Words are Power

AAC Awareness Month continues and, as always, we strive to share posts from all AAC stakeholders, including people who use AAC and their families.  Today we are thrilled to welcome a parent, SLP, and blogger extraordinaire, Dana Nieder, to share her firsthand perspective about how her daughter benefitted from the power of words.

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My introduction to AAC came during a support group meeting for mothers of children with special needs. At the time, my daughter Maya was approaching 2 years old and not speaking, and I was frustrated that I couldn’t help her communicate. The leader of the group said something like “You should talk to that assistive tech guy” and I replied something like “What’s assistive tech?”  Later that night, I hopped from website to website, frantically reading about communication devices and implementation strategies, and watching videos of people who use AAC.  Two years later, after a few false starts and a handful of advocacy battles, we found a great communication app and learned how to become a family who uses AAC.  We’ve had amazing periods of use, modeling, and growth, and we’ve had dry spells. We’ve had moments of “I can’t believe she knew where to find the word cubicle” and moments of “it’s bedtime and the battery is still at 96%- whoops.” But in the six years that Maya has had her talker, the impact that it has had on her life has been life changing.

Maya and her brother, Will, are both sitting in a chair together. Each child has a communication system in his or her lap and Maya is watching Will constructing a message on his device.

Maya and her brother, Will, chatting on a comfy chair using AAC.

First, AAC gave Maya access to words that were intensely humanizing. She was suddenly able to talk about her feelings-both emotional ones (like telling me she was scared before bedtime), and physical ones (like when she told me that her ears hurt-and sure enough, she had an ear infection). A few months after she began using her AAC device, her preschool class had a special show-and-tell day. Maya selected her favorite toy horse and told me how excited she was to bring it to school and show it to her best friend. When she came home I asked “Did Jazzy like your horse?” and she told me (with speech) “No! Not here today!”  I said, “Oh no! She was absent? How did that make you feel?” and she reached over to her talker and said “heartbroken.” Without AAC, I might have been able to infer her disappointment, but I certainly wouldn’t have guessed that she felt heartbroken.

Having a robust AAC system enabled Maya to show off her personality.  Maya’s app has a button that, when pushed, opens all of the words that are in the system. I didn’t understand the power of this button initially, but it quickly revealed itself. Maya would open 5,000 words and then spend time tapping her way around, finding things that interested her and memorizing their locations. This was how we learned that she was interested in the weather and the calendar, topics of daily discussion at preschool. Her first joke came one morning when she looked out the window at a bright, cloudless day, looked at me, and tapped “rainy.” And then she laughed. She was funny! Well, of course she was funny—we had seen her silliness in many different ways before this, but now she actually had enough language to make a joke!  Besides the jokes, we learned about her favorite topics of conversation (which have ranged widely over the past six years), her favorite color, who she likes to sit next to at school, her favorite adjectives . . . everything. The talker has given her a means to share herself, in ways that gestures and a small amount of sounds and signs most certainly would not have.

The third way that having access to a big system changed Maya’s life was that it gave her the power to create a narrative, to tell a story.  She can tell me if anything interesting happened at school, like about the boy in her class who likes to tell another girl to “shut up”, about her field trip to Legoland, and about her seatmate on the bus. She can tell her teachers about weekend bike rides or trips to the zoo.

This ability to report on things that happen when she is away from us was a huge development. Parents of children with complex communication needs often worry that their children may be condescended to, disrespected, handled roughly, verbally abused, or worse when their aren’t with their families. Words are power, and nonverbal kids are powerless. Every person that works with Maya knows that she has the words and the ability to tell me about the staffs’ interactions with her. I’ve received many calls about minor incidents at school that have ended with “I just wanted to let you know because I’m sure she’s going to come home and tell you about it.” Children must have a full vocabulary so that they can piece together a narrative, whether it’s to share something fun about their day or report something more serious.

Lastly, AAC has allowed Maya to demonstrate her competence, to prove herself capable. When she turned five we went through the process to leave the preschool system and enter the grade school system-a process that involved evaluations, meetings, and touring a number of schools. On one tour, I spoke with the social worker about the challenges of finding an appropriate school placement for Maya: one that would meet her therapeutic needs while also offering an academically challenging environment.  The social worker led us through the school, into several classrooms, where Maya made herself right at home. In her typical self-directed way she wandered around, touching things, exploring, pulling up a chair next to some groups. She didn’t speak or use her device. She didn’t really acknowledge anyone who spoke to her. When we returned to the social worker’s office she said, “So Maya would either be in Room A (an academically solid room) or Room B (a not-at-all academically solid room). There was a huge gap between those classrooms. Maya sat next to me with her talker, which she had ignored for the entire visit. The social worker had tried to entice her into using it (Can you show me how that works? Can you tell me your favorite color?), but Maya hadn’t been interested. I knew that if she saw the talker in action, her perception of Maya would shift. I leaned over and said, “Hey, we’re going to leave in a few minutes. If you could go anywhere you wanted when we leave here, where would you want to go?”

She smiled and leaned in and tapped Amusement park.  “What would you do there?” Roller coaster. “Oh, ride the roller coaster? Is there anyone that you would want to bring with you?” Daddy, Layla.  “Well, we can’t go today. Maybe on another day—do you know what day tomorrow is?” Thursday.  “Well, that won’t work, you have school on Thursday. What’s a day that you don’t have school?” Saturday. “Hmm, maybe. Hey we’ve been here a while, you must be getting hungry. I have some snacks in my bag, is there something you’d like? In a full sentence, please.” I want cereal bar please.

At this point, the social worker picked up her cell phone and called three different staff members (the principal, another social worker, and the head of the speech department) and said, “You’ve got to come to my office and see this little girl using her communication device.” In the end, they were happy to offer her the academically solid classroom. Her entire educational tract would have been different if she hadn’t been able to use a talker during that meeting.

Several months later, I had come to suspect that Maya was reading. She would stand over my shoulder and point to words that she recognized, smiling. I did some informal assessing, writing down instructions like “Get up and dance!” to see if she would follow them—and she did get up and dance, but did that mean she could read the whole sentence or just recognize the word “dance”? I wasn’t sure. Maya is tough to assess, even for me. I presented her with a sentence on an index card and asked her to read it to me with her voice.  The sentence was “I want to eat chocolate ice cream tomorrow.” She read “Wah to ee ta dee tie ya”. Was she reading the words? Maybe. Or maybe she was just making noises for each word based on the first letter.  After she had read the sentence with her voice, I asked her to say each word with her talker  . . . and she formed the sentence perfectly “I want to eat chocolate ice cream tomorrow.”

She was reading. And she had a way to prove it.

Having access to an expansive communication system provides her with the ability to advocate for herself, and express her feelings. It gives her a way to show others the connections that she’s making, the things that she’s thinking, and her ability to read. And no amount of me saying, she’s smart, I know she is, really!  is as powerful as 30 seconds of watching Maya speak for herself.

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Dana Nieder is a former teacher, current AAC parent-advocate, and recent recipient of an M.S. in speech-language pathology. She writes the blog “Uncommon Sense” and runs the social media accounts associated with the blog. She is passionate about providing individuals with complex communication needs with early access to robust AAC systems, and about bridging the gap that can exist between AAC families and professionals. Dana lives in New York City with her husband, Dave, and two children, Maya and Will.

DISCLOSURE

Ms. Nieder has no financial or nonfinancial relationships to disclose.

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Jill E Senner, PhD, CCC-SLP
SpeakUP
Editor-in-Chief

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