word!

Click the image to head to my husband’s blog to see the latest word from Kurt Fearnley on the NDIS in Australia.

Shawn’s new blog, Disability and Media Matters, discusses and highlights the representation of people with disability in the Australian news media, and, importantly, showcases the reaction and perception of people with disability to that representation.

It highlights stories that feature people with disability, and the issues that impact their lives, and their families.

He’s a pretty impressive character, my husband, I think you’ll enjoy his blog.

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

 

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.

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.

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.

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.

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.

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?

a pep talk…

Just in case you managed to miss this the video while mooching around the ‘wide world web’ I thought I’d share.

This video certainly gets a workout at our house.  Mac loves it… and, really, what’s not to love?

It has captions so be sure to pop those on (there’s that free and fun exposure to reading I love so much).  It is funny in our house, I would be happy having captions/subtitles on all the time (I figure it is also great information for Mac) however,  Mac’s dad, Shawn, isn’t a fan of closed captions or sub-titles so they are usually on when he isn’t around and we ‘take them down when he comes home’.   Hmm, it’s really not all that exciting for a ‘dirty little secret’ is it.

Anyway… enjoy!

A big thank you to Mac’s teacher Mr B for sharing this great message with his class!
So what did you do to make the world more awesome today?

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.

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’.

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

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 .