a Child with Albinism: A Guide to the School Years, National Organization for Albinism and Hypopigmentation (NOAH). East Hampstead, NH: NOAH, 2015,349 pp. Paperback, $29.99 a Child with Albinism: A Guide to the School Years is a companion volume to a Child with Albinism: A Guide to the Early Years, which was published by the National Organization for Albinism and Hypopigmentation (NOAH) in 2004. Like its predecessor, A Guide to the School Years contains a wealth of valuable information, tips, and insights that will be a useful resource to parents, professionals, and young people with albinism. Indeed, there is also much information in this text that applies to young people with other forms of visual impairment. The text has 15 chapters and 15 contributors. There are sections on family; health; education, both at school and at home; leisure and recreation; and the transition to adulthood. PORTRAITS AND PHOTOGRAPHS ILLUSTRATE AGE RANGES AND TOPICS The most immediately striking thing about this book is its wonderful gallery of portraits of young people with albinism. There are tiny tots, schoolchildren getting up to mischief, reflective or active teenagers, and confident young adults, all captured by the exceptional skill of Rick Guidotti of Positive Exposure and other photographers. Additional photographs illustrate some of the book's topics, such as low vision devices, orientation and mobility training, sports activities, and eye examinations. ORGANIZATION In Section 1, Raising a Child with Albinism, Sheila Adamo, a licensed clinical social worker, addresses some fundamental issues for parents of children with albinism. She considers how to gain perspective on the condition, make appropriate and reasonable demands on the growing young person, foster self-esteem and responsibility, and provide due care and attention to siblings. In Section 2, For the Health of your Child, Rick Thompson, an optometrist, and Matt Bailey, a professional with albinism, have chapters on vision and other health matters, such as skin care, sun protection, and eye examinations. Thompson provides the technical information parents need, and Bailey explains what the experience of vision is like for people with albinism. He points out that even without the visual detail that others can see, a child with albinism can still enjoy the beauty and richness of color and form. Donna Appell, a registered nurse and founder of the Hermansky-Pudlak Syndrome (HPS) Network, writes in Chapter 4 about the importance of screening for this rare variant of albinism. Once diagnosed, HPS can be managed, and those who have it can have active, healthy, and fulfilled lives, but it can be dangerous if undetected. Unexplained bruising or nosebleeds can be an early sign of the condition. Certain common medicines such as aspirin are contraindicated for individuals with HPS, so it is important to provide a full medical profile to all professionals who work with children who have HPS throughout the school years. In Section 3, Navigating the Educational Journey, Rebecca Coakley, a certified low vision therapist, addresses school choices at different stages; accommodations that might be made for a child in school; and the use of nonoptical devices like reading stands, sun visors and hats, low vision devices, and assistive technology. Kimberley Avila, a teacher of children with visual impairments, writes in Chapter 6 about the individualized education program (IEP). Parents will find, having read this chapter, that they can contribute to the all-important IEP meeting with confidence and be well-informed as they address issues of importance to their child. Kelly E. Lusk and Anne L. Corn, university lecturers and specialists in the field of visual impairment, write jointly in chapters 7 and 8 about educational assessments and the expanded core curriculum (ECC). Children with albinism may be assessed for functional vision (which can vary greatly from one child to another) or learning media (which might involve decisions regarding the use of print, braille, or both). …
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