Tag: communication

Speaking with An Augmentative Device

Person using agumentative deviceMy 25 years old son is non-verbal. He uses his phone as his speech output device. He has worked hard to learn the software on his phone.  This software speaks the words that he types into his device.  He has used a variety of other speech output devices in the past.  There are many more options for speech output devices available now.  And, there are places like MassMatch (1 ) which can help each user to find the best choice.

When he was younger, family members and teachers would always be with him and speak for him. These days he still always with someone when he is out in the community.  But, now, he is interested in speaking for himself.  He also has the vocabulary and skills to speak for himself.

So, how does it go?  Well, it depends… Let me describe a common situation that shows how much effort it takes for my son to communicate in public places. Ordering fast food or in a restaurant is something that we all do. For my son, it is a chore. He must get the waiter’s attention. Then, he will order his food.  Most of the time, he needs to repeat his order.  e needs to repeat it more than one time. If the waiter stops and listens, it is easier.  but, most of the time, he needs to repeat his order.

Speaking in public is hard for many people. It is more difficult for someone who uses a speech output device. He shows us that many strangers do not choose to listen.  Our public places, malls, restaurants, outdoor spaces are noisy.  here is music, talking, traffic, and other sounds.  My son cranks up the volume on his phone. On a good day, a stranger will listen to his computer voice.  The pride my son takes in talking with someone is worth the effort. This photo shows my son speaking to us.  You may be in a place where someone is trying to speak with a device.  Please take the time to listen and respond. It only takes a little bit more time and the rewards are great.

(1) MassMatch

How to Call a Deaf Person on the Phone

person using video relay servicesI am a doctor, and I am deaf. A deaf person is someone who cannot hear most things. For example, I cannot hear your voice on my cell phone, but we can still talk on the phone!

If you need to talk to a deaf or hard of hearing person on the phone, it is important to ask him or her what is the best way. We may have a special phone number for you to call.

Some people use a special phone like a TTY/TDD or a Captel phone. You can call on any regular phone, and a person in the middle will type what you say on their special phone, so the deaf person can read it.

If the deaf person knows sign language, it is popular to use a video relay service. During a video relay call, you will talk to a sign language interpreter on your phone. The interpreter shows up on a video camera to the deaf person, and will sign what you said. I can use this app on my cell phone!

Through this phone technology, deaf people can call the doctor and talk to family. They can also call 9-1-1 in an emergency. If you are deaf or hard of hearing, you can use these services for free.

The Rochester Institute for Technology has a How To Guide about Video Relay Service (PDF)

Using Tablets to Talk!

Picture of school-aged girl sitting at table using tablet.Communication

There are some children who have difficulty talking. Using a tablet can help.  Finding the right tablet for each child is not easy. A specialist, called a Speech Language Pathologist (SLP), is like a doctor. A SLP meets with the child and watches the child playing. The SLP also speaks to the child. The SLP enables the child to play with different tablets. The purpose is to see which tablet the child likes to use the most. The SLP then asks the child to do a few tasks. The difficulty of the task levels go up to match the level of the child’s understanding. The
SLP has questions for parents as well. The SLP wants to understand how parents and their children talk to each other at home.
Once the SLP finishes meeting with the child, the SLP will write a report. Parents will receive a copy. If parents want to get a tablet for their child, parents and the SLP will work with each other for at least a month. They watch the child using the tablet at school, and then at home. The purpose is to see if the new tablet is really helpful for the child. Parents will take some data to share with the SLP.
Once a child has the right matching tablet, it is important for the parents to know how to use it. Training for parents is important. Parents need to know how to help their children. Many are afraid of allowing their children to use tablets. They worry their children will become dependent on a tablet and not vocalize any more.
For more information, contact Massachusetts Advocates for Children.

Communicating With People Who Use AAC

Image of an AAC screen
Image of an AAC screen

“In this country we are justly proud of the freedom of speech, that we can say what we want. But I think there is an even more basic freedom than the freedom of speech and that is the freedom to speak.” Stephen Hawking

What is AAC ?
As a speech-language pathologist, I have had the pleasure of working with many children and adults whose developmental disorders or traumatic brain injuries have rendered them without a voice. As a result, many communicate with the support of Augmentative Alternative Communication (AAC) systems. AAC is a way to enhance and support communication in people whose existing speech is not functional. AAC can be:

•    High-Tech

  •     iPads;
  •     DynaVox;
  •     Tobii Eye Tracking; or

•    Low-Tech

  •     DynaWrite
  •     voice output; or

•     No-Tech

  •     picture books;
  •     alphabet system

Communication Partners
I worked with Jen*, a former patient of mine who used a communication book with words organized in numbered columns and rows. Jen was a fast user. I was a fast learner. I pointed to each column and row. She would raise her eyebrows to say yes or wiggle her lips to say no. We would eventually land on the target word (“Column 6, Row 2, Word: Hi”). Just as there are communication breakdowns in a speaking conversation, there are those in a conversation using AAC too. There were times when I moved through the columns or rows too quickly, and completely missed Jen’s signal. She would get frustrated. Or, maybe she was tired that day and her ambiguous raised eyebrows looked more like a muscle twitch. I would get frustrated. No matter how many breakdowns or how long it took, we had an endless amount of patience for one another. We were communication partners. We wanted to hear what the other had to say.
*Name has been changed

“And he’s Dopey…He never talks”
Too often I have opened a patient’s file and read ancient medical reports saying, “Patient was unable to respond to my testing questions…Patient is diagnosed with Mental Retardation”. Fortunately, we have come a long way from those archaic testing methods! We know that even though an individual cannot speak, it does not mean that s/he does not THINK (contrary to the classic fairy tale). Across my work, I have had the honor of meeting smart people, who just happen to also be AAC users. They have written books, presented at conferences and produced short films. AAC users have a lot to share with us as long as we are patient and willing to listen.

3 Helpful Tips When Communicating With an AAC User
1.    Remember to Pause. As I have discussed throughout this blog, patience is important, especially when communicating with AAC users. Be sure to provide enough pause time to allow the AAC user to respond to your question or comment.
2.    Face the Speaker. There is more to communication than speech alone. We communicate with our ENTIRE body, using facial cues, hand gestures and body movements. Make sure to face the AAC user while s/he is speaking so that you incorporate all those non-verbal cues and gain a better understanding of his/her message.
3.    Reduce the Use of Questions. There is a sense of pressure to be the one to ask the questions and maintain the conversation. However, questions tend to demand the AAC user to talk and can make the conversation one-sided. Instead, you can elicit a conversation by making comments.

Suggested Resources
•    I Raise My Eyes to Say Yes, by Ruth Sienkiewicz-Mercer and Steven B. Kaplan
•    The Diving Bell and the Butterfly, by Jean-Dominique Bauby (there is a movie too!)
•    Radiolab- Mr. Bliss: https://www.radiolab.org/story/257194-man-became-bliss/
•    Praactical AAC Blog: https://praacticalaac.org/
•    Augmentative Communication Program at Boston Children’s Hospital Facebook Page: https://www.facebook.com/ACPCHBoston?ref=br_tf

AAC Implementation in Mainstream Environments

It is estimated that there are nearly 165,000 students receiving special education services in the state of Massachusetts (Massachusetts Department of Elementary and Secondary Education, 2012), with approximately 9,854 being essentially nonverbal, and in need of some form of augmentative and alternative communication (AAC; Hall, 2013). Many of these individuals are supported in mainstream and inclusive educational settings. However, there are “many obstacles that can hinder a successful inclusion experience…[and] attitudinal barriers can be some of the most challenging and are often rooted in a general education teacher’s lack of confidence in his/her instructional skills when presented with students who have disabilities” (Kramlick, 2012, p. 106).

For students with complex communication needs requiring AAC, it is essential that he has access to his device throughout his school day. In addition it is critical that the student is encouraged to, and supported in his use of his device for a range of academically related, as well as social activities. Successful inclusion of an individual using AAC within a general education environment is contingent upon consistent collaboration among multiple team members (Kent-Walsh, 2003; Kramlich, 2012); and although it may be overwhelming to think of how to adapt the general education curriculum to support individuals using AAC, there are a number strategies that can be implemented.

a student uses his AAC device hooked up to a standard laptop
Figure 1: Third grade general education student uses his AAC device hooked up to a standard laptop to complete the MCAS

AAC implementation is a team effort. General education teachers should be supported by related service personnel from multiple disciplines depending on the nature of the student’s needs. Each team member’s goals (although specific to their specialty) should support and reinforce what is being done in class. For example, the AAC consultant can help ensure that necessary vocabulary is programmed into the AAC system, the student can locate the vocabulary, or knows how to use word prediction to type the relevant words. The speech pathologist can support learning new vocabulary, or embedding target vocabulary in complete sentences. The occupational therapist can work on writing or typing target words, or cutting out pictures of specific vocabulary. The physical therapist could work on having the student reach, range or ambulate to place pictures of target words in different locations, simultaneously supporting generalization of vocabulary learning while addressing gross motor goals.

a student using his AAC system
Figure 2: The same third grade student participates in a group reading activity in his general education classroom using his AAC system

In addition to this shared, collaborative teaming, there are simple strategies that can be used within the classroom. For starters, make sure all team members (including a student’s 1:1 support) are trained in the student’s device and that they receive regular consultation from an AAC specialist or other professional well versed in the student’s device. Offer a class training or discussion about the student’s device to help demystify it, and to show classmates that AAC is just another form of communication and how impressive it is that the student can use an AAC system as well as he does. Let the student using AAC lead a discussion, read a page of a book, or tell peers what is next on the schedule. Using AAC takes time so slow down the pace of a morning meeting or group activity to let the student comment on the weather, tell a joke, share an answer, label a color, or tell a friend it is her turn. Connect the student’s device to a computer so he can type letters, words, and phrases in a word processing document. Have the student use his device to do math problems or count. Most devices have phonics pages, so help the student explore different letter sounds, rhymes, or word endings. Most importantly, always have the AAC system available and use it with the student. The more the device is accepted and modeled as an effective communication tool, the more the student will use it. It is our attitude and willingness to involve AAC that will help ensure successful AAC implementation within general education environments.

References:

Hall, N. (2013). An Investigation of the Efficacy of Direct and Indirect AAC Service Provision via Telepractice. Open Access Dissertations. Paper 743.

Kent-Walsh, J. E. & Light, J. (2003). General education teachers’ experiences with inclusion of students who use augmentative and alternative communication. Augmentative and Alternative Communication, 19(2), 104-124).

Kramlich, C. (2012).Perspectives from general education teachers, students and their parents: Including students with robust communication devices in general education classrooms. Perspectives on Augmentative and Alternative Communication, 21, 105-114.

Massachusetts Department of Elementary and Secondary Education. (2012). Selected Populations (2011-12).

“Living my Childhood Dream”, by Tracy Thresher

Tracy Thresher Vote HereTracy Thresher lives and works in Vermont as an advocate for people with disabilities. He has written:

“As a child, I struggled with no reliable way to communicate. I now live out my dream of traveling to other states to educate others on movement and communication differences. Primarily, I advocate to promote the Presumption of Competence. “ (Blog Post, October 30, 2012)

This week we are pleased to share the transcript of an interview with Tracy that was recently published in Autism Around the Globe .

I am Tracy Thresher from Barre, Vermont. I now live part of my childhood dream thanks to the support of facilitated communication. Master trainer, Harvey Lavoy, has been my primo facilitator since the early 90s. Harvey, master trainer Pascal Cheng and my pal, Larry Bissonnette, and I have presented to educate others for many moons. Since the release of “Wretches & Jabberers”, Gerry Wurzburg’s documentary about our lives and work, our travel calendar has been wonderfully and fantastically full of opportunities to promote the presumption of competence. Please read
my blog  to follow along on my journey.

Below is a transcript from my interview with the NLM Family Foundation featured in a video montage created by the Foundation titled, “In Their Own Words: Living with Autism in Adulthood.” I have had mind blowing professional growth thanks to communication. Communication opens the door to opportunity.

What are your hopes and aspirations for creating the adult life you desire?

My hopes are like a beautiful tapestry which I need to find the perfect combination of support to make into my own magic carpet. My wish is to create the life I see in my head on the mountaintop of my Green Mountains. To be true to the Tracy on the inside, I need to have people in the mindset of peaceful open-mindedness.

It is my desire to be independent to the best of my ability. I communicate more slowly than I wish to in this high-paced world but my thoughts are very quick. The touch of my facilitator must be one of peaceful calm. To build my dream of becoming an educator I pushed through many barriers of built up walls of enclosing people in institutions or encasing them in the trap of no outlet for their inner thoughts. It is more harmful to my soul to be in this stubborn body than I can type. To hope is to have faith in a future that includes professional growth and not the antiquated roles of paper shredding or stocking shelves but being respected for the knowledge this life has taught me.

My priority is to own or rent my own home or place with a good supportive roommate who is willing to be open to going through intensive training to get to see how my spirit relaxes with communication. I am not the person I appear to be upon a passing glance. To get to be the man I aspire to be is a lifelong journey. It is my vision quest to find more peace in my life. I think having my own home is the next step on my ladder of communication, as it is what I must have to be free of the encumbrances of others.

What are the specific challenges that you believe you face or will face in your adult life (housing, companions who assist you, living in communities, relationships, employment, education, etc.)?

As I mentioned, my priority is housing or more difficult to find is a companion to be my assistant in the life of becoming more independent. The hardest part is envisioning what I need but being unable to find the perfect combination of nice and firm communication partner. The world moves quickly and I need open-minded people who slow down to listen to my typing.

To live in the friendly Central Vermont community is a blessing. We have educated many people in our community by joining forces in schools. We have also spoken to legislators to let them see our intelligence. Our social fabric is beautifully sprinkled with an eclectic mix of abilities. There is more to be done and my fellow self-advocates and our supporters are tirelessly trudging up the trail to higher thinking. Through my work I have met many wonderful people who enrich my life and feed my soul to the point I dreamt of as a lonely boy.

My family loved me to the max; however, life in school absolutely traumatized me. It became unbearable to be thought of as a child who could not be educated. Now I mentor students. It is my mission to inspire children and show neurotypical kids how to slow down to listen to typing. More importantly, how to be a friend is what kids need to learn. I am thinking friendship is the way to open pathways to learning. On the mountaintop of success people need to have a hand to pull each other up.

On the top of my bucket list is to continue to learn and teach. I graduated from the school of hard knocks; now I try to prevent other children from living through the pain of a life of misunderstanding. I have friends who have made me proud by pursuing higher formal education. I would say my education continues through my work on the circuit of presenting to schools and communities. My employment is one of typing to educate. Working on presentations is on my mind constantly. I write it on my brain, and then I need my facilitator to be at my side to push the words out. To come from a menial job to a professional career is my proudest moment.

What types of programs or services would enable you to achieve the adult life that you envision and/or desire?

It is my desire to, of course, be as independent as my abilities allow. I want the same for all people. The Vermont legislature is better at listening to my typing than most other states. I understand politics and the need to divide services as fairly as possible. Ideally, I would like my services to include funding that is more reflective of the housing costs necessary to put me on the path to independence. The primary obstacle in my experience though is training of facilitators.

Harvey Lavoy, Pascal Cheng, Larry Bissonnette and I work hard to cover the state of Vermont on our shoestring budget but it is tough to get to everyone we would like to. For Harvey, it is a juggling of priorities that need to be addressed. My mission in life is to have the home of peaceful independence to communicate in daily life across environments. More than anything, I want to create a world of communication for all, to have our voices heard loudly from the hills.

Tracy Thresher
Self-Advocate, Activist, and Documentary Film Star

2012