Via: http://praacticalaac.org/strategy/creating-communication-opportunities-for-the-older-learner/

                               

 

Creating Communication Opportunities for the ‘Older’ Learner

 

The Strategy of the Month involves AAC and the ‘older learner’.  The ‘older learner’ involves a range of ages (We are ‘older learners’ for way longer than we are children)  as well as a wide range of functioning levels.  Even with this variation though, we know that ALL older learners can learn.

There are challenges with ‘older learners’ that need to be addressed in order to facilitate spontaneous and generative communication and language. The challenges may result from years and years of going to intervention (some of it effective, some not), from perceived failure by the learner and/or the professionals, or may even just be related to that ‘teenager or adult’ independent streak.  These challenges can definitely be overcome in order  to help develop a functional and robust communication system for ALL learners. Just remember respect the learner as a competent teenager or adult (e.g., think what a typical language user might say or do).

 

One of the first things that we need to do is create meaningful communication opportunities. This is often the fun part as the opportunities can involve things we ALL like to do and learn about.  To get started with creating communication opportunities, there must be the mindset of presumed competence. This is often more true for this group of learners than any others.

 

Begin with the philosophy of PRESUMING COMPETENCE, Communicate Accordingly and Create Communication Opportunities:

 

Communication Opportunity Foundations 

• The communication opportunity must be meaningful to the learner- Believe it or not, this is often hardest to do, because what is meaningful to the learner might not at all make sense to you. However, it is really important to being effective. ‘Older learners’ tend not to do things just because you want them too, or if they do they do not put in all that much effort. So think about what is really meaningful to the learner. Just as ‘older’ varies in age and level, so does what is meaningful. Some examples  include:  ”being left alone”, socializing by saying “hello” to many people, playing only with balls, drawing, opening presents, playing with a ‘baby toy’, having a friend, not having a friend, science, photography, and the list goes on.

 

• The communication opportunity must be authentic – Set up ‘real’ ways for the opportunity to be available to the learner. Make the situation and materials fit the opportunity

• The communication opportunity must look and feel age appropriate-  This may seem obvious but sometimes interests do not coincide with age appropriateness. If the toy or materials are for younger learners, you can categorize them as that and put them into a context of the older learner (e.g., writing a book about ‘barney’ or making a video about ‘barney’.). If you are doing science make sure the pictures, experiment, materials look adult like even if the response mode is at the one word/symbol level.

Beginnings to Creating the Communication Opportunity

• The communication opportunity may begin with choices- We all do better with choices and each choice is a communication opportunity. Even if you are offering the choice of  playing alone at the table or on the floor you are presenting a communication  opportunity. Other choices can include:  topics to ‘talk about each week’ in a month, vocabulary words to work on, materials to write with, who to talk to, etc…the list of choices is  limitless.

• The communication opportunity may need to be a communication temptations- Communication temptations are structured situations designed to entice communication. Communication temptations may involve lock boxes or cabinets, enticing pictures, leaving out key ingredients or utensils, being absurd, and much much more. The only difference between communication temptations for younger and older learners is the acting skills and creativity of the facilitator.

• The communication opportunity should be cool.  The ‘cool’ factor is important for everyone. It needs to seem cool for the learner. The pictures/materials, etc need to ‘spark’ excitement in anyone who sees them.  Even if the ‘cool factor’ is boredom, that could be the enticing communication opportunity (e.g., “math is soooo boring”).

Sample Communication Opportunities
           
Communication opportunities can be derived from things or information depending upon the individual learner. The possibilities as said before are limitless.
Strategies to Facilitate Learning from the Communication Opportunity

• Think Aloud Strategy- Speaking about your thoughts as you work through different communication processes gives the learner insight into how you solved a problem, how you experienced an event, how you are thinking and helps them learn how to as well.

 

• Aided Language Input (ALI)- Use AAC when you talk. ALI is modeling AAC Style.

• Turn Taking as Speaker & Listener- Participate in the activity, be a communication partner rather than always telling the learner what to do. Always try to make the project, do the experiment as this serves as a model but also allows the learner to see you think the activity is worth doing.

• Decrease Questions- Questions are a demand for all of us. No one likes to have demands and pressure placed on them to communicate. Check out 5 Ways to Elicit Language without a Direct Question by Carole Zangari for ideas and strategies to do this.

• Wait & Signal- Use the expectant pause often as a way to show the learner you expect them to take a ‘conversational turn’

• Following Learners Lead- This means be willing to diverge from topic at times when something more meaningful to the learner comes up. Be flexible, sometimes the communication opportunity is talking about the ‘mean girls’ in class, other times and levels may mean it just is a request for break kind of day. We would always prefer the communicative opportunity asking for a break 20 times per session versus fighting for compliance with an older learner (only true though if requesting so many breaks is not typical).  An example of this happened recently with a 17-year-old we see. All of a sudden he stopped wanting to surveys around our clinic. It was a little bit of a dilemma because mom wanted him to socialize.  However, since it was so out of the ordinary, we honored a break and a different activity choice. Then a week later we found out that ‘Mikey’ had a back injury and did not want to get up and walk around. We were very glad we honored following his lead.

• Repetition with Variety- Keep presenting communication opportunities that work in a variety of setting, with different materials, with different people, etc. The more repetition with variety of prAACtice, the more likely for the language to generalize.

Please share your fun ‘older learner’ communication opportunities

About the Author

Robin Parker Robin Parker Robin Parker is a professor of speech language pathology who has loved supporting the communication and language of children and adults with autism spectrum disorders for more than 20 years. One of her professional passions is spreading the word about PrAACtical AAC. “Alone we can do so little, together we can do so much." Helen Keller

 

I love Graham Pullin's book and recommend it highly!!

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All Technology Is Assistive Technology

Six dispositions for designers on disability

 

• 

Unknown Armature: Body Socks / Sara Hendren

• Sara Hendren in Thoughtful Design

 

In 1941, the husband-and-wife design team, Charles and Ray Eames, were commissioned by the US Navy to design a lightweight splint for wounded soldiers to get them out of the field more securely. Metal splints of that period weren’t secure enough to hold the leg still, causing unnecessary death from gangrene or shock, blood loss, and so on.

The Eameses’ unpainted wood splint, curved at its edges to keep the leg from falling off, with a targeted set of slots and holes for tying secure restraints.

The Eameses had been working on techniques to mold and bend plywood, and they were able to come up with this splint design—conforming to the body without a lot of extra joints and parts. The wood design became a secure, lightweight, nest-able solution, and they produced more than 150,000 such splints for the Navy.

Over the next decade, the Eameses would go on to refine their wood-molding process to create both sculpture and functional design pieces, most notably these celebrated chairs:

A classic model of an Eames recliner and ottoman, each with an understructure of molded stained wood, highlighting the curve of the grain around its edges, and black leather upholstery.

Graham Pullin, in his book, Design Meets Disability, cites this story as an example of a seemingly specialized design problem—a medical aid for disabled soldiers—that inspired a whole aesthetic in modernist furnishings. The chairs that launched a thousand imitators, and a new ethos of simple, organic lines in household objects.

It’s easy to assume that the innovation would more often happen in reverse: that a generalized design solution would “trickle down” to the narrow confines of adaptive and assistive aids. But this example, as Pullin points out, suggests that disability concerns are an overlooked area of aesthetic generativity, with relevance and impact for design far outside its starting questions.

More than that, I think it demonstrates why everyone should pay more attention to disability matters.

You might imagine that “disability studies” is just one more category of identity that’s purely for political advocacy, interesting only to those directly affected by issues of accessibility, accommodation, or special rights. But “disabledness” is a far more slippery designation than even the other notorious ways cultures have of historically organizing themselves—along the lines of race, gender, ethnicity, and the rest. And while these latter categories have also been shown to be much less stable than once thought, disability is another matter altogether. There are at least two big reasons why disability concerns are everyone’s concerns.

First, it’s a false divide to make a we/them: either able-minded, able-bodied, or disabled. After all, how cultures define, think about, and treat those who currently have marked disabilities is how all its future citizens may well be perceived if and when those who are able-bodied become less abled than they are now: by age, degeneration, or some sudden—or gradual—change in physical or mental capacities. All people, over the course of their lives, traffic between times of relative independence and dependence. So the questions cultures ask, the technologies they invent, and how those technologies broadcast a message about their users—weakness and strength, agency and passivity—are important ones. And they’re not just questions for scientists and policy-makers; they’re aesthetic questions too.

Second, in many cultures—and certainly in the US—a pervasive, near-obsession with averages and statistical norms about bodies and capacities has become a naturalized form of describing both individuals and populations. But this way of measuring people and populations is historically very recent, and worth reconsidering.

Disability studies scholar Lennard Davis writes that

“before the nineteenth century in Western culture, the concept of the ‘ideal’ was the regnant paradigm in relation to all bodies, so all bodies were less than ideal. The introduction of the concept of normality, however, created an imperative to be normal, as the eugenics movement proved by enshrining the bell curve (also known as the ‘normal curve’) as the umbrella under whose demanding peak we should all stand. With the introduction of the bell curve came the notion of ‘abnormal’ bodies. And the rest is history.” Bending Over Backwards: Disability, Dismodernism, and other Difficult Positions

You all know the bell curve, of course.

A chart of a classical bell curve, this one measuring “the severity of language disorders.” Standard scores, as usual, fall into the widest part of the curve.

It’s the source of all talk about how individuals measure up, relative to others. In case you doubt this obsession, I invite you to witness the conversation among parents of young children: It’s all percentiles, and milestones, and being “ahead of the curve” with respect to each month of a child’s development. Exceptional normal-ness is what they prize above all else, and it’s these measurements that can reassure anxious caregivers, despite little correlation between these measures and a lifetime of wellness, healthy relationships, or sustaining work.

Again, Davis reminds us that this is a recent set of cultural ideas, so unquestioned now that these standards have a way of “enforcing normalcy.”

Of course,as Davis writes,“it’s too easy to say, ‘We’re all disabled.’” But it’s a challenge to interrupt cultural assumptions in powerful, creative ways—and to alter wider collective thinking about one’s own individual dependence, independence, and that of others.

So how might designers and artists engage these myths about what’s normal, and make more visible, critical, and expansive technologies that keep these questions alive?

Well—it’s worth saying again: All technology is assistive technology. Honestly—what technology are you using that’s not assistive? Your smartphone? Your eyeglasses? Headphones? And those three examples alone are assisting you in multiple registers: They’re enabling or augmenting a sensory experience, say, or providing navigational information. But they’re also allowing you to decide whether to be available for approach in public, or not; to check out or in on a conversation or meeting in a bunch of subtle ways; to identify, by your choice of brand or look, with one culture group and not another.

Making a persistent, overt distinction about “assistive tech” embodies the second-tier do-gooderism and banality that still dominate design work targeted toward “special needs.” “Assistive technology” implies a separate species of tools designed exclusively for those people with a rather narrow set of diagnostic “impairments”—impairments, in other words, that have been culturally designated as needing special attention, as being particularly, grossly abnormal. But are you sure your phone isn’t a crutch, as it were, for a whole lot of unexamined needs? If the metrics were expansive enough, I think the lines around what’s designated as assistive would start to get blurry pretty quickly.

Undoing the distinctions between design for disability and design in general yields a couple of goods: It brings new attention to technologies that are profound in their use and impact on physical and political accessibility. The advanced replacement limbs, all-terrain wheelchairs, and exoskeletons you can find now are evidence of this new attention.

It also brings a productive uncertainty and a powerful friction to the task of designing technologies of all kinds. Whether you’re designing for an established need or seeking an application for a technical novelty, you might take more time before confidently assigning it to a user, or to over-determining its modes of deployment—it might be for practical ends, or for play, or for something else you’ve not yet imagined.

Instead of labeling some technologies and not others as assistive, let’s start like this: We’re all getting all kinds of help from the things we make. All kinds of help, all the time, for our many material and social and educational and political needs. Private needs and public ones. No one is exempt. Then the questions get really interesting: What can a body do? What needs are you interested in? Who might use which thing for what? Where might the surprises be? How might a familiar thing morph into something else altogether?

In the name of good friction, then, I want to suggest some possible dispositions for designers and artists taking a look at ability and disability.

1. Question invisibility as the assumed goal.

These hearing aids are reconsiderations of an until-recently neglected prosthesis. Long designed with dubious “flesh toned” plastics and metal circuitry, these devices are now a site of generative research about the nature of hearing. The Victoria&Albert museum’s 2006 exhibit, Hearwear, commissioned designers to reconsider hearing as an under-examined area of exploration.

A woman wears a jewel-like hearing aid, similar in size and shape to an earbud, draped around the back of the head with thin, elegant wiring.

A woman wears a necklace that falls from the back of her ears to form a lariat-style pendant beneath her collarbone.

“The Beauty of Inner Space,” a design by Ross Lovegrove, above, has more in common with jewelry than medical gear. His proposal would have this aid amplify and mute sounds at the user’s discretion—highlighting sounds you want to hear and canceling out others. And the Svara hearing aid, below, is a proposal to make amplification gestures blend seamlessly with other naturalistic movements: moving the necklace’s “pendant” up or down, for example, or tucking one’s hair behind the ears.

In other words, one strand of design might be devoted to making hearing aids as discreet as possible—to hide its function from view. But another round of questions becomes more interesting altogether: What might a hearing aid also do—or do instead—that’s never even been considered?

See more hearing aids in the exhibition covered by Designboom.

2. Rethink the default bodily experience.

Researchers at Georgia Tech re-imagined wheelchair navigation for quadriplegic users—with a tongue driver. It’s a wireless device that allows those who have high-level spinal cord injuries, and therefore little or no limb movement, to operate computers and their own electric wheelchairs.

Placing the controls in headsets, say the researchers, made them susceptible to getting jostled and needing frequent recalibration. Moving the entire system inside the mouth makes it stable and reliable, and the tongue’s receptors are sensitive enough that the user can move a cursor on a screen and direct a wheelchair in the way a joystick would have in the past. And the entire system can be programmed for many complex commands at once.

Instead of approximating a hand movement with joystick directionality, this system exploits a built-in sensitivity goldmine, protected from outside elements. Sometimes heightened functionality is about reconsidering typical adaptations entirely, inverting the expected sensory mechanism.

3. Consider fine gradations of qualitative change.

I’m as much a fan of the exoskeletons and bionic limbs as the next person. But there are far more subtle changes for bodies over the lifespan for the designer also to address. Some of the most interesting ideas pose ways to “edit” built environments that already exist, to accommodate more bodies more of the time.

The Wanderest is just that kind of edit: a perch for pausing on the otherwise relentlessly forward-looking streetscape. As cities consider their usability for aging populations, this kind of accommodation might be as important as newer, “smarter” nursing home environments. Could small structures like these make streets more navigable, make independent living more attainable for a longer period?

A molded wood perch or chair, with curvilinear strands that welcome a sitter and a body that attaches to a telephone pole or streetlight.

The same Wanderest perch, this time with a human sitter in it.

So many medical technologies for treatment are just that: medicalized. They operate with the assumption that a change in ability is primarily a biological condition, without thought for the broader ways the built environment can expand and shift to welcome multiple kinds of bodies and experiences.

4. Uncouple medical technologies from their diagnostic contexts.

Temple Grandin is a research scientist in animal husbandry and now a well-known self-advocate for people with autism spectrum conditions. Grandin has revolutionized the cattle slaughter process, creating far more humane tools and practices for a huge percentage of slaughterhouses all across the U.S.

Along the way, one of the technologies she developed is a “hugging machine” that provides a deep, calming pressure to cows as they enter the conveyor belt toward their deaths. The pressure creates stillness, reduces panic, and makes for a cleaner, less violent death for the animal.

As she developed this machine for cattle, Grandin intuited her own need for an adaptive “hugging machine” that would provide her with a proxy for human touch. For someone whose interpersonal interactions were often confusing, she found that this machine delivered a kind of affection and calming influence that she needed but wouldn’t get from a typical kind of human relationship.

Artist and MIT professor Wendy Jacob proposed a collaboration with Grandin to modify and replicate the hugging machine—in the form of these “squeeze chairs”—furniture that gives you a hug.

Boxy upholstered chairs include square, arm-like extensions that press inward from the chairs’ edges—here embracing a young sitter.

What happens when a tool used for therapeutic reasons also points outward from a diagnostic mode toward something more ambiguous, entering the realm of the poetic? Why shouldn’t a critical object like this one possess more affect, be more responsive? When an object’s uses and users get less clearly marked, new stories about that object and its users can suddenly emerge.

5. Design for one.

Michail Vanis, a young interaction designer charged with a design brief about “the future of work,” started to think about his grandmother Despina’s retirement from her job as a seamstress—a job she valued for its camaraderie of fellow workers at their sewing machines in a shared physical space.

After her retirement, it wasn’t that Despina needed a chair or adaptive machine to allow her sew in her elder years; it was that she missed the togetherness of colleagues. So Vanis created Social Sewing, a complex of sewing machine avatars that activate when her now far-flung colleagues were also laboring in their post-work contexts.

A close-up view of white-and-dark-stained wood miniature sewing machines, each complete with “needle” and swatch of fabric.

A woman smiles in front of her own sewing machine and three small machine avatars that activate when her former colleagues are also sewing.

This project is about productive, radical constraints: it narrows the design question to a single user, but it suggests a much wider frame for thinking about the “future of work” in all its crucial qualitative senses.

6. And this is perhaps the most important: Let the tools you make ask questions, not just solve problems.

The tricky part with popular prosthetic design—bespoke artificial limbs and such—is an overwhelmingly dominant trend toward making people with atypical bodies “pass” as “normal.” Plenty of well-meaning designers set out to re-design an object so that its wearer won’t “appear disabled,” with the presumption that a preconception of “normal” is always desirable.

Yes—of course—some users want discreet tools! But others roundly reject the notion that all bodies should conform to some standardized or performative ideal.This kind of variability and disagreement should also be a generative friction for the designer. Designed artifacts that reveal psycho-social or cultural dynamics not typically housed in an ability/disability framework can destabilize easy notions of dependence and autonomy, passivity and agency.

Jennifer Crupi, an artist and metalsmith, makes a kind of gestural jewelry:

A polished metal hand-sized tool for training one’s fingers into a power gesture: fingertips on each hand aligned and pressed together, spread wide apart from each other. A small chain attaches a tiny diagram instructing the user how to wear it.

A woman “trains” her fingers in the power gesture, with the metal tool braced between each finger tip, with nested holes for each digit.

This design above, Power Gesture, forces its wearer to assume the authoritative position of steepled fingers, held confidently and calmly in front of one’s chest. An assistive device to rehearse one’s self-presentation.

A woman wears a “necklace” of thick silver wire that ends in two curved resting bowls for her crossed forearms.

And her Guarded Gesture, above, externalizes the betrayal of emotions that’s so revealing in the crossed-arms stance. With these designs there’s a kind of comedy-with-teeth: Crupi makes a shrewd comment on the sciences of body language—and the ways humans say both what they want to express and what they wish to hide.

Questions of utility matter: Does it work efficiently? Is its power maximized? Is it user-friendly? Can it be mass produced, affordably? But questions outside utilitarian concerns also matter.Whether interrogative design, or critical design, or “design for debate,” objects and their stories can suggest a para-functionality that makes subtler needs and proxies become visible.

Allowing objects to raise and suspend questions—indefinitely suspend questions—alongside those objects designed to solve problems helps keep a complex public conversation alive about human normalcy and pathology, about needs and desires for interdependence, about the tools giving assistance to every human body.

Thanks to Graham Pullin, Katherine Ott, especially this book, Mara Mills, Tim Maly.

iPad Case review by Erin Sheldon

Via http://yvonneadrienne.blogspot.ca/p/ipaditouch.html

     

iPad Case review by: Erin Sheldon

 "This is a table where I compare protective iPad cases we have trialed  Maggie is hard on her iPad's, so its rare for a case to be Maggie-Proof. We have trialed many cases and the most Maggie-proof is the LifeProof. I also really like the M-Edge SuperShell but Maggie peels it off now (even though its clearly her favorite case)."

This is my attempt at putting all of the information that I come accross for using the iPad/iTouch, with children with Angelman Syndrome, into one place, that I can then easily refer someone to. It is my hope that it is helpful for others!



This is all under construction right now!! Soon to be improved, if you have any ideas to add, let me know! 

Filmaker with Motor Neuron Disease uses Eye Gaze to continue to make films

Via Daily Mail: http://www.dailymail.co.uk/news/article-2494162/The-doctors-told-let-Simon-die-Instead-tried-baby--ended-twins--The-inspirational-film-maker-refused-accept-death-sentence-Motor-Neurone-Disease.html

'The doctors told us to let Simon die. Instead we tried for a baby... and ended up with twins!': The inspirational film-maker who refused to accept the 'death sentence' of Motor Neurone Disease

Simon Fitzmaurice was diagnosed with Motor Neurone Disease in 2008

• He eventually ended up on a ventilator and was told to 'agree' to die
• But instead he and his wife decided to have more children
• Meanwhile, Simon has been able to continue with his work making films

By Jenny Friel

Ruth Fitzmaurice watched as the consultant, a man they had never met before, entered the hospital room and made his way towards her husband’s bed.
Simon, a talented filmmaker and the father of three small boys, lay there with a tube going down his throat, pushing air into his lungs, allowing him to breathe but preventing him from being able to talk.
They listened as the medic spelled out in no uncertain terms what he expected them to do.

Life: Simon Fitmaurice lives at home with his wife Ruth, and breathes with the help of a ventilator device

‘He basically announced that this was the end of the road,’ explains Ruth. ‘That was it, they had done all they could - that he had phoned Simon’s own consultant in Beaumont Hospital who agreed that ventilation for Motor Neurone Disease (MND) is not advocated in Ireland.’
The consultant continued, telling Simon that it was now time for him to make ‘the hard choice’ - to agree to come off the ventilator.
In other words, to allow himself to die. He told them that he knew of only two cases of home ventilation in Ireland... but both patients were extremely wealthy.
Ruth stood in the corner of the room, clutching on to her mother-in-law, Florence. ‘We were in total shock. I knew he could be heading that way but I didn’t think he was at that point already,’ she says.
‘We just cried, holding on to each other.’

 

That Simon had even been put on mechanical ventilation when he was admitted to the Intensive Care Unit with respiratory failure, according to the Fitzmaurices, appears to have been a fluke.
‘We think they probably did it and then said: “Uh oh, what have we done here?”’ says Ruth. ‘And they were stuck with him in the ICU.’
Despite the consultant’s stark and very clear recommendation, Simon refused to grant permission to take him off the machine that was keeping him alive.
‘Simon’s family very much think for themselves, and Simon in particular is a very strong character,’ smiles Ruth. ‘He wouldn’t be fazed by being told what to do by a doctor, he would question things and say: “Hang on a second.”
‘The consultant told us if he stayed on the ventilator that he wouldn’t get out of the hospital. With MND [a degenerative condition that destroys the cells that control voluntary muscles and can affect speaking, walking, breathing, swallowing and general movement] it’s like, “where do you think this is going? You’re only going to get worse. Why would you choose to ventilate?” So that’s when we decided to fight.’

Communication: Simon can use his eyes to direct a laser device, allowing him to speech via a machine

It took four long months, dozens of meetings and exhausting rounds of tense negotiations but finally a home care plan was put in place and Simon returned to his home in Greystones, Co. Wicklow in March 2011.

By this stage the disease - which RTÉ broadcaster Colm Murray passed away from this summer - had left him in a wheelchair, with limited movement and requiring 24-hour nursing care.

But shortly after arriving home the couple made another decision that this time even had many of those closest to them scratching their heads.
Simon and Ruth, who had three young children, decided to have another baby.

‘Everyone thought we were a bit mad,’ laughs Ruth. ‘But we felt in the face of death and with everything that had happened, well, kids are the ultimate opposite of all that, they’re life-affirming.’

Before: Simon and Ruth on their wedding day in 2004

Their lives were certainly affirmed when 20 weeks into Ruth’s pregnancy they discovered she was expecting twins. Their youngest son and daughter, Hunter and Sadie, were born in April 2012.
Daily life for the Fitzmaurices is now consumed with taking care of their five children: Jack, eight, Raife, six, Arden, four, and the toddler twins. There is also Simon’s condition, which has left him only able to move his eyes.

A machine allows him to breathe and he is fed through a peg tube.  But his mind, as always, continues to work constantly. A writer from the age of 14, he became a multi-award- winning film-maker and his short film, The Sound Of People, was shown at the prestigious Sundance Film Festival in the US just months before his diagnosis in the summer of 2008.
Despite his illness, the 39-year-old has completed the script for My Name Is Emily, which he explains is a feature length movie ‘about a 16-year-old girl and her quest to free her father from a psychiatric institution, helped by the boy who loves her’.
He began writing it with his hands and finished it typing with his eyes, using a high-tech laser eye device that is connected to an on-screen keyboard.

The movie has already received substantial funding from the Irish Film Board and is set to begin filming in early 2014. Simon, from his wheelchair and using the eye device to communicate with his crew, will be the director.
This week he, his family and the film production team launched an online crowd funding campaign, which they hope will raise €200,000.
This money will help pay for, among other things, specialised equipment and a longer shoot, which will allow Simon to work shorter days.
It is an extraordinary challenge that they have set themselves. But one, Ruth says, that is helping them keep their spirits up through some extraordinarily difficult times.
She also believes Simon’s writing talent has only got better since the onset of MND: he has recently finished the first draft of a book.
‘It has been quite startling to watch,’ she says. ‘Everything he says now is pretty much profound. It’s all condensed into this amazing creativity.’
At their comfortable home in Wicklow, the love between Ruth and Simon is clear to see. She turns to him regularly throughout the interview, checking facts and dates, waiting patiently for him to answer via his laser eye device.
The words Simon types in are spoken out loud through the computer’s voice, which is male with an American accent. It took some getting used to, but the family has learned to accept it and are even quite fond of it now.

Family: This photograph shows Simon and Ruth with their eldest two childrenm Raife and Jack

Dozens of family photos line the walls of the hallway and kitchen. Many are recent, showing the twins as small babies in the arms of various family members.
Others are older, from before Simon was diagnosed. They show an extremely handsome, dark-haired man with bright blue eyes and a broad smile.
One wedding photo in the hallway is particularly lovely. ‘Ah yes,’ grins Ruth. ‘We call that one the money shot.’
The couple first met when in college. ‘But Simon always had a girlfriend,’ says Ruth. ‘Then a few years later I was at a bus stop outside work. He walked by with his parents and stopped to say hello. I gave him my phone number but he didn’t ring me.’
‘She was out of my league,’ interrupts Simon.
‘I bumped into him again on the way to work, we began emailing and that was that,’ says Ruth, 38, who was working for Today FM at the time.
The couple were married in 2004 and shortly afterwards moved to a cottage in the north-east of
the country.
‘We lived in a cottage in the middle of nowhere,’ says Ruth. ‘We ditched in the day jobs, me to do my writing, Simon to do his films, to have children and a big garden. It was all going great - and then Simon got MND.’
‘I ruined it,’ says Simon. ‘It wasn’t your fault,’ smiles Ruth gently. ‘You didn’t ask to get MND.’
Ruth was pregnant with their third son when Simon travelled to the Sundance Festival over Christmas 2007 to show his acclaimed short film. While there, he noticed he had a pain in his foot.
‘There was nothing before that,’ says Ruth. ‘If anything, he was the kind of guy, when everyone else was struck down with a cold or something, he would be fine, full of energy. He lived life to the max: that was Simon, always.
‘His career was just starting out, the festival was a real wow moment, it was really going somewhere and he won these awards, then it all happened at once, it was crazy.
‘When he came home with his sore foot I had the typical wifey reaction; “Oh you’re being a hypochondriac. It’s probably the clutch in your car, it’s quite stiff, or the fancy trainers that you’re wearing that aren’t very practical.”
‘I didn’t think much of it; we were very busy at the time, we had two little boys and another on the way. My dad is a GP and he sent him to a neurologist when it got a little worse, when he was limping with it.’

Earlier days: Simon, right, films in the Himalayas

In June 2008, the test results all finally came back.
‘I was around four months pregnant,’ says Ruth. ‘My dad drove us up that day, he was possibly waiting for bad news. I remember I was in the waiting room, Simon had gone into the doctor on his own.
'My dad had come in with mud all over his shoes and I was giggling at him dropping clumps all over the carpet.
‘I was kind of in my own world, then Simon came out and he said: “You better come in here.”
‘We went in and the doctor told us he had MND. Like anyone else, I’d heard of Stephen Hawking (the theoretical physicist was diagnosed with MND when he was 21, given two years to live but is now 71) but I didn’t really know anything more than that about it.’
‘My neurologist said I had three to four years to live,’ explains Simon. ‘That was five years ago. The prognosis does not include being on a ventilator.
‘Most people with MND die with respiratory failure. A ventilator enables me to breathe, because my muscles lack the strength to do so.’ Over the next two years, Simon lost the use of  his legs and arms.
In the meantime, the family moved to Greystones, where Simon grew up and where his family still lives.
‘The progression either starts in your limbs or your voice and your lungs,’ explains Ruth. ‘Simon’s was limb onset, his legs and arms went first. Then once your diaphragm goes you can’t breathe any more. That’s usually the end of the road for most people because in Ireland they don’t advocate ventilation.’
In 2010 Simon developed pneumonia. Exhausted and unable to breathe, his family brought him to their closest hospital, where he went into respiratory failure. For some reason it was decided to intubate him and put him on a ventilator.
'The consultant, however, later advised him to come off the machine, which came as a huge shock.
‘We thought we were really far from respiratory failure because Simon was still talking,’ says Ruth. ‘In my head I thought the progression would be that he would lose his voice first and then his breathing would go.’
Simon’s will to live was, and is still, great. He refused to follow the consultant’s advice.
‘In fairness to the hospital, once they realised we weren’t going to turn the ventilator off, they began to help us put together a home plan with the HSE,’ says Ruth.
‘The HSE have been absolutely great,’ says Simon.
‘Yes, once they committed to the package they have been great,’ says Ruth. ‘We have a nurse 24 hours, one during the day and a night nurse who sits in the study.
‘We have a night monitor hooked up so they’re listening in all night as we sleep, which is obviously a strange way for a couple to live but you do adapt. We have a carer for about nine hours a day because it takes two people to get him up and all of that.
'I’ve no idea how much it costs. The HSE provide some of it, we provide some and our health insurance provides some. It’s a huge operation to keep him going.’
Ruth is also keen to point out that ventilation is not for every MND patient. ‘’It’s a very personal choice,’ she says. ‘Simon chose the ventilation; not everyone would.
‘For some people, respiratory failure is the end point of what they want or put up with.
‘Simon will probably never reach that point, he just loves being alive and wants to be with us, and that’s his choice.’
Coming home from the hospital with all the equipment, Ruth admits, was a nerve-wracking prospect.
‘We were scared; it’s like bringing the hospital home with you,’ she says. ‘But when you saw him in the ICU, with no window, it was breaking him.’
Over the next year, they got used to the new regime of having 24-hour nursing care in their home and the birth of the twins, who were conceived naturally.
‘Yes,’ laughs Ruth. ‘As Simon’s dad has said, Simon’s equipment still works!
‘The kids keep us in the moment all the time when this is going on around us,’ she adds. ‘It gives us a focus and a motivation.’
Simon interrupts at this point, saying simply in his American accented computer voice: ‘Best decision ever.’
‘For both our families,’ agrees Ruth. ‘When you’re in the hospital everyone goes into this mode of death approaching, everyone is carrying it. Suddenly these babies came along, this life-affirming thing happened. Everyone was bowled over by it and it became this beacon of hope.’
So while there have been some huge positives, what have been the hardest things about Simon’s condition that Ruth has experienced?
‘Losing his voice, although we’ve got used to the American accent now,’ she says. ‘And the food, I found that very hard. Simon has a peg tube now and he doesn’t eat. We were big foodies, a lot of our relationship was based around dinner and going out to eat together.’
But the family has adapted to their new way of life. ‘MND is a part of me now,’ says Simon. ‘It impacts every part of my life and the lives of my family. You live with MND, you don’t fight it. You create a new normality and you build a life.
‘The biggest challenge over the last five years is that MND constantly changes the condition of your life.
You are building a normality on shifting sands. So adapting becomes part of your existence.
‘In the first years, it is mourning each loss - not adapting. But we have got better at living this life. Allowing room to enjoy, to be happy.’
His relationship with each of his children has also had to change as he grew weaker. Some, like the eldest Jack, remember how he was before, while the younger ones have never known him to be any different.
‘Simon is really good at adapting,’ says Ruth. ‘As each new little person comes along, it gets harder to connect with them. With the others he had more facial movement, he could interact with them.
‘But he still found a way. Sadie will sit on his lap and he puts on this lovely guitar music and puts up photos on his computer screen.
She sits there quite happily and will chat to his face and give him a kiss. He finds a way in, he never gives up on that.’
As for any present prognosis, Ruth says they have learned to do without one.
‘We don’t look too far into the future,’ she explains. ‘Of course, sometimes you can’t help it, but in general I find it pointless. We live very much in the now.
‘I’ve just had so many times when the doctors have said: “This is the end of the road,” and it hasn’t been. There have been so many times that you begin to not believe in statistics. This is what it is, just let’s go with it.’
‘Everyone dies,’ adds Simon. ‘Stephen Hawking and my friend Tim (who also has MND) are 70.’
‘Simon is at what you would term end stage now,’ says Ruth. ‘The only thing left that really move are his eyes - and whether or not his eyes will be affected is debatable.
‘And there’s always a danger of chest infection with the ventilator. There’s been a few bad chest infections and we thought he wasn’t going to make it through, but he has.’
The day after we meet, at the launch of his funding campaign Simon tells again how, for as long as he can, he will cling on to the life he has been given.
‘I want to live,’ he says. ‘Ruth and my five children are my life. I worry all the time about the effects of my MND on them... I don’t know the extent of the cost, I simply know it’s worth it. I’m in love with this life and it’s worth every hardship to me.’
Contributions to the campaign raising funds to help Simon direct his film can be made at indiegogo.com/projects/my-name-is-emily.
For further information about Simon and to view his previous work, visit mynameisemilythefilm.com


Read more: http://www.dailymail.co.uk/news/article-2494162/The-doctors-told-let-Simon-die-Instead-tried-baby--ended-twins--The-inspirational-film-maker-refused-accept-death-sentence-Motor-Neurone-Disease.html#ixzz2kXHdZRoQ

Brain-Computer Interfaces Unlock the World for People with Paralysis

Via http://alsn.mda.org/article/brain-computer-interfaces-unlock-world-people-paralysis

by Catherine G. Wolf, Ph.D. on Wed, 2013-11-06 09:35

 

The author, who has ALS, explains what's new in BCI technology

Brain-computer interface systems (BCIs) — all of which are still experimental and not yet commercially available — allow users who have lost the ability to move or communicate to do so by focusing attention on specific signals from a computer. The system then translates this attention into action, such as choosing a letter or word, controlling a thermostat, or moving a limb or wheelchair.

Article Highlights:

• Cathy Wolf of Katonah, N.Y., has had ALS for 18 years and has lost nearly all voluntary movement, including speaking ability.
• Wolf has been testing brain-computer interface (BCI) systems and assisting with their development since 2006.
• BCIs that are well along in development either sense brain activity through the scalp or through electrodes implanted into the motor cortex of the brain. They show promise in restoring a user's ability to communicate and perform various actions.

Brain-Computer Interfaces (BCIs) enable a person with no voluntary movement to communicate, surf the Web, write emails, and even move a wheelchair. For people with advanced ALS, spinal cord injuries, stroke or other neuromuscular conditions, BCIs promise to give them back the world.
There are no commercially available BCIs yet. But pilot studies in users’ homes are in progress to find out how to make these systems easy to use for both the user and the caregiver.

A user-interface expert

 

I have had ALS for 18 years. In that time, I’ve lost the ability to move my arms and legs, eat by mouth, speak and even breathe. I do have some movement in my face. But ALS is unpredictable. I might lose the small movement of my eyebrows and mouth in the next six months or the next year.

Wearing an electrode cap containing conductive gel in the electrode spaces, Cathy Wolf operates her computer by paying attention to single characters or function shortcuts on the monitor.

I have been participating in the Wadsworth Center’s development of BCIs since 2006 (the center is part of the New York State Department of Health). I serve as a user and also the user-interface expert because of my long history in human-computer interaction at the IBM Thomas J. Watson Research Center.

I am not yet dependent on the BCI. For now, I am using an infrared switch which I activate by raising my eyebrows to select letters and words from an onscreen scanning keyboard. This method is currently faster than the BCI. I participate in the research both for myself and others with movement disorders.

Wadsworth BCI picks up brain waves through the scalp

The Wadsworth BCI is based on electroencephalogram (EEG) signals picked up from the surface of my scalp. I wear an eight-channel electrode cap with electrode gel on my scalp. The signals are sent to an amplifier and then to a computer.

When I started my participation with the Wadsworth Center, the only application available was typing and then hearing back what I had typed in text-to-speech, the mechanical voice in which computers speak.

Since then, many improvements and applications have been added.

 

P300: The 'a-ha' response

 

On a large screen, I look at a matrix of quickly flashing letters and symbols that flash in a quasi-random, but known, order. My task is to count the number of times the symbol I want flashes. The computer is looking for a component of brain waves called P300. The P300 response is often called the “a-ha” response because it occurs about 300 milliseconds after someone sees something significant. The computer uses an algorithm to pick the symbol with the highest P300 amplitude.

 

Word prediction

 

One improvement in the Wadsworth BCI system is word prediction. Word prediction is based on the frequency of the next letter, given the preceding letter. For example, if I type “w,” the words “when, was, with, we, who” would be listed. If the desired word is on the list, I pick it, instead of typing the entire word. There is also next-word prediction based on the previous word. These changes increase speed and accuracy.

The Wadsworth researchers also experimented with different flashing patterns. One had seven different colors for the symbols in the matrix, and I was instructed to name the colors of the desired symbol. In an independent study with seven people who had ALS, the use of color seemed to increase accuracy.

Email

 

Another, and more important, BCI application was email. I can email anyone, and there is a feature for remembering recent email addresses. I often email members of the project with suggestions about the user interface, and other suggestions.

Rich site summaries

 

There is also a Web application based on RSS (rich site summary) feeds. I can read The New York Times, ALS news, and even listen to music on Pandora.com. There is a YouTube application in which you type a subject matter, like the Beatles or cats, and you get a list of YouTube videos on the subject. There’s also a picture viewer application.

My recommendation: Caregiver alerts

 

I noticed that when I am using BCI, my caregivers sometimes occupy themselves with other things. I suggested adding the ability to call my caregiver or announce a problem with the ventilator. These messages are repeated until someone comes to turn them off. The messages can be customized.

My recommendation: Adding mouse 'emulation'

 

For all the BCI-specific applications, there are always several that were not included. So at the Users’ Forum at the Fifth International Brain-Computer Interface Meeting in June 2013, in which I was a remote participant, I said my ideal BCI would work with any computer or Internet application, just as my scanning keyboard and switch can be used. This would require adding mouse emulation [imitation] to the Wadsworth BCI, but some BCIs already have the ability to move the mouse.

BCIs in the pipeline

 

At the same meeting, in the session called “BCIs for Users with Impairments,” a variety of modalities was presented:

• Auditory binary choice (two choices) BCI: The user is asked a yes/no question while in one ear “yes” is repeated and in the other ear “no” is repeated. Randomly, “yep” replaces “yes” and “nope” replaces “no.” The user answers the question by either counting the number of yeps or nopes.
• Visual binary choice BCI used with the eyes closed: The user is fitted with special glasses which contain LEDs flickering at different frequencies in each eye. The LEDs can be seen with the eyes closed. The user answers a yes/no question by attending to the appropriate eye.
• Visual BCI that uses eye blink in addition to EEG: Eye blink is detected by a different brain response.  

Although these were laboratory experiments, not for home use, I am sure the goal is to move them out of the lab. Thus, if you have movement disabilities, there is likely to be a BCI in the works that meets your personal needs!

The iBrain may monitor sleep but can't steal thoughts

 

Then there is the NeuroVigil’s iBrain, a one-channel dry electrode mounted on a headband that picks up EEG. The only application listed on the company’s website is in-home sleep monitoring, but the iBrain has been recently touted as “hacking” into the mind of Stephen Hawking and another person with ALS, Augie Nieto (co-chair of MDA’s ALS Division).

The iBrain was used to pick up brain waves when they thought of moving their left or right hands. Curious about the iBrain, I sent email twice to NeuroVigil. I got no response.

The word “hacking” connotes unauthorized access. When applied to the mind, it implies unauthorized access to one’s thoughts.

I don’t know whether the iBrain could function as a BCI. But I want to reassure everyone that the iBrain or any BCI cannot read your thoughts. BCIs require conscious effort to work. Counting how many times a symbol flashes is hard work. There is no way these systems could steal your thoughts.
As to whether the iBrain could function as a BCI, I suggest you wait for studies in peer-reviewed journals, and not be swayed by demonstrations.

BrainGate: An implanted BCI

 

Another approach to BCIs is illustrated by the BrainGate Neural Interface System. In such systems, explained neurologist Leigh Hochberg, a sensor is implanted on the surface of the motor cortex of the brain, in an area about 4 millimeters by 4 millimeters.

Once the sensor is implanted, the user imagines moving a limb, often the arm or hand. The sensor transmits the electrical signal to a decoder (one or more computers and software) that turns the brain signals into a useful form for an external device. The external device may be a computer with a cursor, a prosthetic device, a robotic arm or a device that controls the environment [such as the temperature in the room]. The recording is done intracranially [inside the skull] and is called electrocorticography (ECoG).

“My personal goal — shared by our BrainGate team — is to develop systems that provide a person with advanced ALS, or locked-in syndrome from brainstem stroke, or traumatic brain injury or other disorders, with 24-hour-a-day continuous point-and-click control over a computer cursor, enabling that person to communicate readily and to use any software on any computer that could be controlled with a point-and-click,” said Hochberg.

Implanted devices are potentially more natural for performing complex actions, especially when recording from several brain locations. One goal is to eventually use implanted intracranial devices like the BrainGate to bridge the nonfunctional motor neurons in people with conditions such as advanced ALS, brainstem stroke or spinal cord injuries, allowing them to move their own limbs.
The field is in its infancy, Hochberg noted. Still, there have been impressive advances. Three test users with quadriplegia were able to use the BrainGate to operate either a prosthetic arm or a three-dimensional robotic arm to reach and grasp. One tester used the BrainGate system for more than five years. After five years, the signals from the array were still useful to control external devices, though not as robust as the first year. This is significant because it shows that the BrainGate could provide use over a “clinically valuable time period,” Hochberg said.

Interestingly, implanted ECoG systems may make the noninvasive EEG systems more accurate. At the recent BCI meeting, a paper was presented about the successful use of ECoG to predict EEG in six people.

Although the goal of intracranial systems like the BrainGate is to seamlessly turn thoughts into movement, there is no danger that private thoughts could be stolen. Such systems reside in the motor cortex, not the area where complex thoughts and planning take place.

While some people may prefer the convenience of implanted systems, others are concerned about the risks.

Restoring abilities

 

The advances in both EEG and ECoG systems can now give people with no movement the ability to speak, the most human ability, and for me the most important.

Already, in pilot projects, they are enabling paralyzed people to use computers and control the environment. It is my hope that such systems will soon be available to all who need them.
For an in-depth look at the state of BCI science, see a summary of the Fifth International Brain Computer Interface Meeting sessions, with links to research articles.

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Cathy Wolf, 66, earned a doctorate in psychology from Brown University in Providence, R.I., after which she began work in the field of human-computer interaction. At the IBM Thomas J. Watson Research Center in Yorktown Heights, N.Y., she worked on speech and handwriting recognition and natural conversational interfaces, registering nearly a dozen patents.

In fall 1997, Wolf learned she had developed ALS. Since then, management of the disease has included a tracheostomy, a ventilator and a feeding tube. Unable to speak, Wolf communicates with her husband Joel and the rest of the world using a WiViK onscreen keyboard; E-triloquist speech program software; and a SCATIR switch that works through detection of a reflected beam of light and which she operates with her eyebrows.

In addition to writing for the MDA/ALS Newsmagazine and American Academy of Neurology’s magazine Neurology Now, Wolf is an amateur poet and has published two poems in peer-reviewed journals. She was profiled in the January 2007 issue of the MDA/ALS Newsmagazine.