Don\'t Tell Policy ??

Author:
Updated:
Original:

I am curious ... I believe that FAN recommends that school staff only (not students) be informed who has life-threatening food allergies. This is to prevent alienation/ridicule by other students and privacy, I am assuming. Do you agree this "don't tell" policy is best? I read this is one of their newsletters.

On Apr 13, 2000

Thank you for bringing this topic up. I have thought about this subject a lot over the past few weeks after reading about how other parents of PA children retell stories of their children's alienation.

My son is not quite 2 yet, so school is still not quite in my sights yet. The logical part of my brain tells me to inform all the teacher, nurses, principal AND classmates of Joe's condition. But deep down, I don't think I want his classmate's to know, at least, not after the third grade level (if I chose not to homeschool)..

Do all of you remember how difficult being "different" was when you were in school? If you weren't the one being tortured, do you remember the one classmate who was constantly picked on? School was a nightmare for me. School was a nightmare for my friends who chose to be seen with me.

And the children who were chronically "sick?" Who carried medications? Who had braces or crutches? I've seen 9 years olds have nervous breakdowns because of the constant abuse.

To tell or not to tell? I respect the decision of the parents who chose to tell classmates. I respect the decision of the parents who don't want to tell.

On Apr 13, 2000

I feel the way Lola does about this. Right now, 5 year old is in preschool and it is very important that everyone around him know about the allergy. Because of the young age, he requires strict supervision at mealtimes and there is no way to do that without the kids knowing. Even in the younger grades, it will be necessary for him to sit at a separate table from the kids eating peanut butter. I probably don't need to tell you how sloppy these kids are at lunch. My 3rd grader (no allergies) comes home at least once a week with some sort of "lunch" on her that some kid has spilled or dropped. So, while I may not want the other kids to know, I think it is important for safety. Once they get into middle school; however, that need changes and I think keeping it hidden might be best. The kids are too mean at that age. Christine

On Apr 13, 2000

Of course on the other hand if you tell the classmates up until middle school, these same classmates will be in middle school with our children. Seems like it would be hard to keep the allergy secret. And while it is true that kids at that age begin acting more cruel than before, it's not the case for the majority of them. Usually only a handfull(yes I know, that's all it takes to make life miserable). It's possible that if we were all upfront about PA then our children wouldn't seem as "different" as it would appear(currently there are about 6-8 children in my daughter's school with PA that we know about). Also there are a number of possibly serious side effects of hiding the peanut allergy from classmates. One, if your child is having a reaction and there is no teacher around,which can happen more often than you think, the other children will be clueless as to what is happening and it could cost precious time. Two, just indirectly pointing out that a peanut allergy is something to hide is enough to make a 11-13 year old think it is something to be ashamed about. Three, if you do manage to succesffully hide the allergy from the other children it opens up a whole can of worms. For example the ever dangerous "peer pressure". In the attempt to cover up the allergy would your child eat an unsafe food? If a classmate offered a home baked good their mom made, how often could your child turn them down? Imagine a well intentioned classmate saying "cmon just have a piece, my mom's a real good cook..." or worse "why don't you want a piece of my snickers bar?..." Whew, I could go on and on but it almost seems like a damned if you do,damned if you don't situation. You can see the good and bad in both options, something me and my wife are sweating over right now since our daughter ,9, will be heading to middle school all too soon.

[This message has been edited by Greg (edited April 13, 2000).]

On Apr 13, 2000

My daughter is in K and her classmates all know. The teacher, when she feels the need, educates them on how serious PA is. I feel fortunate that she goes to a small K-12th grade school. So, these kids will be with her throughout school. I know they are still young, but several of them have had their parents call and check with me about the snacks they bring so Jenna can eat them.

On Apr 13, 2000

I totally agree with Greg - While I worry about teasing, etc., I have no intention of ever keeping my son's pa a secret from anyone. Should we ignore an orthodontist's advice to put braces on our child because it would look geeky? Should we spend hundreds of dollars on name-brand clothing? Should we allow our children to stay out until midnight and drink beer with older friends so they'll be considered "cool"? Should a teenager with bad acne skip school for a week while the treatment kicks in?

Unfortunately, we can't hide from society - as much as we'd like to some days. We must educate others and try to instill confidence in our own children. Of course, I will try to help my son to be "cool" (I too remember the feeling of being picked on at times) but not to the extreme of risking his safety.

On Apr 13, 2000

This came up when I was discussing my son's kindergarden enrollment. The district's policy is to maintain confidentiality on medical conditions. This seemed to be an outgrowth of various lawsuits about AIDS confidentiality across the country and discrimmination children faced in schools due to AIDS and HIV. They were pretty evasive about this, but this was the implication.

She said we have children with athsma, allergies, diabetes, cancer and "other" serious conditions...It was just the way "other" was said and the way her eyes slid away that made the lightbulb go off in my head. Also, she did not contradict me when I said "AIDS!?", just did not answer.

I would think a distinction would be drawn here between various sorts of medical conditions but not in the policy. I was told, though, that whatever I wanted to reveal to other parents or his classmates was up to me.

On Apr 14, 2000

Excuse me Colleen, but I think you have completely missed my point.

Exactly where in my post did I say children should drink beer, not wear braces, skip school b/c of acne, or spend hundreds of dollars on clothes to "be cool?"

I'm not a terribly good communicator, and I apologize for that, but please tell me what part of my post gave you the impression that I am some materialistic, reckless, lout?

My decision is my decision and I can change it whenever I want to, IF I want to.

I believe I have gained some valuable material from this sight, namely, the HU901 treatments, food allerts and recalls. The level of anxiety, frustration, despair and back-lash that I read about here is affecting my life.

This has been an insightful site, and I wish you all the best.

This is Lola J and son, signing out.

On Apr 14, 2000

Lola, I hope you are still reading this board and have not dropped out. Please don't leave. Everyone has differences in opinions and sometimes these "debatable" posts can get pretty sticky. I don't think anyone was attacking you, although when people voice a differing opinion sometimes, in e-mails, in can come off that way. Like you, I haven't really made my decision on what to do, but with the "meaness" I see in kids these days, I do think it is best to keep as quiet as you can in the older grades (really JUST middle school). I think, as adults, we really DO forget what it is like to be that age and how skewed teenagers see things. I am not a secret-keeping person and hate to do it. When I was diagnosed with cancer, I told everyone about it--but just about everyone in my circle is a rational, compassionate adult. I remember middle school also and I remember all too clearly how cruel children were. Fortunately I was never the victim of it but I saw it. I think parents and teachers like to think it doesn't happen as often as it does. Of course, when my son is that age I will expect that he will share this with his closest friends, but I don't expect that I will make pitches to all the children about his allergy. The school staff will be aware as well as his close buddies. After that I don't think it needs to be broadcast. Not because it is shameful, but I would almost bet that SOMEONE will do something mean to him. Yes, in a perfect world we should be open and try to educate the public, but the way I see it right now, I don't think some children can be accepting--and it only takes ONE to make your child's life a living hell. In my daughter's class they have "discovered" that one of the children is a diabetic and they are all freaked out about it. I've tried to encourage my daughter that many people have conditions (and used my PA son as an example) that may threaten their lives but don't change the kind of person they are. My daughter seems okay with it, but they are still all a little skittish about it. But I bet there are parents who aren't "cool" about it and don't give their kids a good talk. Just as there are parents out there who feel threatened when their kids might have their peanut butter taken away. They are raising children with no compassion!! Anyway, I just was hoping that you wouldn't leave this group and that it is okay to have differing opinions. Christine

On Apr 14, 2000

This site was an absolute blessing when I first found it, but I am now also feeling that some posts are getting too preachy. We all have to handle the PA situation in the best possible way for the good of our children. If the poster feels it is necessary to keep the allergy quiet that is their business and all they are looking for is advice not preaching!!!!

We all have been educated in PA. We all know what's best in our particular situations. We must not try to push our beliefs on others just because we feel they're the "right" way.

I have noticed this before on this site and have kept my feelings quiet until now. I will also continue to browse the site for alerts and recalls and products, but I also will no longer be posting.

Peanut allergy is a small part of my child's life but, it is not all that he is about. Stay Safe Everyone!!!!

On Apr 14, 2000

My son is in 3rd grade and there is a little teasing and resentment already. This will likely get worse as he advances up each year. I have wondered if my son requested for the information to be hidden what I would do. Right now he is happy and has lots of friends so I will keep things the same for 4th grade. When he gets older I hope I can follow his wishes, but only if we feel he will be safe. If not we would home school if need to.

I enjoy visiting this board and have found such good information. And I find it interesting to read different parents opinons on how they handle the same situations that my family has to handle. It gives me a refliction of the real world. I hope that no one including myself every makes someone feel that they do not belong on this board. I hope you all stay!!! Michelle

[This message has been edited by michelle (edited April 14, 2000).]

On Apr 14, 2000

As for the above, I hope we all remember we do get a little stressful at times when dealing with PA, so it is best to not take things personally. Right now, I feel like children will find things to tease kids about. If not PA, maybe something else. I try to instill good self-esteem in my daughter so that she may properly handle any remarks made by classmates. I feel that is really all I can do as a parent for any of my children - PA or not.

Michelle, what kind of teasing has your son had to deal with? Only in K, I wonder what type of teasing we may face.

On Apr 14, 2000

Rae, Just a comment on this thread and I'm certainly not trying to turn this subject matter into an argument, but for me, the issue is not merely "teasing" here. We all know that kids will find something to tease you for (glasses, acne, fat, skinny, dorky clothes, etc.). Teasing is not my concern. Safety is my concern. My concern is some kid, who has no concept of the finality of death or brain damage, will think it's "fun" to see if my son really IS allergic to peanuts and what might happen. While picking on a child for glasses or the like is not nice, it is not life threatening. I KNOW kids do mean things. Many years ago when I was in junior high, a kid in the school slipped a Quaalude into the Home Ec teachers coffee. He thought it was funny--it wasn't, it was scary. This is not the only incident I witnessed. There have been similar incidents that have occurred in our area like this. Maybe they are rare, but that is my main concern. I know that if I had attended middle school and there had been a child with a known food allergy, someone would have done something to him/her. Maybe I just went to a rough school. Christine

On Apr 14, 2000

I totally agree it is not all about teasing. That is just the one area I was speaking of at the time - it is definately taken hard by children (and parents). The reason I asked Michelle what kind of teasing her son has dealt with is because for a PA child it can link to a safety issue. I did not go to a rough school at all. It was a small school. My daughter goes to the same school; it has gotten bigger, but still not big. So, I may be a little naive on that issue.

On Apr 14, 2000

Well, I've managed to be misunderstood yet again and so I will be the one to stop posting.

I'm just trying to say that keeping an allergy quiet in order to prevent teasing can be LIKENED to the things I mentioned. That's all. It wasn't to imply anything, just to draw parallels, make analogies, hopefully open minds to another way of looking at it by using these analogies. Obviously, I miscommunicated.

I don't think anyone on this website is a lout or materialistic - it's almost impossible to be that way when dealing with a medical condition. It was simply an analogy to compare handling of social pressures.

I don't have the time to post every day like I've been doing anyway - I felt that if I was in some way helping, it was worth it. Clearly, I'm not, so I'll stop. I'm willing to put time into writing if it's helpful, but not to cause someone to sign off. This is not what I am about at all. I think I'll still visit so I can learn from all of you - I think this site is wonderful, and I think all of you are wonderful too. But I'm going to resist posting for a while.

For what it's worth, this was just an opinion I posted earlier, and I believe everyone has their right to opinions - it was not meant to "preach" but to try to show it in a new light (I learn best through analogies). I understand everyone's reasons for not wanting to tell, but I just worry that not telling could spell a different kind of disaster. I worry a lot about teasing, and I am very aware of it. But elementary children CAN be "mean" too (Read Judy Blume's "Blubber" as a reminder).

There may not be a good "answer" to this strand, but my post was meant to help see it in one way, NOT as an attack on anyone. I don't feel that we should attack each other - we NEED each other.

Lola, I hope you'll come back, accept my apology for not being clear and not creating the right tone in my message, and please keep this strand open because I feel like it's a good topic.

On Apr 14, 2000

Mostly he hears things like: we can not have PB crackers because of YOU! Why can't WE have peanut butter you could leave! Just don't eat it! One kid said he was not going to be his friend because he could not eat peanut butter! My son just ignores them or tells them that at least they can eat it at home. MOST kids are his friend and some bring peanut free lunches just to eat with him. So far nothing has got out of hand. We prepared him for most of this type of teasing and we also have started to prepare him for pranks and such.

On Apr 14, 2000

Thanks, Michelle. I hope I can also prepare my daughter.

On Apr 14, 2000

One last thing before I go: Maybe we could ask some of our children (of different ages) to respond? How do THEY feel? Would they rather it be unknown? Maybe it would be better that way, I don't know for sure (I feel scared not to tell others, but maybe it's still manageable that way).

Please consider asking your children to let us know what they think - I'll bet we could learn so much from their thoughts and feelings too.

Even if you would prefer they didn't visit this site, you could ask them and let us know what they say - all ages from K-12!

P.S. I feel horrible for causing such a mess on this strand - I've never intentionally hurt anyone physically or emotionally in my life, and I had no idea my post would be taken the way it has. I have been interested in keeping pa.com members together, working together, etc. - I don't know how I managed to cause a problem when that's what I've hoped to prevent. I wanted to contact Lola via email to apologize and explain my post, but it's unavailable - if anyone knows her, please let her know I've gone away for a while so that she will hopefully come back.

On Apr 14, 2000

As for me, I love hearing from both sides of any argument. Many times it reinforces my own decision, and others I am swayed to the other side. All times, I am enlightened.

Why can't we have healthy debates here?

Kristene

On Apr 14, 2000

I know I said I'd go away, but I have one more thing to add since I can't stop thinking about this now.

I'm trying to understand the emotions I caused in this strand, and I think I do now. I'm taking master's classes in which I am supposed to give a strong argument, use analogies, and most of all, be tough. A "weak" argument is cause for a lower grade. When I responded earlier, I drifted into the mode we use in classes without thinking of the tenderness that I should use on this site.

I think we expect each other to be tender because we feel emotionally wounded day in and day out dealing with the food allergies and the public's ignorance of them. So when we sign on here, it's a place to seek some peace and understanding. I guess it's not a place to argue with brusque analogies like I used above. It's hard to argue a point on discussion boards, and the issue of tone is a problem too. And, of course, the classes I'm taking are training me to argue a point. I get wonderful grades and remarks in my classes, but I failed here. I just hope one day when I'm a teacher, I won't cause problems like this (I want to be a teacher to help the world and help others get along and develop tolerance for differences - I can't bear the thought of not being capable of doing that).

My husband and I debate all the time too - and it has been good for us. The idea that communication produces a stronger relationship has held true for us so far, but there are times when my psyche is not up to a debate. I guess we start debates here on this site hoping to find "nice" answers but don't have the emotional energy to deal with any more conflict. I can understand that - it's part of the reason I visit pa.com after a long day.

I also believe it's possible to argue strongly on one side of an issue one day, read someone else's strong opposing argument the next, and completely change your mind. While I feel strongly about "telling all" right now, I am very open to hearing reasons from the other side of the argument. Especially after hearing what some of the kids say, I may very well change my thoughts as my understanding of this issue evolves (right now it's just at the stage of drawing analogies to other social pressures as mentioned earlier).

OK I'm really done now. I'm sorry I've taken up this much room, but I just felt the need to try to clear the air. I hope I've at least done that because I feel pretty depressed right now. Lola, if you come back and can forgive me, I need to hear that...

On Apr 14, 2000

Colleen, The only thing you did "wrong" here (if you want to call it that) is to take someone's opinion (Lola's and mine) and basically infer that you didn't understand why we would feel this way and then gave the analogies that you did. While I personally don't mind it (I love a good debate) some people do and in all honesty, this was not a "debate" thread. It was more of a "poll" thread asking if you kept it a secret or not and what YOUR reasoning was. I think when some people respond to these posts they do not expect their views to be analyzed. I think what this board needs is a good "debate" forum. I belong to a Disney board that has a debate forum and it's great. Certain questions are posed regarding issues and people give their views and then they are picked apart by whoever!! I love it, but many people don't. The website owner created this forum because there were many little debates raging and people were getting offended left and right. So, those who don't like to argue and analyze issues don't usually enter the debate forum. Maybe we just need something like that around here. As I said before, I wasn't really offended by your post; however, it did come across a little "brusque", but I usually like to give people the benefit of the doubt in e-mails since you can't hear their tone or see their faces. I understood where you were coming from but I do not equate a peanut allergy with acne, glasses, clothing, etc. And a part of me always wants to believe that education and honesty are always the best way to win people over, unfortunately, I've seen different. Also, I hope YOU don't stop posting either--I think we should all be able to say what we feel and not feel like we've got to walk around on eggshells. Unfortunately, sometimes people get upset. Christine

On Apr 14, 2000

Hey, I enjoy reading "everyone's" post on this topic and the countless others, as well. I am grateful to you all for taking the time to post and offer your insight. Even if I don't agree with a post, it exposes me to an opinion that I might need to help me re-evaluate my thinking (see the other side.) Sometimes it has the opposite affect and strengthens my convictions. I feel we all benefit greatly from the diversity of opinions and insight we bring to this "global" discussion about an issue that affects our lives daily and our children's future. I am grateful to you all and hope no ones signs off.

Lola J, I don't feel Collen Marie was implying you were anything. My opinion is that she was citing examples of how kids are singled out. I feel certain that if my child ever goes to a traditional school (I home school) she will be singled out and my worst fear is a student will want to do their own peanut test on her to gain attention for themselves. I feel we live in a society that has desensitized our children in so many ways.

Lola J, if it is any consolation, my first post was due to a post from a p.a. aware person re. school ban that said "hey, what's the big deal! Just have the kids wash their hands." As a mother of an "airborne" allergic, I took exception and pointed out in my daughter's world that won't work. Then I was accused for trying to cause dissention in the p.a. world by trying to differentiate airborne from other degrees. I almost decided to never post again and I'm glad I changed my mind. It's America. We can give our opinion and be heard. If being preachy means stating your opinion with conviction, then where's my soap box. Lola J. and Collen Marie and everyone else out there in p.a. land, I look forward to hearing from your soap box, as well. We can voice our opinion with conviction and tact, as well.

On Apr 15, 2000

Keep on posting!

Discussions such as these is how many become educated about a topic! The issues we face often cause a lot of emotion. This is something we all need to deal with, so keep on posting your feelings and opinions as well as any information you find. This is how we support and educate each other and it helps to educate society about our allergy.

P.S. Don't worry about the lengths of your posts.

------------------ Stay Safe,

[email]"Chris@PeanutAllergy.Com"[/email]

On Apr 16, 2000

To tell or not to tell...

LolaJ, son and everyone else that is signing off, I hope we hear from you again. This is slightly off the track, but I know I couldn't take reading all these posts and the high amount of emotions that one can read in some of them.

As to telling...that is a tough issue. My daughter is in kindergarten and right now everyone in her class knows. It is kind of tough not to have the kids figure it out when a kid with a pbj sandwich gets wisked to another table and away from my daughter. My daughter is not all that out going and does not like extra attention, but that is what she gets as kids try not to bring pb and announce it to the teacher and teacher aide so they can have the treat of sitting next to my daughter.

On Apr 17, 2000

I didn't want to stop posting, and I thank those who have convinced me to continue posting. I was planning to wait a while before returning - but ... well... thanks to your support, I feel much better.

I hope things are going OK for you, too, Lola - if you're still reading (I can hope!). I honestly believe that we all need each other whether we agree or not. Know what? I wasn't singling you, or anyone out - just venting my own feelings. But, I have overreacted on other strands before and assumed others were suggesting things they weren't - it's so easy to do! In short, I'm not upset with you and I see no indication that anyone else is. We all hope you'll come back. If you're still upset with me, please email me separately so we can work it out (or post it here, if you wish) - either way, I doubt it would take more than one or two exchanges because I think we are truly "on the same page," so to speak: two moms trying to deal with an elusive allergy and trying to do the right things for our pa children. Even if we don't agree on everything, having that in common is HUGE! My opinion, of course! (smile)

Meanwhile, can we now encourage others to post their thoughts on this issue because it is one close to all of us - and a very tough one too. I can see where I wouldn't touch this strnad with a 10-foot pole had I not already been involved! But I think we are back on track now and it seems like such an important issue.

I've been reading articles on teasing, in general - more later on those (Very informative, though). Of course, that turned out to be just one side of this topic.

The other problems mentioned, though, regarding malicious attempts to physically hurt a pa child with pb present a different issue - one that would involve school administration, particularly at higher grade levels. I'm not ready to argue either side of that one yet without thinking it through, but surely there are readers out there who have some good thoughts on this (both sides?).

BTW, Thanks again to those who emailed me personally - I desperately needed that last Friday.

Has anyone talked to their child about this strand? It would be especially interesting to know what middle schoolers and high schoolers have to say. Please ask them for all of us who are feeling overwhelmed (me) and clueless (that's me too!) at times...

On Apr 17, 2000

My daughter is in grade 4. All the children in her class have knowen about her allergies since day one. I go in to the class and we talk about allergies in general. The kids are great they talk about drug allergies, dads allergies to bees ect. and then we talk about my daughters allergies and how serious it is for her. The kids have seen an epi-pen injected into a grapefruit so they know this is not fun and games. The kids are the ones who are the first to protect her if they realize there is something in the class with nuts. When going to birthday parties it is very important that the families know about her allergies. So I guess for my daughter she feels it is important that all her friends know about her allergies.

------------------ Karalot

On Apr 19, 2000

I was in the "I don't want to touch this thread with a ten-foot pole" until now for fear of keeping things stirred up. It has truly made me think about something I had not yet thought about. I loved the last post. What a great idea to go into a child's class and discuss allergies in general so all children can share about who they know with allergies. It makes them feel a part of it. I never thought to bring in one of the expired epi-pens to use on the grapefruit in front of the class. I do have two that I will be letting my son's pre-K teacher for next year and the school administrator use on the grapefruit. He is still a little young to do a big talk with his class, but I plan on doing the children's book and video next year in his class. I get so many great ideas from you all. I didn't think this thread was bad anyway. I like reading all opinions.

On Apr 20, 2000

I am very new to dealing with my three childrens' peanut and mixed nut allergies. My first instinct is to tell everyone to help protect my children. (I found out two days ago that all three of my children are severely allergic). But I have to comment that my daughters grade two class has been great. On Tuesday when we found out ,our school could not get the letters out to everyone in time for the bus so I personnelly called all of the parents in my 8 year olds class and in my sons kgn class. On Wednesday morning there were only two parents I had not managed to get a hold of. Fate would have it that both of those children brought Peanut butter sandwiches yesterday. The one boy was so upset that he did not know about my daughters allergy that he refused to eat his lunch even after the teacher had said he could but not a the regular table, where my daughter sits beside him. I came into the class room later in the day not knowing that this lunch incident had occurred and all of the children were a million questions and all very protective of my kids. It was very overwhelming that they cared so much about on of their classmates.

Today , the day before Easter break treats from many of the families came into both classes. I was overjoyed at the labels that parents had put on everything and those who knew the treat would not be safe sent a special treat for my children.

I too have thought of when my children get older, threatening situations as decribed above could occur. I pray it would never happen, but I still feel that by keeping it secret, it makes the children feel "different" If we all talk about and make it more common place it won't seem like such a big deal. Even though it is.....

On Apr 20, 2000

The children in my son's class are very aware of his allergy. They saw his first bad reaction. They are very protective of him. We do live in a small town, I think that makes a big difference.

Related