New here, but need help before meeting with principal

[LianneV]

Hi everyone,
I need some help please.  My son is 5 years old and is in kindergarten.  He has an extremely severe peanut allergy, as severe as it gets.  He has all the forms on file with the nurse, epipens in her office etc.  When he first started school things were great.  Until last week, when he informed me that everyone else got to eat "yummy cupcakes" but the nurse didn't check them and the teacher wasn't sure so he got goldfish.  Aside from the unfairness of a 5 year old watching everyone else enjoy them, I was very concerned with the safety issue.  Come to find out recently 2 sets of parents created a huge fuss cause their cupcakes didn't make it to the classroom cause they weren't safe, and so they CHANGED the policy.  Without informing parents.  Now even something listed containing nuts can go through with a tag on it saying so and it's up to the teacher to "use caution" I am so angry. What if I kicked up a fuss and demanded my son bring a knife? Do they just normally change their policy anytime a parent complains? So I'm waiting to hear back from the principal to set up a meeting, but I need some help with what I should bring with me, if there's any official paperwork to make it go back the way it was.  From my understanding it is a school district policy so can the school change it?

[CMdeux]

School "policy" can be changed whenever school administration sees fit.

THIS is why all children who depend upon particular protocols must have those details included in a 504 plan.  The reason why that is superior to school policy is that a disability plan CANNOT be unilaterally changed at will.

The school has changed the safety of your child's access to the educational environment (by allowing his allergen into a previously allergen-controlled environment) and they have denied him inclusion on the basis of his food allergy (by singling him out to eat crackers while other children ate cupcakes).

IMMEDIATELY request evaluation under section 504, which grants that qualified individuals with a disability (food allergy qualifies if it is life-threatening) shall be included in all educational activities to the same extent as non-affected peers.

[CMdeux]

Also-- do NOT discuss accommodations until you have elgibility in writing.

Because until/unless he's found eligible,



well.  You've already seen what he's entitled to, in that case.  Whatever WHOever decides he gets in the way of safety and inclusion with his classmates, basically.   


DO have a list of absolute REQUIREMENTS for him to: a) safely and b) inclusively, attend school.  Don't get into the list of specifics, though, until you have eligibility established, and DO NOT be side-tracked by "policy" covering those items, or by the notion that they could be included in a "health plan."  Practice saying (cheerfully/pleasantly/neutrally); "That's wonderful.  Since you're already doing that, let's include it in {child}'s 504 plan, too."  (As though it will be NO PROBLEM to do it-- after all, why WOULDN'T they want it in writing if they are promising it to you, hmmm?)

  This could be things like him not using the drinking fountain but a water bottle instead, having classmates wash/wipe hands after snacks/meals, a special seat in the cafeteria, desks being wiped down/washed by the teacher, having his epinephrine kept WITH him (ie-- teachers carry and keep it, not having it locked in a nurse's office), etc.  Inclusion means that it isn't okay for the teacher to plan to do a huge food project while your child sits in the principal's office.     I realize that this sounds far-fetched, but trust me, if they think him watching his classmates eat cupcakes is fine, it's a short mental step to "sending him to the office" so that the rest of the class can do "fun stuff" without him.

You'll need ADVANCE NOTICE of food in the classroom-- period.  You will also need to consider how to handle subs, or days when the nurse isn't present. 

[lakeswimr]

They should have informed you.  First things first--I'd want to make sure my child will be safe.  If the classroom is no longer peanut and nut-free what are they doing to prevent allergens from being spread around the classroom?  ARe they having the children sit slightly apart from your child while everyone has the treats but your child (infuriating that they allow that but you don't want those treats right next to your child!) and having others wash hands and then is the teacher cleaning desks and under desks for crumbs?  Is your child of the age where he can be relied upon to not pick up a crumb and eat it?  I'd work on that first.

I'd also request a 504 if you don't yet have one.  if you do then they can't change the plan without you so I'd protest that!  Oy!  I'm sorry.

You may or may not get them to change this.  You may have to use a treat box that you leave at school so your child can have something while others get cupcakes.  It is very unfair but it is a lot safer than letting  your child eat things other people bake.  Even cupcakes that others say are 'nut free' may be cross contaminated and it isn't safe to let others bake for children with food allergies.  people have died eating baked goods others made and mistakenly cross contaminated.  Even touching an allergy-free food with a cross contaminated knife or spatula can cause a life threatening reaction or worse in people who are allergic. 

What would you like to have happen at birthdays?  Would you prefer no treats allowed?  Would you prefer people to have to choose from some prepackaged treats that you get to check the label for before they are served?  I'd at least ask for what you want. 

Even if you do not have a written plan i would complain that they changed accommodations without notifying you.

I like the analogy Gina Clowes made on her Allergy Mom's ebook that you can get on her website--schools do not allow people to pass out birthday cards at school unless they are inviting everyone so no one will feel excluded so why do they allow children to serve 22 cupcakes to a 23 child class?  It isn't nice or fair!  I can't imagine doing that! 

My son's school did away with birthday cupcakes under the wellness policy but before then I sent in his cupcakes.  I kept them in the freezer, pre-made including pre-frosted.  They held up well in zip loc freezer bags.  I sent them in cup-a-cake holders and also had a treat box with cookies, chips, candy, etc in it and popsicles in the school freezer.  i sent enough for the other FA child in his class.  I didn't like that they allowed this and was very happy when the birthday treats were done away with.  They have a few food events each school year which is a lot better than all those bdays and the food events, both.  Good luck making positive change.  ((((hugs))))

[lakeswimr]

CM--great post.  I would take care of safety issues regarding cupcakes wtih nuts in the classroom now, though, but otherwise I totally agree.

Also-- do NOT discuss accommodations until you have elgibility in writing.

Because until/unless he's found eligible,



well.  You've already seen what he's entitled to, in that case.  Whatever WHOever decides he gets in the way of safety and inclusion with his classmates, basically.   


DO have a list of absolute REQUIREMENTS for him to: a) safely and b) inclusively, attend school.  Don't get into the list of specifics, though, until you have eligibility established, and DO NOT be side-tracked by "policy" covering those items, or by the notion that they could be included in a "health plan."  Practice saying (cheerfully/pleasantly/neutrally); "That's wonderful.  Since you're already doing that, let's include it in {child}'s 504 plan, too."  (As though it will be NO PROBLEM to do it-- after all, why WOULDN'T they want it in writing if they are promising it to you, hmmm?)

  This could be things like him not using the drinking fountain but a water bottle instead, having classmates wash/wipe hands after snacks/meals, a special seat in the cafeteria, desks being wiped down/washed by the teacher, having his epinephrine kept WITH him (ie-- teachers carry and keep it, not having it locked in a nurse's office), etc.  Inclusion means that it isn't okay for the teacher to plan to do a huge food project while your child sits in the principal's office.     I realize that this sounds far-fetched, but trust me, if they think him watching his classmates eat cupcakes is fine, it's a short mental step to "sending him to the office" so that the rest of the class can do "fun stuff" without him.

You'll need ADVANCE NOTICE of food in the classroom-- period.  You will also need to consider how to handle subs, or days when the nurse isn't present.

[Lianne]

He has a health plan on file, but not a 504.  To be honest I've seen it mentioned many times online, but was never really sure what it was.  Can they refuse to put a 504 plan for him?  Would I need extra information from his allergist?  I swear they made me call and fax him at least 5 times at the beginning of the year to make sure everything was perfect, then they go and do this!  That is so true about the birthday invitations! I will be sending in some safe treats with him tomorrow when he has school.
I shouldn't mention specifics until he's been deemed eligible, so how long does that normally take?  Does it go over the principal and school district nurse's head (she'll be attending the meeting too) I'm a little confused, I should just have a list of requirements not accomodations?
My son has had it drilled into his head that he never takes food from others and he's old enough not to put crumbs in his mouth, but once a classmate (at a peanut free preschool no less) somehow had peanut butter on their hands and he broke out all over his arms and legs so the idea of a messy treat just inches from him bothers me.  I wonder if they think I'm over reacting but if he gets some of it on his hands and rubs his eyes or for whatever reason puts his fingers in his mouth then what?
It's frustrating because I hate being the "problem" person but it's my son's safety, I have no choice but to fight this.  I already heard a parent complaining the first week about his peanut allergy, she didn't know I was the mother of the peanut allergy kid, when she was complaining to the principal about the list of safe snacks they have to choose from.
The thing is, in their defense, peanut free cupcakes or any kind of pastries are virtually impossible to find.  No place is willing to say they are safe so to avoid their own lawsuits they all say they may have been cross contaminated.  I can't imagine how much parents would protest if I asked that they bring in hershey kisses, or skittles or lollipops cause at least I'd feel better about that.  Shoot if I was a better baker, I'd offer to make all the cupcakes everytime a kid had a birthday.

[CMdeux]

The underlying issue, though, is this:

how safe will a contact-sensitive child feel in a classroom where an allergen is routinely served (non-instructionally, no less!!) several times a month and without notice to you first?

Do consider carefully whether or not serving birthday treats in the classroom like this is a good idea going forward.  It's certainly setting up a situation which is almost inevitably going to be an opportunity for a series of errors at some point down the line.   


Some other alternatives that I have heard of from other parents in this community:

a) treats are not permitted for birthdays-- period  (they don't meet most district wellness policies now anyway, aside from food allergy concerns)

b) treats are eaten in the cafeteria, not in the classroom, and child has his/her own safe version or can choose something from a parent-provided treatbox

c) you are notified when it happens and the treats GO HOME at the end of the day.  This is my personal favorite, and most teachers like it too-- no mess in the classroom AND no safety risks all day during instructional time, AND you know how often the exclusion is happening.  I might even enlist the school counselor/principal in this one-- as in, s/he needs to CALL to let you know that treats are going home with kids... that way, see, you can be there with something special for your child, too, when he's picked up.  Heheheh... this also has the impact of making it CRYSTAL clear to administrators how frequent and pervasive this kind of exclusion is.  You would be ASTONISHED at how it adds up if the teacher and administrators allow this crapola to go on in classrooms.  It can literally be weekly and at random otherwise.

I also, PERSONALLY, don't like the 'safe treat box' for a series of reasons:

a) safety.  What if someone else 'borrows' from it and replaces items with what they THINK is 'close enough' to the original items? 

b) how 'equal' is it for parents to have to provide for this at our own expense so that the school can "out" a child's medical condition at will, anyway?

c) many times, the child who is shy/retiring will not insist on being allowed to choose something from the box, and the teacher may well forget, too... plus, how safe is it if teacher has been handling goopy cupcakes and then handles your child's 'safe' treat?

d) subs can EASILY make a mistake if treats are allowed into classrooms for distribution there.  This is the TRULY scary one... what if your ds is trusting enough to believe a claim by another adult that something is "safe" for him to eat?

[lakeswimr]

I think a safe treat box is safer than, say, having treats served by others when I can't be there.  If DS only eats food from home or that I provide or from his treat box (and everything in the box has a special mark on it DS knows to look for before eating) it helps eliminate him accidentally getting served an allergen, having another parent x-contam his food, etc.  The outside of the box even says, "please wash hands before handling contents."  At a recent party where I was present another parent touched allergens and then touched safe food on DS's table even with me there!  Luckily she didn't x-contam the food DS was going to eat on another plate but if I weren't there DS could have easily ended up eeating the food she x-contamed.  I don't trust anyone else.  I don't trust parties if I can't be there.  I don't want others label reading for me. 

The only way I like parties is either food-free or with me providing all the food.  If I can't be there due to work then I don't like the idea of DS eating food others have anything to do with.  Recently my nephew had a party where some foods were allergens and some weren't.  His mom was too worried that the other parents would x-contam the allergy-free food while distributing treats and felt it was not worth it so sent all his own food in a separate container. 

It stinks to eat separate food.  it stinks more to have  your food xcotnamed and end up in the hospital.

My first choice is same food and safe for all (well, really no food is my first choice).  But if that cant' happen and other parents have anything to do with it I don't trust them.  Not because I think they would intentionally hurt DS.  They wouldn't.  But mistakes happen.  I have seen a bunch of x-contam mistakes at the many school parties I have attended and prevented my son and the other FA child from eatiing xcontamed food many times.  So, whatever the OP decides I recommend thinking about how the food and untensils and napkins, etc will be kept x-contam-free.  How will other parents be informed of this?  How will you know someone didn't just eat trail mix in their car and then come pass out allergy-free pretzles or napkins or whatever?  Or that someone won't pass out something that you didn't get to check that was sent in last minute? 

I have fought hard for DS to be fully included this year only because I am able to get time off to attend the few parties there will be.  Otherwise I would just send safe food for him and forget it.

[rainbow]

All above is what you need to know.   What I'd add is...

Very concerning that they asked for all your information but are not keeping you informed as far as what is being served in the classroom -- and practically seems like they are hiding information. They are also bowing to cupcake queen mom complaints --- at the expense of your child's SAFETY.

Timing is "good" for you because sadly, you can provide them with a compelling article about the 7yo child that died last week in a VA school - it's believed a peanut product was somehow "shared" with her.

You need to
1) Request 504 in writing
2) Request in interim that you be INFORMED of all snacks being served in the classroom
3) Remind them your child has both ingestion and contact reaction history
4) state you are very concerned about SAFETY, and also inclusion of your child based on his disability of Life threatening food allergies - it is ESSENTIAL that you use the words "LIFE THREATENING" -- check www.wrightslaw.com (search on "peanut allergy" and an article will come up that explains this)

We can help you through this.  Most of us have been there with a Kindergartner. 

REiterate this needs to be done ASAP due to the LIFE THREATENING nature of your child's food allergies.

[rainbow]

Be careful about precedent with treat box.  It gives them a license to exclude your child, and it will set precedent that you are "ok" with that (some of us are, some aren't).  My personal experience was that in K/1st -- when my child was so young and really not able to self-advocate -- the teacher, or the sub, etc couldn't FIND the treat box. It kept getting "lost" in the supply closet. Also another child in the class had peanut allergy but that child had some anxiety and was "happy" to sit and eat nothing. I was told my son should "take a cue from that child because that child was fine sitting with nothing"...Ummm NO.  My child was hungry and wanted a treat like all the other kids (interestingly that child was also underweight - NOT a good cue for my athletic kid).

More commonly, the other allergy kids will share in the homemade cupcakes etc. without any regard for LTFA risk (ie, cross contamination, unverified ingredients, etc).  So it is confusing for the teacher, child, etc when one allergy child can eat a treat brought in by a parnet, and the other LTFA child cannot.

AAFA and AAAAI both suggest either NO shared treats, or only shared treats that are PACKAGED with an INGREDIENT LABEL (but YOU should still read it - how will they ensure this occurs?).  Don't feel guilty asking for this, as it is a required practice by state law in some states. And in many places, schools are no longer allowing birthday treats (due to food allergies, obesity, curriculum time, etc).

[Lianne]

Thank you all for all this information. I would rather he get to share in it with others, but it seems like cupcakes are the only way for people to celebrate birthdays.  I don't like that he has a treat box, but if it's that or a plain snack at least he gets some sort of a goody.
I never really thought about crosscontaminating, I will be sure to make a point that if it has to be from the treat box, he is to receive his first before the cupcakes are opened.  The thing is, this shouldn't even be an issue, as if it was deemed unsafe it shouldn't be in the classroom anyway.  I mean his nurse, she calls companies and asks if she isn't sure, she's wonderful.  It's a policy she protested but she's "just" the nurse.  It's insane that they'd rather listen to parents whine about their kids  not able to hand out cupcakes than to the nurse or to me who is trying to keep my son safe!  I'm sure they're not going to like the pain I'm being forced to be, but I'm very angry about how they kept the change in policy from me.  As far as I knew anything that made it's way there was ok. 
I don't want to feel this way, but I feel like they hope parents are laidback about it so they don't have to do as much work, such as calling me when food is coming in, making sure parents notify them if they're bringing it in, all that, but tough luck.

[rainbow]

That's great you have a good school nurse. Worth weight in gold. 

[eggallergymom]

The safe treats box worked for my daughter in kindergarten, but didn't work in first grade, when my DD's teacher brought in homemade pudding and served it to the class. My DD knew I'd spoken at length with the teacher about her LTFA to eggs. so she thought the pudding was safe. She ended up anaphylaxing at school, anaphylaxing again in the E-R, and ultimately was admitted for 2 days. The fine people on this website saved me (and likely her) by pushing me in the right direction on a variety of fronts. She now has a tough 504 plan, and our district has a new food allergy policy that has meant new training procedures for teachers, new restrictions on where kids can eat homemade treats (the cafeteria), etc. Lianne--do you know what kind of safety training the teachers have? I know you said you have Epi pens in the nurse's office. Is the nurse always there? Does she ever leave the building? How far is the nurse's office from your son's classroom? Could you ask that his teachers be trained on the Epi, too, and that you keep a pen or two with him?  I also agree with Lakeswimmr that you need to shore up the safety in his room in terms of cross-contamination while you "negotiate" the rest of this stuff. Our 504 process took a few months, beginning to end, and that was probably quick compared to most, because we had some real momentum, given the school's liability in what happened to our DD. I hope your son stays safe and healthy, and that you're able to get the 504 plan for him!

[AllergyMum]

If you want to do a safe treat box label each individual thing that you put in the box with your child's name.  Then make sure your child knows that he/she can only eat things that are specifically identified as theirs.  At my son's last school we did this and had yellow stickers with his name on them, if he saw a yellow label he know it came from us.  Our new school does not allow any treats so we no longer need a safe treat box.

[lakeswimr]

We also put a special mark on each thing in the treat box and any treats I send to school for DS or check for the teacher for other things so he knows to look to see the special mark.  No mark = don't eat it.