A deaf mentor is someone who walks through life with a HoH or Deaf person and their family with the same shared experiences because they are also deaf.
Conversations for us have looked like learning ASL, playing, and harder conversations like “our gymnastics class won’t accommodate her hearing loss”.
It can be hard to live in a world of hearing when you don’t hear very well. Her gymnastics uses “listening dots” to grab and listen to instruction. When everyone says “go grab your listening dots”, she has no idea what’s going on and just running in any general direction trying to keep up.
Ruben has deafness in one ear while Payson (the baby), has moderate hearing loss in both ears. She can hear some words (mostly vowels and few consonants) in quiet areas but she tends to stop trying to hear in restaurants, gymnastics, airports, and any noisy location fully relying on ASL.
Apparently there are a lot of deaf/HoH events in the community and I’m looking forward to integrating our family into HER community
Hearing loss can come from Brittle Cornea EDS & GJB2 for both Payson and Ruben. Halston is unaffected and doesn’t have GJB2.
Having a deaf mentor can transform the experience for families navigating hearing loss. From personal observation, I found that these mentors not only share similar challenges but also provide invaluable support in understanding daily life experiences, such as communication barriers and social inclusion. For example, children like Payson, who experience moderate hearing loss and rely on ASL in noisy environments, face unique hurdles in places like gyms or crowded restaurants. The use of “listening dots,” designed to assist with hearing instructions, might not always be effective if the auditory cues are inaccessible. This highlights the importance of tailored accommodations and raising awareness among instructors and peers. Integrating into the deaf and hard-of-hearing community through events and support groups can be empowering. It allows families to connect with others who understand their journeys firsthand, fostering a sense of belonging and shared learning. Moreover, such community engagement enhances language skills and cultural identity, which are essential for social development. From a practical standpoint, learning ASL together as a family strengthens communication bonds and reduces misunderstandings. It also encourages advocacy within educational and social settings to ensure that children like Payson receive the necessary support. Additionally, knowing the genetic aspects, as in the cases of Brittle Cornea Syndrome and GJB2 gene mutations, can inform families about the origins and management of hearing loss. This awareness can lead to proactive healthcare and support planning. In summary, the combination of deaf mentorship, ASL education, community involvement, and understanding of medical backgrounds creates a supportive environment enabling deaf and hard-of-hearing individuals and their families to thrive in a predominantly hearing world.
