When a child is born with a craniofacial anomaly, this often increases a parent’s anxiety and there is a need for social and emotional support. It is for this reason that the program offers a monthly parent support group that provides a forum for parents to meet and discuss issues and concerns or just socialize with other parents of children with cleft lip/palate. Our support group meets once a month and provides a forum for parents to meet and discuss issues and concerns or just socialize with other parents of children with cleft lip / palate. It is also a good opportunity for the children to meet each other. The nurse coordinator and social worker co-facilitate the group. Occasionally adult volunteers are invited to come and talk about their experiences of growing up with a cleft lip/palate and how their parents handled it. These types of interactions have proven to be very beneficial to parents and expecting parents.
If parents are interested in this support group they can contact Mary Breen, the nurse coordinator or Nick Conde-Dudding, the social worker, at 512-324-0918.
For parents who have a child with other craniofacial issues that desire to speak with other parents that have a child with the same or similar issue then the nurse coordinator or social worker can help link up families to each other for support.
Family Fun
Several times during the year the Cleft Lip/Palate program has family events in Austin. The first event of the year is a spring family picnic. As a great way to end the year, we have a holiday party in December with arts and crafts, snacks and a picture with Santa. These get-togethers provide a great opportunity for families to meet each other and for a family to spend valuable time together.
Social Work Services
Parents and caregivers have the opportunity to speak to the social worker during their visit to the Craniofacial Program. The social worker can assist with a wide range of needs. The following are some of the areas in which the social worker can be of assistance:
- Help find appropriate HEALTH INSURANCE
- Refer to appropriate community resources for BASIC NEEDS such as food, clothing, housing, help with utility bills and rent
- Help find RECREATION PROGRAMS for special needs children
- Refer to COUNSELING SERVICES to help meet a child's emotional and behavioral needs
- ADVOCATE for the child in the school system and/or identify a community agency that will advocate for the parents/caregivers.
- Assist with finding appropriate PHYSICAL, SPEECH and OCCUPATIONAL THERAPY for the child.
- Connect the family with a community CASE MANAGER to help the caregivers coordinate the child's medical care and help with other necessary needs
- Refer parents to PARENT SUPPORT groups or community agencies that offer various services
Child Life Services
The Child Life Department at Children's Hospital of Austin is a vital component of your child's healthcare team. Staffed by professionally trained individuals, our Child Life teams help children and their families cope with the emotional and psychological stress of hospitalization, illness, surgery and medical treatment. Trained to work with children in the hospital setting, our specialists act as advocates for patients and their families.
