Now that summer break is over, it’s time to think about your child’s return to school. Parents of children who have had brain surgery for epilepsy might wonder, “How can I make sure my child is receiving the supports and services they are entitled to?” This may be a time of excitement, anxiety, worry, hope, or mixed feelings for you and your child.
If your child has an Individualized Education Plan (IEP) or 504 Plan, there are some things you can do now to help ensure a smooth start to the school year.
New to IEPs or need a refresher? Watch our three-part video series on how to build your child’s IEP after epilepsy surgery.
We all want reassurance that the required supports and services will be in place to help our children learn and grow this school year. There are also steps you can still take if your child did not receive all of their services or if they failed to make progress on any of their goals at any point during the pandemic.
Consider writing a letter requesting an IEP or 504 team meeting at the beginning of the school year. This is a great way to ensure that all members of your child’s IEP or 504 team are on the same page about what will be provided to your child, especially if the student will change teachers, classrooms, or schools since last year.
Did you know that you can call an IEP meeting at any time? You don’t need to wait until your child’s annual IEP meeting.
- School districts must ensure that each child with an IEP is provided a “free and appropriate public education (FAPE),” which may require the team to amend a student’s IEPs several times throughout the year to ensure that the appropriate services and supports are in place.
- If this is not possible, or in addition to this more formal meeting, it’s a good idea to set up a meeting with your child’s classroom teacher to discuss the classroom set-up and any necessary accommodations for the student’s visual, auditory, sensory, orthopedic, behavioral, social-emotional, medical, or other considerations (as outlined in their IEP or 504 Plan).
- Many parents like to provide a one-page student profile, which a substitute teacher or paraprofessional could review to get a quick but detailed view of the child’s needs throughout the school day.
- Other families and schools use communication logs to ensure good back-and-forth communication between school and home.
- Before you meet with the IEP team, share your parent concerns and any updates from summer therapies or new areas of need.
If you have concerns about your child’s needs that are not spelled out in your child’s IEP (yet!), ask yourself these questions:
Back-to-school checklist
- Set up a meeting with your child’s teacher(s) to discuss classroom set-up, accomodations, their seizure action plan, or other concerns.
- Prepare a one page student profile for the teacher, related services providers, paraprofessionals, substitute teachers, etc.
- Request an IEP meeting – in writing, always!
- Be sure to include your letter of parental concerns.
- Request any needed assessments or IEEs. (Check in with your child’s neuropsychologist about when a re-evaluation makes sense, or ask the school to provide this assessment.)
- Create a new IEP binder or spreadsheet for the year with a focus on student work and progress data.
- Pull together any new assessment reports, summer tutoring data, private therapy updates, changes in medications, or health updates and highlight recommendations from any new reports (neuropsychology, audiology, vision, literacy, etc.).
- Provide copies of any evaluations that you wish to discuss in advance, and, if possible, invite the evaluator to attend the IEP meeting – be sure to notify your school team first!
- Two weeks before the IEP meeting, ask the school to provide the draft IEP, all assessments, proposed goals, and any other data they are using to determine your child’s IEP needs and services.
- Record your IEP meeting if your state allows it – notify your school team first.
- For every “no” from the school district, they must provide Prior Written Notice (PWN). Make sure you understand PWN! ALWAYS ask for any district, local, state, or federal policy IN WRITING
- Review Seven Steps To Build Your Child’s IEP After Epilepsy Surgery
Print out all relevant Brain Recovery Project guides and organize into a binder for the teacher (such as An Introduction to Cortical Auditory Impairment After Hemispherectomy – includes impact from any surgery that removes a temporal lobe); Vision After Hemispherectomy, TPO Disconnection, and Occipital Lobectomy; Education After Hemispherectomy; and Quick guides: Strategies For Cortical Auditory Impairment After Hemispherectomy, Helpful Educational Strategies For Children With Homonymous Hemianopsia, etc.)
Resources:
- A Caregiver’s Perspective: Returning to School This Fall (UCB)
- Beginner’s Guide To Building Your Child’s IEP After Epilepsy Surgery – Part 1 (Monika Jones, The Brain Recovery Project)
- Council of Parent Attorneys and Advocates (COPAA) resources:
- COVID-19 (includes information on compensatory services, provision of FAPE, etc.)
- Make Burden Of Proof Fair and Equitable
- COVID-19 Guidance for Safe Schools and Promotion of In-Person Learning (American Academy of Pediatrics)
- COVID-19 Reference Home (National Association of School Nurses)
- COVID-19 Resources for Schools, Students, and Families (U.S. Department of Education)
- Distance Learning for Students with Significant Cognitive Disabilities (National Center for Systemic Improvement, funded by the U.S. Department of Education, Office of Special Education Programs)
- Distance Learning resources (National Center for Systemic Improvement, funded by the U.S. Department of Education, Office of Special Education Programs)
- Educating All Learners Resource Library (Educating All Learners)
- Evaluations, Eligibility, IEPs, and Placement (Center for Parent Information and Resources)
- Lessons from the Field – Providing Required Compensatory Services That Help Students with Disabilities in Response to the COVID-19 Pandemic – learn when a school district must provide compensatory services to students with disabilities who did not receive the services to which they were entitled due to the pandemic and how to do so. Slides | Recording (U.S. Department of Education’s Office for Civil Rights /OCR and Office of Special Education and Rehabilitative Services/OSERS)
- Parents: Supporting Learning During the COVID-19 Pandemic (IRIS Center, funded through a cooperative agreement with the U.S. Department of Education, Office of Special Education Programs)
- People with Certain Medical Conditions (Centers for Disease Control)
- Special Education FAQs (videos), SPAN Parent Advocacy Network
- TIES Center Distance Learning Resources (TIES Center is the national technical assistance center on inclusive practices and policies)
- Virtual Backpack – Seizure Action Plans

About the author
Audrey Vernick is the Director of Patient and Family Advocacy for The Brain Recovery Project. She is the parent of a child who had hemispherectomy for seizures caused by stroke. Ms. Vernick holds a level 2 certification in Special Education Advocacy Training from the Council of Parent Attorneys and Advocates and is certified by The ARC in future planning. She represents The Brain Recovery Project in the Rare Epilepsy Network‘s Adult Transition Taskforce and serves on the Youth Advisory Council for HOBSCOTCH (HOme Based Self-management and COgnitive Training CHanges lives), a behavioral program designed to address memory and attention problems for people who have epilepsy.