Cleft Palate Foundation

Connections 2006 Wrap

HEROES: PARENTS AND PSYCHOSOCIAL DEVELOPMENT The 2006 Connections Conference

The power of the role of parents in the healthy psychosocial development of children born with clefts and craniofacial anomalies was a major theme of the 2006 Connections Conference.
By Lisa Gist, MA
Cleftline Manager

Even if they began the day, as many parents might, uncertain about the role and impact they have in their children’s lives, parents participating in Cleft Palate Foundation’s Connections Conference had many reasons to end the day assured that they are a powerful core and center of their children’s social, emotional, and physical health. The 6th Annual Connections Conference, convening Saturday, April 8 in Vancouver, British Columbia, found participants in various settings — both in small and large groups — and participating in dialogue with other patients, families and professionals.

Getting Started

Parents matter: The role of parents in the social and emotional development of young children, presented as the keynote address by Mary Mike Craddock, PhD, established the vision and foundation for the day’s discussion. Dr. Craddock emphasized that, “A child’s temperament, relationship with parents and other important early experiences have a strong influence on how children develop.” She went on to encourage parents to see the parent-child relationship as a critical resource and variable in nurturing healthy growth and development throughout childhood and its experiences. Enthused by Dr. Craddock’s presentation, parents rounded out the hour’s keynote with their participation in a brief question-and-answer session that explored roles of parents in schools, in the working relationship with a treatment team, and preparing children for their experiences with doctors’ offices and hospitals.

Around the Table

Late morning and early afternoon round-table discussions gave conference participants access to specialists focusing on more narrowly defined topics such as genetics, psychosocial issues across the developmental spectrum, and issues specific to experiences within the classroom and with educators. Psychologists, Drs. Rebecca Gaither and Margot Stein, and Betsy Wilson, child life specialist, each met with small groups and fielded specific questions about potential psychosocial issues for individuals with facial differences for school-aged children, teenagers, and adults. Genetic Counselor, Elizabeth Kramer, met with parents for introduction to and discussion of basic genetics issues and Lorine Scott, nurse practitioner, helped parents brainstorm ways to work and communicate with educators about their child’s individual needs. This small-group format created an informal atmosphere that was conducive to parent-to-parent conversation and was complemented by the support of a professional.

Recognizing Blessings in Disguise

Having had some time to discuss and share concerns and interests within the round-table sessions, conference participants convened again as a large group to meet with the Blessings in Disguise panel, facilitated by David L. Jones, PhD, speech-language pathologist at the University of Wyoming. Featuring Greg Markham (13) and his mom, Angela; Logan Bristow (17) and her mom and dad, Laurie and Sonja; and Claire Crawford (16) and her mom Leigh, the panel was built of families who have navigated many of the medical and psychosocial experiences of having a child born with a facial difference.

The many specific questions from conference participants seemed to arise from the culmination of the ideas discussed throughout the meeting:

“What did you do with your baby pictures?”
“How did you explain to peers about your [lip, nose, mouth, etc]?”
“How did you feel about going to school?”
“What did [his or her] siblings think and what did you tell them?”
“How did you feel about having another child when your first had a cleft?”

Panelists responded with candor and enthusiasm. Corporately, they commiserated about the uncertainty in the early days about displaying photos but shared consensus that sooner or later they concluded that they didn’t display baby pictures because of how the baby looked, they displayed baby pictures because the subject, “...was their baby!” Panelists went on to describe their various feelings about valuing their children’s history, whether it was photos of infants with cleft lips, or little-league baseball photos. Several panelists noted that displaying newborn photos had a way of making the facial difference seem less defining of their child than if they had not displayed them at all.

Panelists shared some of the language they learned was most helpful in talking with others about their children’s facial differences, “We told her friends that she was born with a boo boo on her lip and a doctor made it better, so now she has a little scar where the boo boo used to be.” Panelists also recalled some of the apprehension they had as parents about their children entering various social situations like school or even going shopping in a grocery store. One panelist noted, “Yeah, I think there was a little teasing at times, but our child had already learned from us that he was okay, so I think the teasing didn’t have much impact.” This insight about the power of the role of parents in the healthy psychosocial development of children underscored the theme of the Connections Conference and articulated a rich segue to the day’s concluding presentation.

At Its Best

Having seen and heard some of the examples of what life might look like in the years to come, conference participants turned their attention to the day’s closing remarks offered by Dr. Kiti Freier, professor of psychology and pediatrics at Loma Linda University and Children’s Hospital in Loma Linda, California. Dr. Freier began her remarks with a brief introduction to the research in the area of perceived child temperament and parental stress and those variables’ impact on the parent-child relationship. She went on to emphasize the importance of healthy support systems for parents and families and of parents seeing themselves as integral to the well-being and health of their children.

Going Home

As conference participants moved to more casual conversation at the post-conference reception, they shared some of their thoughts and ideas about the day via a brief written evaluation. The recurring themes were that participants were most benefited by the opportunity to meet other patients, parents, and families and to talk with families who were further along in their post-medical-care life. Frequent mention was made for a greater number of participants so as to have access to more shared stories and experiences. Most evaluation responders indicated that having access to professionals who were not members of their own treatment teams helped them feel comfortable asking questions that they might not ask otherwise. Suggestions for improving the Connections Conference revolved around enlarging the focus to include more discussion and representation of other craniofacial-anomalies, particular those that still dramatically affect physical appearance even after repair interventions have been exhausted.