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Just for Parents

This section contains information and resources for parents of children with Usher syndrome.

Usher syndrome is one of 9500 rare diseases. It’s unlikely that you had ever heard of it until your doctor mentioned it in relation to your child’s hearing loss. 

Usher syndrome impacts the body in three major ways: vision, hearing, and balance. There are three types of Usher syndrome: Types 1, 2, and 3, which are differentiated by the severity of symptoms as well as the age of onset of symptoms.

Through the Usher Syndrome Coalition and its partners, you can find and meet a community of parents who have "been there," survived and thrived. The resources on this page will help to familiarize you with the ways in which Usher impacts your child, and provide resources and tools to maximize your child’s potential.

If you have resources you think would be helpful to add to this site, please email Nancy O'Donnell at n.odonnell@usher-syndrome.org 

  • This video, made in 2020, will introduce you to three teenagers with Usher syndrome, and parents who share their stories of diagnosis and discovery. Presented by USH Partner, Ava's Voice.

  • A description of the 3 main types of Usher syndrome.

  • If your baby/child is deaf or hard of hearing, you will want to understand the communication choices available to him/her. Here is an overview

  • Hands & Voices is a national organization with the goal of improved educational and social outcomes for children who are deaf or hard of hearing.

  • When a child is first diagnosed, parents report that they are overwhelmed. We understand, and we’re here to help.

  • PREPARING FOR TRANSITION TO PRESCHOOL

    The National Center on Deaf-Blindness (NCDB) provides resources for families whose children will be transitioning to pre-school

  • Services for preschool children (ages 3 through 5) are provided free of charge through the public school system. These services are available through the same law—the Individuals with Disabilities Education Act—that makes early intervention services available.

  • Build a strong team. Develop a good IEP. From audiologists to ophthalmologists to educators at your child’s school, you’ll want to have access to a variety of professionals that will not only support your child but provide a sense of support for you, as a parent, as well.

Resources

  • This nonprofit and USH Partner provides resources for families including; USHResources - tips and a "cheat sheet" download for parents and students; USHthis, a 1-week camp for youth with Usher syndrome; discUSH - a family weekend getaway; USHangouts, a one-day camp for children whose families attend the USH Connections Conference.

  • Authorized by an Act of Congress in 1967, HKNC is the only organization of its kind—providing training and resources exclusively to people age 16 and over who have combined vision and hearing loss.

  • iCanConnect, the National Deaf-Blind Equipment Distribution Program (NDBEDP), provides free access to distance communication equipment to people with significant combined hearing and vision loss who meet the program's income and disability guidelines.

  • Founded by Lane McKittrick, researcher and parent of 4 sons, two of whom have Usher syndrome, Lane of Inquiry serves the deafblind community through expanding and bringing to practice family educational research specific to deafblindness.

  • NCDB works with state deaf-blind projects and other partners to improve educational results and quality of life for children who are deaf-blind and their families.

  • NDC's mission is to close the substantial gaps in education and employment that exist for deaf people in the United States and its territories. They offer many free resources on their website.

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