School Nurse

[tinasmom]

I think that the school nurse is a little upset with me. At the beginning of school, she said that she would talk to Nicole's class about seizures. At the last school meeting that she attended (3 meetings ago), I brought this up again and she said it would be done. At this last meeting, which she did not attend, I brought it to the principal's attention that this still was not done and she said that she would get a hold of her. Yesterday, I left a message that I wanted to talk to the nurse about how she was going to talk to the kids. She called me today at work and was very short with me because I told her that before she talks to the kids, I want her to talk with the program director to make sure her materials are up to date or if she doesn't have time to do this, let Jeanne know and she will talk to the kids. She told me that this will be done on Thursday. I will be writing a letter to the school superintendent to let him know of how she has not carried through with this request from the start.

 

[skillefer]

*sigh* Some school personnel are such twinkies. I'm glad to hear that you're keeping the school and it's staff accountable. Alot of parents give up either out of frustration or fear.

 

[Stacy]

I agree. If nothing else, why don't YOU offer to talk to them about it? Put together a little show and present it to the principal. Oh...welll.... that IS a lot of work.

 

[tinasmom]

It really is not that much work for me to do it as I am very involved in our local Epilepsy Foundation and I have been HOPE trained. I have access to all the materials, it's just that I do not have the vacation time to take. My vacation time is used for Nicole's appointments and school meetings. I have a boss that is not married and has no children so he is not that understanding. I would love to be able to not work and just go around and educate people on Epilepsy. Maybe someday I will win the lottery and then I can do just that.

 

[stilldancing_98]

I am sorry you are having to go through that. I don't work , I am on dissability. I have had some teachers that did not listen when it came to my son. I gave them books that were mine , some more updated. I went to the same schools as my son so i knew some people. But I moved him 3 times because of lack of cooperation. I learned a lot to. As long as you know your stuff and you research you will be ok. And set up a meeting just for her the teacher and the principal. Be nice and bring info. Tell them it will help everybody .Im pretty blunt . As you can see. For me I would say "Now I will leave you a lone for a while." lol

 

[tinasmom]

Actually the school has been good so far. We had a little trouble at the beginning when they didn't want to have seizure training for all staff. Now, I think they are glad they did. I just kept persisting. We have meetings about once a month to discuss Nicole's progress and the school nurse has only shown up for 2 of these meetings. Today I talked to the program director at the Epilepsy Foundation here to see if the nurse had contacted her yet. Guess what, she had not which did not surprise me. I then called the school district to express my concern with the nurse not carrying through. I think that he was trying to pacify me by telling me that she did have the nurse seizure training. I asked him if this nurse had the training and materials to talk with the class. His reply was I don't know because I did not attend. I then told him that I have been HOPE trained to do these inservices and it does not train them how to talk with kids. He didn't realize that he was talking to someone who knows the training. He then told me that he would talk to the nurse but she wasn't at that school today so it would probably be tomorrow. They don't realize it but I have learned that when I start hitting walls, I become the bull that knocks through them. Along with age comes knowledge and less fear of standing up and saying something. I used to be naive and think that they really were doing everything they could, but I have opened my eyes and sucked up so much knowledge. At the end of the month I am going to the school board to present my case as to why everyone in the district should be seizure trained. I am sure that they won't listen to me the first time, but I am sure that they will get tired of me coming to the board meetings and will finally see the benefits. Sorry for the long post, I'm just on a roll tonight.

 

[epileric]

I have learned that when I start hitting walls, I become the bull that knocks through them.

You go TM! :mrt:

Keep us updated on how things go.

 

[tinasmom]

Today I got a follow up phone call from the school district about this issue with the school nurse. Needless to say, he was not listening to what I wanted. He told me that the nurse would be talking to Nicole's class on Thursday. I asked if she was going to talk to the program director as I had requested. He just kept telling me that she was an RN and had the seizure training. He also kept telling me that he was confident that she could present this. We went around and around for a while, me asking if she was going to call the foundation and him giving me the same answer. I finally asked who I needed to contact, because my request was not being met. He gave me the name of his boss and then I did tell him that I would be contacting the foundation to see what I needed to do legally to have my request met. He then said that he would have the nurse call them. I told him, that is all I wanted her to do. I just wanted her to make sure she had the most updated materials. The program director called me after talking with the nurse and they came up with some good ideas on presenting this information to the class. The program director even had to tell the nurse why I wanted her to talk to the foundation. It seems that as soon as I asked them to verify that the materials were up to date, their ears closed. I am sure that this will go just fine tomorrow. I guess that I am learning that these people are walking around with blinders on and only hear what they want. They will eventually learn that I do not give up and maybe they will learn to listen to what I am saying.

 

[Birdbomb]

Did you ever think of printing up your own material? Or is that not allowed?

I know for my job, I created a few things that mainly pretained to MY situation and then generlized epilpepsy information. Even did a first aid chart and a list of "DO's and DON'Ts"

 

[tinasmom]

Actually, I can get all the information that I need from the foundation here. I am actually on the board of directors and have been very heavily involved with the foundation. The nurse does have the proper materials and I just wanted her to verify that her materials were not outdated. The program director, from the foundation, knows my family very well and actually thought of some things that might come up that even I didn't think of. Like Nicole will probably mention that her mom died from a seizure and the kids might want to know if Nicole is going to die also. So now the nurse will be better prepared to answer that question if it comes up. They just need to understand that I just want us to all work together. It's going to be a long 11 years with the schools and I'm sure they will know us quite well by then.

 

[brain]

Keep going - Push that Envelope
and get that Awareness Rolling
as well as the Exposure!

People NEED TO KNOW and get
it out of the shadows!

You're doing great!

:clap:

 

[tinasmom]

I'm going to the school board meeting this month to bring up the issue of training everyone in the district. I know that they will not agree to this right away, but eventually they will get tired of seeing me and hopefully see why this is so important not only for my granddaughter but for all children and even their staff. I am definitely armed with information and ready for this long battle. I say, "bring on those walls so I can knock them down."

 

[brain]

School Warz

:sw: <--- Tina's Mom

:giveup: <--- School System

 

[super]

Hi there Tina

Having read some of your postings it worries me somewhat that whilst you appear extremely passionate about training, why not look at it from a different perspective. On 4/1/2008 I had a seizure that lasted probably about 3/4 hour and was taken by ambulance off to hospital. I am probably lucky to be alive thanks to an ambo who new how to rouse me, he shouted at me by name the best thing he could have done. I don't know whether he had been trained to do that, he probably saved my life. The best thing you can tell people is call a professional as a matter of urgency.

Everyone is different, and being with faced someone having a seizure is most daunting, and not everyone is able to cope, nor should they have to. Take a step back Tina and reassess your motives and what you want to achieve. Whatever you do don't alienate people from those you are wanting to help, it is so easily done, and people prone to having seizures are most vulnerable and sensitive to how others react, they want to be treated like normal human beings and not being swamped by others emotions. I trust you understand what I am saying.

Cheerio

 

[stilldancing_98]

Im for it. Hope trained. Great. Those are the pamphlets that I hand out.There is more than just reacting to a seizure. i was in status for 45min plus but my son does not have t/c's . The district should know.Can you imagine if a student had a really bad t/c and the Teacher was not up on it? I know most are on basics. But there is more. And that's what the schools are about learning, right?

 

[tinasmom]

stilldancing - Here the only teachers that have any basic training are the ones on the first response teams. Otherwise, the teachers really do not know what to do. The training is the HOPE training geared to teachers. I am very familiar with HOPE as I am a HOPE Mentor.

Super - Why would making sure staff knows what to do during a seizure be any different than knowing what to do if a student has diabetes or any other medical condition? Some people are afraid of seizures because they do not understand and education does help ease fear. Watching someone have a seizure is probably one of the hardest things to do. As for calling a professional, I personally would not want to have an ambulance called everytime Nicole had a seizure. After the staff at Nicole's school went through the training, they were very thankful for the training. I never treated my daughter, Tina, any differently because she had Epilepsy and I am treating Nicole any different either. As a matter of fact, when Tina was alive, she would openly tell people that she had Epilepsy and was never ashamed of it. In my opinion, without education, Epilepsy will always remain as something people don't talk about.

 

[stilldancing_98]

I understand. And I know what a hope mentor is. I was asked by the pres. here to go through it. I understand. I grew up with epilepsy going through all of that. I tell everybody I have epilepsy and I did as a child. My Dad died of diabetes and I took care of him. Now my son has epilepsy. Please I think you should be out there. Go for it. I understand.

 

[tinasmom]

stilldancing - I will continue to push for educating people on Epilepsy. I was a little taken back by super's reply. I believe that E has been kept as "something not to talk about" too long. I know that there will always be people that are uncomfortable with E and seizures. There are people who are uncomfortable around someone with AIDS. No one is going to make me back down when it comes to educating people on this disorder. I believe that we need education more now than ever, especially with our soldiers returning with head injuries. Thanks for listening to me.