Title

AN OPEN LETTER TO OUR PARENTS: What We Wish You Had Known

Document Type

Document

Publication Date

1994

Abstract

This letter, composed by a group of people with Usher Syndrome who meet weekly at the Helen Keller National Center, advises parents to inform their children with Usher Syndrome about their disability, what it is called, that it is genetic, and that it can get progressively worse. The stress and embarrassment produced by symptoms of their condition in the teenage years (night blindness, clumsiness, difficulty in poor lighting) and the insensitivity of teachers unknowledgeable about the condition is discussed. None of the contributors received special services before age 17 and they feel that orientation and mobility training should start earlier with parents' support. They advise parents of deafblind children to learn and use sign language and to insure that their children learn tactual sign, sign tracking techniques, and Braille while they are still in school and before they actually need it. They also discuss the emotional ramifications of diagnosis and worsening vision: anger, frustration, and depression, sometimes suicidal, and stress that it is important that parents learn how their children feel and earn their trust by being honest with them about their condition. Available in Spanish. USHER FAMILY SUPPORT

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