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Posted on: Tue, 08/14/2007 - 1:32pm
Corvallis Mom's picture
Joined: 05/22/2001 - 09:00

Maybe if my child were only PA, or only ingestion-sensitive.... or only sensitive enough to respond to fairly obvious quantities of peanut, I would feel the same way.... that my child's allergy (in her case MFA) didn't rise to the level of 'disability.' I'll never know, I guess. She doesn't have a 'choice' about whether or not to participate.
Not every FA child is entitled to disability protections. There is a reason.
I would also say that it is pretty common of ANY disability for families affected to dislike the "D-word." (I say this w/r to trisomy, mental illness, and diabetes, BTW.) It isn't a definition of who you are.
But the fact is that my child's entire lifestyle is markedly different from her unaffected peers-- outside of school, that is pretty much inevitable (and also [i]okay...[/i]) Heck, it's pretty different from many people who post [i]here[/i] that don't have kids as sensitive.
She doesn't experience life the same way. And much of the time, that's fine. We are all unique.
Settings of her peers where she is set entirely apart from everyone else present by virtue of her allergy are NOT OKAY. We do not 'opt' for those situations IRL.... nor, I suspect, would anyone else here, at least not regularly.
How would any of us feel about an office party we [i]had to attend[/i] in which only foods you could not have were served? What if this 'party' was really just 'eating dangerous food while you sit there'? What if you got to eat your regular lunch while everyone else raved over the special food and asked what you were eating and why you didn't want any of the yummy stuff? What would you do? Bring something so awesome that you didn't care? I'd probably call in sick.
That's the kind of 'smoothing over' that I am beginning to question. It was wrong of me to gracefully acquiesce when I was told that this strings 'party' would really just be about cookies and stuff and could we please just skip class that day? Wrong. It made it easier for the class and the teacher to pretend that it was okay to [i]plan[/i] to exclude my child. They didn't have to see her tears because she wasn't there.
My analogy about the civil rights of African Americans is valid, I think.... if only because a fair number of [i]THEM[/i] also thought that it was just 'asking for trouble' to want true inclusion. It wasn't so bad to use a colored restroom and drinking fountain, really... and heaven knows most Caucasian people had no idea what the problem was. Hey-- I've known people whose lives are relatively unchanged by it all-- because [i]they grew up fortunate enough to 'pass.'[/i] (This was a college friend's mother, BTW... I had no idea my friend was biracial for the first year I knew her.)
And after all, they all had access to schools, sports, and even an entire college system of their own. What exactly did they think 'equality' meant?? (Being facetious here-- I understand it perfectly well. But my peers of fifty years ago would NOT have.)
If you don't run into this problem, or have it affect you, then with all due respect, is it possible that your situation is such that you 'can [i]pass?[/i]' (I mean this as a general thought-provoking question, BTW, not directed at anyone in particular.) Or perhaps that your community, (like some in the 60s) is already 'integrated'? Who blazed the cleared trail that you walk?
I can't make my daughter's allergies that unobtrusive in her life and ours. She'd love to be able to eat in a restaurant, or even just not wear a medicalert bracelet and carry around a bag full of thermally-sensitive medications. She'd love to get on an airplane and travel the world. It isn't going to happen for her.
Nobody is saying that our kids (or anyone else) should have a fully 'level' playing field of life. Nobody ever does-- but we are all entitled to human dignity.
Would we tolerate any other officially sanctioned activity that took any involuntary characteristic of just one child in a group and made it the basis of differentiation and isolation? I wouldn't-- it is unecessary and cruel.
She is very good at pretending it doesn't matter. But I have been very surprised at what I have heard her say since I stopped trying to 'shush' her when she complained.
Equal rights are not special rights. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Tue, 08/14/2007 - 1:55pm
Sarahb's picture
Joined: 01/22/2007 - 09:00

CM - I totally agree with the "passing" attitude and see that connection...but still find the comparison weak.
And I have no problem with the Disabled label. It is what it is.
This conversation has made think about things in a different way. I'm still not sure it's worth the battle in the scheme of things...but maybe it is.

Posted on: Tue, 08/14/2007 - 2:00pm
Anonymous's picture
Anonymous (not verified)

Corvallis Mom, I agree with you again. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Sarahb, please note, there was a ; between the first comment re "back of the bus" (referring to Corvallis Mom's post) and *my* take on visible and hidden physical disabilties.
Do I actually consider my son disabled? C'mon, y'all know me here. You know the ?'s I have asked. Do I see PA stamped on his head. NO. But I do see that Epi-Belt around his waist and try to make darn sure it's on there when he's flying in and out.
Whether I consider my son *disabled* or not I don't think is *my* point. It is that yes, he is. He has a medical condition whereby, albeit hidden, he could DIE if he comes into contact with such and such.
kelly01, I'm really trying to understand your points, but as usual, I suspect, we're at polar opposites on this one and that's okay.
Are you saying that by making a stance against no food that shouldn't be allowed in the classroom in the first place (the food that has not been okayed), we're placing even more importance on the food part of school that I think all of us hate to begin with?
If it's on a legal written document (a 504) that certain food cannot enter a classroom then doesn't that document (or shouldn't that document) supersede what particular members of the community want?
As I posted in another post, we routinely get letters at the start of each school year, that there is a PA child in the classroom and that there are to be no peanut products brought. I think (not speaking on behalf of classes my son has been in), for the most part, people comply.
Or is comply a *bad* word?
Jeez, get me going on this and that September Fun Fair at the so-called "reduce the risk" school might be a-changin' this year. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]
Examples just from the Fun Fair - when you don't work with the school to make it "all inclusive" if you will (which I have not done with this school - and will reiterate - I did do successfully with my son's first school and he could attend the Fun Fair safely):-
* candied apples with peanuts on top
* cake sale
* baked goods sale
* contest where you can win a giant basket of unsafe chocolate
* separate vendors set-up in one room selling heaven knows what food wise.
And we attend. And I am ashamed of myself.
I tell my guy to get his hot dog or hamburger and that's it. Maybe buy the raffle ticket but probably not because I wouldn't even give unsafe chocolate to someone else.
No, I liked the Fun Fair (and myself) a whole lot better when it included my son's ability to eat safely there.
Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
There but for the Grace of God, go I.

Posted on: Tue, 08/14/2007 - 2:09pm
Sarahb's picture
Joined: 01/22/2007 - 09:00

ATM - THANK YOU! I was really befuddled...and didn't think you really could have meant that..but I read it 6 times and was just...well befuddled.
I feel better now. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Tue, 08/14/2007 - 2:11pm
Sarahb's picture
Joined: 01/22/2007 - 09:00

Ok....last post of the night...
what of the MFA kid in this conversation? The one who can't have wheat, dairy, soy, egg, peanuts, etc.?

Posted on: Tue, 08/14/2007 - 2:37pm
Corvallis Mom's picture
Joined: 05/22/2001 - 09:00

An excellent question.
Inclusion means inclusion. That's what I think.
So if that means that I can't pass out latex balloons because of Janey's allergy, and Timmy can't eat wheat cupcakes, well, then, why don't we plan [i]something ELSE entirely??[/i] Oh? Juan is a Jehovah's Witness, you say? Fine. Here is a book for the classroom in my child's name. Can my child bring this and have it read during story time? We'll save 'happy birthday' for tonight at home.
The thing this thread has made me consider is this:
[i]I need to consider carefully why I continue to ENABLE this kind of thing. Is it:
a. Because I'm comfortable with the status quo-- that I truly don't see anything 'wrong' about it?
b. Because I don't see what I can do to change it or fear the conflict that I know it will cause to try?
I am ashamed to admit that it is the latter. I've given up too many times, thinking, "This isn't so bad. At least.....{fill in the blank}." I've tried so many times to convince my daughter (and myself) that it was "fine" that events were "almost" accessible for her. Ugh.
Thank you, gvmom, for making my DH and I question our own personal 'comfort zone' that finds activism-based advocacy fairly 'radical' and even 'distasteful.'
I think that I owe my daughter better than to tell her that she should be 'happy enough' with the back of the bus.

Posted on: Tue, 08/14/2007 - 3:08pm
gvmom's picture
Joined: 08/24/2005 - 09:00

CM, I can't tell you how much your posts have meant today... and your last... tonight of all nights is just what I needed.
Things maybe be hitting the fan..... in a big way. And in a not good way. I will definitely be tested in my convictions if the end of this day, and the news it brought me, is indication.
[b]Inclusion means inclusion. That's what I think.[/b]
<<>> to all of you tonight.

Posted on: Tue, 08/14/2007 - 3:28pm
McCobbre's picture
Joined: 04/16/2005 - 09:00

Let me say that I am having to post via phone (I'm traveling) so I will probably have a lot of typos and I can't quote things. Gvmom on p. 3 you made referencee to your your younger son not knowing better (implying than feeling excluded w/o treats) and it would not faze your older son. But isn't the expected outcome of this that they will NOT feel excluded precisely because they will have the same safe store bought labled treats as everyonr else? Pls correct me if I'm wrong.

Posted on: Tue, 08/14/2007 - 5:38pm
Nutternomore's picture
Joined: 08/02/2002 - 09:00

Well, I'm really late to this topic, but will briefly share my thoughts. Don't mean to come across as overly blunt...it's just a function of it being late and I'm short on time....
I personally would not go the passive-aggressive route for the reasons most have mentioned before regarding the impact on your kids (more about that later on). I think your initial thoughts about how people would react is really just wishful thinking. This is the community which allows all the kids to eat on the ground year-end like they are in a 3rd world country, remember????? Everything you've shared in your posts here about your school community (as well as other info) doesn't give me [i]any[/i] sense that any moral outrage would be expressed by school administration or other parents. I think only your kids get hurt.
Here's the paradigm in which we operate when explaining our classroom accommodations to DS with respect to food. Our accommodations are nearly the same - no food in classroom unless peanut and tree nut free. But DS has the option to partake from his "treat box" in order to provide a safe alternative when an acceptable treat is introduced into the classroom and he desires inclusiveness.
It's not about "back of the bus" for us; moral stands don't mean much if it means that DS's psyche is damaged as a result. For us....it's about always making the "safe" food choice when presented with a situation involving food [b]without exception[/b]. [i]This is a crucial lesson involving restraint and choice which he will depend upon to safely guide him through life, regardless of peer pressure, or any other influences.[/i]
A related notion we have discussed, and DS employs, is for him to decide whether he wants anything. There are times when he simply decides that he isn't interested, and he is OK w/that.
I suppose part of it is that we tried hard to instill a good sense of awareness about healthy snacking for DS (and now DD) at a very early age. In K, while other kids started bring all the sugar laden cr*p for snacks, our kids brought fresh apple slices [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] So, as a consequence, he doesn't always feel like he's missing out...he actually thinks (sometimes) that other kids are making bad food choices! So I guess the child's perspective can also weigh into this issue to a large degree...
That's not to say that he doesn't love a good chocolate brownie like the next kid...but he'd prefer to have it at home, with the comfort of knowing that DW made it and it's safe.
I've ranted plenty in the past that food has no place in the classroom, period. But schools are institutions like the QE2, they don't spin on a dime...it takes a long time to steer that ship in a different direction. Frankly, since we are in California (thinking about other recent state legislation passed that is beginning to attack getting junk food out of schools), the quickest path to deal with killing the cupcakes might be via legislation...with increased measures tied to wellness to curtail food consumption during the school day even more...
Getting back to schools and 504's...that's where I really think that pragmatism is what drives our actions in dealing with violations and the like. I'm glad to hear that your "backbone" transplant this past spring was successful [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] It is great that you sound much more willing to engage the school if they don't live up to the 504 accommodations going forward.
However, the realities of 504 enforcement are that you have to use a variety of tools in the arsenal if you want to be successful - Gail's velvet hammer, give 'n' take, good documentation with direct follow-up (not letting them off the hook), and even positive reinforcement when they get something right. While it's nice to have a 504, let's remember that we don't have a Supreme Court ruling like Brown vs. Board of Education or similar watershed case which creates the kind of sea change that we would all surely like to see in the school system. Yes, OCR can be helpful to a point. But, practically speaking, you're not going to file an OCR complaint due to little Johnny not receiving a cupcake as a LRE issue and expect any sort of meaningful action on the part of OCR. You know this...
So, putting all the wishful thinking aside, I think you can shield your kids from the possibility of feeling excluded, and use the accommodation as a teachable moment about the importance of making safe choices [b]every time[/b]. Right now, you assist in that process....someday, they will need to make those choices on their own. In the meantime, you can be loaded for bear...the 1st whiff of a 504 violation is when you start documenting and getting in their face in a very direct and prompt (non passive-agressive) manner. Something tells me they will notice the difference from last year.
Urgh...I'm not at my most coherent...hope this makes sufficient sense.
[This message has been edited by Nutternomore (edited August 15, 2007).]

Posted on: Tue, 08/14/2007 - 10:45pm
anonymous's picture
Joined: 05/28/2009 - 16:42

Quote:Originally posted by Corvallis Mom:
[b]Inclusion means inclusion. That's what I think.
So if that means that I can't pass out latex balloons because of Janey's allergy, and Timmy can't eat wheat cupcakes, well, then, why don't we plan [i]something ELSE entirely??[/i] Oh? Juan is a Jehovah's Witness, you say? Fine. Here is a book for the classroom in my child's name. Can my child bring this and have it read during story time? We'll save 'happy birthday' for tonight at home.
I also think "inclusion means inclusion" all day every day. We don't keep the classroom peanut free/nut free only on the days child "x" is present. Way to breed resentment, right? (and trust me, I've had to deal with that in the past.....teachers start asking if my child *is* going to be present on certain days. They almost had me believing we were imposing by showing up.....)


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