AAC Takes a Family Vacation

Our family just returned from a fantastically restorative road trip to Terlingua, Texas.  Depending on whether you encounter an ice storm in Oklahoma in the middle of the night (as we did on our return trip), the drive from Avon, Ohio is anywhere between 27 hours and 31 hours with plenty of stops for gas, meals, restroom breaks and much-needed stretches. We logged 4,200 miles in two weeks. I’ve been doing this drive since I was eight weeks old when my dad first discovered what’s become my favorite place on earth – Big Bend National Park.  This was the first time we made this journey with the kids as two adults and it was very special to me. I can’t wait to get us all back there!

After arriving home from this trip (and getting a really good night’s sleep), I started to think about how many miles Mateo’s AAC devices have traveled with him over the years.  I have to wonder whether we introduced people on this trip to AAC for the first time.  Let me tell you, Terlingua is about as isolated and rural as you can get.  It wasn’t that long ago that it boasted a one-room schoolhouse for grades K-8. High school students still travel more than three hours roundtrip each day to get to their classrooms.  I have to wonder what special education looks like in Terlingua. As an SLP, I’ve often asked myself whether I have a colleague down there providing speech and language services to children who need them.   I sure hope so.

But I digress.

I thought that in this post, I’d share a little about what AAC looks like for us on the road.  We’ve always found that road trips are beautifully conducive to great conversation. I think I’ve mentioned this before, but it was imperative early on that Mateo learn to communicate with his device in the car.  When we were relying on sign language, I nearly ran off the road DOZENS of times attempting to discern his messages while driving.

And let me tell you, that guy is the best co-pilot. Even in the middle of the night, when everyone else is sound asleep, Mateo rarely nods off. He chats up the driver on topics ranging from his football playoff predictions and favorite baseball players to his thoughts on the current president and movie producers.  During the night, he dims his Tobii Dynavox screen and lowers the volume so its glow doesn’t distract the driver and he doesn’t wake the rest of the family.

Below are some of the many ways we incorporate AAC into our vacations. We don’t think about any of this anymore, mind you. It’s just living.  It’s part of our crazy life. But in those early days, it took a lot of planning and modeling.

Always ready to talk

We make sure that Mateo’s Tobii Dynavox is ready to go by utilizing a converter in the car that allows him to charge the device on long drives.  He ALWAYS has his device with him.  At Big Bend National Park, he hiked rugged trails with his device over his shoulder.  He loved introducing himself to the friendly hikers we met along the way. He always has a back-up device at-the-ready. On this trip, this included his iPad with the companion app on it, as well as his iPhone with Assistive Express on it. We always have a fully charged portable iOS charger on hand too – just in case.  To some, this might seem a bit overkill, but we don’t like to take any chances. Mateo is very fortunate that he is able to access an array of devices easily and that he is able to choose whatever mode of communication is best for him at that moment. Once we arrive at our hotel room or vacation home, we immediately designate a spot where the devices are charged and ready for use.

Getting help

At restaurants, Mateo asks servers about ingredients due to his food allergies and orders his meals. He asks for directions and help when he needs it.  He buys tickets and makes purchases.  He never forgets to thank those who provide assistance.

Planning activities

As a family, we like to discuss what’s on the itinerary.  He talks about his preferences and proposes suggestions on what he’d like to do. He protests when someone suggests something that doesn’t interest him. He negotiates when he thinks a compromise can be met. 

Board games

We enjoy playing board games.  Our family is pretty competitive and Mateo is no exception. There is never a shortage of trash talking and cheerleading. We like to travel with games to enjoy in the evenings.  At hotels and resorts, we like to look for a library of games that can be borrowed.

Fun on the road

We often play games on the road to make the miles fly by faster.  Here are some of the games we’ve played over the years:

  • I Spy – Players try to be the first to locate items belonging to a category – animals, car models, restaurants, license plates, ballparks, and whatever else we find interesting along the way. We’ve also played I Spy to search for items that begin or end certain letters or sounds (i.e. words that begin with /s/ sounds) and to search for items by function (i.e. places you can eat).
  • Story telling – We work together to craft ridiculous stories, with each family member contributing a sentence of the story on their turn. No one ever agrees on the direction the story should take so the result is usually crazy and disjointed, but who cares?  For example:
    • Madeline: There once was an evil stepsister named Jill.
    • Mateo: She owned a snake.
    • Manuel: She liked to take her snake to school every day.
    • Tina: Her teacher was terrified of snakes.
    • Madeline: During math class, the snake slithered out of the Jill’s lunchbag.
    • Mateo: Jill didn’t notice.
    • Manuel: But there was a boy sitting behind Jill and he did notice.
    • Tina: He just sat there to see what would happen.
  • Starts with/Ends with – Given a category (such as animals), the first player names a word. The next player has to name a word that begins with the sound the first word ended with. The next player contributes a word that begins with the sound the second word ended with. And so forth.  The game continues until players cannot name any more words and a new category is started. For example:
    • Mateo: horse
    • Madeline: snake
    • Manuel: killer whale
    • Tina: lemur

Discussing the route

Mateo likes to know what’s on the route when we’re on road trips and he proposes stops he’d like to make along the way.  He enjoys taking in all the billboards and talking about what he sees. He tells us about the ballparks that are in the cities we pass through and their baseball teams’ records. We can easily persuade him to search for information about points of interest along the way and share what he learns.

Talking to strangers

I know I’ve written about this before, but Mateo has never met a stranger and loves to meet new people.  He happily introduces himself to other restaurant guests while waiting for tables, for example. He likes to find out where people are from and which sport teams they cheer for.  He doesn’t mind stirring things up by starting a conversation about politics or trash talking while watching a football in “enemy territory.” Collectively, the rest of us are introverts, but not Mateo.  We’ve met some really interesting people because of him!

Getting creative

Mateo has an amazing imagination and an abundance of creativity. On this trip, he began working on a parody of Taylor Swift’s song Welcome to New York entitled Welcome to Big Bend and a poem about snakes.  With all the distractions of video games and movies left behind, Mateo had more time to drum up these projects. We look forward to watching these unfold in 2019.

On an unrelated note [but not really because my worlds collide in magical ways]…

Spots are still available for the three-day workshop with Drs. Karen Erickson and David Koppenhaver entitled Comprehensive Literacy Instruction for Students with Significant Disabilities and Complex Communication Needs. This event will be offered in Cleveland, Ohio March 11-13, 2019.  This course focuses on conventional literacy instruction for students with moderate to significant disabilities. The presenters will guide participants in learning how to provide daily comprehensive literacy instruction that includes word study, self-directed reading, reading comprehension, and writing.

Course participants will examine student work samples, videos of classroom instruction, methods of instruction, and theoretical frameworks supporting universal literacy.

The course is open to any and all interested educators and related services personnel concerned with supporting communication and literacy in these students. Parents, consults and administrators are encouraged to attend.

Register before January 15th to receive the early-bird discount.

Here’s the link: https://campalec.regfox.com/complit-march2019

Mateo Talks AAC

Over his icy cold Christmas break, Mateo had a lot of time to ponder things.  One day, he came downstairs and asked to talk to me about something that’s been on his mind.  He told me he’d like to talk to people about what it’s like for him to use an AAC device as his voice.  When I asked him to tell me a little about what he had in mind, he said he’d like to speak at a conference on the subject.  Whoa, I thought! Don’t get me wrong. That’s a FANTASTIC idea for down the road.  However, I suggested we need to take one small step at a time.  I asked him to think a little more about what he’d like to share and then we’d figure out the right platform for him.

Again, he reiterated that he wants people to know what it’s like for him to use AAC every day as his voice.  He wants “normal” people — particularly children — to better understand his perspective.  He also wants to encourage younger, less experienced AAC communicators.

Now, at this point, I want to share that Mateo is starting to step up as a mentor to younger children who are just beginning their AAC journeys.  He recently spent some time visiting with a young boy who’d had his device for a few months.  Mateo visited this boy’s classroom and talked with him about some of their mutual interests. Mateo also spoke with the student’s teacher and speech-language pathologist about how he learned to use his device over time.  This mama was very proud. For many, many years, Mateo has looked up to other brilliant young people as they transitioned from novice communicators to confident, wickedly funny adults tackling new adventures in college or at work.  Now, Mateo is in a position where he can encourage and support children who are going through ups and downs of their own.  I think that’s amazing.

After some brainstorming, Mateo said he’d like to begin sharing some videos discussing issues related to AAC and his experiences.  He decided on his first topic and, to help him organize his thoughts, he asked me to interview him so he’d hit on the points he wanted to address.  We just posted our first project today.  He’s pretty excited about it.  We hope you enjoy!

[Maybe it’s time for him to start his own blog.]

Setting AAC Goals: Please And Thank You

Can we please stop expecting kids who use AAC to end every request with “please”?  I’m talking about those emergent communicators who are just learning that their voice empowers them.  I’m referring to those beginner communicators whom we are desperately trying to move beyond requesting “goldfish please.”  The goldfish may be hugely motivating, but saying “please” — no way!  Although politeness is admirable, if you push for “please” at this point, you may end up with overgeneralization due to a lack of understanding of that concept as new core words are introduced.  That’s when you hear things like “I see goldfish please” on a fieldtrip to the aquarium.

We often get hung up on increasing mean length of utterance (MLU) before it’s developmentally appropriate.  Let’s think about Brown’s Language Stages.  If a child is using just 75 words (such as go, help, more, stop) and speaking in single words, he’s at Stage 1 (MLU: single words).  When he says “more” he may really be shouting “Give me more right now!”  He speaks single words to direct another person’s actions, express negatives and make requests. We can use aided language input to model extended phrases like “want more,” “I want more” or “give me more” to teach this beginning communicator how to sequence words meaningfully. I wouldn’t demand “please” just yet.

Now let’s look at Stage 2 (MLU: 2.0).  This child is putting 75-200+ words into 2-3 word phrases, but still producing a lot of single words.  He’s added some new words to his repertoire, such as “need” and “all done.”  He uses some fringe words, like “milk” and favorite toys such as “ball.”  This child is directing another person, expressing negatives and making requests by combining words with phrases like “want more,” need help” and “want that.” Yes, you could begin expecting “please” but there are SO many other wonderful, powerful core words out there!  I’d still wait before demanding it.

At Stage 3 (MLU: 2.75), things get really exciting!  This child has a vocabulary ranging from 200 to 1,000 words and is beginning to use morphemes, the smallest units of meaning.  Phrases and sentences are 2-3 words in length. Utterances might not be grammatically correct, but they really pack a punch.  The child is communicating with pronouns, negatives, prepositions, simple past tense and plurals.  He might say things like “he going,” “I coming in,” “my trains,” “she stopped” and “look it going.”

When a child reaches Stage 4 (MLU: 3.5), he’s using 1,000-2,000 words to produce utterances like “I fell down,” “don’t like,” “mommy’s drink,” “what is it?” and “I saw train.”  He’s asking yes/no and simple “wh” questions and experimenting with irregular past tense verbs and possessive endings, as well linking verbs such as “is” and “are” correctly.  He’s using adjectives to describe things.

At Stage 5 (MLU 4.0), the child is using 2,000-3,000 words–including the articles “a” and “an”–and acquiring new words all the time.  He’s beginning to use verbs that end in “s” for third person regular present tense and has generally figured out the concept of past tense, using irregular past tense verbs to describe things that have happened.  Utterances might look something like this: “mom’s car broke,” “dad was helping” and “he plays a game.”

When a child reaches Stage 6 (MLU: 4.5+), he has 3,000+ words in his vocabulary.  He is able to use all parts of speech and segment words into the correct word order in sentences.  He is producing complex sentences with conjunctions like “if” and “because” and can pose negative questions.  Examples of sentences at this stage include: “I needed you to fix it,” “She’s afraid because it’s scary,” “That’s the folder you put it in” and “Where’s some food I can eat?”

Let’s go back to those early stages of communication where I’m often asked to help move children beyond using single words and requesting only.  I think that’s where we often get stuck because requesting a favorite toy or snack is so motivating!  But given consistent aided language stimulation (model, model, model!) and new communication objectives, children gradually see the power of other words.  For example, although we parents and teachers might not enjoy experiencing it firsthand, rejection and cessation are two of my favorite objectives to address using target words like no, not, don’t and stop.  The word STOP is key to self advocacy.  If a child is at the level of single words using the communication device, imagine the opportunities to model expansion of those words:

  • Stop it!
  • Stop that!
  • You stop!
  • I stop!
  • Stop + verb (stop talk)
  • Object + stop (music stop)

Notice I didn’t say anything about “stop please.”  Yes, it’s a possibility, but is it the best word choice in these early stages? I don’t think so, but perhaps I need to work more on my own manners.

There are so many opportunities to work on the word “stop” for the purpose of rejection and cessation and beyond.  Keep in mind that the word “stop” is a powerful word with many meanings and we need to model the use of this word across many contexts and settings.  Here are some ideas:

Stop activities3It’s been my experience that we spend so much time modeling and working to expand the utterances of children who use AAC that we often overlook what we expect their typical peers to say when we pose exactly the same question to them. We forget how we communicate on a day-to-day basis with our friends and family. As a result, we push for longer sentences every time and the end result isn’t always natural.  Let me give you some examples:

Expected Speech2

“Please” isn’t my only pet peeve.  I have another.  We often insist that children insert names into their messages when it’s unnecessary and unnatural.  For example, some teachers insist on being greeted with something like “Good morning, Mrs. Smith” or “Hello, Mr. Jones” while changing classes in hectic school hallways when the other students are not expected to use the adult’s name in a similar scenario.  How often do we greet coworkers by name when we say hello at the coffee pot or in passing in the hallway?

Of course, it’s different when we’re working on attention-getting strategies. Then, it’s entirely appropriate and effective to begin a message with a name.  For example, “Mrs. Smith, I need help” or “Mr. Jones, I don’t understand.” Of course, there’s nothing better than hearing “Mom, mom, mom, MOM!” Helping AAC users grab the attention of their friends and loved ones is fun and hugely rewarding. I recommend encouraging individuals to get into the habit of starting with the name first, then adding their message. That way, the listener is cued in and ready to listen to the rest of the message.

Why do we often demand DIFFERENT speech of our AAC communicators in natural conversations?

Let’s not demand lengthier sentences, artificially padded with words like “please” for the sake of increasing a child’s mean length of utterance.  Instead, let’s help AAC communicators add meaning to their communication efforts with greater detail and more information.  Let’s set realistic goals based on natural language development and model, model, model.  Please and thank you.

Happy AAC Awareness Month!


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?


AAC Awareness Month and Talking to Strangers

Fall is my favorite time of the year.  October is special to all of us because it is AAC Awareness Month and we love to tell people how proud we are of Mateo. Today, his speech-generating device enables him to say exactly what he wants to say to anyone in any environment.  But he’s had to work very hard to be a competent communicator.

When Mateo obtained his first device at the age of 4, we were sure he was the only one who spoke like he did.  Mateo felt alone.  We felt alone.  But over the years, largely because Mateo attended Camp Chatterbox for AAC users, we found a family.  We grew to know and love children and young adults who communicate like Mateo.  Mateo was introduced to mentors who helped him become more confident with his voice.  I wish every child had a mentor.  As a SLP, I encourage my families to network and to reach out to other families traveling this AAC journey.  It’s easy to feel isolated when your voice is so different.

Now 17 years old, Mateo is a confident communicator.  Because he’s able to say anything that’s on his mind, he’s also able to be more independent and on his own in the community.   He’s outgoing and extremely curious. He has no issues striking up conversations with strangers.  My husband and I are both introverts by nature.  Mateo reminds me of my father and big brothers — always anxious to meet someone new, make a friend and tell a story.  As a small child, we certainly cautioned him about talking to strangers, especially when he was still struggling to communicate.  Now, we encourage him to make connections on his own.  It’s still a little scary for me, but I’m so very proud to watch him do this over and over again.  Sometimes, he initiates the conversations and, on other occasions, strangers approach him because they’re curious about how he’s talking or because they have a family member or friend who uses a similar voice.

At Disneyworld, Mateo approached a teen who was waiting in line with his family directly behind us.  A Cavs fan, Mateo couldn’t help but comment on the teen’s Golden State Warriors shirt given his beloved Cavs had just won the championship in a tough matchup against Golden State in the finals.  I watched as the young man responded to Mateo’s initiation of the conversation.  For a brief moment, he seemed surprised and maybe even a little bit uncomfortable.  He recovered quickly and responded with enthusiasm, respect and genuine interest. They had a great conversation about their teams!

In a hospital waiting room, Mateo asked a family sitting beside him where they were from.  He told them about his home town and, before he left, he wished them a healthy day.

But it’s not just Mateo kicking off conversations.  Often, strangers observe us talking in a restaurant or a store and approach HIM.  This weekend, an elderly man walked up to him and introduced himself. This stranger explained that a parishioner at his church recently obtained a similar AAC device and how it’s been life changing.  They ended up discussing their rival high school football teams.  On many occasions, Mateo is approached by strangers who tell him, “My son uses a thing like that!” or “My cousin talks with a computer too.” I think that people are drawn to Mateo because they want to know they’re not alone. 

There IS more awareness of AAC.  Mateo is working to win over new listeners and make people comfortable with his voice every day. I asked him recently what makes a good listener.  Here are some of the things he said:

  • Wait while I create my message
  • Look at me while I’m talking
  • Remember that I’m doing the talking, not my computer
  • If you don’t understand what I’m saying, don’t pretend that you do (I can tell when you fake it)
  • Ask me questions and I’ll tell you more
  • Just LISTEN!

Mateo recently told us he wants to talk to children about his voice.  He’s working to flush out what he wants his message to be and we’ll try to help him achieve this dream.  It’s who we are.  We are an AAC family.

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.

A New Perspective From Our High School’s Newpaper

I didn’t write today’s blog post.  It is brought to you by the November 9, 2015 Edition of the Avon Eagle’s Nest, our high school’s student-written newspaper.  Reporter Alexis Dill wrote this piece about Mateo after interviewing him, our daughter Madeline, two cross country teammates and our awesome athletic director.  His story filled the entire front page! Now, Mateo never intended to inspire.  He just is who he is.  Of course, it’s true that we think he’s pretty awesome.  And, naturally, Madeline is the world’s best big sister.

Avon Athlete Overcomes Adversity, Soars Like an Eagle

When it comes to success, countless factors come into play, and periodic shortcomings are simply inevitable for most athletes. For some people, however, adversity is looked straight in the eye on a daily basis. Some let obstacles define them. Others, like Mateo Moreno, defy the odds.

Mateo, a sophomore at Avon High School, is a member of the cross country team and “sings” the National Anthem at sporting events. Still, most don’t know his full story.

Mateo was born with two disabilities, apraxia of speech and dysarthria, which work together to interfere with his capability to pronounce words and communicate thoughts properly.

Apraxia of speech is a motor speech disorder that disrupts the messages Mateo’s brain sends to his mouth. Because he is unable to move his tongue and lips in ways that will help him say what he means to, what may be complete sentences in Mateo’s head sometimes exit his mouth as gibberish to those listening. This inability to interact effectively can be extremely frustrating for him.

Dysarthria, another motor speech disorder, weakens all of Mateo’s muscles that relate to speech and adds even more complications in his life. Although Mateo has a difficult time communicating with his peers today, he used to not be able to communicate at all.

What allows Mateo to talk today is called a Dynavox device, which functions very similarly to an iPad. It has hundreds of words installed into it: basic words that came with the product and words Mrs. Moreno, his mother, programmed into it to give Mateo more impressive diction.

Mateo communicates by pressing on a word on the screen of his device; the computer says the words and sentences Mateo selects aloud for him. Over the years Mateo has become a wizard; he even mentors other kids who are just beginning to use devices of their own.

Although his device is incredibly helpful, Mateo still undergoes social complications continually. Consider the following scenarios: At a party, something comical transpires, causing the class clown to blurt out a joke; everybody laughs. In English class, the teacher presents a question; a girl raises her hand and is praised for her answer. In both situations, Mateo sits silently. His disabilities take away his capacity for communication thoughts and ideas quickly. More often than not, too much time passes before Mateo’s comments would have any relevance if expressed.

Mateo shared, “Sometimes I feel sad and frustrated because I feel left out. I wish I could talk faster, but people have to wait for me to finish saying what I want to say.”

Adversity causes some people to fall. Mateo rises. What most would consider a serious setback, Mateo uses as an opportunity to expose his inner strength and special talents. This became apparent when Mateo first joined cross country as a seventh grader. In doing so, he and his family faced an overwhelming amount of opposition. Not many believed Mateo could succeed athletically as a kid with two disabilities. Mateo didn’t listen. He fought through the negativity of others and began his high school running career two years later.

Older sister Madeline Moreno, a senior at AHS, believes Mateo has improved greatly since he first started this sport. Seventh grade Mateo was usually found in the very back of the competition. Now, as a tenth grader, Mateo can be found somewhere in the middle of the pack. Madeline says his faster times are a direct result of his improved technique; he pumps his arms more and paces himself better.

A year ago when senior runners Claire Bickley and Julia Koehler learned Mateo would be running at the high school, they welcomed him with open arms. “Running with Mateo gives me such a good feeling. [He] helps us be good teammates with positive attitudes,” Bickley said cheerfully.

Koehler built on that, saying that Mateo pushes his teammates. “Mateo teaches us that a disability can’t stop you from doing what you want to do. If you work hard and put your heart into something, it can be accomplished, no matter what obstacles you are facing.”

Although Mateo’s perseverance as a runner speaks volumes, he does more for the sports world than just run. Using his Dynavox device, Mateo sings the National Anthem before basketball games at AHS. This practice began over two years ago when Mrs. Moreno sent a message to one of Mateo’s biggest fans, athletic director Erich Frombach. Mateo had already sang at All Pro Freight Stadium, home of the Lake Erie Crushers, and Mrs. Moreno, who programmed each word, note, and beat of the National Anthem into Mateo’s device, wanted to know if having Mateo sing at AHS was something Frombach would consider.

Frombach, who approved of the idea right away, shared, “Hearing and watching Mateo sing the National Anthem at a girls basketball game for the first time was one of the best things I have experienced in my career.” The feedback Frombach has received has been nothing but positive: “Everyone thinks it is extremely neat, and when I tell them he also runs for the school, they are even more amazed.”

Mateo doesn’t plan to stop his music career with singing for just one sport; “I am very proud of my Avon football team and would love to sing the National Anthem at football games. I hope to sing at Indians games and the White House one day, as well.” A video of Mateo singing can be found on YouTube, and he has even been featured on the news, broadcasted as far away as Florida.

Mateo inspires his peers, teachers, and strangers, but no one has been impacted as much as his older sister. Madeline says she has complete confidence that she is an entirely different person because of her brother. She has dedicated her life to individuals with special needs and even volunteers at a camp for children with disabilities during the summer. Madeline told EN that without Mateo in her life, she wouldn’t have as much patience as she does or the courage to stick up for what she believes in.

One thing Madeline doesn’t believe in is pitying her younger brother. When given a kind-hearted apology for her family’s situation, Madeline will reply, “Sorry? What do you mean? Mateo is amazing!” She sees him as a person with wickedly-smart humor and courage, not a kid with an unfortunate diagnosis.

When asked what can be learned from her brother, Madeline was quick to mention his contagious optimism. “Never once has Mateo asked, ‘Why me?’ You would think he would, but that kid is tough as nails,” Madeline insisted. She added, “Mateo is a great listener, jokester, student and little brother. Also, I would really like to thank his teammates, classmates and faculty. You guys are so awesome. Everyone is so supportive of Teo; he’s never short of a cheering section.”

Throughout history sports have exposed some of the greatest aspects of humanity, and Mateo is a clear-cut example of the real beauty of athletics and of life. He serves as a model for the rest of the student body at Avon and aspiring athletes all over the nation, and every inspiration’s story deserves to be shared.

Why I Want Mateo To Have A Personalized Voice Of His Own

There are new technologies out there that could help Mateo speak with a voice that is unlike any other.  Blending his own natural voice with a donor voice, like his dad’s, VocalID would create a voice of his very own.  We’ve been talking with him about it.  We want him to make the decision to do it or not.  It’s his voice.  If we decided to pursue it, it would be something he’d use for many, many years. Right now, its price tag is $1000. He’s worrying whether or not that’s too expensive.  I think that’s a pretty cool attitude for a 16-year old.

Speech communicating devices come with a limited number of standard voices. His Dynavox has a total of 37 voice options. This includes male/female, child/adult and a few voices with various accents.  Some of them sound so robotic, they were not even in the running for consideration. In addition to these voices being used in AAC devices, they are also used in voice prompts at ATMs and on automated telephone voice response systems.

Here’s why I think Mateo should choose to have a voice made for him.  This voice would be like no other.  He could contribute quite a bit of his natural voice which would be blended with a donor voice.  His dad is concerned that he doesn’t want Mateo’s voice to sound too much like his voice because he wants Mateo’s voice to be his own. I pointed out that our daughter’s voice sounds a great deal like mine. Mateo’s personalized voice would contain his own pitch, tone, rhythm and loudness.  He could use this customized voice for many years to come on his Dynavox, if he continues to use it, or on an iPad with his same core vocabulary — Wordpower. He’s been struggling emotionally so much lately with a desire to communicate naturally as opposed to using technology.  Don’t get me wrong.  Mateo is a happy guy, but he just wants to speak.  He just wants something to come easily to him. For the most part, I can’t help him with any of this.  This personalized voice would be something that includes a part of him.

In addition to worries about the hefty price tag, we think Mateo is less concerned about having the same voice as many AAC users out there.  He’s the only one in our community who communicates in this way.  His voice is the only one that stands out in a crowded restaurant or at a school assembly.  Here, in our wonderful community, he’s immediately recognized when his voice is heard. The only time he’s surrounded by voices like his own at Camp ALEC, for example, when there are 19 other AAC communicators together for one glorious week.  If Mateo went to a school with other AAC users , he might feel a greater need to differentiate his voice from those of his peers.

We will be making a decision on this in the next week or so while we can still pre-order his voice at this cost.

This technology will help many, many individuals to speak with voices of their own.  It’s not simply about the personalization of a voice.  It’s about improving these voices so that they sound as natural as possible.  Please take a moment to look at VocalID.  Watch the story of how our friend Maeve obtained her voice.  Please consider making a donation to support this research and technology to give voices to individuals who cannot speak.


VocalID image

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.”