AAC and Rett Syndome

Those of you who may not yet know of Carole Zangari's AMAZING blog, PrAACtical AAC, you are in for a fantastic treat. For any parent or teacher supporting a non-verbal child, Carole's blog is such a wealth of information!!! She has so much information there, it will take months for you to go through all of it.

Today, PrAACtical AAC is featuring an excellent guest post by Dr. Theresa Bartalotta. In this post, Dr. Bartalotta gives a concise, helpful overview of Rett syndrome and ways to support communication in children and adults with the disorder.

I appreciate how Dr. Bartalotta addresses the challenges our kids with Rett face as they relate to communication:

• physical limitations
• response time
• non-standard communications that can become highly meaningful

She also talks about particular AAC interventions that can be useful, including techniques, partner training, and low- and high-tech solutions that have been shown to be successful with some kids with Rett syndrome.

Those of you who know me well know that I take exception to the description of the Rett syndrome that assumes "most individuals are severely cognitively challenged" because we simply don't possess the tools to measure that. If you can't prove it, you can't presume it, right? Better to give the benefit of the doubt and provide rich opportunities, letting kids bloom to the greatest of their potential. That's my soapbox and I'm not stepping off, sorry.

For an introductory article on AAC and Rett syndrome, Dr. Bartalotta covers a lot of ground! If your child has Rett syndrome, it's worth passing on to your child's speech therapist.

Then, once you do that, go back and browse the PrAACtical AAC site. You'll be glad you did! Seriously, go check it out!

One Easy Way to Increase Vocabulary on AAC Devices

How do we add vocabulary when a child is physically limited to a few keys on a screen?

In the world of AAC, conflicts and compromises abound. We sacrifice battery life for weight, screen size for portability, budget for specialized access modes. We sacrifice the size of the vocabulary set for the number of buttons a child can access.

When children begin to use an AAC device, motor or cognitive challenges may limit them to just a few words on a screen. How in the world are we going to help them transition smoothly into a larger vocabulary accessed with more—and smaller—keys?

The secret is to use motor automaticity to our advantage.

Let’s step back and take a look a motor automaticity. Motor automaticity is the ability to carry out motor patterns without thinking about the movement. We all do this, all the time.

For example, walking is a skill many of us can do successfully without thinking about. Many of us can even complete other tasks at the same time as walking, such as talking to a friend, carrying objects, or looking for a misplaced coffee cup.

But someone recovering from a brain injury or stroke who has lost that motor automaticity must concentrate hard on the movements needed to walk. All their cognitive energy must focus on moving their legs correctly; carrying on a friendly conversation or looking out for that missing coffee mug is too demanding during the task of walking.

Another example of motor automaticity at work is touch typing. A typist can concentrate on forming words on the page without having to think about which finger to move to spell out the words. Remember this example; we’ll come back to it again.

When kids rely on AAC to communicate, motor automaticity allows them to access symbols on a screen without having to think about movement. This greatly enhances their rate of expression and makes conversation much more accurate and fluid. Kids can focus on the meaning of what they are trying to say rather than the motor mechanics of finding and targeting a symbol on the screen.

Without motor automaticity, locating a target and touching or eye-dwelling on it can be very demanding work. Communication is slow, exhausting, and creates a frustrating number of mis-hits.

We support motor automaticity by keeping buttons in the same location as much as possible. Just as we keep letter keys in a consistent arrangement on a QWERTY keyboard, symbols located in consistent arrangements are easier for kids to retrieve. They can find the symbols and letters they want easily, without having to scan through many keys.

To maximize motor automaticity...

Introduce screens with the end result in mind.

How many buttons on a page will a child be able to access in the future? No one has a crystal ball, so you’re just going to have to make an educated guess based on your child. With semantic compaction vocabulary sets, it’s hard to access a full vocabulary in less than 45 or 60 keys. Category-based pages might allow you to communicate with 30 to 42 keys on a screen, but fewer than that is going to mean a whole lot of tedious page flipping. The more buttons per screen, the fewer hits are needed, whether you are accessing words through categories or semantic compaction.

“But,” you say, “my child can only handle 8 buttons on a screen right now...”

You could offer eight buttons that fill the screen. However, what happens in the future when your child is ready to add more vocabulary? You would have to shrink the buttons and shake up their order to make room for more words or categories. Remember motor automaticity? Your child would have to learn their locations all over again. How discouraging is that?!

How naturally do these 8 buttons...

...become this? (Sono Lexis 9 x 6)
Not very!

Instead, take the screen that is your end goal and hide all buttons except the eight starter words/categories your child is using. He still has access to the same eight selections as the large keys filling the screen. Yes, these buttons will be smaller, but they are surrounded by plenty of null space that won’t activate if he hits it. You might be surprised how fast he can learn to target the smaller button size.

With this end goal in mind (Unity 45, full hit)...

...we start with these few word combinations.

When it is time to add vocabulary, you UN-hide hidden words or categories. They won’t change anything your child has committed to motor memory; they simply begin to fill in void space.

Child begins with these words and category...

...and ends with this 9 x 6 Sono Lexis display over time.

Remember learning to touch type in your keyboarding class? You started with the home row of keys:  asdf jkl;. It wasn’t much; you were limited to words like “fad,” “ask” and “lass.” But after a few days (weeks?), the teacher introduced “e” and “i,” and that opened up a huge new world of words! Now you had command of “alike” and “fleas” and “skidaddle!” The good news is that you didn’t have to relearn where the home row keys were located; they stayed consistent while new keys were added. Eventually, you mastered all 26 letters of the alphabet, along with some punctuation and formatting keys. That’s at least 40 keys...more for the kids who mastered the number row and got an A in typing.

This same concept is what I am asking you to try.

·        Start with the board set you think your child might be able to manage in a few years.

·        Select a few important buttons—the same ones you would have made up into a smaller set with large buttons.

·        Hide all the buttons around these select few.

·        Give your child time to learn to target these smallish buttons in the middle of large null spaces; it may take awhile, but trust that it will happen.

·        Then, when it is time to reveal a few more buttons, your child will be able to move forward with great confidence.

Want more information on hiding keys to support motor learning? Check out this comprehensive training material from Prentke Romich Company or sign up for one of their Language Acquisition through Motor Planning trainings. Although these are geared towards Unity's semantic compaction, the principles can be applied to most other language access software programs as well.

Why Parents Must Never Make Assumptions

When our kids are non-verbal and unable to ask questions, it is easy to forget how much—or how little—they understand what is being said around them. It’s so important we check with them about what they understand!

Sometimes they know more than we think.

My daughter and I were talking about a specialty medical appointment she had a couple weeks ago. She liked the doctor and laughed at his jokes, but she seemed distressed after the meeting.

The doctor had mentioned that we need to have her brain scanned to rule out the possibility that my daughter might have a brain tumor. Not surprisingly, this bit of information was upsetting to her.

I don’t think the doctor realized she knew about brain tumors. I didn’t imagine she would know much about them either, nor did I expect the possibility to come up during the appointment so I could prepare her. But it turns out that she does know that they can be very serious, and the idea she could have one frightened her. Who knows where she’s heard about brain tumors? Who knows what knowledge or misconceptions she might have about them?

We talked and I tried to reassure her; she seems to feel more relaxed about things now.

But her reaction was a good reminder to me that our kids just might understand things we don’t expect them too.

At the same time, gaps in our kids’ experience may limit the understanding they have. Remember that the inability to ask clarifying questions is a HUGE limit to experience, too.

This means we must explore misconceptions our kids might hold...even when they don’t have the ability to put these misunderstandings or questions into words.

This is tricky, both for parents and professionals. We have to explain so that a child’s understanding is accurate and complete, yet without belittling what information the child may already have. It’s a delicate balance.

It isn’t like we can say “Tell me what you know about _____,” as we might with verbal children, when our kids have little or no expressive language. This is equally difficult if their ability to express themselves is limited to the choices we offer as “expression.” In fact, offering choices might actually add to their confusion and misconceptions.

So what can we do to promote understanding and expression?

Here’s what I can come up with; I’d love for you to add on your thoughts in the comments:

1. Presume your child may know more than you think. Many kids are sponges, picking up information from all around them. They hear things at school, on television, in stories...and you can’t be everywhere they’ve been to know what they’ve heard in these places. They may know just enough to have lots of questions and fears.

2. Add background knowledge. Sure, your child may have been exposed to an idea, but we don’t know if their understanding is complete. If they can’t ask questions, we need to provide answers to those questions they can’t articulate.

3. Keep information appropriate to your child’s level of understanding. When in doubt, consider what their age-mates would want to know and keep your information geared to that level.

4. Be truthful about your own fears. Can you imagine how lonely it would be to think you are the only person in the world experiencing a particular fear? By letting our kids know that we are afraid—but will be strong for them—then they know they aren’t alone.

5. Revisit sensitive topics. Sometimes more questions come up in time. We don’t have to beat an idea to death, but it’s good to ask our kids if they have any new questions or fears. I plan to go over the new concerns my daughter may develop as the date for her brain scan gets closer.

Do you agree that it is important for other adults in our kids' lives to refrain from making assumptions about what and how much our children understand? We (and I speak in the inclusive "we," meaning educational and medical professionals as well as parents) are in a position to educate them by example.

Thanks for reading, and thanks for your prayers for my daughter’s health. Not only do I look forward to health improvements for her sake, but also so I can get back to blogging more often. I really miss spending time with you here.

--Rose-Marie

Awesome AAC Conference with Cathy Binger

You lucky folks in the Pacific Northwest (USA) have an opportunity to hear Cathy Binger present an incredible conference on October 22, 2011 in Bellevue, Washington. She’ll be speaking on Practical Language-Based Solutions for Children who Need AAC:  Fostering Expressive Language and Communication Skill. This promises to be a practical and informative day that you won’t want to miss.

From the flyer:

“This workshop is designed to help you identify solutions that will alleviate communication frustrations and create improvements in basic language and broader communication skills for children who need AAC. In addition to exploring techniques you can use to reach this goal, techniques that can be used to teach colleagues and family members how to implement basic AAC solutions also will be discussed. Case study videos will be used throughout the workshop, and relevant findings from Dr. Binger’s intervention and partner instruction research will be discussed.” 

Dr. Binger is highly regarded in the AAC community. She teaches graduate classes at both the University of New Mexico and the University of Wyoming. I love her book Building Communication Competence with Individuals who Use AAC and guard it with my life. Can I tell you just how excited I am to get to hear her speak? Please join me—this is going to be a fantastic workshop!

The Northwest Augmentative Communication Society is well-known for the outstanding conferences they sponsor each year and Dr. Binger’s workshop promises to be well worth your time.

You can still catch the early bird registration fee of $85 if your registration is postmarked by October 15; after that date, it goes up to $115. Lunch (and fun lunchtime conversation with local SLPs, teachers, and parents) is included. 

You can find the complete flyer and registration form at the NWACS website.  I hope to see you there!

A quick alternative to laminating symbols

Does the time and cost involved with laminating symbols get to be a little much sometimes? Of course we accept the hassle and expense of laminating symbols that receive ongoing use. But what about those symbols or pictures used to meet a short-term need? Do they merit the investment? Why waste lamination film if they are simply going to be thrown away?

A couple weeks ago, a friend and I were chatting about solutions to this problem. She had materials for her child that would be used on a short-term basis, to accompany reading lessons that would last about one week. The extra work, expense, and waste of laminating them seemed pointless. 

This is where vinyl name badge holders can come to the rescue! Avery makes some great ones that we’ve used, although there are other brands. Just slip the paper symbol or picture into the pocket of the badge holder and you’ve got a sturdy, drool- liquid-resistant card for eye gaze or touch. When you are finished with the symbol, just swap it out for a new one and use the pockets over and over.

Vinyl badge holders with computer-generated words
and 2" picture symbols.

Some badge holders even come with “zippers” to increase their resistance to moisture (see these).

I won’t pretend that these vinyl pockets are cheap; they can run anywhere from $0.35 (in bulk) to $0.85 per pocket. Thirty-five to 85 cents of lamination film can protect quite a few 2 x 2” symbols. But the horizontal pockets we use have lasted for years and have saved me hours of laminating time. I’d say they’ve paid for themselves.

At Walmart yesterday, I found a package of 12 generic badge holders for $1.88. That’s just over $0.15 a piece. They are considerably flimsier than the Avery brand, so I can’t recommend them for extended use or for kids who are rough on materials. This is a case of “you get what you pay for.”

Badge holders also readily accept adhesive Velcro for use on choice boards.

There you go! If you find yourself in need of a way to protect symbols or pictures for a short time, try the badge holders.

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On a personal note, thanks so much for your patience with the long silences here at Adapting Creatively. We’ve been dealing with some health issues at our house that take away time from blogging.  Hopefully things will settle soon and I’ll be able to get back into a routine. Thanks for understanding!

--Rose-Marie

What can kids say with wipe-off eye gaze cards?

LOTS!

Handy wipe-off word cards that we used to answer a homework assignment

For kids who read, whether proficiently or as fledgling readers, printed choices can be quick and efficient for indicating  thoughts. We tried dry erase boards for years, writing choices in the corners, with marginal success. For our daughter, the ability to adjust the spacing of cards within her field of view can be critical. This is especially true on those “off” days when she isn’t feeling her best.

Index cards are an option that let us space her choices to meet her needs of the day, but the cost of using them adds up quickly.

Over the summer, I tried laminating 3.25 x 5.25 cards cut from oaktag file folders. These have worked GREAT! We simply write choices on the cards with a dry erase marker as they are needed and wipe them clean with a dry cloth when we’re done.

Handwriting the words or phrases is so much faster than trying to locate symbol cards in a notebook and re-file them after we’re finished. Also, many of the words my daughter needs have no symbol counterpart.

Some speech therapists recommend using black dry erase boards for certain students, as they may be easier on the eyes. If this is true for your child, try laminating cards cut from black construction paper or heavy scrap book paper.

Our laminator is made by Purple Cows and the small hot pockets work especially well for this project. The laminated cards wipe clean and are holding up beautifully. I have a dozen of them at the ready, which allows me to have a nice stack of choices. I can also have answers ready several questions ahead if she is completing a homework assignment.

If your child is able to read at all, I suggest giving these laminated blank cards a try. You might find them to be a quick solution to the time-consuming problem of symbol storage and retrieval.

AAC Evaluations: Resources to Help You Get Yours Right

There has been much discussion – and grave concern – lately on several online parent lists about AAC evaluations for non-verbal children. Families are asking where they can learn more about the process to make sure evaluations are conducted appropriately.

After all, the stakes are enormous.

Communication is fundamental to the very core of who we are.

Sometimes this basic concept gets buried under all the data collection that is mandated from speech therapists. And sometimes families forget that communication is more than just simplifying life for the caregiver.

An AAC evaluation is a subset of a larger Assistive Technology (AT) evaluation. Because communication is such a critical component impacting every aspect of life and learning, AAC evaluations often become an entity all their own. The rest of the child’s assistive technology needs cannot be ignored, but AAC decisions are so huge, and often so costly, that they are given special separate emphasis.

AAC evaluations need to look at the whole child, not just the tools of expression. Notice I said “tools,” plural, with an S. Notice I also did not say “only a high-tech device.”

There is a trend right now to assume that a single high-tech tool fits all. Don’t get me wrong; this iTool is great and may be able to benefit many, many kids...but that does not mean it is a great tool for every kid.

Families, just because a sleek, new, high-tech iDevice is “cool” does not make it the right fit for every child.

Schools, just because this iDevice is relatively inexpensive does not mean that is the right device for every child either.

Just because a school is comfortable with a specific method (PECS  or PODD or name-your-favorite) or device (one brand, one language access software) does not make it the right fit for every  child.

An AAC evaluation determines the needs of a specific child in the specific environments where he interacts and, from that, matches him with the tool(s) that best meet(s) those needs. Well, that is the method of an AAC evaluation done correctly.

AACTechConnect hosts a list of outstanding resources for AAC evaluations available on the Web. I want to highlight three free resources that are essentials for families. They are also essentials for speech therapists and AT teams...lest we forget the fundamentals of our service.

1. The SETTframework drives home the concept that we look first at the whole Student and their Environment as we consider the Tools that enable them to meet the Tasks expected of them. The rationale for the SETT framework and SETT forms are available through this page. The SETT framework directly addresses some of the problems I mentioned earlier about jumping to conclusions about the benefit of a one-size-fits-all tool.

2.  Wisconsin Assistive Technology Initiative’s Assessing Student Needs for AssistiveTechnology was updated in 2009. At 525 pages, you may not want to read the entire document, although it is excellent! Two outstanding and relevant chapters, both packed with rationale and many useful forms, are Chapter 1 (Assistive Technology Assessment) and Chapter 3 (Assistive Technology for Communication). This is a fantastic resource you don't want to miss!

3. The University ofWashington's site is different from the others in that it doesn’t offer forms or checklists. What it offers is a good discussion on the different levels of communication and ways to help children and adults succeed at each level and progress to the next. It also provides an excellent “crash course” in the basic features of AAC devices that need to be considered. This helps clarify some of the technical jargon in the forms you may find elsewhere.

If you have an AT or AAC evaluation in your near future, take a look at all three resources.

Consider filling out some of these forms yourself based on your observations of your child interacting at home. Share your observations with the school team.

Your home is an environment where your child must be able to interact. Your observations of the needs she has there and how a trial device meets those needs should be considered in an AAC evaluation.

The better we understand the whole child, the better we will be able to match the tools to meet her communication needs. May every child have a way to express him or herself.

The Role of "Yes"

If you interview 1000 parents of typically developing kids, 999 will say that their children learned the word “NO” before they learned the word “YES” (Anyone have the real statistic? I made up numbers to make a point, but then I have editorial privilege here). Because this is the typical pattern for learning these two words, I have long advocated that we teach these words in the developmental order of NO first, followed by YES. You can read about that here.

I still maintain that this is true. However, there is some interesting discussion going on in the AAC circles about this order right now.

Pati King-DeBaun, whom I greatly admire, is a long-time authority and advocate for children with severe communication needs. She posted an interesting discussion on her blog about “yes” on its own. You will find it here.

What Pati says is that acknowledging a child’s “yes” response gives them the ability to communicate through partner-assisted scanning. If you aren’t familiar with this communication procedure, it means that a partner lists off choices for the speaker, whether verbally or with symbolic choices (pictures, line drawings, or objects) or both. The partner indicates when the item of preference is offered. PODD, or Pragmatic Organization Dynamic Display, typically uses partner-assisted scanning.

Traditionally, we have asked kids during partner-assisted-scanning to tell us “no” for each of the non-preferred items and stop us with a “yes” (as in, “That’s it!”) when we reach the item of choice.

But Pati says “yes” alone will give the kids the ability to use partner-assisted scanning. She suggests kids don’t even need a “no” response to be able to successfully communicate using this system.

Does this conflict with my opening statements about teaching the word NO before the word YES? I say not. They are compatible practices and here’s why.

Pati is acknowledging the child's signal of affirmation of desire. This is innate in infants; just watch them. When baby sees Mama rustling up the ingredients to make up a bottle, he starts squiggling with anticipation. At another time, he reaches and kicks his feet when Daddy holds up a favorite toy. This occurs long before the child is developmentally ready to begin conventional word use.

This same baby will likely not respond when Mama gets out the cat food and can opener to feed Kitty. He has no interest. He does not yet pay attention when Daddy picks up the newspaper (give him a few months and that will change!).

These are the same innate reactions Pati talks about in her blog post. If we observe our kids, they have signals to affirm their desire for something. By ignoring what they don’t want, they are withholding affirmation and that is adequate for us to know they don’t desire it.

I really appreciate Pati’s thinking for several reasons:

            1) It allows children to communicate successfully before they have two consistent responses. All they need is an affirmation response. It is our job to observe what that response is. For kids with strong motor challenges, this need for a single resonse is such a gift.

            2) It saves a great deal of physical energy, since the child only needs to respond once out of all the choices offered. It also speeds the rate of communication…a LOT! Again, what a benefit to kids with motor planning issues.

            3) Developmentally, this is consistent with the ability to affirm desire before the acquisition of words (or, for non-verbal students, symbolic expression, including sign, picture symbols, etc). How wonderful that it allows kids to communicate before they are ready to leap into more complex developmental stages!

Now, all that said, I still maintain that when teaching the words yes/no expressively¸ “no” is most easily learned first. This is because word acquisition typically develops at the same time that autonomy rears its little developmental head. “No,” as a means of rejecting, is concrete and easily grasped and gives Little Miss Autonomous a way to voice her new interest. “Yes,” on the other hand, often represents more abstract concepts, such as things that are intangible (feelings, for example), future events, or simply agreeing with that Mother-Who-Threatens-My-Autonomy. And what toddler would want to agree with that awful lady?

For all the good things that acknowledging the affirmation of desire signal alone can do to help kids communicate through partner-assisted scanning, I am so grateful Pati opened up this discussion!

What do you think about this? Does signalling an affirmation of desire without a corresponding “no” work?

And if you haven’t read Pati’s post yet, please do. It gives us important things to think about.

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You might also be interested in reading "Yes, No, Maybe so..." 

Eye Gaze Technology in AAC—Time for a Trial!

So now you have one of these amazing high-tech eye gaze devices in your hot little hands and 2-4 weeks to see if it’s a good fit for your child…now what?

During the trial, you want to set your student up for success. Remember, this is all brand new to her and eye gaze is very, very fatiguing while the eye and neck muscles build up strength. Your goals here are to see which device she is most successful in accessing, and to determine which language access method she prefers. It's really two separate goals rolled into one during the trial period.

CALIBRATING the device:

The device needs to be appropriately calibrated before you can assess how well your student can access the machine. Calibrating allows the device to recognize the nuances of a person’s eyes and eye movements.

Positioning is critical. Each device has specific preferences for placement, both its distance from the user, the height, and the angle. The User Guide and company representative for each device will lead you through these set-ups, but don’t hesitate to customize if you find positioning that is more successful. If your child tilts her head, be sure to adjust the machine to accommodate this.

For keeping her attention during the calibration exercises, you want something that is going to really catch her eye and her motivation. If she has a favorite cartoon character or singer or her own picture, you can incorporate those to make the trial time fun. Dynavox and Tobii allow you to bring in your own pictures for calibrating so that it becomes a game ("Follow SpongeBob with your eyes" is MUCH more fun than "follow the dot"). I don’t recall if PRC’s ECOPoint permits this or not…anyone?

If you have difficulty getting the machine calibrated to your student’s eyes, you can vary the parameters. Maybe a shorter session with fewer calibration points would hold her attention better. You may be able to step through the calibration manually with a keyboard, concentrating on the time she is focused on a calibration point rather than expecting her to follow the points as they move around the screen.

If all else fails, calibrate the device to someone else’s eyes. I’ve heard recommendations for having a parent or sibling calibrate, since the structure of the eyes is likely to be more similar than that of a non-family member.

TWEAKING for accuracy:

Change dwell time, button highlight, the transparency of the tracking “dot” or timer, and the visibility of cursor. Tracking training activities are very helpful in setting these for increased accuracy.

You can also change button sizes and colors and the page’s background.

Place buttons horizontally for more accurate hits. While it is important to explore the full screen to show you what potential the device has for access, for justification purposes, you might organize her choice buttons in a straight horizontal row rather than a 4-button grid, because horizontal eye movements are easier to master than vertical ones. I extend thanks to Judy LaRiviere at the Oakland Katie’s Clinic for this reminder.

Each device we trialed came loaded with fun activities created to develop eye gaze control, and these are effective for fine-tuning dwell features as well. These vary from one manufacturer to another, but they are all very helpful.

They all have a variation of a target practice activity, where the eyes chase a character around the screen. These can be highly motivating for a few tries (imagine being successful right off the bat when your whole life has been a series of discouraging attempts at things you can't do), and they teach YOU, the adult, a lot about ease or difficulty of accessing specific areas of the screen, as well as the button size that can work for your student. I recommend swapping out the built-in character for one you know to be motivating if that is possible with the software on the device.

PRACTICE activities:

Before you expect accurate responses from a child, he will need time to explore the device. I cannot stress this highly enough. Check out this post on a child’s needs for exploration. He needs to have had time to process the types and locations of choices before you can reasonably expect her to use them functionally.

In addition to undirected exploration, you will want to set up activities that are errorless. These are still learning activities and this is NOT a time for “testing!” Activities where your student directs action are a good thing for this. He might direct a bubble-blowing activity or a game like Simon Says or Red Light, Green Light. He might love books and prefer to comment and direct you to turn the page. He might enjoy exploring a tiny library of music clips. He may enjoy leafing through photographs of family and friends or enjoy activating video clips.

And don’t forget those target-practice activities you used to tweak the dwell features!

Also, most of the devices have a puzzle activity where you click to hide each key, unveiling a photo. If you swap out the original photo with one that has personal meaning to your student, this is a highly motivating game.

When you want him to practice indicating choices in a more directed activity, pull in those pictures of characters that he enjoys. "Where is Lightning McQueen?" is much more motivating than "Where is the fork?" Or try photos of family and friends.

Try to involve as many senses and motivational angles as you can. If music is motivating, set each key to play favorite music clip activated. He may enjoy sound clips of favorite people talking or of goofy sound effects. Maybe he would be highly motivated by video clips…your imagination is the limit.

Creating choice screens also gives you a feel for programming each device. Obviously, your ease of programming shouldn't impact the decision, but you will learn a LOT about how the machines function. You might start with just two choices per screen, then 4...simple is key for this.

Whatever activities you design, make them simple so you can duplicate them on each device. Unfortunately (or fortunately, since it teaches you the machines best), you can't transfer files between machines but must make the activities from scratch for each. That's why I recommend simple activities. What this does is let you see how each device handles the same expectations.

 OBSERVE LANGUAGE PREFERENCES:

I can't stress enough the importance of letting kids explore without pressure. This is especially true when it comes to navigating around the communication software to access language. Kids learn so much just by "playing around” without us talking or asking questions of them. As standby observers, we learn incredible amounts about their learning style and can probably determine just by watching them explore which of the language access methods is apt to fit each girl best.

Try to provide as much time during the trial for exploration of the device as possible. The quality of this extended time exploring the language access software is critical—the trial period is NOT the time to impose "interpretation" on those explorations. This gives a neutral environment--non-judgmental, not resulting in an outcome--for developing both motor skills and discovery of the meaning (especially since so many symbol keys are labeled with a single word yet will type/speak a phrase). We can learn so much from those explorations just from quiet observation (as opposed to interaction), noting which symbols get chosen repeatedly, what areas of the screen the child prefers, whether she explored alternate routes to the same content of a message (i.e.: the verb "drink," adjective "thirsty," and noun "juice" are all different ways to express desire for some juice to drink but, depending on the symbol set, may take VERY different routes to get to the message), how she figures out navigation strategies, etc. I don't want to call those "prerequisites" to communication, since communication has none, but they absolutely contribute the accuracy of an intended message.

For the purpose of funding justification, it is absolutely fine (perhaps best) to design a simple page that allows for a successful structured conversation, rather than relying on the built-in language access system.

However, you still need to observe how your student does during extended periods of exploring with the various language access software programs. There may be one she is far more highly motivated to "play with" than others, that holds her attention much longer. There may be one that inspires her to compose meaningful telegraphic statements with during her exploration (remember, we still aren't inserting ourselves yet!). Or she may gravitate to the full phrases or the keyboard…

Later, after the device has been purchased, the child will still require extended time to explore language access software. As the child begins to demonstrate the ability to activate keys with greater intention, there also comes a shift when we move from quietly observing in the background to engaging in conversation. At this point, key activations are credited as deliberate attempts at communication. This is when we move from fun, errorless exploration and activities to place where language takes on the power to make things happen.

So to summarize, the trial period is a time to find out which device the child demonstrates best access and for you to observe which language access system is a good fit. One may leap out as being a “best fit.” There may be another she doesn't even like--her body language and lack of attention will tell you. 

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Other posts that might be useful:

Eye Gaze Technology for AAC:  Looking at the hardware

Eye Gaze Technology for AAC:  Language access software

Eye Gaze Technology: Language access software

Language access software—now that is a very exciting topic! Seriously, it truly is…and I hope you get as excited about it as I do.

Once kids are able to access a computer through eye gaze, what is it they are going to say? How are they going to say it? THAT is what the language access software is all about, and it plays a HUGE role in successful communication.

Little nuances in fit make all the difference in comfort,
even within the same size!

Getting a good fit between child and language access can’t be stressed enough. It’s like fitting a shoe…even within the correct size, there are nuances to the fit of a shoe that make it successfully comfortable…or irritatingly painful. It’s got to fit right or it just plain isn’t a good match.

The key to selecting the appropriate software is your student—her learning and internal organizational style, what she wants to say, how complex her communication abilities are (or have the potential to be), even what level you hope her to achieve 20 years from now since what she does today can help lay the foundation.

Another consideration is how many hits it takes to create the message she wants, because even eye gaze is very fatiguing. And we know with Rett syndrome or any other disorder involving severe apraxia, motor planning of any kind is extremely exhausting.

Last week we talked about the devices made by Dynavox, Tobii, and Prentke-Romich. All three manufacturers use programs with different methods of organizing language and retrieving vocabulary. While there is a learning curve with each system, it could be that the language organization on one clearly stands out during the trial period as a better fit for your student.

In addition to the software packages traditionally associated with these devices, there are third-party packages that can be installed on most any of them. These open up even more options to the user, but I’m going to stick to the programs typically used by each of the manufacturers to simplify the discussion. The same evaluation principles apply when looking at third party software, such as WordPower or Picture WordPower or PODD.

So that leads us to language organization. I apologize in advance if I'm covering what you already know; I've learned it's best not to make assumptions (sheepish grin).

Language is stored as letters, words, or phrases.

1) When it is stored as letters, we have an onscreen keyboard, typically with each letter taking a single hit to spell out a word. The number of hits to create a message depends on word and message length.

The benefit of spelling is that it allows an infinite number of novel messages. There are also word prediction and abbreviation expansion options that can cut down keystrokes.

But even with these options, the high number of hits to spell is fatiguing. Spelling also tends to be frustratingly s-l-o-w with eye gaze, so that back-and-forth conversation requires excruciating patience.

2) When language is stored as words, it allows for as much novel message creation as most of us are likely to use in a lifetime, although unique words will have to be added.

Words can be accessed through one-key hits or through key combinations.

Creating complete sentences is still slow, but doable. Most AAC users who opt for words have very "telegraphic speech."  That is, they might say "cookie" "please" instead of "Will you please get me a cookie?" After all, the motor demands make words expensive in energy output. Kids can still be very effective in communicating a message that way, though.

Usually a person needs more vocabulary than can be stored on a single page. So pages are created to categorize the words. This is the most familiar language organization strategy.

For example, to reach the word "zebra," you might need to navigate from Nouns (or Things) > Animals  >  Zoo  >  more Zoo words > zebra, taking 5 hits to access the word “zebra.” Sometimes going through the organizational tree can take more hits than just typing out the spelling, unfortunately.

A challenge with this system is that memorizing the placement of the buttons can be very difficult. Each page offers a new array of buttons that must be visually scanned, which can be a tricky task for eye gazers, since eye movements are being tracked by the computer. The programmer must work hard to maintain consistent placement of buttons to support motor automaticity.

Let’s talk for a minute about motor automaticity and why it is essential for eye gaze users.

Motor automaticity is when your body moves the way you want without you having to think about it. It is the skill that lets you reach the stick shift or turn signal lever in your car without having to look. Touch typists use this skill as they fly over the keyboard, hitting all the right letters without peeking.

Your body knows where the shifter or turn lever or computer keys will be through repeated practice. Touching these things becomes automatic; you don’t have to look or even think about it. They are always located where your body expects them to be.

People who use eye gaze can—and should—develop motor automaticity with their eye movements. Their eyes come to expect certain keys to appear in the same position each time.

By contrast, scanning with the eyes can cause unintentional mis-hits when a child’s eyes dwell a little too long during the scanning process. The sooner a child can learn motor automaticity, the more accurate his communication becomes.

Single words can also be retrieved through a process called “semantic compaction,” which aids motor automaticity. Each stationary key represents a concept, and the concepts are combined to create a single word. For example, if you hit "apple," which represents food, and "verb," you get the word "eat." Similarly, "apple" + "feelings" = "hungry." A large vocabulary can be accessed in 2-3 hits. The keys are static and their layout can be committed to motor memory.

Semantic compaction tends to require more learning for the adults supporting a child than for the child herself. I'll share my bias--I was highly skeptical at first but forced myself to learn the system and found it to be VERY slick! I'm a believer now. Several summers ago, I had the opportunity to meet an amazing woman with severe CP who can speak at normal conversational rates using a head mouse with this system. Impressive, let me tell you.

3) A third system of vocabulary organization is phrase-based. In this, a person navigates to categories for various situations and hits a key to activate a pre-programmed phrase. This can make for fast conversation, but the person is limited to saying only what is programmed on the device. 

Imagine going up to a friend. In one hit, you can ask "How are things going at work?" That's quick access! And sometimes, it meets your needs well. 

But imagine this friend has just lost his job... Suddenly, "How are things going at work?" is completely inappropriate. The likelihood that "Sorry to hear about your job situation" is programmed onto the device is pretty slim.

To address this problem, some programs include partial phrases, like sentence starters, or “slot fillers” (fill in the blank). Some are more elegant in their capabilities to do this than others.

The software programs on each of the devices combine options of choosing from letters, words, and phrases, which is a GOOD thing. No one wants to be stuck with just the phrases someone else decides are important! All three include some keyboard for spelling, so I won't mention that again.


Dynavox’s Vmax runs Windows 7 and uses InterAACt. This is a dynamic (meaning "changing" in this context, as opposed to static or stationary) page-based system for organizing single words and phrases. With it, you start with a page of broad categories and narrow down to smaller categories until you find the page with your word/phrase.

A plus to this is that it makes sense to the staff that programs the device. As an aside, the version of InterAACt I used six month ago desperately needed its programming design updated...taking many steps that should have been automated by now. It is possible that the newest version, 1.07, may have some improvements since that time.

Another plus to InterACCt is that it can hold a nearly infinite number of topic pages, which is nice for school.

The downside for the user is that chances for motor automaticity are very small--every page looks different. And every time a new vocabulary word is added, the page changes.

I find that it really doesn't lend itself to composing sentences--too many hits. For single words, it can be okay though. And for phrase-based conversation that will not change often, it works well.


PRC devices run Windows XP and use Unity, which is based on semantic compaction. The core vocabulary is offered in several sizes, with each supporting motor automaticity and few hits to access a huge vocabulary.

It also incorporates a dynamic activity row which changes automatically with the categories as they are selected, including phrase-based conversations. From the "apple" key from the earlier example is hit, the activity row will show food-specific words that would be cumbersome to memorize with key combinations.

It also has sets of pages of one-hit topic vocabulary that can be built for school subjects.

I find Unity easy and quick to program, although you have to fully understand the language structure to locate new vocabulary wisely…or you can foul up the logic if you program into the Core set poorly.

On the downside, the software is less elegant for creating things like quizzes for class. The key sizes are pre-defined and sometimes you would like to have creative license on that.

The other drawback is that staffs tend to perceive Unity as being overwhelming to learn, which is unnecessary, but sadly often the case. PRC in our area offers excellent training that can help overcome that fear. The kids tend to look at it like a super-cool secret code, so I have yet to meet a child resistant to learning it.


Tobii C-12 uses Windows Vista and uses Communicator 4 as a base set. It functions much like InterAACt but with state-of-the-art programming.

Equally important, they have an add-on package (included as part of the device purchase) called Sono Lexis that combines some of the best of the other two navigation systems.

It has rows of one-hit high-frequency core words (such as I, you, want, like, not) that are always accessible. There are stationary category keys that open additional rows of vocabulary above these core rows. It also has a category for phrases.

It provides more motor automaticity than Dynavox's InterAACt but less than Unity on the PRC devices. It's pretty well thought-out, fairly customizable (and I have requests in to the company for features that would make is moreso), and easily programmed.

You can step outside of Sono Lexis to make pages that look however you want, which is nice for classroom activities.

To be honest, I wasn't in love with Sono Lexis at first but the more I play with it, the more smitten I become.

The major complaints I have are that I'd like to be able to customize the core vocabulary and to solve the problem of arranging new vocabulary added to the category rows so that it is logically organized (alphabetizing isn't always the most logical, and inserting a new word in ABC order throws off the motor memory). I’d also love to see a “replace all” feature, but then I want it all!

The new Tobii C-15 will run Windows 7 and the Communicator 4/Sono products.

 

There you have the basic run-down on the Major Three software programs for language access. Each has strengths and areas that could be improved. They all can be simplified for children who need to start at a basic level. But it is important for you to look at the capabilities of each to get a feel for what each can offer at higher levels.

Any comments you might make on these systems to help others?

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Here are some additional posts you might find helpful:

Eye Gaze Technology:  Looking at the hardware

Eye Gaze Technology:  Time for a trial!