More on Exclusion ... (notnutty) <18-page thread reconstruct in progress>

[ajasfolks2]

Original Thread:  http://allergy.hyperboards.com/action/view_topic/topic_id/13611



<THIS is an 18-page thread over at the old place -- am through page *13* or so -- . . . PLEASE bear with me as I work to get it all up and on here!>

notnutty

I am in deep thought over the past few days about something. 

I came across some information from someone who volunteers at my DS's school.  She was in a 2nd grade classroom.  A student was handing out cupcakes for a birthday treat. 

The little girl came across a little boy who said, "I can't have one of those."  All of the students in the class were asking, "Why can't ____ ever eat birthday treats."  The little boy said, "I'm allergic to dairy."

The teacher just said, "__________ just can't have any treats and he has to get used to not eating things like everyone else." 


She handed the child a sucker to eat.


For some reason I am just so very sad about this.  I know many of our children get excluded all the time.  There are countless discussion on this board about this subject.


I think I am just sad that this child sat at his desk and accepted this behavior.  This is all the better he is going to get.

Our school adopted a LTA policy in the fall after countless hours I spent on advocating for my DS.  Along with another parent, we worked really hard to put some policies in place.  Clearly, those policies are not really being followed.  A bunch of lip service.

The policies do not prohibit birthday treats, but strongly recommends that if a child with LTFA is in the classroom, the parents are encouraged to bring in a non-food item.


Just thinking about this little boy and this situation and wishing I could do more to make his life better.  Why can't school administrators and teachers realize that what they are doing is wrong?  Why is it okay to exclude our children when it would be unheard of to do the same for other disabilities?


Just in deep thought about this and wishing I could do more to help those children who do not have a strong voice.....

Susan

The little girl came across a little boy who said, "I can't have one of those."  All of the students in the class were asking, "Why can't ____ ever eat birthday treats."  The little boy said, "I'm allergic to dairy."

The teacher just said, "__________ just can't have any treats and he has to get used to not eating things like everyone else." 


She handed the child a sucker to eat.

Wow, way to teach compassion!  What does she think Christmas is all about? 

Teacher needs a copy of
http://www.youtube.com/watch?v=mA69kvBTzAE&feature=related

hedghog

That little boy in the wheelchair can't get into the library. He's just going to have to get used to not going places like everyone else.

Same statement, different disability. Why does is sound so much more unacceptable this way, though?

hedgehog

I actually encountered the opposite situation yesterday.  The cafeteria lady in our school (love her, love her, LOVE HER     ), has been trying to find something to give DS and other allergy kids on "free cookie Friday."  (Not a weekly thing, once or twice a month.)  For a while, she was letting DS have a bag of chips, but didn't feel right about him not getting a cookie.  She got in a delivery of gluten-free stuff, including cookie dough that said it was made in a "nut-free environment" in big letters.  DS liked it, but it was so expensive she really wants to have that just for the kids who need wheat/gluten-free.  So I helped her get some safe cookies (I went out to get it, the school paid).  She was so happy!  She was saying over and over how it just isn't right that allergy kids can't have what everyone else gets.  If it's free cookie Friday, everyone should be able to get a cookie.  I told her how wonderful she is, that not everyone thinks like that.  She seemed to have trouble understanding that some people just don't care.

Did I mention how much I love her?  I'm going to be so sad when DS goes to middle school next year.

ajasfolks2

Just thinking about this little boy and this situation and wishing I could do more to make his life better.  Why can't school administrators and teachers realize that what they are doing is wrong?  Why is it okay to exclude our children when it would be unheard of to do the same for other disabilities?

Because we allow it.  I say "we" as in the collective, eventhough there are some who will NOT allow it where they have some measure of control.

Everytime this blatant discrimination is allowed to be acceptable --  by just giving a pass or by any other varying degrees of "allowance" (up to and including the safe treats box) -- then it reinforces that this discrimination is JUST FINE.

The fact that the proposed LTFA legislation at federal level is to be "voluntary" gives it a pass as well. 

We HAVE the laws in place to protect and uphold the LTFA child's right to FULL INCLUSION in the ADA and Section 504 of Rehab Act.

OCR nationwide needs to step up and appropriately handle the complaints.

LTFA parents nationwide (worldwide) need to be strong enough to speak out and speak strongly.  Every time.

What does it teach our children that we would be accepting of discrimination against them in the public schools?

(Rosa Parks analogy.)  Why is it OK for the child to sometimes NOT be allowed "on the bus" so to speak?  And why is it acceptable for the child to be allowed to ride only in the least desireable seats on the bus, but still be allowed to "tag along"?


Thanks, notnutty, for posting this today.

This is National Inclusive Schools week:  except for those with LTFA or ______ (other protected group struggling with similar discrimination issues; fill in the blank).

Exclusion as a supposed means of INclusion is illegal and WRONG.


Keep asking WHY.

Keep working for positive change.

Refuse to give up the seat on the bus.

~e

ETA -- Since we cannot seem to get FAAN to advocate in this manner, perhaps we should seek hlep elsewhere?  What abouut INclusive Schools org?
http://www.inclusiveschools.org/

ajasfolks2

Again, unending gratitude to gvmom, original author of "I am not sending in safe treats" thread once upon a time:  August 11, 2007.

Please PM if you'd like link to that original discussion still readable at old place.

Unknown

Yes, once again thank you for that thread GVMOM!

There haven't been many things on the internet that have changed my life, but that thread did. It gave me a whole new outlook, and I do feel that our lives were fundamentally changed for the better from it.

Thank you, thank you, thank you!!!

Guest "Rosa Parks"

There's plenty of room on the bus, come find a seat.

Firebird/ajasfolks2

At the time I was arrested I had no idea it would turn into this. It was just a day like any other day. The only thing that made it significant was that the masses of the people joined in.
  ~ Rosa Parks


Let the MASSES begin.

~e

ETA --  quote above from site:
http://www.brainyquote.com/quotes/authors/r/rosa_parks.html

PS -- Intentionally posted as Committee Member for this one.   

notnutty

I would love to file a complaint...again...but I simply cannot in this situation because the person who heard this dialogue is not supposed to share this information with others.  Confidentiality as to what takes place in the classroom.

For some reason I am deeply saddened today about this incident.  My DS is excluded occasionally.  Not as frequently as he used to be.  However, just last week when Mr. Rootbeer Float King (also known as Mr. Principal) decided to have a rootbeer float celebration for meeting a fund raising goal, I received that panicked phone call from DS's classroom teacher.

She truly does not understand why there has to be so much food.  She "gets" it to a certain degree.  My DS was given the option of a popsicle that the school purchased for "safe" treats.  My DS said, "I don't care mom, it's okay."  It just makes me crazy that he is okay with being excluded.  Why is it okay.  Why do our children have to settle?

I know life is not fair and the nature of LTFA means exclusion in certain settings.  BUT...in school...where a child is trying to learn and feel part of the group (I am thinking self-esteem), why does this have to happen with so little regard to the child's feelings?  I simply don't understand it. 

My heart aches thinking about my DS...your child...any child with LTFA sitting at their desk with a dum dum while everyone else enjoys a bakery cupcake. Looking at the situation through a child's eyes. 

Yes...I agree the thread about not sending in safe treats opened my eyes to a whole new way of thinking.

This incident is stirring something in me to do something...again.

booandbrimom

The teacher just said, "__________ just can't have any treats and he has to get used to not eating things like everyone else." 


She handed the child a sucker to eat.

I heard this from every teacher, every year. Insisting that my child be included = coddling him.

My son saw the irony in jr. high of studying the short story: The Ones Who Walk Away.

I wish I could have changed things for him. I think people underestimate how different things were in school even 10 years ago. Advocacy has made a difference. I think from here, though, it's going to take lawsuits to really change the environment.

If you don't believe me, go back and read the poll I posted about banning food from classrooms. Half of this community was not willing to do that to support my milk-allergic child. Why would we expect the population at large to support this?

Ryansmom

It really depends on the manner and situation in which it was said. Just the words don't really bother me. If the parents always provide an alternative snack, then it's not a big deal. Yes, child X will have to learn to deal with it. I didn't find it offensive because that's the truth.

I've been on the other side. Ryan came home one day three years ago somewhat excited. A well-meaning sub teacher told him at lunch that some day he would probably grow out of his food allergy. I quickly put an end to that thought and told him it was ignorant for her to make a statement like that not knowing his medical history, nor an in-depth knowledge of food allergies. I had to tell him he's in this for life. Barring a miracle, he's not going to grow out of it. We can, however, pray for medical advances.

I've already told his teachers when they feel sorry for him, "This is our life. This is his life. He has to deal with this for the rest of his life and sometimes he will miss out on things. But we always have an alternative. If it's not in school or he/I forget to provide it, he can tell me to get something special for him at home." And I always do.

So in the end, it's really no big deal that those words were used IF decent alternatives that the child likes are available. Did he really like having a sucker? Maybe he did.

I just had a conversation with the Home Ec (cooking) teacher for his last block of the school year. She asked if he would be able to eat anything. My answer was no. I just can't vouch for pans, utensils, etc. Then she said, "Well he can have smoothies, right?" I said no. You never know if someone was making nut butters in the blenders. I told her he will never eat something made in class. BUT...he is always given an alternative. I am open to bringing in my professional blender with the same ingredients so he can actually have exactly what they are making, only with ingredients that I'm 99% sure have not come in contact with peanuts and all produce thoroughly washed by me.

Arkadia

The teacher just said, "__________ just can't have any treats and he has to get used to not eating things like everyone else." 

She handed the child a sucker to eat.

I heard this from every teacher, every year. Insisting that my child be included = coddling him.

My son saw the irony in jr. high of studying the short story:
The Ones Who Walk Away.

I wish I could have changed things for him. I think people underestimate how different things were in school even 10 years ago. Advocacy has made a difference. I think from here, though, it's going to take lawsuits to really change the environment.

If you don't believe me, go back and read the poll I posted about banning food from classrooms. Half of this community was not willing to do that to support my milk-allergic child. Why would we expect the population at large to support this?

Who needs to worry about video games and the media desensitizing our children when we have teachers like that to thank?

Ryansmom

I think some of it has to do with presentation.  It's a tough call.  If we weren't in the classroom, we weren't there to hear the tone of voice, inflection used, etc.  A bumbled response from an otherwise fine teacher?  It could be.  It's easy to go on the attack when we just hear about words verbatim as in a dialogue in black and white.  If we don't see the shades of grey, the dialogue can indeed be construed as negative. 

I'm simply drawing upon my own experience thinking about Ryan's 2nd grade teacher.  If she said that, it wouldn't bother me.  Well, it wouldn't bother me if it didn't bother my son.  And also, some kids are resilient, some are not.    Things that bother us may have not bother kids at all. 

And what kind of sucker was it?  A caramel apple one?  We don't know.  'Cuz I'd take a caramel apple sucker over a cupcake any day of the week.

ETA...things that I thought were a big deal ended up being nothing for Ryan.  Go figure.

booandbrimom

It really depends on the manner and situation in which it was said.  Just the words don't really bother me.  If the parents always provide an alternative snack, then it's not a big deal.  Yes, child X will have to learn to deal with it.  I didn't find it offensive because that's the truth.   

Here's the bottom line: SCHOOL IS FOR EDUCATION. Food is generally superfluous to education. It's against the law to discriminate against children and all children are entitled to equal access to learning opportunities. If the food is needed for the educational experience, make it equal. If it's not, take it out.

It really should not matter if it's o.k. with the child. The child will, of course, say it's o.k. with him. He doesn't want to be the cause of the entire class missing out on the treat. He's used to being excluded again and again. But he shouldn't be excluded at school. School is different than parties and restaurants.

Parents should not have to provide an alternative snack every time. I did this - it's exhausting, it's expensive, it's time-consuming and it's wrong. I did it because it was less of a hassle than fighting. I did it because I didn't have the money to sue, and people already saw the small accommodations I asked for as over the top. I did it because I was aware that even my own allergy community did not fully support me. But I'm really bitter about it now.

People like to justify this situation. They say "well, perhaps this kid likes a sucker as much as the delicious cupcakes the rest of the class are having. Perhaps the child has gotten used to the situation. Perhaps the child wouldn't even appreciate the cupcakes if we went to all the trouble to provide them. Perhaps it's better to 'toughen up' the kid so he'll be able to deal with life." It's necessary to say those things in order to let the kid eat the sucker while he watches everyone else eat the cupcake. How else do you watch a child be excluded, time and again, and not let it get to you?

Go read the story I posted. It's chilling when you think about it in the context of inclusion and food allergies.

[ajasfolks2]

Continued, pg 2

my3guys

Boo, what story did you post?

CMdeux

I agree.

My child, even though she has never experienced what it is like to sit in a classroom surrounded by treats she cannot have, had no difficulty at all articulating VERY eruditely what the Langston Hughes poem "The Merry Go Round" was all about.  It moved her unto tears.  She knew very VISCERALLY what that sensation was like.

This is a (seemingly) white, upper-middle class child of privilege.

How could she, at just six years old, be so BRUTALLY aware of what that feeling was like, hmm?  Since she hadn't ever experienced it in a classroom...

Real life is a hard enough task master.  No need to add to that with egregious abuses during schooling that is supposed to be inclusive to start with.

That's no different than saying that since racial and gender stereotypes persist, that therefore, we should do nothing to curb civil rights abuses toward students in those venues, either.  Which is perfectly ridiculous, of course.

  Nobody much seems  to think that minority children should "just learn that this is how life is going to be" for them.   

McCobbre

It really depends on the manner and situation in which it was said.  Just the words don't really bother me.  If the parents always provide an alternative snack, then it's not a big deal.  Yes, child X will have to learn to deal with it.  I didn't find it offensive because that's the truth.

I might be.  But it's not the teacher's place to decide. The teacher has no business saying this, determining what he needs in order to live with his FA, bestowing such wisdom.  Who is she to do that?

Just as it was not this teacher's place to determine what your DS needed to hear about the future of his allergy:

I've been on the other side.  Ryan came home one day three years ago somewhat excited.  A well-meaning sub teacher told him at lunch that some day he would probably grow out of his food allergy.  I quickly put an end to that thought and told him it was ignorant for her to make a statement like that not knowing his medical history, nor an in-depth knowledge of food allergies.  I had to tell him he's in this for life.  Barring a miracle, he's not going to grow out of it.  We can, however, pray for medical advances.

McCobbre

We have principals with such interesting names represented on this board: Mr. Peanut and Mr. Rootbeer Float King.

:rotf:

Will delete if needed, but had to laugh!!

booandbrimom

Boo, what story did you post?

The Ones Who Walk Away from Omelas

"To exchange all the goodness and grace of every life in Omelas for that single, small improvement: to throw away the happiness of thousands for the chance of happiness of one: that would be to let guilt within the walls indeed."

cya

We have principals with such interesting names represented on this board: Mr. Peanut and Mr. Rootbeer Float King.

:rotf:

Will delete if needed, but had to laugh!!

Mine is nicknamed Vaccum Cleaner, because he sweeps (vaccums) everything under the rug. And I didn't even make up the name...some parents with bullying issues did, several years ago.

I think someone here had another name for my principal. I forgot the name (CM? Ajas?). He's the security freak that doesn't let parents in the school.

cya

Agree with all Boo said above.

booandbrimom

And also, some kids are resilient, some are not. Things that bother us may have not bother kids at all.

Frankly, I think this is pernicious thinking. Inclusion does not always equal coddling. The emotions of the child should not affect the justice of the situation.

My son sucked it up (excuse the pun). Yes, he's strong as a result and no, he doesn't feel sorry for himself. But, he would be equally strong, I believe, if he had the experience of being excluded at the...oh, roughly THOUSAND events outside of school where he couldn't eat food and was included in his classroom.

Why should children have to be excluded? This isn't that hard. If the food is important, take the time and make the effort for it to be edible by all. If it's not, get it out of the classroom. Why should our kids be put in the position to perpetually accept the suckers? Why should schools habitually exclude children? And why do more people not object to this?

I've told this story before, but it bears repeating. When I entered jr. high, there was a deaf child in my grade. As a result, all children were required to learn sign language. I have no idea if the principal based his decision on law or simple compassion, but we all learned it. We delighted in trying out our skills with this boy. As a result, he was included in lunch, recess conversations, between class banter - the parts of jr. high that are just as important as class learning.

Would he be accommodated in that way in the adult world? Nope. Did that matter to the principal? Nope. I wish more principals would think like this.

cya

I believe FAAN supports Nut Free Zones.

And bans only for preschool age.

booandbrimom

I believe FAAN supports Nut Free Zones.

And bans only for preschool age.

FAAN knows what can be sold. To actually sell total inclusion for MFA kids is next to impossible.

Again...half of this community won't support it because it essentially means taking food out of the classroom. My guess is that only 10% of the regular community would. IMO, advocacy won't work.

If I were doing it over, I would sue for equal treatment. The money and hassle would have been equal to what I spent with the schools over 10 years. My husband and I both worked part-time during the early years just to deal with treats and food in the classroom - if you factor that in, I might have come out ahead by suing.

I wouldn't be any worse off socially. It doesn't matter that I didn't ask for anything - many of the moms still think I'm crazy and suspect, simply because I have a child with these allergies. It's one of the few medical conditions that it's still o.k. to make fun of and discount, and that everyone can give an opinion on, without knowing anything about it.

McCobbre

It really depends on the manner and situation in which it was said.  Just the words don't really bother me.  If the parents always provide an alternative snack, then it's not a big deal.  Yes, child X will have to learn to deal with it.  I didn't find it offensive because that's the truth.   

Here's the bottom line: SCHOOL IS FOR EDUCATION. Food is generally superfluous to education. It's against the law to discriminate against children and all children are entitled to equal access to learning opportunities. If the food is needed for the educational experience, make it equal. If it's not, take it out.

It really should not matter if it's o.k. with the child. The child will, of course, say it's o.k. with him. He doesn't want to be the cause of the entire class missing out on the treat. He's used to being excluded again and again. But he shouldn't be excluded at school. School is different than parties and restaurants.

Parents should not have to provide an alternative snack every time. I did this - it's exhausting, it's expensive, it's time-consuming and it's wrong. I did it because it was less of a hassle than fighting. I did it because I didn't have the money to sue, and people already saw the small accommodations I asked for as over the top. I did it because I was aware that even my own allergy community did not fully support me. But I'm really bitter about it now.

People like to justify this situation. They say "well, perhaps this kid likes a sucker as much as the delicious cupcakes the rest of the class are having. Perhaps the child has gotten used to the situation. Perhaps the child wouldn't even appreciate the cupcakes if we went to all the trouble to provide them. Perhaps it's better to 'toughen up' the kid so he'll be able to deal with life." It's necessary to say those things in order to let the kid eat the sucker while he watches everyone else eat the cupcake. How else do you watch a child be excluded, time and again, and not let it get to you?

Go read the story I posted. It's chilling when you think about it in the context of inclusion and food allergies.

I'd like to print this out and give it to my school.  Thank you.

YouKnowWho

I believe FAAN supports Nut Free Zones.

And bans only for preschool age.

Woo eee.

My kids are allergic to wheat, rye, barley, egg, legumes, mushrooms, soy, peanuts and tree nuts.

Where are those bans?

Heck, most people don't even realize that DS's gluten & egg allergy are JUST AS SERIOUS AS NUT ALLERGIES. 

I'm just blessed we are not dealing with a milk allergy, how many people confuse ana allergies with intolerances.

CMdeux

Exactly-- a "severe" peanut allergy is one thing to ask for really out there accommodations for...




but if it is an allergy to eggs, wheat, or milk?  Forget about it.

NOT happening.  (At least not in the current culture.)


This attitude is what, more than anything else, has kept my child out of B&M classrooms.


It isn't that hard.  It really isn't.  It's quite simple, really:

the classroom is a place for learning and teaching.  Not a party venue.

  And you shouldn't come off as "That Munchausen Mom" for asking for what your child clearly NEEDS.

It still burns me up that FAAN refuses to admit that this is a bit of a.... (euphemistically) "problem" for some FA families.  Kids exist with extreme sensitivity to milk, wheat, and egg allergens, too.   

Ryansmom

IMO, all classrooms should be food free.  I'm a HUGE proponent for that.  CM is right.  The classroom is a place for LEARNING and TEACHING.  Definitely not a party venue.  For many more reasons other than LTFAs as well.

However, the problem will always lie in perceptions, lack of education, lax knowledge of applicable laws.  Perception of an allergy.  Which allergy.  Is one allergy more "allergenic" over another.  And the list goes on.   

I realize I'm not terribly offended by the comment. But there is so much to consider on this topic.

And for clarification, Ryan's second grade teacher never said that to him.  She never would.  It was a sub.  A sub who said the wrong thing.  I forgive her.  She is simply ignorant on the subject, but was trying to be friendly and cheer him up.  Not that he needed cheering up. 

My pet peeve is people who feel sorry for my son.  Like he's missing out on something.  He is a well adjusted as any other kid, loves life, and is not defined by his food allergy.  That is a big reason why a comment like that is not offensive to me and I view it as a matter of fact.  My son lives with that from time to time (not necessarily in school) and it's fine by us.  No, he can't have what everyone else is eating all the time, and we move on.  We actually encounter this much more at birthday parties. 

This issue should really be addressed as a 504 accommodation if that is what the parents and doctor feel is in the best interests of the child with LTFA.  As in no homemade treats.  And no product containing the allergen can be consumed in the classroom.  We used to serve homemade products in the cafeteria for the "forgetters".  Never in the classroom.

I see both sides.  But since I don't know the teacher, don't know the classroom environment, don't know the doctor's medical recommendations, don't know if there is a 504, it's hard to make a comment either way, except to say it doesn't bother me because I'm taking the phrase at face value.  It wasn't positive, but it wasn't negative from my viewpoint. 

The worst part, I have ALWAYS thought, is that while doctors agree on treatment for something like diabetes, there is no consistency with regard to food allergies.  We're damned starting at the top.  Another food allergy parent was my worst "enemy".  Talking to her was like talking with a two-faced idiot.

notnutty

I think some of it has to do with presentation.  It's a tough call.  If we weren't in the classroom, we weren't there to hear the tone of voice, inflection used, etc.  A bumbled response from an otherwise fine teacher?  It could be.  It's easy to go on the attack when we just hear about words verbatim as in a dialogue in black and white.  If we don't see the shades of grey, the dialogue can indeed be construed as negative. 

I'm simply drawing upon my own experience thinking about Ryan's 2nd grade teacher.  If she said that, it wouldn't bother me.  Well, it wouldn't bother me if it didn't bother my son.  And also, some kids are resilient, some are not.    Things that bother us may have not bother kids at all. 

And what kind of sucker was it?  A caramel apple one?  We don't know.  'Cuz I'd take a caramel apple sucker over a cupcake any day of the week.

ETA...things that I thought were a big deal ended up being nothing for Ryan.  Go figure.

Not that the presentation really matters, but wanted to let you know that the response was dismissing and sarcastic.  I am very close to the person who heard this dialogue.  She is in no way a person who exaggerates or likes "drama".  She was truly upset because of her relationship with my DS.


But really...I don't think it matters at all.  I was more upset about the exclusion than about the teacher.  She clearly does not know better and is probably just following orders.

end pg 2

[ajasfolks2]

Continued, Pg 3

notnutty

It really depends on the manner and situation in which it was said.  Just the words don't really bother me.  If the parents always provide an alternative snack, then it's not a big deal.  Yes, child X will have to learn to deal with it.  I didn't find it offensive because that's the truth.   

Here's the bottom line: SCHOOL IS FOR EDUCATION. Food is generally superfluous to education. It's against the law to discriminate against children and all children are entitled to equal access to learning opportunities. If the food is needed for the educational experience, make it equal. If it's not, take it out.

It really should not matter if it's o.k. with the child. The child will, of course, say it's o.k. with him. He doesn't want to be the cause of the entire class missing out on the treat. He's used to being excluded again and again. But he shouldn't be excluded at school. School is different than parties and restaurants.

Parents should not have to provide an alternative snack every time. I did this - it's exhausting, it's expensive, it's time-consuming and it's wrong. I did it because it was less of a hassle than fighting. I did it because I didn't have the money to sue, and people already saw the small accommodations I asked for as over the top. I did it because I was aware that even my own allergy community did not fully support me. But I'm really bitter about it now.

People like to justify this situation. They say "well, perhaps this kid likes a sucker as much as the delicious cupcakes the rest of the class are having. Perhaps the child has gotten used to the situation. Perhaps the child wouldn't even appreciate the cupcakes if we went to all the trouble to provide them. Perhaps it's better to 'toughen up' the kid so he'll be able to deal with life." It's necessary to say those things in order to let the kid eat the sucker while he watches everyone else eat the cupcake. How else do you watch a child be excluded, time and again, and not let it get to you?

Go read the story I posted. It's chilling when you think about it in the context of inclusion and food allergies.

Thank you Boo for this.  Truly thank you. 

notnutty

Mr. Rootbeer Float king has actually wrote to me in an email the following in regards to a last minute ice cream event for all students that my DS was excluded from.  My email to him asked him to reconsider these events in the future...

It was a last minute decision and there are times these things will happen. The Ice Cream Sundaes are the same ones that we had at Open House last week if he had one then. Same manufacturer if that helps.

Ummmm.  No that doesn't help because he was excluded from the sundaes at open house as well because we did not have a chance to investigate.


This isn't just about PN allergies.  This makes me crazy for any child with LTFA.

My DS ended up having a few Starbursts that day.  The school provided them for him.  I do not send in safe treats, but somehow the school always finds a way to exclude. 

Ryansmom

I think some of it has to do with presentation.  It's a tough call.  If we weren't in the classroom, we weren't there to hear the tone of voice, inflection used, etc.  A bumbled response from an otherwise fine teacher?  It could be.  It's easy to go on the attack when we just hear about words verbatim as in a dialogue in black and white.  If we don't see the shades of grey, the dialogue can indeed be construed as negative. 

I'm simply drawing upon my own experience thinking about Ryan's 2nd grade teacher.  If she said that, it wouldn't bother me.  Well, it wouldn't bother me if it didn't bother my son.  And also, some kids are resilient, some are not.    Things that bother us may have not bother kids at all. 

And what kind of sucker was it?  A caramel apple one?  We don't know.  'Cuz I'd take a caramel apple sucker over a cupcake any day of the week.

ETA...things that I thought were a big deal ended up being nothing for Ryan.  Go figure.

Not that the presentation really matters, but wanted to let you know that the response was dismissing and sarcastic.  I am very close to the person who heard this dialogue.  She is in no way a person who exaggerates or likes "drama".  She was truly upset because of her relationship with my DS.


But really...I don't think it matters at all.  I was more upset about the exclusion than about the teacher.  She clearly does not know better and is probably just following orders.

That explanation clears it up and helps one understand the context of the dialogue.

my3guys

Ryan's mom: We agree on this point: food has no place in the classroom.

After that, you lose me. If food doesn't belong in the classroom, then why is it ok to have cupcakes, and one child have a sucker?

I'm thrilled for you that exclusion doesn't bother Ryan.  But because it doesn't bother Ryan does not mean that other kids are equally unaffected.

I'm reminded of a thread about blood draws, where a parent was dreading it, saying how much she and her child hated blood draws.  Both you and I responded that if you don't make a big deal, then your child won't think it's one or something like that.

Well...that worked with one of my kids.  The two others both throw complete hissy fits for blood draws.  I've had the same attitude for all 3.

With all of my ds' allergies, I've tried to give him the tough love approach with regards to food.  He's always going to be in situations where he's eating different things from others.  I thought I was helping him develop coping skills.  Guess what?  He hates it when the rest of the party is eating pizza, no matter how much I tried to help him with this.  This is the same kid who could care less about blood draws by the way. Go figure.

So, I acknowledge how he feels, and try to help pick similar things for him to eat.  When you have MFA, picking same or similar things to eat can be very challenging.  That's why I resisted doing it at first.  I tried to pack him his favorite things, and get him used to eating different things.  Didn't work.

My ds' school happens to be food free with the exception of 2-3 events a year.  I'm very grateful.  Just keeping up with the daily baking/cooking/bday parties/social events outside of school is very time consuming.  If I had to do it constantly in school, it would be very difficult on my ds, and it would mean me literally being tied to my kitchen constantly instead of spending any quality time with my kids or doing the countless other things that need to get done in every day life.

I realize your family has been at this allergy thing longer than mine, and I'm always open to learn.  But please don't think that the issue of exclusion is as simple as you present it for your family.  That's not the case for everyone.

And since this post is already long, I won't requote Boo's post which Notnutty and McCobbre quoted.  I just want to say I completely agree with that post, and you've worded my thoughts exactly, and more eloquently than I could.

Gail

It really depends on the manner and situation in which it was said.  Just the words don't really bother me.  If the parents always provide an alternative snack, then it's not a big deal.  Yes, child X will have to learn to deal with it.  I didn't find it offensive because that's the truth.

It might be.  But it's not the teacher's place to decide. The teacher has no business saying this, determining what he needs in order to live with his FA, bestowing such wisdom.  Who is she to do that?

Just as it was not this teacher's place to determine what your DS needed to hear about the future of his allergy:

I've been on the other side.  Ryan came home one day three years ago somewhat excited.  A well-meaning sub teacher told him at lunch that some day he would probably grow out of his food allergy.  I quickly put an end to that thought and told him it was ignorant for her to make a statement like that not knowing his medical history, nor an in-depth knowledge of food allergies.  I had to tell him he's in this for life.  Barring a miracle, he's not going to grow out of it.  We can, however, pray for medical advances.

No, it's not the teachers' right to decide.  Is it the parents' right to decide?

What if. . . this is the parents' decision?  Informed decision.  Say the parent chooses exclusion and discrimination for their child?  Is that within their right?  Or because this is within a school building, should the parents' decisions regarding the management of their child's FAs be overridden by the school's legal obligation to provide FAPE?

I ask because I have a friend who is very knowledgeable about her child's rights under S. 504.  This woman and her husband are members of our local hospital's food allergy advisory board, and therefore, have been present and have participated in presentations by several experts in the field about their and their child's civil rights. 

At their choice, this child does not have a S. 504 designation, and it is their decision that classroom treats are not turned away.  It is at there direction that their daughter is given an alternative treat because, they have made the parental decision that, this is in the best interest of their child.  They believe, similar to what the teacher stated in the OP, that they wish their child to learn to accept that they cannot eat what others eat.

So I'm curious, for the boy described in the original post, what if the teacher were following the parents' directive?  And this decision was made by parents who were 'informed'?  What of this direction were memorialized in the child's individual accommodation plan?  If it's a FAPE violation, can such an accommodation be included in a child's accommodation plan? 

notnutty

That is a very good question Gail.  I fully understand where you are coming from.

From my experience within this district (being on the LTFA policy advisory board last year), I was told that my DS and only one other child (a good friend of mine) has a 504 designation or really any accommodations, period.

My point is I don't think there are very many parents within our district who even understand what their choices could be in order to make an educated decision.

I value the rights any parent has in respect to the management of LTFA.


I don't have time to elaborate right now, but you bring up a very interesting perspective that I would like to think about more.

Stinky6

these may seem like randon thoughts but two things came to my mind...

1) my friend's child who was born missing three limbs - and is competitive swimmer - doesn't focus or worry on what she cant do the same as anyone else -

2) the kids at school who a) eat nothing but junk, b) dont wear coats c) hair isn't cut or brushed - basically parents aren't parenting (although I realize that in ANY case there could be a very real issue - other than neglect...ie - sensory issues, or other challenges that I'm not aware of)

I've worked hard and been lucky in being able to get food free birthdays and many accomodations....but things still slip in...

Ryansmom

Ryan's mom: We agree on this point: food has no place in the classroom.

After that, you lose me. If food doesn't belong in the classroom, then why is it ok to have cupcakes, and one child have a sucker?

I'm thrilled for you that exclusion doesn't bother Ryan.  But because it doesn't bother Ryan does not mean that other kids are equally unaffected.

It's not okay to have cupcakes IMO.  I accounted for that in Ryan's 504 in the early grades.  We had a "communal" snack.  Every parent sent in a snack to feed the entire class 1X/month.  It had to be commercially labeled and Peanut/Tree nut free.  If it wasn't, it was sent home.  Even so, I couldn't not account for generics or certain brands I wouldn't allow Ryan to eat.  Thus, he always brought in a snack from home.  An alternate.  Picked from the same list of "acceptable" food choices however.  Many times it matched exactly what the class was eating. 

There were no homemade cupcakes.  Store bought cupcakes typically had peanut warnings and were not allowed in the classroom.  So this is where I'm coming from.  It was written in our 504 so this issue wasn't a big deal for us because it wasn't a deal at all. 

It goes back to the 504.  And what do the parents want for the child.  What does the doctor want for the child.  Bringing in homemade cupcakes would have been a 504 violation in Ryan's case. 

IMO, bringing in an alternate snack for certain occasions was my preference.  I know there are some who don't want to do it.  Then you really have to push for that food-free classroom.  That was option no. 2 for us.  Either place strong restrictions on food entering the classroom OR make it food-free.  Everyone opted on the former and we worked it to what we all wanted.  A team effort. 

I have a close friend who is a special ed teacher with a son who has celiac.  He rarely can have what the class is eating.  Our approach is very similar on how we want to do deal with it, how we want teachers to deal with it, and how we both raise our sons to deal with it.  She, however, did not want to go the 504 route. 

Do I *WANT* to provide an alternative snack?  Yes.  I don't want the school providing it.  Why?  Because I want Ryan to learn from my example.  Plan ahead.  Control your own "destiny".  Be prepared.  Think in advance.  He is the one who will have to live with this the rest of his life. 

Is my approach right?  Not for someone else.  But for me, my family, and my son it is.  Although the teacher was sarcastic in tone, perhaps the parents want to deal with it this way.  Some may feel sorry for the child.  I don't want anyone feeling sorry for my son though.  He has a different personality and his 504 was created with that in mind. 

Every child is different, every 504 is a bit different, just like many doctors treat FA's differently.  And that, I think, is the most unfortunate realization of all.

McCobbre

That's an interesting consideration Gail.  Then the parents' wish should be followed--but it would still be an insensitive way to do it.  The teacher's comments were patronizing, to say the least.

Reading notnutty's post made me think of an entirely different situation where my boss was once told by a person at his church coordinating the baptisms of the children that he didn't need a picture of an activity that was going on (he had asked when it would be appropriate to take a picture).  She determined what he needed.  That's seems quite arrogant to me.

No--this teacher handled it wrong. 

That said, I word things badly all the time when sometime comes up unexpectedly.  Who knows--had she really thought about it, she might have been more careful in her wording.

But Gail--the question you bring up is an interesting one.  Our Sped Dir, in our first plan meeting brought tis up. BTW-this took place 5 minutes after determining that my child qualified for a 504. It had actually been our second eligibility meeting, because at teh first, the principal and folks at the school determined DS was not eligible. They were completely unclear about how the law applied to DS (though I had documentation and tried to tell them).

At the second meeting, the Sped Dir made it clear he was leading the meeting.  After eligibiliy was determined, we moved into the planning meeting, and he said, "The SD can implement the 504 plan without the parents.  We want, but don't need parental input."  Then he went on to list he accommodations he had already planned on (it seemed to us), first being that there would be no food consumed in DS' classroom. 

Now, this was a brilliant move on his part, because we didn't request it.  It basically got us off the hook--and we, of course, loved the accommodation. 

But yes--the school can make the decision here in the interest of FAPE without the parents agreeing.  Technically.

Ryansmom

I know I'm one of the lone dissenters here on exclusion.  I have never felt Ryan was exluded.  In fact, I felt the opposite that we did what we had to do to make him feel included.

Goes back to perception.  Just like I wouldn't feel uncomfortable if a male coworker had an SI swimsuit calendar on their desk.  Others, however, might.  What one might consider a form of sexual harrassment to one, may not be construed as such to another.

continued next post . . .

[ajasfolks2]

pg 3 continued


Gail

Everyone has the right to meet their needs, individually.

There is a fine line though on this judgement.

A very fine line.

A lot of parents are so uneducated on their rights and the law, they make misinformed decisions...I know a lot of these folks in my district. They don't know about or have time for a 504 and are not willing to learn.

That is where the "system" is lacking.....it does not provide the same knowledge or resources as the schools have access. Attorneys, seminars, and even computer programs helping them manage special education.

I agree. That's a big concern. School district should do a better job of educating parents of their child's rights. Usually it seems schools are not forthright here because it creates more work.  It's wrong and illegal.  Parents are often not well-informed.  I understand. 

And I understand that it is usually the scenario that it is the school that 'waives' the child's right to FAPE, and that it is usually the parents who object.

But that's not my question. 

Do informed, educated parents have the right to waive their child's right to FAPE at school? 

I don't know.  I don't think they do have this right, but I could be completely wrong.  Maybe parents can waive their child's right to FAPE if 1.) the parents are informed and 2.) the parents can make the case that doing so is in their child's best interest. 

I guess I'm wondering if this is more complicated than a straight forward "education" issue. 

I understand that this is not likely be the situation with the boy in the original post.  But we don't know.  It could be.    I personally know situations in which these parents are informed and believe this is in their child's best interest.

CMdeux

The answer is "NO."

This is what I was told in answer to that VERY SPECIFIC inquiry by OCR.

Definitively-- no quibbling.

Because this is a fundamental right of the child.  NOBODY can "waive" that right.



ETA:  But it doesn't stop most schools from writing illegal accommodations in, either.  This entire issue came up (and resulted  in my coversation with OCR on this point) because I wanted an accommodation changed because it wasn't LRE and FAPE.

Because they aren't MY rights, I have no ability to "waive" them-- even if to do so is actually preferable for both myself and my child's school.

If a placement option exists which better satisfies those rights, then it has to be taken.  Period.

Gail

But Gail--the question you bring up is an interesting one.  Our Sped Dir, in our first plan meeting brought this up.  . . .

. . . the Sped Dir made it clear he was leading the meeting.  After eligibiliy was determined, we moved into the planning meeting, and he said, "The SD can implement the 504 plan without the parents.  We want, but don't need parental input."  Then he went on to list he accommodations he had already planned on (it seemed to us), first being that there would be no food consumed in DS' classroom. 

Now, this was a brilliant move on his part, because we didn't request it.  It basically got us off the hook--and we, of course, loved the accommodation. 

But yes--the school can make the decision here in the interest of FAPE without the parents agreeing.  Technically.

Yes, the school is responsible for ensuring FAPE.  The purpose of the accommodation is to ensure the child's right to a Free Appropriate Public Education.  Right?

But. . .

May the school allow the parents' to "waive" FAPE if the parents make the case it is in the best interest of their child?

Gail

The answer is "NO."

This is what I was told in answer to that VERY SPECIFIC inquiry by OCR.

Definitively-- no quibbling.

Because this is a fundamental right of the child.  NOBODY can "waive" that right.

I think this is correct. 

But I do not have any supportive 'evidence' at hand.  Perhaps this deserves its own topic under resources section so that these are at hand for members. 

it does make you stop and think. . .  parents of FA children do/may not have the right to have the school manage their child's food allergies in the manner they wish.  That is pretty heavy stuff, IMO.

McCobbre

But Gail--the question you bring up is an interesting one.  Our Sped Dir, in our first plan meeting brought this up.  . . .

. . . the Sped Dir made it clear he was leading the meeting.  After eligibiliy was determined, we moved into the planning meeting, and he said, "The SD can implement the 504 plan without the parents.  We want, but don't need parental input."  Then he went on to list he accommodations he had already planned on (it seemed to us), first being that there would be no food consumed in DS' classroom. 

Now, this was a brilliant move on his part, because we didn't request it.  It basically got us off the hook--and we, of course, loved the accommodation. 

But yes--the school can make the decision here in the interest of FAPE without the parents agreeing.  Technically.

Yes, the school is responsible for ensuring FAPE.  The purpose of the accommodation is to ensure the child's right to a Free Appropriate Public Education.  Right?

But. . .

May the school allow the parents' to "waive" FAPE if the parents make the case it is in the best interest of their child?

See--I'm thinking not.

There are other things the school doesn't defer to the parents on.  Like abuse.  The parents may feel that hurting their child is okay, but the school has a responsibility to the child, not to the parents.  (Of course, this goes far beyond the school, as others are required to report suspected abuse, too).

Let's see--what else.  Oh, law requires that a child be educated--even if parents don't want it. 

I think the law is on the side of the child here, not the parents.

end pg 3

[ajasfolks2]

pg 4

CMdeux

But Gail--the question you bring up is an interesting one.  Our Sped Dir, in our first plan meeting brought this up.  . . .

. . . the Sped Dir made it clear he was leading the meeting.  After eligibiliy was determined, we moved into the planning meeting, and he said, "The SD can implement the 504 plan without the parents.  We want, but don't need parental input."  Then he went on to list he accommodations he had already planned on (it seemed to us), first being that there would be no food consumed in DS' classroom. 

Now, this was a brilliant move on his part, because we didn't request it.  It basically got us off the hook--and we, of course, loved the accommodation. 

But yes--the school can make the decision here in the interest of FAPE without the parents agreeing.  Technically.

Yes, the school is responsible for ensuring FAPE.  The purpose of the accommodation is to ensure the child's right to a Free Appropriate Public Education.  Right?

But. . .

May the school allow the parents' to "waive" FAPE if the parents make the case it is in the best interest of their child?

I think that if it is a case of FAPE versus LRE in a specific case, then the answer becomes "probably."   And in this case, eligibility isn't even at issue.  This becomes a matter of "placement options available/appropriate."

But if the reasoning is that "this is expensive/awkward to implement/a general pain for everyone" then the answer is no.

In other words, if it is in the CHILD's best interests-- in a clear-cut fashion, that is, and with evidence for a particular placement option being "best" under the circumstances, then sure... these kinds of placements are made all the time, right?  (Special Ed bus transport, for example, or school placements out-of-district.)  They just have to be justified from the CHILD's perspective as meeting the child's NEEDS and RIGHTS "the best" of those options available.

lakeswimr

If the teacher has attitude I would hope the parent of the FA child involved gets told about it and talks with that teacher.  That isn't OK. 

As for all the legalities involved here the thing is I don't see that the way many here interpret the laws around this issue to be the same way school districts and OCRs etc are interpreting it.  We can be right on this issue but it won't get us far if conditions are opposed to us, you know?  Being right is not my concern.  I am concerned with making positive change when *possible*, *avoiding banging my head against a brick wall and possibly  making enemies and getting worse conditions as a result*, and keeping my son happy and safe in school.

I know everyone is different and my son is young to his opinion could change but my son would tell you he would rather allow treats to be served (not in the classroom but to his class in the cafeteria) so that he could get his special, safe treats.  He has told me that he doesn't care if others are eating something different as long as he gets sugar.  That's what he cares about.  He would much rather have treats sent in on occasion so he can have his treats from  his treat box than there be no treats for anyone.  *I* would rather the school go food-free for celebrations and birthdays but DS wouldn't agree.  And he does NOT feel left out.  Yes, there have been a few times in his life when he was sad that he couldn't eat what others were eating but he wasn't traumatized and he got through it.  I think it is good he had those experiences.  Life is going provide lots of such experiences to him and I want him to NOT care.  Mostly he doesn't care.  If he cares we have a deal that he gets an extra treat at home or french fries later and I point out the others aren't getting the special treat he is getting.  I point out that if he didn't have food allergies he wouldn't get so many treats. 

Our school allows treats for DS's class but they get eaten in the cafeteria and the FA children eat allergy-free food.  This year so far no one has sent in any bday treats for some reason.  Maybe the have the false impression that bday treats are not allowed.  I don't know.  But I know several have sent in non-food crafts instead.  I am very touched by this kindness. 

I really don't care much about this issue.  If DS were upset by it I'd fight to make positive change.  I do not feel that DS's rights are the least bit violated.  If *classroom lessons* used foods that DS couldn't touch that would upset me.  That isn't OK.  I do not feel that bday treats for others violate DS's rights in any way. 

Ryansmom

lakeswimr, what you wrote is similar to what Ryan's situation was in the younger grades. 

Now that Ryan is in 7th grade, I don't send in a "safe" treat box or snack.  He simply comes home and tells me if there was, for example, a pizza party for some special award.  He doesn't eat the pizza because we don't know where it came from, don't know if the hands serving are clean, so he just avoids.  But he sure lets me know when he gets home, then asks for a special treat like a pack of gum or a candy bar.  We used to plan more in advance when it mattered when he was young.  Now he doesn't care.  I just asked him an hour ago if it bothered him when he can't eat those things like pizza at a pizza party.  He said, "No, not really."  It's more of a slight annoyance to him if that.  Things have just evolved in that direction for us.

There are things they do during extra curriculars too.  We haven't encountered it yet with Ryan (my daughters have, though, in their sports) like stopping at a restaurant on the way back from the Away sporting event.  Should the school bus NOT stop?  I'd rather the kids have food and drink, but at a relatively "safe" restaurant.  Ryan will pack his own and have money to buy a la carte safe items IF possible.

Back in March 2003, I said to our principal, "Let's take the rough draft 504.  Let's adapt it to X school.  I don't want a complete change, rather I want to work with what we've got.  Keep traditions if possible, but make them safe."

Although I have never liked the trend of so much food in school, I wanted to work to make a very peanut restrictive 504 work in our elementary school.  I think that worked to my advantage.  It was not an adversarial role, but one of mutual cooperation.  I was working with good people though--ones WITH A BACKBONE TO ENFORCE ACCOMMODATIONS.  So many do not have that advantage.   

The important thing to remember is what is right for one, is not necesssarily right for another.  It's why I am somewhat against a food allergy policy in a district.  I could elaborate on that, but that's a whole 'nother post.  I've seen many food allergy policies that simply are not restrictive enough for our family's comfort zone.

lakeswimr

Ryansmom,

I hope my son will grow up and not care about stuff like that.  I wish they wouldn't have things like that in school.  But I want DS safe and happy.  Those are my top priorities.  He doesn't need to eat the same food as everyone else to be happy and he usually can't if he wants to be safe.  Like you we have a tight comfort zone.  I would also worry about x-contam from hands of the server, etc.  People can't label read for DS with 4 non-top 8 allergens.  It is just so much easier for me to provide all DS's food (or to be the one to read the label of what others bring and to be the one to serve DS from a newly opened, by me, package.)  There are some things I don't trust to others and I hope my son will grow up to be mature enough to do what your son does and keep the safety precautions that we follow now. 

Also, I think the more time I have spent with DS after knowing about his FAs I just don't focus so much on food myself anymore.  Plus I grew up a veggie and am very used to others eating things and not partaking.  So, others get to eat something and I don't.  It doesn't have to be a big deal.  I get that for some children it is going to hurt and I am glad people here advocate for those children.  Everyone is different and situations are different.  There are some schools where food creates an unsafe classroom environment and where FA children are left out of field trips to food related destinations, left out of actual classroom lessons and regular activities.  That isn't OK with me.  Bday treats--I am not going to put that on my list of issues to fight. 

Ryansmom

Ryansmom,

I hope my son will grow up and not care about stuff like that.  I wish they wouldn't have things like that in school.  But I want DS safe and happy.  Those are my top priorities.  He doesn't need to eat the same food as everyone else to be happy and he usually can't if he wants to be safe.  Like you we have a tight comfort zone.  I would also worry about x-contam from hands of the server, etc.  People can't label read for DS with 4 non-top 8 allergens.  It is just so much easier for me to provide all DS's food (or to be the one to read the label of what others bring and to be the one to serve DS from a newly opened, by me, package.)  There are some things I don't trust to others and I hope my son will grow up to be mature enough to do what your son does and keep the safety precautions that we follow now. 

Also, I think the more time I have spent with DS after knowing about his FAs I just don't focus so much on food myself anymore.  Plus I grew up a veggie and am very used to others eating things and not partaking.  So, others get to eat something and I don't.  It doesn't have to be a big deal.  I get that for some children it is going to hurt and I am glad people here advocate for those children.  Everyone is different and situations are different.  There are some schools where food creates an unsafe classroom environment and where FA children are left out of field trips to food related destinations, left out of actual classroom lessons and regular activities.  That isn't OK with me.  Bday treats--I am not going to put that on my list of issues to fight. 

Completely understand.  I tell all my kids that everyone has a cross to bear.  Some we can't see, some we can.  They don't have to be physical, they can be emotional or psychological.  Birthday treats are not on my list of issues to fight given *my own circumstances*.  The point being, I don't want Ryan feeling sorry for himself, nor anyone else feeling sorry for him.  He has so much in his favor, so many positives and that is what I want to focus on, all while keeping him as safe as possible and absolutely healthy. 

It's very quick and easy to jump down someone's throat.  Just last week I got a call from school while I was at the gym about Ryan's 504.  It's not the quietest place, and all I heard from Ryan's counselor was removing the 504.  Believe me, I got very annoyed and said I would consider going directly to OCR. 

I regret that.  I was only hearing one thing.  I requested documentation on the reason for the change.  Turns out PA Law has changed.  All 504's for students with GIEP's and IEP's will now have all accommomdations written in the GIEP/IEP.  Any student with a FA who does not have a GIEP or IEP will have a 504.  The Director of Special Ed has sent me the documentation from the state so I can read it at my leisure.  I need to understand the law before giving consent to a change. 

At first, I was angry.  But then I calmed down and spoke with our district's new coordinator for the Food Allergy Policy (that's another story).  He was very helpful and worked with me to obtain the reading material from the Director of Special Ed. 

The point is sometimes we have at more than what is being said.  There may be more going on and our first reaction maybe understandable, but *perhaps* not appropriate if we don't have all the facts.  It is easy to be quick to judge.

Do I think the teacher who made the comment in the original post was right or wrong?  It appears to be wrong.  But maybe the parents want it this way.  Maybe the teacher has dealt with the parents and is a bit frustrated like I was with the other parent of another FA child.  Said child MIRACULOUSLY has grown out of her allergy. Makes me wonder if she every really had an allergy given the absence of medical data like I have given.  That child's parent was a total pain in my a**.  AND a pain in the a** to the teachers and administrators.  Was she right with a sarcastic attitude?  Absolutely not.  But sometimes we are driven to say things we regret. 

Truly so many variables.  And I really try to exercise caution in looking before leaping.  It's something that I work hard at because it's not a natural for me.

notnutty

I don't think anyone here is "leaping" Ryansmom.


This was clearly a child who was upset and a teacher who had an attitude.  There is no place for behavior like that over a cupcake that is not necessary for education.

My DS has different treats on occasion.  He doesn't seem to care one bit.  God blessed us with a very "happy" child who doesn't seem bothered by too much with regards to LTFA.


However, the reason I am so upset is because I know the culture in this school.  The school does not go to the cafeteria for snacks or celebrations.  In fact the solution they offered to me was for my DS to sit in the hall if an unsafe treat was brought into the classroom. SIT IN THE HALL!

We have discussions with my DS all the time about how having a LTFA is not too bad and there are so many other things that could be worse.  He gets that.  I get that.  We don't worry about the small things.  My DS does not feel sorry for himself either, however, that does not mean he does not want to be included and feel a part of the group when possible. 

Gail

per booandbrimom2 regarding her son: 

I wish I could have changed things for him. I think people underestimate how different things were in school even 10 years ago. Advocacy has made a difference. I think from here, though, it's going to take lawsuits to really change the environment.

Actually, I think it is probably more difficult now in some respects.  My DD (now 16) was one of those kids put in the hallway 10 years ago when food was served.  While it 'only' happened once, the action was so blatantly discriminatory, that it was probably easier for staff to recognize it as exclusion and to 'bust'. So maybe now, as with the exclusion of this particular boy (in the OP sitting inside the classroom at his desk with a dum dum) the situation really isn't all that much 'better' or 'different'.  (shrug)

It does seem like we've reached some sort of glass ceiling that will take 'landmark' litigation to break through. 

booandbrimom

Ryansmom, I would also comment that children's views on this change over time. If I had asked my son what he thought in 7th grade, he would have said exactly what your son said - it's fine. He said that repeatedly to me during that time. He was so very afraid of being different from other kids during jr. high that there was no way he could think about what he was feeling.

It's only now...as a freshman in high school...that he's starting to talk about what it was like to be perpetually excluded. He does not pity himself but he's starting to see the place for advocacy.

I'm just warning you that the cake is not totally baked yet. You may be surprised at what feelings come up for your son as time passes.

CMdeux

I agree-- the level of sheer despair and bitterness that I've glimpsed in my daughter is shocking.

Truly-- shocking.

She's only ten/8th grade right now, but I think that her feelings on this one are unlikely to change with time.  If anything, I suspect that they are only likely to become more pointed.

This is shaping her as a human being and as a young adult.

She is seriously considering pursuing a law degree so that she can "right" some of the wrongs that she's experienced-- first hand. 


I don't think that is an entirely 'normal' ambition for a ten year old girl.  But she's mad as hell and she intends to do something about it.

[ajasfolks2]

more pg 4

Guest AnonymousToday

I'm a regular but I need to post this as a Gues.  I've been waiting for the right point to swing back to the comments ajasfolks2's made at this thread's beginning. Ajasfolks2's comments really resonanted with me. 

I increasingly have felt just in the course of starting to deal with having a child with LTFA attending school that I'm ended up more of a groundbreaker or activist than I had ever imagined I would be.  Severe food allergies seem like a new "category" of disability or difference that is going to require speaking up and taking action in order for these children and adults to be kept safe and properly included at school and other places.  As others so poignantly pointed out, if we substitute the words "wheelchair" or "race" the exclusions that don't raise eyebrows when applied to children with LTFA immediately seem reprehensible. 

My experience in trying to keep my child alive and fundamental civil rights protected has been extremely uncomfortable.  My first inclination is to very much want to have a congenial relationship and have them (schools, etc.) "like" me and think well of me.  But I'm learning that if I avoided school officials disapproval my daughter simply wouldn't be there, basic civil rights be damned. 

I'm coming to view it as increasingly important to "call a spade a spade" and respond to events with the gravity the situation calls for instead of sacrificing my daughter's safety or civil rights to stay or be in school official's good graces. 

My child was given food capable of causing anaphylaxis.  Teh school had been told in writing not to give it to my child.   Their own school policies forbid it.  And they were told to call me before offering my child any food or using any food in the classroom. 

But they didn't follow my instructions or policies.  They stalwartly defended giving my child the food because they told me about it when I came to get my child.  (Yep.  Telling me to watch to make sure my child didn't die was supposed to be good enough.)  Phone calls simply went unreturned.  Once I finally got a meeting with the director, her response was that my child's food allergies simply were too severe to allow her to atend the school she had been at for two years.  No new information.  No new events except their reckless endangerment of my child. 

Because of the responses I received -- refusing to ask me before giving her unplanned food in the future and stalwartly insisting they did nothing wrong -- I reported them to DCFS and I filed a complaint with NAEYC. 

If I leave my child in the car for 10 minutes, I can be arrrested for child endangerment.  If I fail to take my children for medical care when they are sick, I can lose parental rights.  If I fail to supervise my children and have them running outside by themselves, I can lose parental rights. 

Why do we treat grossly negligent treatment of our children at schools differently?  When a teacher has been told in writing not to give our child certain foods, and then we find out, they decided "what the hay" and did it ANYWAY despite hte knowledge our child could die, why doesn't that warrant a formal complaint against licensing agencies, regulatory agencies, and others.

No.  The school wasn't closed.  No one lost their license.  They weren't stripped of their accreditation.  But NAEYC formulated a 2 1/2 page single-space complaint based on the incident. 

A friend dealing with school issues said we travel the road others have paved, and we are paving the road for still others.  Food allergies are new enough that it's going to take some volume of complaints to accreditation and licensing agencies about knowingly endangering our children.  It's going to take some volume of complaints to OCR for discrimination against LTFA to be treated as being as reprehensible as discrimination against a child in a wheelchair. 

I think ajasfolks2 is right.  We have to speak up.  We have to take action.  We have to defend our children's right to safety and civil rights.  We have to document instead of fuming or venting to the principal or teacher because written documentation starts to look like it's serious, it matters. 

BTW, I've discovered many law schools have special education advocacy clinics where a professor supervises law students. 

YouKowWho

It's a catch 22 for me.

Both of my kids are going to have learn in life that things will not change to accomodate them.  Sure, DS2 will have it slightly easier because removal of nuts is no big deal (well it can be no big deal) whereas DS1 will struggle more with gluten.

And they will have to learn to navigate every social situation.  Is it wonderful when a parent steps up and says let me bring a safe treat for all?  Sure, it's a nice surprise.  Does it stink that DS1 has had to dig into his treat bag a few times this year.  It certainly isn't fair, but neither is life.

He sees at home there are foods his brother eats that he cannot and food he can eat that his brother cannot.

I do get tired of food as a classroom learning material though.  But it is giving DS1 some food for thought.  Teacher changed a project somewhat at the last minute from gingerbread house to gingerbread boy.  I don't have a safe cookie for him to decorate.  I suggested doing foam (like we planned for gingerbread house) and he came up with the idea to use rice bread so he could decorate the gingerbread man like the other kids, he could eat it like them AND it would look different than the other kids so there would be no confusion it was safe for him!

Honestly, I get more upset over the food situation than either of my kids do and I really need to take a lesson from them.

TabiCat

I often feel stuck in the middle here with this topic. This is not to minimze anyone elses efforts to protect their child's rights and safety.

Clearly I would have a problem with a planed lesson or feild trip that he could not participate in but I still have a hard time seeing that eating a different treat is excluding my child. So long as he has something to eat with the others.

I grew up with very obviouse differances from my classmates and he will as well it is not always easy but nothing can change that fact.       

Arkadia

And they will have to learn to navigate every social situation.  Is it wonderful when a parent steps up and says let me bring a safe treat for all?  Sure, it's a nice surprise.  Does it stink that DS1 has had to dig into his treat bag a few times this year.  It certainly isn't fair, but neither is life.

The very first "ground rule" the counselor laid down for ANY relationship, including marriage was:

We couldn't use the word "fair".

It's destructive. The swirl down the drain.  A liar.  It will tear ANY relationship apart. (Including those at school) It's a sinister trap.

You'll always be focused on who is a smidge ahead.

"There is no fair......there is only what is reasonable."

It was worth going just to hear that. 

I mean, as a mother of four children, can you imagine if based my actions on what is fair for me?

As a wife?

A daughter?

A friend?

I mean, there's looking out for numero-uno, and then there's reasonable. I know who I want to be and be around. What gives me a spirit of giving and what makes me recoil.

[ajasfolks2]

more pg 4

Arkadia

It really depends on the manner and situation in which it was said.  Just the words don't really bother me.  If the parents always provide an alternative snack, then it's not a big deal.  Yes, child X will have to learn to deal with it.  I didn't find it offensive because that's the truth.

It might be.  But it's not the teacher's place to decide. The teacher has no business saying this, determining what he needs in order to live with his FA, bestowing such wisdom.  Who is she to do that?

Just as it was not this teacher's place to determine what your DS needed to hear about the future of his allergy:

I've been on the other side.  Ryan came home one day three years ago somewhat excited.  A well-meaning sub teacher told him at lunch that some day he would probably grow out of his food allergy.  I quickly put an end to that thought and told him it was ignorant for her to make a statement like that not knowing his medical history, nor an in-depth knowledge of food allergies.  I had to tell him he's in this for life.  Barring a miracle, he's not going to grow out of it.  We can, however, pray for medical advances.

No, it's not the teachers' right to decide.  Is it the parents' right to decide?

What if. . . this is the parents' decision?  Informed decision.  Say the parent chooses exclusion and discrimination for their child?  Is that within their right?  Or because this is within a school building, should the parents' decisions regarding the management of their child's FAs be overridden by the school's legal obligation to provide FAPE?

I ask because I have a friend who is very knowledgeable about her child's rights under S. 504.  This woman and her husband are members of our local hospital's food allergy advisory board, and therefore, have been present and have participated in presentations by several experts in the field about their and their child's civil rights. 

At their choice, this child does not have a S. 504 designation, and it is their decision that classroom treats are not turned away.  It is at there direction that their daughter is given an alternative treat because, they have made the parental decision that, this is in the best interest of their child.  They believe, similar to what the teacher stated in the OP, that they wish their child to learn to accept that they cannot eat what others eat.

So I'm curious, for the boy described in the original post, what if the teacher were following the parents' directive?  And this decision was made by parents who were 'informed'?  What of this direction were memorialized in the child's individual accommodation plan?  If it's a FAPE violation, can such an accommodation be included in a child's accommodation plan? 

I asked very similiar questions some years ago at the other board. Specifically wrt nurses and licensing and how formal notice/"being made aware" translates to Duty of Care.  How someone cannot "waive" my duty/obligations under my State Nurse Practice Act as an RN.

Or another specific example I gave:  A parent refusing blood under the grounds of religious exemption for a child, who, by any standard needed a blood transfusion to survive. Surgery. And in specific circumstances, yes, State Mediated Action/Legal Action has ensued.

Not always with the outcome you'd expect, either.

But you know, there are things called "DNR's". Do Not Recusitate orders. Thing that command me to go against what would normally be an obligation.  Really, ultimately, you're not going to find it's a black and white decision, it's a combination of factors, and individual circumstances.

I suppose, if the aforementioned child was being unusually harmed by their parents decision there might be grounds, but really, any good relationship between a school system and a family that truly puts the child's best interests first takes into consideration not only the legalese, but the core values of that family. And that is what is really in the best interest of the child.

The balance thereof IS what a "F Appropriate PE" and "LRE" is.

I'd think LRE and FAPE only should come into play when the child experiences a net detriment. When there is more than a blip on the radar.  Something that is out of the ordinary. And it doesn't sound like the child you speak of is experiencing that.

Actually, I'd think anyone who

"are members of our local hospital's food allergy advisory board, and therefore, have been present and have participated in presentations by several experts in the field about their and their child's civil rights."

is more qualified knowledgeable to waive their right to S. 504 than someone who isn't. 

Arkadia

"Say the parent chooses exclusion and discrimination for their child?"

Isn't that essentially what a Peanut Free Table is? Most of them, at least.

"Or because this is within a school building, should the parents' decisions regarding the management of their child's FAs be overridden by the school's legal obligation to provide FAPE?"

Being able to honor both the instincts of a family and the obligations of public education would seem to me more a "FAPE" than usual.

Hey, are you doing consulting work or what? 

Anyways....remember that checklist we discussed years back related to proper inservicing of staff in the use of an Epi-pen by the school nurse? Or the one related to who has formally read and IEP/504 and  understands/has had an opportunity to have questions answered/knows who is the coordinator/formal "go-go" person?

Well, if someone is going to "waive their rights", I'd suppose there would need to be official documentation in place that not only formalizes that, but documents the absence of any instances that would exclude the parents' ability to waive that right for their child or at least warrant further investigation before proceeding to waive those rights.

And a time period where such would be reviewed.  Maybe during grading periods. Maybe something similiar to "Domains".  As long as those criteria are being met.....everything is copacetic. No need to investigate.

This isn't advice, it's just a perspective.     

end pg 4

[ajasfolks2]

Begin pg 5

Scout

Hey, just put your child in an organized sport and they find out life isn't fair.....just had to say it.....our whole life reverts back to sports talk...

anyway. My dd has a 504 and it is followed to the letter...Thankfully.
there is a little girl in her class who also has one BUT her parents are always changing the rules from instance to instance......I cringe.

BUT really.....life is not fair....They are making candy trains this week...other little girl will be able to use all the may contains, dd will not (I ordered from PFP)....

this morning as I said "your train will look a little different cuz mom cant find safe orange wedges, ok"  she said "all trains look different mom, its a craft" 

okie dokie....I know things will ebb and flow but I just go with mine.

booandbrimom

I keep coming back to this point though: it's not about fairness. It's about an equal education for all children.

What do cupcakes have to do with education? Why have them in the classroom at all if they have nothing to do with education and some children are excluded from participating?

That would be like bringing in a pony and giving rides...except to the children in the wheelchairs. It's fun. Why not? Life's not fair and they should get used to the sight of the other kids sitting on the pony and having fun, right? Isn't that what school is for?

hopechapel

I've been very embattled over the years from nursery to first so much so that last year I had to take an emotional health break and I think my son did not have much of an advocate.  He was kind of left up to the school system.  I have always done private school so I have not had the education in 504', etc. that many of you have had. 

The worse thing for my son, I believe, is not the different treat.  The worst thing is the atmosphere of fear that surrounds him and the insensitivity of his caretakers, sometimes myself included, to talking over his head.  The hoopla over his allergy and the conversation piece it is!  Every waiter/waitress wanting to know!  The kids knowing, the teachers remarks over his head!  I feel so sorry for him because we all can't shut up around him and let his allergy be quasi-private. It must seem to him like it utterly defines him because it is a transaction I have to make for every playdate, school and camp.  I wonder sometimes if he would be emotionally healthier if I had not bothered.  Did he have to go to camp? to preschool?  I'll never know because I thought I was doing the right thing by getting him as included as I could.  But there has been a terrific price. 

And ya know -- I am in the boots now of the mom who does not want as much accomodation.  I used to hate the denial mom in my other school who would not even talk to me and whose childs' epi and allergy were a secret.  But I understand some now.  I don't want my kid at the nut free table and I don't think I have to worry "may contains".  What I do not want is for the school to see me as the example and view the other mom's as hysterical.  The nurse at my public school told me that she had to bring a clean desk into the cafeteria daily to put at the end of a cafeteria table for an FA child.  The FA child was so mad the child refused to eat.  Finally the parents relented. 

Within the structure of the law each child's needs are individual.  To some degree, you have to sympathize that the schools are a little confused as to what fA parents want because it isn't all the same.  And I think, they think it should be.  Some of us like treat boxes and nut free tables and some of us hate em.  Some of us let our kids eat "may contains" and some don't let their kids eat anything not prepared at home.  I, personally, differ from most because I'd rather my kid eat something homemade from a careful mother than eat some packaged, processed junk even if it has a label.  The school has to begin from scratch with each parent and respect each parent.  And it does not make for easy policy making. 

(don't mind me, I've never sympathised with the school before).

cya

Anonymus today and hopechapel make a lot of excellent points. Great posts by both! 

my3guys

I'd like to piggyback on Hope Chapel's post on the challenges schools can face in managing LTFAs with a chaotic example from our Thanksgiving Feast.

Since the school does so few food events, I didn't make waves when this was added back in this year.  The other nut allergic parents in ds' grade have looser comfort zones than me, so I knew if anyone was going to complain about it, it would have to be me.  I decided to make it as safe and inclusive for ds as possible.

Different moms signed up to prepare one dish out of a traditional Thanksgiving Feast that would serve 60 people.  I signed up for dessert (even though I'm no Martha Stewart!)  My friend who signed up to do the turkeys was having trouble finding a store to fill her order, and finally found one which is known for having products with nuts.  I told her to send an email letting the other allergy parents know and I would be making one nut free turkey breast in my home if other parents felt more comfortable.  No allergy parents objected.

A mom who has an older child with an allergy whose grade would not be participating in the feast threw a fit.  She complained to the principal about the feast, the turkeys, me and on and on.  The principal was caught in the middle between 2 allergy moms.

I caved to the mom who was really upset, and my friend and I each cooked 2 turkey breasts.  The kids had a blast.  Do I think this event was necessary? NO WAY!  Did the kids enjoy it, including my own who was so thrilled to eat all the dessert and have the kids really enjoying the desserts I made? You bet!

I agree schools face a challenge with LTFAs.  I also wish I never started my ds at the peanut free table.  It's done more harm than good for him and I can't get him to move right now even on the days that I volunteer in the cafeteria.  It's a tough balance at times for everyone caring for our kids.

Arkadia

I keep coming back to this point though: it's not about fairness. It's about an equal education for all children.

and it's an education to learn the world isn't always going to be cookie cutter the same person to person, each and every time.

Arkadia

We all know that life isn't fair, tell me something I don't know.

It's about the law that is in place for children with any disability.

A lot of folks worked really hard to gain ground for these kids, kids (and parents) at an extreme disadvantage.

A lot of kids need these laws to meet their individual needs and to survive against  CRUEL SCHOOL PERSONNEL THAT DON'T UNDERSTAND.

No, it was about Gail's post and a LOVING PARENTS' CHOICES who DO UNDERSTAND.

PLEASE DON'T MINIMIZE THE IMPORTANCE OF THESE CHILDREN'S RIGHTS AND NEEDS.

I'd kindly also request we not get so dramatic and misconstrue what's being said.

my3guys

I keep coming back to this point though: it's not about fairness. It's about an equal education for all children.

and it's an education to learn the world isn't always going to be cookie cutter the same person to person, each and every time.

I think kids with food allergies, especially MFA's, learn this lesson really quickly, before they even get into school at the birthday parties and other social events.  I don't think schools need to reinforce this "lesson" with constant food events at school.

CMdeux

I keep coming back to this point though: it's not about fairness. It's about an equal education for all children.

and it's an education to learn the world isn't always going to be cookie cutter the same person to person, each and every time.

I think kids with food allergies, especially MFA's, learn this lesson really quickly, before they even get into school at the birthday parties and other social events.  I don't think schools need to reinforce this "lesson" with constant food events at school.

Exactly.

That's no different than noting that since racial stereotypes and discrimination still exist, that we should ALLOW it in that environment.

Totally speechless if there are those that actually believe that elementary school kids should just "suck it up" about racial bias, by the way.     

[ajasfolks2]

Pg 5 continued

hopechapel

It is almost a little comical how the school thought it was a great idea to put all the food allergic kids on one class this year.  :rotf:


How the three moms are:
   

and the kids:
   

and the teacher:



He asked me hopefully if ds would tell him if he needed Epipen. :rotf:   (but not, of course)

But I think they thought naively that we would all love and support each other.  And that is my goal.  I really would do anything for the mom with the MFA child.  I can't help it my boy is a wild one and hers does not want anyone to touch him and they are at each others tables all day.


I am grateful for legal advocacy on our children's behalf.  And the great spirit has given me my own corner of it.  The camp code in New York State.

CMdeux

That's just it.

Until schools see kids (and families) as individuals rather than "conditions" this isn't going to get any better than it is now.



I loathe "school policies" for disabling conditions, FA included.  Frankly, such things should be a BASELINE-- a boilerplate for starting from.  Nothing more.  Because children are children first, yk?  And their disabilities shouldn't DEFINE them.

This entire mentality is how we get into the position (as parent advocates) of feeling, or even BEING MADE TO FEEL, as though we've "used up our tickets" early in the year.

It's as though everyone is allowed only a certain number of "special" needs.  More than that, and you're using up more than your share and you need to just shut up now, or something.... YK?

It's maddening-- but not unique to FA.  It's unique to special needs parenting.  Either you're "that helicopter parent" or your kid winds up with very serious unmet needs that no parent in his/her right mind would tolerate.  We've seen this ourselves with DD.  FA comes first.  Always.   But it means that sometimes other issues "float" or go unresolved entirely-- sometimes for years.   

Arkadia

I keep coming back to this point though: it's not about fairness. It's about an equal education for all children.

and it's an education to learn the world isn't always going to be cookie cutter the same person to person, each and every time.

School does NOT equal the real world and should not be compared.

oh it certainly is preparation for the real world. Hell, my IEP process is NOW including Transition Planning, since my 14 year old man-child is um.....fourteen.
Transition Planning.  You might want to look it up. If you have an IEP, you need to understand it.

The IEP invite didn't come in a white envelope this time.  It came in a letter sized manilla envelope this time and additional paperwork related to Transition Planning.

Among the boxes checked regarding the "purpose of this conference" was:

"consider postsecondary goals and transition services (beginning at age 14 1/2. )"

If that isn't real world, I don't know what is.

You want to know what else was included? (rhetorical, since I'm telling you.)

A cover letter:

Dear Parents,

     Enclosed please find your copy of the invite to the high school meeting.  Your child will attend this meeting and all future meetings.  The meetings will take place at <Jr. High School Nam> in the conference room.  Also enclosed is a survey the high school would like you to complete and bring to the meeting.  A copy of your rights is included for your records.

...end excerpt.

bold added.

It's not optional. My child now unequivocally has a say in these meetings. Can over-rule my best intentions with no more than a preference, since, believe me, if the school prefers what he has to say, it will make ANY prior disagreements I've had with them regarding management styles and food allergies seem trivial.

Consequences be damned.

If that isn't "real world", I don't know what is.
But really, I'm all for him being at those meeings. He's attended IEP meetings before, but really, not for the nitty gritty parts.

and really, if you look at the fudgy guidelines for 504's (most are built, or should be built) on the same procedural safeguards as an IEP), it's what you're in for at age 14 as well. 

judging from the recent tone, I still might have something to offer this board.  Some way to pave. 

Arkadia

It is almost a little comical how the school thought it was a great idea to put all the food allergic kids on one class this year.  :rotf:

<dryly>

why not? My daughter was reassigned to a bus for wheelchairs because she needed an aide to ride the bus (elopement risk) and, um, there was already an aide on that bus...a requirement for any bus with a wheelchair, in our district.

CMdeux

But, Ark-- would it be appropriate for a kindergarten student to be treated to the same management protocol?

Of course not.  Not developmentally appropriate.

It's a process.   


And I'd still argue that "school" has little in common with the "real world" as most independent adults know it:

Where else will you be grouped solely by age with a group of people you have virtually nothing else in common with?

Where else will you be forbidden to meet your own basic needs as you best see fit, and punished if you act on your own good judgement?

Arkadia

We all know that life isn't fair, tell me something I don't know.

It's about the law that is in place for children with any disability.

A lot of folks worked really hard to gain ground for these kids, kids (and parents) at an extreme disadvantage.

A lot of kids need these laws to meet their individual needs and to survive against  CRUEL SCHOOL PERSONNEL THAT DON'T UNDERSTAND.

No, it was about Gail's post and a LOVING PARENTS' CHOICES who DO UNDERSTAND.

PLEASE DON'T MINIMIZE THE IMPORTANCE OF THESE CHILDREN'S RIGHTS AND NEEDS.

I'd kindly also request we not get so dramatic and misconstrue what's being said.

No offense, please explain....I truly don't understand your point.

first the all caps.

second I wasn't addressing the initial post, but rather, gails.

third, you make it sound like most, if not all schools are "CRUEL" and get their jollies by deliberately hurting food allergic kids.

Anyone Speaking as someone who's neck deep in the IEP/special education process, I'd have to say there ARE an overwhelming number of very dedicated, however flawed, educators out there both in special education and mainstream who have made my children's education personal. Maybe more personal than I've ever made my patient's as a nurse. And I thank them for that. I won't spread the hysteria that educators are a bunch of S.O.B.'s, because I don't believe that (and haven't experienced it), even during the worst moments in the past with my district.

[ajasfolks2]

Begin pg 6

Cmdeux

Agreed.
They may be ignorant, or even misguided.

But most of them are still doing the job for all the right reasons.


Don't let a few bad apples spoil that impression.   

Arkadia

And I'd still argue that "school" has little in common with the "real world" as most independent adults know it:

Where else will you be grouped solely by age with a group of people you have virtually nothing else in common with?

that's but *one* aspect of the grouping, and otherwise, there is sooooooooo much else that is, in common, with the "real world". 

Speaking of, today, my oldest child is on a symphonic holiday band tour, each day, for the next three days, of several neighboring schools, and business establishments. How real world COOL!! is that?

I signed the permission slip, verified he'd be with a staff member's group, the medicine bag would be with a staff member, he packed his epipen, cell phone, and mini handcleaner this morning, and off he went. Oh, and "Don't eat anything that isn't in your lunch, under any circumstances."

I would have said "unless you know it's safe and read the label", but hey, he knows that at age 14, it's unspoken.  I didn't want to stress him out about something so everyday related to his allergy. He's been on auto pilot in that regard for a while, and I can't quite say, without a shove from the school now and then, that would have happened....entirely. Yet. Ever. 

I didn't even make a phone call this morning, or send an email.  Last communique' about two weeks ago, via email. Very brief. Additional badgering wouldn't have changed. a. thing.

Because really, it's his life, and it's in his hands when you get down to the boot straps of it.

But yeah, real world.  Almost Chicago Symphonyesque.

CMdeux

I'd also add that in the "real world" you can CHOOSE to go to a different restaurant if the one the bus stops at doesn't work for you personally... 


you also don't have your boss carrying your meds for you.  My guess is that even most college faculty would flatly LAUGH OUT LOUD at such a request.



In other words, yes, surely-- it is a transition to the real world...


but be careful making assumptions about just how "realistic" these things are.  Even teens are not yet "self-sufficient" either emotionally or physically.  They don't yet have maturity on their side.


Not completely, I mean. 

booandbrimom

Within the structure of the law each child's needs are individual.  To some degree, you have to sympathize that the schools are a little confused as to what fA parents want because it isn't all the same.  And I think, they think it should be.  Some of us like treat boxes and nut free tables and some of us hate em.  Some of us let our kids eat "may contains" and some don't let their kids eat anything not prepared at home. 

I just got back from volunteering at pizza day at my daughter's school. They had a huge tray of cookies for the kids after pizza, some of them macademia nut. The kids didn't get to pick which cookie they got since there were too many kids/not enough time.

One of the moms said "I need to go take a child a different cookie because they have a peanut allergy and got a nut one." I laughed and said "Oh, I don't think a peanut-allergic kid would eat any of these - all of them are potentially cross-contaminated." She gave me a REALLY dirty look and said "it's my daughter I'm talking about." Walked away with the chocolate chip cookie to give her.

She came back later and said she needed another cookie for another allergic child "but I don't really think she's allergic - I think she's just using it to get the cookie flavor she wants."

I found myself really, really angry and I was surprised by the emotion. Why did it matter to me whether she took a risk with her own child? (The other child was a different story, but again, the child thought she could have a cookie, so who was I to say no?)

Is this a better way to live? What would happen to these kids if they *did* eat a peanut? Do they have higher thresholds/less dramatic reactions? Or am I really the nutcase?

((sigh)) I'm so glad most of this is behind me now. High school feels like a breather - at least before he gets his license.

booandbrimom

I'd also add that in the "real world" you can CHOOSE to go to a different restaurant if the one the bus stops at doesn't work for you personally...

That's always been a really important difference to me. Adults can choose (for the most part) where and when they eat. They can choose whether to attend parties. But school is required.

Why are we fighting so hard to keep food in our classrooms and activities when it's detrimental to so many children?

hopechapel

no.  FA has taught me the good ole fashioned value of obedience.  The sign says please do not bring anything with nuts.  So the class mom brings a big cake covered with nuts.  Well -- the nut allergic child does not NEEED to eat it.  There are other treats....


But that should have been discussed beforehand.  When the saftey rule is no nuts. It is no nuts.  Must you think it out for yourself?


Obey the darned rule. 
obedience.

CMdeux

Reminds me of the time when my five year old and I were discussing 'learning disabilities;'  she thought very hard for a few minutes, and suggested that perhaps we needed to be more compassionate toward those "learning disabled" people that couldn't read those signs at the library.


You know-- the "no food or drink" signs.   




I had to point out that I didn't think it was a learning disability that was to blame for that.  Just self-indulgence run amok and a sense that the rules don't apply to ones self if you're sufficiently...  well, sufficiently something.   

Scout

I guess i really do have a good school, will count my blessings


6th grade son is having a international food festival Thurs. 

note:  No nuts allowed as we have too many students with allergies.

If your chosen dish has nuts in the recipe, choose another dish.

*I loved that wording.....

Ryansmom

Within the structure of the law each child's needs are individual.  To some degree, you have to sympathize that the schools are a little confused as to what fA parents want because it isn't all the same.  And I think, they think it should be.  Some of us like treat boxes and nut free tables and some of us hate em.  Some of us let our kids eat "may contains" and some don't let their kids eat anything not prepared at home.  I, personally, differ from most because I'd rather my kid eat something homemade from a careful mother than eat some packaged, processed junk even if it has a label.  The school has to begin from scratch with each parent and respect each parent.  And it does not make for easy policy making. 

Now that's what I'm talking 'bout!  I hate inconsistency.  Yet it's a fact of life with food allergy.  It makes policy making extremely difficult.  It's actually why I'm against a food allergy policy in school per se because the child, family and school environments, doctor's recommendation vary so widely from individual to individual.  My views are shaped on my personality, my son's personality, and my relationship with the school from the get-go. 

As for my own quote, that's why 504's are so diferent as well.  What's in our 504 is tailored to an individual.  It goes back to the original post.  Going back to the teacher's comment, there's a 50% chance I wouldn't care, and a 50% chance I would.  Depends on how it was said.  With the teachers my son has had?  No, it is very likely I wouldn't have cared.  Not to say that will hold true in the future.  Anything can happen.

Ra3chel

I'd also add that in the "real world" you can CHOOSE to go to a different restaurant if the one the bus stops at doesn't work for you personally... 


you also don't have your boss carrying your meds for you.  My guess is that even most college faculty would flatly LAUGH OUT LOUD at such a request.



In other words, yes, surely-- it is a transition to the real world...


but be careful making assumptions about just how "realistic" these things are.  Even teens are not yet "self-sufficient" either emotionally or physically.  They don't yet have maturity on their side.


Not completely, I mean. 

School is the real world--but, ideally, with a safety net. Where you can learn things and take risks while trusting that someone will catch you before you fall too far.

Or at least it should be. Too many times, that net's full of holes, or there aren't enough people to hold it up--or one of the people spotting is a well-meaning adult who thinks a kid'll learn more if they have a first-hand encounter with the concrete at the bottom.

At the same time, in the long term, this stuff is equally important for its impact on the kids who don't require accommodations. This is where they should be learning that there's nothing wrong with not getting the first, biggest, best, if it means that someone else can share in the good stuff too. To recognize that there are people and priorities outside of themselves. Compassion is an instinct, yes, but the ability to sustain it with grace is also very much a skill, and one very much worth cultivating.

CMdeux

I really don't think that most people are that evil.


They're just self-absorbed.

(And, in some cases, wilfully ignorant as long as it allows them to keep doing something that they WANT to do... or as long as they simply don't see that changing will 'make a difference.')


This is exactly why it took the civil rights movement and a hundred years to affect REAL change for African-Americans.  Was every white person in a southern city with Jim Crow laws "bad?"  Of course not.  They just couldn't see anything different.  It was more a matter of inertia.

Institutionalizing developmentally disabled children rather than being inclusive in their education is a similar-- and just as heartbreaking-- story. 

Arkadia

I keep coming back to this point though: it's not about fairness. It's about an equal education for all children.

and it's an education to learn the world isn't always going to be cookie cutter the same person to person, each and every time.

School does NOT equal the real world and should not be compared.

oh it certainly is preparation for the real world. Hell, my IEP process is NOW including Transition Planning, since my 14 year old man-child is um.....fourteen.
Transition Planning.  You might want to look it up. If you have an IEP, you need to understand it.

The IEP invite didn't come in a white envelope this time.  It came in a letter sized manilla envelope this time and additional paperwork related to Transition Planning.

Among the boxes checked regarding the "purpose of this conference" was:

"consider postsecondary goals and transition services (beginning at age 14 1/2. )"

If that isn't real world, I don't know what is.

You want to know what else was included? (rhetorical, since I'm telling you.)

A cover letter:

Dear Parents,

     Enclosed please find your copy of the invite to the high school meeting.  Your child will attend this meeting and all future meetings.  The meetings will take place at <Jr. High School Nam> in the conference room.  Also enclosed is a survey the high school would like you to complete and bring to the meeting.  A copy of your rights is included for your records.

...end excerpt.

bold added.

It's not optional. My child now unequivocally has a say in these meetings. Can over-rule my best intentions with no more than a preference, since, believe me, if the school prefers what he has to say, it will make ANY prior disagreements I've had with them regarding management styles and food allergies seem trivial.

Consequences be damned.

If that isn't "real world", I don't know what is.
But really, I'm all for him being at those meeings. He's attended IEP meetings before, but really, not for the nitty gritty parts.

and really, if you look at the fudgy guidelines for 504's (most are built, or should be built) on the same procedural safeguards as an IEP), it's what you're in for at age 14 as well. 

judging from the recent tone, I still might have something to offer this board.  Some way to pave. 

There is no place (that I know) in the real world (besides prison) that you has required attendance by law.

only if you're not going to do the job yourself.  Fah. That's a myth to me.  I withdrew my older son for TWO years and not a peep from the system.  They never documented ANYTHING. I never documented ANYTHING.

I really got the impression one has to be a complete %$#@-up to have my school district doublecheck your work. And I have a *good* school district. Blue-ribbon. Accolades galore.

[ajasfolks2]

Pg 6 continued

Arkadia

I'd also add that in the "real world" you can CHOOSE to go to a different restaurant if the one the bus stops at doesn't work for you personally... 


you also don't have your boss carrying your meds for you.  My guess is that even most college faculty would flatly LAUGH OUT LOUD at such a request.



In other words, yes, surely-- it is a transition to the real world...


but be careful making assumptions about just how "realistic" these things are.  Even teens are not yet "self-sufficient" either emotionally or physically.  They don't yet have maturity on their side.


Not completely, I mean. 

School is the real world--but, ideally, with a safety net. Where you can learn things and take risks while trusting that someone will catch you before you fall too far.

Don't count on it.

Don't count on it.

Ra3chel

I'd also add that in the "real world" you can CHOOSE to go to a different restaurant if the one the bus stops at doesn't work for you personally... 


you also don't have your boss carrying your meds for you.  My guess is that even most college faculty would flatly LAUGH OUT LOUD at such a request.



In other words, yes, surely-- it is a transition to the real world...


but be careful making assumptions about just how "realistic" these things are.  Even teens are not yet "self-sufficient" either emotionally or physically.  They don't yet have maturity on their side.


Not completely, I mean. 

School is the real world--but, ideally, with a safety net. Where you can learn things and take risks while trusting that someone will catch you before you fall too far.

Don't count on it.


Don't count on it.

See the paragraph that immediately followed the one you quoted. 

end pg 6

[ajasfolks2]

Begin Pg 7 original thread:

Arkadia

I really don't think that most people are that evil.


They're just self-absorbed.

(And, in some cases, wilfully ignorant as long as it allows them to keep doing something that they WANT to do... or as long as they simply don't see that changing will 'make a difference.')


This is exactly why it took the civil rights movement and a hundred years to affect REAL change for African-Americans.  Was every white person in a southern city with Jim Crow laws "bad?"  Of course not.  They just couldn't see anything different.  It was more a matter of inertia.

Institutionalizing developmentally disabled children rather than being inclusive in their education is a similar-- and just as heartbreaking-- story. 

Developing a self-defeatist, the world owes me, sit back and wait for it, sense of martyrdom isn't going to get you anywhere either.

CMdeux

I do think that it is wrong to sit back and ignore what I know is not RIGHT.

If I can see that something isn't right (in terms of basic human rights, that is), then I have to have a pretty compelling reason to keep quiet, YK?

Even if it is easier to rationalize why it's "really okay."

Certain things just... aren't.

Sometimes when you want things to be "fair" you have to be willing to fight to make it happen.  Even if it doesn't make a difference for you personally, that effort is not wasted.  It does matter to someone else that can use the groundwork you've laid.

lakeswimr

Arkadia,

I'm wondering if you would say what you think about this issue briefly. I know you post a lot but I'm seriously still confused what you think on this issue. I think sometimes you are using sarcasm but I can't tell for sure and I get confused about your meaning. It really doesn't matter but I'm just curious what your opinion all this topic is.

And just by the way--I'm not being snarky or sarcastic but serious in my question. I'm very curious and would love to hear your opinion in brief. (or be long about it but if you could just state what you think should happen/what you believe/would like rather than respond to specific posts here and there I think I would get a better picture of your opinion.

Thanks!

cya

I think we have to remember that Arkadia has a much older child. and while that offers valuable wisdom, what is done for a 14 1/2 yr old is not exactly relevant to an early elementary child.

Arkadia, I too cannot grasp your points because I see you contradicting yourself a lot.

Arkadia

I do think that it is wrong to sit back and ignore what I know is not RIGHT.

If I can see that something isn't right (in terms of basic human rights, that is), then I have to have a pretty compelling reason to keep quiet, YK?

Even if it is easier to rationalize why it's "really okay."

Certain things just... aren't.

Sometimes when you want things to be "fair" you have to be willing to fight to make it happen.  Even if it doesn't make a difference for you personally, that effort is not wasted.  It does matter to someone else that can use the groundwork you've laid.

Arkadia,

I'm wondering if you would say what you think about this issue briefly.  I know you post a lot but I'm seriously still confused what you think on this issue.  I think sometimes you are using sarcasm but I can't tell for sure and I get confused about your meaning.  It really doesn't matter but I'm just curious what your opinion all this topic is. 

And just by the way--I'm not being snarky or sarcastic but serious in my question.  I'm very curious and would love to hear your opinion in brief.  (or be long about it but if you could just state what you think should happen/what you believe/would like rather than respond to specific posts here and there I think I would get a better picture of your opinion.

Thanks!

well, I'm certainly not going to take someone seriously on how to pave the way and remediate moral ethical shortcomings whose child isn't even in a brick and mortar school.

My child's visibility has changed our school system profoundly.

Let me repeat:  My childrens' visibility has changed our school systme profoundly.  Not just within the realm of food allergies, but the Autism Spectrum. I take very little credit except to say it has, at times, the leap of faith, has bruised me to my very soul at times.

But I can say, with impunity and deliberateness, the accommodations we've worked with the district to implement has changed the landscape district-wide, for the better.

If you want an example, I'll start with full time school nurses.  Every building.  All day.  Every day.

And with glee, I'll also mention tutoring for children who show no signs of regression over break, spring, summer, or winter, and who make honor roll. It's a first in our district.

But really, catching on. 

Would you like other examples?

edit personal info.

cya

Clearly I would have a problem with a planed lesson or feild trip that he could not participate in but I still have a hard time seeing that eating a different treat is excluding my child. So long as he has something to eat with the others.

   

My problem with this system was that it failed many times.

- Kindergarten teacher (or Sub) didn't help DS get out his safe treat on a number of occasions, which was in HER storage closet. So I started sending it in his backpack, but she wasn't READING the note he gave her that explained that. He sat with nothing numerous times.

- Parents have passed out unsafe treats to my kids at parties. Numerous times. Those parties are chaotic, and unless you can attend to mitigate the risk, it WILL be risky for a LTFA child if there  are unsafe foods present.

- Some teachers "don't get involved in that". The Bday child passes out the treat, and gives one to everyone, including the 6 or 7yo LTFA child who has to decide for himself whether it's safe.

- My kids are very shy so they just weren't capable of being assertive about their LTFA (and bringing attention to themselves) when they saw unsafe food being passed out. The school staff thought it was a "success" that my child didn't eat it, and didn't have a reaction, but the child was breaking down at home ... basically just trying to survive the event, then get out of there. How FESTIVE! 

cya

A mom who has an older child with an allergy whose grade would not be participating in the feast threw a fit.  She complained to the principal about the feast, the turkeys, me and on and on.  The principal was caught in the middle between 2 allergy moms.

What was the other allergy mom's issue? The one that didn't even have a child in this grade?

Did you have to pay for the extra turkey breasts?

more . . .

[ajasfolks2]

Page 7 cont'd

Arkadia

And with glee, I'll also mention tutoring for children who show no signs of regression over break, spring, summer, or winter, and who make honor roll. It's a first in our district.

But really, catching on. 

let me clarify (bold):  Extended School Year.

lakeswimr

well, I'm certainly not going to take someone seriously on how to pave the way and remediate moral ethical shortcomings whose child isn't even in a brick and mortar school.

My child's visibility has changed our school system profoundly.

Let me repeat:  My childrens' visibility has changed our school systme profoundly.  Not just within the realm of food allergies, but the Autism Spectrum. I take very little credit except to say it has, at times, the leap of faith, has bruised me to my very soul at times.

But I can say, with impunity and deliberateness, the accommodations we've worked with the district to implement has changed the landscape district-wide, for the better.

If you want an example, I'll start with full time school nurses.  Every building.  All day.  Every day.

And with glee, I'll also mention tutoring for children who show no signs of regression over break, spring, summer, or winter, and who make honor roll. It's a first in our district.

But really, catching on. 

Although we did go to mediation for it and five other non-negotiable areas. And were awarded all. five.

Would you like other examples?

Arkadia,

I was talking about the topic of discussion in this thread which is treat boxes, parties and exclusion, etc.  It wasn't about the things you mentioned in your post--all fine things to talk about but not the topic of this thread.  So, yes, I would like it if you would state what you think about separate treats for FA children, food in classrooms, class parties, and exclusion related to all these things.

I only asked you one other time for your opinion and that time you started talking about what seemed *to me* unrelated. 

Arkadia

I think we have to remember that Arkadia has a much older child. and while that offers valuable wisdom, what is done for a 14 1/2 yr old is not exactly relevant to an early elementary child.

nonsense. I have a 3 1/2 year old in special education.  A ten year old too. pure nonsense.

And a 14 1/2 year old who also has an IEP for Autism in addition to any OHI.

Pure effing nonsense.

Arkadia

well, I'm certainly not going to take someone seriously on how to pave the way and remediate moral ethical shortcomings whose child isn't even in a brick and mortar school.

My child's visibility has changed our school system profoundly.

Let me repeat:  My childrens' visibility has changed our school systme profoundly.  Not just within the realm of food allergies, but the Autism Spectrum. I take very little credit except to say it has, at times, the leap of faith, has bruised me to my very soul at times.

But I can say, with impunity and deliberateness, the accommodations we've worked with the district to implement has changed the landscape district-wide, for the better.

If you want an example, I'll start with full time school nurses.  Every building.  All day.  Every day.

And with glee, I'll also mention tutoring for children who show no signs of regression over break, spring, summer, or winter, and who make honor roll. It's a first in our district.

But really, catching on. 

Would you like other examples?

Arkadia,

I was talking about the topic of discussion in this thread which is treat boxes, parties and exclusion, etc.  It wasn't about the things you mentioned in your post--all fine things to talk about but not the topic of this thread.  So, yes, I would like it if you would state what you think about separate treats for FA children, food in classrooms, class parties, and exclusion related to all these things.

I only asked you one other time for your opinion and that time you started talking about what seemed *to me* unrelated. 

My opinion?  Live by the sword, die by it. I can see both sides. I struggle for balance. And that's how it will be.  Don't fool yourself.

CMdeux

well, I'm certainly not going to take someone seriously on how to pave the way and remediate moral ethical shortcomings whose child isn't even in a brick and mortar school...

Said as only someone who hasn't walked in these particular shoes would.






My family has improved things for kids in our state.  And nationally, too-- for a total population of many thousands of students.   No exaggeration, again.

I have managed to do that so that there is REAL inclusion and understanding of how LTFA is a disabling condition in one of the two largest public cyberschools in the US.  I have worked with leadership for both of the cyberschools operating public charter schools within my state; and I have on occasion coordinated my efforts with others to be more effective.

  I don't think that anyone should think dismissively of that just because I did it without throwing my child into a situation that was likely to cause her physical harm.  I had the option to do otherwise-- and I took it.  I'd have been a fool not to.

  I am proud of what my daughter's school has accomplished given where they started four years ago.  And like Gail, I did it through sheer, relentless, dragging them inch-by-inch, meeting-after-mind-numbing-meeting, year-after-year... staying on message.  Marshalling resources and never giving up.  Velvet hammer style.

I did that.  Me.   

Now things that "couldn't be done" are done.  Routinely-- and GRACIOUSLY.  That doesn't just benefit MY child.  They are thinking INCLUSIVELY now-- about ALL disabled students. 

In addition, there are several state (and federal) legislators that know my family by name and by sight.  They know that I'll go to the mat for what I believe is right; and they also know that I'm reasonable and well-spoken.  We're likable and appealingly normal-- definitely not fruitcake material.

I can afford to be those things precisely because I don't have to be reactionary and freaked out.  Having my daughter's immediate safety never in question means that.  I don't apologize for that for an instant.  I have also taught my daughter that she has a voice-- and that SHE can make a difference with that voice.  Sometimes.  (And that sometimes, the price will be too high--choose wisely.)

There are a lot of families in my state (and others) that will never know how we have helped them.  I'm fine with that-- because I know it.

There is value in knowing where and when one can make a difference-- and when one CANNOT afford the price that will need be exacted in order to prove that point.

It won't matter to me if a state law mandating a nurse in every school has my dead child's name attached to it.  Speaking bluntly;  you don't know my state and the politics therein.  Trust me when I say that is precisely what it would take-- and even that might not be enough.

My child is in a public school.  Just to be clear.

cya

Just callin' it like I see it.

Arkadia

well, I'm certainly not going to take someone seriously on how to pave the way and remediate moral ethical shortcomings whose child isn't even in a brick and mortar school...

Said as only someone who hasn't walked in these particular shoes would.

nonsense.

cont'd . . .

[ajasfolks2]

Page 7, cont'd

lakeswimr

well, I'm certainly not going to take someone seriously on how to pave the way and remediate moral ethical shortcomings whose child isn't even in a brick and mortar school.

My child's visibility has changed our school system profoundly.

Let me repeat:  My childrens' visibility has changed our school systme profoundly.  Not just within the realm of food allergies, but the Autism Spectrum. I take very little credit except to say it has, at times, the leap of faith, has bruised me to my very soul at times.

But I can say, with impunity and deliberateness, the accommodations we've worked with the district to implement has changed the landscape district-wide, for the better.

If you want an example, I'll start with full time school nurses.  Every building.  All day.  Every day.

And with glee, I'll also mention tutoring for children who show no signs of regression over break, spring, summer, or winter, and who make honor roll. It's a first in our district.

But really, catching on. 

Although we did go to mediation for it and five other non-negotiable areas. And were awarded all. five.

Would you like other examples?

Arkadia,

I was talking about the topic of discussion in this thread which is treat boxes, parties and exclusion, etc.  It wasn't about the things you mentioned in your post--all fine things to talk about but not the topic of this thread.  So, yes, I would like it if you would state what you think about separate treats for FA children, food in classrooms, class parties, and exclusion related to all these things.

I only asked you one other time for your opinion and that time you started talking about what seemed *to me* unrelated. 

My opinion?  Live by the sword, die by it. I can see both sides. I struggle for balance. And that's how it will be.  Don't fool yourself.

Well, I'm actually a person very interested in your opinion because you seem very bright and also like you are an original thinker, a solid critical thinker, but what you posted here isn't enough for me to get what you think on these issues.  The only two sentences that give my any idea of what you think are 'I can see both sides.' and 'I struggle for balance.'  That's it.  I would be interested in reading more if you would care to elaborate.  Again, no sarcasm or snark here. 

End page 7. 

[ajasfolks2]

Begin pg 8, original thread

CMdeux

well, I'm certainly not going to take someone seriously on how to pave the way and remediate moral ethical shortcomings whose child isn't even in a brick and mortar school...

Said as only someone who hasn't walked in these particular shoes would.

nonsense.

Fine.   Then explain how working with a virtual public school

"doesn't count."

Or perhaps you could share your expertise in doing so. 

Ryansmom

I'd also add that in the "real world" you can CHOOSE to go to a different restaurant if the one the bus stops at doesn't work for you personally... 


you also don't have your boss carrying your meds for you.  My guess is that even most college faculty would flatly LAUGH OUT LOUD at such a request.



In other words, yes, surely-- it is a transition to the real world...


but be careful making assumptions about just how "realistic" these things are.  Even teens are not yet "self-sufficient" either emotionally or physically.  They don't yet have maturity on their side.


Not completely, I mean. 

School is the real world--but, ideally, with a safety net. Where you can learn things and take risks while trusting that someone will catch you before you fall too far.

Don't count on it.


Don't count on it.

See the paragraph that immediately followed the one you quoted. 

No, don't count on it.  Sometimes yes, sometimes no.  And it really depends on the parents.  The squeaky wheels are the ones that get heard.  Usually.  As a former high school teacher who had many special ed students in a regular ed class, let me tell you, this is absolutely true from my background.

McCobbre

well, I'm certainly not going to take someone seriously on how to pave the way and remediate moral ethical shortcomings whose child isn't even in a brick and mortar school...

Said as only someone who hasn't walked in these particular shoes would.

nonsense.

Am utterly astonished at your first statement here Arkadia.  Truly.  There are likely few families represented on this board who have gone to the lengths that CM's family has for advocacy on a state level--which also impacted her DD's school in the most fundamental way.

Really, there's no point in discounting a member's experience in advocacy. 

And for the record, not to get too off topic, I am sooooo glad they are not in a brick and mortar school. I like the fact that her DD is alive and well.  And so does my son, TYVM. 

Arkadia

well, I'm certainly not going to take someone seriously on how to pave the way and remediate moral ethical shortcomings whose child isn't even in a brick and mortar school...

Said as only someone who hasn't walked in these particular shoes would.

nonsense.

Am utterly astonished at your first statement here Arkadia.  Truly.  There are likely few families represented on this board who have gone to the lengths that CM's family has for advocacy on a state level--which also impacted her DD's school in the most fundamental way.

oh, and wt% was this?:

Code Select Expand


I do think that it is wrong to sit back and ignore what I know is not RIGHT.

If I can see that something isn't right (in terms of basic human rights, that is), then I have to have a pretty compelling reason to keep quiet, YK?

Even if it is easier to rationalize why it's "really okay."

Certain things just... aren't.

Sometimes when you want things to be "fair" you have to be willing to fight to make it happen. Even if it doesn't make a difference for you personally, that effort is not wasted. It does matter to someone else that can use the groundwork you've laid.


as if I've rationalized any what "I know is RIGHT" away.

as if I'm not willing to fight for it.

Come. On. You BOTH know better than that, and it was the epitomy of insults in this exchange. Own it.

Don't try to flip this.

It's beneath you both.
What she said was "utterly astonishing".



But really, totally ignore it McC.

Can I just say eeeeeeww? I mean, I could never personally ignore something like that if I was going to start pointing fingers.

Arkadia

And for your information, it was the "state level" we invoked when we went to mediation.  We actually went through with it.

The super, the principal, and directors of both district special education and director of that director/cooperative wide special education were there.  And my child actually had to show up in school directly thereafter. And I believe that took more guts than what I, CM or yourself have had for whatever else.

CMdeux

I give up.   

Done.

CMdeux

Let me note here that I'd like to continue making this a productive discussion, but I am not in the mood to be Ark's personal punching bag.  Had enough.

PM if you need anything.

McCobbre

Hey--I'm not the one trying to make it into a contest.  We don't need oneupsmanship around here.  But the fact that some of our kids aren't at b/m schools doesn't mean their advocacy is any less--or less work frankly.

Egads.  I am not even sure what "own it" means here. 

But NN4M is right -- we may have different opinions on this issue, but knowing we've got support here is what helps us individually and as a community. 

hopechapel

We're likable and appealingly normal-- definitely not fruitcake material.

This is why God just gave me the wrong job with food allergic kid.  How do us fringier types pull this off?  Hard enough for me to fit in without a leg-breaking peanut-allergic (but cute and smart) kid to advocate for.  And then I wisk away their walnut cakes...

and what hope is there when my YAVIS friend with FA kids gets shunned too?  I geuss everyday I should try to pull together normal so I can fight for my son to have semblance of normal. Keeping in mind that if I do pull it off (normal) it may reap me nothing. In addition to normal must work on thin skin.  And advocate. Now, are we advocating for safe treats for all, treat boxes, or no treats? Or for sub. teachers to keep their big mouths shut.  Which is what I vote for. I resent other people chiming in to teach my child about FA.  I think my kid would not mind the dum dum if it came without a "lesson" JMO.

lakeswimr

And now I lose my interest in your position, Arkadia, because you don't answer my questions and instead would rather have the type of discussion you are having with others. So, that says, *to me*, that you don't care about having a genuine talk about this particular topic but rather that your interest is the type of back and forth you just had with others. Oh, well.

booandbrimom

I resent other people chiming in to teach my child about FA.  I think my kid would not mind the dum dum if it came without a "lesson" JMO.

See...that's why my very first post in this thread said that I would have to *sue* if I wanted the food out of my child's classroom. (Not slamming you, Hope...just saying that this is what it would take.) I think the law would have been on my side.

It's going to take a mom though who is willing to recognize that no one will support her...even other moms of food-allergic kids. I wasn't willing to go there. In retrospect, I would do it, knowing what I know now.

Ryansmom

Hey.  Forget the tea and cookies this morning.  It's tea and BOXING GLOVES!

Let's not forget this is not a one-upmanship contest on who does more for advocacy, and who has gone higher. 

I, for one, am not insulted when members in this thread do not agree with me, perhaps thinking maybe I haven't done enough for my child.  Perhaps that I'm not facing up to "exlusion".  Some do not realize the countless hours of hard work and research, the year of prep before Kindergarten, the countless hours of educating others, the trailblazing efforts in district, the fact that my son's 504 was used as a major tool in our district's crafting a Food Allergy Policy (one I wasn't aware of, nor one that I cannot give my full support, too, depending on how it used).  The fact cannot be ignored that my efforts have produced a 504 that has been consistent with state regs from this past summer handed down to school districts.  We have been 9 years ahead of the game, as told to me by the person developing the Food Allergy Policy in our district.

Some do not know where I was nor where I've been.  Virtually all do not know the easy going nature of my child.  They do not know me.  A wolf in sheep's clothing if necessary.  If my child's 504 was being violated, I DO something about it.  And I have.  Exclusion and Inclusion can be a fine line.  The school makes accommodations, I make accommodations, Ryan makes accomodations.  It IS a team effort, *AT LEAST IN OUR CASE*.  My son has rarely felt excluded because of his PN/TN allergies.   

I understand crappy districts, sh***y administrators, teachers who suck (to be blunt), and your kids who are still grappling with coping skills due to their age.  Some of you deal with a daily hell in regard to FAs.  For you that face this, I learn from you.  Ryan's education is not over.  We may never face this, we may face it tomorrow. 

If we can hold true to empathy, compassion, understanding, and respect, we'll do our community justice.  And be able to take off those boxing gloves.  And get back to tea and cookies.

hopechapel

Yes you cannot ban insensitive people.  Take the food away and you've taken the wind out of their sails...

Now my Kindergarten teacher thought it a good idea to teach a class of twelve the peanut butter and jelly song and feature it at a presentation to the parents.  She also placed a bowl or Reese's cups on the table at the parent/teacher conference. 

I can't complain about a song - ban peanuts and the songs about them! But it sure did not endear her to me.

And she wasn't serving the R cups to the kids ... but this was her friendly offer to the parents. What kind of message did that send about peanuts in the classroom? 

FACE IT. School and the world is peopled with the un self-examined. 

Take away the cupcakes and it may be better and safer but the wierdo food stuff will still be flying.

And this is the best teacher we have had to date.

Arkadia

Totally ignore it was you who threw a totally sh***y cheap shot accusing ME of ignoring moral ethical conscience aka what we "know is right" and rationaliizing .  Whose the punching bag here?

Let me note here that I'd like to continue making this a productive discussion, but I am not in the mood to be Ark's personal punching bag.  Had enough.

PM if you need anything.

Arkadia

Ithought I answered your question quote clearly that I believe a parent who would approve it for their own child shouldn't be villainized but if you list direct questions ill answer later when ly internet is back u and I don't have to.  Use a touchscreen cell phone to type.hate it big thumbs.

And now I lose my interest in your position, Arkadia, because you don't answer my questions and instead would rather have the type of discussion you are having with others.  So, that says, *to me*, that you don't care about having a genuine talk about this particular topic but rather that your interest is the type of back and forth you just had with others.  Oh, well. 

End page 8
(whew!)