CD ROM PROJECT - A Resource for Children, Teachers and Parents

by Mark Irwin
Australia

The Problems

  1. Stuttering is still misunderstood. It is defined from the perspective of the listener who associates it with uncertainty, anxiety and lack of confidence in the speaker. It is not understood that the physical and emotional struggle to speak well takes a heavy toll on the speaker who often resorts to avoidance, substitution or circumlocution to avoid openly (overtly) stuttering. These facts mean the extent of the stuttering is often missed by teachers and parents. They either assume fluent speech will result when the child matures and confidence develops, OR they do not detect situation avoidance (eg. requests to a person in authority) and word substitution. It was felt the avoidance and substitution behaviour, which has been now been defined as covert stuttering, needed to be highlighted to teachers and parents.
  2. Many children who achieved fluency in their one to one meetings with their speech language pathologist, continue to struggle in a class room setting. It was felt a broader understanding of stuttering by teachers would enable them to manage stuttering recovery in their students and also enable them to collaborate more easily with speech pathologists.
  3. Only relatively few schools in the world have an appointed speech pathologist. In addition private speech pathology services are only available in relatively few countries. So for most children who stutter, teachers and parents are the only source of guidance and support. Therefore providing teachers and parents with current information and advice on stuttering management is a vital endeavour for the International Stuttering Association.
  4. Written information on stuttering is available but it is often poorly packaged. It can be either too scientific, or too general, or too cumbersome for the reader to find the specific information required. Furthermore it is often only appropriate to the region/state in which it was produced. Electronic information (the internet), while providing a slightly easier means to access specific details, is still not available to most children in the world.
The Project

At the World Congress in Ghent 2001 a meeting of interested individuals resolved to have the ISA work with member associations to produce and distribute through education systems world wide in 2004 a CD Rom containing information on stuttering of particular relevance to teachers.

Why a CD Rom?

A CD Rom was chosen rather than website development, because internet access was assumed to be available to relatively few schools throughout the world, whereas computer use was far more wide spread. A CD Rom meant information could be distributed more cheaply (saving printing and transport costs) and accessed in a more user-friendly way (saving time for time-poor teachers).

Why Focus on Teachers and Parents?

Professional speech therapy administered by specialists in their field is a service that, in world wide terms, relatively few can access or afford. Teachers in most countries are the only source of support outside the family and their ability to sensitively deal with the stuttering child in a group setting is fundamental to long term recovery. In those countries where speech therapists are available, teachers are often the referral source and must work with the speech therapist if the most effective treatment is to be provided. Parents need the same information as well.

Why 2004?

A time line was necessary and 2004 had previously been designated by the ISA the International Year of the Child Who Stutters (IYCWS). It was felt that cross fertilisation between the CD Rom project and the activities of the IYCWS, would be of mutual benefit.

Strategies

Outcomes

The first version of the CD Rom has been produced. It was developed by designers employed at Smart Media of Modbury, South Australia. It was presented and given to interested delegates of the 2004 World Congress of People Who Stutter which was held in Perth Australia. People from 26 nations attended this Congress. In America it is to be shown and distributed at the ASHA (America Speech and Hearing Association) Conference in November 2004. In Australia discussions have taken place with the Federal Minister of Disability Services with the view to national distribution through schools. (no resolution as of August 04.) In Spain it is being translated with the intention of distributing it to the Hispanic speaking countries of Central and South America.

Unfortunately in Africa in 2004 computer use is still not available to school children. (If a school does possess a computer it is used for administrative purposes only.) However Joseph Lukong from Cameroon and Moussa Dao from Burkina Faso have both, on behalf of their associations, been able to print and distribute to schools hard copies of some of the information contained on the CD.

Content

A huge boost to the project was achieved by adding some of the free access information previously collated by Judy Kuster for the 2003 online conference. Other boosts were the kind donation by Erik Lamens of his film "To Speak", the offering of the "Cracked Jar" story from Claudia Groesman, and the detailed information on Teasing and Bullying provided by Marilyn Langevin.

Content in the current version includes

As at the time of writing this report it is planned to have the CD on the ISA web site www.stutterISA.org

Availability

The CD will be available at the ASHA Conference in November. It is also available by donation to the ISA from Dr. Mark Irwin c/- ISA, 217-219 Payneham Rd. St Peters. SA 5069 AUSTRALIA. PH. +618 83620387 or FAX +618 83626020

A web version of the CD is also available at http://www.stutterisa.org/CDRomProject/

Acknowledgements

Those present at the first meeting in Ghent Belgium included Manfred Fitzner and Petra Schmiedecke from BSSV, Cherry Hughes and Rachel Everard from the BSA, Jaan Pill and Marlene Green from CAPS, Michael Sugarman from Friends, and Annie Bradberry and Judith Eckardt from NSA.

At that stage the German association, Bundesvereinigung Stotterer-Selbsthilfe e.V , had already produced a CD of their own, while the British Stammering Association were a few months from releasing their CD specific for use in the education system in Britain. The meeting was able to learn from their experience.

The ISA is also grateful to Claudia Groesman, Judith Kuster, Eric Lamens and Marilyn Langevin for their subsequent contributions. I appreciated chairing the first meeting (many stimulating ideas were generated) and have enjoyed developing this project since. I trust ISA member associations will be able to encourage and support each other to ensure the CD is distributed as widely as we had initially intended. There is still a lot to be done for children to relieve distress of stuttering.

You can post Questions/comments to any or all of the authors before October 22, 2004.
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