Rosie 1 E 0

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JaneC

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I appreciate that my daughter is not as severely affected by epilepsy as many but wanted to share this as an admittedly proud mum of a teenager who is doing her best not to let E get her down.

Rosie has had a difficult 15 months or since her seizures returned. She has experienced mental health issues and also a lot of problems with fatigue which have made life difficult in an important year at school.

Last night was school prize giving. Rosie got a certificate for being third in her year in French and a trophy for her singing and work helping the music department. She also sang with a small group she is a member of and played with the orchestra.

Tomorrow she has an interview for the post of head girl. I doubt she'll get it and in a way I think it is an extra responsibility she doesn't need but I am so glad she has come through the last year with the confidence still to go for it.

I don't mean this post to be boastful, it's just meant to be a positive one, a reminder of what people can achieve despite having E, and a tribute to my daughter's unwillingness to let E get in her way x
 
That's awesome Jane!! Huge Congrats to your daughter (and to you too!) for all hre hard work and determination!! I don't think you were being boastful-i think this is a great reminder that you can still accomplish so much, even with E. Good luck to her with her interview. Let us know how it goes!
 
I think that's wonderful about your daughter. I'd be proud too. Glad you shared. :D
 
Big congratulations to Rosie for her award & hope her interview goes well.
 
Congrats! So nice to hear. Happy mom, happy daughter, screw epilepsy...
 
Thankyou so much everybody. Unfortunately epilepsy hit back with some absences yesterday but hopefully they stayed away during her interview. Alas it was first thing this morning - not when she's at her best!
 
Congratulations to Rosie! I would assume that as a teen it would be harder to deal with. Mine didn't come along until in my 40's. I am happy to hear of a teenager who is taking life in stride and not sitting down and complaining about it. Good job mom!
 
Huskymom, we still have the occasional "why me-s" and she's had to have a little help from the mental health service but mostly she does just get on with it.

Unfortunately she didn't get head girl and is really quite distraught, despite my attempts to prepare her for this likelihood etc etc.

She has to get herself together and play with the school orchestra tonight but I have a horrible feeling how this is going to end up. Hopefully it won't happen during the concert (I'm currently at work).

Not the school's fault but it's a real blow to the self-esteem building we've be trying so hard at.
 
Rosie has been chosen as a house captain, for which I am greatly relieved.

Her reaction to not getting head girl or deputy was quite alarming - she was unbelievably upset. It was partly a drip, drip effect of a several things that happened this week, I think, But I was wondering.

Do others with E tend to react particularly strongly, in an emotional way, to upsets and setbacks? It is an E thing? Thanks in advance for any comments x
 
hey, congrats for you and her!

In terms of emotional stuff, there is some correlation between strong emotions and E. Mood swings can be caused by meds and/or by seizure activity in the areas of the brain that that process emotion. On the other hand she's a teenager, right? Raging hormones can make you moody too... :)
 
That's the thing Nak, how does one know what's normal teenage hysteria lol? My other two are boys and there genuinely does seem to be a difference in the way they cope! x
 
Quick update, Rosie did really well in her exams this summer 3 As a B and a C. We're hopeful the C will be upgraded on appeal and if that happens she should get an unconditional acceptance for the university course she hopes to start next year.

Things have been quiet (touch wood) on the seizure front, possibly because she gets more rest over the summer holidays.

I am also now in dialogue with her school over the lack of support they have given her. Long story but their latest version of events is that the schools deal with the paediatric neurology service and Rosie is an adult patient - as will be the case with any 16, 17 or 18 year old newly diagnosed or whose seizures have returned.

Some of the stuff I've been told doesn't add up but at least we're getting somewhere. Should have done it a while ago but it's hard to access things you don't know exist. Just highlights the importance of people with E and/or their families making sure they are as clued up as possible.

Rosie has a lot less on her plate this year so is planning to do some E awareness work in school. At least they made some supportive noises about that.

Hoping everybody is doing well xx
 
You can brag all about her as much as you want!!!! I didn't have epilepsy when I was in school and she's doing better than I did - lol

One thing that I know about teachers are the older ones really didn't want to learn about problems that the students may have. They just went by how things were when they were in school. If the student had some sort of problem then there was 'just something wrong with them' and that's the way they still see it.

With the younger teachers they did learn about things going on with the students so they would understand and know how to try to teach them in a better way. Some even learned about it in college.

If her grades start to decline you might want to have her not be involved in so much. She may not want to hear that but it could be better for her in the end.
 
Good for Rosie for being comfortable being so open about her condition! But having said that, I hope her desire to raise epilepsy awareness at her school doesn't backfire. It's one thing to let her friends and her own teachers know about her condition, but to let all the kids know might be setting herself up for finger pointing, teasing/bullying and discrimination. I don't mean she should hide her condition exactly, but just wondering if it is the right decision to so pointedly announce (so to speak) she has epilepsy. As we all know, bullying is different than when we were kids in school, and I think much more devastating.
 
masterjen said:
Good for Rosie for being comfortable being so open about her condition! But having said that, I hope her desire to raise epilepsy awareness at her school doesn't backfire. It's one thing to let her friends and her own teachers know about her condition, but to let all the kids know might be setting herself up for finger pointing, teasing/bullying and discrimination. I don't mean she should hide her condition exactly, but just wondering if it is the right decision to so pointedly announce (so to speak) she has epilepsy. As we all know, bullying is different than when we were kids in school, and I think much more devastating.
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I never thought of this. I don't know if she's just going to tell the teachers or the whole school about it.

There are so many more ways for children to bully each other these days. They can post things web sites like face book, youtube and twitter. They could put a video of someone on there shaking saying "Look I'm Rosie". They might say "Too bad Rosie didn't have a seizure today, I really wanted to get out of that test!" And who knows what else....

Even if she were to have a seizure in school someone could video tape it and put it on one of web sites saying some pretty nasty and embarrassing things.

I hope I didn't sound rude by saying these things.
 
No, you don't sound rude at all. You elaborated on exactly what I was thinking. Kids can be so cruel, and as you say there are so many more ways for kids to bully one another these days.
 
I appreciate your concerns ladies but I think it will be fine. Rosie is 17, In her final year at school, a prefect and house captain, and, I think, pretty popular and well respected. She wants to do this because she feels it means something positive will come from the fact she has to live with E. if she'd been in, say, first year (11-12) I might have felt differently.

She is in an excellent position to demystify and educate about E, because hopefully other pupils will look at her and think - ok, she's pretty normal, does well at school, doesn't have horns growing etc.

She will be working with a charity which particularly focuses on teenagers with epilepsy. One of their workers will give a talk in which Rosie will also be involved. We have already seen the benefits of this as when Rosie came to tell her boyfriend about having E, they had been to his school and he already had some grasp of the subject.

The whole point is to educate in the hope that it will reduce bullying of people with E. no guarantees but it surely can't do any harm x
 
Sounds like Rosie is a terrific teen -- with or without epilepsy in the background. A pat on the back to both of you...
 
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