Joshua's Story
Determining the Benefits and Challenges of Cochlear Implants for Children with Combined Hearing and Vision Loss
Children Who are Deaf-Blind with Cochlear Implants
Joshua was born in July 2005. His hearing and vision losses occurred as a result of congenital cytomegalovirus (CMV) infection. Babies who are exposed to CMV before birth may have hearing and vision loss and other problems. Joshua was born deaf in his left ear. He is also near-sighted and had problems with the alignment of his eyes that required vision therapy and surgery.
Although he had some developmental delay and balance issues as a result of his vision and hearing loss, Joshua made a lot of progress during his first few years. He began walking at 18 months (and once he started there was no stopping him!). He also had good speech and language development. However, in April 2010, he lost the hearing in his right ear and his speech began to deteriorate. He lost skills he had gained such as knowing the names of colors and how to count and spell his name.
Joshua’s mom, Kenya, decided that Joshua should have bilateral cochlear implants, but she struggled with this decision. “I was hoping the hearing in his right ear would come back,” she said, “but it didn’t.” “And,” she reasoned, “we hear with both ears, so I thought it wouldn’t hurt to have both implanted. If something happened to one, then he would have the other one to fall back on. . . . It made me nervous at first, but I’m glad we did it.”
Joshua received the implants in September 2010 (they were activated in October 2010). At first he didn’t want them. He would take the batteries out and put them in a drawer, but since realizing that he can hear with them and cannot hear without them, he has been eager to wear them whenever he is awake. The first thing he does in the morning is to ask to have them put on. He knows which ear each implant goes on (one has been marked with a red dot and one with a blue dot).
Joshua is now 5 and Kenya says that, “He’s really doing an excellent job.” His speaking ability has improved and he is learning again and starting to regain many of the skills he lost. He still has some developmental delay and receives physical therapy (PT) and occupational therapy (OT) at school. His balance difficulties are improving with PT and in OT sessions he has been working on cutting paper with scissors, holding a pencil correctly, and stringing beads.
Joshua is currently in a special classroom for children in kindergarten through grade 2, but is being transitioned from that classroom and spending time in a regular classroom for part of each day.
When asked what advice she would give other parents Kenya said, “It’s a big step, a major step, but you have to have patience with the whole process. You have to have patience and understanding. Read up on it, don’t hesitate to ask questions, and keep up on your therapies because they are helpful for both the parents and the child.”
Funded by the U.S. Department of Education, Office of Special Education-Technology and Media Services for Individuals with Disabilities (CFDA 84.327A). Grant H327A080045; Project Officer, Maryann McDermott. Opinions express within are those of the project/author and do not necessarily represent the position of the U.S. Department of Education.
