Kate, it's ready.  Just open this thread, and the download button in the initial blog post will link to the revised handout file.

I have a child with multiple food allergies, with dairy being the most severe.  He also has had asthma induced with "contact sensitive" reactions from accidentally touching an allergen on a surface and then touching a membrane (eyes, nose, lips).  Many people do not realize the severity of "cross-contamination" and or "contact sensitive" individuals with food allergies.  Putting my son in a room full of kids eating something that he can't is just as dangerous due to the "contact sensitivity". 

I am sorry, Lynda, but I have to disagree that we have to do our best with "inclusion", but not when a kid has severe food allergies.  That ONLY works with the less sensitive individuals with food allergies.  My son can't sit next to another eating nacho's with cheese or a cupcake if that other kid isn't careful about his hands or his personal space....PERIOD!!!  I also agree with Dashimom that the way this was worded does minimize the severity of a lot of kids out there with food allergies.  It isn't our kids faults they have these allergies, just like it isn't a kids fault for having type 1 diabetes.  Both kids have to be careful about the foods they eat or don't eat for different reasons, but both have severe consequences if they don't follow their dietary guidelines.  So, many parents out there don't truly "get-it" about food allergies and so it is AUTOMATICALLY minimized by lack of knowledge often.  I have also had people say....don't worry so much....you carry and epi-pen ....that will save his life.  I have to then tell them that a kid with such sensitivity and asthma is more likely to DIE than one that just has the food allergy.  The real issue at hand is these kids can DIE from accidental ingesting or by accidental contact to membrane induced reactions and I am SO SICK of having to apologize for why the kid next to mine can't load up on all the crappy junk food that parents mistake for good nutrition anymore anyways.  Why does it always have to be pizza parties and ice cream socials???  Why can't kids ever have fruit kabobs, veggies or a chicken sandwich vs. pizza, hot dogs and burgers?!!!  They wonder why our kids are so obese anymore and it has a lot to do with our kids eating nothing but processed and food loaded full of chemicals.  Sorry, for my soap box, but I am tired of these kids with food allergies, who are alienated often enough, by not having the same freedoms as the next kid to attend sleep overs, birthday parties and a simple trip with a friend to a restaurant, to constantly have to almost apologize for helping them exist with others in this world.  We constantly have to politely ask others to be understanding about our kid with food allergies and MANY times I have encountered parents that are total jerks as their kid just has to bring cupcakes to sunday school or soccer practice for their birthday.  No exceptions.....can't I just throw your son a carrot stick?  I bring chips and juice drinks often to help show that kids will eat other things too and be just as happy if they get a free snack for no special occasion and something that is healthy and 100% juice and not chemically derived Gatorade or Kool-Aid.  I have won some parents over often to being another parent that "gets-it" or tries to get it that way.  However, minimizing it just adds fuel to the ones that think we are just bonkers....our kids can't die sitting next to their kid on the little league bench downing a hot dog with cheese or a candy bar as their parents didn't have time to feed them at home as I had to and really could care less about my child possibly dying as a result of it.  My son has had to come off the bench before as it was just too close and risky to take the chance.  Finally, we got a coach that stopped food on the bench and if anything they wait til they are done eating to play the game on the bleachers.  Our kids are made to feel like second class citizens enough and almost freaks of nature by others and parents are often seen as helicopter parents or bonkers because we go to extreme measures with our wet wipes in one hand trying to keep our kids safe.  Please, I expected more support from this website for kids with food allergies and asthma.  The real message we need to get out is....our kids can die from this and stop sugar coating it.  In less, you want my kid left out as you are too selfish....lets teach all the kids empathy for others and support them.  I am sure their parents can take their kids to McDonalds for a chocolate shake after the game, but lets keep their fellow friends alive.  I have dealt with this for 14 years and people are more considerate of the people with physical or apparent disabilities as they are the kids that are normal in every sense of the word, but have food allergies and asthma.  We are made to feel like we have to beg them to get on board to help our kids be included.  That's how I feel about your so-called inclusion remark.  Yes, I am bitter, but would like to see it get easier for other parents out there and the increasing number of kids that are getting food allergies each year.  Please, don't just minimize it and our efforts for a nice politically correct ....doesn't mean squat....brochure! 

I understand this handout was created to help people understand food allergies, but including statements like, "Children may be asked to not bring certain foods to school so other children with food allergies can participate in school activities with their classmates and not feel different or left out." makes it more difficult for parents of children with life threatening food allergies.

The reason for not bringing certain foods to school is so children don't die, period.  

Diluting the message and making it about feelings only makes it easier for people to disregard and minimize the seriousness of food allergies.  I have read many online comments from parents of non-allergic children who don't want their child denied something so someone else's child's feelings don't get hurt.  These kinds of statements about "feelings" just reinforces their position and makes it harder for parents of children with food allergies to keep their children safe.

It's not about hurt feelings - it's about keeping our children alive.

I'm in tears while reading this.  It's perfect.  THANK YOU for listening and revising.  I finally have something to hand out to teachers and parents!

Thanks, Carol. We're in the process of updating those sections of the handout. Our graphic designer is on vacation this week.

thanks for the suggestion on alternate wording.

Lynda,

This is a great handout.  Thanks for your efforts and thank you EVEN MORE listening to some of the feedback here and considering some small changes.  

I do agree about taking out the "clean theory" info.  Folks who aren't dealing with this every day can easily be confused by this and blame the family of the the allergic child for being "too clean."  You get comments like "well, maybe you should have let your kid play in the dirt more when he was a baby."  If anyone saw the state of my house, they would never say that! 

I love, love, LOVE the part that says there is no cure for food allergies.  I'm sure we have all been subjected to comments from know it alls who tell us they read in a newspaper article that if you feed your kid "just a little" of their allergen, then he will get over it.  Uh yeah, it doesn't really work like that and it isn't something you do outside of a doctor's office or under a doctor's supervision.  

Re the paragraph on why other parents are being asked not to send certain foods to school, I have to admit that this is why I won't be sending this handout to my son's school -- as much as I REALLY want to.  While all the other info in the handout is great and explains everything -- including the fact that kids can die from their food allergies -- the way this section is worded gives the hostile anti-allergy person something to hang their hat on as to why we shouldn't all be inconvenienced just because of one kid's "feelings."  

Here is the current language from the handout:

"Children may be asked to not bring certain foods 

to school so other children with food allergies
can participate in school activities with their
classmates and not feel different or left out."

Here is how I would change it:

"Children may be asked not to bring certain foods to school so other children with food allergies can be safe and participate in school activities with their classmates."  

I think the "participate" language gets to the point of inclusion without leaving that as the ONLY reason to ask other families not to send certain foods to school.  

Of course, if it were left up to me and my typical "hit them over the head with a brick" approach, I would say something like "because school is not a restaurant and there is no legally protected right for your precious little kiddo to eat peanut butter wherever the heck he likes" or something like that.  But that probably wouldn't go over so well.  

Wow, you guys are great!  I had absolutely no help from my local school district.  I was basically told to home school and was even given a number of a good group that someone knew of etc.  I went that path and sometimes regret it.  Homeschooling is good, but works better in larger families.  My son often felt isolated even though we had lots of outside activities. (soccer, swim team, baseball, guitar)  I really feel like things are getting better for the younger ones coming up, but felt my son was more in the early stages where a lot of safety measures were not in place.  I am very glad things seem to be getting better and this group is way better than the only resource I had out there at the time. 

Amom and Lynda, you are onto it now.  That is so true Amom that I found myself laughing.  Yes, they see us wiping surfaces down and think we are just clean freaks and we probably made the environment too clean and thus we caused the food allergy.  We all know, we are just trying to keep our kids safe and not in the hospital.  Oh, to be among those that understand, even though I have crossed many of these hurdles a ways back is both refreshing and good therapy.  Yes, that hygiene theory is totally misunderstood!

I think what I am hearing here is that the hygiene theory statement in the handout is something that people without food allergies misunderstand, and therefore, it might be better to remove that from the handout altogether.

To clarify, it is a theory. It's not proven. And the theory relates to *developing* food allergies, not to outgrowing food allergies or managing food allergies. It has nothing to do with washing hands before or after eating to remove allergens.

I'm also sensing that you think that mentioning that the inclusion statement should be removed...not because it's wrong.  But because that concept can be polarizing to those who don't deal with food allergies. A good example is the way the media portrayed this headline.

So, I thank you for your comments. You are making good points. Let me see what I can do.

Hi, Thanks again for doing this, but I wanted to bring a problem to your attention about downloading the handout.  If you click the image, the current (August) version comes up.  However, if you select "attachments" and then click the pdf file listed under "files", the July version comes up.  

I agree with DashiMom.  I have had many people respond to my worries with ....he will be okay....we have his epi-pen.  Then I have to go and explain how food allergies and asthma combined aren't always fixed with a dose or two of an epi-pen.  I really think people just look at me then as if I have two heads or I am just plain nuts.  Thanks for updating and addressing so many things Lynda, but that is a great idea as a final note on any future revisions.  This is so much better than anything I had when my son was smaller....a big thank-you and hopefully people will get it from a trusted source and not just some whacko mom. 

Lynda,

The revised hand out if much improved from the original, thank you for taking all our feedback into consideration.

If there are any subsequent revisions, please consider also including a statement that lets readers know that epinephrine is not always effective in halting anaphylaxis, so strict avoidance of allergens is critical.  There seems to be a misunderstanding that there is an epinephrine safety net: If a child does have a severe reaction, just give him epinephrine, anaphylaxis stops, and no harm done.  Unfortunately, in reality, we know epinephrine does not save every child's life.

Thank you again for your consideration.

I should have it for you later today!

Welcome Kate.

GREAT!  Thanks so much!  You all make my life so much easier!

Hi Bia,

I just got the updated version from the graphic designer a half hour ago. Once it's proofread, if no further changes are needed, I will post it here, probably tomorrow.

Thanks!

Lynda

Lynda,

Do you know when the revised handout will be available?  Our school would like to distribute this to the greater school community to help explain the need for policy changes, but we would like to send out the updated version.

Thanks!

Kate

Thanks Lynda!  I'm looking forward to seeing the revised handout!  I think it will end up being perfect to hand out to teachers and parents!!

Carol,

Love your comments.  Oh my gosh, I have had many tell me I should just let mine touch a bit of his allergen or sneak a small pinch into his food to desensitize him.  OMG, not outside of a doctor's office or a hospital.  Mine would probably die if he had a pinch.  Even well meaning people don't always get it.  These were neighbors of mine that are grandparents and they suggested this "cure" to me.  Funny, how the general public can cure food allergies for us all and the medical community seems to lag behind our friends and neighbors!    Anyway, yes, I have a teacher type that is a neighbor too and she grew up on a farm and she is convinced the reason my child had food allergies and her darlings did not is due to her farm upbringing and the fact that she let her kids get dirty.  Funny, my house is more cluttered than hers and our kids played in the same suburban dirt together.