What a food allergy parent really wants from a school

Just to bring you up to speed in case you missed my last post (and I’ll try to give you the condensed version)-  First day of school: no “nut-free classroom” signs. I went home and printed some out. Several days went by and they were nowhere to be seen. Stella’s teacher and I sat down with the principal to talk about why my signs had yet to be hung up. There was hesitation because the wording on my signs said nut free rather than nut safe. I pointed out our 504 plan states it’s a nut-free classroom and the term “nut safe” may be confusing to some parents. Principal agreed and gave me the green light- and my signs were hung up that day. Then last week we notice mine were taken down and new nut safe classroom signs were hung in their place!! No communication. No explanation. One would hope that someone would have the decency to communicate with me why my signs were suddenly not ok. Nada. I sent a polite letter expressing my concerns to the principal and superintendent early Friday morning. Monday has now come and gone and no response from the administration at the school. I’m feeling frustrated. Coupled with the many missteps the school took last year in handling food allergy safety I feel as if I’m at my wit’s end. This shouldn’t be this hard.

Anyway, this brings me to tonight’s back to school topic: what food allergy parents really want from a school. What do we want, you ask? Let me tell you.

We want a clear and concise plan for every school. We want a school to welcome in a child with a food allergy and be able to say to them “Oh, you have a food allergy? Let me guide you in what we will do to ensure that you are safe at our school…” And then do just that.

We want safe plans to already be in place. No fumbling around or making up new rules as we go. I understand this might be new to some schools. This is why we need a clear cut protocol across the board for every school. Let’s make it easy on schools for the parents and the child’s sake.

Food allergy education for parents, students and staff. This is serious stuff. Schools need to treat it as so. Food allergies are a disability.

We want to be offered a 504 plan and be honored one if we feel it is necessary.

We want a safe place for our children to learn. This means banning foods that contain allergens that could potentially harm our children in their classroom. This means creating a safe environment for them to eat, and making that environment consistently safe every single day- whether it’s raining, there’s a substitute or they’re on a field trip. Don’t leave it up to the parents to feel like they are nagging and nit-picking every single detail to keep their kids safe- we want you, the school to have done that for us.

We want to trust the school that they are doing everything in their power to keep our kids safe. We want our concerns to be at the top of your priority list.

We want  you to have empathy and compassion. It’s hard enough raising a child with food allergies in our own home. We want you to recognize our difficulties and work hard to ease our worries when they are away from us.

We want to have clear and open communication about any concerns we may have. We want our concerns to be taken seriously. We want to be heard.

We want our child to be included. We want teachers to notify us ahead of time if there is anything involving food. We don’t want our child to get something different or be treated different every time there is a birthday or project that has food.

Bottomline: we want our child to be safe, to have a good education and to be included. We want to feel supported in our concerns and not feel like those “annoying nut parents.”

What would you add to the list?

 

 

It’s been awhile

I can’t believe my last blog post was back in April!! Well, scratch that- I can believe it. This food allergy parenting stuff is exhausting, the battle with the school is daunting and let’s just face it- being a parent in general is a mind-numbing battle day after day.

To catch you all up- we had a wonderful summer! Had a lot of day trips, swam a lot at the river, and a lot of days being lazy and hanging out at home. We wrapped up our summer by taking a road trip up north and exploring Lake Almanor and visiting Mt. Lassen National Park, which was breathtaking. Most parents can’t wait for summer to be over but for us parents who have kids with food allergies we hated to see it come to an end.

I was ecstatic to find a letter from Stella’s new teacher in our mailbox the week before school started alerting everyone that there is a child with a life-threatening food allergy and that our classroom would be nut-free and to please refrain from packing nuts in your child’s lunch! I’m not going to lie- I totally cried. I was and I still am confident this year is going to be better than the last. Just a few kinks to work out.

The first day of school I quickly noticed there was not a nut-free classroom sign posted outside Stella’s classroom door. At our food allergy committee meeting last school year one of the things we all came to agreement on was that signs needed to be posted on both sides of the door as a reminder to all parents and caretakers throughout the school year that it is a nut-free classroom. I went home, found some signs online and printed them out and brought them back to school at pick-up. Stella took them into the office herself so that they could be laminated (proud mama moment). The first week came and went and they were still nowhere to be seen.

The next week I went into the office and the secretary gave me my signs and told me that they needed to say nut-safe. My signs said nut-free. Confused, I met with Stella’s teacher after school and we both went to the principal right away for clarification. I told the principal that our 504 plan states that her classroom is nut-free and asked if I could hang my signs. I was told that our school is “nut-safe” but yes, Stella’s classroom is indeed nut-free and that my signs were fine to hang up. Wonderful! Stella’s teacher hung them up right away, and at the same time she grabbed some wipes to have at her door for kids to use on their way back from snack and lunch. I was pleased.

Fast forward to this week. My friend alerted me that she walked past Stella’s classroom door and noticed that my nut-free classroom sign had been replaced with a nut-safe one. Sure enough, when I picked Stella up and later at back to school night I saw my signs were taken down and replaced with new ones.

What does “nut safe” mean anyway? I asked this question on my Cooking For Stella Facebook page today, as well as a few other food allergy forums. I wanted to know if I’m being nit-picky and difficult and making a big deal out of nothing. People chimed in with a variety of different interpretations. Nut safe means it’s a safe environment to eat nuts in. Nut safe means you can eat nuts, but please wash your hands. Nut safe means we can’t make any guarantees. The consensus was nut safe is: nothing but confusing.

I checked in with Stella’s teacher again today after school. She told me she noticed the different signs, but more because they had a different graphic and she hadn’t noticed that the wording was different. I shared with her my concerns, and she agreed that they are confusing and can send the wrong message. She also showed me a sign that she would put at the back table on rainy days when they would eat inside the classroom that said “nut free table.” But…if it’s a nut-free classroom as our 504 plan states, why is there a need for a designated nut free table inside a nut-free classroom? Shouldn’t a nut free classroom be just that? What is even more disheartening is the fact that eating in classrooms on a rainy day was brought up during our food allergy committee meeting. We talked about a few solutions to the problem, including on rainy days the class goes to the cafeteria to eat and utilize the nut-free table there. The teacher agreed that I need to speak with the principal.

I am sad. It shouldn’t be this hard. Look, I get it. The school doesn’t want to advertise a space is nut-free when it’s not a guarantee. Bottomline: they don’t want to get sued. I get it. I do. But do they realize what message they’re sending to me? They’re saying they care more about getting sued than keeping my kid safe, and that I can’t trust anything they say to me. Again, I understand the legality of it all but as a parent it’s insulting and hurtful. They should at least have the decency to come to me and explain why my signs are not acceptable, especially after our turbulent year last year.

I still remain hopeful that this year will be better than the last. Just have to work a few kinks out, right?

 

 

Food Allergy Committee Meeting

Last week I saw down with the superintendent, the principal, the school nurse, another mom of a child with a peanut allergy, a mom of a child with Celiac’s Disease, a mom of child without any food allergies but supports a nut free school, and an attorney that the school had brought along for our first ever Food Allergy Committee meeting. I gotta tell ya, my heart sunk when I saw the attorney, thinking this is not going to go smoothly.

The meeting lasted nearly two hours and we covered a lot of ground and I do feel like we’re moving in the right direction, albeit not as swiftly as I had hoped. I was happy that the attorney shared with us that she too is a mom and her best friend’s son has a peanut allergy, so she could understand our concerns and why we were meeting. We agreed that education was very important, and they gave us permission to have a food allergy awareness table at Open House. I’ve forwarded them links to buy or download signs to put up around school for Food Allergy Awareness Week. I told them I have found someone who is willing to come to our school to do an educational presentation on food allergies, which the nurse said maybe she could do her presentation when she does her yearly Epi-Pen training for the staff for the beginning of next year. I wish it could happen tomorrow, but at this point I’ll take what I can get.

We talked about the definition of a nut-free classroom, as that is what is stated in Stella’s 504 plan. I had asked them to be specific because I had a different interpretation of what it meant. I originally thought that a nut-free classroom meant that no child in that class would be allowed to bring nuts or nut butters to school. Their definition is that no nuts are to be allowed in the classroom for activities, celebrations or to eat, but students in that classroom can bring it in their lunch. Since their backpacks are hung outside on hooks, food doesn’t enter the classroom.

Except on rainy days. You know, because rain washes away the risk of a peanut allergy.

I should clarify- they didn’t say that, but that has exactly been happening on rainy days. Kids are eating their snacks inside the classroom and the teacher asks them to wash their hands, but Stella and two of her friends have all confirmed that the teacher asks them to do it, but no one ever has. Oh, and I should also mention- the teacher also eats nuts in the classroom. I found this out the day before the meeting when Stella told me on the way to school.  After picking my jaw up off the floor of my car, I asked her how she knew it was nuts. Surely, she must have been mistaken.

She described them as small, greenish and you have to open up the shell to get them out. Pistachios. No doubt about it.pistachios

I shared this with them, and they said they would address it with her teacher. And I gotta say, this is really hard for me. Stella is good friends with her teacher’s daughter (they are both in the first grade and were in the same class last year), and her teacher shares a lot of my same mama friends I’ve made at the school. I hate feeling like I have to call someone out- not my style, but that has been something I’ve had to learn to do this year. I have to hold people accountable and that is a very hard thing to do and I can’t say it gets any easier.

It was decided that snack time on rainy days would either be held in the lunchroom where Stella would sit at her nut-free table, or a nut-only table be made inside the classroom that could be washed down after. I’m unsure what was decided on (there was a lot of stuff to take in), but I spoke up that you can’t call it a nut free classroom if there are nuts being allowed inside. I said that I felt our 504 plan had been violated. The superintendent made mention that they would have to change the wording in our 504 plan stating that the classroom is nut safe rather than nut free.

Wait, what??? In all honesty, the way he said it coupled with their reasons why they can’t make the school nut free (liability, false sense of security, forcing people in a lower economic household to buy more expensive nut butter alternatives for their child’s lunch, etc.), it didn’t have time to resonate with me for me to speak up and say that I don’t agree. The lawyer also supported this and said they would have to do that, and with my head was spinning from everything else we had discussed it didn’t hit me until later. Changing the wording on our 504 would only serve to cover their ass. Ugh. Sooo frustrating! So this is how politics work. I don’t know who’s learning more this year, me or Stella.

Aside from that, the meeting went well. We talked about field trips and our concerns about kids eating snacks with nuts while they are far away from the school. I said, is it too much to ask parents on rainy days or field trips to not pack nuts in their kid’s lunch? The lawyer, to my delight, said that is absolutely a fine thing to ask parents to do. Then I took the question a step further and asked if it would be ok to just ask parents all year long to not pack nuts in their child’s lunch? The lawyer again said that that is a fine thing to ask parents to do. It was all I could do to not jump out of my chair and hug her.

If they won’t ban nuts at the school, this is the next best thing they could do to keep kids with a nut allergy safe. Just ask. This is what I’ve wanted from day one, and I still can’t figure out why they would be reluctant to just ask parents to not pack nuts for their kid’s lunch. How simple is that? The attorney asked the principal if she sends out newsletters and how often, and then asked if she could send one out the following week asking parents to stop packing nuts. I could not believe my ears!

The attorney whom I was so frightened to see earlier shared our concerns was in our corner! Not only that, but she was asking the principal to follow through with asking the parents and I hope she holds her accountable for what she agreed to do in the meeting. I still won’t believe it until I see it. But I feel like we’re making progress. Slowly but surely.

Ok, I’m sure I’m leaving out a bunch (two hours is a long time to sit in a meeting), but the bottom line is they are unwilling to make the school nut-free but rather make it a nut-safe school, and I feel a lot of what we talked about will move it in that direction.

So my next step is writing to the superintendent about the meeting and my concerns about changing the wording of our 504 plan. I also wanted to document our meeting for the school board so it’s not just the superintendent’s version. I’ve also began to draft a complaint to the Office of Civil Rights for violating our 504 and for all the missteps the school has had this year.

Like I said, I’m learning a lot this year. One of the hardest lessons is learning to hold people accountable. I’m usually not the type of person to pester or complain nag or create a big to do over anything, so this is a whole new experience for me. But it’s the right thing to do and a lot of the time the right thing is not always the easiest.

 

 

Today’s Meeting

Well, I had a meeting with the superintendent and principal today. I find it funny they requested to meet with me the day before the board meeting and that they had consulted with a lawyer this morning, but if anything that tells me that they’re taking this issue seriously (as they should be).

Not a whole lot got accomplished. They went over their policy (look! We’re in compliance!) and stressed that they wanted to work together (me too). Anyway, we talked about some things we still need to hammer out, like a clear definition of a nut-free classroom, how to regulate a nut-free snack time and the possibility of making our school nut-free or the grade level nut-free (still lots to discuss). I offered my suggestion of forming a food allergy committee that could meet throughout the school year and make sure everyone is up to speed on education and making/hanging signs and posters on campus, a suggestion that I think was appreciated and well received.

I came with the standpoint of understanding that this is all new and together we need to figure out how to make our school a safe place for all students, but this problem isn’t going away and there will for sure be more students down the road that come into this school with food allergies. We need to figure this out NOW. Like, YESTERDAY!

We basically talked about all the things we need to talk about but we are no further along than we were before the meeting. Hopefully we can make strides tomorrow night at the school board meeting when food allergy management is a discussion item on the agenda.

This is by far not my last meeting, but I’m starting to have a clear understanding that I will probably be in meetings as long as my daughter is in school. `

The next chapter

I did it.

After several meetings with the principal and the superintendent and still little to zero progress I finally wrote to the school board. All I’ve wanted this year is for them to send out a letter to all parents notifying them that there are children who attend our school with life-threatening food allergies and that a commonly packed food in their children’s lunch box could potentially hurt or kill another child. That and students clean their hands after eating. Oh, and a bonus it would be nice to feel like my daughter’s food allergies are be taken seriously. Those things aren’t asking a lot, are they?

But apparently they are. Because here it is, January. And still no letter home as promised in my first meeting with the principal the second week of school, and again in a meeting with the superintendent in October. Sure, sure! No problem! Yes, we support you and yes, we will send out an informative letter! Yes, we will make sure children are cleaning their hands after eating nuts at lunch. But snack time? We may be able to provide a nut-free snack for all students and we could have wipes available for children to use before playing on the playground…but we haven’t yet. And we’re not going to follow up with you about it, either. But don’t worry. There’s a nurse in your daughter’s classroom. She’ll watch her.

I guess my example of 13 year old Natalie Giorgi who died over the summer after eating something containing peanuts in the presence of her father who is a DOCTOR and the fact that they used three Epi-Pens to save her life didn’t resonate with them.

I was patient. I waited. Every week I looked for a letter informing us parents about children on campus with a deadly nut allergy (Stella isn’t the only one). It wasn’t until I arrived at school early one morning to train the substitute how to use an Epi-Pen and she had to ask what my daughter is allergic to and what an allergic reaction might look like that I finally lost my patience.

I wrote out a detailed timeline outlining every meeting, conversation, promise and misstep that the school has taken so far this year. It was a hard thing to do, but as one mom advised me- I had to hold every person accountable.

I consider myself a pretty nice person, and I think anybody who knows me would tell you the same. I don’t like conflict. I don’t like rocking the boat and I certainly don’t like calling people out when they have done something wrong. If you’ve upset me or made me mad the worse I might do to you is not tell you to have a nice day.

That’s right. Feel my wrath, mother fuckers.

Sitting down to write a letter and name names and hold people accountable for their actions was outside of my comfort zone. But it had to be done. Sifting through my notes I had taken this year (thank goodness I did!) made it clear to me that I had to write it, I couldn’t afford not to.

Friday I hand delivered a copy of my letter to the school board to the principal. She would be seeing it anyway so I figure it would be best coming from me. I was a nervous wreck but I felt good handing it to her rather than her getting a copy in an email down the line. I then walked into the front office with a sealed copy of my letter to each board member in a large manila envelope and asked how I go about getting on the agenda at the next board meeting.

I felt a HUGE weight lifted off my shoulders as I left the school. I knew I had done the right thing, but as my day wore on I began feeling really nervous. What had I just done? What can of worms did I just open? And worse yet, I was feeling guilty and awful that I had called people out. The principal. Stella’s teacher. The superintendent. All people I would inevitably have to see again and again. And now they all know I was a tattle-tale. I hurt their feelings. Heck, I may have ruined their day and their weekend.

I began to look ahead- what will happen at a school board meeting? Will I have to stand in front of everyone and plead again how important my daughter’s life is? Will there be parents there who will scream out at me that their kid has a right to bring a PB&J in their lunch? I’m not going to lie- I am terrified beyond words and I have no idea what the outcome is going to be.

So here we go. This is the next chapter. As my husband said to me, the ship has left the port. This isn’t about all these people. It isn’t about me. It’s about Stella. It’s about all the other kids who will go through this school with food allergies. And I couldn’t live with myself if I didn’t speak up and something bad happened to her or another child. I may have made some enemies but that’s a small price to pay for saving a life.

 

 

The battle with the school continues…

Ugh…I just checked what my last post was on here and my stomach did a little turn. Quick backdrop for those who missed it: I received a call from Stella’s first grade teacher telling me that neither she nor the nurse who is usually present in her class would be attending the field trip the next day (and therefore no adult who was going was certified to use the Epi-Pen). Rather than deny Stella the right to go with her class because of her food allergies we took the matter into our own hands. We did some drills with the Epi-Pen and showed Stella how to use it on herself. (By the way- I wholeheartedly recommend doing this with your kiddo not only for them but for your family as well. It gets everybody more comfortable with the idea and makes it less scary.) Anyhoo….in addition to our Epi drills I also arrived at school the following day to train the substitute and another parent who was going on how to administer the Epi-Pen.

I arrived early and introduced myself to the substitute and the sub said she knew that she had to grab Stella’s Epi-Pens from the office. Great. That was part of the plan. I then demonstrated how to use it with our training device, how to pull the cap off, where to put it into Stella’s leg, count for 10 seconds, then call 911. I also reminded her that there was a second Epi-Pen in case the first one failed. Pretty easy.

Then the substitute turned towards me and asked what sort of thing might cause Stella to have an allergic reaction? How would she know she were having an allergic reaction?

The hair on the back of my neck stood on end. I couldn’t believe what I was hearing.

I have been assured by the teacher, principal AND the superintendent that they take food allergies very seriously, and that anyone who steps foot in the classroom knows of Stella’s food allergies. That there is an informational sheet with Stella’s picture, food allergies and possible allergic reactions posted at every classroom. Every staff member at the school is aware. But this sub obviously had no idea as to why I was showing her how to use a device to save my daughter’s life. No idea.

I was dumbfounded. I sat outside Stella’s classroom for a long time and thought about going back in and taking her out for the day. I calmed myself down by reminding myself about the drills we had done the night before and how proud Stella was feeling that she could take care of herself. It helped that I had another parent who was going who was trained and familiar with Stella, and another parent who vowed to not take her eyes off of Stella the entire time and would be on the lookout for any student who had food (food wasn’t allowed on the field trip or this may have been a different story.) She also was kind enough to send my texts and pictures throughout the field trip letting me know everything was going ok. I still worried non stop all day.

I made an appointment to meet with Stella’s teacher to let her know that the substitute had no knowledge of Stella’s food allergies and wanted to know how her food allergies were being communicated to anyone that stepped foot in the classroom. Stella’s teacher was quick to say that the sub was fully aware of her allergies. Umm…no, I told her. She had to ask me what she was allergic to. She didn’t know what an allergic reaction might look like. That’s when Stella’s teacher offered that I perhaps made the sub nervous when I showed her how to use the Epi-Pen. OMG.

I went on to say that I felt very nervous and worried the whole day, that I almost pulled Stella out of class. Her teacher then told me that perhaps in the future if I ever felt that way then Stella should just stay home. Yeah. She said that.

This is exactly the kind of attitude and lack of empathy I have battled with all year long with the school. It is exhausting. To have to constantly feel like I have to plead my case for these people to understand that this is a life-threatening condition my daughter has is wearing on me. I am tired. And to be perfectly honest, I am starting to feel very embarrassed. I feel like I’m nagging about some non important issue, like wanting less White-Out in the classroom.

I am jealous of all the other parents who chose to homeschool their child. I feel like just giving up and throwing in the towel. Obviously you people don’t give a shit about my kid’s life.

Ahh….winter break was so nice to check out and not have to worry about this on a daily basis. It was nice having Stella home and knowing there is no one sitting by her at the table with peanut butter residue on their hands. She’s safe when she’s at home.

I am full of gratitude for having a huge support system of parents who do care at this school, and they give me the strength and energy to keep on going. Over the winter break I met with another mom who’s son has a peanut allergy in kindergarten at our school and we put our heads together on what we can do together next, and we’ve both decided it’s time to go above the principal and the superintendent (we’ve both had meetings with them and have been given emptied promises that things would change) and draft some letters to the school board and see if we can’t get on the agenda at the next board meeting.

I’ve spent the last several days agonizing over my letter, including a timeline of meetings, emails, and conversations trying to get it just right. I could fill up the whole internet trying to plead my case that my daughter’s life is more important than them telling a parent they can no longer pack PB&J in their kid’s lunchbox.

For all you other parents struggling with your school: don’t give up! It’s not just about your child, but given the sharp rise in food allergies there will inevitably be other children that will be walking your same path at your school. Be the voice for all these kids. Write everything down. Have meetings, go up the ladder and continue going up the ladder until there is a solid policy in place. Forget about being a nag- this is your child’s life.

Ok, I needed to give myself that pep talk! Back to my letter…will keep you posted on progress.

That awkward moment when you realize your little girl is growing up.

I got a call from Stella’s teacher today. The teacher informed me that she wouldn’t be at school tomorrow and therefore wouldn’t be going on the field trip, and neither was the nurse that is normally in Stella’s class everyday with her diabetic classmate. Now there is no one certified who is going to use the Epi-pen if needed.

When I told Stella our dilemma she told me she could just carry her own Epi-pens and not to worry (umm…there is no way will I ever stop worrying EVER). Another parent overheard her say this and agreed that Stella could take care of herself, which is ultimately what she will have to do the rest of her life.

I’m sure I’m not the only parent who has been faced with this kind of situation. I’m sure there are plenty of other parents who would feel they had no choice but to keep their child from going on the field trip. Believe me, if my son didn’t have a pre-op doctor’s appointment tomorrow I would have gladly rearranged my plans so I could go.

Perhaps you think I’m crazy, but I am confident that my daughter is capable of taking care of herself. We ran through some Epi-pen drills tonight and thought up different situations. We talked about what she could be feeling as her body was going into anaphylactic shock. We practiced using the Epi-pen over and over. We even used an old expired one on an orange to show her how it works and to not be afraid to use it- that it could save her life. It was not only good for Stella to practice the drills but for us as well. We talked a lot and hope she fell asleep tonight feeling empowered. Our little girl is growing up!

So….I’m going to let her carry her own Epi-pens tomorrow in her backpack so she has them on her if needed. I will also be talking to the sub and will show them how to use it, as well as flagging down a parent who is going so I can give them the Epi-pen run down, too. I’m pretty sure it’s not following the school rules to let a child carry their own medication but I don’t mind breaking a rule if I know it could save her life.

What would you do?

 

Progress: It’s happening

Although progress isn’t happening as quickly as we would like in the food allergy community, it is happening.

It’s been a bumpy start to the school year. I’ve been told that safety guidelines were in place and come to find out, they were not or had been changed without my knowledge or consent. Frustrating isn’t even the word to describe it. This is my kid’s life we’re talking about.

I’ve now clocked in 10 separate meetings with staff and counting since Stella started kindergarten last year, every single one the focus is her food allergies and keeping her safe at school. My last meeting with the principal, the school nurse and the teacher was a small victory- we now have a 504 plan in place, which the school has to abide by. The principal also said she would buy some food allergy books for the library so students could learn about them (I provided her a list), which I really appreciate. And she said she would be sharing my concerns with the superintendent. Cool, cool.

Part of what was discussed and agreed upon is that students eating nuts and nut butters will be monitored and be instructed to wash their hands after eating lunch (sounds nice and all, but have you seen the way kids eat and the way they wash their hands after eating?) and still, we do not have any safety measures in place for when kids eat their morning snack. They tell me it’s just too hard to monitor to know what every child is eating come snack time. I guess they can monitor food at lunch but not snack. Wait…what? So in a nutshell (pun intended), nothing has really changed except my level of frustration, which is now at critical level orange.

I would be at critical PMS-without-chocolate level red if I felt it was just my husband and I fighting to make our school a safer environment. A month ago I was feeling very alone and scared at what we were up against, but a lot can change in a few short weeks.

Before the 504 plan meeting, I had made contact with another food allergy mama living in Petaluma and she was able to help coach me on what needed to be done next at our school and gave me a lot of support with what we were up against. She has recently done a presentation in front of her school board and has made huge strides in her district. They are now trying to adopt a policy that if a child has a food allergy, the district would then have the flexibility to create a nut-safe school. I admire her so much and the timing in coming in contact with her could not have been better.

The day after my last meeting with the principal to get a 504 plan in place was “Second Cup” at Stella’s school. It’s a parent mixer put on by the PTO with the idea you can enjoy your second cup of coffee and talk with other parents and the principal. It also happened to be the same day as  Stella’s end of month class birthday celebration, which I had to bake cupcakes for. Seeing how I was already baking I doubled the batch and made close to 100 mini cupcakes to bring to Second Cup. I stuck a cute little sign that read “Dairy Free, Egg Free and Nut Free” and brought my award winning cupcakes to the parent shindig to hope spread some awareness and hopefully meet and talk to some other parents.

Well, what do ya know? I met another mom who has a son in kindergarten with a peanut allergy! She shared with me the terrifying story of her son and an autistic boy with a peanut allergy being fed a cookie with Reese’s Pieces on it while they were in preschool. Parents and teachers were all aware of their food allergies, but a parent had forgot and brought a tray of cookies with Reese’s Pieces on top for a birthday. The teacher didn’t catch it and her son took one bite, spit it out and told the teacher. Her son and the other boy with the peanut allergy became very sick and started vomiting. The teacher tried to deny that they were fed anything with peanuts, and it was through this mom’s own investigation that she found out what had happened. But the real kicker? The preschool also happens to be on the same campus as our elementary school. Gulp.

I’ve been talking and commiserating with this other mom for a couple of weeks now, and it’s given me great relief to know that I am not in this fight alone at the school. We’ve teamed up so that we can be a voice for our children and assure them (and us!) that school is a safe place for them to learn. We both agree that it is essential that we get together with the other parents of the kids with food allergies so that we can work together to form some kind of food allergy protocol for our school. Power in numbers, people!

Separate from meeting this other mama, another amazing mama (I do know a lot of them, don’t I?) has written to both the principal and the superintendent expressing concern that the school is allowing a lethal substance such as nuts onto school campus knowing that their are children deathly allergic to them. She has also drafted a letter to all the parents at our school alerting them that there are multiple children on our campus with life threatening food allergies to nuts, that contact made with nuts could be lethal to these children and are asking parents to voluntarily stop sending nuts to school. Signatures are being collected and parents are helping to give feedback so the final draft of the letter is pitch perfect with answers to commonly asked questions. It’s a sticky subject and every bit of feedback is essential to getting it just right. After every word has been carefully selected and signatures collected it will be shown to the superintendent, whom we hope to meet with at the end of next week.

Over a month ago I felt so completely overwhelmed and sick thinking about the mountain we were up against. It just seemed impossible to overcome the fact that the school does not see the seriousness of this issue, and that parents will inevitably think of me as an overly paranoid helicopter parent. But now I am feeling overwhelmed (in a good way!) by the tremendous amount of support we’ve received from so many.

As Stella’s teacher said to me, “we just can’t go around making the world peanut free.”

But we can sure try and make our school, can’t we?

 

 

The Nut-Only Table Update (or so I thought)

A few weeks ago I had a meeting at Stella’s school with the principal, her teacher and the school nurse to talk about what we can do at the school to keep her safe. I suggested a nut-only table where the kids who are eating nuts could sit at. That way, they could be monitored and made sure to wash their hands after eating since I was told it was too time consuming and not feasible to have ALL the students wash their hands after eating. The principal liked my idea and I was told they would start implementing it the next day.

This morning I saw the principal, who approached me and another mom and thanked us for coming to the PTO meeting last night. I took the opportunity to check in with her on how the nut-only table was working out in the lunchroom. (I had asked Stella about it but getting solid information from a six year old is like trying to crack an FBI informant). She then quickly pointed out to me the table that Stella usually sits at everyday with the nurse in her classroom that accompanies her classmate with diabetes. She remembered that Stella had gotten her blood panel done the day before our meeting and we were waiting on the results. I told her the good news we received last week- that Stella’s allergy levels to dairy and egg had gone down, so that told us that they were headed in the right direction of her possibly growing out of them. We also learned that some nuts didn’t show up on her blood panel this time and that she could potentially have almonds and hazelnuts (but the allergist advised us to still avoid them due to cross-contamination and not being able to discern between all nuts. Annoying, but I get it). We also received some bad but not unexpected news that her peanut allergy didn’t budge at all. Children who are diagnosed with a peanut allergy rarely grow out of them. She said she had been waiting to find out the results of her blood test and that she would be putting up a nut-free sign at that table tomorrow.

Wait….WHAT? What she was saying bore no resemblance to what we had discussed in our meeting. Nut free table? What happened to the NUT ONLY table idea that she liked so much? And I hadn’t realized that she had been waiting on Stella’s bloodwork to take action. Wait…WHAT? Was I in the right school? Was this the principal or the janitor I was talking to?

Of course, in that moment my two year old son bolted away and out of sight and I had to run and chase after him. By the time I caught him and turned around, she was gone. It didn’t matter. My son was not going to give me the opportunity to finish my conversation. Or any adult conversation I plan on having for the next year and a half.

After I got home I left a message on her voicemail that I would like to have a follow up meeting with her to discuss the nut-only table and some other concerns I have. I am waiting to hear back. I honestly feel that she thinks that having a nurse present in Stella’s class is good enough and I shouldn’t be asking for anything more. Don’t get me wrong- I am incredibly lucky that there is a nurse with her at all times. But just because a nurse is there doesn’t mean a kid with peanut butter on their hands won’t accidentally touch my kid.

I was venting to a friend this morning and she asked if I ever thought about putting Stella in a different school. The thing is, I love this school and all they have to offer. Their fine arts program goal is to foster a lifelong involvement in the arts through music, dance, drama, visual arts, storytelling and poetry (and in my opinion, the arts is what makes the world go ’round). They also teach their students to be stewards of the environment, to celebrate diversity, engage in the arts and develop life skills that I had to figure out later on in life. They even teach these kids how to garden and grow their own food!! And the parents at the school? The coolest collective group of adults I have ever met. No, I don’t want her to go to another school. Besides, I have a feeling I would still have to fight to keep her safe.

This is a learning process for me. I am learning how schools operate and what other parents are doing in their schools. The only thing we all have in common is that it’s a battle for each and every one of us. Until there are state and national guidelines on how schools handle food allergies, us food allergy parents are stuck trying to put our own guidelines in place.

 

First Grade Meeting

It’s amazing how much I continue to learn everyday about raising a child with food allergies. It’s a lot like playing Super Mario Bros- just when you think you’ve won the game it’s “Thank you Mario! But our princess is in another castle!”mario

This is Stella’s second week as a first grader. Kindergarten was great- all parents were notified on the first day of school that there was a child with severe food allergies in the class and the classroom was made to be nut free. Children washed their hands after every snack and lunch and we were fortunate enough to have a nurse that Stella was able to sit with every day in the lunchroom who was there to shadow another kindergartener with diabetes.

This year the school strategically placed Stella in the same class as the little girl with diabetes and it gives us great relief knowing there is a nurse present should Stella ever suffer an allergic reaction. I assumed that the other safety guidelines we had last year would be in place as well, but hey, this is my second year at sending my kiddo to a public school and perhaps I was being a bit naive.

I met with the new school nurse before the start of school and we went over Stella’s food allergies, her allergy action plan and talked about the safety guidelines the school had set in place for her in kindergarten. I had just assumed that it would be the same as kindergarten- nut free classroom, washing of hands after eating, notification sent to the parents, and eating lunch with the little girl with diabetes and her nurse.

One might think 1 out of 4 odds is pretty good but not when it comes to your child with life threatening food allergies. Come the first day of school and the only thing that was the same as last year was that Stella was eating lunch with the diabetic nurse.

Stella and I met with the principal, her teacher and the school nurse today after I had written to both her teacher and principal what my concerns were. I asked that the classroom again be made nut-free, kids should wash their hands after eating, and parents should be notified. You know…like last year.

But guess what? They told me that the kindergarteners were not washing their hands last year after they ate, and that it was nearly impossible to take the time to make sure they did. Huh? (Believe me, my head is swirling with the things I should have said in that moment, but at the time I was just too dumbfounded.) Then they pointed out that Stella didn’t have an allergic reaction all last year- so clearly she is ok, and that making kids wash their hands after eating is not only unrealistic in their day but not necessary. I told them Stella was very lucky. VERY. And that some kids can go into anaphylaxis shock by just an allergen touching their skin.

I asked if Stella could have a nut-free classroom like last year. Her teacher was surprised to hear that Stella’s class was nut-free even though her daughter was in the same class!! This was just a very real reminder to me that even though parents are notified doesn’t mean that the message will actually sink in. Holy crap was Stella lucky to not have any allergic reactions last year. I will count my lucky stars twice tonight.

I learned that for snack time the kids are dismissed out into the play area where they eat and then have recess, and that food is not being consumed in the classroom- phew. Backpacks and lunchboxes are kept outside on hooks so food doesn’t actually enter the classroom, which gave me some relief. They explained that it wouldn’t make sense to make her class nut-free if she were going out onto the playground with kids from other classes who could have nuts and food wasn’t being eaten in the classroom anyway. I was disappointed but I get it. But I’m still holding out on the possibility of making the school nut free- you won’t be hearing the end of this!

As far as lunchtime goes, I am thrilled and beyond lucky to have Stella be in the presence of a nurse every day. I wish all food allergy kids could be so lucky. Luckily Stella adores this nurse and the little girl with diabetes so no problem there. What worries me are the other kids who are eating. Have you ever seen a kid eat? Yeah, they’re not the most elegant at keeping food between their lips and off all ten fingers (and shirts and pants). I told them my biggest concern was a kid eating a PB&J sandwich and then going out on the playground and getting peanut butter everywhere they touched. If Stella were to then go down the same slide as them it has the potential to turn into a very dire situation where she would need immediate medical attention.

I suggested that there be a nut ONLY table in the lunchroom. That way those kids could be monitored and made sure to wash their hands or use a wipe after eating. (And just so you know- you can’t use hand sanitizer. Hand sanitizer is not effective in removing peanut residue.) I was happy that the principal took my suggestion and will be making a nut only table in the lunchroom that will be monitored. Victory!

Stella’s teacher will be notifying all the parents about Stella’s food allergies and the principal will be putting it in her newsletter to the school as well (but now I know that doesn’t necessarily mean anything). It does make me happy that the word is getting out that there are kids with serious food allergies, and making people informed is what’s going to keep our kids safe.

The other issue I brought up was that this year the kindergarten class at Stella’s school has 5 children with nut allergies, and they’ve made the entire kindergarten nut free. Instead of eating lunch in the cafeteria the kindergarteners will be eating lunch in the kindergarten yard (the principal told me this has nothing to do with the nut allergies- it’s just less chaotic to have them remain in their quarantined nut-free environment the kindergarten yard.) I wanted to start the dialogue about what was going to happen next year when these kids are in with the rest of the school and they aren’t as lucky as Stella to have a nurse with them. “Maybe we’ll be a nut free school next year” the principal said. To hear her say that as a possibility was music to my ears! And why, why WHY I didn’t then say to her, “Then why not this year?” I will forever kick myself for. But at least it came from her and I wasn’t the one that had to suggest it. It gives me a glimmer of hope.

As my friend and fellow loving and concerned mama reminded me after my meeting, this is just the first meeting. I can now think about the dialogue that took place, write down any questions or concerns and meet with them again. The door is not shut- it is just opening. My princess may be in another castle but I will never stop trying to find her.smb_toadstool211