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.

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.

 

‘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.

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?

the society I see… is the society for me!

I watch one of Mac’s classmates, “C” scurry back into the room after the bell had gone.

“Have you got one of those wheelchair sheets?” he asked the teacher, “I’m taking one home for my Dad.”

‘What’s a wheelchair sheet?’ you ask …

Well, it seems the kids are working on inventions and mods for Mac’s wheelchair at the moment, some work is going on in class… others are taking it home to keep working on.  But “C” decided his Dad will probably have some good ideas on how to make Mac’s chair work for soccer… C’s dad also uses a wheelchair.

I had a good chuckle with C’s mum about the fact her husband is now getting homework.

But… let’s just think about what is going on here.

Mac’s peers and Mac are designing wheelchair modifications and activities to make it possible for Mac to do more stuff WITH THEM.

I’ve seen a couple of the blueprints.

There’s a multi-net cricket catching contraption, a catapult style bowling attachment (yay for the girls for finally coming up with a catapult) and one of the boys is working on how to attach the class carpet sweeper to Mac’s chair, so he can help out with class chores.

Part of this ties in to their “Awesome in August” class challenge, but much of this innovative thinking has followed some of the other kids designing a way for Mac to play handball with them in the playground.

The handball idea was the kids’ initiative.  They do seek out our assistance (but generally only when they need me to buy something LOL).

This is our future generation, this is the society we get to look forward to.  A society where where inclusion and innovation reign supreme.

So why would anyone want less than this for their kids?

Why do people choose segregated schools, segregated classrooms or segregated activities?  Why don’t they want what is on offer in a place where “all means all”, where disability “value adds” and where innovation, problem solving and broader thinking is the norm?

I can see the society I want my son to grow up in, and I look forward to it.  I’m not convinced that the other choices don’t actually weaken a society.

in which the protagonist becomes the advocate…

“That’s unjust” Mac’s classmate told the teacher.

It wasn’t a obvious or major incident according to the teacher, but Mac’s peer was entirely right.  It seems everyone in the class had just been given some sort of choice or option in class and Mac wasn’t offered the same opportunity.

Hence the declaration to the teacher, by Mac’s mate, that it was “unjust”.  Mac’s teacher agreed the student was absolutely right.  Mac’s teacher, Mr B, as he always does, took it on the chin and notched another one up to the “ongoing learning opportunities” you get when Mac is in your class.  More delightfully, Mr B, shared the incident with me, clearly showing a sense of pride that his students will speak up when things aren’t “just”.

Oh, and you might remember this classmate from this post: https://inkyed.wordpress.com/2010/02/17/a-good-friend-to-me/

Now nine years old, he has grown into a considerate, delightful young man with (clearly) an innate sense of social justice.

A good friend indeed.

the “wee three” at school camp

I could see them scooting along from the other side of the playground, three boys, one pushing Mac in his wheelchair, the other running beside.  There was a look of intent on their faces, they knew where they were headed… I had no such insight.

Across the basketball court, along the path, turn, oops steady the chair, back on the path, down another level, now heading away from me.

It’s too early for lunch, I thought… why are they headed down to the dining hall?

Across the pavement, turn again, sharp right, and then…
straight into the boys toilets.

It dawned on me… you know I have never taken Mac into a boys toilet block.  I guess you don’t when a) you are female and b) they aren’t actually accessible.

I chuckled as I thought about the fact there was no hesitation that Mac went with them, the other two (or one… who can be sure) obviously needed to go, so they all went.
I never considered part of Mac having an ordinary and inclusive life would mean going with his mates “to the dunny¹ for a leak²”.

As they were heading back into the playground Mac’s aide & I walked up to them and said, “we might take Mac to get ready for canoeing and go to the toilet” (adult code for diaper change).

“We just went” was the response by Mac’s mates in unison…

“Did Mac go?” we asked (somewhat bemused).

“Oh, nah, he didn’t, just us” they said flippantly, “alright then” they offered as they gave Mac up to Miss M and scooted back off to where they were going.

I love that they didn’t think twice about Mac being with them, I love they presumed they’d all gone since they were all in there, and I love they weren’t even the slightest bit phased by Mac ‘not going’.  It was more a case of “nah, he didn’t get his act together to go” rather than “OMG how would that even work”.

But, more than anything, I love that by being in amongst his peers Mac learns more age appropriate boy stuff than I could ever teach him.

___________________________

1. dunny: Australian slang term for any toilet/lavatory 
2. leak:  slang for urinating

 

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!

 

i swear…

 

I checked the battery of the Step by Step Communicator today.

As I pressed it to see if it was working I was thrilled to hear the last recorded message was “put some swear words on it” clearly annunciated by the voice of a nine or 10 year old boy.

So, it appears, the boys have had it out in the playground with them – I am pleased Mac is learning how to be a nine year old boy the right way.

It warms my heart to know he is being taught some inappropriate words by his peers.  And, while not ‘explicit’ in the curriculum documents I have read… I am sure it is implied. 😉

Inclusive Education… what more could you ask for!

 

the talented miss A

Mac and I had a flying visit (literally) to Orlando, FL last week.

Our mission… to collect a powerchair to start giving Mac some chance at experimenting with powered and independent mobility.  I will do a proper post in the coming days about our ‘fleeting expedition’.

As part of our trip we were able to catch up with and ‘old friend’ for me and ‘new friends’ for Mac.  Amanda and Annika are the daughters of my very good friend Julie.  We were fortunate to spend a wonderful 10 hours during a ‘stop over’ with them.

Annika and Mac are the same age (or should be had Mac not decided to start life 14 weeks early).  Miss A is a very talented young lady and was very busy completing an ‘artwork’ for Mac during our visit.

It is too good not to share (note: this is drawn from a picture in a book – not traced) and so I present…

ART by ANNIKA

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.