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SilverSlipperMember Since 26 Mar 2008
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Posted by SilverSlipper on 11 August 2011 - 07:01 AM
Posted by SilverSlipper on 30 July 2011 - 11:38 AM
We've lived in two different districts but both were agreeable to providing gluten free lunches and classroom accomodations. My daughter has a 504 Plan in place as Celiac Disease does affect one's ability to learn if it's not managed. Schools have a legal requirement to do these things but I understand that not every district complies.
I would start by getting a note from the doctor who diagnosed them that they had Celiac Disease and asking her/him for handouts for the school. Then I would approach the teacher and try to work out what you need (since it doesn't sound like you are going to ask for other things, just the birthday situation). A good suggestion is for there to be one class party day each month where all the kids' birthdays (in that month) are celebrated. I know that some districts allow two items brought in - one sweet (usually cake) and one salty (chips/pretzels). Nothing else. In that case, you could send in a gluten free cupcake and chips without it being a big deal. I've found school districts to be agreeable especially if there's not much for them to do. So, I've always suggested that parents approach schools with a 'partnership' frame of mind.
Posted by SilverSlipper on 22 July 2011 - 10:25 AM
Gluten free diets are becoming trendy and some of those people are downright scary. They do not know specifics about the diet and I do feel misled when they announce they have celiac disease (because they assume if they can't tolerate gluten they must have it) and then offer my daughter a rice krispy treat (not gluten free) because regular cereal doesn't bother them so it shouldn't bother my daughter, right? (Yikes!)
But the people who treat this diet casually would never be found on this forum. Seriously. I trust the people here (diagnosis or not) because they do take it seriously. And how sad for my daughter when she meets gluten free friends who are allowed pizza hut pizza every Thursday night for their 'gluten day' before going back on a diet. Then I have to explain how there's really no such thing as a gluten day for her condition. Even the smallest amount of gluten makes her sick for nearly two weeks.
Just to make sure my point came across clearly - self-diagnosis is fine with me and I agree that they actually have a harder time of it (medically) than those with the gold standard of diagnosis. The people who drive me nuts are the ones who do not take the diet seriously and feel that others shouldn't have to as well. And they can be found with and without a medical diagnosis.
Posted by SilverSlipper on 09 July 2011 - 08:32 AM
With our second daughter's celiac disease, not everyone got it. (If anyone read Dear Abby in the past few months, I wrote in saying that holiday meals should accomodate celiac disease). Every holiday, people would not read ingredients or think 'just a bit' wouldn't hurt. Every holiday ended with my daughter not able to eat things and still being sick. So we sent the following email to all family members:
"Good Morning and I hope all of you are having a great Thanksgiving week-end! We enjoyed seeing everyone. It was great to see Davids family in *city removed* as well, however, somewhere along the way *daughter* stumbled into some hidden gluten in her food and shes been ill ever since. Shes able to get out of bed today (though the diarrhea is continuing), but the stomach pains and diarrhea made for a not so happy holiday.
With all the stress over keeping her healthy, weve decided to avoid future family events where food is served at other peoples houses. *daughter* is expected to be grown up regarding her diet and health. Wed like her to have the freedom to be a little girl during the holidays without worrying about becoming sick. Wed love to get together to visit, just no food please. So, wed like to invite people to our house to celebrate Christmas!
The party will be from 12 4 on December 19th (Sunday). Its a drop in when you want type of gathering. We will be inviting all family members to come during this time. If you would like to exchange gifts at this time, that is fine (but keep in mind that other people will be around) or we can plan to do it another day. Please dont bring any food, we will be doing all the cooking and it will all be gluten free. We have decided to sponsor a family for Christmas and they have a child like *daughter* who is also diagnosed with Celiac Disease. We'd appreciate our guests bringing an item to donate to this family, especially items clearly marked 'gluten free'. We feel so blessed, we want to share our happiness with others and try to make their challenges easier.
We hope to see you here - much love to you all!!"
Yes, some were offended and decided not to attend (which was fine, I can wait them out). Some were impressed that we made such a stand and showed up with lots of items for the little boy we sponsored for Christmas. Any conversations about this were kept out of my daughter's hearing. She has no idea that there was ever conflict about her food. I wouldn't hesitate a second to prevent her visiting a relative that didn't keep her health in mind. Accidents will happen and I understand that, but disregard for her health means that a relative will be hearing from me. On a funny note, my in-laws called me and told me that if I'm ever upset with them, to please call them - they don't want to read about it in a syndicated column.
Good luck with everything (both you and Original Poster!)
Posted by SilverSlipper on 14 June 2011 - 12:03 PM
My daughter attends school and will be going into 4th grade. She was diagnosed in First grade.
I think you will find that many parents will react negatively to the things you are asking for (parents of typical kids that is!). As much as you want to protect and cherish your child, they want to do things for their kids (like cupcakes shaped like dinosaurs for their birthday) and you will fall into the parent trap where the issue isn't the problem, it's all about emotions.
I wouldn't ban cupcakes (although I agree, the healthy snack would be better) because it's destined to fail. There will always be one parent who will flat out disobey and show up with cupcakes and dare the school to stop them. Then the other parents are mad and when their kids want to know why they didn't get cupcakes at school, the finger will point at your child. The better solution is to ask if birthdays could be celebrated one day each month (all the Sept birthdays, etc) and make sure your child has a gluten-free cupcake. We were totally blown away one year when one month, all the birthday kids asked their parents to make sure the cupcakes were gluten free.
If you want gluten-free playdough, paint, glue and noodles in the classroom, I think you should offer to pay for it. I take a fairly firm line about asking teachers to provide extra for their classroom as many of them pay for the items out of their own pocket. Same with cooking activities - offer to pay for a gluten free alternative for the entire classroom. If you ask other parents to pay for special items, someone will be resentful of it. (Just as a side note, I've always sent my daughter's classroom items and they were kept separate from the others - she's never had an issue and she's VERY sensitive to gluten with both immediate and delayed reactions).
Yes, the kids should wash their hands and tables should be wiped. Offer to send extra soap or wipes. I don't think you need new toys for the classroom - a good cleaning should suffice (and yes, broken record, offer to clean them).
Definitely keep her glue, scissors, whatever separate. My daughter even has her own box of tissues and sanitizer because I worry that other kids might eat their snack and touch the container without washing their hands. I make sure it's clearly labeled and that she has neat little bags and boxes to put her stuff inside that other kids recognize as being only hers.
I also think it's worth mentioning that we encouraged her teachers to discuss celiac disease with the entire class and that my daughter had it. I know that sometimes they cringed initially about discussing medical conditions, but her classmates noticed (and your daughter's will too) that she didn't eat the same things. I told the teachers to answer questions honestly and respectfully but never in a "poor thing" attitude. Once the kids are on your child's side, the parents are less of a problem - most kids will stay away from things because they don't want their friend to get sick.
As your daughter gets older, she needs to assume more responsibility for her own care as this is a life-long disease. Learning to look for "gluten free" on packages and eventually to read ingredients, brand names that are safe, not being too shy to tell an adult 'no thank you, I can't have items with wheat/gluten', and learning phone numbers for emergency contact or to call Mom and check on ingredients are important.
Speaking of emergencies, there needs to be a plan for what to do should she react to gluten and that requests to go to the potty are granted immediately. Depending on how severe the reaction she has, a few sets of spare clothing kept at school for emergencies would be great. My daughter is allowed to leave class without asking the teacher to go to the bathroom if needed and also allowed to go straight from the bathroom to the nurse's office if needed. There's nothing more humiliating than soiling your clothes and having to find a teacher.
My observation has been that parents who go to a school and demand that the school comply with their requests are typically met with eye-rolling and comments about 'snowflake' and 'princess' children. If you have that same list and offer to help with cleaning, pay for special items, volunteer for parties and in the classroom, they take you more seriously. My background is not only having a child with celiac disease, but also having a child who is severely autistic and being a state-trained advocate for parents of kids with disabilities. You mentioned in the post you linked that kids with disabilities are being included in general ed - that is true, however, if there is too much distraction or too much need, the child is not included and schools have taken parents to court and won.
All the best ~
Posted by SilverSlipper on 25 February 2011 - 06:43 AM
I understand your viewpoint. I agree that medically it's not supposed to happen. But, it does. Could it be something else? Absolutely. But we only see it with products containing gluten that are also wet. I have other kids with medical conditions so tracking this down to definitively say it's gluten is not high on my priority list (nor would I know what else to do to check). We avoid it and she can make her own decision about whether to continue when she's older. It's not been a huge issue - shampoo, conditioner, lotion. Her school doesn't do a lot of art stuff where I would worry about art supplies. On the very rare occasion it happens, she wears gloves or the teacher helps her.
I have heard others here say that they react from just touching gluten, but they seem to indicate that it's an internal reaction. My daughter reacts to ingested gluten (with the typical diarrhea, stomach cramps, etc) but no rash. She doesn't have DH. We thought originally that she had an allergy to wheat and consulted an allergist. But she has no allergies. This seems to be a skin reaction. I have no food allergies and love seafood, but if I touch it raw, I break out in a blistery rash. I realize that is a horrible comparison because raw shellfish is known to cause reactions like that, but it's the best comparison I can think of.
All the best...
Posted by SilverSlipper on 01 December 2010 - 01:31 PM
Posted by SilverSlipper on 26 November 2010 - 09:54 PM
My suggestion would be to find one or two meal 'plans' that you really like and can do easily. Write those on an index card and put those recipes (if needed) in a binder. For me, it was broiled pork chops or chicken breast, steamed broccoli and rice. (Yes, you can see what a maestro of creativity I am!). I made sure those ingredients were always on hand. Making the switch to gluten free cooking was very frustrating and (honestly) very stressful for me. I was a bit resentful of having to change the way I cook to accomodate my daughter's medical needs. (I realize how horrible that sounds.)
As I expanded and figured things out, I increased my index cards with brand names of gluten free items (such as taco shells and mixes) that she could eat. Once I had a full week of items, with supplies on hand, I felt free to experiment a little.
What we typically do now is take our recipes and convert them to gluten free. I do use gluten free cookbooks, but I equally use regular cookbooks and just make adjustments. I only buy ingredients for one new 'experiment' at a time because if I buy too much, I've blown my budget and I don't know what to cook for dinner.
I'm glad you finally have a diagnosis and hope you will feel much better soon!
Posted by SilverSlipper on 15 March 2010 - 11:21 AM
We have a 504 for our daughter (2nd grade, 8 yrs old). This allows the cafeteria to provide her a gluten-free meal every day. I have to say the lunchroom manager is phenomenal. She shops for my daughter's food at a local grocery store and if my daughter dislikes something, she makes a note and knows not to buy that item again. I do feel guilty sometimes because her lunches are so much better than everyone else's. Depending on sales, she will occasionally get things like kiwi for her fruit or a side of avocado with her taco salad. The classroom keeps a 'safe food' box for her (that I provided) so that if a parent shows up with cupcakes, she gets a treat as well. She has unlimited bathroom visits and is allowed to leave the classroom without checking with the teacher in an emergency (she hasn't had to do that and knows that she absolutely cannot take advantage of these privileges). This summer, she ate a piece of candy that had gluten in it and became sick. She missed four days of school but we knew it would take several days after the first symptoms appeared. The school sent her classwork home the next day and she didn't miss a step with her academics. That was a huge benefit for us. Our pediatrician faxed over a note so that the absences were doctor excused.
I think a 504 is a great step so that teachers know exactly what they are dealing with on the first day of school. If she becomes ill, I want a teacher to know that she had a medical condition so they call me immediately if she complains of a stomach ache. I want the substitute teachers to know that she may have to use the bathroom at odd times of the day and it's okay. I want people looking after her. In return, I support the school as much as I possibly can. I remember them at holidays and I send tissue and hand sanitizer in year-round. It's a great relationship.