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.
Our journey started in 2009 with the birth of our daughter, Isabella. At birth, Isabella failed her hearing screening and since then we have been on this journey. Now, our family of 5 includes myself, my husband Nathan, Isabella, and our two boys, Roman (5) and Nathanael (2) who are both hearing.
Isabella is deaf and what we call a total communication kiddo. Bilaterally implanted, she uses her voice when she chooses but considers American Sign Language to be her primary mode of communication. Over the years, she has learned to advocate for herself and her communication preferences. Our family has learned, and continues to learn, sign language to communicate with her. Isabella attends a dual enrollment program here in Tucson and is happy and thriving. She also plays sports and participates in the deaf community at ASDB.
I joined Hands and Voices with the desire to support parents – especially Spanish-speaking families. My family believes every child is unique and so are their needs. Meeting and interacting with other families like mine is a blessing and a huge support.
I am a mom of three, Sofia (6), Yovani (3) and Jonathan (1). Sofia and Jonathan are both hearing. Yovani is Hard of Hearing Plus, which means he has multiple challenges. He has late-onset hearing loss. At 18 months, he was diagnosed with ZTTK Syndrome, a rare genetic disorder. When he was 2, he had surgery for his third set of ear tubes and a sedated ABR. It was there that he was diagnosed with a hearing loss. He wears hearing aids and has miraculously kept them on since day one – I’ve been told that’s not always the case. Yovani attends a developmental preschool, which has helped him progress so much developmentally and socially. His teacher wears an FM system and we use one at home as well. He is a little guy full of life that loves to play with his sister and brother. I am still learning what it means to be on this journey and I continually see how my son has inspired me to have a new understating of life.
I became a parent guide to provide support to families and let them know that even though our paths might be different, they frequently cross each other. Being able to meet new families and gain new friendships and perspectives along the way has been priceless.
Hello! Let me present my family I have two sons Gerardo who is 15 soon will be 16 (WOW!) and Jordy my youngest who is nine. My husband Gerardo Sr. and myself Ana. Our story starts with Gerardo who was a premature baby and was born at 25 weeks weighting only 1lb .5 oz. Gerardo was in the hospital for 5 months having to go through various surgeries and many other difficulties. However, the day FINALLY arrived and Gerardo was released on March 2004. It was such an amazing feeling to go home, but he failed his hearing screening and had to go home with a vital checking machine and oxygen. Once we had our follow-up appointment with the audiologist, they informed us that he had a severe to profound hearing loss and was given his hearing aids at 8 months old. We started learning American Sign Language to communicate with Gerardo and we are still learning. Gerardo was never able to talk even though he received speech. Speech was discontinued once he entered 3rd grade. Gerardo is also visually impaired he was diagnosed with Cortical Visual Impairment. We are still learning about CVI. Now Gerardo has started his sophomore year in High School.
Our journey is still going and we are learning together. Working hard and striving.