Gifted Issues Discussion homepage Forums Twice Exceptional Food allergy case

What I'd like to know is why schools and classrooms are party venues at all.

I thought schools were for, you know-- education.

And the "fun" argument? Yeah-- I get how veggies don't say "fun party." MY question is-- why does school need to say it??

Now put yourself in the shoes of a child that I personally know-- a HG child-- who sat in a room full of other children eating glorious bakery cupcakes... and looked at-- a whole, fresh vegetable brought in for show-and-tell, which the teacher "kindly" offered instead. Nice that he "didn't mind" enough to "ruin it" for anyone else, though, I suppose.



Honestly-- that one is a slap in the face to anyone like me whose kid will NEVER-- NEVER-- get to "enjoy" the "party" like your kids. Schools are bound by federal law to be inclusive. They are choosing to allow crap into classrooms for non-educational purposes, and then they turn parents like me into the bad guys for wanting it to STOP.

Crazy world.

As for "knowing" what they can and cannot eat-- PLEASE re-read my posts. My daughter knew that as well. She's just not lucky enough for that to be sufficient, given that as little as a few milligrams of an allergen can send her into anaphylaxis-- and has. Being around unsafe food IS, in and of itself, very dangerous for her. The single most irritating and ignorant question of all time has to be; "why don't you teach her what she can't eat, then?" A close second is the incredibly foolish assertion that she could eat whatever she liked if we got her one of "those pen things."

News flash: some kids are just plain more TRUSTING than others-- and not even PG kids have the judgment of adults when they are 2 or 3 years old. Believe me, we know how dangerous their assumptions can be at that age, smart as they are. My daughter has also carried her own autoinjectors (Yes, plural, and always a mix of lot numbers) since she was two years old. She wears them EVERYWHERE, and they hang in the same location in our home.

So while I'm glad that cupcakes really "make the day" for some kids-- I'll be honest here and suggest, with all due respect, that maybe they belong somewhere other than classrooms that have food-allergic children in them. I think that the statistics there are pretty compelling in suggesting that most preK through 3 classrooms DO have at least one child like that in them. While far fewer than 5% of those children is like my daughter, some of them are-- and the larger issue is why on earth it would ever be okay to exclude ONE child systematically like that all year long, even if it didn't make that child feel inherently unsafe in the process.

School attendance is compulsory-- as in the case that Elizabeth posted, and schools can use this to leverage parents to accept risks for their children in our absence that we would find UNTHINKABLE if our kids were in OUR care instead. That, deep down, was the breaking point for me with schools, public or private. They wanted ME to be okay with THEM taking risks with my child's safety that I found horrifying-- which led me to believe that fundamentally, they were too stupid to take good care of her, or they wouldn't be willing to do them, either.

Food incentives are also another area which is fundamentally different when you are a person with life threatening food allergy.


Oh.. yay.... a "pizza party." At the pizza place that I can't even go into. Wow, I'll be sure and work extra hard for THAT treat for the class...

Oh... yay... if I read more books, I could get Ice Cream certificates!! Um-- except, kind of not that good an "incentive" since I don't want them, because then I'll just have to explain why I'm not all excited about it, and well, yet another opportunity for my food allergies to ruin everything for me. Great. I'm not going to turn my reading logs in this week.

I'm reminded of a classmate that I knew as a child-- who was certainly MG, maybe brighter than that. She (I later learned) had juvenile arthritis that made recess a SERIOUS bummer. She used to routinely act out so that she'd be held in at recess-- and was quite successful at keeping her disability hidden when she was experiencing a flare. Reading a book was better than just sitting outside and watching the rest of us do things that she found too painful (or was forbidden from doing).


This stuff matters. A lot.

I agree. It is a relief to me here that in middle school the whole enterprise goes away, and school is school.

HK, you've written very powerfully here, and I agree with what you say. Any chance you can repost somewhere where lots of teachers and school admins will re-read? People NEED this perspective in order to understand.

This is a favorite theme of mine...along with the idea that there are people with whom you can have a genuine relationship (not artificial, nor would I call it shallow), but within certain limits. And that's okay. Intense people may naturally want the same level of intensity to be reciprocated in their relationships, but not everyone is there, and one can learn to accept and appreciate each relationship for whatever the other person is able to invest into it, eyes open, and with realistic boundaries for self-protection.

I guess it's the understanding that everyone has flaws, but that that should not prevent us from loving them (or them from loving us). I prefer to think of it as compassion and mercy--which is often learned through tragedy, but can be learned through grace as well.

ITA.

Birthday parties in the classroom? What?!

I have. For many years. Also-- if you like what I've written, you'll LOVE Bettina at The Lunch Tray. She covers a lot of the same ground.

In fact, her Manifesto is a thing of profound beauty.


Mostly, I've spent those years helping other parents to get what they (and their kids) need out of schools, using resources that most parents have the ability to muster.

It is true that things have come a long way since my DD was a four year old that a teacher told me to NEVER put into a classroom in our city. Our district had not one school nurse, our state had no laws permitting my child to keep epinephrine unlocked and near her in a classroom, and the district served her allergens at every meal, in every school in the district. At least she could carry epinephrine now-- but it's clear why only half of that assertion about never placing her into a Kindy classroom was about being gifted.

I'm proud that reporting a food allergy now means that our virtual school (nationally) will evaluate a student under Section 504. That in and of itself is huge-- because until my DD, they didn't see why that was necessary. I have helped them to hammer out and craft a national protocol-- and slowly but surely built in the mechanisms to fulfill elements of those 504 plans. We did that. DD's high ability made them want to do it so that they could use her as a PR show-pony. We did allow that arrangement, until DD objected.

Even in a virtual school, that 504 plan is all that stands between her and a second-class educational experience (and-- as noted in the Dear Teacher thread, sometimes not even then).

Just this year, during a teacher contact day, the ONE event local to us was specifically labeled "This trip unsuitable for nut-allergic students." Seriously. So it isn't that there is perfect inclusion even here. There has been significant erosion over the past two years since I quit being rather pushy during annual 504 meetings. {sigh}


I've spent my time helping other parents navigate the system (or decide when to walk away)... and I've made what changes I could where I could. It's a journey. What has made a difference, I think, is that I don't fear attorneys. I know that the law is generally on the side of kids with food allergies (well, it is when the impairment is so clear, and when your specialist is a high roller and agrees with you, anyway). So the school's attorneys are actually on MY team.

I should also point out that I know (somewhat) the parent in the case posted. I help to run a support group for parents, and a depressing number of them are like them. I say depressing because the amount of energy that has gone into things is positively Herculean, and there are still places where schools are so malevolent and backwards about kids' safety. It's depressing in much the same way that fighting for HG+ children to get appropriate education is depressing.

It feels like no progress is ever really made for long.

I have incredible respect for the parents who have the intestinal fortitude to go through with due process rather than just "walking away" (homeschooling). School districts have, for far too long, been able to BULLY or intimidate families like mine, since they all know that they ultimately hold the trump card of safety. Most parents ultimately do what we did-- they fold and homeschool, no matter what that winds up costing them.

I'm awed-- and humbled-- by the will, unselfishness, and dedication of parents like those in the link posted at the start of this thread.

My perspective here is what informed my perspective about Section 504 evaluation-- and why you never, BUT NEVER-- no, really never-- tip your hand as to likely accommodations PRIOR to a finding of eligibility.

School districts LOVE to find out what you're after so that they can deny eligibility. Once you're not a QID, they don't have to do anything they won't do for ANY student.

Cynical? Oh you bet-- but look at the court case that started this thread. That's not unusual. What's unusual is that the parents fought back.

As sort of an aside, I have an experience to share. I chaperoned my son's school trip to the zoo recently. First time I ever chaperoned. But it was an unnerving experience. So, the teacher gets the kids' epi-pens from the nurse's office on the trips and is suppose to give it to the mom who is in charge of my son's small group. Teacher forgot. She emailed me over two hours into the trip that she had forgotten to give me DS's epi-pen and if we wanted to meet up somewhere we could get it to me. But even though I have an iPhone, I wasn't checking my email on it because I was trying not to lose kids. And, of course, I had an epi-pen b/c I always have one in my purse and DS was wearing his epi-pen in his epi-belt in which he carries other allergy meds. I always put his epi-pen belt on him for field trips b/c I am afraid of this sort of thing - I am afraid the epi-pen will be too far if something were to happen, I am afraid the chaperones won't believe/know he is having a reaction, etc. Now what if I had not been chaperoning? The group leader of my son's group would have had no epi-pen. Fortunately, like I said, I put my son's epi-belt on him for these things. But I am still unnerved because my son has never given himself the pen (I have always given it to him during reactions). Also, the reactions are scary I imagine him actually stopping while having a reaction and just being left by his group. He just had a reaction in January in the supermarket and it was so bad so fast and he was going into shock so it was hard for him to think straight. I don't know. How can I make the school field trips safer? There is a child with diabetes and his father goes on every trip - maybe I should start doing the same (you gave to be "picked" to chaperone but I could insist on going due to the disability like he does I think). I don't know made me nervous. Would like to hear HK's thoughts and others with allergic kids on this. Examples of things to put in his iep/504 to help with this?

When we had an IEP meeting for DS5.10 last year to discuss his progress and accommodations for Kindergarten, the SCHOOL NURSE questioned the need to carry epipen on him at all times (our request) given the fact that we had never actually had to use the epi. I made it very clear to her that it wasn't because his allergy wasn't severe but because of how well we've managed his allergies! (The one time epi would had come in handy was when he first reacted and we did not have epi on hand yet). But seeing how clueless a HEALTH PROFESSIONAL was, I realized this was a battle we could never win.
Long story short, I created a very strong emergency health care plan, stronger than any other parent at school, but we still only managed one semester of Kinder and then pulled him out to homeschool. There had been too many times when things could had gone wrong and I didn't want to take any more risks. Life is so much easier now that we don't have to think about school vs. allergies!