Why even bother?

Posted on: Tue, 05/18/2004 - 4:37am
tcperrine's picture
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First let me say that I am not trying to anger anyone, or demean anyone's choices. But I have sat here for an hour or more and read story after story about parents putting extra time into schools to keep their PA kid safe. They are aides, food monitors, epi-pen trainers, kindergarten PAL presenters, cooks, bakers, cheerleaders for teachers - they buy wipes, countless amounts of food, send personal letters of thanks, attend dozens of meetings etc., etc. Some of you said you spend most of the day at school.

WHY!?!?!

Why would you subject your child to teachers who do not care, kids that terrorize, tables alone in the cafeteria, busses with peanut smeared on seats, field trips that may end up in the ER, etc., etc.

Why let your child be the guinea pig and help your district design an allergy policy? What if it fails?

Why insist on a 504 when the school says they won't do one? If you finally get it in place, how confident are you that they will follow it? So what if it is a legal document. I have no desire to visit a courtroom for vengeance after I visit the morgue.

I am trying to get my mind around what positive experience school can provide for a child with life-threatening allergies. I can think of very few. None that can't be duplicated by alternative methods.

I am asking this in hopes of understanding why I am UNABLE and UNWILLING to do any of the above. Is it just comfort zones? It definitely isn't energy level - because it sounds like keeping your children in school is a WHOLE lot more draining than keeping mine out. I don't mean for this to sound like an attack (yet I know that it does) but after reading all your posts - I am exhausted FOR you!

Carolyn

[This message has been edited by tcperrine (edited May 18, 2004).]

Posted on: Tue, 05/18/2004 - 5:17am
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My son is not in school yet, but I have read numerous posts in this folder, as aides to help me prepare and what processes others have taken to ensure the saftey of their children in school.
Maybe I am reading btw the lines, maybe not. But is the basis of this post to open the door for a conversation of home schooling vs public/private schooling?

Posted on: Tue, 05/18/2004 - 5:25am
tcperrine's picture
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Quote:Originally posted by CorinneM1:
[b]I have read numerous posts in this folder, as aides to help me prepare and what processes others have taken to ensure the saftey of their children in school.[/b]
EXACTLY! Whew! What a mess most people go through! A terrifying prospect for those of us with toddlers or preschoolers.
Quote:[b]Maybe I am reading btw the lines, maybe not. But is the basis of this post to open the door for a conversation of home schooling vs public/private schooling?[/b]
Sort of. I mean, homeschoolers will tell you it is great for a number of reasons. I guess I'm looking for a discussion less on why homeschooling is great (as some will insist) and more on why public schooling (with all the troubles encountered) is worth it. Does that make sense?
Carolyn

Posted on: Tue, 05/18/2004 - 5:36am
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Carolyn, I do understand what you are asking. I definitely agree that if I were planning to send my daughter to a public school and I got a difficult response from the school I would have real concerns with sending my daughter there. I would have trouble trusting that they would do the right thing.
However, I have a lot of admiration for those who do fight that fight. Even if the initial fight is difficult, they can pave the road for those who come after them. I decided not to fight the fight. The public school nurse seemed very accomodating when I spoke to her, and I think I could have gotten a peanut free classroom without too much difficuly. But we really wanted to have DD in a completely peanut free environment, and to me that means the whole school, not just one room of many. We decided on a private school that is peanut free.
As to homeschooling, there are many parents who are not financially able to quit a job and stay home. And in my case, I have seen the difference in the way my daughter takes intruction from me and the way she takes it from her teacher. If I were homeschooling there is no way she would be reading at the level she is now in her kindergarten class. At this point she is truly getting a better education in a school than she would at home.
Bottom line, each situation is unique.

Posted on: Tue, 05/18/2004 - 9:48am
Sandra Y's picture
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Not everybody who sends their kids to school puts that much effort and time into it. The people who are spending lots of time doing school-related stuff are probably posting more about it because they are looking to share ideas, get input, etc.
I know what you mean about not understanding why someone would put themselves through all that trouble. But the way I look at it, everyone likes to do different things. There are mothers who love PTA/ fundraising/ volunteering at school and I HATE that stuff, but some women have it as the central focus of their lives while their kids are young.
I think for some people who have an activist streak, who enjoy interacting with schools and making a difference and contributing to a good cause, working for a peanut-safe school is something that gives them satisfaction. Every time I have to go to school and talk about PA it's like I'm going in for oral surgery and I have to force myself to do it. But even if it's difficult and sometimes frustrating for them, I think there are people who feel a sense of accomplishment from making that improvement in the schools.
And they are making a valuable contribution, since there are many PA kids from families who can't advocate for them. Imagine a PA kid who is an immigrant or from a dysfunctional family--they will benefit from the policies put in place by others.
My PA son goes to school but I have never had to do much to get him the environment he needs. A few problems have cropped up along the way, but I think it hasn't been unreasonable.
Homeschooling is great. I'm all for it. I've read quite a bit about it and I regularly visit homeschooling sites. I especially like unschooling, which my brother's family does. I don't want to do it, but anyone who chooses homeschooling has my enthusiastic support.

Posted on: Tue, 05/18/2004 - 10:53pm
Kay B's picture
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Well, I agree and disagree with the whole objection. I went through the whole wringer myself, with stacks of information for the school personnel, videos, training, volunteerisim, etc. etc. and got endless grief over it. I was ground down by the stonewalling, exclusion, meanness, ignorance, parental objections, ever-present danger and I now homeschool.
BUT I have huge respect for those stronger and braver than I am that can break trail for people like me. I once filed a federal complaint against our local government's parks and rec because they wouldn't allow my daughter to participate in a preschool program without me present (with a newborn too, mind you.) It was a policy designed to screen out health impaired kids, of course. The Federal gov. came out and basically smacked 'em upside the head, and I hear they are now "great" about epipen kids. (GGG) So in that case, I broke trail for every epipen kid to attend those programs with a reasonable sense of safety and preparedness.
I wish someone had been able to do that about my daughter's school.
I'd like to clear something up about the 504, though -- it's not so you can sue after your child is injured or killed at school. It's so that you have the power to say "If you do not safeguard my child as set forth in this document I can inform the government, who can then withhold your millions of dollars in Federal assistance because you are failing to provide a free and appropriate education regardless of disability, as you are charged with doing."
I would be very grateful if someone would hold my school district's feet to the fire in this way and make them live up to the laws mandated by the government. Homeschooling can't be done by everyone, yet I believe my school district deliberately forces people into it. It's illegal, immoral and unethical, yet they get away with it.
Kay

Posted on: Tue, 05/18/2004 - 11:48pm
CorinneM1's picture
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Speaking for one that is putting little or not effort into it (as of yet), I posted the the private school by my house has been peanut/nut free for a few years now, and have a full time nurse on staff. Lists are given to the parents at the beginning of the school year with items that the children can/can't bring in for lunches and/or treats. All hot lunches are prepared to be nut free.
Knowing this walking in the door, I am a little more at ease, and don't anticipate having to put much more work into the policy. But will suggest or request modifications if I am not pleased. But I think and hope that I will be.

Posted on: Wed, 05/19/2004 - 12:26am
Anonymous's picture
Anonymous (not verified)

tcperrine, well, I'm not even sure what I have to add to this discussion. Some really wonderful points have been made.
Basically, I felt it was my PA child's *right* (which it is) to attend public school in relative safety.
Personally, for me, I could not homeschool. I know that others here have told me that yes, I probably could, but I am so disorganized about life in general, I know that I couldn't.
And why should I, again, when my child has the *right* to go to school?
Through the years, yes, I have done a lot of bang head brick, bang head brick. My son is now in his fifth year of school and I must say, it does seem to change each year. My biggest difficulty and upset is that we move all the time and my children change schools. I believe if he was still attending the original school he started out in, which I did break ground with the principal in helping make it a "reduce the risk" school, then things would be quite different.
Because we change schools each year (or have for the last three years and possibly again next year), yes, it has been difficult. I didn't anticipate that I was going to become Nomad Woman in this life. [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img]
JK/SK and Grade One were great for my son in two different school districts in our province. Yes, I did do education. Yes, I did have some difficulties.
Grades Two and Three have been a lot more trying.
But see, again, it goes back to not my son's PA, but the fact that we move a lot. I wish I was able to offer my children what I had as a child - a home where I knew what elementary, junior and high school I would be attending because we would NOT be moving. Sadly, that isn't the case for my family right now.
I enjoyed "paving the way" when we were in our previous town. It actually did help the PA children that followed my son, who was the first PA child in the school there.
Now that he's getting older, I assess field trips and decide whether or not they're "high risk" and whether or not I need/want to attend. For example, this coming month he is going to a mushroom farm. Probably pretty "low risk" and he could go without me, but I'm thinking, okay, right now I'm in a position to go with him (I'm a SAHM) and I've never been to a mushroom farm.
On the other hand, they're also going to another place where I swear, both children have been over ten times in the three years that we've been here. I probably won't go, but have to assess the situation because it is out in the wild (if you will), not close to the hospital, etc.
They also have a trip planned to The Toronto Zoo and I consider that more "high risk" as well.
I do understand from other parents here that it is important to participate on The Parent Council and be involved in volunteering at the school. I'm not in a position to do that and yes, that may have not helped the school community (particularly this one) understand about PA.
There is one other PA child at my son's school and I notice that his parents are even less active in the school community than I am. So, you really don't have to be there all the time.
I like what a LOT of people posted about the pros and cons because it certainly is an interesting discussion, but for me, it wasn't something I was exploring (homeschooling) because I'd rather fight for my son's rights than homeschool both of my children.
Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
------------------

Posted on: Wed, 05/19/2004 - 1:39am
Anonymous's picture
Anonymous (not verified)

Quote:Originally posted by tcperrine:
[b]Why let your child be the guinea pig and help your district design an allergy policy? What if it fails?
[/b]
I'm really rushed and (sorry) don't have time to read all the responses, but I really want to comment on this one line.
I don't have a pa child. I've been dealing with pa since before a lot of the children from this site were born. And I've been phoning manufacturers a lot of years. Sending letters. I even went through a period of being a guinea pig at the hospital once - simply because the doctor said that although it wouldn't help me it might one day help someone else.
If nobody fights for rights, complains, [b]fights[/b] we would not have safe labelling on any products. We would not be able to ask any airline to leave the peanuts on the ground.
Sometimes it's a *bigger picture* combined with what a parent feels is best for their child and their child's personal situation.

Posted on: Wed, 05/19/2004 - 2:43am
tcperrine's picture
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Wow! I want to say thank you for all the great responses AND for reading my post in the spirit it was intended. Any anger that came across was for our collective situations.
I guess I am just not a crusader. I know that fighting the good fight paves the way for others, but I am too chicken. So, for all you out there banging your heads against the wall - I say thank you...and I'll be here with bandages when you need them. ;D
Carolyn

Posted on: Wed, 05/19/2004 - 2:55am
Artanis's picture
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I wonder this too. Institutionalized schooling is starting to seem like a whole lot of work for very little in return. My allergic child is not in insitutionalized schooling yet but the thought terrifies me. Too much is depending on chance and the hope that teachers and little kids will be kind and thoughtful. I remember my teachers and classmates and they were usually NOT kind and thoughtful. Especially the classmates. Then there is the odd bully thrown in, the one no one does anything about, who would find it funny to expose my allergic child to a peanut.

Posted on: Wed, 05/19/2004 - 3:27am
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Sue
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Carolyn,
You have asked some very good questions. We do send our ten-year-old daughter to public school. I appreciate your post. The things you ask about are things we think about most every day.
We have had so many ups and downs with the school. There are some WONDERFUL people at our daughter's school. There are, also, the ones that don't get it or don't want to be inconvenienced
Our family walks a fine line on the issue of sending her to school. Our daughter has FAS (fetal alcohol syndrome), is ADHD to the max, she has OCD - the list does go on. She is adopted (more issues to deal with) and she is our precious little girl. She has taught us so much about life and living it to the fullest.
One of the things she has taught us is that she has to have peer interaction if she is to make it in "the real world". She thrives when she has friend that accepts her. She gets great acceptance from the boys in her classroom. Maybe they accept her because she is very athletic?
A fair amount of the girls seem to avoid her. For example - yesterday (while we were waiting for the school bus) my daughter told me that she tried to talk to one of the girls in her classroom. The girl told her that she was a perverted, sick headed freak and not to speak to her because she doesn't talk "dork". This broke my heart. Yes, I did wait until my daughter was on the school bus before I cried.
She has a very difficult time reading social cues and social space. She is behind her peers in emotional maturity by about a year and yet academically she gets a report card full of A's and B's. She is in the 4th grade and has an 8th grade reading level. BTW, the teacher loves our little girl - she says she is kind, sharing, smart, gentle and funny.
I am sure I have told you more than you wanted to know (tee hee). So I guess what I am trying to say is, based on the over-all picture, we are trying to balance her health needs and her emotional needs. It is not easy sending her to school.
Our wonderful and caring school nurse is the main reason that we can send our daughter to school. Everyone of her teachers have been wonderful with her. Every teacher she has had has been her "favorite" and she gets real sad and cries the last day of school! This helps me know that I am doing the right thing (I think ... maybe .. most of the time .... Tee Hee)
So again, thank you for your questions - they help me think about the balancing act our family must deal with. And the choices we continue to make for our daughter.
Are we doing the right thing? I hope so. I do know that I am doing the best I can.
Sue in Sunny Arizona

Posted on: Wed, 05/19/2004 - 3:34am
FromTheSouth's picture
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I have enjoyed reading these honest and non-resentful posts about the efforts involved in 504 plans and dealing with schools. I think the point about the personality of the parent very interesting, something I had not considered. I have been reading for years on this site the frustrations, problems that parents here have faced. I've been amazed how much time/effort/stress is involved. I admire those who have worked so hard to make a school safe for their dc. Academically they truly must be good schools worth fighting for.
As my dc seems to be the "only" student the "six" schools I have tried to work with have ever known to be airborne/casual contact allergic, I'm not sure my fighting tooth and nail to establish a 504 plan and the constant monitoring to make sure it was being upheld would pave the road for future p.a. students. Even though there is more food allergy awareness in our society, it comes down to a good school cares about each individual child's needs but my general impression of most schools' mission is to educate the masses (majority rules). Public schools especially are tied down with so much bureaucratic red tape it is mind boggling.
I even had an allergy doc. (who was on our local school board) tell me he couldn't work with me to make the school safe because the Superintendent of Schools told him not to have any contact with me. Yes, I called him to ask for his help and he agreed to contact the school but decided to check with the Superintendent first (without telling me). He later admitted the Superintendent was more concerned about ticking off parents if their child had restrictions on nut products at school than the rights of my child. The public schools here do not have a good reputation so after touring the schools and talking with the teachers (who also seemed to want to protect their status quo) for us the effort and stress on our family and my dc didn't seem worth the effort. We have been h.s.ing for 6 years but evaluate our school options each year. Are doing that very thing right now.
I don't think many schools are afraid of lawsuits for not adhering to 504 plans. They know it is a long, expensive, difficult process to sue.

Posted on: Wed, 05/19/2004 - 5:08am
SeaHint's picture
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Alternative to Mainstream : if, as you say, you have "nothing to add", then WHY post??

Posted on: Wed, 05/19/2004 - 7:36am
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Quote:Originally posted by SeaHint:
[b]Alternative to Mainstream : if, as you say, you have "nothing to add", then WHY post??[/b]
She did add something. If you don't like what you're reading, don't read it.

Posted on: Wed, 05/19/2004 - 7:58am
Anonymous's picture
Anonymous (not verified)

momma2boys, thank-you. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
I couldn't figure out where that comment came from because what I actually said was:-
I'm not even sure what I have to add to this discussion. Some really wonderful points have been made.
So, I was saying I wasn't sure if I had anything to add, not that I had NOTHING to add and simply because such wonderful points had already been made.
However, in reading responses after my post, it would appear to me, reading, that what I did end up adding to the discussion was useful if for discussion purposes only.
SeaHint, I don't know what the problem is and really honestly, don't care. If you don't like my posts, don't read them.
momma2boys, thank-you again. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] I wasn't going to say anything - even to clarify the wording, I was just going to sit here, shake my head and go WTF, a feeling I thought had passed on this board for me a couple of weeks ago (although I recognize it does return [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img] ).
Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
------------------

Posted on: Wed, 05/19/2004 - 11:15am
momma2boys's picture
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Quote:Originally posted by Alternative to Mainstream:
[b]momma2boys, thank-you. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
I couldn't figure out where that comment came from because what I actually said was:-
I'm not even sure what I have to add to this discussion. Some really wonderful points have been made.
So, I was saying I wasn't sure if I had anything to add, not that I had NOTHING to add and simply because such wonderful points had already been made.
However, in reading responses after my post, it would appear to me, reading, that what I did end up adding to the discussion was useful if for discussion purposes only.
SeaHint, I don't know what the problem is and really honestly, don't care. If you don't like my posts, don't read them.
momma2boys, thank-you again. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] I wasn't going to say anything - even to clarify the wording, I was just going to sit here, shake my head and go WTF, a feeling I thought had passed on this board for me a couple of weeks ago (although I recognize it does return [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img] ).
Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
[/b]
No problem [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] , and I see no reason why you should have to clarify your wording here.

Posted on: Wed, 05/19/2004 - 11:38am
Scooby's picture
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Why even bother you ask. The answer is simple. This is what DH and I signed onto when we decided to have children.
We didn't know if our kids would be healthy, or if they weren't , what type of disability to expect. Or what to expect for their future. An aquaitence of mine lost her 5 year old to cancer. It was a sudden diagnoses and he did not respond well to treatment. So who knows what cards you can be dealt in life.
All we knew was that we wanted a certain type of lifestyle for ourselves and our children. Something akin to what we had experienced ourselves.
So my DS is now finishing first grade. Successfully I might add. The school has been great. The teacher and parents have been very more than helpful. We have a full time and part time nurse who have done a tremendous job in watching out for him.
And I did not go to heroic extremes.

Posted on: Wed, 05/19/2004 - 12:01pm
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My son is only 2 and has both the peanut allergy and type 1 diabetes just diagnosed with both since March of this year. I went to a homeschooling question and answer session last night just to get some idea of what homeschooling is like in my area and what resources are there. I live near Washington, DC so lots of resources and it made the whole idea of homeschooling look exciting actually. There is so much you can do with it. I have another son (non- allergic) and he is in 1st grade and he does well but I see how much he has learned and what kind of kids he is exposed to and I think I could do that well teaching him myself - or better. And there are so many socialization groups for homeschoolers in my area that is not a problem either.
I've also seen how things go in our local public school and it does not make me comfortable. It will be a long ordeal with them I think because they really have no peanut policy in place (amazing really considering where we live!). I'll have to learn more the next 4 years and see what happens but I want to be prepared to go either route. In just "thinking" about it now...the homeschool option seems far less stressful and has many benefits.
It would not be possible if I was not a stay at home mom however - and many moms with PA kids are not I'm sure...even if they want to stay home they need to work.
Carol

Posted on: Thu, 05/20/2004 - 1:39am
KarenH's picture
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Joined: 09/21/2002 - 09:00

I think this question can apply to children with any sort of difficulty that schools would have to accomodate.
I don't go to extremes in my son's school. I can't. I work at a school about 50 km away, during the same hours. So any hope of volunteering is gone because I'm always working during school hours. I keep in touch with the school, and make sure that I stay on top of things that come home. I would LOVE to be the sort of Mom that can help out with the hot lunch days, read with kids, etc. I didn't plan on being a working Mom, it just happened that way. I think that some members of this board do it because they love it, and want to be involved so that they know what's going on, they aren't just having to trust that what the school is telling them. Schools aren't always honest-and also if you are there, they are likely more on their toes.
As for us and homeschooling....well it looked like a good option way back in November. We were furious that ds's school wasn't accomodating him and his learning disabilities. He has the right to attend school and get an appropriate education. However, homeschooling wasn't really an option at the time either. So we fought the school, and now things are much much better.
I think that you have to decide what works best for you and your children. I would prefer not to teach my son, since he is very strong willed and we would likely drive each other nutso. It would be a last resort. You could do what my sister did...send them to school for a bit to try it out, and try homeschooling for a bit too. She's done both. I don't think that any one is better then the other, it really just depends on your children, the school in question, and you. Even at a fantastic school you can get some pretty horrible teachers, or vice versa.

Posted on: Thu, 05/20/2004 - 3:35am
Kay B's picture
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Joined: 12/30/2002 - 09:00

Fromthesouth,
I agree that schools are not afraid of being sued. It is almost impossible to sue a school and there is very little redress if you do. BUT that is a different matter than a civil rights complaint. If you file a civil rights complaint (which is what I believe you do with a 504, and which I have done without one) it is free, easy (just a form to fill out) and WILL be assigned a case number, WILL be assigned a case worker, and WILL be investigated until the caseworker can file a reccommendation. This is a huge PITA to the school district and could potentially result in millions of $$ being pulled until they comply. This is the "liability" they are so afraid of.
Kay

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Burlap bags are often used to store and ship coffee beans, potatoes, rice, seeds, nuts, and peanuts. They can be one of the disguised...

People with pollen allergies need to stay away from some foods. If you have allergic rhinitis in the spring or fall, you may not realize that you...

Of course, everyone knows that if you have a peanut allergy that you should avoid peanuts, peanut butter, peanut butter cookies and foods that...

Eating at a nut-free lunch table in school is a safety precaution that causes some students to feel isolated from their peers. Unfortunately,...