Behavior & Sensory Support

What you need to know   

Like many children and families, those living with CF typically are resilient in the face of numerous challenges.

• Children with CF usually want to participate in school life as much as possible along with their peers.
• However, it is helpful when school personnel have an understanding of the stress and demands associated with a complex chronic health condition and are as supportive as possible.
  • For example, the child and family may need to invest a great deal of time and energy every day just to manage the condition.
    • Examples of issues: medications, airway clearance therapies, nutritional needs, health care coordination, medical appointments, hospitalizations, etc.

Children may experience anxiety, depression and pain or discomfort (e.g., deep, chronic cough; gas and stomach pain) related to CF.

• Some worry that peers or teachers will perceive them as “different.” They may try hard to fit in like everyone else. 
  • Pre-teens or teens may skip their digestive enzymes and risk stomach pain rather than take pills in front of their friends during lunch.  

What you can do 

• Have a clear understanding of the need for any behavioral and sensory supports
• Whether through an IEP, Section 504 Plan and/or emergency plan, work with the team to ensure that the child has the interventions and accommodations needed for school success.
• Ensure that everyone who comes in contact with the child (including bus drivers, cafeteria staff and monitors, substitute teachers, faculty and administrators, coaches, specialists, etc.) understands and supports his/her accommodations.
• Discuss with the team how they prefer to address the issue of informing classmates about their health condition.
  • Young children may want to share some information
    •  Such as why they need to take pills when they eat
    • Or the need to stay inside during recess on a very hot day 
  • Older children often are very private about the condition and prefer not to tell others.