Providing Information About Stuttering To Families Using the Internet
About the presenter: J. Anthony Wray operates a private practice with offices in London and St. Catharines, which focuses primarily on stuttering prevention and treatment of preschool and school-age children. He holds a Master of Arts in Speech Pathology from the State University College of New York at Geneseo and a Bachelor of Arts in Psychology from the University of Western Ontario. He has previously held a position as a Clinical Supervisor and Honourary Lecturer in the Department of Communicative Disorders at the University of Western Ontario. He has hosted the Stuttering Prevention web site since 1996.
Providing Information About Stuttering to Families Using the Internet
by Tony Wray
from Canada
Background
In August 1994, I attended the First World Congress on Fluency Disorders in Munich. While in Munich, I noted two things: one provided a snapshot of how undeveloped the Internet was in 1994 and the other foreshadowed the great potential of the Internet. First, I noticed that there were very few people, working outside of a university setting, with email addresses. Today it is difficult to recall a time when every household did not have a telephone. Now it is considered unusual if someone does not have access to an email address. Second, during a visit to a telephone store in Munich, I discovered some of the early models of video telephones. After seeing these devices, I envisioned a world where people could exchange information via video images.
In 1994, the early Internet-users were sending emails, subscribing to LIST-SERV groups, such as STUTT-L and STUTT-X, and were visiting newsgroups, such as alt.support-stuttering. Even though the graphic-based World Wide Web had not yet made its appearance, everyone was primed for this new way of exchanging information, which was just on the horizon.
Since 1992, my private practice in London, Ontario, Canada, has focused on educating parents, family physicians, and early childhood educators about the importance of early identification and intervention for young children with disfluencies. I developed a parent information seminar "Stuttering can be prevented… if detected early". More than 200 families and early childhood educators have attended a free information seminar during the past eight years.
Stuttering Prevention Web Site
In 1996, I designed and launched the "Stuttering Prevention" web site, (URL http://www.prevent-stuttering.com/) as a way of expanding my audience for the parent information seminars. The information on the web site also targeted parents of children exhibiting disfluencies, who were between the ages of two and five years. These web articles dealt with issues ranging from "Normal Nonfluency" to "Warning Signs of a Child at Risk for Developing Stuttering". There were also some basic suggestions on "Ways to Help Reduce the Speaking Demands" for a disfluent child. The information on this site was based on generally accepted practices and information, which speech-language pathologists were commonly providing to parents.
During the past four years, thousands of parents have visited the web site. I have received hundreds of email from parents in response to the information provided at my web site. Most of the emails I have received can be categorized into one of the following types, each requiring a different response:
- When a parent of a young child having disfluencies asks specific or general questions about their child’s disfluencies, I attempt to respond the specific questions. Most of these questions pertain to a parent’s wondering about whether their child’s disfluencies are typical (i.e., normal nonfluencies) or whether a speech-language pathologist should see their child. Similar to how speech-language pathologists handle telephone inquiries about the same issues, I explain to parents some of the warning signs to look for, and through a series of emails, help them determine whether they should consult with a speech-language pathologist in their own community. Generating these types of inquiries was the primary purpose of my web site.
- Occasionally, when a parent asks a very specific clinical question about their own child’s condition, I explain that it would be impossible to answer their question without having assessed the child. I usually encourage these parents to contact a speech-language pathologist in their own community.
- When a parent asks for more resources about early childhood stuttering, such as the video-tape for parents produced by the Stuttering Foundation of America, I provide the parent with the web site address for the Stuttering Foundation of America.
- When a parent of a child who stutters asks for "the name of a good speech-language pathologist" (usually in the U.S.A.), I direct them to the web site address for the Stuttering Foundation of America.
- When a parent of a young child having disfluencies already seen by a speech-language pathologist, seeks a second opinion, I will answer most general questions and some specific questions. However, when a parent asks me to evaluate the recommendations or treatment of another clinician, I will re-state my general suggestions, and explain to the parents that I cannot comment without having assessed the child.
- When a parent of a school-age child who is stuttering asks for information about stuttering treatment, I will usually direct the parent toward the Stuttering Home Page. Despite having more than ten years of clinical experience working with school age children who stutter, my web page focuses on the prevention of stuttering, through early identification and early intervention. There are hundreds of resourceful place and people on the Internet focusing on school-age children who stutter.
- When a school-age child who stutters asks for help with their stuttering, I will usually direct them toward the children or teen area of the Stuttering Home Page.
- When an adult who stutters asks for help with their stuttering, I will usually direct them toward a specific area of the Stuttering Home Page.
- When a speech-language pathologist, treating a child who stutters, asks for advice about the child, I will attempt to offer some general suggestions, depending on the clinician’s ability to explain the details via email.
- When a parent or professional comments on the contents of the web site, I am always happy to respond to their feedback.
- When a colleague or an organization requests a mutual link to my web site, I will usually consider the requests. However, when a web site provides a link to another site, many visitors will interpret the link as an approval of, and even a recommendation for the linked site. I will not typically provide a link to a web site, which promotes a consumer product, unless I have professional experience with it and fully endorse it, such as the product line of the Stuttering Foundation of America.
- When a company or consultant solicits to help my business or web site receive more visitors, I delete the message, and consider it a by-product of doing business on the Internet.
Like many web sites, my web site has been re-designed and expanded since it was initially designed. I have added several articles, which had appeared in a regional parenting publication; these articles dealt with many aspects of stuttering and even some general speech-language development topics. I also included several links to other sites focusing on stuttering (i.e., Stuttering Home Page, Stuttering Foundation of America), other professional association sites (i.e., ASHA), and other sites with educational and recreational information for parents and children. I also posted the locations and dates of any future parent information seminars on my web site.
The Future…
The Stuttering Prevention web site has been waiting for technology to catch up with my original vision for sharing this information. The web site will eventually provide QuickTime™ video samples of normal nonfluencies, atypical disfluencies and warning sign behaviors, in addition to the text-based descriptions already provided. The 90-minute Parent Information seminar ("Stuttering can be prevented… if detected early") will be available online, for parents to either download or to view online via streaming technology.
Several university clinics are beginning to research the efficacy and cost of video-conferencing as a form of assessment and treatment for clients in remote communities. Since 1997, I started exploring internet-based video-conferencing as a way of providing information to parents in a manner with more human-interface than text-based email or chat. As bandwidth becomes more affordable for the average household, and processor speeds increase, video-conferencing will continue to develop of as a better mode for transmitting information to parents.
The Internet has provided a tool for sharing crucial information about early identification and intervention of childhood stuttering with parents from all around the world. Many of these families may not have been able to access professional information about this topic.
September 1, 2000
