when stuff just happens…

postcard red box with white text "You know... when the school groundsman just makes a new mount over the weekend for your handball machine and attaches it to your jogger for you... yeah that!  #thanksBILL you are awesome" to the left of an image of Mac's bike trailer/jogger with a brand new copper pipe mount on the front of the frame to hold the 'handball machine mesh'

Leave a comment

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

water warfare for everyone…

As luck would have it Mac attended a classmates birthday party where the ‘order of the day’ was a water pistol fight.

I knew someday Mac would absolutely NEED a water pistol, truth be told he should have had one years ago… he’s 11 for crying out loud.

It’s not that I haven’t been looking… it’s just finding the perfect combination of battery powered pistol, ease of switch adapting, wheelchair “mountability” and being able to actually buy it when I found it didn’t come together until late last year.

We were traveling overseas and so I did some “retail research” for those few elusive, but sought after, items.

And. There. It. Was.

Courtesy of quick trip into Cerritos Walmart, CA – it looked to be perfect option.

And. It. Is.

Mac gave as good as he got today at the party, he was drenched but delighted.  The kids were stoked with his ‘water pistol weapon of choice’, quite a few of these guys were in his class for the “macifications” two years ago so were also interested in how the gun actually worked and was tweaked.

SO WHAT IS IT… AND WHAT DID WE DO WITH IT?

The Fuze Cyclone Water Blaster from FUZE UK.
Image showing teenage boy riding a bmx bike with water pistol mounted on the handle bars (head & shoulder shot).  Inset pics show close up of the button control unit to press with your thumb to operate the water pistol, mounted next to the hand grip.  Additional closeup of the water pistol firing water.Designed for mounting on your bike handlebars it was a great choice for a wheelchair because:

  • it already had mounting options,
  • it already had the three key operational functions assigned to buttons,
  • it was battery operated.

Mac’s Pa undertook ‘hacking duties’ once again and got it switch adapted it for him.  He used three plugs coming out from the handlebar attachment.  Mac used a head activated switch for the fire option, his left and right options were attached to a joystick but most often maneuvered by his “wheelchair pusher”.

It was a little bit tricky to get the button component apart as it had been glued closed, but, once open and adapted it had the option to screw it back together… a nice surprise.

close up of the button firing unit with the three plugs coming out the side ready for plugging  switches into.  Small grey component with blue directional buttons and an orange fire buttonIt would be great if the Fuze team considered the option to build in some disability access as standard – they really be world leaders if they went down that path. I generally joke that switch access for toys costs three cents at build stage, three dollars if you do it yourself or three hundred dollars if you get a disability organisation involved, sadly, it’s not really a joke.

Interestingly, Fuze have quite a few products that could intersect with the youth wheelchair market.  The fact they don’t cost a fortune is a welcome relief from the usual slamming people with disabilities get around prices of products they need.

One thing to note with this particular product is many kids will find the standard buttons suitable for use without any hacking required.

Check out the FUZE UK range on the above link, there are some cool wheel lights and even a speaker and mount for your phone or media device which just might suit some wheelchairs out there.

2 Comments

Filed under Access all Areas, friends, The 'mod' squad, things that make me go "glll"

go away…

It was lunch time and Mac, having just finished eating, was heading out to the playground.

“Go away,” they said, as Miss M and Mac approached the group of boys.

For a moment, Miss M was worried – these were Mac’s fellow Grade 6 boys.

“Buuuttt,” she started, about to say ‘It’s Mac’ when they quickly clarified.

“Oh, not Mac, he’s with us, we just don’t need you.”

“Fine,” she said, feigning indignation, but secretly thrilled at their autonomy and independence.  Clearly no adults and certainly no ‘female adults’ are needed in their midst.

I was relieved to hear it.  Mac was a little upset on the second day of sixth grade, thinking he wouldn’t have any friends in his class and what that might mean.  This year is a big change for him –  it’s his first new teacher in three years.

He knew he wasn’t going to get in the same class as one of his best mates. They completely outwit/outplay/outmaneuver the teachers and don’t do any work at all… all the while looking “very busy”.  He was ok with that, he said.  But for some reason he thought all the other kids were allowed to pick a friend and he wasn’t.  I don’t think that was the case, and after actually getting his class placement, he realised he has some great kids in there and he is much happier.

It’s hard to balance the “sticking with who you know” approach in class friendships or embracing the “new kids mean new opportunities”.  Every year I have a moment of a panic – worried that he might not maintain those relationships he formed in the prior year… so far, that has been misdirected worry.

It was great to hear Miss M report back that, on the first morning after being placed in their classes, lots of the kids said: “Right, when do we get to learn how to work with Mac.” Learning about Mac’s technology, working with him is still a revered role.  If he stuck with the same kids all the time, those new kids would miss out and so would he… you just never know what allies are around the corner.

So the first week of Grade Six has been OK, here’s to a wonderful final year of primary school.

1 Comment

Filed under Access all Areas, friends, Inclusion... straight up!

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”.

5 Comments

Filed under friends, Inclusion... straight up!

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…

 

 

2 Comments

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

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

1 Comment

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.

4 Comments

Filed under Access all Areas, Inclusion... straight up!