Compartmentalizing Communication Doesn’t Work

I’m often stuck in the middle.

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

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

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

Communication cannot be compartmentalized.

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

Simple examples include:

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

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

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

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

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

Let’s change the world.

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

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

We were “above average”

We were “above average”

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

Mateo is an AWESOME communicator

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

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

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

For four days, we were “above average”

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

Mateo is a valued member of our community

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

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.

Lessons learned from Camp (posted on PrAActical AAC)

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

Here is the link to my guest blog:

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

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

Here is the link to Camp ALEC:

https://campalec.wordpress.com

True Inclusion

So there is a push for more and more inclusion these days.  One body of evidence supporting this trend is the pressure placed on intervention specialists and speech-language pathologists, for example, to deliver services in the general education classroom.  Some professionals are uncomfortable with this model and others are diving in head first.  For many, I think, both their enthusiasm and fear place them somewhere in the middle.  The more I think about it, though, the more I’m convinced that inclusion has little to do with where services are delivered or how.

I’ve been watching our son Mateo run cross country for his third season in a row.  His first seasons were spent in the 7th and 8th grades of middle school.  We were encouraged to have Mateo join the cross country team by a principal and our special education director back then.  It didn’t cross our minds for a moment, despite the fact that Mateo has a runner’s body and a whole lot of energy to expend.  We had our concerns, but Mateo was willing to give it a try so we jumped on board.

Unfortunately, no one informed the middle school cross country coach of this plan and she was utterly ill prepared.  Before his first season even officially started, she tried to turn Mateo away from practices.  She said she couldn’t properly supervise the team PLUS him.  She cited a fear of him getting injured (couldn’t any runner get injured?) or getting lost (he is a human GPS) because he’d fall so far behind the other runners.  Suddenly, a team that had been a “no cut” sport for years and years had criteria that had to be met in order for a runner to make the team.  And this same coach told me very clearly that she didn’t think Mateo would be able to make the team.  Well, he did exactly that.  And he proved this coach was wrong on his own. Still, we cited our concerns to our superintendent and director of special education, armed with documents from the Office of Civil Rights regarding inclusion in extracurricular and athletic activities. Truth be told, we always felt that the teachers and administrators were supportive, but having Mateo on the team was simply out of the comfort zone of this particular coach.

The coach insisted he run with an adult aide in races “for safety” despite protests by the entire IEP team, the assistant coaches, and Mateo himself that this support was not needed.  Finally, for the last race of his 7th grade season, he ran solo.  Well, kind of.  Unbeknownst to us until later, the coach had asked a high school runner to accompany him since the IEP team formally determined once and for all that he should run on his own and she still disagreed. But he ran on his own in 8th grade and got stronger and stronger with each race.

Mateo ran for the middle school for two consecutive years, despite this coach, and never finished a race last.  He finished his first middle school race as a 7th grader in 19:20 and completed his last race as an 8th grader on the same course in 13:32.  His finish time improved in every race.  Mateo’s successes didn’t soften this coach in the two years he ran with this team.  I can count on one hand the number of times I witnessed her speak to him.  It was heartbreaking for us to talk to him about the situation.  We were honest and admitted that there are simply people out there who think he is not capable.  We encouraged him to prove to that coach (and anyone else standing in his way) what he can do while acknowledging that we cannot change people.

Despite the role model set by this particular coach, his teammates stepped up.  They accepted him as a member of the team.  We watched as members of his own team encouraged him on the course during races, shouting to him, “Stay with me, Mateo!” as he tried to keep pace or, better yet, “Come on and pass me, Teo!”  We were stunned when runners and family members from other teams cheered for him by name. We often overheard other spectators comment on his improved time meet after meet.

Fast forward to this year.  Mateo is now a freshman and a varsity cross country runner.  He began practicing with his high school team in June.  We learned about a four-night running camp the entire team was expected to attend. When we asked his new coach about it, it was simply assumed Mateo would be there.  It’s true, the coach admitted he was a little nervous about it.  He asked questions about Mateo’s diet, his method of communication and his needs.  But here’s the difference: the coach talked to Mateo about all this.  Together, they made a plan to ensure that camp would be successful for the entire team and Mateo was part of the team. Mateo came back from camp with dozens of pictures of his teammates taken with his iPad, new campfire stories, a pile of unbelievably smelly laundry and a bunch of new friends.

Today, Mateo returned from an overnight meet in Columbus.  He didn’t go on his own only because you can’t keep Manuel away from his races.  Mateo had an entire cheerleading squad made up of his incredible big sister, Madeline, an uncle, an aunt, cousins and extended family and friends who live in the area.  Mateo achieved another personal record, shaving off a minute and a half from his last best time.  He ran his fastest mile ever and finished the 5K race in 23:06. By comparison, he finished his first race of this season in 28:59. He is getting stronger and faster.

He is 100% a member of his varsity cross country team.  He is joined at meals by his teammates.  He’s congratulated by the entire team for his successes and he does the same for the other runners.  He attends team dinners, joins conversations, huddles up with the guys for meetings, pitches in for fundraisers and works his butt off at every single practice so that he can perform better and better with each race. He commiserates with the other runners over sore muscles and bad test grades. They give him a hard time for sitting with 8 girls at lunch every day. He’s just one of the guys.

Today, Manuel told me that he observed Mateo approach his varsity coach and his coach pulled him in for a hug and quietly said, “love you, buddy.”

I think inclusion is a conscious decision.  I think it takes an open dialogue and considerable planning.  I don’t think it’s easy but the pay-off is HUGE for everyone.

On a slightly related note, our director of special education asked Mateo to deliver a short presentation before our school board to give the members some insight into AAC.  Mateo thought about what he wanted to say for a very long time and put a lot of effort into his message.  His speech was open and honest and he delivered it this week with such confidence and dignity. I’m grateful to our school board for listening to his voice.  His words were absolutely from the heart.  Here’s the link:

http://youtu.be/dY3UvMigc3c

October is just a few days away.  It’s AAC Awareness Month.  I challenge everyone to take a moment to imagine not having the ability to speak.  Think about spending just a few hours without talking.  In fact, ditch your paper and pencil too because so many of our children who cannot use their natural voices also struggle for years and years to obtain access to a reliable means of writing too.

Language + Literacy = Empowerment

You know, it’s occurred to me that this blog isn’t at all what I expected it would be. But then, my journey is taking me on all kinds of wonderful twists and turns.

Presuming competence at Camp ALEC

I really can’t find the words to express my excitement over Camp ALEC, which will be offered this summer at Variety Camp and Developmental Center in Philadelphia July 27-August 2 for the first time.   I think it boils down to one over-reaching concept — presuming competence.

All too often, children and adults who use AAC to communicate are presumed to be incapable of learning to read and write.  Quite simply, this is a tragedy.  I cannot image life without printed words.  Literacy gives us access to so much — romance, travel to unimaginable worlds, connection to loved ones far away, life-long learning, employment, independence, and more.  For me, there is nothing more thrilling than diving into the pages of a book or more liberating than firing off a feisty email.  Reading and writing are experiences that many of us take for granted.

Camp ALEC presumes competence.  Literacy activities will be spearhead by Drs. Karen Erickson and David Koppenhaver, internationally recognized experts in the field of literacy and disability studies.  Campers will arrive for the week eager to open books and pick up pens — although they may not look like the books and pens many normally envision.  Campers will work with educators all week to participate in assessments to determine their strengths and weakness in the areas of word recognition, reading comprehension and listening comprehension to help determine which areas require the greatest attention in reading intervention.  Some of our campers will have only basic letter recognition skills and emerging phonemic awareness.  Others are seeking strategies to improve critical thinking skills and expand written expression abilities to prepare them for the rigors of college.  Regardless of their level, they are presumed to have the ability to — and right to — access to the power of written language.  We already have campers registered from as far away as Colorado, Michigan and Ohio.

And it’s never too early!  There is a great deal of reluctance to begin literacy instruction with nonverbal children who are in the earliest stages of communication.  I love this article: http://praacticalaac.org/strategy/literacy-lessons-for-beginning-aac-learners/. It not only drives home the importance of early literacy intervention for beginning AAC learners, but it shares real classroom strategies.

To learn more about Camp ALEC, visit www.campalec.wordpress.com where you can find links to the camp brochure and registration form.  For questions, feel free to contact me at voices4all.tina@gmail.com.