Butterflies: The Children of Ichthyosis
Using the Video in Classrooms and Community
This video serves as a brief introduction to a group of genetic skin disorders called ichthyosis. It is highly recommended that the booklet Ichthyosis: A Teachers Guide be read before using this video in the classroom. This video is a brief and general introduction to these disorders and goes over some important information that is meant to promote acceptance and understanding of people affected by some form of Ichthyosis. Following are some presentation ideas to go along with the video and the handbook..
- This video should be presented by a parent or other adult who is familiar with ichthyosis and is able to answer questions and sponsor discussion after the video.
- Ideally, before a new school year begins, all teachers and staff, including the school nurse and counselors should have an opportunity to review and discuss the video and booklet. The video is short and may be a welcome addition to a staff meeting. Informed teachers and staff will be better able to deal with questions and comments from students in other classes. It is also true that in most schools even young children may have different teachers for gym class, music, PE, computer lab, library, etc.
- In the classroom of a child with ichthyosis, introduction of the video by a parent or other adult familiar with ichthyosis can help provide the affected child with a model for dealing with questions and demonstrate to the class that it’s okay to discuss these topics.
- The video can be useful tool in educating children who attend the same school as a child with ichthyosis, but are in different classes and grade levels. Understanding can promote positive interaction during less supervised times on the playground and before and after school, thus reducing negative comments and actions.
PRESCHOOL - EARLY ELEMENTARY Important issues are contagion (Ichthyosis is not contagious), differences in appearance, curiosity in general. Activities: There is a good bibliography in the Teacher’s manual. Reading out loud may inspire discussion. Class can make chart of colors of skin, hair and eyes. Discuss the purpose and function of skin in general and how it protects you. Look at skin on animals, fruit, and vegetables. Make hand and footprints. Looking at physical traits that make each of us look different from one another (being careful that one trait is not portrayed as being better than another). Younger children often point and make comments about people who are different in any way. Discuss that it is good to be curious and to try to learn about others, but that there is a polite way to do it. This is fun for children to practice.
SCHOOL AGE Peers and acceptance become very important. Kids don’t want to be singled out or seen as different. Activities that show that everyone is different and similar may be helpful - special sensitivity is important in these activities. The video can be show as an example of how learning more about others helps us to better understand them. Discussing a range of differences and general manners and principles can take some of the embarrassment of being singled out for a child. Simple genetics can be introduced using eye color of parents and kids. Kids can discuss illnesses that they know of and categorize them into what is contagious and what is not. The video can be incorporated into a general discussion about the functions and importance of skin. Discussion of skin can be expanded to talking about preventing sunburn, the process of sweating, goose bumps, and how the skin tans. All children in this age group can benefit from social skills training and role-playing of how to handle teasing, standing up for themselves, etc. Discuss what being a friend means and how we treat friends.