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.” 

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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.

What I learned from camp

It’s been a week since I returned from Camp ALEC.  I’m still trying to wrap my brain around everything I experienced and learned throughout the week.  I do know with absolute certainty that Drs. Karen Erickson and David Koppenhaver are the most amazing educators I have ever met.  I knew they were extraordinary individuals when my dear friend Gina and I first approached them about conducting this literacy camp for children with complex communication needs.  I had seen the impact their work had on my son Mateo when he attended a similar camp in Minnesota for two consecutive summers.  But it wasn’t until I saw them in action that I TRULY appreciated that they wholeheartedly share the same commitment to changing the world as we do.  And I will forever be grateful for this incredible opportunity to learn from them and collaborate with them.

This was the first Camp ALEC and the first camp of its kind offered in the United States. Together, we gathered 15 campers and 14 educators, speech-language pathologists and school administrators from the U.S. and Canada at Variety Club Camp and Developmental Center in Norristown, PA for a week of reading and writing assessment and interventions–plus a typical summer camp experience.   Each camper received a total of 17.5 hours of individual and small group assessment and instruction throughout the week.  The goals of Camp ALEC included building the skills of the adults who participated and determining how the campers like Mateo can be supported in further developing their reading and writing skills during the coming school year.  At the conclusion of camp, parents had an opportunity to have a conference with their child’s educator,  as well as Karen and David, and left with a report detailing the results of their informal reading and writing assessment and instructional recommendations.  Our hope is that parents will share those recommendations with teachers so that they can implement evidence-based instructional strategies that will ensure greater progress in school.

I cannot express the joy I felt watching our campers work with David, Karen and the educators throughout the week.  These amazing children and young adults came to camp ready and willing to work HARD and have a blast while they did it.  Many of our campers had never been away from their families on their own before.  We witnessed homesickness and it broke our hearts.  We tried our best to comfort these kids while learning from veteran camp counselors about tough love.  This was particularly challenging for us “Camp Moms” and we got ourselves into a lot of trouble trying to maintain a balance between nurturing and pushing the kids to ditch their cell phones and embrace the entire solo camp experience.  I am so incredibly proud of every one of our campers!

Throughout the week, I began to question my decision to leave the schools–at least for now–to work in a hospital outpatient pediatric rehab setting.  Truth be told, watching these educators work with our campers often made me wish I were headed back to my own classroom in a few weeks.  But I’ve absolutely loved my new experiences at the hospital where I am working with children before they even enter the school system.  Here, I can begin to help children find their voices earlier!

“If a functional communication system has not been put into place with a child, his only recourse is behavior.” – Dr. Temple Grandin

Down the road, I’ll share specific strategies for helping children with complex communication needs build independent reading and writing skills.  For now, I’m just basking in the glow of this beautiful experience, catching up on some sleep and beginning to plan our next Camp ALEC!  Stay tuned!

Language + Literacy = Empowerment