Linking Arms: Support Groups for Parents of Children Who Are Blind or Low Vision

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.

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.

ThrivingBlind

APH FamilyConnect partners with Thriving Blind (@ThrivingBlind on Facebook) which is a free resource for families offered by parent and advocate Kristin Smedley. Learn more about Kristin’s journey as a parent of two blind sons on the APH ConnectCenter YouTube channel.

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

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