AAC Spotlight: Karen Kangas, OTR/L

Q: How did you get interested in AAC?

A: I have worked with children with complex bodies my whole career. I have also always had a lot of children in my life from my many cousins, to babysitting and day camps. I so love listening to children and creating stories and adventures with them, true and imagined. I wanted all the kids I was with to be able to share with me their dreams, ideas and thoughts. If they couldn’t talk, I wanted to find ways besides me “guessing” or me “setting up frameworks of my doing” so that they could tell me what they wanted, when they wanted to and how they wanted to, even if it included “go away.”

In the late 80’s I was employed in a unique early intervention program. We developed a play environment. We included our staff’s kids and our family’s other children so that the environment was inclusive, or to us just full of children. We developed assessment tools that included narratives and observations of children’s learning styles and we used an Apple computer to manage our reports. The children I worked with (with complex bodies) couldn’t press the keys to type or even hold a paintbrush but we worked together to print out their stories. That began my journey of finding ways to help kids talk for themselves. This led me to the Pennsylvania Assistive Device Center to obtain assistive technology (AT) and AAC devices for kids and to educate the use of these with teams.

Q: What do you enjoy most about your job?

A: I love the kids and the teams. I love the kids and want to be with them in the discovery of each activity within any day. But I also love working with the adults with them, and helping teams fall in love with this journey. Recognizing it’s not an outcome or a piece of equipment, but rather a journey we get to enjoy along with our kids.

Q: What is one of your most fond AAC experiences or memories?

A: The day a 9-year-old girl’s face lit up while we were using a PRC LightTalker with Word Strategy. This girl was working with me, another child and an SLP in our outpatient clinic at Penn State University Hospital Rehabilitation Center. The SLP and I were using the device too, and we had the display blown up on an overhead projector so we could also point to how we were moving around to talk. These two kids both had cerebral palsy (CP) and were becoming friends. Well, when we used the word “everyone” the girl starting vocalizing and jumping out of her chair. She had a manual board of letters and symbols and she said to us, “I want it”. I asked her why and she said “real words”. When she heard the word “everyone” she knew this machine had “real words” in it and that’s the device she wanted. I have known this young girl now all her life, and she has told me that she hated pre-programmed phrases, symbols and pictures. She already related as a 9-year-old child that many words were not represented in picture symbols. Needless to say, she went to college and majored in English and History, minored in journalism and she is a writer. 

Q: What is your involvement now in AAC?

A: It is an inherent part of my practice and life. We have jobs and we have vocations. My vocation includes AT, especially AAC and Mobility. I am frequently asked if I’m ready to retire and I can fully say I never intend to, as I am just now practicing as I would wish to, now having learned so much and still wanting to share in the journey. AAC isn’t just talking, it’s also literacy and it’s independence. It is also dependent on mobility, which I hope to make clearer to all as a part of this conference. So, my joy of being with kids with complex bodies and trying to find ways they can manage for themselves just never stops being exciting.

Q: In a dream world, what would you like to see changed in the area of AAC/AT?

A: I’d really love to have children’s devices better understood in how children learn language, rather than the continued adult paradigms being utilized. 

I’d like folks to better understand access; that access should not be “tested” right at the start of the use of a device. Rather all children should have experience with multiple ways of using AAC and AT throughout their daily routines.

I really want families and kids to have manual systems not just as a “back up” or home-made looking. Real manual systems that can be used by new and unfamiliar folks. That can be used outdoors and in the sun and in the pool and on horseback and attached easily to their chair and grabbed easily and quickly, but really be effective. I want simple AAC systems ONLY as support for the most robust ones, and they should never be either/or but inclusive and used frequently.

I just want all kids to have access to all activities with and without technology and then choose as they grow and learn how they want those to work for them.

Q: What is the greatest challenge for users of AAC?

A: Really having a device to work for them as they need it to. There is still a lot of rejection of devices. I don’t think we do a good job of helping or teaching how to interact with unfamiliar folks or with quick and easy communication but not the same phrases over and over with the community. I also don’t think we hook up AAC users with each other and encourage them to share with each other how they do things or what they think, to learn and keep learning how to increase their management of their systems. We need to see the use of an AAC device as learning another language and at the same time mastering technology. There should be time and credit given for that by those of us who support AAC users. 

Q: What would you want families of AAC users to know? (two or three top tips to families)

A: Let’s look for the child to have amazing life experiences to share, first and foremost, rather than wanting them to talk when you want them to. Let’s invest our time in developing literacy and true navigation through experience. This is a JOURNEY. This is life. Let’s share it and learn along the way.