Category Archives: the big picture

lightness + joy

They do go together… there’s scientific evidence – and now there’s SunSprite.  We first came across SunSprite on Indiegogo in their crowd funding phase.

screenshot of SunSprite website

CLICK IMAGE TO VISIT SUNSPRITE.COM

SunSprite is the first solar-powered wearable device that measures and tracks the amount of sun and light that a person is receiving. In its most basic form, it reminds you to get outside and absorb bright light, which wakes up your brain and makes you healthier!

I thought it was a great way for Mac to start thinking about managing his health (at least one portion of it) and what a great option for people in aged care or those with mobility issues in general who maybe aren’t getting access to the ‘right light’ to optimise their health.

A shot of Mac sitting in the distance in front of our giant Moreton Bay Fig tree in our garden, dappled light coming through, school uniform, black converse high tops.  Blended into the corner of the pic is a close up of his shoes and the small sunsprite device attached to his shoelaces on his left foot.

Dappled light under our gorgeous Fig Tree at the bottom of the garden.

I commented on their campaign and they asked for more information.  We Skyped about how and why a kid like Mac, with significant physical disabilities and who isn’t yet in control of his own mobility, could benefit from something like this.

As a thank you from the team, for helping them out in their development phase, Mac received his very own SunSprite when they shipped this month.  He’s now worn it for nine days and has hit his 100% mark by midday on almost every day.  Mostly he’s been wearing it on his shoes as it’s easy to remember on school days but it would perhaps be more appropriate up on his wheelchair headrest or collar – it is working ok for now though.

SunSprite also syncs with its mobile app, for us, we have it synced to Mac’s iPad. Where it will be useful is for Mac to think about how he can use the data to see if he needs to make changes in his life (with us now, but on his own when he is older).  For now school life pretty much ensures he is getting out and about with enough light each day.  But in the future, when he is responsible for directing his own support staff/personal assistants etc, this will hopefully have been a good way for him to start thinking about how he needs to be in the ‘driver’s seat’, how he should be the one making decisions based on his own data and/or experience.

Congrats to the SunSprite team… this is a great little device.

You can read more about it on their website by clicking the image below.

Image showing how Sunsprite helps you be healthier... Screengrab from Sunsprite website, click image to visit their page

1 Comment

Filed under Access all Areas, the big picture

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

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"

fridge magnet friday

There’s been times in the last nine years I have found myself frustrated by the lack of progress towards a truly inclusive society.  I found myself wondering how, after students started being included some 50+ years ago, it still seems like some ‘crazy, new age ideal’ to many families, educators and service providers.

How can it be that social change doesn’t appear to be permanent I pondered.  Why does one student make it through the gates for an inclusive life… only to see those gates close quickly behind.

Then I saw this comment via Twitter… and it all became a little clearer.

CLICK LINK TO ENLARGE

The notion of a relay makes perfect sense.  The baton has been passed by the true trailblazers of 50+ years ago to our generation.  We get to choose what we wish to add to our communities.  We decide if we want people with disabilities to live in a disempowering charity based society model… or a truly inclusive society where everyone is valued.

I am now more comfortable with the notion that perhaps my role won’t be done any time soon… but I am confident we owe much to those who fought for social justice in the 1950s up until now, our fights have been easier, acceptance is quicker… we are in OK shape, we will get there.

3 Comments

Filed under fridge magnet friday, Inclusion... straight up!, the big picture

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"

vale Mrs Young…

The irony of her name is not lost on us as we mourn the loss of a teacher at our school this week.

Too soon, too sudden and too young…  Road fatalities pay no heed to how much you are loved, needed or revered.

Anne was one of the best, one of the teachers who truly ‘get it’ and she was absolutely one of a kind.

Irreplaceable? Yes.

Leaving a legacy she can be proud of? Absolutely!

2 Comments

Filed under the big picture