Adaptive Baby Care

Adaptive Baby Care Equipment: Guidelines, Prototypes & Resources
Kris Vensand, Judith Rogers, Christi Tuleja, Anitra DeMoss
(Through the Looking Glass, 2000) [86 pages with photos]
$15

For the past 10 years, Through the Looking Glass has been designing and fabricating baby care equipment for parents with disabilities, as well as studying the impact of such equipment on parenting. Very few items of adaptive baby care equipment are available on the market, and scarcity is compounded by the lack of universal design in equipment (i.e., products that are useful for caregivers with differing physical abilities). Because of the critical absence of adaptive baby care equipment, TLG is committed to developing and documenting creative baby care solutions.

This newest publication builds upon TLG's highly acclaimed Ideabook 1 (published in 1995), incorporating TLG's most recent and more extensive research on adaptive baby care equipment. This publication is presented as a catalyst for problem-solving regarding the development of adaptive baby care equipment. This newest publication is designed for parents, family members and professionals. It includes: guidelines for problem-solving baby care barriers; photographs and descriptions of prototypes and resources for adaptive baby care equipment; adaptive baby care techniques; adaptive baby care equipment checklist; commercial product safety commission guidelines; and local and national resources.

The following excerpt is taken from the newest publication:

"Individuals with physical disabilities have been successfully parenting for years, and the majority has been doing so without adaptive baby care equipment or professional guidance. Many parents have told us, however, that they would have preferred having the option of using adaptive baby care equipment and access to professionals who have experience with disabled parents. Although parents may accommodate to the lack of appropriate baby care equipment, most do so at the risk of increased stress, fatigue, and even secondary injury. For some parents, lack of adaptive baby care equipment has resulted in practical problems that may limit their roles in parenting and increase their need for personal care assistance or undesired reliance on nondisabled family members. In some child custody situations, the absence of appropriate baby care equipment has even compromised or undermined an appropriate evaluation of parental capability and the infant/parent relationship.

TLG initiated research to demonstrate the impact of adaptive baby care equipment for parents with physical disabilities. One finding was that when adaptive baby care equipment is available, it can significantly reduce parents' difficulty, pain, and fatigue while increasing satisfaction with baby care activities. Furthermore, this decrease in the physical demands of baby care has been associated with an increase in positive parent-child interaction. TLG speculates that this positive interaction was partially due to the increased proximity of parent and child, and that the decreased physical demands upon the parent enabled freer engagement with the child. In some cases, availability of adaptive baby care equipment can have an even more dramatic impact-making baby care possible for a parent or caregiver."
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Final Report: Continuation of Adaptive Parenting Equipment Development
Christi Tuleja, OTR, Judith Rogers, OTR, Kris Vensand, OTR, and Anitra DeMoss, Ph.D.
(Through the Looking Glass, 1998) [42 pages]
$5

The report is based on a multi-year research project to design, develop and modify adaptive parenting equipment and techniques for parents with physical disabilities, as well as to test and refine measures to assess the impact of adaptive babycare equipment. "Equipment development and its assessment can significantly impact the individual parent, the profession of occupational therapy, and the disability community. Specifically, the equipment allows the parent with a disability to assume a more active parenting role which can enhance parental confidence in parenting, the parent-child relationship, and the family unit."
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Babycare Assistive Technology
Christi Tuleja and Anitra DeMoss
[Technology and Disability, 1999) [8 pages]
$2

This article provides an overview of the baby care assistive technology work at Through the Looking Glass including a discussion of TLG's intervention model, the impact of babycare equipment and guidelines for equipment development. "For many individuals with disabilities becoming a parent can be thought of as the last frontier to conquer with respect to accessibility and equal rights. Babycare assistive technology allows parents with physical disabilities more choices in how they are involved in their baby's care, through the elimination or decrease of barriers in the environment."
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Babycare Assistive Technology for Parents with Physical Disabilities: Relational, Systems & Cultural Perspectives.
Megan Kirshbaum, Ph.D.
[AFTA Newsletter, 1997] [7 pages]
$2

This article examines the provision of babycare equipment through the lens of the infant/parent relationship, the lens of the family system, and through the lens of the culture. "It is important to recognize babycare equipment provision as a catalyst for rapid relationship change at a time when a family may be overloaded by changes related to the transition to parenthood and disability. In such situations, the seeding of small changes may have profound meaning, connoting possibilities and options that can be pursued at a family's own pace."
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Adaptive Baby Care Equipment Intervention for Parents with Physical Disabilities: Occupational Therapy School Curricula
Christi Tuleja, Judi Rogers and Megan Kirshbaum
$250

Few occupational therapy schools include the topic of parenting with a disability in their curricula, yet there are an estimated 8.4 million U.S. families in which one or both parents have a disability. The population who can utilize adaptive babycare equipment is increasing as individuals with disabilities (e.g., cerebral palsy, spinal cord injuries, multiple sclerosis) and older individuals choose to become parents. An increase in the occurrence of repetitive stress injuries adds to the clientele that will benefit from occupational therapy practice addressing adaptive babycare equipment.

Developed from over ten years of clinical experience and research, the module introduces undergraduate or graduate level occupational therapy students to the provision of babycare intervention for parents with physical disabilities. This field-tested three hour module is designed to be presented in two sessions. It includes a videotape of parents using adaptive equipment for babycare activities, copies of Adaptive Babycare Equipment: Guidelines, Prototypes & Resources and an administrative manual which includes classroom instructions, readings, discussion questions, case studies and an annotated bibliography.

Student Objectives:

• to examine socially held perceptions and personal feelings concerning parenting with a physical disability
• to understand that a parent's physical experience of doing a babycare activity may differ considerably from an observer's impression
• to become aware of the implications of family systems and cultural issues in intervention
• to consider both adaptive equipment and adaptive techniques as solutions to babycare barriers
• to problem-solve parents' babycare equipment needs
• to become aware of different approaches for different clinical situations (e.g., recent versus long term disability, stable versus progressive disability)
• to understand basic concepts in assessment, design and fabrication of adaptive babycare equipment
• to describe the potential impact of babycare adaptations on the infant-parent relationship, family systems and parent physical functioning
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Adoption

California Adoption Agencies: How Do They Assess Parents wiith Disabilities?
Michelle Estrada, MFT
(Through the Looking Glass, 1996) [33 pages]
$2

This report is based on an exploratory statewide study of California adoption agencies regarding assessment measures used to evaluate prospective adoptive parents. "One of the most imortant ways a decision maker's negative perceptions can affect a disabled person's life is in the realm of parenthood. As society has witnessed recently in well-publicized court battles, the issue of parents' fitness -- played out in either the custody or adoption context -- often is highly charged even when the issue of disabilities is absent...Unfortunately, the high degree of controversy inherent to the general issue of parental 'fitness' appears to have overshadowed or relegated to obscurity the particular concerns of disabled persons seeking to adopt children."
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You May Be Able to Adopt: A Guide to the Adoption Process for Prospective Mothers with Disabilities and their Partners
Linda Toms Barker, Megan Kirshbaum, et al.
(Through the Looking Glass, 1997) [112 pages]
$10

This handbook is designed to prepare persons with disabilities for the adoption process along with agency and internet adoption resources. "As a woman with a disability you may feel that adoption is not really an option for you, because you fear that adoption agencies will discriminate against you on the basis of your disability...Dealing with adoption eligibility criteria can be frustrating, burdensome, time-consuming and intrusive. Indeed, some adoptive parents question whether eligibility criteria should exist at all...Women with significant disabilities attempting to adopt need to be prepared to address a wide range of barriers that they might encounter and decide ahead of time how strongly they feel about their decision to adopt. To be successful with the adoption option may mean being prepared to deal with a variety of barriers."
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The Adoption Experience: A Prospective Guide for Parents with Disabilities and their Advocates.
E. Callow, J.D.
(2006) [29 pages]
$35

This guide is intended to help people with disabilities use the adoption process to grow their family. Whether pursuing domestic private, domestic public or international adoption, it is a very huge benefit to know the basic steps and participants in the process and what the law says about adoption and disability. This guide will give information about the adoption generally and specifically what parents with disabilities need to know and do to protect their right to adopt.
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Deaf Parents

Final Report: Adapting Through the Looking Glass' Intervention Model for Deaf Parents and their Children
Paul Preston, Ph.D. and Mimi Lou, Ph.D.
(Through the Looking Glass, 1997) [24 pages]
$2

The research report describes a one-year study in which TLG's model of peer-based early intervention was applied for the first time to high-risk families of deaf parents and their children. "Many deaf parents have raised their families successfully, and are inappropriately stigmatized because of misguided presumptions about their parenting capabilities. However, some deaf parented families are vulnerable to dysfunction, child abuse and/or neglect because of risk factors comparable to those within hearing families...For those deaf parents who need information or services, resources are virtually non-existent."
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Mother Father Deaf: Living between Sound and Silence
Paul Preston, Ph.D.
(Harvard Press, 1994) (278 pages)
$18

'Mother father deaf' is the phrase commonly used within the Deaf community to refer to hearing children of deaf parents. Based on a national study of adult hearing children of deaf parents and written by TLG staff member Paul Preston, the book explores the intimate intersection of families like his own - families which embody the conflicts and resolutions of two often opposing world views, the Deaf and the Hearing. "Although I have normal hearing, both of my parents are profoundly deaf. This book explores the lives of other people like myself -- hearing children of deaf parents. I begin with my father's story because it is part of my family history. It is one of the pieces that I know about a hearing grandfather long dead, and about my father as a young boy. Three generations -- my grandparents, my parents, and myself -- represent a twist in our family moebus strip: Hearing into Deaf into Hearing. Like most of the families described within this book, both grandparents and grandchildren are hearing -- yet, somehow different from each other...My goal in this book is not only to examine the lives of a particular group of men and women who shared a common childhood feature, but to understand how they made sense of that experience."
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On the Edge of Deaf Culture: An Annotated Bibliography of Hearing Children/Deaf Parents
Tom Bull
(Deaf Family Research Press, 1998) [360 pages]
$35

This annotated bibliography on hearing children of deaf parents contains over 2,200 references and over 800 annotations including books, journal articles, dissertations, newspaper and magazine articles, video, film and audiotapes. "Hearing children with deaf parents (codas) live half their life in the Deaf World and half in the Hearing World. They often wonder whether they are hearing or deaf. This identity conflict is not unusual for those raised in a bilingual and bicultural family, for those who grow up "hearing" in the Deaf World. In fact, it is typical of people who are raised with two or more cultures."
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Family and Disability Culture

Family Context and Disability Culture Reframing: Through the Looking Glass
Megan Kirshbaum, Ph.D.
(The Family Psychologist, 1994) [5 pages]
$2

This article provides an overview of the issues and guiding perspectives underlying Through the Looking Glass' eighteen years of work with families. "Families with disabilities vary on the degree of intergenerational negative suggestion regarding disability; however, bombardment with negative messages from the social sphere is the norm. The frequency and interspersed nature of these messages seems to create negative social induction that is particularly potent during vulnerable transition periods."
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Keeping our Families Together: A Report of the National Task Force on Parents with Disabilities and their Families
Paul Preston, Ph.D. and Margaret Jakobson, Esq.
[Through the Looking Glass, 1998] [12 pages]
$2

This report is based upon proceedings of the inaugural meeting of the National Task Force on Parents with Disabilities, convened by Through the Looking Glass at the conclusion of the first International Conference on Parents with Disabilities and their Families. "As Task Force members, we represent an interdisciplinary group of mothers, fathers, family members, professionals and advocates from diverse disability communities throughout the United States. The overwhelming majority of this newly created Task Force are parents with disabilities and family members. It is our unwavering demand that our families -- disabled parents and their children -- no longer remain invisible among the nation's families. Our overall mission is to promote social changes which will improve the lives of parents with disabilities and keep our families together."
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What Psychotherapists Should Know about Disability
Rhoda Olkin, Ph.D.
(Guilford Press, 1999) [368 pages]
$24

Written by staff member Rhoda Olkin, a psychotherapist, professor and mother with a disability, this book is a comprehensive volume which provides knowledge and skills that mental health professionals need for more effective, informed work with persons with disabilities. Defining disability as a minority experience rather than a medical problem, this book describes the effects of logistical, social, attitudinal, and legal constraints on the everyday lives of persons with disabilities. Providing a practical accont of how disability affects sexuality, romance, pregnancy, birthing, and parenting, the book explores key issues in the family life cycle and outlines principles for individual and family intervention. "I never, now or in the past, entertained the question of who I'd be without my disability, how my life would have been different, or how great it would be to be able-bodied. To me that's what 'living with a disability' means -- refraining from or ceasing to ask those questions. I believe the goal of treatment of persons with disabilities -- when the treatment focus is on the disability itself -- is to help people live with their disability."
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Legal Issues related to Parents with Disabilities (see also Adoption)

The Child Protective Services / Dependency Court Experience: A Guide for Parents with Disabilities and their Advocates
E. Callow, J.D.
(2005) 32 pages
$35

This guide is intended to help parents with disabilities and their advocates take as much control over the dependency process as possible. Whether representing themselves in court or being represented, it is a huge benefit to know the basic steps, involved people and organizations, and what parents can do to make the focus of the case clearer and preserve their rights. This guide will give information about the dependency case experience generally and specifically what parents with disabilities need to know and what actions they can take to protect their children and themselves.
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The Family Court Experience: A Guide for Parents with Disabilities and their Advocates
E. Callow, J.D.
(2005)
$35

This guide is intended to help parents with disabilities take as much control over the family court process as possible. Whether representing themselves in court or being represented, it is a huge benefit to know the basic steps, involved people and organizations, and what parents can do to make the focus of the case clearer and preserve their rights. This guide will give information about the child custody case experience generally and specifically what parents with disabilities need to know and what actions they can take to protect their children and themselves.
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Parents with Visual Impairments

Hands-On Parenting: A Resource Guide for Parents who are Blind or Partially Sighted
Debbie Bacon
(2006) [212 pages]
$40

This new 212 page Resource Guide provides a wide range of practical information, adaptations and resources for parents who are blind or partially sighted. The Resource Guide was developed by blind parent specialist Debbie Bacon, who is also a blind mother of three adult children. Ms. Bacon compiled the resources and suggestions from discussions with parents who are blind and partially sighted across the U.S. as well as in several other countries. Parents of a wide age-range of children describe their parenting experiences -- especially noting any barriers, strengths, adaptations or suggestions for other blind and partially sighted parents. This Resource Guide is intended to pass along successful adaptations and strategies so that new parents don't have to keep re-inventing the wheel. The topics covered in the Resource Guide include such issues as: newborns, when your child is sick, feeding, toilet training, transportation, monitoring your child, child safety, toys and games, and working with professionals. Each of the 14 chapters includes parent discussions as well as contact information for a wide variety of resources (many of which are available through the Internet).
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Pregnancy and Birth

The Disabled Woman's Guide to Pregnancy and Birth.
Judith Rogers, OTR/L
(Demos Press, 2006) [528 pages]
$25

Judi Rogers, TLG's Pregnancy and Birthing Specialist since 1989 and recipient of the 2002 Robert Wood Johnson Community Health Leadership award, has just revised and updated her previous book. The Disabled Woman's Guide to Pregnancy and Birth supports the right of all women to choose motherhood, and will be useful for any disabled woman who desires to have a child. This comprehensive guide is based on the experiences of ninety women with disabilities who chose to have children. In order to bring an intimate focus and understanding to the issues involved in being pregnant and disabled, Judi conducted in-depth interviews with women with 22 different types of disabilities and with a total of 143 pregnancies. This book is a practical guide both for disabled women planning for pregnancy and the health professionals who work with them.

The subjects covered include: an introduction to the ninety women and their specific disabilities; the decision to have a baby; parenting with a disability; emotional concerns of the mother, family and friends; nutrition and exercise in pregnancy; a look at each trimester; labor and delivery; caesarean delivery; the postpartum period; and breast-feeding. A list of references and a glossary will assist the reader in obtaining additional information and understanding medical terminology.
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Statistics on Parents with Disabilities

Final Report: Challenges and Strategies of Disabled Parents: Findings from a National Survey of Parents with Disabilities
Linda Toms Barker and Vida Maralani
(Through the Looking Glass, 1997) (246 pages)
$25

This milestone TLG-directed report presents findings from the first national survey of parents with disabilities. The report includes a description of parents with disabilities, barriers to parenting among adults with disabilities, transportation issues, personal assistance, adaptive parenting equipment, housing, as well as recommendations for legal and service system changes. 79% of parents with disabilities reported transportation as a problem which interfered with or prevented routine parent-child activities; 42% of parents with disabilities reported facing attitudinal barriers including discrimination (32%), pressure to have a tubal ligation (14%), and pressure to have an abortion (13%); 36% of parents with disabilities reported providers' lack of disability expertise caused problems during prenatal and birthing services; 15% of parents with disabilities reported attempts to have their children taken away from them; 8% of parents with disabilities experienced attitudinal barriers which interfered with or prevented them from adopting a child.
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All of the above books and reports can be ordered from Through the Looking Glass.
Please use TLG's Publications Order Form.