What to do before your child enters school…

• Educate your child about their skin condition
• Contact your child’s school the year before they enter so they can be prepared to handle your child (educate staff, medical plan, AC in classrooms, etc.)
• Early Intervention services will assist with any developmental delays present

Daycare/Nursery/Preschool

• Send home notes to other parents in class/school to educate them about ichthyosis
• Ask to speak to parents at Back-to-School Night or orientation about ichthyosis; this will alleviate any questions/concerns they may have (Is it contagious?  Were they in a fire?)  etc.
• If child is old enough, allow them to talk to classmates about ichthyosis.  Children will wonder why child has lotion on each day.  Simple answers will satisfy young ones
• Ask about outdoor playtime-is there a shaded area?  If too hot, where will your child go?  Are all classrooms air conditioned? 

Elementary School

• Bring your child to visit new school and staff before the year starts
• Discuss child’s special needs with principal, nurse, teacher and psychologist
• Educate your child’s class about ichthyosis-who will do this?  Parent, teacher, child, psychologist?
• Provide school with copy of FIRST’s publication Ichthyosis: A Guide for Teachers
• 504 Plan is a good idea

• Lists specifics about your child’s medical needs
• What is done when child gets too hot for gym? (frequent breaks, sunglasses, hats, cooling vest, etc.)
• He/she may bring a water bottle to all classes
• Hat allowed in school due to loss of hair
• Recess?
• Child must report to nurse to apply creams/lotions whenever necessary (who will apply them-child or nurse?)
• Air conditioners/fans must be in classrooms
• Special transportation if necessary

• IEP

• Necessary if your child requires special accommodations for educational reasons
• OT/PT/Speech

• School trips/Activities

• Distance of trip?  Bus too hot?  Lotions on trip?  Chaperoned by??
• Field Day-how can my child participate without overheating? 
• Graduation/Moving-up ceremonies-location?  AC? 

Middle School

• Transitioning to new school
• Meet with new principal and nurse to discuss and educate
• Meet/email teachers; communication is key
• New children may enter from other schools-don’t know about ichthyosis
• Children change classes- will all rooms have AC?
• Self-esteem issues arise due to peer pressure
• 504 Plan/IEP continue-might have to add to plan
• Seek professional help for your child if needed
• Middle School is tough for everyone, but ichthyosis adds to it
• Trips/Activities
• Encourage child to join clubs; get involved
• Rough years

High School

• Transitioning to new school
• Meet with new principal and nurse to discuss and educate
• Meet/E-mail teachers; communication is key
• Encourage child to join clubs; get involved
• By now, most children are sure of who they are and it is easier to be “one of the group”
• 504 Plan/IEP continue-might have to add to plan
• Trips/Activities

Other

• Stay involved (volunteer, class parent, etc.)
• Talk to your child, discuss their day, ask how others react to them
• Point out your child’s strengths
• Be prepared for rough days!  You will hear: I hate my skin!  This is YOUR fault!  I don’t like what I look like!  I want normal skin! etc.
• Talk to others who have already walked in your shoes
• Contact FIRST for resources to help (DVDs, publications)

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