Blatant Disregard for Special Diet

I think you may have expected too much. It's not that they don't respect it or care (well, they might not) but what you've laid out here is daunting and confusing. Do you provide them with actual things he can eat? Send along groceries, like two boxes of cereal, almond butter, whatever it is that you rely on? Do you give them a list of no-nos, that also spells out the typical places you see that thing (i.e. red dye #5 is in fake juice drinks)? Do you give them a list of These Are Really Great Items/Recipes/Foods To Choose Instead That He Won't Have a Problem With? I wouldn't know how to avoid casein if you didn't lay it out for me, and I wouldn't know what to swap out for if I'm cooking something that calls for vinegar, for example. It's a complicated thing that you know inside and out, but someone who doesn't deal with it regularly would not know how to handle all the intricacies.

I would still send him next time (if he had a good time otherwise), but this time, pack foods that he can have. You have probably done a lot of research into which foods he can and cannot have, and for someone who doesn't have a child with those types of restrictions in his diet, that would be a tough act to follow! (I'm sitting here wondering what casein is, and how in the world I would go about avoiding that? And I thought I was pretty well-versed when it came to nutrition!) I mean, melons, mushrooms, okay, easy enough to avoid. But all artificial flavors and colors, sugar... those are in a LOT of foods. Maybe next time you could send him with a cooler of foods, and if they run out, then at least they know what brands and types of foods he could have. That might help.

I think you were expecting too much. If they got this half right (at half the meals), I think they did great. And I wouldn't keep him home when his siblings were allowed to go and have fun.

He doesn't swell or stop breathing, as you said, and the effects of a fun family time are now over. I'd let it go.

Well, I'd say they got it HALF RIGHT!

For me, with three kids with no dietary restrictions whatsoever, I would find it challenging too. With out VERY specific meal by meal instructions, hell, better yet, without premade meals. Especially with no practice, ever.

And actually having worked for years with autistic children on restrictive diets, I DO understand the importance. But with three kids that aren't mine, while traveling, at special events......

I think it's YOUR call what to do next time. Or maybe there won't BE a next time, she's probably terrified to screw your kid up for life.

My $.02.

:)

I would be furious. I'm sorry, but this is not OK. It's not OK that they disregarded your instructions for your son's feedings, and it's certainly not OK that they told him that he can eat foods he's not allowed to have when he's with them and that you, his mother, can't do anything about it. They basically told your son that what you say doesn't mean jack.

I would be having a serious talk with them. The trust you had in them to properly take care of your child is gone. I wouldn't be allowing ANY of them to vacation with them again. So this time it only affected your one child, but who knows what will happen next time? And again, the blatant telling your child that your instructions don't matter is a big deal.

I fully understand and can appreciate Grandparents and aunties spoiling the little ones when their parents aren't around. I'm an aunt too! However, when it affects your child's health, it's a whole different story.

Many people don't particularly understand so many restrictions, and don't think that a piece of cake or some sugar will be much of an effect. If they tried overall, to stick to the diet than I would not be upset. You can't expect others to be as well informed or particular when it comes to your kids, even though it can be a little annoying. I like the suggestion of sending along preapproved snacks and sweets and the like.... especially when a birthday party is involved, they likely didn't want him to feel excluded with no other options of cake for him.

Yeah I think you asked too much. I have never tried the diet because my ex is too lazy and well it doesn't do a lot of good if it is done 50% of the time, right?

If I let my son go with someone for that long a time on that restrictive a diet I would have tons of food packed for them. There is just no way they could follow that diet and had a fun time. So by having the food packed if they couldn't navigate a menu, pull out the bag of goodies from mom.

If you could have known there was the party, pack a cupcake that was safe.

You have probably been doing the diet so long you know the ins and outs. Trust me, from the outside, I would imagine brain surgery is easier. My niece can't have Glutens. Troy and I walk around the grocery stores like we can't read English just trying to find a few treats to bring her when we visit. Gluten! I can't even imagine if I had the rest of your list to deal with.

Ahhhhh....yes. I think you were expecting a bit too much and they did the best they could.
Is your child never to have a piece of birthday cake? :)
I know just from kids in the neighborhood, I have to remember this O. can't eat apples, this O.'s allergic to nuts, no "red" drinks for this O.......I do the best I can. Sounds like they did just that.
I think if you expect him to 100% follow his special diet--he needs to stay with you at the meal-helm. :)

Well, I'm sure this diet is really hard for them. It includes special preparation and they may have felt like they couldn't say no to him eating what the others do.

I'm not disagreeing with you at all, but looking at a possibility of why they didn't do it. They also may be using the rationalization that he's not "allergic" to these foods and were willing to put up with "behaviors" in order not to work so hard in the kitchen.

They probably have no idea that it is taking more than a week to get him back to right!

Next time, send food with him. More work for you, but less work for them and a clear message that you really mean what you say when you ask them to give him a special diet.

HTH!
Dawn

I think the biggest issue, is the blatant telling to your son that they are planning to break the rules and don't care, and not only that, but that "you can't stop" them. THAT would be the last time they EVER told my child something like that. EVER.

The list probably was more overwhelming when the realities of sticking with it set in. Like Jo W was saying, understanding that gluten is a no-no is easier than actually finding things to eat that do not contain it. Then add the multipliers in there... casein, sugar, artificial flavors/colors, shortening, ETC... Basically, they decided somewhere along the line, F@*% the list of approved and restricted stuff... we are doing this the "manageable" way... and I can sort of see how that could happen. I don't necessarily think it is ok, but I can at least see how it could happen. BUT, to tell your child that their mom can't stop them from ___.... ????!! THAT is WAY out of line. And I would be absolutely LIVID.
I'd probably confront them and say "Watch me." And then not allow them to have unsupervised access to my child any more for a long long long long long time. If ever.

Next time I would either keep him at home or send a supply of food for him in a cooler, fully prepared meals ready to be warmed up.
Don't get me wrong, I am sensitive to your situation, but that's a lot of work for someone who doesn't have all the knowledge that you have and hasn't researched the foods as well as you. Honestly, my family eats very well but I think even I would have a hard time feeding your son, especially if we were eating out at all. Those ingredients can be in all kinds of foods you'd never think of.
Hopefully he had a good time and it was worth the week of difficult behavior upon return!

My daughter is on a similar diet (Feingold) and when she went for a weekend to her aunt's house, not only did my SIL keep to the diet, but she did a ton of research beforehand and asked about things that she thought might be ok. When she cooks for the family now, she makes sure to only use approved foods.
If I were in your shoes, knowing what ONE of those unapproved foods can do to their behavior, I would be livid!

Ideally, I don't think you expected too much. You were entrusting another adult with your child's health. However, the reality is that you probably did expect more from her than she could comfortably do, and that maybe your sister wanted to 'have a nice time' with the kids, thus taking the most easy path by saying 'yes' to things she shouldn't have.

My stepmother has serious allergies to wheat and corn which I accommodate and have been very aware of. When she comes to our place, I always make sure we have enough options for her to get a full meal and usually tweak the main dish to make sure she feels included. (I understand how important this is, as I have my own slew of dietary restrictions.) That said, when we've made it plain that my son *cannot* have high fructose corn syrup, she still is pretty unaware. Perhaps she doesn't want to think he's "missing out" on sweets-- I have no idea-- but it does happen that she'll serve him something he really shouldn't have.

All that to say, no, you are not alone. It's very frustrating at times. My family has been pretty 'quasi-accommodating' of my needs, and now I just pack up a lot of food before I go anywhere. That way, my needs are met and they aren't inconvenienced. (And I'm not getting that 'perhaps it's all in your head' look, ha ha.) You may have to do this with your son; pack a cooler of what he can have and talk to him about only eating what comes out of the cooler. I don't know what his age is, but at some point he will have to learn that he must self-regulate or there can be consequences. It's hard because it sounds like it is affecting his behavior more than giving him a stomach-ache, but this is something he'll have to deal with his entire life. If he's old enough to understand how it affects his relationships with others, perhaps that's a start. (?)

Good luck-- it can be tough!

Did your sister know the diet restrictions prior to offering to take them for a week? If so, your sister had an obligation to see to your son's well being (physical as well as mental/emotional), regardless of how difficult the diet was for her to follow.

Wow, I just read your So What Happened and I have to say SHAME on your parents! Their blatant disrespect of you, as well as your son's dietary needs is deplorable. After they "fun food" him up, you are left to deal with the aftermath. Your poor son! Dealing with the emotional fallout of eating trigger foods must be difficult for him. Epic fail, Oma and Granpa, epic fail.

This sounds like a classic case of Grandparent Syndrome, in which grandparents, assuming they did their duty being tough with their own kids years ago, now feel utterly free to be fun, fun, fun and give grandkids a break from nervous mom's overbearing routines. Isn't that fun, kids?

They and aunt simply do not understand, despite being with you, despite what they read in front of you, that your son is deeply affected by what he eats. I would wager that they did not see the ill effects of the food they gave him but once he got home, his behavior deteriorated THEN and YOU had to deal with their choices.

I would tell them calmly and respectfully, and when there are no other distractions like the kids around so they can focus on what you say:

"I know you meant well and were trying to be fun grandparents/aunt. I really do understand how these restrictions seem excessive to YOU; please understand that they are a pain for ME as well. I understand how you do not see his issues when he eats like this because he does not swell up or stop breathing or vomit. But AFTER you have him, these things in his system affect his behavior and the rest of the family pays a price not just for days but for weeks afterward. What's even more troubling is that you announced to him that with you, he could break our household rules about his diet. That sends him a message that his diet is optional, and something he can cheat on. Where does the message go from there? It teaches him that what his parents say is not something he really has to obey. Can you see how that puts us in a tough position, if we are telling him he needs to do certain things but he hears from you that he doesn't?"

Then take them to see the pediatrican or the nutritionist you use for your son. Seriously, they will not believe you until they hear this not from you but from a medical professional. I would set up an appointment next time they are in town and be clear in advance with the dr. or nutritionist that this is for the purpose of explaining to them the consequences of feeding him off diet. If this is going to be a lifelong issue with him, they need to hear this. Be very calm and matter-of-fact about it; see if you can even make it seem like a special privilege for the dr. to see them about this -- not like you're scolding them. "The doctor/nutritionist wanted me to bring you along on the next visit, which happens to be when you're here, so that you can hear first-hand about the diet," but NOT "You messed up last time so I am taking you to the doctor since you don't believe me."

And frankly the best preventative is to go with the kids when they visit these relatives. That is the only way to ensure your son will eat properly. But it's no break for you. I'm sorry they don't get it. Like I said -- Grandparent Syndrome.

To be honest I didn't even know what casein was until this post and I had to look it up. I think your sister didn't blatantly disregard your dietary restrictions but probably may not know what to feed your kid! Choosing to risk the side effects of the food rather than starving him.

Your list was overwhelming to me, and I'm sure your sister (who perhaps doesn't have kids? Let alone one with special needs...) probably felt the same.

I second the others who said next time send a list of what your child CAN have rather than a list of general ingredients that he can't. Or better yet, send prepared meals along with him that can be heated up and served.

I'd have to do a huge research project should you have left your child with me. I'd have to spend hours looking up what sorts of foods not only don't have gluten in them but also the myriad of other things he can't have. All in one food.

As an experiment I started to try and plan a meal for your son. I thought he could have a salad with no dressing. (Salt and pepper or something to give it some zing.) He could eat a potato and I'm sure I could fix the potato in various ways so the potato wouldn't get boring. He could have any type of meat, right?

I don't know. It's just a lot of stress. I would rather have a meal plan prepared for me so I wouldn't have to worry about screwing it up. Of course I'm the type of person who would have ASKED you to construct a meal plan before taking on the responsibility of your kid. Then I would have fed all your kids this diet so that the one wouldn't feel singled out.

no, you did not expect too much....but as I have learned, some adults thrive on breaking rules & allowing freedom at other's expense.

I hate it. I resent it. & I do everything I have to do to protect my kids...even if it means the other adults in our family do not have solo time with them. A point-in-case would be: my sis was married to a rampant alcoholic for 15 years. During this timeframe, my kids never stayed with her without me. Her loss, & to some extent.....my kids, too. & I would do it all again...the same way. Our only pleasure was when her kids stayed with us....it gave them a break from their alcoholic dad & gave us great delight in sharing memories with them.

My older son battled a degenerative hip disease from age 6 on. My Mom was great about his restrictions....& no one else was. I felt blessed that we had her to rely upon. My younger son is allergic to peanut....& again, we know that her house is peanut-free & we are thankful.

As with most relationships/families, there are pluses & minuses in all. :)

I would be irked.
And I would be irked, with the comment that he can have "fun food" when he is with them and there will be no ill consequences.
Whether they meant to or not, they are confusing your son, and making foods "fun" and not fun. And it may create an eating problem, in any child... once they hear that or are told that all the time.
As your son said "Mommy, Oma and Grandpa say I can have any food I want when I'm with them, and you can't stop me. Is that okay?"
Your son, has already doubted, now... about what foods he can or should not eat. Your relatives, derailed that. Already.

There are health issues, with your son, and per a Dietician.
They disregarded that, as soon as you were not around.
Sure, they honored it when you are all together in that cabin.
But as soon as you were not there... they did whatever they wanted to feed your son/kids.
So that should be a remembered, situation, for you, about how your family will not heed to you or your son's food intake and needs.

What if he had Diabetes? Would they still be feeding him all those treats and "fun food?" I would wonder....
I would not fully trust, their discretion.

Also, I would not expect them to know... how to handle your oldest son, who has Autism.
No layperson without experience, would know intimately enough, about how to handle it.
BUT you had CLEARLY, detailed things about the foods and sent them a list. It does not take a rocket scientist... to follow a list.
Or, they could have called you, anytime they had a question about it.
Everyone has cell phones, right?
AND the thing is, they DID KNOW FULL WELL... that they were disregarding the food list and your son's dietary requirements. Which is not just "your" ideas... but per the Dietician too and per his conditions.

No you didn't expect too much! Your family knows your son has medical needs before they took him. If they didn't think they could follow his dietary needs then they should have said so and not taken him! I would be just as upset as you are!

My #3 son has a severe case of ADHD. With even a small amount of sugar he is literally bouncing off of the walls! Its hard to be around him and he hates the way it makes him feel if he gets too much... but he is also a kid and will always ask for snacks or treats. Sometimes we let him.. in SMALL amounts. My ex in-laws will let him eat candy, ice cream, cake, cup cakes... what ever he wants for breakfast!! Then they send him home and we have to deal with it. I get SO mad!! I know they think he is just a hyper kid and a kid being a kid.. but no, there is so much more to it than that. Why do that to not only us.. but to him also. Plus when they have him they refuse to give him is pills. They don't think he needs them, even if he asks for them because he is feeling "off".

Well, lesson learned. Nobody in my family has food allergies, so I honestly don't know what has gluten or casin, etc. I know you reviewed it with them, but I'm sure it takes a while to completely change what you eat. Now, if they did say they wanted him to have "fun food', that was just complete disregard for your son's health and your requests. That's a different issue....

I have the be careful --- food allergy --- family. I can't have MSG, my daughter has Celiacs, no gluten, my granddaughter is Autistic, no dairy, low gluten, no MSG, my other granddaughter breaks out from watermelon but it's one of her favorites, my grandson no eggs or peanuts, my DIL no shellfish. So I can relate. My ex and wife are almost afraid to try to make a meal for the Autistic granddaughter, I said to my daughter toss in a pot roast w/ potatoes and carrots, use corn starch for thickening the gravy -- done.
You are not expecting too much. Your child has a condition that requires a special diet.

I remember reading a news article many years ago:
A child was at a birthday party and woman at the party offered him a peanut butter cookie, he said no, she insisted he said no, this went on a few more times, the child was guilted into eating the cookie ---- and DIED at the party from a severe allergic reaction to the peanuts. Lesson: never force a child you don't know well to eat something.

But my Mom was like that. I tried to overcome my ex's family and their garbage gut mentality by only buying healthy foods. I read every label of every food I bought. I have been on a low sodium diet for 30+ years because I feel better when I eat low sodium. I refused to buy cereals that were high sodium or high sugar. My parents lived less than a half mile from me, my Mom told my kids 'it's only a bowl of cereal, come to my house for breakfast, I will buy you what you want.' ---- Totally undermined me.
It is never okay to undermine a parent. When you do that you are telling the kids that Mom is stupid and that you know better. Before long the kids question everything the parents say because they have been led to believe that grandma and grandpa or aunt and uncle know better. So every decision the parents make comes into question.
Tell your family taht if they can not or refuse to follow your rules ---- they can't see your kids unless you are with them.

They don't see the results of the bad diet (bad for him) and so to them, it probably doesn't seem real, even if you got it notarized statement by a doctor stating the harm from going off the list.

I suspect, too, the aunt & grandparents wanted to spoil them. In particular, I would address privately the statement your son made ("Mommy, Oma and Grandpa say I can have any food I want when I'm with them, and you can't stop me.") That is blatant disregard for you and your rules, which are not just about a "parenting style" but are rules to help protect the health & wellbeing of your child. Explain that you don't want to prevent the from spoiling your son, but instead have them promise to stick to the list and instead find other ways to spoil him (amusement parks, zoo trips, camping, movies, games for a DS, new bike, whatever). Explain that you welcome them to come up with creative ways to spoil him----that don't affect his diet and thus his health.... And then, if it happens again, explain to them that since they blatantly disregard the food rules, future visits will have to limited or supervised.

My son has a peanut allergy, and part of his education (he's too little now) is going to be to teach him to fend/defend himself, but if my family did this, I would not let them take him overnight or for meals. In his case, though, it's a life-threatening allergy (though some people just don't believe it). Even as it is, I feel I have to "police" his food intake when we're not at home, for safety's sake. As he gets older, it will be a learning process to teach him responsibility for himself/his own safety, but that will be a long, gradual process.

I don't know -- I kind of think that kind of diet is very difficult to follow, especially when you're thinking of a whole group of people, and it's a lot to ask them to follow. My adult sister follows a gluten free diet and it's very difficult when we get together for family functions to make sure she is accommodated. It may have been a good idea to send special foods with him or keep him home, but if they were fully informed and happily willing to accommodate, it's on them to follow through.

Our small family of three needs to watch our diet. We have casein allergy and gluten and soy intolerance. The casein/no cow dairy we try very, very hard to abide by; since we don't have Celiac disease, we allow the gluten to slide once in a while, and the soy we try to stay away from (which is almost virtually impossible, since it's used as a binder in almost everything).

Yes, I'll admit, we cheat. Very seldom, but it happens. Since we don't have immediate outbreaks or need to go to the emergency room, those around us don't know when the food we've eaten affects us (since it's usually a day or two or four later). Eating dairy will give my husband diarrhea and me constipation. Eating gluten and soy affects my skin as well as my immune system (I had severe malabsorption and Leaky Gut, which I'm still working on repairing; it's been 4 years). My daughter has Sensory Processing Disorder; keeping her away from these foods helps her function better. She's high functioning, though, and except for some social issues, one would be hardpressed to know she has "issues."

Getting the extended family to understand our needs and abide by them, though, has been like pulling hair out.

My MIL (and actually, my husband's side) has been the best about this. She really tries. My daughter spends a week with her in the summer (we live 5 hrs away from her). We send GF bread, goat butter, and alternative milk as well as GF treats along with her when she goes to visit; she does eat a little more gluten than she normally does when she's with Grammy, but overall, Grammy tries her best. She's in her 60s, and having to watch food and what's in them isn't something she's needed to do in her life. But she currently suffers from Pancreatitis and needs to watch her own diet, so she's aware of the food/bad health connection.

My folks, on the other hand, don't look at or read the ingredients on anything, they just eat it. My dad says he's going to die soon anyway and there's no reason for him to start eating better now (see what I have to put up with on my side!). Whenever we go home to my folks, we bring along some of our own food. However, since we don't live there (6 hours away), we end up eating whatever they're eating. That means, they make it, we eat it, and there are no concessions made. At Christmas time, everyone brings food to eat/pot luck; again, none of my siblings do anything to change or augment what they make and bring to take into account our food issues. And we've mentioned/noted what those are numerous times.

We have learned to suck it up, eat the food, suffer for a few days, and just let it go. Since we only get home to either side maybe 2x/year, it's not worth fighting over because they just. don't. get. it. And they don't want to learn about nutrition or what's really in their food. We've tried to educate them, but it literally goes in one ear and out the other with nothing registering in between.

Since our food issues don't affect us long term (well, other than with immune issues), we let it go because it's harder to fight it. I console myself with the fact that our parents won't be around forever and soon, we won't be going back home at all. We take loads of supplements and make sure we have supplements to counteract what we eat when we visit either family, say a prayer to our Spirit Guides to protect us and our body elemental to negate anything bad in what we eat, and let it go.

In your case, though, with a son who has autism who is clearly helped by following a very strict nutritional diet plan, I feel it is completely and totally disrespectful of family members to not follow your son's special diet plan completely. I don't know how badly what he eats affects him, but a week seems like that is about right for detoxing.

It all depends on whether you want your son to spend independent time alone with grandparents/family members and how much you're willing to put up with his behavior from eating "forbidden foods." And if your family members are willing or capable of change--which doesn't seem likely. My daughter knows when she's eaten enough "bad food" that she'll specifically request no this or that; I'm not sure if your son is capable of regulating his own food/eating, but hopefully, that could be something he could work on and voice, to advocate for himself.