Resources for Parents of Blind Children: Support & Guidance

We’re thankful you frequent the APH FamilyConnect blog to gather resources and instructional ideas, and to reflect on how to empower your child who is blind or low vision to set their expectations high and reach their goals. We understand, however, that while the APH FamilyConnect blog is a robust resource, it has a limitation—it delivers information and inspiration but is not a two-way conversation. Parents of children with unique experiences benefit from interacting with each other. We’d like to highlight the benefits of family support groups, as well as share resources to launch or join one.

Why a Support Group?

A parent-to-parent support group for those with children who have unique needs provides a space to:

  • inform each other from first-hand experience
  • share stories
  • vent frustrations
  • discuss fears
  • problem-solve
  • feel validated and supported
  • seek and provide recommendations for services, assistive technology, and accommodations
  • communicate about the pros and cons of particular services
  • learn from more seasoned parents
  • impart wisdom to less seasoned parents
  • celebrate and appreciate each child
  • discuss coping skills
  • plan get-togethers for your children and families
  • form lifelong relationships
  • know you are not isolated
  • feel understood

Keep in mind you won’t find your children are all alike. Blindness or Low Vision is simply one characteristic of each represented child. And that’s a good thing!

Where to Find Support

You may want to meet in-person with other parents, possibly with the option of giving your children who are blind or low vision an opportunity to support one another, as well as providing a sibling support group. To connect with other families, talk with your child’s teacher for students with visual impairments and orientation and mobility specialist, reach out to a large Facebook group for parents of children who are blind or visually impaired, and contact the nearest school for the blind and other local service providers. You may find existing support groups when reaching out, or you may be spreading the word about your desire to launch a group and to seek members.

Consider meeting at a public library to take advantage of free meeting space or rotate hosting at homes.

National Organizations

Determine if your child’s eye condition has its own family support group. Take for instance the National Organization for Albinism and Hypopigmentation (NOAH)’s New Parent Program, Usher Syndrome Coalition’s Connection Conferences, and Charge Syndrome’s Tele-Support Group.

Certain eye-condition-specific support groups can be found as Facebook groups.

  • https://www.facebook.com/groups/CVINow/ The CVI Now Parent Facebook group is our space to connect, share, collaborate, and get answers. We have productive and rich discussions and hold space for all that comes with raising a child with CVI. You can count on being the first to know about current CVI research and new resources published on CVINow.org. The group holds virtual events with a wide range of professionals in the field to help answer our questions and dive deeper into topics we care about. There are many pathways and strategies for success for our kids with CVI, and all questions and ideas are welcome. Not all families follow the same journey, but we all have insights, stories, and guidance to share. Join our amazing community!
  • National Federation of the Blind’s National Organization of Parents of Blind Children
  • The Lighthouse Guild sponsors tele-support groups for families with children with cortical visual impairment, retinopathy of prematurity, Leber congenital amaurosis, autism and blindness/ low vision, Hermansky-Pudlak syndrome, CHARGE syndrome, albinism, and other rare eye conditions. The CVI group meets for one hour on Tuesday evenings at 8:30 pm EST. Guest speakers such as CVI professionals present once or twice monthly to support families across the US and the world. Families of children ranging from infants to teenagers can find support and community during our tele-support group. Register to join the next meeting at Tele-Support for Parents – Lighthouse Guild or email Judith at [email protected].
  • Thriving Blind

Regional Support Groups

Center for Parent Information & Resource; find your local center.

Idaho Parents of Blind and Visually Impaired Children https://www.facebook.com/groups/214613818642976/

Missouri School for the Blind Outreach we have the MoSPIN program which trains parent advisors to give assistance to birth – 5 students and their families. The Lead Parent Advisor is Melissa Moore ([email protected]) and our Family Engagement Coordinator is Thea Meyer ([email protected]).

Parents of Blind Children New Jersey

New York Deaf Blind Collaborative https://nydeafblind.org/

New York Deafblind Parent Group https://nydeafblind.org/family-engagement/

Ohio Deaf and Blind Education Services on Family University.

Texas Hand and Voices

The Virginia Parents of Blind Children (VAPOBC) is a division of the NFB of Virginia. Its mission is to offer support, information and encouragement to families and friends of blind/visually impaired children. We connect families to each other and to blind role models in the community. We offer support, guidance and shared experiences about education, braille, orientation and mobility, technology and scholarships. We sponsor seminars and workshops for parents at the NFBV State Convention and beyond.  Sign up for our mailing list, so HERE. If you need help signing up, please do not hesitate to reach out to [email protected].

VA Facebook Group for Parents of children who are Blind & Vision Impaired

Join the Virginia Parents page on Facebook – a page where we (parents of blind children) can ALL share information and connect.

Online Support Groups

Alternatively, take part in an online family support group such as ParentConnect: A family support Group offered in partnership with the Virtual Parent Support Group Chicago Lighthouse for the Blind. The APH ParentConnect group meets for an hour from 7:30 PM to 8:30 PM (Eastern time) on the first Wednesday of every month. This is a free live discussion group open to any family member of a child who has a visual impairment or blindness.

Many organization groups have a Facebook presence as well. You can find links on the organizations’ websites, or you can search Facebook for the organization that represents your unique needs.

Whichever route works best for your family, reach out and link arms with other families.

FAQ

Are there online resources for parents or families with children who are new to blindness?

FamilyConnect has two Getting Started Guides which covers many topics, shares online resources and information for families who are raising a child with blindness or low vision.

Are there places on social media that provide support to families?

Facebook groups can provide a space to ask questions of those who are further along in their parenting journey. Some groups are support to a specific diagnosis such as OHN & SOD, Albinism or CVI. While others are more general support for families of a child with blindness.

What should I expect from participating in a support group?

Confidentiality: A respectful environment where personal experiences are shared in confidence.
Diverse perspectives: Insights from parents at different stages of their journey.
Resource sharing: Access to information about services, technologies, and strategies.
Emotional support: A community that understands and empathizes with your experiences.