the love letter

I found this tucked down beside Mac in his chair today.

These pair have been as thick as thieves since pre-school.  Bronte is the ‘older woman’ being in Year 2.  When she started Kindy the year before Mac her Nanna used to pick her up one day a week so they could ‘race’ into town to Mac’s (and Bronte’s little sister’s) day care centre so Bronte could ‘catch a few minutes with Mac’.

It is nice to see the relationship hasn’t ‘waned’.  Bronte decreed to her Pop some years ago that ‘she has two boyfriends, but she will marry Mac’.

So sweet.

not even a horse…

Wheelchair Attendant training started for 1-2R (Mac’s class) on Friday.

Before we started there was a couple of questions from the students.

“We’re not allowed to touch Mac’s head are we”, asked Max.

Not sure what motivated the question I replied “yes, you can touch his head”, but remained a little puzzled.

I have heard of people thinking ‘brain injuries are catching’ or being over cautious with seemingly fragile children with disabilities.  In response I tend to err on the side of “NO caution”.

Thankfully, Mrs R was able to clear up the true intent of the question.

Apparently Mrs R had told the children they weren’t to “pat” Mac on the head like a pet or baby.  So we discussed it a little further.  Mrs R asked them “do they ‘pat‘ their other friends on the head?”… “noooo” was the resounding response.

“So, if Mac is just a kid like you, why would you ‘pat’ him on the head?” she queried.

“Well, he’s not a baby”, Jack observed.

“And he’s not a puppy or kitten”, added Max.

“He’s NOT EVEN A HORSE!” Maddy proclaimed.

Head Patting 101 has been passed ‘with Honours’ by 1-2R… way to go, kids.

roadworthy?

OK, so it didn’t come as a written note, but it was a message passed on via the Teacher’s Aide from his ‘second break’ attendant.

These kids are way more conscientious than I would ever be – there’s a reason Mac should be with them and why they are with him.  There are so many learning opportunities for the children who take up the role of wheelchair attendant.

I must make sure to send in one of his bike pumps so that if need be the job can be taken care of right there and then.

I’d hate to get a real ‘road-worthiness infringement’ from the students.

the fly swatter

School Assembly started, the ground was too wet from all the rain for the children to sit, so they remained standing.

Some were fidgeting, others wriggling, some almost at attention.

One young boy from Mac’s class, L, was wriggling and jiggling a little more than most.

His mother, standing along side me sighed, with a hint of despair. “He hasn’t been still once” she said shaking her head. “It’s not natural for children to be still” I tried to reassure her.   To be honest, I don’t think my approach worked.

fast forward six hours…

A similar group of parents were waiting for the bell to go to collect the same children who had started their day with a school Assembly.

The mum of the ‘wriggler’ came up to me, a twinkle in her eye. “You’ll never guess” she said laughing. “Mrs R overheard me scolding L, for not keeping still in assembly, as they were walking back to class”.  ”She apologised for the confusion, and explained that she had asked L if he could shoo any flies out of Mac’s face during assembly”.

And so L did.  He was conscientious and committed to the task at hand.  He shooed and he flicked and he whooshed and he swiped.

It’s just really hard to be still when you are on ‘fly swatting duty’.

what happened?

He couldn’t have been more than three years old.  I watched him as he discreetly looked out of the corner of his eye, checking, peeking, stealing another glance.

He sidled up to Mac, this time for a closer look, him standing, Mac sitting – they were almost nose to nose.  A perplexed look formed on his face, something was clearly amiss, he needed to know…

“What happened?” he asked me with wide eyes and hands upturned.

“Which bit?” I queried, let’s face it… it could have been so many things.

“He hasn’t got any teeth in the middle…” he said with concern in his voice.

“You know, you’re right”, I laughed.

It became clear, the wheelchair, the lack of mobility and independent movement, the not talking, the not seeing were all completely inconsequential and totally irrelevant, this three year old was simply fascinated by the fact he was missing his two front teeth.

I explained as basically as I could to this little boy how when you are about six or seven your first teeth get replaced by another bigger set.  I didn’t want to scare him so only touched on the strange tooth fairy who pays you money for your teeth when they fall out of your head.  Then his sister joined the conversation and showed her little brother how she had her new second teeth.

We have had two more youngsters querying the lack of teeth – I guess since Mac is at their eye level, they notice it a bit more.

I haven’t checked to see if ‘all Mac wants for Christmas is his two front teeth, his two front teeth…”

second meeting

The second meeting of the Wheelchair Attendant Licensing Group was held yesterday.  Once again we enjoyed good attendance with 25 students making the ‘return visit’.

Many excellent ideas and interesting discussions took place about the zones and safety rules.  They were very sincere when posing their questions and ideas – this was a serious task they were undertaking.  There was even forward planning and goal setting for Mac to one day be able to be dropped of at the “kiss and drop” zone at school where he would be met by a student to assist him.  We have decided this might be possible once Mac learns to ‘blow his Mum (me) a kiss’ (I would accept a raspberry) on drop off – which only cements the resolve of the students to teach him to blow a raspberry.

The majority of sixth graders didn’t return as they have just worked out since they are only at school for another two weeks they might miss out on getting their license – some are a little ‘miffed’.

Our Regional office of DET have offered to supply the ‘all important lanyards’ for the students getting their licenses.

The next step is for me to pull together all the feedback and information the students submitted into a format they can use for learning and design the questionnaire for the students to complete.  Of course I will try to develop this using Universal Design for Learning concepts so as to not make a hypocrite of myself and ensure all students can access the information in a format best suited to their style of learning.

We are planning on running the ‘First Assessment Program’ next Thursday for the Stage 3 students.  Thursday is International Day of People with Disabilities and all students agreed this was an appropriate day to start this process.

When we talked about IDoPWD one of the girls cheered “yay, my brother” another, “yay, my mother” and one of the boys, “yay, Mac” – it made me realise it is important to allow others the opportunity to celebrate their friends and family members and the diversity they bring to their lives – it gives them a chance to be ‘loud and proud’ with the backing of an internationally recognised day.  Sure it would be nice to get to the place where we no longer need to have IDoPWD but for now I can see the benefit for these kids.

Oh, and the obstacle course… still at the concept stage, I guess it will be sorted by Thursday – but water has been confirmed as a compulsory element to the practical test… of course!

wheels for every occasion

Today was the annual Book Fair at school.  The theme of the day was ‘safari’ and everyone was encouraged to dress up.  And so they did, there were lions and tigers and bears [oh my]!

Our new wheel covers in honour of the day…

Cute jungle animals running round one wheel and, on the other,
a fearsome tiger claw bursting through…

Mac was ‘fitted out’ in full khaki, pith helmet and the obligatory crocodile strung across the ‘bow’ of his wheelchair as a handy footrest.

He came home with a ‘haul’ of four new books courstesy of Mum’s credit card.  If only the publishers (all publishers) would make picture books available in TRUE eBook format so he could access them himself (ie with picture and text support, an option for adding your own audio and the ability to use ‘switch’ or ‘touchscreen’ technology to access them).

NAIDOC week ’09

NAIDOC celebrations are held around Australia in July each year to celebrate the history, culture and achievements of Aboriginal and Torres Strait Islander peoples.  All schools have celebrations and events planned – this year’s theme was Honouring Our Elders, Nurturing Our Youth.  

Our school had a ‘doing things together’ day planned for the Thursday.  The kids were encouraged to dress in Red/Yellow/Black clothing to represent the colours on the Aboriginal flag.  That bit was easy, black skinny jeans, red raben shoes, yellow’n'red hoodie & a red vest… sorted (although we really should have sent Mac to school upside down in his chair as his colour scheme was the wrong way round for the flag).

However, while Mac’s wheelchair wheel covers are very cool – they represent the SIOUX indian tribe.  It seemed odd to have indigenous north american symbolism on his wheels during NAIDOC week. 

The solution… new temporary wheel covers.  

Dad and Pa were tasked with undertaking the transformation (I was away in Sydney) – they did a great job.  We had found Aboriginal Art wrapping paper which was then cut and covered in clear contact and attached to the wheels.

A huge success – apparently lots of the kids wished “they could have a wheelchair too so they could change the wheels”… ah, funny what you think is desirable when you are a kid.

We have retained the covers for the time being – they do look good.  I am sure I will be told by Mac’s peers when it is time for a change.

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?”

Izzy had one answer – “it is because his brain is smooshed all through his body”.  Izzy 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.

it’s a wrap

week one ‘in review’

All in all it was a pretty good week. Mac managed all five days of full time hours with only one day time nap (day one). Considering it was close to 40°C every day this was pretty impressive.

He has some wonderful kids in his class – keen to interact and assist Mac. They are learning how to Hi-5 him, ‘scruffle’ him up, to push him back up when he is tipping out of his beanbag. There is only one who doesn’t seem particularly happy with Mac being in the class… he “hates sitting near the stinky baby” – oh well, his loss – Mac couldn’t give a hoot.

PHOTO FROM THE LOCAL PAPER IN THE KINDERGARTEN PHOTO LIFT-OUT

We have been trying different pieces of equipment to see what works. I’ve realised Kindy kids spend a lot of time on the floor. We still haven’t quite worked out the best option there – because as quick as they are on the floor – they are back up again at their desks.

Mac’s hi-low chair is pretty good – just a bit bulky for the Kindy sized desks and doesn’t go quite low enough to fit in under the extra bits on the desk.

We will have to look at getting a hi-low base for indoors. Much less bulky but should accommodate him for most of his primary years. Any suggestions?

I look forward to getting this sorted out so I don’t have to ‘lug’ quite as many seats/chairs to and from school each day.

I like that his aide is understanding the beauty of the hi-low chair option. She understands how he is far more included when he is at the same height as those around him. When they stand – up he goes, when they sit – he goes down too.  A good indicator was a pic taken of Mac’s clsas for their newsletter.  Mac’s head was cut off – this isn’t necessarily an indication of a bad photographer – more that Mac isn’t positioned in an inclusive enough setting.  We will continue to improve I am sure.

I enjoyed collecting Mac on Friday – it was the end of his first week, the end of a successful week – I was in an upbeat mood. But of course someone is always there to bring you down. Obviously someone was miffed because I was in the accessible parking spot and left me a ‘narky note’ under my wiper. I admit, I don’t have a sticker – we have never used disabled parking spaces before and my appointment with the Doctor to get the forms signed isn’t until Tuesday. So, probably, I shouldn’t have been there but I was parking where I was told to by the Head Mistress. If I didn’t have three chairs, a school bag and a child with a disability to get to the car – do you think I would need the spot? I know I am at fault because I don’t have a sticker – but please, can’t we all just be a little nicer and at least put a ‘disclaimer’ on our “narky notes” reminding people to put their stickers up or imploring them to get their stickers if they are eligible. I drives me crazy I have to see a Doctor about a ‘mobility’ issue (what a waste of their and my time) but that is another rant for another time.

All in all it was a good week. 


Thankfully this week is cool and wet – a nice change. Hmmm, Mac doesn’t have a jumper – must get on to that one soon. He has long sleeve shirts (and arm warmers if need be) – they will suffice for now.

of course it’s not perfect

While Mac is having a lovely time at school it is disappointing to see the NSW DET as the ‘weak link’ letting their schools down.  Sure the accessible toilet has been built but the change table and hoist were not installed and there is some other problem (I think, haven’t asked) relating to powerpoints near water outlets.

Honestly, DET need to be better at this.  There is no excuse for the equipment not being ready and there is certainly no excuse for buildings not being ‘fitted out’ in accordance with Australian Safety Standards.

 If Mac was a larger child and we hadn’t made alternative arrangements – he would have been excluded from school – and I probably wouldn’t be ‘so understanding’ about it.

That being said… if anyone from DET is reading and wants us to review the forms/submissions completed on our school’s behalf for the required change facilities to see if there is any feedback or suggestions we can provide to ensure the next child has safe, timely and appropriate access at school… then we are happy to do so.

On the outside the toilet block is great, ramping is good, facility matches the rest of the buildings in its block.  I am not 100% sure why the bollards are so close together (can’t fit the chair through) but assume it is to stop the potential of a ‘runaway chair’ – there is an alternate route to the classroom/changeroom that doesn’t add too much time – but it isn’t a direct route.

a WHAT panda?

x:pan·da   (ɛks – pān’də)
n.

1. exceptional multiadjustable dynamic seat system designed by R82 in Denmark
2. school chair of choice for Master Mac
3. supplied to us by PADP the NSW Government prescribed appliance scheme – this was our first piece of equipment supplied by the Government… it took five years just to find a seat Mac could cope with.

When it first arrived I worried about how heavy it was (over 20kg), how clunky it might look.  Would I ever work out all the levers and options and would the teachers and aides cope with it.

The good news…we love it.   It is easy to push, we love the fact Mac can ‘grow and shrink’ depending on his audience.  If his classmates are sitting then standing… he can too.  

We chose an outdoor hi-low base – it copes with rough ground well, has a good brake and is really stable.  The seat can click into different bases so we will start saving our pennies for a lighter weight option for lifting in and out of the car and greater flexibility and options for different terrains.

the x:panda out of its natural habitat

Sure, we have a few changes we would like to see – hah, I always do (who doesn’t) but for now we are happy in our choice of wheelchair for Mac. 

In the meantime I will send my list of adaptations, changes, options and ideas to R82.  For starters we thought we would like a really light weight mobility option with power, a springing/rocking/spinning/bouncing  adapter for in the playground, a carseat mount with ISOfix fittings, a hoisting option for the chair (not the child) and/or transfer system from going from one base to another without taking the child out of the chair and laying them on the ground.  None of which exist…  oh well, we can only ask.

this MIGHT be interesting…

My niece (9yo) was telling me about a girl she met at Gymnastics. They are same age so were chatting to one another between the breaks. They were talking, among other things, about school – they attend different schools. This girl, it turned out, goes to the same school Mac will be attending.

It was interesting to hear how this fact transpired. The other girl had mentioned a ‘disabled boy’ was starting at their school this year. There was no malice, it was just a statement of fact – maybe a bit of ‘one upmanship’ or simply making sure her conversation was peppered with interesting facts.

However, the most interesting part to me was my niece’s response…

“Oh, that MIGHT be my cousin, does he have a green wheelchair?”

What I love about the view from my niece’s world is that it isn’t a ‘given’ Mac is the only child in a wheelchair who could be going to the school. It might be him, there could be more than one, but he would probably be the only one with a green chair as she thinks more would choose red, blue, purple or pink before green.

They ended up deciding it probably was her cousin, he likely was in a green wheelchair and that it was kind of cool to know someone else who knows him.

Inclusive education is becoming more normal, more average – soon it will simply be ‘education’.

A fun first Orientation Day

 

got wheels, got friends - who needs more?

 

Who would have thought that a little boy who can’t walk and can’t talk would be such a source of strength to his friends.  That you in your wheelchair is a great place for your friends to hang onto and walk alongside when they are feeling nervous.  That you in your wheelchair is the constant, the familiar, the norm.  That you are their safe haven.

To the children who have never met you before you were an object of their curiosity, but to your friends who were alongside you, playing with you… you were just Mac.  I don’t think it will take long for you to be ‘just Mac’ to all your classmates and in time, your entire school.