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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creepy…

looking down from above the skeleton clown head with red flashes of hair, shiny purple and orange satin shirt and one very happy boy with just his head exposed as though the clown is holding his severed head - halloween creeps.We’ve been away.  A visit to the US of A allowed Mac, among a great many other things, to enjoy his first ever Halloween in style.

As our travel itinerary was shaping up with us somewhere between Arizona and California for Halloween… we decided Las Vegas might be the place to go.  They have a street parade on Freemont Street, it seemed like a fun place to be.

Mac and his mates had done some research on possible ideas for a costume before he left (thanks Google & the “Tuesday afternoon costume committee brotherhood”).  The general consensus was that creepy clowns, blood, gore and/or maybe something with a severed head were the preferred options.  Seriously, these kids have got 11yo boy down pat…

I was a little nervous.  Creating a costume that would stack up in the US from the confines of a hotel room – that would meet both Mac’s & his mates’ expectations? Was it possible?

Thankfully, there were plenty of Halloween pop up shops available for our shopping pleasure prior to getting to Vegas.  Shawn found a fab ‘creepy clown’ balcony decoration suitable for hanging above the wheelchair to allow the skeleton clown to appear as though it was holding Mac’s severed head in its boney hands. “Hacky the Clown” (as he came to be known) was the perfect fit.two shots of Mac and Hacky the clown with a beautiful smile on Mac's face in the first image and a totally wild smile in the second.  The skeleton skull of the 'hacky the clown' part of the costume is lighting up with different led colours... totally creepy.Mac was thrilled.
hanging skeleton clown skull costume mounted above Mac's wheelchair handles so that the orange/purple satin top comes down over Mac's body exposing only his "head" so it looks like the skeleton hands are holding a head.  Mac's wearing blue pants and red clown shoes so that his body looks like it belongs to the creepy clown who looks he is the one sitting in the wheelchair, not Mac, afterall, Mac is just the 'severed head'.  Slashed face tatoos finish off Mac's look.
It worked a treat.  He was far from cute!

So many admiring glances and looks of pure joy from everyone he passed – with the occasional double take as his head moved around when they were least expecting it.  You’ve never seen such a delighted severed head.

Oh… and the creepy clown voice audio we put onto Shawn’s phone so we could ‘bluetooth it’ to Mac’s portable speaker if anyone was in earshot – well, that was more for Shawn’s and my enjoyment ;-) .

Mac certainly held his own in the parade and got tonnes of wonderful photos with plenty of other “creeps” on the night.

Mac & Hacky the clown with other creeps, zipper face guy, a horned satanic type character and a team of Hulk Hogans (wrestling legends)
ABOVE: Mac and Hacky with zipper face guy and his fluffy friend, a devilish dude + the Hulk Hogans
BELOW: Mac’s tattoo (to meet the ‘gore’ requirement), a family portrait and Mac, Hacky and Gene Simmons

profile pic of Mac's face with temp tattoo with zombie style slashes, next shot with Mac, Hacky and two goul masked parents (totally unidentifiable) and then Mac, Hacky and a fantastic Gene Simmons look alikeIt a was a fantastic night, so much fun.

The social media platform we chose for Mac to stay in touch with friends back home was firing on all cylinders with everyone loving his costume and many sharing their own creations from their own fun nights.

Thanks Freemont Street and the Las Vegas Halloween Parade… you have set the bar high.

Mac's red plastic oversized clown shoes with spotted socks laying on the crumpled bed after his big night.and there was one tired clown at the end of the night…

 

 

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lightness + joy

They do go together… there’s scientific evidence – and now there’s SunSprite.  We first came across SunSprite on Indiegogo in their crowd funding phase.

screenshot of SunSprite website

CLICK IMAGE TO VISIT SUNSPRITE.COM

SunSprite is the first solar-powered wearable device that measures and tracks the amount of sun and light that a person is receiving. In its most basic form, it reminds you to get outside and absorb bright light, which wakes up your brain and makes you healthier!

I thought it was a great way for Mac to start thinking about managing his health (at least one portion of it) and what a great option for people in aged care or those with mobility issues in general who maybe aren’t getting access to the ‘right light’ to optimise their health.

A shot of Mac sitting in the distance in front of our giant Moreton Bay Fig tree in our garden, dappled light coming through, school uniform, black converse high tops.  Blended into the corner of the pic is a close up of his shoes and the small sunsprite device attached to his shoelaces on his left foot.

Dappled light under our gorgeous Fig Tree at the bottom of the garden.

I commented on their campaign and they asked for more information.  We Skyped about how and why a kid like Mac, with significant physical disabilities and who isn’t yet in control of his own mobility, could benefit from something like this.

As a thank you from the team, for helping them out in their development phase, Mac received his very own SunSprite when they shipped this month.  He’s now worn it for nine days and has hit his 100% mark by midday on almost every day.  Mostly he’s been wearing it on his shoes as it’s easy to remember on school days but it would perhaps be more appropriate up on his wheelchair headrest or collar – it is working ok for now though.

SunSprite also syncs with its mobile app, for us, we have it synced to Mac’s iPad. Where it will be useful is for Mac to think about how he can use the data to see if he needs to make changes in his life (with us now, but on his own when he is older).  For now school life pretty much ensures he is getting out and about with enough light each day.  But in the future, when he is responsible for directing his own support staff/personal assistants etc, this will hopefully have been a good way for him to start thinking about how he needs to be in the ‘driver’s seat’, how he should be the one making decisions based on his own data and/or experience.

Congrats to the SunSprite team… this is a great little device.

You can read more about it on their website by clicking the image below.

Image showing how Sunsprite helps you be healthier... Screengrab from Sunsprite website, click image to visit their page

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Filed under Access all Areas, the big picture

le Tour de Fun…

The Student Representative Council held a ‘bike day’ for all students today.  It was one of our Education Week celebrations.

Top pic kids on bikes, vibrant colours, bike helmets, bright blue school uniforms prevail, Mac in his jogger in the midst of it all.  bottom pic kids in the distance, Mac and his mate riding up to meet the crowd.

In the lead up I talked to Mac about how he might be involved. He likes being on the back of a bike in his bike trailer… we don’t do it very often, we don’t own good bikes and his bike trailer/jogger is generally left at school as it is hard to transport with the wheelchair.

But, here was a great opportunity for his mates to learn how to ride with his jogger on the back.  Our village always has groups of kids riding around the streets… it would be cool if Mac could tag along for the ride without adults needing to always be with them.

Mac and I talked to the ‘lads’ at school.  What kind of bike should we get?

I know we could have borrowed one… as I said, there’s tonnes of bikes in the village.   However, if Mac “owns the bike” it’s always available for his trailer.  We will know it’s in good condition, safe and confident it will have brakes (so often considered “optional”).

The lads knew exactly what we neeeded… a 24″ geared bike, probably mountain bike style.

Off shopping I went.  Our trusty local bike shop so often repairing Mac’s wheelchair and servicing his jogger was my one stop shop.  They had a great little bike, super light weight, they cut me a deal – we were sorted.

Mac now owns a bike!

And the kids now know they can head off with him at any stage for a ride (their leg muscles permitting).

There was not a smile bigger than Mac’s today – he was loving life sitting back while his mates did all the work.

What a fantastic day… here’s a sneak peek of what went down.

One of the kids remarked… “he’s not that heavy, it’s more your energy gets used up listening too him laughing behind you”… I guess he might be a bit distracting.

Thanks to the SRC, you put on a great day.

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mad-eye macco

Book Week 2014, a book week purists dream… no specific theme, just books, glorious books.Photo of the Mad Eye Moodie character portrayed in the Harry Potter Movies

It’s probably fitting when your name is Macdonald you pick a character with Scottish heritage for book week.  The fact that character also has a disability was really just a happy co-incidence, the reality is… it was “all about the hair”.

Mac’s choice this year was the impressive auror Alastor “Mad Eye” Moody, from Harry Potter.  With perfect hair to pull of the look Mac was pretty impressed with himself.
Image of Mac dressed up as Mad-Eye Moodie from the harry potter series, a fake false eye and large brown jacket with Mac sitting in his wheelchair.  His blonde 'bob' hairstyle finishing off the look.Time constraints (and… oh, yeah, real life) meant we didn’t quite invent a recumbent wheelchair broomstick.  Fortunately, the freezing wind was of no concern by the appropriate choice of Dad’s Driza-bone oilskin jacket keeping Mac totally snug throughout the book week parade – he certainly fared better than some of the other muggles whose costumes would have been ruined by the addition of a jacket.

Artist Impression of Mad Eye Moodies Recumbant Broomstick click image for source information

SOURCE: Harry Potter Page to Screen: The Complete Filmmaking Journey – by Bob McCabe – Harper Design – October 2011

Click this link to look back at book week’s past?

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Filed under Accessing the Curriculum, Inclusion... straight up!

when what you ‘don’t say’ means the most…

This week in NSW schools it is SASS (School Administrative and Support Staff) Appreciation Week. 

At the Monday morning assembly I managed to catch the presentation by students to our school’s SAS staff and enjoyed hearing them share their insights – all written by the kids themselves”.  I have to admit though, I was perhaps most moved by what they “didn’t say”.

white background with 5 gerbera flowers pink, red, coral, orange and yellow with green stems, green text thanks coming out of the stemOur SAS team comprises administrative staff, learning support officers (teachers aides/paraprofessionals), groundsmen, IT support etc).  Each team member was presented with a small certificate of appreciation, a beautiful gerbera flower and a small speech from different students telling them why they were appreciated.  

There were so many reasons given as to why the kids want to thank them… from getting balls of the roof to preparing newsletters, looking after the office, helping them know where to play, applying band-aids or just having a ‘chat’.  

What struck me when the classroom Learning Support Officers (LSOs/teachers’ aides/paras) were being thanked is that there was no suggestion they were there for any ‘specific or special’ student.  They were considered to be in the classroom for ALL students.  There was no singling out of who they helped and why.

This is exactly how learning support should happen in classrooms.  All students, regardless of any diagnosis or funding, should be feeling supported by the presence of an additional adult in the classroom.  They shouldn’t feel, for example that the adult is, say, “Mac’s aide”.  Sure, Mac’s high physical support needs mean he will get more support in some areas… but I love that the students recognise the aide is there for ‘all of them’.  And I love that Mac (or any student in the school who warrants funded support) isn’t identified as being ‘a kid with an adult attached’ to them.



We often reflect on how well the school has embraced and enhanced the idea of natural supports and recognising peers play a vital role in supporting one another.  I love seeing the adults who come into the school as a result of funding for identified students aren’t singled out for that purpose once they get there.

Well done everyone!

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words need not apply…

The cinema was dark… Transformers 4 was proving a fun feast for our senses.

Mac along two of his mates, W & C, had been transfixed from the start.

The other boys shared popcorn while Mac provided the odd giggle, ‘coo’ or ‘glaar’ when the intensity of the moment required it.

We were most the way through the movie when out of the corner of my eye I saw W lean in close to Mac and heard him whisper…

W:    “Mac, are you enjoying the movie?”headshot of Mac, big open mouth grin, scruncy nose, sepia print

Mac’s response was silent but offered W a facial expression not unlike this image – a big open mouth, scrunchy face response

W:    whispering again… “I take that as a yes.”

And with that he settled back into his seat as they watched the final showdown of the movie.

Verbal responses not necessary.

Authentic.  Simple.  Beautiful.

 

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