6 Back-to-School Tips for Parents of Kids with Chronic Illnesses

 In Adapting to Special Needs, Education, Parent Resources

1 in 4 children in the U.S. has been diagnosed with a chronic illness. As we send kids back to school this month, we have a few back-to-school tips to help you make sure that your children and their education team have the tools they need for success.  While a child with asthma may have different needs than a child with cancer or cystic fibrosis, there are a few key principles that will be helpful to keep in mind.

6 back-to-school tips for parents of kids with chronic illnesses

 


1. Understanding How Chronic Illness Affects Kids at School

Back-to-school tips for kids impacted by chronic illness involve supporting kids individual needs, but first, it may be helpful to understand the challenges faced by chronically ill children at school.  Knowing these common challenges helps parents and educators to identify and recognize potential stressors for kids.

  • Students may be required to miss a lot of school due to hospital visits, treatments, recovery time, or medical appointments.
  • Students may experience difficulty completing work or taking exams.
  • Students may experience decreased academic performance.
  • Students may have a harder time maintaining relationships with friends, making new friends, or participating in extracurricular activities.
  • Students may require extra assistance within the school environment, or getting around the school.
  • Students may not be able to participate in certain classes or activities as their same-age peers due to doctor’s orders.
  • Students may feel isolated and left out of mainstream activities or experience lower self-esteem.

 


2. How to Support Kids with Chronic Illnesses at School

Parents of kids with chronic illnesses (or child guardians) should work with the child’s school maintain communication and cooperation. Your child’s education team needs to know what is needed to support your child. It is best to talk to your child’s doctors about how best to communicate with the school and what information you should share. Both the family and the child’s school should be clear about expectations.

Here are a few things to remember: 

  • Talk to your child’s doctor about what information to share with a child’s education team.
  • Develop a care plan so that expectations are clear and a plan is set in place to support your child’s specific needs.
  • Maintain communication about relevant changes to your child’s plan, condition, and academic needs.
  • Request changes or meetings with your child’s school as necessary.
  • Seek additional support if needed.

 


3. Creating a Care Plan for Your Child at School

A care plan for your child at school should be developed with your child’s doctor and will include written instructions from your child’s doctor with clear, actionable steps to help manage your child’s condition. This plan can be shared with the school principal. The plan should be easily accessible to and reviewed by relevant staff and reviewed if there are changes to a child’s condition, treatment, or specific needs.

A Care Plan May Include:

  • What medicines are taken and when
  • Any side-effects a child may experience
  • How to avoid triggers
  • What to do in the event of an emergency
  • How to recognize and manage symptoms as they occur
  • Steps to prevent and treat symptoms if they occur

 


4. What to Do if a Child Misses School Due to Chronic Illness

If your child’s condition causes them to miss a lot of school days, it can produce stress for your child. Being in communication with the school about missed school days is important so you can work with your child’s education team to reduce the impact on their academic work and activities.

Here are some things to keep in mind:

  • Request that academic work be sent to be completed at home
  • Request a main contact for communicating information about missed school and requesting schoolwork.
  • Notify your established contact in a timely manner about planned or unplanned absences.

 


5. Know Your Options: Education Support for Kids with Chronic Illnesses

Under federal law, kids with chronic or life-threatening illness and/or disabilities are entitled to educational support, and your child might qualify for free services under the Individuals with Disabilities Education Act (IDEA).

IEPs: Some children who miss a lot of school due to illness may have Individualized Education Programs (IEPs) that include customized goals and learning strategies created by the teachers, specialists, and counselors. IEPs take a child’s individual academic needs into account. Children who qualify for an IEP receive one at no cost, and also receive free support services. You can read about a parent’s journey with Individualized Education Programs here.

504 Plans: Your child may be entitled to a 504 Plan, which specifies physical accommodations necessary for your child at school. These plans prevent discrimination and protect the rights of kids with disabilities in school. A 504 Plan can be requested by a parent, legal guardian, teacher, physician, or therapist.

 


6. Communicate with Your Child About Things That Effect Them

Sharing Information: Kids with chronic illnesses may struggle with not being in control of their situation. When sharing information about your child’s condition, be sure to talk about this with your child and include them in the process as appropriate so they can share their feelings, preferences, and experiences.

Social Activities and Friendships: Illness, doctors appointments, and treatments often interfere with a child’s routines and activities. For children and teens with chronic health conditions, this can lead to fewer friendships and less social activity. Keeping kids involved with their peers and making extra efforts to maintain and make new friendships can help gives kids the support systems they need to better cope with their illness.

Planning for Treatments to Reduce Stress: Stress will be easier to cope with when planning is involved and procedures are anticipated. Doctors appointments, tests, and procedures can cause physical and emotional stress. Some children may need days to prepare, and others may experience too much anxiety. Keeping open communication with your child will help you figure out what your child needs.

Offering Options: Some things will need to be done regardless of the situation, but others may be flexible. Understanding what tasks are critical (ie. medications and doctors visits), and which are flexible will help a child cope and feel a sense of autonomy and self-confidence.

These back-to-school tips will help parents and guardians support kids with chronic health conditions during the school year, and aid in communication with your child’s school. Back-to-School time can be very exciting for kids, but a child with chronic illness may require more support in reducing stress surrounding managing and treating their illness during this time. Find tips for recognizing and reducing stress in kids here.

 



Have back-to-school tips for parents of kids with chronic illnesses you’d like to share? We’d love to hear from you. Please share your experience in the comments!

Back-to-School Tips: “The more certain kids are that someone’s got their back, the more confident and autonomous they can be.” – Melinda Wenner Moyer

 


MAKING A DIFFERENCE FOR FAMILIES IMPACTED BY CHILDHOOD CHRONIC ILLNESS

10 Local Resources for Parents of Kids with Chronic Illnesses in Los Angeles | CoachArtSince 2001, CoachArt has matched volunteer coaches with students for one-on-one or group lessons in arts and athletics. Our vision is that one day every family impacted by chronic illness will be connected to a community of support and an opportunity to learn and grow together.

CoachArt offers free art and athletic lessons to chronically ill children and their siblings between the ages of 5-18 in Los Angeles, the San Francisco Bay Area, and San Diego. If your child has been diagnosed with a chronic condition, we invite you to fill out a student eligibility form or get in touch to learn if CoachArt is right for your child.

WAYS TO HELP

Do you have an artistic or athletic skill you would like to share with a child impacted by chronic illness? Become a CoachArt Volunteer.

Learn how you can get involved with CoachArt to help kids impacted by chronic illness. Visit coachart.org/get-involved.

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