My son has epilepsy
This is a real thing
- •Most of the time we are fortunateAnd have a group of teachers that are receptive and understand and remember his limits. He has what are called abscence seizures
- •Aptly namedFor the fact that there is an absence of symptoms. He could be talking to you and you wouldn't know he's having a spell, except for the fact that he would be silent, unresponsive. He could be walking down the stairs or riding a bike and his body would continue moving. There would be little to no evidence until he is clearly in harms way and unreceptive to warnings. Almost like sleep walking yet fully awake.
- •It isn't made up or imaginedYou'd be amazed how ignorant people are about it. How often I have heard he will "grow out of it". He won't. He has a lesion in his brain that means it will always be with him unless he has brain surgery that may or may not work (so I've opted no on that!)
- •What I understandIs that it is difficult for people to discern when it is happening. And that no teacher wants any student to immediately use that as a crutch or excuse. Dylan often doesn't speak of it, when a teacher forgets an accommodation he is the first one to let it slide. He doesn't ask for the extra time given to him to complete work. He wishes he could swim or ride his bike alone. What I'm saying is, he doesn't make excuses.
- •What I wishIs that when a teacher tells him "I told you (whatever it is that they told him)" and his response is "oh, I don't remember hearing that" (which is his way of saying, gently, maybe I had a seizure) that his educators would have that alarm go off in their mind. I have sent emails, had meetings, sent reminders to let them know this is his preferred way of saying "maybe I had a seizure"
- •I try not to beThe kind of parent I, as an educator, would complain about. I let him check his own grades, fight his own battles, ask his own questions. But when a kid has asked you and your answer is "I told you so you can't make up that assignment now" and he is too embarrassed to ask again and say "maybe I had a seizure..." I have to become THAT parent
- •I have to rememberTo keep my emotions in check. To remember how difficult it is when you have so many students. To try and voice it in a way that doesn't imply blame or make them feel like I am doubting their abilities. How I wish I was talked to. That for the most part, teachers have been great about it. The people I most often have to remind are his peers (I get it is a lot for a twelve year old to remember) and the coaches (I don't know why)
- •And I have to hopeThat this will be one of the last emails like this I have to send. That he gets more comfortable saying "seizure". That teachers will look at this straight a kid who has never been in any kind of trouble at school and think...maybe there's a reason. Oh yeah, that's right. I have paperwork documenting the possible reason.
- •That tomorrow will be betterEpilepsy is fair weather one min, dark and rainy the next. It's the main reason I'm no longer in one classroom, because I have to have flexibility to leave when needed. And for the most part we are okay and surrounded with support. Just not at this particular moment, when I'm feeling frustrated and discouraged. But this too, shall pass.