open letter about our school going peanut free

I know what you're thinking.
I'm a hypochondriac mom.
Or I'm a helicopter mom.
Or I'm a stay at home mom who has too much time on my hands and likes to try and control everything having to do with my children.
Or I'm an attention hog who just wants everyone to focus on me and my child.
Or I'm a food zealot jumping on this "food allergy" bandwagon on a mission against peanuts.
Or I'm just selfish & like to throw my weight around because I can.
I'm probably even making up or exaggerating my child's condition to get my way.
Go ahead, pick your stereotype - I've heard them all.
And none of them are true.
I have five kids, aged 3-11. I don't have time to be a helicopter mom. In fact, I have hardly been involved in any school activities or functions of any kind during the seven years and three children I've already had in school.
I'm not a hypochondriac mom - I've seen my kids have seizures, high fevers with hallucinations, night terrors and sleepwalking, sepsis from skin infections, chicken pox that got infected, failure to thrive, a broken bone, more stitches than I can count, a near drowning and anaphylaxis from allergic reactions several times, to name a few emergencies. 911 has been called to our house exactly twice in eleven years of parenting through all these emergencies. Trust me, I'm not prone to becoming hysterical nor overreacting after this many kids.
And I definitely don't have too much time on my hands.
I'm not an attention hog, either - I don't feel the need to have other people focus on issues that are painful, or personal - especially when those other people are strangers to our family and circumstances.
I'm also not a food zealot because of food allergies - well, not willingly anyway. If you knew me before food allergies, you'd know I raised my kids on mac & cheese from the box, fish sticks, ramen pride noodles, boiled eggs and LOTS and LOTS of peanut butter & jelly sandwiches.
I'm not throwing my weight around because I can, either. In fact, I couldn't - this wasn't my choice and this was forced on me just like it's being forced on you.
And I only wish I were exaggerating my child's condition.
Four years ago I sat in my childrens' Allergist's office with my mouth hanging open.
"NO peanut butter?! As in, like EVER?!" I repeated, astounded and dismayed.
"That's right", He confirmed.
"But what about my other kids, they can still have it, right?"
"It can't be in your home at all, ever." He told me gently.
"What if they eat it outside and come in after?"
"That's really not a good idea either, they will have residue on their hands & clothes & mouths and if they hug or kiss or play with can trigger another reaction.", He explained.
"But, but...what if I wipe them down after they eat it?"
This was the conversation I had where I tried every way I could think of to compromise with what my child's Dr. was telling me. A few days before, my three year old son had given my eleven month old daughter a bite of his peanut butter and jelly sandwich, a common occurrence in our family of no food allergy history whatsoever.
I'd gone downstairs to throw some laundry in and when I came back to the top of the stairs, she was holding onto the gate and making strange noises. It also looked like she'd gotten into some blueberries, because the corners of her mouth were bluish. As I was trying to get the gate open, I noticed the strange noises were her trying to cry and gasp at the same time. I saw her bare stomach sucking in and out and exposing her ribs while she tried to breathe. I scooped her up and noticed hives sprouting right before my eyes, all around her mouth and eyes. Her face was swelling, she was drooling all over both of us and her mouth was still tinged blue at the corners and it wasn't blueberries.
This was her first anaphylactic reaction. I wasn't even sure until we went to the Dr. later and had her tested that it was from the peanut butter in the sandwich. I'd also given her antibiotics for an ear infection about twenty minutes earlier, I was sure (and hoping!) that was the cause. Luckily the Benadryl I had on hand seemed to take effect almost immediately and she recovered quickly.
Our lives changed after that. The Dr. told us the new rules we had to live by which included making her wear a Medic-Alert ID tag at all times, asking people to wash their hands upon entering our home and always keeping an Epi-Pen near or on her person. Despite all of these precautions, she's had three more anaphylactic reactions in her five years. One was in the grocery store, after touching part of the grocery cart and then her face, and one was in a movie theater (even though we covered her seat with a blanket from home). The most recent one was in our home.
Each episode was absolutely terrifying and followed the same pattern. First she gets itchy and breaks out in hives. Then her face begins to swell. Next she says her throat is tickly, then her stomach starts to cramp and she vomits - then she begins to have trouble breathing. I've researched enough to know that the Epi-Pens don't always work, especially in cases where the allergy is very severe. We're told that our daughter's is the rarer and extremely severe kind. I'm terrified the Epi-Pen won't work for my child one day.
So we lived like quarantine patients for a long time.
My five year old daughter has never spent a night at her grandmother's house.
She's never been on a playdate in another home, nor a sleepover.
She's never allowed to step into a neighbor's home for a drink of water while playing outside in the summer. If neighbor kids congregate at our house, we have to ask if they've eaten peanuts or peanut butter recently before she can play with them and they have to wash their hands if they're coming inside.
She doesn't go to friends' birthday parties.
She can't eat bakery cakes or treats.
She can't have chocolate unless it comes from a dedicated, nut-free facility.
She can't play at the mall play areas.
We just tried letting her trick or treat for the first time in her life last year, with gloves on, and then gave the candy away. Every other year she's had to stay in while her brothers go trick-or-treating.
When she joins gymnastics, we ask the studio to go peanut free. They post signs, remove nut foods from their vending machines and have the other students in her class wash their hands before starting the lesson. Her dance studio does the same. When traveling, we notify the airlines and they make our flight a peanut-free one. When we take her places like Disneyland, they work with many food allergy organizations to ensure a safe and fun trip for even life-threatening level peanut allergies. When staying at a hotel, we ask for food allergy rooms and considerations.
We've learned to live with it. We're finding out she can still do normal things and have normal experiences, with planning and care. Sometimes this lulls other people into thinking we don't have to take special steps for her, because they might not realize all the planning and precautions that have gone on behind the scenes.
The biggest hurdle we face in raising her is people who just don't want to get it. Or who don't want to set aside their annoyance at how this inconveniences *them* to try and get it. I've had more people tell me than I can count how their child "won't eat anything else" but peanut butter and this would be an incredible hardship on them and their rights shouldn't be disregarded like this.
When faced with being told that my daughter's life is equal to a favorite convenience food, I just never quite know what to say - I'm astounded. As I mentioned, I have five children - and actually two of them are food allergy sufferers -and the total restrictions these food allergies place on us are nothing short of mindboggling.
Because of this, I've learned that kids will eat what is available to eat, eventually. There are also great alternatives today, like sunbutter (from sunflower seeds) and tahini (from sesame seeds). If my kids truly would not eat anything but one food item and their school suddenly told me that one item was no longer allowed to be brought to school because it could harm or kill another child...and they didn't want anything else...then I guess my children just wouldn't eat until they got home from school, if that was their choice. I doubt they'd choose that option for very long! No kid is going to starve to death without peanut butter. They'd find another option rather than go hungry, trust me on this.
I know people are going to be angry that our school is being made to go peanut free for my daughter. I know there's a lot of confusion and misinformation out there about food allergies. I know everyone knows somebody who says their child is allergic to a food and then sees that child consuming it, only to be told "It's okay once in a while - or in small amounts". This isn't the same thing. This is a true, IgE mediated, multiple test verified anaphylactic allergy. We tested her at eleven months and we tested her again at five, skin and blood tests each time.
The Dr. tells us with a case as severe as hers, there is no chance she will ever outgrow this. It's an incredibly helpless and terrifying feeling to know that my daughter can die from just touching something and then touching her face. Some days I don't even want her to leave the house, ever.
When her Dr. retested her at five and instructed me that her school would have to be peanut free, I was met with resistance. I was told how "inconvenient" the other parents would find it. I had questions fired at me like,
"How can you take her out in public, then?"
"How do you go to the grocery store with her - do you ask them to go peanut free?"
"I heard you went to Disneyland, how can you do that and ask us to go peanut free?"
"Why can't we just put her in an empty classroom to eat her lunch?"
I felt ridiculed, I felt disbelieved and I felt discredited. How anyone can think a quick trip to a grocery store could pose the same risk as being in a school with potentially 400 other students eating peanut butter, for seven hours a day, five days a week is beyond me.
Then, incredibly, the two school officials I was meeting with began discussing how hard it would be on their children not to be able to have peanut butter. They joked that their children would starve to death - they talked to each other and agreed that it would be awful not to be able to have peanut butter, that they wouldn't consider it a normal childhood without peanut butter. I sat there and wondered,
"If my child were in a wheelchair, would they tell me how awful it would be if *their* children couldn't run? Would they tell me how glad they were it wasn't their problem?"
But by the way, we still just want to discriminate against your child with her medical disability by putting her into a secluded room to eat her lunch instead of making the whole school safer.
Our school is supposed to have "nut free classrooms". One of the school's biggest objections to going peanut free for my daughter was that she will spend most of her time in the classroom, and they are already nut free. Just this past St. Patrick's Day, an assembly was held at lunch time, requiring that all students eat their lunches in their classrooms.
I have three children at this school currently and one of them came home to tell me that in his classroom, a child had a peanut butter and jelly sandwich. Another child spoke up and alerted the teacher that he had peanut allergy. The teacher sent the allergic child to the principal's office to eat his lunch, while the peanut butter and jelly sandwich was eaten in the classroom. Had that been my daughter, upon her return to the classroom if there had been any peanut butter residue anywhere and she touched it and then touched her face, she could have had a life-threatening reaction.
This is a perfect example of why the Dr. and the law can mandate that schools go peanut free for children with life-threatening cases of peanut allergy. Rules like special tables, special areas, special times that nuts are restricted are open to interpretation and subject to change based on changing circumstances. I don't know what happened in this case. I don't know if the rules were being flagrantly disregarded, misinterpreted or if this was an exception, but how would you feel if you were told other students could play with loaded guns around your child at your school? Dramatic example, I know - but this is exactly what it feels like to the parent of a child like mine upon hearing that half-measures will be taken.
I try, but I truly don't understand the objections of other parents, the anger and the protests I have seen in the press lately about cases like this. Before my own child was diagnosed and we had to accommodate another food allergy child in our first son's kindergarten class by eliminating not only peanut products but also egg, we were also annoyed. But we never formed protest groups, we never complained to the school or the teacher.
We asked more questions, we talked to his parents, we learned more about it! The bottom line was we didn't want that child to be hurt. And we certainly didn't want to be the ones that hurt him.
I wonder if people who trumpet and rave about their child's right to peanut butter have ever seen their child view anything traumatic in real life. I wonder if they know what their child is going to have to live with, if another student they care about and spend time with falls down and starts choking, vomiting and crying while scratching at their throat as they wet their pants and struggle to breathe.
I know what is going to happen to those children, because I've seen it happen to mine when my daughter has reacted. They are going to panic, they are going to be traumatized, they are going to feel immense guilt -even if they are in no way to blame - and they are not going to get over it for a long time. They are going to become afraid it can happen again, maybe even to them - they may want to avoid things that are connected to the incident, they could have nightmares.
Would you really rather risk traumatizing all those additional children rather than err on the side of caution and just stop sending something you've been told can kill another child, to school?! I have often had the macabre thought that I wish just one of my daughter's reactions could have been caught on video. One viewing and nobody would question what needs to be done for her.
I hope it helps the parents at our school to know that we do feel badly about this. I've dreaded this day since she was diagnosed four years ago. I hoped and hoped she'd outgrow this against the odds and we wouldn't have to deal with this in a school setting.
I spend my time helping other families learn about living with food allergies. I spend my time coming up with safe foods and finding ways to share them with others. I spend my time finding ways to educate others about this issue. I assure you, every step that could have been taken by us not to inconvenience others has been taken. And now we need your help. We can't keep her safe by ourselves anymore. I know you, you're our neighbors, you're our acquaintances, you're our friends, you're on facebook with me, your kids are in activities and on teams with my kids. You're our community.
I see you stand up for your children, I see you advocate for your children, I see you fight against the odds for your children. I see you keep your children safe and healthy. My husband and I have both always worked in the helping professions. We help keep our community safe and healthy both personally and professionally. All we're asking is that we all work together to keep doing this for ALL our children at school.
I'm 100% approachable on the subject of specifics about my daughter's care and condition, please feel free to email or comment if there's anything further I can answer or explain.