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

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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.

https://www.indiegogo.com/projects/vocalid-custom-crafted-voices#/story

VocalID image

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.