Fragile X

The Association has an extensive collection of books, videos, CD’s and DVD’s and we are adding books all the time. The printed booklets titled “Explaining Fragile X Syndrome” are available free of charge to members to distribute to family, friends and community.

Members of the Association who would like to borrow a book or video should send a completed Borrowing Request Form to us along with the deposit amount payable by cheque or credit card. Books and videos may be borrowed for one month. The cheque/credit card transaction will be held at the office and not processed unless the book is lost or damaged. The deposit will be sent back to you upon return of the library borrowing.

Books which have a bibliography have an asterisk after the publishing details. Some books are available for purchase, see note at the end.

Title	Author	Publisher	Deposit
Boys with Fragile X Syndrome	O'Connor, R	The National Fragile X Foundation, 1995	A$15
From the Fragile X Awareness Series for Children, this book is intended to help children and families understand and explain the different features many boys with fragile X syndrome display. A colourful story book, it is an ideal way to help siblings and classmates discuss and understand fx.
The Broken Toy	Marilyn Morgan	Authorhouse 2005	A$15
This short book tells the story of a mother’s fight to gain the best for her son with fx. Dan was born in 1977 and the book takes us through the various stages of his life and an honest picture at the end of a young man who has achieved much despite his deficits.
Children with Fragile X Syndrome: A Parent's Guide	Weber, J. D.	Woodbine House, 2000. *	A$40
Written by leading practitioners and parents for families, teachers and other professionals working with children with fragile X syndrome. Up-to-date information helps families adjust and understand their child's strengths and weaknesses. It includes some useful chapters on parental emotions, family life, diagnosis, genetics, education.
The Clinician
The Association is now being sent issues of a journal called The Clinician, which is published by the new South Wales Child and Adolescent Mental Health Statewide Network.
Curriculum Guide for Individuals with Fragile X syndrome	Braden, Marcia L	Revised Edition	A$40
This unbound curriculum guide was developed to assist parents, school staff and clinicians in creating an appropriate educational blueprint for individuals with fragile X. It includes a developmental progression of skills, teaching strategies and behavioural programming.
Disability Discrimination Legal Centre, NSW.			No charge
We have a lot of informative material published by the NSW Disability Discrimination Legal Centre Inc. about the legal rights of persons with disabilities in NSW. Included is a format for making a written complaint about disability discrimination under either the Commonwealth Disability Discrimination Act or the New South Wales Anti-Discrimination Act.
Educating Boys with Fragile X Syndrome: A Guide for Parents and Professional	Spiridigliozzi, G.A., Lachiewicz, A.M., MacMurdo, C.S., Vizoso, A.D., O'Donnell, C.M., McConkie-Rosell, A., Burgess, D.B., Child Development Unit	Duke University Medical Centre, 1994 *	A$15
This excellent booklet provides information and ideas to parents, educators and therapists who work with boys with fragile X syndrome. It is of great value in the initial development of an appropriate education programme for these children.
Educating Children with Fragile X Syndrome	ed. Denise Dew-Hughes	RoutledgeFalmer, 2004	A$45
While the focus is on education, a wider perspective is presented to support the main theme. The contributors, who are drawn from the most prominent experts on the syndrome, tackle education and related issues and suggest strategies from a practical standpoint.
Educational Files Volumes 1 & 2	The National Fragile X Foundation, USA		A$40
These files are prepared by the National Fragile X Foundation (USA) through the collaborative efforts of numerous physicians, researchers, clinicians and parents, all with first hand involvement in fragile X syndrome. *Highly recommended.*
Fragile: Handle with Care: Understanding Fragile X Syndrome	Braden, Marcia L	1996	A$40
This is an exceptional book written by a master in the field of special education and behavioural psychology. Combining case studies and a handbook approach, the author gives us insight and understanding of the behavioural and cognitive profile that constitutes fragile X. Specific behavioural management and learning strategies are presented in a highly accessible manner. *Highly recommended.*
Fragile: Handle with Care: - More about Fragile X Syndrome - Adolescents and Adults	Braden, Marcia L	Spectra Publishing Co. Inc., 2000	A$40
An updated version of Handle with Care.
Fragile X Fragile Hope: Finding Joy in Parenting a Child with Special Needs	Elizabeth Griffin	Emerald Books, 2005	A$30
This is a new publication by Elizabeth Griffin, who has a son with fragile X and autism. Many negative aspects of the journey from diagnosis to acceptance, such as chronic stress, sleep deprivation and the hurtful lack of awareness exhibited by relatives and friends, are discussed. Towards the end of the book the mood lightens – the final chapter is ‘When did life get to be so good?’
Fragile X Syndrome: Diagnosis, Treatment and Research	Hagerman, R.J. & Cronister, M.S., 2nd ed.,	John Hopkins University Press, 1996. *	A$80
This superb 480 page book is a must for the professional with any interest in fragile X syndrome. Topics covered in the first part of the book include epidemiology and the associated cytogenic and molecular findings, present research regarding protein studies and neuropsychology of the fragile X syndrome. The second part covers treatment and management strategies including genetic counselling, medical follow up, pyschopharmacology, psychotherapy, education, occupational therapy, speech and language therapy and protein and gene therapy. *Highly recommended.*
Fragile X Syndrome: A Guide for Teachers	Saunders, Suzanne	David Fulton Publishers, London, rev. ed. 2001. *	A$40
This English book, by a lecturer in Special Education at Oxford, gives a comprehensive coverage of issues which arise when children with Fragile X syndrome go to school. Optimum classroom conditions and teaching strategies are discussed, as well as social and behavioural development.
Fragile X Syndrome: A Handbook for Families and Professionals	Finucane, B., McConkie-Rosell, A and Cronister, A.	Elwin Inc., 1993	A$5
This revised edition includes all of the newest molecular information including diagnostic DNA testing and is an ideal first guide for families, counsellors, educators, carers and all those wishing to learn about fragile X syndrome.
An Introduction to Sensory Integration	Arkwright, N.	The Psychological Corporation, 1998	A$10
A thorough examination of sensory integration , including a discussion of the central nervous system, the vestibular system, the proprioceptive system and the tactile system. A clear explanation of how occupational therapy with a sensory integration approach can help your child.
Issues and Strategies for Educating Children with Fragile X Syndrome - A Monograph	Wilson, P., Stackhouse, T., O'Connor, R., Scharfenaker, S. and Hagerman, R.	Spectra Publishing Co., Inc., 1994. *	A$40
This 98 page educational monograph discusses specific medical issues, occupational therapy, speech and language therapy recommendations and strategies for a regular classroom situation. Accompanying video is available.
Justice for People with Disabilities: Legal and Institutional Issues	Hauritz, M., Sampford, C., Blencowe, S.	The Federation Press, 1998. *	A$33
The emphasis in this book is on legal rights, services to people with disabilities and on the social values which govern such relationships. Issues include affirmative action, the limits within which the law can promote the rights of people with disabilities, accessability and disability advocacy. Relatively technical and legalistic.
Lessons from my Child	Cindy Dowling, Neil Nicoll and Bernadette Thomas		A$30
The book comprises emotional snapshots written by parents of children with various disabilities. The stories reflect the many stages parents move through as they come to terms with their children’s disability. There is great honesty in the parents’ descriptions of parenting a child with special needs and encouragement for families with a recent diagnosis.
A Medication Guide for Fragile X Syndrome	Tranfaglia, M.R.	FRAXA Research Foundation, 1997	A$30
This wonderful guide by the founder of the FRAXA Research Foundation is intended to serve as background to help parents, carers and others to communicate with physicians regarding medication. The medications are only to be used under the supervision of a qualified physician and almost all are available only by prescription.
The Out-of-Sync Child: Recognizing and Coping with Sensory Integration Dysfunction	Kranowitz, C.S.	Skylight Press, 1998. *	A$30
An accessible, clearly written guide to Sensory Integration Disfunction which provides detailed, practical help for children with this problem. Covers areas such as over or under-sensitivity to touch, smell, sound, sight and movement, unusually high or low activity levels and problems with motor coordination.
Professional Collaboration with Parents of Children with Disabilities	Louise Porter and Susan McKenzie	Whurr Publishers, 2000	A$55
Directed at professionals who deal with children with disability, the thesis of this book is professional accountability to children and their parents. The vision is that when professionals collaborate with parents, they feel confident in the professionals’ skills and the relationship between them will bring all the benefits of a collaborative one and none of the disadvantages of a dependent one. Although rather technical, recommended reading for parents as well as professionals.
Promises, Promises	Clear, M.	The Federation Press, 2000. *	A$39
A discussion of the modern commitment of Australian governments and communities to the principle of equal participation in society of people with disabilities. Have promises been fulfilled and how effective have structural changes been?
The Lifeskills Higher School Certificate	New South Wales Board of Studies, 1999.		A$12
The Lifeskills Higher School Certificate is a program of education up to Year 12 designed for students with an intellectual disability in NSW. Single copies of the eight Stage 6 Lifeskills Higher School Certificate syllabuses are now available.
The Lifeskills syllabuses are : Citizenship and Society, Creative Arts, English, Mathematics, Personal Development, Health and Physical Education, Science Technological and Applied Studies, Work and the Community
Vocational and Educational Training (VET) syllabuses	New South Wales Board of Studies, 1999.		A$12
The syllabuses are : Business Services (Administration), Construction, Information Technology, Metals and Engineering, Primary Industries, Retail Operations, Tourism and Hospitality. There is an accompanying CD Rom, Stage 6 Special Program of Study: Life Skills Courses and Support Materials, which may be borrowed for $30.
One Day at a Time: Children with a disability - Family experiences	Sue Davies	Kurrajong Early Intervention Service, 2001	A$15
Relates the experiences of parents of children with a range of disabilities who are receiving assistance from the Kurrajong Early Intervention Service, Wagga Wagga, NSW. In 1998 parents told their own stories on different aspects of raising a child with a disability. In the revised version, parents update their original stories and give us an indication of how the children have progressed. Many histories concern autism and cerebral palsy. There is one story of a family with Fragile X.
Siblings	Kate Strohm	Wakefield Press, 2002	A$28
Siblings of children with special needs write their own stories. As well as the discussion of emotional issues, there are short sections on respite care, planning for the future, guardianship and estate planning. This is a valuable book which contains many insights and is not afraid to tackle sensitive issues.
What’s Wrong with Timmy?	Maria Shriver	Little Brown, 2001	A$30
A delightful essay about a young girl who befriends a boy of the same age who has an intellectual disability. Maria Shriver comes from a family whose awareness of intellectual disability has improved the lives of affected people world-wide – her mother, Eunice Shriver, founded the Special Olympics movement and her brother, Anthony Kennedy Shriver, founded Best Buddies. Suitable for young people up to adolescence.
When I'm Gone: An introduction to wills and estate planning for parents of people with an intellectual disability	Stephen Booth	Intellectual Disability Rights Service Inc., 1999. *	A$8.50
This short book includes chapters on making a will, choosing executors and trustees and ideas about how to divide up your property. Members who would like to purchase their own copy can contact the Intellectual Disability Rights Service, Level 1, 128 Chalmers Street, Surry Hills NSW 2010, tel. 02 9318 0144 (each copy $8.50). *Highly recommended.*
X Stories – The Personal Side of fragile X syndrome	Edited by Charles Luckmann & Paul Piper	Flying Trout Press 2006	A$30
A book of stories from people who have been touched by fragile X who tell in their own words how it has transformed their lives. Stories about family life before and right after diagnosis and stories that span generations, as fragile x carriers and fully affected individuals move into adolescence, adulthood and old age. There are contributions from our own Association Members Nicola Jones and Leonie Star. *Highly recommended for the newly diagnosed family.*

Title	Author	Publisher	Deposit
Fragile X Syndrome: the commonest inherited form of learning disability	The Fragile X Society ,UK	1998	A$40
This 20 minute documentary uses fly-on-the-wall footage to illustrate the wide-ranging effects of fragile X syndrome and shows the characteristic behaviours that provide clues for diagnosis.
Educational Intervention			A$20
This very short video illustrates a strategy for improving reading and for encouraging a student to face the teacher.
Educational Issues and Strategies for Children with Fragile X Syndrome	Hagerman, R.	National Fragile X Foundation, US	A$40
This video accompanies the monograph Issues and Strategies for Educating Children with Fragile X Syndrome. Randi Hagerman and other specialists present tactics for educating children with fragile X. The video, which includes molecular information and medication therapies, follows one child through a multidisciplinary evaluation. It then follows three children, in kindergarten, fifth grade and secondary school, through a typical day.
Fragile X Conference Video	International Fragile X Alliance	November 1997	A$35
Featuring leading experts from the USA. Randi Hagerman, Louise Gane, Jennifer Hills and Bill Sobesky present an overview of treatment and management strategies, counselling and vocational issues.
It's a Long Road	The Carers Association of Western Australia		A$30
The stories of four families with children with disabilities are told with honesty and courage. Included are comments by counsellors and practical helping strategies.
Processes Involved in Transitioning a Child with Fragile X Syndrome into a Mainstream Class at School	The Fragile X Association of Australia	1999	A$15
This is a video of a meeting held at Stanmore Public School, Sydney on 22-11-1999. It films a lengthy discussion among parents, primary school teachers, special needs teachers and teaching aides on the transition of children with fragile X into mainstream schools. It is set in an Australian educational setting with Australian participants.
Social Skills Training Model #2	Marcia Braden	October 2000	A$20
Children are filmed in an informal setting in Marcia Braden's house. They are shown conversing while relaxing and interacting with each other during play.

Most of the books and videos listed here may be purchased from the Fragile X Alliance in Victoria. All order form details can be found on their website, or contact the Fragile X Alliance on (03) 9528 1910.

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