I could handle the not talking. I could handle the stimming. I could handle the developmental delays. And the picky eating, and the clumsiness due to poor motor planning, and the meltdowns.
But seizures might break me. I have PTSD from watching him have so many seizures. When he has a bad fall from one, I will see it and hear it, over and over, in my brain, for weeks afterward. Wherever I am, even when he’s not with me if I hear a loud crash or bang or someone falling…I practically jump out of my skin.
See also: IEP goals for Epilepsy
This isn’t about me though, his LGS is about him. Sometimes we’re coasting along, seemingly doing well on his current meds and then BOOM! On Friday he had another bad fall, the first in months.
When he has a drop seizure and falls, it’s like that scene in Rocky where Rocky Balboa gets hit, and he just falls straight down, with his arms at his sides. That’s exactly what Kevin does. Seizures are one of the most difficult and dangerous health conditions to manage. It’s essential that IEP teams make this a priority.
Disclaimer: I am not a doctor nor do I play one on the internet. Two reputable sources for epilepsy information are the Epilepsy Foundation and the Brain Recovery Project. I am on the Parent Advisory Committee for the Epilepsy Foundation, however all opinions expressed here are my own and should not be interpreted as advice from EF or any other entity.
Is a 504 Plan for Epilepsy enough?
In many situations, a 504 plan is appropriate. Remember that a 504 plan is only for accommodations. However, there are lots of students out there who have milder cases of epilepsy, experience only occasional seizures and their learning is not disrupted.
But, seizures are very hard on the brain. We know that seizures affect everything from cognition to quality of sleep. Epilepsy also intensifies symptoms and behaviors associated with anxiety, autism and other comorbidities. All of this can and will affect a child’s ability to ‘access and benefit from’ their education.
The accommodations put in place for epilepsy will vary based on the child’s needs. As most parents know, the rescue meds for seizures are controlled substances. This will require extra attention on an IEP. If a child needs a replacement of a rescue med at school, make sure you have clear, documented communication regarding this.
In the past, I have sent up diazepam in my son’s backpack. I no longer feel comfortable doing this and make the extra trip if it has to be replaced (it’s 40 minutes away). But with zero tolerance polices in place at many schools, you want to cover all the bases to prevent unwarranted disciplinary action.
Should Your Child have an IEP or 504 for this?
My answer is the same for most disabilities. It depends on the child.
I get it–you were hoping for something more concrete. But, with the exception of dyslexia (which in my opinion always needs an IEP to teach the child to read), most other disabilities will vary based on the child. Fact is, all disabilities are a spectrum, not just autism.
A critical part of understanding eligibility is the difference between adversely impacts and substantially limits. These terms define the thresholds for qualifying under IDEA (for an IEP) versus Section 504.
Under IDEA, a child qualifies for an IEP if their disability adversely impacts their educational performance and they require specialized instruction to access the curriculum. Adversely impacts means the disability significantly affects academic or functional performance, often in ways that are measurable through standardized testing or other assessments. This is a stricter standard compared to Section 504.
For a 504 plan, the standard is whether the disability substantially limits a major life activity. Substantially limits is intentionally broad and can include conditions that may not directly impact academic performance but still create significant challenges. For example, a child with ADHD may perform well academically but struggle with concentrating or sitting still for extended periods. This distinction allows for more inclusive eligibility under Section 504.
Epilepsy Accommodations
Here’s a list of 25 accommodations for epilepsy and seizures that can be included in an IEP or 504 Plan. And a 504 plan for school or for college.
Health and Safety
- Access to water/beverage at all times to prevent dehydration.
- Quiet/dark/calm space for the child to retreat to and regroup if they feel a seizure coming on or to recover post-seizure.
- Well-defined seizure action plan created by the child’s medical team, specifying actions for staff during and after a seizure.
- Revisit the seizure plan annually as part of the IEP/504 process to ensure it remains up-to-date.
- Training for staff on recognizing seizure types, proper responses, and when to call emergency services.
- Immediate access to the nurse’s office or medical personnel when a seizure occurs.
- Wheelchair or other mobility aid kept in the classroom for safe transport if walking is not possible or safe post-seizure.
- Emergency medications (if applicable) stored in an accessible, but secure, location with trained staff available to administer them.
Communication and Support
- Designated peer or friend to walk the child to the nurse’s office or calm space as needed (e.g., a sibling if in the same school).
- Secret hand signal or sign the child can use to discreetly alert staff when they feel a seizure coming on.
- Staff communication protocol to alert parents/guardians after a seizure or concerning behavior.
- Privacy considerations to ensure the child is not unnecessarily embarrassed or stigmatized.
Academic and Attendance
- Plan for missed schoolwork due to seizures, including makeup timelines, tutoring, or reduced workload as needed.
- Permission to leave the classroom without penalty when they feel a seizure or other health issue coming on.
- Flexible scheduling for tests or assignments during recovery periods.
- Extra time on assignments and tests to account for slower cognitive processing post-seizure.
- Provision of classroom notes or access to a note-taker to help the child stay on track during absences or recovery.
Physical and Environmental
- Non-restrictive seating arrangements near a door or other safe exit for quick access to help if necessary.
- Accommodations for physical education to ensure the child’s safety during activity while encouraging participation when possible.
- Modified lighting (e.g., no flickering lights or access to dimmer switches) to prevent seizure triggers.
- Access to headphones or noise-canceling tools for sensory overload or recovery periods.
Social and Emotional
- Social-emotional support through a counselor or psychologist to address anxiety, bullying, or self-esteem issues related to their condition.
- Education for peers (when appropriate) about epilepsy to foster understanding and reduce stigma.
- Post-seizure recovery accommodations, such as rest time, adjusted workload, or permission to go home if needed.
- Buddy system for field trips or other off-campus activities to ensure the child’s safety in less familiar environments.
School Training on Seizures
As an accommodation or as part of IEP team or parent training, you can include seizure and epilepsy training. In many regions, the Epilepsy Foundation will provide trainers to come in and do this at no charge. Or, the school nurse can often provide training to the teachers and even the class. Another option is to find videos online of this training.
Creating understanding is essential to breaking down stigmas around seizures and epilepsy. Students are often afraid when they see a classmate having a seizure and this can eliminate that. Allow students to ask questions in a safe space to foster understanding.
Explain to students what is inappropriate and hurtful language and gestures.
Seizure Plan and Transportation
This is one area that I’ve had to learn the hard way or through trial and error. Over the past 6 years, at least 2-3 times, there have been mornings when I’ve put Kevin on the van, walked back toward my front door, and the van driver began laying on the horn. “Something’s wrong!”
And that’s when I learned that they were unaware that Kevin has seizures, and what to do.
So look, I get it. It’s in his IEP and this is an example of the IEP not being followed. The van team was not told about the seizures or the seizure plan. But, this is what I do now. I keep a one-page document just about the seizures in our kitchen junk drawer. If the van arrives with substitute or new driver and aide, I take it out and give it to them.
Is it my responsibility to do this? No, it’s the LEA’s responsibility. But hey, let’s just fix the problem, right?
This should be enough to get you started on developing solid content to be added to an IEP for seizures. The two organizations I listed above are also great resources.
Now, indulge me for one moment….and let me get on my soapbox, and tell you a hard lesson I learned. Because my son is intellectually disabled, society sets a very low bar for him.
As we were navigating the epilepsy world, doctor after doctor after doctor examined him, looked at his data, then shrugged and said “Well, he’s always going to have a lot of seizures.”
That wasn’t acceptable to me, and it shouldn’t be acceptable to anyone. It took me years of driving up and down the East Coast, but I have found a few practitioners for whom this was not acceptable either. Two brain surgeries, lots of medication changes and a few years later, his daytime seizures are 99% gone.
All this to say, if the answer isn’t acceptable to you, keep going. We shouldn’t have to advocate for our kids this much, in school or at doctors. But we do. You wouldn’t settle for a crappy IEP team, don’t settle for a medical team that doesn’t believe that things can be better or is not willing to try. 💓
