iMourn…

In 2012 I commemorate the first International Day of Mourning and Memory of the Lives of People with Disabilities. 

This day… was created to call attention to the crimes against the lives that could have been lived, that should have been shared. It is also dedicated to those who continue to rise and fight, who refuse to be silent, who advocate long past exhaustion.  Dave Hingsburger

And I share what this day means to me…

I don’t mourn disability and ask you don’t mourn my child’s disability.

I do mourn for the lives lost and potentially still being lost because of disability.

I mourn the child being excluded from a mainstream class because a teacher doesn’t want to teach everyone… and claims “there is special teachers & places for that?”

I mourn the child (and family) not being allowed to dream, to have their life filled with constant cries of “he wont, he can’t, he’ll never…”

I mourn the lives being damaged by disability systems that are built around the charity and pity model of care.

I mourn for the children being suspended from school because the adults around them aren’t being kind or fair, they set them up to fail and then blame it on “behaviours”.

I mourn that even now, in this day and age, there is still a desire to segregate, to have “special programs” to create a line through the community, to foster a ‘them and us’ mentality without thinking through the damage it can cause.

I mourn the people who have gone before us and fought this fight only for many to see it was only temporary and watch, as decades on, we are still fighting for the same stuff.

I mourn for those who don’t have a say, who are deemed unable to communicate even though their facial expressions speak volumes and could tell you much… if only you bothered to look at their face.

I mourn for those still living in an institution setting – despite there (supposedly) being “no more institutions in Australia”.  An institution is not based on the number of people under one roof – it’s about the freedom and choice a person has.  A family home could be as detrimental as an institution if there is no goal for a good life, no love, no freedom and no support for growth.

I mourn there are still special schools built on the institution model… but because the people working there are “kind and caring” and a sense of “safety” is trotted out to parents they don’t get challenged.

I mourn the grown up man still being referred to as a ‘kid’ by his family, dressed in babyish ‘tigger’ t-shirts, a man who may very well be over-loved, but under-estimated.

I mourn the children whose families buy into the “he won’t, he can’t, he’ll never” and hope someone, somewhere, steps in.

I mourn the loss of Anne McDonald her voice was one we needed.  I fear without her presence the tragedies of the past could easily be repeated.

I mourn the fact we know better yet aren’t always doing better?

kobo, “How do I love thee? Let me count the ways…”

I have been going back and forth on what eReader and/or software to consider for Mac or whether to bother.

Since we have been experimenting with the magnifying screen reader at school it appears that Mac may actually be reading more than we thought.  And, considering we are always going to be lugging around technology, it seems silly to carry books around too.  Mac will never be able to hold a book and, despite decades of people trying, it seems no one has ever perfected a portable, affordable, mechanical book holder and page turner.

I stumbled upon Kobo which I guess started as an alternative to Kindle.  Like most things we aren’t anyone’s “target market” – I have learnt to accept Mac’s needs/requirements are far more “bespoke”… but I have to admit to being really happy with what Kobo is offering us so far.

CLICK IMAGE TO WATCH VIDEO ON eREADING

Image courtesy of:  http://www.kobobooks.com

 

We HAVE NOT worried about buying an eReader.  We use the school iPad, our Mac mini (plugged into the large loungeroom TV) and Mac’s Dynavox vMax as his locations to store his “library”.

So how do I love thee?

I love that Mac can auditory scan into the Kobo Desktop App from his Dynavox and then his two switches are allocated to automatically take over the task of turning the pages forward and back.  In time, who knows, he may be responsible for reading his own ‘full book’.

I love that I can also sync his personal Kobo library to his iPad at school which will allow his peers to choose from his bookshelf, not just the class books, if they want to read to him.

I love that it puts a bookmark on the page you are up to and then syncs this with your other locations when you open them.

I love that it has a dictionary option so if you press/click on a word while reading you can look it up in the dictionary right there on the screen.  We’ve only used this feature on the iPad – not sure if it is available on desktop versions.

I love that you can add notes in the same way which will be particularly useful in years to come I imagine.

I love that you can change the screen colour and font size to suit the user.

I love that the graphics look like real bookshelves – attractive, colourful, fun and motivating.  I love too that you can build your own shelf groupings for better management of your books.

This is Mac’s bookshelf so far…

So… any negatives?

Sure – nothing is perfect.

I would love to be able to buy a number of books at once – this may happen as they keep improving their site, currently there is no ‘shopping cart’ option but they do now have Paypal.

I don’t believe you can access the bookstore via your iDevices and the Kobo app – I thought you used to be able to so this may be a recent change (I’m thinking someone may have upset the “Apple” cart).

I would love to be able to have some sort of screen reader access for those with a vision impairment like Mac.  I haven’t tested this fully yet, but don’t believe it can happen – for now we use Audible for our audio books and Kobo for our eBooks.  Audio books are far nicer to listen to than a screen reader but every now and then a screen reader might be useful if Mac got too fatigued to read and it would be good practice to get used to screen reader technology and voices.

I would love to have the Kobo desktop version (PC & Mac) bookshelf switch accessible so Mac could scan through his bookshelf, select a book and then read and turn pages with the same switches he currently uses for auditory scanning on the Dynavox.  Of course, it would be great to have the iDevices switch accessible with R J Coopers switch plug - this would require a little bit of ‘app updating’ from Kobo, but hey, you never know…

But for now, we are pretty happy with our Kobo experience.

What eBook and eReader sites are you using?

been gone too long

Well I am back to a semblance of normality after the whirlwind of school holidays (we took an extra week) and a flurry of activity on the home front since then.  All going well I will catch you up on events since my last post over the next week.

a mysterious excursion

Mac had a school excursion.  It was to the local animal park on one of our coldest days this year.  For some perspective… our animal park is not a big, fancy ‘zoo’.  It is a small wildlife park in a regional town – there’s some interesting animals there – but it’s pretty modest.

When he got home from the excursion we discussed his day using his yes/no switches.  He was completely over excited and ready for a whole lot of silly.

Here’s the upshot of what I managed to find out, that is… “the day according to Mac”  and an example of how we get to this kind of information – although I won’t subject you to the entire convo, it went on for some time.

Never let the truth stand in the way of a good story… eh Mac?

more MyReader…

The myReader2 is getting a decent workout by Mac’s aide Ms M.

She has declared her “love” for it after just two days…

Things she likes doing:

• scanning a few pages of the reader for Mac and his reading group so he can read along or everyone can see it on the screen;
• set the text from the book onto a suitably timed scrolling speed;
• putting Mac’s spelling words on the screen and having him copy them down using morse code NOT telling him what the word is (I think he only typed 4 words less than his peers wrote);
• scanning the ‘editing’ paragraph and have Mac tell her what letters/items need to be changed;
• using it in ‘live view’ and putting real items (counters/toys/dice) on the base and using them to ask questions on arrays etc;
• scanning the maths worksheets and seeing just what he can answer with very limited, or at times, no instruction.

Sample of Mac’s work using the myREADER 

Of course I am always going to have reservations about an expensive bit of equipment that is big, bulky and only available to use during school hours.

I would hate for it to just sit there not being used effectively.  So… if it is decided the benefits outweigh the few reservations I might have then I might try and ‘cut a deal’ for a brainstorming session on how many ideas we can come up with to use it as an inclusive tool for the entire class.  That way we could make up a cheat sheet with ideas on it that could be attached to it and I would feel so much better… it really is the little things.

Have you got any ideas for activities or how it should be positioned/located in the classroom?

myReader2

Mac is test-driving a desktop magnifier at school at the moment.  It will be really interesting to try and ascertain just what information he may be able to take in visually and how he finds it.

On his first ‘product review’ he claimed it “makes reading easier to see”.   I know… it’s a confusing little muddle of verbs and nouns he used there.  But it is an improvement, this time last year when he didn’t even acknowledge he could actually “see” – he accepted he could ‘look at stuff’ and ‘know what it was’ but not “see”.   Our 12 month propaganda campaign to convince him he actually can ‘see’ has paid off a little.

CLICK THE IMAGE BELOW TO VISIT HUMANWARE

On his first day using it he was able to copy down three words and type them back in morse code with just one error.

The myReader2 is a big bit of equipment – not the most ‘inclusive’ bit of kit.  Nevertheless it will be great to see just how much benefit it might bring and whether that outweighs the sense of ‘extraction’ Mac might feel when using it.   Used smartly for Mac and other students it could be quite an ‘inclusive technology’ it would take some rethinking and restructuring, but could work.   My main reservation about it is the need to be ‘tied to a desk’ with it and I guess I would like to rule out trying to ‘make do’ with something like the iPad or other methods to achieve similar outcomes before I was prepared to commit to it.

I am not convinced Mac needs the magnification so much, but rather needs the visual information to be in a more suitable location.

I’ll keep you updated on how we find it.

fridge magnet friday

CLICK IMAGE TO VISIT MARA SAPON-SHEVIN’S WEBSITE

not acceptable

spread the word
to end the word

from the website…

“Not Acceptable” is a powerful and compelling 30 second television PSA which gives voice to a variety of diverse communities each of whom expresses that it is not acceptable to call them by what were once common words, but are now recognized as offensive slurs. It culminates in actress and self-advocate Lauren Potter from “Glee” stating that it is not acceptable to use the word ‘retard’ and she and “Glee” co-star Jane Lynch make a call to action to stop using the word and to promote the acceptance and inclusion of people with intellectual and developmental disabilities and to make their pledge online at http://r-word.org.

The PSA was launched by the Spread the Word to End the Word campaign, an on-going initiative from Special Olympics and Best Buddies to eradicate the derogatory use of the word “retard(ed)” from everyday use and promote the inclusion and acceptance of people with intellectual and developmental disabilities.

“Not Acceptable” was executive produced by Jim Serpico and Tom Sellitti of New York based Apostle, and shot, produced and edited by Spot On Productions from City Island, NY.

The PSA is supported by several national advocacy organization including the Anti-Defamation League, Special Olympics, Best Buddies, GLAAD, The Hispanic Federation, National Puerto Rican Coalition, The Asian-American Foundation, AbilityPath.org and the NAACP.

How attached are you to keeping this word in your vernacular?

housekeeping

Finally the links on the Papers & Presentations page are working.

Two updated files are there.

Kindergarten or Bust from 2008 (previously linked), and
Early Childhood: a time for inclusion from 2009 (a presentation to early childhood and early intervention educators).

I still have the AGOSCI paper to upload when I get they formatting to do as it ought to and there should be one or two others kicking around somewhere.

Cheers

Gina

iLove

At the Independent Living equipment expo Mac and I attended we were very keen to catch up with the latest developments from the guys at Dynamic Controls from NZ.

I have been following their stuff for a while… Liz (Poppy’s mum) brought it to our attention back in 2009.

Mac and I had registered for a mini-seminar with them and, as they were just near the entrance of the expo, had the chance to catch up with them prior to the seminar.

WOW…  I am so impressed and excited by their ‘soon to be released’ iPortal.

They currently have an interface with the iPhone/iPad for your powerchair to assist with real-time management of your chair

BUT 

with the iPortal upgrade

you can use your drive method (be it joystick, switch array etc) to control you iPhone, iPad. 

Watching it in action they had the phone in Voice Over mode and were simply using the joystick on the powerchair to move left and right (scan) through the apps then had a select movement (not sure if it was forwards or backwards) to select and open the app.

Mark (from Dynamic Controls) was quite interested to hear Mac is using his two foot switches for Morse Code as they have also added in Morse Code entry as an alternative to linear scanning through the iPhone’s QWERTY keyboard.  In their demo it was a left tap of the joystick for ‘dot’ and a right for ‘dash’ and it spoke each letter aloud as they typed them.

Of course, Mac managed to get himself an honourable mention in the seminar as a “morse coder” and potential user.  I think the guys were actually pretty chuffed their ‘gut feeling’ and decision to incorporate Morse as an access option was justified.

Check out the video… the really interesting stuff from an iDevice access perspective kicks in around the 1:30 min mark.

So now, I just need to convince them of the need for a bluetooth interface to ‘emulate’ a powerchair so Mac can access his iDevices with a switch array and any other user can do so not only from their powerchair but from any location (lounge/bed/car) they choose.

I admit to having a bit of a soft spot for New Zealand neighbours… they do tend to impress me constantly with their innovation and ability to think outside the square.

I am particularly in love with another NZ invention the YikeBike (and would love to see a wheelchair version… that would be sweet).

more specifically… which reindeer?

We were at a disability equipment expo.  Mac (in his mostly ‘home made’ wheelchair) and I were mooching around looking at what’s new, innovative, desirable and, of course, a pipe dream.  We were also lamenting most of what we really want isn’t yet invented.

There weren’t many other kids there – it was a school day afterall.  But one young girl and her parents made a bee line for us.

They wanted to know where we had got Mac’s spoke protectors from – they hadn’t seen any like that.  Mac had his aboriginal art covers on – made from wrapping paper and clear contact.  I explained how we made them to the Mum.

Then I spoke to Miss H (who had a neat little wheelchair with butterflies and flowers on her spoke protectors) and explained to her how she and her mum could easily change covers really regularly, she could think up great designs for different themed events  (yep,her mum was semi-glaring at me, slightly bemused and probably wishing they never introduced themselves).

I told her about Mac’s Xmas chair when he was “little” and how it had two reindeer on the front & flashing lights.  Mac was grinning at her and looking slightly ‘self-important’.

She checked a couple of facts – did the lights have batteries? how did the reindeer attach to the chair? and then “which reindeer where they?

Heh, I didn’t actually know which reindeer they were…

“We’ll have to ask Mac about that” I told her as I grabbed his yes/no switches.

“He’ll have to use his feet to answer yes & no”, I explained.

Mum:       Mac, Miss H wants to know which reindeer were on your chair - do you know?

Mac:          YES

Miss H:    Was one Comet?

Mac:           NO

Miss H:     What about Dasher?

Mac:            YES

Miss H:      Um, Dancer?

Mac:           NO

Miss H:     (with her Dad’s suggestion) Or Prancer?

Mac:           NO

Mum:        Oh, we forgot Rudolph? was the other one Rudolph?

Mac:          YES

Miss H:     Oh, so Dasher and Rudolph, huh cool.

It still amazes me what is important to kids.   I had NEVER considered what the names of those two toy reindeer were.  I also love the fact that had Mac not previously determined which reindeer they actually were he is able to just ‘makes stuff up’ like all kids do to suit the situation.

With that, we parted ways and Mac and I continued collating our mental wish list of equipment we may want/need/covet now and in the future.

I do look forward to the day Mac doesn’t need me to hold his foot switches, a day when he can be an independent communicator.

But, for now I enjoy that pretty much everyone accepts his method of communicating particularly when the conversation is natural and normal.  Sure I maneuver the convo around to get it in a format Mac can contribute, but then Miss H just naturally asked Yes/No questions without missing a beat.  It’s not that hard really.

my kid is a “cheater”

It is that time of year again.  Cross Country events are upon us.

As you know Mac has taken part for the last two years “running” in his ‘chariot’ jogger with an ‘able assistant’.

PREVIOUS POSTS
2009 X-Country
2010 X-Country

This year Mac and his aide ‘Ms M’ were teamed up for the  8 years Boys event.

The races are getting longer each year and this year took place at the Cross Country course proper (not the park near school).   The Cross Country course is next door to our property on my Uncle’s property so Mac was definitely in his ‘natural habitat’.

Shawn was in charge of drop off & collection for the day.  So, when Mac got home I asked how he went.

Shawn explained that, apparently, Mac came in first place…

“but there may have been a disqualification on the basis there was suggestion of a ‘short cut’.”

I asked Mac…  “did you do something sneaky?”

Gosh, whoever said “boys can’t lie to save themselves” was right (hey, maybe that was me that said that, it sounds very familiar).

Mac’s face was the sneakiest, cheekiest look you have ever seen.  He dips his head and tilts it to the side, his eyes shoot to the right with a slight squint, the arms come up and cross in front of his lap and his mouth is just the epitome of the ‘sly grin’.

Clearly – there had been some skullduggery afoot.

The next day Ms M was telling me how she and Mac had started out strong then found a cutting in the track suitable for ‘taking a break’.  She said they were killing themselves laughing at just how funny they were hiding from everyone and out of sight of the spectators.  They had found themselves particularly entertaining when they joined the front-runners as they came back around.  Ms M does a very good job of ‘winding Mac up’ into hysterics and I think he really enjoyed the sneakiness of their approach.

Thankfully we have a school of good sports no one seems to have cared that Mac cheated.

Mac has agreed that:

• “YES”, he thought it was very funny to take a short cut, and
• conceded that “YES”, it is OK he was disqualified under the circumstances, and
• “NO” he doesn’t care he won’t compete at the next level.

I think it’s great for him and the other kids to see the fun side of these events.  It helps the other kids learn that it’s ok to be light-hearted and, let’s face it, when there is no way Mac is ever going to truly compete against them on level playing field – it’s ok for everyone to have a laugh along the way.

It all goes a long way in helping them to learn they don’t have to be ‘precious’ about disability – Mac’s not.

the NEWELL network

One of the pre-conference  workshops I attended at AGOSCI 2011 was all about telecommunications.  I was interested in this topic as I would love Mac to be able to ring his Grandparents and thank them if they have looked after him, or tell them something cool he did at school.  I would love to be able to have more meaningful conversations with him when I am away (I am sure his Dad is the same).  Among many of the great ideas and options including the National Relay Service, Skype, large button phones, switch adapted phones there was one VERY new concept we were introduced to.

The launch of the following website…

Fresh out of the box is a new website for people with complex communication needs (CCN) (& supporters/helpers) who find it hard to use the phone independently.

So what is it?

CLICK IMAGE TO VISIT WEBSITE

.

The Newell Network will help you:

• find out about telecommunications resources.
• ask questions, and talk with others who can help you.
• share your experience and knowledge.
• discuss and try to solve problems.

As with all these information sharing websites they are much better if populated with lots of questions, ideas and ‘big picture dreams’ so try to use it  – you never know what solution someone might find.

If you had one telecommunications idea you thought was ‘too crazy’ to ever be invented what would it be?

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.

fridge magnet friday