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.

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

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.