After receiving his communication device, Frank returned periodically to learn new things and make sure he was communicating as effectively as possible.  He was independent in caring for and operating his communication device, used both pre-stored messages (e.g., “I have a question for you” or “Hi, how are you?”) as well as spelled out whatever he needed to say, enjoyed interacting with others, and was able to clarify himself when his communication partner didn’t understand his message.  Overall, Frank was a very good communicator.

As I got to know Frank, I really enjoyed hearing his stories about life in the nursing home, his outings in the community, and visits with his family.  Of course, I also heard about his frustration with the nursing staff not listening to him and his disappointment when decisions were made for him without his input (like his placement in the nursing home rather than an apartment with some caregiver support). 

Why am I telling you about Frank?  As a way to talk about self-advocacy.  Whether he knew the term self-advocacy or not, Frank’s decision to pursue an evaluation for a communication device was evidence that he could advocate for himself.  In light of his ongoing frustrations and disappointments, how could Frank have used his communication device to continue his self-advocacy?  Here are a few ideas:

1. Frank should use his communication device to make as many choices for himself during the day.  These choices might include what he wants to wear, whether he wants to go to the dining room or not, and whether he wants to participate in different daily activities.  What does this have to do with self-advocacy?  According to Barbara Collier (2006), a speech-language pathologist who has done a lot of research into self-advocacy, “it is important to note that the ability to direct personal services is integrally related to a number of self-empowerment skills. These skills include the ability to make choices, to solve problems and to self-advocate.”  Basically, making choices is an important stepping stone to higher-level advocacy.
2. Frank could also benefit from directing his personal services (personal care) more effectively.  After indicating his choices, he might need to follow-up with the direct care staff that appear not to be listening to him (one of his frustrations).  This includes talking directly with direct care staff (e.g., “That’s not what I said…let me tell you again” or “Please let me choose for myself.  I am an adult” or “Thank you for helping me.  Next time, could you do that a little more gently” or “If you continue to ignore my wishes I will need to talk with your supervisor”) and, if necessary, with their supervisors.  This assertiveness would be difficult for Frank but was a necessary step to his self-advocacy.
3. Frank could request a meeting with his family and his case manager to discuss his living situation.  Before this meeting, Frank should pre-store messages related to his desires for where he would like to live (e.g., group home, apartment with 1-2 roommates, independent apartment) and the questions he has about reaching that goal.  During the meeting, he could share these ideas, hear feedback from his family and case manager, and problem solve about making the change.  Even if the process of moving was a year or longer, knowing that he was working towards his goal could improve Frank’s quality of life.

While I have lost contact with Frank, I hope someone helped to guide him along the path to self-advocacy!

For other perspectives on self-advocacy, I’d encourage you to read these earlier posts to Voice for Living (http://www.voiceforliving.com/2011/01/arguing-and-self-advocacy/ and http://www.voiceforliving.com/2010/03/advocating-for-yourself/).  

Reference

Collier, B. (2006). Home Study Guide for Communicate 4: Supporting youth and adults with physical disabilities in communicating about their services and participating in their communities. Pittsburgh: DynaVox Technologies.

For many AAC users, saying 16,000 words each day might seem impossible—especially when we struggle to find 4 or 5 times each day when they can use their device.  And yet, increasing communication is important not only for general participation but also for learning about language and communication.  How can you help to increase the number of words the AAC user in your life uses each day?

In order to increase the number or words used each day (or, more broadly, opportunities for communication) you do not need to start looking for all sorts of new activities that will require a lot of planning and development on your part.  That is good news!  Rather, I would encourage you to look at what is already happening during the day and consider which of those activities provide good opportunities for communication. 

The Selecting Activities Worksheet  from the Implementation Toolkit provides a framework for teams to consider when and how to address increased communication.    This multi-part worksheet will walk you through: 

1. Identifying activities that are happening throughout the course of a day.  The calendar goes from 12:00 AM to 11:00 PM so pretty much every activity during the day or night can be identified!
2. Determining which activities on the list are:
   1. Motivating to the AAC user.  Motivating activities are ones that make him/her smile!
   2. Important for the AAC user.  Important activities are ones that you think require communication.  They often revolve around physical care, social etiquette, or academic/vocational activities.
3. Prioritizing activities that are motivating and important.  While we want to have lots of opportunities for communication each day, it can be overwhelming to get started if we don’t narrow our focus a bit.  Prioritizing should the frequency with which an activity occurs into consideration as well.
4. Determining vocabulary types and teaching strategies that should be used during the targeted activities.  This portion of the worksheet will help make sure that the needed supports for successful communication are in place. 

Good luck as you search to find new or better opportunities for communication!

After receiving his communication device, Frank returned periodically to learn new things and make sure he was communicating as effectively as possible.  He was independent in caring for and operating his communication device, used both pre-stored messages (e.g., “I have a question for you” or “Hi, how are you?”) as well as spelled out whatever he needed to say, enjoyed interacting with others, and was able to clarify himself when his communication partner didn’t understand his message.  Overall, Frank was a very good communicator.

As I got to know Frank, I really enjoyed hearing his stories about life in the nursing home, his outings in the community, and visits with his family.  Of course, I also heard about his frustration with the nursing staff not listening to him and his disappointment when decisions were made for him without his input (like his placement in the nursing home rather than an apartment with some caregiver support). 

Why am I telling you about Frank?  As a way to talk about self-advocacy.  Whether he knew the term self-advocacy or not, Frank’s decision to pursue an evaluation for a communication device was evidence that he could advocate for himself.  In light of his ongoing frustrations and disappointments, how could Frank have used his communication device to continue his self-advocacy?  Here are a few ideas:

1. Frank should use his communication device to make as many choices for himself during the day.  These choices might include what he wants to wear, whether he wants to go to the dining room or not, and whether he wants to participate in different daily activities.  What does this have to do with self-advocacy?  According to Barbara Collier (2006), a speech-language pathologist who has done a lot of research into self-advocacy, “it is important to note that the ability to direct personal services is integrally related to a number of self-empowerment skills. These skills include the ability to make choices, to solve problems and to self-advocate.”  Basically, making choices is an important stepping stone to higher-level advocacy.
2. Frank could also benefit from directing his personal services (personal care) more effectively.  After indicating his choices, he might need to follow-up with the direct care staff that appear not to be listening to him (one of his frustrations).  This includes talking directly with direct care staff (e.g., “That’s not what I said…let me tell you again” or “Please let me choose for myself.  I am an adult” or “Thank you for helping me.  Next time, could you do that a little more gently” or “If you continue to ignore my wishes I will need to talk with your supervisor”) and, if necessary, with their supervisors.  This assertiveness would be difficult for Frank but was a necessary step to his self-advocacy.
3. Frank could request a meeting with his family and his case manager to discuss his living situation.  Before this meeting, Frank should pre-store messages related to his desires for where he would like to live (e.g., group home, apartment with 1-2 roommates, independent apartment) and the questions he has about reaching that goal.  During the meeting, he could share these ideas, hear feedback from his family and case manager, and problem solve about making the change.  Even if the process of moving was a year or longer, knowing that he was working towards his goal could improve Frank’s quality of life.

While I have lost contact with Frank, I hope someone helped to guide him along the path to self-advocacy!

For other perspectives on self-advocacy, I’d encourage you to read these earlier posts to Voice for Living (http://www.voiceforliving.com/2011/01/arguing-and-self-advocacy/ and http://www.voiceforliving.com/2010/03/advocating-for-yourself/). 

Reference

Collier, B. (2006). Home Study Guide for Communicate 4: Supporting youth and adults with physical disabilities in communicating about their services and participating in their communities. Pittsburgh: DynaVox Technologies.

However, unlike the verbal residents who got to keep their voice, the individuals who used AAC frequently had their devices taken away.  While I’m sure we have all thought about taping someone’s mouth shut or wishing they just couldn’t talk for a little while (or couldn’t say certain things), it does seem pretty obvious that taking an AAC device away is not an appropriate option.  So, what can we do about providing personalized vocabulary that is very important to an individual while ensuring that the vocabulary is used appropriately? 

1. Discuss how and when the vocabulary will be used as you are programming it.  Talk about the effect that using certain vocabulary could have on nursing staff or doctors.  Talk about the consequences that could happen if the vocabulary is used inappropriately (e.g., the nurses might not feel comfortable helping the resident; the doctor might not take time to explain something in the future).  Talk about the benefits of using such vocabulary with family members or friends (e.g., helping those individuals see the person as they were before their stroke or TBI).  Make sure that there are alternate vocabulary options that will be acceptable to a variety of listeners.
2. Educate staff (and other communication partners) that AAC users who say funny, complimentary, and even off-color things should be treated in the same manner as verbal individuals who say the same things.  This might include laughing at the joke, accepting the compliment, or telling the individual not to speak with them in that manner.  It might include explaining that certain words are offensive or make an individual feel uncomfortable.  It should NOT include taking the device away or deleting specific messages from the device.

The goal is for individuals with aphasia or TBI to be able to express themselves using their words and their thoughts in a way that will get through to their listeners!  Please see the blog entry called “Peculiarities” (http://www.voiceforliving.com/2010/11/peculiarities/) for more information on where to store personalized vocabulary.

For the individual with a stroke/TBI:

1.  Give specific directions to your caregiver.  It may take a while to determine all of the right messages to program on your communication device but the result will be worth it.  You not only want to be able to request general things (e.g., “I’m ready to get dressed now” or “please clip my nails”) but you also want to request very specific things (e.g., “I need to wear sweat pants for therapy today” or “leave my nails a little longer than you did last time”).
2. Provide feedback to your caregiver.  You want to be able to praise your caregiver (e.g., “That tastes great” or “I like the way you did my hair”) but you want to offer constructive suggestions (e.g., “Next time please don’t make my toast so dark” or “Please be more careful when my hair has snarls”).
3. Consider using “softeners” when providing directions or feedback.  Messages like “When you have time…” or “I know you don’t mean to but…” can help your caregiver feel better about what is coming next.
4. Be appreciative.  Your caregiver may not think he/she needs to hear you say “thank you” but it is still a good idea.  Kind words can go a long way.   

For the family member:

1. Don’t make assumptions.   Offer choices for food, clothing, and activities each day.  Just because the same choice was made for three days don’t assume they want the same thing today.  Offering choices allows the individual a degree of control.
2. Ask for clarification if you don’t understand the first time.  Pretending you understood the request, whether it was from the AAC device or speech/gestures, will not help your interaction.  Take the time to ask for repetition to make sure you know exactly what the individual meant.
3. Respect your loved one’s wishes.  If he/she requests sweatpants or a totally different hair cut, go along with the request.  Attempts to communicate will soon come to an end if they are not responded to or respected.
4. Make sure the AAC user has access to all of the different kinds of messages suggested above.  You may need to help program them into the communication device (or suggest to the SLP that they be added).

Note:  Many of these ideas are also appropriate for caregivers who are not family members.

The more I think about vacation as a combination of the new and the familiar, the more I realize that the same is true of life at home.  Sure, maybe the percentage of familiar is higher at home but both types of activities exist.  What does this mean for AAC users who have had a stroke or TBI?  Here are a few ideas:

Familiar Activities:

1. Use of pre-planned vocabulary:  For activities that happen every day (or at least on a regular basis), having access to commonly used messages can make interaction simpler and more efficient.  These messages might be complete sentences related to the activity (e.g., “Anything interesting in the newspaper today?” or “Don’t forget my medication” at breakfast.  “Are the Packers on?” or “Turn it up please” while watching TV).  The messages might also be single words or phrases that can be used in lots of familiar activities (e.g., “Good.”, “Really?”, “I don’t know.” or “I agree.”).  Check your communication device to see if both of these types of messages already exist.
2. Use of reminders:  Some communication devices allow you to set reminders for regularly occurring activities.  For example, you can set a reminder that will speak and show a visual message at a set time every day to remind you to walk the dog or check the mail,You might also be able to set a reminder to not only speak and show a visual message but also navigate to a specific page on the communication device.  For example, if you had a reminder to “Call Bob,” your device could also be set to switch to the phone page to make it easy to both call and talk with Bob.  Overall, reminders can support independence and participation in routine activities. 
3. Use of calendars:  Calendars can show recurring activities (e.g., doctors’ visits, therapy appointments, hair appointments, reading at the library) in a way that is familiar and logical.   

In addition to reminding people about upcoming events, and providing a way to start a conversation about those events, calendars can be used to reference or talk about past events. 

New Activities:

1. Use of pre-planned vocabulary:  Some of the same messages I mentioned under familiar activities can also be used in new activities (e.g., “Good.”, “Really?”, “I don’t know.” or “I agree.”).
2. Use of vocabulary lists, core words, and keyboards:  When activity specific vocabulary isn’t available, lists of words organized by category (vocabulary lists), collections of words designed to allow you to put together sentences (core words), and keyboards that allow you to spell words can be useful.  When at the pharmacy to fill a new prescription, spelling even “s-i-d” after the pharmacist asks if you have questions could cue him to tell you about side effects.  Using the “finances” vocabulary list during a trip to the accountant or even a vacation trip to the US Mint could help increase participation. Note:  This kind of vocabulary can also be used during familiar     activities as well—after all, we can’t predict everything we say—even in familiar activities.
3. Use of calendars:  Just like calendars can show recurring activities, they can also be used to show new activities in a familiar and logical way.  This calendar is being used to show activities for a trip to visit family.   It can be used weeks in advance to begin to prepare for the different activities, during the trip for organization, and afterwards to reflect.

1.  Short-term thinking can lead to long-term results.  One thing I have seen over and over with AAC users and/or their support system is a focus just on the long-term.  That focus is something like “I want him to independently tell me how he is feeling” or “I want to be able to be independent like I was before.”  Usually, the focus is a great one…the problem is that it is overwhelming.  The end result of focusing on the long-term goal is a sense of frustration at not automatically being able to meet that goal with AAC.  Based on this New Year’s Resolution tip, a better approach might be to set short-term goals rather than just the long-term one.  So, if the long-term goal is to “independently tell me how he is feeling” a short-term goal might be to express a physical state (e.g., hungry, tired) within the first two weeks.  Another short-term goal might be to label emotions seen in pictures.  Another short-term goal might be to express emotions with support from a communication partner.  A final sort-term goal might be to express those feelings as well as providing reasons for why he is feeling that way.  Meeting (or even just addressing) all of those short-term goals can lead to meeting (or just getting close to) the long-term goal!
2. Forget about perfection.  Have you ever stopped working out altogether because you had to miss a workout?  Given up on a diet because you ate two pieces of cake at a party?  Perfection is hard to come by in New Year’s Resolutions and in communication.  Even verbal communicators forget a word, say something incorrectly, are misunderstood by others, and need help from their communication partners.  Why should AAC users (or their communication partners) expect perfection?  Maybe it is because they try so hard using their AAC system and have experienced so much failure/misunderstanding in communication since their stroke or TBI, they want everything to be perfect now. Maybe it is because communication partners view needing help as failure.   A healthier approach might be to accept that mistakes will happen and plan on ways to recover from them (See my blog post titled Preventing Misunderstandings for more information on this subject.).  Another healthier approach might be for communication partners to accept their role and the support that they can provide.  Read the article Communication Partner Strategies for People with Aphasia for more information.
3. Have high-expectations with realistic short-term goals.  This suggestion goes hand-in-hand with suggestion number one.  Basically, it repeats the idea that high long-term goals are important but so are shorter-term goals that will help you get to the long-term goal.  Think big but start small! 
4. Take a realistic look at what is happening right now.  According to the article, telling someone that smoking might kill them is less likely to cause them to stop smoking than telling them that their children are embarrassed that their clothes smell like smoke.  In terms of communication, it can be important to understand that not having a functional way to communicate might keep one person from getting to watch the kind of movie he likes.  In another instance, it might keep a grandmother from talking to her grandchildren.  Addressing these individual realities might lead to more successful use of AAC than talking about a lack of functional communication leading to depression or use of AAC not inhibiting the redevelopment of speech. 
5. Take advantage of the support of others.  According to the article, resolutions are more likely to be kept if everyone is working together.  For example, a husband is more likely to lose weight if his wife and children also think that is a good idea and aren’t trying to tempt him with chocolate and other treats.  AAC users should express to their family members and caregivers why improving their communication is so important.  Family members and caregivers should express to individuals who have had a stroke/TBI why using AAC is so important to them.  By working together, some of the traps expressed in numbers 1-4 above can be more easily avoided!

I hope these suggestions will help you to stick with your use and/or support of AAC long past January!

1. Introduction strategy:   According to Janice Light (1998), an introduction strategy is used by individuals who use AAC when they are meeting new people.  The introduction strategy has two key elements: 

a. Information about the means of communication (e.g., “I use this computer say words because it is hard for me to talk.” Or “I had a stroke and sometimes the words I want to say don’t come out right.  I use this machine to help me when that happens.”

b. Instructions on how to interact (e.g., “Please talk to me normally.  I can hear you but I just cannot speak very well.” Or “Please give me a little extra time to take my turn — I know what I want to say but it might take me a little while to say it.”)

Introduction strategies are valuable because they help to make both parties more comfortable and can even help communication partners view the person using augmentative and alternative communication (AAC) as being a more competent communicator.  Both of these are helpful when talking with new people.

2. Pre-planned conversations:  If at all possible, program messages that will help get the conversation off on the right foot.  If you are going to talk with a child about a new job possibility, pre-program a few messages that will allow you to introduce your position.  If you went to a movie or sporting event over the weekend and know you will want to share your experience with a number of people, save statements about the event and questions you would want to ask your communication partner.  Far from making interactions “generic” or “stale,” pre-programmed messages help to facilitate more natural interactions and result in positive feelings from both the individual using AAC and the communication partner.  Read a research review on this topic  at the Implementation Toolkit.

For some people who have had a stroke or Traumatic Brain Injury, another person will need to do the actual programming of messages.  Others can do the programming themselves.  Either way, pre-planning is an effective tool and one that becomes easier over time.  For suggestions, check-out this resource at the Implementation Toolkit.

3.  Specific phone messages:  Because there are no visual cues over the phone, conversations can be more difficult to understand.  It can be helpful to have a few messages (such as “Can you hear me OK?” and “Please let me know if I need to repeat anything.”)  that are used at the beginning of conversations, especially those with less familiar listeners, to set the tone and provide direction for the listener.  Other messages (e.g., “Does that make sense?” “Right?” or “Do you agree?”) can be used throughout the conversation to make sure the listener is following.

For individuals who need to use the phone to make appointments, spelling names or addresses can sometimes be difficult.  Since many letters sound alike, it can be difficult for a listener to understand if the individual using AAC is saying “d” or “b.” Programming a page of buttons with hints like “A as in alpha,” “B as in baker,” “C as in Charlie,” etc. can be helpful.  If the main issue is with a specific name, the letters and word cues could all be programmed on a single button.

4.  Use of recorded speech:  Many communication devices that primarily use computerized (synthesized) speech also have the capability to store recordings of human speech.  This feature can be a nice way to incorporate a favorite saying that needs inflection or tone to sound right or even to have access to a number of words in another language.  What’s more, recorded human speech can be really useful for preventing misunderstandings.  How?  Well, think about the last time you answered the phone, heard a little bit of a pause, and then heard a computerized message on the other end.  What did you do?  If you are like me, you probably assumed it was a telemarketer or political campaign message and quickly hung up!  How frustrating would it be if you were using an AAC device and regularly had people hang-up on you when using the telephone?  One way to change this scenario is to have someone record a message like “Hi, my name is Kristin and I use a computer to help me communicate.  The voice sounds a little like a computer so please don’t hang up on me!”

Enjoy less stressful conversations!

Reference:  Light, J.C., & Binger, C. (1998). Building communicative competence with individuals who use augmentative and alternative communication.  Baltimore: Paul H. Brookes.

Tags: augmentative and alternative communication, AAC, stroke, traumatic brain injury, TBI, synthesized speech, digitized speech, introduction strategy, pre-planned messages, effective communication

1.  This entry from the ALS blog highlights the importance of having access to a low-tech form of AAC (like a communication board or book) even after you get a communication device:  I have a Speech Generating Device.  Do I Really Need a low-tech Communication Method?.   This entry from the Success Using AAC blog reinforces that same topic: Having a Backup Plan.
2. This entry from the ALS blog highlights the importance of teaching communication partners how to communicate with an AAC user, a topic we have covered several times in this blog:  Teach Your Partners Well.
3. This entry from the Success Using AAC blog encourages participation in government:  Getting Involved in Government.  A bigger message you could take from this blog is to continue participation in whatever activity was important to you before your stroke or TBI.  Or maybe the message is to start advocating for yourself now that you have a different perspective due to your stroke or TBI.
4. This entry from the Implementing AAC in Classrooms blog talks about the importance of teaching individuals how to end a conversation as well as starting it:  Lasting Impressions.
5. This entry from the Implementing AAC in Classrooms blogs stresses the role humor can have: Knock Knock.  Telling jokes is not just for children — jokes and funny stories play a role daily for many of us!

You may never have looked at the other blogs for fear they wouldn’t offer anything useful for you.  Hopefully you will now!  Happy reading!

Misunderstandings happen, both for individuals who are verbal and for individuals who use AAC.  The key is being able to fix the misunderstanding before it becomes a barrier to a successful interaction.  This can be hard for those of us with easy and quick access to any word or combinations of words…but what about individuals who use AAC?  What happens when the misunderstanding goes on while the individual tries to find a way to restate?  What happens when the listener becomes offended by what he or she thought we said and ends the interaction?

Obviously, we cannot plan for every misunderstanding that might happen.  We cannot have messages pre-stored on communication devices for every situation.  Neither can we expect the AAC user to always be able to use core words or the keyboard to correct the situation quickly enough.  Here are a few simple ideas that might help—especially if you talk about them and practice using them ahead of time:

1.  Use a pre-stored message like “Wait” or “Just a second” or “Hang on” as a generic way to indicate that you have something to say.  This will alert your listener that they shouldn’t continue on—especially if they are going down the wrong path.  These words fit into the category we call Quickfires on DynaVox devices and should be accessible very quickly.
2. Have a selection of generic clarifiers available to get things started.  Messages like “that’s not what I meant” or “I think you misunderstood me” or “let me say that again” are useful as they not only alert the listener that you have something to say but also that they didn’t quite understand.  On DynaVox devices, these types of clarifiers frequently appear on conversation or social pages.
3. Teach the use of key words.  Sometimes just one word can get a conversation back on track.  The problem is we often try to say a lot of words at a time.  Teaching AAC users to communicate a single word—a name, an object, a place, a feeling—can help to clarify without muddying the water.  On DynaVox devices, key words can be accessed in the word lists, core vocabulary, or using the keyboard with word prediction.
4. Know that it is OK to give up!  Sometimes, the best option is to drop the conversation…at least for the time being.  Have a message that says “I need to take a break now” ready for these situations.

I would love to hear about your misunderstandings…and how you fixed them!