Frustrated With The School

[Emilysmomma]

A week and a half ago I called the school and ask if I could set up an appointment OR talk to the school nurse and my daughters teacher. I got the school principal and she asked me what my concerns were, she seemed a little put out by my call. I said that my daughter was recently diagnosed with Celiacs and I wanted to talk to them about some of my concerns, such as is there playdoh used in the classroom, do they do crafts with cereal and pastas. She said, and quite abruptly, 'I don't think they even use playdoh in the Kindergarten classrooms. Then she said for me to call back when I got my daughters' teacher assignment.

So I called when I got her teacher assignment and the principal answered again, I RSVP'd for the Kindergarten orientation, and then asked about setting up a meeting with the school nurse and her teacher. She said that they would not be available until the start of school. She acted as though we never had the first conversation, and like I was being a nervous Nellie!

Am I over-reacting, am I right to worry about the playdoh with the cross contamination. She has had a few symptoms after playing with playdoh this summer that I am pretty sure were cross contamination - so I have thrown all the playdoh out, and put all the cookies cutters, rolliing pins, and playdoh scissors through the dishwasher. Sending your child to kindergarten is hard enough without Celiacs. I am going to have a short time at Orientation to address my concerns (not scheduled), what should I concentrate on?

[MySuicidalTurtle]

You can maybe get an Individualized Education Plan (IEP) or 504 Plan. I would be concerned about your kid in school especially if she is so little. The teacher needs to pay attention more closely to her to make sure she doesn't eat what she can't and such. You can offer to make gluten-free Play-Doh or suggest they use gluten-free noodles in crafts. I know my life would have been different had I been diagnosed as early as your daughter, so, do all you can to keep her healthy!

You might want to bring some information on Celiac Disease, too.

[MySuicidalTurtle]

This website is good: Open Original Shared Link

"One celiac support group member, Marie Nogueria-Stamas says, 'I felt it was appropriate to place my child on a 504 Plan not to have her labeled as disabled but to ensure that she would be able to participate in as many activities as possible, with the correct accommodations.'"

[dandelionmom]

I bet the teacher is going to want to talk to you. In my limited experience, the teachers really wanted to hear from me what they could do to help keep my daughter safe and healthy. I printed off info for them and went through it all with them. I also gave them my phone number and email and told them to please contact me at any time for any reason. I'd go directly to the teacher. It helps to approach it from a "what can I do to help" kind of way.

Another good idea is to volunteer to be the room mom for the class. That way, you'll be involved in party planning and the teacher knows that you're willing to help out as much as possible (so she'll be even more willing to do what she can for you).

Sorry the principal wasn't more helpful. Maybe it would help to just go right in to the office? I brought my daughter into the office at the school (they're usually there at least a week before school officially starts) to introduce her around and to find out what I could do to help them keep her gluten-free.

[Emilysmomma]

Thank you both! I have information printed out for both Emily's teacher, and the school nurse. Since her doctor has ordered that she uses the bathroom for 10 minutes after lunch each day, she will need to go to the school nurse to do this - they gave me a note, I figured I would get more cooperation that way.

I have offered to supply playdoh for the classroom, I found a 5 1/2 lb bucket in 8 different colors for $23, I thought that was a pretty good price. Every time I email the teacher I stress that I want to make this as easy on her and Emily as I possible can. I am planning on being a room mom, and volunteering in the classroom as often as possible.

We have an orientation on Wednesday, the day before school starts, so I am planning on talking to her teacher then, even if I have to wait until the very end. And I will also talk to the school nurse as well. I am also hoping to touch base with the art teacher as well, because she is another one that will need to keep her enviroment safe for Emily. Lunch, I am having her just eat with the rest of the kids since the allergy table is for the Peanut Allergy kids, and she can still eat peanut butter. I have been working with her throughout the last few weeks eating right out of her lunchbox, and not placing anything on the table. We also talk about not eating anyone elses food. I will put her snacks in a big ziplock baggy in little snack baggies, so she can reach in and get her own snack out of the bag. Am I covering all the bases? Anything else I haven't thought of?

[dandelionmom]

That all sounds really good! It also helps to send in a treat bag full of safe treats (we use bags of M&Ms) for when there are unexpected gluteny treats, like birthday treats.

[Amyleigh0007]

I am sorry you had such a frustrating experience with your daughter's school. I teach first grade and it makes me sad that the principal was so short with you. I can understand your desire to make sure your daughter is safe in school. I am very lucky to teach in the same school that my Celiac son attends so I am always checking on him during the day. Speaking as a teacher, it probably will be overwhelming for your daughter's teacher at first but have faith in her and the rest of the staff. The beginning of school is crazy. I would let the staff know about your daughter's needs and then touch base with everyone a few days later to see if there are any questions. I made a letter to school staff about my son that explains Celiac (a simple explanation) and my son's symptoms along with the items he can't have including food and art supplies. I also included that he is to not ever eat anything that isn't from home or he could get very sick. I gave it to all the teachers he would be in contact with; his classroom teacher, art teacher, music teacher, gym teacher, nurse, librarian, and the principal. A letter or printed material is good because they can go back to it as a reference. They are bound to forget important details if you just tell them (especially at the start of school when there is soooo much to learn about each new student).

You also might want to supply your daugter's teacher with gluten free cereal and pasta. Teachers in the lower grades do many projects with those items and also use them as manipulatives during math. Good luck to you and your daughter! I hope she has a wonderful year in kindergarten!

[ryebaby0]

Two more things to add to all these great suggestions:

I gave my son's teacher a list of mainstream food he can eat, (like Lay's plain chips, skittles, etc.) and we stocked a rubbermaid shoebox for her to keep in her closet for those "whoops" moments. It made _her_ feel better to have it.

Also, for lunch I would pack a placemat along with the food. My son then had a guaranteed "safe" spot to put his food on every day. (Although he usually just eats right out of the lunchbox anyway, at 15)

good luck! this is do-able!

joanna

[mcs1984]

I didn't know about the IEP or 504 Plan for food allergies. I mean I have an IEP but not because of food because of a Leaning disability, but what is a 504 Plan? I am starting to go though the same thing but at my sons preschool where I work. I thinks with that its just hard for these ladies to change over from my son being "fine" to 6 months ago me going in and having him tested and them just not understand that he looks fine on the outside but is sick on the inside. I want to be ready for Kindergarten next year, we are only 10 weeks in and we are still learning and teaching him is hard, when he wants to do it and he's just not understanding 100% that he cant.

[TawnyaK]

You can ask for a Section 504 plan; however, I don't think an IEP is needed unless learning problems can be linked to the celiac disease. You could ask for a Section 504 plan since your child has a diagnosed disability and you are asking for accommodations so that your child can have access to the curriculum. It would be reasonable to request that snacks and treats be gluten free or that gluten free treats/snacks could be brought in by you in the even that there is a special occasion. Cafeteria meals would need to be gluten free and you could educate the class on celiac disease and gluten free. There are a few children's books that I've seen the reviews for where others mentioned that they had the teacher read the story to the class and then discussed it. School districts sometimes have nutritionists and school nurses that could come into the classroom to answer questions. Celiac disease is a disability and the school is required to address your concerns. If you have problems, you can contact the office of civil rights or the state dept of education for assistance.

A week and a half ago I called the school and ask if I could set up an appointment OR talk to the school nurse and my daughters teacher. I got the school principal and she asked me what my concerns were, she seemed a little put out by my call. I said that my daughter was recently diagnosed with Celiacs and I wanted to talk to them about some of my concerns, such as is there playdoh used in the classroom, do they do crafts with cereal and pastas. She said, and quite abruptly, 'I don't think they even use playdoh in the Kindergarten classrooms. Then she said for me to call back when I got my daughters' teacher assignment.

So I called when I got her teacher assignment and the principal answered again, I RSVP'd for the Kindergarten orientation, and then asked about setting up a meeting with the school nurse and her teacher. She said that they would not be available until the start of school. She acted as though we never had the first conversation, and like I was being a nervous Nellie!

Am I over-reacting, am I right to worry about the playdoh with the cross contamination. She has had a few symptoms after playing with playdoh this summer that I am pretty sure were cross contamination - so I have thrown all the playdoh out, and put all the cookies cutters, rolliing pins, and playdoh scissors through the dishwasher. Sending your child to kindergarten is hard enough without Celiacs. I am going to have a short time at Orientation to address my concerns (not scheduled), what should I concentrate on?

[TawnyaK]

I didn't think about the Section 504 plan until I saw another parent on another celiac disease forum mentioned that he was an expert at working with the school and that his child had a Section 504 plan. The Section 504 is a part of the Americans with Disabilities Act (ADA). It is a civil rights federal law that requires schools to provide accommodations to the curriculum in order to give the child access to the same education as other children. The disability has to affect a life function and be diagnosed by a medical doctor. I would think that celiac disease would qualify. Basically, if a child has a broken leg, they might be provided with extra time to get to class if they are in high school. If a child has diabetes, they might be provided with a daily consultation with the school nurse before choosing foods for lunch in the school cafeteria. I'm sure we could all come up with ideas for a child with celiac disease. Generally, a Section 504 is different from an IEP. An IEP provides direct services, often in academics, for children with disabilities that affect learning (e.g., Mental Retardation, Visual Impairment, Learning Disability, Autism). If celiac disease can be linked to learning problems somehow and a medical doctor provides the diagnosis of celiac disease, then you could try for an IEP under Other Health Impairment (OHI).

I didn't know about the IEP or 504 Plan for food allergies. I mean I have an IEP but not because of food because of a Leaning disability, but what is a 504 Plan? I am starting to go though the same thing but at my sons preschool where I work. I thinks with that its just hard for these ladies to change over from my son being "fine" to 6 months ago me going in and having him tested and them just not understand that he looks fine on the outside but is sick on the inside. I want to be ready for Kindergarten next year, we are only 10 weeks in and we are still learning and teaching him is hard, when he wants to do it and he's just not understanding 100% that he cant.

[TawnyaK]

What a wonderful post! I wish that my daughter was old enough to be your student. You come across as a very caring individual. What a treat it would be for a student to have a teacher with such insight and understanding about gluten free diets and celiac disease.

I am sorry you had such a frustrating experience with your daughter's school. I teach first grade and it makes me sad that the principal was so short with you. I can understand your desire to make sure your daughter is safe in school. I am very lucky to teach in the same school that my Celiac son attends so I am always checking on him during the day. Speaking as a teacher, it probably will be overwhelming for your daughter's teacher at first but have faith in her and the rest of the staff. The beginning of school is crazy. I would let the staff know about your daughter's needs and then touch base with everyone a few days later to see if there are any questions. I made a letter to school staff about my son that explains Celiac (a simple explanation) and my son's symptoms along with the items he can't have including food and art supplies. I also included that he is to not ever eat anything that isn't from home or he could get very sick. I gave it to all the teachers he would be in contact with; his classroom teacher, art teacher, music teacher, gym teacher, nurse, librarian, and the principal. A letter or printed material is good because they can go back to it as a reference. They are bound to forget important details if you just tell them (especially at the start of school when there is soooo much to learn about each new student).

You also might want to supply your daugter's teacher with gluten free cereal and pasta. Teachers in the lower grades do many projects with those items and also use them as manipulatives during math. Good luck to you and your daughter! I hope she has a wonderful year in kindergarten!