Susie’s* mother, Mary*, describes her daughter as a happy 2½-year-old who enjoys dancing, animals, and the outdoors. As an infant, Mary noticed that Susie seemed to always be taking in the world with her eyes. However, she didn’t suspect that the root of her daughter’s use of her sense of vision might be a hearing impairment. They learned about this after a hearing exam at the age of 13 months. This exam and further testing revealed that Susie had a sensorineural hearing loss. This was particularly surprising for their family since Susie had passed her newborn hearing test and had also been receiving early intervention services based on a global assessment she had at the age of 6 months.
Mary has lots of experience being an advocate for her children since Susie is not the first of Mary’s children to be diagnosed with a disability. Yet she has had to advocate for Susie in a lot of ways that are different from her other children. “I think that involvement [in therapy and service delivery] is up to the parent,” Mary says. She has been able to make informed decisions about many things thanks to her own knowledge as well as that of parents who are a part of an Internet support group for children with hearing impairments. “[These emails] are always the first thing I go to when I check my email,” she said. Early intervention providers also have been an important source of information for Mary. For example, Mary and her husband decided to proceed with getting their daughter a cochlear implant. She remembers the experience of having to quickly decide which implant to get with a limited amount of knowledge about the pros and cons of each. Her child’s speech language pathologist and developmental therapist for the hearing impaired were very helpful with this decision. In addition, these therapists and others always have Mary’s entire family in mind when they come across new resources.
Susie’s family and service providers have also made many collaborative decisions about Susie’s early intervention services. She doesn’t find separate parent-provider or provider-to-provider meetings to be helpful in this collaborative process. One decision was choosing to take an oral approach to Susie learning to communicate. While at some point mom would like Susie to learn how to use sign language, this is not a current intervention focus. Mary feels that early intervention is a time when Susie can learn speech, and learning sign can come later. Mary has also maintained some in-home services when Susie began attending a school for children with hearing impairments. She has also found it to be extremely helpful when service coordinators and providers take the time to research disability-specific services and resources. In the future, Mary would like for Susie to be in a school setting that includes children with and without hearing impairments.
About this Family Story
“From a Child’s Eyes” by Lisa Ellis. IDEC Newsletter, Volume 14, Issue 2. Used with permission.
*Names changed for confidentiality purposes.