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Table 10 General Recommendations for the Education and Socialization of Children with A-T

From: Ataxia telangiectasia: a review

• All children with A-T need special attention to the barriers they experience in school. In the United States, this takes the form of a formal IEP (Individualized Education Program).

• Children with A-T tend to be excellent problem solvers. Their involvement in how to best perform tasks should be encouraged.

• Speech-language pathologists may facilitate communication skills that enable persons with A-T to get their messages across (using key words vs. complete sentences) and teach strategies to decrease frustration associated with the increased time needed to respond to questions (e.g., holding up a hand) and inform others about the need to allow more time for responses. Traditional speech therapies that focus on the production of specific sounds and strengthening of the lip and tongue muscles are rarely helpful.

• Classroom aides may be appropriate, especially to help with scribing, transportation throughout the school, mealtimes and toileting. The impact of an aide on peer relationships should be monitored carefully.

• Physical therapy is useful to maintain strength and general cardiovascular health. Horseback therapy and exercises in a swimming pool are often well-tolerated and fun for people with A-T. However, no amount of practice will slow the cerebellar degeneration or improve neurologic function. Exercise to the point of exhaustion should be avoided.

• Hearing is normal throughout life. Books on tape may be a useful adjunct to traditional school materials.

• Early use of computers (preschool) with word completion software should be encouraged.

• Practicing coordination (e.g. balance beam or cursive writing exercises) is not helpful.

• Occupational therapy is helpful for managing daily living skills.

• Allow rest time, shortened days, reduced class schedule, reduced homework, modified tests as necessary.

• Like all children, those with A-T need to have goals to experience the satisfaction of making progress.

• Social interactions with peers are important, and should be taken into consideration for class placement. For everyone, long-term peer relationships can be one of the most rewarding parts of life; for those with A-T establishing these connections in school years can be helpful.