Twinkle Toe Shoes cause epileptic seizures?

[Jaime4004]

I agree with what you said except a note from a parent would not do it for me. IMO a school should not have to create a policy or ban an item on a note from a parent.

There are far to many whack job parents out there. I've met them, dealt with them and was raised by one. I want facts, supported by studies with rock solid proof. Its not about a pair of shoes to me its about having my life impacted because of a whim of another and yes I view this subject as being a whim of someone. Substantiate that whim properly and I'm a huge follower of rules. Make it up as you go along? I don't think so, not to me or my kids.

If parents want an accomodation then they better darn well go thru the proper channels.
Harsh, maybe, but as has been stated/asked over and over and no one has really answered, where do we draw the line? I draw the line at unsubstantiated, unproven, conjecture, assumptions and suppositions. A bunch of people on a message board who "have a friend" a "coworker" or "know/believe that......" is not supported rock solid proof to me.

I agree that a note from the parents shouldn't cause a new policy or a ban. To me, it would be a nice request from other parents not to bring in an item, voluntarily, that is causing a real problem. IMO, the crazy whack job parents are not writing nice notes, they are usually the ones demanding all kinds of policy changes. I have received notes from teachers that are generic, while still letting you know the problem. "We have a child in the class who, blah blah blah."

This thread had been so entertaining to me! I would like to thank you all for helping me procrastinate...

 

[Hannathy]

And no note in the backpack forbidding them in school by everyone? Plenty of time to have sent one home to the whole school today, soooo it must not be that important for the safety of the children so Mine would have them on Monday.

 

[The Mystery Machine]

Light up shoes were always against the dress code in the many schools my kids attended. Surprised that it is not written in your dress code. I guess they will make it a policy soon enough.

So you buy another pair of shoes for the kid for school. I don't see the big deal.

If you want to go against the school over shoes then I guess you could but I would not do it unless it is the teacher that is trying to enforce it and other kids are wearing the same shoes in the school.

 

[Hannathy]

If you want to go against the school over shoes then I guess you could but I would not do it unless it is the teacher that is trying to enforce it and other kids are wearing the same shoes in the school.

BINGO!! That is exactly what is happening here. All the other kids are wearing them and only her DD has been told not to.

 

[mamacatnv]

Light up shoes were always against the dress code in the many schools my kids attended. Surprised that it is not written in your dress code. I guess they will make it a policy soon enough.

So you buy another pair of shoes for the kid for school. I don't see the big deal.

If you want to go against the school over shoes then I guess you could but I would not do it unless it is the teacher that is trying to enforce it and other kids are wearing the same shoes in the school.

So far this has been the case - the OP has seen several pairs since this all started a few days ago

 

[SandrA9810]

If the OP wouldn't be grossed out by it. I wonder what would happen if the daughter lent her shoes to a friend in the class to wear one day. Would she be sent home as well??

 

[dzorn]

according to the epilepsy foundation , many factors must combine to trigger the photosensitive reaction. heck what you told us without your dd shoe could have cause a seizure..Sunlight through a window is trigger especially with her overhead lights being off

Yes but if these things normally did not trigger her seizures then the out of place thing the shoes could have.

Well OP even when someone witnessed it still people are not going to believe it.

Denise in MI

 

[Hannathy]

Yes but if these things normally did not trigger her seizures then the out of place thing the shoes could have.

Well OP even when someone witnessed it still people are not going to believe it.

Denise in MI

The woman you are referring to was having 3 or more gran Mal seizures a week even with all the changes that had been made. Her seizures were out of control there was no way they could know what was triggering hers. She is not a good example of the usual triggers. She is probably a 1 in a hundred thousand example.(don't quote me on my numbers I simple meant she was way way out of the ordinary)

 

[The Mystery Machine]

BINGO!! That is exactly what is happening here. All the other kids are wearing them and only her DD has been told not to.

If that is the case, I would go toe to toe with the principal and leave the teacher out of it.

 

[Luvchefmic]

I agree with what you said except a note from a parent would not do it for me. IMO a school should not have to create a policy or ban an item on a note from a parent.

There are far to many whack job parents out there. I've met them, dealt with them and was raised by one. I want facts, supported by studies with rock solid proof. Its not about a pair of shoes to me its about having my life impacted because of a whim of another and yes I view this subject as being a whim of someone. Substantiate that whim properly and I'm a huge follower of rules. Make it up as you go along? I don't think so, not to me or my kids.

If parents want an accomodation then they better darn well go thru the proper channels.
Harsh, maybe, but as has been stated/asked over and over and no one has really answered, where do we draw the line? I draw the line at unsubstantiated, unproven, conjecture, assumptions and suppositions. A bunch of people on a message board who "have a friend" a "coworker" or "know/believe that......" is not supported rock solid proof to me.

I agree with you...when / where does it end ? Seems like everyday there is a new issue somewhere that people want everyone to bend over backwards for them..I feel the same way about rules.

 

[onescgirl]

It has taken me some time to caught up reading the past several pages. I've tried to answer several questions.

I actually do think that since there were more children that had the shoes on kind of adds to the validity of the reason that OP was given. Obviously, the nurse was dealing with an issue that had been brought up on the fly. There seems to be a genuine situation that someone is concerned with due to a medical issue. In this instance, I would completely err on the side of caution. Why should this whole situation be escalated further if it does not need to be? The OP seems to have a beautiful family with strong ties to their school (*waves Hey OP, I checked out your TR). I would not rock the boat on this and just save the shoes for days when the child is not at school. I do think the shoes are distracting, but I would first and foremost try and accommodate the medical issue.

Hi Tinkh, thanks for visiting my PTR! I wish my PTR was a popular as this thread!

Little Bobby has an accomodation to allow his seizure dog to go to school with him. Little Jimmy in his class and other children in the school are allergic to dogs. Who wins? Would someone please tell me where we draw the line? Who decides whose needs are more important? Again, if there is someone having seizures because of OP's daughter's shoes, THEN THE WHOLE SCHOOL NEEDS TO BAN THE SHOES, not just for one person. Why can't someone at least concede that point? And again, who says it's a student? I might very well be an annoyed teacher who is distracted by them who just doesn't want them in her/his class. This seems more likely since the school is only asking one person not to wear them.

That was part of my original post. Not sure if it's legit from a student.

Light up shoes ARE a novelty product. Tennis shoes are not. You can get tennis shoes for $12.99 at Target and they will do the same job as $45 canvas light up sneakers.

No one buys twinkle toes because they are a fabulous sneaker. They buy them for the attention getting, novelty lights. As someone else mentioned... the actual shoe quality isn't even that great... especially compared to your average $45 sneaker.

BTW the OP isn't even making as much a stink about this...

You are right. I don't think any kid picks out shoes for quality, it is always looks. My daughter picked out these for the lights, rhinestones & metallic covering. My son picked his out just because of the shocks on soles.

My DD8 wanted these so bad and I finally got them for her at Kohl's, on sale, with a $10 off coupon and my grandma bought them (senior discount) on her Credit card (with a shopping pass, 15% off) and in the end I paid $10 and since we bought other things we got some of that back in Kohl's Cash.
I was so proud of myself. Anyway, I wonder how this will play out in our school. Either way she will have them for all other times (she can't wait to wear them in Disney.)

Great deal!

No one, I assume. Nobody has to. Legally the school has to accomodate the child with the medical problem. There is no law which says they have to accomodate the child who needs new shoes. If someone uses their entire shoe budget on a novelty product which their child is then not allowed to wear at school, maybe they can find a charitable organization to help them acquire replacement shoes. Or maybe the school would be okay with the student wearing the shoes as long as her parents covered the lights with duct or electrical tape so the flashing isn't visible, as several posters have mentioned.

I do not think regular tape would stay on the shoes all day (think gym, recess) and if it came off, then my daughter would be doing something asked not to do. So, I do not think tape is a solution. I am not putting duct tape on any shoes unless I want the duct tape to stay there forever because that's what would happen.

Just found this thread, haven't read any of the replies, but I want to share a true story with you...

I worked with a woman for 9 years who had severe epilepsy. At least 3 grand mal seizures a week. We could not even turn on the flourescent lights in the office because they set her off, so everything was lit by table and floor lamps.

Anyway, one day I brought in my 2yo daughter who was wearing her light up tennis shoes. She walked past my coworker who had enough in her to groan..."the shoes" before she dropped into a grand mal seizure right in front of my child. My DD was of course terrified and screaming, I was trying to get ahold of my coworker and get her away from her desk (all we could do during the attacks was try and protect her from herself, really).

I just wanted to let you know that ABSOLUTELY flashing light shoes can be a health hazard to those with epilepsy. To the OP, I am sorry your school did not have it in writing somewhere that these shoes were not allowed, likely they had never run into this situation before. Hopefully now that they know this will prevent another family from going through the same problem.

Maybe you have to have a severe case of epilepsy like this for the shoes to affect?
I know we do not have any children at our school that have epilepsy this severe to have several a week. Children this severe would have to wear protective headgear at school & most likely would be attending a 'Special Center' school.

Its a rather clear example of "just because you can, doesn't mean you should". Requiring the rest of the school be subjected to a ban when the issue exists in a particular classroom is over kill.

I can and do concede they probably will end up banning them just for the distraction alone. However, this is where I end up on the other side of things. My son's peanut allergy is something we try and handle within the smallest range possible. Concessions do need to be made for his safety. I am truly grateful for all the years that the other parents and students have accommodated our family with this problem. When you end up with school wide bans etc. people go off saying that the world is too this or too that and not everyone can be protected etc. Well, this is the perfect example of how things escalate. Let's assume that there is a real medical issue here. The parent, teacher or student does their best to get reasonable accommodations within the smallest range possible to try and keep the issue to a minimum. Then, lets say Susie Q's parents decide to throw a fit and say if their kid is affected then all should be. Who is snowballing the scenario? The parent trying to make the least amount of fuss as possible? Or the parent who is demanding their child have equal treatment rather than using this as a teaching lesson that we sometimes make sacrifices to better the world for those around us. The OP has stated how loved her children are at this school and how she has relationships there. Maybe the school felt that this would be an issue that could be easily accomplished without EVERYONE who has the shoes having to suffer. That is exactly why things get out of control. You can't have it all ways.

Did I state this? I was thinking I stated that I loved the school, kids, teachers & nurse. But, yes, I do think my kids are also loved at this school.

Others should know about the shoe ban in the classroom & school before parents go & buy the shoes. Christmas is coming, what if 5 more girls in the class get Twinkle Toes from Santa?

I can't speak for the others but most of the argument isn't even about the shoes. It is that many people are tired of the schools over stepping their role. Of them making decisions based on hearsay and fake science. of over compensating, of going to unrealistic extremes, inconveniencing hundreds for the sake of 1 and without even hard evidence or necessity. Of their attitude that they can do no wrong and that we should never question them because they know best, just shut up and do what they want. Of their rushing to conclusions before time has been taken to investigate and set up reasonable boundaries or rules, of changing the rules as they go and not applying them equally. Do I need to continue?

The dress code was established and adopted by the school board, parents bought accordingly. If it needs changed I'm sure there is a procedure in place-follow it! Just as they would make a parent do. It is an administrative decision not the nurses job, she should have reported it to the principal and let them take the proper steps. These shoes have been around for years, I'm sure the child or teacher in question has been exposed to them before if they were a problem the parents should have approached the school before this and got it written into the dress code.

As far as the distraction fine then either deal with the problem, kids acting up don't take the easy way and blame the shoes. And if they are distracting to the 5th grade class then they must be distracting to the other classes also and shouldn't be worn or if they aren't why can't the 5th grade teacher control her kids and the others can. These are all questions that need addressed and weren't when the nurse took it upon herself and beyond her role to single out and call the OP.

Another angle that was briefly brought up way back when and hasn't been discussed is if the OP's DD is the only one in class with these shoes how do we know the child who complained isn't just jealous and if they can't have them don't want the other girl to have them. I've dealt with to many kids over the years to ever doubt the level some kids especially girls will stoop to to get there way or "punish" another child. They can be very nasty little creatures and I've known some chronically ill children that learn early on how to "work" their illness.

My DD said she is the only one in her class that had these shoes.

So you'd rather they waited until they actually saw the kid have a seizure or get a migraine in class because of the shoes, and then start the process to ban the shoes, and wait till the rule becomes official before they try to get the shoes out of the classroom? That's one way to go about it, I guess. Or they could tell a parent that the shoes can cause a medical issue for one child and to please leave the shoes at home, and hope that the parent will be reasonable about it and help them out, as they appear to have done in this case. Then again, maybe the kid would just be faking it so I suppose they just need to tell the kid with the problem to suck it up and deal with the shoes. Seriously, though, maybe they aren't basing this on heresay and fake science. Maybe they do have evidence that this kid gets migraines from flashing lights, as I do. Or maybe her doctor has verified that she has a history of seizures brought on by flashing lights. You certainly can't be sure that they don't have evidence, and legally they couldn't show you or tell you if they did.

Oddly enough, it seems many people object to the fact that they aren't inconveniencing hundreds for the sake of one. Someone with a child who needs accomodations explained why they chose to inconvenience as few people as possible, and I mentioned possible reasons why the school might ban the shoes from only one class, but it seems many on this thread want everyone to be inconvenienced if their little snowflake has to be.

And now I'm off to bed, since lack of sleep also tends to contribute to my migraines. As does beating my head against a brick wall, which is what posting on this thread is starting to feel like. Goodnight all.

I don't think anyone should be inconvenienced. But, if it is a legit case, all parents should know about the sparkly shoe ban. It would prevent others, like me, to buy the shoes in the 1st place. Then, others would not be inconvenienced.

Does anyone know (OP?) if the nurse made a unilateral choice to call you or was she acting upon orders from the administration (principal etc)?

Just because the call came from the nurse doesn't mean she was the one calling the shots, and frankly I'm surprised that THIS is the bone of contention many people are hanging on to. It would never have occurred to me that the nurse was the one calling the shots...just the unlucky one who got to call the mom.

I did not ask the nurse who made the decision, so I do not know the answer.

You also don't know if those children were wearing them the day before. It may very well be that a note will be comming. Depending on the letter if it going home to the whole school it may need to be approved by the board office.

Denise in MI

Maybe they did and the parents of the children still wearing them have attitudes like these..."If it were my kid they would be wearing their blinkie toe shoes " "And she would be wearing them until I saw it in writing and it was school wide. " "Until a note came home stating that those shoes were banned from the school I would let my dd wear them."...

There is no evidence that it was a teacher that was annoyed. The OP said that the nurse called. Are you saying that the nurse made it all up to cover for the teacher?

This past school year the school banned 'Silly Bandz'. There was an automated phone message that was sent out to every parent from the principle telling of the ban & to not send your child to school wearing Silly Bandz.
Based on how the school handled that, I don't think phone calls were made just to the parents of children who are wearing the 'Twinkle Shoes'.
If there was a school-wide ban, I think we would get another automated phone call to prevent kids from wearing them instead of waiting until each child came to school wearing them & then call their parent.

I have to agree and disagree. I agree migranes can be brought on by anythin. I have only had a couple in mmy life but I come from a family who gets them severaly, especially my grandma. She has been hospitalized many times because when she gets a severe one it resembles a stroke and while she in her gut knows it is not, the doctors have told her to not ever assume it isn't cause that one time it could be (kind of like her body crying wolf if you will.) But her 2 biggest triggers are flashing lights and the color red. Red for her is the worst. Our Macy's has red carpet and she can't go in there, it hits almost in an instant. One time on vacation our car broke down near Vegas and the whole hotel was red (and BTW had flashing lights.) We had to stay cause it was a Sunday and they couldn't fix the car till the next day. She had to go in with us leading her in eyes closed and stay in the room totally dark and just sit, in the dark to not get sick. Unfortunately in the morning when the sun came out it was light enough that the red got to her and she wound up getting one anyway, thankfully it wasn't too bad and we got her out of there as soon as we could. So I don't for a minute question that weird things can trigger a migrane and I assune the same for seisures.

I disagree though, I think these shoes are adorable and that is why I got them for my DD. However, as I said a few pages back if we are asked not to wear them at school she won't, but she will still wear them out till they are worn out. Lucky for me, they didn't bother my grandma cause she will be in Disney with us and DD8 can't wait to wear them there.

I think my DD will enjoy them at Disney next month too!
I'm glad to hear that even though your Grandma's migraines can be brought on by flashing lights, that these shoes do not bother her, and your daughter can enjoy them at Disney!

 

[onescgirl]

Duplicate thread

 

[PenguinWaiters]

I find it interesting that on the one hand people are complaining that accomodations are getting out of hand while at the same time insisiting that if there is a ban that it needs to be for everyone.

It sounds to me like the medical issue exists in the OP's DD's classroom and that the school is trying to address that without going overboard by simply eliminating the trigger just in that one room rather than implementing a school-wide ban. I would think that people would be on board with the school trying to balance this but maybe not. Heck, maybe the whole town should ban them - have we done a town-wide count yet?

It also occured to me that the medical issue could be the teacher or an aide or someone associated with the room - I seem to recall that the OP didn't think it could be one of the students as she knows them all. However, this thread is so long maybe I messed that up.

My oldest DD is starting K later this month. I rely on the DIS to keep me up to date with all of the perspectives I should expect to hear over the next 12 years. I actually got into a fight with my DH over the shared vs. individual school supply thread that popped up last year. Who knew he had such strong opinions on that

 

[klj27]

I love how we are getting so defensive about this situation while the op is remaining level headed, getting the facts, temporarily following the request, and not assuming.

I am very interested to hear what else you find out about this sitation. I agree that informing the other parents in the class so they don't buy the shoes also would be very considerate.

 

[Hannathy]

OP Just clearing up my one quote you pulled out about misbehaving. Please yes I know your child isn't misbehaving that isn't what I meant. I was replying to all the "well the shoes are a distraction, all the kids do is kick and fidget". My point was deal with the misbehavior don't just blame it on the shoes, they (the shoes) aren't misbehaving the wearer of the shoe is so deal with the child.

Good Luck finding out the story on Monday.

 

[Disneyadore]

Because if you have been to schools lately you would see that there are 9 million nutjob parents who think their kids need all sorts of accomodations for every imagined ailment under the sun. One of my kids had a child in school that nobody was allowed to look at! That is insane! There was nothing wrong with this child except they had overindulgent parents who let the child rule the roost. Before anyone starts in the whole "How do you know" nonsense- I knew it for fact. There are tons of kids like this. Whatever the kids says is law to the parents. Did your parents cater to your every whim? I would bet that they didn't. Nowadays you have parents who want their child to never have to suck it up and deal with anything. Sure there are kids who are really ill or need accomodations but when every single kid has a problem you tend to not believe any of them anymore. We are creating a generation of selfish whiners. YMMV.

And these are the same parents that later will call int the office to tell the boss that "snowy" is to ill to work.
A whole generation of spoiled snowflakes is growing up and in the long run those same over protected children will be those that will refuse to work or tribute to society.
That will be the ones that will support the "when you are old you get a injection because you are the UNPROFITABLE ONES.

 

[The Mystery Machine]

I find it interesting that on the one hand people are complaining that accomodations are getting out of hand while at the same time insisiting that if there is a ban that it needs to be for everyone.

It sounds to me like the medical issue exists in the OP's DD's classroom and that the school is trying to address that without going overboard by simply eliminating the trigger just in that one room rather than implementing a school-wide ban. I would think that people would be on board with the school trying to balance this but maybe not. Heck, maybe the whole town should ban them - have we done a town-wide count yet?

It also occured to me that the medical issue could be the teacher or an aide or someone associated with the room - I seem to recall that the OP didn't think it could be one of the students as she knows them all. However, this thread is so long maybe I messed that up.

My oldest DD is starting K later this month. I rely on the DIS to keep me up to date with all of the perspectives I should expect to hear over the next 12 years. I actually got into a fight with my DH over the shared vs. individual school supply thread that popped up last year. Who knew he had such strong opinions on that

Here is my response to that...tough crap. Every school my kids have been in they have been banned and not because of seizures but because they are a distraction.

Teachers cannot single out a student in the classroom and then enforce rules on them that others in the school do not have to follow.

While you may not like that, that is the deal with public school. It has to be "official" for it to work in the end anyway.

If truly this was causing seizures in a child then the whole school district would have to ban the shoes.

Frankly the burden lies on the child with the seizures to prove their case with the school district. While it may seem "cruel" that is the reality of the "school".

 

[daughtersrus]

Maybe you have to have a severe case of epilepsy like this for the shoes to affect?
I know we do not have any children at our school that have epilepsy this severe to have several a week. Children this severe would have to wear protective headgear at school & most likely would be attending a 'Special Center' school.

I only have a few minutes so I haven't caught up from yesterday.

I did want to point out that not all seizures are grand mal. Someone could be having a seizure and you wouldn't even know it even if they're sitting right next to you. My DD has staring spells.(complex partial) We saw them for over a year and had no idea that they were seizures. We thought that she was just "spacing out". I had no idea that seizures could also be staring spells, muscle twitches and loss of muscle tone.

http://www.epilepsyfoundation.org/about/types/types/complex.cfm
http://www.epilepsyfoundation.org/about/types/syndromes/childhoodabsence.cfm
http://www.epilepsyfoundation.org/answerplace/Medical/seizures/types/partialSeizures/

 

[Wishing on a star]

Every school my kids have been in they have been banned and not because of seizures but because they are a distraction.

Teachers cannot single out a student in the classroom and then enforce rules on them that others in the school do not have to follow.

While you may not like that, that is the deal with public school. It has to be "official" for it to work in the end anyway.

If truly this was causing seizures in a child then the whole school district would have to ban the shoes.

Frankly the burden lies on the child with the seizures to prove their case with the school district. While it may seem "cruel" that is the reality of the "school".

Again, MM totally nails it.

 

[Wishing on a star]

I did just want to add, about the so called 'months' it can take to have an IEP in place.....

NOT necessarily true....
Yes, as a parent of a child with some learning disabilities, I know, that it can be a complete ongoing nightmare to get any meaningful ACADEMIC accommodations or services.

But, this would NOT be an IEP.
This would be a medical necessity....
Possibly a 504 at most....
All this would take is a legit physician's report/request/excuse.

If a child had an accident and had broken their leg, a medical concern, they would IMMEDiATELY be excused from running the mile run in PE. They would immediately be given excuse for reasonable tardiness due to extra time needed to get from one class to another across the school, etc....