Educational Strategies: Supporting Students with Down Syndrome and Leukemia in School

School-age children with Down syndrome (DS) and leukemia face a unique set of challenges that include special learning needs and long stretches away from school during treatment. 

The many side effects of treatment make it extra hard to keep up with school. These side effects range from nausea and vomiting, mouth sores, a weak immune system, extreme fatigue, and feeling downright terrible.  

Schools need to support students with Down Syndrome Associated Leukemia (DS-AL), but striking a balance between keeping up in school while undergoing treatment is difficult. 

Let’s explore how schools, hospitals, and parents can support students with DS-AL. 

Schools

The Individuals with Disabilities Education Act of 1973 (IDEA) is a federal law that mandates children with disabilities receive special education services. Most students with DS need some level of educational support. They typically qualify under the category of Intellectual Disability or Other Health Impairment. Services vary depending on the individual student. The Individualized Education Program (or Plan) lists their needs. 

Leukemia complicates the learning needs of students with DS. A leukemia diagnosis means a student with DS will need even more support whether they attend a school with their non-disabled peers or a special education school.

Educational Strategies to Support Students with DS-AL

Schools can apply the following strategies to support students with DS-AL:

• Provide homebound or hospital instruction- it's the law. 

• Use technology to stay connected – set up video teleconferencing of classes. 

• Provide a laptop or tablet for the student to participate in class from home or the hospital.

• Invite the parents or the student with DS-AL (if well enough) to give a presentation on leukemia to the class.

• Encourage classmates to stay connected. Cards, emails, and text messages are great ways for classmates and teachers to support a friend who is sick. 

Recognize that chemotherapy, radiation, or other medical procedures will majorly impact the student’s energy levels. The side effects may make learning difficult, and any scheduled home or hospital teaching sessions should be excused. 

A student with DS-AL returning to school may need extra academic accommodations. The special education team must update the Individual Education Plan (IEP) to reflect these needs. 

Schools should work with parents and healthcare providers to set up a supportive school reentry plan. The plan should include things like:

• Limitations to physical activity, including physical education class and recess

• Side effects of medication

• The need to report concerning signs and symptoms to parents: fever, headache, nausea, vomiting, dizziness, unexpected fatigue

• Presence of infectious disease or illness in the classroom

• Permission to wear a hat, scarf, or wig if the student wants to
  

Parents

Parents, you are the biggest supporter of your DS Leukemia warrior! You’ve likely been a powerful voice for your child in the medical setting. 

Apply those advocacy skills in communicating with your child’s school.

Key points to address with your child’s school

• Maintain positive and open communication to update your child’s teacher and school.

• If necessary, request a special education team meeting to revise your child’s IEP.

• Meet with the school building or district nurse to discuss ways to support your child in and out of school.

• Request that a point person be assigned to communicate with the hospital liaison (more on that follows)

Hospitals

Many hospitals have a school liaison, especially hospitals that treat childhood cancers.

The school liaison communicates directly with the school (with the parent’s permission) to: 

• explain the student's needs and support the school in meeting those needs

• arrange for home or hospital instruction

• develop a collaborative return-to-school plan

Hospital staff can support students' needs by creating a calm, quiet environment (when reasonable) during school instruction. 

Down Syndrome Leukemia Warriors

If you have DS and are battling leukemia, don’t give up! You might feel sad that you can’t go to school. You probably miss your friends. 

Here are some ideas to stay connected with your classmates when you can’t go to school:

• Write a letter to your class to tell them you miss them

• Draw a picture for the teacher to hang in the classroom

• Ask your parents and teachers to set up a time to FaceTime your classmates 

The Final Note

Dealing with leukemia is hard. Trying to keep up with school when battling DS-AL is even harder. 

Schools, hospitals, and parents can work together to support students with DS who are bravely fighting leukemia. The educational strategies in this blog may ease the burden of school stress and brighten the academic journey of students with DS-AL.