They may just see a cute, happy kid, out and about in her wheelchair with her mama.

Just doing average things like everybody else is doing – apart from trying to dangle side-ways, head down, out of her wheelchair and looking, well, like she doesn’t belong to anybody!

I don’t know HOW she does it, but within 5 minutes of being washed and dressed and her hair brushed and looking lovely, she ends up looking like an unkempt wild child! *sigh!*

Anyway, I digress, back to the people…

They may smile at us (and that’s nice), they may go out of their way to even speak to us (and that’s lovely) but others may not – and equally, that’s OK too, because we don’t expect everyone to smile or speak or even acknowledge our existence.

Although, there have been the odd times when I’ve wondered whether I’ve accidentally dressed us both in something made out of Demi-guise fabric – like the stuff Harry Potters invisibility cloak might be made out of – given that a few numpties have actually walked RIGHT in front of her wheelchair and they’ve almost landed on her lap or I’ve nearly taken the skin off their shins with her footplate!

*tut* She’s small…but she’s not THAT small!!!

But sometimes I also see the pitying looks, or I (quite often, actually) observe parents pulling their child to one side as they walk by; a protective arm holding them close, their grip so tight that you can almost see their knuckles turn opaque, and at those times, I’ve felt the temptation to amble over and whisper, “Don’t worry Mr/Mrs Average, it’s not contagious. Honest!”

I haven’t yet…but there’s time!

I’m SO not being over-sensitive here either, because, don’t get me wrong, I’m not talking about having to walk down a sleepy Cornish lane, single file, at risk of getting squashed by a tractor (I love that place!) or a tiny little pavement that one slim person and a small pet dog could probably just about walk along comfortably.

Oh no! I’m talking about massive places.

The kind of places where you could drive a bus through – sideways!

Like parks or sea fronts or supermarkets or, well, just humongous big places with TONS of room.

Whilst my powers of observation may be on the wane as I age, I DO notice these things.

And, to be honest, it really hurts sometimes.

But I don’t ever dwell on it.

I can’t.

Plus, I don’t have time to dwell on this kind of stuff, I have FAR more important things to be getting on with.

Most of the time, I don’t consider it to be about being courteous and shepherding a child out of the way to make room for a child in a wheelchair…

I’ve never met a courteous person who scowls or frowns or generally looks uncomfortable at the same time…. it’s unmistakably about the fear of contagion/contamination/call it what you will… and, as a result, it’s all about the need for education (for the grown ups)… because, clearly, some of them lack it!

Here at Broccoli HQ, our world is colourful: Hannah has the opportunity to have contact with average kids and special kids.

And that’s great.

That’s what I want, because in our world, kids are kids, regardless of whether they have additional needs or not.

However, Mr and Mrs Average’s kids can probably do the stuff that my kid can’t or won’t ever do.

But that doesn’t really deter me from encouraging her to try new things… as long as all the right measures are in place to ensure she’s safeguarded from harm… the possibilities are endless for my kid.

But there’s a flip side to what I’m so dreadfully and inarticulately going to try to allude to here and it may be something that some people haven’t ever considered before.

I may be over thinking about this or going a bit, ‘off-piste’, but, hey, I’m allowed an opinion, aren’t I?

You see, my kid may have profound disabilities and had a ton of labels stuck on her forehead over her short life, however, there are things she can do that maybe some of her peers can’t.

Here are some examples:

My child has sight – she may not give eye contact, but she misses nothing!

She has a hearing impairment…. but she has hearing…. and she has the superpower of being able to hear a crisp packet being opened A MILE OFF!!

Well, maybe not quite so far as a mile, but you get my drift.

Hannah’s mobility may not be great…but she has it…we’ve just got to work on helping her to improve it.

She can move and squirm and jiggle about.

My kid can hold a crayon: she may not be able to write her name or draw a picture, but she can make marks on a piece of paper….or the wall! *sigh*

My kid can chew food – solid food(!), drink from a feeder cup, hold a spoon (even though she prefers using her fingers) *another sigh* She can also throw her food across the room!

Perhaps we have a potential future discus thrower for the Special Olympics in our midst!

Hmmm… *puts index finger to mouth in deep contemplation* Hannah can breathe, unaided.

My kid might not be able to speak, but I hear her; I hear her laugh… I hear her snore… I hear her grinding her teeth…. I hear those varied heavenly sing song, cooing noises that give an indication as to how she’s feeling at the time.

I hear her so much that I have to turn the volume on the telly up!

My kid can drive me completely and utterly potty when she’s a bit too over-active and not in control of her actions and at risk of having to be bundled into the car and taken to A&E to tend to some wound or other.

*Yep, another sigh!*

My kid can smile… such a beautiful, genuine, uplifting smile that says, “I’m happy, mummy…I’m OK…I’m having fun!”

So, yeah, I also count my blessings… very, VERY much.

So… and here’s where I may be over-thinking a bit here and my intention isn’t ever to rile Mr & Mrs Average or have some kind of vitriolic rant or provoke my Special Needs Mama’s and Daddies into an uprising against them – but you know what?

My kid may be able to do lots of other things that another child may never be able to do; but I’d never, EVER pull my child to one side and put a protective arm over her and grip her so tight that she can hardly breathe, for fear she might catch something – just like Mr/Mrs Average might do.

Hannah won’t come to any harm whatsoever by being in contact with a child unable to do the things she can do.

Her disabilities certainly won’t get any worse.

Her immune system won’t go into overdrive, she won’t contract anything nasty and untreatable.

In fact, despite her own profound disabilities, maybe, one day, given that she’s having contact with her fellow magical friends, even she may be able to develop a little bit of empathy and understanding for other people.

She may even learn and take the initiative herself to help other children do the things she can do.

Who knows?

It’s a nice thought.

So, if I don’t ever worry about Hannah having contact with a child who is less able than she is, why should anybody else?

Especially Mr & Mrs Average!

Food for thought stuff, eh? …or maybe not.

So, that’s all for now, my lovelies.

Thanks so much for stopping by.

Until next time.

Annie xoxo

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.

I don’t allow Hannah to eat chocolate  *gasps in absolute horror!!!*

Well, call the Confectionary Police, throw me in a liquorice cell, dunk me in molten chocolate and make me sleep on a bed of blue smarties!

“Yes, ‘Mi Lord’, Guilty as charged.

Lock me up and just throw away the key.

I am clearly THE most evil mother on the planet and deserve to be punished for my actions”.

So, as you can guess, batting off the potential over abundance of chocolate eggs from Broccoli HQ’s doorstep at Easter time, gets a bit tiresome.   “What does she want for Easter?” they ask. “Nothing, thanks” we repeatedly say.  “She doesn’t know it’s Easter and she can’t eat chocolate…it makes her ill”. “She’s GOT to have something” they say.

Codswallop!

Why, oh why (oh why!) does she HAVE to have something at Easter when:

1. She doesn’t know it’s Easter

2. She can’t eat chocolate

3. She gets treats throughout the year…and not just on Holy days or special occasions

4. She REALLY doesn’t know it’s Easter – did I say that already?

So, come Easter weekend…what do we receive?

Chocolate! ARGHHHHHHH! IT. DRIVES. ME. TOTALLY. BONKERS!

(and daddy isn’t too thrilled either as he has to scoff the lot…and he says that cheap chocolate sets his teeth on edge) I can pretty much guarantee that if Hannah’s given a sneaky piece of chocolate (not by us here at Broccoli HQ, I hasten to add!), we’ll be up with Hannah for a few hours during the night, trying to comfort her whilst she’s writhing in agony, wretching and vomiting until she’s emptied the contents of her stomach (sorry, TMI there, huh?).

I can assure you it’s not much fun for any of us.

Now, the medical profession may scoff at me for stating this, but chocolate really does set off her reflux as does citrus fruit, as teething made her really poorly…as did her jabs…and a certain antibiotic. FACT!

To be perfectly honest, I couldn’t give a monkeys what it says in the medical books, because I KNOW MY CHILD BEST.

So, is it cruel to feed her something that people perceive as a treat and because it’s a certain time of year…only for her to feel really unwell afterwards?

Erm….let me think about that…. It’s a no-brainer really, isn’t it?

So, for anyone who’s ever passed judgement at my cruel and heinous denial…are you happy for me to phone you in the middle of the night and request you come over and look after Hannah whilst she’s feeling ill….or, if her reflux persists and she needs medical investigation and treatment to address her severe symptoms, are you going to stay with her in hospital for a few days? No? Didn’t think so. So, perhaps best if you don’t bother worrying about what I don’t feed my child and have a look at what you’re eating yourself.

Ooops, I feel a mini rant coming on there, must stop!.

Now, don’t get me wrong.

We ARE extremely grateful of the thoughtfulness (ish), because its people’s way of including Hannah…and she gets overlooked at the best of times…but I’d rather people saved their money or gave it to charity instead. So, thanks, but no thanks, Easter Bunny… You may be cute and fluffy, but you’re not welcome here.  Be gone with you…just hop it!

Right, my lovelies. That’s all for this post.

Thanks ever so much for stopping by. Have a wonderful Easter, whatever you do.

Until next time. Annie   xoxo

This post is dedicated to all the Dentists and Oral Hygienists of the world.