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albauer94

Daycare And 504 Plan

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My 3 year old son was diagnosed with celiac (blood and biopsy) at the beginning of this month. I provided his daycare's center director with a letter from his doctor stating his diagnosis and the need to adhere to a strict gluten free diet. After two weeks of putting me off, nobody has mentioned a 504 plan for my son. The daycare center is a private non profit facility but they do receive federal funding for meals.

I'm unfamiliar with how 504 plans work and am unsure if it would apply at his daycare. His teachers are being great about being super diligent to make sure there isn't anything in the classroom that could potentially make him sick but the center director is rather non-committal about any plans to accommodate him (classroom supplies, meals, snacks, etc). She has, yet again, put me off another week to meet with me.

Does anyone know how a 504 plan works? And do you think it's time to go ever her head?

Thanks in advance for helping :)


Allison

Undiagnosed with DQ8 gene and have had symptoms for 20+ years. Gluten free since March 2015

Son - DX celiac via blood 3/2015 and biopsy 5/2015 (age 3) - gluten free May 2015

 

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Most people I know do not trust a school cafeteria to provide safe meals/snacks for kids.  

 

I would not go over anyones head unless/until you are forced to.  If you have a good working relationship with the teacher, keep that up.  Decide if them providing meals is something you really want to push for.  Keep in mind if your child will continue in that district and you start now going over heads- there is the potential to be seen as a "problem parent" (good or bad- it's the reality of things).  

 

Also, I am not surprised that they haven't mentioned a 504.  They aren't super common esp. for food related issues.

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I have tried to google 504 plan in Pennsylvania and haven't seen much about daycare centers.  I do know they receive money for meals but I don't know if that is enough. I was confused whether it has to be a public school or not.

 

I think more than anything, I want to make sure the arts and craft supplies are safe and I would like to do things like bring in a toaster (and tub of butter) so he can eat toast or waffles when the other kids are eating them.  I hate for him to have to eat cold cereal every morning for breakfast.  I also want to educate them on the cross contamination risks so they truly understand what celiac is.  Although I think his teachers understand, I don't think the center director understand this is more than just an upset tummy when he ingests something with gluten.  

 

And I think I'm already the "problem parent" because of some other things that I pushed for (I had to push for an IFSP for his anxiety problems - he needs a little more help with major changes than others). 


Allison

Undiagnosed with DQ8 gene and have had symptoms for 20+ years. Gluten free since March 2015

Son - DX celiac via blood 3/2015 and biopsy 5/2015 (age 3) - gluten free May 2015

 

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I have two kids with 504 plans (current 3rd grader that got hers at the start of 2nd grade - and current *public school district* Kids Morning Out that starts *public school district* Preschool next year).  I'll only talk about the younger kid right now.

 

We met to put together her plan the Spring before she started KMO (she was 2.25 years at that time).  I had meetings with the upcoming teacher and aide, head of program, school nurse and Health Services Director for the district.  The Director of the building never attended anything - she had no need to.  Other than the Health Services Director (who puts together all 504s in the district), I had all the people I needed in the room.  We started off by them asking me what happens if she has gluten - I didn't sugar coat anything and might have embellished a little bit as I felt I was speaking for future kids with Celiac in the school too.  Then they literally asked me what I wanted and we discussed them point by point. 

* No food not from me or approved by me

* My kid is assisted with her food first and has a set spot at the head of the table (easier to not have other kids touch her food)

* All supplies were checked and safe from the school district person that does that (not sure of his title - but the man is a beast and gets to the bottom of all ingredients directly from manufacturers)

* Unrestricted bathroom acess

etc

 

All this to say that I'd have a sit-down with the people that really matter in this scenario - teachers/aids/nurse/etc.

 

Like Stephanie, I wouldn't trust a cafeteria to feed either of my kids with Celiac.  For example, you have a gluten-free toaster - labeled and color coded and sharpied to high heaven that it's only for your kid - and a sub comes in, throws a regular waffle in, and that toaster is now not safe.  Or tub of butter gets a quick swipe from an unclean knife.  I send in all food.  Period.  Breakfasts from me would be - individual yogurt with granola, oatmeal in a thermos, cereal, etc.  Remember, meals are chaos and they're trying to feed lots of kids at once.

 

I'm not sure if you can get a formal 504 for a non-public school daycare, but you can always type up your requests and go from there.

 

Good luck.  It gets easier dealing with this stuff as they get older.


Angela

Undiagnosed, but I'm positive that I'm the genetic link to celiac for my kids.  Gluten Free in solidarity of my girls!

Kid 1 (9 y/o girl) - DX celiac via blood in 9/2013 (age 7.5).  Negative biopsy in 10/2013.

Kid 2 (5 y/o boy) - DX as "latent celiac" via blood in 9/2013 (age 3.5).  Negative biopsy in 10/2013.

Kid 3 (3 y/o girl) - DX celiac via blood in 8/2013 (age 1.5) and 9/2013. 

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What kind of things do you send for lunch?  Breakfast is a bit easier since breakfast foods don't tend to have meat/starch/veggie/fruit type of menu.  This morning I sent him in frozen pancakes that I made last night with a cup of syrup.  He also likes yogurt, fruit and cereal so even without a toaster, I guess  breakfasts don't look too bad.

 

But lunch is whole other problem.  I want him to eat something similar to what the other children are eating since at this age different isn't always a good thing in a child's eyes.  So today they were having chicken noodle soup so I sent him with chicken broth, cooked carrots and animal shaped noodles.  I have to say it, but last week he ate lots of hot dogs, salami and cheese.  I don't want him to eat tons processed foods on a regular basis but right now he doesn't trust anything that looks like food that made him sick in the past.  We have been doing lots of fresh fruits and veggies to try to counteract the bad stuff  :)

 

I just with there was a way to ensure he would be safe without making myself out to be some type of nitpicking crazy person.


Allison

Undiagnosed with DQ8 gene and have had symptoms for 20+ years. Gluten free since March 2015

Son - DX celiac via blood 3/2015 and biopsy 5/2015 (age 3) - gluten free May 2015

 

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It's ok to be nit-picky. :)

 

I have made a school lunch for my elementary kid every. single. day for the past four years.  I'm really over school lunches.  But they're easy enough to get a good spread of food.  My older kid helps me pack.

 

I send a snack for the younger kid.  In KMO the other kids are given a center-provided snack and hers is sent from me.  She's the same age as your son.  So, she's always been "different" and it hasn't bothered her yet.  I truly think it's easy to overthink it as parents in that regard.  In fact, my girl loves carrots and asks me for them almost every day - while her peers are eating goldfish, graham crackers, junky food.  Since she's getting something she loves and picked out she's happy.  Twice now a little friend tried to snag her carrots instead of eating her own food (which is why I keep extra shelf-stable foods at school for her).  Ask your son what he would like and he might just love getting his favorites instead of worrying about it not being the same.


Angela

Undiagnosed, but I'm positive that I'm the genetic link to celiac for my kids.  Gluten Free in solidarity of my girls!

Kid 1 (9 y/o girl) - DX celiac via blood in 9/2013 (age 7.5).  Negative biopsy in 10/2013.

Kid 2 (5 y/o boy) - DX as "latent celiac" via blood in 9/2013 (age 3.5).  Negative biopsy in 10/2013.

Kid 3 (3 y/o girl) - DX celiac via blood in 8/2013 (age 1.5) and 9/2013. 

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Oh, one more thing.  When my oldest was in Kinder I wanted the perfect amount of protein, fruit, veggies, etc.  Now I just pack stuff without caring as much.  If elementary kids don't love what's in the lunch box it all comes home with them.  I'd rather she get some calories more than being hungry.  This might be the end of the school year talking, though...


Angela

Undiagnosed, but I'm positive that I'm the genetic link to celiac for my kids.  Gluten Free in solidarity of my girls!

Kid 1 (9 y/o girl) - DX celiac via blood in 9/2013 (age 7.5).  Negative biopsy in 10/2013.

Kid 2 (5 y/o boy) - DX as "latent celiac" via blood in 9/2013 (age 3.5).  Negative biopsy in 10/2013.

Kid 3 (3 y/o girl) - DX celiac via blood in 8/2013 (age 1.5) and 9/2013. 

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I guess you're right about worrying more about calories than whether they are getting all four food groups in every meal.  Right now I'm concentrating on getting food in him.  Since he turned 2 last March, he has grown less than 1 inch, lost a half pound and his bone age is 1 year behind.  I will just be happy if he starts growing again.  


Allison

Undiagnosed with DQ8 gene and have had symptoms for 20+ years. Gluten free since March 2015

Son - DX celiac via blood 3/2015 and biopsy 5/2015 (age 3) - gluten free May 2015

 

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Yep, get some food in the kid.  What about letting him pick some mom-approved junky food to eat along with his lunch?

 

I have a friend that would send in a treat at every lunch.  If any other food came back and the treat was gone she would stop sending in treats.  Sounds fair, right?  Until I had two kids that were struggling to not lose more weight.  That first year I was so focused on calories and fats.  My little stick children needed to get bigger.

 

Don't forget, you get him for dinner.  You can make that the most nutritious meal of the day.  It's ok.  I promise.  One day he will grow and you'll be amazed.  My 9 year old gained NINE pounds between her 8 yo and 9 yo well visit.  NINE!!  That would be a lot for an "average" kid, but when you're starting with these small kids with celiac...  I did a happy dance in the doctor's room. :)


Angela

Undiagnosed, but I'm positive that I'm the genetic link to celiac for my kids.  Gluten Free in solidarity of my girls!

Kid 1 (9 y/o girl) - DX celiac via blood in 9/2013 (age 7.5).  Negative biopsy in 10/2013.

Kid 2 (5 y/o boy) - DX as "latent celiac" via blood in 9/2013 (age 3.5).  Negative biopsy in 10/2013.

Kid 3 (3 y/o girl) - DX celiac via blood in 8/2013 (age 1.5) and 9/2013. 

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I think it's admirable to want to send something similar but that's not something that'll be realistic for the long haul.  It just isn't.  And ANY school you send your kid to will have "buyers and packers" so there's a difference there.  It's not a huge deal really.  And kids don't seem to get board (as easily) with things like adults do.  One thing I remember reading is that if you look at a persons grocery bills over months that 80-90% of what is on are consistent.  Even with variety, we like what we like and make what we know how to make and seem to stick with that.

 

I am all for being "THAT" parent when I NEED to be.  There is a time and a place and that differs for each person in each situation.  We have not chosen to fight with the school about providing my kid with a school lunch.  Is he "entitled" to one? Yes.  Do I think they could manage a dairy, egg, peanut, tree nut, banana and gluten free lunch?  Nope. Not a chance I believe they could manage!  

 

I wouldn't worry too much about the director.  They are typically "lets not rock the boat kind of people.  Most don't WANT to know more.  I would focus on those who were directly responsible for your kiddo.  Perhaps a one page bullet point "Main things to avoid" for the director, but if they give you the impression that they aren't interested, they won't read much more.  I would also caution leaving any food there for daily use unless it's individually wrapped/labeled.  The though of a butter tub in the community fridge would cause me heart palpitations all day long!  lol

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I would also caution leaving any food there for daily use unless it's individually wrapped/labeled.  The though of a butter tub in the community fridge would cause me heart palpitations all day long!  lol

This.  100%.


Angela

Undiagnosed, but I'm positive that I'm the genetic link to celiac for my kids.  Gluten Free in solidarity of my girls!

Kid 1 (9 y/o girl) - DX celiac via blood in 9/2013 (age 7.5).  Negative biopsy in 10/2013.

Kid 2 (5 y/o boy) - DX as "latent celiac" via blood in 9/2013 (age 3.5).  Negative biopsy in 10/2013.

Kid 3 (3 y/o girl) - DX celiac via blood in 8/2013 (age 1.5) and 9/2013. 

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I'm still waiting for the director to call me back with a date to meet with her and the nurse about Caden.  I'm debating on pushing off the meeting until after we meet with the dietitian and GI doctor at Children's Hospital on the 11th.  Until then we can keep doing what we are doing and be grateful his teachers are diligent about keeping him safe.  


Allison

Undiagnosed with DQ8 gene and have had symptoms for 20+ years. Gluten free since March 2015

Son - DX celiac via blood 3/2015 and biopsy 5/2015 (age 3) - gluten free May 2015

 

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Oh, one more thing.  When my oldest was in Kinder I wanted the perfect amount of protein, fruit, veggies, etc.  Now I just pack stuff without caring as much.  If elementary kids don't love what's in the lunch box it all comes home with them.  I'd rather she get some calories more than being hungry.  This might be the end of the school year talking, though...

Ha! . I can not wait to stop packing lunches........I am so ready for summer!


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I have a meeting set with the director and nurse on Tuesday.  I will have to get my ducks in a row and figure out how they can make things safer for my son.  Who knows maybe if I'm lucky someone will have done some research and actually understand what celiac is and have some suggestions.  


Allison

Undiagnosed with DQ8 gene and have had symptoms for 20+ years. Gluten free since March 2015

Son - DX celiac via blood 3/2015 and biopsy 5/2015 (age 3) - gluten free May 2015

 

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I have a meeting set with the director and nurse on Tuesday.  I will have to get my ducks in a row and figure out how they can make things safer for my son.  Who knows maybe if I'm lucky someone will have done some research and actually understand what celiac is and have some suggestions.  

 

They will not have. I would be 99.9% they know little to nothing about Celiac nor how it would be something they need to help you manage in a school environment.

 

Some things you may or many not have thought that YOU will need to teach them is:

 

1) Ply-doh-  This is a huge no no for kids with Celiac.  Some places will bring in gluten-free playdoh AND tools.  Some will just remove it from the class room totally.  Some wll ask you to provide your kid with tools and playdoh.  It's up to you how to deal with it.

 

2) Food boxes used for play. Again, you have to decide what you think about it if they have them in the school.

 

3) Box of safe snacks for those last minutes birthday parties and celebrations

 

4)  BYOF- If you are going to bring in all your kiddos food or what. 

 

Those would be the first things I would want them to learn about.  It's a baby step kind of thing and if the teacher is being reasonable then that's a great start!

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