How is Your Child Managing a Chronic Illness in School?



Parents worry when they send their children off to school for the first time. Will the teacher be helpful and understanding of any unique abilities and/or difficulties the child may have? Will the child be accepted by the other children? Will the child adjust to the new people, chairs, bathrooms, lines for the water fountain and acceptable behaviors that are part of school life?

Now, imagine sending off a child with a chronic illness such as asthma, allergies, diabetes or epilepsy (also known as seizure disorders) to this new and unknown place.

Your worries have just magnified 50 times.

Responding to the needs of children with chronic illness at school requires the family, the school district, the school, the teacher, the school nurse and the student to make a coordinated effort. All six parties can create a support system that ensures the child will function to his or her maximum potential. This includes acceptance by peers, reduced isolation, better attendance, improved alertness and physical stamina, fewer symptoms, fewer restrictions while participating in physical and social activities, and fewer medical emergencies.

For parents of a child with a chronic illness: Communication is key. Providing the school with information, medication schedules, meeting and planning times will set a cooperative tone. Notifying the school of your child's health care needs, and providing a written description of these needs including authorizations to administer medication to your child and emergency treatment plans signed by your health care provider are positive approaches that will go a long way in easing your concerns.

For the school district: The development of district-wide guidelines and protocols applicable to children with chronic illnesses must be in place. These should include safety issues, confidentiality, staff training to eliminate stigma and promote appropriate care, compliance monitoring, and district meetings with parents, school personnel and health care providers. This will help create the kind of inclusive attitude that children and families require.

For the school: The responsibilities to children with chronic illness involve legal, educational and strategic issues. These include the identification of children with chronic conditions, knowledge of the ADA (Americans with Disabilities Act) and IDEA (Individuals with Disabilities Education Act), and meetings to discuss accommodations and aids, and the development of an Individualized Education Plan (IEP).

The identification and coordination of school staff to provide education and communication to the child, the parents, and all district personnel is vital. Strategies that reduce disruption during the day, both for the school as well as the child, and ensure competent management of medications, emergencies, safety, confidentiality and a supportive learning environment will earmark the school as a healthy and safe place to learn and grow.

For the educator: The responsibility of the teacher is to understand that a chronic illness need not stand in the way of an education, nor should it affect the quality of education a student receives. Expectations for these special children do not need to be lowered.

Relevant knowledge about the child's illness, an attitude of awareness and sensitivity, a recognition of their significant role and an understanding of the educational issues associated with a particular chronic illness such as medication side effects, missed instruction time, memory, attention, and perception will enhance the teacher's ability to foster success.

For the school nurse: He or she may be the first to recognize symptoms of a chronic illness. Once diagnosed, the school nurse often has the responsibility of dispensing medication during the school day, and may be in the best position to explain a diagnosis to other students and school personnel, prevent unwarranted restrictions and even to guide the child to accept her role in the management of her own health.

For the student: The child needs to be taught to notify an adult about symptoms he may be experiencing during the school day and to talk to the teacher or identified school personnel about his concerns and needs. He also needs to participate in his care and management as much as his health and age permit.

Recognizing and acknowledging his competency in self-management will go far in promoting his self-esteem and ensure his highest level of functioning. His ability to share his experiences with classmates and teachers will help everyone to better understand his condition and support his efforts.

Article courtesy of the Epilepsy Foundation of Southern New York. For information about epilepsy, comprehensive services for persons of all ages with disabilities, or to request a seizure recognition and first aid training for your school, call 800-640-0371 or 845-627-0627.