Welcome to Summer 2021
The first part of the newsletter I always write about something that is about AAC or education, but today I’m going to talk about family members, especially grandparents, aunts, uncles, and cousins. We discuss all of the time about the importance of coaching parents and siblings, but the AAC Communicators have more family members. I don’t know about you, but I have three grandparents, two aunts, one uncle, and five cousins plus I have a sister in law and I have an adorable nephew. Let’s imagine I am just getting a device for the first time at age 27. What are the first things a speech therapist would add to my device so I could communicate with my family? That is right, their names. If AAC communicators do not have their family members’ names on their device and they do not know how to spell them, they can’t talk about them or ask about them. I ask new families this question, who are the five most important people in the communicator’s life? I do this for three reasons. First it’s so important to know who their favorite people in their life are, the second reason is to make sure that they can get to the name quick and easy, and the third reason is I want to make sure that I model building sentences with that name. When I was younger, I loved my Aunt Lisa. I would do anything if you said, Mike we need you to do this for your Aunt Lisa or smile for Lisa. I lost her and my grandma not that long ago, they were and still are my two biggest supporters. So, who are your AAC Communicator’s biggest supporters and are their names on their AAC device? This issue is long but really good. Meet another Wisconsin AAC communicator, Maddie Jo and read her journey. Sara Morris is our featured adult communicator. She has my dream job. Make sure you scroll down to read her journey. We remember AAC leader Joy Zabala, learn about My team Triumph, learn about AT makers, Appleton adds two AAC communication stations at two parks and we have a new ECHO schedule from the Waisman Center. Enjoy. Mike Hipple
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Remembering a leader of the assistive technology field
As parents you might not know her by name, but you know her work. Dr. Joy Smiley Zabala was a leader in the fields of assistive technology and accessible educational materials. She was one of the great thinkers and presenters in the field, and friend to all. Joy was one of the co-founders of a leadership group about assistive technology that was started in 1999 called QIAT (Quality Indicators in Assistive Technology, QIAT – pronounced “quiet”). QIAT has a website www.qiat.org with free resources for planning and evaluating AT services and manages an email group for people to ask questions about assistive technology services and products. Joy conducted her doctoral dissertation out of the University of Kentucky with stakeholders in the field including parents of individuals with disabilities, consumers of assistive technology, educators, therapists and administrators. Dr. Joy was the creator of the SETT framework (www.joyzabala.com), a process for pulling together the information needed to address the student(self), their Environment, the Tasks to be done, and the Tools needed to support the function of the individuals who need assistive technology tools. Joy’s creations and presentations were not limited to the United States, she is well known internationally having presented on several continents. We lost Joy from cancer on July 1st 2021. Her amazing work will live on and we will always remember the joyful times that she brought to the field. Please keep her family in your thoughts in the coming months. If you would like to honor Joy with a message or contribute to an educational scholarship fund in her honor, you can follow the site from her workplace, CAST https://www.cast.org/news/2021/cast-remembers-friend-colleague-joy-smiley-zabala.
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Horizon School adds communication station
Wisconsin AAC Network interviewed the communication board’s organizer.
What is your name? Sara Tomazevic
What is the school district that you work for? Appleton Area School District
Where did you go to college? UW Stevens Point
How did you get interested in the AAC field? When I was in high school and college, I
worked in the adult program at CP, Inc. in Green Bay, WI. I was always fascinated by the
adults who competently used communication devices (low tech and high tech), despite
their physical impairments. I became even more interested in the field during grad school.
We had a class dedicated to AAC, which was taught by Dr. Gary Cumley and I feel like this
class provided the foundation I needed to build on as a SLP.
How long have you been working in the field? I graduated with my Masters in 2001.
Let’s talk about the playground communication board. How did you get the idea of doing
this? I saw a picture of a playground communication board, but I don’t remember
where…ASHA Leader, maybe? Pinterest? I am not sure, but I know I thought that would be
such a great option for so many of the students at Horizons.
I know you just got this up in May, but what has been the feedback from the school
community? The feedback from our school community has been awesome! One of our
paraprofessionals just shared a story with me about a student (who uses AAC) who sat
down outside and refused to move. When he was prompted to use the communication
board, he was able to communicate that he wanted to swing. I am very excited to hear
more success stories like this!
Did any typical parents emailed you about the board? If yes, what were their thoughts? Not
sure what this question means?
What steps did you need to take to make this happen? I applied for a grant through the
Appleton Education Foundation. Once approved for the grant, I formed a committee with
interested staff members in our school, as well as, Jen VandenEng, AASD’s AAC specialist.
Because the playground is also an Appleton park, I needed to contact the Park and Rec
department with the city and also our district facilities department. This was a real
cooperative effort between AASD and the City of Appleton. During this process, the state
was shut down due to COVID, so that delayed the entire project. I also applied for a SPEAK
grant and was awarded funds that we plan to use for staff training, so that the staff outside
understands how to use the communication board with a variety of students.
What do you want to say to a school that think this is cool, but I just don’t have the time and
the budget to get this done? I would tell them to explore possible funding sources in their
community, such as, donors, fundraising, and grants. As far as the time goes…if you could
form a committee of parents and professionals with a common goal, it would lighten the
workload for each person.
What do you have to work on next? I have been supporting other speech language
pathologists who want to complete similar projects. We are also considering other spaces
in our building that would benefit from a communication board.
Note: A communication station was also added at the Universal Playground in Memorial Park, Appleton.
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Supporting the AT Makers Movement
(Kelly Fonner, MS, www.kellyfonner.com)
Ever think “hey I could make that?” or maybe you have already made something for your own child or a client on your caseload that you thought others could benefit from seeing? That is the premise behind the AT Makers Movement, now embodied in Facebook groups such as AT Makers (https://www.facebook.com/groups/ATMakers) , and CreATe Together Makers Group (https://www.facebook.com/groups/techowlcreatetogether). Both groups are not for profit and have been set up to link together individuals who have some type of need (usually some type of access need to function in daily living, sports, mobility, etc). For example, one of the more recent posts was for modifications for a dog leash to be connected to a power wheelchair and an adaptation so that treats could be dispensed to the dog from its owner who has physical challenges to handing the treats directly. From repurposing older technology, such as Intellikeys keyboards, to creating switches and switch adapted toys, to utilizing 3D printers to create new AT, these groups look to bring true purpose to both the consumer and the creator. Many lasting partnerships have been created as a result.
Both groups try to connect people with a need, with those who can help to solve that need. Sometimes they connect people with Makers Groups from High School Makers’ programs, sometimes it’s with Retired Engineers, or people who are just great “tinkerers”. Either way, lots of cool stuff has been created over the years. You may want to check it out.
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My Team Triumph
(Kelly Fonner, MS, www.kellyfonner.com)
Is your family into sports? Swimming, biking, running/walking? Do you have a member of your family, of any age, who cannot physically participate in these sports but loves to be an active part of the sporting life? You may want to consider doing a search of your local area for a Chapter of MTT. There are Chapters in 16 states; many locations across Wisconsin have groups. https://www.myteamtriumph-wi.org/
My family has participated in MTT activities for about 5 years. My husband is a biker (bicycle) and he has worked with several Captains over the years, attaching a special racing wheelchair to his bike and doing the biking portion of local races including triathlons. I have been able to be a support just by carrying boats to and from the lake, and moving chairs into position. Oh, and walking in the holiday parade to support the team. The organization provides the specialty equipment required, including boats for the swimming portion, specialty bikes for the biking and running portions. We have over 10 Captains in our local chapter, and each has 3 to 4 support people, referred to as Angels. (https://www.myteamtriumph.org/where-we-operate) Check it out! We hope to see you out on the road! Events usually start in late spring and run through early fall.
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Maryjo AAC Journey
Madyjo came into this world in 2011, completing our family of five. She was smiley, happy, and an adorable little princess. At 1 year of age she wasn’t getting in or out of a sitting position so Birth to Three started with physical therapy with speech and occupational therapy starting soon after.
Speech started with sign language, but Madyjo struggled to do the signs. Then we started using picture cards. I made little cards on Velcro with pictures of Cheerios, crackers, and granola bars on the snack cabinet. There were magnets on the fridge with pictures of water, milk, apple juice, carrots, apples and yogurt.
When Madyjo was four years old we started trialing a communication device during her speech sessions. It took more than a year before Madyjo got her first device, a Wego with Touch chat and a keyguard. She started with very motivating sentences about what to put on tv and wanting to eat ice cream.
We play games and read books and take her device to many places. Sometimes her device isn’t the best, like when we are going to a waterpark. I have lots of cards with core words. A huge part of our journey has been the amazing Chatter Matters Camp put on by Variety Children’s Charity of Wisconsin and UW Whitewater. We have met so many families, learned new techniques and resources.
Madyjo has done well with her device, but she’s had it for five years. We tried a smaller device and LAMP Words for Life this spring. We now await final insurance approval. Fingers crossed we will have her new device soon.
Madyjo is involved in Girl Scouts, Cub Scouts, Equine Therapy, and Sunday School. At home she loves to swim, play with Legos, and play with her kitties.
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Waisman Center provides way for AAC families to learn and share
The Waisman Center AAC Programs is pleased to share that we are continuing to offer ECHO AAC Families, a virtual networking and education program. ECHO AAC Families is specifically designed to connect individuals who use AAC and their families with other families across the state. ECHO AAC Families aims to encourage families to meet others who are using AAC and share knowledge on how to best support AAC use. We will meet the first Wednesday of every month via Zoom from 6:00-7:30 pm. To enroll, please email aacpartnershipprogram@waisman.wisc.edu. Dates are 8/4, 9/1,10/6,11/3, and 12/1.
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Meet Sara Morris
Born with the umbilical cord around my shoulder in 1970, from the start, everyone knew I would have some kind of disability. My parents knew I was intelligent from my first month of life. I began trying to speak at nine months old when I said, “Hi.” Of course, my speech did not progress. Using my eyes to point to what I wanted, but my parents knew I needed help to communicate.
When I began nursery school, the therapists told my mom that I would miss my speech the most during my life. After thinking about what she was told, she disagreed since she reasoned that if I could use my hands that I could communicate by pointing to pictures, typing, or writing with a pencil or pen. As usual, Mom was correct. If I had hand use, I could be much more independent and be an artist. My AAC journey would have been much easier with hand use than it has.
My mom told me that I could achieve most things I wanted if I worked at least three times harder than most people, and I have discovered this is true. I have applied this to my AAC usage. My persistence to communicate with everyone has made me successful with AAC. Since I was an adult when I started my AAC journey, I taught myself those devices.
Oh yes, while in school, before I learned how to use my headstick, I sometimes used a scanning typewriter called the Possum. I know some people call the Possum an AAC device, but I do not. I had to spell everything out on the Possum, and generating text was slow and painful, particularly typing algebra. My parents wanted me to have a way to do my schoolwork independently.
Since no insurance would pay for speech therapy for a person with cerebral palsy or two therapists at the same time, my parents paid thousands of dollars for an unsuccessful communication access evaluation, and they with the help of my Morris grandparents bought me an Apple II+ in hopes that I could use scanning to access Apple II+ to do my homework. While Mom had found a scanning program in Byte, a computer magazine during the early 1980s, no one knew how to attach a switch to the computer. Therefore, I could not use it to do my homework, but I played pinball for hours.
At fifteen, when I was a sophomore in school, I began using my headstick with either an IBM computer or portable electronic typewriter to do my schoolwork. At first, I was lucky to hit a key a minute, and I did not say it was the correct key. Soon, I typed five words per minute. I typed out every letter of every word. With this communication method, I graduated from high school, earned an Associate’s degree from Pasadena City College, including two semesters of calculus (Typing math is difficult and I think I can accomplish anything when I earned a B in the semester of calculus), and was hired by Major League Baseball Advanced Media to write a weekly column about the Los Angeles Dodgers, a team that I have followed since I was seven. After meeting the Dodgers in 2002, they encouraged me to get a “speech box” so that we could converse.
Although I began using a word prediction program called WordQ in September 2001, a month after I was hired by MLB Advanced Media, I was not introduced to the world of AAC devices until 2003. An unethical occupational therapist, who was a rep for Words+, pushed me into a Freedom Lite without telling me about other options for AAC devices. The only way I could access the Freedom Lite was by scanning and the only rate enhancements that Freedom Lite had were word prediction and abbreviations. While Mom was always supportive of anything I wanted, she did not think I needed an AAC device since it did not do anything that the computer could not do.
I wanted to speak so that everyone could understand what I said. Therefore, I began investigating the world of AAC devices on the Internet. I saw both the PRC Pathfinder and the DynaVox 4. I chose the DV4 since I did not want to learn Unity. I loved the DV4. While I have had many other AAC devices since, none have fit my needs as well as the DV4. After Mom saw how well I used that device, she believed in the power of AAC devices. However, she also believed people over twelve should be able to learn their own AAC devices. After all, I did.
My success with AAC can be attributed to my persistence to find a way to communicate both in writing and orally. From an early age, I wanted to express my ideas, and with my communicative disabilities, I needed assistive technology equipment to express everything I wanted. My advice to families who are beginning their AAC journeys is don’t give up. There is a communication solution for everyone.
After trying many access methods, I have found the headstick works the best for me. While I am using an ECO2, I want an Accent 1400.
Without AAC, I would not have tried writing a novel. I have published two, Revenge and The Thompson Family Going Through Rough Times through Amazon. Currently, I am working on my third novel and run http://sarahdodgerplace.biz and http://sarahdianemorris.net.
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Breaking news from Wistech. They have Ipads to loan. This is an amazing opportunity for professionals or family members to try out an Ipad with one to two apps loaded on the Ipad. To learn more about this new program visit Wistech website.