That longed for gesture

Or otherwise entitled…

One of those celebrations that (probably) only Special Parents will really ‘get’

 

We’re celebrating here at Broccoli HQ as we’ve recently witnessed a glimmer in Hannah’s development.

Woo hoo!

So I thought I’d share it with you and have a bit of a brag at the same time.

Well, it’d be rude not to, wouldn’t it?

Now, before I go on, just in case anyone’s new to our blog (“Hello, welcome!” *waves rather vigorously*) I’ll give you an incredibly brief summary of ‘The Kid’ just so this post makes a little sense and you can decide whether you want to read on, or not:

Hannah is 6 years old. She’s scrumptious (if I do say so myself!) and she has a rare genetic condition called Cornelia de Lange Syndrome. Hannah displays lots of autistic traits (including avoiding eye contact – but this is improving beautifully), sensory processing disorder and self-harming behaviours. She’s also non-verbal and significantly developmentally delayed and her syndrome affects most aspects of her life – from her mobility to the way she perceives the world – so life for Hannah has been tough. Really challenging at times. But she’s a tough cookie and has a zest for life that I’ve never known in anyone else before.

She’s got an amazing personality. She’s very precious…and I’m EXTREMELY proud of her.

So, there you have it…in a nutshell, so to speak.

It’s been tricky (understatement!) for me as her mama too – adjusting to the life I didn’t ever anticipate we’d have; getting to know all Hannah’s little idiosyncrasies and gestures and being able to ‘read’ her so I have some understanding of what’s going on for her.

Up until only recently I questioned whether Hannah had any kind of ‘attachment’ to me as her Mama. Now that’ll probably be difficult for an average parent to grasp, but just imagine if you pick up your baby and they squirm and arch their back away from having contact with you or they recoil when you touch them as if it’s painful, or when you walk into the room or speak to your child they totally disregard you – constantly. Imagine trying to give hugs, but your child writhes away from you. Imagine rarely being able to look your child in the eyes and they look at you right back; the times when there’s no need for any words. It’s the unspoken communication of “I see you mummy, I know you’re here with me” *melt*

It’s really indescribably hard when nothing’s reciprocated or a simple gesture of affection seems to cause a negative reaction or it appears almost painful for your child.

Sometimes, it’s heartbreakingly hard.

But I and many other Special Parents like me, just get on with life and do the best we can living OUR ‘normal’.

But any tiny development is HUGE in our world.

…and we’ve had a few…

Like I mentioned, eye contact is improving and Hannah now seeks out physical contact and OH. M. G. she gives THE bestest hugs IN. THE. WORLD…like, EVER!

They were well worth the wait!

…although if she continues to squeeze too hard, one day, she’ll cut off the oxygen supply to my head!

Note to self: Mustn’t complain about this or EVER take for granted!

But one thing I’ve longed for (and this may sound a little weird to an average parent) is that when I have to leave Hannah with someone else, she shows me a sign (anything would do – I’m not fussy) that she doesn’t want me to leave her.

You see, ordinarily, I’ll drop Hannah off somewhere and (if she could) she may as well just wave a nonchalant hand as she flounces off and say ‘laters mama’, leaving me somewhat despondent and feeling completely and utterly inconsequential.

Ah well.

Equally, when I go to collect her, she’ll typically evade any eye contact whatsoever and avoid me like the plague and, at times, this has necessitated me spending significant amounts of time trying to coax her out of the door – it’s like grappling with a WWF wrestler sometimes!

Ah well, again!

Now don’t get me wrong, I’m not sure how I’d have handled a baby or child who went blue in the face as a consequence of weeping inconsolably whilst throwing themselves on the floor at the prospect of my departure. Nor would my breaking heart have coped at a child clutching my leg and scratching the skin off through my jeans, whilst I tried to make a swift exit.

We’d have probably never gone anywhere without each other!

But I’d have liked some kind of gesture. Anything really. Anything at all.

…and that gap in my heart, where that little ‘longing’ secretly lived for all these years, has been waiting for that space to be filled.

So, here’s where I FINALLY get to the point of this post (oh I do go on, don’t I? – apologies)

I’ve had the gesture!!!!!

HIP HIP HOORAH!

Yay!

Booyah!

Oh yeah!

(and one for the football/soccer loving daddies – mustn’t leave them out)…Back of the net!

…and that little space in my heart has been filled right up to the brim!

Long story, will spare you all the details. I know, I bet you’re thinking “Phew! Thank goodness for that”. But here’s a brief summary:

So, the other day I had to drop Hannah off somewhere. She did her usual ‘laters mama’ thing whilst throwing herself enthusiastically into a huge box of Lego and I went on my way. Feeling insignificant and despondent, as usual.

However, a couple of hours later I had to call back, unannounced, in order to drop something off.

Then, as I said my goodbyes again and went towards the door, Hannah grasped my right index finger and put it to her face. As I tried to loosen her grip she held on even tighter. If she could talk, she’d have probably said “Make one more move towards that door lady and I’ll snap this finger like a twig so you’ll never EVER send a text or type a blog post again. CAPICHE?!)

Finger

An example of the finger grabbing ‘technique’

 

Thankfully, I managed to release said (now purple) finger and she gripped, YES GRIPPED!!!!!!!! at my leg and tugged at my jeans.

AND made a little whimper. *double melt*

This was a clear indication that she didn’t want me to go.

Yay!

Whoop whoop!

*fist pump*

Holy Moly, this was BIG!

I.WAS. ECSTATIC!

The staff there had never seen this before (nor had I!!!) and I was like, “FINALLY!” and doing a bit of a jig as I made a fuss of her, encouraged her to go and play, said goodbye and did a bit of a moonwalk glide thing out of the door.

“I told you that mother was a bit weird, Gladys” a staff member muttered under her breath, folding her arms over her pinny and tutting. No, actually, she didn’t at all. They got it. Completely….and they’re all wonderful…even if they do secretly think I’m a bit weird.

But then I saw Hannah at the glass door, looking at me all forlorn – as sad as Hannah can look.

…and whilst this was, undoubtedly, a time for great celebration, I could have easily gone right back in there and took her with me.

But I didn’t.

…and when I went to collect her later, I received THE best hug I could have ever wished for and didn’t have to grapple with her like a Lucha Libre to get her out of the door.

Heavenly!

So, there you have it, our brand new, rather wonderful development.

Oh, naturally, I did expect the exact same response the next time I had to leave her. Sadly, this didn’t happen. I got the ‘laters mama’ treatment again. *sigh*

Ah well, I suppose you can have too much of a good thing, eh? She’s clearly deciding to keep me on my toes and catch me unawares.

That’s my girl! 🙂

 

Finally, before I leave you, a smidgen of stuff about attachment theory…

Over the years, there’ve been quite a few psychologists jumping on the old attachment theory bandwagon and coming up with their own ideas about it. Some, more popular than others, devising developmental charts at what stage a child ought to develop certain ‘attachments’ to caregivers and others. It’s all about emotional bonds and interpersonal relationships and isn’t necessarily always reciprocal. However (and here’s where it gets tricky) those developments and gestures aren’t always evident in children with additional needs…but they could, actually, be there; just not in the ‘atypical’ sense that’s defined in all those research papers and ‘findings’. So, if your job necessitates commenting or making assessments on these attachments, be very careful. Very!. Sure, tick your standardised boxes, that’s what you’re expected to do and that’s absolutely ok. But also try and think outside the box too. That’s important. In fact, it’s essential. Listen carefully to the experts (i.e. parent/carers) and take on board what they’re saying – please don’t dismiss it. Get to know that particular child and any tiny little behaviours, gestures, characteristics, even an eye or head movement or a sound or whatever, before you state your findings. Otherwise, it’ll just be a snapshot judgment and can’t possibly be conclusive or grounded in any evidence and will have little or no benefit to anyone.

Here endeth the lesson!

 

So, that’s all for now my lovelies.

Thanks, as always, for stopping by.

Until next time.

Annie xoxo

 This post is dedicated to all the Special Mamas and Daddies patiently and hopefully waiting for a glimmer of a gesture…I really hope you get it one day.  Never say never!

 

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8 Responses to That longed for gesture

  1. Jane says:

    This is HUGE!You were awesomely controlled not to go back in.Good work Hannah,good work.

  2. Yaaaay!! So sweet. And I love that you got a picture of her holding your finger! 🙂

  3. Congratulations, Mom. Happy for you

  4. Adrienne says:

    Hi Anne,

    that’s fantastic progress. I know how you feel, felt it many times myself but it looks as if you’ve been successful at teaching independence too!! Hannah’s such a big girl now – has she lost a front baby tooth? Love Adrienne xxx Sent from my iPad

    • Thanks Adrienne. She’s definitely had a little growth spurt recently – thankfully! – although her feet don’t seem to be doing the same. The front baby tooth has gone…she swallowed it! 😦

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