Seizure Action Plan
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.
This isn’t about me though, his LGS is about him. It’s like I don’t even think about autism or not talking anymore, I just want the seizures controlled. 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.
Should you get an IEP or 504?
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.
IEP Goals Related to Epilepsy
We all would love to have more control over epilepsy. However, that’s obviously not a realistic IEP Goal.
- Recognize and Communicating seizure triggers in real time
- Recognize and communicate learning issues related to seizures (work completion, processing, etc.)
- Recognize a seizure coming on and seek assistance or safety; this is also important because it may include anxiety or embarrassment; students shouldn’t be embarrassed about seizures but often are.
- Recognize and communicate areas of need related to their epilepsy and seizures
- Manage their medication; this is an ESSENTIAL SKILL for living independently, and yes if the child receives medication at school, this is a goal that can be worked on
- Identify and make good choices related to their epilepsy; IE-not allowing themselves to get dehydrated, maintain good diet as directed by their medical team, good choices related to alcohol, etc.
- Be able to self advocate as pertains to their epilepsy–notifying a staff person of triggers present in their environment, etc.
IEP Accommodations for Epilepsy
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.
Other examples of appropriate epilepsy accommodations:
- access to water/beverage at all times to prevent dehydration
- quiet/dark/calm space for child to retreat to and regroup if necessary, or feels a seizure coming on
- designated peer/friend to walk child to nurse’s office when necessary (sibling?)
- wheelchair kept in classroom if child needs to go to nurse’s office and it’s not safe to walk
- post-seizure recovery accommodations–detail what is to be done post seizure
- plan for missed school work due to seizures
- secret hand signal or sign for when child needs assistance because they feel a seizure coming on
- WELL DEFINED seizure action plan, coming from your child’s medical team, as far as what to do in the event of a seizure
- Make sure that you revisit your child’s seizure plan annually as part of the IEP/504 process
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. 💓