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How Do I Inform My Child’s Teachers and Classmates About Ichthyosis?

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It is difficult for a child to concentrate on learning when the skin is taut, cracked, sore, or itching. Some symptoms of ichthyosis can make simple activities such as holding a pencil, running and playing, or sometimes even sitting still difficult, if not painful.   That’s why it’s so important to make certain your child is entering a school environment that it is aware and informed, ensuring that school officials and classmates are prepared for any special circumstances they may encounter. The steps below will help to guide a, sometimes, challenging conversation for  parents, teachers and students. 

Parent-Teacher Meeting

Parents and teachers might find it helpful to convene a conference prior to beginning a new school or school year.  The conference could include parents, school nurse, principal and other appropriate staff such as counselor or physical education instructor. If possible, the child’s physician should also be involved. This will provide a forum for ensuring a well-integrated approach to support the child’s special needs in school.  Principals can help by making sure the larger school community is aware of the child’s condition and special needs, so that crossing guards, substitute teachers, and lunchroom workers do not inadvertently contribute to a child’s emotional and physical discomfort.

Informing Classmates

The second goal is easing the child’s transition into the society of his or her classmates. Since ichthyosis is usually quite visible, and may even be considered “disfiguring,” the child’s classmates need to have their natural curiosity satisfied. This can be handled in any number of ways. For instance, parents are sometimes available the first day of class to answer questions from students and faculty.  Also, although the student with ichthyosis probably has a ready response to queries about his or her skin, a teacher could  be instrumental in supplying words or phrases to better explain their different appearance. 

Other common strategies include statements written by parents to teachers that introduce their child as a singer, skater, pianist, etc., who happens to have ichthyosis. Letters may even be distributed around the school, and perhaps even to parents of the child’s classmates, particularly in the younger grades. 

It is critical to consider the age of the children and not to draw undue attention upon the child who looks different.   A common question that parents often struggle with is “Do we allow our child to be present during the ichthyosis discussion with the classroom?”  There are many benefits for both the child and classmates when they are present during the discussion.  The child is able to actively engage in the discussion and hear what is being said regarding their skin disease.  It also serves as an opportunity for self-expression that is in a safe and controlled environment.

 It is important that classmates understand ichthyosis as best they can. Generally, a straightforward, direct approach is best. The ridicule, isolation and depression so common for children with ichthyosis is only heightened by the ignorance that grows out of evading the issue altogether.

More Resources for Teachers & School Personnel

Last but not least, provide them with the Guide to Ichthyosis for Teachers and School Personnel booklet. The information serves as a quick and handy resource for teachers, and can offer  “peace of mind” for parents as they send their little ones off to school.

 


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