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-like behaviors 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 afterwards. 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. And, for the most part, 2017 has been pretty good for him. We were 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.
So today I made the appointment to do the consult for the corpus callosotomy. Yeah, where they basically go in and slice your brain so that the two sides cannot communicate, therefore a seizure won’t happen. Not all seizures, this just prevents some kinds. But he’s approaching puberty when it will likely worsen, so best to get it done now. And, before we lose health insurance due to our stupid Congress.
And so, as I go through this process, since we’ve been managing seizures for a few years, I thought I’d share some resources for those who are newer to this, or are having some struggles.
Safety and his seizure plan in his IEP, and that it gets followed, is probably what is most important to me. Yeah sure, I want him to make progress, but when you are dealing with a difficult seizure disorder, seizures are almost always at the top of your priority list.
Why reinvent the wheel? There’s no need for us to create more or new seizure plans when so many online resources already have them.
- Seizure Action Plan from the Epilepsy Foundation
- My Seizure Plan from Epilepsy.com
- Printable Seizure Action Plans from Epilepsy Chicago
- Seizure Action Plan for School from ppmd
- 4 Seizure Disorder Nursing Care Plans
Seizure Action Plan from End Epilepsy
- Seizure Action Plan from Dartmouth
They’re all fairly similar but you might just see one little detail that would otherwise be overlooked.
Make sure that you revisit your child’s seizure plan annually as part of the IEP/504 process.
You may also want to read: