Ataxia Telangiectasia - Education and Socialization

Education and Socialization

Most children with A-T have difficulty in school because of a delay in response time to visual, verbal or other cues, slurred and quiet speech (dysarthria), abnormalities of eye control (oculomotor apraxia), and impaired fine motor control. Despite these problems, children with A-T often enjoy school if proper accommodations to their disability can be made. The decision about the need for special education classes or extra help in regular classes is highly influenced by the local resources available. Decisions about proper educational placement should be revisited as often as circumstances warrant. Despite their many neurologic impairments, most individuals with A-T are very socially aware and socially skilled, and thus benefit from sustained peer relationships developed at school. Some individuals are able to function quite well despite their disabilities and a few have graduated from community colleges.

Many of the problems encountered will benefit from special attention, as problems are often related more to “input and output” issues than to intellectual impairment. Problems with eye movement control make it difficult for people with A-T to read, yet most fully understand the meaning and nuances of text that is read to them. Delays in speech initiation and lack of facial expression make it seem that they do not know the answers to questions. Reduction of the skilled effort needed to answer questions, and an increase of the time available to respond, is often rewarded by real accomplishment. It is important to recognize that mental retardation is not regularly a part of the clinical picture of A-T although school performance may be suboptimal because of the many difficulties in reading, writing, and speech. Children with A-T are often very conscious of their appearance, and strive to appear normal to their peers and teachers. Life within the ataxic body can be tiring. The enhanced effort needed to maintain appearances and increased energy expended in abnormal tone and extra movements all contribute to physical and mental fatigue. As a consequence, for some a shortened school day yields real benefits.

General recommendations:

• 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 increase time needed to respond to questions (e.g., holding up a hand and others about the need to allow more time for responses). Rarely helpful are traditional speech therapies that focus on the production of specific sounds and strengthening of the lip and tongue muscles.
• Classroom aides may be appropriate, especially to help with scribing, transportation through 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 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 the most rewarding part of life; for those with A-T establishing these connections in school years can be helpful.