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

[homemama]

:grouphug::grouphug::grouphug:

 

BTDT! and still doing that! We have been dealing with peanut allergy (touch and ingestion) since ds was 2. One of the reasons we homeschool!

 

All I can say is, IF YOU'RE NOT DEALING WITH FOOD ALLERGIES, YOU DON'T FULLY UNDERSTAND. I have had my feelings hurt many, many times. I could write a book! Food allergies is truly a disability. It not only affects a person's body, but it affects the SOCIAL LIFE as well. I'm putting this in caps, not shouting at you, but so others who read this thread will truly pay attention. My son was not even accepted at a church mother's day out program because the teacher freaked out about the allergy. This was even after we had it all worked out. I mean is it too much to ask of others not to bring nut products when it could kill a child, physically and socially??? Come on, what's more important, a child's life (meaning social also) or a p.b. sandwich?? LOL! Not trying to step on toes, but people being afraid can keep a child in a bubble literally! I understand that it's hard to know that without dealing with this on an everyday basis.

 

I'll try not to be so negative in my next response. Others are afraid of what they do not understand! Education to others about the allergies is one of the best things you can do. Please try to find other friends at the moment (you need someone to lean on) and keep moving on. There is life after a food allergy dianosis, but life is different and has to be treated that way. I would love to befriend you! Send me a PM!:001_smile:

 

homemama

trying to educate my silly 9 year old, without nuts! They aren't a staple to live!:lol:

Edited February 25, 2011 by homemama
to add more info.

[Slartibartfast]

I am so sorry, I cannot imagine how hurtful that must be. I don't understand how someone could treat a friend like that.

 

:grouphug:

 

We believe in treating others how we would want to be treated. I wouldn't want my children to be treated like lepers. If you lived near me my family would be happy to accomodate your child's allergies.

 

I don't think it is unreasonable to change, brush teeth, wash well or even avoid certain foods before attending a playgroup.

 

I agree that making a playgroup specific to allergies could be really great. I am sure though that you could find people willing to attend who do not have allergies.

Edited February 25, 2011 by Sis

[regentrude]

I mean is it too much to ask of others not to bring nut products when it could kill a child, physically and socially??? Come on, what's more important, a child's life (meaning social also) or a p.b. sandwich??

 

The problem is: it is not just the pb sandwich. When I first encountered the problem of allergies (not in my children) I looked on my pantry to see which products contain nuts in some form - and I was absolutely amazed that things like simple curry paste have nuts in them. Aside form the obvious peanut butter, there are dozens of things a kid might bring that contain hidden nuts.

I would NEVER trust other people to read labels this carefully if the allergy was so severe that my child could die from minute exposure. (I know you as a parent certainly do, because you are aware of all the issues - but would not trust a family who is not dealing with the problem every day)

 

Part of it is also to blame on the litigious society: which teacher in their right mind can take this risk upon themselves - should anything happen, they would be taken to court and sued out of house and home.

So, while I understand your pain and isolation, I also understand the teacher who does not want to take the enormous risk, being at the mercy of other parent's vigilance, and be held responsible.

[homemama]

Regentrude,

 

Labels are full of "may contains". That simply means (usually) that the food is manufactured on the same equipment with other things containing nuts. It's usually something to just cover the companies. We do not eat "may contains" however we're able to be around others that have may contains or eat may contains. To not do this, would be to "truly" not leave your home. I say this with all caring and sweetness. I don't want to come across mean or anything, just informative.:001_smile:

 

For people with food allergies, you have to find your "comfort level" and what one's comfort level might be for some might not be for others. For instance, some people with food allergies even let their children eat "may contain" food items, I do not.

This is why I posted that the food allergic family must make their decisions (based on doctor recommendations) what they can participate in and what they can't participate in. Our doctor specifically said to not isolate my son for any reason. Otherwise, we might end up with him in psychiatry!

 

As far as legal concerns, when a parent is present with their own child, I think the responsiblity lies with the mom in a group play situation.That's why you don't "drop" your child off at locations where people are not willing to take responsibility. It does make for moms of food allergic having to be present more. Also, medic alert bracelets are very helpful for children to wear. Plus, as children grow older, they take some of the responsibility for the unfortunate reaction if it occurs.

 

There is LOADS of helpful info on the web about managing social situations with food allergies foodallergy.org is a great resource for everyone dealing with these situations. Education is one of the best tools and finding friends supportive and willing to learn makes things less scary for everyone. Sorry, this is so long, just that I've been through this for the long haul and it really hits hard.

 

Also, wanted to add--- In a school situation, if a child is turned down because of the allergy, the institution can be charged with segregation with the office of civil rights. Food allergy is considered a disability (a hidden disability.) Public schools have to make accomodations for these kids, just like any other child with handicaps.

 

homemama

Edited February 26, 2011 by homemama
to add info

[NoPlaceLikeHome]

We don't eat "may contains" since I did read of a study that showed that these items are 13% of the time contaminated enough to cause a reaction from what I recall:(.

 

As for peanut allergies I have read that nuts are often cross contaminated with peanuts and as such should not be consumed with peanut allergies. My ds happens to be allergic to both.

[Colleen in NS]

I was absolutely amazed that things like simple curry paste have nuts in them. Aside form the obvious peanut butter, there are dozens of things a kid might bring that contain hidden nuts.

 

Last summer when we visited the States, I was looking for mayonnaise in Wal-Mart. Mayonnaise. The WM brand of mayonnaise at that store had *may contain traces of peanut* on it. I couldn't believe it. I've lived with this scrutinizing for years, but the mayonnaise floored me.

[lincap]

:grouphug::grouphug::grouphug:

 

BTDT! and still doing that! We have been dealing with peanut allergy (touch and ingestion) since ds was 2. One of the reasons we homeschool!

 

All I can say is, IF YOU'RE NOT DEALING WITH FOOD ALLERGIES, YOU DON'T FULLY UNDERSTAND. I have had my feelings hurt many, many times. I could write a book! Food allergies is truly a disability. It not only affects a person's body, but it affects the SOCIAL LIFE as well. I'm putting this in caps, not shouting at you, but so others who read this thread will truly pay attention. My son was not even accepted at a church mother's day out program because the teacher freaked out about the allergy. This was even after we had it all worked out. I mean is it too much to ask of others not to bring nut products when it could kill a child, physically and socially??? Come on, what's more important, a child's life (meaning social also) or a p.b. sandwich?? LOL! Not trying to step on toes, but people being afraid can keep a child in a bubble literally! I understand that it's hard to know that without dealing with this on an everyday basis.

 

I'll try not to be so negative in my next response. Others are afraid of what they do not understand! Education to others about the allergies is one of the best things you can do. Please try to find other friends at the moment (you need someone to lean on) and keep moving on. There is life after a food allergy dianosis, but life is different and has to be treated that way. I would love to befriend you! Send me a PM!:001_smile:

 

homemama

trying to educate my silly 9 year old, without nuts! They aren't a staple to live!:lol:

 

I do agree.. if you don't live it.. you truly don't get it. It is so kind to see people be compassionate and TRY to include food allergic children. There needs to be more inclusion.

 

The Homeschool group is one I started in 2008. All members were well aware and agreed to the safety guidelines. Which IS amazing. But we still encounter the discrimination and hurtful situations with the spin-off group, not being invited to birthday parties, when we were on vacation the entire homeschool group went to an ice-cream social at the library, the library has food in it.. on and on.

 

My life is dedicated to allowing my baby to not feel like an outcast while protecting his life. It is a hard balance.

[Colleen in NS]

My life is dedicated to allowing my baby to not feel like an outcast while protecting his life. It is a hard balance.

 

And don't forget, it *will* get easier as he grows. It will.

[Irishmommy]

Just :grouphug:!

[Teachin'Mine]

:grouphug::grouphug::grouphug:

 

Linda food allergies aren't that uncommon these days. There must be other children who would also benefit from a group get together that's food safe. I know there may not be a huge number who have food allergies and homeschool, but if you don't limit it to homeschoolers, you might get a nice group. I think it might especially work while he's still pre-school aged.

 

Just a thought.

[KatieJ]

Last summer when we visited the States, I was looking for mayonnaise in Wal-Mart. Mayonnaise. The WM brand of mayonnaise at that store had *may contain traces of peanut* on it. I couldn't believe it. I've lived with this scrutinizing for years, but the mayonnaise floored me.

 

My oldest son works in the parts department of a large food manufacturing facility. We just got back from a 700 mile round trip road trip and had lots of time to talk.

He explained to me that many of their machines are used to make many many different products. I was surprised at the variety of products made in one building! They may run peanut butter one day and mayo the next, which is why the warning on the label. Or it could be that mayo in made in the room next to the room that the granola with peanuts is made in and contamination happens when people walk from room to room etc.

(DOn't quote me on teh mayo and peanut butter in the same machine..I don't know that is hwat happens, I am using generalities here.)

[NoPlaceLikeHome]

Last summer when we visited the States, I was looking for mayonnaise in Wal-Mart. Mayonnaise. The WM brand of mayonnaise at that store had *may contain traces of peanut* on it. I couldn't believe it. I've lived with this scrutinizing for years, but the mayonnaise floored me.

 

Oh yes, I have seen shredded cheese and even plain frozen peas with these may contain labels:glare: I still take them very seriously though.

[mirth]

I confide in these 2 women

 

Linda, have you talked to either of these two people already? If you don't mind me asking, how did it go?

[Colleen in NS]

I was surprised at the variety of products made in one building!

 

Wow, this is what surprises me, too! I knew about things like soy sauce being made on the same lines as other Asian sauces with sesame or peanut, so we are careful with soy sauce, but the mayo just really surprised me!

 

Oh yes, I have seen shredded cheese and even plain frozen peas with these may contain labels:glare: I still take them very seriously though.

 

Crazy! More reason to start gardening! I remember seeing yogurt with a peanut warning one time, too.

[cin]

I haven't read all the responses, but I wanted to share the other perspective...I am great friends with a mom whose son has severe Dairy allergies. He has a little backpack that he takes EVERYWHERE with him, with his inhaler, benadryl and epi-pens. She is training him superbly, to take care of himself. But anyway...She has taken care of our girls several times and I have told her, point blank (but our relationship is like this) that I would love to have her daughter over, but I am petrified to have her son in our house. Dairy is a mainstay in our diets.

 

She completely understands. And understands the life God has given her. She hosts most playdates, takes food to all events for her son, and is the 'Snack Mom' for any class parties.

 

In your'friends' situation, I would have to you and explained my fear. my friend would have said something like, I understand, don't worry, I can't shelter him from every bit of allergen in the world... And helped to ease my fears.

 

I can see both sides of the situation. And it's tough.

[ThatCyndiGirl]

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.

 

 

I don't see what they did that was so wrong, actually. I agree with regentrude. I have watched friends and family members bury their children (not due to food allergies, but it is the death of a child, nonetheless) and the thought of a mistake of mine made in ignorance CAUSING YOUR CHILD TO DIE would make me not want to participate in that group. To me it sounds protective, not hurtful. Perhaps they were trying to SPARE YOUR CHILD? TO KEEP HIM ALIVE? :grouphug:

[Omma]

We have lately noticed that WalMart's 'great value' items often say, "May contain traces of peanut"... including vegetable oil, grated cheese, and now I hear that mayo, too. My almost 11 ds hasn't been able to eat mayo for years due to an allergy to soy (as well as all nuts).

 

In our experience, it is not getting easier as time goes by. My ds has such mental stress over trying to be ever vigilant about food that we are seeking counseling/therapy for him. He is dealing with some depression/anger/fear issues that stem in big part to his food allergies.

 

I really sympathize with you, but my dh has tried to help us to see that we cannot really make other people change their habits for us, and my ds has some big anger issues to deal with when he expects that others should change for him and they don't (ie. the world isn't fair, etc.)

 

Brenda

[lincap]

I did talk to one of the moms. And she admited that they eat foods that would be safe for him but her program is a drop-off and didn't think it would be good for us. I expressed that instead of telling others not to tell me I prefered her just to come to me and talk to me. Our talk went well. I know she loves my boys and allergies can just get in the way.

 

It is the lie and sneaky-ness that hurt more than allergies. I am trying to feel as normal as I can and protect my little guy the best I can.

[ThatCyndiGirl]

I did talk to one of the moms. And she admited that they eat foods that would be safe for him but her program is a drop-off and didn't think it would be good for us. I expressed that instead of telling others not to tell me I prefered her just to come to me and talk to me. Our talk went well. I know she loves my boys and allergies can just get in the way.

 

It is the lie and sneaky-ness that hurt more than allergies. I am trying to feel as normal as I can and protect my little guy the best I can.

 

 

I'm glad that you were able to talk about it. I do agree with you that the sneakiness would have bothered me, too. They probably thought that they were sparing your feelings.....and in the end, hurt your feelings. :grouphug:

[mirth]

I did talk to one of the moms. And she admited that they eat foods that would be safe for him but her program is a drop-off and didn't think it would be good for us. I expressed that instead of telling others not to tell me I prefered her just to come to me and talk to me. Our talk went well. I know she loves my boys and allergies can just get in the way.

 

It is the lie and sneaky-ness that hurt more than allergies. I am trying to feel as normal as I can and protect my little guy the best I can.

 

Glad things are more at peace with your groups now. Thank you for the update.

 

It is so much better to just be straight with one's capabilities especially when food allergies are concerned. Parents of kids with food allergies would so much prefer a straight answer (even if it is the disappointing sort) than any games that require decoding.

[StephanieZ]

FWIW, I can imagine the fear that the other moms have when being around your son, and even more so since you have confided repeatedly just how fragile your son is.

 

I have a fairly serious allergy to poultry (of all things!) and it took me *many* accidental exposures over several years to get the hang of ingredient checking. . . and I was 29 when I was diagnosed. I probably ate chicken accidentally at least every 3-4 months the first few years. I haven't accidentally eaten it yet in about 2-3 years, but that is really new. It took a LOT of mistakes to learn how it hides everywhere.

 

Given that experience, if I knew you. . . and had little kids in tow to a play date with your son. . . I would be absolutely terrorized every minute of the entire day. Probably to the point of absolutely not enjoying a single moment. Just imagining it gives me the shakes. I would be terrified that my child would have accidentally eaten something and expose your child. For days before, I'd be paranoid that some kid would get to the kitchen to fix their own breakfast and serve dairy before I knew what was happening. My kids have self served breakfast since age 5 or so, so that would absolutely be a scary thing. I likely would not sleep well the night before. I'd likely end up yelling at the kids when they messed it up. . .

 

Point is, I bet any sum that the parents ditching you is simply about the moms own ability/willingness to handle the stress involved in keeping your son safe. They don't want to harm your son, and can't handle to stress of keeping him safe given the parameters you've set.

 

So very sorry your family is dealing with this. I agree with the other posters that outside friendships are not vital to happiness when you have a loving family. Once a week interactions with other kids is more than enough IMHO. Small playdates would likely be easier than large groups. . .

[Colleen in NS]

Our talk went well.

 

Yay!

[Teachin'Mine]

I did talk to one of the moms. And she admited that they eat foods that would be safe for him but her program is a drop-off and didn't think it would be good for us. I expressed that instead of telling others not to tell me I prefered her just to come to me and talk to me. Our talk went well. I know she loves my boys and allergies can just get in the way.

 

It is the lie and sneaky-ness that hurt more than allergies. I am trying to feel as normal as I can and protect my little guy the best I can.

 

That makes perfect sense that they knew it wouldn't be a good idea to include your son in a drop off program and I'm glad you got a chance to talk with them.

 

Have you thought about starting a separate group for kids with food allergies? As I said, there may not be too many in your area who have the food issues and homeschool, but if you don't limit it to just homeschoolers, you may have quite a few who are interested. It would be good for you, the other mothers, and the kids to have each others support and to not feel so alone. This would be in addition to the homeschool group, not in place of it. :grouphug:

[lincap]

That makes perfect sense that they knew it wouldn't be a good idea to include your son in a drop off program and I'm glad you got a chance to talk with them.

 

Have you thought about starting a separate group for kids with food allergies? As I said' date=' there may not be too many in your area who have the food issues and homeschool, but if you don't limit it to just homeschoolers, you may have quite a few who are interested. It would be good for you, the other mothers, and the kids to have each others support and to not feel so alone. This would be in addition to the homeschool group, not in place of it. :grouphug:[/quote']

 

I have reached out to my community. There are not many food allergic kiddos around me. I started a facebook page for a local food allergy support group and there are maybe 15 members but they don't respond to things. I might try posting in a community yahoo group. I know there has to be more of us out there!

[Teachin'Mine]

You may need to reach out to areas as much as an hour away or so. Most families don't mind having a bit of a drive for something once a month or so. Maybe you can spread the word through doctors who specializes in this too.

[bairnmama]

I have reached out to my community. There are not many food allergic kiddos around me. I started a facebook page for a local food allergy support group and there are maybe 15 members but they don't respond to things. I might try posting in a community yahoo group. I know there has to be more of us out there!

 

 

:grouphug:I am so glad things are getting worked out. I have a friend who's son has a lethal contact food allergy and she started her own homeschool group instead of joining the one I attend for that very reason.

 

But the part I bolded really astounds me! I'm the head of my church's nursery and we have MANY food allergic children. It is truly frightening being the person in charge of all these little lives that don't know what they can and cannot have and dealing with the parents of the "normal" children who really have no clue that the crumbs from the cracker their child was eating in the car, that are still in the creases of the kid's clothing, could make another child seriously ill. My church is not really all that large and, in just the 4 and under set, we have 4 gluten free, 3 cassein free, 5 nut free, 1 can have NO potassium, at least 1 must be corn free,and a few are a combination of the above.... out of a total of maybe 40 children.

 

Whenever a new child is dropped off, I make sure to ask about any allergies or sensitivities. But many times, I have avoided giving a snack at all and only provided water to drink from cups kept at the church building. There are so many hidden ingredients in packaged and prepared "snack" foods and you can't really trust that food or cups from someone's kitchen hasn't been cross-contaminated either.

[Mom0012]

:grouphug:I am so glad things are getting worked out. I have a friend who's son has a lethal contact food allergy and she started her own homeschool group instead of joining the one I attend for that very reason.

 

But the part I bolded really astounds me! I'm the head of my church's nursery and we have MANY food allergic children. It is truly frightening being the person in charge of all these little lives that don't know what they can and cannot have and dealing with the parents of the "normal" children who really have no clue that the crumbs from the cracker their child was eating in the car, that are still in the creases of the kid's clothing, could make another child seriously ill. My church is not really all that large and, in just the 4 and under set, we have 4 gluten free, 3 cassein free, 5 nut free, 1 can have NO potassium, at least 1 must be corn free,and a few are a combination of the above.... out of a total of maybe 40 children.

 

Whenever a new child is dropped off, I make sure to ask about any allergies or sensitivities. But many times, I have avoided giving a snack at all and only provided water to drink from cups kept at the church building. There are so many hidden ingredients in packaged and prepared "snack" foods and you can't really trust that food or cups from someone's kitchen hasn't been cross-contaminated either.

 

I wonder if it's actually not that there aren't a lot of children with food allergies around, but rather that many parents of children with food allergies don't feel it's necessary to have them in a food allergy group by the time they are school-aged. I worried horribly about my son's food allergies when he was a little guy, but at this point, there's no reason why he can't function in a regular group as long as he doesn't eat other people's food. Sure, he'll get hives if someone touches him with nut butter, but no one has ever done that and he wouldn't have a systemic reaction if they did. I can't even remember the last time he had hives. Also, with my son's limited diet, I wouldn't want to be in a group that required us to avoid additional foods to accommodate other people's allergies as well.

 

Part of the problem for the OP may be that her son may be one of the more rare cases where he does have a systemic reaction upon contact. Or, some parents just feel more anxiety about it than others. I have a good friend whose daughter has about the same allergy level and reaction as my son but she worries much more about it than I do. In fact, my son has had a number of very severe reactions when he was little and again last year when he tried allergy shots, while her daughter has never had an anaphylactic reaction. Yet, there are many things that I do with my son that she wouldn't do in a million years. I respect her decision on this, but it does limit what we can do together. People have different comfort levels based on what they think the risk is for their child.

 

Lisa