Future Reflections Special Issue: Blind Children with Additional Disabilities
Telephone Support for Parents of Blind Children on the Autism Spectrum
Contact: Lisa L. Galdi, PhD
The Jewish Guild for the Blind is starting a free support service for families of children with autism spectrum disorders and visual impairments. This will be a national group conducted through weekly teleconference calls. The group will give participants an opportunity to connect with other parents or guardians on a variety of topics. Issues around children's personal and educational development will be addressed, as well as coping strategies for families.
Mothers United for Moral Support (MUMS)
National Parent-to-Parent Network
150 Custer Ct., Green Bay, WI 54301
MUMS is a national parent-to-parent network whose mission is to help parents who have a child with any disorder, medical condition, mental or emotional disorder, or rare diagnosis make connections with other parents whose children have the same or similar condition. Through a database of over 21,200 families from fifty-six countries, covering over 3,500 disorders, very rare syndromes can be matched. Parents can offer mutual support and exchange valuable information on medical resources and coping strategies.
NORD Rare Disease Support Community
National Organization for Rare Disorders (NORD)
55 Kenosha Ave., P.O. Box 1968, Danbury, CT 06813
NORD is a federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases. The NORD Rare Disease Support Community connects patients, family, friends, and caregivers for support and encouragement. The Website includes links to hundreds of discussion groups related to specific disorders.
National Family Association for Deaf-Blind
141 Middle Neck Rd., Sands Point, NY 11050
NFADB is a national network of families focusing on issues around deafblindness. It encourages networking among families, and trains and supports families as they advocate for their needs.
American Association of the Deaf-Blind (AADB)
8630 Fenton St., Suite 121, Silver Spring, MD 20910
(301) 495-4403 voice
(301) 495-4402 TTY
(301) 563-9107 Video Phone
AADB is a national consumer organization of deafblind people and their supporters. It maintains an information clearinghouse; sponsors national conferences; publishes a monthly newsletter; and provides advocacy, training, workshops, and involvement with legislators.
Apert Syndrome Forum
Developed by the parents of a child with Apert syndrome, this Website offers networking opportunities and provides links to many sites that focus on craniofacial disorders.
Bandaides and Blackboards
Created by Joan Fleitas, associate professor of nursing at Lehman College, this unique Website is designed for kids and teens who are growing up with chronic medical problems. As Fleitas explains, "These kids have become experts at coping with problems that most of you have never heard of. They'd like you to know how they do it." Sections include kids' personal stories, poetry, and artwork; hints about coping with the hospital; suggestions on how to deal with teasing; essays by siblings; and much more.
National Center for Bullying Prevention
"The end of bullying begins with me," is the motto of the National Center for Bullying Prevention. Through videos, books, online games, and personal stories, the center's Website empowers kids and teens to stand up for themselves and others. An assortment of ideas will help parents and teachers combat bullying at school and in the community.
Dictionary for Parents of Children with Disabilities
Parents of a child with disabilities may find themselves staggering beneath a landslide of new words, phrases, and acronyms. Help is at hand in this online dictionary, created by the South Dakota Department of Special Education and Cultural Affairs, Office of Special Education. Available as a downloadable PDF file, the dictionary provides simple definitions for terms in the fields of testing/evaluation, early intervention, special education, medicine, guardianship, insurance, and more.
Air Charity Network (ACN)
Dedicated to "giving hope wings," ACN helps obtain flights for persons who require specialized medical treatment at a geographically distant location. Mission coordinators work diligently to find volunteer pilots or other transportation resources for qualifying patients and family members.
Next Generation Perkins Brailler
Contact: Marilyn Rea Beyer
The well-loved classic Perkins Brailler has been re-imagined, retaining all the attributes that made it the most widely used Brailler in the world. The Next Generation Perkins Brailler is more portable, more comfortable to use, and quieter than the classic model. New features include an erase button and front panel margin guides. The keys operate with light pressure, providing ease of use for children with limited hand strength.
Children's Braille Book Club
National Braille Press
88 St. Stephen St., Boston, MA 02115
(800) 548-7323 or (617) 266-6160
Join the only children's Braille book club in the country that offers a new print/Braille picture book each month. Geared for children in preschool through third grade, the club offers print books enhanced with Braille text on clear plastic sheets and sold at the same price as the standard print version. Recent titles include the classics Madeline, which contains a tactile drawing of Madeline by artist Ann Cunningham; Mike Mulligan and His Steam Shovel, which comes with an audio CD; and Chicka Chicka Boom Boom (you can buy a set of tactile print letters to accompany this alphabet book). Order a free catalog from National Braille Press by phone or email.