Resources for parents of youth with Usher syndrome
- Sign your child up in our USH Trust registry, the largest international registry exclusively for the Usher community. It will assure that you get the latest info on research and will also help us to grow and and connect the Usher community across the country and around the world
- Just for Young Adults, our web pages that include stories/suggestions from college age students who are passing on their experiences to their younger peers.
- A FB group for young adults so that they can communicate privately with each other on topics relevant to them. It is facilitated by one of our volunteers, a woman with Usher syndrome herself. Email: firstname.lastname@example.org
- Our USH Partner, Ava's Voice, hosts USHthis Summer Youth Camp for campers with Usher syndrome, ages 11-14. Youth with Usher syndrome, ages 15-17, can apply to be counselors in training, and young adults with Usher, ages18 to 24 can apply to be a lead counselor. Ava's Voice is an official partner of the Usher Syndrome Coalition. For more information about camp, go to Ava's Voice FB page: https://www.facebook.com/avasvoice.org
- Webinar: Educational Considerations for Students with Usher Syndrome Two moms talk about the accommodations their kids needed/received throughout their school years, through college.
- Attitudinal Barriers Faced During My Adolescent Years Regarding Career Options
- Annual USH Connections conference. This year it will be a virtual week of presentations and live group events. Participants can connect with each other via a mobile app.
- Information in ASL: The "first ever" series of 25 short ASL videos about Usher syndrome, presented by Kevin Richmond, an adult with Usher. Also includes several scientific USH Talks translated into ASL by native Deaf signers.
- Transition Tips in ASL from the Disability Law Center
- Publications related to Usher:
- Counseling Students Who Have Usher Syndrome, Patty Lago Avery
- Thoughts on Transitioning by Amelia Westerfield (starts on page 5)
- Usher Syndrome in the School Setting, Miner and Cioffi
- Other resources:
A group to support parents of kids with Usher Syndrome. We are specifically focused on finding information and treatment.
A private FB page for young adults, ages 17 to 30.
A group for Mom's of adult children with Usher to share about their adult child with Usher syndrome--Mom to Mom.
Books about Hearing Loss for Children
Three Cheers for Bunny Ears
Hearing by Rebecca Rissman on Amazon
Mila Gets Her Super Ears
Learn more: https://www.amazon.com/dp/B087637F54/ref=cm_sw_em_r_mt_dp_U_T5YWEbNXKN47K
Learn more: https://www.amazon.com/dp/097600111X/ref=cm_sw_em_r_mt_dp_U_DPYWEbP2Q32M5
Hearing (The Five Senses)
by ThriftBooks - Squared
Learn more: https://www.amazon.com/dp/1432936867/ref=cm_sw_em_r_mt_dp_U_QDYWEbBG3XBX3
Not about hearing loss but rather the unique traits that make us look or feel a bit different. It can help us realize that no matter our abilities, strengths or weaknesses, each of us is precious, rare, and beautiful!"
I'm Basically a Unicorn
Learn more: https://www.amazon.com/dp/1734165065/ref=cm_sw_em_r_mt_dp_U_8UYWEbQZEWY8P
This is an article about books for children and adults about hearing loss.