Magazine article The Exceptional Parent

Part 4 Can We Talk?

Magazine article The Exceptional Parent

Part 4 Can We Talk?

Article excerpt

INDIVIDUALS WHO USE AUGMENTATIVE AND ALTERNATIVE COMMUNICATIONS SPEAK OUT

The first three parts of this series have focused on parents' perspectives on AAC. In this final installment, however, people who use AAC devices share their thoughts and experiences so that parents and professionals may learn from them.--The Editors

Jean Made Quirk, 32, of Ft. Worth, Texas, is the youngest of four children and has cerebral palsy. She is unable to walk, talk, or even sit without assistance. "When I was born, the doctors told my parents not to expect too much from me because I had cerebral palsy," Jean Marie remembers. "They even told my parents that they should just put me in an institution and get on with their lives!"

Instead, Jean Marie's parents took her home. Among the other challenges they had to meet, Jean Marie and her parents had to negotiate the world of assistive technology and augmentative and alternative communication devices. Today, Jean Marie communicates using a laptop computer with special communication software. She has graduated from high school and moved out into a home of her own. "I wish those doctors could see me now!" beams Jean Marie.

Augmentative and alternative communication (AAC) is not familiar to most families. Parents are sometimes left to persevere on their own to find a communication method for their child, just as Jean Marie's parents had to. Five individuals who use AAC and one parent of a child who uses AAC have shared their personal experiences and opinions so that other AAC users, parents, professionals, and manufacturers can learn from them.

What I wish my parents had known about AAC

According to the American Speech-Language-Hearing Association (ASHA) in Rockville, Maryland, augmentative and alternative communication "refers to all communication that supplements or augments speech." AAC covers a broad range of techniques and strategies, from simple picture boards to sophisticated, computer-based communication devices with synthetic voices. Other examples of augmentative and alternative communication may include facial expressions, gestures, body postures, eye-gaze, sign language, drawing, and writing.

For Randy Hastings of Texarkana, Texas, AAC was initially a paperboard with pictures drawn on it. "I was born with cerebral palsy seventeen years before the Individuals with Disabilities Education Act (IDEA) was passed. Because I couldn't talk, I wasn't allowed to attend public school. Instead, I attended a special treatment center from the age of 6 until I was 16," recalls Randy. "After IDEA was passed in 1975, I finally entered the public schools. I was given a headpointer that I wore like a baseball cap and a manual communication board with Bliss symbols (Editor's Note: Bliss symbols, or Blissymbolics, use graphic symbols, many of which are geometrical shapes and lines, which can be combined in sequences to depict meaning.) My parents spent hours teaching me how to point to those symbols to say what I wanted to say."

Jon Feucht of Whitewater, Wisconsin, had a similar introduction to AAC. "Prior to the time that I was 20, I used a word board which I had to have people read over my shoulder as I pointed to each word."

Fortunately for Randy and Jon, their parents did not stop searching for a better communication system. "What I think parents need to know is to never give up on trying to find the perfect communication system for their child," says Jon. "I tried almost every communication system on the market and nothing worked. I almost gave up before discovering the right device. It took me 20 years to find mine, but I now can use it for the rest of my life."

Seventeen-year-old Daniel Klauditz of Toms River, New Jersey, also cautions parents to look at everything that might affect their child's communication, and that includes positioning. Daniel, who has cerebral palsy, spends most of his day in a wheelchair. …

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