a good friend to me

As I collected Mac from school yesterday one of his classmates came up to me.

“You know, Mac is a VERY good friend to me”, he told me.

I smiled . “He tells me you are an AWESOME friend to him, you guys are lucky to be in the same class.”

What is most amazing is that this young boy is the same boy who, in week one of Kindergarten last year, proclaimed he “didn’t want to sit near the stinky baby!”

This boy had just repeated Kindy and I knew he was feeling a bit out of sorts, so I made sure I always put Mac (aka stinky baby) on the other side of the group to him.

Because the class was 50% of Mac’s peers from pre-school and daycare noone else would succumb to the ‘stinky baby’ line – Mac was their friend.  It only took a few weeks and he was interacting and enjoying Mac’s company – courtesy of some fine modeling by his classmates.

I never worried about it at the time – because someone told me a long time ago that…

“often your greatest protagonists become your greatest advocates… if you just give them time”.

How true that insight was.

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chucking a sickie?

Mac stayed away from school on Wednesday.  There was a dreadful dust storm and we decided that two days in the dust for someone with potentially ‘titchy lungs’ was not a wise move.

So Mac stayed at home.  We snuck out briefly to get Mac a long overdue haircut.  (If kids didn’t have wear hats at school it would be fine, a good slab of hair product to keep it high and spiky works a treat… but when you have to put the obligatory school hat on your head and then it goes flat and pokes you in the eye.  On weekends he was able to get around with ‘mad’ hair, not so at school)

Thursday the sky was clear and school was on the agenda.  Mac wasn’t enjoying breakfast but we thought he was just tired.  He started to get quite distressed so I picked him up to give him a hug and he was boiling hot… a raging temperature.  So… no school Thursday.

Friday he was still spiking some temps with no other symptoms so yet again, a day at home.  

We did have to call in at the school on Friday afternoon to collect one of the other kids and pop round to her house.  As we wandered over to the playground some of his classmates spotted him.  Out of the classroom ran about eight of the Kindy kids, checking up on their friend, telling him they missed him, checking he wasn’t too sick, and determining just what, in fact, the actual illness was.  Mac was grinning from ear to ear not looking one bit sick.

When bell rang his ‘posse’ of senior friends spotted him, over they ran, checking up on him.  When they asked him if he was sick he gave the most evil smile as if to say ‘nuh, just pretending’.  So they now think he was ‘wagging’ which apparently is pretty cool.

The temps have now turned into sinus and hayfever, most likely a result of the dust.  He is a bit miserable so here’s hoping he is well for Monday.  He misses being at school as much as the kids miss having him there.

‘gotcha’

The school system is not completely without hope.  Just as I believe much of the problem in DET lies at a grass roots attitudinal level…

I also know the silver lining is found in the same place.  NSW DET has some amazing teachers who simply ‘get it’ when it comes to teaching & including children with additional support needs.

Mac’s teacher for Term 2 and Term 3 is a recent grad, and, let’s face it… his class is not a ‘walk in the park’.  Mac, with his multiple, severe, complex disabilities is not the only child with additional support requirements in their class of 23 children.

It is wonderful to see her embrace this challenge – a lesser mortal may have run a mile.  

Miss A is a great teacher and this experience so early in her career will ensure she goes on to become a phenomenal teacher.

What I love most is seeing the development of the relationship with Mac and Miss A go from guarded uncertainty, to slight wariness, to reasonable comfort and finally, what is now a full on ‘gotcha’.  

Miss A and Mac sent a text message to one of Mac’s aides the other day.  The text went something like this…

“Dear R, I have just snuck over to Miss A’s desk to use her phone while she is busy with all the other kids.  I just want to send you a very Maccy Moo Birthday Wish.  Love Mac”

What I love about this wasn’t just hearing how excited ‘R’ was about receiving it. 

I love Miss A understands that these moments do need to be facilitated, but that doesn’t make them fake.  

It shows her recognition and respect for Mac by providing him a delightful one on one opportunity with her, his teacher.  She said he loved doing it – he knew they were up to something tricky.

Often kids with Teachers Aide supports miss out on ‘one on one’ opportunities to interact with their teachers – Mac’s teachers have been excellent at ensuring this isn’t the case.

Oh, also… we know Miss A is ‘fully got’ because she has had the ‘Mac running & talking’ dream – that is more impressive than the ‘Mac walking’ so many others have had.  

Now there’s an IEP goal if ever I saw one…

bleary-eyed superhero

It was a day worth celebrating – 100 days of Kindergarten!

Party fever was in the air.  Zero the Hero was due to visit.  Everyone was taking ‘zero shaped party food’. 

Mac, well he was just a bit weary.  100 days is a lot of days to have to be dragged out of bed when you would rather be sleeping – he ‘channels’ teenager very well. 

Mac, like many children with brain injuries, believes sleeping is optional.  It certainly shouldn’t occur under the cover of darkness, and as far as Mac is concerned, the most appropriate time for sleep is between 4am and 11am.  This doesn’t auger well for the standard school day (nor the sanity of his parents). 

So despite the excitement of wearing ‘superhero’ clothing rather than school uniform, having a new zero chest-plate harness to finish off the red & blue outfit and taking zero shaped lollies made into flowers on toothpicks… it took a while for the bleary zzzs to leave.

It was revealed a bit of chocolate at first break had him sparking up – he does love the chocolate.  By the time I collected him at the end of the day the sugar highs had kicked in and he was his normal, wild little self.   He was a good kid though, he did eat all his lunch.

If only school was a party every day – oh, that’s right, for Mac… IT IS!

the ME project

Term 2 saw our first official ‘project’ due.  You know the type, cardboard, photos, glue, glitter (optional).

It was an “About Me” project and it took some thinking about what to put in and what to leave out.

It was an opportunity to provide some education, without being “in your face” about it.

We left out:

• pictures with tubes, medical imagery or obvious ‘premmie’ shots 
• the term Cerebral Palsy as it doesn’t really explain anything about Mac and who he is and what he can/can’t do to Kindy kids (well, to anyone really)

We put in:

• who he is, what he likes, his family portrait, where he lives and a couple of his footprints (1 month of age and 6 years)
• an explanation of how/when he got his brain injury
• reference to his ‘angel sister’ (as quite a few kids know of Meg)

Cardboard posters are difficult to store.  So I had a play with one of my new(ish) bits of software.

Here’s a ‘gallery’ version of the pictures that appeared on his poster.

It does need some audio – we haven’t yet decided whether to go with background music or have Mac’s cousin, Alex, voice the text and convert it to Mac’s pitch to retain as audio.

The software is PulpMotion Advanced.  I bought it initially to make some eBooks and I have been having lots of fun with it.  Mac’s cousin Lucy has recorded the audio for  a couple of books for him.

 

 

 

 

I plan to make some ‘sight words’ options as well as some more ‘numbers & letters’ versions.  

I’ll be sure to share when I get them organised.

By the way… I wasn’t the only parent who had to help their children in the preparation.  I possibly will be in a few years, but am sure we will get better at them in time.

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).

It’s MaccyMoo… don’t you know!

It was a different start to the morning for the students of KC.

Their teacher and teacher’s aide were off to a meeting. They had a fill in teacher and they had Mac’s Dad, Shawn, in the class to help out.

Shawn made himself available to ensure the entire teaching team of the class could attend the Learning Team meeting with me.

We had scheduled a 1.5+ hour meeting to plan for the next term of work with the vision support itinerant staff, the DET inclusion support officer et al.

Shawn and the ‘fill-in teacher’ were left holding the fort.

Our meeting went well and apparently class went well too. Shawn’s used to teaching university students so kindergarten kids probably aren’t too much of a stretch when you think about it.

Shawn was quite delighted at being ‘shhhhushed’ by one of the young girls because he was making Kookaburra sounds when they were meant to be working quietly on the letter ‘K’ – my guess is he ignored her. 

He then went on to prove you can make the sound of a kitchen… ‘bang, crash, whirr, wiz, whoosh’ – hmmm doesn’t say much for my style of cooking really…

I am not sure who was enjoying themselves the most, Mac, the rest of the table or Shawn.

But most of all, he loved being ‘put in his place’ when calling Mac – Maccaroo (Mac has lots of nicknames).  

He was roundly critised by the kids who explained to him rather emphatically that it is NOT Macaroo… it is MACCY-MOO.

Sheesh, you’d think his Dad would KNOW that.

I am pretty confident there would have been a few eye rolls by Mac’s peers at that type of adult ignorance.

the Merit Award

We wondered if it would happen? What would it be for?  Did we want him to receive something just because it was his turn?  Would he be truly deserving of such recognition?  How will it not be seen as the “sympathy award”? 

OK, we are new to this school caper… plenty of kids get awards for all sorts of funny little reasons – clearly important to that individual… who cares if they seem silly to others.  Personal growth is indeed more important than comparison to others – we absolutely understand that – nice to have the reminder though.

We had a nice chuckle to ourselves when we realised this.  We thought back to the pride we felt when we were five years old receiving an award for one thing or another but we did wonder, was our award ever as insightful as this  one for Mac, did our Teacher “nail it” as far as really ‘getting us’?

Mac received a Merit Award for his “Keen Interest in Music”.  

This is a very appropriate award for Mac (although the fact he cried when they turned off the heel-n-toe polka might have been a bit of a give away).  Even so, there are a few things that make Mac tic… music is one of them. 
It was wonderful to have that not only identified, but recognised.

the Crying Game

Mac cried,
the ‘aide’ tried,
and Mumma had to get him.

Mac cracked the ‘sads’ yesterday at school.  It was bound to happen at some stage – I have never met a child who is 100% happy 100% of the time.  Why should a child with a disability be expected to be 100% happy (or good for that matter)? 
Oh, I remember…  because (insert sarcasm here…) “they’re always such happy children” (ugh). 

I wan’t super surprised.  Mac cries with incredible gusto when he decides to ‘let rip’ .  It at times doesn’t seem humanly possible he could be producing the sound without amplification, so I knew it was bound to happen at some stage and would shock the staff.  And I know it was only out of concern for his wellbeing that we were contacted. 

But, for the uninitated here are some reasons a child with a disability might cry…
– they are sad
– they have a pain
– they are hurt
– they don’t like what they are doing or being asked to stop doing
– they don’t like who they are with
– they are tired or hungry
– they are faking it to get out of something

groundbreaking isn’t it… kinda amazing it is exactly the same for a ‘non-disabled’ child.

For the record I could have left Mac at school because he was absolutely fine when I went to check on him, I assume he had a teeny tiny burp and decided to ‘bung it on a little’.  But as I was at a conference and had already missed lunch to head out to school, I was loathe to miss the last speaker who I was really keen to hear at the end of the day… so Mac and I left early and went back to listen to the Commander of the Middle Eastern Task Force speak – she was a fantastic speaker and Mac loved the talk.  Must have something to do with his passion for ‘The Bill’, he glaarred everytime she spoke about the street gangs and undesirables.

I will not be collecting Mac from school every time he cries – I am sure other parents don’t do that.

The school will learn to deal with it and respect it for what it is.  Let’s face it, crying is only communication (as is all behaviour).  We are all allowed to protest and complain, it’s a basic human right.

More learning for the staff.  It’s all experience, all good.

what do they mean “one size fits all”?

hmmm, seems the school beanie might need some ‘modding’ too.

Oh well… never mind.

the iFuture

There have been many ideas, thoughts and plans churning around in my head for some months now as to a better option for Mac for his limited Augmented Communication options.   I make no secret of the fact I hate paying the prices on some of these devices and I am resentful of the non-profit organisations who represent us and who don’t fight for better, cheaper products.  I also dislike the Australian model of assistance where Speech Therapists believe you have to prove you can drive a formula one car before they let you sit for a learners permit when it comes to AAC devices.   Funny isn’t it.  I have yet to meet a neurotypical child who was ‘gagged’ from saying their ‘bub-bubs and gurgles’ until they could speak properly.

Having looked at quite a few devices I have found one of the better options out there for Mac would be the M3 made by Dynavox – but at around the $7K mark it is still exorbitantly priced – no matter how good it is.  Mac would still need a head switch but it would certainly help his peers communicate more easily and readily with him.

So the idea I have been kicking around is to modify a touch screen MP3 player like the iPhone or iTouch type products.  On the iTouch I could then have all the different Audio Files with Album Art stored on there for the different uses.  It would mean we could retain greetings, numbers, letters, news, farewells and so on.  It would allow (with a voice recording application) for us not to miss many of the opportunities presenting themselves at school for Mac to relisten to such as singing, music, kids reading to him etc.   The more I have looked into it more I am finding it probably is the way of the future for us.

A new AAC application for the iPhone has just been released http://www.proloquo2go.com  This is a great application to strive towards for Mac.

In the meantime I need to put some serious thoughts into how I could modify something to help add a head switch into the iTouch or iPhone application (eek!).  

But, what is making me all the more determined is the huge number of appropriate applications already available through iTunes that would be really suitable for Mac.  For example, there is a letter tracing app, where Mac’s finger can be traced around the letter shape – no holding a pencil, no wrangling him into a ridiculous position, no “kid wearing and adult suit” just to trace a letter.  The iTouch could be placed in the right position for him… left or right handed side… and he can be shown the letters with little effort.  

Other programs I like already available as iPhone or iTouch applications include memory matching, voice recording, alphabet flash cards with animation, jokes, farts (he’s a boy and he is five…), story books.

I will let you know how it transpires… particularly around the head switching or switch adaption opportunities.

btw… the cost of a “One Step Communicator with levels” in Australia is the same price as an 8gig iTouch.  It gets harder and harder to justify supporting the “disability model of access and AAC”.

Ethan the Exceptional

Mac has a birthday party to attend this weekend. 

His friend Ethan is turning six.

Thankfully I found the invite in the bottom of the bag after being alerted to it by another parent… Mac didn’t let me know of it’s existence.

I rang Ethan’s mum to RSVP rather apologetically for being so late.  She wasn’t worried, more relieved as Ethan was ‘stressing’ that Mac wouldn’t make it.

More importantly Ethan   C – H – O – S – E   his birthday party venue at the local animal park because “Mac would probably like the animals”.

What an amazing young man – so selfless at six.

This is why inclusion and integration is important.  Mac and Ethan have been at day care and then school together.  Ethan (and his brother) send artworks home as gifts for Mac that they spend weekends working on… Mac sends Thank You cards back. 

This is a real relationship, a real friendship. 

Mac loves being around Ethan – who wouldn’t?

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”

News with help from the ‘newsman’

I wonder if it helps having a journalist for a Dad when it comes to ‘producing’ News (Show & Tell) for school.

As Mum had jumped on a plane to Canada for an inclusive eductation conference it was up to the ‘boys’ to prepare ‘news’ on their own this week.

Breaking News… Nan & Pa came to visit!

CLICK THE BREAKING NEWS LINK ABOVE TO HEAR THE FINAL PRODUCT

The process was as follows:

 

1. Mac and Dad decide on a topic (Mac gets 2 or 3 choices and has to give a facial expression response to indicate his preference)
2. Dad writes the content on the computer using a handwriting font of similar standard to the rest of the class
3. Cousin Alex comes up to voice the news in Audacity
4. Dad tweaks the ‘pitch’ to reduce Alex’s 13 year old voice to a 5 year old voice
5. Mac listens to the news and a grin usually signifies approval
6. Dad saves the news onto the Step Communicator for Mac to ‘switch through’, one sentence at a time, at school’
7. Dad prints the text version with pictures to provide a text/picture option to support the story

 

The NEW aspect we have added to the news is to pose a question at the end.  
We hadn’t realised being new to the whole kindergarten thing that children, on completion of their news, ask “are there any questions?” to enable dialogue to continue.  

To allow this type of discussion to occur we now place a question to the children from Mac.

I think it works OK.