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”.

exposure…

Last week Mac made the trek to UOW (Dad’s University) for his participation in a session on ‘exposure to people with disabilities’.

You can read about the where/what/why here on Shawn’s most recent blog post over at Disability + Media Matters.

At the end of the session we gave an extra bit of ‘secret Mac business’ to these future journos by sharing a couple of our ‘tried and tested’ tips on how to photograph a group shot when “someone in the shot”, courtesy of some ‘not so great head control’, is often looking in the opposite direction to the rest of the group.

Seems like such a minor thing (and some might say superficial)… but could a poorly considered shot be enough for that person to be devalued in the eyes of another, could it send the message that they “aren’t even aware of their surroundings” and therefore “really disabled” rather than someone simply having poor head control?

EXAMPLE ONE:  point & shoot…

Traditional shot where you expect to have the whole group ‘looking down the barrel’

As you can see, Mac is NOT looking at the camera, in this instance it actually looks like he is looking at me so isn’t too bad, but what other techniques can we use?

EXAMPLE TWO: every which way but front…

Potentially a more social and natural looking shot than the one above.  The person with the disability isn’t the ‘stand out’ as the only person not looking at the camera.  Certainly works much better when the shot is actually in focus. 😉

EXAMPLE THREE:  follow Mac’s eyes…

This is my favourite, particularly when you get a run of three or so pics in succession.   Basically, the photographer (or a buddy beside them) will tell everyone where to look based on where Mac is looking.  We have plenty of birthday cake shots with everyone looking to the same spot Mac is – which is rarely at the cake –  it’s much more fun imagining what may have had everyone’s attention when you look back years later.  Once again, the person with the disability isn’t the only one looking away, it’s much more “look, is it a bird, is it a plane…” by the entire group.

So, there it is, “Secret Mac Business” and, in the words of my husband, “consider yourselves exposed”.

Do you have any tips and tricks to share?

 

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!

 

rampage

There was an in-class assessment task recently.  Mac & his classmates have been learning about shelters and investigating the many different shelters, buildings and constructions.   The assessment involved building a shelter during class time from materials they collected at home.  There was no limit on where or what the shelter had to be – intergalactic, subterranean, subaquatic, floating were all viable options.  I wasn’t really sure what Mac would be doing instead of building and, other than collecting scrap materials/cardboard cut offs for him, hadn’t done a lot of other preparation.

I chatted to him over breakfast about the in-class task that day.  I asked him if he wanted to take in his cardboard etc and offer it to the other kids for making wheelchair ramps for their buildings – he liked that idea.  He said “yes” he wanted to do the ‘ramp thing’ more than someone building him a building.

So apparently that is exactly what he and the itinerant vision support teacher did for the assessment.  They went and offered ‘wheelchair ramping materials’ to all the other students.  Mac was assigned the role of ‘building inspector’ checking they were meeting access regulations.  I am not sure if they used any of his communication devices during this time – it would have been a good opportunity for Mac to actually be asking the questions… nothing like being ‘under the pump’ from a local government official.

From all accounts there was a wheelchair accessible cave, space station, cottage, farmhouse and skyscraper… just to name a few.

Just some more incidental learning for his classmates… can’t wait for them to be architects, builders, building inspectors, lift manufacturers and stair demolishers when they grow up.

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.

BFFs

I know we’ve mentioned Mac’s friend ‘Miss B’ a number of times before and so here’s a pic of the pair of them doing what they do best… just hanging together and being very, very cool.

I am unaware if there was prior collusion between the pair to ensure they both ended up at the swimming carnival in their aviator glasses.  Since B only got hers the day before for her birthday and Mac is reliant on his ‘oft’ absent minded mother to remember to pack that sort of thing I think it was more good luck than ‘good collusion’.

In a nice turn of events they have both ended up in “blue house” for their sporting events – Go the Blues…

Mac took his bath/shower chair which looks more like a banana lounge than a piece of disability equipment to the event – it was a good option to allow him to ‘kick back and relax’ between free swims (and it’s blue).

 

what do they mean “one size fits all”?

hmmm, seems the school beanie might need some ‘modding’ too.

Oh well… never mind.

i don’t know why he swallowed a fly…

There has been much discussion amongst K-C and K-W (the two kindergarten classes) as to why Mac can’t talk.

Connor gets the whole wheelchair thing – his Dad is in a wheelchair – but “why can’t Mac talk?” or “do the things his Dad can?”

Immy had one answer – “it is because his brain is smooshed all through his body”.  Immy has been at Day Care with Mac, she knows about his brain injury – this is her take on it.

James, on the other hand, has a different take…

“it’s because he swallowed a fly…”  ?

Connor was not convinced.  I have since filled his mum in with regards to Mac’s brain injury.

Guess we are just about due for a Q&A session with the kids.

In James’ defence his class has been reading “There was an old lady who swallowed a fly”

However, I don’t think we will go into the “perhaps she’ll die” portion of the book/song.

I look forward to answering their questions – particularly as there won’t be any parents around to ‘shush’ them.

it’s a wrap

week one ‘in review’

All in all it was a pretty good week. Mac managed all five days of full time hours with only one day time nap (day one). Considering it was close to 40°C every day this was pretty impressive.

He has some wonderful kids in his class – keen to interact and assist Mac. They are learning how to Hi-5 him, ‘scruffle’ him up, to push him back up when he is tipping out of his beanbag. There is only one who doesn’t seem particularly happy with Mac being in the class… he “hates sitting near the stinky baby” – oh well, his loss – Mac couldn’t give a hoot.

PHOTO FROM THE LOCAL PAPER IN THE KINDERGARTEN PHOTO LIFT-OUT

We have been trying different pieces of equipment to see what works. I’ve realised Kindy kids spend a lot of time on the floor. We still haven’t quite worked out the best option there – because as quick as they are on the floor – they are back up again at their desks.

Mac’s hi-low chair is pretty good – just a bit bulky for the Kindy sized desks and doesn’t go quite low enough to fit in under the extra bits on the desk.

We will have to look at getting a hi-low base for indoors. Much less bulky but should accommodate him for most of his primary years. Any suggestions?

I look forward to getting this sorted out so I don’t have to ‘lug’ quite as many seats/chairs to and from school each day.

I like that his aide is understanding the beauty of the hi-low chair option. She understands how he is far more included when he is at the same height as those around him. When they stand – up he goes, when they sit – he goes down too.  A good indicator was a pic taken of Mac’s clsas for their newsletter.  Mac’s head was cut off – this isn’t necessarily an indication of a bad photographer – more that Mac isn’t positioned in an inclusive enough setting.  We will continue to improve I am sure.

I enjoyed collecting Mac on Friday – it was the end of his first week, the end of a successful week – I was in an upbeat mood. But of course someone is always there to bring you down. Obviously someone was miffed because I was in the accessible parking spot and left me a ‘narky note’ under my wiper. I admit, I don’t have a sticker – we have never used disabled parking spaces before and my appointment with the Doctor to get the forms signed isn’t until Tuesday. So, probably, I shouldn’t have been there but I was parking where I was told to by the Head Mistress. If I didn’t have three chairs, a school bag and a child with a disability to get to the car – do you think I would need the spot? I know I am at fault because I don’t have a sticker – but please, can’t we all just be a little nicer and at least put a ‘disclaimer’ on our “narky notes” reminding people to put their stickers up or imploring them to get their stickers if they are eligible. I drives me crazy I have to see a Doctor about a ‘mobility’ issue (what a waste of their and my time) but that is another rant for another time.

All in all it was a good week. 


Thankfully this week is cool and wet – a nice change. Hmmm, Mac doesn’t have a jumper – must get on to that one soon. He has long sleeve shirts (and arm warmers if need be) – they will suffice for now.

K-C

Welcome to the Kindergarten class of 2009 taught by Mrs Collins… henceforth known as “K-C”.

What a day, what fun, what a blast!

uniforms, school lunch, school bag, wheelchair, seating system, bean bag, change bag, bibs, bandanas, teeny tiny hat…  OK, so maybe a little more “baggage” than the other kids…  

Mac’s amazing friend from ‘Pedagogy at Five’ is in his class along with some good friends from Pre-school.   His School Angels (Teacher’s Aides) are delightful and enthusiastic – there are lots of things to work out  – but I am sure we will get there.

We prepared a Cheat-Sheets-4-School for his Teacher and Aides.

Mac added a 20 min sleep to his day’s curriculum – no one seemed to mind.

All in all it was a good day – looking forward to tomorrow.

four sleeps to go…

so the bibs, trying to look like they are NOT bibs, are almost finished (why did I think I could sew?),

the pencil case (hmmm, more like suitcase) is nearly packed,

the school bag is awaiting filling,

the uniforms, recently embroidered, are washed and ready…

Mac’s  seating system has been tweaked, twisted and turned – it is now pretty comfy – he is happy sitting in it…

the excitement is building…

school starts Monday!

pedagogy at five

She came over to Mac’s desk.  She had just finished showing the teacher her new glasses which, she proudly explained, ‘she bought with her birthday money’.  

She was ready to start free activities like the rest of the class.

“Can he talk?” she asked me.   “No, not really” I replied.  “He has some sounds that mean things, you will soon learn how to understand him”.

“Why can’t he talk? she asked

I explained about Mac getting sick as a baby and his brain getting hurt.  I explained how his damaged brain has caused all all his muscles to stop working properly.  How his sitting muscles, standing muscles, eating muscles, walking muscles, talking muscles and seeing muscles no longer work properly.

She had been watching me put foam blocks into Mac’s hand and telling him about the shape and the colour.  She went and got her own block.  She gently picked up Mac’s hand and slowly turned the shape around under his hand.  She counted out the sides to him as she went.   “1 – 2 – 3 – 4 – 5 – 6 – 7   Mac, do you know what has seven sides?” she asked.  

Hmmm, even I wasn’t sure on that one…

It turned out it was a 3D foam block.  A cube with a hole in the middle and, she’s right, it does have seven edges or planes.

As she continued showing him most of the shapes in the box of blocks, with a delicate swish of her wrist as she ran each ‘plane’ along his palm, we talked about how much Mac liked noises.  She went away only to reappear with two plastic blocks to tap together to make a noise Mac would like.

Mac’s face was one of sheer heaven – it’s not something I yearn for, but for Mac it was “ahhhhh, the serenity of noise”…

Good teachers come in many guises – some in the form of five year olds.

I wonder whether pedagogy is innate or learned?