Need Some Hugs

[SofiEmiMom]

Hi everyone. I just needed some support from those who may understand. My 3 year old is gluten intolerant as well as dairy intolerant. She is in preschool two days per week. There is a snack time each class time. There is a snack schedule and parents bring in snack for the entire class on a rotating basis. However, I provide my daughters snack every class since most likely she cannot have it. If she can by chance, I let the teacher know by signing a snack approval sheet that is put out on the cart the snack is set on outside of the classroom. A letter was sent home by the teacher at the beginning of the year (who kindly took it upon herself to do so, which was so nice) that asked if the parents could call me on special snack days - the kids birthdays - so I could send in a similiar snack for my daughter. So if the other kids are having a cookie, for example, I could send a cookie with my daughter too. Well, only ONE parent has taken the time to call me so far. It was the night before, but at least she was kind enought to call. So what I've been doing is waiting and calling the Mom's the night before class myself. And part of me feels bad, like I'm bothering them or something by taking at most 30 seconds of their time to ask them one question. I've tried not to let this bother me, since I know I can't expect people to keep my child in mind as we are all busy being parents. But what happend today upset me. My daughter had class today, and I waited until yesterday to call the Mom who's childs birthday was today. I got their answering machine and left a nice detailed message saying how I was just wondering what she had in mind for snack tomorrow so I could send in something similiar for my daughter for the party. She never called me back. So I'm waiting at the snack cart outside of the classroom today before I sign the snack approval sheet and the Mom walks in - she sees me and rather than put the snack on the cart she plows past me avoiding all eye contact, puts it in the room, and then practically runs out the door. I'm just standing there thinking, 'what the heck?'. Keep in mind - I am a small, unassuming, and what I think to be a really kind person. She was obviously embarrased, but why on earth couldn't she have just taken the 30 seconds to call me and then she wouldn't have had to feel funny and then rude to me on top of it? I don't know. I just don't get it. All I'm trying to do is help my daughter feel any sense of normalcy that I can. Do you think I'm asking too much in this situation? Thank you for listening to my babble. I feel like no one can relate unless they have a child with the same condition. Thanks again

[ROYAL BLUE]

After reading your post I was so angry. I have work with the public for numerous years and think ( everyday ) they can't get any worse, but they do. Some people are just so inconsiderate, can they not think of the childs feelings.

Not quite the same thing, but 2 days before Halloween my son recieved a birthday invitation for halloween night. My first thought was no, you can't go, it will ruin our plans. Then I thought, all of the other parents probably were thinking the same thing. The child would not have anyone come to his party, so we rearanged our plans to accomadaite his party. It's not the childs fault his birthday is on Halloween, children their age , 6., want thier party on the same day.

Anyway, my preschooler is not Celiac, but in his class everyone brings thier own snacks except on special occassions. I find that easier and takes the pressure off.

My grade one child is Celiac, just getting used to the new way of eating. We have only had the Christmas party to deal with so far. It went pretty well . I made special cookies for the whole class ( made sure they were good enough that no one could tell the difference) . I also made a few extra special things just for my son . This way, he had something the same as everyone else and somthing better than anyone else. He thought it was great.

[Terri-Anne]

Hi SofiEmi'sMom

My son goes to daycare, and while he is not Celiac, I can totally relate! The lady who does meal/snack prep at my son's daycare is an angel from heaven, I swear!

Let me tell you the system we have worked out. Every week on Friday, she provides me with a menu plan for the entire next week. On it is listed the am snack, the lunch meal, the pm snack. She even went so far as to provide me with the recipes for all the "dishes" she makes. I take home the menu plan and then on a blank menu-form, fill it out again, writing in appropriate substitutes for the regular lady, (or even a fill-in cook if Becky is away.) He can eat some of the things they eat, such as the fresh fruit, so the day care provides them, but if they serve muffins, he eats one from home that I've provided, and on his menu plan the alteration says, "Rice Flour muffin from home, or from freezer." I've implied my permission by means of permitting what ever I've listed on his menu plan, and whatever I've sent for the cupboard or freezer.

I've given her an individual sized casserole dish, and if a meal is something he cannot have, she makes something similar for Logan with his wheat free ingredients, ie rice pasta. She has learned to thicken stews with corn starch instead of flour, after asking me what to use. I send most snacks for Logan, like you do for your daughter. Logan also has an entire cupboard in the daycare kitchen designated to his foods. I keep it stocked with rice chips he loves, M&Ms, rice crackers, his pasta, and other wheat free, non-perishable items, so that these things are on hand and can be substitued when similar items are being eaten by the other children.

I also bake lots of treats for Logan at home, like wheat free pizza crusts, Wheat free brownies, wheat free banana muffins, and wheat free cookies, and wrap them individually and take them in to Becky who puts them directly into the freezer, in Logan's section, (could be a basket or bin) so that they'll keep. When they have a celebration or some cool snack or treat, Becky already has something comparible on hand for Logan, either in his cupboard or in the freezer, and she just serves it to him when the other kids get theirs. We find this system works very well for us. He is almost never left sitting without something very similar to what they are eating.

Would a system like this work out for your and your daycare?

[wclemens]

My heart goes out to you moms who are working so hard to make life enjoyable for your little ones, and putting so much energy into assuring that they will feel good about what is going on.

I retired last year after 25 years of elementary teaching, and I was usually the only one who had to have a special menu when treat time or party time came around, so I know how you feel.

I think it is incredible that the lunch people you described are so willing to take their time to make sure that your children are so well cared for. My sister works at a school cafeteria and when I visit her I am amazed at how busy all the workers are, so it is great that those you are in contact with are so willing to be helpful.

My new little grandson has the same food allergies I do, but I have been his babysitter weekdays for the past 8 months, and am intrigued to hear your stories of how you are dealing with the daycare situations and school. We have that time to look forward to, so I am taking your comments to heart, and hoping to learn how to avoid the pitfalls some of you are experiencing.

About the lady who walked through without saying a word or making eye contact--it sounds as though she feels embarrassed--maybe in time she will find that her child has special needs (and, most likely, you will end up being the one who helps guide her in some way). That is usually the way I have seen things work in the school system and in life.

My thoughts are with you all as you go down this path of learning. I hope to learn from you! Welda

[hapi2bgf]

My daughter goes to daycare 5 days a week. The daycare teacher was the one who found out that my daughter had a peanut allergy (not a celiac), even though peanuts were forbidden in the building due to other kids severe allergies. The lady gave the kids peanut cookies for a special treat after checking all of the charts that no one had a peanut allergy. Boy did she freak out when my daughter starting having anaphaltic shock. It is a mistake that will never happen again at that school.

As a result, my child is one of the kids with the "Special diet needs". When she was being tested for celiacs and initially told it was positive, I discussed the options with the director and she was extremely helpful. The second test came back negative. I am grateful since the celiac with a peanut allergy just adds to the difficulties of a gluten-free diet.

I have taught all of the teachers and substitutes how to read labels for peanut allergies. They hide peanuts in the damndest foods! Much like the gluten-free diet, it is a constant game of check and recheck. All of the teachers know that my daughter has special cupcakes in the freezer for bdays and parties. All of the parents contribute treats on the monthly party days, and I supply cookies and snacks that are peanut free for all of the kids to eat. I bring more than the other parents, but I am ok with that. I do not expect the other parents to understand the peanut allergy as her close friends parents have trouble with it.

The reason I am writing this is that although celiacs (I am the celiac in our house) have special dietary needs to survive, I find them absolutely mind boggling at times and don't expect others to understand this disease. I bring food to friends houses and they call to clear the food plans with me. I am thankful for whatever they do to accomodate my needs, but I do not expect them to get it perfect. I am teaching my daughter that peanuts give her "boo-boos" since I think that is all she can understand right now. And she is learning what gives Mommy boo-boos. It would be nice to "fit-in" again, but she and I are both learning that we will never fit in and we will always have to read and check labels first.

[luvthesun]

Dear Sofiemimom,

I can relate to your feelings on this issue very well. We found out our 5 yr old was celiac in October. (dad pos in 1998) I had suspected it already and was eliminating wheat from her diet. Have had mixed results in her kindergarten class regarding her diet. Then, we tested our 8 yr old over the holiday break and sure enough, she is positive too. When I approached the 'class moms' they asked alot of questions and seemed truly concerned. Just yesterday, I gave them a list of acceptable gluten-free snacks, candies etc. The response was rather cold I thought. I continually have to explain to all the moms and teachers what they can eat and not eat. We also follow an organic diet so I feel soo alone most of the time. I had made gluten-free pizza for the girls today and was dropping off the 8 yr olds in the lunchroom. As I was leaving, I could hear the whispers.

My 5 yr old was invited to a friends house after class today. I told the dad that I'd drop off some lunch for her and he was offended because she could just eat 'their' food! I reminded him of her celiac and he was just quiet. No one seems to get it.

It is very tough to understand this disease if you have never dealt with it personally. It is also very hard for me to express the importance of the diet to those who are less than interested in hearing it! I have decided that I must grow thicker skin and not let people's reactions affect me. So far, I have alot more work to do in that area!LOL

Hope things improve for you!! If it helps any, I believe all those here understand..and then some!

Hugs,

Donna

[SofiEmiMom]

Thank you Donna - and everyone else. I'm learning a lot about myself as well as other people during this whole process of living life gluten free. I've since gotten over my little ordeal with the other mom...it just helped me to get it off my chest in this forum. It does help to know that someone out there understands exactly how I feel. I realize that I'm too sensitive - it can be a blessing and a curse. I'm hurt easily but I'm also very sensitive to my childrens needs and everyone else around me - and I'm proud of that part. I'm realizing that everyone is busy and focused on their own children and frankly, it seems to go in one ear and out the other when I try to explain my own childs diet restrictions. I'm going to keep trying to educate people as best I can and be an advocate for my children. That's all I can do right?

It was funny, the mom I spoke of at the opening of this topic happend to be sitting right next to me yesterday as we were both on the class Valentine Party committee, to my surprise. I was pleasant and she didn't say much to me. And then when the topic of the snack came up for the party I said that I would like to provide the snack for the entire class due to my daughters 'allergies' (i find this at least makes some sort of sense to others). The other mom says, 'oh I can bring the milk' and I said if no one objected I would like to bring the drink as well which will be juice. The other mom then said, 'oh, whose kid can't have milk?' 'Mine' I replied. 'Oh, I'm sorry I brought milk for my daughters snack day' she said. I nicely replied, 'oh, that's ok. I bring my daughter her own snack every day'. All the while I'm thinking...and the cupcakes you brought she couldn't have either! Nor did you bother to call me back when i left you a message the night before class to see what you were bringing so my daughter could have something like her classmates. Sigh.

I realized at that very moment that a lot of people just don't get it, will never try to get it, are very disorganized, are busy, and frankly, just not very bright. Put all of those things together and it's pointless for me to waste my energy on being annoyed with these people. It really was a light bulb moment for me. I just have to focus my energies on my kids and do the best I can to educate people with little expectations. It's a crazy gluten free life:).

[luvthesun]

You sound like you've got the right idea! It seems like it's a daily struggle and some days we are up for it and others-not.

I made a detailed snack list including alot of the regular(maistream) sugary snacks (to accommodate the parents who know no other snacks) and gave it to the kindergarten teacher this morning. Now I have her confused because I told her initially we limit her sugar too. (she was very weak when we figured out the diagnosis and I believe sugar supresses the immune system) The reason I included these types of things was so some of the parents would not think us total freaks! I explained that I would prefer my daughter eat the more healthy snacks but this was for parties. The school also has this practice of rewarding good behavior with what else? Candy. The teacher was giving my daughter stickers and it was great. Now I will need to reinterate the need to continue with the stickers!

Ah, homeschooling becomes more appealing every day!

I figure that our kids will surely know the depth of our love for them..when they are old enough to understand.