Tag Archives: brain injury

it’s probably better…

“So, how big will Mac get when he grows up?” came the query from two of his 6th grader friends, J1 & J2.

“ ‘Cause we move him from his wheelchair to his jogger now you know,” they added.

Think about that for a moment … their motivation for this knowledge comes from the fact they’ve taken it upon their 11 and 12-year-old selves to lift and shift Mac to whatever chair he wants to be in. And, more importantly, obviously plan on lifting their mate when they are grown ups – they just want to know how big he’s going to be so they know they’ll be strong enough.

They were pretty content with the fact Mac is likely to always be a little bit smaller than them (potentially significantly smaller than some of these very strapping, super sporty lads).

The conversation changed tack. “So, how did Mac actually get his disability again?” asked one of them. Every so often, different kids seek more information. I gave them a quick recap, offering the odd clarification they needed along the way – they knew most of it, but clearly just wanting to sure it up in their own minds.

And then came their take on past events.

“Well, that kind of sucked,” said J1.

“But I can’t really imagine Mac any other way … he wouldn’t be him.

“And really,” he went on, “it’s probably better. If he was like us, imagine just how much trouble he would get himself into.”

My heart sang!

“It’s. Probably. Better.” Did you hear that?

Mac’s mates just ‘get him’. They know him, know he can be a villain, that he can be cheeky, facetious and, I’m sure, at times disrespectful. They’ve worked out not actually saying or acting on everything you think or feel might actually be to your benefit. It works for Mac. Just quietly, these are a couple of kids who know all too well the pain of dealing with poor choices, they’ve quite a bit of experience over their primary school years – they are awesome kids … they’re just, shall we say, “spirited”.

But this is bigger than just ‘getting Mac’. This is what happens when people with disability are truly and authentically part of their community. Disability isn’t viewed as the ‘worst thing ever’ where ‘death’ is preferable to living with a disability.

It was just what my heart needed to hear.

Considering the recent commentary here in Australia and internationally where we have been slammed by the media and the “Dying with Dignity marketing campaign” which so readily sends a message that disability is undignified and people should be able to choose death over living with a disability I feel somewhat comforted that this next generation won’t be so ignorant.

For those kids/families growing up in an inclusive community, I have a renewed sense of confidence that disability fear-mongering will not get the traction it currently does by so many in our society. In fact, I was reminded of another conversation Mac and I had with his mate K last year, when K said he “kind-of wishes he could have a tummy tube just like Mac’s so that if he was too tired to eat after footy training, or if his mum made a ‘disgusting dinner’, he could stick it down the tube”. It is quite amazing the different insight into disability Mac’s peers get compared to those adults who would argue it’s better to die than be fed via a tube.

If you want to understand why the Dying with Dignity legislation and campaigns are so dangerous to people with a disability please read this article. These people, far smarter and more articulate than me, can explain it so much better.

Disability and Euthanasia, 28 Nov 2014

So, as International Day of People with a Disability draws to a close for 2014, I take great comfort in the fact there are kids in our midst who don’t see disability as something dreadful or undignified. These kids, because there is no “us and them” where “all means all” just get disability for what it is … no big deal, or in some instances … something that might actually be “better”.

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exposure…

Last week Mac made the trek to UOW (Dad’s University) for his participation in a session on ‘exposure to people with disabilities’.

You can read about the where/what/why here on Shawn’s most recent blog post over at Disability + Media Matters.

At the end of the session we gave an extra bit of ‘secret Mac business’ to these future journos by sharing a couple of our ‘tried and tested’ tips on how to photograph a group shot when “someone in the shot”, courtesy of some ‘not so great head control’, is often looking in the opposite direction to the rest of the group.

Seems like such a minor thing (and some might say superficial)… but could a poorly considered shot be enough for that person to be devalued in the eyes of another, could it send the message that they “aren’t even aware of their surroundings” and therefore “really disabled” rather than someone simply having poor head control?

EXAMPLE ONE:  point & shoot…

Traditional shot where you expect to have the whole group ‘looking down the barrel’

As you can see, Mac is NOT looking at the camera, in this instance it actually looks like he is looking at me so isn’t too bad, but what other techniques can we use?

Group shot with all looking at the camera except for 9 year old Mac.

EXAMPLE TWO: every which way but front…

Potentially a more social and natural looking shot than the one above.  The person with the disability isn’t the ‘stand out’ as the only person not looking at the camera.  Certainly works much better when the shot is actually in focus. 😉

Group photo with everyone looking in a different direction.

EXAMPLE THREE:  follow Mac’s eyes…

This is my favourite, particularly when you get a run of three or so pics in succession.   Basically, the photographer (or a buddy beside them) will tell everyone where to look based on where Mac is looking.  We have plenty of birthday cake shots with everyone looking to the same spot Mac is – which is rarely at the cake –  it’s much more fun imagining what may have had everyone’s attention when you look back years later.  Once again, the person with the disability isn’t the only one looking away, it’s much more “look, is it a bird, is it a plane…” by the entire group.

A group shot where the group are directed to look wherever the pwd is looking, so all eyes focussed on the same 'off camera' spot.

So, there it is, “Secret Mac Business” and, in the words of my husband, “consider yourselves exposed”.

Do you have any tips and tricks to share?

 

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crrrcht… he’s still OK!

Shawn has just returned back for breakfast after his overnight at Mac’s school camp.  Mac is sleeping in a dorm room with three other boys and Shawn is in the next room… It was decided Shawn head down each night just to help out since Mac’s sleeping is still a fairly new phenomenon.

To give Mac and the boys some independence we decided to give them a walkie talkie to tell Shawn if there were any problems.  We had thought the rooms were adjoining but this wasn’t the case so the walkie talkies were a good option and the boys were keen to take on that role.

Apparently the walkie talkie conversations through the night went something like this…

9:30 PM       LIGHTS OUT

All boys in bed…
Mac pretty much asleep as soon as his head hit the pillow.

9:35 PM       FIRST CALL

Tom: crrrcht… he’s still OK. Over.

Shawn:crrrcht… OK (chuckling), how about I’ll
presume he’s fine UNLESS I get a call.

9:45 PM      SECOND CALL

Tom: crrrcht… Shawn, Mac’s making a noise
and we can’t get to sleep

Shawn: crrrcht… What kind of noise.

Tom: crrrcht…[mimics Mac’s delightful lip smacking]

Shawn: crrrcht… Oh, that’s not that a bad noise (thinking of all the dramatic noises it could have been),  maybe you guys aren’t trying hard enough to get to sleep.  See how you go if you just ignore it.

Tom: crrrcht… oh, OK then.  Over.

Shawn checked them a little while later… all sound asleep.

4.30 AM        THIRD CALL

Tom: crrrcht… umm Shawn, Mac’s making a weird moaning noise.

Shawn went in to assist.  Only to find Mac really sound asleep not making a peep.  As he rolled Mac, just in case he was a bit uncomfortable, he heard a “weird moaning sound” from one of the other beds….

Ahhh, too funny, Mac wasn’t actually the culprit.  Sid, one of his roomies, was the ‘maker of the sleep moaning sounds’.

Tom settled back in and all boys slept for a few more hours.

Well done guys – you are all kinds of awesome!

 

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Filed under Access all Areas, friends, Inclusion... straight up!, the big picture, things that make me go "glll"

rampage

There was an in-class assessment task recently.  Mac & his classmates have been learning about shelters and investigating the many different shelters, buildings and constructions.   The assessment involved building a shelter during class time from materials they collected at home.  There was no limit on where or what the shelter had to be – intergalactic, subterranean, subaquatic, floating were all viable options.  I wasn’t really sure what Mac would be doing instead of building and, other than collecting scrap materials/cardboard cut offs for him, hadn’t done a lot of other preparation.

I chatted to him over breakfast about the in-class task that day.  I asked him if he wanted to take in his cardboard etc and offer it to the other kids for making wheelchair ramps for their buildings – he liked that idea.  He said “yes” he wanted to do the ‘ramp thing’ more than someone building him a building.

So apparently that is exactly what he and the itinerant vision support teacher did for the assessment.  They went and offered ‘wheelchair ramping materials’ to all the other students.  Mac was assigned the role of ‘building inspector’ checking they were meeting access regulations.  I am not sure if they used any of his communication devices during this time – it would have been a good opportunity for Mac to actually be asking the questions… nothing like being ‘under the pump’ from a local government official.

From all accounts there was a wheelchair accessible cave, space station, cottage, farmhouse and skyscraper… just to name a few.

Just some more incidental learning for his classmates… can’t wait for them to be architects, builders, building inspectors, lift manufacturers and stair demolishers when they grow up.

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Filed under Access all Areas, Accessing the Curriculum

no limits!

This is the picture adorning the Easter gift bag Mac received from our good friends (and is now framed & hanging on the wall).

Before we arrived the kids had busied themselves creating an impressive portrait of Mac right down to some spiky hair, a rocket boosted wheelchair and a ‘vert’ ramp for carrying out some ‘gnarly tricks’

The title of the picture was “Mac the Magnificent” – how cool is that!

There are so many things to consider about ‘what’s in’ and ‘what’s not in’ the picture.

What’s in:

STYLE:
Mac has cool, coloured, and very high, hair.

SPEED:
That chair is moving fast – check out those motion lines.

SKILL:
A ‘vert’ ramp is not for the feint-hearted – I wonder, “doth high expectations maketh the man?”

SMILE:
Mac is definitely grinning in this pic – what 8yo boy wouldn’t be.

What’s not:

COTTON WOOL:
No one has thought to deny Mac the ‘dignity of risk’ – he’s not even wearing a helmet or pads ;-).

ADULT SUPPORT:
There is no sign of an ‘adult’ drawn in hovering around him.

STEREOTYPING:
Mac’s got a clear sense of style in the pic which goes some way to showing how he is perceived by others – an individual/different… sure, cool? definitely!

CLOSED THINKING:
There’s no suggestion rocket launchers shouldn’t be on wheelchairs (I wholeheartedly agree).   There is no limitation being placed on Mac.

Mac ‘the Magnificent‘… may you continue
to ‘rocket’ & roll without fear or limitation.

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Filed under friends, Inclusion... straight up!, things that make me go "glll"

BFFs

I know we’ve mentioned Mac’s friend ‘Miss B’ a number of times before and so here’s a pic of the pair of them doing what they do best… just hanging together and being very, very cool.

I am unaware if there was prior collusion between the pair to ensure they both ended up at the swimming carnival in their aviator glasses.  Since B only got hers the day before for her birthday and Mac is reliant on his ‘oft’ absent minded mother to remember to pack that sort of thing I think it was more good luck than ‘good collusion’.

In a nice turn of events they have both ended up in “blue house” for their sporting events – Go the Blues…

Mac took his bath/shower chair which looks more like a banana lounge than a piece of disability equipment to the event – it was a good option to allow him to ‘kick back and relax’ between free swims (and it’s blue).

 

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what do they mean “one size fits all”?

hmmm, seems the school beanie might need some ‘modding’ too.Mac wearing his school beanie

Oh well… never mind.

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Filed under kindergarten at last