Update on school board meeting

[tinasmom]

I still have not heard anything from the school board regarding training, since I attended a meeting in late February. I recently sent a letter to the school board president directly. I once again expressed how important seizure training is, not only for those who inform the schools they have seizures, but also for the person that has their first seizure at school. I also gave her the link to the National Epilepsy site and enclosed a brochure from our local affilate. I am hoping to hear from her soon. I have decided that if she does not respond to my letter, I will contact the newspaper. A gentleman that I know, who is politically connected to the community, wanted me to go the newspaper first. I thought that I should give the school board a chance to do this on their own first.

[Bernard]

I hope they appreciate your discretion. Beauracracies ...

[tinasmom]

One good thing is that a local EMT has agreed to come to our stroll, and he is on the school board. The gentleman that is politically active in the community, invited him and I'm sure we will be introduced to each other. It's so amazing how God places the right people in our lives at the right time.

[brain]

I have a WORD I want to post here but
I can't use it but (BLEEP) the RED TAPE!

Go and Kick Some Rear Ends and DEMAND
THEM TO GET MOVING!

[stilldancing_98]

I sent my boy to school today and got a note back saying he fell off his chair 5 times. no phone calls or anything. This is a good group. But why didn't I get a phone call from a nurse. I have taught these people about epilepsy.And much much more.5times thats crap

[tinasmom]

Brain - Although I really feel like asking everyone on the school board "How ignorant are you to our children's well being?' I decided to let them know that surrounding districts are trained and they could be the largest district in this area to have the training. I'm trying to pump their egos. I'm learning from my friend, Jeanns, how to handle these people. She was a school teacher before she came to our foundation, so she helps me to say the right things. Although I'm always venting to her on how I really feel.

[tinasmom]

Stilldancing -

Have you given the school a seizure action plan to follow? I received one from our local foundation and presented it to the nurse when I first met with her. She was very impressed with this plan and has started using it with other students. It took me quite a while to get Nicole's school seizure trained, but I wouldn't give up and just kept setting up meetings and expressing my concerns. Needless to say, they have realized that I am not going away and I will continue to fight for what I believe in. The school nurse should have contacted you immediately. Sometimes, you have to keep telling them over and over before they finally get it. If we don't fight for our children, who will?

[stilldancing_98]

Thank-you everybody for caring. I appreciate it. Yes, I have a plan but now because of what happened the epileptologist center called the school and me to and we up dated the plan all over again. With an update to the IEP . A para at his side at all times right now because of med changes and plus I was in the middle of changing that anyway. Now the Dr.s not only have their input but everything is updated and Alex's seizures are under control.

[tinasmom]

I am so glad that everything is going well for you now. Those of us who have to deal or have dealt with the school and seizures know it is a never ending battle. These people need to think about whether they would want their child treated this way. They also need to be reminded that anyone at anytime in their live can start having seizures.

I know that someday Epilepsy/Seizure Disorder awareness will be just like other disorders. Although I may not see it in my lifetime, I will teach my children to continue to work for this goal.

[CJR]

Stilldancing~
I feel your pain. I physically go to the school once a week and speak to them (nurses, teachers, principal) regarding my daughter's seizures. I have been told each week that she is showing no seizure signs in school. They have noticed that she is off balance but that's it. I have specifically & repeatedly told them that some of my daughter's seizures present with severe eye rolling/fluttering and jerky movements of the hands. Yet they have noticed none of these seizures. One teacher told me, "Oh she's doing fine here at school. Not one seizure." When she got home that day I counted 13 in one hour. So there is no way she wasn't having ANY in school.

They've sent home two notes at the end of the day that stated she had dropped her books for no apparent reason and that she had fallen but they think she tripped (but they were unsure on what). I LOVE our school but since we've begun this journey it's been a real eye opener. The local EFA chapter has already offered to come out and to educate the teachers but we have less than a month left until summer vacation. Next year she switches to middle school and she will have 8 teachers through out the day. So I think I'd rather wait until next year and educate all of them.

On the bright side, the school did inform me about an upcoming field trip to a science museum which will also include an IMAX movie. Because she is photosensitive they asked me to attend to supervise her needs during the movie. She has seen IMAX movies prior to her diagnosis and hasn't had a problem but I'm worried about this now.

[tinasmom]

CJR -

You might want to talk with the middle school regarding the training and get them to set a date for training. It might be possible to have them trained right before school starts next year. Sometimes they are not real receptive to training.

[CJR]

What a great idea! I love the thought of training before school starts (especially if I could attend!) It would give me a chance to meet all of her teachers and raise their awareness that daydreaming IS a seizure. I'll talk to them this week.

[stilldancing_98]

They have a diary in the classroom. The priciple has been very good to me. the nurse is on top of it. But now my son loved the attention so much he started faking them. The terd. I went thru that as a child.That nurse watched him all day and alex pulled the chair out beneath him to fake a myoclonic. That school is awsome.I have gone thru the fights with other schools.Now we are here. Thank the Lord. And I told the team that.Thanks every one.

[tinasmom]

CJR -

Don't be surprised if they are resistant at first. I actually had to have meetings twice before they would agree. I asked the program director from our local foundation to go with me but she was busy so the Executiv Director went with us. They kept focusing on the fact that they have a "Response Team" and that the nurse was trained. The nurse has 4 schools to cover and is not at Nicole's school all the time. You might want to ask someone from your foundation to go with you. Even though I kept telling them that not all parents will let the school know their child has seizures and that a first seizure can happen at any time, it was not until they were given actual numbers of students that can have a seizure at their school, based on facts. I would suggest that you do research and give them handouts. The more information to get them to say yes, the better. I can send you copies of some information that I have given to our school. Good Luck! You can make a difference.

[CJR]

My school is a very rural school with a total of 64 children in my daughter's grade level. They still house Pre-K through 12 grade all in one building (less than 800 students). The response team consists of teacher, nurse, principal. The nurse is in the building at all times and she has an assistant for the office when she steps out to attend to injuries. Matter of fact our nurse's son had a TBI that resulted in seizures (which he outgrew) so she is very knowledgeable. Don't get her started about the importance of bike helmets...

The principal has taken the time to speak to both myself and my daughter about her condition on several occassions but... For the most part the seizures that my daughter has are NOT disruptive so they are easily overlooked. I've sent a diary to school and check it everynight for a note from the teachers but they've never written anything. When I speak to the teachers about it they make me feel like because the seizures aren't disruptive that I'm making mountains out of molehills. That may not be the intention but that IS what it feels like.

However, if I ask for a meeting I have no doubt that I could easily get everyone from the superintendent to the nurse all in one room with only a couple weeks notice. That is an appointment that I will be arranging as soon as I get her in to see the neurologist.

[tinasmom]

CJR -

Ask your foundation if they have seizure video's. There is a great video by the National foundation that shows many different types of seizures. The video is kids having real seizures. Since I've seen this video, I can actually tell when someone has an absence seizure. We were watching TV the other night and I actually realized that the man talking just had an absence seizure. I can find out the actual name of the video for you.

[Bernard]

CJR -

Ask your foundation if they have seizure video's. There is a great video by the National foundation that shows many different types of seizures. The video is kids having real seizures. Since I've seen this video, I can actually tell when someone has an absence seizure. We were watching TV the other night and I actually realized that the man talking just had an absence seizure. I can find out the actual name of the video for you.

If anyone has ported it to YouTube, we could post it here.

[CJR]

I recieved the E.F. newsletter with the link to "Childhood Epilepsy: What You Need to Know" by Beckett Films. While I thought the 8 minute clip was great for letting me see how other parents felt and responded I was not prepared for my daughter's reaction. In the clip they show several different types of seizures. My daughter had never SEEN a seizure and so she suddenly realized how "scary" they looked. My son watched the clip as well and his reaction was a bit different. He said, "Compared to you that seems mild." Which didn't really help her calm down any. But it did launch an excellent family discussion.

[RobinN]

That is a great video. I love the emphasis on the fact that a seizure will look different in every person.

[tinasmom]

The video that is used here is called "Managing Seizures in Children". I am waiting to hear if we can get permission to post it on YouTube. So many people are amazed at the different types of seizures. Most people are used to only knowing about what they still call "Grand Mal". It is a real eye opener to most people.