Fighting the School System

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efowler25

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Hello everyone I am having a few issues with my sons school system and how they are handling his epilepsy. If anyone has had the same problems or ideas on how to make it better I would appreciate it.


1) They refuse to allow him to have his Diastat at the school UNTIL he has had a dose. My concern is this- he spends 8 hours a day with these people I feel like the likely hood of him having one at school is high. I work VERY close to his school so I could make it in an emergency. But what if I am not at work?

2) They were REFUSING to allow him to participate in the normal PE, while the other kids were running laps he was told to walk. While the other kids were playing games he was told to sit. This was AFTER getting a letter from his Neuro dr releasing him to do as he pleases in PE.

3) He has been diagnosed for 4 weeks. 7 days of those four weeks he has been sent home for possible "signs" of a seizure. Oh and one of those weeks was spring break so technically he has only attended school 3 weeks. They are so afraid of him having a seizure on their watch.

I contacted the local Epilpesy foundation and they are going to see what they can do to help with the Diastat......But IM SO FRUSTRATED!!!!!!!!

Any Suggestions???
 
Hello efowler25

Warm welcome. So sorry to hear this. But all I can say, never but never give up and fighting for equal rights for you Son and seems you are in the right hands/headed right direction with the epilepsy foundation.

http://epilepsytn.pmhclients.com/index.php/advocacy/


How dare they act so cowardly, the school should have (some) trained people on site to help your Son?

Can you call the head of his school and insist that they work with you to make a plan of action in the event of a seizure and not continually be looking for one and if they say they see signs of a seizure then they can write down exactly what it was so you are completely clear of what’s going on. Your poor Son, they are even going against doctor’s orders and that’s pretty serious. Thats worth a school board call.

I would not accept this and would be at the school daily until a full plan of actions is agreed upon, if offical and well documented.
 
:agree:
Keep taking it to the next level, until you reach someone with some common sense.
 
Yes it is frustrating... and yet, if I might make a few suggestions.

It has only been 4 weeks... give them time to adjust to the situation. Schools have been sued for so many crazy reasons, we have to put ourselves in their shoes occasionally. However, with a 504 plan, you and your doctor make the decisions about what occurs at school and how you want them to handle any medical situation. It also protects them. So get that meeting ASAP !

Next, if I may suggest, do not be confrontational. This is a special time of your sons life, and if those that care for him are at odds, he will take it on as something he has done. So relax with it, if it takes a couple of months to figure out, let it be. Do not let them to make decisions that are not within your sons rights. Learn what they are, and kindly and firmly state them when you see something is out of bounds. If you can find one person that you work well with, use them as a filter. It was best for me when I trusted someone on campus to speak in my behalf. Also, praise those that are doing it right, and send the principal notes of thanks too. It makes all the difference in the world.

I hope you are working on an IEP plan as well.
 
He already has an IEP. He entered into the public school system in 2nd grade, he was private prior to that, and every teacher since 2nd grade has told me he was ADD or ADHD. I never saw that or thought that. After testing him at the advice of the school and his Primary care Dr. said he was just fine we tested him through I school psychologist and he was diagnosed with a reading disorder. His neurologist believes the "ADD" that the teachers thought they were diagnosing were actually absent seizures. I at no point have been confrontational with the school. And trust me when I say prior to the epilepsy there were MORE than enough opportunities for me to be. This school has always turned their nose up at us. We live in a very wealthy part of town and we are the bottom of that pay grid. We managed to find a great deal on a nice home and nothing more than that. So this goes deeper than just the current situation and I still have not lost my cool on them, although anyone else in my current situation would have in a HEARTBEAT.

The school has a licensed nurse on staff and his care should not be an issue. I should not be afraid every time I hear my phone at work ring that it is the school sending him home again. I HAVE to work it is not an option considering the multiplying medical bills that are still stacking on my desk. I have been as nice as I can be and I will no longer turn the other cheek, I appreciate the 504 plan and will look into it asap. Thanks for all your input.
 
Is there another school option at all? My son doesn't have epilepsy but he does have special needs. The first mainstream primary school had never dealt with autism and even though my son is on the mild end of the spectrum he was still too much for them too handle. I only ask because if this isn't the only problem you have had within the school, it may be worth looking into other options (if there are any. I will admit, I have been very lucky with his new school)
 
We are being rezoned however it is to a school 20 minutes farther away. So not sure what the least of the two evils will be!! It has been a nightmare trying figure out what is in his best interest while ignoring personal feelings!!
 
Hello efowler25

The school has a "licensed nurse" yet solution is to send him home with minimal explanation?

Have you tried calling a meeting with nurse/teachers/school head and if at all possible a recommendation from the Epilepsy foundation of whom else could/should attend (to support you) to help make official plan of action?

Why you should have to pull him out of this school, I would think in all fairness that they need to step up to the mark and help out here.
 
I'm not sure if you'll read this, but you should be aware that due to IDEA (a federal law that protects children with disabilities from being discriminated against) what your school is doing is illegal. They must provide a free and appropriate education (FAPE) in the LEAST restrictive environment. They are restricting him and sending him home?! Completely absurd! Public schools also can not mandate a student take medication, nor can they refuse to give a student medically required medication. If a child has more medical issues than they can safely provide for, they are required by law to hire someone who can meet his needs (however, they are more than capable of meeting his needs, they just need to be more educated). I work in special education in public schools in NH. Some of our students require a nurse to be assigned to them, one on one, throughout the entire school day so the student can access their education (typically a student who needs a nurse is one who needs specialized medical care, such as catheterization, tracheotomy and suction, frequent O2 checks, etc). It sounds like your son's IEP needs to be ammended to include the seizure information. The school needs to create a medical plan, that explicitly states what they are looking for (signs of seizure) and sequentially list what their response should be with each given scenario. You may need to sign a medical release for the school to talk to the neurologist so they can make the medical plan. If they fail to do so, you can file a grievance and go to court (due process). In NH, we (special education) are mandated to give parents a copy of their rights prior to every IEP meeting. Not sure if giving special education rights handbook is a federal or state law. (BTW 504 plans are for students who don't have an educational disability, but maybe just need accommodations. Sounds like your son needs an IEP due to learning/reading disability, much like my 8 year old daughter). Good luck!
 
Wow what a sad story. I am very lucky that my sons child care is at my work and he attends with my older 2 children. I have almost the opposite worry that they are to comfortable with his condition and don't notify me often until I pick him up that something happened. He had a series of events around 3 weeks ago where he could not focus or walk when he woke up and kept stumbling and falling he then stayed grumpled in a heap for quite awhile, it looked like he was having a seizure and was going in and out of it for over 10minutes. His carers videoed this which I am very thankful for but they didn't ring the school nurse, I work at a school. She was horrified when she saw the footage saying how could they possibly think that was OK! As they don't know what is causing his events and they alter she said she felt nervous that he may have needed urgent medical attention and they are not qualified to give it.
In saying all that I really think it would be awful if they treated him differently due to his condition. Originally I was looking at another child care centre for him as my work one didn't know if they had room for all 3 of my kids when I returned to work and i wanted them to be together. I rang another centre and they were fine until they found out about his "condition" then suddenly they said they had re checked their placement list and they had spaces for the older two kids but not for him!!! Interesting. If they had said it was due to his condition I could have fought for equal opp. they worded it very cleverly as so they "legally" had done nothing wrong!
Good luck with it all. I know all we ever want is for our kids to be treated normally and those looking after them informed enough about the condition so they are comfortable and know, as I say, its just something my son does not who he is.
Take Care.
Donna
 
We have decided to send him to the new school for a "fresh" start. Even though it is 20 minutes farther away than the current school I believe ne needs that fresh start. This is his last year in elementary school and bless his heart he needs a normal year. The school system is refusing to budge on the diastat and epilepsy foundation has told me that is their right and they are not breaking any laws :(

We have decided to send him to Carpe Diem. A summer camp for children with epilepsy. It is 5 night sleepaway camp that will allow him to be 100% "normal" while meeting children just like him. Between camp and the new school we are very hopeful for a new start this school year!!! The school is still underconstruction so as soon as the office is open my plan is to set up a meeting with the nurse. Allow myself to lay my expectations of the school and allow her to lay out her expectations of us. Hopefully a good line of communication will be all we need.
 
Wrights law

I'm glad your ready for a "fresh" start and hope things go well. Not to argue, but unfortunately the information you've been given is wrong. If this is a public school they cannot refuse to give medication, even rectal medication. They must have a health/medical plan (I suggest taking a copy to your neurologist for approval first) and it should be incorporated into the IEP. Here is a link you may find helpful, particulary page 29 question 3.4Q. I know its difficult. I'm fighting with my daughter's school over different issues, but even if they agree to provide her with what I feel is appropriate, I will now always wonder if they will be nice to her, or hold a grudge because I am not letting up.

Ug, I can't add the link because I'm too new. But if you google wrightslaw epilepsy in schools the link should come up as a pdf. file. It's a lot of info, but as I said 3.4Q on page 29 deals specifically with diastat and similar rectal meds.

Sorry if I am being overly bold. I am frustrated with my daughter's school and I am tired of having to fight for rights. These things have already been tried in court, and no public school should try to make me or anyother mother feel like an irrational, overbearing parent, just because they want their child to have the same rights and access to education like everyone else!
 
You are not being bold at all, just informative. What I was told by the epilepsy foundation of my area is that they have a right to refuse giving the first dose of these meds for a fear of adverse reactions. Our neurologist disagrees with this and is wanting to provide me with the appropriate methods to fight it. However we were supposed to have our 3 month check up on Friday and due to a medical emergency on the Doctors end we were cancelled by his office and were not given a new date. I was told we would be called. Now we are waiting to hear back from them to reschedule and when I called attempting to reschedule they told me it would be December and to wait for someone to call me.....so I feel your frustration 100%.......I am stressed to the max with all of this and I have NO IDEA how so many of you on this forum have dealt with all of this for so long. I really feel at my breaking point and my will to fight on all of this is dwindling!!

Sorry for the vent but I am at a low right now.....we were really really looking forward to this appt. Since his diagnosis he has had his keppra increased twice. And he has the horrible "twitching" fits at night. From what i have read they seem to be myoclonic jerks...but I dont know and Im frustrated. I want to see the Dr sooner rather than later......I want answers and Im Tired.....just tired!!


Sorry for the vent.....and thanks for all the help!!
 
Please, don't be sorry for venting! The whole system is very frustrating (I'm on both sides of the public school- a parent of a child with a disability and I work in special education)! I live in New Hampshire, so I am lucky so have a whole slew of pediatric neurologists to choose from, between Dartmouth Medical hospital, all the top-notch doctors/hospitals in Boston, and the pediatric neurologists in the many satallite offices. Sometimes it can take a while for an appt, but December seems a bit excessive, especially since they cancelled. I usually ask to be placed on a cancelation list, for them to call me if an appt. suddenly opens up. Sometimes telling the front office that your child seems to be having what looks like seizure activity can get you in sooner--or at least a phone conference with the doctor (better than nothing). You could consider taping your child's sleeping episodes and emailing it to the doctor, too. --Also, the link that was provided is a Federal law, so it doesn't matter which state you live in, it has to be followed. The school needs to develop a health plan for a potential adverse reaction. its pretty standard here, but maybe with all the medical schools around and some of the best hospitals in the country so close by, we might be more educated and more used to it?

I completely get the tired thing! Its all so draining-emotionally, mentally, and physically! Even though this is often a rollercoaster of a ride, know that there are times of rest ahead.
 
I went through similar issues but at the hugh school level. You must have a 504 plan that is what protects you and the school on the medical needs.
 
My parents told me they had a hard time with me and my epilepsy in school too. I tested above the levels for special education resources, but because I was diagnosed with epilepsy and my parents provided a doctors note saying I did have epilepsy, the school couldnt tell me no when it came to helping me with tests, or having them read to me. I understood things better if I had someone read me the question, or by a video rather than myself reading it. I remember being told I wasnt going to be going to resource, which was the special ed area any longer during the day. But If I needed help with tests, quizes, etc in classes, I could go down there anytime I needed. I did go there alot. I hope things can get straightened out. I know how tough it can be. If you have any questions, feel free to ask, I may be able to help!
 
Actually, Kristin, If you don't mind, I have questions regarding your temporal lobe epilepsy. My daughter is not diagnosed with a seizire disorder, but we are just beginning the process to rule it out. Last year the school psychologist said she seemed to have symptoms of temporal lobe disorder. The neurologist at the time said she didn't have signs of seizures and probably just had developmental delay. Fast forward to a few weeks ago... My daughter started hearing the music to the ice cream truck, on and off, even though it wasn't there. She knew it wasn't there and it scared her (me too). It took a little time, but she calmed down and went to sleep (it was bedtime anyway). My daughter is ALWAYS tired, even after 12 hours of sleep. She falls asleep during school and they let her take naps in the OT room (she is in second grade). She frequently forgets things that she has learned, especially new things, and often remembers events that happened a while ago, but is certain they happened that day. She gets "tickles" in various parts of her body (typically her "privates") for no known reason, and is diagnosed with GI reflux due to frequent stomach complaints. She has the attention span of a gnat, but the school psycologist didn't think she had adhd. I know every one is different, but do these symptoms coincide with your temporal lobe seizures?
 
We had the same problem with the school sending our child home about twice a week because they thought he "might" be having a seizure. At that point in time, he was having Grand Mal seizures -- it's pretty obvious when someone's having a Grand Mal seizure. But anyway, he never actually had a seizure at school -- they were almost always at night or upon awakening. But on the days he really had a seizure, he would be so "out of it" and headachey, that we kept him home -- so between being sent home for non-seizures, and being kept home for real seizures, he missed about 40% of the school year. The following year he attended a different school, and his teacher and nurse there were more familiar with seizures, and he was never sent home at all (except for illness).

We never had an issue with the Diastat -- and actually, he's never been administered it, although we kept it at both home and school. He always came out of his seizures within 3 minutes. But I can see that might be an issue if there's a fear of an allergic reaction or something. But on the other hand, if he doesn't come out of a seizure, that could be as grave as having a reaction to the diastat. So...maybe the new school won't make it an issue.

For P.E. he should be able to participate fully -- he's entitled to that by law, the least restrictive environment, as mentioned above.
 
I just got done viewing videos on the ketogenic diet. It made a huge difference in one kid who did not react well to any medication, surgery or alternative therapies.
http://www.charliefoundation.org/faq/ketogenic-diet.html
is a good link to view if you want to know more about it.
If the IEP enforces this diet and seizures disappear, that would be a new lease on life at such a young age.
 
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