The ADD/ADHD/LD Links Page. More than thirty links to sites dealing with attention deficit disorder and other learning disabilities.The ARC of the United States: A National Organization on Mental Retardation.. The ARC's membership includes individuals with mental retardation and their family members, professionals in the field of disability and other concerned citizens. Their mission is to "work to improve the quality of life for children and adults with mental retardation and their families through education, research and advocacy." Website includes extensive information, a database of useful articles, legislative news, chat rooms, links and much more.
Band-aides and Blackboards: When Chronic Illness...or Some Other Medical Problem...Goes to School. With the input and help of many young people who are dealing with serious illness or disabilities, Nursing Professor Joan Fleitas put together this wonderful, user-friendly site that helps sensitize people to what it's like to grow up with a medical problem. The site is divided into three sections, one for kids, one for teens, and one for adults. In her introduction for adults, Joan writes, "The most important thing I've learned from my conversations with children has been that they are first of all children, with the same needs, joys, hurts and misconceptions that all children share. Their chronic illnesses or other medical conditions are part of them, but do not define them. I hope that they will learn as they grow that they can be proud of who they are, and that what's going on with their health is a part of that pride, not something to be ashamed of." This wonderful site includes art, essays, first-person stories, photographs, and poems by kids coping with illness and disabilities, as well as writings by siblings, support for going to the hospital, advice on dealing with teasing, creative relaxation imagery for kids, tips for teachers, articles by parents, and MUCH, MUCH more. A truly amazing site.
CH.A.D.D. (Children and Adults with Attention Deficit Disorder). The website for CH.A.D.D. includes conference information, fact sheets and information on linking up with a CH.A.D.D. chapter near you.
Children Coping With Grief and Dying. An annotated list of books about death, loss, illness and hope for children and their caregivers. Divided into the following categories: for very young children, for older children or children working with their caregiver, and books about life-threatening illness. A wonderful resource.
ConvoNation: The Hangout for Teens Who Are Sick or Disabled. ConvoNation is all about being young and living with an illness or disability. It's an Internet community of sick and disabled young people sharing their experiences. A great place to come for support and understanding.
Family Village: A Global Community of Disability-Related Resources. A global community that integrates information, resources, and communication opportunities for people with mental retardation and other disabilities, their families, and those that provide them with services and support. Website includes information on specific diagnoses, adaptive products and technology, adaptive recreational activities, education, communication connections, education, worship, health issues, disability-related media and literature, and more.
Family Voices. Family Voices is a national, grassroots clearinghouse for information concerning the health care of children with special health needs. Because of their belief that children with special health needs face common problems caused by fundamental inadequacies in our health care system, Family Voices advocates for the inclusion of a set of basic principles in every health care reform proposal: 1.) Every child deserves quality primary and specialty health care that is affordable and within geographic reach. 2.) Families are the core of this nation's health system, their children's most important health providers and caregivers. 3.) Quality health care should be family-centered, community-based, coordinated, and culturally competent. 4.) Health benefits and services must be flexible, guided by what children need. 5.) Strong family-professional partnerships improve decision-making, enhance outcomes and assure quality. 6.) Families practice cost-effectiveness and expect the same from health systems.
National Father's Network. The National Fathers' Network is dedicated to providing support and resources for fathers and families of children with special needs. Their beautiful, well-designed website includes Articles by Dads, moving, real life stories, poetry and insight from fathers of children with disabilities (many in Spanish); For Providers, a section designed to assist professionals in being "father friendly" in their work setting; an online photo album celebrating dads and their kids; great family, father, and disability links; and much more. One nice feature of this website is that it comes in two versions: one for newcomers to the Web and one for seasoned surfers.
Parenting in the Nineties. One parent's page full of hundreds of informative links on many topics relevant to parents. Of particular interest are her links on ADD/ADHD, other disabilities and disorders, parents' rights regarding section 504, IEP's and education for kids with disabilities.
For Parents of Preemies. This site, sponsored by the University of Wisconsin and The Center For Perinatal Care at Meriter Hospital in Madison, provides invaluable information for parents of premature infants. Topics include: anticipating the birth of a preemie, chances for survival, the likelihood of disabilities, the neonatal intensive care unit, common problems, preparing for discharge, questions after discharge, understanding your preemie, getting emotional support, later problems of preemies, child safety, and other requested topics. Excellent resources and links to information on preemies and loss/grief. Site information available in Spanish and English.
Internet Resources for Special Children. Site dedicated to communicating information about the needs of children with disabilities on a global basis. Their goals are to provide information to parents and others who work with kids with disabilities, to improve the environment for children with disabilities, to create positive changes and enhance public awareness, and to act as a central starting point for information and resources.
LD Online: The Interactive Guide to Learning Disabilities for Teachers, Parents and Children. This well-designed site is comprehensive and user-friendly. Includes in-depth information on all aspects of learning disabilities, as well as the latest research, political news, a calendar of events, an online newsletter, and advice from experts. Bulletin Boards give parents, teachers, and students a chance to talk about a variety of subjects related to learning disabilities. Includes first-person accounts from people with learning disabilities. One innovative feature, KidZone, provides kids with a virtual place where they can gain understanding of their particular disability, share their writing and artwork, and get support in advocating on their own behalf. Outstanding.
Michele Stanley's Parenting and Foster Parenting Page. A great collection of links on foster parenting, and special needs issues, including fetal alcohol syndrome, dissociative disorders and attachment disorders.
The National Center for Children and Youth with Disabilities. NICHCY is the national information and referral center that provides information on disabilities and disability-related issues for families, educators, and other professionals. Their focus is on children and youth, from birth to age 22.
National Institute on Life Planning for Persons with Disabilities . NILP is a national organization dedicated to promoting transition and life planning for people with disabilities and their families. A coalition of teachers, lawyers, planners, social workers, advocates, NILP provides families with the latest information on transition and life planning, government benefits, advocacy, guardianship, aging, housing, supported employment, and more. If you have a disability or if you have responsibility for a person with a disability, NILP can help you start planning for the future. Website includes general information, a newsletter, access to publications, an online discussion group, a life planning database to connect you with local resources, many links, and an opportunity to ask questions of experts dealing with the following subjects: general life planning issues, wills, special needs trusts, legal and structured settlements, government and community benefits, aging and disabilities, schools, transition education, and financial planning.
Our Kids: Devoted to Raising Special Kids with Special Needs. Our Kids is a Listserv "family" of parents, caregivers and others who are working with children with physical and/or mental disabilities and delays. As the website's author explains, "The Our-Kids list consist of over 800 people representing children of varying diagnosis; everything from indefinite developmental delays and sensory integration problems, to cerebral palsy, to rare genetic disorders. Over 35 countries are represented on the list now. Here we can discuss our children's accomplishments and defeats, knowing that the audience includes others who know what we are going through. We can also get some idea of how others address specific problems/concerns with feeding, learning, schools, medical resources, techniques and equipment, as well as describing the problems to friends and family or just coping. A few professionals, organizations and therapists also monitor and contribute to the list."
Parents Helping Parents. The mission of this organization is to help children with special needs receive the love, hope, respect and services they need to achieve their full potential by strengthening their families and the professionals who serve them. Includes resources, support groups, information on special education, a library, and chat groups for parents of children with disabilities. Support groups available by disability, and also in English, Japanese, Filipino, Vietnamese and Spanish.
Rare Genetic Diseases in Children: An Internet Resource Gateway. An Internet jump-station to sources of information on rare genetic diseases affecting children. Sponsored by NYU Medical Center, this site was created and is maintained by a father whose daughter has a rare genetic disorder.
Sassafrass Grove. A personal website from a homeschooling family that includes wonderful resources and links dealing with homeschooling, ADD/ADHD, nurturing peace in your family and in the world, and an online art gallery. A fun place to visit.
Songs of Love. Songs of Love is a non-profit organization dedicated to creating personalized songs for chronically and terminally ill children and young adults. These one-of-a-kind compositions are a wonderful source of joy and inspiration to the special people who receive them. This is a free service, and songs can be requested by a patient's parent, legal guardian or hospital staff. It usually takes four to six weeks to get a song written for a child, although in special circumstances Songs of Love can have the song ready as fast as needed.
SpeciaLink: The National Child Care Inclusion Network. SpeciaLink is a Canadian organization whose goal is to expand the quality and quantity of opportunities for inclusion in child care, recreation, education, and other community settings to young children with special needs and their families. SpeciaLink provides referrals to organizations, sources of help, information, and technical assistance, as well as a resource and research help line which offers personalized responses to specific questions. Their website provides access to their newsletter, FAQ, information on books and videos, and access to their speaker's bureau.
Web Resources for Parents of Children with Special Health Care Needs. Provides extensive links for parents of children with disabilities and special health care needs. Site is arranged by topics including: sibling issues, parent-to-parent support, support group directories, advocacy and public policy, assistive technology and early intervention, special education, respite care, recreation and leisure, clinical trials, diagnosis/disability specific information, and more. Includes access to newsgroups and Internet mailing lists.
