todos com todos

everyone with everybody…

A fantastic documentary about the inclusion of children with disability in mainstream schools in São Paulo, Brazil.

While almost the entire doco was “quote worthy” I particularly like the simplicity of this translated statement by Samuel’s father…

 

“I don’t see any other model.

In the segregation model people with disability don’t learn their autonomy and people without don’t learn to deal with the difference”.
Samu’s Dad

 

This movie is part of the Why Heloisa Project www.porqueheloisa.com.br
I think I will be spending some time clicking around in that project/website in the coming days.

For our English language blind viewers I have requested an English translation… will post it here if I can get my hands on it.

todos com todos…

 

 

swim like you’ve never swum before …

School’s in for 2014 which means swimming carnivals are on the agenda across the district.

As per last year, I braved the pool to help Mac with his “Macstroke” races, so he could get some points for his sports house.  Together we swam the 11-year-boys breaststroke, backstroke & freestyle events…

then this happened!

Two of his mates decided they wanted to swim with him in the last race of the day and negotiated with me to resign my position on Team Mac.  With Mac now in 5th grade, I am guessing there’s a very good chance I won’t get a ‘look in’ next year, if today’s success is any indication.

There was also significant desire from Mac’s sports house Captain to include him in the relays, but with a few too many kids making themselves available we opted for the free swim at the end of the day. After all, he’d already competed in every other event possible.

What a wonderful day, what a wonderful sight to watch Mac and his two mates compete as a team.

Who’d want it any other way?

 

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.

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.

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

 

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.

x-country

Yes, it’s that time of year.  Cross Country events are being held in every school just about now – no matter it is also ‘snake season’ – guess that just makes them run faster.

Mac competed (of course), he took his Chariot for the event – goes faster, looks meaner, has space to carry stuff for the other kids if needed…

STICKING WITH THE LEADERS

The kindergarten boys raced, one of the Kindy Dad’s offered to push – it was a boys race after all.   

After deciding it probably wouldn’t be fair if he won… Mac and Darren (his legs) stuck with the leader pack and pushed them along a little.

The most fascinating aspect is the kids don’t actually see the wheels, the person pushing, or the surrounding contraption.

On arrival at school the next day I was greeted by the kids excitedly telling me “Mac came second”.  

I was there at Cross Country, I took photos of all the kids, I watched him ‘race’, I cheered them all on… BUT I love that is completely irrelevant to them.

I actually don’t believe he did finish that high up in the placings but what does it matter?  As far as they are concerned…

“Mac came second”

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.

“pen” de résistance

Unshackle the artist within…

How does a child who has no independent or purposeful movement draw or colour-in on his own?  

How does a child who is unable to grasp or hold things draw on his own?

How does a child with significant vision impairment draw on his own?

It was one of my biggest concerns.  I wanted Mac to have the luxury of being in control of some of his art – I wanted him to draw on his own…

I have been harassing Mac’s Pa for a few years to make him a ‘remote control texta’ (among other things).

I didn’t need to.  Thankfully in 2007 Gwen, from RC Art, did it for us.  

Mac received his Color Bug for Christmas this year.  I haven’t been able to find them in Australia, but a friend sent it over from the USA for us.

We have modified Mac’s remote control by putting a single bar across the two levers.  This allows him to use exactly the same drive action (differential drive) as his modified electric car.  It is much easier for him to learn to use one style of switch for the same action (makes it easier for us to drive too). 

This is Mac’s Remote Controller and Color Bug

and this is his first artwork he and his Dad did in collaboration.  Mac was in control of blue and orange, and Daddy, the green.

To find out more about the Color Bug (or for us Aussies… “Colour” Bug) visit www.rcarttoys.com and watch the video.

We LOVE, LOVE, LOVE the ‘bug’

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!

When clapping is your passion… you need friends who can clap

Orientation Day number two was another successful day.  

Again we spared Mac the embarrassment of his parents going with him into the classroom and hired Di, his former aide, to escort him with the other children.

I did the same as the other parents, delivered my child to class, waved goodbye and walked away.  

I know much of this is to create an illusion to the others (parents, children, teachers) that Mac is not “super precious” and “needing excessive care”.  I do it partly for my own selfish reasons to allow my soul the fleeting sense of normality.  But mostly I do it because I can, he is in an appropriate environment and his needs are being catered for – just as they are for the other children.

The feedback was great.  Apparently, the room was full of noise and much frivolity – Mac was beaming from ear to ear.  The children were clapping to some song or game – really, does life get any better?

I know I shouldn’t look at the other children as useful commodities in Mac’s life but… when clapping is your passion, you need friends who can clap.  

Mac can’t clap, his physical impairments are just too great.  

And, why wouldn’t you wan’t to clap for your friend when his response is such joy and adoration for the loud noise you so cleverly make.  

We all like praise, even non-verbal praise is good.  

We all bring strengths and weaknesses to any relationship.  

And so far, it appears, ‘clappers’ and ‘non-clappers’ can exist happily in the same environment with mutual benefit.

It’s O Day

Orientation Day is here.  

We have been madly restoring a borrowed wheelchair (thank you “teen legend” SP) to allow this event to happen.

Of course Mac’s ‘real’ chair hasn’t arrived in time for ‘transition to school’ and (although Government officers would beg to differ) we don’t believe it is fair for a five and a half year old boy to have to attend school in a pram.  

So after three days of sewing, padding, clamping, painting, tweaking and taking said child in and out of the seat numerous times – we have it.  A stylish set of wheels but more importantly… a comfortable set of wheels.

We have hired an former aide of Mac’s to go with him to the kids’ sessions.  That way we can attend the adult sessions and he doesn’t have to suffer the embarrassment of his “parents” shadowing him.

His classmates from day care and pre-school will recognise his aide as being a useful appendage in allowing Mac’s inclusion – plus, she is far more personable than a hoist!

Only two hours to go – it’s very exciting.