Madame Broccolina and the crystal ball

Or otherwise (far more aptly) entitled…

A few of the anxieties and dilemmas of parenting a non-verbal, significantly developmentally delayed child

Please don’t let me confuse you with the opening title or the very dodgy photo; I haven’t changed my name, dug the crystal ball out of the drawer, bought some dangly earrings and a headscarf and set up shop as a clairvoyant – honest!

…although sometimes, I DO actually feel the need to possess psychic abilities.

Well, when I say ‘sometimes’, I actually mean most of the time. *sigh*

The title’s just my paltry attempt at lightening the mood a little before I get into the more serious side of this post.

N.B. For those of you new to our blog (Hello! *waves vigorously*) Hannah, my daughter – the star of this blog – has a rare genetic syndrome which affects most aspects of her life. Hannah’s non-verbal and significantly developmentally delayed and seems to view the world a little differently than maybe you or I, so communication/understanding is pretty tricky (understatement!) and, at times, the lack of it is rather anxiety provoking.

In fact, I can’t begin to describe the magnitude of how daunting it can be sometimes.

Well, actually, I can begin; that’s why I’m writing this post. Duh!

(Oh Lordy. She’s going to waffle on again and get all maudlin….JUST. GET. ON. WITH. IT. ANNIE!)

Oh, OK then.

…but I’ll try not to get too maudlin. Promise!

…but I can’t promise not to waffle on a bit though.

Sorry about that. I just can’t help myself.

So, what motivated me to write this?

Well, you see, a day after I published my last musings, it seems that Hannah started to feel unwell.

I say “it seems” because it came on gradually, so it wasn’t too noticeable at first. On her return from a lovely day at school she just picked at her evening meal. She ate very little.

That was a sign that something wasn’t good, because Hannah absolutely loves food and we’re lucky that she’ll eat mostly anything she’s given – olives, quinoa, houmous, broccoli (of course!), wax crayons, play dough, dried leaves (yes, she’s been known to have a crafty quick chomp of the latter three non-edibles (and other gross, non-edible stuff too) *sigh*.

But she has an extraordinary appetite for such a little girl and other than picking at her food, she seemed absolutely fine; she played with her toys, enjoyed her bath time and was a giddy little kipper before bedtime.

The following day was another matter entirely though:

Despite sleeping quite well, she didn’t ‘sing’ in her bed on waking (I’m not a great fan of her waking me up so early, but I really do love to hear her songs in the morning)

She refused food and drink.

She sat, relatively listless in the bath, not wanting to play with her toys.

She whimpered on and off.

She hit herself on the head several times and just oozed malaise – heart-breaking stuff to watch as a parent.

Hannah wasn’t feeling like Hannah.

Not one bit.

But there were no tangible physical signs to give me any clues; like a high temperature, or rashes. There was nothing at all – other than nasal congestion, which is very common for her; evidence of this often being surreptitiously deposited onto my shoulder/hair/clothes whilst I’m carrying her.

Thanks for that Hannah!

Not only is Hannah non-verbal, her pain threshold is much different to that of an average child and she can’t even point to where she hurts.

So it all gets a bit, well, frustrating sometimes…for both of us.

If you have a healthy, verbal child without any additional needs, it’ll be nigh on impossible for you to grasp just how truly awful this can be for parents. However, just try and cast your mind back to when your kid(s) were babies for a moment…

Remember when they cried….and cried….and cried…and nothing, no matter what you did, made them feel any better?

Remember how you felt?

I bet you probably felt rotten and maybe pretty helpless and sometimes absolutely exhausted and I’m sure you’d have done anything and everything to see that little smile return to their face.

So, imagine 6, almost 7 years, of experiencing that feeling, time and time again.

Yep, that’s exactly how we feel here at Broccoli HQ…and, believe me, it ain’t much fun.

No Siree!

But we’re not alone, because there’s lots and lots of people all across the world in the same boat as we are.

…and I empathise with each and every one of them.

If you’ve read my posts before, or actually know Hannah personally, you’ll know that she’s generally a really happy-go-lucky little girl and rarely cries. So when she does cry, I know there’s something really wrong (apart from the odd times when she’s tried to fake a cry but can’t sustain it because it makes her laugh!)…but really, it’s SO unbelievably hard sometimes to know the reason why she’s crying or how she’s feeling.

Like most parents, I’ll go through the general check list stuff: temperature control (i.e. too hot/cold), check for rashes, swollen glands, red throat, hungry? thirsty? any bumps and bruises – although mostly she wouldn’t cry or bother if she’d bumped herself…yadda, yadda, yadda.

But my crystal ball has seen far better days and, in our world, it’s often just guesswork/winging it to try and fathom out what needs to be done to make her feel better.

If her crying or malaise or general ‘un-Hannahness’ persists…then that’s when my panic sets in. That’s when my heartbeat accelerates and I start to question whether there’s something really serious that I’m missing or if we need to get to the hospital.

My mind goes into an absolute whizz sometimes!

However, there’s no wrapping this stuff up, putting a silk bow on it and trying to making light of things like this. It’s no fun at all. This non-verbal/lack of communication, in any form, is pretty frustrating and scary sometimes…in fact, let me be perfectly honest with you, it sucks…BIG TIME!

There’s no point me waving a dismissive hand when someone says “it must be hard” *head tilt*, you know, like they often do, and telling them that ‘we’re used to it’ and make attempts to make them feel better about what they’ve just said. Nope, we’re not used to it.

We live it EVERY. SINGLE. DAY. And we don’t ever want to get used to it.

EVER!

It’s hard. Indescribably hard. Heartbreakingly hard.

Just bloody, rottenly, rubbishly  hard.

Because everyone needs to have the capacity to communicate in some way to make their needs and wishes known.

So when we’re out and about and I hear people yelling at their kids to “shut up”, “be quiet”, “hush” or whatever, it makes me cringe. Because I wonder how they’d feel if ‘it’ (i.e. the silence) ever happened one day….and it could, quite easily, for anyone.

No-one is exempt.

But that probably doesn’t ever cross people’s minds. And why should it really?

…until it happens to them.

Now I don’t wish to come across all self-righteous or pedantic here, but I can categorically say (and will eternally stick to this promise), that if Hannah could speak, I’d never, EVER tell her to be quiet.

You can hold me to that!

In fact, I’d probably encourage her to ‘rabbit on’ as much and as often as possible and I’d just invest in some earplugs if it all got too much.

I get it that kids can drive you a little potty sometimes. I honestly do. But, let’s face it, grown-ups can drive you up the wall too, probably more so!!!!!…in fact, scratch that, I’d say most definitely MORE so!

I also get it that parents can become so emotionally drained sometimes that they’d just like five minutes peace; or they may get fed up with their kids making demands whilst in the supermarket when all they want to do is whizz around as fast as they can, get what they need and then get out of there, or whatever.

I get it.

(Please note, I’m not referring to a child with ASD/SPD or any other diagnosis…I’m referring to a child who has no additional needs whatsoever…other than ‘needing’ their parents to buy them something in the supermarket)

But for those of you who don’t care for a child with additional needs (and a child who’s non-verbal too), just know that I and probably most other parents in the same situation as us, would give everything and anything JUST to have our children talk or communicate in some way.

…and there’s plenty of reasons why…

Not only do I need Hannah to tell me or anyone else for that matter how she’s feeling when she’s unwell so that I can fix it; but I want her to be able to make a choice about what she eats, or where she wants to go, or how warm she wants her bath water, or what she wants to wear or what she wants to do.

Or anything.

Anything at all.

Oh, the list is endless.

I want and need her to be able to make choices about every aspect of her life.

But right now that just isn’t happening. But I can’t ponder on that, otherwise, I’d just eat myself up about it.

Now I know I’ve said it before, but I’d really love her to look at me with utter disdain and say “mummy, you are NOT going out with me like THAT. Go back upstairs immediately and get changed” and I always felt that THE ultimate thing to hear her say would be “I love you mummy”.

I believed that day would be the happiest day of my life and would be the most beautiful words I’ve ever heard…and it probably would. But really, in the grand scheme of things, it’s not so important. That’d be meeting my need, not hers.

It serves no purpose for Hannah whatsoever.

…although, I’ll never give up hope on it happening!

So that old proverb, “Speech is silver and silence is golden” isn’t quite right in our world….it’s sometimes torturous and downright frustrating and occasionally frightening too.

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

The crystal ball’s been shipped off to the charity shop. Hopefully, it’ll regain it’s magical powers and be of some use to someone else in the future!

Apologies if I’ve caused you to crack open a bottle of wine after reading this rather sombre post, but it has to be said….but if you did open a bottle of wine, have a glass for me please….Cheers!

Thanks, as always, for stopping by.

Until next time.

Annie xoxo

Oh, p.s. Hannah is much better now. Phew!

p.p.s. Happy Valentine’s Day for Sunday ❤

This post is dedicated to Madame Broccolina…whoever and wherever she is. I hope her crystal ball’s more effective than mine!

Graphic courtesy of photofunia.com