Dan Schierenbeck

Dan Schierenbeck is a freshman at Wright State University in Dayton, Ohio and communicates with an Accent 1400.  He accesses his device with a switch and using the 144 Unity Sequenced language system.  College has been a big transition for him because his mother used to do all communication with professionals for him.  He didn’t mind that because his mother and other family members knew him well and It was time consuming for him to communicate everything himself. But now he lives independently  on campus and he has to be in charge of his own life. He quickly learned he needed to explain his personal needs to attendants and academic needs to professors.  

Dan has found that sometimes professionals don’t want to take the time to interact directly with him.  He shared this story:

A couple of years ago, I was in the hospital for a long time. One of the doctors came in to talk to us. He looked directly at my mom and wouldn’t answer me when I tried to talk. Even my mom and the nurse tried to get him to include me. Finally, I said, “Hey, you can talk to me. My brain works just fine.” He still didn’t get it.

He added, however, his regular doctors have him program his concerns and feelings before his appointment, especially since his family members don’t know exactly how he is feeling.  His college professors do something similar in that they give him discussion questions ahead of time so he can prepare and make it easier for him to participate in class.

In other situations, Dan has a preprogrammed phrase in his device that says “Please wait. It takes me a long time to speak”. He tries to use that phrase when he is out shopping, to interact with retail workers.  But they usually talk to his attendant because they don’t have time or patience to wait for him to speak. He made a point to add when he is with his friends, they know to wait for him to finish what he is saying and they will tell other people to do the same. 

Consequentially he suggested there should be training for retail workers, clergy and medical professionals on how to interact with someone who speaks with a device.  Dan tried to do his part to train people by presenting at Case Western University and one of the students kept asking him specific questions about techniques like he was a speech-language pathologist instead of focusing on just communication. He was frustrated because he was only there so they could experience talking to a person with a device.

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Elva El Haj

Elva El Haj earned her Bachelor of Science degree in Applied Learning and Development with a minor in Special Education at the University of Texas in Austin.  She is employed as an Educational Assistant for a local school district in Texas.  Currently, she works with a student that uses an AAC device in the 3th grade who has a speech impairment due to Cerebral Palsy. However, because it is easier and faster, the student relies more on his own voice instead of using his device. His educational team encourages him to use his communication device in all situations and all times.

After working in education for a number of years, Elva has found the main challenges in interacting with students who rely AAC devices are students being competent and proficient with a device.  She went on to say “This can probably be attributed to a lack of proper training on the device, or maybe just an overall refusal to use it.”  Elva also believes another possible challenge is the individual might not have the proper access method which can lead to frustration for the user and listener and this could discourage use. 

Despite the challenges, Elva believe it is imperative to always communicate with the individual in order to preserve their dignity.  Although, she does realize sometimes it is more convenient to communicate with a family member.  To help to prevent this situation she thinks the individual who relies on AAC can make it easier to communicate with others by knowing their device well and how to use it effectively. Also, making sure they always have access to their device is very important. The individual using the device can also have prestored messages already in place for various situations.

When asked how she would prepare others people to interact with an individual who relies on AAC she would start by suggesting to do research on devices.  As a part of the research understanding language structure would help to see the importance of motor planning and access are for effective communication with a device.   Lastly, a basic understanding of core vocabulary can help to follow the process of forming messages. 

Elva said she is always fascinated when interacting with people or students who use an AAC device. She thinks it probably takes a lot of skill, patience, and confidence for individuals to navigate and communicate through their AAC device. It seems like it would take many years of using and learning how to use it in order to be comfortable in using it as needed for communication.

Rosemary Musachio

roserunway3Rosemary Musachio performs accessibility reviews for a California-based law firm.  She is also the Chief Accessibility Officer for Ruh Global Communications where she performs web accessibility audits and write blogs.   For most of her life, she has been using a word board which she points to with the knuckle of her right thumb.  She is getting an Eye Gaze system within the year.  Rosemary leads a very active life and she interacts with professionals often.

Having people, especially professionals, know she is an intelligent adult cable of making her own decision is very important to Rosemary and that is why she wants to speak for herself.  When somebody is not familiar with how she communicates her caregiver or friend tells the professional that they can talk directly with her and shows the professional how she uses her communication board.  However, Rosemary went on to say: “Sometimes that doesn’t help, especially in hospitals.  Nurses or doctors may not have the patience or time to communicate with me.”

rosemary m boardIn situations when somebody isn’t available to help, Rosemary suggests posting instructions on their word boards or program them in AAC devices on how professionals should communicate with them.  For example, her word board has a clearly printed label on the right side that says, “Please sit on my left side as I point to each word or letter with the lower knuckle of my right thumb.  Say the word or letter out loud as I point to it.”  She also tells people they can guess what she wants to say as she composes her message to save time and effort. If professionals have patience and are open-minded, they will find out communicating with rosemary is a joy.

Rosemary has been asked to present to many college classes and she doesn’t prefer that the instructor who invited her to prepare the students.  She says this because they will know everything once I present.  Now, however, if students have to read her word board, then preparatory instructions would be necessary.

Medical Doctor

kisspng-physician-female-medicine-clip-art-doctor-5abfc774cba6f3.3934297515225178768342Doctor W is a Medical Doctor in Internal Medicine with a large practice in Austin, Texas.  At the current time she two has patients who rely on augmentative and alternative communication (AAC).  She thinks AAC devices are very useful she is thankful that they have the device so can speak their own mind.  Those devices allow her patients to speak for themselves and express what they want to say which enables her to find out what problems they are having.

The main challenge Dr. W has is the time she is allotted to see each patient being so short.  Because it takes additional time for the patient who has a device to communicate what they need to say sometimes she feels rushed and may not get all of the information.  She went on to say “These patients also tend to be more complicated with more medical problems. That is a challenge that I enjoy handling but can often take more time to deal with. “

She does not think there is a lot a patient can do differently because it takes patience on her part to wait for the patient to finish their message.  Dr. W truly believes it is better than to solely rely on a caregiver’s observation. However, sometimes the caregiver can provide information that the patient cannot and this is true for many patients. She does like to get information from the patient when at all possible and having some questions or statements prepared ahead of time could help the process. That way additional questions can probe the problem further.

prepare-for-doctors-appointment-metaDr. W also added when the patient is new, they may make it easier for her to understand their medical issues if they have a brief narrative prepared. This way she could read it and quickly become acquainted with the patient’s history. She have a lot of patients that do this who do not have any language issues. These documents often have medical history, dates of procedures, other physicians they see and emergency contacts.

Stephanie Faso

Stephanie FasoStephanie Faso has a Bachelor of Arts in Communication Studies at San Jose State University and currently she is working on her Master’s also in Communications. She has been using Unity 128/144 Sequenced since 2000 and her current communication device is the Accent 1400.  Stephanie said “Basically, I am just like any other Millennial who is earning their Master’s Degree, but I communicate through a speech-generating device, use a manual wheelchair, and need complete support with my personal care and health needs”.  She said that because she communicates nearly every day with professionals, whether it is her advisors or professors from her Master’s Program or in social situations with store employees and restaurant staff.

She has presented throughout the San Francisco Bay Area since 2011 and during that time Stephanie has developed five versions of her presentations with differing lengths to fit different time length requirements and requests.  All of her presentations are pre-stored in her communication device’s notebooks.  Afterward, she answers the audiences’ spontaneous questions.  Usually, her answers are in-depth and composed on the fly.

Stephanie feels very strongly about speaking for herself instead of having somebody communicating on her behalf as she feels it can become a form of co-dependency and cause an imbalance in the power.   She wants to be treated like her peers without significant speech disabilities because she says after all it is her educational, health, and personal needs and not anyone else’s.  Therefore, she speaks for herself and she thinks it is inappropriate for someone to speak for her, especially without permission.  Stephanie added “Individuals with AAC need to learn how to build boundaries with their caregivers and families on understanding when it is okay for them to speak for themselves and when it is okay to let others to speak with them.”  Understanding the difference between speaking for and speaking with also needs to be set in the boundaries.

downloadWhen an AAC user allows a professional to speak pass them and have others to speak on their behalf Stephanie believes it reinforces the expectations of people with significant speech disabilities are less intelligent and mature.  She also turned the tables by saying adult users of AAC often don’t respect themselves as adults and encouraging them to speak for themselves can be a starting point.  The strategy she uses for this situation is formulating messages and questions beforehand in a notebook in her communication device.  This not only empowers her to speak for herself it also is respectful to the professionals and their time.  When there is a misunderstanding with what she was saying, she gives permission to whoever is with her to clarify what she was saying.

More often than not, Stephanie thinks professionals have a significant amount of patience with her communicative differences.  She continues by saying everyone is used to how she communicates, so communicating with her is like second nature to them and many people in general think that her communication device is so cool, which is a perk of living in Silicon Valley in the 21st century.

 

Dr. Jeannie DeFazio

university-clipart-2For my very first to post I was excited to interview my very good friend Dr. Jeannie DeFazio who is the Chairperson of the Division of Education at Walsh University in Canton, Ohio.  Early in her teaching career she worked with children with speech disabilities when AAC first came on the scene.  Currently, she only intermittently interacts with device users through her university teaching. Also, she interacts socially with young adults in a transition program who have exceptionalities and some use AAC.

Before I moved to Texas I used to speak to her special education class at Walsh University just about every year.  To prepare her students for my visit she told the students that she thinks the most important barriers to overcome for an AAC user are access and motor planning.  Once those are figured out Dr. DeFazio believes the next things to work on are basic understanding of cores vocabulary and language surface structure.

header-img-5-750x932She feels one of the challenges of interacting with an individual who uses AAC is sometimes people do not understand that it may take an individual a little longer to complete a sentence or response.  Dr, DeFazio thinks if the individual shares that they use AAC and it may take a few moments for responses in a prestored utterance in their device may help to have a better interaction.  In addition, the device user could give a short explanation of their device and their access method could be helpful.  Lastly, they can prepare a friendly greeting or a question to help break the ice.

Dr, DeFazio formed a love and respect for the individuals who use AAC because there is so much work that goes into their communication.   She realizes sometimes it is easier for a family member or a caregiver to speak for an individual.  However, she prefers to directly interact with the individual because she wants to respect them by directly communicating with that person. She also feels people need to be patient with the individual and not automatically turn to the family or caregiver

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Introduction

People who rely on Augmentative and Alternative Communication (AAC) often do not interact well with speaking people especially with people who are professionals.  There might be many reasons for this including but not limited to time constraints, knowledge of both parties of AAC, or the lack of interest to interact.  Though, there are certain professions that have no choice but to interact with an individual with AAC such as doctors and perhaps teachers whether or not they are comfortable doing so.  These situations can be awkward at best.  However, the person relying on AAC also needs to be an active participant of the conversation to keep the other party’s interest and attention.

I am going to interview people from different professions or people who rely on AAC every month and write a monthly blog about our interaction.  The interviews will take place in person, through Skype, over the phone, or through e-mail.  This will benefit the people in the community because it would raise awareness to the fact people who rely on AAC can hold conversations effectively.  Moreover, it will help professionals to see how to interact with individuals who rely on ACC appropriately.  Lastly, the blog will assist the users of AAC to receive pointers and techniques from the blog to improve their communication.