Talking Allergies

My meeting is on FRIDAY! It will be an hour. . . and they sent me their new suggested template letter for review. I am THRILLED about the 'avoid' sentence -- they have been real sticklers with that and my principal has flat out refused to ask other parents to avoid anything. Now that it will be policy, I won't have that fight. Thank goodness!

Let me know what you think of their letter. I do want some changes for clarification, but I know we will get somewhere with the conversation if this letter is the starting point. YEAH!!

Caroline2

I'm quite confused about these two sentences. The first one says "don't send it in" and the second one says "tell the teacher if you send it in".

How about for the first sentence:

The anaphylactic child will be safest in a classroom free of his/her allergens. The school is not asking for a ban, but would like parents to be aware that sending_________ or foods containing ________ to school does put him/her at risk of having a reaction from contact, accidental ingestion or from being bullied with the foods he/she is allergic to.

Personally, I find people clue in a little as to why classrooms should be free of allergens when the bullying issue is brought up. It happens. Mentioning it may make parents realize that allergy aware classrooms are about more than the allergic child "not being responsible for him/herself".

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DD age 9 1/2 -peanuts, nuts,
DD age 7 1/2 - milk, eggs, chicken, peanuts, treenuts, cats, dogs,
DS age 2 1/2
Husband- asthma, eggs, treenuts, fish, shellfish environmental
Self - penicillan, eurithromiacin, mild laytex allergy.

I also strongly believe that this sentence should say: "...he/she will have a serious reaction..."



I still believe here that:
- Discouraging children from sharing food, knives, forks, spoons, cups or straws;
- Children must wash hands before and after eating;
- Providing a safe eating area in the classroom without isolating any one child;
- Washing of desks after meals and snacks with soapy water;
- Not using allergenic food in crafts.
-


I agree that the second sentences doesn't make sense if the first sentence is there. It could say:

"If your child brings item(s) that is/are questionable or if you are not sure whether the item(s) may contain __________, either consume it at home or please tell him/her to inform the teacher." Or something to that effect.

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Son-anaphylaxis to peanuts, allergic to soy, peas, beans, tree nuts, cats, trees, grass & mold. Asthmatic due to colds & allergies.

Daughter-anaphylactic to kiwi fruit, allergic to soy, dairy, trees, grass, cats & dust

Personally I would want to strike that second sentence. If you are asking them to avoid bringing the food in, then that should sufice. The teachers are responsible for monitoring the situation. The responsibility should not rest on the shoulders of other peoples 8 year old children.
I would ask how they plan to enforce it as you can expect someone not to comply.

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Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy and green beans) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: Oral Allergy Syndrome, Allergic to Birch trees

I am wondering, Caroline, now that they are listening to you, if you could talk to them about how to inform the larger school community of this situation. Could they put signage up on the entrances letting people know, could they send the letter to everyone in the school? Could you have a section in the school newsletter? Could there be a section on the PAC bulletin board about this?

Oh, yes, I want to talk about a lot of things -- more than just this letter. I am trying to get it down to a few specific messages, but it is hard to choose. Pam, I know you have been at meetings like this, speaking with the medical people and school admin types -- do you have any recommendations? Anyone else?
Caroline2

The meeting is today...I am so nervous. BCMom and hopefull D's Mom will be joining me, so I feel strength in numbers. And, as my son's class (minus my boy) all shared cookies with (chocolate) M&Ms on Tuesday and ate chocolate peanut butter Halloween treats on Wednesday and Thursday, I cannot get help fast enough....Send good thoughts!!
Caroline2

So. . . I survived. I am still feeling a little overwhelmed, but I need to share.

The meeting started out with all the administrative people already seated. We were in the main board room, but seated at a square table. It was an intense location, really. (Both BCMom and I dressed in business wear, so at least we looked the same!) Present were two associate superintendents and three people from the health authority. One person was the original writer of the template letter -- and the person who told me in a conversation that the right to life and the right to eat what you want are of equal importance. Although I knew that the head of prevention services and the health officer were going to be there, I was not aware that she would be as well. It threw me off for a second, but I recovered.

So one of the associate superintendent's started the meeting, and mentioned that a good part of it would be dedicated to rewriting the template letter (see above). He then opened the discussion. . .

I began by asking if anyone had an anaphylactic allergy, or if they knew a family or close friend that was anaphylactic. Only the medical officer knew someone. So I told them I wanted to introduce them to my son -- and I handed out a photo of him dressed as Obi Wan on Halloween. I then read, with a wobbly voice the following:

My son just turned 8 years old. He plays net for the Kings Hockey Club. He loves Star Wars, Lego and his Gameboy, and is probably the most pleased with himself when he is playing his Lego Star Wars game ON his Gameboy. He is a thoughtful and energetic boy who has a sense of humour as well as a sense of empathy. Oh, and there is one more thing about him - he is not too fond of most kinds of food. Why? Because he has a life threatening allergy to peanuts.

Although this allergy does not define how I see my son, it has been part of my parenting journey. Our family changed a lot the day he had his first reaction. When he was 13 months old, my little guy bit into a peanut butter cookie. Immediately, his nose began to run. When he suddenly got big fat lips, I knew he was having a reaction. When his eyelids got hives on them and his voice turned hoarse, I reached for the phone to call 911, as I recognized this to be a full-blown allergic reaction - I had seen it before because my brother is also anaphylactic to nuts… my heart was in my mouth. . .my husband was quickly washing up him and then. . . the reaction subsided. Once the wave went back down, of course I still called the nurse line. The nurse recommended that we get him tested for allergies. When we got the results back, we found out he was anaphylactic to peanuts. Not until our usually laid-back pediatrician said we must ALWAYS carry an epi pen and ALWAYS avoid peanuts did we find out how serious this was. And so our journey began.

We soon learned that we had to get all peanut products out of our house because of the dangers of cross contamination. We also learned that friends couldn't shell peanuts and then hug him FIVE HOURS LATER because he would have a reaction. We also found out that it 'didn't count' to scoop the nuts off the top of my daughter's ice cream sundae - she still couldn't kiss him on the cheek after she ate that because he would get hives.

We also learned some harder lessons. We learned that a lot of people wouldn't understand the seriousness of having a life-threatening allergy. But we knew that our friends would never eat a peanut butter sandwich while sitting next to us because they wanted him to stay healthy. They understood that we are not just being 'picky' - this is a life-threatening situation. We also learned that our not-so-true friends would bring peanut butter on a camping trip in the woods and not care that this caused a lot of anxiety, child and adult alike. We sure learned that not everyone would 'get it' . . . and there would be heartache when that person was family.

But we can't sulk - it is what it is and we still need to do something. So our job has been advocating for allergy awareness. His preschool changed their menu for him, and brought the allergy issue in as a learning experience not to be feared but to be talked about. We have since taken our message of allergy awareness to his kindergarten class, his grade one class, his grade 2 class and his grade 3 class. We have learned is our family's responsibility to bring this issue forward - however, please know this -- we DO NOT choose this responsibility, and we certainly do not want to be defined as the Allergic Family. WE HAVE to be vigilant in raising awareness simply because his life depends on us. We must raise awareness about allergies, we must do all we can to avoid a reaction and, unfortunately, we must always be ready to act quickly in an emergency. Help us work on making sure we reach these goals in his school environment as well. My hockey-playing Jedi is depending on his community to care enough to help keep him safe. Let's teach people more about allergies. Let's be prepared for an emergency. Let's have more supervision at lunch. And, if we can't do that, let's get his allergen out of his immediate environment - let's get it out of his classroom before there is a life-threatening incident.

I think they knew that was coming, but I had to give them a Face to these policies. It was scary.. . . but the conversation progressed. We all agreed that we ought to rework the template, and we compared it side by side with our suggested one.

There was agreement to strengthen the language. . . but not so far that it seemed like there was (THEY used this word....) a ban on the allergen. This brought up that whole awkward conversation, and I have to say I wish I handled it better...for I got a little wound up about having to deal with this. I was cut off from talking a couple of times, but when it was my turn, I picked up my son's toy light saber (I had already pulled it out in a moment of excitement) and said he was not allowed to take this to school on Halloween. It was an integral part of his costume -- why is it 'banned'? "Because it is a weapon." So I pulled out a Reese's peanut butter cup and said, "This is, too." I opened it and the wrapper was all slimy, so I held that up -- if my son touches this paper, then his eyes, nose or mouth, he WILL react. And then, once more all shaky, reached into my bag of tricks and pulled out an orange and an expired epi pen. I was scared opening it and but I pulled off the end and stabbed it into the orange. (I quickly took it out and then placed it back, mumbling, 'Oh -- I am supposed to wait ten seconds....') MY adrenaline was sure flowing - but my point got across. We want to avoid this need to medicate if we can, for it is a frightening thing to have to do. But we WILL if there is a need - we have to.

After this demonstration, we did get back on path, stating that we need more awareness in the schools. The health authority did say they would work with us to create parent workshops that also included allergy awareness -- they are just developing them on nutrition, and it would work well with a label reading lesson. So that is cool. They also said they can work more with getting information into the media -- they regularly produce information for parenting magazines, and the health officer can get a hold of other media, as he has done so in the past.

So we walked out of there with a promise to keep working together. I mentioned the consensus statement put out through Anaphylaxis Canada, AAIA and three other health organizations that is considered to be a really good resource. We have more meeting times ahead - through email and in person with the health authority -- but I feel pretty good. I also feel heard, and I certainly can't complain about that!

Now, time for a nap. I am BEAT! Thanks for reading this novel. And for all your support that helped me get through this meeting, especially to BCMom. It was great to be there with someone else who knows about living with allergies.

Caroline

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son anaphylactic to peanuts

WOW CAROLINE...I'm impressed!!!

_________________
DD age 9 1/2 -peanuts, nuts,
DD age 7 1/2 - milk, eggs, chicken, peanuts, treenuts, cats, dogs,
DS age 2 1/2
Husband- asthma, eggs, treenuts, fish, shellfish environmental
Self - penicillan, eurithromiacin, mild laytex allergy.

Thank you so much Caroline2 for arranging this meeting! I walked out of there much more happier than when I walked into that meeting. It is small steps that we made today, but they will lead to something more in the future. They've agreed that awareness, and education should be raised not only in the classroom where there is an anaphylaxis child but also in the school, and the school community! And, like you said, they will be organizing workshops on that which I will surely have some input and some involvement.

I wished I could have been more help to you but you were fabulous and I am glad I was there mainly to support you and to also add my 10 cents worth! Thank you again!

Let me know when you need me again.

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Son-anaphylaxis to peanuts, allergic to soy, peas, beans, tree nuts, cats, trees, grass & mold. Asthmatic due to colds & allergies.

Daughter-anaphylactic to kiwi fruit, allergic to soy, dairy, trees, grass, cats & dust

Wow, Caroline - that's quite a story. I'm impressed with your use of tools like the light sabre to get your point across. Very effective!

Thanks so much for sharing. I'm so glad that you are seeing some progress.

K.

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Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma

That is just so great, Caroline2 and BC Mom. This will make it better for so many kids. Hopefully, it will have a ripple effect.

Congratulations!