for at least an hour, trying not to keel over, infecting everyone and, in turn, breathing in their germs too.  Ugh, no thanks!

(c) Given it was viral, I’d have undoubtedly been advised that I’d be better by Spring (great!), to take paracetamol and rest…and return if I got any worse.

Ergo, pointless!

 

Now, this isn’t, by any means, a dig at organisations like our dying NHS, or at our (pretty much) non-existent social ‘care’ (more like ‘don’t care’) system.

But who actually cares for the carers?

Well, if you’re lucky to have a network of friends and family who know your child’s needs, who can come to your rescue, then they’ll probably help out for a while.  However, there’s only so much people can or are willing to do.

But if, like us, you’ve no-one, then you’re on your own.  Literally.

There’s no organisation out there to contact.  No cavalry to pick up the pieces.  No-one.

…and that can feel even more isolating as a parent of a child with additional needs…and increasingly scarier for the future.

So we try and carry on as best we can.

…but this time I couldn’t.

Now, I’m no Snowflake…

I’ve carried on through unbelievable pelvic and lower back pain.

Through scans and treatment – chewing blow-your-head-off painkillers like they were going out of fashion, just to get me through the day.

I’ve carried on through two bereavements.  Even on the day my mum died, my grief bore no significance/went on the back burner as I had to go and collect Hannah from her holiday play scheme, because she’d vomited.  No-one helped.  No-one came to my aid.

I’ve carried on through numerous bugs and viruses.  Through stitches (we won’t go there.  You’re welcome) and overwhelming exhaustion.

I’ve carried on through all manner of stuff.  Because I’ve had to.  Because a little person, so vulnerable, so dependent, needed me.  Needed someone who knew her needs.

I’ve also had to refrain from flicking people between the eyebrows, when I hear them bleating on about just how difficult parenting is.  Oh, boo hoo you!  Trust me, if you don’t have a child with additional needs, if you have people around to help out/babysit occasionally, then you REALLY have NO IDEA WHATSOEVER how hard parenting is.

GET.  A.  GRIP!

As I age, something will need to give.  I can’t completely shield myself from catching things from Hannah (or anyone else) – I can’t walk around wearing goggles and breathing apparatus (although I have given it a thought!).

But what I very clearly do need to do right now as part of my damage limitation strategy is STOP doing so much.  My immune system really needs to recover.  I need to STOP running around like a headless chicken.  STOP trying to accommodate everyone for everything.  Be a little bit more selfish.  Let others ‘do’.  Care less whilst still caring about the more important things in life.

My body told me I needed to stop, so I stopped – I didn’t have much choice.  And now I’m feeling slightly livelier, now I need to get back on track and consistently pace myself.

…and/or win the lottery so I can buy some help in.

 

Oooh, I just saw that Unicorn again!

 

So, I guess I need to STOP now, my lovelies.

Thanks, as always for dropping by.

Until next time

Annie xoxo

Reduce Your Risk

It’s Cervical Cancer Prevention Week, so here’s our contribution to help raise awareness.  Please be aware that if you continue reading this post, I will be discussing the beautiful female form, cervical smear tests, childbirth, vaginas (including mine!) profiteroles and Gethin Jones

 

So, you ready?

 

Yeah?

 

Okay, let’s go….

 

“…and how are you feeling?” asked my very lovely, empathetic GP.

“Oh, I’m okay, really” I said (EXACTLY like all us SEND mummies often do, when we’re actually the complete opposite.  Only a few weeks into to this journey and I was learning quickly, wasn’t I?)

“…although I’ve now got a vagina that looks like a dog’s chewed it!”

 

 

OH, HOW WE LAUGHED!

(True story!…except a dog hadn’t, honest!)

 

 

Though this (i.e. laughing) probably isn’t recommended when your doctor is in the throes of giving you an internal examination a few weeks after you’ve given birth!

…I could’ve chopped her hand off! (Slight exaggeration perhaps?)

That would’ve been a new one to put in The Lancet though, eh?

(That’s a UK Medical Journal, btw).

 

So, why am I telling you this, something SO personal?

Well, ladies (Gents, I’ll be coming to you in a bit. Don’t go anywhere please, okay?) I’m telling you because we need to be able to talk openly and completely unashamedly about our vaginas and vulvas and all the other clever associated internal bits…like our cervix…because recently I found out that a HUGE percentage of us girlies aren’t getting our foof’s checked out – I’m referring to a smear test, btw.  Just so you know.

Why aren’t we?  WHY GIRLS?  WHHHYYYYYYYYYYYYY? *pulls at own hair*

Ladies, if you are one of these people, I’m looking you with a very disappointed look on my face.

Apparently, according to Jo’s Cervical Cancer Trust who surveyed 2,017 British women, we’re embarrassed, we’ve got issues with our bodies.  And that’s possibly why at least 1 in 4 women (aged 25 – 64) don’t attend their smear test appointment – some prioritising the gym or a wax instead.

That’s just BONKERS!

Forty five minutes on the stepper or a Brazilian – I mean wax, not person –  isn’t, IN ANY WAY WHATSOEVER, going to save your life!

My loves, I have no intention of trying to scare you, but 220, 000 women are diagnosed with cervical abnormalities each year and cervical cancer is the most common cancer in women under 35.  (Source: Jo’s Cervical Cancer Trust)

…a smear test takes minutes, literally.  And it could save your life!

Now, if you think those female ‘celebs’ you avidly read about in those glossy magazines or see on the telly haven’t got vaginas or vulvas or wobbly bits of all wonderful shapes and sizes, then you’re sadly mistaken.  You’re being conned or brainwashed or whatever.  Stop comparing yourself.  Stop feeling inadequate or ‘imperfect’.  Because no matter our age or size, we’re all gloriously unique (and perfect and beautiful!) and we all have similarities….like having vaginas!…yay, go us!

My Sisters, if you’ve never had a smear test before, let me tell you this…

Some of you may be hoping to have a baby in the future, so at some point you’ll need to get over your embarrassment, because trust me, when you’re in the throes of childbirth you don’t care who’s staring at or rummaging around in your undercarriage:

Whilst giving birth, you wouldn’t protest even if someone wheeled you on a trolley, legs akimbo, into the busiest food aisle at Marks and Spencer’s on a Saturday afternoon (I’d recommend the £10 Dine In For Two area) and you REALLY WOULDN’T GIVE TWO HOOTS who was looking at your Lady Garden, and EVEN if Gethin Jones (Ding Dong!) reached over you to grab some profiteroles!

YOU.  WON’T.  CARE!

TRUST ME ON THAT ONE! 

(Btw, I have no idea whether Gethin Jones likes profiteroles…but if I manage to get to The Baps Awards later this year then I’ll make sure to ask him! *winks*)

 

…and even if you don’t intend on having a baby, this is important.

YOU are important!

Darling, YOU are precious…and those that love you, would be even more devastated if they lost you as a result of something that could’ve been detected and treated if only you’d have gone and got that smear test.

Also, from what I’ve learned over the years since Hannah arrived, you SEND mummies *points* (admittedly, me included at times *holds hands up in acknowledgement*) are THE WORST at looking after yourself.  I know you probably won’t be remotely bothered or embarrassed about exposing your bits to someone – you’ve gone waaayyyyy past that point! – but really, I know you’re crazily busy, but prioritise YOU.  Please?

…and anyway, it gives you a good excuse to buy some nice new knickers, instead of going to your appointment in those old (once white, now grey) ones lurking in your undies drawer (despite them being your comfiest).  DON’T DENY IT, I KNOW YOU HAVE THEM!

So, how is this relevant to My Kid Loves Broccoli: a blog about life with Hannah, who has a rare genetic syndrome and other stuff?

Well, gentle reader, it’s got a lot to do with MKLB.

You see, whilst Hannah’s only a little girl right now, hopefully, someday, she’ll become a young woman and if you’re over 25 years old, you’re (currently) eligible for a free smear test in the UK. So Hannah too ought to have the same rights to get checked out, don’t you think?

I’ll be honest with you, whilst I’ve worried about issues surrounding menstruation and puberty in general, future smear tests weren’t on my radar for Hannah and I only gave this some thought whilst writing this post.

But unfortunately it won’t be that simple for Hannah (rarely is!) as not only is she affected by a rare genetic syndrome, she has a whole host of other things which would impact on her ability to be tested; predominantly her profound learning disabilities, her inability to communicate effectively, her perception of the world around her and that we possibly won’t be able to explain to her (and her understand) what a smear test entailed.

Plus, given that it took five people -THAT’S FIVE PEOPLE – to take a simple blood test last year, I envisage an equally quick and simple procedure – like a smear test – to be nigh on impossible for Hannah.

…and that makes me sad…and more fearful for her, in equal measures.

It’s a procedure that we women may take for granted and choose not to go.   It’s quick and painless.  But unlike you, Hannah, through no fault of her own, may be denied something that could potentially save her life.

Am I trying to make you feel guilty for not going and pluck at your heartstrings?  HELL, YES I AM!

In this respect, by having that choice to have it or not, YOU are lucky.

Others aren’t so.

So, get your big girls pants on and just do it.  It’ll only take a little time out of your day and again, it could be a life saver.  YOUR life saver.

 

To conclude this post, we come to you lovely gentlemen who read my blatherings (thank you!)

Whilst you may not have the necessary ‘accoutrements’ to go for a smear test yourself, you can gently encourage the love of your life to get checked.  You could even offer to go with her and hold her hand if they’re really nervous (just don’t make her laugh OR leer down at the ‘coal face’ whilst it’s being done…that’s just a bit wrong…and you might get a slap!).

Oh, and maybe, whilst you’re there, you could get yourself checked out too: Crown Jewels, prostate, the lot!

Badda Bing, Badda Boom!

So, do we have a deal?  Have I pestered you enough? Have I convinced you to get yourself checked out?

If you’re currently overdue for a test, as soon as the GP surgery is open tomorrow, pick up that phone, dial that number and make an appointment for a smear test.  Oh, and please check with your girly friends when they last had a smear test too…and then badger them if they’re overdue!

Promise?

Good!

Here endeth the lesson.

and…if you need more info, here’s some links to Jo’s Trust:

For women with a learning disability (some great resources here!): https://www.jostrust.org.uk/about-cervical-cancer/cervical-screening-smear-test-and-abnormal-cells/women-learning-disabilities

What happens during a smear test: https://www.jostrust.org.uk/about-cervical-cancer/cervical-screening-smear-test-and-abnormal-cells/what-will-happen-during-my-cervical-screening

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

Thanks, as always, for stopping by.

Until next time

Annie xoxo

If I told you what the title is, you’d never read on…

 

Happy New Year my lovelies!

 

I hope this year is a happy, healthy one for you all.

 
For our first post of the year – and to celebrate our blogs fourth birthday (woo hoo, yay, go us!) – I thought I’d start off with something jolly and uplifting…maybe about our recent holiday to lovely, lovely Cornwall perhaps?…or possibly our aspirations for this shiny New Year?

 
Well….erm…that was the plan anyway. However, life doesn’t always pan out as we anticipate, does it?

 
So, in this post, I’m going to talk to you about something that got a bit out of control recently….

 

 

 

Self-harm

 

 

(See? told you you’d never read on if I told you what the title would’ve been! We’d love you to stick around though, as this stuff doesn’t get much press. However, we’ll totally understand if you’d rather go and do something else)

 

 

So, you’re sticking with us then?

 
Great!

 
Let’s talk about self-harm, shall we?

 
Or, if you’re feeling posh (or are a bit posh), then you could refer to it as ‘self-injurious behaviour’…but that’s more of a mouthful, so we’ll stick to calling it self-harm, because it’s easier…and I’m not even remotely posh! *bows*

 
(btw, I’ll be referring to Hannah’s specific self-harming behaviours in this post)
But whatever you call it, it’s rubbish. Really, really, utterly R.U.B.B.I.S.H.  And, as her mummy, every time I see Hannah hurting herself and can’t stop her, my heart breaks a little bit more.

 
…it’s the bane of my life – well, one of them, at least!

 
So, what is this self-harm stuff and why did it get out of control recently?

 
Well, on the morning we were due to set off for our holiday to Cornwall…

 
(At this juncture, Barbara shouts to Derek in the kitchen “Derek, DEREK!!!!, she’s going on about Cornwall again…forget the tea, get the bottle of sherry off the top shelf…it’s going to be a long one!).
Fear not Barbara, Cornwall will not be mentioned further in this post. You’re welcome!



 
n.b. for those of you who’re new to this blog (hello, welcome, thanks for stopping by!) a mere mention of Cornwall and you’ll see me salivating like one of Pavlov’s dogs.  I/we LOVE the place…but don’t live there…yet!

 

 

Anyway, back to the post…

 
Hannah woke with a very red, inflamed, rather nasty looking hand.

 

Ouch!

 

 

She’d been biting throughout the week – mostly when I wasn’t around (sneaky!) – and, whilst it’d been triggered by her new molars coming through, it’d become (as it does) more a bit of a habit, rather than a further reaction to pain.

 
…it’s ever present. But sometimes it peaks and sometimes it plateaus. We were on a HUGE peak!

 
Not only was it the worst I’d ever seen, but nestling in the centre of her wound was a dodgy looking hard black lump.  BLACK!

 
Gulp!

 
I promptly phoned our GP.  The receptionist wasn’t remotely interested.  Nice!  Thanks for that!

 
So, I contacted our lovely, lovely Community Nurses, who were more than happy to help us if we were able make the trip across town.  Not a problem, we said.  The car and the roof rack were fit to bursting with all our holiday stuff, but that wouldn’t stop us.

 
Erm…well…that’s after the RAC man promptly came to our rescue to replace the cars faulty battery.  The battery which could’ve gone on the blink at any time during our travels down South, rather than on our driveway!

 
Then off we trotted (okay, drove) to see the lovely nurse, who, after taking a look at Hannah’s hand, was eager for us to go on our holidays, but advised a little trip to A&E (the emergency room) was advisable first, or when we got to our destination.

 

This is really good fun, mummy.  Can we come here again?

 

So, off we went again. Back across town.

 
As we entered the Children’s A&E department, all I could focus on was the sea of disposable vomit bowls stuck to little people’s faces. Great! Not only was I now envisaging Hannah’s hand dropping off from necrosis, we were now breathing in the putrid fumes of a thousand (slight exaggeration) norovirus-infested-urchins and so we’d all end up suffering from said vom-bug throughout our Christmas and New Year holiday!

 
Great.  Just sodding great!  That’s all we need!

 
As a result, we sat, immobile-ish, trying not to inhale too much, in a corner, out of the way, for the whole of our wait to see a hospital doctor.

 
Waiting done.  Inspection made, despite small wiggly persons protests.  No major concerns raised, but hyper vigilance recommended over the next few days (not a problem…already do that!) as her biting had caused an internal bleed.  Bandages and dressings applied…and more bandages and dressings supplied, with advice to seek support in Cornwall if necessary.  We then set off on our jollies. Yay!

 
What a faff of a day that was though.

 
…but as much as the NHS is getting rather a lot of negative press at present (part of my theory being so the Government can justify to us that it all needs selling off to make it better…Grrr!), the staff we saw on our travels were fab-u-lous.

 
It was tricky to keep the bandages and dressings on and subsequently change them, but we did, and after a few days the wound had healed and everything settled, thankfully. And thus began Hannah’s fervent interest (obsession) in picking at the scab *sigh*.

 
But how can I stop it all?

 
Well, as much as I’d like to, I can’t.  Simple as.

 
If I could, then I’d patent the ‘cure’ and make myself a very wealthy woman!

 
Hannah bites when she’s excited, in pain, frustrated, to test mine or others reaction (oh, she’s a tease!), out of habit and for a whole load of other reasons.  Sometimes she nibbles, sometimes she bites down hard to the bone, and sometimes she then pulls the skin violently away from her hand.  The only time she doesn’t bite is when she’s asleep.  She also picks at the skin on her fingers.  And when you have a child with additional needs/these behaviours, all these well-meaning people give you lots of unsolicited (totally useless) advice.  In their opinion, you, as the parent, who probably/hopefully know your child BETTER THAN ANYONE ELSE ON THE PLANET obviously are a bit useless and aren’t addressing the problem, so they’ll advise *rolls eyes*. And you, being Soooooooo accustomed to this form of ‘counsel’ over the years, will probably smile kindly, thank them, explain a bit, whilst imagining your eyes rolling around in the back of your head.

 
See, thing is, you can’t stop it.  You can’t cure it.  It is what it is.

 
All you can do is be vigilant.  Try to discover the triggers.  Alleviate, calm, avoid, distract or whatever works for your child.

 
So, who can self-harm?  Well actually, anyone can.

 
Self-harm can take a variety of forms and you don’t have to have profound disabilities like Hannah.  Heard of people cutting their skin? Heard of people misusing alcohol or substances? Heard of anorexia or bulimia? According to the NHS they’re all forms of self-harm; when someone intentionally harms themselves.

 
However, the most common forms of self-harm for people affected by CdLS (the syndrome Hannah is diagnosed with) are scratching (or picking), biting and head hitting or banging.  Been there, got the T-shirt on all of those! *sigh*

 
Several studies have suggested that self-harm in people with Cornelia de Lange Syndrome (CdLS) has a compulsive quality (you don’t say!). Approximately 60% of individuals who have CdLS will self-harm at some point.  Unlike other people with different intellectual disabilities, it’s more likely to be directed towards the hands; it’s more likely to take the form of biting and there’s some evidence to suggest the behaviour needs active control by self-restraint.

 
Bit of a grim read, huh?

 
Anyway, let’s wrap this up shall we?

 

 

If you’re remotely interested in finding out more or are a parent of a child with additional needs/CdLS who self-harms, then here’s some resources which you might find useful.

 
NHS definition of Self-harm: https://www.nhs.uk/conditions/self-harm/

 
Self-injurious behaviour in children with intellectual disability: http://w3.cerebra.org.uk/research/research-papers/self-injurious-behaviour-in-children-with-intellectual-disability/

 
Self-injurious behaviour and Cornelia de Lange Syndrome. A guide for parents and carers: http://www.cdlsusa.org/docs/publications/behavior/self-injurious-behavior.pdf

 
The FLACC Pain Scale: http://www.cerebra.org.uk/help-and-information/guides-for-parents/pain-in-children-with-severe-intellectual-disability-a-guide-for-parents/

 

 

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

 
Thanks for stopping by,

 
(I’ll try to make it a jolly post next time!)

 
Until next time

 
Annie xoxo

Over to you, Hannah!

Well, my people, I can confidently say that since Hannah came along, life has never been dull.

Not one bit!

As I’ve said before, there’ve been ups…aaaaaaaand quite a few downs; just like a rollercoaster.

(In this respect, I guess us lot at Broccoli HQ are no different to many of you reading this!)

…and it’d be very easy to walk around looking all pitiful and wallow in the ‘why Hannah, why us?’ stuff.  But, ugh, no thanks! That’s not how we roll at Broccoli HQ.

Now, don’t get me wrong, I could go on and on (and on) about the rubbish stuff that’s happened this year…the reflux, the sleepless nights, the self-harm, the tears and angst, the surgery, the frustrations, the countless appointments and traipses to and from the hospital, the autism and SMC1a diagnoses.  Oh yeah, AND not forgetting the time when I was misinformed that Hannah had previously experienced a cardiac arrest (but after investigation, then advised she’d had a respiratory arrest. Dur!).  Still rubbish, regardless, but different, although still potentially fatal.

…but I’m not going to harp on (you’re welcome!).  After all, what’s the point?  What’s happened, has happened.

So let’s move on, shall we?

Now my lovelies, in this, our very last post of the year, I thought I’d share a little of the more positive stuff, the funny stuff, the proud jump-up-and-down stuff…

Over the course of this year and especially the last few months, we’ve had the luxury of watching Hannah blossom a little more; she’s been more responsive (when the mood takes her!); been able to stay on task a little longer (again, when the mood takes her); been more alert and present…oh, and she’s even developed a bit of a bossy streak! (no idea where she gets that from!) *feigns look of innocence*

I recently had a look back at her photos on our Facebook page (if you haven’t visited us there yet, feel free to pop over anytime) and oh blimey, that joie de vivre of hers shines through and is totally infectious.

Here’s just a few examples from our page…

 

Have a guess who was awake at 2.30am and didn’t go back to sleep…

Guess who, despite being asked not to 25 BILLION times, pulled down the hood of her pram with such force, she broke it.

Then, guess who kicked a table over in a coffee shop, breaking several pieces of crockery and who found it totally hilarious…oh, the shame!

…Then who tried to ‘run’ (Hannah style) around the park with her hood over her face, just because.

(Yes, my darlings, that was a looooooooooong day!)

 

Sliding under the table in a fancy restaurant was SO much fun…and drinking through a straw was totally HILARIOUS!

 

Here’s Hannah painting at Broccoli HQ.  I offered her services to any summer brides wanting their make-up done.  Surprisingly, there was no take up.  Dunno why!

 

This is the child supposedly unable to tolerate showers.  However, whilst I was running Hannah’s evening bath, she decided it would be TOTALLY hilarious to have a shower…in her school uniform (saves putting the washing machine on, I guess!)

 

The time when a mass murder was (almost) committed.  Hannah did exceptionally well feeding the ducks and was allowed, for the very first time EVER, to have sole possession of a rather heavy bag of bird seed.  And she didn’t (well, not much) eat the seed – yay! However, seconds after we stopped filming this momentous occasion, Hannah decided to THROW THE WHOLE BAG IN THE CANAL!!!  Thankfully, no ducklings eagerly awaiting a treat sustained a catastrophic head injury and daddy managed to fish the bag out of the water.  Phew!

 

Only the pigeons stuck around! 

 

 

The obligatory return to school photo, which took about 500 attempts to get a half decent/non blurry one – Hannah finds it difficult to stay still.

 

But (then) this happened.  After enduring CBeebies for the last 8 years and Hannah paying very little attention, she just sat on the floor and watched In The Night Garden…followed by the World Athletic Championship 100m finals.  Hooray!

 

…and there’ve also been the times when photos couldn’t POSSIBLY capture my girls tenacity and courage.

Here’s a momentous occasion I posted on Facebook…

Oh my people, I CANNOT begin to express how very, very, VERY proud I am of my girl today. Hannah’s been having extra-curricular swimming sessions in school and today she came home with a certificate…a certificate which has been given to her for….

SWIMMING THE WHOLE LENGTH OF THE POOL IN HER RING AND KICKING HER LEGS INDEPENDENTLY!!!!!!!!!!!

THIS is a HUMONGOUS achievement for Hannah. THIS is also a glorious two fingered salute to those people who, many years ago, pretty much wrote her off.  Sure, she was wearing her ring, but I don’t care – she could’ve ridden on the back of a sodding dolphin and done the length.  It doesn’t matter, SHE DID IT.  (Actually, it would’ve been pretty cool of she had ridden on the back of a dolphin, but I guess schools health and safety insurance wouldn’t have covered that).

Right, I’m off to source a MAHOOSIVE tub of goose fat.  The English channels only 21 miles.  The kid’ll easily manage that…in her ring!

 

…and it’s not just Hannah’s daddy and I that’ve noticed her blossoming; other people have too.  Here’s an example; a lovely note in Hannah’s daily diary from her Teacher:

“We were waiting for the buses at the end of the day and Hannah was wandering around with the spikey big ball.  I said to Hannah, let’s play ball Hannah and I pulled up a chair to sit at the opposite side of the table to Hannah.  Hannah then walked away from the table and walked over to a stack of chairs.  We thought Hannah was going to tip the chairs over as she was very giddy.  To our amazement, she was tipping the chairs to get her own chair off, brought this to the table, pushed the chair in herself and then signed “more ball” to initiate the game….we are so proud”.

 

…I can’t begin to tell you how much reading this stuff makes my heart melt!

Proud, proud, PROUD! ❤

 

So, let’s try and wrap this up shall we?

Recently, I read two books by Naoki Higashida – a young man far more intelligent and articulate than I.  Naoki was just 13 when he wrote his first book “The reason I jump” – his account of Autism, and, just like Hannah, Naoki is non-verbal.  Whilst we’re all gloriously unique, Naoki helped me gain an insight into Hannah’s world…and he inspired me. He inspired me to keep going in aiding Hannah’s communication, to make sure I continue to observe and soothe and be persistent and have patience.

…and not to lose sight amongst all the ‘stuff’ that I’m still mummy.

And now, I’m absolutely confident that despite others perceiving Hannah’s behaviours and little idiosyncrasies as ‘severe’, this child knows FAR more than people give her credit for…and I’ll prove this to you in a post next year (ooh, the suspense!).

Naoki initially began to communicate by pointing to letters and spelling out words, requiring him to have a significant amount of patience and undoubtedly a time consuming task for all involved!

So, taking inspiration from Naoki and as my laptop is pretty much on its last legs, I thought I’d let Hannah have a play with (bash on) it and see what she came up with.  After all, this is a blog inspired by her!

Please note that what you’re about to read is ALL her own work.  It doesn’t matter that it’s not ‘legible’ to you or I; whether you understand the combination of letters and symbols and how they’re placed.  All that matters right now is that she had the patience to do it and that she enjoyed doing it.  We’ll work on the rest.

(Although I’d like to think she typed “my mummy is the bestest mummy in the world”.  Just sayin *winks*)

So, without further ado…over to you, Hannah….

 

 

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That’s almost all for now, my lovelies.

But let me leave you with a little something by A.A. Milne from Winnie-the-Poo:

 “Rivers know this: there is no hurry. We shall get there some day.”

…and we will Hannah, my darling, we will.

 

Wishing you and your loved ones a wonderful Christmas and a happy, healthy 2018.

Until next time

Annie xoxo