How to get past the hurt? Discrimated against for Food Allergies

[TN Mama]

No words of advice, just :grouphug: :grouphug: :grouphug:. I'm sorry you were hurt.

[thescrappyhomeschooler]

I haven't read all the responses, but this is how I reacted to your story. I completely understand that the burden on your friends to modify their children's diets every time you got together with them, may be too great for them to handle on a regular basis. That said, I think they went about it the wrong way. Since these were friends and not mere acquaintances, I think they should have talked to you and told you in advance that they needed to start a new group to meet their own needs. They should have been honest with you up front. I'm sorry that they weren't and that you were hurt by that.

[gardening momma]

I don't know if this helps, but I might see it this way: These friends may really be struggling with the mortality factor.

I wonder if they may also be thinking--what if we try, but fail in some regard, and your son suffers as a result?

[eight_gregorys]

I sometimes think if he was in a wheel chair everyone would accomodate him.. but since his disability is hidden it is easier to walk away from him than accomodate.

I understand exactly how this feels. My children aren't sick or have allergies, but I do. I have Lupus for 5 years now. I can't handle UV rays...to include fluorescent lighting...much less the sun. I stay sick, but because people don't necessarily see it they don't understand. They think I'm overreacting or just being stuck up because I don't come to park days and such. I have six children and am exhausted...people don't get it because I don't "look" sick to them. Its very frustrating. I'm sorry you are going through this. I can't imagine having to deal with something like that with one of my children. You have to do what you have to do to product your son whether it inconveniences others or not. I think its pretty inconsiderate that others make such a big deal about not eating something...one day a week. I think the lying and phoniness is what would have really upset me. I'd rather someone say, "Sorry, I can't accommodate your kid's allergies", then to start another homeschooling group and purposefully exclude me and my child. Who knows why people do things though. You never can tell why people make the decisions they make. Maybe they thought they were doing your a favor. It still stinks no matter what.

[lincap]

I think you are onto something with the mortality thing. When my daughter was diagnosed with terminal cancer, everyone ditched us but two of my closest friends---one who had had a brother die in a car wreck and another who was battling cancer herself. After she died, people "stayed gone" for about a year. I have had to actively work to rebuild friendships. Most people just don't know how to handle these situations emotionally.

 

My allergic daughter was the one who got cancer and eventually ended up in a wheelchair and then blind/deaf. I don't think people are any more accommodating to the physically handicapped---it's just by nature less isolating and more visible--a constant reminder.

 

*hugs*

 

Hugs to you too! Big ones.

 

You understand the isolation. And I can now see the mortalilty that has been mentioned here..

 

These 2 are still active in our group and we resume from our winter break next week... so I just find it uncomfortable. I now know that they started this other group and kept it secret to keep us from joiing and dealling with allergies 2x a week instead of 1x a week.

 

Just wish they told me in the Fall. A simple "hey we are starting this other group and don't feel we can accomodate his safety".. instead of this around the back way.

 

I do know of 4 other food allergic famillies near me. 3 go to public school and have had reactions requiring epi-pens in school and 1 is in my homeschool group.

 

My interim pastor at my church wants to make food allergy awareness part of my church's mission but ... the congregation ain't quite there yet.. "coffee hour" is just too much fun right now. Awareness is there..

 

OH here is a news story about us from March 2009!

http://www.wcsh6.com/news/health/story.aspx?storyid=102501&catid=8#comments

 

There is a video of what aired on the news... the top pic turns into a video if you wait a min for it to load.

[abbeyej]

The only thing I wanted to offer is that it can and likely *will* get better.

 

I remember thinking, when my son was 4 and shortly after we had to rush from a birthday party at the park to an ER for epinephrine, antihistamines, steroids, oxygen... Thinking that he'd live with this his whole life. I thought he'd never go to summer camp. We took his own food *everywhere*. All he could eat at that point was meat, certain leafy green veggies, mushrooms, peaches and blueberries.

 

I remember crying at the grocery store. I remember crying as I sat on the floor, surrounded by index cards as I tried to plan balanced meals for him with a rotation of the few foods he *could* have...

 

It was just so, so hard. And so very scary.

 

BUT...

 

My son is 11 now. He eats *everything* except nuts (tree nuts and peanut) and we both suspect that he may not even actually be allergic to those any more. Last year he went to Boy Scout camp and ate the food there. :) In the last two years, I've sent him to birthday parties where he ate the same pizza, cake, ice cream, whatever as everybody else. ;)

 

I would say things *started* to turn around at about age 8. And I've heard and read that around 8 is a time when a lot of kids show major signs of outgrowing even significant, life-threatening early childhood allergies.

 

I didn't really believe it could happen when people told me that when my child was 4. :) I figured it was certainly better not to get my hopes up.

 

But even if the allergies are the same, it gets easier when the *other* kids are old enough to really understand. When they're old enough that they don't smear and slobber so much. ;) I really think things were easier by 6 and 7, even when we still had to worry about food a lot...

[Parrothead]

I can't believe no one has mentioned this yet. Are you in a large enough area for more than one homeschool/social group?

 

Start (yes, it is a lot of work) a group for kids with food allergies. Set the times from 2-4 in the afternoon, no food allowed at the activities/outings. There may be other white glove kids hanging around home with no one to play with.

 

While your son's allergies are severe what he is allergic to is not uncommon. I"m sure there are other kids who don't eat dairy, egg and peanut. You might come up with someone who can't have wheat or corn. Maybe everyone can agree to some kind of rice dish for lunch on meeting days.

 

Not only would you find someone your kid can play with, you'll meet other moms who are struggling with very similar issues. You'll be able to brainstorm with other moms ways to host holiday activities that are safe for all your kids. You'll have support and possibly a recipe exchange.

[BBG580]

Remember most friends are together because it's easy...either they work or live near each other, their children are the same age. When things get harder (moving, one has kids the other doesn't) the relationship fades.

 

 

 

I think this is such a good point and it is very true for me. I am so busy with my own children that most of my adult friendships at this point have to be pretty easy and generally involve my children as well.

 

I do have a good friend whose son is allergic to many foods and she always brings food for him or offers to prepare food that everyone can share. I don't think these women were intentionally being mean to you, I think they just need some easy in their lives and micro-managing food and worrying if they've somehow messed up prior to meeting with you and your family and that failing on their part could lead to some disastrous consequences for your son - well, that is a lot of responsibility to ask of other people. I wouldn't want to feel that responsible for potentially causing another child to suffer seriously physically.

 

Anyway, I'm so sorry you feel so hurt. I don't think they are rejecting you personally, I think they are just not well equipped to deal with the special needs of your son or to feel that they have to shoulder some of the responsibility for his allergies when you are all together. :grouphug:

Edited February 23, 2011 by BBG580

[LibraryLover]

"These 2 are still active in our group and we resume from our winter break next week... so I just find it uncomfortable. I now know that they started this other group and kept it secret to keep us from joiing and dealling with allergies 2x a week instead of 1x a week."

 

 

It would have been nice to be told. They were probably too chicken.

 

I am glad that still do the other playgroup with you.

 

Humans are so....stupid. :tongue_smilie:

[Angel]

:grouphug: I'm so sorry for you.

 

I, personally, would be scared to death that I or my child would be the one that set off a horrible (or even deadly) reaction. That would devastate me. If I was part of your group, would I do as you ask...I would...though it would be hard for me because I have a dd with her own issues and food is one of them. But even though I would do it for you, it would still be frightening to me to think that maybe I would be the one to do your son harm accidentally. I don't know that any of them are feeling that way, but I know for certain that I would. My older dd used to have a friend that was deathly allergic to latex. She had to carry that epi-pen everywhere, wear gloves in gym class because of the floor, be vigilant for balloons, only play with certain types of toys, etc. The list was huge. I was scared to death every time she spent the night (usually dd went over there) because what if I had missed something in the house and she was allergic to it. I loved that little girl and the thought of doing her harm unknowingly was so scary. Maybe that is what some of them are thinking.

[jujsky]

Well, for most people that would be fine. Unless you have a kid like my 4th or my niece who literally will starve before they eat anything but those few items. They both have huge sensory issues and I'm pretty happy they haven't starved to death yet. I would not be able to go, even though I'm knowledgeable about food allergies simply because at least one of my kids would not eat a single thing. Plus there's cross-contamination issues. Like food crumbs in the car, pockets, are you meeting at someone's house, etc.

 

:iagree: That is my son to a T -- a picky eater with sensory issues who will not eat if it's something he doesn't like. I could give my daughter fruit, but I can't think of a single breakfast item my son would eat that does not contain eggs, dairy, or nuts. I could probably (and would willingly) avoid one of those food-groups, but not all 3. And we do cook with a lot of those items, the kids snack in the car too, so cross-contamination is a valid threat. If a playgroup was THAT restrictive, I couldn't go. I'd be too freaked out that I would miss something and inadvertently cause a reaction or death of another child. That would be too much to bear and add too much stress to my life. OP, I truly don't think these ladies were doing this to be mean. I know you're hurt and I understand why you're hurt. If I had to guess based on some of the things you said (your ability to confide in them for one) I would guess that they felt an incredible pressure from you. If they knew this was the only time you could let your guard down and you told them that on multiple occasions, they probably felt an enormous sense of guilt that they couldn't keep doing it. From their perspective I bet avoiding the issue was the kindest thing they could do in their minds. If they hadn't been caught and you never found out, it certainly would have been kinder than a confrontation where they said, "We just can't do this anymore -- sorry."

[scrapbookbuzz]

 

I sometimes think if he was in a wheel chair everyone would accomodate him.. but since his disability is hidden it is easier to walk away from him than accomodate.

 

 

 

 

I can relate to this statement. My daughter has a 'hidden disability', too. While it's not a near fatal allergy like your son has (that must be REALLY tough!), it's still not 'out in the open' like a wheelchair. My daughter is 12yo and has Asperger's Syndrome (high functioning autism). Some people just don't get why a 12yo would have a melt down similar to that of a 2yo. And some people don't get why you ask so much of them.

 

Reading through the responses, I've come to see both sides of the issue. The best thing that I can do for you, personally, is pray. I pray that you can move beyond the hurt that you feel and are able to reconcile those friendships, if they're worth that much effort. I also pray that your son, and you, can form some friendships with people who are willing to put in the extra work that's required there. Some people just aren't willing to do that. Some are. I pray you meet the friends that are. :grouphug:

[Colleen in NS]

Another Mom of two anaphylactic/asthmatic children chiming in here...

 

We haven't been able to visit some very close family members in their homes (ie for extended family holiday celebrations) for years.

 

This has become the case for us, too. It IS hard. And it was hard to not take it personally when I was told by two family members (who live far from us) that they'd each gotten a cat. I had to force myself to rationally understand that they wanted cats to be a part of their daily lives, and that I could not ask them to refrain from living their (faraway) lives in a way that would accommodate us once a year or so. But I also had to calmly explain to them a few times, when asked when we were coming to visit for a week or so, that we cannot stay in their homes, no matter how much they clean or how far into the basement they store the cat for a week. And, since we can't afford to pay for all of: 1. gas for the trip, 2. hotel rental or 3. other rental with kitchen facilities and pet-free zone, I don't see at this point how we'll ever get to go visit them again. At this point in my family's life, those family members will have to come here if they want to see us. And I sure do miss them and wish I could go to them, too!!!

 

lincap, it looks like you live close to where one of my family members is - maybe we could come and safely stay with you!! :D

 

He is much more allergic than most kids. He cannot touch most public surfaces (library, park etc) without getting hives on his hands. He wears gloves in public. Gloves. White gloves everywhere at an attempt to keep him from accidental exposure to his skin. We wipe down every surface we can in public that he touches. We carry white sheets with us to cover any place he is going to sit on. A specialist we saw told me we would be lucky if he lived past 10 yrs old. The severity of his skin contact reactions surpasses anything they have ever seen and we were told if he does eat an allergen most likely an Epi-Pen will not save his life.

 

:grouphug: about the skin contact reaction and the comments by your specialist.

 

I've BTDT with carrying sheets with us to movie theatres a few times...and then we gave up on movie theatres. I've also carried plastic tablecloths to picnics and not shared with others...

 

Just for background.. most of the families in our homeschool group I have known since he was a newborn and were with us as we figured out what was wrong with him. It took months to sort it all out. Their love of him and willingness to eat safe for him is just so amazing. But as many of you have said it is a burden no matter how close we are as friends.

 

I hope you will be able to mine out a jewel or two of a Mom from this group, or elsewhere. If I knew you in person, I would make efforts to accommodate your family in random get togethers, even if I couldn't do the weekly commitment. It looks to me like your friends didn't know how else to handle it, and they handled it in a way that hurt you unintentionally.

 

Like abbeyej, I have found that as my kids have gotten older, it has gotten easier to deal with. I used to hyperventilate at the scenarios I'd conjure up in my mind, of what could happen to my kids in group situations. Sunday school is big in the church we've attended since before having kids, and I felt pressured, when ds started walking, to put him into the nursery. Oh my. Looking back, I should never have given in to that pressure, because putting him in there caused me WAAAAAAAAAYYYYYYYY more anxiety than just keeping him with us during the sermon. Children weren't forbidden in the sermon; I think the director just wanted to have children in there to interact with each other - which I now don't think was necessary. She tried really hard to do the whole safe-snack thing (I didn't ask - she was really working hard to coax me into letting ds go to the nursery), and I had to explain things to her over and over again, and eventually I became responsible for the snack (and one time was asked to provide a different snack because one child *didn't like raisins in his cookies*) - all for something that *I didn't consider necessary* (putting my child in there in the first place). If I could re-do my children's baby/toddler/preschoolerhoods, I wouldn't care at all if they never did group activities with other kids. Family visits with other families who cared to work with our fragile needs, yes. Groups things, no. The group thing caused way too much anxiety and risk for me and my children in those early years. And it was completely unnecessary.

 

But anyway, some of these things have gotten easier as they've gotten older, because they have grown up with their "normal," their physical needs being safely met, and with learning bit by bit how to take care of themselves. I am preparing them for life as if they will always remain allergic and asthmatic, so that looking out for themselves will come second nature. And if they outgrow some things (and yes, one of them *has* outgrown a couple of severe allergies), then great. But if they don't, they will have had their childhood years to learn to care for themselves. It *is* a lonely road at times, but I've tried to look for the positive - like, they will know how to cook and bake from scratch, which I'd venture to say is more than many children their age will be able to do when they grow up.

 

I am part of FAAN. I did attend a Food Allergy Support group but that was pathetic. The nurse who ran it was clueless about allergies and would talk about how kids with diabetes have it harder.. it was akward.

 

That. is. pathetic. Gosh, a non-RN but allergic-kid-Mom could run a support group better than that!!!!!!! Was that operating under FAAN? I'd be looking into changing that situation!

 

Random thought....I wonder if your specialist made the comment about being lucky to make it til 10, because of a combination of your son's allergy severity and the multiple group situations that babies/toddlers/preschoolers/early schoolers find themselves in, in our society. Maybe he's looking at it from that framework, that most kids grow up being towed from one group to another? And that by 10, things do start to get easier? Maybe, if you can keep him sheltered (go Mama Bear!) and not let situations, such as what you've explained here about the other two Moms, get you down for too long, you can find the strength to carry on with an optimistic attitude most days? One that will help you to pick your way through each obstacle that comes up. I really do hope you can find those jewels of friends that I'm sure are out there!

 

:grouphug:

[rafiki]

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[roxanne23]

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Edited January 4, 2023 by roxanne23

[Sebastian (a lady)]

I can understand how you would feel hurt at feeling that your son wasn't welcome at a group because of the burden his presence put on others.

 

I wonder though if this is the full story of what happened. You said in another post that these two families are still coming to the original group. So they haven't started to completely avoid you.

 

Who told you that the allergies were the reason? The moms who formed the new group or someone who might have only had partial information? Just as you would have liked to be spoken to about the exclusion of your son, you should probably talk directly to your friends rather than assuming that what you've been presented is totally correct.

 

For example, it looks like your son is pretty young. Is the new group age appropriate for him or is it more academic than he might be ready for? Is the new group focused around a particular curriculum?

 

I'm not sure that talking to your friends about the facts on the new group will make you less hurt. But I have often found that my presumption about situations isn't really the case.

 

One other thought. I hope I can phrase this gently. You might ask someone who is in the playgroup who is a trusted friend about how you come off to others regarding the allergies. It might be that you aren't being perceived in quite the way you think you are. What to your ears might be lenient compromise and easy to meet requests might be being taken as dictatorial or harsh. I've found that sometimes when I'm having conflict with others, it is in part because I've not been as gentle as I think I've been.

 

BTW: This is something I would do on the phone or in person but not via email. It is too easy to read emotion into an email, and there is too long of a time lag in responses.

[mommyofthree]

:grouphug: I feel so bad for you and your son. I'm sorry you're going through this but I do believe you're asking too much.

 

Maybe it would help to look at it from the prospective of the other moms. As moms, we naturally protect our children and I believe the other moms are just protecting theirs. Imagine if a child in your homeschool group forgets that he should not eat x,y,z and goes to the play group, interacts with your son and your son has a fatal reaction. Now, imagine that child trying to live with the knowledge that his "thoughtlessness" caused the death of a friend.

 

That is too great a burden for any child to carry. I cannot allow my child to be placed in the position of carrying that burden. :grouphug:

[5knights3maidens]

I can't believe no one has mentioned this yet. Are you in a large enough area for more than one homeschool/social group?

 

Start (yes, it is a lot of work) a group for kids with food allergies. Set the times from 2-4 in the afternoon, no food allowed at the activities/outings. There may be other white glove kids hanging around home with no one to play with.

 

While your son's allergies are severe what he is allergic to is not uncommon. I"m sure there are other kids who don't eat dairy, egg and peanut. You might come up with someone who can't have wheat or corn. Maybe everyone can agree to some kind of rice dish for lunch on meeting days.

 

Not only would you find someone your kid can play with, you'll meet other moms who are struggling with very similar issues. You'll be able to brainstorm with other moms ways to host holiday activities that are safe for all your kids. You'll have support and possibly a recipe exchange.

 

Awesome reply! I agree with everything said!

[Gooblink]

Hugs to you too! Big ones.

 

You understand the isolation. And I can now see the mortalilty that has been mentioned here..

 

These 2 are still active in our group and we resume from our winter break next week... so I just find it uncomfortable. I now know that they started this other group and kept it secret to keep us from joiing and dealling with allergies 2x a week instead of 1x a week.

 

Just wish they told me in the Fall. A simple "hey we are starting this other group and don't feel we can accomodate his safety".. instead of this around the back way.

 

I do know of 4 other food allergic famillies near me. 3 go to public school and have had reactions requiring epi-pens in school and 1 is in my homeschool group.

 

My interim pastor at my church wants to make food allergy awareness part of my church's mission but ... the congregation ain't quite there yet.. "coffee hour" is just too much fun right now. Awareness is there..

 

OH here is a news story about us from March 2009!

http://www.wcsh6.com/news/health/story.aspx?storyid=102501&catid=8#comments

 

There is a video of what aired on the news... the top pic turns into a video if you wait a min for it to load.

 

:grouphug: :grouphug: Thanks for sharing that article.

 

I'm sorry about the hurt you experienced. I have a diabetic/celiac and get togethers - especially sleepovers now that he's a little older - are stressful.

 

We were once turned away from a Chinese food restaurant when we asked if they had gluten free soy sauce. The manager came out and said he'd rather not serve us because he couldn't guarantee the food. I can't say I blame him...but it did kind of knock us for a loop.

 

I like the idea of starting your own group - if you've got the energy.

 

Best wishes to you. :)

Edited February 23, 2011 by Gooblink

[happypamama]

(((HUGS))) -- I am so sorry that you were hurt. It sounds like they were trying not to hurt your feelings and figured you'd rather just not know about the other group. I'm so sorry to hear that it backfired. I do think having to skip all three of those foods twice a week is a lot (I'm actually having trouble picturing just what I would feed my kids that didn't involve dairy or egg or peanuts in some form, especially for breakfast), and I'm thinking that they were feeling that it was just too much of a strain overall on the friendship and wanted to bow out gently before it become too much of an issue. It does sound like they could have gone about it in a different way, though. I'm so sorry for what you and your son must do to keep him safe -- that's so unfair, and I hope you're able to find some good friends to play with.

[alpidarkomama]

No offense to you...my son is on a special diet and a even physical interaction with grains, sugar, and other carbohydrates (including fruits, vegetables, hand sanitizer, toothpaste, sunscreen) can set off massive seizures...but I think you're taking this too personally.

 

:iagree:

 

They didn't ask you to leave the group. They just formed something that was (presumably) less stressful for them. I'm so sorry you have to be so careful; it sounds like a very difficult, stressful position to be in to have to be so vigilant! It is hard for others to keep up the same level of vigilance, so I can understand their position too. I'm sorry it hurt your feelings, though. :(

[Tullia]

I'm so sorry for what happened to you. :grouphug: Maybe they don't feel capable of dealing with the responsibility, and don't fully realize how deeply isolating food related medical conditions can be. I hope you will be able to find friends who are willing to help you. My son's allergies are not severe, but he has multiple issues that make it impossible for him to just sit down and eat whatever is served. Most of the people we've dealt with have been understanding and try (but don't always succeed) to be helpful. I have been floored, though, by people thinking it's no big deal, or that we're over-reacting. I've had people be openly hostile; my reaction to them: :auto:

 

My heart aches for you. --Martha

[2cents]

:grouphug: I understand you feeling hurt. I can see both sides though. It would have hurt just as much if they had come and told you that they couldn't avoid those foods and didn't think you could be included in their group. Either way, you would have felt hurt. Your friends probably were trying to avoid hurting you but in reality, it would have hurt whichever way they chose. :(

 

It is probably a better idea to try to find families that have similar allergies and bond with them for that peace of mind. There is never a guarantee that parents of non-allergy children fully understand what is really needed. There isn't a total guarantee of that with parents of an allergy child but I would guess the risk of incident due to being less informed is significantly lower.

[Gooblink]

May I also add that, once a little time has passed and (since you mentioned church...or maybe that was someone else) you've prayed on it...it would be a good idea to tell your friends, gently, how the whole incident made you feel. I think clearing the air is healthy, even though it's not always easy.

[kalanamak]

JTheir love of him and willingness to eat safe for him is just so amazing.

 

Well, I have yet another take on it (but I do tend to "cope" by seeing the sunny side of things): I've never been a mile near a homeschool group that would be that accepting, so if ANY group will have me in that situation, I'd count my lucky stars.

 

(This is along the lines of "How to get past the hurt".)

[Tree House Academy]

... as a parent of children who do not have any allergies, I would find it tiring to have to worry about food everytime we got together,*especially if we got together quite often. I would do everything I could to follow the "rules" set out, for your child's sake because I certainly wouldn't want to be the cause of him getting sick or worse, on the other hand, that sound stressful for those who are not using to having to think so much about it. It would certainly cause me to limit interaction with a group where I had to put SOOO much thought into that type of thing.

 

I am thinking the reason they didn't tell you is because they DIDN'T want to hurt your feelings. I doubt they had mean intentions.

 

 

:iagree: My kids live on PB&J and drink milk with every meal. It would be really tough for us to even interact with your family without changing our lives dramatically. I feel sure your friends didn't tell you because they didn't want to hurt you. They just wanted a place where they could go a be free to be themselves and do what they do without putting your son in jeopardy.

[chickenpatty]

I'm sorry. I would feel very hurt, too. ((hugs))

[Sandra in FL]

lincap,

 

Have you considered testing the level of an amino acid called histidine (blood test)? When I had my son tested using NutrEval (from Genova Diagnostics), his histidine and gylcine were very low. I supplemented with l-histidine (under the care of a natural doctor) and his reactions are much less now.

 

In addition to the precautionary stuff that you do for your son, maybe you should research the reason for such extreme reactions.

 

If you do a google on histidine and allergies, you'll find lots out there. Here's a link for some people who use it for allergies

 

http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=731019

 

My ds has severe reactions (on contact) to eggs and dairy, but I never ask anyone to eat differently for him. The most I'll do is if they're guests in my home, I'll ask them to wash their hands after eating. I don't take him to church on Easter Sunday (too many eggs around).

[Dobela]

I am so sorry. I know what it is like to be excluded - and for something you can't control. It does hurt. I babysat a child with cystic fibrosis and what was needed to keep him healthy was daunting, overwhelming really. The special foods, the meds, the need to protect from any illness... The daily battle against death. We were homeschooling and found that some families, as much as they liked the child and had compassion, found it difficult to consistently remember the 'rules of interaction' and I found that some avoided us or stopped inviting us to activities. I admit I was relieved when he moved and we no longer babysat him. Then, we brought home our dd. She was 14 weeks premature and had serious immunity issues. She could be out some but it was imperative that she not be handled or coughed on or sneezed on, plus she was having serious eating issues including aspiration. Some people understood, but not everyone. One family in particular just resisted that I was putting up boundaries and that their children could not 'relax and just be kids' around her. I even had to hang a sign on her baby carrier and stroller that said, "Stop, Do Not Touch". Those times with these children has made a huge impression on me. While my dd has outgrown many of her issues, we still have occassional comments like, "Oh, did you decide it is ok to touch her now that she is 3?" or "I see you over reacted when she was little. She obviously made it thru ok." Yet they have no idea what al we did or went thru to keep her healthy. I can't imagine what you go thru every day.

 

As much as anything I hated always living my life on guard, on edge, and feeling like I had to be ready to pounce. I could not find a baby sitter for my dd and found myself increasingly isolated. My son was also becoming isolated but my parents would at least take him to activities.

 

I went to homeschool activities because, in part, I wanted interaction with other moms. I wanted to talk to other adults LOL. I found that for those relaxing interactions to occur I had to make an effort to see the other parents without my child. I had to schedule Moms Night Out, or a coffee get together at a coffeeshop, or something similar.

 

Sadly, I also learned that much of my venting and sharing of frustrations had to be with parents who had BTDT or had similar concerns/issues. Other families just didn't know how to process this or respond. Once I started that the reponse to me and my family changed. I also learned who was my friend, and who wasn't.

 

:grouphug: I hope this resolves in a positive way for you with no hurt feelings. You will be stronger for it, but I know you are tired, frustrated, and hurting. :grouphug:

[littleWMN]

I know it is a sacrifice and hard to ask them to limit their diets one morning a week. I do. I offer to buy them foods too. And I have. And I would do it for another child.

 

I am most hurt about the way they lied. They told other friends not to tell me about this other group. That hurts.

 

After holding my son's limp dying body in my arms, I cannot help but ask others to be cautious near us. He is much more allergic than most kids. He cannot touch most public surfaces (library, park etc) without getting hives on his hands. He wears gloves in public. Gloves. White gloves everywhere at an attempt to keep him from accidental exposure to his skin. We wipe down every surface we can in public that he touches. We carry white sheets with us to cover any place he is going to sit on. A specialist we saw told me we would be lucky if he lived past 10 yrs old. The severity of his skin contact reactions surpasses anything they have ever seen and we were told if he does eat an allergen most likely an Epi-Pen will not save his life.

 

It is not an easy life. It is hard to make friends. It is hard to find people who respect his fragile life. Most of our family isn't willing to make accomodations for him. I just want him to have friends and feel normal. He knows he is different. He knows others eat safe for him.

 

I sometimes think if he was in a wheel chair everyone would accomodate him.. but since his disability is hidden it is easier to walk away from him than accomodate.

 

I will talk to the moms. Just not ready too. I will just cry and need to get that over with first.

 

We have protected him well and he hasn't had a reaction in months.. so I always have in the back of my mind that there is that possibility that he is outgrowing some of it.

 

I'm so very sorry and I certainly understand why you are hurting. :(

[Word Nerd]

 

I am thinking the reason they didn't tell you is because they DIDN'T want to hurt your feelings. I doubt they had mean intentions.

 

I agree, and I'm not sure it's fair to call what they did backstabbing. I'm sorry for parents and kids who have to deal with such severe allergies and am sure being excluded hurts.

Edited February 24, 2011 by WordGirl

[In2why]

Hugs to you too! Big ones.

 

You understand the isolation. And I can now see the mortalilty that has been mentioned here..

 

These 2 are still active in our group and we resume from our winter break next week... so I just find it uncomfortable. I now know that they started this other group and kept it secret to keep us from joiing and dealling with allergies 2x a week instead of 1x a week.

 

Just wish they told me in the Fall. A simple "hey we are starting this other group and don't feel we can accomodate his safety".. instead of this around the back way.

 

I do know of 4 other food allergic famillies near me. 3 go to public school and have had reactions requiring epi-pens in school and 1 is in my homeschool group.

 

My interim pastor at my church wants to make food allergy awareness part of my church's mission but ... the congregation ain't quite there yet.. "coffee hour" is just too much fun right now. Awareness is there..

 

OH here is a news story about us from March 2009!

http://www.wcsh6.com/news/health/story.aspx?storyid=102501&catid=8#comments

 

There is a video of what aired on the news... the top pic turns into a video if you wait a min for it to load.

 

 

I totally agree that they should have told you. It is totally understandable that they would want another group where they could just relax though. I don't think they were trying to hurt you. At first I thought they had left your group because they didn't want to continue abstaining from the foods your son is allergic to. But they are still coming, they are just doing their own thing too.

[SailorMom]

No advice, but I feel bad for you and your son, so :grouphug:

[laurad1125]

:grouphug: I'm sorry you were hurt. Relationships are so tough some times.... If I had been in that situation I would hope I would have been able to talk with you about it, but I just don't know.

 

One thing I haven't seen mentioned is that while to some the accommodation asked for seemed small, we don't know how stressed people already are. Homeschooling moms already have a lot on their shoulders. Add in the financial, social, family, other health concerns that most of us have and I'd guess that most homeschool moms are already pretty stressed out. Just something to consider when trying to understand why something avoiding foods for a bit could have been too much to handle.

[lincap]

I feel so much better reading what everyone says. I live in such a bubble that it is hard for me to see other people's perspectives and protect my son at the same time. The kind supportive words mean so so so much to me. And the like stories make me feel not so isolated.

 

 

lincap,

 

Have you considered testing the level of an amino acid called histidine (blood test)? When I had my son tested using NutrEval (from Genova Diagnostics), his histidine and gylcine were very low. I supplemented with l-histidine (under the care of a natural doctor) and his reactions are much less now.

 

In addition to the precautionary stuff that you do for your son, maybe you should research the reason for such extreme reactions.

 

If you do a google on histidine and allergies, you'll find lots out there. Here's a link for some people who use it for allergies

 

http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=731019

 

My ds has severe reactions (on contact) to eggs and dairy, but I never ask anyone to eat differently for him. The most I'll do is if they're guests in my home, I'll ask them to wash their hands after eating. I don't take him to church on Easter Sunday (too many eggs around).

 

I will look into this.. thanks

[Laurie4b]

So sorry for your hurt . The energy expended in that level of vigilence is just so high that I can see why it would be nice to be able to let down just a little...

 

I do think your friends should have told you, and I totally see why you were deeply hurt. It just seems so unfair. As others have said, they were probably trying to avoid hurting your feelings (and making themselves uncomfortable) and ended up hurting you more. I"m really sorry.

[Crissy]

Linda,

I have been thinking of you and your son all day.

 

I posted earlier in the thread about the fear that those of us without allergic children feel, but I have been wondering today how I can change that.

 

When you have the time and the energy, will you please help us to understand what we can do?

 

I talked about this situation with my 12 year old son, and he was so very sad for your son. He said he would never want to lose a friend because his friend has allergies. He asked me what he could do to make sure that never happens.

 

I also wonder what we might be doing in our regular, daily routines that could be compromising the health of other children.

 

I know this whole situation is hurtful for you, but I hope you might have the energy to help some of us to be better friends and neighbors.

[lincap]

Linda,

I have been thinking of you and your son all day.

 

I posted earlier in the thread about the fear that those of us without allergic children feel, but I have been wondering today how I can change that.

 

When you have the time and the energy, will you please help us to understand what we can do?

 

I talked about this situation with my 12 year old son, and he was so very sad for your son. He said he would never want to lose a friend because his friend has allergies. He asked me what he could do to make sure that never happens.

 

I also wonder what we might be doing in our regular, daily routines that could be compromising the health of other children.

 

I know this whole situation is hurtful for you, but I hope you might have the energy to help some of us to be better friends and neighbors.

 

This is so very thoughtful of you.

 

There are things that non-allergic people can do. Wash hands after eating, something so simple can really help remove food residue off of hands. If you know you are in the presence of a child with allergies don't eat their allergens near them. Don't offer them food. Don't make fun of their restrictions. Try to teach kids not to say things like "WHAT!! YOU CANNOT EAT ICE CREAM!!!" Teach your children the severity of food allergies. I am on an allergy forum and there are countless stories of food allergic children who are bullied. Sometimes bullies will take peanut butter and smear it on the child's lunch bag or say things like "I have peanuts in my pocket" and pretend to throw them at the child. (on and on... the bullying is bad). Teach your children to respect other's differences. Teach your children the signs of anaphlaxis.. or ask a food allergic child's parent to share with your their "allergy action plan" that tells when to give an Epi-Pen. Don't doubt that there is an allergy. So many people say "ah it can't be that bad" or "so what? he sneezes or something when he drinks milk?" If you invite a food allergic child to a party ask the parents wha tyou can do to make it more comfortable for them. Most will bring a safe treat for their child, but offering to make a dairy -free cake is not that hard and is such a nice gesture. If during church or other activity functions asking if there are any children with food allergies when setting up snacks/ lunches. Being an example to others. If you know a food allergic child connect with their parents and ask what are safe foods for the child to be around and if you are at the park, wipe hands with baby wipes, show what food you have and just have your child sit with the allergic child. It is so nice to see Charlie be able to sit with his friends and eat. Even if they each just have an apple.

 

As for what we can do about the health of kids in general with allergies... I wish I knew..

 

Compassion, understanding, and not second guessing goes a long way with a food allergy family.

 

Thanks for asking that.

[MamaBearTeacher]

I just wanted to say :grouphug: to you and prayers for your child. I also pray for a world that is more accomodating for all children.

[lovemyboys]

:iagree: That is my son to a T -- a picky eater with sensory issues who will not eat if it's something he doesn't like. .........

 

If a playgroup was THAT restrictive, I couldn't go. I'd be too freaked out that I would miss something and inadvertently cause a reaction or death of another child. That would be too much to bear and add too much stress to my life. OP, I truly don't think these ladies were doing this to be mean. I know you're hurt and I understand why you're hurt. If I had to guess based on some of the things you said (your ability to confide in them for one) I would guess that they felt an incredible pressure from you. If they knew this was the only time you could let your guard down and you told them that on multiple occasions, they probably felt an enormous sense of guilt that they couldn't keep doing it. From their perspective I bet avoiding the issue was the kindest thing they could do in their minds. If they hadn't been caught and you never found out, it certainly would have been kinder than a confrontation where they said, "We just can't do this anymore -- sorry."

 

Agree with Emmy and Julie. We had a dairy allergy like Emmy's son and a picky eater like Julie's. And we have friends in our groups now who carry their epi-pen sets with them constantly.

 

I'm so sorry for your pain and hurt right now. I think Emmy and Julie have said it well. My impression would be that your friends didn't know how to talk with you about this, they probably came to their decision after much angst and discussion and tried to keep it quiet to avoid hurting you. They were obviously discreet since you're just now hearing about it. But the result is that they've hurt you now.

 

It's a very tough situation. If the kids involved were older, it would be different, but at these ages, the pressure to adhere to guidelines as strict as these would make it very difficult. Getting together on a weekly basis .... I'd find it tough too.

 

(I'm mentioning this gently....) Maybe this isn't the season for this kind of group activity.....

 

 

I am so sorry. I can totally understand why you feel hurt. It sounds like they feel it's too great a burden to avoid eating those foods before playing with your son - and to be honest, I don't blame them. I think you are asking for too much - I understand why you want it, but I think it's too much. They should have come to you and said - look, this doesn't work for us anymore. We'll have our kids wash their hands and faces and brush their teeth - but we're not limiting their food anymore. Unfortunately, they probably felt too awkward initiating the conversation. Which by comparison would have been far less awkward than the situation they are in now!

 

I hope you can find a way to communicate your thoughts - were it me, I would email them and then follow up with a conversation. An email gives an opportunity to communicate your thoughts clearly without getting too emotional (I tend to clam up in confrontation).

 

As an aside, I will mention I have a son that has an anaphylactic allergy to milk so I do understand where you are coming from.

[Colleen in NS]

I live in such a bubble

 

You will probably live in that bubble for awhile longer, esp. because you also have two younger children. But enjoy that bubble and don't fret the time and energy spent keeping Charlie safe. What you sow now, you will reap later, and you will be thankful for your bubble-time. :D

 

I posted earlier in the thread about the fear that those of us without allergic children feel, but I have been wondering today how I can change that.

 

This is so kind. I have a few friends who have asked me this same thing, and it really meant a lot to me.

[RahRah]

Wash hands after eating, something so simple can really help remove food residue off of hands.

 

Hands, face and rinse mouth....

 

We learned the hard way simply washing hands isn't always enough - a simple kiss goodbye from someone with food residue on their mouth (someone who specifically washed their hands) can cause a reaction too.

[hsbaby]

I am so sorry for the hurt you are feeling. As a parent of two food allergy kiddos, I can empathize (though your sons issues sound far more sensitive). I understand that it puts others out to be around a child with food allergies...but for one morning a week? C'mon...I don't think that's asking a lot. I host a group at my house with 6 families. It is a geography group and everyone brings food from the country we are studying. Fortunately these women are amazing about ensuring no peanuts/nuts (including things processed in a plant where cross contamination might occur). I always get emails asking if something is okay to be around my dds. Never a complaint. I say that to point out that there are people willing to adjust their diet one day ( and you're talking only one meal!) a week. Again, I am sorry you are hurting. Food allergies are a scary thing.

[SweetBean]

I'm so sorry that you are going through this. All three of my children have had different food allergies, some of them have been life threatening. I know the fear and isolation you are talking about. However, I do think it is too much to ask the other children to not eat those foods, even if you are only asking them to remove the obvious sources of those foods. I belong to a homeschool group, in which another mom of allergic kids is often making the same requests that you have made. It just is too much. I have had a hard enough time finding foods that my kids can eat, without also eliminating the foods that her kids are allergic to.

 

I do think they should have talked to you about it. I would have a talk with them if I were you. See if you can work it out.

[Crissy]

There are things that non-allergic people can do. Wash hands after eating, something so simple can really help remove food residue off of hands. If you know you are in the presence of a child with allergies don't eat their allergens near them. Don't offer them food. Don't make fun of their restrictions. Try to teach kids not to say things like "WHAT!! YOU CANNOT EAT ICE CREAM!!!" Teach your children the severity of food allergies. I am on an allergy forum and there are countless stories of food allergic children who are bullied. Sometimes bullies will take peanut butter and smear it on the child's lunch bag or say things like "I have peanuts in my pocket" and pretend to throw them at the child. (on and on... the bullying is bad). Teach your children to respect other's differences. Teach your children the signs of anaphlaxis.. or ask a food allergic child's parent to share with your their "allergy action plan" that tells when to give an Epi-Pen. Don't doubt that there is an allergy. So many people say "ah it can't be that bad" or "so what? he sneezes or something when he drinks milk?" If you invite a food allergic child to a party ask the parents wha tyou can do to make it more comfortable for them. Most will bring a safe treat for their child, but offering to make a dairy -free cake is not that hard and is such a nice gesture. If during church or other activity functions asking if there are any children with food allergies when setting up snacks/ lunches. Being an example to others. If you know a food allergic child connect with their parents and ask what are safe foods for the child to be around and if you are at the park, wipe hands with baby wipes, show what food you have and just have your child sit with the allergic child. It is so nice to see Charlie be able to sit with his friends and eat. Even if they each just have an apple.

 

As for what we can do about the health of kids in general with allergies... I wish I knew..

 

Compassion, understanding, and not second guessing goes a long way with a food allergy family.

.

 

Thank you for all of this, but especially the bolded part. We have always known to wash hands and keep our peanut butter at home, but understanding signs and such never occured to me.

[Dina in Oklahoma]

I can't believe no one has mentioned this yet. Are you in a large enough area for more than one homeschool/social group?

 

Start (yes, it is a lot of work) a group for kids with food allergies. Set the times from 2-4 in the afternoon, no food allowed at the activities/outings. There may be other white glove kids hanging around home with no one to play with.

 

While your son's allergies are severe what he is allergic to is not uncommon. I"m sure there are other kids who don't eat dairy, egg and peanut. You might come up with someone who can't have wheat or corn. Maybe everyone can agree to some kind of rice dish for lunch on meeting days.

 

Not only would you find someone your kid can play with, you'll meet other moms who are struggling with very similar issues. You'll be able to brainstorm with other moms ways to host holiday activities that are safe for all your kids. You'll have support and possibly a recipe exchange.

 

:iagree::iagree::iagree: I certainly understand your pain as I live with an "invisable" diease also. No one can fully understand unless they experience it first hand.:grouphug:

 

However, Parrothead posted my response almost verbatim. Starting your own group would be a blessing to your family as well as those with similar issues. Contact local hospitals, churches, daycares, dieticians,and organizations working with food allergies etc. This could turn out to be the best thing that could have happened!!! Just imagine friends for your child that understand what he is going through and mothers that you can relate to! Cheering you on!!!:hurray:!:party::party::hurray:

[Night Elf]

:grouphug: It's hard when our children are different from others around us. I realize your situation is different because your son could be affected medically, but I can relate to what you're feeling. I have had people avoid me because my son has Aspergers. One huge area for them was his sensory issues. I had 3 separate horrid incidents that rocked my world, and frankly, I don't think I've ever gotten over them.

 

Maybe you could try looking for quality over quantity. Do you know of 2 or 3 families who don't have a problem with food choices that could affect your son? Maybe you can just have regular playdates with them instead of trying to orchestrate an entire group.

 

I hope you get some answers and find a solution that makes all of you feel better!

[Rebecca]

I haven't read all the replies.

 

But- just wanted to say how much my heart hurts reading your post.

 

We were there with our son when he was 5. We were so there. It is so hard.

It is so hard to live isolated and alone and just bear up under it because others can't make a sacrifice one time a week. We experienced this in a church body and with very close friends.

 

I can close my eyes remembering the pain, fear, and lonliness.

 

It doesn't always work to start a group (BTDT- and read that post) but it certainly doesn't hurt to try and to be proactive.

 

It stinks to have to depend so much on others willingness to "inconvenience" themselves and do those proactive things.

 

I am so so sorry.

 

My son was anaphylactic to those exact foods at that age as well-

and had contact allergies to others too. He is eight now. We have come so far.

 

I don't have any words to say other than deepest empathy and my family would do that protocol for you!

 

Rebecca

[Miss Sherry]

Well, I would be hurt to if I were in your situation. But it could be that they are already functioning on their last bit of energy and feel they just cannot add one more extra bit of effort to their week. But, whatever the reason, since they are not willing to go the extra mile once a week, I do think you need to seek out some other people to socialize with.Now that you know they are simply not going to do what it takes to socialize with you and your son once a week you cannot trust them anyway that your son will always be safe around them. I think you have been given some good ideas regarding looking for other families dealing with food allergies.

 

I am sorry you have been let down by your friends. I hope you are blessed with someone that will be a better friend to you and your son. :grouphug:

People can be just plain selfish.

 

 

My son (5 yrs old) has multiple fatal food allergies to dairy, egg and peanut. He suffered anaphylaxis from the spit of a child who had just eaten cream cheese, so we ask that his friends and homeschool group avoid eating dairy, egg and peanut before seeing us. I am sure it is a burdern to them, but I so so so appreciate their willingness to allow me to "let my guard" down while they play. When we are together it is really the one time I can just forget he has this invisable disability and let him have fun. Our group meets once a week. When he plays with random kids at the park or church etc I am on edge and it usually ends with me giving him benadryl due to mild reactions.

 

Well I just found out that 2 moms in my homeschool group started another homeschool group last summer and specifically kept it from me and asked others to keep it from me because the did not want to deal with his allergies. ouch. They both approached me in the fall with their "busy" schedules and were unable to take their turn teaching in my homeschool group. I lessoned their burden and I taught in their place. Now it makes sense... they were too busy setting up their own group.

 

They decided it was better for my son not to join. Not me.. his mother. They did. One of the moms I considered to be a close friend and was at the birth of my 3rd son. I feel so yuk.

 

I know I need to talk to them about it, but I am not ready. I am still in hurt and shock mode. I confide in these 2 women about how fragile his life is and how we live in such a tiny social network to keep him safe. I confide in these women when I get depressed or have dark days about how others discriminate again food allergic children. I confide in these women.. I feel so back stabbed.

 

I guess I need time to get through these emotions. I am just so hurt.

[regentrude]

Coming in late here...

if I had a child like this in my circle of friends, I would be terrified that something my kids and I did could cause him a reaction. I would feel that I can easily avoid bringing the particular food to the gathering - but if the allergy is so severe that it would hurt him if my children had eaten the food in question prior to coming, or if they had contaminated clothes etc, I would not want to take the responsibility for this child's life. I'd constantly be on edge and afraid that some oversight of mine would cause harm. So, I can understand that people just don't feel they can take this upon themselves.

I think they are probably not aware that they hurt you. they might honestly think that they are distancing themselves to protect your child.