Epilepsy (Parent) With Kids?

[XxBlaqkxX]

How many of you go through the motions of raising kids with epilepsy?

Spoiler

When I first had my children, my epilepsy was under control and had been for 5 years with my first child and 8 years by the time I had my second. There were times I nearly forgot I had epilepsy, but I didn't forget after having to taken medication that does who-knows-what to my body, although it passed and I got on with my day. I ended up doing okay in the hospital with both of my kids, no seizures at least, and no seizures during pregnancy, but of course I had taken Keppra for like 10 years total and everything was under control.

After getting COVID, it kind of snowballed me. I was able to come off the medication per neurologist permission and I followed their recommendations on how to be safe while doing so. I got a 15 month break. I wasn't afraid to go to bed and have a seizure. I wasn't afraid to wake up and have a seizure lasting all day long. Then, I thought I was getting a cold, some sniffles here and there and a stuffy head. It was no big deal at the time and then one day soon after, I wasn't right. That ended in a whole ordeal in the hospital. It took staff 3 hours to stabilize me and wonder if I'd wake up.

I was sent home with some Keppra, but it wasn't the dosage I normally took. They gave me a higher than normal dosage because of the issues so I took it as directed, but it was only a months supply. I was so out of it and then realized I was out with no refills. I had some leftover Keppra that was still good and started taking it as normal. I knew I had to get back in to see my neurologist, but the wait was 6 months. I had a lot of problems with kind of blanking out when someone talked to me - not sure they were talking to me, wasn't sure what they said, and I felt jumbled in my mind. I'd apologize and then respond to their question, but excused myself to go and rest. I believe it was 8 months later I had another one. My husband noticed I was sleeping quite a bit in a back room, we have a swamp cooler so it doesn't really reach back there, and realized I was overheating. He tried to get me up, but the eyes kept rolling back in my head type of thing and all I wanted to do was sleep. He figured he'd get to the McDonald's drive thru to get me some Powerade. Well, I had a seizure in the passengers seat and all eyes staring with the kids sitting in the back and him trying to brave the drive thru line and keeping me from hurting myself.

When he was able to get out of the line, he took me straight to the hospital. I eventually got into a neurologist, and I've been trying out the extended release, but there are certain points I'm having some more mild issues, but not full on seizures - but definitely auras at times.

What I can't stand is sometimes how they take advantage. I know, children test their boundaries and I do my best to adapt. But seriously, what do you do when your own kids take advantage of your occasional memory difficulties? Perhaps it's some ice cream missing out of the carton and I was sure I didn't have any and sure no on else had any and ask my oldest about it and she might say, "No, I didn't, Mom! You probably had some, though, didn't you?" Kind of deal and once in a while I second guess myself. After all, I hate to discipline her for it if I might be wrong. My oldest is figuring out the wonderful world of gas lighting because she knows she can play on it with my memory and then make me out to seem like the crazy one.

What do you do when they steal your phone when you aren't looking to check out stuff they know I don't approve of on YouTube? Or take it to download apps they want that you wouldn't approve of? I'm too terrified to put a lock screen on my phone because what if I have a seizure one day and forget the passcode and can't call for help if I actually have that reasoning? What if my kids don't know my pass code and can't use my phone to call for help in such an instance? So, I don't pass lock my phone for that reason. I try to keep my phone with me, but sometimes that's not possible and I set it down somewhere. I'm often going from one room to the next with chores and kids that sometimes I figure I'll be right back and don't need to grab my phone.

She uses my fatigue against me. If I'm tired and need to sit a moment or say, "I'm not feeling well," she takes that moment to go do something that she's not supposed to (often times raiding cabinets she knows she's not supposed to be in or going through the refrigerator to find extra snacks even if she's been fed a meal already).

My oldest is the instigator. If I can stop her from rebelling, it stops my youngest from rebelling 90% of the time. She will whisper to her sister to not let mom catch her, to throw something at me, to steal something from me, etc. and little sis wants to be like big sis.

It's so tiring and leaves me so disappointed. Many days, I have broken down and flat out cried. I get it, maybe I'm boring, but I do what I can when I feel well. I do my absolute best for them each day and only get spit on for it. I like to be able to trust my kids, but my oldest has totally ruined my trust in her with as much as she lies. I do my best, I want to help her work through this and each time she takes advantage of me for it. I love my children with all my heart and it frustrates me to see my oldest acting this way. My youngest doesn't act like this, but I'm worried about the sibling influence the oldest will have on the youngest.

How on earth do you stop your kids from taking advantage of the fact that you have epilepsy?! -_-

 

[Bernard]

I moved your thread to a more appropriate forum. It's also more likely to be seen here.

My wife has epilepsy and she's had her ups and downs with seizure control and "with it" in being able to relate to the kids. Fortunately our kids have always been sympathetic to her situation and they try to help as much as they can. I believe it is a reflection of how we raised them and the character traits we worked hard to instill in them.

Our oldest son nearly turned to the dark side in high school getting in with a crowd of drug dealers/users and we had a rough time with him (lying and such) until we had to drop the hammer on him. Shape up or live life without our support. The party ended and he seems to have seen the light. My point is that even good kids can do bad things. Parenting is challenging for everyone.

 

[Sabbo]

I'm the one with epilepsy. Both our sons understood exactly what to do & how to react during my complex partials. My older son never gave us any issues when it came to studying/education. He's completed his BS in computer engineering from U of IL w/a double major in economics (which is what I majored in).
My younger one (an 11th grader) has started giving us problems & lying about things. He was fine until 8th grade--just before the pandemic. I think what REALLY hurt him was that his freshman year of high school had to be done remotely. It's like he's addicted to video games &/or you tube videos. He just doesn't put in the effort--if you sit with him and explain what the assignment is, he easily understands it.

 

[Porkette]

I don't have any kids but my own parents and my brother took advantage of me time after time. Also when I was still working
in public school I was open with the staff and students about my seizures and there were many times students realized I had a
seizure but when I asked to see there homework they would say " I should it to you, you just don't remember." My family would
come down on me and always borrow money from me then I learned you have to be firm with the person no matter who they
are and make them responsible for their wrong doings because if you don't they are going to keep messing up in life no matter
what happens and it will only get worse. Point out to your kids who feeds them, and who puts a roof over their head and that should
wake them up. If they continue to disrespect, you then need to take their phones from them for about a week and ground them
and that will wake them up.
Wishing You and your family only the Best and May God Bless All of You,

Sue

 

[Heavy Kevy]

I’m fortunate that my kids are sympathetic. Everyone has different problems My freshman just shrug’s at any question. “I don’t care”. No interest in anything but her phone. My seizures have made me miss out on a lot of “parenting”. Feeling good enough to simply watch her practice something would have helped. My son is into horses. He’s just spending all my money.
“The best part about kids is makin them”
-Rodney Dangerfield

 

[XxBlaqkxX]

I moved your thread to a more appropriate forum. It's also more likely to be seen here.

My wife has epilepsy and she's had her ups and downs with seizure control and "with it" in being able to relate to the kids. Fortunately our kids have always been sympathetic to her situation and they try to help as much as they can. I believe it is a reflection of how we raised them and the character traits we worked hard to instill in them.

Our oldest son nearly turned to the dark side in high school getting in with a crowd of drug dealers/users and we had a rough time with him (lying and such) until we had to drop the hammer on him. Shape up or live life without our support. The party ended and he seems to have seen the light. My point is that even good kids can do bad things. Parenting is challenging for everyone.

I'd nearly forgotten about this thread >_<

It must be nice to have kids sympathetic to your situation...mine are not and it honestly stinks

I don't know...I have worked with them so much on good character and for whatever reason, it never settles in their minds. I can't figure out why. Each time they're rude, I address it. Each time they steal or lie, I address it. Each time they try to hit, kick, punch, and fight. I address it. I try to show them the right way to behave. I work with them through, "What can you do when you're angry? Let's make a list together!" I feel like I've done everything on God's green Earth to curb the behavior and for some reason it doesn't work...I have not taught them to be manipulative, rude, to lie, or be violent.

I have an idea with my oldest that she's had sadness turn into rage because of an incident that happened years ago and it's honestly a long story and super frustrating and disappointing to me. The trauma is real, I guess...so real it sticks around for years and years if not forever. I have worked with my oldest so hard...I've homeschooled her, worked with her on behavior and everything, and still - it's like everything we learned she throws out the window. I've thrown in the towel and sent her to school during the day because she wouldn't listen to me like a teacher, she was falling behind because she was rude and wouldn't listen. At school, she's doing great, though, and here I am - feeling like I've somehow failed her...

I still don't know what to do with the kids some days...it's like...they don't listen, they say they hate me because I can't drive and take them anywhere fun....they're great at hurting my feelings.

 

[XxBlaqkxX]

I'm the one with epilepsy. Both our sons understood exactly what to do & how to react during my complex partials. My older son never gave us any issues when it came to studying/education. He's completed his BS in computer engineering from U of IL w/a double major in economics (which is what I majored in).
My younger one (an 11th grader) has started giving us problems & lying about things. He was fine until 8th grade--just before the pandemic. I think what REALLY hurt him was that his freshman year of high school had to be done remotely. It's like he's addicted to video games &/or you tube videos. He just doesn't put in the effort--if you sit with him and explain what the assignment is, he easily understands it.

Sorry to hear things with your youngest son got rough. Think the pandemic was hard on everyone and students were a big part of that, too...I was glad I was homeschooling my kids at the time because that's basically what was going on most places anyway.

I know how it is to be addicted to video games and the internet. That was totally me in high school, but it's because I got bullied and felt embarrassed about my medical issues so I shied away from my peers and got my social satisfaction through the world wide web...I guess I'm kind of still doing it on the social aspect, but I clearly don't have time to sit here all day as an adult.

It seems there are so many smart kids out there, but don't want to use the smarts. I don't know what's going on, but that's a lot of kids at my oldest's school, too.

 

[XxBlaqkxX]

I don't have any kids but my own parents and my brother took advantage of me time after time. Also when I was still working
in public school I was open with the staff and students about my seizures and there were many times students realized I had a
seizure but when I asked to see there homework they would say " I should it to you, you just don't remember." My family would
come down on me and always borrow money from me then I learned you have to be firm with the person no matter who they
are and make them responsible for their wrong doings because if you don't they are going to keep messing up in life no matter
what happens and it will only get worse. Point out to your kids who feeds them, and who puts a roof over their head and that should
wake them up. If they continue to disrespect, you then need to take their phones from them for about a week and ground them
and that will wake them up.
Wishing You and your family only the Best and May God Bless All of You,

Sue

It really stinks to be taken advantage of with a chronic illness...it's just...awful.

The playing on the bad memory thing is a huge peeve of mine! I'm sorry to hear that your students would do it to you.

My oldest does this too me often. I nearly lost my mind the other day, not in like an angry way, but I in an anxiety type of way like I was just gonna have a breakdown and cry type of thing. I got socks together and placed them on top of my shoes neatly telling myself, "There, now I will remember that I placed my socks here so I can get my shoes on in a minute." I left the room and in a few minutes, came back to put on my shoes. Husband and kids are ready to go, and me looking like the ill prepared one saying, "Where did my socks go? Didn't I just have them?" I start looking around the house thinking I misplaced them, but knew for sure I placed my socks on my shoes so I wouldn't misplace them or forget them!

So, I waste another 5-10 minutes trying to find a pair of socks out of a clean basket of clothes. I finally find some. I come back to put my shoes on. I had 2 pairs of socks stuffed into my shoes...my oldest laughed and thought it was funny when I'm about to cry thinking I have lost it and gone completely crazy minded. She didn't care, she did it again later on anyway...

I made this epilepsy awareness ribbon keychain that I put on my keys, but kinda forgot about it there. We were in the bathroom at the mall and she held the keychain and said, "Everybody, my Mom has....!" and then I said, "Don't you dare." and she kept trying to say it...like...it was already a bad day, but she just pushes it.

She tells me how she wishes I could drive because I can never take them to anything fun. She despises me a lot over that it seems. Some days I'm feeling too yuck to take them out to the playground nearby and need extra rest, but I feel guilty for it each time because then the kids start acting up and getting stir crazy and taking it out on me.

I can't even keep count of how many times I've pointed out the reality factor of they can't take care of themselves yet because they don't know how and are too young to do so and that mom and dad pay for the food, pay for the TV they like so much, pay for the home we live in, etc. but something isn't clicking...especially with my oldest.

My kids do not have any cell phones. They're far too young for that, and I dunno, maybe they can wait until college like I did to get a first cell phone. The only time I'd consider a little cheap phone is if they went on a trip or something with friends or school as an emergency type thing, but that would be far into the future.

I've taken away privileges and that doesn't click, either. I've taken away the television from my oldest (that's when she gets to the point of stealing my phone when I'm not looking to watch YouTube, which she's not supposed to even be on). I don't use a pass code because I don't want to have a seizure and forget it and not know how to call or text for help. I need my phone nearby as well because of thinking I might have to call somebody. I can't imagine having a day I can't get out of bed and not have my cell phone nearby where I can contact someone (like what happened a week or so ago). I have disabled YouTube, but she still finds games and other ways to access the internet. She knows how to turn on my WiFi and Data even when it's off. She's smart when it comes to things like that. Sometimes she's sly and will get on my phone or find some other means to watch television without watching the TV itself, but she won't tell anyone about it, but is clearly lying or hiding something. Adding another day for each day she disobeys doesn't work because she knows she'll find the loophole somewhere...

Also, if she doesn't have some type of stimulus for throughout each second of the day (electronic screens, playing outside, going on a car ride, doing an activity, etc.), she gets annoyed and irritible and causes problems. It's hard to get her to play with toys like kids her age should be doing. "Boredom" with her gets out of hand...

 

[XxBlaqkxX]

I’m fortunate that my kids are sympathetic. Everyone has different problems My freshman just shrug’s at any question. “I don’t care”. No interest in anything but her phone. My seizures have made me miss out on a lot of “parenting”. Feeling good enough to simply watch her practice something would have helped. My son is into horses. He’s just spending all my money.
“The best part about kids is makin them”
-Rodney Dangerfield

So many fortunate people it seems I feel like I have the hardest parenting job on the planet. Near daily break downs...ugh...

 

[Porkette]

Try doing this it worked really well for me and that was when I was being put down and bullied about my seizures when I was in HIgh School
or on the job. I would just ignore the person and smile not saying a word when they said something rude because I knew the truth and that's
all that mattered to me and after awhile people stopped being rude to me and stopped cutting me down because of my seizures. They saw
they weren't getting any place trying to hurt me, so if any of your kids are trying to pull pranks on you just ignore them unless it's something
serious and maybe they will stop pulling pranks to upset you.
Wishing you and your family only the Best and May God Bless All of You!

Sue

 

[Sabbo]

My kids are sympathetic about/understand my epilepsy. My younger son is totally addicted to his phone. I often tell my husband it appears that he apparently wasn't ready for a smart phone--he only deserved one of those old-style flip phones.
Once, he even found a way to get around the system & get online when my husband had his account turned off at night (usually from 9pm to 6am)!! He'd hide his laptop under his bedcovers & play on it. I think part of the problem may be some of the people he met playing games with online, giving him these ideas and not focusing on their education (or already done with it if they're older).

 

[XxBlaqkxX]

Try doing this it worked really well for me and that was when I was being put down and bullied about my seizures when I was in HIgh School
or on the job. I would just ignore the person and smile not saying a word when they said something rude because I knew the truth and that's
all that mattered to me and after awhile people stopped being rude to me and stopped cutting me down because of my seizures. They saw
they weren't getting any place trying to hurt me, so if any of your kids are trying to pull pranks on you just ignore them unless it's something
serious and maybe they will stop pulling pranks to upset you.
Wishing you and your family only the Best and May God Bless All of You!

Sue

Ignoring it is hard...I mean, if it's other people in real life that I literally can't do anything about it's one thing, but for the kids...it's another.

I don't want them treating me bad or think it's okay to do it. I know sometimes ignoring it and not giving the attention can help with some things.

It's kind of hard to ignore them intentionally flickering the lights on and off in rooms after they've been told that makes my head feel fuzzy and light headed. Hard to ignore when they steal my socks and hide them in my own shoes when we have to get out the door when we're almost late somewhere, but I end up having to spend an extra 10 minutes finding new socks only to find I can't get my shoes on because it's stuffed full of socks...

It's hard to ignore when they steal my phone to do whatever they want on it when I need it nearby. It's hard to ignore when your own child says you're basically useless to them because you can't drive...

I'm not sure how to ignore things that shouldn't be so hard for them to stop doing if I ask...

At least crying helps me feel a bit better sometimes...

 

[XxBlaqkxX]

My kids are sympathetic about/understand my epilepsy. My younger son is totally addicted to his phone. I often tell my husband it appears that he apparently wasn't ready for a smart phone--he only deserved one of those old-style flip phones.
Once, he even found a way to get around the system & get online when my husband had his account turned off at night (usually from 9pm to 6am)!! He'd hide his laptop under his bedcovers & play on it. I think part of the problem may be some of the people he met playing games with online, giving him these ideas and not focusing on their education (or already done with it if they're older).

Screen addiction often times has a reason behind it...

Extreme depression was one thing that kept me feel better in front of a screen. The depression made me stop caring about school until I realized I was failing my senior year so I pulled myself up enough to graduate, but it was miserable and I still wasn't any less depressed. For some people, it's trauma that keeps them in front of a screen because it's a high stiumulus that keeps you distracted from your problems and thus becomes addictive for people with a lot of emotional pain.

I'm not sure if you've asked your son why he enjoys sitting there for so long? I mean, he may not even know, as I didn't identify the reason for my own problems until I was an adult and looking back on, "Why did I do that to myself?"

I still have to be careful with screens. Get the right thing going on them and I am addicted. They just hold this incredibly addictive power to me. Perhaps some people are more prone to screen addiction than others.

I would threaten to kill myself when my parents would take the internet away from me. One time I ran away because they took the internet from me. My dad would sometimes hide the router and I would turn into a rage because that was my link to a world where I felt people were nice to me, they couldn't judge me for my problems. Of course there's trolls and such, but I did find a lot of nice people to chat to on the internet. It was my gateway to the world because talking to people with my condition in real life wasn't a favorite thing...

I had problems...it's not that he may not be "ready" for the smart phone...he still might be just as prone to screen addiction when he's an adult and needs that phone. It's about nipping the source in the bud and finding the appropriate alternative activities to replace the screen time with.

My oldest grew up a literal no-screen kid. We only watched tv on Friday's and that was a movie night with the family, and she would sometimes fall asleep before we even finished the movie. Then, I babysat for a little while and the poor little guy could only fall asleep to the tv. My oldest got hooked, and my husband likes tv. I don't like the tv so much, I think I had too much of it growing up. I prefer games or online activities where I'm actively doing something other than staring.

But when my oldest got a taste for games on a phone or a tablet while we traveled or needed to have important conversations with people that she would probably interrupt otherwise, it has become something important to her. I figure some other reasons she's grown more prone to it, but since putting her in school, she can't watch tv all day there...and she's rarely been watching tv at home. I rarely let her on my phone because she does stuff she's not supposed to and bypasses my settings.

 

[Sabbo]

My husband & I have discussed it a lot. Both of us think that a major factor was his freshman year being fully remote. That prevented him from meeting & becoming friends with students in the courses he was taking (he's in honors courses). Even his sophomore year wasn't fully on campus. Our older son had similar classes--he made friends freshman year, & they were together in most of their classes until senior year.

I know what bullying feels like. Sixth through ninth grade were hell for me. I'd go to bed at night hoping I wouldn't wake up the next morning. At that time, "Ignore it" is what everyone said. Now I'm a master of hiding how I feel--sad, happy, angry, etc. I even hid it/didn't cry when my father passed away at the hospital.

 

[XxBlaqkxX]

My husband & I have discussed it a lot. Both of us think that a major factor was his freshman year being fully remote. That prevented him from meeting & becoming friends with students in the courses he was taking (he's in honors courses). Even his sophomore year wasn't fully on campus. Our older son had similar classes--he made friends freshman year, & they were together in most of their classes until senior year.

I know what bullying feels like. Sixth through ninth grade were hell for me. I'd go to bed at night hoping I wouldn't wake up the next morning. At that time, "Ignore it" is what everyone said. Now I'm a master of hiding how I feel--sad, happy, angry, etc. I even hid it/didn't cry when my father passed away at the hospital.

These past few years have been hard times on a lot of us.

I suppose with having kids always comes challenges and we adapt, guide, and advise the best we are able.

I hope the concerns with your son show improvement soon.

 

[leahmell]

Hi there, I hope you're doing well. As a foster parent, I can imagine that it can be a challenging and rewarding journey.
Have you considered connecting with other foster parents in Oregon? Support groups or resources might be available to help you navigate your situation. Joining a community of foster parents who understand your unique challenges could be a great way to find the support you need.
I hope this helps, and feel free to reach out if you need anything. Take care!

 

[Sabbo]

Unfortunately, my son's habits haven't changed although we constantly remind him that this is his junior year, & major exams/decisions are looming!! My husband & I still have to ask him AND check EVERY day if he's got/done homework in his math & science classes. My husband actually sits with him almost every night to make sure he completes assignments. He usually doesn't have any problem understanding the information--he's just lazy, & doesn't want to do it!!

 

[Bernard]

... he's just lazy, & doesn't want to do it!!

Sounds like a typical teenager from my experience.

 

[Sabbo]

The odd part to me is that I was never like that in relation to schoolwork. He's also VERY unorganized--which I've been trying to get him to improve on since before his freshman year.