Tag Archives: special needs

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!

 

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Filed under Access all Areas, friends, Inclusion... straight up!, the big picture, things that make me go "glll"

fridge magnet friday

This is perhaps my favourite quote to do with inclusion – so simple, it just goes to the heart of the matter.

CLICK THE IMAGE TO VISIT http://www.PAULAKLUTH.com

 

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who owns those kids over there?

Just want to tell you… they’re awesome!

I could see the corner of a piece of paper poking through the zipper on Mac’s school bag.   There’s not normally stuff in that front pocket… I reached in to see what it was.

Awww…
Now, clearly… this is not Mac’s own handiwork.  I believe there has been some wonderful collaboration on this project.

What I love is the insight or inclination whoever it was had to help Mac send a “love note” home for his Mum.

Mac wouldn’t yet have the communication on his device available to him to say to someone, “hey, can you help me make this” without them needing a lot of patience to ‘hear him out’.

I just love that someone thought I’d get a kick out of that coming home – they were so right.  I get the ‘warm fuzzies’ every time I look at it.

Thank you to the parents of the ‘mystery children’ that helped Mac make this.  You are growing fine, thoughtful little citizens – keep up the great work.

What a wonderful gift.

 

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fridge magnet friday

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chocoholic

It was an interaction full of sincerity.  Mac’s newest aide “M” was on her first full day working with him.  She had been learning about his equipment, how he uses his foot switches and trying to find out more about him, from him.

M was explaining to Mac how he might have to “bear with her while she learns all about the equipment and promised she would work hard to master it quickly”.

“M” then asked him  “what she might be able to do that would help him the most?”

Mac started his auditory scan.

C – H – O – C … then up to word prediction:

C H O C O L  A T E

Yep, all “M’s” sincerity wasted – this kid is in it for himself, cheeky little bee-bop.

Although, I have to admit to been secretly impressed by his answer – to me it says so many things…

I am can spell…
I am a smart alec…
I have a sense of humour…
I am cheeky…
and, well,
I actually do like chocolate.

 

 

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the curious case of the missing ‘R’

Mac’s wonderful aide of 15 months ‘R’ wasn’t able to return to the role this year.  Sadly reduced hours & lack of job security for her just couldn’t meet her needs to support her own family.  That’s the downside for ‘Learning Support Officers’ – jobs they love, jobs they are great at, but jobs that just aren’t that secure.

Mac will miss ‘R’ incredibly  as she will him.  But, he has told us he will “work hard for anyone”.  When Shawn asked him if ‘R’ was in his class after Day 2 he actually gave a sad face – not something that happens very often.  Physically that kind of facial expression is difficult for Mac, so it was impressive to see him manage it when he actually felt the emotion Shawn’s question evoked.  That being said, Mac is nothing if not resilient – so I think he will be OK.

The upside is that R will likely stay involved in Mac’s life ‘outside of school’.  She has made that very important transition from paid support to friend.  This is an important shift  – natural supports are far more valuable than any paid support… ever.

A goal is for Mac is to see his life filled with people who “CARE to CARE” as opposed to those “PAID to CARE”.

Thank you ‘R’ for sharing the most amazing year and a bit with us – what a blast….  and absolutely, we’ll see you ’round.

 

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she said… he said!

Rosemary Crossley

Mac has just spent a week of his school holidays with Rosemary Crossley at DEAL communications in Melbourne.

It has probably been one of the more incredible weeks of our life.

We spoke with Rosie some months back to determine who, if anyone, she recommended for us to see. We knew Mac had a yes ‘facial expression’ but we needed help with the next step of getting consistent yes/no options for him. We were starting to get overwhelmed with the next step in technology to better allow him to access more learning and increase his chances/options for communication.

The upshot, she recommended herself, so we trotted off to Melbourne knowing this was the best option for Mac and us. Within two hours Rosie had provided Mac a YES/NO option using two jellybean switches with his feet being the ‘conduit’ for his decisions. His cheeks will work equally as well, but as I was more unfamiliar with him using his feet we concentrated on them this week.

The rest of the week focussed on helping Mac develop a process for auditory step scanning.

Rosie’s piece of technology of choice for Mac is the Macaw 3. It is an older piece of equipment but it’s capabilities are perfectly suited to Mac’s needs… and the best bit, it bounces, it is a sturdy bit of kit.

Mac uses his left foot and a jelly bean switch for auditory scanning where he controls moving through the choices and removes his foot when he reaches the desired answer. The machine then repeats his answer more loudly to show that is what he is wanting to say (as opposed to the quieter scanning volume while he is making his choice).

Some of Mac’s appointments with Rosie went for 4+ hours. He was incredibly tolerant and determined. I know he is a great natured little kid, but it was nice to hear Rosie comment on how much she enjoyed working with him because he just ‘kept on going’. He did ‘nod off’ mid switch at one stage, but it was a fleeting micro-sleep, then we pushed on.

So where to from here…

Our directive from Rosie is that Mac needs to be accessing the same curriculum as the other kids but designed for a ‘blind child who won’t/can’t use braille’. She believes his level of cognition is easily on par with his peers and therefore we need to keep pushing him along the mainstream curriculum that is merely made accessible, not ‘dumbed down’.

This is the first time anyone has suggested to us that Mac may not have a developmental disability.

It is generally assumed based on his physical condition, lack of vision that there is most likely cognitive delays… but it seems, this is not so!

Some of the questions Mac was answering were pretty interesting.

  • We now know for sure he is a Sydney Swans (AFL) supporter.
  • He thinks I am meaner than Rosie. 
  • He’s pretty good with his numbers.
  • He knows the wolf didn’t actually eat the three little pigs.
  • He knows which letter he needs to turn ‘mat’ into ‘mate’ and ‘hat’ into ‘hate’… although he did suggest we ask him something else when asked to spell ‘dog’ (funny kid).

He did remarkably well on comparative relationships including:

  • are watermelons bigger than apples?
  • are lemons sweeter than chocolate?
  • is night darker than day?
  • are parents older than their children?

And even better on the passive relationship with questions including:

  • John was hit by Eric, was Eric hit?
  • Mary was driven by Alice, was Alice driven?
  • Paul was chosen by Steve, was Paul chosen?

These are great insights for school. We will now be able to have a more focussed approach with a much clearer IEP. We now have the opportunity for Mac to be challenged and, subsequently, the ability to collate results and progress more readily.

On reflection I do believe all early intervention and early childhood services need to set goals far higher than they do.  I guess I always suspected they needed to (as did Mac, explains why he disliked it so much) now I KNOW they do.

They all need to set a goal for consistent YES/NO by any method as a basic requirement for every student.   Communication is power, communication is opportunity.  

Any centre, therapist (or even school) who sets a goal below this should be challenged – we all need to play a role in demanding higher expectations for all children… after all the the least dangerous presumption is that of competence, we all know that… now we need to ‘DO THAT’.

Mac’s world has just grown from one with reasonable (primarily because we don’t think small) but limited opportunity to unimaginable, endless opportunity.

This is a wonderful place to be.

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