New here and question about school

DandelionMom

Hi. I'm usually over on parenting. I have a 4 year old daughter with Celiac Disease and am having a really hard time getting the school to understand her disability. I was just wondering if anyone else is dealing with school concerns yet.

breezy0629

I wish I was here to offer you advice, but im not. Sorry!

DS is 2 & we're anxiously awaitng reslults to tell us whether he has Celiac as well.....  I'll be keeping a close eye on this post.

BTW.... what led you to the diagnosis for DD??  Just curious... everyone's symptoms seem to be a bit different.

WELCOME!!!

MrsKohan

Hi!  My son is 3 and just started preschool within the past month.  I honestly don't know if my son has celiacs or not but we do have him on a gluten free and casein free diet (he has autism).

The easiest thing I've found is just to talk to them.  I send in my son's snacks and so far there hasn't been a problem.  They actually seem really understanding about it. 

I know some kids that their moms ask for the teacher to notify them if a kids birthday or holiday party will be coming up so they can send in something appropriate for their child.  It's seemed to work for them.

Also, I don't know if you've done this already, but explain to your child that she is special and just can't have the same foods that everyone else does.  I've done this with my son and I'm not sure he understands, but he might.  So I figured it was worth a try to explain it.

DandelionMom

Breezy: We started noticing problems when our DD was 15 months old (anemia, diarrhea, vomiting, and EXTREME fussiness) but out pediatrician told us that some kids are just that way. Then at 2 she started getting these weird rashes plus all the old symptoms and she was very thin. The pedi just said she had eczema and was "high maintenance." Then when she was 3.5 and still not potty trained and rapidly losing weight, we went in and demanded testing. They ran tests for all sorts of scary things and threw the celiac disease tests in at the last minute. I'd never even heard of celiac disease before. Although it is a pretty serious diagnosis, we're just thrilled it isn't cancer or something worse. We've been dealing with this for over a year now and feel almost like pros so let me know if you have any questions! We've been trying to work with her school. And feel like we've tried everything. There was more stuff this week and now DD is sick again. Her teachers just don't seem to understand. I don't want to pull her out of class because she loves it. I'm so frustrated.

MrsKohan

Ok, so if they aren't listening you need to make them listen!  I would call you doctor and tell him or her to write something up that explains your child is ALLERGIC to gluten.

Then I would call the school she attends and ask to speak not to the teacher, but someone "above" the teacher.  I would explain the situation to them and ask them to speak to the teacher.

If all else fails, change schools or teachers.  Your daugher should not be feed something when it clearly doesn't work for her.  If a child was deathly allergic to peanuts, would they feed the child peanuts?  It's the same thing!

Kristin78

My son was on a gluten free diet when he was in school and the preschool was awesome.
They were really good about listening what food Gregory could have and what food he could not have.  I have (somewhere on my computer) a paper that you can give to school.  It explains celiac diseas and it explains why GF diet is so important. I will look for it today for you.  I can email you it, if you give me your email.

Kristin78

I found the link I was looking for, but it took me forever to find it.  I am just going to post the link - I am afraid I won't be able to find it again.  If the link does not work, let me know

https://www.dallasrock.org/pdf/SchoolGFList.pdf

The second page is the letter to to the teacher.  Hope it helps.

DandelionMom

Thanks Kristin. They already have that one too. I think the problem is the teacher just won't take it seriously. I think I'm going to try for a 504 plan and see if that gets us anywhere. Meanwhile I told DD not to take any food from her teacher, only food from her box (this is what the teacher promised anyway). I hate to tell her to disobey her teacher but she can't keep getting sick.

daisy365

I'm a kindergarten teacher who has all sorts of students with certain restrictions.  What helps me is when I know a lot about the special need of my student.  I usually will research it myself, but maybe you could pull up  a little description for her teachers and give them specifics.
I had a student one year that was on a gluten free/ all organic diet for autism.  His mom would bake special cupcakes for him and feeze them.  WHen I had a birthday in the class coming up I would tell her and she would send in one of his special cupcakes.  She would do this for parties, and pizza parties too.  It helped him from feeling left out and for me feeling bad for him that he was left out.  Sorry her teachers are being a pain!  HTH!

MrsSweetpeaMagee

Dandelion: is DD teacher an older teacher? As a young teacher.. which is what I am assuming daisy is (as well as a good teacher ) I have noticed that older teachers (like past child bearing age) can't/won't change the way they do things and don't understand because they didn't have as many restrictions and lots of the "disabilities" weren't as well known.  I would take to the director of special services in the school district or a principal at the school.