# Tag Archives: cerebral palsy

## puzzing intrigue

This kid does impress me at times.

OK, I know i’m somewhat biased and, as his mum, it’s my job to be impressed by him… soooo, at the risk of seeming a little ‘braggy’ i’m going to share a snippet from Mac’s recent school work.

Math(s) is still Mac’s favourite subject, it comes easily to him, he enjoys success with it and it’s easier for output than most literacy/writing based activities… so, what’s not to love?

In class Mac and his and his peers (now in 6th grade) were working on number patterns. Mac was working well and was given the first addition number pattern to complete as a warm up.

## 8, 16, 32, 64, 128

Mac typed “doubling” as his response to the teacher’s aide, ‘M’, to explain the pattern.

He was then required to provide ‘M’ with a subtracting pattern for her to try and work out, and so he typed:

## 100, 75, 50, 25

She easily identified it was subtracting by 25 each time.

But it none of this was really challenging Mac so ‘M’ upped the anti and asked him to create a really hard number pattern for her to do.

This is what he typed:

## 44, 88, 264, 1056, 5280

To quote Ron Burgundy, “well that escalated quickly”.

Seems he followed his brief… it is a tricky pattern.  Mac’s aide, ‘M’, worked on it for quite a while but he had her pretty stumped. None of the other kids in class could get it out – Mac assured them it was a proper pattern, that the numbers were correct.

Mac’s teacher, Mrs M worked it out… eventually… and in the end Mac gave the rest of the class the solution.

But it’s these little snippets and insights that intrigue us about this child.  Mac doesn’t use a calculator, it would be too tedious on this communication device.  When asked about his ‘methods’ for many things he says he “just knows it” and can’t explain his working.  Also, on his device he can only type left to right, unlike many instances in calculations where the rest of use might work right to left. So there’s plenty of times we adults are not quite sure what to do next, while Mac just keeps on doing his things his way, and yes, impressing and intriguing us as he goes.

Well, really I need to give those who love a good maths puzzle the chance to do it themselves.

But be sure to put your solution in the comments, I’ll pop Mac’s explanation he used for the class in the comments too, but don’t peek. 😉

Oh, and just so we don’t get too carried away as ‘braggy parents’, I do love the comment in his school workbook immediately following this entry which said… “Mac then dozed off in his wheelchair for a brief nap after all his work on number patterns”, seems it’s exhausting this math(s).

Way to go on the snoozing at school Macco!

## 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 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.

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”.

Filed under friends, Inclusion... straight up!

## creepy…

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.Mac was thrilled.

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.

###### 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

It 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.

## 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.