We're Just Like Everyone Else: Family Members and AAC Users Speak Up About What They Need You to Know

A Gap Between EBP and Reality

In today's clinical realm, I know that it's easy (and even common!) to "miss the mark" when it comes to providing services to our clients who need AAC (augmentative alternative communication). Light and McNaughton (2012) stated there's a gap in what we know about AAC interventions and what currently happens in the everyday lives of adults and children who use AAC. They suggested increasing public awareness and decreasing attitudinal barriers as ways we can help people who use AAC. That's why I wanted to reach out to people who use AAC and family members of young AAC users to find out what we could do as clinicians and allies to better support them. 

“If you can learn a simple trick, Scout, you’ll get along a lot better with all kinds of folks. You never really understand a person until you consider things from his point of view, until you climb inside of his skin and walk around in it.” 
– Atticus Finch in To Kill A Mockingbird by Harper Lee

To help us understand their perspective, I asked family members of AAC users and people who use AAC what their number one thing they wish others knew about AAC before they met them. Here's what they had to say:

From the Family Members of Young AAC Users:

Don't be afraid

"My number one thing about AAC I wish people knew before meeting Ellen is don't be afraid, just give it a go. Don't worry about if Ellen is looking or how she will respond. Just give it a go and start learning her language for yourself. She will learn from you and probably think you are pretty amazing for trying."

-Melanie Boyle

Follow them at @giggles_with_ellie

On the inside, he is exactly the same as everyone else

"I wish people knew that it was OK to be a little uncomfortable when communicating in a new and different way. I know my son's appearance and equipment can be intimidating, but on the inside, he is exactly the same as everyone else. He wants to be loved and engaged with and included. I wish people knew how deeply I yearn for them to bravely push past their comfort zone and come near, treating us as friends instead of lepers." 

-Suzi Boubion

Find out more about Oliver's journey at www.oliversodyssey.org and www.youtube.com/oliversodyssey and on Instagram at @oliversodyssey1

Using an AAC device doesn't hold back her verbal communication

"I wish people knew to be patient with both of us. She's learning how to use AAC but so am I. When I model for her, it's to help her be able to use it on her own. Her using an AAC device doesn't hold back her verbal communication, it's only helped it blossom. It's also cut down her frustration with communication."

-Chelsea, mother of Chloe

They can be found on Instagram at @lifewithbabybear and on Facebook at Life with my Baby Bear.

She is still a girl with opinions, thoughts, and a personality

"I wish people understood the importance and value of presuming competence. She may speak a different way than most people, but she is still a girl with opinions, thoughts, and a personality."

-Madison's mom

Follow Madison and her family on Instagram at @quiet.quiantrelle and on Facebook at www.facebook.com/adventuresinaac 

From People who use AAC:

Communication is key

"People with complex communication disorders and who use AAC are not unintelligent nor incapable of anything. They just need the proper support, education, and opportunities to be successful. We need to continue to educate the public about AAC and continue advocating for those who use AAC to have the adequate support, education, and tools to achieve success in education, employment, interpersonal relationships and beyond. Communication is key!" 

- Hannah Foley

Hannah Foley can be found on Instagram at @hannah.r.foley, Facebook at Hannah Foley, Twitter at Hannah_Foley17 and LinkedIn at Hannah Foley.

It's everything.

"AAC is everything to me and my family."

-Mike Hipple

Mike Hipple can be found on Facebook @Mike Hipple.

AAC is just my voice or the way I communicate

"The number one thing I would love people to know about AAC before meeting me is AAC is just my voice or the way I communicate. It isn't anything different from a person's voice. Words are just popping into my head just like everybody, and I'm using my AAC device to say those words. That is how we all communicate. So, yes you have to be more patient with somebody using AAC because it's a little slower for some, but they are just communicating the words that are popping into their head."

-Chris Klein

Chris Klein can be found at www.lessonsfromthebigtoe.com and on Twitter @MrToe23

Your thoughts and feelings and words matter

"I wish people knew I'm kind... Your thoughts and feelings and words matter, no matter what form of communication you want to use. This is how I communicate, no matter what." 

-Gabriel Lopez

Gabriel can be found on Facebook @Gabriel Lopez.

AAC is a Way to Communicate, But on the Inside We're All the Same

Did you see a common theme here? Did you note that people who use AAC desire to be treated like anyone else and allowed the opportunity to use their AAC system? Perhaps seeing things from the perspective of people who use AAC isn't all that difficult, after all. All you would need to do is imagine a life in which you relied on a different voice from the one you currently have. A voice in which you were able to communicate all of the things you do now. 

So, the next time you meet a person who uses AAC, I hope these voices help guide you in how you can be a better advocate, friend, ally, and clinician for people who use AAC. It's time we close the gap and act on the facts we know to be true: that we all share a commonality of being a human being on this place called Earth, and we are all deserving of a voice.

References

Janice Light & David McNaughton (2012) The Changing Face of Augmentative and Alternative Communication: Past, Present, and Future Challenges, Augmentative and Alternative Communication, 28:4, 197-204, DOI: 10.3109/07434618.2012.737024

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