What I Learned When I Decided to Become America’s Next Top Modeler

In my postings of June 25 and June 29, 2016, I told the story of Velma and her journey of learning how to model on an AAC system. When I last wrote, Velma was in week six of a ten-week plan. She was on the home stretch to becoming America’s Next Top Modeler.

Velma got a little sidetracked in weeks seven to ten. I was gone for 3 of those 4 weeks, she took some time off, the client’s device had some operational issues, and the dog ate the visual supports I made (well… not that last one, but they went missing.)

On the up side, Velma had developed sufficient skills and learned enough vocabulary in order to be a competent vocabulary modeler on the Unity144 program, even without the visual supports.   Even though she lost the scripts and didn’t have the visual supports,  I could glean the gist of the conversations she was having with the client (and her modeling)  by reviewing data from the Language Activity Monitor.

On August 23rd, we finally had our party to celebrate Velma’s accomplishments. After being “crowned” America’s Newest Next Top Modeler, she summarized what she learned from this experience.

  1. It’s not right to say to a client, “use your device,” if you can’t use it yourself.
  2. Model something on the device everyday, starting with things that only take a minute or two.
  3. You aren’t going to learn how to talk with the device unless you do it over and over and over. Don’t get discouraged.
  4. Some modeling is always better than no modeling; while more modeling is the best.
  5. The 10-week plan (made by Gail) was helpful because every week there was something new to work on together.
  6. Use reminders (e.g., sticky note on the door to the client’s bedroom, alert on your phone, etc.) to remember to work on your modeling goal for the day or week.
  7. Get a “modeling buddy” who will help you stick to your plan.
  8. Use vocabulary cheat sheets to practice finding the vocabulary until you don’t need them anymore.
  9. Laugh when you make mistakes, especially when you say a word that is really embarrassing.
  10. If you find yourself spelling a word over and over (because it is not pre-programmed in the device), get it added to the device.   If you need the word, the client (who is not a competent speller) may also need it.

Thank you Velma for those words of wisdom!

hp 1630 g 0041Wear your crown proudly! 

 

My Personal Experience of Inclusion

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I graduated from high school in 1972. As an elementary school student (1960-1966), I was taught in a three-room schoolhouse. First and second graders were housed in one room, third and fourth in another, and fifth and sixth in the other. We had less than 10 kids in most of the grades, so each room and teacher had around 20 students. We were grouped into one big class and our teacher used many strategies to cope with our diverse abilities.

One of my classmates had learning challenges. Her name was Sharon (not her real name) and she was cognitively impaired with a seizure disorder. We all knew Sharon was “different,” but no one made a big deal about it. We were all taught what to do in the event that Sharon had a seizure. And many of us were assigned to be Sharon’s helpers.  I have a distinct memory of sitting with Sharon by the swings with some library books, helping her finish her reading lessons. And since she lived down the street from me, I went to her house on many occasions to work together on homework.  Sharon was in the same classes with me all the way through high school and accommodations and modifications were made for her long before the law required it.

Sharon popped into my mind today because I’m home visiting my parents and am sitting outside looking at the old schoolhouse  (Gibbsville Elementary School, 2016).

GibbsvilleSchool

My task for today is to figure out how to advocate for a student who uses AAC (SWUAAC) in order to help a school administrator decide IF this SWUAAC will be accepted into their school. It is a small, private school that prides itself on their professional standards, and they have never had a student enrolled who uses an AAC system.

I’ve had several phone conversations with the administrator who is skeptical about the communication and academic abilities of the SWUAAC.  Plus, he’s “concerned” that the other students would be “held back” in their education because of the SWUAAC. I was prepared for these concerns since I’ve heard some version of them for 30+ years.   I provided the administrator with the “objective data” he insisted upon that documented the communication and academic abilities of the augmented communicator.   I’ve described all of the SWUAAC’s communication strategies, and outlined the accommodations and modifications used to help him complete academic requirements. He’s been sent video testimonials from teachers and peers from the student’s current school, attesting to the benefits they derived from having the SWUAAC in their school.  And since he wants objective research, not “subjective, emotional pleas” (his words, not mine),  we’ve sent several articles about the benefits to all students when children with disabilities are included in general education classrooms.

But the administrator is NOT convinced. He’s read through all the information and watched the videos, but “from his personal experience,” still doesn’t believe that it is in the best interest of the SWUAAC to attend his school.

What “personal experience” has this administrator had which has so negatively colored his attitude about inclusionary practices?   I don’t know.

I’m just grateful that my “personal experience” taught me that inclusion is the standard we aim for with all students.  And I hope that for the students today who are sharing classrooms with children with disabilities, that when they become school administrators, they will say, “Welcome to our school. From ‘my personal experience,’ I know this is going to be great for everyone!”

“Yes, He Could Say ‘Vagina’ If He Wanted To”

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My last two blog postings (June 25, 2016: “Seeing is Believing;” July 1, 2016: “Becoming America’s Next Top Modeler”) have told the story of Velma, a caregiver at an adult residential program. One day, Velma was exploring the Unity144 vocabulary in the Eco2 and she discovered words for female body parts.  I wasn’t present for this revelation, but apparently it was surprising enough to find these words in a male client’s device that it warranted mentioning it to a supervisor who then mentioned it to a program coordinator, who then saw fit to send me an email asking, “Do you know how those words got in his device?”  The example word in the email was “vagina.”

I took a deep breath and imagined the possible scenarios that happened. Were they shocked at hearing the word “vagina?” Were they concerned that the male client was adding the words himself, suggesting a level of sexuality that wasn’t expected or condoned? Did they think someone else, besides the client, the family, or me was adding vocabulary to the device?   Did they want me to delete the words from the device?

This isn’t the first time that I’ve gotten an email or phone message from someone “concerned” about vocabulary in an AAC device – whether those words were sexually-charged body parts or vulgarities.   I couldn’t ignore the email, but with issues like this, it is better to be simple in an email or voicemail response, and save any further explanations until you can meet with the person face-to-face.  So, I explained that those words were part of the standard Unity144 vocabulary program (so no one else put those words in there). And, like all human beings, the male client should have access to these words, but also show the responsibility to use them appropriately and respectfully. The only condition to which I would consider deleting the words was if the client requested to have them removed.

The program coordinator’s email response was re-assuring.  No one was offended or shocked; and they all completely agreed that the words needed to stay in the device – at least until I conferred with the client.  We all agree that, “yes, he could say vagina if he wanted to.”

Someday, if you haven’t already, you’ll get that email or phone call too. The best advice I can give you is: don’t be shocked; “vagina happens.”

Becoming America’s Next Top Modeler

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In my last blog posting (June 25, 2016; “Seeing is Believing”) I told the story of the caregiver (I’ll call her Velma) who saw me doing modeling with a client and wanted to learn how to do that.   We collaborated to make a plan for learning how to model and wrote it out on a poster board, entitled “Becoming America’s Next Top Modeler.” Our 10-week plan is simple.   We picked out 10 activities that will take 15 minutes or less time. They are the kinds of things that the caregivers normally do with their clients.  We “scripted” out each activity and came up with things she could say.  As her “coach,” I made the visual support materials that she needed to select the Minspeak icon sequence for each word.  To start, all she had to do was match pictures and she was modeling.

Week One: Be Friendly (Every day, ask two or more questions; and give at least 1 compliment.)

  • Questions:
  1. How are you doing?
  2. How are you feeling today?
  3. How was your night?
  4. What are your plans for the day?
  5. What can I do for you today?
  6. What’s new with you?
  • Compliments:
  1. How look full of life today.
  2. How look very good today.
  3. I like talking with you.
  4. You are the favorite part of my day.
  5. It always makes me happy to see you.

Week Two: Keep Him/Her Talking (Have client pick a topic to talk about. You make comments or ask questions to keep the conversation going.)

  • Comments:
  1. That is interesting.
  2. That’s cool/exciting/sad/good/bad.
  3. Tell me more about that.
  4. I don’t understand.
  • Questions:
  1. Who are you talking about?
  2. When did it happen?
  3. Where were you?
  4. How come?
  5. Why?

Week Three: Family Talk (Use the script to ask questions about his/her family.)

Week Four: Read the Newspaper (Use the script for newspaper reading.)

Week Five: Check Email (Use the script to help the client check his/her email.)

Week Six: Make a To Do List (Use the script to talk about things client needs people to do for him/her.)

Week Seven: Tell a Life Story 1 (Ask the client to tell a story from his/her childhood. Use the script to ask life story questions.)

Week Eight: Tell A Life Story 2 (You tell the client a story about your life. Use the “I Have A Story to Tell You” script with lead-in phrases.)

Week Nine: YouTube Time (Watch a YouTube video. Use the Video Watching script.)

Week Ten: Party Time! (Talk about Becoming America’s Next Top Modeler, what you learned, and how helpful it was to the client. Celebrate your success. Count the words you know how to say without a script!)

Velma is doing pretty well on her journey to becoming America’s Next Top Modeler. Initially, she was incredibly nervous about touching the device and embarrassed when she couldn’t match the pictures from the visual supports to the pictures on the Unity144 program. But, after a couple of days, she overcame her nerves and knew the location of all the pictures. By Thursday of most weeks, she doesn’t need the visual support materials any longer to model the scripted questions or statements. By week four, she was starting to deviate from the scripts because she had learned enough words to be independently generative. For example, once she knew how to say all the /wh/ words, she could start asking new questions, using at least a /wh/ word in the beginning.

I’ve been gone for three weeks. When I get back to Florida, I hope Velma has finished weeks seven, eight, and nine.   Our plans are to have a celebration party together in Week Ten so that I can crown her (LITERALLY), America’s Next Top Modeler.

Seeing is Believing

“Seeing is believing” and “actions speak louder than words.”

I was reminded of those sayings recently when I was working with an adult in a residential facility. For the past 11 months, the facility has been undergoing massive renovations.   My “therapy” space is a front porch. It’s not a bad setting on a nice, Florida day. We have a bird’s eye view of everyone coming and going, most of who want to stop and chat for a minute – making for a natural way to practice conversation and language skills.

If I need to work indoors (on blistering hot or stormy Florida days), the only available space is a corner in a “great room,” where the day activities and laundry has been relocated during renovations.   Washers and dryers are running, a radio is playing, and 30 residents have been smushed into an activity space better suited for 10. Not the most ideal therapy setting.  That was the situation in which I found myself.

Because it was nearly impossible to hear the client’s speech output, I did the only thing possible. I cozied up to him and we did our entire conversation through his Eco (SGD). I spoke to him using his Eco and he spoke back to me – all with the speech OFF because we didn’t want to add to the cacophony around us. I would make some verbal comments or give him an instruction every now and then, but basically, it was a completely augmented conversation.

I confess that I had to revert to spelling every now and then because I didn’t know the Unity 144 code or navigational path for a word on a page or in a row, but that was a learning opportunity for both of us. I either asked PDC to show me the code (if he knew it) or we put the word on a list to work on together

After about 45 minutes, one of the caregivers came up to us and said, “I’ve been watching you talking with PDC. I can’t believe you can talk to him on his device. That’s really cool. He talked so much more to you than he ever talks to anyone here.  Could you teach me to do that?”  (I wish you could have seen me do my happy dance.  Now I’m teaching her to model, but that’s a subject for upcoming blogs entitled “Becoming American’s Next Top Modeler” and “Yes, He Could Say ‘Vagina’ If He Wanted To”).

I’ve done a bunch of training at this adult center over the  years, always including “modeling” as a topic.   We all talk about doing modeling, but, if you had too, could you sit down for 45 minutes and carry on a completely augmented conversation?  Maybe that’s the first step when training someone else to model on an SGD.   Attitudes will change when you employ the strategy of “seeing is believing,” and “actions speak louder than words.”

Words of Encouragement

I saw someone this past week that I haven’t seen for many many years. His name is Ben (not his real name).   Ben is one of the kindest men that I’ve ever met. He has moderate to severe cognitive challenges, along with cerebral palsy, but his heart and spirit isn’t the least bit impaired.

I met Ben in 1986 when his parents brought him for an AAC consultation. He had just gotten his first AAC system (a Touch Talker) and they needed help developing a custom program for him.  I immediately connected with Ben. I think that was because we were born 1 day apart.  Two years later, Ben moved to a residential and day program 20 miles north of Orlando. I had just started providing AAC services for this program.

I have two powerful memories of Ben.   The first was when we went through the process of getting him a new AAC system (a Vanguard). He had a pool of money that was managed by someone outside of the family. This financial manager assured us that she would handle the funding for the Vanguard from his fund.   So, we did all the paperwork, put in the order with Prentke Romich Company, and waited for her to pay the bill. And we waited and waited and waited. Eventually, Ben and I got the bad news that the fund was depleted and the manager was under investigation for fraud and embezzlement. I was livid, and didn’t hold my tongue in front of Ben. In my personal journal from that day, I have it recorded that Ben said, “No money. Money all gone. Bad. She do wrong. She say sorry. You mad not more me. Make sick you.  Make okay God.”  He was telling me that he knew she had taken his money and he knew that it was wrong. But she was sorry. So I shouldn’t be mad anymore for him. And getting mad would make me sick, while God would make everything okay.”  I was taught an important spiritual lesson about forgiveness and trust.  (And Ben got a new Vanguard within a month.)

My second vivid memory is from when I sat and prayed with him at the hospital when his wife was in intensive care. Ben knew he didn’t need his AAC device for God to hear him pray, but he wanted other people to hear him and be encouraged.   I recorded in my journal one of his prayers for his wife when she was in the hospital, which went, “Jesus love Cathy more more more me. You know way good.” I heard it as a prayer of submission, with Ben saying that he knew Jesus loved Cathy much more than he did; and he was submitting to God’s good and perfect will and way.

We had just submitted for funding for an Eco when Ben had his own traumatic health crisis. It arrived while he was still in the ICU, but I got everything set up and hoped for the best.  The family wasn’t hopeful, so they came and picked up the Eco and thanked me for my 20+ years of helping Ben.

I lost track of Ben when he was moved out of the area to a specialized hospice center. I assumed he had passed, so when I saw him this past week, I was thrilled. He’s moved into a care facility for the medically fragile, and they were taking a community outing to visit friends at a day program (where I go for 4 hours a week). Using his Eco with my original programming, we had a wonderful reunion.   I asked his permission to write this blog about him and asked him what he would want to say to people. He said, “all good all time. God good all time.”

Thank you Ben for your words of encouragement. You have been a gift and teacher to me.

Be Formidable

Today is my Grandmother’s birthday. Born in 1904, she would be 111 years old. Growing up, my grandmother lived across the street from us.   I wouldn’t say that I remember my Grandmother as being “grandmotherly,” rather, I remember her as being a straightforward, no nonsense type of woman. She had a head for business and finance, managing a successful family cheese plant in Wisconsin.  (Quick Advertisement for the family business = Gibbsville Cheese Company, http://www.gibbsvillecheese.com).

Gibbsville Cheese Plant over the years.

Gibbsville Cheese Plant over the years.

Grandma Van was a formidable woman in the best sense of the word – inspiring respect through being capable, strong, and excellent.  I like to think that I have some of my Grandma Van in me.

Some of the situations I’ve been in as a “seasoned” SLP in AAC have required me to be formidable.

  • I’d like to believe that being a little “formidable” helped me when interacting with traditional SLPs who thought AAC was a passing fade.
  • I’d like to believe that being “formidable” was to my advantage when challenged by administrators who thought the most severely disabled children on my caseload weren’t worthy of expensive AAC systems.
  • I’d like to think that being a bit “formidable” was a turning point in conversations with medical doctors who were hesitant to prescribe AAC devices.

There will always be challenges we face as AAC professionals.  Sometimes, it requires us to be formidable.  I’m going to channel my inner Grandma Van and give some grandmotherly advice.

  1. Be capable. Develop your skills and abilities to work with people who use AAC. Learn, practice, listen to others!
  2. Be strong.   Do what you know is the right thing to do for children and adults who use AAC.
  3. Be excellent. Strive to do your best for people who use AAC. Don’t settle for “good enough” practices.

Thanks Grandma Van! And Happy Birthday.

Elegant Semantic Systems

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When I was making my first communication boards (mid 1970s as a graduate student), no one was commercially selling pictures to use on a communication display.   Since I can barely draw stick figures, I had no option but to hire someone to draw me pictures. I found a high school kid with great artistic ability and gave him a list of about 200 common words (ironically those words today would be called core vocabulary) and he started drawing pictures, asking for my input when he was stuck for an idea.  It started me on the road to thinking about pictures and how to represent and organize language for people who use AAC.

In 1978, I discovered Blissymbols. Blissymbols appealed to me because they were drawn with systematic rules based on Bliss characters. At first glance, many are intimidated by Blissymbols, but I saw them as a semantic alphabet. Just like with the 26 letters of the alphabet, when you learn the rules and system of Blissymbolics, you are handed a strategy for not only interpreting a Blissymbol, but a methodology for teaching language and symbols to children with developing language. It was elegant to me and I embraced it.

Basic Blissymbols

For many years, Blissymbols were my first choice for representing vocabulary on a manual communication boards – even after commercially available picture sets were introduced  – even after others encouraged me to use “easier” pictures with the severely challenged children on my caseload.   I liked how learning Blissymbols helped the students connect concepts into semantic networks. I believed that semantic networking supported language comprehension and cognitive organization. I witnessed the power of semantic networking on the ability of students to recall and produce diverse vocabulary. I heard students using language beyond the expectations of most people. Simply put, I was sold on the elegance of an AAC system that was semantically based.

But, even using Blissymbols, I still had to deal with finding space on an AAC system as a child’s vocabulary and language grew. More words – another symbol – another page. Then even more words – more symbols – and more pages. And as the number of pages grew, I had to increasingly help my students find their words. We were taking giant steps forward adding vocabulary, but being pushed two steps backwards as it became more and more challenging for them to navigate their systems independently.

Then came Bruce Baker and Minspeak®!

MInspeakBRB

The official name of the approach that is commercially called Minspeak® is Semantic Compaction™. I was intrigued. Semantics – I knew what that meant. Compaction – hmmmm?

Bruce Baker, the inventor of Minspeak, came to Florida and I saw first hand, from the man himself, how a Minspeak system worked. A small set of rich, multi-meaning pictures are provided to an AAC user in a speech generating device. (Remember the Touch Talker and Light Talker?)  These pictures are combined into short sequences to code words, phrases, or sentences.   Language was semantically encoded and packed (compacted) with a small set of pictures. No more behemoth communication books or unwieldy multi-level communication displays. I could use a small collection of pictures – richly packed with meaning – and use them to code language.   I wanted to try this out for myself.

I could see how it worked and I made graphic organizers (which I called Family Trees) to visually show the semantic network and vocabulary codes. Families, teachers, paraprofessionals and even speech-language pathologists saw how language was semantically organized and coded using Minspeak®.

Book Family

That was 30 years ago. Every day in 2015, I witness how Minspeak helps students connect concepts into semantic networks. I witness how the semantic networking of Minspeak supports language comprehension and cognitive organization. I witness the power of semantic networking on the ability of students to produce diverse vocabulary. I witness students using language beyond the expectations of most people.

Minspeak is an elegant system that is as fresh and exciting to me today as it was in the 1980s. I’m so glad I was open-minded and willing to test and see if it would work. It did! And it changed the past 30 years of my life and the lives of countless augmented communicators.       Thanks Bruce Baker!

The Symbol Wars

To the best of my memory, my friend Rena was the first person that I heard use the term “symbol wars” to describe the professional discussions about pictures used in AAC systems to represent language. Over the years, these discussions have focused on defining characteristics of the pictures (transparent, translucent, opaque, sets vs. systems); describing picture assessment protocols for selecting the “best” picture to use for a person; outlining a hierarchy of representational methods; and critiquing picture and symbol systems as to their guess-ability versus teach-ability.

Most of these symbol war skirmishes were conducted on the battlefield of research and theory, stimulating many university dissertations and journal articles. I suppose, it was all part of the growing pains of a new field of practice. Teachers, parents, and therapists were making communication boards and if you purchased an AAC device, it came devoid of any pre-stored vocabulary (other than a few, such as the Handivoice 110, which represented vocabulary with printed words and letters).

The symbol war shifted with the invention of Minspeak! This was a whole new amazing paradigm, for representing and organizing vocabulary on an AAC system. It channeled our discussions about vocabulary, pictures, and organizational paradigms in a new direction – a small collection of multiple meaning pictures used systematically in short sequences (a lot like the 26 letters of the alphabet) vs. a set of single meaning pictures which grows and grows in number as more words are added to the AAC system.

In recent years, included in the discussions about learning and using pictures in AAC is the concept of motor plan. The observations of many astute people is that the most effective and efficient AAC communicators have become automatic their motor plan. And that the path to motor automaticity is having a unique and consistent motor pattern for each word in your AAC system. AAC users who are highly automatic no longer attend to or even need a picture display on their AAC device. They are both linguistically and motor-ically automatic, thinking only about what they want to say and not how to say it.

I agree that automaticity of communication is dependent on execution of a motor pattern.  But my nagging question is this: In the PROCESS of learning to communicate, what is the role of the picture?   Does the picture matter? Or can all learning to communicate be done through the learning of a motor plan? Could I use any picture on an AAC system and any organizational strategy because kids will accept the picture and use the picture in a motor plan if you model, model, model ……and guide their motor, motor, motor movements.

I don’t know the answer to those questions. What I do know is therapists and teachers caught in the symbol wars used to stress out about selecting “the best picture” for an AAC system. And now, when they learn about motor automaticity, they stress out over the idea of changing any arrangement of pictures, or having an AAC device with one arrangement of pictures and a backup system with a different arrangement. They generally ask, “If I change the motor plan, or have two motor plans, will the child no longer be able to communicate?”

Drag Queen Display

To address the question of “the best picture” and “it might not matter WHAT picture you use,” a colleague created The Drag Queen display as a banner for the new symbol wars raging today. (A modified version of the Pixon 50 Core Board.) We know the above questions are important and need to be addressed, but we don’t want to lose our sense of humor as we search for the answers.

So, when you’re deep in a symbol war battle, visualize the drag queen display. And remember, like a drag queen, things can get a little exaggerated and often humorous. But thinking out of normal stereotypical AAC practice is a good thing to continue to move the field of AAC forward.

I Love October

October in Florida is fabulous. It’s my favorite month. The weather has finally cooled off and the humidity no longer makes everything go limp or become soggy. I love October because doing therapy outside is now bearable. Can’t you just imagine sitting on a shady porch in an Adirondack-style rocking chair. (Infinitely nicer than many of the less-than-desirable spaces to which I’ve been consigned.)

Porch Therapy

The adults I support love sitting outside near the main entrance of their residence – close to all the in-and-out action! Familiar people swing by to say “hello” and visitors stop for a minute or two for a friendly chat. The communication partners are real, the topics are natural, and the quiet moments are natural.   It’s an ideal atmosphere to work on conversation and discourse skills.   We practice greeting, parting, making compliments, asking questions of others, and, of course, turn-taking.  But without the stress of expectations that come from sitting in a therapy space.

We are sitting outside in the rocking chair in the fresh October air …. no longer The Therapist and The Client. We are Two Friends, having a lovely chat on the porch.  Porch Therapy!   What a lovely way to work.

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