Tuesday, December 13, 2016

720 Hours

Did you know that the Foreign Service Institute says that for an adult who is fluent and literate in English to learn a foreign language with a different alphabetic system to a basic communication level takes at least 720 hours?

Yet we ask children who may not have reading ability and who possibly have difficulties with receptive language to prove progress towards master of a language system with as little as one hour a week of language therapy.

Even if they were adults with full receptive language, a lifetime of experience in the world and average cognitive abilities AND they spent ALL 30 hours a week at school fully engaged in AAC learning (including during transitions, meals and hygiene activities) it would take approximately six months to get to basic communication mastery.

What does this tell us? It tell us we must immerse children in their AAC system every waking moment. It means we must allow for slow progress over long periods of time without giving up. It means we must teach language, AAC, literacy and cognitive skills simultaneously. It means we do not have time to waste on things like watching movies at school or playing bingo for the five millionth time unless we have made these activities into immersive and instructive language experiences. We also don't have time to waste on supposed "pre-requisites". It means that snack, lunch, recess, PT/OT, "life skills" and hygiene cannot be breaks from learning AAC - they must be part of learning AAC.

It means it is on us to get to 720 hours of AAC immersion and intervention.

It's the most important job we have.

Friday, August 12, 2016

In the world of AAC it matters little what church you belong to, as long as you believe!

I spent the past week at the International Society for Augmentative and Alternative Communication Biannual Conference, held this year in Toronto, Canada. I learned a lot and enjoyed my time meeting people I had only known online before then.  

By the second day of the conference I realized that I might need to repost a slightly revised version of this post from four years ago at ISAAC in Pittsburg. 

At ISAAC Pittsburg I started joking that we all needed color coded dots on our name tags as shorthand to tell others which "church" of AAC we have joined.

What I mean is that people who believe dogmatically in a certain system of AAC (or device or symbols) to the exclusion of others and are such fervent believers that they appear to belong to a sect or a very demanding church.  Some people needed green dot because of their belief in Visual Scene Displays while others needed a red dot because of their belief in PODD (Pragmatic Organization for Dynamic Display).  Still others needed other color dots for MinSpeak/UnityWordPower, and Bliss Symbolics.  Of course there were also people who needed some identification to show that it was a specific hardware or system they followed, the PRC people (and correspondingly MinSpeak/Unity/LAMP), the Dynavox folks, etc.  And then there where those who needed some kind of mark to show they followed a personality more so than anything else.

There is nothing wrong with believing strongly in any of these "churches" of thought in AAC.  All these people and the people behind all of these systems are trying to do good.  They believe in the power of augmentative and alternative communication. 

The problem seems to come when followers of any of these believe in them so ardently that they cannot allow for the fact that there are other ways of doing things.  The problem increases when we in the field push one means or method of AAC over another merely because it is what we know well, it is the church we belong to, at the exclusion of systems or supports that may be more suited to the situation at hand.  Additionally, proselytizing our own churches of AAC to parents and future AAC users can give the false impression that the system, symbols or device are more important than how we implement it.

Families and future AAC users are frequently lead to believe that if we just, "get it right" with the selection of a system, device or symbols then communication will happen, like magic.  This isn't true.  Learning to be an efficient and functional AAC user takes years and years of instruction and hard work.  Professionals bemoan families who will not use AAC systems or devices at home, but we don't spend much time looking at how our actions created this reality.  We, usually without meaning to, create the idea that getting the system is the cure, then we fail to follow best practice in implementation.  Truthfully, communication success with AAC depends much more on implementation than anything else, on how we teach and present AAC.

If we moved our focus from our "churches" to how we implement AAC, no matter which system, device or symbols, we would see more competent communication users and less abandoned devices. 

Some suggestions:

Before anything else, in the absence of other evidence we must 
 Presume Competence! And even in the face of what we believe to be evidence we must Presume Potential! There is no such thing as "too low to communicate". And you must have words to prove you can use words. 

Here are some of the things we can all do regardless of which system we are implementing: 

  • Create a language rich environment - label everything, with descriptive labels, not just with the symbol for the thing but also with core vocabulary, so instead of the symbol for "light switch" by the light switch but a sentence strip of "Turn light on" over the switch and "Turn light off" under the switch.  Then model by pointing to each word on the label, and if possible in the communication system, EVERY time you use it.  Use visual schedules.  Model, model, model these adaptations ALL THE TIME.

  • Train all those who work with students who use AAC, including professionals outside special education and speech such as PT and OT as well as parents, siblings and peers in implementation techniques

  • Use more symbols not less, assuming you should "start small" seems obvious, but with only 4, 6, 8 or 10 symbols there is not much to say and little to model.  Start with a larger vocabulary for best results.  Visual Scene Displays may be a transitional tool in children under 18 months but we all eventually need words. 

  • Aided Language Stimulation is a must - all those involved in implementation MUST consistently and constantly model the use of the communication system (no matter which communication system)
    • you can do this by using the student's device yourself and having others use it
    • you can do this with wall charts 
    • you can do this with another system or device for the adult to use to model
    • you can do this with a printed version of a higher-tech system
    • you can do this with an ELMO camera placed over a low or high tech device
    • you can do this in so many other ways, your imagination is the only limit
    • using Aided Language Stimulation will slow the teacher/therapist/communication partner down, increasing time for verbal processing
    • think of Aided Language Stimulation as "Immersion", everyone agrees that immersion is the best way to learn a foreign language, creating an immersion environment for AAC is also the best way to learn Augmented Communication
  • Zip your lips and wait.  Nothing is more important than quieting yourself and allowing an AAC user to listen, think, form a message and respond.  I will say it again, ZIP your lips and WAIT!
  • Use the "expectant pause" during conversations, when it is the AAC users turn to participate, learn forward, keep your eyes kindly on the user, look ready but patient and BE QUIET.
  • After the message use re-castingto edit the user's message - If the child makes the message, "I good." You re-cast it by saying, "I am good."  (This one comes naturally to moms and those who spend time with small children.)  
  • Ask open ended questions to expand, "I think you are good.  Why do you think you are good?"
  • Respond to every communication attempt - even if it is just to say you heard him or her and the answer is no.  
  • Assume intentionality to teach intentionality.  One of the worse things we can possibly do is doubt the child's communication.  How many times have you heard someone say, "I don't think he meant that", right in front of the student?  We must assume that all communication is purposeful for the child to learn that communication is a worthwhile endeavor.  
  • Make sure the device or system is always available, how else will the user learn how important and valuable it is if we don't go through that trouble?
  • You are not the blue fairy, you do no good to anyone by magically reading an AAC users mind and providing everything they need whether they ask or not.  (Yes, maybe you are his or her mother, but how would you like it if YOUR mother tried to read YOUR mind?)  Learn to step back and wait for requests, if you must take action then model how to request on the user's device before you do
  • Have a low tech back up to high tech systems, and teach how to use that too
  • Beyond all else, BELIEVE! Believe in the power of AAC.  Believe in your power to give the gift of communication.  BELIEVE that your student or child can learn how to communicate.
Can I get an, "Amen"?

P.S.  I had many, many conversations with and watched many presentation by teenagers and adults who use AAC fluently at the ISAAC Pittsburg and Toronto conferences. Some used light tech, some used Toby Churchill Lightwriters, Some used PODD, some used Tobii Dynavox, some used iPads, many used PRC devices.  There is NO such thing as one size fits all in AAC. 

Sunday, July 24, 2016

What is a robust vocabulary in AAC?

Robust vocabulary is one of those terms you encounter frequently in the Augmentative and Alternative Communication (AAC) community.  It is a term that isn't always explained. Here is an overview of what a Robust AAC Language System includes:
  • Motor planning is supported by consistent vocabulary arrangement
  • Expandable vocabulary allowing it to grow as skills improve
  • Grammar is supported, including verb tenses, declensions and comparisons/superlatives 
  • Alphabet is available for spelling including supports of letter/word/phrase predication and spelling correction
  • Pre-programmed whole messages are available for fast moving social occasions and emergency situations 
  • Core words are available and are large in number with all parts of speech/word types represented 
(Look! That's an acrostic for MEGA PC!  A robust system is a MEGA Personal Communicator!)

So what do is meant by these things?

Motor planning is the ability to learn to access your vocabulary through muscle memory.  Think of the entering numbers on a phone or calculator, touch typing or even pressing the "home" button on your phone or tablet.  You are likely able to do these things without looking or thinking about them.  You know where the keys are and your body is able to find the right buttons.  Or think about driving home from a location your frequently visit.  You go on auto-pilot to some degree, finding yourself reaching for your turn signal before the turn.  This is muscle memory.  A robust vocabulary has been arranged with motor planning and muscle memory in mind in the hopes that users will learn to access their language system without having to think about where common words are located.

Expandable vocabulary is the ability to add words to the language system as skills increase.  This goes beyond the ability to hide and unhide buttons (mask and unmask buttons) or add in a word here or there.  It's the ability to start off with less buttons per page and move to more buttons per page as vision, vocabulary or access skills increase without having to learn a whole new language system.  When systems do not allow for this they are essentially insisting those that need to start with less buttons at first because of vision or access issues must learn a whole new language when they are ready for more buttons.  Or the converse, when someone who is able to access many buttons per page looses some ability, as is frequent in some conditions that cause a need for AAC, the user must start all over again.   A robust system allows the user to increase (or decrease) the available vocabulary as skills change.

Grammar means the ability for the user to generate sentences that use correct and understandable grammar.  It is the ability to use all tenses of verbs and all declensions of nouns, pronouns, adjectives and adverbs.  Grammar is the ability to say, "Last week my brother and I went to a great restaurant and tomorrow we will go again" instead of  "Last week my brother and I go to a good restaurant and tomorrow we go again." A robust system has the ability to access grammar to make sure the user can say exactly what he or she means to say.

Alphabet access is the ability for the user to spell in an efficient manner and have supports to do so.  Those supports might be letter/word/phrase prediction, abbreviation expansion, and grammar and spelling correction.  The only way to be 100% certain that an AAC user can say everything they want to say is to give them access to spelling and teach them how to use it!  There is no such thing as putting "All.The.Words!" as many AAC supporters like to advocate on a device.  That is because their are about 1,025,109 words in the English language!  Even if you limited a device to the approximately 750,000 words in active use without their various forms (which adds about 10,000 more words) there is no way to fit all those words into a word based language system!  Compare that to the about 6,000 words in Unity 84 Sequenced or 12,000 in Proloquo2Go (set to advanced Crescendo with all buttons available).  Suffice it to say "All.The.Words!" means spelling.  A robust language system has access to the alphabet and the supports to use it well.  

Pre-Programmed Messages are phrase or sentence based messages available for playing back in very specific situations.  They are helpful in fast moving situations, places that follow a certain script or times when communication partners may not know or be able to wait for a message to be created.  An example might be at the pharmacy.  An AAC user picking up medication at a pharmacy will likely follow a certain script.  "I am picking up a script for _______.", "My address is _________." (Or birthdate, depending on the pharmacy) and "Thank you."  There are a few things that might be needed for trouble shooting "There should be X prescriptions." or "My co-pay should be X".  Having these messages ready means faster service, not holding up the line and getting on to errands that may be more fun.  Pre-programmed Messages are also useful in social situations such as passing time in the hall at school.  They are also necessary in emergencies.  Examples might be, "I am having an aura.  I am going to have a seizure.  My emergency medication is in my bag in the outside pocket.  Call 9-1-1 if it lasts longer than 5 minutes." or "I am lost.  Please call my caregiver's cell phone at XXX-XXX-XXXX and give them this location."  Sometimes the see-saw of AAC heavily leans towards core words, and they are vital, but pre-programmed messages are also a key part of a robust AAC system.

Core Vocabulary has been the a strongly advocated basis of AAC Systems for many years.  Core vocabulary words make up 80% or more of what we say.  They are the recyclable words of our language able to be used and reused again and again in many, many situations.  A robust language system has a base of core language.  A lot of core language.  Some experts say at least 300 words.  Core words are the center of a robust language system. 

For information on robust AAC systems and teaching a robust language system see these links:

Wednesday, April 6, 2016

Yes, And?

I am just sitting here thinking about how random some AAC device activations can seem when they aren't. Two examples from a child today:

1) at the park the child pointed at her friend and then said "win basketball". No basketballs in sight. It took me a minute and I never would have figured it out if I didn't know the friend and her mom. My student's friend's basketball team had recently won the championship.  It would have been easy to ignore or tell her that there weren't any basketballs around. And though this student has some excellent and emerging AAC skills she doesn't yet know how to repair. So, had I dismissed her comment she would have just gone along with it. It terrifies me a little how much power the communication partner, in this case, me, has in interacting and learning with an AAC user.  "Win basketball"? Spot on. 

2) later we were tired and sitting in the student's living room, she had just asked for her one of her favorite AAC activities - FaceTime. Luckily my relatives, a few friends and the student's grandmother are very willing to oblige her desire for a sometimes very distracted video chat. So we reached my cousin on the FaceTime and at the end of the conversation the student says "dishcloth" twice. I told her I didn't understand and it was time to say bye, essentially dismissing her comment as a random activation. We hung up and the student hands me something she had accidentally put in her mouth while her aide hands her, you guessed it, a nearby dishcloth! The student wiped her hands and I felt like a jerk. It wasn't obvious or anything, I didn't feel like a jerk for missing what she might of meant. 

I felt like a jerk for forgetting the first rule of improv, which is also the first rule of chatting with an emergent AAC user as well - "yes, and?" In improv you always go with what is said, you don't shoot anything, down you are flexible and you go with it. Now your improv partner is barking like a dog? You don't say "Wait, we were pretending to be in a bank" you say, "Oh no! The bank robber hypnotized you! I knew I recognized him!" Or just about anything else to keep the exchange going. And in chatting with an AAC user you don't say "Dishcloth? I don't know what that means." (And then change the subject.) Instead you say, "Oh, a dishcloth? What about a dishcloth?" Yes, and?

P.S. All of the rules of improv, especially the first five, are powerful in working with early, beginner and emergent AAC users:

1) Say “yes’and!”
2) Add new information.
3) Don’t block.
4) Avoid asking questions- unless you’re also adding information.
5) Play in the present and use the moment.

Thursday, March 24, 2016

Rethinking the AAC Prompting Hierarchy in Severe Apraxia

Prompting Hierarchies have been a staple in special education, behavioral methodology andcommunication therapy for some time. However, when it comes to children with severe apraxia, with or without coexisting anxiety, (Rett Syndrome, Angelman Syndrome, ASD, etc) the commonly used prompting hierarchy can complicate instead of simplify teaching augmentative and alternative communication.

Many studies now support aided language stimulation or direct modeling as a primary intervention that should be ongoing and intense with child who are learning to use AAC. Given this knowledge we should move modeling from a step in the hierarchy to the umbrella that covers all of the other steps in AAC teaching.

Another flaw in the commonly used prompting hierarchy in AAC is the use of direct verbal/requesting a response/giving a command as a "cue" or "prompt". Telling a child what to "say" with their talker isn't a cue or prompt. It is a command and usually it is testing. When we equate communication with testing we lose out on what drives communication (and humanity, when it comes down to it) - an inherent desire to connect with another person. Sometimes that connection is about meeting a need or want and sometimes it is about sharing information, being polite or socially being part of an interaction. But we negate that when we command child to say something specific. Furthermore, such demanding/testing type interactions increase anxiety (fear of getting it wrong, fear of disappointing, etc), oppositional behavior (the child's desire to prove that the he or she has power) and apraxia.

Apraxia is a neurological disability that impacts the child's ability to follow a direction in spite of the directive being understood, a desire to follow the directive, the physical ability to follow the directive and sometimes, a previously shown ability to follow the directive. In short, the more the child WANTS to do something the more apraxia stops them. This is neurological, NOT a behavior. Anxiety and demands increase the apraxia. So the child might still be working through the previous levels of cues you have given but then you make the demand "show me_______" or "say_________" and all bets are off! It will be nearly impossible for the child to do as you say at this point. Creating a amicable bond, sometimes even an almost conspiratorial connection is much more likely to enable a child with severe apraxia to be able to communicate. Non-directive and non-confrontational is the way to go in apraxia if you want results!

Finally there is the issue of "hands-on" cueing. What does "hands-on" cueing really mean? It basically means we MAKE the child press or activate buttons on their devices. (The child actively taking your hand is different than you taking the child's hand.  Yet, this should still be faded as soon as possible.)   Hand-over-hand and hand-under-hand both are hands-on.

What does a hands-on, full physical "cue" this tell the child? It tells them that A) we have the right to manipulate their bodies or make them touch or do things whether they want to or not and B) that we have the right to force them to say things just because we want them to say it. It teaches them that if they don't comply with a directive (regardless of if they understood it or if apraxia stood in their way) we will make them comply with the directive.

Our students are some of the most vulnerable human being anywhere. Consider this statistic:

More than 70 percent of those with disabilities polled said they had been abused and over 60 percent of family members indicated that their loved one with special needs had been mistreated. (http://www.disabilityandabuse.org/survey/survey-report.pdf)

Or this one:

More than ninety percent (90%) of people (both male and female) with developmental disabilities will experience sexual abuse at some point in their lives. Forty-nine percent (49%) will experience ten or more abuse incidents. (Valenti-Hein, D. & Schwartz, L. (1995). The Sexual Abuse Interview for Those with Developmental Disabilities. James Stanfield Company. Santa Barbara: California)

Now tell me again how is it ok to teach children who have significant disabilities that they should allow others to make them do things with their hands and that they should allow others to "put words in their mouths"? We have almost a sacred duty to do everything in out power as educators, therapists, caregivers, parents to prevent abuse of our students - now and in the future. And this starts with teaching them that they have the right to be respected in what they do (and don't do) as well as what they say (and don't say). It might be the most important thing we do. We must take it seriously. We must make it a priority. And that means finding new ways to teach and "cue"/"prompt" (it definitely isn't a prompt if it is hands-on). We are an intelligent, creative and compassionate field, certainly we can find other ways?

Additionally a "full physical" or hands-on situation, where we make the child "say" something with the device, teaches the child that language/words are something put upon them by others.  If we want our students to see the power of their AAC systems we must let them see, in both our modeling and in how we teach and respond to their AAC, that the power of language/words is that it comes from INSIDE us and can affect those OUTSIDE us.  Children can't learn that if we are constantly putting them in a position where the words come from someone else who is physically making them access their communication system.  In teaching AAC we are setting the child's attitude about using their speech system for the rest of their life.  It is so much better that we teach them the value of their system from the beginning instead of having to combat a negative attitude about their communication system that is created by how we taught them in the first place.

So we must rethink the prompt hierarchy. We make modeling a setting event that happens ALWAYS. Then we use the expectant pause, indirect gestural cue (body language), direct gestural cue (pointing), indirect and partial verbal cues (phonemic cue, hinting) and then we return to modeling and move on.

Why don't we force the issue until we get the device activation we want? Because communication isn't a test and nothing is so important that we put our hands on and make them say something. Instead we increase the motivation of the child (through preferred activities, child led sessions and our own demeanor), we increase the modeling of the AAC device or system and we move out of the way and let the child come to an understanding of their communication system and the power it has through repeated meaningful experiences.

Tuesday, March 1, 2016

Rare Disease Day

February 29th is Rare Disease Day
So many of the children I work with and adore have rare diseases. I hope today doesn't just increase awareness of those who rare diseases and the need for research into improving their quality of life today and finding treatments and cures in the future but also the potential in each of these amazing individuals. I learn far more for the children I work with than they learn from me. They all have something to offer the world and we all have something to learn.

The children I work with have many syndrome and disorders among them Rett Syndrome, Angelman Syndrome, Cockayne Syndrome, Pitt-Hopkins syndrome, forms of muscular and leukodystrophies, various Mitochondrial Diseases and more recently identified rare genetic disorders with only genetic names CDKL5, GRIN2B, FOXG1 Many of these disorders are life limiting still for many a cure may be on the horizon. Our job as educators is to keep our students ready educationally, emotionally and physically for that cure, whenever it may come. Our jobs are vital, to see in each rare child the potential that is inherent but hidden to many.

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