Back to the Food Allergies

I joke that I live in a zoo. It’s kind of literal, we do have a crapton of kids, pets, other people’s kids, etc. It’s also kind of a metaphor for the controlled chaos we have going here between work, kid activities, my activities, our hobbies, and just life in general. One of our underlying, longstanding issues is of course the life threatening food allergies that Dorothy still has, that she always will have. We have done our very best to keep everything she does as normal as possible but the undercurrent is always there. Because we have constructed many strategically placed barriers, sometimes we as a family, her friends and her teachers can almost forget. Almost. Well, until we have an issue.

I’ve talked a lot in the past about the 504 Plan in place at school. It has many classroom modifications in place and lunch room procedures that allow Dot to operate within school safely, and hopefully without fear of allergic reaction. This ADA plan is in place because the severity of her allergies is debilitating. It is a disability. She reacts violently not just to consumption of tree nuts, but has a long history of reactivity to proteins left behind on surfaces and particles in the air. 

Over the last couple of weeks something within the classroom has changed. We can’t pinpoint exactly what is going on, but my suspicion is that one of the students got some new hand lotion and has been touching things. Dorothy has been to the nurse 6 times for hives that start on her right arm. The hives obviously itch, and travel quickly. Within minutes they cover her upper body. She is given Benadryl, and once they subside she is sent back to class. The problem here is that the Benadryl is a Bandaid. It is reactive to a problem that she isn’t supposed to have to actively worry about at school. Her teachers continue teaching, she misses class work, misses material that she is responsible for, and then returns to class sleepy. This can’t continue. 

She has been moved to the front right of the room, she no longer shares supplies (we need to add this to her 504 for 6th grade, though why 5th graders are still sharing is beyond me), and has been given her own white board. The custodian is being reeducated on how to clean her desk. The white board is a bit of a problem because she can’t leave it in her shared locker, she is concerned that her locker mate will touch it. Now that I’ve written this out, I’m going to call and ask that she not have a shared locker, and also ask to modify her 504 to include the supplies and locker now. The students are all being reeducated along with the teachers on how to prevent allergic reactions, and mandatory handwashing upon classroom entry has been enacted. Dot is concerned that the other kids will resent her for the changes. She doesn’t want to be different. We are working on this. Right now, her safety is number 1, but I have to address the mental aspects as well. I don’t want this for her.

Every time we deal with the big Pink Elephant in the room I have a little cry, and then I put my brave mom face back on and deal with it head on. Right now I’m still having my little cry. I know that we all send our kids out the door everyday and hope they will return, freak things happen all the time though. The problem with my girl is that the “freak thing” could be a simple as a kid having honey nut cheerios for breakfast, or a granola bar, or having washed their hair with Tres’eme shampoo and then hugging her. At the end of the day though, I have to assure myself that I’ve done every.single.thing I can to keep her safe, if something breaks down and fails I though, I will have to deal with that too. I try not to go there very often, but when I let my guard down, when I stop being vigilant…ugh. I’m done with this train for now.

Anyway, education about food allergies is ongoing. I wish there was another name for the type of allergies we deal with, something that everyone would “get”. But there isn’t.

I’m emotional about this today. I’m looking for a presentation/video that can be shown to 5th graders to help them understand.

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School safety

I don’t know anyone with children who wasn’t deeply affected by the tragedy at Sandy Hook elementary in Connecticut. It made me hug my children tighter, thankful it wasn’t my kids, I felt guilty that I was thankful it was someone else’s children, even guiltier for verbalizing it. It prompted me, and thousands of other parents to reevalutate the illusion of safety we have had in sending our children off to school each day. It even prompted me to show up at a PTO meeting for the first time in 5 years to discuss the security at our own elementary school. I felt “ok” with the security at our other schools, but our elementary school has some major problems.

After i left the meeting I really gave some thought to what had been said, what’s being done, and the effects it may have on the children. Right now, my kids feel safe,and the truth is, a motivated killer can get in anywhere. I’m going to include here and exchange I had with another mom in response to the meeting. We are both long winded, so excuse it and know that i’m posting it up because i have a point, I swear.

  • Friend

    OMG its keeping me up at night….for real. im gonna set up a meeting with miss H….was i wrong to ask what other things were gonna be done to the school for security…was I wrong to wonder if the doors and windows would ever be replaced and updated….and this buzzer deal doesn’t even sound like it will be actually fixed to the building….I did a lil research on them and if I am looking at the same thing Miss H mentioned, this is a MOBILE buzzing system and isn’t even a part of the building( I could be wrong tho, it happens once in a while)….it just doesnt seem as though they (admins) are really are doing anything to our building. I see they are updating the HVAC system….yay, but as far as secuitry thats all we get is this mobile buzzing system….I feel like its our turn as a building….to be updated a lil bit at least. Have u been to harris…its a cadilac and us at coverdell are a pinto compared…(building wise) Shoot I bet those are the original doors from the 60’s when the place was built. and this nonsense on how school is just like the movies and walmart and such as far as security, being this is such a sucky world we live in, is really making me mad….not upset mad!! How can our principal compare our schools safety to that of a movie theather….shoot when I think all night long about it….a movie theather is safer than school….cuz IM THERE!!!! Miss H seemed to be a lil deer in the headlight looking when I asked if they were going to be doing anything to the windows and such…am I the only one who thinks we need MORE updates…..I hold high standards I guess….sorry to ramble, HELP lol…it was either you or sarah who got it and since you were at the meeting I thought Id get your advise. I do think a call to miss hill will be happening today….what do you think?? has anyone mentioned anything about it…besides making fun of me. LOLOLOL She really did make me feel like an ass tho….thats why i hate talking at them meetings. gonna take C to school and feed the animals if i dont reply right away.

  • Tara  (ME)

    Hey Friend – good morning! My laptop is having “issues” so I’ve run into the family room to respond…i think this is more than i can type on my phone LOL!!!

    I DO think our building has got to have more updates. There are multiple issues regarding this though, and A (the principal) really can’t do much other than implement building policy. The district is hurting for money in a major way. I don’t have to see a budget to know this because our school and School B,  School C & School D, and perhaps School E but don’t quote me on that one all became Title I schools this year. This means that a minimum of 40% of the students meet the low income standard determined by the free/reduced lunch program. School B is over 60% I believe. So this of course means that the tax base for the district is low. A bond issue for major renovation is the only thing that will be able to fix the big security problems. The best chance to have real security changes will need to come down from our School Board. There may be grants our district can receive, and I’d hope that Dr. M (the superintendent) has a grant writer on top of that.

    Do not feel like an ass at all. If nobody says anything, nothing will ever change – but I think the right person would be the superintendent, followed by perhaps our State Representative.

    I think most parents send their children to school under an illusion of safety. The truth is though, Ms. H is correct, it isn’t any safer than anywhere else we go. We have to heavily weigh whether we want our children to grow up in a police state and what implications both intended and unintended can occur with each additional safety precaution.

    The glass absolutely needs to be replaced. An auto-locking device should be installed on the doors to the building from the breezeway – one that the secretary could instantly lockdown without a key in the event that an intruder shot through/forced his way through the breezeway entrance. If I had my way, the front offices of these schools would be staffed by a principal & assistant with concealed firearms.

    This world is a scary place.

  • Friend

    Whew!!! I needed that….really I did. My mind felt like exploding. I’m still somewhat of a newbie and understand that I should take the building issues to the administration. Im so scared…..I wish they would just rebuild the whole place. Gas staions have more security with those h hidden 911 buttons they have….I guess I was just hoping for more for the kids. And so agree some one in the office should be armed and trained. it wouldn’t be so bad if chloe was my youngest….but all the years ahead of me at coverdell really worry me!!! I do send my kids under the illusion of safety but still hold school up there with church. I guess its just the fact that I’m not there with them like I am at other places. I’ve looked into moving and homeschooling…..already…..I don’t want to do either. We even got a low income grant from oyr church to send our kids there but with 4 even the grants would make it impossible. Im trying to just go with it and not let it bother me but……its not easy. Thank u for that tara…..I needed it.

  • Tara (me)

    I know a handful if people who do homeschool their children. On of my bffs does, she lives on a nearby street just a couple blocks from here. I am sure she would talk to you about how she does it and still balances life and giving her kids a social life. Our kids are all friends

    You know, every day for 6 years I have worried about sending Dorothy to school because if her life threatening allergies. I have worried that something will happen despite all the precautions we have in place, that someone will disregard them, that she will take a chance, that the epi pens wouldn’t be enough. Fear is a funny thing because I worry now, but I have had to balance my fears with making sure she can lead a normal, wonderful life. If something happened today, and I never saw my girl again, I know I have done everything I could do to keep her safe within my power. That’s all I can do. It’s the same with the security thing in a way, I feel like there are more things I want done but I have to hope that what they have, what they are doing will be enough.

The final follow-up to the Halloween saga

well, I did think it was over, but nope, not quite. I thought a call from the principal would be enough. Apparently I was wrong because the next morning I got this.

You are going overboard with your attitude. Mary Goodson has already taken the game on. I said if you wanted to send in treats that is fine. Donuts are great. What seems to be the problem? I know about Dorothy and her allergies. I EMAILED ONLY TO MAKE SURE I HAD EVERYTHING UNDER CONTROL.. I have already talked to Annette and sent her an email yesterday morning.

You have blown this way out of proportion.

Such compassion! I replied…

But you didn’t. The doughnuts were unsafe, you said from the get go that they were unsafe and you knew she couldn’t have them. Do you not understand that just touching something can kill my daughter? Do you know what it is like to watch your child almost die and have epinephrine be the only thing that can save her life and that not be a guarantee? The party is supposed to be 100% safe for her, it was not. I offered solutions not critisism. When you fear sending your child to a party because someone doesn’t understand her disability, talk to me about going over board. Until then, I feel harrassed by your aggressive attitudte towards me. I’m sorry you can’t control the food, this is WHY WE HAVE A 504 PLAN. IT IS A DISABILITY. IT ISN’T ENOUGH TO MAKE HER SOMETHING DIFFERENT IT NEEDS TO BE THE SAME FOR THIS PARTY.

Email my husband in regards to what actually will be served other than the doughnuts. Mr.THEMAN@hisoffice.com

Of course, she ignored my request that she send further communication to John. I’ll take a moment here to say that our school is NOT tree nut free, only Dorothy’s classroom and classroom parties – this is outlined in her 504, school functions do not have to be nut free.

I said that I was getting them from IGA. I have always gotten them from IGA, For the Grandparents Breakfast, for the Dad’s breakfast. I did not know about IGA. That is why I emailed you first RIGHT!!!!

I was checking with you……….

followed by this changed attitude email…again, to me…I never did respond to her.

Tara:

I am done with this. If you want to bring the donuts, please do. Mary Goodson said she would take care of the game, I am reading a storie. If you want to put the craft together for the kids, I can drop the supplies off at your house.

This is a party for the kids and this is absolutely ridiculious. I have never had any problems like this before since I have been involved in these things and I have a 19 year old and I refuse to go through anything like this again. I just emailed you to make sure that Dorothy was going to be able to have a safe party just like everyone else. These conversations got out of control. I am sorry.

Let me know if you want to put the craft together.

I told John she could take her craft and shove it up her ass.

Our principal got more involved and sent this.

It seems as if there are some hurt feelings among the two of you and I want to see if I can help a little. You are both caring mothers that just want the best for your children and the other children in class.

This is where I think we are:
Mrs. Bitch is planning the party in terms of activities, games, etc. We certainly appreciate this.
Mrs. Tara does not wish to plan the party. She just needs to approve the food items. This is something that is written into a special plan developed for her child because of her allergies.

How about this…Bitch please send me a list of the food you are thinking of serving and putting in treat bags (it might help if they are chosen from the list Mrs. Tara provided). Then I will check to make sure that everyone in the class can eat these items.

If donuts are still in the plan, they do need to come from a nut free bakery and Mrs. Tara can pick them up. I see this as the extent of her role in this party.

Perhaps instead of contacting each other, I can be the go between on this matter. My hopes are that we can resolve this as a group before the Winter Party.

I’ll consider that good.

Thank you all for your positive thoughts on this and for your concern about my daughter! I wish she could be surrounded with such wonderful people all the time!

Party planning update…this is a doozy

Rather than paraphrase, I’ll just include the emails intact.

Room parent:

No the candy does not have tree nuts in it. I will not send a list home because I have everything I need now and the parents gave the party money, they don’t need to be nickeled and dimed to death. I will take care of it.

What about drinks is there something specific that Dorothy can not have?

My response:

Okay. I”m not trying to be a pain here, I promise. Our action plan provides that the snacks be coordinated with me, so that they are appropriate for Dorothy. The classroom is supposed to be tree nut free, and party time really presents additional issues. I have always planned the parties (and I”m definately glad someone else volunteered, though I must have missed the sign-up or I would have volunteered for at least one of them), so food was never an issue.

Parents ALWAYS send extra stuff in, even if they have been asked not to because they want to help, so I will work with Mrs. Wallut to find out how she wants to handle that if the snacks are not okay.

For drinks she is allergic to mango. There aren’t too many things that actually contain it, but some of the Tampico stuff does have it. Fruit punch, capri-suns, Koolaid, apple juice are perfect.

Thanks again.

Her reply…

You know what. I suggest next time you make sure to sign up for these parties. I know there where at least 2 forms that went out and a meeting was held last week. I am sorry that you have missed those but since you have I have signed up for the parties. I am again, not asking for anything and will not. If parents want to send something in that is there choice and it will be noted on my flyer. I know nothing of having to go through you for food issues, I know that I need to follow certain rules and I have. I have contact you, I have asked what Dorothy can and can’t have. Food as never been an issue, I have been asking you to make sure everything is covered. (Just like all of the breakfasts)

This is my party and I will work with Mrs. Wallut what I have planned. If there is something she does not like or something she wants changed I will do that. To many hands in the fire is too confusing for everyone. That is what a headroom parent is for.

Again, if you have problem with this I suggest you make sure you are headroom parent next year.

and finally my response

I shouldn’t have to volunteer to run a party to keep my daughter safe. I volunteered to assist with the party and a packet was sent home from Mrs. Schiffer. I don’t want to plan the party, I was discussing food with you as is outlined in our ADA 504 document, which is a legally binding document. The packet that was sent by the PTO said to talk to the teacher about allergies, which I assume you did. I don’t care how you plan the party, I volunteered to help. I had thought that all help would be welcomed.

Good luck, I hope that your party runs smoothly

At this point, the principal called my back. She assured me that I am not in the wrong here, that this room mom MUST COORDINATE SNACKS AND TREATS with me and that she would call the room mother. She also has spoken to the teacher to let her know to be more assertive, that it is her JOB to keep Dorothy safe and the classroom nut free.

Here we go again, Halloween Party

I’m frustrated today. This is the first party that either the teacher or I haven’t planned. I sent an email to the lady planning it two weeks ago reminding her that the party needed to be TREE NUT free, along with a list of over 200 acceptable snacks. She responded to me letting me know that she was, “well aware of Dorothy’s allergies.” Well, geez, lady. I’m glad you are AWARE of her allergies, but this didn’t answer my question, nor did it give me a warm and fuzzy vibe. Dorothy’s classroom is supposed to be tree nut free. She is supposed to feel safe in her classroom, this is why we have a 504 plan.

I get this email today:

Tara:

I am getting ready to get stuff for the Treat Bags and need some idea’s to make one for Dorothy. Could you please give me some ideas. Also, we will be having donuts from IGA. I know she can not eat these but when we had the Grandparents Breakfast I had gotten her the Hostess Muffins (Minis) is that still OK and which kind does she like best?

Thanks!

My response:

Is there a possiblity that her bag and snacks could not be different? The classroom is supposed to be the one *safe* place for her in the building that doesn’t contain any nuts, her 504 plan even limits what kind of lotion her teacher can use. Paul’s Doughnuts, down off of Elm near New Town, is tree nut free and is a safe doughnut for her to eat, in fact, I will volunteer right now to provide all of the doughnuts 🙂 As for the treat bags, safe snacks are mini hershey bars, nerds, sprees, skittles, whoppers, fruit snacks, fruit roll ups, Hostess snacks (Ding Dongs, HoHo’s, Twinkies, unfortunately now all the mini muffins are no longer tree nut free), twizzlers, and smarties. For the bags for everyone, I have jelly bracelets, spiders and pencils…lmk if you want me to just send those in the day of or what. Did you want me to plan a game or two?

Thanks!

…and I’m not surprised, here is the response:

Game is taken care of. The kids were getting candy and I just wanted to make sure that I had Dorothy covered. Mrs. Gxxxx has sent in treat bags and pencils, if you would like to send in the bracelets that would be great. If you want to take care of the donuts that is fine also. I was not going to use the party money, just saving it for the Christmas party or Valentines Day party so if you need to be paid back let me know.

Okay, so apparently the candy is unsafe for Dorothy. Apparently the PLANNER lady failed to tell people about the need for the food to be tree nut free, and really doesn’t give a shit if she takes tree nuts into the classroom, but she wants Dorothy to be, “taken care of.” Well, taken care of means INCLUDING her in the damn party, INCLUDING her in the snack. It does not mean giving her something special. There is absolutely no reason that this should be an issue – none.

I just sent an email to the teacher asking how she plans to handle this, and an email to the planner lady asking if she will be asking for specific foods to be sent in from the list I provided. I know Dorothy will encounter nuts (the human variety – like this woman, and the kind from trees) but she is in 2nd grade, at this point I don’t think she is prepared emotionally for being singled out during a party. She already wants to stay home due to a certain amount of anxiety about nut-encounters, singling her out during a party will only succeed in exacerbating her anxiety.

Oh…and why didn’t I volunteer to plan this party? Well, I despise most of the women on the PTO, so I don’t go to the meetings, and the lady planning this party was the president last year, so she just automatically signed herself up.

Another Food Oriented event

Sighs….Muffins with Mom was a disaster. Now it’s time for Doughnuts with Dad. I have tried to call  the coordinator multiple times but she’s yet to respond. I can only assume that the doughnuts will be unsafe for Dorothy and that her teacher will need to insist on handwashing upon entry to the classroom tomorrow morning. John is going to take Dustin and Dorothy out to breakfast instead of playing the crap-shoot at the school. I wish that every blessed event at the school didn’t revolve around food. I just don’t understand why when childhood obesity is all over the magazines and news a school would have every single function based not just on food, but on fattening food.

———————————————-

Last night we went out to dinner as a family. I put Dorothy in charge of carrying her own Epi-Pen Jr.’s. I think that I will be doing this more and more often as she is getting older. She seems to be ready for the next step in helping to manage her own tree nut allergies. This weekend I will also be training Dustin to recognize an anaphylactic reaction and how to use the Epi-Pens. I’m pretty sure there is something called a PAL program and I want Dustin to be Dorothy’s PAL.

Lessons learned…

When Dorothy started the day lolly-gagging along, I should have just decided to forego the Muffin’s with Mom, sponsored by PTO at the school. But no, I pressed on and forced the issue, prodding her to hurry up and get moving so we could get there right when it started. We raced out the door and made it to the school cafeteria before the rush.

We step up to the area where the server will fill our plates and filling the table are the giant muffins from Sam’s Club, notoriously known for not only having tree nuts in the proper muffins, but for extreme cross contamination. I’ve bitten into the chocolate and blueberry muffins in the past and been greated with stray walnuts. Muffins are clearly not an option for Dorothy, and because we are eating with Dorothy, Dustin and I pass on these muffins as well. They show us some “sugar free” muffins from IGA and tell us that these wonderful muffins are either chocolate or blueberry. Perfect, we can eat bakery goods from our local IGA without issue, Dustin and I take blueberry, Dorothy takes the chocolate. Add some fruit and off we go.

I bite into my muffin and OH MY GOD. It is a banana-nut muffin, chock full of walnuts. Crap. I remove Dorothy’s chocolate muffin from her plate cause god only knows what is in it. Dustin’s blueberry muffin is also a banana-nut muffin. Great. I give him Dorothy’s chocolate muffin and give Dorothy a banana. Dorothy was already a dramatic mess this morning, so the tears just start flowing. Now she’s afraid that someone will touch her and that she will be hurt. I assure her that I’ll call her teacher and that Mrs. Ivie will have everyone wash their hands before touching anything in the classroom.

We come home and I feed Dorothy breakfast before John takes the kids back to school. I called the teacher, she assured me that every child in the room would wash hands and that all hard surfaces would be wiped with Clorox wipes.

I recognize that we cannot keep Dorothy in a bubble and that she will be exposed to tree nuts. However, she should be able to attend school events without having to worry. She has, what I thought was, a comprehensive 504 plan, but this is the second PTO sponsored event at the school where the presence of tree nuts on a grand scale was an issue, the first being the Fall Festival when the PTO specifically requested items with tree nuts to be brought in by Dorothy’s 1st grade for mass distribution at the event. When we revise her 504 plan for next year I will see what can be added to the plan so that she can safely participate in events such as Muffins with Mom and the Fall Festival.

Lessons learned:

1. Don’t ever assume that even though the same people are running the event as last year, and that you spoke to them at length last year about the nuts, that they will a)remember or b)care.

2. Don’t ever assume that an unpackaged food is what someone says it is because they probably don’t care enough to really know.

3. Don’t ever forget that you are your child’s best advocate and that they count on you to keep them safe.

4. It’s a big, bad world out there, full of nuts both literally and figuratively, both are equally dangerous.