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The Communication Diary: Let’s Talk…

The Communication Diary: Let’s Talk…

Even though I’m now used to Hannah being away from me – having attended school, nursery and after having a couple of overnight (gulp!) respite weekends, my heart is still a little heavy when I wave goodbye to her.

I’ll let you into a little secret though…sometimes I also breathe a huge sigh of relief!  *hangs head in shame at confession*

Only because that means I get time to do the things I really need to do – like stand motionless in the middle of the room and stare in utter bewilderment at the plethora of abandoned toys and sticky finger marks and just general chaos that Hannah leaves in her wake as she exits Broccoli HQ…or just go and lie down for an hour…or two…just to recharge my batteries.

Even if I scrubbed the house from top to bottom until my fingers bled, no matter how hard I work to keep it clean and relatively tidy, the house STILL looks like a bombs dropped on it…why IS that?

I give up. Anyway, sorry, I digress…I almost got a bit carried away on a (fabricated) moanfest about housework then…  (Actually, I AM overwhelmingly grateful of the sticky fingers and the chaos and all the other stuff…long story, but according to the medical profession, I was never supposed to have a child – so I celebrate mess…I delight in it...I positively wallow in the utter disarray that is my life)

Let’s get back to the being at school (or just generally away from me) thing:

Will she be safe?

Will she have fun?

Will she stuff something in her mouth that she shouldn’t?

Will she catch bugs?

Could I possibly miss out on that first word spoken?

Will she concentrate on something/anything? I wonder.

I’d SO love to be a fly on the wall.

The feedback from her school annual review suggests that she’s quite a character….and I can believe it! I wouldn’t be surprised if the staff are all exhausted at the end of each day either.

Hannah is an ‘active learner’ i.e. she’s on the go and mooching around inquisitively from the second she wakes, to when her head touches the pillow in the evening.

I’m not complaining though…but it can be a tad draining sometimes having to be persistently vigilant and alert to every potential danger.

That’s probably the reason why I constantly appear shell shocked/frazzled/wiped out and insipid! Still, running around after the child is great for weight loss!...we always try to look on the bright side here at Broccoli HQ.

I’d have loved to have seen her when she went away on respite:  being yanked up trees, abseiling, canoeing, archery! (no eyes – hers or anyone else’s were lost, thankfully!) and having fun with her friends.

But what really saddens me, is that on her return home, she can’t tell me anything at all about her day…what fun she’s had, who she isn’t friends with anymore (well, at least until she sees them again!) or what she might have learned.

For those of you not familiar with my daughter, Hannah is non-verbal and has significant global developmental delay, so I’ve no idea what’s happened once I’ve left her in the care of others.

That’s why (and here’s where I FINALLY get to the point of this post) communications diaries are incredibly beneficial.

Most of the time, they’re absolutely brilliant:  they provide me with a brief idea of what Hannah might have done during the day, what she’s eaten, what kind of mood she’s been in.

if she’s had a snooze/slept through in the night and (importantly) whether she’s done a ‘number 2’....I’ve learned that ‘poo’ often dominates many a conversation within the special needs parenting community!...well, at least it does here at Broccoli HQ.

I can also reciprocate by sharing information on how she’s been at home, whether she’s slept well or anything else for that matter.

However, when a communications diary isn’t completed, that’s a whole different ball game.

I can pretty much guarantee that on Hannah’s return home, she’ll not be her usual perky self or something will crop up where I need to enquire as to what’s happened whilst she’s been away from me, but I can’t, because no-one’s contactable right then and there.

I think the appropriate term for that is “sod’s law”.

Take ‘The Grand Tale of The Glitter Poo Debacle’, for instance – long story, and noted in a previous blog post of mine (go check it out…it’s quite funny, even though I do say so myself…but it SO wasn’t at the time).  Hannah couldn’t tell me what had happened, there was nothing in her book to warn me to expect a ‘surprise’.  It all came as a bit of a shock.

On another evening, a mad dash to the GP’s was required as Hannah was decidedly unwell and I just couldn’t fathom out what was the matter.  My psychic powers had failed me and she couldn’t tell me what was wrong.

I felt a little useless speaking to the GP as I couldn’t tell them what she’d eaten (or consumed something harmful), if she’d come into contact with something, if she’d hurt herself or whatever.

Anyway, turns out it was probably just a virus that had been doing the rounds.  Phew!

So I can’t stress enough how important it is to have a model of effective communication between parents and professionals - especially when you have a non-verbal child. Otherwise, it can cause all sorts of bother and angst.

I (honestly) don’t ask for much…just a few brief lines to keep me in the loop…or even a quick phone call – I’m not fussy.

So, lovely professionals of the world…I totally appreciate that sometimes you have very little time in the day left to complete your diaries…but please spare a thought for us parents who will be anxiously awaiting your message on their child’s return home….and I promise (Brownie and Guides honour) to keep filling in my bit too!

My name may now be on the ‘over-anxious mummy list’, but I’m just trying to do what I’m supposed to do:  look out for my kid.

My wonderful, precious little girl.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

My Kid Loves Broccoli

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This is the journey and adventures of a rather scrumptious and incredibly inspiring little girl called Hannah, who just happens to have a rare genetic syndrome called Cornelia de Lange syndrome, but whose favourite food is broccoli (hence the title!)

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