mid-year school report

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Needless to say we were pretty impressed with Mac’s 2010
mid-year report.
Great insight, very positive…
a great record of his hard work.

nagging

Mac wasn’t working very well in class the other day.  He was meant to be doing his work in Morse Code – but just kept kicking his feet, not making any sense with his letters.

R (his Aide) reverted to his Yes/No switches and asked him if he needed to tell her something… “YES” was the response.

R:         “Can you type it for me?”

MAC:  “Yes”

So they reverted back to morse code.

MAC:  ” N … A … G “

R:         “Did you want to write N-A-G ?”

MAC:   “Yes”

R:          “Do you think I am nagging you?”

MAC:  “Yes”

R said she laughed and then went on to explain she is sorry it feels like ‘nagging’ but everyone else has to do their work and therefore, so did Mac.

When Mac got home I asked him if he knew what the word ‘nag’ meant and gave him some choices of definitions.   He knows exactly what it meant.

Then…

something strange happened…

I   s t a r t e d   c h a n n e l l i n g    m y    M u m .

All of a sudden these words started spilling out of my mouth – reminiscent of when we didn’t want to eat our dinner as kids and our parents used to pull out the line…

“You should be thankful you have food on the table… there are children starving in Kampuchea“.

Here I was trotting out the line…

“You should be thankful you have someone who WILL nag you.  There are kids with disabilities all over the world who never get challenged, who never get nagged because people don’t have expectations they can do the work.”

Needless to say, Mac agreed with his foot switches that “YES” he is lucky he has people who nag him (even if it was to simply satisfy his mum’s little rant).

I also took the time to remind him, despite what he might believe, at seven years of age he isn’t actually the ‘boss of the world’ and still has to do what the teacher asks.

He conceded to “half agree” with that idea… Hmmm.

smart money

In class Mac has been learning about money, how to calculate amounts using different coin denominations.

We created a set on the Macaw to help him get to his totals, tell us if he is planning on adding more coins and also to let us know when he is finished.

It didn’t take long for Mac to well and truly had the hang of it – literally one explanation and one run through modeling it to him – then he was sorted.

In class Mac used his Macaw while the other kids used the SMARTboard.

When called on by the teacher for his suggestion on what coins he might use to make up the amount of $1 Mac gave an insightful response.

With a very sly grin for his teacher, Mrs R, Mac chose “one dollar” & “that’s all” which he followed with a giggle.

Mrs R explained to me when I collected him that afternoon that she “chastised him for being a ‘smart aleck’ ”.  She was laughing to me about the incident because, for her, it was nice to see a bit of ‘naughty coming out’.  She figured #1 he was being “smart” with his answer… it was as clear as day in his face and #2 it is quite good for him to get in trouble in front of the other kids – just as they do.  I added #3,  there is kudos in getting into trouble at school.

So all in all, Mac earned a bit of ‘respect’ for all the wrong reasons but gave his teacher a little chuckle along the way.

learning support officer ‘mumma’

On Friday I spent the day in Mac’s classroom.

The teacher’s aide was away and the school was unable to find a replacement.

Mac could have gone to another class where there was a full time aide but the proposal was he go to the Kindergarten class.

To my mind this was the least desirable option for these reasons:

• Kindergarten is a crappy place to be for a child who can’t physically do any of their tactile/hands on style work.
• It is a boring place to be having to “watch or listen” to other kids doing their tactile/hands on style of work.
• No consideration would have been given to how this “presents” Mac to the other children. Mac would not go into the class as a ‘helper’ as other older children would… he would have gone in as ‘helpless’. This is a very long way from our vision for Mac where he is presented in a positive manner and in a valued role.
• Mac has told us he doesn’t particularly like younger children helping him – and honestly, who could blame him – I am sure he isn’t the first kid to find “younger kids” somewhat annoying.
• Mac would have been extracted out of his own learning environment and likely not exposed to any real learning had he gone to the Kindergarten class that day. On Friday Mac’s class has sport in the morning so they already miss out on their optimal learning time – it would have meant Mac’s day was a total write-off.

So what could the alternative have been…

• It would have made much more sense if Mac to move him to one of the senior classes. At least the senior students have competencies and abilities to assist Mac without him feeling patronised.
• He could simply have been exposed to the same information as them and gleaned some learning from their lessons – even if he wasn’t actively doing any work.
• It would have presented Mac in a positive role of “valued learner” not “child in need of baby-sitting”.
• It would have sent a message to Mac that “you are bright, you’ll understand this”. After all ‘expectation is one of the greatest predictors of success’… (funny, our school told me that, what a shame they don’t listen to their own theories).

As it turned out I didn’t have the busiest Friday planned and decided to stay an assist in Mac’s class (I help with sport on Friday until 11 anyway) and his teacher was happy for me to stay.

It was worthwhile as it gave me some extra insight into the work they are doing in class, the language being used and what options Mac can use for taking a more active role in the class.

I still marvel at how much difficulty our school has at employing Learning Support Officers, providing continuity in the classroom and having back-up plans for when staff are away/unwell.

Term 1 worked really well for Mac with primarily one aide in the classroom who knew how to assist him, assist the teacher and assist the rest of the class.

Term 2 has seen a major shift in this approach with at least six aides having worked in the classroom at one stage or another (it is only WEEK FIVE).

While the concept of getting all the aides to understand how to communicate with, and assist, Mac might work well in theory – there is no overlap provided for training, so it is impossible to accept it is really a considered approach by the school. Basically I have to provide training every time someone new appears in the class.

Fortunately Mac’s teacher is fantastic and remains totally committed to him meeting his educational goals. Mac remains happy at school and is coping OK (just) with all the changes so for now we will just watch and see how things pan out.

It does highlight that you have to remain vigilant to what is going on at school. I will keep a close eye on Mac and keep our communication open so that he knows he can tell me when/if it all gets too hard or if I need to take action.

scar-face currency

It seems battle scars are much revered among the six, seven, eight year old set.

Mac is no exception.  The recipient of a carpet-burn to the cheekbone courtesy of a slow motion slide out of his kid size recliner – he was very excited by the attention he garnered as he proudly wore his battle-scar to school.

He didn’t suffer too much pain for the ‘temporary disfigurement gain’ – a momentary dropped bottom lip, a watery eye – but no crying.
Even so we have suggested that an ‘encore’ performance is really not necessary.

Alas, the wound healed in a matter of days and there is no sign of where it lay.

Mac has always been an incredible healer.  We used to joke when he was a preemie in the NICU that he may not even end up with a bellybutton scar he was so remarkable at healing his wounds (we needn’t have worried, he ended up with a very neat little bellybutton).

angry!

I happened to be in class during their journal writing/creative writing session the other day.

Most students were writing about their recent cross country carnival.

Mac had indicated ‘YES’ he did want to write about Cross Country.

He was asked to spell out the key word for his story as a starting point.

He used the Zygo Macaw with the full alphabet and started…   A – N – K  some frustrated kicking… U – Y  more frustrated kicks…

“Do you want to try again?” he was asked

“YES”

“Are you happy with A – N?”

“YES”

He continued choosing letters… G – R – Y

A – N – G – R – Y  was the end result.

We asked Mac if that was what he wanted to spell.  ‘YES’ was the response.

“Were you angry?” I asked  “NO”

“Was Mrs R angry?” I asked  “NO” (to which Mrs R joked it was probably a miracle)

And then it dawned on me… Some children had got into trouble at X-Country for throwing stones and breaking a light.

We knew this had happened because my Uncle owns the X-Country course and he and Mac’s Pa had been discussing the ‘issue’.  It turned out some of the younger students from some of  Mac’s classes were responsible for the damage.

And so we continued our discussion…

G: Were some of the kids angry?
M: Yes
G: Did they break something?
M: yes
G: Did they get into trouble?
M: yes
G: Do you know who it was?
M: yes
G: Are they naughty boys?
M: no
G: Were they being silly?
M: yes
G: Did they have a bit of a brain snap?
M: yes

The thing was this didn’t strike me as the type of story Mac would tell – I still wasn’t sure I was getting at the crux of what he wanted to talk about.

His aide ‘R’ cottoned on quicker than I did.

R: Are you worried about the boys?
M: yes

a-ha, now I have an inkling of what is going on.

G: Have you heard about them getting into trouble?
M: yes
G: And are you worried about what that means?
M: yes

And so the conversation continued.  Mac and I discussed what getting into trouble was all about and what kind of consequences these type of actions could incur.  I explained how there were no ‘beatings or batterings, no one would be locked in a room, a cupboard, a box or any other place.  They wouldn’t be sent away from the school, they might have to show (or at least act like they were feeling) remorse.  We discussed what this might look and feel like.

I actually went through it as in-depth as I could realising that Mac really had no understanding of what ‘getting into trouble’ truly looked like.  Mac is a child who at this stage of his life is unable to get himself into a position where he would need to be disciplined.  He doesn’t yet have independent communication and, while I don’t plan on limiting his vocabulary at all, it still will remain quite difficult for him to get into strife.

Sure, I can see a time in the future when he may use a switch adapted sling shot with butane gas & fireball attachment inappropriately, but for now, he is a pretty trouble free child.

It still fascinates me what Mac does and doesn’t understand and I love the interesting journey these conversations take us on.

Fear of the unknown, as with all of us, remains significant.

However, I am pleased to say that once we had our big discussion about all things “Cross Country and beyond” Mac decided he wasn’t worried about the boys anymore – he thought they would be ‘OK’.

weekend at bernie’s

A new family arrived at school two days ago.

One child in Mac’s year and one in Kindergarten.

They had sport on their second day.  I generally go in and assist the Stage 1 classes with their sport and I was busy helping position Mac’s ‘catching scoop’ when our new classmate ‘E’ came up to me.

E: Are you his mum?

ME: Yes, I am.

E: Um, he looks dead…

ME: (stifling a laugh) Yep, you are right – he really isn’t getting into it is he.

At this point one of Mac’s classmates, turned around to explain to ‘E’ (with an exasperated fling of their arms)…

“duh, he has a brain injury”.

I mean really – it is soooo completely obvious LOL.

I am glad I have a warped sense of humour.  That comment has amused me no end and Mac thought it was very funny too.  All I can think of is how very “Weekend at Bernie’s” it seems.

On a side note I was fascinated to see the younger family member, “E-junior”, come up and talk to Mac in the afternoon of their second day.  It really is amazing how observant children are.  He walked up to him, placed a hand under each of Mac’s feet and said “hello” while tapping Mac’s feet.  Now, he would really have no reason to know why he was doing that, but obviously had seen the other children doing it – very cute.

That being said… I do apologise to any wheelchair users out there on the off chance you should run into Mac’s schoolmates – I do hope they don’t start hitting your feet when they talk to you.

losing the groove

Holidays are important for recharging the batteries – but boy they play havoc with routine.

Just has I have been out of the loop with blogging so too Mac has been out of sorts with the holidays and return to school.

It hasn’t helped that the first two weeks of Term 2 have been short weeks with lots of different activities eg AFL day, cross country, school sport and gymnastics etc.

Mac also spent one morning presenting a talk (with Mum’s assistance) on AAC devices to the local TAFE college students undertaking their Disability Studies Certificate IV studies.

Finally, we are in Week 3 of Term 2 and we finally feel like we might be back on track.

Phew!

same same but different…

To borrow a ‘tinglish‘ phrase…

Mac and Shawn were out and about on the weekend just having a “Dad’n Lad day”.  So often is is either just Mac and I or all three of us so it is nice for them to just hang out on their own.

Shawn experienced one of those moments many parents of children with a disability often dread.  You know the one, when another child stops dead in their tracks, stares and points.

He said his initial feeling was a slightly uneasy ‘hmmm, OK then, how’s this going to go down?”

The little boy, now standing straddled over his own push bike, waited for his Dad to catch up to him, turned to him, pointing first to himself, then to Mac and declared…

“Look, same… Ben 10 bike… Ben 10 wheelchair”

That’s it.

Same same!

morse “the movie”

I finally got around to putting some video onto the computer of Mac learning his morse code.

It shows him on one of his worst days physically – he has that whole ‘pretzel’ thing going on.  Despite the poor quality you can see he pretty much does small ‘toe drops’ to activate the switch.  He rests his feet on the velcro loops attached to the switches and a very small amount of pressure activates them.

This was only taken about two weeks into us starting to teach him morse – I must take some more footage to see the progression.   You can see for the ‘h’ I pretty much left the dash switch out of reach as he had only learnt that letter the day before – it wasn’t an exam LOL.

The computer is plugged into my Dad’s 46″ LCD TV and I think, from memory, that day I had a third switch plugged in for me to use with my foot to tab across the Morse Code program once he completed each letter.

There’s about five minutes of footage – thankfully Mac has got a bit quicker as time has progressed.  He still has some pretty dreadful days physically, those days we don’t push things.  When he is having a great day physically he makes up for it.

the refusal

Mac had a shocker on Friday.  The thing is, it was all his doing.

Mrs R was out of the classroom for the entire day and Mac’s response was to “NOT WORK”.

He wouldn’t spell ‘hat’, ‘at’, ‘go but was happy to spell ‘Easter’ and ‘supper’ (not his spelling words).  He refused to do any of the ‘add two to the total’ sums in Maths.

He was hopeless and, yes, a little bit naughty.

His Aide asked him whether he thought he should be doing good work for the substitute teacher Ms M…. “NO” was Mac’s reply.

“Do you think you should only have to work for Mrs R?” she queried further….. “YES” was Mac’s reply.

OK, I love that he loves Mrs R, but I have suggested to him he probably needs to ‘get over himself’ just a little bit.

I am not sure he is totally convinced.

He is impossible to manipulate – one of those traits you love and hate simultaneously.

mad as hell!

I have taken the pledge… have you?

CLICK IMAGE TO OPEN ‘Mad as Hell’  INFORMATION PDF

This works for us because the “mad as hell” campaign is not prescriptive.

Good disability policy is not a ‘one size fits all’ solution.  Control and choice needs to be in the hands of the people with disabilities and/or their families.  So much money is wasted under the current charity based model of disability support.

I know I want quite different things for Mac than the Government/bureacrats/Carers Association/Spastic Centre/ADHaC/DET…” think I want.

Chances are I probably want different things to other families of kids with disabilities.

This is the way it should be – we are individuals.

For example at this stage of Mac’s life I don’t want (or need) respite, I don’t want physiotherapy, I don’t want support for nappies only to be told ‘you can’t buy the ones you want (or need)’ and I don’t want to sit on waiting lists for years for technology or equipment Mac actually needs.

I wouldn’t mind some financial assistance to attend the odd conference to help Mac out and for me to learn more (instead of respite).  I do want to choose which therapists we want to use, I wouldn’t mind being able to use some respite money for getting some help with Mac while I do his physical therapy (or have someone help me do his physical therapy).  I want to be able to make sound choices for (and with) Mac and allow him to not be seen as a ‘charity case’ but allow him to thrive and reach his potential – none of which is easy under the current ‘broken’ system.

The Mad as Hell campaign was covered in The Australian today:

when I grow up…

I finally got round to asking Mac if he knows what he wants to be when he grows up.   I’ve always told him jokingly that he will need to get himself a good job since all the ‘disability’ things he needs are so expensive.

It was a fun conversation, it went like this…

GINA: So, Macco, do you know what you want to be when you grow up?

MAC: yes

GINA: Do you think you could tell me somehow?

MAC: yes

GINA: Could you spell what you want to be using the Macaw?

MAC: yes

MAC: (using Macaw) d – a – d

GINA: Do  you want to be LIKE Dad?

MAC: yes

GINA: So, do you want to be a teacher/ lecturer like Dad?

MAC: yes

GINA: Do you want to be a teacher at school?

MAC: no

GINA: Do you want to be a teacher at University?

MAC: yes

GINA: Do you want to teach the same thing as Dad?

MAC: I don’t know

GINA: Do you want to teach Journalism like Dad?

MAC: yes

GINA: Or, do you want to teach Maths?

MAC: yes

GINA: Is there anything else you might like to teach?

MAC: no

GINA: So, you want to be either a Maths Lecturer or a Journalism Lecturer at University?

MAC: yes

They sound like pretty good choices to me.

We also talked about the other obvious option from the above conversation about Mac maybe wanting to ‘BE A Dad’.  He agreed he would like to be a Dad one day.  He has been very inspired by Tania at TandemMaster who is a Mum who happens to have quite significant CP, and who uses Morse Code for her communication and access.  I used some of Tania’s stories with Mac when I started talking to him about morse code – seems there was more for him to learn than I imagined.  Tania has been a great help to us offering advice as we move forward with the morse code option for Mac.

Here’s a news story just after Tania gave birth to her son Michael

And here’s the TandemMaster in action.  We have applied for a Tandem Master for Mac to use at school.  Hopefully it will get approved, in the grand scheme of disability equipment it is on the ‘cheap side’ at less than USD$500.

As many people have proven to me, not the least of them being Mac, anything’s possible.

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…”