Found an online resource you want to share with other parents? Enter the link below!
Most Recent Support Resources
- Catherine presented at the Stanford MedX conference in 2013 about her place as a mother who fights for her children, manages their health care and finds ways to encourage communication between professionals and patients. Her presentation is a must-read for mothers of special needs children everywhere!
- Dave deBronkart's latest book, Let Patients Help, is full of great advice and wisdom for anyone who likes to stay alive and avoid issues in the hospital. It's a must read for patients, caregivers, doctors, nurses, healthcare providers, hospital leaders, etc.
- The Oregon Deaf-Blind Project has created a family guide for parents of children diagnosed with deaf-blindness. Their goal is to help you make sense of this journey by offering hope, helping you understand your child's needs, assisting you with next steps and offering resources along the way.
- NetBuddy is a UK site that provides support to parents and caregivers of children and adults with special needs. The site is designed to make it easy to share and find "tips" - all of those ideas and tactics that many of us have learned the hard way and now would like to share with others.
- Thomas is visually impaired and Jessica writes about the trials and successes of raising a little boy who is blind. She focuses quite a bit on the positive and explains how to get the services and resources all families need. She also writes a lot about feeding issues, beginning braille skills, O&M (Tom is so cute with his cane!) and iPad apps.
- Created to help families and parents of children with Albinism and its related visual impairments obtain and afford all of the vast items, devices and treatments their eyes need.
- This is a collection of free downloadable resources for families with children who are deafblind. Topics include early intervention services, the evaluation process for children who are deafblind, checklists for Individualized Education Program (IEP) meetings, appropriate public education options, the transition to adult life and more.
- "Amber & Max" is a candid sharing of the good, the bad, and the ugly experiences we have in living through Septo-Optic Dysplasia. It began as an effort to share information with family living out-of-state and grew into a way to offer support and understanding for families going through similar situations.
- Learn how to create a "Quick View" for your child's medical records. The concept is to create a one-page visual aid that you can hand out to nurses, doctors, and other medical professionals that lists your child's medical alerts, medical background, recent surgeries, and tips for interacting with them.
- This blog focuses on the Expanded Core Curriculum (ECC) for visually impaired students and how to implement it into everyday life. There are posts with topics on all aspects of the ECC and for a range of vision impairments, ages and abilities.
- Parent Advocates for Visually Impaired Children (PAVIC) is a large support network for parents and families of children who are blind or visually impaired.
- NAPVI is a national organization that enables parents to find information and resources for their children who are blind or visually impaired, including those with additional disabilities. NAPVI provides leadership, support, and training to assist parents in helping children reach their full potential.
- MUMS is a national Parent-to-Parent organization for parents or care providers of a child with any disability, rare or not so rare disorder, chromosomal abnormality or health condition. MUMS' main purpose is to provide support to parents in the form of a networking system that matches them with other parents whose children have the same or similar condition.
- Milagro is an active, athletic, adventurous child: female, blind, and described proudly by her parents as a child with a "wild side." This DVD "Letting Your Child's Wild Side Out" encourages parents of kids with disabilities, particularly blindness, to use the strategies they learn in early intervention to raise a child confident in mastering new skills of all kinds.
- If you are just beginning your search for information in response to a recent diagnosis, the first thing you should know is that your child can lead a very fulfilling life with or without eyesight. Your support will provide all the encouragement your child needs; and when you understand blindness and how people do things without eyesight, you can pass this knowledge on and help make that fulfilling life a reality. This site will help you find the best resources for yourself and your child.
- FamilyConnect is an online, multimedia community created by the American Foundation for the Blind (AFB) and the National Association for Parents of Children with Visual Impairments (NAPVI). This site gives parents of visually impaired children a place to support each other, share stories and concerns, and links to local resources.
- Tele-Support Groups for parents of children with visual impairment are open-ended, informative and supportive discussions of issues and topics of concern for parents raising children with visual impairment. These groups are composed of parents with children who have the same eye conditions. They are professionally facilitated and are offered at no cost to parents. They meet by phone on a weekly basis.
- Founded in 1983, the National Organization of Parents of Blind Children is a national membership organization of parents and friends of blind children reaching out to each other to give vital support, encouragement, and information.