A Parent Guide is an specially trained parent of child or children with deafness or hearing loss who work as a “Guide” directly with families who have just learned their child cannot hear, or who have older children and are in need of the unique support that comes from someone else who has walked this path him/herself and can share from direct experience and wisdom.
I was born and raised in Tucson. I live there with my husband Lee, my son Riley (born in 2000), and my daughter Sabrina(born in 2005). Sabrina is hearing. Riley was born 12 weeks early and spent the first 7 weeks of his life in the NICU. He passed his newborn hearing screen but at age 4, was diagnosed with moderate to severe bilateral sensorineural hearing loss and Auditory Neuropathy. He has worn hearing aids ever since. Because he was diagnosed so late, he had learned to lip read and was oral. Because he had a speech delay, he had been enrolled in Early Intervention and received speech therapy since he was a baby. I am so thankful for that because, without that, he could have been so behind in language, as we did not know he was hard of hearing. We took some ASL classes but Riley prefers to be oral. Riley has helped guide us on this journey with what works best for him. Riley is mainstreamed and is doing very well. He is in The National Honor Society, has started driving and looking at colleges. Riley is interested in pursuing a degree in Engineering. We are very proud of the young man he is becoming.
I have been a member of Arizona Hands & Voices and a Guide by Your Side Parent Guide since 2008. I was so happy to find this organization and to know that we weren’t alone. It has been a great experience for my son to meet other kids who are similar to him. It has been wonderful meeting other parents and supporting and learning from each other.
I’m a mom of two little girls, ages 3 and 1, who are both hard of hearing. Both girls have been diagnosed with EVA and Mondini and with the help of genetic testing for my oldest determined they have Pendred Syndrome. Natalie, our oldest, received a cochlear implant on her left ear when she was 16 months old and has a hearing aid in her right ear. She just started mainstream preschool and is loving it. Julia wears hearing aids in both ears. We have also enjoyed learning ASL together as a family.
I’ve been a member of the Hands & Voices organization from the beginning and became a parent guide a year ago. I love getting to know and talking to other parents who are going through some of the same experiences we are. Meeting new friends through this journey has been one of the greatest blessings we could have received after the surprise of our girls’ diagnosis.