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.

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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