Briana S. Nelson Goff - Intellectual and Developmental Disabilities: A Roadmap for Families and Professionals

Intellectual and Developmental Disabilities

Intellectual and Developmental Disabilities provides a unique contribution not currently available in the professional literature by addressing the experiences and perspectives of families living with or raising a child with a disability. Designed for family therapists, social workers, and other helping professionals, it provides empirically based practical information for working with families experiencing intellectual and developmental disabilities of a loved one. This book also provides important information for navigating the various professional systems of care with which these families interface: health care providers, early childhood intervention teams, educational systems, the legal system, and financial planners.

Briana S. Nelson Goff, PhD, LCMFT, is a professor in the School of Family Studies and Human Services at Kansas State University. Dr. Nelson Goff received dual Bachelors of Science degrees in psychology and life science and a Master of Science degree in marriage and family therapy, all from Kansas State University. She completed a doctoral degree in marriage and family therapy from Texas Tech University.

Nicole Piland Springer, PhD, LMFT, is an associate professor practice in community, family, and addiction sciences (also remove comma after sciences), and the director of the Center for Family Systems Research and Intervention and the Family Therapy Clinic at Texas Tech University. Dr. Piland Springer received a Bachelor of Arts in psychology, a Master of Science degree in human development and family studies, and a doctoral degree in marriage and family therapy from Texas Tech University.

Intellectual and Developmental Disabilities

A Roadmap for Families and Professionals

Edited by Briana S. Nelson Goff and Nicole Piland Springer

First edition published 2018
by Routledge
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and by Routledge
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Library of Congress Cataloging-in-Publication Data
Names: Nelson Goff, Briana S., editor. | Springer, Nicole Piland, editor.
Title: Intellectual and developmental disabilities: a roadmap for families and professionals / edited by Briana S. Nelson Goff and Nicole Piland Springer.
Other titles: Intellectual and developmental disabilities (Nelson Goff)
Description: First edition. | New York: Routledge, 2017. | Includes bibliographical references and index.
Identifiers: LCCN 2017029013 | ISBN 9781138672451 (hbk : alk. paper) | ISBN 9781138672468 (pbk : alk. paper) | ISBN 9781315562490 (ebk)
Subjects: | MESH: Intellectual Disability | Family | Developmental Disabilities | Caregivers | Child | Adolescent | Adult
Classification: LCC RC455 | NLM WS 107.5.R5 | DDC 362.2dc23
LC record available at https://lccn.loc.gov/2017029013

ISBN: 978-1-138-67245-1 (hbk)
ISBN: 978-1-138-67246-8 (pbk)
ISBN: 978-1-315-56249-0 (ebk)

Typeset in Galliard
by Deanta Global Publishing Services, Chennai, India

Contents

BRIE TURNS, PHD, BRIANA S. NELSON GOFF, PHD, MARILYN MASTERSON, PHD, RN, JESSICA D. CLESS, MS, AND ADAM W. CLESS, MS

NICOLE PILAND SPRINGER, PHD, BRIE TURNS, PHD, AND MARILYN MASTERSON, PHD, RN

THOMAS KNESTRICT, EDD

JESSICA D. CLESS, MS, ELLEN BODINE, BS, ASHLEY EDELMAN, BS, LAURA FARKAS, BS, ADAM W. CLESS, MS, BRIANA S. NELSON GOFF, PHD, AND NICOLE PILAND SPRINGER, PHD

KAMI L. GALLUS, PHD AND JENNIFER L. JONES, PHD

JESSICA D. CLESS, MS AND CHRISTYNE STEPHENSON, MS

GAIL E. BENTLEY, PHD, MATTHEW D. BROWN, PHD, AND JASON B. WHITING, PHD

CAROLYN SHIVERS, PHD

SANDRA WOODBRIDGE, PHD AND LAURIE BUYS, PHD

KAREN SUMMAR, MD, MS

JENNIFER J. BEKINS, MS

GRACE FRANCIS, PHD AND SARAH NAGRO, EDD

Preparing for the Future: The Transition to
Adulthood and Beyond

MITZI K. LAUDERDALE, JD, CFP, MICHAEL C. WALTHER II, CPA/PFS, CFP, CFA, AND NICOLE PILAND SPRINGER, PHD

JENNIFER L. JONES, PHD AND KAMI L. GALLUS, PHD

MICHELE K. GOLDBERG, JD

ELIZABETH A. PERKINS, PHD AND LIEKE VAN HEUMEN, PHD

Briana S. Nelson Goff, PhD, LCMFT, is a Professor in the School of Family Studies and Human Services at Kansas State University. Dr. Nelson Goff received dual bachelors of science degrees in psychology and life science and a master of science degree in marriage and family therapy, both from Kansas State University. She completed a doctoral degree in marriage and family therapy from Texas Tech University. Dr. Nelson Goff and her husband have two children, Dalton and Gracyn. Dalton was diagnosed with Down syndrome at birth.

Nicole Piland Springer, PhD, LMFT, is an Associate Professor of Practice in Community, Family, and Addiction Sciences, and the Director of the Center for Family Systems Research and Intervention and the Family Therapy Clinic at Texas Tech University. Dr. Piland Springer received a bachelor of arts in psychology, a master of science degree in human development and family studies, and a doctoral degree in marriage and family therapy from Texas Tech University. Dr. Piland Springer has two children, Travis and Katarina. Katarina received a series of preliminary in utero diagnoses of cystic hygroma, hydrops fetalis, and intrauterine growth retardation, but was ultimately diagnosed with Down syndrome during the second trimester of the pregnancy via amniocentesis.

Drs. Nelson Goff and Piland Springer were doctoral students at Texas Tech University and, since 2010, have collaborated on research, workshops, and educational programs at their respective universities, as well as co-presented at national conferences. Their national research study focuses on the positive aspects of having a child with Down syndrome, titled, My Kid Has More Chromosomes than Yours!: The Journey to Hope and Resilience in Parenting a Child with Down Syndrome .

We started our doctoral program together at Texas Tech University in 1995. Little did we know after completing our degrees and starting our careers that just over a decade later we would be reconnected in another way, through an extra 21st chromosome. We had very different pregnancy experiencesNicole faced a series of difficult prenatal testing appointments and diagnoses, some of which were not typically compatible with life, along with recommendations from medical professionals to terminate the inevitable. Briana had a relatively uneventful pregnancy with Dalton, but soon after he was born, the doctor told her and her husband (first-time parents) that she suspected their son had Down syndrome. Several months after Katarina was born, one of Nicoles academic mentors mentioned their common experience with Down syndrome. An email followed from Nicole to Briana titled: Something Unique in Common . It is from that email that their research and ultimately this book was born.