Parenting with a Disability Volume 11, Issue 2 Fall 2005, A publication of the National Resource Center for Parents with Disabilities

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Volume 11, Issue 2 Fall 2005

Parenting with a Disability

A publication of the National Resource Center for Parents with Disabilities
Volume 11, Issue 2 Fall 2005

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Through the Looking Glass: Taking a Closer Look
Paul Preston, Ph.D. Through the Looking Glass is now in its 23rd year of operations. We’ve come a long way since our early days back in the ‘80’s – emerging from Berkeley’s Independent Living Movement to pioneer nationally recognized services, training and research concerning families with disabilities. Over the years, we’ve expanded from providing direct services to local families in the Bay Area to becoming the first national center to focus on parents with disabilities in 1993. Our National Center currently provides information, consultation, materials and training regarding the 8.4 -- Full Text

TLG’s Intervention Model and New Training Module concerning Parents with Intellectual Disabilities
Sherrie Hansen, Ph.D., TLG Clinical Director & Megan Kirshbaum, Ph.D., Executive Director TLG's National Resource Center for Parents with Disabilities receives numerous requests for materials and information about more effective services for parents with intellectual disabilities. (Note: The term "intellectual disability" is used in place of a widely used but inexact term "developmental disability.") Many service providers report particular frustration about conveying information to parents with intellectual disabilities. "Being unable to benefit from services" is often one of the grounds -- Full Text

FYI

Parents with M.S.
An excellent article for parents with MS recently appeared in the August 2005 issue of InsideMS, the magazine for members of the National M.S. Society. You can read this article online at http://www.nationalmssociety.org/InsideMS.asp or you can request a copy from TLG. If you’d like more information about the National MS Society or find out about local chapters in your area, please call: 800-FIGHT MS. -- Full Text

Returning Soldiers from Iraq
The Department of Defense has asked TLG to conduct two workshops on parents with disabilities at their Birth to Three Summit in Washington, D.C. November 3rd. This conference will include more than 500 diverse professionals involved with military families within the Department of Defense. The invited workshops are viewed as an initial opportunity for outreach. For several months leaders in this community have been exploring ways Through the Looking Glass’ expertise could be more available to military families. Through the Looking Glass is acknowledged as a unique resource that can help soldi -- Full Text

The American Red Cross
The American Red Cross chose Through the Looking Glass as one of six national disability organizations with which it will collaborate in order "to enhance the involvement and participation of persons with disabilities in American Red Cross programs and services." -- Full Text

Ed Roberts Campus
Through the Looking Glass is one of eight partners in the Ed Roberts Campus (ERC). The Ed Roberts Campus is a nonprofit corporation formed by eight organizations that share a common history in the Independent Living Movement of people with disabilities. These eight agencies have joined together to plan and develop a universally designed, transit-oriented campus located at the Ashby BART Station in Berkeley. The ERC honors the life and work of Edward V. Roberts, an early leader in the independent living movement. Ed wore many hats during his lifetime, one of them being Chair of TLG’s Board of -- Full Text

DPPi
TLG would like to congratulate our sister organization in the U.K – Disability, Pregnancy & Parenthood international – on the publication of their 50th issue of their journal. To learn more about them, please see their website: www.dppi.org.uk/ -- Full Text

Online Shopping Cart
A number of new publications concerning parents with disabilities are mentioned in this newsletter, and TLG is in the process of setting up a shopping-cart format for ordering our publications online. As part of this upgrade, many previous TLG publications will be downloadable for free from our website. [In the meantime, our publications are listed at http://www.lookingglass.org/publications ] -- Full Text

New Training and Materials Available for Occupational Therapists
Christi Tuleja, M.S., OTR, Judi Rogers, OTR/L, Megan Kirshbaum, Ph.D., and Kelley Abrams, Ph.D. Through the Looking Glass recently completed a three-year field-initiated project to develop an evaluation assessment tool and training for occupational therapy students and clinicians to inform their work with parents with physical disabilities. This project was funded by NIDRR, U.S. Department of Education (Grant #H133GO10054), and was based on 14 years of TLG's clinical experiences and a series of previously funded NIDRR grants regarding adaptive babycare equipment. Assessment Tool Descri -- Full Text

Family, Disability and the Law at the National Resource Center
Ella Callow, J.D. As a family law attorney on staff with the NRC, my job is to try and make the legal world accessible to parents with disabilities and prevent the unnecessary removal of their children to the state‚s custody, or the custody of the non-disabled parent. I believe that removal of a child from a safe and loving home, on the basis of a parent's disability, is an inexcusable traumatization of children and a violation of parent's rights. What I have found is that whether the caller's disability is physical, sensory, mental or cognitive, unnecessary removal occurs too often. Alth -- Full Text

TLG Provides Bilingual Information & Referral Services
Meche Aguire-Sullivan TLG has provided Information and Referral (I&R) services for many years. On a daily basis, our team has supplied resources to address various issues: adaptive parenting equipment, advocacy for parents with disabilities, custody issues, pregnancy and birthing… You name it! We have provided information and referrals to parents with all disabilities, as well as to deaf parents, blind parents and parents with medical issues. Our callers have also included professionals such as occupational therapists, attorneys and social workers. Now, our I&R department can count Spanis -- Full Text

A Través del Espejo Proporciona Servicios Bilingües de Información y Canalización
A Través del Espejo (TLG por sus siglas en inglés) ha proporcionado servicios de información y canalización durante muchos años. Día a día, nuestro equipo ha puesto a disposición de sus clientes los recursos necesarios para resolver diversos problemas de los padres y las madres discapacitados: como conseguir equipo especial para facilitar los cuidados de sus hijos/as, servicios de gestión, y orientación sobre cuestiones del embarazo, el parto, y la custodia de los hijos. ¡Manejamos una gran variedad de temas! Hemos facilitado información y canalizaciones para madres y padres con toda clase d -- Full Text

Blind and Partially-Sighted Parents
Debbie Bacon Hello, my name is Debbie Bacon and I have been working at TLG as the Project Manager for the National Resource Center for Parents with Disabilities for the past year. I have been legally blind since birth, and I am a parent with a disability. I have three children: Tim 24, Chris 24, and Kim 19. Yes there are two "24's"! I had twins the first time just to make things more interesting. My three children have been raised to understand that having a parent with a disability can offer up many challenges throughout life. They have also learned by living with me that there is al -- Full Text

Motherhood and Disability: Children and Choices
by Ora Prilleltensky. Palgrave MacMillan (2004). 256 pages. --Reviewed by Megan Kirshbaum This is a well-written and sophisticated book with quite a broad lens. It provides an excellent context for a discussion of motherhood by women with physical disabilities. Feminist and disability scholars as well as specialists in reproductive health will appreciate the extensive material on the sociopolitical construct of disability, reproductive rights and sexuality of women with disability, growing up as a girl with a disability, and women with disabilities' choices whether or not to have childr -- Full Text

The Disabled Woman's Guide to Pregnancy and Birth
Judith Rogers, OTR. Demos Medical Publishing (2005). 532 pages. Judi Rogers, TLG's Pregnancy and Birthing Specialist since 1989 and recipient of the of the 2002 Robert Wood Johnson Community Health Leadership award, has just revised and expanded her previous book. (Read about Judi's award) The Disabled Woman's Guide to Pregnancy and Birth supports the right of all women to choose motherhood, and will be useful for any woman with a physical disability who desires to have a child. This comprehensive guide is based on the experiences of ninety women with disabilities who chose to have c -- Full Text

Long Time No See, by Beth Finke
University of Illinois Press (2003). 216 pages. - Reviewed by Debbie Bacon Beth Finke provides a glimpse into different chapters of her life in Long Time No See. Ms. Finke demonstrates that struggling is a part of life, and the way you deal with life's twist and turns is what determines their ultimate outcomes. There are many struggles in this book -- from losing your sight to dealing with diabetes to raising a child with multiple disabilities. But the largest struggle is from within Finke herself, and the text reveals an evolution in Finke's life. The most striking point made in this -- Full Text

Mother Father Deaf: Living between Sound and Silence
Mother Father Deaf: Living between Sound and Silence (Harvard Press, 1994) is Paul Preston’s national study of adult hearing children of deaf parents, and has been acknowledged as a landmark work on the intersection of disability, culture and family. Dr. Preston is the Director of TLG’s National Resource Center for Parents with Disabilities. In conjunction with the Japanese publication of Mother Father Deaf (Gendai Shokan, 2003), Dr. Preston was invited to a month-long series of workshops and lectures throughout Japan. This book and book chapters have also been translated into Spanish, Fren -- Full Text

Systems Development Work in Kansas
Megan Kirshbaum, Ph.D. Regional and statewide systems development is one of the activities of TLG’s National Resource Center. This year the systems development has included working with the state leadership in Kansas’ independent living movement—that is, the Kansas SILC (Statewide Independent Living Council)—to support improved resources for parents with disabilities throughout their state. First Shannon Jones, the Executive Director of SILCK, had Ella Callow, the NRC’s Family Law Advisor, review documents relevant to proposed Kansas policy and legislation governing treatment of families t -- Full Text

TLG's National Parent Network
Are you a parent with a disability? Do you know a parent with a disability? If you answered yes to either of these questions, you may be interested to know that Through the Looking Glass has a National Parent to Parent Network. The National Parent-to-Parent Network connects parents with disabilities who want to share their experiences and learn from each other. Parents with all types of disabilities including physical disabilities, blindness and visual impairments, hidden disabilities, medical conditions as well as deaf parents are all participating in this growing Network. Some of th -- Full Text

Dear Friends,
We are honored to receive your support for programs benefiting families with disabilities. Your gifts (in any amount) help us reach our fundraising goals and touch the lives of thousands of babies, children, parents and grandparents with disabilities each year. -- Full Text

Parent Network Poster Free for Public Display
This poster advertises our national Parent-to-Parent Network for parents with disabilities. This poster is available for free from TLG in two sizes (small 8 1/2 x 11”, and large 17” x 22”.) If you have a public space to display one of these posters, please contact us and we’ll mail you one – while our supply lasts. [Download a letter-sized version in PDF format] -- Full Text

2005 College Scholarships for Students of Parents with Disabilities
Paul Preston, Ph.D. The first time I realized that he was different from other dads was when I was around seven years old and my dad took our family swimming at the city pool for the first time. He hopped out of the dressing room, and I saw every eye at that pool examine him because he had scarred, burned skin and his left leg was a thin stump. He simply ignored the stares and dived into the water and swam all over the pool. I felt I had to protect him, so I jumped in after him, and swam right along side of him. My brother and my mom joined us, and at the end of the day, I realized we h -- Full Text