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divamomma

Daughter Going To Kindergarten. Help1

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Instead of retyping everything I would like to provide a link to a thread I started on another site. I hope that is allowed? I posted on that site to gain some insight into Canadian allergy laws/school plans etc. Please read my post and the replies. I feel like nobody gets being celiac, or waht gluten can do to a celiac. Am I nuts??

http://www.allergicliving.com/forum/viewtopic.php?f=37&t=6800

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I would not go so far as to say No food celebrations. You just need to know when you need to supply a safe treat. (You supply, don't trust someone else to have a gluten free kitchen to prepare a safe treat.) Ask that treats be healthy fruit and vegetables. The other parents will thank you that the kids didn't get all sugared up on junk.

The classroom and hands should be washed as often as possible.

Teach your little one to be proactive for themselves. Read labels together. "Gluten free" should be as easy to recognize as their own name. They need to have the confidence to say "NO" to adults who do not know about food allergies.

Teachers will do their best to supply gluten free products for the class, but they usually have bought the supplies before the schoolyear started.

I gave the school a copy of Danna Korn's RAising our Celiac Kids. Favorite quote from the book "Don't Dwell on it, Deal with it."

My kids didn't want a big deal made out of food allergies. Their classmates would bring in a gluten free candy bar for gluten free kids and cupcakes for the rest. It was really a nice surprise each time, because it was never expected. Keep some safe replacement treats in your child's bag or locker.

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My oldest daughter was supposed to start kindergarten in the fall and we had gone to register her and while we were there we spoke to the school nurse about celiac (one of the most ignorant and unresponsive people I have met, she told me that I should just give my daughter a little gluten everyday and she would get over it) and other food issues which are not as threatening for my oldest. She told us that there was no way to make sure that my daughter would be safe: the school supplies are what they are, the children have tables and not desks, they sometime play with playdough and do noodle crafts, and my absolute favorite was that they do not always have time to wash hands and desks around snack time. It was going to be all on her to not share food (they aren't allowed to in that school anyway, but kids will always find a way to trade) and to keep her food safe. At first we were just going to find a way to teach her to deal with it, but if she brought any residue home with her or even getting sick at this point it would not be good for our youngest daughter. In the end my husband and I weighed our options and decided that she is going to be homeschooled because I personally see no reason for all that responsibility to be on a 5 year old. At home she will learn how to read food labels and about cross contamination and she is also learning how to cook and bake so that she is well prepared to deal with it when she does go to public school or even spend the night at the grandparents without us. Another thing that we noticed was that she was getting picked on a little bit in preschool for having different food and that bothered her, but the situation was a bit different since the school supplied the snack for everyone but her and she has to deal with normal food comments from others also so we will also be teaching her that you don't have to eat gluten, dairy, soy and other things to be normal.

Anyway, my whole point to that was I have recently been in that same position and I do not think you are nuts and as far as food celebrations there are already some schools doing away with it, I know that where my daughter was supposed to go they are not allowed to bring in any food for birthdays. I wish you the best of luck in getting what you need for your daughter.

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My strategy with my two boys was to be the person to bring in the big treat.

They are both very allergic to food colouring so I made sure I was always the cupcake mom. At the "meet the teacher" meeting I would take the teacher aside and tell her that I was volunteering insisting that I be the cupcake/treat lady for the year. Other parents were free to bring in the cheese and crackers, fruit plate, juice or whatever but I was responsible for the big exciting treat.

It has always worked so far. Kids will shrug their shoulders and deal with not having crackers or veggies but nobody wants to be left out of the treat. I always took other kids' allergies and intolerances into consideration as much as I could and had conversations with those parents so that I wouldn't accidentally harm their kids.

It is sad when the school has sports day or reward days and my son doesn't get the treat that is offered but we have a deal. Any day that there is a birthday cupcake or sports day popsicle or other shared treat that he can't have we will stop at Dairy Queen on the way home for ice cream. Leaving a box of safe goodies with the teacher is a good idea too.

The cross contamination issue is harder. There is a boy in my son's kindergarten class who is Celiac and also allergic/intolerant to dairy, soy, almonds, rice, strawberries, pineapple and kiwi. The school and classroom have made no accommodations for him whatsoever but the whole school is nut free regardless of which classrooms the nut allergic kids are in. It's very frustrating.

Volunteering in the classroom as much as possible would be another strategy. It would accomplish a few things. You would make a friend and ally out of the teacher which you need. You would see how the classroom operates which would allow you to develop coping strategies with your daughter and it would allow you to protect her on treat/party days.

There will be mistakes. There will be bad days and it's sadly just part of coping with the real world which is not going to bend over backwards to accommodate us.

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I found this a while ago which I think might be helpful.

http://www.csaceliacs.org/SchoolMaterial/Teacher.php

I know nothing about the laws in Canada. Is there a local chapter of Canadian Celiac Association. http://www.celiac.ca/ you can call?

Your requests seem very reasonable for a kindergartner.

An internet search w/key words celiac and 504 would give you samples of what children in the US can and do get through our laws. I am not sure what the applicable law would be in Canada. This might give you some ideas of accommodations to request.

These are some templates from Children's Hospital Boston.

Celiac Support Group School Packet

This packet will provide you with the information and tools to help make you and your child's school experience happy and safe.

Download School Packet, http://childrenshospital.org/clinicalservices/Site2166/Documents/School%20Packet%20forms%202008-%20March.doc

Celiac Disease Careplan Template

Download the Celiac Disease Careplan Template, http://childrenshospital.org/clinicalservices/Site2166/Documents/Celiac%20Disease%20Careplan%20template.doc

What also helped was showing a video to the school nurse. There are a number on youtube if you search for celiac, from the Mayo clinic or other celiac centers.

We had a lot of trouble with school last year and we worked with the social worker to try to help. The teacher just acted like I was out of my mind for demanding that they wipe up after meals and snacks. The social worker told me that there is a usually steep learning curve with schools.

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Hi DivaMomma,

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 ~

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Thank you!!!! I am totally willing to meet them halfway and do more than is required of me. gluten-free dough is easy to come by and is actually alot neater than traditional playdough. gluten-free glue is easy to find, just have to get the right kind. The paint used in the school is already gluten free so yay! I know some parents like bringing in cupcakes for some reason (eye roll). While I would love to see them not brought at all I do like the once a month suggestion. At least then I can be there to wipe tables, sweep the floor etc. Cupcakes are SO crumby I don't think the teacher will have time to properly clean. Of course the moms who just HAVE to send cupcakes will also be MUCH too busy to help on their child's cupcake day. That is fine, I will be there for my daughter. I have no problem paying for gluten-free items but I really wonder why I should have to. My daughter is entitled to a public education just like anyone else. THis is where the emotions come in and I turn into a monster!!

Thank you for your replies :)

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Thank you!!!! I am totally willing to meet them halfway and do more than is required of me. gluten-free dough is easy to come by and is actually alot neater than traditional playdough. gluten-free glue is easy to find, just have to get the right kind. The paint used in the school is already gluten free so yay!

Yes, definitely check to see what the problem areas are for supplies and then approach with a range of things you're prepared to do to correct it. If they see that you are looking into things for them (rather than demanding they check and fix), they will be more open. You approach it from, "I've checked into the school supplies and was thrilled to see that you already use a brand of glue and paint that is gluten free! Playdough is not gluten free and unfortunately, it easily transfers to other toys. I was hoping we could use a gluten free version of playdough when she starts kindergarten this fall. There is a recipe and I'm happy to make enough for the classroom. OR I've located a company that sells it and I'm happy to pay the difference in cost from what you would have spent on regular playdough."

I know some parents like bringing in cupcakes for some reason (eye roll). While I would love to see them not brought at all I do like the once a month suggestion. At least then I can be there to wipe tables, sweep the floor etc. Cupcakes are SO crumby I don't think the teacher will have time to properly clean. Of course the moms who just HAVE to send cupcakes will also be MUCH too busy to help on their child's cupcake day. That is fine, I will be there for my daughter.

I know. There will also be Moms who like to surprise the class with doughnuts occasionally as well. It's a bit insane and, in my opinion, out of control. It is my understanding that teachers dread class party days as well due to all the sugar. I think approaching the school into a policy wide change wouldn't be that difficult and would have staff support. At the same time, request that the school start implementing healthier food into class parties. (You probably can't avoid the cupcakes, but if you can start the ball rolling for carrot sticks and apple slices at parties as well, it is a start). There's lots of literature regarding children and obesity concerns. And if the classrooms have 'room moms' who help plan the parties, insist that you are involved in the planning to make sure your child can have similar items. Helping in the classroom at parties not only keeps your child safe, but I know it would be appreciated by the teacher.

I have no problem paying for gluten-free items but I really wonder why I should have to. My daughter is entitled to a public education just like anyone else. THis is where the emotions come in and I turn into a monster!!

Sometimes, it's not about what is legally right - it's about keeping the peace. My oldest daughter (with autism) is non-verbal and teaching her to read is very difficult. I located a reading program that would be great for her that costs $300. Considering they have come to a dead end on how to teach her, they technically (and legally) have no reading program for her. Legally, they should provide this program. They balked and said they wanted to look around and see what they had that might work. Rather than start an argument, I offered to pay for the program. I have no doubt they will take the program seriously because they realize that I was serious enough about it to pay for it myself.

You're right, you shouldn't have to pay for it yourself, but it's enough of a gray area that they may balk at paying for the entire classroom. They may surprise you and offer to pay for it, I'm not sure how well funded schools are where you live. Here, the teacher would have to pay for it out of pocket and a $3 glue stick would cause a year-long resentment. I guess what I'm saying is pick your battles. It's far more important to have a school that supports you and is on your side than to battle over the small stuff. You don't want to be the parent that teachers dread having your kid. You don't want the other kids to get mad at your child because they can't have cupcakes at school.

You also don't want your child seen as so fragile that they can't do 'normal' kid activities. I hold my breath everytime my daughter wants to join a new club or team or try a new activity. Without fail, I always get a phone call asking if my daughter has a medical condition (we're a small town). I answer honestly, but assure them that she is very much independent and able to look after herself and we will provide everything she needs. During soccer, that meant that I volunteered to bring team snacks every game. For Children's Theatre, instead of sharing make up, I buy our own set. I shouldn't HAVE to, but I do because I want her to have the opportunity to do many things instead of quietly discriminated against because other's don't understand Celiac Disease. It also has the added bonus of giving me the reputation as a parent who has high maintenance kids but I'm a parent they want involved in activities. (I should also add that I do have a limit and if people are being careless about my kids' health or education, I'm very involved in correcting the situation regardless as to what lengths I have to go to).

Anyway, I've written a book again - sorry! Good luck!

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When my daughter was in school, she did fine. She did not want a big deal made out of "gluten". She wanted to be known for who she is, not "the gluten allergic kid".

The extra snacks were with the teacher, I helped at every party, and handwashing is ALWAYS important. Not just for cross contamination for germ fighting. My daughter did get Rotovirus when she was in 4 year old preschool and ended up in the hospital.

When my daughter was diagnosed with Eosinophilic Esophagitus it was time for her to enroll in Public Charter Cyber School. There are other options than "homeschooling". My homeschooling friend thinks I am crazy for making the kids stay with public curriculum rather than choosing my own. EE is just harder to deal with sleep disturbances more "triggers" to avoid, some of which seems to be airborn seasonal. If it comes down to the school is not keeping your child safe you will have to find another option that is better for your child. The school is never going to ban gluten. Can you imagine people not being able to send a wheat sandwich with the lunch!!?

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The school is never going to ban gluten. Can you imagine people not being able to send a wheat sandwich with the lunch!!?

Yup. I have a hard time packing lunches my kids love and my house is packed with gluten free food. A "normal" family wouldn't be able to do and they shouldn't have to.

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I am not asking them to ban gluten. I know that is ridiculous and impossible. However I do believe that where changes can be made they should. Things that can minimize the risk of CC should be done.

On a good note I finally found out which of the two teachers she will have for Kindergarten. It is the same teacher who my 6 year old had last year in kindy. I feel very positive that we will be able to work together. She is a wonderful lady and a great teacher. We will be meeting on Monday to discuss my daughter's needs and what needs to be done for her. Thanks for all the support, advice and comments!!!

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One year I chose to be the person in charge for the parties. I foolishly assumed that would allow me to choose the treats. Oh. Wrong! The teacher decided that the kids were old enough to choose. And what did they choose? Pizza, cookies, ice cream floats. All the stuff my daughter couldn't have! The teacher herself was a diabetic and there was a girl who was diabetic so I had hoped this would help eliminate the sweets. But no! I did ask that the treats come prepackaged so that the diabetic girl could know the carb count and also take them home if she wasn't able to eat them at the time. Which sometimes they were. There was still nothing for my daughter to eat unless I made it at home and brought it in. That was a very frustrating year for her. She also has additional allergies, nuts being one of them.

Aside from celebrations, I was shocked at how much food was used for other things in the classroom. Candy was frequently used to teach math. I can remember being livid when she was in 6th grade. I explained her allergies to her teacher who had a dairy allergy herself. I thought she understood. Nope. Daughter gets contact reactions and the teacher forced her to hold some Twizzlers to demonstrate some math assignment.

She is in Jr. High now. What a relief. Very little food has been present in the classrooms.

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We have had a learning curve when it comes to school. We have two daughters that are one year apart in school - now entering 2nd and 1st grade. It is a struggle, especially as we faced many gluten related health challenges that were rather unexpected. We appear to have gluten/wheat allergy in addition to our celiac condition (for all of our children and myself). It has been a real process to work through the struggles of entering the school system. We had a "wait and see" approach with our olest DD, as no one knew how it would go. She is unable to get a formal "celiac" diagnosis because she now has ana and super crazy reactions to gluten exposure after she went gluten free due to the severity of her younger sister's gluten intolerance. It required that she be exposed to the "typical" classroom environment that ended up in a year of chronic suffering followed by two hospitalizations for our doctors to be more forthcoming with interventions for keeping them safer at school. It is absolutely critical for you to have a good medical team to coordinate and discuss your child's health requirements. Even with ana reactions to gluten exposure, our DD has struggled to have a safe learning environment, especially in kindergarten.

Even with specific doctors' instruction that our DDs classroom be "gluten free", the school had regular "exceptions". It was incredibly frustrating. It seems next to impossible for our school's population to go for even a few hours without consuming gluten. And the standard gluten laden fare was seemingly a requirement for any celebration. It was absolutely necessary for me to attend all celebrations to provide, serve, guard and protect my DDs food. Even with me in attendance, there were a lot of opportunities for dire consequences. I did provide all gluten free playdough and tools for the entire classroom. The first year, I tried so hard to help in so many ways. I brought in fruit and vegetables for snacks on an almost weekly basis. I established incredibly hard to maintain expectations in an effort to help reduce my daughter's chronic suffering from the continuous gluten exposure in her classroom. Her even more super sensitive sister was blessed in many ways by having her older sister pave the way.

It is important to remember that every school and teacher is different. I have heard fantastic stories of other schools that go above and beyond in ensuring the health, safety and wellness of ALL students, even if that means adopting stringent gluten protocols. Unfortunately, that was not our situation. We did review all available schools in our district and select the one that we felt was best prepared to accommodate our children. You will have to work with the teacher, principal and possibly the district administration to make your child's school experience a success, so try to build successful, working relationships in all that you do. We do keep spare clothes on hand at school, and they have been used by both of our children (urinary and fecal incontinence, as well as vomitting, are some of our struggles with larger gluten exposures). But I will share that we are ecstatic to have a break from kindergarten next year. It was a horrible struggle for both of my children and myself to endure the hazards of kindergarten. And my relationship with the kindergarten teacher is strained, at best. I still have one more child (another super duper sensitive) to get through kindergarten, and I can't help but dread it in so many, many ways.

Here's hoping that you have a wonderful and safe kindergarten year ahead for your daughter. I would push to get the best instruction possible from your doctor(s) in writing to help expedite your conversations with the school. We used documentation from both our pediatrician and specialists to make the most progress with our needed accommodations. You may also want to find out if your state provides you with access to an advocate for your school medical requirements. You may want to consider implementing a 504 plan, or an Individualized Health Care Plan (IHCP), for your DD as well. Our school wanted to avoid the 504 which was agreeable to us, but implementing the IHCP was critical for continuing the conversations with our school. But, even with all of that documentation in place, our school does not seem to be terribly concerned with liability and routinely challenges the medical prescriptions in place for our children.

Good luck!

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