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NLS Reference Circulars

Parents' Guide to the Development of Preschool Children with Disabilities: Resources and Services

2004

Introduction

Parents of preschool children with visual or physical disabilities will find in this reference circular a wide range of information to assist them in promoting their children's development from infancy to age five.

The listing includes organizations, producers, and distributors who offer materials and services at the national level. These organizations may be contacted directly for additional information.

At the time this circular was compiled, the books included in the bibliography were in print and should be available from local bookstores or directly from the publishers. Materials listed may also be available on loan from local public libraries.

Contents

• Sources of Special-Format Materials
• National Organizations Concerned with Infants, Toddlers, and Preschoolers with Disabilities
• Federal Agencies
• Selected Bibliography, 1999-2004
• Selected Internet Resources

Sources of Special-Format Materials

Catalogs or descriptive materials may be requested from the sources indicated. Additional resources can be found at local bookstores and public libraries.

Produces and distributes Twin Vision (print/braille) books free of charge. Also sponsors a free monthly children's book club featuring braille titles selected from popular children's reading series. Maintains a free lending library of Twin Vision and braille books for kindergarten through grade twelve through the California address.

Designated and funded by an 1879 Act of Congress as the official source of educational texts (primary through secondary level) for students with visual impairments residing in the United States and its territories. Produces braille, audiocassette, and large-print books for children; pre-braille flash cards and word cards with braille and large print; reading-readiness series such as the Patterns Pre-braille Program; and tactile discrimination and visual and sensory stimulation materials and parents' handbooks. Family Life catalog of products and services free upon request.

Promotes the development of materials and methods pertaining to the growth, development, and education of infants and young children who are blind, have visual impairments, or multiple disabilities. Sells board books, large-print storybooks, parent guidebooks, selected toys, and audio cassettes.

Produces a series of multi-sensory storybooks designed specifically for pre- schoolers entitled Dots for Tots. Each kit combines a print/braille book, descriptive audiocassette of the story, and hard-plastic toys that represent characters or objects in the story. Also produces Newbery and Caldecott award-winning books and other classic and contemporary literature in braille and dual vision (print/braille). These books are part of the braille special collection program, that seeks to increase braille literacy by offering free books to children with visual impairments.

Full Vision (print/braille) books and Bible stories.

Produces a variety of tactile (embossed) materials such as alphabet, shape, and language-development flashcards; nursery rhymes with tactile illustrations; and Touch the Stars II, a book on astronomy.

Sells communication devices and adapted toys with switch operation for children with special needs. Publishes an annual catalog; free.

Produces and sells adaptive products for children with special needs, including braille blocks and pegboards. Catalog available upon request.

Sells audiocassette and compact-disc recordings of stories, folktales, and songs for preschool and early elementary school students. Price: $9.95- $39.95.

Offers large-print unabridged reproductions of award-winning and classic juvenile and adult literature in 18- or 20-point type. Also produces textbooks and educational support materials, and will custom-produce material on request. Maintains an online catalog of more than 15,000 titles.

Sells audio and video recordings of award-winning children's books, read- along picture books in English and Spanish, read-along books for beginning readers, and materials on compact disc, video, and DVD. Price: $16.95- $54.95.

Produces and sells braille editions of books by A.A. Milne, Beatrix Potter, and other popular children's authors.

Promotes literacy for individuals who are blind and deaf-blind by printing and selling braille and print/braille books and transcribing printed materials. Offers a children's book club featuring a new book every month in print/braille format for preschool to grade 3. Promotes a national children's braille literacy program, "Read Books! Because Braille Matters," to families with blind and visually impaired children, from birth to age seven by sending age-appropriate print/braille books in English or Spanish. Also produces a print/braille children's calendar and a braille primer for parents, Just Enough to Know Better.

Principal Publication: Toys "R" Us Toy Guide for Differently-Abled Kids

Selects and analyses more than 5,000 traditional and adapted toys for use by children with disabilities and makes them available for borrowing through their toy-lending libraries throughout the United States.

Provides a free national library program of print/braille, braille, and cassette recorded nursery rhymes, stories, and other books to eligible readers of all ages through a network of cooperating state and local libraries.

Sells print/braille, braille, and picture books for infants and young children (including the Touch and Feel series). Yearly catalog available upon request.

Operates a free lending library of print/braille books of classic literature and popular children's authors.

Has English-and Spanish-language stories in book-cassette or book- compact disc combinations for preschool and elementary school children. Produces a foreign-language video collection in French, Japanese, and Mandarin Chinese for that age group also. Free curriculum guides included with each video purchased. Price: $12.95-$89.95.

National Organizations Concerned with Infants, Toddlers, and Preschoolers with Disabilities

Principal publication: Journal of Visual Impairment and Blindness, monthly

Serves as a national clearinghouse for information on blindness and related topics. Promotes the development of educational, rehabilitation, and social welfare services for blind and visually impaired children and adults.

Develops and promotes a wide variety of initiatives to improve literacy among people who are blind or who have low vision. Provides up-to-date resources and workshops for professionals who work with blind and visually impaired children, their parents, and other family members. One resource in particular, Connecting the Dots, includes material and factsheets on promoting braille literacy for children with visual impairments.

Principal publication: Kids Get Arthritis Too, 6 issues

A council of the Arthritis Foundation, AJAO serves the special needs of children, teens, and young adults with childhood rheumatic diseases and their families. Provides education and support programs through local offices, referrals to pediatric rheumatologists, produces free brochures and funds research, and sponsors a summer camp.

Provides services to families through the project Babies Count: National Registry for Children with Visual Impairment from Birth to Three Years. Sponsors a series of workshops and training classes for parents and educators that focus on curriculum areas and topics vital to the education of blind and visually impaired children. Produces educational material, including activity sheets, books, and games for parents and preschool through high school-age children. Provides Family Life, a catalog of products and services for families with visually impaired children of all ages, free upon request.

Principal publication: Beach Center Newsletter, quarterly

Sponsors a parent-support program that matches veteran parents of children with special needs with new parents. Offers online discussion groups for parents and professionals. Publishes research reports addressing family well-being across the life-span.

Principal publication: Birth Defect News, monthly, via e-mail

Provides parents and expectant parents with information about birth defects and support services. Has a parent-matching program to link families who have children with similar birth defects. Sponsors the National Birth Defect Registry, a research project to study associations between birth defects and exposures to radiation, medication, alcohol, smoking, and toxins.

Provides education, therapy, and support to parents and families of children with visual impairments and with multiple handicaps including blindness. Works with children from infancy to age five in a classroom setting and prepares them for mainstreaming in elementary grades. Publishes educational books and videos for parents and professionals.

Principal publications:

• Exceptional children, quarterly
• Teaching exceptional children, bimonthly

Improves educational outcomes for individuals with disabilities. Advocates for governmental policies, sets professional standards, and provides professional development training. Offers print and nonprint publications. The Yes I Can! Foundation for Exceptional Children designs and implements programs for children and youths with disabilities.

Principal publication: Commitment, 2-3/year

Supports medical research and legislative action to achieve its mission of finding a cure or control for cystic fibrosis and to improve the quality of life for people with the disease. Serves as an information resource.

Federally funded projects that provide assistance and training opportunities to families, teachers, other professionals, and agencies involved with deaf- blind children (birth to age twenty-two). Most states have a deaf-blind project. Types of services vary from state to state but include identification of children who are deaf-blind, workshops and other types of training events, consultations, online courses, newsletters, opportunities for parent- to-parent contact, and family retreats.

Principal publication: DREDF News, periodic

Acts as a national law and policy center dedicated to protecting and advancing the civil rights of people with disabilities through legislation, litigation, advocacy, and technical assistance. Educates and trains attorneys, advocates, persons with disabilities, and parents of children with disabilities.

Principal publication: Newsletter, monthly, via e-mail

Assists children and adults with disabilities and their families through a nationwide network of service sites. Provides family focused services that are tailored to meet the specific needs of the community it serves and may include child care, medical rehabilitation, and camping.

Principal publications:

• EpilepsyUSA, bimonthly, in print and online
• eNewsletter, monthly, via e-mail

Serves children and adults with seizures through research, education, service, and advocacy. Maintains the National Epilepsy Library and online eCommunities Interest Groups.

Principal publication: Voices, bimonthly

Serves as a grassroots clearinghouse for information and education concerning the healthcare of children with special health needs.

Offers distance-education courses for parents of blind or deaf-blind children through its family education program. Provides teaching techniques and guidelines for parents to help their children reach developmental milestones. Other courses include toy selection and guidance, orientation and mobility, and daily living skills.

Principal publication: Countdown for Kids, quarterly

Advocates and supports research to find a cure for juvenile diabetes and its complications. Sells publications.

Principal publication: EnVision, 2/year

Provides training for parents of children with visual impairments and the professionals working with them. Works with schools, day care centers, and health and human services organizations to facilitate early identification of visual problems in children and to design strategies that enhance development. Conducts empirical studies in fields of child development, family systems, and education as they relate to vision loss.

Principal publication: Mama magazine, annual

Maintains the Pregnancy and Newborn Health Education Center for confidential answers to questions about pregnancy, newborn screening, and related topics. Offers free brochures.

Principal publications:

• MDA/ALS Newsletter, 10/year, in print and online
• Quest, bimonthly, in print and online

Offers support groups for individuals with neuromuscular diseases and their families and MDA summer camps. Produces publications and sponsors research into the causes of and treatments for neuromuscular diseases.

Principal publication: Awareness, quarterly

A membership organization that provides a national support and information network and a referral service for parents and families of children with visual impairment. Advocates for the educational needs and welfare of children who are blind or visually impaired. Initiates outreach programs.

Formerly National Information Center for Children and Youth with Disabilities (NICHCY). Serves as a national information center on disabilities and disability related issues, with a special focus on children and youth (birth to age twenty-two). Also serves as a central source of information on special education laws such as the Individuals with Disabilities Education Act (IDEA) and the No Child Left Behind Act. Produces state resource sheets, disability fact sheets, pamphlets on IDEA, and Individualized Education Plans (IEP). Publications in English and Spanish in print and online.

Principal publication: NAFT Newsletter, irregular

A federally funded parent training and information center that provides workshops and information to families about the Individuals with Disabilities Education Act (IDEA) and other relevant special education laws and regulations. Assists families in working with schools to develop educational programs for children with disabilities.

Principal publications:

• Braille Monitor, monthly
• Future Reflections, quarterly

Serves as a forum where parents can share experiences and offers guidance in rearing children with visual impairments. Promotes opportunity and equality for blind children at home and in society.

Principal publication: The Lantern, 2/year

Residential and day school serves an international student body through its preschool program. Provides public awareness of blind and deaf-blind persons. Offers for a fee services such as consultation and counseling for parents and families, and diagnostic evaluations. Sponsors the Hilton/Perkins national program, a federally funded grant to improve services to deaf-blind children, emphasizing infant development, teacher training, and programs to help parents become organized. Through the Howe Press sells braille reading, writing, and educational products.

Principal publication: Insights, bimonthly

Seeks to find a cure and enhance the lives of individuals living with spina bifida.

Principal publications:

• Research and Practice for Persons with Severe Disabilities, quarterly, in print and online
• TASH Connections, 10/year, in print and online

Formerly the Association for Persons with Severe Handicaps, it promotes the full inclusion and participation of persons with disabilities in all aspects of life and supports legislation and public policy to achieve this goal. Offers support services to families of infants, children and youths with autism, cerebral palsy, mental retardation, or other physical disabilities that make full integration a challenge.

Provides early childhood outreach programs and educational assessments of children with visual impairments and multiple disabilities statewide. Offers advocacy information, training and support to parents, family counseling, psychological testing, consultation, and referrals. Provides information on state and federal laws and programs, such as, supplemental security income (SSI). Some material available in Spanish. Sponsors the Texas deaf-blind project and publishes instructional materials for use by parents and professionals.

Provides information on cerebral palsy and advocates for the rights of people with disabilities. Sponsors research related to the prevention of cerebral palsy. Offers a range of direct services through UCP affiliates.

Federal Agencies

Works to identify the causes of birth defects and developmental disabilities, to help children develop and reach their full potential, and to promote health and well-being among people of all ages with disabilities. Can search health topics and publications online.

Provides a wide array of supports in special education, vocational rehabilitation and research to parents, individuals, school districts and states. Funds programs that serve infants, toddlers, children, and adults with disabilities. Offers information and technical assistance to parents of infants, toddlers, and children with disabilities, and to professionals who serve them.

Selected Bibliography, 1999-2004

This section cites literature from 1999-2004 concerning family relations, early childhood education, child development, and programs and services. It also includes selected classic titles. Many newsletters and journals of interest to parents are published by organizations that deal with a specific disability. These titles are listed in the National Organizations section. Subscriptions to the magazines listed in this section are available from the source given with each title.

Batshaw, Mark L., ed. Children with disabilities. 5th ed. Baltimore: Brookes Publishing Company, 2002. 870p. $69.95.

Batshaw, Mark L., ed. When your child has a disability: the complete sourcebook of daily and medical care. 2d rev. ed. Baltimore: Brookes Publishing Company, 2001. 467p. $22.95.

Brennan, Mary. Show me how: a manual for parents of preschool visually impaired and blind children. New York: AFB Press, 1982. 56p. $19.95. (11 Penn Plaza, Suite 300, NY 10001).

Bruder, Mary Beth. The individual family service plan (ISEP). Arlington, VA: Eric EC digest, #E605, 2000. Available online at ericec.org/digests/e605.html.

Castellano, Carol. Because books matter: reading braille books with young blind children. Boston: National Braille Press, nd. Free. [large print booklet]. Also available in Spanish. (88 St. Stephen Street, MA 02115).

Castellano, Carol, and Dawn Kosman. The bridge to braille: reading and school success for the young blind child. Baltimore: National Organization of Parents of Blind Children, 1997. 191p. $12.95. Distributed by National Braille Press.

Connecting the dots: a parent's resource for promoting early braille literacy. Atlanta: American Foundation for the Blind, National Literacy Program, 2002. [pamphlets/factsheets]. Free. (100 Peachtree Street, Suite 620, GA 30303).

Curran, Eileen P. Just enough to know better: a braille primer for sighted parents. 2d ed. Boston: National Braille Press, 1988. $15. (88 St. Stephen Street, MA 02115).

Directory for exceptional children: a listing of educational and training facilities. Boston: Porter Sargent Publishers, Inc. Biennial. $45. (11 Beacon Street, Suite 1400, MA 02108)

Early years: a series. London: Royal National Institute for the Blind, 1996. $29.95. [set of 4 booklets]. Distributed by AFB Press (11 Penn Plaza, Suite 300, New York, NY 10001).

"Early years - special issue." Future reflections, v. 23, Aug. 2004: 1-114. (entire issue).

Educating blind and visually impaired students: policy guidance from OSERS. Retrieved August 27, 2004. www.tsbvi.edu/agenda/osers-policy.htm

EP/exceptional parent magazine. Monthly. $39.95/year; $54.95/year for Canada and $57.95/year for other foreign countries. (P.O. Box 2078, Marion, OH 43306).

Ferrell, Kay Alicyn. Parenting preschoolers: suggestions for raising young blind and visually impaired children. New York: AFB Press, 1984. 28p. $50 for pack of 25. [booklet].

First steps: a handbook for teaching young children who are visually impaired. Los Angeles: Blind Childrens Center, nd. 203p. $35. (4120 Marathon Street, CA 90029).

Gold, Deborah, ed. Finding a new path: guidance for parents of young children who are visually impaired or blind. Toronto: Canadian National Institute for the Blind, 2002. 220p. $35. (1929 Bayview Avenue M4G 3E8 Canada). Distributed by American Foundation for the Blind.

Guide to resources produced by National Institute on Disability and Rehabilitation Research (NIDRR) Grantees: infants, children, and youth with disabilities. Austin: National Center for the Dissemination of Disability Research, 2004. 133p. Free. (Southwest Educational Development laboratory, 211 East Seventh Street, Suite 400, TX 78701).

Guide to toys for children who are blind or visually impaired. New York: Toy Industry Foundation, Inc., and American Foundation for the Blind, 2002. 26p. Free. (11 Penn Plaza, Suite 300, NY 10001).

Harrell, Lois. Touch the baby: blind and visually impaired children as patients: helping them respond to care. New York: AFB Press, 1984. 13p. $25 for a packet of 25. [booklet].

Hatton, Deborah D., R.A. McWilliam, and P.J. Winton. Infants and toddlers with visual impairments: suggestions for early interventionists. ERIC EC digest #E636, 2002. Available online at http://ericec.org/digests/e636.html.

Learning to play: common concerns for the visually impaired preschool child. Los Angeles: Blind Childrens Center, nd. 12p. $10. (4120 Marathon Street, CA 90029).

Library of Congress. National Library Service for the Blind and Physically Handicapped. Reference Section. Blindness and visual impairments: information and advocacy organizations. Washington: 2001. 56p. Free. Also available online at www.loc.gov/nls/reference/circulars/blindorg2001.html.

Library of Congress. National Library Service for the Blind and Physically Handicapped. Reference Section. Deaf-blindness: national resources and organizations. Washington: 2004. 21p. Free. Also available online at www.loc.gov/nls/reference/circulars/deafblind.html.

Library of Congress. National Library Service for the Blind and Physically Handicapped. Reference Section. Physical disabilities: information and advocacy organizations. Compiled by Carol Strauss. Washington: 2003. 48p. Free. Also available online at www.loc.gov/nls/reference/circulars/physical.html.

Lutkenhoff, Marlene, ed. Children with spina bifida: a parents' guide. Bethesda: Woodbine House, 1999. 405p. $16.95. (6510 Bells Mill Road, MD 20817).

Meyers, Laura. Dancing cheek to cheek: nurturing beginning social, play, and language interactions. Los Angeles: Blind Childrens Center, 1994. 33p. $10. [booklet]. (4120 Marathon Street, CA 90029).

Move with me: a parents' guide to movement development for visually impaired babies. Los Angeles: Blind Childrens Center, nd. 12p. $10. [booklet]. Also available in Spanish. (4120 Marathon Street, CA 90029).

Parenting a child with special needs. NICHCY news digest #20. 3rd ed. Washington: National Dissemination Center for Children with Disabilities, 2003. Available online at www.nichcy.org/pubs/newsdig/nd20txt.htm

Pogrund, Rona L., and Diane L. Fazzi, eds. Early focus: working with young children who are blind or visually impaired and their families. 2d ed. New York: AFB Press, 2002. 376p. $49.95. (11 Penn Plaza, Suite 300, NY 10001).

Powers, Michael D., ed. Children with autism: a parents' guide. 2d ed. Bethesda: Woodbine House, 2000. 427p. $17.95. (6510 Bells Mill Road, MD 20817).

Questions often asked by parents about special education services. 4th ed. Washington: National Dissemination Center for Children with Disabilities, 1999. 11p. Available online at www.nichcy.org/pubs/ideapubs/lg1txt.htm.

Schwartz, Sue. The new language of toys: teaching communication skills to children with special needs. 3rd ed. Bethesda, MD: Woodbine House, 2004. 249p. $18.95.

Selecting a program: a guide for parents of infants and preschoolers with visual impairments. Los Angeles: Blind Childrens Center, nd. 28p. $10. [booklet]. Also available in Spanish.

Simmons, Susan S., and Sharon O'Mara Maida. Reaching, crawling, walking let's get moving: orientation and mobility for preschool children. Los Angeles: Blind Childrens Center, 1992. 24p. $10.

Special Needs Advocate for Parents (Snap) report: information for families with special needs children of all ages and disabilities. Quarterly. (11835 West Olympic Blvd, Suite 465, Los Angeles, CA 90064). Available at www.snapinfo.org/News.

Standing on my own two feet. Los Angeles: Blind Childrens Center, nd. 36p. $10. (4120 Marathon Street, CA 90029).

Swenson, Anna M., and Frances Mary D'Andrea. The braille trail: parent/teacher guide. New York: AFB Press, 2002. $24.95. [Includes one activity book and a set of 20 braille sheets]. (11 Penn Plaza, Suite 300, NY 10001).

Takeshita, Bill. Developing your child's vision: a guide for parents of infants and young children with vision impairment. Los Angeles: Center for the Partially Sighted. 11p. [booklet]. Free. (12301 Wilshire, Suite 600, CA 90025). Also available online at www.low- vison.org.

What to know and where to go: parents' guide to No Child Left Behind-a new era in education. Washington: U.S. Department of Education, 2002. 32p. [booklet]. Free. (ED Pubs, Education Publication Center, U. S. Dept. of Education, P.O. Box 1398, Jessup, MD 20794).

Wright, Peter, and Pamela D. Wright. Wrightslaw: special education law. Hartfield, VA: Harbor House Law Press, 2004. 1st ed. 369p. $29.95. (P.O. Box 480, 23071).

Selected Internet Resources

Children with Diabetes

www.childrenwithdiabetes.com/index_cwd.htm

Offers an online community for children, families, and adults with diabetes.

DisabilityInfo.gov

www.disability.gov

Gateway to the federal government's disability related information and resources on topics that include education, transportation, health, and technology.

Early Childhood and Parenting (ECAP) Collaborative

http://ecap.crc.uiuc.edu

Located at the University of Illinois at Urbana-Champaign Children's Research Center, it funds a dozen projects on the education, care, and parenting of young children. Hosts online interactive chats and sponsors and manages electronic distribution lists on topics relevant to early childhood education. Includes an electronic distribution list entitled "Mother's perceptions of interactions with babies with and without disabilities in different cultures."

EP/Exceptional Parent magazine

www.eparent.com

Has an annual resource guide of national information and advocacy resources and support for the special needs community.

Family Center on Technology and Disability

www.fctd.info

Provides information and services dealing with assistive technology (AT) to organizations and programs that work with families of children and youth with disabilities. Has an extensive database of educational and AT resources, monthly newsletters, tutorials, and online discussions with AT experts.

Internet Resources for Special Children

www.irsc.org

Has links to topics such as adaptive equipment, blind and visually impaired, diseases, employment, laws, and recreation.

MedlinePlus

http://medlineplus.gov

A service of the U.S. National Library of Medicine and the National Institutes of Health (NIH), offers latest news, clinical trials, diagnosis, research, and treatment on various health topics. Includes information on law and policy and organizations dealing with a specific condition.

MUMS: National Parent-to-Parent Network

www.netnet.net/mums

A national parent-to-parent support network for parents or care providers of a child with any disability, rare disorder, chromosomal abnormality, or health condition. Maintains a database of more than eighteen thousand families.

National Early Childhood Technical Assistance Center

www.nectac.org

A program of the University of North Carolina at Chapel Hill, and funded by the U.S. Department of Education, Office of Special Education. Provides information and resources on the early childhood provisions of the Individuals with Disabilities Education Act (IDEA).

National Family Association for Deaf-Blind

www.nfadb.org

A network of families focusing on issues related to deaf-blindness.

National Organization for Rare Disorders

www.rarediseases.org

Acts as a clearinghouse for information about rare disorders. Educates the general public and medical professionals about the existence, diagnosis, and treatment of rare disorders.

Office of Rare Diseases, National Institutes of Health

http://rarediseases.info.nih.gov

Established by the National Human Genome Research Institute (NHGRI) and Office of Rare Diseases (ORD), the Genetic and Rare Diseases. The information center answers questions in English or Spanish from parents, patients, and healthcare professionals about genetic and rare diseases.

Parent Advocacy Coalition for Educational Rights (PACER) Center, Inc.

www.pacer.org

Information on special education, No Child Left Behind act, insurance, technology, and other issues affecting children with disabilities or special education. Produces and distributes newsletters, books, and videos. Organizes workshops for parents and professionals.

Social Security Online

www.ssa.gov

Information includes benefits, disability programs, forms and publications, and hearings. Offers print or online version of SSI child disability starter kit in English or Spanish.

Tourette's Syndrome "Plus"

www.tourettesyndrome.net

Has links to information on Tourette's Syndrome and other conditions.

Wrightslaw

www.wrightslaw.com

Up-to-date information about special education law and advocacy for children with disabilities.

Compiled by
Ruth Nussbaum
and
Carol Strauss
September 2004

Additional copies of this circular or any of the reference bibliographies or circulars listed below are available free on request from the Reference Section. They are also available on the NLS web site at www.loc.gov/nls/reference/index.html.

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Posted on 2006-05-30