Guiding Families From Identification to Intervention in Rhode Island We were called back to the hospital unexpectedly for a repeat hearing screening,” recalled Bonnie Roy of her son’s early diagnosis of a mild-moderate sensorineural hearing loss. Jacob, her third son, was delivered by a cesarean section that required a five-day hospital stay. Returning to the hospital “was more a ... Features
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Features  |   May 01, 2003
Guiding Families From Identification to Intervention in Rhode Island
Author Notes
  • Mary Jane Johnson, a teacher of the deaf, is a member of the FGP staff, which also includes Debra Topol, an early communication specialist; Marianne Ahlgren, an audiologist/linguist; and Jen LeComte, a social worker. They can be reached by phone at 401-222-4013 or by e-mail at stumpjohn@aol.com.
    Mary Jane Johnson, a teacher of the deaf, is a member of the FGP staff, which also includes Debra Topol, an early communication specialist; Marianne Ahlgren, an audiologist/linguist; and Jen LeComte, a social worker. They can be reached by phone at 401-222-4013 or by e-mail at stumpjohn@aol.com.×
Article Information
Hearing Disorders / Special Populations / Early Identification & Intervention / Features
Features   |   May 01, 2003
Guiding Families From Identification to Intervention in Rhode Island
The ASHA Leader, May 2003, Vol. 8, 16. doi:10.1044/leader.FTR4.08102003.16
The ASHA Leader, May 2003, Vol. 8, 16. doi:10.1044/leader.FTR4.08102003.16
We were called back to the hospital unexpectedly for a repeat hearing screening,” recalled Bonnie Roy of her son’s early diagnosis of a mild-moderate sensorineural hearing loss. Jacob, her third son, was delivered by a cesarean section that required a five-day hospital stay. Returning to the hospital “was more a bother than anything, especially since our pediatrician said there was nothing to worry about,” she said.
Like all newborns in Rhode Island, Jacob had received a hearing screening by the Rhode Island Hearing Assessment Program, one of the first programs to begin early hearing detection and intervention in 1993.
The experience of the Roy family—and their response to newborn screening—has had an impact on the state’s health care professionals. “When the audiologist told me Jacob had a hearing loss, I cried,” Roy said. “The audiologist showed me how hearing aids would help, and how he would do very well. But I was devastated to learn that my baby would need hearing aids.
“I couldn’t stop thinking about my own mom, who has hearing loss—not about what a successful mother and wife she was, but how hard it was to talk to her at times. It wasn’t what I wanted for my son,” she said. Roy’s aunts also have hearing loss, and after Jacob’s early identification, her mother was diagnosed with Usher’s syndrome.
As part of her introduction to Rhode Island’s early intervention system, the audiologist gave Roy a resource guide, which included information on the Family Guidance Program (FGP).
The FGP at the Rhode Island School for the Deaf has been working with families for many years, most of them in the years before newborns were screened. As FGP learned more about families’ needs following a diagnosis of hearing loss, the program focused on redefining the roles of counselors, speech-language pathologists, and teachers of the deaf.
The emotional impact on parents at the time of diagnosis and during intervention can be intense. “My husband didn’t seem as emotional about it, maybe because he hadn’t lived with a family member with hearing loss, as I had,” Roy said. “But for me, it was an uncertain time, and I desperately wanted answers. I think I knew that this was actually quite simple, but it didn’t feel simple. It felt overwhelming.”
Responding to families’ needs for emotional support requires new skills and perspectives. FGP is currently collaborating on a research project funded by the Centers for Disease Control and Prevention, with the goal of identifying the kind of support that has empowered families as communicators, parents, and advocates for their children.
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May 2003
Volume 8, Issue 10