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janelyb

How To Deal With Preschool?

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Background: my son has a few mild special needs and goes to a full inclusion program that in run by both the County of Ed and mainstreams the kids in Headstart preschool. We had his annual IEP meeting this week.

Now before I went into the meeting the spec. ed teacher(county employee) mentioned to me that Head start was probably bring up the whole diet issue. And sure enough they did, I swear headstart is a great program but has so many loop holes to jump through and they are often impossible to work with. So for those of you who don't know, he has celiac disease, he can not have wheat,rye,oats or barley. Several months back headstart was providing replacements, until they started to send in inappropriate subsitutes like Gerber Baby cereal. I drew the line and said I will provide his main meal and they provide fruit/veggie/milk. We all agreed upon this, just a few months ago. It has been working out fine until now. Some new lady and I can't even recall her name (she said she was a nutrtionist with headstart) came to the meeting and was trying to get me not to provide meals. She says headstart wants all the kids to eat the same or simular things. The staff verified at IEP that it hasn't bothered Tyler nor the other kids of his food being different than theirs. I expressed my opinion in how my home is gluten free and I prefer to prepare his meals that way I know for sure what he is eatting and to avoid any cross contaimination. This lady went on to saying how they know about cross contaimination and they follow guidelines to prevent it, bla bla....

So anyhow how that section ended is I agreed to meet with their head cook to discuss the menu to see if there was any way they can provide food. I don't know why I agreed to that now because I still feel very strongly about wanting to be the one to provide the food. So when this meeting does occur I will voice my concerns and highly say I want to provide and I will do my best to match their menu. I just don't understand why we have to "fix" something that isn't broken, our current plan works just fin!

I don't know how other families deal with headstart, so far administration and paperwork is a pain in the rear end. I guess it must be easier to deal with them if your child does not have any special needs.


Janel (me): gluten-free since 4/10/07; casien free 5/1/07;soy light 10/07

**LOST 35 lbs since April 2007(much needed weight loss)**

ds(6 yrs)- gluten-free since 3/19/07; casein free 5/2/07;soy free 10/07

HLA-DQ 3,3 (Subtype 7,7)

new dx= Hirschsprungs Disease w/cecostomy

the non believers, only allergen free eatting at home because they have to be:

Hubby: refuses to eat Gluten-free Casein-free except for dinner

dd(14 yrs)- refuses to go along with any special dietary retrictions *I suspect dairy/wheat intollerant*

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I totally see where you are coming from. I think my son may be getting an occasional glutening from his babysitter's home. :( I also understand that they don't want your son to feel different than the other children. If I were you, I would tell them that you have thought it over and it is not worth the risk to his health to have his meals prepared in a gluten containing facility. Ask them to please provide you a menu of the week's lunches to that you can try to prepare things that are similar for your child. Realistically, cross contamination is a very difficult issue to tackle, and I would not expect government employees who are cooking for many children to be able to accommodate it. I know that it took me a while before I remembered to wash my hands after each time that I touched gluten or to stop putting gluten free utensils down of the counter surface, and so on.


Jenny

Son 6 yrs old, Positive blood work, Outstanding dietary response, no biopsy.

Household mostly gluten free since 3/07

Me: HLA-DQ 02 & 0302 (DQ 08), which I ran & analyzed myself!Currently gluten lite, negative tTG, asymptomatic

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You really are in a pickle! My kids have food allergies and I have Celiacs. I don't know much about the IEP program, but I'll tell you what I've done when the schools were causing problems.

My daughter's daycare found her Peanut allergy by feeding her Nutter Butters even though there was a huge sign about no nuts in the building. She was eventually removed from that school. The next daycare owner told me that the only anaphylactic reactions are from nuts - nothing else. (Not true) He took a while to straighten out. But in the process I learned a lot.

First call your local school district and talk to the head of nursing. Find out how they handle severe food allergies and Celiacs. The should have a policy in place. Some of those policies may affect your son's school, or if not could be used as a justification on how things need to be handled from now on. (Our last school district never even heard of Celiacs. The current school district claims they feed celiacs gluten-free meals in the lunch room. I would never trust them to get it right.) Don't call the local school, they don't always implement policies correctly. (At the elementary school she would have attended, they served P&J every day and my child would have to eat in the classroom with the teacher! Not acceptable! Not district policy!

Next, have a 504 implemented. You mentioned your child had special needs, so you may already have one. The 504 does cover food allergies. If needed, have you doctor write a blurb about "mom providing a gluten-free meal everyday." But be careful with this. You may end up with a school that will refuse to feed your child anything that mom did not provide. That can be a real pain too!

Personally, I have always found that being a very hands on parent, spending time in the classroom at first, talking to the teachers, etc to be very helpful. In the end, the teacher must be your best friend.

Make one person responsible for reading labels. Perferrably the teacher.

Provide a "Safe Snack box" that you restock frequently.

If they have class parties, you need to get with the teacher before to help make a safe party environment.

Finally, if they really give you a problem about all meals being the same I would go off on a tangent aboutthe kids being main streamed, but not being taught tolerance or that everyone can be different. Maybe everyone in the school has special needs, but one of those needs for your child is that he eat special foods. And the consequence of a mistake is too big to risk them preparing the meal. You will make a best effort to provide similar foods for your child.

All of the children in my daughter's classes and programs have always learned something about allergies and tolerance toward each other. The teacher and my coworkers always learn about food processing and food handling. Sometimes it is a pain, but pester them until it is done your way. Your child, you are ultimately responsible for his health.

Sorry it is so long, but schools really frustrate when they are run by idiots!

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Well yes he has an IEP which is like a 504, but for special needs kids. This program is unfortunately not at all connected to my school district. It is a federally funded program, typically for low income families but because the program includes kids from the county special needs program that is how he got in. (sorry it is confusing to explain but he is consider dual inrolled in both the headstart and the county program...the county oversees the special ed piece and the headstart includes in 100% each day with typical kids).

Because it is headstarts school they make the rules. They don't celebrate anything, no holidays, no birthdays, nothing. No snacks or extra food is not allowed. They are only allowed to serve the food that is provided to them by the kitchen/food service.

They do have a note from a doctor stating no gluten and I've provided extra material to explain what no gluten means. They don't have a nurse but the County program does and she agrees with me, if I want I provide the food.

I do need to speak with an administrator but I'm not sure who, oviously someone above the site director. We currently have aplan in place and all of the sudden they now want to change it. I really think it was one of the teachers in the class who called on it to somone else; I think because she is questioning the nutritional value of some of the food I send; I really think the times I have sent in cereal (lil einstiens) is what made her think this way. She hasn't ever spoken to me about it but I get that feeling.

One thing the nurse did say at the meeting which I should have spoken up is that Celiac is not serious because for my son it cause intestional discomfort and rashes; it's not like it is an anaphalxis thing to worry about. She wasn't meaning it to come out that way, I think she was meaning to say he can tollerate others eatting wheat around him without getting ill.

You really are in a pickle! My kids have food allergies and I have Celiacs. I don't know much about the IEP program, but I'll tell you what I've done when the schools were causing problems.

My daughter's daycare found her Peanut allergy by feeding her Nutter Butters even though there was a huge sign about no nuts in the building. She was eventually removed from that school. The next daycare owner told me that the only anaphylactic reactions are from nuts - nothing else. (Not true) He took a while to straighten out. But in the process I learned a lot.

First call your local school district and talk to the head of nursing. Find out how they handle severe food allergies and Celiacs. The should have a policy in place. Some of those policies may affect your son's school, or if not could be used as a justification on how things need to be handled from now on. (Our last school district never even heard of Celiacs. The current school district claims they feed celiacs gluten-free meals in the lunch room. I would never trust them to get it right.) Don't call the local school, they don't always implement policies correctly. (At the elementary school she would have attended, they served P&J every day and my child would have to eat in the classroom with the teacher! Not acceptable! Not district policy!

Next, have a 504 implemented. You mentioned your child had special needs, so you may already have one. The 504 does cover food allergies. If needed, have you doctor write a blurb about "mom providing a gluten-free meal everyday." But be careful with this. You may end up with a school that will refuse to feed your child anything that mom did not provide. That can be a real pain too!

Personally, I have always found that being a very hands on parent, spending time in the classroom at first, talking to the teachers, etc to be very helpful. In the end, the teacher must be your best friend.

Make one person responsible for reading labels. Perferrably the teacher.

Provide a "Safe Snack box" that you restock frequently.

If they have class parties, you need to get with the teacher before to help make a safe party environment.

Finally, if they really give you a problem about all meals being the same I would go off on a tangent aboutthe kids being main streamed, but not being taught tolerance or that everyone can be different. Maybe everyone in the school has special needs, but one of those needs for your child is that he eat special foods. And the consequence of a mistake is too big to risk them preparing the meal. You will make a best effort to provide similar foods for your child.

All of the children in my daughter's classes and programs have always learned something about allergies and tolerance toward each other. The teacher and my coworkers always learn about food processing and food handling. Sometimes it is a pain, but pester them until it is done your way. Your child, you are ultimately responsible for his health.

Sorry it is so long, but schools really frustrate when they are run by idiots!


Janel (me): gluten-free since 4/10/07; casien free 5/1/07;soy light 10/07

**LOST 35 lbs since April 2007(much needed weight loss)**

ds(6 yrs)- gluten-free since 3/19/07; casein free 5/2/07;soy free 10/07

HLA-DQ 3,3 (Subtype 7,7)

new dx= Hirschsprungs Disease w/cecostomy

the non believers, only allergen free eatting at home because they have to be:

Hubby: refuses to eat Gluten-free Casein-free except for dinner

dd(14 yrs)- refuses to go along with any special dietary retrictions *I suspect dairy/wheat intollerant*

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Can you just refuse to let them provide any food for your son? You don't have to agree to the IEP, at least that's how it is here in Texas. If you do refuse to sign, it goes a step further into mediation or something like that......which schools really like to avoid. So I don't know why they'd waste their time and money when the easiest solution is to just let you provide his food. That is your legal right as his parent.......don't let them push you around, those programs try stuff like that ALL the time. Although fighting to not let you bring his food seems a little backwards to me!

I have two school age children, my 5 year old has special needs but is in the public school system now. I have provided all of their food, and actually prefer the school not feed them anything I haven't provided. I don't trust anyone to prepare their food or to really know what's safe and what's not. If there is something the class is going to have that day, the teacher always asks me in advance. The kids could care less that they are eating something different, most of the time the other kids in class do not even notice.

Good luck...I would find out all I can about what your rights are in that particular program, b/c you should be able to provide his food. Let us know how it goes!


Tamara, mom to 4 gluten & casein free kiddos!

Age 11 - Psoriasis

Age 8- dx'd Celiac March 2005

Age 6- gluten-free/cf, allergy related seizures

Age 4 - reflux, resolved with gluten-free/cf

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In our situation the food piece is not actually on his IEP, but maybe I should get it writen in that way it might be less hassle. It's not the IEP team it is the Headstart program that is the one having an issue. It is very fustrating.

I'm hoping this program will continue to let me provide food.

Can you just refuse to let them provide any food for your son? You don't have to agree to the IEP, at least that's how it is here in Texas. If you do refuse to sign, it goes a step further into mediation or something like that......which schools really like to avoid. So I don't know why they'd waste their time and money when the easiest solution is to just let you provide his food. That is your legal right as his parent.......don't let them push you around, those programs try stuff like that ALL the time. Although fighting to not let you bring his food seems a little backwards to me!

I have two school age children, my 5 year old has special needs but is in the public school system now. I have provided all of their food, and actually prefer the school not feed them anything I haven't provided. I don't trust anyone to prepare their food or to really know what's safe and what's not. If there is something the class is going to have that day, the teacher always asks me in advance. The kids could care less that they are eating something different, most of the time the other kids in class do not even notice.

Good luck...I would find out all I can about what your rights are in that particular program, b/c you should be able to provide his food. Let us know how it goes!


Janel (me): gluten-free since 4/10/07; casien free 5/1/07;soy light 10/07

**LOST 35 lbs since April 2007(much needed weight loss)**

ds(6 yrs)- gluten-free since 3/19/07; casein free 5/2/07;soy free 10/07

HLA-DQ 3,3 (Subtype 7,7)

new dx= Hirschsprungs Disease w/cecostomy

the non believers, only allergen free eatting at home because they have to be:

Hubby: refuses to eat Gluten-free Casein-free except for dinner

dd(14 yrs)- refuses to go along with any special dietary retrictions *I suspect dairy/wheat intollerant*

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Gosh, that sounds like a tough situation. Can you put together a ton of information about cross-contamination (and how it's nearly impossible for the school to feed him safely everyday), how celiac is serious even if he "just" gets a rash, etc, and bombard them with that? It sounds like you somehow have to convince them that there's no way they can get it right and you don't expect them to. It's taken you a long time to figure out the diet and I certainly won't want someone else going through that initial trial-and-error period on my kid.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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Argh! I can't stand people like this woman! I don't know what state you are in, but where I live we have Special Education Regional Resource Centers (SERRC), which are public, usually county-wide organizations that advocate for children with special needs and their parents. If you call them, they can provide an advocate for you free of charge who you can take with you to the meeting. People like this woman you are dealing with sometimes need to feel the unspoken threat of a lawsuit to get them in line. When my son was in preschool, they refused to let us send in yogurt for his lunch even though our family is vegetarian. It wasn't a health issue, so I just went ahead and let him eat the meat, but it irritated me, because I'm sure they would have done it for a family whose religion precluded the child eating meat.

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that's exactally what I will do and when I have this meeting with the head cook (who I'm sure doesn't actually cook the food she just orders and plans it for all the hundreds of sites in the area) I will say how can you guarentee me that his food will be cooked separately and in it's own brand new containers that haven't been previously used for other food that has gluten. Like I will say are they gonna buy new pots,pans and cooking tools because that is what my family did to avoid cross contaimination (I'd be really suprised if they'd agree to buying new stuff). If for some odd reason they did agree to buy new thing I would ask them ok how can you guarentee it will only be used for food for my child who can not have gluten or dairy.

Anyone have any good cross contaimination articles please fwd them to me.

thanks.

Janel

Gosh, that sounds like a tough situation. Can you put together a ton of information about cross-contamination (and how it's nearly impossible for the school to feed him safely everyday), how celiac is serious even if he "just" gets a rash, etc, and bombard them with that? It sounds like you somehow have to convince them that there's no way they can get it right and you don't expect them to. It's taken you a long time to figure out the diet and I certainly won't want someone else going through that initial trial-and-error period on my kid.

Janel (me): gluten-free since 4/10/07; casien free 5/1/07;soy light 10/07

**LOST 35 lbs since April 2007(much needed weight loss)**

ds(6 yrs)- gluten-free since 3/19/07; casein free 5/2/07;soy free 10/07

HLA-DQ 3,3 (Subtype 7,7)

new dx= Hirschsprungs Disease w/cecostomy

the non believers, only allergen free eatting at home because they have to be:

Hubby: refuses to eat Gluten-free Casein-free except for dinner

dd(14 yrs)- refuses to go along with any special dietary retrictions *I suspect dairy/wheat intollerant*

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I will keep it in mind, I hope we don't have to go that far since they have already allowed me to provide food up until now that they are trying to go back on our agreement. Currently I am still providing food until June 7th and summer school starts in July. So they have from now till July 2 to contact me to try to change our plan, otherwise the current plan stays in place.

Argh! I can't stand people like this woman! I don't know what state you are in, but where I live we have Special Education Regional Resource Centers (SERRC), which are public, usually county-wide organizations that advocate for children with special needs and their parents. If you call them, they can provide an advocate for you free of charge who you can take with you to the meeting. People like this woman you are dealing with sometimes need to feel the unspoken threat of a lawsuit to get them in line. When my son was in preschool, they refused to let us send in yogurt for his lunch even though our family is vegetarian. It wasn't a health issue, so I just went ahead and let him eat the meat, but it irritated me, because I'm sure they would have done it for a family whose religion precluded the child eating meat.

Janel (me): gluten-free since 4/10/07; casien free 5/1/07;soy light 10/07

**LOST 35 lbs since April 2007(much needed weight loss)**

ds(6 yrs)- gluten-free since 3/19/07; casein free 5/2/07;soy free 10/07

HLA-DQ 3,3 (Subtype 7,7)

new dx= Hirschsprungs Disease w/cecostomy

the non believers, only allergen free eatting at home because they have to be:

Hubby: refuses to eat Gluten-free Casein-free except for dinner

dd(14 yrs)- refuses to go along with any special dietary retrictions *I suspect dairy/wheat intollerant*

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that's exactally what I will do and when I have this meeting with the head cook (who I'm sure doesn't actually cook the food she just orders and plans it for all the hundreds of sites in the area) I will say how can you guarentee me that his food will be cooked separately and in it's own brand new containers that haven't been previously used for other food that has gluten. Like I will say are they gonna buy new pots,pans and cooking tools because that is what my family did to avoid cross contaimination (I'd be really suprised if they'd agree to buying new stuff). If for some odd reason they did agree to buy new thing I would ask them ok how can you guarentee it will only be used for food for my child who can not have gluten or dairy.

Anyone have any good cross contaimination articles please fwd them to me.

thanks.

Janel

I'd print off a list of celiac-related diseases, here's a link to a list: https://www.celiac.com/st_main.html?p_catid...-55107413872.96

You can emphasize that some of these are short-term (e.g. behavioral issues, does the school really want to deal with a kid who might get ADD symptoms when glutened) and long-term.

Or how about Gluten Causes Brain Disease: https://www.celiac.com/st_prod.html?p_prodi...-25107507472.a8

How about the list of things to watch out for: https://www.celiac.com/st_prod.html?p_prodi...-29107507472.e5

Or the can't have list:

https://www.celiac.com/st_prod.html?p_prodi...-29107507472.e5

I'd be overwhelmed already if you came in with all this info.

I don't have anything about CC so I tried to find a definiton of how much gluten would be harmful.

I found this article: https://www.celiac.com/st_prod.html?p_prodi...-28107424272.61

At the end it sortof states how many ppm of gluten can be harmful. It also illustrates that gluten can show up in the weirdest places that I would never expect a school to know about.

Another article about the FDAs proposed gluten-free labeling being at less than 10ppm:

http://supermarketnews.com/fresh_market/fd...definition_452/

I'd say that's pretty hard to guarantee, especially if they are cooking with wheat flour.

You might also want to ask if all the cooks will be using gluten-free personal care products. Yes, they are supposed to be washing their hands and wearing hair nets, but can you honestly say that no cook is ever going to scratch an itch on their nose or brush their forehead?


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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((((HUGS)))) I'm sorry they are giving you so many problems. My son goes to a head start program, but they have no problem with me bringing his own food. I am surprised, but none of the kids mind that he has different food. The kids even asked me if I have "allergies" (I help out several days a week). I know gluten intolerance isn't really an allergy, but it is too hard to explain that to 3 and 4 year olds. I don't know if I have any info to give you, but I wish you lots of luck. Like gluten intolerance isn't hard enough!

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((((HUGS)))) I'm sorry they are giving you so many problems. My son goes to a head start program, but they have no problem with me bringing his own food. I am surprised, but none of the kids mind that he has different food. The kids even asked me if I have "allergies" (I help out several days a week). I know gluten intolerance isn't really an allergy, but it is too hard to explain that to 3 and 4 year olds. I don't know if I have any info to give you, but I wish you lots of luck. Like gluten intolerance isn't hard enough!

Can I ask what state you are in? Maybe it is different from state to state or county to county. I'm in California.

Seriously all was fine until one teacher started to question the nutritional value of the food I sent in. Really it was cereal (I was sending in the Einstein cereal a few days in a row).


Janel (me): gluten-free since 4/10/07; casien free 5/1/07;soy light 10/07

**LOST 35 lbs since April 2007(much needed weight loss)**

ds(6 yrs)- gluten-free since 3/19/07; casein free 5/2/07;soy free 10/07

HLA-DQ 3,3 (Subtype 7,7)

new dx= Hirschsprungs Disease w/cecostomy

the non believers, only allergen free eatting at home because they have to be:

Hubby: refuses to eat Gluten-free Casein-free except for dinner

dd(14 yrs)- refuses to go along with any special dietary retrictions *I suspect dairy/wheat intollerant*

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