swimming carnival

This year was Mac’s first swimming carnival now he is in Second Class (Year 2).  I was greeted at assembly on the first day back by our newly appointed Sports Teacher asking can she catch up with me to work out how Mac could be included in the carnival.

Between us, our ‘cyber friends’ and ‘fleshy friends’ we all had some good ideas and plans for future carnivals but this year we decided that since there are still plenty of kids who don’t swim Mac could just go in to the pool for the free swim.  The Sports Teacher offered to take him in but I figured his Dad could swing a day off work for that job.  Mac enjoyed being in the water for his three swims and thankfully our heat wave had passed so it was a much more pleasant day with not too many sunburnt bodies.

As a competitive swimmer in my younger days and a swimming teacher since I was about 13yo I know I have high expectations of how well children should be able to swim.

It makes me laugh (and… yes, does my head in a little) that I can’t even get Mac to hold his breath under water.  I spend an awful lot of time explaining to him that his evolutionary loss of gills make his desire to continue breathing underwater a poor choice.

However, I do have to admit to being a little surprised at how many children are not very strong swimmers.  There is still the group who are great swimmers, strong, fast and impressive.  Then their is the next group who seemed to have ‘nice looking strokes’ but I would consider a large proportion wouldn’t have the stamina to ‘save themselves’ if they got into trouble.

Remarkably, there is also another group… those who think they can swim, who have parents who must also think they can swim (signing the permission slip indicating such) only to find when they dive in, actually… they can’t.   Thankfully the schools are ready for these few ‘sinkings’ so there is always someone on hand for each lane.

All in all it was a fun (and funny) day.

But how much fun would be to include some powered rides like this…  I am working on using this as motivation for Mac to learn how to hold his breath, when needed, in the water.

Would you, could you, lend a hand?

I am not one to ask for help very often – learning how has been on my to-do list for sometime.

But, this is one thing I don’t want to ‘hog’ – this is something I am sure some of you might want to share in, help be part of the solution, part of the excitement, part of the fun.

Long time readers know of my plans, desires, dreams for a SMART wheelchair (robotic) that is affordable, light weight and, well, smart.

You can read about it here in my “I have a dream…” post.

They will also remember that the brilliant mind of Daniele Benedettelli is on the job, over in Italy.

Danny is starting to ‘ramp’ things up a little and so has put the call out for some donations to kick start the project.

The initial equipment purchase is USD$400 and Paypal donation option is available on the project site.

CLICK LOGO TO VISIT THE PROJECT SITE

If anyone can spare a penny, a pound, a dime or a dollar it would be fantastic to get this project “rolling” (I could have said “off the ground” but  since no one is offering me a ‘hovercraft wheelchair’… rolling it is).

If anyone has any contacts or ideas for getting some ‘bigger’ sponsorship behind this project then please, feel free to contact Danny via his site or myself directly.

 

 

 

 

While we know Mac would benefit from this type of chair it is pretty obvious he isn’t the only one.  In fact, a good friend who is a wonderful teacher in our local area said she would love something like this. She doesn’t have a physical disability but she is blind, and there are times she would like to be able to get from A to B on her own, while having a conversation (or daydream) and not having to put all her attention into concentrating on safe passage with her cane.

Thanks for listening

best ever headphones

For an auditory scanner, comfy headphones/earbuds are a necessity.  So, after a year or so of searching I have finally  found some headphones for Mac that we LOVE.

Headphones or earbuds have always been a bit of a problem for Mac.  Earbuds tended to fall out, headphones never fit properly, the hook on variety hurt his ears and the headband variety often ended up covering his eyes and ears at the same time.

Airdrives earphones sit outside the ear.  They are discreet, they allow you to hear everything else going on around you and they don’t pose a risk to your ear if the sound is turned up too high – something Mac can’t do anything about if the volume is accidently turned up.

CLICK THE LOGO TO SEE HOW THEY WORK…

Here’s what ours look like…
CLICK IMAGE BELOW TO VISIT AIRDRIVES.COM

Now for the slightly disappointing news.

I haven’t been able to find them in Australia.  I purchased ours from Amazon in the USA and had  a friend to send them to me for Mac in time for Christmas.   A bit of fiddling around but SOOO worth it.

We have added an extension lead to Mac’s airdrives so he can be a fair way away from his device.  It is just a Smiggle headphone hub we had ‘kicking around’ the house – but works a treat.  The Smiggle hub has two audio outlets so he could have his communication partner listening in to his auditory cues with their own headphones to check they are all working if needed.

CLICK IMAGE TO VISIT SMIGGLE

Now, I just need to have some sort of transmitter to make them wireless to his communication devices…  I know, I know… I am never satisfied.

an ‘app’ a day 2

Another AAC app made its way into the iTunes store late December last year for iPods and iPads.

The TouchChat suite looks like it has lots to offer with the ‘hook’ most likely to be the opportunity to add Word Power.  WordPower for TouchChat is a special version of this popular word-based vocabulary, designed specifically for the small iPod screen.  It is a word-based page set developed by Nancy L. Inman, M.A.T., CCC-SLP that is used to create sentences “on the fly.”

At this stage TouchChat isn’t switch accessible.

I look forward to seeing some reviews from users on this one as I know WordPower has a good reputation out there when used on other ‘high end’ devices.

an ‘app’ a day

Arriving in my inbox this evening was news of Predictable a switch access alternative & augmentative communication aid available in the iTunes app store for iPad and iPhone users.

The email claims Predictable offers:

• Voice output – including 2 Australian voices
• Switch access
• Sophisticated predictive text engine
• Choice of keyboard
• Phrase bank
• Back ups
• Email and facebook links

I haven’t looked into it in any depth but on the surface it appears a very interesting ‘app with potential’.  I particularly like the idea that some editing can be done in Excel restored to the device.

I have requested information about their ‘bluetooth switch interface’ and will share as soon as they get back to me.

Switch Access for the iDevices are starting to make them even more attractive than they were initially but at AUD$199 I will have to save my pennies for a little longer before I am able to test drive it.

UPDATE ON SWITCH ACCESS

Predictable uses the RJ Cooper Switch Interface.

Click the Info button to check it out.

the fiance

So they are not officially engaged to be married – but there was a declaration some years ago by Miss B of her intention to marry Mac.  Friends since pre-school they still have a bond that remains as strong as ever.

Miss B’s Christmas gift to Mac was this book – we love it.

BEST FRIENDS

AUTHOR:  Tango Books
ILLUSTRATOR:   Mark Chambers

Description

A boy in a wheelchair and his best friend pretend they’re pirates on a ship, mountain climbers, astronauts, explorers and Olympic sprinters.  But even when they’re not playing make-believe, they have a great time together doing everyday things – swimming and basketball – because they’re best friends.

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.

 

a great article…

We have always maintained Mac’s greatest disability is the red tape and bureaucratic interference imposed on him as he strives for an “ordinary life”.

Guess we are not alone… this article from the Melbourne Age today, 11 October 2010.

http://www.theage.com.au/national/education/little-sofias-journey-of-the-heart-20101008-16bud.html

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”.

Shumann the Shoeman

This year saw Shumann the Shoeman by John and Stella Danalis as our book in focus for Book Week 2010.

Today was a fun day with both the ‘live show’ of Shumann and celebrations in the form of “Crazy Shoe Day” (a kind of mufti for your feet day).  A ‘grand’ shoe parade started the day off and was lots of fun.

Mac and I were torn as to what he should do… crazy shoes potentially interfere with his communication (being a foot switcher) and short of buying something – he really didn’t own anything super ‘crazy’ that happened to be the right size.

So we decided to go with “Crazy Shoe Wheels”

Mac was happy, the kids were impressed.  His wheels were reminiscent of a caterpillar wearing shoes (with eight pairs on there he wasn’t too far off the mark).

I still haven’t managed to read Shumann the Shoeman so can’t offer you a review.

Who knows, Mac might decide to borrow it from the library one week so we can both share in the story.

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.

i have a dream…

Well I have this dream for some years now.  It’s not that I haven’t done anything about it, it’s just that there is a limit to my skills and knowledge and an even more finite limit to my finances.

Some years ago I trawled the internet studying all the LEGO Mindstorms NXT Robotic Technology geniuses to see who I felt was the best in the world.

My intention… to see if by combining LEGO Robotic Technology with lightweight electric cars we could develop light weight, affordable and safe mobility devices which could not only ‘follow lines’ and ‘avoid obstacles’ they could localize themselves in known environments providing safe passage for users like Mac who have significant vision and mobility issues to contend with.

I tracked down Daniele Benedetelli, an Italian Automation Engineering Masters Graduate who is, not only a robotics legend, but also a musical genius… therein solving my personal shortcomings as I don’t believe Danny has a limit to his skills and knowledge.

He was enthusiastic about the project and despite neither of us having any money to ‘pursue it full time’ we have been collaborating (time permitting) ever since.

Here is an application Danny has submitted for our project to Campus Party Europe, hoping to gain the support needed for development.

It is nice to have a shared vision of lightweight, affordable, smart wheelchairs for EVERYONE with someone who doesn’t even come from the disability sector.

I abhor the idea all the therapists and medicos involved in the lives of our children believe ‘learned immobility’ is acceptable.  I resent all these organisations who receive money because OUR children have disabilities think it is OK to compromise their lives.

I will keep chasing this dream because one day this might mean at the very least:

AT SCHOOL:

• Mac can move himself around/between classrooms – further reducing the need for ‘teachers aide/personal attendant’ support.
• Mac can transport himself around the school either by following specific coloured lines, algorithmically mapped safe passage or ‘free wheeling’ with obstacle avoidance.
• Mac can deliver message to the office, collect items required by the teacher or run errands just as the other students do.
• Mac can go where he wants and be with who ever he choses during break time.

AT HOME:

• I can ‘call Mac for dinner’  and he can come (or not) of his own volition,
• I can send Mac out to round up the chooks to put them to bed for the night, feed the dog or close the gate.
• Mac can leave and enter any room in the house whenever he wants to.
• Mac could decide to ‘pop’ up the hill to visit his Grandparents or his cousins… all by himself.
• Mac would have independent mobility that is inexpensive and really “smart”.

It is certainly worth the challenge – for all kids, not just Mac.