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Nov 29, 2012

Gracie Finds Her Voice: Inclusion and AAC

by Staff Blogger Marny Helfrich, M.Ed.

She stood in the strange room, eyes wide, taking it all in.  Then she started to scream.  What was wrong?  Was she scared?  Lonely?  Hungry?  Angry?  There was no way to know, because she had no words, no way to communicate.  (As it turned out, she needed to use the restroom, but it took some trial-and-error, accompanied by continued crying on her part, to figure that out). 

Over the next days and weeks, the words began to come – initially imitated, and then spontaneously.   First, simple nouns that served as requests to meet her needs – “cookie,” “milk,” “cracker,” “water,” “shoes.”  A few verbs and directives, again to get across what she wanted – “help,” “up,” “more,” “please,” “go,” “stop.”  Before long, the nouns and adjectives began to pour forth, not just for requesting but also for commenting, to share things she saw and experienced – “elephant,” “train,” “blocks,” “wet,” “giraffe,” “dirty,” “flower.”   The early words were concrete, but with time more abstract concepts began to be included in her conversation – “happy,”  “empty,”“tired,” “don’t want,” “beautiful,” “later,” “same,” “girl,” “wait,” “where?”  Each word was  a tiny step on its own, but every one was powerful, a key to giving her some control over the big world around her, a tool for building connections with other people, a window into her mind and her heart.  The best moment?  The first time she looked into my eyes and said, “Mama.”

As is no doubt obvious by now, this is my daughter’s story.  Adopted this spring from China at the age of 3, Gracie is profoundly Deaf.  Although she was well cared for in her orphanage, she was not offered language in a form that was accessible to her.  When I first met her, she was without words but full of curiosity and motivated to connect and communicate, and once exposed to American Sign Language, she soaked it up like a little sponge.  We still have rough moments, of course, as her three-year-old attitudes and opinions outstrip her still limited language skills and the frustration comes out in screams and tears, but each day she reveals more of what she thinks and feels.

Watching Gracie’s language blossom and seeing how being able to communicate opens up her world has been fascinating and profoundly rewarding on a personal level, and also thought provoking for me as an educator.  I think often of students I have known who don’t have a reliable means of communication.   Many of these students have much greater barriers to effective communication than simple lack of access; unlike Gracie, they have challenges with movement and/or cognition that make symbolic communication, whether with voice, signs, or Alternative and Augmentative Communication (AAC) devices, difficult to achieve.  But their need to be able to share their needs, their experiences, their observations, their dreams with the people around them is no less intense than hers, or yours, or mine.  As augmentative communication advocate Rosemary Crossley famously said, “Not being able to speak is not the same as not having anything to say.”

Gracie signing "train"

Without an effective and consistent way to communicate, these students are not only cut off from full participation and relationships with their peers and classmates, they are also at high risk to be excluded, overlooked, and underestimated by the people around them.  I see how the way people view Gracie changes when I give voice to her signs – they realize that not only is she cute, she is also observant, curious, and bright.  Kids who don’t have that option are frequently dismissed by their teachers and therapists as “too low” to benefit from being taught the regular curriculum, because they don’t demonstrate their learning like other students do (how could they, without conventional expressive language?).  We need a corollary to Crossley’s statement – “Not being able to answer comprehension questions is not the same as not being able to understand.”

Sadly, many students with complex disabilities don’t have access to the AAC support they need.  A shocking number of students don’t have systems available, because they have been deemed to lack the “prerequisite skills” for communication.   Even when devices have been obtained, they too often sit on shelves, in backpacks, and in therapists’ offices, unused for any number of reasons: the vocabulary available is not practical, powerful or motivating; or the teachers, paraprofessionals, and peers who interact with the student every day haven’t been trained to use and program the device; or a plan to teach and encourage the student to use it has not been put in place. 

Access to an effective way to communicate, with all the supports needed to make that happen, is a critical component of being included in school and in life.  As advocates for inclusion, we need to continue to fight the assumptions, professional attitudes, and other structural barriers that get in the way of finding a communication approach that works for each child and ensuring its use throughout the child’s life.  Everyone deserves a way to say “cookie,” “giraffe,” “don’t like that,” “later,” and “Mama.”

For more information on AAC and Systems to use, check out the following resources:

http://www.montgomeryschoolsmd.org/departments/interact/

http://www.abilityhub.com/aac/aac-devices.htm

http://www.mdod.maryland.gov/MTAP%20Home.aspx

http://www.matcoop.org/index.html

http://www.augcominc.com/

http://aac.unl.edu/yaack/toc.html

http://www.lburkhart.com/gphb.htm

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Marny Helfrich joined the MCIE staff as an Inclusive Education Facilitator in 2006.  Prior to that, she worked with young children with and without disabilities and their families in a variety of school and community settings.  While she has worked with schools at all levels, she is particularly interested in inclusive early childhood education and in the effective use of paraprofessionals in inclusive schools. She adopted Grace from China in March of 2012.

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  • Re: Gracie Finds Her Voice: Inclusion and AAC

    Hi Marny... Nice piece. And I share your views on AAC and the "supports needed" to make that access to effective communication happen. But you don't say whether Gracie used or is using an AAC device, in addition to using ALS. Either for herself (help with speech) or for her classmates (help with ALS, in an effort to give voice to her signs as you do), is Gracie using any AAC equipment?
    Thanks,
    Mike McLaughlin
  • Re: Gracie Finds Her Voice: Inclusion and AAC

    Hi Mike!

    Thanks for your comment! At the moment, Gracie is not using any AAC devices. She did receive cochlear implants this summer, so she is learning to use her voice, although signing remains her primary modality at this point. That could be something we explore in their future, though -- I am open to whatever can benefit her! I have seen Deaf adults who use their phones as "AAC devices" by just opening the notes or texting function and typing what they want to say and then handing it to the person (store clerk, receptionist, whomever) to read and type a response (voice output not needed in those situations, of course). -- Marny
  • Re: Gracie Finds Her Voice: Inclusion and AAC

    Hi Mike!

    Thanks for your comment! At the moment, Gracie is not using any AAC devices. She did receive cochlear implants this summer, so she is learning to use her voice, although signing remains her primary modality at this point. That could be something we explore in their future, though -- I am open to whatever can benefit her! I have seen Deaf adults who use their phones as "AAC devices" by just opening the notes or texting function and typing what they want to say and then handing it to the person (store clerk, receptionist, whomever) to read and type a response (voice output not needed in those situations, of course). -- Marny
  • Re: Gracie Finds Her Voice: Inclusion and AAC

    Thanks for a wonderful post. Too many kids have been left behind for too long while we wait for them to demonstrate supposed readiness skills. Everyone can develop real communication skills if we provide them with quality services.
    Carole (www.PrAACticalAAC.org)

6810 Deerpath Rd, Suite #300, Elkridge, MD 21075 / 410.859.5400 phone / 410.859.1509 fax / mcie@mcie.org

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