Welcome to the first quarterly Wisconsin AAC Network’s newsletter of 2019 Wisconsin. Can you believe that it is 2019 already? The AAC community has changed a lot in the last ten years. Back in 2009 the first communication app became available and boy did that change the AAC world. Before that we only had a few companies that made communication devices. But today we have many companies that make great communication devices and communication apps. It is great to have variety and lots of options, but it can be overwhelming to professionals and parents as they start their AAC journey. Now more than ever we need to do good evaluations, match device or app features to the communicator’s strengths and have communicators try several devices at home and at school. It is so important to keep the family involved. I feel family buy in is a huge piece of the communicator’s success. I cannot imagine how hard it is for the professionals too, so many devices and apps. It would be easy to work with just one system or app but ask yourself what is best for the communicator. Again let the communicator’s strengths and a good evaluation are the guiding force. In this newsletter another family shares their AAC journey, we invite you to consider joining United States Society of Augmentative Alternative Communication and we share books that feature AAC communicators. So stay warm, stay safe and enjoy the newsletter.
Calling all AAC communicators and their families-, this is the year to join USSAAC
Now is the time to renew or join for the first time the United States Society of Augmentative Alternative Communication. This is one of the only organizations that professionals that work in the AAC field and communicators and their families work side by side to promote a better life for people with complex communications needs. Families and communicators under represent USSAAC yet they have the most to gain by a large and active organization. The yearly membership cost is $40.00. Your membership includes access to excellent webinars on related AAC topics. You receive reduced rates to affiliated AAC conferences. Your membership includes membership to the international organization called ISAAC. Feel great knowing that you are a member of an organization that has replaced communication devices for some when their devices were damaged or lost in a natural disaster. Read the member stories, ussaac.org
USSAAC works to increase AAC awareness and advocates for access to devices by challenging unfair practices. So make this the year your join USSAAC. Go to ussaac.org and click on the membership tab.
Let’s get reading!
Mike and I have always enjoyed reading. Children of all abilities benefit from reading. Increased exposure to language helps with reading, writing and overall ability to understand more language. Books about children with different abilities can educate and increase awareness. The seventh graders at Mike’s former middle school were reading Out of my Mind by Sharon Draper. The main character has CP and the beginning chapters revolve around her obtaining a communication device. Her class and teachers discover how smart she is. The entire seventh grade read the book. One of Mike’s former teachers thought Mike was just the person to talk to the class about the book. As the students read the book, they generated questions about living with CP and about communicating with a device. Mike met with the students to answer their questions. What a great opportunity to increase awareness. Actually we met one of those students years after and she talked about what she learned by reading the book.
Here are some titles and mini reviews of books with a character or story line relating to complex communication needs or communication device. It was put together so adults and kids who use a device can feel connected to others by reading about characters that also use devices.
On Being Sarah is geared for sixth grade and up. The author is Elizabeth Helfman and Lina Saffioti. This book is about a twelve-year-old girl who has CP and uses a low-tech cardboard communications system. The book utilizes Charles Bliss symbol system throughout. The book zones in on Sarah’s feelings and frustrations with thoughts (which are set in italics). Sarah finds a true friend in Maggie who learns her symbol system.
How Katie Got Her Voice is geared for first grade and up. Author is a speech therapist, Patricia L. Mervine. Katie is starting at a new school where everyone has nickname, but Katie’s feels different. She cannot walk or talk. The school bans together to come up with a way to include Katie. The book is great for a class discussion with its twelve tips on how to talk with someone with different abilities.
How can I condense our 18 year journey with Alternative Augmentative Communication AAC into a few paragraphs? I could write a book about the process of obtaining a device, incorporating it into the norm, and the impact it has in our son’s life.
Our AAC story starts after a car crash in 1997 when our 2-year-old son sustained a traumatic brain injury. As time went by we had to accept that Brett was permanently disabled, cognitively challenged, and non-verbal. Even with rigorous therapy Brett was unable to regain the ability to sit without support, walk, self-feed or speak. We had to find alternative ways for him to function in society.
It was immediately evident that we had to find a way for him to communicate. He was evaluated by the University of Wisconsin Stevens Point (UWSP) Communicative Disorders Program for a voice output communication device and by age 4 and had his first DynaVox voice output device. Progress was slow in the beginning with many obstacles to overcome, but eventually Brett learned to communicate with his AAC device.
Our ability to communicate is the essence of who we are and it has been a joy to watch Brett connect with others. Brett is employed at the UWSP Museum of Natural History as a Docent (tour guide) and can tell a story at each Diorama/window display. He is a public speaker and shares his life story about living with a traumatic brain injury at conferences, and classrooms.
Two years ago Brett moved out of the family home to live in an apartment with 24 hour care providers. He loves to spend time with his girlfriend Annie and his many friends. Within a few minutes of meeting Brett you will learn that he is crazy about Monster Trucks and NASCAR racing, due to the pages of information and stories about his favorite things on his device. He can light up a room with his smile and get a good laugh with a joke from his joke page. AAC has been a huge asset to Brett’s life and we look forward to what the future holds with the advancement of technology.