Tag Archives: cerebral palsy

‘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.

Cartoon image of a pink pig with flies buzzing around it to insinuate it's stinky.

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.

3 Comments

Filed under friends, Inclusion... straight up!

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…

image of a fridge door with a stylised note pad (red) speech bubble shape with the quote "Growing up with a
belief that it was rude to stare at people 
with a disability or impairment meant that I gradually eliminated their presence from my consciousness" Louis Lim

Icon with text: Check out more of Louis Lim’s stuff  by visiting his website.  CLICK THIS ICON TO VISIT or if you are in Queensland Lim’s “Strangely Familiar” exhibit is on at the Brisbane Powerhouse until 15 Sept 2013 free entry!

7 Comments

Filed under Access all Areas, fridge magnet friday

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).

four images in row Mac in his albert einstein costume, then a young albert, Mac again and a caricature of Albert Einstein

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…

image of safari hat. click to open postShoe image with Shoeman 2010 click to to to blog post

 

 

 

image of kids around earth image (cartoon) with people around the world 2011 click to open imageimage of trophy with champions 2012 click to go to blog post of Mac as Kurt Fearnley

 

 

 

 

 

1 Comment

Filed under Accessing the Curriculum, Inclusion... straight up!

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.

clipart image of a blueprint drawing with a ruler and pencil laying over them - blueprint sketch is ambiguous and not relevant to story - it's just an illustration

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.

7 Comments

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

fridge magnet friday…

Tanzania “gets it” it seems…

From the article “Eductation fund promotes inclusive education” by Masozi Nyirenda
The writer is a Specialist in Education Management, Economics of Education and Policy Studies.  Click the link above for the full article.  

CLICK IMAGE TO ENLARGE

Old fashioned fridge door image with a poster showing the text "Inclusive education helps to reduce discrimination, enhance cooperation, creativity, capacity building, improved communication skills, awareness of disabilities, improved support and care, and improved policies for children with disabilities and those without disabilities, parents, teachers and the general community."When you put it like that it’s hard to reconcile there are people who actively reject those benefits for themselves, their community and for the broader society.

 

 

Leave a comment

Filed under Inclusion... straight up!

happy fourth…

retro postcards greetings from Orlando & greetings from Los Angeles

We enjoyed our first ever Fourth of July in the USA last week.

Taking a weeks holiday on the way home from the Society for Disability Studies annual conference in Orlando, Florida we got to experience some wonderful times with great people both in Orlando and LA.

In true form we didn’t miss the opportunity to “pimp” Mac’s wheelchair – he was well and truly ready to celebrate in style with the rest of the USA.  A couple of flags some cut up plastic tablecloths woven to represent the USA flag on his wheels and his chair was right to go.

side shot of Mac's manual chair showing two small USA flags on each handle and the wheels with stylised/woven plastic to emulate the US Flag, woven red and white stripes on 3/4 of the spokes and blue woven with tiny white knots on 1/4

The exciting part was we actually got to participate IN the local parade with our friends and their friends who also had international visitors staying.  We helped decorate a ’66 Ford pickup, decked ourselves out in flag shirts from Old Navy and sat back and enjoyed the ride.

CLICK IMAGE TO ENLARGE

four pics inline 3 kids meeting Santa dressed in shorts and waistcoat with sleigh in background, Gina+Shawn+Mac family shot wearing USA tee shirts, Mac side on in wheelchair with two friends sitting on curb using his foot switches to chat, and the Ford truck with streamers and signs and our crew in the back for the parade.

US flag merging into Aussie flag with stylised text "thanks for the memories"

2 Comments

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

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.

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

4 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"