As an allergy parent, you do everything to keep your child safe. Work with their school, provide safe alternative foods, make sure they wear they MedicAlert jewelry, make sure they always carry their Epi-Pen or Auvi-Q...

But did you ever stop to think what would happen if the person responding to your child in an emergency/anaphyactic situation was not familiar with your child's epinephrine device?

This realization just hit me last night as I was chatting with a friend who happens to be a local emergency responder.

We had just replaced all of our expired Epi-Pens with the new Auvi-Qs and had a trainer lying on an end table, so my children could practice and get more familiar and comfortable with it. My friend picked it up, turned it over a couple of times and asked, "what's this - - a cell phone battery?"

I guess I never stopped to wonder how and when emergency responders get trained and how long it takes for a new device procedure to trickle down to them. If they only do in-service trainings a couple of times a year, I really don't want to wait and hope my child doesn't need their help one day at school, before the responder has learned about the Auvi-Q!

When we first got them, I showed my children's teachers and all other school staff how they worked and left a trainer for them to teach substitutes and new employees, but I never thought about the emergency responders in my city.

I promptly gathered all the trainers we could spare, taught my friend how to use one and told him to keep one to train his colleagues. I also asked him to deliver one each to the other 2 fire departments in our city.

My husband works for the city, so I sent him one to donate to the police department, as well.

This is my allergy tip for other allergy parents. Consider calling your local PD and/or Fire Dept and offer to donate an Auvi-Q trainer. Show them how to use it when you bring it in. Even if they don't have a formal training session scheduled anytime soon, ask them to make sure all emergency responders familiarize themselves with this product.

They might already know all about it, but you also might just help save a life if they don't!

Why does my kid have to be forced to celebrate your kid's birthday at school in the first place?

Somebody shared the article above with me last week. I normally don't have the desire, time or energy to jump into the negatively fueled discussions about food allergies in schools anymore. However, after reading this article I had to write a rebuttal to point out a few things I think the author might be missing.

Let me start this article by saying that I have always been clear on the fact that I don't send my kids to school to have parties. Food allergy issues aside, it has always bothered me that part of choosing public school for my children has meant allowing more occasions than I can shake a stick at for eating junk and party food.

Even before food allergy issues reared their ugly multi -heads in our family, I didn't agree with the excessive amounts of unhealthy treats that my kids were bombarded with at school on a weekly (or more!) basis. Birthday parties for a classroom of 25-30 students meant at least one birthday celebration a week. Then there were holidays. Then rewards of food treats for reaching a classroom goal - usually a pizza or ice cream Friday. Don't forget the PTA ice cream social or the end of the year hot dog and ice cream picnic on one specific day, as well as all of the individual class room parties for the same occasion. If I want my kids to feel like they are doing something special for me on Mother's day, there's Muffins for Moms. If my husband wants the same on Father's Day, there's Donuts for Dads. There are also the activities like Walk to School Day (to promote exercise and getting outside) that ends, ironically, with a feeding frenzy at a Krispy Kreme laden table. The foods at all of these celebrations are always convenient, easy and terrible for your health. Krispy Kremes, store bought cupcakes and candy and pizza seem be the party foods of choice at our school.

The Kindergarten teacher likes to bake a gingerbread cake in the classroom and bring in cookies shaped like the individual United States when she teaches the kids geography. The remedial reading teacher has a jar of candy to offer as rewards for a job well done. So do a few of the other lower grade teachers. The Safety and Service Squad students get hot cocoa and pizza every so often to reward them for their hard work. Then there's the cupcake sale during class hours so students can go buy and eat cupcakes as a snack during class time (for a good cause!) and we have fundraising Bagel Day once a month for the same reason. We also have a Field Day full of outside sports and athletic activities that ends in popsicles and ice cream bars for the students. I could go on and on.

We probably could have gotten away without feeding our kids dinner for most of the school year with all of the ruined appetites and extra calories they were getting at school.

Then our district consolidated and our classrooms bulged to the bursting point and teachers realized it was simply taking too much class time to celebrate birthdays with parties during class time. Thankfully, the most frequent excuse to help increase the rate of childhood obesity and potential for adulthood diabesity in our local students was banned. We now recognize birthdays with a special routine, privilege or non-food keepsake in the classrooms.

Fast forward to today, where we have since had five kids in seven years, six years ago. They're all in public school now. All five are intolerant or actually allergic to dairy and completely avoiding every trace of it and the three younger ones all have multiple severe to life-threatening food allergies. Not that you'll remember (because even I barely can) and not that it really matters (because the bottom line is it means they can't eat ANYthing unless it came from home) but their allergies are:

Our school eliminated the classroom birthday parties and restricted peanuts from the entire premises and tree nuts and peanuts from the class rooms, but the rest of the food- in- the -classrooms-occasions continue. I used to try and keep up by making my own safe and healthier version of the treats provided so my kids wouldn't feel left out. Besides feeling like a Grinch every time I had to explain why I would not be contributing to the class party fund (ummm, because I have to try and figure out how to make a "dirt cup with worms" without being able to use 'real' pudding, oreos or gummy worms and it's going to cost me quadruple the time and money it is going to cost any non-allergy mother to include their child in this holiday party?),  I resented that my kids were being fed sugary crap in the middle of the day and taught to associate bad choices in food with happiness and fun at a holiday.

I also resented them coming home looking like my 4th grader did 2 weeks ago and having no idea whether it was from traces of foods in the classroom or industrial cleaners or what.

When foods can harm or even kill your children, you tend to lean toward de-emphasizing foods as a central part of bonding or socializing and focus more on the meaning of the occasion or the relationships of the people involved. At every turn, school and other well-meaning parents were undermining my attempts to keep my children safe and included. Not to mention that with five kids, it was almost impossible to keep up with the expense and effort of all of their classroom parties.

The parties aren't fun for food allergy kids. They are exclusionary, they are anxiety-inducing and for many, they cause uncomfortable reactions. The author of this article specifies that she wouldn't expect life-threatening allergy students to be exposed to their allergens, but anyone with lesser allergies should just learn to deal with it. Their parents should figure out what to do for them and her child should not be denied the right to their party because of non-life- threatening food allergy.

That goes for the little girl in my son's class with Celiac Disease who gets a stomach ache every Bagel Day and has to ask the teacher if her classmates can please wrap up their bagels. It goes for the little boy who is embarrassed about his lumpy, homemade dairy and soy free cupcake that would rather stuff it back into his lunchbox than be asked or teased about not getting one of the "normal" ones everyone else is eating. It goes for the diabetic kid and the vegan kid and the kosher kid and the GMO free, all organic kid and it goes for the ADD/ADHD kid who doesn't get to eat processed sugar or dyes.

 In America today, every classroom is estimated to have at least 2 students with food allergies and 1 in 3 children headed for diabetes ( and 1 in 3  with obesity, but let's ignore all of them and their needs and what these foods are doing to them because "normal" kids have a right to their unhealthy foods wherever and whenever they want.

If I were having a conversation with the author, I'd love to ask where the sense of entitlement comes from that causes her to feel that every student in her child's classroom has to celebrate her child's birthday, anyway? Just as she asks how allergy parents dare to inconvenience her child's right to allergen-laden party food, I would like to ask how she has the audacity to take my child's educational time away to encourage poor eating habits in a nation plagued by an epidemic of obesity and increased potential for adulthood diabetes in our children, as well as Celiac Disease and food allergies?

Won't her child get a party at home? Won't that child have a chance to celebrate with friends over the weekend? How many times does her child have to eat junk food and serve it to other people's kids who may not even have been interested in attending her child's party, if not compelled to do so by being in the same classroom? If we allergy parents should keep our "preferences" to ourselves, shouldn't you, also? In fact, isn't the intrusion of your non-curriculum based party in a public school the only reason we have to speak up in the first place?

 Here's an idea: you keep your parties out of our child's classroom and we'll keep our food allergy requirements out of your life.

My youngest son has skin allergies in addition to his anaphylactic ones. Holiday parties almost always result in him breaking out in hives, turning red and scratching incessantly. On their Dr.s advice, I finally stopped trying to provide their own foods so they could feel included and just started bringing them home every time there is a food-based event in their classroom. Before we started doing this, this is what my skin-allergy child looked like for most of his year in Kindergarten:

I know the author generously makes allowances for life-threatening allergies and concedes that classrooms should not have parties with foods that contain those allergens (and I do thank her on behalf of my child who has had several anaphylactic reactions), but this is what a child with skin allergies (i.e., open skin disorders, eczema, atopic dermatitis, etc...) might be like after a day of being exposed to and in constant contact with his allergens:

Keep in mind that this photo was taken at 4 am, and yes, that's blood on his wrist where he scratched his hives wide open after being in itchy torture all night. It's not life-threatening by any means, but I guess my kid feeling like this isn't worth as much consideration as your kid having a cupcake in the classroom.

Foods need to be removed from classrooms. More and more schools are realizing it just isn't worth the risk anymore. Food allergies are already at epidemic proportions - and on the rise. Most serious reactions occur in previously undiagnosed children.

Eating in a lunchroom surrounded by their allergens is already the riskiest part of most food allergy students' days. However, a lunchroom gets the tables cleaned in between lunch sessions. A student is only sitting there for about 20 minutes at a time and it's usually a very large, airy room. When foods are brought into the much smaller and more contained classroom, the parties can be for 30 minutes - or they can be all day. Nobody has to clean every single desk when the party is over. Children aren't made to sit down in one place to eat, but can mill and wander around, spreading cross-contamination everywhere.

 So, if a school keeps foods in the cafeteria only, an allergy child is at risk of direct exposure and cross-contamination for roughly 20 minutes a day. In a classroom party, that risk goes up to 7 hours a day. Add up all the occasions most schools have for bringing foods into the classrooms and multiply by that 7 hours and you might begin to understand why allergy parents would ask you not to bring in items containing their child's allergens.

Why couldn't we celebrate with non-food items like games and activities? Children could make memory books and sign them for each other. They could write warm fuzzies to each other about something they admire about each other. They could exchange themed pencils or Silly Bandz or the Crazy Loom bracelets all the kids are making today. I know I'd much rather chip in money to help pay for parties like this than for junk food. I know my children would cherish the keepsakes from these parties far more than the stomach aches and sugar jitters some of their classmates end up with.
 The schools will save wear and tear on the carpeting in the long run, too.

 I hope this helps to answer the entitled question of the article I am responding to. As far as we food allergy parents are concerned, your child can have all the birthday parties s/he wants. Just not where our children have to be unwilling victims made to feel like their health and safety come in second place to a party food.

today's dose of humility.

i never saw it coming today.
just when you think your kids are finally old enough
to observe social decorum and not humiliate you
into a puddle on the floor - - don't.

we're at the allergist's office, getting jonah's weekly shots.
it's crowded.
the dr.s are helping do the shots.
two of them paused between patients to have a casual conversation with me. 
of course there had to be half a dozen nurses
in the crowded shot area, as well. and at least five patients.

a well- accessorized woman walks past on her way out when suddenly jonah exclaims,
"i know what she has! she has a SNATCH! my sister has one, too! jovie loves hers! she got a pink one!! right, mumma??"

funny how the heat of extreme shame and humiliation can be felt so differently at different times. this time it felt like it was starting behind my eyeballs and creeping down from my scalp simultaneously. i felt my ears glowing. but the backs of my legs felt afire, too. interesting, right?

all conversation came to a screeching halt. all eyes turned to my very loud son, and then scathed their way over to me. i could see the dr.s' eyes start to search the room frantically, for a way out, any way out. a nurse's mouth hung open. a patient clutched her young child to her ample bosom in horror. another nurse dropped the basket of stickers, seemingly in slow motion.

oblivious, he continued in his quest for confirmation and validation,
 "right, mumma? you know? jovie has a SNATCH like that, but her SNATCH is not so big - she can't put anything in it
 but her epi-pen..."

i saw my hand starting out toward his mouth seemingly of its own accord, disembodied from me, as if even my own limbs would dissociate themselves from this abominable public shame. hand clawed into a clamp to press over his mouth. 
possibly hard enough to dislodge teeth.

"that's not called a SNATCH, silly," jovie interjected imperiously, visibly pleased to be correcting her older brother, 
"it's a CLUTCH! and mine isn't pink, it's ROSE."

snatch, clutch, anyone could make that mistake!
 it happens to other people too, i'm sure. 
i'll be hiding in bed for the rest of my life if anyone needs me.

Elderberry Syrup Recipe

i have used elderberry syrup for years (in conjunction with plenty of vitamin d in the form of cod liver oil for optimal immune function) for my entire family to stave off the bugs during the darker, colder months. recently i discovered that my favorite brand has more additives and ingredients than i think are beneficial or health-promoting. therefore, i've decided to throw my hat into the ring with all the mamas who make their own. 

i chose to add echinacea for extra immune-boosting support, ginger for sensitive tummies and cinnamon to help regulate all the sugar from the honey (which is necessary as a preservative). having multiple food and seasonal allergy children, i only use raw local honey for the added allergy benefits. i divide it with manuka honey for the amazing anti-viral and anti-bacterial properties - i'm convinced we've already avoided the strep throat that is rampant in the public schools all 5 of our kids attend right now.

 if comparing our rate of illness to classmates isn't convincing enough, in our house the only one who avoids taking elderberry syrup preventively during the entire school year is my husband. and guess who is the only one that gets sick every winter? he's got a nasty cough and sore throat right now, in fact -while the rest of us have successfully fought it off for a couple of weeks by taking elderberry preventively AND at every symptom! hubby is taking it multiple times daily now and still able to go to work and eat regular meals, so i know it helps lessen the severity and duration of illnesses when taken after the onset of a bug, but our goal is complete avoidance!

here's how we do it:
starting on the first night of school, we begin taking 2 TBLspn before bedtime, along with the appropriate dose per child of cod liver oil and probiotics. once we lose the summer sun, we need all the vitamin d, good gut health and immune support we can get here in the dark-dayed middle west. if anyone complains of tickly ears, stuffy or runny nose, sore throat, headache or queasy belly, they get 2 TBLsp every 3-4 hours, sometimes more if the symptoms come back more often. i've done this even with my toddlers and never had anyone feel sick or suffer any side effects from "too much elderberry". we also make popsicles, fruit smoothies and even coconut milk ice cream out of it for sore throats and turn it into a natural soda with sparkling mineral water if anyone is vomiting. for our family of 7, we double the recipe below and it usually lasts us a couple of weeks, with enough extra to share a bottle or two with friends.

we also reuse tiny extract or essential oil bottles and send small amounts to school with the kids for any extra immune boosting needed during the school day when illness is trying to invade us at home or is present in the classroom. whether they feel symptoms or not, i encourage them to drink the tiny bottle with their lunches at school. 

4 C distilled/spring water
2 C dried elderberries**
1 1/2 organic broken cinnamon sticks
2 TBLsp pure dried cranberries * 
2 TBLsp pure or blended dried/powdered echinacea*
2 Tblsp dried/grated ginger root

( *these ingredients can be found in a pure form in better quality (single ingredient) herbal teas, as well - and you can use the contents of the tea bag in this recipe.) 

(** families local to the royal oak, michigan area can order 'frontier' brand elderberries through Nutri-Foods health store on main street in royal oak and save yourself the cost of shipping incurred when ordering online).





10 oz - 1.5 C manuka or local raw honey, adjusted to taste. 


(taste clarifies and "brightens" after refrigeration overnight. enjoy in good health!)

that still, small voice

today 'lou's soul-searching discussions for this morning's soak & seal turned theological. 

he asked me, 
"mumma, do you b/l in god?"

i replied, 
"honey, i just don't know for sure. i don't like to tell a fib and say i do just b/c everyone else does - but i also know i don't know everything and i could be wrong if i decide he doesn't i just keep an open mind and learn from everyone else who might know more than me about it. it's hard for me to understand a god who loves us but never comes to see us or talk to us."

he considered carefully before replying, ducking his head and blowing bubbles in his bucket soak in consternation.
"well, he's a spirit, so maybe he comes but we can't see him with our normal-human eyes. i bet superman could see him. or maybe he looks like a normal person and we don't know its him. and he DOES talk to us - our heartbeep is him talking- can't you ever hear it?"

by now i had him sitting on the half-wall, applying his lotion from scalp to toe. i felt my mouth curl into a smile at his interpretation of "heartbeat" and what his great ellen had once told him about hearing god speak in her heart. i tried clumsily to explain the symbolic meaning of hearing god in your heart, but he waved me off impatiently.
"your boobies must be too big to hear yours, listen to mine!"

and he thrust out his scrawny baby chest at me.

i laid my ear obligingly over his rack of ribs and listened contentedly to 

tha-thump, tha-thump 
rhythm of his toddler-sized heart.

i smiled benevolently at him and told him what i heard. just a
tha-thump, tha-thump,
no words, unfortunately.

at which report he smiled just as benevolently back at me and advised,
"your ears must not work so good either. that's not saying
"tha -thump, tha- thump",
it says
"love- ya, love-ya"
- i hear it every night when i lay down to go to sleep and everything is quiet."


orange julius/cream cooler and shamrock shakes for the rest of us!

Here is an allergy-friendly and healthier option to some popular shakes.
My allergy kids have actually never had traditional shakes and they went absolutely wild over these. I made them every night for a week and put one in his lunch daily and my tiny failure to thrive guy gained 2 lbs in 2 weeks!! They even tasted better than the "real" thing to hubby and I and other friends who've had the fast-food versions. i originally tried some of the alternative recipes being shared amongst food allergy friends and healthy eaters on FB and this recipe is how i ended up tweaking and modifying them. i shared my recipes on my FB page, as well - and got many rave reviews, so i've decided it's worthy to be on my food allergy blog. enjoy!

Shamrock Shake/
Chocolate Chip Mint Shake

1 can/ 13.66 oz whole coconut milk 
(we prefer thai kitchen brand)
13.66 oz other alternative milk (hemp, rice, soy, or almond if allergies permit)
(i use the empty coconut milk can to measure and dispense the 2nd milk)
4 Tbs raw, (preferably local!) honey
1 tsp vanilla extract
1 tsp peppermint extract (can sub approx 10 whole mint leaves if preferred)
(can increase carefully for stronger flavor - a little goes a long way!)
1 avocado (can sub 1 1/2 bananas if preferred)
1 small handful kale/spinach/dark green leafy (for color)
2 cups ice
1/3 C chocolate chips (optional - we like 'enjoy life' brand)

blend and enjoy! you can make this thicker by adding more avocado, if desired. 

Orange Cream Cooler/
Orange Julius

1 can/ 13.66 oz whole coconut milk 
(we prefer thai kitchen brand)
13.66 oz other alternative milk (hemp, rice, soy, or almond if allergies permit)
(i use the empty coconut milk can to measure and dispense the 2nd milk)
4 Tbs raw, (preferably local!) honey
1 tsp vanilla extract
1 tsp orange extract 
(can sub approx 1/2 C fresh orange or orange juice if preferred - adding about 1 tsp of grated orange peel really boosts the orange flavor, too!)
1 avocado (can sub 1 1/2 bananas if preferred)
1 small handful kale/spinach/dark green leafy 
(optional - it's going to be a very pale green anyway b/c of the avocado, so omitting it won't take away the green; leaving a dark green leafy in would only be for nutritional purposes -it doesn't affect the taste at all).
2 cups ice

blend and enjoy! you can make this thicker by adding more avocado, if desired. i haven't tried new flavors yet because we are still so excited to have some familiar old favorites again, but i am sure you could switch out the fruit or extract and make a strawberry/pomegranate/elderberry/blueberry/whatever- you- like- one, too! 

sweet weanling

i gave in this morning. 

an hour before the alarm was due to go off, i slinked from my bed and stole 'lou from his, tiptoeing with his sleeping form like a thief in the night. 

i mashed him up against me, head tucked under my chin, his legs curled up and tucked into my belly with a toehold secured at the tops of my thighs. 

i stroked his back, i squeezed his palm-sized babycakes, i snuffled his sunshine-and puppy-dog hair.

i curled his mini-palm over my lips and put a secret kiss there to get him through his day, my mouth fitting perfectly into his little hand.

i watched him sigh, silken lashes fluttering against his porcelain cheek. he dreamt of nursing, lips puckered in a kissy-pout, working his dream-milk out in a rhythmic suckle that matched the beating of my heart - slow and languid; utterly content.

i nibbled his little banana chip ear and whispered,
"what are you dreaming about?"
without so much as fluttering his lashes, he whispered back huskily, 

as if they were one and the same.

just as i was drifting off, he pulled me back with his lispy little sleep-whisper: 

"you can just steal me today, tomorrow i have to be big again."

my last sweet weanling, how can 5 1/2 years of nursing suddenly feel like the blink of an eye when it's done?

the beginning of the end

here we go - the beginning of the end. 

'lou has been nursing once every day or every other day for weeks now. he just went 3 days w/out asking and then wanted to nurse tonight. for the 1st time, he told me he can't get any milk.

he's 5 yrs and 24 days. after 12 3/4 years of non-stop breastfeeding, i'm almost done. if you spaced out how many years each kid nursed for consecutively instead of con
currently (due to tandem and triandem nursing), i normal- fed my small children 23 1/2 years of human milk.
out of 5 kids, my youngest weaner was 3.5 and my oldest was 5 yrs and 7 mos.

it was hard. it was uncomfortable. it was not always approved of or understood. but it was my duty and privilege to provide for my babies and i can look at the end of the road with fierce pride that i did it for as long as they needed it. i will never ever regret not giving them their best, most essentially necessary start in life.

i especially love knowing they nursed to an age that they will always remember it. i hope it is one of their most enduring memories of me all of their lives. never were we all as in sync, bonded, content and still enough to look into each other's souls as when they were nursing.

tandem nursing jovie -5 and 'lou - 3 1/2

'lou, 4

tandem nursing jovie, 2 1/2 & jonah, 3 3/4 while pregnant with 'lou. they always held hands. :-)

nursing 'lou in his hospital bed in denver at 4 3/4.

little lactation consultant in the making - lilmama (22 mos) gives up her own booby to help make sure new baby 'lou latches on and nurses well right after his home breech birth. one of my fave nursing photos ever. 
professional photo by

tandemstacking jonah, 3 and jovie, 18 months. 
biggest one goes on the bottom!

1st time ever tandem nursing - almost 13 years ago! jake, 17 mos and bo, about 2 hours.

jovie held 'lou's hand while tandem nursing the same way jonah use to hold hers before he weaned.

tandem nursing a preschooler and toddler in public "discreetly" - this is what it looks like.

nothing else helped reduce sibling rivalry and promote bonding and contentment with more than one child at once better than nursing multiples. best parenting and health tool ever invented, bar none! 

one of the last photos of my last child nursing. 'lou, 5.

like climbing mt kilamanjaro, but he wasn't about to give up!
professional photo by

putting two and two together...'lou, 10 minutes old. 
professional photo by

an experienced breastfeeding dad teaching his new son how to latch. 
professional photo by

tandemstacking newborn bo and 18 month old jake.

3 yr old nursing bo helping to induce labor after the spontaneous rupture of jonah's membranes at 37 weeks pregnant. professional photo by New Life Photography » Photos by Lesley Mason

5 kids at LAX, baby is hungry and w are rushing to meet planes and problem! pop him in the mei tai carrier and he nursed until he fell asleep, through all the frantic hustle and bustle.

she knows how to feed her babies the basics to get an optimal start in their dolly lives!

a boob's eye view of tandem stacking! i love how they always hold hands or rub each other's heads when tandem nursing.  jovie and 'lou, about 2 and 4 here.

thousand of people, crowded, hot lines, standing and walking for 8 hours, but he never so much as whimpered or complained! 'lou's day at disney at 11 months old. 

attending the global nurse-in at facebook offices at our local one in michigan. i nursed 4 year old 'lou while jovie nursed her own baby shortly after just weaning her herself at 5 1/2.

4 yo compliments to the chef. :-)

nursing #1 while 8 months pregnant with #2. bo was born a few days after this picture was taken. 
jake was 17 months old here.

jovie's 1st time ever nursing at about 15 minutes old after her home water birth. 

one of jovie's last times nursing, at 5 1/2 years, alongside her baby brother at almost 3 1/2 years 
(as he rubs her hair affectionately)

another devout lactivisto, giving up his own breast to make sure the  justborn baby learns how to latch and nurse well first. jonah, 15 months and jovie, 30 minutes old. 

what triandem nursing looks like. i needed a ticket dispenser to hand out tickets for the oldest to wait in line!  newborn, 15 month old and 4 year old, waiting his turn as he pets, snuggles and smells the new baby. 

Our Peanut Free School Journey

In December of 2010, we began the process of asking our elementary school to go peanut free for our anaphylactic-allergic daughter in anticipation of her starting there the following year.

 This is the open letter I wrote to our community in anticipation of the controversy that might ensue:
Green and Bitchy: open letter about our school going peanut free

The process took 9 months in total, but the school was officially peanut free - or "peanut-restricted", as they prefer to be called - by her first day of Kindergarten in September, 2011.

I've waited until we made it through the entire school year safely before blogging our story. There are so many different schools of thought on how safe you can really make a school for children like my daughter. I know perfectly well there's really no such thing as any guaranteed "peanut free" environment where other people can come and go. But I also know that I can't seal her up in a plastic bubble and she deserves the ability to start finding her way in the world in an environment that at least gives her a fighting chance. 
I don't plan to ask that her middle school, her high school, her college or her job someday all go peanut free for her. But right now, when she's little and forgets to keep her fingers out of her mouth, or her nose, or her eyes, right now - it's vital that she have a place where peanut butter isn't, in case she forgets these simple frontline precautions to keeping herself safe. 

Even more reason my family in particular is overjoyed and relieved to have a peanut free school is the fact that we now have THREE children with peanut AND tree nut allergies -and all three are in elementary school together for the next 3 years. 

I'm writing this blog about our experience because I'm  asked for advice on the process via both the internet and in real life almost daily. Just today at our allergist's office, the Dr. came in and asked if he could give my contact info to another mother about to embark on the same process with her school in a neighboring county. It seems more and more that there is a demand and need for peanut-free schools for our children and I am only too happy to help in any way I can - increasingly so with every death notice I see about another child killed by peanut or tree nut allergies. 

Our journey started with our daughter having her 4th anaphylactic reaction at 5 years old and her allergist saying that she would only be able to attend a peanut free school. I had no idea how to make that happen, so I asked some friends who were teachers and was told I would need to make a 504 plan with the school. This is the federal law that says a school has to accommodate childrens' disabilities.  I found the 504 coordinator for our district and began emailing her about Jovie's condition and asking for a meeting. I'm really glad I started the process very early, because I had no idea it would take so long. 

Our school was initially already a peanut and tree nut free classroom facility. The principal we were dealing with at the time felt that this was good enough and balked at being asked to remove and ban peanuts entirely from the building and grounds. It turns out, however, that children were actually permitted to eat peanut products in the classrooms on field trip days or when the cafeteria was already in use for assemblies or events and they ate in the classrooms. Severely peanut allergic children could go eat in the principal's office at these times. I knew this plan would never work for my daughter due to the potential for peanut residue...and besides, if they bent the 'peanut/tree nut free classroom' rule regularly for these reasons, there's really no consistency or accountability. You can't say the classrooms are peanut and tree nut free if people can eat peanuts and tree nuts in them!

The school district was not satisfied with my daughter's allergist's letter describing her history and the severity of her reactions. I also provided one from her pediatrician, saying the same thing. The 504 coordinator took several weeks to call them both and have lengthy conversations about any other way they could segregate or accommodate my daughter. When the Dr.s held firm that she needs a peanut-free environment, they asked me to come in for a meeting where I once again had to explain her history and symptoms and was subjected to the principal's ignorance and irresponsible view on the subject. She told me, "If my children couldn't have had peanut butter, I think they would have starved to death - I think the way we have the school allergy plan right now is just fine." She asked me disbelievingly, "If she can't go to a school unless it's peanut free, how do you take her anywhere? Do you ask the supermarket to go peanut free for her, too?"

It was a wait of many more weeks while the school and the district reviewed all of our information. At one point early in the summer, they did tell me they would go peanut free, but then they retracted the commitment and said the decision needed further review. 

Finally they got back to me and asked if I would be willing to provide a 3rd medical opinion by a Dr. of their choosing? I agreed, with the stipulation that they pay for the consultation. They made us an appointment with the head of Allergy and Immunology at Children's Hospital of Detroit. Who not only upheld our original Dr.s recommendation, but added that the classmates of my daughter have to wash their hands upon arriving at school every morning. 

The District once again took many weeks to review this new recommendation and in the meantime, I began doing my own research into the issue and found some excellent sites for support and information on the subject:

As I waited to hear the school's decision, I contacted the Michigan Protection and Advocacy Service, Inc. and learned that we would be provided free legal representation should the school reject the three medical recommendations for our child's disability. I also learned that according to Michigan discrimination laws, offering to segregate a child with food allergies as a form of accommodation against the parents' preferences is actually a prosecutable form of discrimination against a person with a disability, but if the parents request this form of accommodation themselves, it is perfectly legal.
(We do have such a table at our school - it currently serves as a safe zone for tree nut allergic kids, in case other students bring in almond butter or other tree nuts, which are still allowed in our lunch room and grounds - just not the classrooms).

By the week before school was due to start, the district contacted us to let us know that they would be going peanut restricted for the entire building, field trips and outings and school grounds. We came in and drafted a 504 plan which all parties involved agreed to. Jovie's teacher, principal, a school nurse from the high school and the 504 coordinator were present, with the Superintendent having previously signed off on it. 

 A letter was sent out to parents days before school began, informing them of the new rule. The school issued a statement when the story was aired in the local media saying that they felt going peanut free was the safest policy for everyone at our school and that we have several students with peanut allergies. The principal hosted a question and answer session for over a week on our school's PTA page on FaceBook to answer questions and concerns that parents had about the new rule. Our PTA set up an allergy awareness table at our first PTA meeting of the new year, and offered samples of peanut butter alternatives like sun butter for parents to try. Our food allergy committee volunteers donated their time to put up the new peanut free signs around the building.
A letter went home with the "fun" suggestion that parents offer their children their favorite peanut-containing snacks in the morning (making me profoundly grateful for the added requirement of hand-washing before class by my daughter's classmates) before school and send them to school with their cereal to eat at lunchtime instead.

We also got a new principal during this time and I have to say he was a breath of fresh air.

His empathy and acceptance of what needed to be done to keep not only my daughter but almost a dozen other peanut and tree nut allergy students safe was reaffirming after the attitude of our previous principal. I watched the first week of school as he patrolled the halls and lunchroom, reminding and asking students about their snacks and lunches. He would bring them into the office if they had peanut products, ask them to throw them in a specially designated trash receptacle with a lid and then call their parents to bring replacement items or provide one from the school and send a note home. 

Per our 504 plan, the staff were trained in the use of Epi-Pens. 
 A plan was devised whereby substitute teachers report to the secretary for Epi-Pen training before they teach class.

We wrote an emergency anaphylaxis plan describing Jovie's typical pattern of impending anaphylaxis and how it should be treated and a copy was distributed to every teacher in the building and kept on file in the office. I made kits containing her Benadryl and Epi-Pens for the office, her classroom and her backpack. 

As stipulated per Dr.s orders in her 504 plan, she has also self-carried her epi-pen for her entire year of kindergarten.

Since just before she was four, she's never left home without wearing one of her special purses or fanny packs for her epipen and benadryl.

During the class celebrations and parties, the principal was everywhere, patrolling and checking the treats.

For Halloween, we came up with the idea of putting a big plastic bin with a lid just off campus, at the fire station behind our school. There we asked parents to deposit any peanut-containing candy they wished to donate. 

There were a couple of missteps in our carefully laid plans, but I don't think it was realistic to expect none during our first year of transition. A teacher made the oversight of bringing in an assortment of cookies for Teacher Appreciation week in May and it contained several peanut butter cookies. The oversight was caught quickly and the cookies disposed of, never having left the staff lounge. At the end of the year picnic in a local park, a parent brought baklava encrusted with tree nuts.

It was not removed or disposed of, reinforcing for me that my children simply won't be attending any extracurricular activities with food-centered celebrations, a backup plan I had already known I would feel it necessary to implement. 

Now school starts again for 2012 next week. Letters have already come home with reminders about the peanut free school and grounds as well as the peanut AND tree nut free classrooms and outings and field trips. The kindergarten meet and greet was this past week and I have another kindergartner starting this year, also with peanut and tree nut allergy - though he has not had an anaphylactic reaction (never having been exposed to peanuts or tree nuts). I brought all of my children to the meet and greet and saw no less than 2 peanut products in the group - a chocolate covered bar of peanuts and a peanut butter and jelly sandwich. 

I'm not sure how these oversights occurred when letters went out to all families at our school, but the principal rectified both situations immediately. Letters will again be going out the first week of school and we will put up a reminder on the school's marquee, out in front near the main street. 

I think we also need signs by all of the gates onto our playground -a goal I hope to explore this year. 

It's not a perfect solution, I know they aren't 100% safe from ever being exposed to a peanut there, but I think it's a great compromise. The school is doing its job the best it can, and if I'm doing mine and reminding my kids constantly that they never eat anything that didn't come from home, that they wash hands frequently, that they report any symptoms to an adult promptly - then we might just come out of this with everyone a little safer, more tolerant and understanding about food allergies in today's world.

 And more importantly, we didn't lock them up and "keep them home" to homeschool them. Which is the version of homeschooling most people who recommend it to us peanut allergy parents seem to envision - when in actuality, my homeschooling friends and clients still have to deal with this issue in their many outings to public venues with homeschool groups, co-ops and sports activities! No parent of a child with life-threatening food allergy wants to emotionally cripple their child by denying them the chance to learn how to navigate out in the real world with their condition. Physically disabled children get wheelchairs and ramps, our kids need peanut bans until they are independent and secure enough to manage environments without them. 

 All we ever wanted was a chance for them to get the same thing other kids get: to go and learn and socialize and achieve without having to die or be seriously harmed while they do. 

Aside from my gratitude and relief that our district has provided us with that chance, I am thrilled and proud that our school is peanut free.

 There couldn't be a better location for a food allergy child to attend school, if you ask me. Right next door, on the corner of the street our school is on, is one of the top allergists in the state. In fact, he is the Director of  Pediatric Allergy and Immunology at Beaumont Hospital as well as the Director of Pediatric Pulmonology.

 Sitting right smack behind our rear parking lot is one of Royal Oak's fire stations.

 It is a straight line from their back door to the kindergarten room door that would take less than 2 minutes to trot on foot.

 About half a mile down 13 mile road (that our school is on) is Beaumont Hospital. Literally about 4 minutes for an ambulance to cover. 

Across the street from the hospital is another one of the top allergy centers in the area.

 I simply couldn't think of a more perfect location for an allergy aware and peanut restricted school, frankly - and I'm very proud of ours for getting current and putting student safety first. 

(Updated 9/6/12 - The peanut free reminder was up before the 1st week of school was out and the principal informs me that we are on track to get signs on our gates soon.  :-)

Updated 10/4/12: We have now placed a peanut-specific trash can in the lunch room for when peanut products are occasionally overlooked and brought from home. We also came up with a note to send home in the child's lunchbox once the item is disposed of in the trash can, alerting parents to our peanut-restricted status and the breach of policy. This is a good step toward keeping peanut items out of  our school's main office, where they were previously brought.