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.

I want to talk with my REAL voice

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Here’s our story:

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

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

Here’s the link:

http://themighty.com/

Lessons learned from Camp (posted on PrAActical AAC)

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

Here is the link to my guest blog:

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

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

Here is the link to Camp ALEC:

https://campalec.wordpress.com

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.