Researchers Examine How Family Life Is Affected by Children Who Are Deaf

Editor: It's interesting to stop for a moment and reflect on the history of the "hearing loss movement". SHHH, the first and largest organization for hard of hearing people, is just celebrating its 25th birthday. ALDA came along some years later. We started our website and this newsletter five years ago, because virtually all of the hearing loss information we found online was about being culturally Deaf. Hard of hearing and late-deafened folks currently enjoy a wealth of resources that was unavailable just a few years ago.

We're starting to see a similar expansion of awareness and resources for others who are affected by hearing loss - spouses, kids, parents, etc. We think that's wonderful news! Here's a story from bhNEWS about the effects of a child's hearing loss on the child's family.

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In an August 5, 2004 report from the Kansas City infozine, it was reported that two University of Kansas researchers have reviewed seven years' worth of research on families of children who are deaf and have concluded that, although service providers normally focus on the children, everyone in a family is affected by the child's disability.

In Lawrence, Kansas Ann Turnbull, professor of special education, and Carla Jackson, clinical instructor in speech pathology, had their review published in the spring 2004 issue of Topics in Early Childhood Special Education. Turnbull and Jackson reviewed 17 academic articles published between 1995 and 2002. They wanted to know how the presence of a child who is deaf affects family life in four general areas: parenting, relationships among family members, relationships of the family to others in the social network and access to services.

Two or three children out of a thousand are born deaf or hard of hearing, 90 percent of them to parents who hear normally. The quality of family communication is heavily influenced by everyone's willingness to employ one of the eight communications systems now in common use with people who are deaf, according to the research Turnbull and Jackson reviewed.

Families may experience some isolation as other people pull away after the birth of a child who is deaf. At the same time, the newborn's family may hesitate to engage with the deaf community or attend deaf cultural events. The research review by Turnbull and Jackson found that as parents search for services, they may not find doctors helpful. And in their first years there's a scarcity of teachers for children who are deaf.

Many of the studies reviewed by the KU researchers involved few families. So Jackson is conducting a national survey of 200 families to assess the degree to which the deafness of one member has impacted them in the four areas. Among the findings reported in the articles that Jackson and Turnbull looked at:

a. Families of children who are deaf report improved problem-solving skills.
b. Children who are deaf are less likely than hearing children to maintain a conversation to develop an idea introduced by someone else.
c. Family members who can hear often don't share a deaf child's preferred mode of communication.
d. Parents who have frequent contact with adults who are deaf are more responsive to a child who is deaf
e. but only 10 percent of hearing parents have that contact.
f. Parents who have lots of contact with other parents of children who are deaf, as well as with adults who are deaf, bond with children who are deaf better.
g. Topping the list of things hearing parents do with a child who is deaf is dealing with hearing loss. Working on speech skills comes in second.
h. Mothers who are deaf are better than hearing mothers at getting a deaf child's attention because they use more physical cues to do so.
i. A third of the families in one survey reported negative changes in social relationships after the birth of a child who is deaf.
j. Only one in five doctors was described, in one survey, as "very helpful" by parents of children who are deaf.
k. In a 16-state survey, only 30 percent of early-intervention sites for children who are deaf had a teacher on staff for the children.

Deafness may be the most profound sensory loss. For families, there can be considerable social loss as well, Turnbull and Jackson write in their paper. Such families may spend a lot of time "overcoming barriers to full inclusion in the hearing and/or deaf community."