MY GUIDE Newborn Up To Age 1 > Connecting with Families Who Have Children with Visual Impairment, Blindness and Deafblindness

KEYWORDS: age 1 up to age 3age 3 through 5connecting with famliesfamily life and supportnewborn up to age 1

A powerful resource for you  

Connecting with other families and support organizations is a critical way to learn tips, skills and coping strategies for parenting a child with a visual impairment, blindness, deafblindness or a dual sensory loss. These family-to-family connections are perhaps the most helpful and powerful resource available to you. As parents ourselves, we urge you to reach out. These programs, organizations and resources can help you get started.

 

Texas School for the Blind and Visually Impaired

The Texas School for the Blind and Visually Impaired (TSBVI) Outreach Program lists many helpful parent connection resources, including state and national parent organizations, and a listserv for both English- and Spanish-speaking parents. Also, you will find links to state agencies and programs that can help you connect with DARS-Early Childhood Intervention, DARS-Division for Blind Services, DARS-Deaf Blind and Multiple Disabilities Program, and more.

Family Matters is a blog from TSBVI for parents of children who are blind, have a visual impairment, deafblindness or dual sensory loss.

Check out the TSBVI Parent Portal where you will be guided to find more resources. 

 More support groups and organizations   

Texas Association for Parents of Children with Visual Impairments (TAPVI) is a support group for parents and families that sponsors community outreach and gives families information and referrals for programs. Parents have opportunities to network, share information about resources and programs, and develop ways to increase public awareness and inclusion opportunities for their children.

Texas Parents of Blind Children (TPOBC) is the state chapter of the National Organization of Parents of Blind Children (NOPBC) and a division of the National Federation of the Blind of Texas. This organization of parents and friends of children who are blind helps families find support, encouragement, and information. 

ONH Families of Texas is a Yahoo group of parents who have children with optic nerve hypoplasia. These parents connect through online discussions on Yahoo and their Facebook page.
To subscribe:
 onh_texas-subscribe@yahoogroups.com

Texas Chargers 

Texas Chargers is a family support organization for families who have a child with CHARGE Syndrome. They sponsor an annual retreat where families, professionals, and paraprofessionals can learn from international experts and researchers, share information, network and support each other. Financial support for attending the retreat may be available from your local DARS-DBS and/or DARS-DHHS support specialist.

You can get individual family support from the Texas Chargers board member liaisons. They can help you understand the syndrome and the Texas Chargers organization.

You can connect with other families not only during the annual retreat, but also through Facebook, email, the Texas Chargers website, and local meet ups. There is not a fee to join this organization. It is supported financially by TSBVI, the Regional Education Service Centers, donations, and volunteers.

Deaf-Blind Multihandicapped Association of Texas (DBMAT)

Deaf-Blind Multihandicapped Association of Texas (DBMAT) is an organization of people who are deafblind, their families, and people who work in the field. Families from all across Texas gather at the annual DBMAT conference where they learn about deafblindness from experts and other families. This is a good opportunity for you to network with families as you find and give support to each other. TSBVI works closely with DBMAT. These resources provided by DBMAT can help you learn more about deafblindness.

Other parent connection resources

Family Connect is from the American Foundation for the Blind and the National Association for Parents of Children with Visual Impairments (NAPVI). Parents can use this site to support each other and find links to local resources. Other features include a blog, family testimonial videos, and expert information about visual impairments, as well as the laws that are the foundation for special education services.

Texas Hands & Voices™ is a parent-driven organization for Texas families that have a member who is deaf or hard of hearing. This program provides support, information, and help to access other resources.

Texas Parent to Parent is a group dedicated to building parent-to-parent support for parents of children with disabilities, chronic illness, and special health care needs.