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Syndromes & Conditions - Fragile X

BOOKS, VIDEOS & DVDS IN ACTIV LIBRARY - A SELECTION


Children with Fragile X syndrome: a parents' guide / Weber, Jayne Dixon. -- Bethesda, Md: Woodbine House, 2000. 460 p.

A comprehensive book for parents on fragile X syndrome written by leading professionals in the field and experienced parents. It provides up-to-date information to help families adjust, understand their child's strengths and weaknesses, and where to seek further help and expertise.

SC/FRA WEB [P09681]








Explaining Fragile X Syndrome / FRAGILE X ASSOCIATION OF AUSTRALIA. -- Mosman, NSW: The Fragile X Association of Australia Inc. 2005. 11 p.

A brochure providing an overview of Fragile X syndrome. Topics covered include genetics, physical features, developmental delays, behavioural and emotional effects, medical issues, speech, sensory integration, treatment and management strategies, education, genetic testing and counselling.

VERTICAL FILE - Fragile X Syndrome [P12147;P12146]








Females and Fragile X syndrome [DVD] / Braden, Marcia L. -- USA: National Fragile X Foundation, 2004. 1 DVD (20 min)

In this DVD, created by fragile x psychologist Dr. Marcia Braden, you will find scenes of females from pre-school through to adulthood. The genetic basis of fragile x females and inheritance is described along with interviews and scenes depicting girls and women in school, at play and at work. Throughout, a voice-over narration provides key points regarding the needs of females as well as the most appropriate interventions.

SC/V FRA FEM [P14842]










First down towards a cure for Fragile X / FRAXA RESEARCH FOUNDATION. FRAXA. Fragile X Research Foundation, 2006. 1 DVD (11 min.)

Families and professionals talk about their experiences of working with and caring for children with Fragile X syndrome and their hopes that research will find a cure within their lifetime.

SC/FRA FIR [P11601]










Fragile handle with care : more about fragile X syndrome : adolescents and adults / Braden, Marcia L.; Cole, Judy. / NATIONAL FRAGILE X FOUNDATION. -- Colorado Springs, Co: Spectra Publishing Co. 2000. 211 p.

Combining the expertise of a clinical psychologist and the experiences of parents of children with Fragile X syndrome, this book provides many insights into the behavioural and learning patterns of people with this disorder. Concentrating on adolescents and adults the book offers practical strategies on the different types of challenges that these age groups present. Issues in social development, sensory integration, behaviour, school and legal matters are discussed.

SC/FRA BRA [P11006]








Fragile: handle with care: understanding fragile X syndrome / Braden, Marcia L.; Cole, Judy. -- Chapel Hill: Avanta Publishing, 1996. 182p.

Views from parents and a doctor give an insight into the patterns of behaviour and learning which may be seen in children and adults with fragile x syndrome. A range of topics is covered including social development, sensory integration, schooling, adolescence and adulthood. Practical strategies and activities are outlined. This is one of a number of books that have been lodged in ACTIV Library on behalf of the Fragile X Support Group of WA.

SC/FRA BRA [P08587;P08588]








Fragile X - A to Z : a guide for families / Langan, Mary Beth, Ed.; Nantais, Sally, Ed. -- Newburyport, MA: FRAXA. Fragile X Research Foundation, 2006. 145 p.

An alphabet guide discussing the daily challenges of living with a child with a disability. The topics discussed cover a broad range of issues from behaviour management, health, diagnosis, medical treatment, education, sensory integration, therapy and more. Written by families for families, this book is insightful and provides helpful strategies for overcoming problems that come up in everyday life.

SC/FRA FRA [P11268]








Fragile X Alliance Clinic Handbook / FRAGILE X ALLIANCE INC. -- North Caulfield, Vic: Fragile X Alliance, [1999] 50 p. ; 30 cm.

This is the most up to date Australian guide for professionals and families. Prepared by the Fragile X Alliance Clinic staff, topics include medical and genetic issues, speech and language strategies, occupational therapy and sensory integration, vision and hearing issues, the use of medications and behaviour management strategies.

SC/FRA FRA [P14841]








Fragile X - associated disorders (FXD) : a handbook for families, health care providers, counselors, and educators / Abrams, Liane J.; Weber, Jayne Dixon. -- Walnut Creek, Ca: National Fragile X Foundation, 2009. 20 p. ; 22 cm.

This handbook is for families, health care workers, counselors, educators, and all those wishing to learn about Fragile X - associated Disorders (FXD). It describes all three conditions in detail, including features and symptoms, genetic information, testing, and currently available treatments. This is available for download for personal use at http://www.fragilex.org/wp-content/uploads/2012/01/Handbook-FXD_3rd_Edition.pdf.

SC/FRA ABR [P14395]








Fragile X, fragile hope : finding joy in parenting a child with special needs / Griffin, Elizabeth. -- Lynnwood, WA: Emerald Books, 2005. 112 p.

This is the story of one mother's journey into despair and grief, after her son is diagnosed with Fragile X syndrome and autism, that eventually leads to joy and enlightenment. Offering hope to families of children diagnosed with a disability, the author discusses her struggles with unresolved grief, anger and fear that help her find healing and unconditional love.

SC/FRA GRI [P11016]








Fragile X Fred / Bassell, Julia; Weber, Jayne Dixon; Visootsak, Jeannie. -- Middletown, Conn.: 2015. 33 p. ; 21 cm.

This book aims to help people of all ages understand that although individuals with fragile X syndrome do have certain challenges, these challenges do not define them.

SC/FRA BAS [P15752]










Fragile X syndrome : an introduction / FRAGILE X SOCIETY. -- Great Dunmow, Essex: Fragile X Society, 2007. 27 p.

This booklet offers an introduction to Fragile X syndrome and explains the genetic factors leading to the syndrome, genetic testing and counselling, learning and behavioural difficulties, social issues and physical differences.

VERTICAL FILE - Fragile X Syndrome [P12131]








Fragile X syndrome : the commonest inherited cause of learning disability / FRAGILE X SOCIETY. -- Essex: Fragile X Society, 1998. 1 DVD (20 mins.) + 1 booklet (27 p.)

A documentary that explains the causes and effects of Fragile X syndrome. Provides information on diagnosis, physical differences, behavioural difficulties and the different type of services that can provide help for families.

SC/V FRA FRA [P10738]










Living with Fragile X -- Santa Cruz, Ca: ThinkMedia, 2007. 1 DVD (64 min.)

This documentary takes an intimate and moving look at the lives of several families who live with a member affected by fragile X syndrome. It explains what Fragile X, how it is passed on, and discusses the day-to-day challenges faced by those who have Fragile X, along with the challenges of parents and their concerns for the what the future holds. It also discusses the possibility of a cure, but then questions who decides what is best for an individual, and then then because an individual is different should they be �fixed�, and would they necessarily lead more fulfilling, happier lives? See http://www.livingwithfragilex.com/ for further information.

SC/V FRA LIV [P14756]










My brother has fragile X / Steiger, Charles. -- Chapel Hill, NC: Avanta Media Corporation, 1998. 22 p.

Written by the 8 year old brother of a child with Fragile X, this is a heartwarming story, very useful for explaining Fragile X to young siblings. This book also contains some information for parents about the syndrome, such as the characteristics of males and females with Fragile X, causes, treatments, and the positive characteristics of children with the syndrome.

SC/FRA STE [P10715]








My eXtra special brother : how to love, understand, and celebrate your sibling with special needs / Heyman, Carly. -- USA: aMuse Productions, 2003. 93 p.

The author is the sister of an older brother who has Fragile X syndrome. Her story offers support to any siblings who have a brother or sister with special needs. The book focuses on the positives of special needs children and how siblings can maintain a beneficial family relationship whilst overcoming the many challenges faced on the journey through life. Included in the book is a section on frequently asked questions about Fragile X syndrome.

SC/FRA HEY [P10717]








The source for Fragile X syndrome / Harris-Schmidt, Gail; Fast, Dale. -- East Moline, Ill.: LinguiSystems, 2004. 157 p.

This book provides a good overview and introduction to Fragile X Syndrome. It covers definition and diagnosis, physical characteristics, cognitive development - including general and specific abilities in boys and girls- speech and language development and sensory issues, behaviour and emotional issues, education and classroom strategies, biological basis, and future directions.

SC/FRA HAR [P10718]








Understanding Fragile X Syndrome : a guide for families and professionals / Carvajal, Isabel Fernandez; Aldridge, David. -- London: Jessica Kingsley, 2011. 109 p. ; 25 cm.

This book breaks down the complex science of this genetic disorder and provides the facts and advice that parents and professionals need to support individuals with Fragile X syndrome. It is a straightforward introduction that clearly explains the condition on both a practical and scientific level. With sections on diagnosis, symptoms and treatment, as well as discussions of various emotional and behavioural considerations, this guide covers all aspects of Fragile X syndrome, its implications,and the possibilities open to families affected by it. It also demonstrates that with the right therapies progress can be made and emphasises how music can be used effectively to promote communication, interaction, fine motor skills and responsiveness in children with the condition.

SC/FRA CAR [P14192]








What is Fragile X / FRAGILE X SOCIETY. -- Great Dunmow, Essex: Fragile X Society, 2006. 1 leaflet

This leaflet provides a brief description of Fragile X syndrome, covering causes, effects and diagnosis.

VERTICAL FILE - Fragile X Syndrome [P12134]








X stories : the personal side of fragile x syndrome / Luckmann, Charles W., Ed.; Piper, Paul S., Ed. -- Bellingham, Wash.: Flying Trout Press, 2006. 299 p.

Families give valuable insight into their experiences of living with fragile x syndrome. Stories explore family life before and after diagnosis and the many challenges that face individuals as they journey from childhood to adulthood and old age. Discusses the consequences of being a fragile x carrier, sometimes unknowingly, and the impact on families that share this inherited syndrome.

SC/FRA XST [P11661]