Mastering the High School Transition with Hydrocephalus

Navigating the High School Transition with Hydrocephalus

Starting high school is a big step—new teachers, new expectations, and new opportunities. It’s an exciting time, but for students with hydrocephalus, it can also bring some unique challenges. Between managing a more demanding schedule, keeping up with medical needs, and figuring out social dynamics, the transition can feel overwhelming.

But here’s the good news: with some planning, open communication, and the right support, students and families can make this transition smooth and successful. High school is a time to build independence, develop self-advocacy skills, and create a strong foundation for the future.

Preparing for a Successful High School Transition

Reviewing Your IEP or 504 Plan Early

If you have an Individualized Education Plan (IEP) or a 504 Plan, schedule a meeting with the special education coordinator before the school year starts to review accommodations. This ensures that your needs will be met from day one.

Talk with your team about whether your plan should include accommodations such as:

• Extra time for tests or assignments
• Access to note-taking assistance
• Use of assistive technology (like speech-to-text tools)
• Preferred seating or other classroom adjustments
• Flexibility with attendance for health-related absences

Communicating with Teachers and School Staff

• Introduce yourself to teachers and your school counselor early on. Parents can help, but students should also begin practicing self-advocacy.
• Explain how hydrocephalus affects you (e.g., memory, fatigue, processing speed) and what support helps you do your best.
• Share the Hydrocephalus Association’s Teachers’ Guide for High School Students to help teachers understand your needs.

Building a Relationship with the School Nurse

• Make sure the nurse understands your medical history and knows the signs of a shunt malfunction or ETV closure.
• Provide an updated medical summary that includes:
  • Emergency contacts
  • Doctor and hospital information
  • Details on your treatment and care

Planning for Transportation and Mobility

• Request elevator access or a locker close to classrooms if fatigue or mobility is a concern.
• Ask about flexible hall passes to avoid crowded hallways during passing periods.

Managing Hydrocephalus Symptoms and Fatigue During the School Day

Listening to Your Body and Managing Energy

• Monitor your energy levels and take breaks when needed. Resting in the nurse’s office can help you recharge.
• Try to avoid stacking the most demanding classes back-to-back.

Planning Ahead for Absences and Recovery

• Set up a plan with teachers for missed work due to surgeries or appointments.
• Ask if recorded lessons, notes, or online learning tools can be available during extended absences.

Using HydroAssist® to Stay on Top of Health

• HydroAssist®, the Hydrocephalus Association’s free mobile app, helps:
  • Track your current hydrocephalus treatment.
  • Record changes to each individual treatment, including changes to your programmable shunt valve, a setting change to your anti-siphon device (ASD), or surgical revision to your shunt
  • Store images from your MRI and/or Cat scan.
  • Keep a robust symptom diary, including a headache tracker, to monitor symptoms over time.
  • And so much more!

Educating Staff on Emergency Signs

• Make sure teachers, coaches, and staff know the signs of a medical emergency: severe headache, nausea, vision changes, confusion, or imbalance.
• Wear a medical ID bracelet and consider keeping an emergency info card in your backpack.

Preparing for Substitutes and New Staff

• Keep a simple “About Me” sheet for teachers and substitutes that explains your condition, emergency protocols, and any specific needs.

Navigating Social Life and Emotional Well-Being

Making New Friends and Finding Your People

• Join clubs, student organizations, or sports (if medically cleared) to meet others and feel more connected.
• Find friends who are supportive, encouraging, and respectful of your medical needs.

Developing Self-Advocacy and Communication Skills

• Practice describing your condition in a way that feels right for you—short and simple is fine.
• Learn how to request accommodations or advocate for your needs with confidence.

Coping with Stress and Emotions

• High school can feel stressful. It’s okay to ask for help from a counselor, teacher, or trusted adult.
• Mindfulness exercises, journaling, or quiet breaks can help manage anxiety and feelings of being overwhelmed.

Connecting with Others Who Understand

• Consider joining a hydrocephalus support group—either in person or online—to connect with peers who “get it.”
• Some students may even want to educate classmates to help reduce stigma and build understanding, but that’s a personal choice.

Staying Organized and Practicing Independence

Keeping Track of Assignments and Appointments

• Use a planner, phone calendar, or school app to track homework, projects, and medical appointments.
• Color-coding subjects or using digital reminders can be a big help.

Creating a Daily Routine

• Establish consistent routines to manage energy and reduce stress.
• Break large assignments into smaller, manageable steps.

Practicing Independence in Managing Health

• Start keeping track of your own appointments or medications with support from parents.
• Use reminders, pill organizers, or apps to build self-management skills gradually. Check out our article on managing prescriptions.

Using Helpful Tools and Technology

• Explore assistive tech tools like:
  • Text-to-speech or speech-to-text apps
  • Notetaking software like OneNote or Google Keep
  • Audiobooks and accessible reading tools

Building a Strong Foundation for the Future

Exploring Career and College Options

• Work with your school counselor to explore career interests, job shadowing, or internships.
• Research post-secondary programs that offer disability support services.

Strengthening Long-Term Self-Advocacy Skills

• Learn how to schedule your own appointments and talk with doctors directly.
• Get familiar with tools and resources you’ll need in college or the workplace (e.g., disability services, ADA accommodations).
• Ask about formal transition planning at school to help prepare for life after graduation.

Parental Support Through the Transition

Parents, your role is still important—but high school is the time to encourage more independence:

• Let your teen take the lead in meetings when possible
• Practice role-playing how to talk with teachers or doctors
• Help them learn to manage their health and education with confidence

Succeeding in High School with Confidence and Support

Starting high school may feel like a big leap, but with the right preparation, students with hydrocephalus can succeed—academically, socially, and personally. By planning ahead, communicating with school staff, and building self-advocacy skills, you can set yourself up for success now and in the future.

Parents, you’ve been your child’s strongest advocate from the beginning. Now, high school is an opportunity to support them as they take on more independence.

And to the students—this is your time to grow, learn, and embrace new opportunities. You’ve got this!