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Child with Cystic Fibrosis in Classroom at School

Preparing Children with Chronic Conditions for the School Year

The beginning of the school year is an exciting time for families, but having a child with a chronic condition that requires special accommodations can add an additional layer of stress. Here are some tips that can help you and your child kick off the school year right!

1. Communication is Key

Identify a list of contacts and open the lines of communication at your child’s school. In addition to gathering information on teachers’ policies that would affect your child, you can also work with the school to determine if an individualized education program (IEP) is necessary. An IEP, or a 504 Education Plan, is for students who are determined to be eligible by a multidisciplinary team. The IEP allows instruction and education services to be modified and accommodations to be made based on your child’s individual needs. It identifies specific measurable and objective goals for your child to achieve throughout the school year.

Have in-depth conversations before school begins with your child. For example, children with Cystic Fibrosis may ask why other children don’t complete the same treatments that they do, or why their friends or school staff ask them so many questions about their disease. Your child will feel empowered to share with others how their therapy helps them stay healthy.

2. Social Stories

Social stories were developed for higher-functioning children with Autism, but other children with chronic conditions can benefit from them as well. “Social Stories are a social learning tool that supports the safe and meaningful exchange of information between parents, professionals, and people with autism of all ages,” shares Carol Gray, the developer of Social Stories. This allows the parent to gather information about their child’s back to school experience and present that information in a way that resonates with the child and teaches them what their expectations will be. These stories include a high level of detail about the setting, things that typically happen in that setting, and the actions or behavior that is expected of the child in that setting. These descriptions will allow children to ask thoughtful questions and fully understand what their experience in their school setting will look like.  

3. Visit your child’s school

Visit the classroom before the school year with your child and meet with the teacher to discuss any special accommodations that need to be made due to your child’s chronic condition.

Discuss your child’s specific schedule and communicate expectations, such as needing to have a water bottle or tissues with your child, to help teachers better understand your child’s unique needs.  Include teachers, nurses, and coaches on this communication to facilitate a seamless experience. If your child is at a higher risk of infection and illness due to a chronic condition, ask teachers to share with you if there are any viruses going around the classroom, to allow you to take appropriate preventative measures.

Ensure that after the meeting, all requests for accommodations or additional services are documented in writing and dated. Keep a copy of all communications for your own records. Meet with the nurse or other school administrators to discuss medications that would need to be administered during school hours or food allergies. Children who are older and are more responsible may be allowed an exception to carry their prescriptions with them, which means less nurse visits and time away from friends. 

4. Talk to your Child’s Physician

Talk to your doctor to see if there are limitations that could affect your child’s school performance. Ask them if your child would qualify for any specialized therapy to help them, like speech therapy, occupational therapy, physical therapy, or a psychologist. 

5. Celebrate!

Lastly, celebrate accomplishments! Things that are simple for other children may take a lot of planning and coordination for your family.  Celebrate your child’s ability to adapt to this new, complex environment!