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


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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.

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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.

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:grouphug::grouphug:

 

Wow! That is really really hard and I'm really sorry about your son and the stress level that you go through daily to keep him healthy and alive.

 

Back when all I had were littles and we did lots of playdates and whatnot my kids seriously lived on milk and peanut butter sandwiches. I mean every.day. They did not like lunch meat. They would occasionally eat a grilled cheese. I couldn't have afforded to buy a non-dairy milk substitute for their breakfast cereal. And when we didn't eat cereal, we ate scrambled eggs or muffins baked with eggs and milk.

 

I think you asked them to make a bigger sacrifice than they were willing to make. I don't think it was wrong to ask but I also don't think it's wrong for them to say it's just not possible. Obviously you have had to figure out how to go dairy, egg, peanut free. I think that would rock my world to have to do that. :grouphug:

 

And they did not let you know in a very gracious way that they were not willing to go dairy, egg, peanut free for a couple meals a week or whatever it would come out to. They probably wanted to avoid confrontation that might have turned ugly. I don't know any of the people involved.

 

I think you need to ask yourself if your feelings are hurt because they went behind your back or if your feelings are also hurt because they don't want to go dairy, egg, peanut free for you. I'm just thinking about this from my own perspective. I had a lot of little kids and until the oldest was about 7 life kept getting crazier and harder and more stressful. I have particularly picky eaters and a very very low food budget. All of those things, many young ones, picky eaters, pinching pennies is stressful in and of itself. Pile it all on and life was hard in those years. I'm sure you are a very lovely person but I don't think I could have piled on one more thing. I am selfish. I needed playdates to relax and de-stress. If I had to go peanut, dairy, egg free before we had the playdate I would just stop going. I'm very sorry.

 

You stated that you did let your child play with other children but that you were more nervous and on edge. So it's not beyond the realm of possibility. You just would prefer not to be on edge during the play date. Maybe a compromise would be that your mom friends could just tell you what their dc had just eaten and how long ago...knowledge is power....and maybe they could rinse it all down with some apple juice or maybe they would brush their teeth before coming. I can see that being more reasonable to request than forbidding certain foods. I couldn't have done that with my particular dc on our particular budget. :grouphug:

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I have to agree with Emmy.

 

While I COMPLETELY understand you needing to protect your child from dying, totally get that. Sounds like you really have to be viligant for his sake.

 

On the other hand, 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.

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:iagree:

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.

 

My son didn't have an anaphylactic reaction, but was very allergic when he was a young child, and the doctor's were warning me that his next reaction could be anaphalactic, and to be prepared for it to happen. He was in daycare at the time and while I sent his food daily, I knew that others would be eating peanut butter etc at home (the daycare excluded it) and that i couldn't control it. I trained the daycare person to deal with his reactions and knew I needed to be the one to limit his exposure from there. I wouldn't trust anyone else to be as understanding or diligent as you need to be with a child with this severe of allergies. I would look into finding friends who have children with similar allergies, they are likely to understand the importance and challenges better. As another note, I know as a parent with a 4yo who has a moderate dairy allergy, and a family history of allergies, I have still screwed up and given my children things they are allergic too (my last was giving my 4yo a Tootsi Roll sucker)!

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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.

 

It is hard for other families to deal with us, and we can appreciate when they do, but we can't expect that this means they will bend additional parts of their lives for us. We need to enjoy the time we do have together. This can mean loneliness, but the loneliness is that of our situations not of being personally rejected. 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 certainly don't think you should make the assumption that because they were busy last fall equals they were busy excluding you. That's how you feel, that's not what you know.

 

I know you're lonely, and this is frustrating. I can think of many situations, more then I can count, where my son has been excluded or had to miss out on things just because of his diet. But please don't further cut yourself off from relationships because of this. It's in these times that you form the good friends who will go to great lengths for you and your family.

 

And consider making this easier by providing food to your group on occasion. It might be a good idea for the other kids, as they get older, to see what your son deals with every day. With my son's epilepsy I find it makes everyone more comfortable for me to not just give scary warnings, but to have little moments now and then that show the normal day to day stuff. What he eats. How we make it. What happens if something goes wrong. Maybe if they eat the food and see you use benedryl after a random park interaction they will feel more comfortable.

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:grouphug: As a fellow "food allergy" mom, I'm just so, so sorry. I truly see both sides of this issue. These situations are so complex, and I am so sorry you feel betrayed. I know it is so hard not to take things personally. I hope you are able to move past your hurt feelings soon. :grouphug:

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Well I'm sorry you got your feelings hurt.

 

However, you put an aweful lot on other people. I'm sorry that's the only time you can let your guard down, but honestly, it's your job to keep your kid safe, not anyone else's. You were asking them to safeguard your kid so you could have a break from doing that.

 

Asking one family over to play and asking them to refrain from eating certain things before hand is one thing. Asking an entire group to keep from eating what are basically mainstays of most/many meals every you get together is a lot.

 

As for having confided in these women time and again, it sounds like told them so much, you probably scared them. They probably felt under huge pressure to make sure they didn't feed their kids the wrong things. And they just didn't want to live under that pressure any more.

 

Yes, it would have been nice if they'd told you, but would that have made it any better? "Hi, we really like you and all, but we can't take the pressure you're putting on all of us to not kill your kid. Sorry but we're starting our own group."

 

No matter what could have been said/done, you'd still probably have your feelings hurt. What you have to deal with is very hard. People that haven't dealt with it don't know, or do know and are grateful they don't have to deal with food allergies. They weren't out to hurt you, they were probably trying to destress their lives a little. I know you don't mean to stress them out, but you probably did.

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I have to agree with Emmy.

 

While I COMPLETELY understand you needing to protect your child from dying, totally get that. Sounds like you really have to be viligant for his sake.

 

On the other hand, 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: I am sorry that they didn't come to you and I know that hurts your feelings. It also magnifies it because it excludes your child and that is the worst feeling ever.

 

Yet I know that I would have a really hard time being asked to abstain from the foods that your child is allergic to before seeing you guys in a group situation. Beside the hassle of having to completely change how we eat, I would be terrified that we might forget, or the kids would get into something on the no list. That would put me on edge, so much edge that I would prefer not being in that situation. But I totally would understand not having those foods present at activities and think that is reasonable to ask.

I also believe that they didn't tell you because they didn't want to hurt your feelings. I think sometimes as women especially we skirt around things trying to avoid unpleasantness at any cost, and usually it makes it even worse in the long run. :grouphug:

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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.

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Linda,

 

I don't think you were asking too much. If they couldn't do it, they could have been upfront and honest.

 

 

 

:iagree:although some people find direct confrontation painful or rude. Personally, I appreciate someone "fading" from my life over a "well, we won't be calling because X, Y, and Z". I tend to do it, because of the "do unto others" rule, although I *try* to do the variation "do unto others as they would have them done unto them", but we don't always know what someone else would prefer.

 

Also, for all you know, one or more of them was going nuts with worry THEY would do something to set off your child, and just couldn't stand the tension and worry any more.

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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.

 

:grouphug: No advice. Just sorry.

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...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.

 

 

:grouphug:

I can't imagine how hurt you are, that your friends felt like they couldn't talk to you openly about this.

 

Personally, I think you are asking too much. I also have a son with potentially life-threatening multiple food allergies, and I completely understand how hard it is and how you absolutely cannot ever let down your guard. However, this is your family's burden to bear, not the burden of the entire homeschooling group. There are simply some things you miss out on when your kid has different needs. :grouphug: It really stinks.

 

I'm so sorry. For whatever reason, they didn't feel like they could talk to you about this, but I'm sure you will handle it with grace. Food allergies are a whole different world you can't appreciate until you are there. Just knowing my kid could die because someone else likes peanut butter makes me kinda edgy in public places.

 

Best wishes.

and one more :grouphug:

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I understand why you are hurt - you feel you were deceived. But I would try to look at it from their pov. Perhaps they felt that if you knew about their new group, you would be hurt and they'd be right. They probably thought they were protecting you from that. A bit shortsighted, to be sure, but understandable to a certain point. They really should have told you. They should have realized you would eventually find out. But, still, you might ask yourself if you did anything at all to cause them to be so afraid of telling you. It's kind of like a child who lies because they are afraid of being punished - not right, but understandable. I have no idea how the whole thing went down in the first place - you asking them to please limit their children's diets before you all got together as well as subsequent requests or mentions of your son's allergies. But you may come to the conclusion after you replay it all in your mind that perhaps you were at least a little to blame for their being afraid to tell you. If not, then they are/were behaving in a very immature manner indeed.

 

You said it was great to be able to let your guard down and just relax. Perhaps they would like to let their's down as well. You can't know how much stress you are putting on any individual member of the group when you require them to control their kids' diets in such a way. I venture to say that very often one or more of them got up on the day of the get together, fed their child an egg or cereal with milk, and only then realized what day it was. Days run into each other and we don't always have our sharpest mental faculties first thing in the morning.

 

Still - they should have told you and for that I'm sorry. People do dumb stuff. The only thing you are really left to do is to try to understand and forgive them.

 

If it helps at all, when my oldest was five, I had a 4yo and a newborn. We only had one car which dh took to work, so we stayed home all time. This was the case until my oldest was 13. By then, I had two more children. We live in a neighborhood with very few children and none who homeschooled so they never had any playmates other than each other. They lived through it just fine. Looking back, I'm actually thankful it worked out that way. All that to say, if your children never experience friendships with other children besides their siblings they will be just fine. Your children do not need friendships outside of your family, so if you stay home away from other children who could present potentially harmful circumstances for your ds, don't fret that he and your other children are missing out. They really will be just fine and perhaps even better off.

Edited by Kathleen in VA
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I'm so sorry. It must feel horrible to be the one with the allergic child, and to be the one left out.

 

My youngest son's gf has severe allergies (lessening as she ages). I am always on edge when we are out in the world. Everytime she gets in my car, I say "Epi- pen?" She says, "Got it". (A couple of times she did forget to grab it, and we had to go back. We're all just human.) If she were a child who couldn't communitcate her needs clearly (she is 17; is very straightforward with her questions about food ingredients etc)), and her allergies were as severe as they used to be, I would be even more scared.

 

What if the unthinkabe happened? I could never forgive myself. Her poor mother.

 

The responsibility is so great.

 

I'm sorry. The only thing I can think of is to give the benefit of the doubt. Perhaps they just aren't confident in their ability to protect him from some fluke?
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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.

 

:grouphug: My heart aches for you! I thought my DD was going to die in my arms this fall (epilepsy) and it is a terror I wouldn't wish on anyone.

 

I can see how hurtful it would be since they first agreed and then changed their minds without even letting you know!

 

There is something better waiting for you and your family!

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Linda,

 

 

 

If they couldn't do it, they could have been upfront and honest.

 

:grouphug:

 

:iagree:I'm sorry this hurt you and I think they should have told you it was too much for them. However, I could never do what you ask. I am just incapapable of it. I am an ADD scatterbrained type person and it would send me into fits to have to remember to make sure my whole family didn't eat a certain thing before being around a certain person on a certain day. I just could never do it. I can't even remember my own appointments and things that effect me and my kids directly - like I never remember to give my kid her antibiotics if she has an ear infection - never. And that's horrible! But I just can't. I have to ask someone else to help me remember, although now that she's almost 10, she pretty much does herself. So, just saying this to help you understand that to some people, it is a lot to ask. If this happened in our group, I would simply drop out.

 

:grouphug: to you anyway and I'm sorry your friends weren't honest with you. That is what would hurt me.

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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.

 

You are a good mom! and I cannot imagine what this is like for you.

 

I don't know if this helps, but I might see it this way: These friends may really be struggling with the mortality factor. They can't help, but think of their own kids and what it would be like to lose one. They may not be able to handle that...emotionally. When they see what you have to deal with it becomes so "real" to them, and they don't want to deal with those strong emotions regularly. I realize you don't have a choice and my heart goes out to you because of that :grouphug:.

 

Also, they may not be able to handle the possible grief of their own kids, should your son pass. In a way, they are trying to protect their kids from the pain of loss.

 

i'm sorry. Is there a support group thru your hospital? It may be to difficult, on various levels, for someone who doesn't HAVE to face this...to understand.

 

Again, it doesn't make the way this went down okay. :grouphug:'s

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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.

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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.

 

:iagree: I feel for you as well as it sounds that it was handled in a very hurtful way. My son has many severe allergies as well and I have never asked others to limit their own food consumption for my child's benefit. On the bright side, I do think this will get easier as your child gets older because hopefully you won't be dealing with things like the spit of another child.

 

I know it is tough and I was so worried about my son all the time when he was younger and especially when he was at preschool.

 

Lisa

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Guest Dulcimeramy

I am so sorry. :grouphug:

 

We would be your friends, and we would accommodate your son on playdate days. If you are in Central Indiana, pm me and we'll set up a playdate. My youngest son is 6.

 

No one, except for other parents/grandparents of food-allergic children, will make a commitment to changing their own habits to accommodate someone else's child. They might for a time, but not long-term. It is too much to ask of people. Telling other people what to eat is too personal.

 

It stinks. I'm sorry.

 

Are you part of FAAN? (food allergic anaphylaxis network)

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IMHO, you are NOT asking too much. It really is not a big deal to know that every Thursday (or whatever day) you will be eating this specific breakfast and this specific lunch. Surely people can come up with something, if they care to really try.

 

I'm sure you are vigilant every moment even with this group. It's not too much to ask to have just a little breathing room with people who care and you trust. I am sad that people think you are asking too much yet can say they wouldn't be willing to change a couple meals. :confused:

 

:grouphug::grouphug::grouphug:

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What you describe isn't totally uncommon in a homeschool group, even without the food allergy issue. :glare: Homeschool moms in general tend to have rather... strong personalities. Ahem. I've seen it happen several times in our local groups for one reason or another. So please know that it's not you, it's definitely them. Don't take it too personally.

 

You restrictions are not that great (dairy, egg, peanut butter.) We would have to completely change our breakfast, but it would be a great opportunity as a family to talk about foods and allergies and loving others.

 

Good mothers should be excited for an opportunity for their dc to minister to another child.

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I agree with a lot of what everyone has said. My 3rd child had severe, though not fatal dairy and other food allergies. Bleeding hives from head to foot really made me vigilant. And my 4th has a severe cashew allergy. But that's my cross to bear, not a large group's. And honestly, 90% of people don't have a clue about these things and may not "get" that things with casein in them that aren't just glasses of milk or hard boiled eggs can be offenders just as much as a cracker containing casein or challah bread.

 

I can ask people not to give us these things or not to bring them into my house, but I could never ask a large group to avoid eating certain things. The fatal part is really scary. I have a friend with a fatal peanut allergy and I can see how that would scare other parents from being around.

 

You don't want to be the one whose kid found a goldfish cracker in the car and ate it before group without you knowing and kills their friend on accident because of it, kwim? I can somewhat see why they would try to keep it from you. They didn't want to make you feel bad or left out with such a delicate situation. Could you maybe find an allergy support group in the area and match up with other families that way? You don't have to be alone, but it will be harder to find people who will understand and accommodate. Many more people are starting to "get" peanut allergy awareness but other allergens are completely off their radar. My MIL thought it would be fine to get all the kids cheese and crackers with ice cream at my 3rd's 1st birthday party even though I specifically told her not to and we had been explaining the severity for a year. Even with the projectile vomiting and hives when she ate a piece of cracker on the floor did not make an imprint on them. It's so frustrating. I can't imagine the stress of having a kid with a worse allergy.

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I am so sorry. :grouphug:

 

We would be your friends, and we would accommodate your son on playdate days. If you are in Central Indiana, pm me and we'll set up a playdate. My youngest son is 6.

 

No one, except for other parents/grandparents of food-allergic children, will make a commitment to changing their own habits to accommodate someone else's child. They might for a time, but not long-term. It is too much to ask of people. Telling other people what to eat is too personal.

 

It stinks. I'm sorry.

 

Are you part of FAAN? (food allergic anaphylaxis network)

 

That is sweet. We are no where near Indiana. Wish we were! 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.

 

It does stink. I have so many good days where we never think about it (because we don't go out or see anyone else..) then I have darker days.. like today.

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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 don't find my son's GF to be a burden, but that does not stop me from worrying about something terrible happening. It might be insanity on my part...not saying I am not just a little neurotic... but these issues are* life threatening*, so it's not something that is without energy. (And she is nearly grown.) Her mother had to avoid so much when she was little. All those tiny little hands, all the things they could touch without you knowing. All the things they could touch that you thought was safe.

 

People can be terrible to each other, even when they do not mean to be, no doubt about that.

Edited by LibraryLover
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:grouphug: I am sorry, I can't imagine how hard and draining it must be to HAVE to be so vigilant at every moment of your life. You are doing your best.

 

I hope you find peace with this, that your friends are able to explain themselves and that you are able to find a common ground.

 

Again, many many :grouphug:

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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.

 

:grouphug::grouphug::grouphug:

I cannot even begin to imagine that. I just want to cry with you.

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IMHO, you are NOT asking too much. It really is not a big deal to know that every Thursday (or whatever day) you will be eating this specific breakfast and this specific lunch. Surely people can come up with something, if they care to really try.

 

I'm sure you are vigilant every moment even with this group. It's not too much to ask to have just a little breathing room with people who care and you trust. I am sad that people think you are asking too much yet can say they wouldn't be willing to change a couple meals. :confused:

 

:grouphug::grouphug::grouphug:

 

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.

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I agree with the others (one of my kids has peanut allergy). It's unfortunate, but IMO it's too much to ask a whole group not to eat certain things before they get together with your family. I would try not to take it personally. You have to do what you feel is necessary to keep your family safe, but restricting what others eat when they're not in your presence is not only too much for them (as is self-evident by them not including you in their new group), but it's well beyond your control. You can't control what they are eating when they're not in your presence anyway, i.e., you can't trust what they do. I think you have to work on the assumption that members of any group have indeed eaten the forbidden allergens prior to seeing you (kinda like when you can't read an item's ingredients).

 

Is spitting the main issue? Would it be possible for them to brush teeth and wash hands before getting together? (or not spit/wipe/kiss :001_huh:) What advice has your allergist given regarding keeping other people's saliva, etc. away from your ds? As time goes by, I'd probably be considering the level of risk of the anaphylaxis-from-saliva happening. There is never zero risk where the actions/inactions of others are involved, but you have more control over some things (e.g. what happens in your presence) than others (e.g. things that happen/not happen not within your presence).

 

ETA: I can understand why you feel hurt. It would have been much better had they discussed their new group with you ahead of time rather than keeping it "secret."

Edited by wapiti
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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.

 

:grouphug:

This must be terribly difficult for you, and so hurtful. I am sorry.

 

I suspect your friends made their decision partly out of fear.

My children do not have allergies of any kind, but we know children who do. I always worry when we see them whether or not my boys have eaten peanut butter recently. Whether or not they washed their hands properly. What if they tell me they washed but didn't do a good enough job and still have a minuscule amount of PB under a fingernail?

It is frightening to think that our normal routine and self care could be life-threatening to another person.

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That is sweet. We are no where near Indiana. Wish we were! 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.

 

It does stink. I have so many good days where we never think about it (because we don't go out or see anyone else..) then I have darker days.. like today.

 

Oh! Are you by any chance in TX? I'm in FW--let me know if that's close, & we'll get together. Shoot, dh is already gfcf: I might could even bring snacks! :D

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While I agree it wasn't meant to hurt you--they ARE still coming to the playgroup once a week with your child, and are following the rules to keep him safe & give him playmates? And they also formed an additional playgroup where they can be more relaxed? If that is the case I think it makes sense, although I wish they had talked to you about it. If they are still coming to your special playgroup regularly, I don't think it should be a problem if they also go to another playgroup. Most parents take their kids to multiple different activities/groups (although I do understand why it hurt).

(FTR, we are a food-allergy household, but not as bad yet. The baby might be, when he's old enough to be tested. Reacts to everything. :glare:)

Edited by LittleIzumi
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:grouphug:

MY ds has severe food allergies as well but thank goodness does not seem to have the skin reactions on contact as you describe.

 

Maybe you could find a compromise with some of these moms by being upfront and understanding about their concerns. Could you perhaps schedule events such as museum or library events for a short period of time where food would not be the centerpiece and that would hopefully take place an hour or so after a meal? Maybe I am wrong but it sounds like the cream cheese incident happened right after the other child consumed it. Perhaps by scheduling and after lunch for example this would not be an issue if the activity was short enough to not require a snack or if it did, then maybe you could leave when the snack time started. Maybe they would be willing to meet once in a while for short periods of time... Maybe all you would have to ask is their children be fed at least an 1/2 hour prior to the event to avoid any issues as well as washing hands. Maybe you could tell them it would mean so much for you and your child to be able to see them once in a while..

:grouphug:

Edited by priscilla
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I am so sorry that these people hurt you. I can't imagine the burden that you have in protecting your son.

 

I do not have any allergies. No one in my immediate family has allergies. And when confronted with other people's allergies I try **REALLY** hard to make sure I don't violate any of the conditions they tell me. Allergies scare me and I try super hard to be really vigilant and careful. And yet, with all of my best intentions and label reading I make mistakes. Unintentionally. I miss some obscure ingredient that's "bad". And then I feel like a failure for even trying. And I feel guilty that I could get them sick. It's really frustrating.

 

I am betting a hundred thousand times you've had to say, "Thanks for trying, but there is a minute amount of ccc in it that he can't have. Thank you so much for trying."

 

You HAVE to be vigilant - you HAVE to say that. But if you receive the "thanks but no thanks" enough, it gets hard to get back in the game. Especially when it's something that you don't have to face and deal with every day.

 

So maybe they aren't evil. Maybe they just feel like they can't make the cut with "the list" anymore. Maybe it's fear and concern that is driving them.

 

I am not, in any way, saying their actions are OK. They aren't. It was rule and childish and if I were you I'd be hurt too.

 

I am just saying that maybe they have tried really hard - with something they aren't familiar with - and the pressure and the consequences are too much for them to handle. Maybe, and it's just a maybe, that they are actually trying to protect your child.

 

Maybe they know that they can't keep everything from him, despite their having tried. Maybe they are scared and worried that they will be the one - the one who accidentally makes your child sick. Maybe they care too much - and are just terrible at sharing that. Because no matter how you word it - the message is terrible. And, even if they did tell you, it would be impossible to no second guess the reason they give you. So maybe they took the weak way out.

 

But maybe they really are just super worried about your son and want to protect him from their own stupidity and lack of vigilence.

 

I hope that's the case. But even if it is - they stink at delivery. STINK. And I wish I could bring my kids to hang out with you guys - even if they had to shower and brush their teeth before we went to your house. In fact - I would probably hang out with you a lot if that were the case!!

 

((hugs))

 

I wish it were easier for you.

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:grouphug: To both of you.

 

It makes me realize how petty we can about things that do not matter...

 

 

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*

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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*

 

:grouphug: to you as well.

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I'm not really adding much, but this really made me think. If one of my sons' good friends developed an allergy where we would have to modify OUR diets in order to stay friends with them, I don't know what we would do. I think a lot of us are thinking the same thing. It's especially hard with young children, who can't make the decision for themselves.

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I have to agree with Emmy.

 

While I COMPLETELY understand you needing to protect your child from dying, totally get that. Sounds like you really have to be viligant for his sake.

 

On the other hand, 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: It's too hard for parents who don't deal with this on a daily basis to remember all the "rules" for interacting with your child. And, I agree...they were probably just trying to avoid hurting your feelings, and honestly couldn't think of a nice way to say, "your situation is just too much of a pain for us to deal with and we're unwilling to jump through all the hoops you require for us to socialize with you." I honestly don't think I would personally remember to monitor what my children ate (in fact, I couldn't with my older ones, they get their own food) and I would worry that I would inadvertantly cause your child to have a reaction. That stress alone would make me think twice about socializing with you. It's not fair, it's hurtful, it's sad for your son....but it's reality. BTW...I grew up with severe chocolate, banana and penicillin allergies. I know it's hard....but it is what it is.

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What you describe isn't totally uncommon in a homeschool group, even without the food allergy issue. :glare: Homeschool moms in general tend to have rather... strong personalities. Ahem. I've seen it happen several times in our local groups for one reason or another. So please know that it's not you, it's definitely them. Don't take it too personally.

 

You restrictions are not that great (dairy, egg, peanut butter.) We would have to completely change our breakfast, but it would be a great opportunity as a family to talk about foods and allergies and loving others.

 

Good mothers should be excited for an opportunity for their dc to minister to another child.

 

:iagree: Well said!!

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