Letter to classroom parents re: Celiac

[Amooliakin]

I'm going to write to the parents of my daughter's classmates and will add various materials about Celiac and food lists. But how do you all think this sounds as a kind of cover letter?

I'd love your input...

Dear Parents of both 7/8s classes:

Hello, we are writing to let all of you know that our daughter Rebecca was diagnosed last week with something called Celiac Disease, which is an autoimmune response to gluten (a common protein found in wheat, barley, rye, and oats).

We are writing to tell you about this for several reasons. First off, you may have heard some version of it already from your kids who may be concerned. They should be reassured that it is not catching and that Rebecca won’t die from it. Some of the kids were aware that Rebecca was in the hospital to be tested when she brought in her hospital bracelet and some lovely pink photos of the inside of her stomach and intestines. They should not be alarmed by this. Rebecca is feeling good and will be fine! They can also be told that eating certain foods makes Rebecca sick, but that there are many great foods she can still eat. She can have fruits and vegetables and dairy and meat. Also there are many alternative grains that are used in non-wheat flours. So if Rebecca is eating banana bread for lunch, it will be just as delicious, but made from wheat-free flour.

On the other hand, kids (and adults) should be aware that Rebecca cannot eat pasta, bread, pizza, cookies, cake, most cereals, and a lot of other foods that have hidden trace amounts of gluten.

As her parents, we are or course taking full responsibility for Rebecca’s compliance with the dietary restrictions that she will have to follow for the rest of her life. But we are enlisting your help and understanding when it comes to things such as school birthday parties, pot lucks, and play dates. We are being cautious and learning what we can as we go along and don’t expect anyone else to have to manage this or take responsibility for it, but you can make it easier by, for instance, letting one of us know when you are planning a class birthday party so that we can bring in an alternative treat for Rebecca to have when the other kids are eating cupcakes.

Rebecca knows what she may not eat, and we have told her that if she is in any doubt she should forgo the food until we can find out if it contains gluten. Many foods have gluten hidden in the ingredient lists such as “malt flavoring” or even “natural flavoring”.

Many of our kids will continue to be in school together for years to come, and since this will be a lifelong condition for Rebecca, we want to be sure that her peers and ours are aware of the situation. We are glad to talk to anyone about any questions they have and even gladder to hear any information you have to share! This is till very new to us and though we feel confident that we will keep Rebecca safe and healthy, there is still a LOT more we need to learn.

Thank you all –

AG and NL
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Amy - Mom to two kids, one with Celiac, and assorted pets including 9 mice

[The Edifying Conscience]

What's your goal for the letter?
tec

[Amooliakin]

My goal is that the other parents will know the facts from me and not from word of mouth - especially their kids. Our school is a small and close knit community and unless I want to tell every single parent all about it, a letter getting the facts out seems best.

I realize that for some parents it won't make any difference. Maybe our kids don't get along or have little to do with one another. But here are 42 kids, many of whom will go through the next 5 years of school together. I want to plant the seeds now so that it is not as big a deal in the future.

Of course when the actual pot lucks and birthdays and play dates arrive I will give more specific directions to the parents.

Do you think I sound too preachy? Or too presumptious?
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Amy - Mom to two kids, one with Celiac, and assorted pets including 9 mice

[aklap]

Amy,

Since you are in a small school, I can see how things might get turned around in how this "disease" is seen.

Personally, I think it's a good idea to get this out so that all the parents know...or at least have been told.


ohhh....more to come...gotta check my pizza in the oven....
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[cruelshoes]

The letter sounds good, but I would make the following edits:

You mention that her banana bread will be made of wheat-free flour. You might want to say gluten free flourinstead. Some goods are sold in the store as wheat free, but that does not necessarily make them safe for us to eat.

You say she cannot eat pasta, cake, etc. She can definitely eat these foods, they just have to be gluten free.

You say that celiac is not catching, but you might also include that it is genetic.

I like that you are putting a positive spin on things, but I think the consequences to her of a gluten exposure need to be stated. You don't have to get down and dirty (please don't give my kid the runs), but I think it would be beneficial to mention that there are serious short and long term health consequences to her if she consumes gluten. You don't have to make it sound like an anaphylactic peanut reaction, but it is serious just the same.

I would also include contact information in case they have questions.

I did not do a letter like this in my son's class, but if you think it would help, go for it.
_________________
-Colleen
Dx 8/05 via bloodwork/biopsy
9-YO son Dx 11/05 via bloodwork/biopsy
Daughters have negative bloodwork - so far!

A woman is like a tea bag-you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

[Amooliakin]

I'm going to make some edits per your suggestions. I really think the (for me at least) it is important in our school to make a statment at the outset.

It is a small private school in NYC and I am very involved in the Parent's Association. In turn the PA is very involved with the dean and issues like diversity within the school, curriculum, etc.

Because of my involvement I know a LOT of people and since I am somewhat chatty (have you figured that out yet?) a lot of people know me. So potentially there are dozens of times I will have the same conversation with people explaining the same thing over and over. I don't mind this in theory, but it gets a bit tiring.

I also want to be pro-active in the school so that everyone in the adminstration knows what is going on. Maybe I want to have the parents in my corner in case the school takes this lightly. As I mentioned in another post the school nurse and the school counselor have been extremely understanding and supportive. But I don't think the teacher is really with the program. Let's hope it is just a matter of time.

Last week when all this was coming about, both the school nurse and I assured Rebecca that at any time she felt ill she could go to the nurses office to rest. This is easy becuase it happens to be the room right next to my daughter's second grade classroom.

But when Rebecca did feel ill one day during math class, the teacher would NOT let her go to the nurse. When I confronted her about it she said that she told Rebecca to wait 10 minutes and see if she felt better. Then she said Rebecca cried and would not cooperate.

I didn't get a chance to talk long with her, but I disagree with her decision on several counts. First of all, we had already promised that she could go to the nurse when she felt ill. Second of all, if a child feels sick in math class and you don't let them leave because you want them not to miss the material.. guess what - they are not able to hear the material anyway if they are suffering. And third of all, this is the first week of the diagnosis for goodness sake, and it seems to me that Rebecca should be given some latitude in dealing with physical AND emotional symptoms.

vent...vent...vent....

At any rate, I guess the letter to the parents is to educate them and also to get them lined up as supportive of what we will be doing in the future. I guess I am also trying to head off the inevitable people who won't believe the diagnosis, or won't understand that a little gluten is not a small matter, etc.

Maybe I am saying too much... maybe I just need to keep to myself a bit more... Maybe I need some sleep!

Thanks for listening....
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Amy - Mom to two kids, one with Celiac, and assorted pets including 9 mice

[ostrich]