fishing for info @ AGOSCI 2011

Just back from the AGOSCI conference in Adelaide where I was both an attendee and presenter.

I will post soon about what I learnt, gleaned, extracted from those in attendance.

It is a very interesting coming together of people with complex communication needs, family members, Speech Language Pathologists, a few OTs and some educators.

As always with these bigger/longer conferences I tend to get so overloaded with information it takes time to sift through it.

A positive is I don’t feel we are behind where we should be with Mac and his communication – in some ways I am feeling quite confident we are on the right track – despite being surrounded by ‘professionals’ – our home-made approach with Rosemary Crossley’s initial guidance holds its own.

thankful

CLICK IMAGE TO WATCH VIDEO

I showed this video to Mac today and asked him for one ‘describing word’ to tell me how it made him feel…

was his response – not quite understanding I pressed for more information…

“thankful to know you will help me”

awwww shucks, with slight watery sensation in my eyes can I just say “my kid is awesome”.

In this moment I can honestly say if he never types, taps or says “I love you” I don’t think I could care less.

To know he wants & needs my help – and is confident I will be there for him – means more than any old ‘love you Mum’ he might offer up at some stage in the next 50+ years.

That’s not to say I plan to be a “needy Mum” where I end up in that ‘icky’ place where I am needing him to need me.

I have full intentions of ensuring there are plenty of people around to ‘help him’ – particularly if he plans on doing a PhD via Morse Code à la Dr. Kristin Rytter… thanks Kristin for your inspiration (I think ;-))

 

the big award, the bigger surprise

Presentation Night was here.

Leading up to the end of term I had considered Mac might, in light of his performances this year, garner an award.

However, as the night drew nearer there were no questions raised as to how Mac might make it up on stage, where he would sit etc – so I pretty much ruled it out.

Over dinner, before presentation night, we discussed with Mac the likelihood he wouldn’t be getting an award.  We explained how so few awards are actually given out it means the majority of students don’t get them and how, some people never, ever receive an award despite working hard their whole life.

On arrival at our local ‘Entertainment Centre’ (our venue for the evening) we were greeted by Mac’s teacher, Mrs R, who pointed me in the direction of the rest of the class.

Unaware of what was happening behind me Mac and I trundled off to get him seated.

Meanwhile, Mrs R had pulled Shawn aside and said

“right, Mac is getting an award – can you check the best access route onto the stage for me… oh, and don’t tell Gina as it is a surprise”.

Needless to say I was enormously proud of our little boy for receiving his first ever ‘big’ award for “Maths and Communication” – proud that he truly earned this award and proud, once again, that his teacher took the extra effort to explain to the entire audience how Mac does his work to ensure this was not seen as a ‘sympathy’ award.

 

but…

I was also absolutely thrilled to have had the opportunity to get the same “surprise” other parents get to enjoy.

I have (occasionally) reflected privately on the fact that as Mac’s mum I don’t really get to experience surprises with the ‘little things’ like other parents do.  There always seems to be planning and involvement in most areas in order to simply make things appear to happen spontaneously.

To have Mac’s teacher go to the effort of ensuring this was a surprise was almost overwhelming – I felt, and still feel, so very privileged at the amazing gift she gave me.

I know as parents of children with disabilities we often talk about the concept of “getting it”.

Mrs R absolutely “gets it”.

We have had a great 12 months – it certainly feels like this was “our year”.

can Stephen Hawking spell ‘catalogue’?

School assembly had finished, I was waiting for the bell to ring – but had that funny feeling I was being watched.

I saw her out of the corner of my eye – she seemed to be waiting.  “Does she want me” I wondered.  I didn’t recognise her but made eye contact all the same… just in case.

She quietly approached, her face looking very serious and spoke to me, almost whispering…  “Hello, I’m Caitlyn M.  My sister Maddy went to pre-school with Mac – I saw Mac graduate pre-school”.

It worked out the relationship and who this young girl was.  “Oh yes, I knew Maddy” I told her, “she’s a year younger, right?” Cailtyn nodded.

“Well, I think that Mac might grow up to be a scientist.” she added (still very sincere)

“Because, well, there’s a very smart man who is in a wheelchair and uses a computer and he is a very, very good scientist.  I think Mac might be going to be like him because ‘catalogue’ is a very, very, very hard word to spell.

“You might be right” I concurred “who knows what the future holds”.

Look out Stephen… Caitlin thinks you might have a rival in the making – better hone your spelling bee skills.

 

another award

Today’s school assembly saw Mac the recipient of his latest Merit Award.

The assembly was in our new hall and his teacher was handing out the awards for the junior school.  It was a great day for Mac.

Mac’s mate Jack wheeled him up the new ramp onto the stage to receive his award for “Excellent Computer and Maths work”.

His teacher actually took some time to explain to the whole school how Mac is in her class and how well he has been doing with his maths.

She added “Mac has also been doing some excellent work with his spelling” and went on explaining how Mac uses his feet to type in morse code on his computer.  She also told the entire audience about this week’s big spelling test and gave an example of one of the later words in the test he has spelled correctly… C-A-T-A-L-O-G-U-E (and how impressed she was).

Mac is most of the way through the South Australian Spelling Test which has been broken down over a number of days due to fatigue on his part.  I think in that test you keep going until you get 10 in a row incorrect…  amazingly he is still going and is up to word 50+.  He has missed a few words like efficient (Mac went with a “shent” ending) and furniture (a simple “tr” ending thwarted him on that one) but seemed to know about the g-u-e ending on catalogue… go figure).

It was wonderful for Mac to get that kind of public acknowledgment of his hard work.  It was completely natural, wasn’t contrived – it was wonderful to watch.

Well done Macco – not bad spelling for a seven year old.

 

my pet’s adventure

Mac’s class had a ‘writing assessment task’ on Friday.

The four key components of the task…
Orientation,
Complication,
Series of Events and
Conclusion.

Mac used Morse Code and Yes/No switches with R (his Aide).

He didn’t have enough time to complete the task but he may finish it off in the future.

I hope so, I am dying to find out how it ends…

MY PET’S ADVENTURE by Mac Burns

My dog’s name is Tirina.  She is a medium sized dog.  Tirina is black, brown and white and she is desexed.  Tirina is a good dog and likes playing.

Tirina got stolen by robbers.

Mac let R know the dog was ‘imaginary’ and he doesn’t actually own a dog.

It is nice to see him “making things up” as he has trouble with that creative writing aspect.  We have been talking to him about how it is OK to write silly stories, crazy plots etc.  Maybe, just maybe, he has been listening.

So I guess he managed to cover off Orientation and Complication portions of the task…

Stay tuned for the next installment of “My Pet’s Adventure”.

how does he do it…

A long time follower of this blog, Adelaide, recently asked how Mac currently checks/proofreads/edits during dictation in class?

Currently he still uses the MORSEspell Excel spreadsheet program I made for him.

This relies on him completing the first letter, then his Aide hitts the [TAB] key to allow him to move on to the next letter.

Mac tends to have a fairly obvious facial expression as well as a slight dropping back of his head to indicate he is finished a letter so his Communication Partner knows to hit the [TAB] and move on.  He also has a fast kick he tends to do when he wants to start over on a letter.

It is far from ideal – it relies heavily on him having a Comm. Partner who is familiar with working with him and able to read his non-verbal cues.  He finds it pretty frustrating working with people who aren’t as ‘tuned in’.

The TANDEMmaster will start to remove some of the ‘guesswork’.

We will need to work out which text to speech software to use with basic word processing packages so he can listen back to what he types and from there he should be able to start learning some of the editing/proofreading (proof-listening?) skills he will need.

We have talked about whether a third switch to act as a “space” to show the end of the letter is viable – Mac has said a number of times that “NO” he doesn’t think he can do that.

The TANDEMmaster will literally act as a keyboard so Mac can eventually learn all the different punctuation options.

We intentially didn’t teach Mac his Morse Code numbers as I believe on the TANDEMmaster you can choose to be on NumLock and then have much shorter character sets for the numbers.  Normally in Morse Code each number is five (5) characters long so the NumLock option will make it much faster.

We have a review meeting with his teacher next week.  One of the things I need to make sure we do is allow Mac the option of changing  his answers.  We don’t do it very often as he does pretty well, for example he did some Maths the other day and got 19/20 as his score.  As time goes on he probably needs to be given the time and chance for reviewing his work.

Tandem Master is on its way…

NSW DET have funded the Tandem Master USB keyboard for Mac. It is ordered and soon will be in the classroom. Happy days Macco, happy days.

which in Morse code is:

-. … .– /  -.. . – /  …. .- …- . /  ..-. ..- -. -.. . -.. /  – …. . /  – .- -. -.. . — /  — .- … – . .-. /  ..- … -… /  -.- . -.– -… — .- .-. -.. /  ..-. — .-. /  — .- -.-. .-.-.- /  .. – /  .. … /  — .-. -.. . .-. . -.. /  .- -. -.. /  … — — -. /  .– .. .-.. .-.. /  -… . /  .. -. /  – …. . /  -.-. .-.. .- … … .-. — — — .-.-.- /  …. .- .–. .–. -.– /  -.. .- -.– … /  — .- -.-. -.-. — –..– /  …. .- .–. .–. -.– /  -.. .- -.– … .-.-.-

Comparing the above paragraphs makes me realise just how well Mac does with his morse code.  The first paragraph,  if we typed it, is only 138 characters (including spaces).  To type it in morse code Mac would have to enter 504 characters.

To date Mac hasn’t learnt punctuation or spaces – but with the TandemMaster soon to be in his life then I imagine these will be a priority as he moves on in his learning.

During class dictation over the last couple of weeks Mac has only been finishing some 30 seconds after the other children.

Not bad going all things considered.

mid-year school report

CLICK IMAGE TO OPEN

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.

“budder” wouldn’t melt

We’ve been talking about rude words, swear words, inappropriate language (some of the kids have been getting into strife at school).

I asked Mac if he knew any – a very sly grin accompanied a fairly confident “YES” on his right foot’s button.

Would you tell Mum one you know?   YES he answered (more grinning)

Could you spell it?  (I asked with a hint of trepidation – I think he probably knows more than he should)

So we busied ourselves with the Morse Code option.

B sure, I can think of a couple starting with “B”

U yep, still with you

D hmmm, I checked, was this correct?…  It was, Mac confirmed.

D OK, I am starting to feel a bit lost (or uncool and out of the loop)

E Nup, still lost

R OK, I guess that makes sense, could it be derived from the more familiar bugger?

So, I checked.  Is b-u-d-d-e-r  what he wanted to spell.  YES

And do you hear people saying that word as a ‘swear’?   YES

So, like  “BUDDER OFF”, “OH BUDDER” & “BUDDER IT”   I enquired further…  YES

I haven’t actually corrected his spelling just yet.  If he happens to go to the effort of telling someone to ‘budder off’ I think they will get the message and he won’t seem ‘quite as rude’.

So despite the chequered past and original meaning of the ‘intended word’ thankfully, these days, it is a far more acceptable and less offensive expletive.

I think we’ll let him retain ‘budder’ (and it’s corrected version) in his vernacular.

That being said, I am not naive enough to think that much of this conversation was cleverly manipulated by Mac who is wily enough to know what to say, when to say it and how far to take it.

As I said at the beginning “budder” wouldn’t melt… yeah sure it wouldn’t.

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.

morse merit

This is unlikely to be one of the ‘common’ awards given out in this day and age.

But, it is an important award for a number of reasons.  Not only does this show Mac is able to garner an award for something that is essentially an academic award – a great achievement for him.  It also (and more importantly) shows his teacher has absolutely given credibility and authenticity to Mac’s adapted methods to access his curriculum via Morse Code (among other things).

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.

binary boy

He is a ‘base 2’ boy.

He has a number of “viable two switch locations” ie two feet, two hands, two elbows, two cheeks.  So far, his feet are proving to be the most successful and also the most discreet.

It is official… Mac is a binary boy all the way.

We are currently using Mac’s feet to access choices and information.

So this year our focus will be on improving Mac’s ability with Auditory Scanning.

We are trialling his Macaw with two switches. One for step scanning through the choices (left foot) and then he has an option of either waiting for the time lag for the selection to be made or he can use his ‘yes’ foot to select that answer. We will see which one he prefers over the coming weeks.

Our second priority is to teach Mac his alphabet via Morse code using two switches. I have designed an Excel form to allow him to do this in the classroom with auditory feedback and training informtion. I will provide a copy in my next post.

Finally, our fall back will be to use the Yes/No switching option as a convenient, quick way to get answers.

These three options to my mind are complementary to one another and should provide him great opportunities to alongside the other students with congruency to what they are doing.

Numeracy is still my stumbling block.  I will see what ideas Vision Australia come back with when we see them next month.  I have been reading up on ‘finger binary‘ which allows you to count to 31 using the fingers on one hand.  This might be a concept we could explore using tactile feedback on fingertips perhaps, it is just a thought – I haven’t heard of anyone doing it so…  I will let you know.

I think this year should be an interesting and exciting year for Mac – his world opened up significantly since our visit to Rosie last year – this year is where we can start putting all these ideas into practice.