glare weather friends

It comes so naturally.

No grown-ups required.

Kids get it, friends get it.

On a sunny morning, waiting for the ANZAC Day march to set off, you need nothing more than your ‘glare weather friends’.

VIDEO DESCRIPTION

Shot 1: Image of Mac and his peers facing into the sun. Mac’s eyes closed from the glare.

Shot 2: a friend holding her hand up to provide shade for Mac’s eyes.

when stuff just happens…

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.
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.

It 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.

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.

it’s probably better…

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

le Tour de Fun…

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

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.

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?”

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.

 

todos com todos

everyone with everybody…

A fantastic documentary about the inclusion of children with disability in mainstream schools in São Paulo, Brazil.

While almost the entire doco was “quote worthy” I particularly like the simplicity of this translated statement by Samuel’s father…

 

“I don’t see any other model.

In the segregation model people with disability don’t learn their autonomy and people without don’t learn to deal with the difference”.
Samu’s Dad

 

This movie is part of the Why Heloisa Project www.porqueheloisa.com.br
I think I will be spending some time clicking around in that project/website in the coming days.

For our English language blind viewers I have requested an English translation… will post it here if I can get my hands on it.

todos com todos…

 

 

making the world more ALLsome

You might remember me mentioning that the “Handball Machine” was the catalyst for those “Macifications” (mods to Mac’s wheelchair) his classmates worked on last year?

The kids (Mac included) just decided one day Mac needed a way to play handball.  Their idea was to have something mounted at the front of Mac’s jogger to allow him to “play” without getting hurt.

For days, I would turn up at school with them telling me what they had tried, asking me to bring in more items to test, giving me the results on their experimentation.

Some of the failures included:

• bin lids (too hard to mount and metal)
• tennis racquets (too much chance Mac could get hit if they didn’t aim well enough)
• plastic container lids (too flimsy)
• various wheelchair trays (too big, too little, absorbed the bounce of the handball too much)

Until …

Someone came up with the excellent idea of a Crazy Catch (a ball sport reflex/catching trainer).  I was dispatched immediately to purchase one for the ongoing experiment (cost … inconsequential 😉 according to the kids)

The feedback following their ‘first trial run’ was that they felt a customised size was necessary.  Followed up by a simple “could I make that for them” (hooray for hacksaws).  A couple of cheap golf buggy umbrella holders to help hold the Crazy Catch arms in place and the odd piece of velcro was all it took to make their invention a reality.

This year their “hack” has moved onto the football field.  The net angle gets reduced a little, Flag Football tags (AusTag here in Oz) are attached on the side of the jogger to allow Mac to be ‘tackled’.  Their next planned mod includes a pouch on the front of the net to allow the ball to be passed (with a degree of skill including reverse spin or perfect placement) to allow it to roll into the pouch.

I love watching these ideas come to fruition and then evolve.

Mac loves being in the midst of it all and considers himself “quite good at handball”.  Although i’m not sure the speed and chaos of the football field won’t win him over.  Time will tell.

It is very ALLsome.

 

---

 

VIDEO AUDIO DESCRIPTION & SCRIPT

So, it's not that cool when you can't play handball with your mates.  But with mates like Mac's it's 'way cool'. At our school the kids invent mac-ifications.  That is, modifications to Mac's wheelchair so they can all do more things.  Like this handball machine.  All they needed was a bike jogger, a Crazy Catch, two umbrella holders and some velcro.  (video footage of the kids playing with the ball bouncing off the front net).  Pretty awesome don't you think?    Just goes to show... when ALL means ALL, we make the world more ALLsome.

swim like you’ve never swum before …

School’s in for 2014 which means swimming carnivals are on the agenda across the district.

As per last year, I braved the pool to help Mac with his “Macstroke” races, so he could get some points for his sports house.  Together we swam the 11-year-boys breaststroke, backstroke & freestyle events…

then this happened!

Two of his mates decided they wanted to swim with him in the last race of the day and negotiated with me to resign my position on Team Mac.  With Mac now in 5th grade, I am guessing there’s a very good chance I won’t get a ‘look in’ next year, if today’s success is any indication.

There was also significant desire from Mac’s sports house Captain to include him in the relays, but with a few too many kids making themselves available we opted for the free swim at the end of the day. After all, he’d already competed in every other event possible.

What a wonderful day, what a wonderful sight to watch Mac and his two mates compete as a team.

Who’d want it any other way?

 

you know your commitment to inclusion has been worth it when…

Today, on arriving at school I found out Mac’s aide would be arriving a bit late.  Mac also had a fill in teacher (but one who has been around the school a fair bit).

What I LOVE…
there was NO suggestion I needed to hang around until the aide arrived.

And better still…
when I offered to hang around they reconfirmed that it was ‘totally unnecessary’ so I happily went on my way.  Mac just settled in for roll call with the rest of the class while a couple of kids busied themselves setting up his gear ready to start work.

One of Mac’s IEP goals has always been ‘to become an independent learner with the long term goal of aide support needed only for personal care and not for meeting his education needs’.

It’s one of Mac’s more powerful IEP goals for a number of reasons:

• It sends a message to Mac that he has a role to play in his own learning and removes the suggestion he “needs an aide” from his world.
• It shows we have confidence in, and high expectations for, Mac.
• It helps ensure the teacher takes greater responsibility for Mac’s learning.
• It provides room for Mac’s peers to really learn how to work with, and advocate for, Mac in the absence of another adult (aide).
• It allows the aide confidence to constantly strive to become redundant in their role or, at the very least, invisible in their role.
• And it removes any possibility that threats around ‘withdrawing or reducing aide support’ can be used as a  power play by Principals or education departments.   If that is ever suggested you can simply say “fantastic, a step closer to our IEP goal, what a great opportunity!  What will we need to adjust in the classroom to allow this to work well for the teacher and students?”

A typical school day for Mac has a period of half an hour where where no aide is in the classroom.  During the lunch time period the aide was helping develop and facilitate more inclusive opportunities for Mac which has proven successful and has allowed her to now assist other students who actually need more help with the chaos of the playground instead.

So Mac is on his way in meeting that long term IEP goal… days like today only confirm this.

‘pig smell’ and why it’s worth fighting for…

I was collecting Mac from the school excursion at the local zoo and was met by Mac and his mate K.

K:  “Mac smells like pig smell” he said in a manner that ‘implied’ I should consider this a good thing.

Image courtesy of cartoon-clipart.com

I admit, I was a teeny bit worried.
Let’s face it – no one wants their kid to be known as “Smelly” or “Stinky Burns” or (deep breath in) “Pig Smell”.

Me:  “Oh, OK then – is that good?” I asked wincing just a tad.

K:   “Yeah! It’s awesome” he confirmed.  “Mac couldn’t reach the pig to pat him so I leant over the fence and patted him then wiped the pig smell on Mac’s hands and arms so he had some too”

Me:  “Yep, you’re right – that’s cool.”

So there you have it…pig patting by proxy, sharing pig smells & including your mate.
Yep, that’s what we fight for.

fridge magnet friday…

I often hear parents of children with disabilities voice concern over people staring at their kids… but is the alternative better?

Louis Lim’s powerful observation makes me absolutely sure I will continue to embrace any prolonged gazes cast towards Mac.   I don’t ever want him to be invisible to his community, invisible to our society or to be “eliminated from our consciousness”.

So I guess I offer a word of caution to those who have difficulty accepting the ‘stare’. “Be careful what you wish for”, there might just be way more at stake if a stare, a sidewards glance, a gawk  or an outright ‘gape’ is eliminated – invisibility is a poor alternative.

Check under the fridge for more information on Louis Lim…

mac = albert

Book Week 2013 and the focus is on space.  I gave Mac a few options for his book week character based on things we already had ‘laying around’ the place.

To his credit he picked the more obscure option – but potentially easiest for me – in Albert Einstein.

He owns a cool Einstein tee-shirt courtesy of a recent trip to the Griffith Observatory, regularly gets around in some star pattern pants when not in his school uniform and he was pretty certain that had red converse hi-tops been around when Einstein was a kid… that’s what he would have worn.

Add some silver and white hair spray, a fake moustache and brows and, there you have it, Mac = Albert (yep, that is all Mac’s own hair).

I particularly loved watching the kids find out who Mac ‘came as’ then, share that with other kids as though it was the most obvious thing in the world, busily telling anyone who would listen “look, Mac came as Albert Einstein” or “did you see Mac? He’s Albert Einstein”.

I did buy Mac this book from the “I Am” series which we will read in the coming days on the Kindle App on the iPad.

I realised I had some of my own space/time continuum  failings as I tried to remember what Mac had done for book week each year since Kindergarten.  Thanks to some past blog posts & a Facebook post I was able to look back and see just what we actually did in those prior years.

CLICK THE ICONS TO CHECK OUT THE GHOSTS OF BOOK WEEKS PAST…

 

 

 

 

 

 

 

 

the lost boys…

Mac finally had his 10th birthday party – some two months after the actual event.  We haven’t done a formal birthday party since kindergarten, so we figured it was about time and double digits is always call for celebration.

After much debate, the WHO, WHAT & WHEN was settled.

the who…

all the year four boys (28) in total with 20 coming out for the fun

the when…

dates were negotiated with others planning similar festivities around the same time

the what…

activities were discussed, plans hatched and invitations sent

CLICK IMAGE TO ENLARGE

The party started with a bike ride.  Mac’s bike jogger was attached to Shawn’s bike, and off they went.  All but three of the kids had bikes so those guys took the iPad and filmed the ‘riders’.

A treasure hunt was next on the agenda.

We set up the treasure hunt so that Mac’s could have his iPad using Proloquo2Go (P2Go) speak the clue.  When the kids arrived at each location the clue envelope simply pointed them to the next colour clue Mac was required to give them.  What worked particularly well was that it didn’t matter how far ahead some kids got, they needed to wait for Mac and his push-buddies to arrive before they could move on.  We didn’t do teams it was an “all for one and one for all” type of event.

Here’s how it worked with P2Go, the clues and the audio (a bluetooth speaker made it loud enough for all to hear).

CLICK VIDEO TO RUN (FULL SCREEN AVAILABLE)

So, I wonder, would you have found your way?

With some daylight remaining before the bonfire lighting we decided to give the “paint bomb catapult” a go.  We had set up a water balloon catapult with the plan to pelt a 1m x 1m canvas with paint filled water balloons fired from the catapult.  It might have worked… if we had some better shots and some harder timber behind the canvas.  Instead, we reverted to 60ml syringes, paint tubes, cups and 20 kids (channeling Lord of the Flies on occasion) to decorate the canvas.

While Mac can’t do any of this physical stuff (until I build that switch adapted, self loading catapult) what he does get to enjoy is an amazing artwork, made by his mates, which will hang on his wall above his bed.

The weather stayed fine and the wind didn’t pick up too much. So, the bonfire was lit, sparklers were had and bellies were fed.

We had an awesome day and were pleased to be able to give Mac a great party, but also thrilled to let all the kids enjoy the same sort of stuff I got to do as a kid growing up here on the farm.

So the next one isn’t needed until 16, right?