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Disability: It’s not contagious…honest!

Disability: It’s not contagious…honest!

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 (God, 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’s 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 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

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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