Cleft Palette: 3 Strategies To Help The Family

Cleft Palette: 3 Strategies To Help The Family

Dealing with questions, coordinating care and working with community resources becomes overwhelming for many families of children with cleft lip and palate. The following strategies can help the journey go more smoothly.

Handling Questions

Parents of a child with cleft lip and palate find themselves in a unique position of having their own questions and needing to answer questions from the child and from others. Researching and preparing responses ahead of time can go a long way toward easing stress of questions about whether a cleft lip and palate was caused by a particular action (it wasn’t) or whether it is painful (it’s not). Sites such as Cleft Palate Foundation may be a good place to begin gathering information. Families can think about how they will discuss concerns such as facial differences, scars, extra medical appointments etc with the child and other people who the child will be in contact with. Showing before and after surgery pictures can be helpful. Be prepared to answer questions about surgeries, scars, therapies, causes of cleft lip and palate, etc with concise, factual and age appropriate information.

Coordinating Care Over Time

The needs of a child with cleft lip and palate change over time. Whether for early questions about feeding, weight gain and surgery or for later questions about speech-language and hearing development, orthodontia or surgical revisions, good care coordination between providers saves families time and headaches. Review provider websites such as Shriners Hospitals for Children to determine whether multiple services may be available through the same organization. Identify teams of providers who work together routinely and will coordinate follow-up visits, procedures and plans for future care needs as the child ages. Consider talking to the individual providers about previous experiences treating a child with low incidence craniofacial needs and the frequency of those experiences. Check with the American Cleft Lip and Palate Association for teams or providers who work frequently with issues similar to the needs of your child.

Working With Early Intervention And School Programs

While some children with cleft lip and palate will not need extra accommodations, help, or therapy services, others may experience school absences related to medical appointments and surgeries, speech-language delays, hearing issues or learning needs that require coordination of early intervention and school team professionals. In addition to talking with the child’s care provider or teacher, check whether a young child is eligible for an Individual Family Service Plan or whether a school age child is eligible for a 504 plan with accommodations or an Individualized Education Plan for disabilities in areas such as hearing, speech-language, cognition, or learning. Keeping early intervention and school teams up to date on your child’s needs can help get your child the right kinds of help in a timely manner.

Navigating the myriad of services and appointments for a child with cleft lip and palate can be confusing or overwhelming. Strategies such as preparing to answer some of the inevitable questions, securing good care coordination between providers and getting help from early intervention or education agencies can help some make the journey a little less rocky.

About The Author:
Emma is a freelance writer currently living in Boston, MA. She writes most often on education and business. For cleft palette professionals, Emma recommends Shriners Hospitals for Children – Cincinnati. To see more from Emma, say hi on Twitter @EmmaSturgis2