New here, but need help before meeting with principal

[Carefulmom]

I agree that the safe treat box is unsafe for the reasons that some others have posted above.  I don`t think it is the job of a 5 year old to make sure that teacher washed her hands before giving the allergy child his treat.  Not to mention substitutions of a different brand of a similar item which is unsafe.  And it definitely encourages exclusion.  It eases teacher`s guilt about having unsafe food for the other kids if the allergy kid has his safe treat.  It encourages impromptu passing out of food.  It encourages food rewards, because then the allergy kid can have his safe treat while others eat the unsafe food.  If the child`s allergen is passed out in class, I would be concerned about residue on the books, computers, etc.

Here is how we handled it in our 504:
1.  I was to be given a list of birthdays when school started.  Whenever there was a birthday I put a cupcake in dd`s lunchbox.  In kindergarten I think it is important to teach the allergy child to only eat what came out of his lunchbox.  It will prevent accidents later by teaching him that just because teacher tells him something is safe, doesn`t mean it is safe.  Sometimes dd got lucky if the birthday was on a Saturday or Sunday, because then if there were no cupcakes brought in on Friday, she still got her own cupcake.  Sometimes she got lucky if the birthday parent never brought in cupcakes, dd still had hers in her lunchbox.  I kept unfrosted cupcakes in the freezer, and when we were expecting a birthday, I  took one out which dd got to frost and decorate.  She put a ton of frosting and sprinkles on and hers usually looked better than the store bought ones that other parents brought.

2.  Dd`s room was food free.  Cupcakes were passed out at the end of the day outside.

3.  Under no circumstances was dd permitted to eat food that had not come out of lunchbox, no matter how convinced the teacher was that it was safe.  This probably saved her life.  I cannot even count the number of times that dd was told an item was safe when it wasn`t.  The same has been true for other kids on this board. See eggallergymom`s post about her dd being told that pudding was safe when it was not.

4.  Parents were required to give teacher 48 hours notice if bringing treats.  If treats were brought in with less than 48 hours notice, they were sent home uneaten.

5.  At the beginning of each year, teacher sent home a note stating that there were allergies in the class and if parents wanted to include all children, here is a list of safe store bought treats (including brand name).  The list actually came from me.  If that happened, teacher would then let me know.  I would read the ingredients when I dropped off dd, and put one of the safe treats in dd`s lunchbox, so that later when the kids got their treat, dd got the same thing.  This really is doable.  Parents do not have to read an ingredient label.  Even with dd allergic to milk, egg, and peanut, I was able to come up with 8 or 10 things to put on the safe treat list.  About 1/3 of the time the parent brought a store bought item off the list.  2/3 of the time they brought store bought cupcakes that dd could not have.

Hope this helps.  I would stick to your guns on this one.  Your child has to be kept safe.  It is the school`s legal responsibility.  And I agree, get the 504 process going.

[lakeswimr]

Even if all the food at a party is "allergy-free" and there is no treat box the teacher still must wash his or her hands before handing out the treats.  If the teacher ate allergens at lunch she or he could x-contam all the safe food.If food comes out of a treat box with a special label on it, that eliminates the worry about someone getting the wrong brand or a different size of the food that has an allergen in it, etc.  My son always will have a treat box.  His school doesn't allow food rewards, hasn't had impromptu passing out of food treats (thus the box came back full last year and probably will this year -- it gets used more in case I forget to send snack or something).  Allergens are not allowed in my son's classroom ever.  So, none of your opening paragraph applies to our situation, Carefulmom.  And we don't have bday cupcakes, either. 

Your plan requires you to go into the school and label read.  That's nice that you can do that but it isn't practical for everyone. 

I'm glad your way works for YOU but it is not the only way. 

Again, my first choice is no food at parties.  I'm glad at the least we have only 2 or 3 food events this year and zero bday cupcakes.  I get to bring the food for the last party.  The other one is just cake for the whole grade and I'll send in cupcakes.  Thankfully not a lot of food.  I still like the treat box there.  makes me feel better to know if someone something came up he has it and won't be tempted to eat an allergen, will get SOMETHING, etc. 

[Carefulmom]

Even if all the food at a party is "allergy-free" and there is no treat box the teacher still must wash his or her hands before handing out the treats.  If the teacher ate allergens at lunch she or he could x-contam all the safe food.If food comes out of a treat box with a special label on it, that eliminates the worry about someone getting the wrong brand or a different size of the food that has an allergen in it, etc.  My son always will have a treat box.  His school doesn't allow food rewards, hasn't had impromptu passing out of food treats (thus the box came back full last year and probably will this year -- it gets used more in case I forget to send snack or something).  Allergens are not allowed in my son's classroom ever.  So, none of your opening paragraph applies to our situation, Carefulmom.

I never let dd`s teacher touch her food.  Like I said in my post, when parents did send a group treat on dd`s safe list, I took it out of the package and put it in dd`s lunch box.  The teacher never touched anything that was going into dd`s mouth.  At that young of an age, the parents walk the kids in to class anyhow, so it was no trouble to take a minute to read the ingredients on one item.  A minute of reading a box of cookies or crackers isn`t going to really make me late to work. 

No one is saying it has to be done my way.  As I said in my post:  "Here is how we handled it in our 504."  I have seen two different situations of a substitution of a similar item different brand causing anaphylaxis.  In a perfect world, every child and every teacher would look for the sticker or identifying item to show it is his.  Unfortunately, in the excitement of the party, it doesn`t always happen.  In one situation the guilty parent who ate the treat simply moved the sticker on to her replacement item.  She didn`t realize how life threatening moving a sticker could be.  It happens....unfortunately.  She was a pregnant mom at a Girl Scout meeting.  She was feeling hypoglycemic and since the allergy child was not in the troop, she had no reason to know what the sticker was about.  The troop was just using the classroom for their meetings.  It wasn`t until weeks after the anaphylactic reaction that it was figured out what happened, since the item looked the same.  The replacement item had a may contain warning, though.  Unless you were aware of the allergies and looking for the may contain, those can be pretty small.

[Lianne]

Yes his teacher is trained to use an epipen and to reconize the signs of a reaction.  They are kept locked in the nurses room which is maybe 2 feet from the office.  Both secretaries have keys to the nurses room and medicine cabinet and are trained to administer it.  All classrooms have an emergency button and his class is maybe a few seconds run from the office.  Having a wonderful nurse doesn't seem to be enough as they completely overlooked her protests and changed the policy anyway.   I will be reminding DS that he is to ask everytime if it is safe for him.  He is very well aware that he is to not share food and only eat from his own lunchbox. 
I can't imagine the complaints now when I insist I be informed 48 hours in advance.  Or if I insist on no food or just safe food even for birthdays.  I'm very saddened by how many parents would rather risk a child's life than just not buy cupcakes.  What I don't understand is by them changing the policy, forcing me to get a 504 (which I now realized I should have done anyway) is now going to make things much more difficult for them.  His teacher really does her best, I think she felt that once all the kids saw the cupcakes that it was too hard to then not hand them out so she felt like she did what was best at the time.  She let me go through every single bag of candy when we decorated gingerbread houses at christmas time, cause I had told her I was going to take him home early cause I was worried about it.  She put away every single thing I told her was unsafe and we still had tons to use and DS had a wonderful time.  I really like the idea of cupcakes being handed out at the end of the day, but how does that match with the no food on the school bus rule.  This doesn't bother me so much as DS doesn't take the bus.  But just in case there are kids on the buses with allergies. 
Do your kids schools stand their ground with the policies? That's where it all started cause parents didn't follow the rules then whined cause they didn't like the consequences.  How can I make sure that gets enforced?  All of the snacks the teacher brings in are checked by the nurse and the teacher listens to her opinion on them, so I feel safe in that. 

[CMdeux]

Well, you'll actually be doing your school a FAVOR by insisting on covering accommmodations with a formal 504 plan rather than "policy" or worse, individual off-the-record promises to you...

because if they will change policy, practices, and procedures for YOU just for "the asking" then why not for another parent, hmmm?  The answer:  they will.  Legally, there's no difference between you SAYING that you want no birthday cupcakes in the classroom (for your child's safety) and another parent saying that they want to/insist upon bringing them in for their child to share.  KWIM?

With a 504 plan, you have the backing of federal law and so does the school.  This will allow them to shrug and tell other parents that it isn't up for discussion, as it is about another child's federally protected disability.  Like I said-- in the end, a 504 plan does the school a lot of favors.  Your classroom teacher in particular sounds as though she'll be a terrific partner in your 504 plan.   


One more thing-- DO NOT NOT NOT allow your school to keep your child's only epinephrine in a locked location.  PERIOD.

If your child is in anaphylaxis, seconds matter.  What if the nurse is attending to another child at the time and isn't in her office, hmmm?  What if she isn't in the building?  How long will it take to unlock them if nobody knows exactly where the key is?  This is something that the AAAAI and FAAN both say is absolutely WRONG from a management standpoint.  Emergency meds MUST NOT be locked.

[Carefulmom]

The difference between having a rule in a 504 versus it just being a rule with no 504 is that the school can lose federal funding if they violate the 504.  If the requirement is 48 hours notice and the cupcakes come in with no notice and teacher serves them, with a 504 the school can lose federal funding for doing that.  It forces them to follow the 504 whether they agree with the rules in it or not. 

Also, I would really discourage you from telling your ds to ask others every time if something is safe.  Others often do not know what is safe for your child.  They think they do, but they don`t.  Unless you live with the allergy, it is really hard to know all the tiny little details.  The only ones I trust to read a label for dd are dd (age 16) and me.  I cannot even count the number of times dd has been told something is safe and it isn`t.  I would not teach your ds to rely on others to determine what is safe for him---only you and your husband.  The Memory thread on the old board (is it on this board?  Can someone link it?) is full of stories of kids who were told something was safe when it wasn`t.

[CMdeux]

Agreed-- even close friends and family (ie-- people who truly LOVE my daughter) have routinely made major errors in food safety, and it isn't because they don't understand how important it is, or that they aren't trying their best.

None of those errors have resulted in reactions, though, because we don't rely on others to be able to do what we do.  My daughter has grown up knowing this, and I'm very glad that we didn't do it any other way.

[Lianne]

I wasn't aware they could lose funding, thank you so much, I plan on pointing that out at the meeting today as well. 
So far here is what I will be asking.  Obviously stop allowing the allergen into his classroom.  I found out today they have lunch, go to recess then wash their hands, so I will be insisting they wash their hands before recess.  I want to be notified if a sub is coming in, so I can go and introduce myself and DS.  I will ask that a second set of epipens be allowed in his classroom (we were told that's not allowed, nor is DS allowed to keep them in his backpack cause he's so young) but now I know I can ask for that.  I will also ask that if all food is still to brought to the nurse first and if it's not on the approved safe list that they send out (I've read it and I'm ok with it) then I am to be called.  I don't want to ask that the teacher wash her hands to avoid cross contamination or before using his treat box because that would seem that I am ok with allergen foods  being in the room.
I understand about not letting him trust others.  But when he's in the classroom and I'm not there, I feel like I need to rely on a teacher.  I can't trust a 5 year old to figure out what's safe or not.  Now I need to rethink that and figure out what to do in his classroom, although hopefully that won't even be an issue.
My meeting is in 2 hours.  I'm very nervous.  Is there any other official lingo I should know to use so they know I mean business?

[Carefulmom]

My point about not trusting others was that we let dd only eat what was in her lunchbox.  No exceptions.  Then she doesn`t have to figure out what is safe, and also is not at risk for being told something is safe that isn`t.  I still remember dd being told that the cookies did not have milk, when butter was clearly on the ingredient list.  It happens. 

I`d be leery of a "safe list".  Ingredients can change any time.  Even today at age 16 we read every label of everything dd eats.  (Usually she reads it.)  I have on occasion been in the grocery store and seen different sizes of the same item with different ingredient labels.  Or one size has a may contain and the other size does not.  I personally would not let the nurse decide what is safe for my child.  She doesn`t live with the allergy.

As far as your child being allowed to have an epi in his backpack, I think it depends on the state you are in as far as whether or not it is legal.

As far as subs, the teacher should have a sub folder that has information on all the kids with 504s or IEPs.  The difficulty for us was that often the sub was called last minute, arrived after the bell rang, and did not have time to look at the sub folder until later.  I always stayed with dd until the teacher or sub arrived.  If it was a sub, I cornered her as soon as she came in and told her briefly about dd.  It was not optimal, but when they arrive at the last minute there isn`t a lot of options.

[CMdeux]

Ask for evaluation of eligibility under section 504 of ADA/ADAA, explaining that your son clearly qualifies on the basis of his profound impairment in the major life activities of:

a) self-care compared to his unaffected peers (other children his age can determine whether or not a food is safe to eat as well as adults can)

b) breathing (during reaction)

c) walking (during reaction)

d) talking (during reaction)

e) cognition (during reaction)

f) eating (duh)

g) social interaction (because of exclusion on the basis of allergy)


They should have all the evidence that they need already to establish eligibility.  They have documentation regarding his condition, his history, and the potential for fatal anaphylaxis.  They need NOTHING MORE.  No waiver, no discussion with your doc, nothing.  If they have questions for your doc, they can damned well put them in writing and include YOU in communications with your child's physician.  Anything else is "inappropriate" as it doesn't include you.  Trust me-- you do NOT want them to have unfettered access to your physician.

Once you have eligibility, figure out:

a) a plan for emergency response (run through his action plan, basically, and assign people to each task)

b) avoidance and inclusion issues--
   this includes things like whether or not he's allowed to use the drinking fountains, who MUST/CAN go on field trips, how in-class parties will be handled, use of food in lesson plans, seating and cleaning in classroom and cafeteria, handwashing/wipes procedures, etc.




finally, as Carefulmom reiterates, I'd be VERY careful about ever allowing the practice of feeding your child something which hasn't been specifically read by you (and later, your child).  Most of us have house rules that go something like every label-- EVERY time.

You're setting up a situation which technically violates that fundamental tenet if you rely on a food list.  Things change, and sometimes suddenly.  Some foods are unsafe seasonally.  Keebler, for example, has remarkably good labeling practices for peanut; but it also means that at some times of the year, as production changes, SOME cookies are unsafe that usually are safe for PA.  I appreciate knowing that they go to the trouble-- but it's on me/us to read that label EVERY time.  Until your child is old enough to do that, I really believe that it's not safe to leave that task in anyone else's hands, based on our experience.

[CMdeux]

 

How did it go??

[Carefulmom]

Checking in to see how the meeting went.

[Lianne]

well, the meeting went about as badly as it could have possibly gone.  I went in and told them I want a 504 plan, the principal tried to convince me that the health plan he has currently is good enough to which i said clearly it isn't since you changed the policy and I wasn't informed.  She then tries to tell me I was informed.  Um hell no, cause I scheduled a meeting the second I found out.  oh but wanna hear something funny, guess when the policy was changed, when they started allowing products with nuts into his classroom!  the end of OCTOBER!  they have been doing this for 2 months without telling me, had he had a reaction, I would have sued their asses.  Anyways, so I say no I want a 504 plan they say ok.  I said for starters there is to be no nut products in the classroom.  She looks right at me and says "i'm happy to write up the plan, but I will not write in a provision for no nut products" can you believe that?? it gets better, she had the nerve to say that if I don't like DS being excluded, under my theory the whole class would be excluded.  she must be a moron.  if the whole class doesn't have it, no one is being excluded, oh but she said, we are welcome to have DS leave the class whenever there is a treat to make sure she's safe.  Had my mother been there, i think it would have been this point that she would have jumped over the table at the woman.  Even if I was ok with him leaving the classroom, or with him having his own special treat, that's not enough.  he's 5, they're 5, kids are messy! I mentioned he had a contact reaction last year so this is why i'm concerned and i was told "oh well yeah but that's not an anaphalytic reaction" oh ok so being covered in hives doesn't matter?  being sent to the ER isn't a big deal?  sure that's not scary for 5 year old. the whole meeting just went around in circles, they kept saying they're doing what their school district policy says and what washington state law says.  Their policy states that they have to "take reasonable measures to keep him safe" and they think what their doing is enough and they don't think me asking them to keep peanuts products out is reasonable.  I even asked if they could hand them out at the end of the day as the kids are leaving, and that wasn't acceptable to them either.  i found out today that the kids eat lunch, then go to recess then wash their hands.  so i asked them if they could wash their hands on the way to recess or even use sanitzier and i was told that would be too hard to enforce.  so i said to them, ok so if we bring in a mediator, (i was told to suggest that if they wouldn't co operate) and they said that's fine I can do that, but that they wouldn't agree to stopping the food in his class.  so i said you're telling me that if you are ordered by law to stop you won't.  she said well i would have to "speak to my counsel, the school's laywers" but if they advised her to she would.  So the only way they will listen if i go all the way to force them legally.  they told me they don't think they can keep DS as safe as I expect them to, so i said are you saying my son shouldn't attend your school, and of course they backpedaled a bunch and said "well you need to decide as a parent what you want to do"
i'm so angry with them.  i didn't cry though, not til the very end when i realized how little these people care about my son's life.  I teared up as I was walking out, i left the school and then i cried.  of course i had to stop cause i still had to pick up DS but once i got home, i just cried and cried.  I feel so hopeless.  I never thought they'd refuse.  never.  apparently they felt his school was too strict and they wanted all the schools on the same page.   i'm at such a loss right now. part of me wants to pull him out of school but then what?  they have a duty to provide a safe learning environment for hima nd they're not doing that, how is that fair to him.  How dare they say other kids getting their stupid fattening cupcakes is just as important as DS's safety and ability to attend school.  they told me that i'm trying to put him in a bubble and that he could just as easily have a reaction from touching a door handle.
anyway, tonight i just sit here and cry cause i'm so so sad, but tomorrow, i have to fight and start calling anyone who will listen to help me get this fixed!

[CMdeux]

First-- 

I think that you did well for your first at-bat. 


Did you get your eligibilty SIGNED and IN WRITING?


If not-- insist on this.

We can help you to write a letter of understanding to get the ball rolling.

On that and on other things.

Firstly, you're going to include this person's BOSS in your letter, and you're also going to include the special education people at the district level.

And you're going to "explain" exactly what this tool told you in this meeting-- that some accommodations were already "off the table" so to speak, before even writing the plan.

Then include a copy of Letter to Zirkel, explaining that "reasonable" isn't the standard, and follow it with evidence from OCR which explains that they CANNOT 'refuse' necessary accommodations.

You could explain that they are CHOOSING to ENHANCE RISK in the educational environment and demand that THEY sign a statement that they understand and agree to continue taking this elevated risk, knowing what they are risking. But I would give them one more chance, first.

Here's a name that should make this administrator QUAKE with terror (so use it with caution):  Nathan Walters.

I can give you two other fatalities from your state that should really and truly strike terror into the hearts of litigation-fearful school district attorneys.


Do you have a physician to write a letter for you?  You'll need that, it sounds like.  We can help you there, too.

Honestly, there have been less auspicious beginnings.  Don't worry-- you're helping them.  Honest.  They'll get there eventually.   

[Lianne]

Oooh and I forgot to add that the district nurse told me there's something I should keep in mind.  If I push this then word will eventually get around that it is my DS's fault that no one in class can have cupcakes and that could cause problems.
I'm sure she didn't mean it but it certainly sounded like she was trying to intimidate me into worrying that DS will be blamed and/or bullied.  After the fact, I found what I wanted to say which was, so do you allow bullying in your school as well?