Compartmentalizing Communication Doesn’t Work

I’m often stuck in the middle.

Whether you’re a parent or a professional who cares deeply about a child who uses AAC as a voice, does any of this sound familiar?

I work with parents who complain that the school isn’t doing enough to support their child’s communication growth.  Parents cite bars that are set too low, limited opportunities to practice conversation skills and inadequate time spent on aided language input (or modeling) using the device throughout the school day.  There, the emphasis might be on programming an answer box used to assess the child’s grasp of academic content, rather than mastery of language that permits communication across settings and conversational partners. Teachers are overwhelmed trying to address the needs of too many students and there is limited time to practice “talking” in the classroom.

On the flip side, I also work with school personnel who complain there is little or no carryover at home.  Speech generating devices are returned to school the next day untouched and uncharged. And exhausted parents complain they are just too tired at the end of the day to work on communication after juggling homework time, dinner and personal care tasks — or managing challenging behaviors that place a strain on everyone at home.

Communication cannot be compartmentalized.

It simply doesn’t work for schools to treat an AAC device only as a tool for assessing what a student grasps of the curriculum.  Aided language input must happen across pragmatic functions beyond answering questions and requesting preferred items and activities.  Children need to learn to greet, request information, reject, protest, complain, ask questions, inform and comment.  We know there is so much pressure placed on teachers to provide instruction directly related to the curriculum and to verify understanding.  However, aided language input CAN be provided within the context of that instruction using the student’s own vocabulary.  Time to practice “talking” must be carved in throughout the school day.

Simple examples include:

  • Expect a greeting when entering the room
  • Assign students to take turns making announcements
  • Ask for opinions on everything from lesson activities and reading assignments to the lunch menu and happenings in the news
  • Initiate brief conversation time (think “speed dating”) each morning on various topics (favorite movie, biggest fear, weekend plans, etc.)
  • Send students on errands throughout the school building that require meaningful interaction with various school personnel (provide staff training!)
  • Post a daily question for students to think about while settling in at the start of the school day, allowing time for the AAC communicator to formulate a response
  • Set up barriers that promote asking for help (“forget” to open that milk container or pass out crayons needed for that art project)
  • Using randomized turns (like popsicle sticks with student names pulled from a cup), preselect students who will respond to questions (Tommy, your question will be _____. Let me know when you’re ready to answer.)
  • Formulate curriculum-related questions so they can be answered using core vocabulary on the device while providing a word bank for fringe academic vocabulary (terms like metamorphosis, cumulonimbus and electoral college don’t need to be on a communication device)
  • Model, model, model

It simply doesn’t work when parents say to school teams that they don’t need AAC at home because they know what their child wants, needs or feels. I’m not a mind reader and neither are you, as Dana Neider wrote so vehemently in her blog (http://niederfamily.blogspot.com/2013/07/i-am-not-mind-reader-and-neither-are-you.html). Yes, it takes time to model language on an AAC device.  Yes, it takes time to listen when the words come together slowly.  Yes, it takes time to educate family members, friends and neighbors on active listening strategies.  Yes, it takes time to ask your child to elaborate on what’s said to elicit more language. Yes, it’s faster to present a choice of two (Do you want burgers or pizza for dinner?) than asking an open ended question (What do you want for dinner?). When children are very young, I think it’s especially tough for parents to imagine their AAC communicator on their own–engaged in adventures apart from them–especially when that child is dependent on family for all personal and medical care.

Learning to ask for help, to communicate with confidence and to direct one’s own care is empowering even for individuals who rely on others to have their needs met. I ask parents to imagine sending their child to a camp (like Camp ALEC / http://www.campalec.com).  Would that child be able to tell his counselor that he detests broccoli or has a gluten intolerance?  What if that child is hospitalized and parents had to step away to get some rest.  Would that he be able to tell a nurse he needs more pain medication or is afraid?

Here I am in the middle, which is exactly where I am meant to be — I think — in this crazy world of mine.  Why?  Because I’m standing beside that child who is struggling to communicate EVERYWHERE to EVERYONE about EVERYTHING. When a child is not expected to use AAC throughout the day, every day, I believe we are unintentionally sending a message that we don’t always value that voice. In effect, we are silencing that child in one context or another.

When children are encouraged to communicate in every setting, they gain confidence in making themselves heard. When children watch us communicate using their devices, they not only learn language. They see us embrace their words. When children are encouraged to practice communication with new listeners in new environments, THEY become the teachers and begin to change the world.  It’s all part of the journey that is AAC.

Let’s change the world.

Every AAC journey has its ups and downs. Mateo is no exception.  Initially, he was most comfortable communicating with our immediate family at home while school reported that he was less than eager — sticking with single words and short phrases whenever possible.  As his confidence grew, so did his utterances and his personality, most notably his sense of humor, began to shine.  For quite a while, Mateo was very reluctant to use his Dynavox in the community, refusing to order his meal at restaurants or to ask someone for assistance.  Gradually, he became more and more courageous.  That’s a tough thing to do when you’re the only kid in town who uses AAC as his voice.  Nowadays, he strikes up conversations with people he meets everywhere and he’s singing the National Anthem any chance he gets. He’s still learning how to use that voice of his — aren’t we all?

https://www.youtube.com/watch?v=UFsaMS0mklc

We were “above average”

We were “above average”

I’m sitting on the couch watching the Indians game with Mateo.  He’s been home from the hospital for a week, healing at a breakneck pace thanks to the shape he’s in after running all these years.  We’re all still feeling like we were run over by a semi since his sudden illness, two surgeries and eight days in the hospital.  The relief we’re feeling is tangible.  Now that I can finally breathe again, I want to share some of the things we learned during this period.

Mateo is an AWESOME communicator

Even when he was drenched with sweat due to excruciating pain and could barely move, he was able to tell his doctors about what he was experiencing.  He asked questions about his surgery and hospital stay.  He let us know he felt scared.  This ability to communicate helped ensure he received the right treatment.  And, throughout it all, he thanked his doctors and nurses for his care.

He’s still processing what he experienced and we’re grateful he can talk it over with us.  I shiver when I think about what his life would be like if he couldn’t discuss his worries with us like he does. Here are some of the comments he’s made:

  • “Could I have died?”
  • “Could it happen again?”
  • “What would have happened if I didn’t get treatment right away?”
  • “I was really scared.”
  • “Were you worried about losing me?”
  • “I’m sorry I scared you.”
  • “Thank you for never leaving me alone in the hospital.”
  • “Did I bleed when they cut me open?”

For four days, we were “above average”

He was intubated for four days.  This was due to the fact that his first surgery did not go as expected and the team knew he’d need a second surgery a few days later.  For four dMateoays, he was like anyone else who is voiceless due to a breathing tube.  But during this time, his ability to communicate far exceeded that of most patients under the same circumstances.  While he was very weak and sedated much of the time, he was able to sign and tap on his Dynavox with enough accuracy that we could understand him.  He asked when the tube would be removed and how many days of school he’d missed.  He begged for something to eat and drink and rated his pain.  His team took the time to listen and spoke directly to him regarding his treatment.  More than one nurse told us that Mateo is an easy patient because he had the means to communicate despite his intubation.

Mateo is a valued member of our community

Throughout this experience, we were overwhelmed by the outpouring of encouragement and support he received.  We are so grateful for all those offers to help and for the hundreds of cards Mateo received from students, family, friends, teachers and neighbors.  He received invitations to run with teammates when he’s ready to begin training again and notes from classmates that emphasized how much he is loved at his high school.  Reading through all those messages boosted his spirits and made him feel special.  It also reminded us that Mateo belongs here and we all have so much to learn from him.

AAC – Listen to Me

Let me tell you about something that has happened to me many, many times over the course of my life as Mateo’s mom.  It’s happened when we were chatting in restaurants as a family, standing in line for attractions at Disneyworld and riding on trains and planes.  It’s happened at the Grand Canyon, Cleveland Indians games, monster truck shows, campgrounds, beaches and waterparks.  People are intrigued with how Mateo communicates and he communicates EVERYWHERE.  There is nowhere he goes without his device or, when he needs something that fits in his pocket, he uses his iPod touch with an app on it.  He tells us it doesn’t bother him anymore when people appear to be staring.  I think it used to make him feel uncomfortable because there was a time he was very reluctant to speak in public places, refusing to order his meals in restaurants, for example. Now he proudly sings the National Anthem with his own voice for crowds.  Don’t get me wrong. He wishes he could use his “real” voice if he could, but with AAC he can say anything that’s on his mind.

AAC has been a part of our lives since Mateo was four years old.  He’s attended camps to promote his communication, gain confidence, meet other AAC communicators and learn to advocate for himself.

Before meeting Mateo, many people have said to me that they’ve never met someone who communicates using AAC.  Others have said to me that they’ve never met an individual who is able to communicate as proficiently as Mateo or who could truly communicate anything they’d like to say.  To me, this is still so surprising to hear.  Maybe that’s because we’ve been fortunate to be a part of an amazing extended family all brought together by Joan Bruno and her beautiful Camp Chatterbox.  Maybe that’s because I’m a speech-language pathologist.  Maybe it’s because I’ve met cool kids at Camp ALEC as well.  There are AAC communicators all over the world.  Thankfully, we are not on this crazy rollercoaster ride on our own.

So, here I am on my soapbox again.  Individuals who are nonverbal can only communicate exactly what’s on their mind if they are able to write.  Mateo uses a robust core vocabulary program called Picture Wordpower 100 on his Dynavox Maestro.  But, despite all my efforts to convince him that he’d be faster if he used his core vocabulary, he prefers to spell and use word prediction for the bulk of his messages.  That’s because he can.  Language + Literacy = Empowerment!

I want to show the world how Mateo communicates–and how others are empowered with AAC as well.  He’s given me his permission to do so.  Here he dishes about Camp ALEC in an interview.  We’ll post more talks soon.

Want to show off your mad AAC skills?  Just getting started and proud of those early words?  Let me hear you ROAR!  Email a link to your video to me at voices4all@gmail.com and I will share it.

If you’d like to learn more about Camp ALEC, a literacy camp for AAC communicators offered August 14-20 at Indian Trails Camp in Grand Rapids, MI please visit http://www.campalec.com.

Fringe Makes Me Cringe

Happy Better Speech and Hearing Month. It’s finally May and I’ve been reflecting on what this career has meant to me personally. To those SLPs who have worked with Mateo and helped him accomplish amazing things, I thank you.  To those SLPs who encouraged me to embrace this incredible career and continue to inspire me every day, I thank you.  And to those families who allow me to work with their children, I thank you. I am deeply touched that you trust me and let me be a part of their story.

So, I took a journey into the past again recently–when Mateo was very young and I was a mom still learning about AAC. Back then, I spent hours and hours programming weekly vocabulary and spelling words on his device. For every science unit, I made sure there was a page that contained words like cumulonimbus.  It wasn’t until much later that I realized that back then I didn’t view his Dynavox as a means for him to communicate anything he wanted across his life time.  I did not program his device in such a way that he could achieve spontaneous novel utterance generation (or SNUG). Instead, we were primarily focused on whether he could simply respond like everyone else in the classroom.  Once that unit was done, we often wiped out that vocabulary list to make room for the next one.  We thought we were leveling the playing field by giving Mateo access to the same words as all the speaking children.  Looking back, maybe we were in denial and hoping this was something temporary.

Now I cringe at the mere thought of fringe vocabulary. It makes me absolutely crazy.

AAC devices must be built around core vocabulary, words that we all use all the time every day. We want communicators to create spontaneous novel utterances and they can do that if they have access to these core words. Core vocabularies consist of words identified as being important for an individual to express anything they want to say across activities,  environments and communication partners.   With a few hundred words, a person can say over 80% of what is needed.

We use just 50 words 40-50% of the time
We use just 100 words 60% of the time
We use just 200 words 70% of the time
We use just 400 words 80% of the time

For school-aged children, there is a temptation to customize communication devices and apps like crazy, often with an emphasis on vocabulary that is introduced in the classroom.  The device is then used as a means of assessing a child’s acquisition of these concepts. Children can be given access to fringe and academic vocabulary using a word bank or word wall, if needed.  Better yet, we can model language in the classroom to help children build on their core language communication while still demonstrating their understanding of academic concepts.  It means changing our mindset as communication partners.  As a result, the child will gain more practice in using their core vocabulary and become a more competent communicator.

Let’s contrast two science discussions:

Scenario 1
Teacher to AAC learner: Name the biological process that results in a caterpillar changing into a butterfly.
AAC learner: Metamorphosis (using pre-stored fringe vocabulary)

Scenario 2
Teacher to AAC learner: Tell me about metamorphosis.
AAC learner: Caterpillar change and turn to butterfly (using all core words)

As parents and professionals, we must give children words they can use to communicate anything they want to say every day.  A parent asked me this week, “Do you think he will gain enough speech to be able to express his needs?”  This child is three years old and we’re introducing AAC.  My response: “Maybe, but whether or not that’s the case, that’s not enough for me.  I want more for him. I want him to tell me anything he wants to say.” 

I want to talk with my REAL voice

Every once in a while, just when you think you are sailing on smooth seas on a sunny day with a pleasant breeze nudging your sails along, a giant rogue wave comes out of nowhere and tosses you into an icy surf.

Over tonight’s dinner out with my boys, Mateo told us that he wants to learn to talk with his voice, his REAL voice (pointing to his mouth).  He said that he knows he can do it if he works at it really hard and he knows that I can help him.  Gulp.

He went on to recall that his friend Kevin told him in the 5th grade that he knew that Mateo would eventually learn to talk. That was four years ago.  Mateo also recounted that one of his elementary school teachers told him he’d have to use his Dynavox forever. It turns out that Mateo wants nothing more than to prove that guy wrong!

Mateo is profoundly speech impaired.  At 15, and nearing 6 feet tall, his verbal speech is only intelligible to very familiar listeners and only at the level of a word or two when the context is known.  In the later elementary school years, we made the decision to concentrate his therapy time (at school and at home) on becoming a competent AAC communicator.  Over the years, we’ve tried to tell Mateo that he may always rely on technology to be able to communicate the depth and breadth of everything he has to say.  We never told him to give up on that “real” voice of his, but we wanted to be realistic too.  He’s complained from time to time “I hate having to use technology” and we always told him how grateful we are that this technology is available to him.  Where would he be without it?

The emphasis has always been on his language, literacy and social communication. We’ve seen Mateo shine more than ever before.  He’s been developing very lengthy, complex and grammatically correct sentences to express everything on his mind (or so we thought).  Gone are the days when we constantly have to prompt him to tell us more.  Now, we often joke that we need to work more on developing that filter to prevent him from saying anything that comes to mind.

Here’s the comment that hit me with the hardest force:

“I think that maybe God saw me and said he is going to talk with a Dynavox.”

So I asked him, “What if that was part of God’s plan for you?” and he said, “Well, that makes me feel very sad.”

Next, I asked him to tell me what he doesn’t like about talking with his Dynavox and he explained that he can’t always say what he wants to say.  When I pressed him for an example, he couldn’t give us one. Maybe that was an example right there or maybe this was just a really tough conversation and he needed to take a break from it.  I’m not sure.  Frankly, I was overwhelmed and struggling to keep it together myself.  This will be a conversation that will be continued over time.

The fact that Mateo could express all of this to us in a crowded Mexican restaurant (using his Dynavox, I might add), tells me that he will continue to make connections in the world in any way that he can.  Mateo will continue to prove to every one of us that he has a voice and he will use it.  Maybe we will begin to hear his “real” voice more.  I’m certainly game if he’s willing to work at it.

I am so grateful that Mateo reached out to tell us what was weighing on his heart today.  After all, he’s a typical teenager and he took the time to have a very real, very difficult conversation with us.  And I’m humbled.

Thank you to cross country runner #9 — and to The Mighty for sharing my blog

When The Mighty asked for submissions about strangers reaching out to demonstrate kindness, I knew I wanted to share the story of an extraordinary cross country runner whose simple act of sportsmanship touched my heart.

Thank you to The Mighty for sharing our story and many others. They give me a sense of community and restore my faith in humankind every day.

Here’s our story:

http://themighty.com/2015/02/dear-high-school-cross-country-runner-9/

If you like to smile and read about good people doing simple things for others, take a moment to follow The Mighty. I don’t think you will regret it even for a moment. Kindness matters. Every day.

Here’s the link:

http://themighty.com/

Lessons learned from Camp (posted on PrAActical AAC)

Wow!  What an honor to be invited by PrAACtical AAC to submit a guest blog about Camp ALEC!  Many, many thanks to Carole Zangari for letting me share my experiences and some of the many lessons I learned.  I included stories from the amazing week spent last summer with campers and educators who traveled from all over the U.S. and Canada to be a part of our first year.  You’ll also find some tools, such as spelling boards and information on helping kids get published on TarHeel Reader.

Here is the link to my guest blog:

http://praacticalaac.org/praactical/aac-goes-to-summer-camp

Applications are coming in for Camp ALEC 2015, which will be offered August 9-15 at the beautiful barrier-free Indian Trails Camp in Grand Rapids, MI.  If you’re hoping to send your child to camp, please get your application to us soon. Adults are also welcome to apply because this camp is NOT just for kids! We promise teachers, SLPs and administrators a week–with literacy experts Drs. Karen Erickson and David Koppenhaver and some of the world’s most spectacular children–that you will never forget.  Educators who have already attended a week-long Level 1 training with this dynamic duo are eligible to apply.

Here is the link to Camp ALEC:

https://campalec.wordpress.com