about Family Support

A system of care. A community of support.

The great majority of children who are identified with a hearing loss are born to hearing parents. In most cases there is no history of hearing loss in the family, and most know no other families in the same situation. This often leaves parents feeling very alone, and many find themselves searching out others who understand what they are going through.

During the early months of a child’s diagnosis, parents often find themselves being thrust into new and unfamiliar roles. You may suddenly feel the need to become experts on the subject of hearing loss in order to make the right decisions for your child, as well as become advocates for the services your child needs immediately and in the years to come. Initially, this task seems overwhelming for most parents.

infant holds adult's finger

Parents of children with hearing loss face many decisions to support their child’s development across his/her lifetime. The early years are often some of the most difficult to sort out as the diagnosis and early parenting experiences are so new. Parents will quickly find themselves expanding their network of support in a variety of ways as they seek to gather information, knowledge and insights into raising a child who is deaf or hard of hearing. Family support for young children with hearing loss should come from a wide variety of sources and can be categorized as coming from five distinct areas:

  • Existing communities surrounding a family before their child is diagnosed
  • Professionals
  • Other families who have children with hearing loss
  • Deaf and hard of hearing adults
  • Information and resources

Existing Communities

As individuals, each of us has our own network of support based on the personal and professional relationships in which we are connected. Our own families, friends, neighborhood communities and places of worship or spiritual guidance are common connections that create each family’s own network of support. Personal experiences shape the connections we make with our existing communities of support. By virtue of unique experiences parents of children with special needs, including parents of children with hearing loss, often seek out additional resources and information to support their child, their role as a parent and their family as a whole.

 

Professionals

Families face the need to quickly learn new skills, adapt to a changing perception of what they thought their parenting would encompass and who their child would be, and the ability to successfully make important decisions regarding their child’s medical care and development. Parent-professional partnerships are essential to their child’s development. However, understanding what each professional can offer in terms of skills, resources and support can be overwhelming, especially in the early months of their child’s diagnosis.

Other Families

Families have voiced a strong need to connect with other families, both at the time of diagnosis as well as throughout their child’s educational years. Linking families with other families can be an empowering experience for all involved through the sharing of personal stories, experience, expertise, and advice. Families can offer unique support to one another that no professional can offer.

 

Family Support – Statewide Programs

The following statewide programs offer formal support to families of children with hearing loss in Texas:

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Deaf-Blind Multi-handicapped Association of Texas

Promotes and improves the quality of life for all Texans who are deaf-blind multi-handicapped, deaf multi-handicapped, and blind multi-handicapped.

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Texas Chargers, Inc

Encourages, educates, and enriches individuals and families living with CHARGE syndrome.

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Texas Hands and Voices

Offers support, information and resources in an unbiased manner to families with children who are deaf and hard of hearing.  Outreach activities, parent, professional, community collaboration, and advocacy efforts are focused on enabling Deaf and Hard-of-Hearing children to reach their highest potential.

 

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Texas Guide By Your Side

Is a family support program that embodies the mission of Hands & Voices, which is to provide unbiased support to families with children who are deaf or hard of hearing.  Services include providing direct parent-to-parent emotional support, sharing information and resources in an unbiased manner, workshops, trainings, and events for parents and children, networking opportunities with other families, referrals to other programs that serve deaf or hard of hearing children.

The Guide By Your Side program also offers formal opportunities to meet deaf and hard of hearing adults in Texas.  Deaf/Hard of Hearing (DHH) Guides have specialized training to provide families and children with invaluable perspectives that come from personal experience.  Their role is not to provide communication/language services (i.e., to teach families sign language or to share oral training techniques), but to provide helpful examples drawn from direct experience of life as an individual who is deaf or hard of hearing. DHH Guides are often an important link for extended family members who do not have direct contact with service providers, but want to increase their understanding of the unique needs of a family member who is deaf or hard of hearing.

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Texas Parent to Parent

Is committed to improving the lives of Texas children who have disabilities, chronic illness, and/or special health care needs. TxP2P empowers families to be strong advocates through parent-to-parent support, resource referral, and education. In addition, TxP2P educates professionals about the unique needs of our children with the goal of improving care and opportunities for our children. Lastly, TxP2P is dedicated to championing the efforts of a diverse set of parent support groups and advocacy on behalf of our children’s well-being.

 

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Educational Resource Center on Deafness

Brings the resources of the Texas School for the Deaf to the state, as well as, works collaboratively with a variety of agencies, programs, and schools across Texas to create a network of information, services, and support designed to meet the needs of deaf and hard of hearing students, their families, and the professionals who serve them.

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Deaf and Hard of Hearing Adults

Some parents are eager to meet deaf and hard of hearing adults in the early stages of their child’s diagnosis, while other parents are less ready to do so at first. Regardless of when they are ready, most parents have shared that meeting deaf and hard of hearing adults helped them to better understand the various challenges and issues that their children may face as they grow older and offered them hope when envisioning their child’s future.

 

As an EHDI professional, you are in a unique position to help families understand your role as a service provider to support families’ needs and concerns surrounding their children’s diagnosis and development. Professionals who are well informed are able to share a wide array of information and resources with families, including information about other families of children with hearing loss and deaf and hard of hearing adults. We encourage you to use the resources here to inform families about the wide array of information and support that’s available to them as they embark on raising a child with hearing loss. Together we are…

A system of care. A community of support.