Wow!  You must have had some very bad experiences with being a Celi
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Wow!  You must have had some very bad experiences with being a Celiac.  
Our kids are only young once and if I can make my child feel included in classroom parties, I'm going to for as long as I can.
My son has been diagnosed for almost 2 years and had a great kindergarten and first grade experience.  There are many other options for class birthday party treats.  His teachers have been wonderful.  They sent home a letter in the beginning of the year (that I wrote) explaining a little about Celiac and offering some alternative snacks (other than cupcakes and donuts).  Fresh fruit, veggies and dip, fruit snacks, dixie cups, popsicles, etc...  
All the parents know that I am the mom of the "Celiac Kid" so they ask me questions.  
I am lucky that I like to bake, so for class parties I do all the baking.  I have even made cupcakes for other kids classroom birthday parties, because they wanted cupcakes.  The other kids are not missing out and neither is my child.  Yes he does miss out on still quite a bit, but why should he if I can help him.
We do come from a small school and are very lucky.  I think almost every teacher in the school knows that my child has celiac, some have even asked for my cupcake recipe.
My husband is also a Celiac and people go above and beyond to include him in things, but we still bring our own food to most places we go.  We never "expect" people to have only gluten free food, that would not be realistic.  We just make sure we let them know how much we appreciate them when they make an effort to have something there for us to eat.

 



________________________________
From: duane and Jen Chock <[log in to unmask]>
To: [log in to unmask]
Sent: Friday, January 30, 2009 2:48:57 PM
Subject: [CEL-KIDS] what world do you live in????

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Quote:
Well, the school nurse needs to know because it is her job to educate the teacher and the other school staff about the issues of the children enrolled in the school. The principal has overall responsibility for the school, so he/she definitely needs to know and to able to take appropriate action if there is a problem. They need to know because the child's school experience is not limited to what happens in one classroom with one teacher.

For example, school parties: our experience was the principal set the policies for the parents to follow for classroom parties and FOOD. The principal can make rules that would require the inclusion of healthier, safe choices like fruit or veggies, which could include the celiac child, or just let the parents in bring in cookies and cupcakes which EXCLUDE the child.

There are also some laws about what must be included on the health forms. Omitting a major medical issue could definitely have unfortunate consequences when you try to get exemptions or special supplies for your child.

And do you really only want ONE adult on campus capable of helping your child?

Okay, it is not the school nurses job to educate the teacher and other school staff, it is yours alone. I for one would never trust a school nurse to educate anyone about celiac, I would guess they have never heard of it. I for one know way more than the school nurse about celiac disease. 

Your child will be EXCLUDED I don't feel it is right for the school principal to change the FOOD policies for the whole class based on one child  just because there is a celiac child in the class the kids need to bring in carrots instead of cupcakes. The gluten free diet is way too complex to ask all parents to make snack choices that include the celiac child. This is also not the world we live in and your  child needs to get used to the idea that not everybody in the world is going to cater to your child. If they go to birthday parties does the host provide a gluten free cake and gluten free pizza for them? No, you bring a cupcake or pizza with for your child. I am also celiac as well as my child, if I go to a pampered chef party, baby shower, etc. people don't cater to me, I bring my own food. As your child will have this for a lifetime, they need to get used to the fact that they are different and they will at times be EXCLUDED.  Also, there are
 other children with food allergies, diabetes, etc.  I can't imagine that the whole class changes their snacks to be sugar free, or allergen free, etc. 

As far as health forms go, yes it states that my daughter has celiac as I am sure any parent of a celiac child would make not of on a form.. I didn't say that leave it off of forms, I just didn't see the need to have a huge notification process as to alert all staff. 

No I don't want ONE adult on campus capable of helping your child, If you educate your child about celiac, they will know enough to educate subs, etc. 


Quote:
      Maybe your child doesn't have a severe reaction when they are glutened - but my child does - so the school nurse needs to know.  Also, when the teacher is not there and a substitute is there - how is the teacher supposed to brief them?  Sometimes the plan book left in the classroom doesn't give enough information.  Celiac disease reactions are different in every child providing information helps if there is an issue.
      I don't know what kind of a reaction she would have as she has never been "glutened" She brings her own snacks and lunch to school and eats gluten free at home.  What would the school nurse do differently?? If a child is having stomach pain, diarrhea or vomiting, they would call the parents, what would they do differently if they were educated in celiac  pull out some miracle gluten reversal drug??? As far as the substitute teacher goes, what would be different, my child knows at snack time she goes to her snack box to get a gluten free snack, 
      Quote

      I have to disagree...
      When my daughter was younger there was a sausage sizzle (they sell sausages
      wrapped in bread and ketchup for fundraisers). They have a lot of these in
      New Zealand.
      I purposefully didn't give her money to buy a sausage. She usually takes a
      GF sausage to school on those days, but I didn't know about this particular
      one.
      The Principal felt sorry for her, and gave her a sausage from the sizzle
      with the bread... so poor Emily had a double dosing, and she thought it was
      okay to eat because it was given to her by The Principal... and you always
      do what The Principal says!!!

      So... my feeling is, the more people who know about it, the better! Less
      chance of accidents. Emily was quite sick by the time I picked her up from
      school!
      If your daughter were well educated enough she would have known not to take the sausage (even from the principal) If they are not educated enough to be their own advocate, they are bound to get gluten, from another kid at the lunch table, trading a cookie for a string cheese, taking a cracker from a kid on the bus, etc. Even if the principal had known about her condition, these principals are in charge of hundreds of children, do you think at that moment he would remember.. oh that's right your mom met with me before school started to tell me you had celiac disease. Unless you are part of an extremely small school, I doubt it. 

      Okay, some background on myself so you all don't think I am just some raving lunatic.. I have had celiac disease for 7 years now, our local gastroenterologist knew about my nursing background and asked me to start up a support group for celiac disease. During the course of running the support group, I have attended many conferences on celiac disease with peter green, dr. fassano, Dana Korn,etc.  
      My daughter has been diagnosed with celiac for two years now so she has been through her kindergarten year and not most of the way through her first grade year pretty smoothly. As I mentioned, she has a Rubbermaid container at school with raisins, fruit snacks, gluten free pretzels, crackers, etc. She also has a special zip lock with candy bars, and special treats for days that a child brings in birthday cupcakes, party days etc. We pack her lunch every day so that takes care of her food for the day. Yes, I am sure at times she feels badly or excluded but this is part of having celiac disease, I to this day sometimes feel badly that I cannot eat pizza, or whatever is being served somewhere.. this goes along with having celiac. If we totally cater to our children so they are never in a situation where there is gluten around they will not function in this very glutened society.  Hopefully I have not offended anyone too badly but I think some of
 you are in serious denial about what this world is about, the only ones that can help your child deal with the gluten free way of life are yourself and your child,
      Have a good weekend,
      Jen 

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