Why does no one get it?

[CJR]

I'm venting! I am so upset right now I could cry!

I got a phone call from the school nurse just abour 45 minutes before dismissal today. Shan was in there with a trembling leg. Okay. I asked to speak with her. Once she was on the phone I asked what was going on. She responded, "Well, um, I....Well, um, I....Well, um....Well...."

I said "It's okay honey. Let me talk to the nurse."

When the nurse returned to the line she said, "That's odd she was just speaking so clearly about what was going on."

I explained that Shan was having a seizure.
She said, "Now?"
"Yeah."
"Right, now?"
"Yes."
"But she looks fine!"

Oh my GOD! What do I have to do to get these people to understand? I've been in there every week telling them repeatedly what to look for!!!

But if you think the story ends there...You'd be mistaken. After getting home and waiting for Shan to have a functioning brain moment I questioned her about her day.

1st period~fine
2nd period~Teacher asked her a question. She knew the answer but couldn't get the words to come out right. So she stopped and tried again. Eventually, the teacher called someone else.
3rd period~She said the teacher sounded like the teacher from Charlie Brown. Far away and fuzzy and she couldn't understand the math.
4th period~Became enraged and slammed down her flute. 20 minutes later (at the end of class) she was disciplined and given a warning. If the behaviour happened again she would no longer be allowed to attend band.
5th period~lunch~ no incidents that Shan can remember
6th period~again no incidents that Shan can remember
7th period~Leg starts trembling
8th period~Finally goes to nurse for leg tremble, and of course I realize that she is having difficulty expressing her thoughts.

Am I over reacting or did the school miss like 4 warnings that she was having seizures? I don't think I would be this upset if I hadn't gone in there repeatedly and talked to them about what her seizures look like. The band teacher is the only one who I did not tell about the attitude being a seizure. I'm not sure why we didn't speak about it other than the photosensitivity seemed to be the biggest trigger in the band environment.

Needless to say, I am fed up with the school! I have asked for a 504 meeting but no one has called to schedule one so tomorrow I am going to go to the school and meet with the principal of the middle school to get things started. One way or another...

I am also going to take a written list of Shan's seizure symptoms. And every teacher, aide, bus driver, lunch lady who has anything to do with Shan WILL receive a copy. It will also have a clear cut section to tell them "What to do". Although, if I don't get some real action from them soon I may tell them where to go and how to get there!

As always, thanks for letting me vent.

[Bernard]

Confucious say, "teachers must learn before they can teach".

(well, I'm not sure he said it, but it sounds like something that would be attributed to him.)

It sounds really frustrating, but people who are not used to witnessing seizures are often surprised when they finally see a non-tonic clonic seizure. They never suspect it to be what it is.

[Georgiagirl88]

I am so sorry about your daughter's day! That is terrible. You are not over reacting at all! My sister has to deal with this with my nephew. He is anaphylactic and some people do not get that he would die if he ingests any dairy product, egg, nut, any food with a hidden ingredient. His allergies are off the charts. He is 10 now, but when he was smaller..it was very hard. Now he can speak for himself..but your poor daughter cannot speak for herself when she's in the middle of a seizure. They need to be set straight. I know for my sister they have a meeting with all school administrators, bus drivers, cafeteria, nurse etc. anyone, teachers, art music..anyone who is going to be in contact with your child. You are your child's advocate.. I was furious when our daughter was in 3rd gr. and broke both wrists on the playground..I wasn't called at all..she came home on the bus!! Can you believe it? She almost fainted from pain when she got off the bus. I cried!! I was so sad she had to deal with it on her own and suffered in pain... alone!! Mom, you do your thing and set them straight! Hope She is feeling better!

Michelle : )

[RobinN]

WOW... but it doesn't surprise me.
Bernard is right. If they have only seen one type in a movie, they just don't know what to expect. Though you have gone to them, which is infuriating.

I had one parent say to me.... But Rebecca doesn't have the normal kind right? She just lays down and goes to sleep?... It took a lot of patience not to roll my eyes and have a sarcastic answer. I said,"You do know there are 40 different types of seizures, right?" He said, "Well yes...." I said "Rebecca has Tonic clonic seizures, and yes she does have convulsions. They just might not be a violent as you have seen them portrayed." That shut him up.

I sure wish there was a better way to inform people, but I guess one on one is sometimes the only way. I have also realized that I can't come off displeased with their questions, because how will they learn... So I take a deep breath and offer what I know , when I can.

[nana1]

I am sorry this had to happen. Some or all teachers don`t seem to want to listen to use, they think they now it all but they don`t. You can tell them to you are blue in the face, weither they listen is another thing.You may have to get information on what a type of seizure is and how to handle it, you may have to get it on line then copy it and give it to all teachers and every adult involed. For your child sake do this as soon as you can, that way this will help her, since she can`t help herself while in seizure. Unless teacher can tell she having a seizure, that way teacher will not get on child case for acting up, it not her fault.




nancy

[tinasmom]

I am so sorry that Shan had a bad day today. Do you have a local Epilepsy Foundation near you? If so, contact them to see if they can train the staff at the school. The hardest part will be to get the school to agree to training all the staff. You will need to set up a meeting to discuss the training. You might want to take someone from the foundation with you for support and to tell them things you might forget to tell them. I got a form from my foundation that I filled out and gave to the nurse. You can put in there what the seizures look like and how you handle them. This form is very detailed and the nurse at Nicole's school now uses this form. If I find the form, I can send it to you. It's a battle to get people to realize not all seizures are the same. The only seizures that people seem to relate to are the "Gran Mal" (old term). I'm still working on getting the video that our foundation uses for school training put on YouTube.

As frustrating as it is, they will finally listen to you. My mom always said "It's the squeaky wheel that gets oiled first." It's a long hard battle and sometimes it seems like you're never going to make it to the top of that mountain, but you will get there.

If you request an evaluation for an IEP or 504, they have to honor your request. I am sending you a GREAT BIG VIRTUAL HUG!! Hang in there!!

[CJR]

I've spent the better part of the evening working on a chart. Three columns: Seizure Type....Seizure May Present As....What to Do. I was very specific.

Each row ends with one of three options:

1. Send to Nurse if Necessary
2. Mandatory Nurse Visit
3. Call Nurse Immediately!

I just don't think I can leave it up to teacher discretion. I've printed off 15 copies and will be headed into the school in the morning to give them to everyone who comes into contact with her.

Thanks so much for your support. Sometimes, it just helps to hear whether or not I'm over-reacting or if I need to stick to my guns.

[skillefer]

Hi CJR! I'm so sorry to hear that your daughter had such a lousy day at school. And I'm sorry to hear that the school your dealing with is a bunch of yutzes. I don't know...maybe it's because of the fact that I have seizures...but when I see a kid that might be having seizures, I always notify the parents and suggest a visit to the doctors. Just stick to your guns. Remember, you are your child's first teacher, and best advocate. If all else fails, take it to the school district office and threaten that you'll take it to the state. That usually gets people moving.

[CJR]

Update:

Hubby and I went to school this morning. We spent an hour "catching" teachers and nurses and aides as they headed in for the day. The office had asked us to get the Nurse's okay before handing out our flyer but the nurse wasn't due to arrive until a half hour after the teachers so...We handed them out anyway.

We spoke with every 5th grade teacher. And then we spoke with the Band teacher who (in her defense) said that before she reminded Shan of what was acceptable behaviour in band she asked if Shan needed to go to the Nurse. Shan said, "No, I'm okay." And so she didn't think it was seizure related. I explained that with Shan she occassionally gets unprovoked anger about 2 hours before the onset of a larger seizure and that if the anger is unprovoked that Shan always needs to go to the Nurse despite whatever she may say.

We then spoke to the nurse who okay'd the handouts (luckily since they were half gone). However, she did ask that next year we add a line saying, "Never send Shan to the Nurse Alone." Good addition for next year.

And then we found the aides. All hundled together in the copy room. I asked them if they had a minute to hear about Shan as she had recently been diagnosed with juvenile myoclonic epilepsy. Instantly the lunch aide said, "Is that why Shan wanders around the lunch room, even after she's told to sit down. She was always such a good girl but this year..." I told them yes, that it was seizure related. Another aide spoke up and said, "Why is she so nervous all the time now? She's picking at her clothes a lot." I explained that symptom. By the time we were done they were irate that the school hadn't informed them of any of this. They were talking about setting up new guidelines about how this type of information is distributed.

All in all it was both good and frustrating and time consuming. We spent over an hour wandering the halls. But we talked to everyone!

On a good note, I finally got the school to agree to a staff wide training day during a Fall '08 Superintendent's Day by our local Epilepsy Foundation Educator!!! Yeah, me! It kinda helped when I got my hands on a certain piece of info. In a school of 800 students (K-12) we have 10 with Epilepsy/Seizure Disorder. That's 1:80 ratio! Higher than the national average and higher than the 1:500 incidence associated with Autism. And then I pointed out they had mandatory Autism training. Again...YEAH ME!!!

And on a weird note, yesterday 4 students with seizure disorders/Epilepsy went home due to seizure activity. Students were varied in age, grade level, and area of the school they were in. So do you think it was a coincidence, the weather? Makes me wonder....

[tinasmom]

I am so glad that you made progress! It is very time consuming and exhausting getting people to listen to you. The picking of clothes is a symptom of a complex partial seizure, this is one of the things that Nicole will do when she is seizing. The next step will be to get her an IEP or 504. It's never ending. I have been trying to get the entire school district here seizure trained and I guess I will have to go to the newspaper because nobody wants to answer me. It's too bad that I will have to make the school district look bad compared to the smaller districts around us that have training every year.

[Bernard]

Sounds like you made a great first step.

[alivenwell]

Something caught my attention- the flute. A flute takes a lot of air. Maybe an easier instrument would work better. I played a double reed oboe which practically made me pass out. I then went to a bassoon, also a double reed, but a wider reed, which was drastically easier to play.

In my case, my parents took me for a psychological evaluation outside the school's intermediate unit. It was a psychiatrist. That person evaluated my IQ, behavior, ...you name it, he tested it. He then wrote a nice letter stating I should be treated like everybody else. Obviously the exception to the rule would be if I wasn't feeling well. In spite of that letter, there were many ignoramuses. Some teachers were cool about it. And, some were downright discriminatory. An IEP has to be really specific. My kid had an IEP. When they did not follow the IEP, we went straight to legal advice and the superintendent. We asked all teachers to email homework assignments, and we were allowed to keep every subject's text books at home.

In your daughter's case, it sounds like the teachers have to have a protocol with specific rules about how to react without treating you kid like a freak. I distinctly remember being severely mocked out for my epilepsy. Kids can either be really understanding or so incredibly cruel.

Go for the IEP and have it written in a lot of detail for each subject. Also, make sure the nurse is adhering to medication as written.

[RobinN]

Great that you were able to get your husband involved.
Your %'s have me thinking....

[CJR]

We asked all teachers to email homework assignments, and we were allowed to keep every subject's text books at home.

That's a fantastic idea! I hope you don't mind but I am stealing that thought and insisting on incorporating it into Shan's 504/IEP/Whatever I can get! The textbooks would make her life so much easier because she tends to forget them so easily. She has the work but no textbook...or vice versa. I've asked the teachers to make sure she writes every homework assignment down but as of yet no luck with that.

Thanks all for your support and continued encouragement. I don't know what I'd do if I had to go it "alone". As always, you all rock!

[alivenwell]

That's a fantastic idea! I hope you don't mind but I am stealing that thought and insisting on incorporating it into Shan's 504/IEP/Whatever I can get! The textbooks would make her life so much easier because she tends to forget them so easily. She has the work but no textbook...or vice versa. I've asked the teachers to make sure she writes every homework assignment down but as of yet no luck with that.

Thanks all for your support and continued encouragement. I don't know what I'd do if I had to go it "alone". As always, you all rock!

The IEP instructor collected all assignments written up in word documents and forwarded all of those documents to us. They included information about whether the assignments were turned in on time. And, the good teachers kept us informed of our kid's current grade. Some assignments had more weight than others, so it was important to know if our kid's grades went up or down.

We even were provided with the next week's assignments so we could work over a weekend with our kid, if necessary.

We got the documents on a weekly basis, but I suppose the IEP could be altered to get a daily status. Our district also had a homework hotline read by the students. I listed to that one a lot!

[brain]

Hold that train of thought there: I may or may not
have 'spied' something here ~ am I seeing in your
postings in reference to playing music is firing off
seizures with specific instruments?

If so, there's a strong possibility of:

Reflex ---> Musicogenic

Which can be a result of a frequency, hertz, pitch,
playing / listening; whether or not it's live, recorded,
or even inside of one's head (neurons misfiring).

--------------------------

I might be wrong; but Juvenile Myoclonic Epilepsy
does not result one picking clothes, wandering about,
mumbling/stuttering/jumbling words, etc - that's a
Complex Partial Seizure. It may be very well that
several different seizures may be occurring; aka
back-to-back ... if I am reading your postings properly.

If this is the case and/or issue; then you need to also
consult with the Neurologist / Epileptologist. It could
be that the medication(s) needs to be adjusted (too
high or too low) or the child needs to be re-evaluated
again for another EEG or video EEG.

(If I misread the post - forgive me, because in a little
bit, I'll be getting a new pair of glasses and be able to
see better, even with scrolling up and fonts blown up
it's still fuzzy).

--------------------------------------------

BUT CONGRATS on the break-through with the progress
with the School Staff and keep pressing on!

[Nenne]

Im sorry to hear about ur girl, when i went to school i had the same problem. My parents talked over and over again with the staff, i had some lovely accidents where the teacher told me in face that i was faking it, and fine i know how to provoke a fit but when u just broke ur arm its not like u can fake it!

But i remember one thing from school that was good, my parents got me a little black book, that after every lesson they wrote up what i needed to do to the next day and so on, it really did a difference. and then they got me a personal assistant and that was good, she made sure i was ok, she put the books in my bag and so on, its really recommendable!

And i hope ur girl will have better school days!

Hugs from Nenne

[CJR]

I might be wrong; but Juvenile Myoclonic Epilepsy
does not result one picking clothes, wandering about,
mumbling/stuttering/jumbling words, etc - that's a
Complex Partial Seizure. It may be very well that
several different seizures may be occurring; aka
back-to-back ... if I am reading your postings properly.

She is having back to back seizures. The Neurologist said possibly up to 60 a day. The majority of which are like hitting the reset button on a computer with very little (if any) visible signs. Over the long weekend we had a four day Ambulatory EEG which I'm still awaiting the results of. So, of course she had one of her worst days ever the day after the EEG went back! It was also her first day back to school after being out since Wednesday of last week. Similar to the day she had the tonic clonic in February. She had been out from school for a week then as well.

As for the flute, I hate to think about making her give up band and chorus because she loves music soooo much. And because she is not in PE at this time, and is unable to play sports (not that she has a real talent for sports anyways) but she does have a real talent for music. She was asking to switch to the Clarinet but I explained that it required more "wind" and would probably make the whole situation worse. At home she can play keyboard but that is not a band option at our school. And she never seems to have an issue with flute when playing solo. I wonder if the stress of the group practice or the variety of different instruments are triggering the seizures.

We do have a diagnosis of J.M.E. but I am going to call the neurologist today with the new info I've received from the aides at the school. We also have a sleep deprived EEG lined up for the end of June. Her med situation is still a slow wean from the Phenobarbital and a gradual increase on Depakote. So we are not at the full strength of any medication yet. And therefore, I believe I'm correct when I told the school that as of right now she is Uncontrolled. They said, "Well, by the time she starts next year she will be controlled." I explained that full control of seizures can take years if it happens at all. The common response to that is: "Don't worry. Once she has the right meds life will be normal again." Again that magic pill theory is very frustrating.

[skillefer]

Actually, you may not have to have her give up chorus. I have had 2 seizures that I swear were triggered by music. But for me, they both occured during/after violin concerts. It's funny because I can listen to recorded violin music and be fine...I just stay away from live violin music. Which was a pity. One happened during an Itzhak Perlman concert, right after a very fast piece.

Any way, as I was saying, you might not have to have her give up chorus. I think with me it was the pitch the violins hit. Most choruses don't have 1st sopranoes that are trained to hit those high pitches that violins can hit.

[Georgiagirl88]

Hi CJR,

I will keep Shan in all of my prayers. And your family as well..I can only imagine how hard it must be, as a Mom myself. I hope she starts feeling better and her seizures start to get under control.

Hugs for all of you!
Michelle