Tag Archives: cerebral palsy

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: http://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.

1 Comment

Filed under friends, Inclusion... straight up!

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?

Group shot with all looking at the camera except for 9 year old Mac.

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. ;-)

Group photo with everyone looking in a different direction.

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.

A group shot where the group are directed to look wherever the pwd is looking, so all eyes focussed on the same 'off camera' spot.

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?

 

8 Comments

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

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.BoysToiletSign

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

 

6 Comments

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

walk like an egg-gyptian…

Easter time again so for Mac’s school that means eggs-on-legs, egg-o-ramas as well as the more traditional hat parade.

The benefit of getting two years of “eggs-on-legs” means the ability to ‘recycle’ – we embraced the chance to re-use one of the ‘eggs’ from last year’s walking egg / wheelchair contraption.

Egg-gyption
This year we added an Egyptian pharaoh hat left over from a fancy dress party a couple of weeks ago, some ‘walk like an Egyptian arms’ and covered the blue pants with two pieces of fan folded A4 paper stapled together with some glitter cardboard triangles.  A final flourish of some glittery paper around the eyes and our 2012 egg was now and “EGG-gyptian”.  It was a pretty good pay-off for about 20mins worth of work.

Here’s Mac, Luca and Miss A showing some of the finest eggs-on-legs I’ve ever seen.

Screen shot 2013-03-29 at 3.49.55 PM

And a blast from the past… I found this gem of Mac (R) and Luca (L) way back in pre-school circa 2007 when they were gorgeous little four year olds.

MACandLUCA2007

I strongly believe full and authentic inclusion in the pre-school and daycare settings should be the norm for ALL children.  Too many families are buying into the idea that Early Intervention centres are where you go ‘instead of’ pre-school.  Early intervention (the action not the place) is important but not at ‘any cost’… be wary of those claiming early intervention can only happen in a segregated setting – you might just end up on an undesirable path where your child loses their rightful and valued place in their community.   I spoke about this some years back at the Early Childhood Intervention Australia conference… my stance remains unchanged.

Click the folder if you are interested in reading the paper I presented to the conference.Folder-ECIA

3 Comments

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

school swimming carnival and the “mac-stroke”…

You’ll have to excuse the ‘gratuitous self-promotion’ here.

My husband is “numero uno” on the list of ‘amazing people we get to have in our life’ – and he is responsible for the video and the ‘very sweet words’.

Shawn is a phenomenal dad, husband and friend and he is the one who thinks me ‘slipstreaming’ Mac down the pool at a school carnival is awesome…

Me? well… since Mac’s in 4th Grade, I think it’s simply “about time”.

Results for the day saw Mac manage two 2nds and one 6th placing in his swimming carnival events… He did the “mac-stroke”.

The kids were awesome (as always) and cheered for Mac, regardless of house loyalties, revered his results and were busy telling him how ‘good a swimmer’ he is LOL.

SwimmingCarnivalSpectator

Despite what we see on the video with our adult eyes, it seems I am completely invisible to the kids. My being there is of no concern or consequence. Although I did overhear a couple of kids, who obviously did see me, lamenting that their mum didn’t swim with them (cute).

Trying to go slow enough in the off-strokes was the hard bit – we were trying not to “podium” but it was a case of “swim or sink” – so 2nd place it was.  Mac was able to catch my slip-stream so most of the way I was able to kick along without having to touch him.  Obviously the faster the events the better the slipstream.

The neck-float is from Nancy at Waterway Babies – it is a larger size designed for bigger kids with disabilities.  It has proved a great option for us this summer, Mac loves the freedom it provides by being able to be in the pool ‘hands free’.

We did buy a cheap baby size version off Ebay from Hong Kong to test out while we were waiting for this one to arrive.  And, while it was OK, the WaterWay brand is noticeably better quality and a better size offering Mac much more stability and confidence to experiment with moving his body under the water.

What other tips, tricks and ideas do you have to give everyone the option to participate at swimming carnivals?

4 Comments

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

the footy draft and the kid who was ‘second pick’…

 

I know there are people who wonder why some of us fight so hard for the philosophy of inclusion to simply be the norm.

Today was a reminder of why we do what we do.  The concept of inclusion isn’t really about Mac, it’s not about me, or us as a family…   it’s for all of us, our entire community, our entire society.  It makes us all better people.

It makes us gooder

According to Mac’s teacher, this is how things went down today…

Friday is sports day and today’s activity was touch footy (touch football/AusTag/flag football/toque de futebol).

Under Mr B’s guidance the team captains get four picks each – then Mr B divvies up the rest to avoid someone being the potential ‘last pick’.

Mr B was absolutely amazed when Mac was the second pick on one of the teams.  He said, “it wasn’t something I expected – but it was awesome to witness”.

It is these little moments that make you realise what great young people we are growing by ensuring they are ALL together, authentically together.  Not as part of a program, or a unit or by special invitation for part of a day, or for certain subjects or by volunteering to be with the ‘special kids’ as a rostered job.

To these kids Mac is just one of them.  Sure, they know he has a disability… they just don’t care.

For the record… Mr B & I both acknowledged we may not have picked Mac if we were captains.  He kind of sucks at touch footy and we are both, clearly, a little bit too competitive and perhaps not as ‘evolved’ as these kids…

As it turned out he played briefly then switched it up to become a touch judge/linesman.

To be honest, I’m not sure what is funnier – Mac playing touch footy in the chariot or Mac being a linesman (bearing in mind his vision impairment).  I guess touch footy at CPS just became a ‘game of chance’.

4 Comments

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

in which Tim becomes a teacher…

So the last day of Grade 3 has arrived.  This is Tim’s last day as he has now completed his teaching degree and next year moves onto the local casual rosters with the hope of picking up a full time teaching position in the area.

We always knew we only had the year with Tim in the teacher’s aide role and, while we are sad to see him go, we know there is a bond between he and Mac that will likely stick.  I chuckled when one of the teachers told me about the boys at the class party and how Mac was eating green icing of Tim’s finger…  like it was the most natural thing on earth.

I am really proud of Tim – he has been so open to learning and embracing the mindset we share about disability.  He is going to be a very different teacher to the one he would have been 12 months ago.  It is wonderful to hear him acknowledge those same sentiments.  Tim has established some great opportunities for Mac that I believe will set him up for the remainder of his primary schooling in a very social and engaged way with his peers.

As a farewell gift for him from Mac and the class I had to sneak around to all the kids for them to give me ‘words to describe Tim’ and develop a ‘wordle’ which I then framed for him as a piece of art to hang on his wall.  He was pretty thrilled with his wordle and the kids were blown away seeing their words turned into something so permanent and lasting.

THE WORDLE & THE LADS

TIMwordleframed

TIM&MAClastdayframed

Thank you Tim for the most amazing year.  Mac will be working on learning about text messaging & emailing in 2013, and since he has your details in his iPad I expect you’ll be at the top of his list ;-).

1 Comment

December 20, 2012 · 11:44 pm

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!

 

5 Comments

Filed under Access all Areas, friends, Inclusion... straight up!, the big picture, things that make me go "glll"

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!

 

6 Comments

Filed under friends, things that make me go "glll"

liver la vida

It’s hard to know how much involvement to have in assignments when your child has no chance of doing it on their own.

A lot of the assignments to date have been more about me teaching Mac the concept of choosing topics, researching and then deciding what to include – I guess this is probably much the same for everyone.

That being said… I wasn’t overly thrilled when he brought home the requirements for his assignment on “organs”.  He had been assigned “the liver” and was to present to the class as if he was ‘the teacher’.

Ugh, the liver, I thought.  How are we going to find age appropriate stuff and avoid the obvious drug, sexually transmitted disease and alcohol damage issues that seem to feature ‘way more prominently’ on the internet than any other.

With some focussed searching we did OK.   We watched some cool videos, found some good websites.  Mac had to decide what he wanted to include in his assignment.  I showed him how to change up the information so it sounded like something he might say.

We decided to go with a Powerpoint presentation so he could progress it with his switches while ‘taking the class’.

We created his own avatar using the WeeMee Avatar Creator app (we like it because it has a wheelchair accessory).

We popped his Avatar into his CrazyTalk 2D animation software so it could speak with his dialogue.

We decided to use the Acapela-Box to download the voice.  We had to pay for some credits to use this despite having his Dynavox.  Thing is the Dynavox doesn’t really ‘hold its own’ for long tracts of speech.  It gets crackly and breaks up a bit too much for our liking.  With Acapela Box we can use the same voice he uses on his Dynavox but with greater clarity and no chance of it failing mid-sentence.

I poked around on the internet and found some pictures, bought some stock images to include and created some of my own elements.  I discussed with Mac what his images might look like, what we could include and importantly made him choose the ‘liver’ image he liked the best.  From memory… I think he over-ruled my first choice for making “liver dude”

Here’s the video version of his Powerpoint presentation
(you’ll need your sound turned on & be sure to read on after you’ve watched it).

THE LIVER by Mac Burns

Did you learn anything new?

Oh, and for those super-observant folk…
Disclaimer: no M&Ms were harmed in the making of this assignment… but, that’s not to say a few weren’t hacked ;-)  

6 Comments

Filed under Accessing the Curriculum

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

2 Comments

Filed under friends, the big picture, things that make me go "glll"

cross country: MMXII

Autumn signals the start of the cross country season in Australia.

Once again Mac’s school event was held at our home track.

A couple of Mac’s classmates convinced Mac and Tim (Mac’s aide) to run with them in the 10 years boys event rather than “the nines”.  I asked the boys if they were hoping to finish in the places to ensure a spot on the district team.  “Nah” they responded, “we usually try to finish in about the twenties”.   When asked, Mac thought that was an OK place to finish and was very happy to run with the ‘lads’.

I always remind Mac of his ‘home advantage’ (never mind the four wheels and the able-bodied ‘pusher’ he also uses ;-) ).

But when I say ‘home track’… I’m not exaggerating.   The local cross country course is literally the property next door to ours.  It’s part of my Grandfather’s old farm – now in the capable hands of my Aunt & Uncle.   In fact, Mac & his cousins are sixth generation to live on this property… not bad considering how relatively young our country is.

Mac’s aide from last year “Ms M” had a great chuckle as she realised she hadn’t given Tim the information on how to take a short cut and hide out for the middle two kms…  Oh well, they made the distance… Mac didn’t even seem out of breath.

PHOTOS: using Halftone app on my iPhone 

3 Comments

Filed under Access all Areas, friends, Inclusion... straight up!, things that make me go "glll"

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.

3 Comments

Filed under Access all Areas, Accessing the Curriculum

rallying the troops…

It’s time to make the NDIS Real in 2012

Monday, April 30 will see the biggest rally of people with disabilities Australia has ever seen join forces to ensure the National Disability Insurance Scheme becomes a reality.

From the Every Australian Counts website here is just two reasons why an NDIS is so important…

CLICK THE LINK TO SIGN UP TO SHOW YOUR SUPPORT
AND TO RECEIVE UPDATES FROM THE CAMPAIGN

Rally events will be held in six capital cities around Australia and will be a fantastic way to re-emphasise the message to the Government and the general public.

Mac is having the day off school to attend the rally.  It is important for him to be involved, to understand and to be a part of something that could be ‘life changing’ for him.

Mac, Shawn and I will be accompanied at the rally by my mum, my sister and our 15 yo nephew (also taking a day off school to support his cousin) – a couple of other willing family members have had to stay back at home and help out with other commitments (the NSW rally is 3hrs away so it’s a big day).  We do appreciate the support we get from our family and friends, their willingness to learn from us, to take the time to truly try to understand the real issues and, more importantly, their preparedness to change their own mindsets means so much.

Mac will have wheels decorated and we will be taking some banners with us.  I have added banners for others to use/share on the Inky Ed! facebook page.

Leave a comment

Filed under Inclusion... straight 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.

2 Comments

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