Deafblindness: An Overview and Resources
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Resources for Families
As a parent of a child identified as deafblind, it’s normal to feel overwhelmed and uncertain. Knowing that resources are available to support you and your child on this journey is essential.
First and foremost, seek a team of professionals who can provide guidance and support. The team may include a pediatrician, audiologist, ophthalmologist, neuro-ophthalmologist, a Teacher of Students with Visual Impairments (TVI), Orientation and Mobility (O&M) specialist, Teacher of the Deaf (ToD), and/or early intervention specialist and school-based team members, including your child’s Occupational Therapist, Speech and Language Pathologist, or Physical Therapist. These professionals can help you understand your child’s needs, advise on communication strategies, and recommend resources and services in your area. These organizations offer a range of resources and support for parents of children identified as deafblind, including information on education, assistive technology, advocacy, and more.
It’s also essential to connect with other families who have children who are deafblind. These organizations can provide meaningful resources and support unique to your child and your family, a sense of community, and a space to learn from other families.
An organization that supports state deafblind programs and offers a range of resources and services to support the education and well-being of children who are deafblind. Resources include research and development, teaching practices, an assessment tool, interventions for children who are deafblind, and a section specifically for families. Services include training, consulting, a national registry, and training opportunities.
A state-specific organization that can support your family and child from birth to 21-years of age. Your state deafblind program can help you understand deafblindness and your child’s needs and provide consultation with your child’s school team.
An organization with a mission to empower and support families, promote awareness, and advocate for the needs and interests of individuals who are deafblind. They offer various resources, including a family support network, education and training, and advocacy efforts at the national level.
An organization with information on rare genetic disorders identified as being at risk for deafblindness, such as CHARGE syndrome, Usher syndrome, and peroxisomal disorders. Other prenatal and postnatal complications are also at risk of your child becoming dual sensory impaired. NORD can help you find community support—your key to connecting with others.
This provider of education specializes in education and services for individuals with blindness, low vision, or deafblindness. Their services are individualized to each child’s unique needs, emphasizing communication, independence, and self-advocacy. They also operate a research and training center. This center advances knowledge and best practices in blindness, low vision, and deafblindness. Perkins School for the Blind is committed to empowering deafblind children, aiding them in achieving their full potential.
This organization offers diverse services for young adults and adults who are deafblind. These include assessment, training, vocational rehabilitation, and community outreach. They feature a National Training Team program too. In this, deafblind individuals receive on-site training and support from trainers in their own communities. The organization aims to build a supportive, inclusive community for those who are deafblind. Their focus is on promoting independence, self-determination, and empowerment.
You are Not Alone
Specialized services for children who are deafblind are tailored to meet the unique needs of each child and family. As the parent, you are your child’s first teacher and expert in knowing them better than anyone else. These resources, supports, and services can help your child overcome challenges, develop communication and life skills, and achieve their full potential. Remember, as a parent of a child who is deafblind, you are not alone. Connecting with other families through organizations will be invaluable to you and your child. Here are some suggestions.
- Ask your state deafblind program what family activities and family groups they offer.
- Check etiology specific organizations/foundations for parent support groups such as CHARGE Foundation, Usher Coalition, NORD, Trisomy 18, etc.
- If your child has cortical vision impairment, you can join the Lighthouse Guild’s tele-support group.
- Family-to-Family Communities (F2FC) is a collaborative group of state deafblind programs that provide families a safe place to feel supported and encouraged by other families whose child is deafblind.
With the right resources and support, you can help your child thrive.