Usher syndrome : about us, by us / Annmaree Watharow, Emily Shepard, and Emma Boswell

Format:

Book

Author/Creator:

Watharow, Annmaree, author.

Shepard, Emily, author.

Boswell, Emma, author.

Series:

Disability studies (Lived Places Publishing)

Disability studies

Language:

English

Subjects (All):

Usher's syndrome.

Usher's syndrome--Psychological aspects.

Deafblind people--Care.

Deafblind people.

Deafblind people--Family relationships.

Usher Syndromes.

Medical Subjects:

Usher Syndromes.

Physical Description:

1 online resource

Place of Publication:

Miller Place, NY : Lived Places Publishing, 2026

Summary:

"Few books for health and social care students, professionals, and practitioners are written by the very people impacted by a condition. Usher syndrome is a diverse collection of types, subtypes, and complexities. It has been called ‘a life of adjustments’, and this book unpacks these and explains how you can help support and communicate with us and others who live with Usher syndrome. The three authors all have lived experience, expertise, and knowledge of life with Usher syndrome for individuals, parents, families, partners, siblings, and supporters. Lived experiences inform and imbue each chapter. The lived expertise that comes from being clinicians, colleagues, researchers, peer supports, advocates, parents of, and parents with Usher syndrome directs content to reflect what the community wants you, the reader, to know about Usher: the basics, the genetics, diagnoses, diversity, extended family impacts, lifelong adjustments, downsides and upsides. We give the reader blueprints for better communication, better health and well-being, and solutions for everyday life. Usher syndrome is complex and challenging, but we are capable contributors when well supported. This book is strong evidence of this"-- Provided by publisher

Contents:

About us, by us

The Usher syndrome basics

Usher syndrome, genetics and more

Complexities and challenges of diagnosis

Parenting

Complexities of parenting children with Usher syndrome

Parenting 2: Parenting, psychosocial needs and perspectives

Siblings, spouses, offspring and supporters

Complexities of health and well-being for people with Usher syndrome, their families and careers

Complexities of health and well-being: Seeing things that aren't real

Communication 1: Relational aspects of language and assistive devices

Communication 2: Healthcare and the role of social-haptic communication

Communication 3: An interpreter's perspective x Usher Syndrome

Better health and well-being

Supports for better everyday living

Snapshots of diversity and capabilities in the Usher community

Notes:

Includes bibliographical references and index

Online resource; title from title page (publisher's site, viewed May 5, 2026).

Other Format:

Print version: Watharow, Annmaree Usher syndrome

ISBN:

9781917566131

1917566131

9781917566148

191756614X

OCLC:

1588633996

Access Restriction:

Some versions: Open access versions available from some providers open access