Bravely Seeking Safety

I love this post from Momastery, “This is What Brave Means”, so much and, of course, it feels so familiar.  Take a minute to read it if you haven’t seen it yet.  It’s time to redefine “bravery” for your children and for ourselves and to realize that physical danger is not the defining characteristic of a brave action.

For people with food allergies, who get pressured all the time to take risks, bravery is not eating something you’re unsure of or taking risks with your precautions.  Bravery is standing up for yourself, asking for precautions, and risking being different because you aren’t eating the food at a party or other social event.

Children are often expected to take management of their allergies into their own hands, which sometimes means defying adults who don’t fully understand their allergens. THAT is brave.  Bravery is the second grader I heard about recently who gave herself an Epipen after her teachers told her she had to wait for the ambulance to arrive, because she knew she needed it.  Can you even imagine?  A child was told by grown ups that she could not have the medicine she knew could save her life until an ambulance arrived, which could easily be too late.  A second grader, grabbed her own Epipen and injected herself in the leg, defying the adults around her , and possibly saving her own life.

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My own 5 year old daughter also exemplifies bravery to me, although to others, she might seem fearful and overly cautious.  Bravery is when she decided on her own to skip Sunday school because she found out they were passing out donuts and goldfish.  Bravery is when she walked calmly to sit in a chair so I could inject her with an Epipen because she realized she had eaten something she shouldn’t have.  Bravery is standing up for herself and suggesting to her brand new kindergarten teacher that she should wear gloves and collect chicken eggs with her class, despite her allergy.  Bravery is marching into almost every party she has ever attended with her own cupcake or meal and her bag of epinephrine auto injectors, because she knows that when it’s time to eat she will be surrounded by allergens and will need to act differently from everyone else to keep herself safe.  Bravery is when we eat out and she takes it upon herself to tell her server all about her allergies and what all she is allergic to.  Bravery is when she has to go to the Dr’s office for a food challenge and spend 4 hours taking bites of food she knows could make her sick, could require her to need Epinephrine, and that she has spent her entire life trying to avoid at all costs.

My child may be cautious, but she and all of the others like her are the most BRAVE little beings I know.

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Elena and her friend, Blake, share allergies to the same four foods.

Do You Think Your Child Is Safe At School?

You might have heard the buzz about new legislation for stocking epinephrine in schools.  As the mother of two allergic children and one non-allergic child, I am very passionate about this legislation.  You might think it’s because I want to take every precaution to keep my allergic children safe at school.  Nope….not about them at all (for me, anyway).  I want it for my non-allergic child, and you should too.

According to the recent Yahoo News article, States Enact Laws To Stock Epinephrine at Schools, by Lucas L. Johnson II , one quarter of all anaphylactic reactions that occur at school happen to a child with no known allergies.  Just let that sink in for a minute.  Twenty five percent of life threatening reactions in school happen to a child like your non-allergic son or daughter.  I don’t like those odds one bit, considering my non-allergic daughter does not have an epinephrine prescription.  In fact, she is the only one of my children who I know will not have epinephrine accessible to her unless she is with her siblings.  It is for her that I want this life saving medication stocked in her school.

Olivia has been tested for the top 8 food allergens and her results indicated that she is not allergic to any of them.  She has no known food or other allergies up to this point.  I know though, that she could develop an allergy at any time.  I also know that things she has never been tested for could cause a life threatening reaction, such as ant bites, wasp stings, etc.  If Olivia suffers a reaction at school, she will not have access to epinephrine because we live in North Carolina.  North Carolina is neither one of the four states that requires stocking of epinephrine, nor is it one of the 23 others that ALLOWS stocking of epinephrine.

Basically, the children with known food allergies who bring their own prescribed epinephrine to school are the only ones who will receive life saving medication in our state.  Even if another child has epinephrine on site, it will not be used on your child during an unexpected reaction.  Your child would not be treated in order to prevent their death.  They would have to wait for emergency assistance to bring the medication, which could easily arrive too late.  If you don’t care about the stock epinephrine bills because your child doesn’t have a known allergy, you might want to rethink your position.

My daughter who has severe food allergies never leaves home without at least 2 epipens.  She will always have them if she needs them.  This legislation is not for her.  This legislation is for my non-allergic child, and it’s for your non-allergic child.  Do you really want to bank on the chance that help will arrive in time?

Check the map above or this list to see if your state is one of 27 that allows or requires stocking of epinephrine in schools.  If not, the next time you see an opportunity to support legislation for stocking epi, don’t ignore it.  It just might save the life of a child you love, including your own.

I would love to see your thoughts on the issue in the comments below.  Does anyone think epinephrine should NOT be stocked in schools?

NO this, NO that…What CAN you send to school for lunch?

I know that many parents struggle to find school lunch ideas, even without restrictions.  For some, finding themselves in a nut-free school or allergen free classroom is a huge inconvenience.  Although my daughter’s school is not nut or allergen free, I know that many of the other parents make an effort to send in lunches that are safe for her so she can sit with friends without worrying about their food or hands touching her.  For the record, I am not suggesting that everyone should pack allergy free lunches.  I just like to share some of the things we pack in hopes that others might see something they like and can use.  I have been asked many times what I send for lunch and I feel like the options are extensive, despite being dairy, egg, peanut, and tree nut free.  Below is my post from last year with all of the lunchtime details.  I promised to add more to it, so here they are.  I have photographed lunches these first two weeks of preschool so you can see what I send.  Notice that there are two in several of the pictures.  My non-allergic daughter goes to school a few days each week and she eats the same lunch as my allergic daughter.  It’s not “special” food.  It’s just FOOD.

School Lunch:  Keeping it Simple (The original lunch post)

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Turkey rolls, tomatoes, steamed green beans, berries, and popcorn.

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Quinoa salad, turkey rolls, tomatoes, carrots, cucumbers, strawberries, fruit smashie pouch, and juice.

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Turkey rolls, steamed green beans, carrots, tomatoes, mixed berries, hummus, crackers, fruit smashie pouch, and juice.

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Nectarine, raisins, and hummus with veggie dippers: green peppers, carrots, sugar snap peas, cucumbers, tomatoes.

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Rice cake, turkey rolls, tomatoes, green peppers, and apple slices.

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Turkey rolls, green beans, tomatoes, apples, crackers, and hummus.

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Apples, green beans, red grapes, green olives, somersaults sunflower seed snacks, tomatoes, and turkey.

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Tomatoes, red grapes, frozen peas*, frosted mini wheats, raspberries, sweet potato sticks, Triscuits, and hummus.

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Hummus, crackers, sugar snap peas, tomatoes, kalamata olives, cucumbers, blueberries, and carrots.

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Fruit smashie pouch, honeydew, strawberries, mini banana muffins*, kidney beans, carrots, green beans.

A few notes:

*1) I pack the frozen peas straight from the freezer.  I don’t thaw at all.  If I pack the night before, they thaw by lunch time.  If I pack the morning of, my girls eat them frozen.  They actually love them frozen as much as thawed, if not more.

*2) I made a double batch of mini vegan banana muffins before school started and popped them in the freezer (wrapped in sets of 4).  I take out a pack of 4 the night before I want to pack them and put them in the fridge.  They are thawed by morning.

3)  You will notice I pack a lot of hummus.  I have learned to include a spoon because no matter how many dippers I give, the fingers will end up in the hummus by the end if there is no spoon.

If your kids really love their nut butter sandwiches, fear not.  There is an option even if your school is nut free.  We are big fans of WOW Butter.  It is school safe and has the texture of real peanut butter.  The flavor is great too.  There are a lot of alternatives on the market, but after trying many of them, this is our favorite.

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If you peel back the label, there are even little sticker labels to put on the sandwich wrapper so you can be sure it won’t be mistaken for peanut butter.

*All views expressed in this blog are my own…until I change my mind, at least 😉

Empty Tear Ducts, Full Promises

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Today is Elena’s last first day of preschool and Olivia’s first first day of preschool.  It’s a big day.  This is different from the past two years when Elena went off to school for a few reasons.

This is the first time I have sent a non-allergic child to preschool.  It’s incredibly different.  When she got out of the car, I didn’t feel panic that it might be the last time I see her.  I didn’t worry about what the other children in her class might bring in or might have eaten for breakfast.  I know that, even if things don’t go perfectly for her today, Olivia will be safe.  That’s not to say it’s easy to let her go or that I don’t have any concerns for her.  I really hope she has fun, and makes friends, and makes it to the potty every single time.  If not, though, I know she will have another chance.

With all of the recent news of children losing their lives to food allergies lately, this year was the toughest for me.  Last night I was restless.  I have always promised Elena I would keep her safe, but this year that’s not enough.  I have a few more promises I need to make.  Elena, I promise not to let you see my fear as I drive you to school this morning.  I promise to get all of my tears out when you’re not around, so you don’t have to wonder what might be causing them.  I promise I will be strong and brave and I will not let my fears prevent you from living.

When every bite of food your child takes could take her life, it is terrifying to know she will be eating when you’re not around.  Even though I have checked and packaged all of her food myself, I won’t be able to breathe easy until I see her face at pick up.  I will smile and try not to hug her too tightly.  I will act like it was a normal day.  I will pretend like I enjoyed my break while the girls were at school.  Mostly, I will say a prayer of thanks that she is back under my watch.

I have many prayers of thanks for this day.  I thank God that Elena doesn’t seem crippled with the fears that are eating me alive.  I thank God for the brave parents,  like Natalie Giorgi’s mom and dad, who use their own loss to bring light to the subject and make all of our children safer.  I thank God for the wonderful and loving teachers and director at Elena’s school who “get it”.  I thank God that He gave me such a wonderful partner to navigate these challenges with.  My husband is strong when I’m weak and he is able to help me avoid making emotional decisions against my better judgement.  Finally, I thank God for the strength to let her go and live that life He gave her.

Since I was up all night getting my tears and fears out anyway, I put together this video.  Get a tissue.  You have been warned…

Here are a few helpful resources if you’re sending your child to school this year with Anaphylactic Food Allergies…

Get Schooled In Anaphylaxis

FARE Food Allergy Action Plan

Top 8 Food Allergies (and how to eat around them)

Lunch Ideas (egg, dairy, peanut, tree nut free)

We rocked out the night before school started to Kyle Dine‘s CD’s.  They’re really fantastic for getting the kids thinking and asking questions.  I also like sharing these songs with our non-allergic friends.

Please post in the comments if you have resources that helped you with the task of sending your allergic children off to school.  Most of the best resources I have found in this journey have come from other mothers.

How to Crush a Food Allergy Mom: A Tutorial

This is an easy to follow tutorial for how to crush a food allergy mom.  I’m offering the top 5 most crushing blows I have heard from other parents regarding my food allergic daughter or as commentaries on food allergies, knowing I have a food allergic daughter.  I know these work because I myself have been crushed by them.  Truthfully, you don’t need to follow each step.  Just pick your favorite and it will probably get the job done.  Of course, the more you use, the deeper the crushing.  Some of these have been said directly to me or in front of me.  Others were passed along second hand.  Either method seems effective.  Let’s get started.

Top 5 phrases for crushing a food allergy mom:

5)  “My child’s food preferences are as important as your child’s.”

Why it works:  This not only shows that you consider avoiding allergens to be a choice rather than a necessity, it also shows that overprotective food allergy mom that the effects of eating something other than cheese or peanut butter for a snack or meal are every bit as damaging as the effects of exposing her child to potentially “life threatening” allergens.  Just because the snack could kill her child, doesn’t mean yours shouldn’t eat it.  It’s not like kids ever transfer food particles around the classroom or playground.  If your kid NEEDS these snacks, other kids just need to deal with it.  Its not YOUR responsibility to keep her child safe at school.  She just wants everyone else to do her job for her.  (Last line was borrowed from a particularly fed up mother who was tired of the food allergy moms relying on others.)

4)  “If it’s that severe, you should just homeschool.”

Why it works:  This is the best way to show that food allergy mom that her child has no right to public education if they can’t tolerate being around your child’s favorite foods.  Why should THAT child even be here if everyone else has to change the way they pack lunches?  If his food allergy is that severe, he should just dig a hole and never climb out of it.  That will keep him safe for sure and nobody else will have to worry about it.  You know that if it were your child, you would just abandon all hopes and dreams for their future and change the plan.  After all, it’s not like they will EVER be able to function normally anyway, so why even bother trying to exercise options that should be reserved for “normal” parents?

3)  “Food allergies are not real.  They are made up by attention seeking parents.”

Why it works:  This works for two reasons.  It shows that the parent is to blame for the condition, while also pointing out the inauthenticity of food allergies.  You need to show these mothers that they can’t pull the wool over your eyes.  As if contact with a smear of ranch dressing could really KILL a child with an egg allergy.  What kind of a dimwit does she take you for?  Certainly it would just be a mild rash or a tummy ache.  Those who DO suffer breathing difficulties, anaphylaxis, and even heart attacks following ingestion probably only do so because their parents have caused such anxiety about everything the child eats.  Those parents should be ashamed of themselves.  After all, if you don’t fully understand a disease, it probably doesn’t exist.

2)  “Ick.  I don’t know how you can eat that stuff.”

Why it works:  This is a great one.  You don’t have to actually express disbelief in the food allergy to get this jab in.  After working for her child’s entire life to find/create safe alternatives to the foods your kids enjoy without a second thought, you can use the food allergy mom’s own efforts to crush both her and the child.  Chances are, she has convinced her child that their alternative is every bit as tasty as what your kids are eating.  She might even believe it’s true.  Pffffffffft.  Can you imagine?  Be sure you say it in front of the child, so the mother HAS to address it with them and to be sure they won’t feel so satisfied with their alternative in the future.  Maybe if we take away the acceptance of alternatives, she’ll drop the ridiculous charade.

1)  “Maybe it’s just nature’s way of weeding out the weak.”

Why it works:  This one hits hard in a totally different way.  With this one, you can admit that perhaps exposure to the allergen would actually kill her child.  The fact is, who cares?  Is she is so full of herself that she thinks the loss of such a small percentage of the population would impact us?  These children are obviously defective anyway.  Maybe if her child dies from an exposure to their allergen it wouldn’t be the worst thing in the world.  I heard it put best, “maybe if we just all turn our heads for about 5 years, the whole food allergy problem will just fix itself.”

There you have it.  Just put on your pleasant parent face and deliver any or all of these lines in a sweet voice.  Chances are, nobody will stand up for her, and you will have successfully crushed a food allergy mom.  Honestly, there will be nothing she can say or do, so you needn’t worry about it coming back to you.  She’s going to have to maintain her focus on food and she really can’t afford to make any enemies.  She really can’t even react because she’s not going to want to bring any more attention to it in front of her child, who is already likely teetering on the edge of being a social outcast.  After all, food is central to all social events.  The most she can do is go home a cry about it after the kids are in bed.  Pathetic!

If you’re not interested in actually crushing her, but just want a few little digs to let her know you truly don’t understand or agree with her ways.  These are good to keep in your back pocket and slip into conversations with food allergy mom as needed…

-That’s a little over the top. (to be used for any precaution she takes)

-It’s too dangerous for the non-allergic children to have an Epipen in the classroom.

-I feel so sorry for your other kids because they have to live with this.

-Since there is likely a genetic component, I guess it was a tough decision to have more kids.

Happy Crushing!

Just remember this.  If you ever change your mind and heart, there are ways to help rebuild some of the rubble others have left behind.  Here are a few things people have said to me that make my heart feel fuller just thinking about them.

5)  “I would be doing the same thing if it were my child.”

4)  “These precautions are really not hard.  Anyway, it’s worth it to keep every child safe and included.”

3)  “I would like to pack a completely safe lunch/snack so our kids can play together without you having to worry.  What are some good food ideas?”

2)  “I just wanted to give you plenty of notice that I plan to bring in a treat for my child’s birthday.”  (followed by details of what they will be bringing so I can provide a comparable safe treat.)

and the biggest, best, most delightful way to build up ANY parent…

1)  “I LOVE your child.”  (End it right there.  This should not be followed by “but…”)

Preschoolers: They put the AW in FAAW

I had the honor of speaking to the delightful children at Elena’s preschool yesterday for food allergy awareness week.  The kids were excited and energetic and they participated in every aspect of the presentation.  What a blessing to be able to interact with this age group.  By this I mean, thank goodness they were not middle schoolers.

These kids were so smart and fun.  One of them even got my goat when I asked who knew what hives are.  He answered confidently, “They are where bees live.”  Talk about smart.  I had to concede that he was indeed correct, but there is at least one more meaning to the word.  I also loved it when one kiddo told me he was allergic to all yucky food.  Well played, little one.

We began by talking about what allergies are and what kinds of things people can be allergic to.  The kids came up with quite a list, including cats, dogs, pollen, bees, grass, poison ivy, smoke, and of course, germs.  We talked about what can happen if someone eats a food they are allergic to, which of course spurred a discussion about not eating dogs and cats if you are allergic.  Seriously, if you haven’t ever held audience with a group of preschoolers, you are missing out on something special.

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Two of our favorite food allergy books…and my toes. Oops.

We read ‘Cody The Allergic Cow’, which opened up to conversation about medical alert bracelets and Epipens, both of which Cody has.  The book is absolutely perfect for this age group and there are others in the series, which I will be getting my hands on soon.

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We use the Ergo pouch for carrying Epipens and Benedryl. This is Elena’s customizable AllerMates Bracelet.

One thing I found interesting was the kids response to the idea of talking about allergies with their allergic friends.  When I held up the bracelet, they were very interested.  I asked what they could do if they saw a bracelet like this on a friend.  Should they maybe ask their friend about it?  Both groups I spoke to said, “NOOOOOOO”.  I’m not sure if they thought it would be rude or unkind, but the initial response was that they should not talk about it.  I let them know it was OK to talk about it and that they should always ask questions if they are wondering about a food allergy.  I asked the children who had announced they have allergies if they would mind their friends asking questions and, of course, they said they would not mind.  What better way to learn how to help out your friends than to ask them what is safe and unsafe for them?  I hope that giving them  “permission” to talk about it will open up the doors for better understanding.  Although, I must say, these kids were pretty well informed already.

Next we played a little game of, find the hidden allergen.  The allergens I chose were not so well hidden, but keep in mind the age group.  I held up groups of three foods and the kids identified each food.  The sweet potato and rice cakes gave them the most trouble.  Then I asked them, which of these foods is hiding milk/nuts/wheat/etc.  They did really well with this and it was fun to see them so engaged.

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Find the hidden milk.

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Find the hidden wheat.

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Find the hidden tree nuts. (yeah, ok. Not so hidden. I told you it was easy.)

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Find the hidden peanuts. (I called this peanut butter and covered up the label because I knew they would be familiar. With an older group, I would have just used it to find the hidden soy.)

Since all of the allergies in the school are within the top 8, I was able to do a little taste test.  We talked about safe alternatives to common foods.  Just because your friend can’t eat your “bread”, does not mean they can’t eat any “bread”.  I showed them a bag of Enjoy Life chocolate chips and told them they are made with food allergies in mind to be safe for people with certain allergies.  Then they each tasted a few and I asked them if they tasted the same as the ones they are used to eating or different.  Most said the same and a few said different, but they all wanted more.

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Half a bag for the kids to share and half a bag for the presenter. Sounds fair to me.

I left them with a mission for the day.  Each of their teachers got a stack of helping hands.  I challenged each student to earn a helping hand by doing something to help keep their classroom safe for friends with food allergies.  Together, we came up with this list of things they could do…

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-Wash hands after eating.

-Keep food in food areas.

-Clean up food areas after eating.

-Never share food.

-Do not touch other people’s food.

and my favorite…

-Don’t feed your friend something they’re allergic to.

Kudos kiddos!

I hope they all earned their helping hands.  I enjoyed the talks so much and the enthusiasm of these wonderful students is infectious.  A great big thank you to CIC Preschool for letting me share this important information with them and for keeping our children safe every single day.

School Lunch: Keeping it simple.

School lunches are a challenge for many parents.  Especially those who find themselves attending a school that enforces mandatory exclusions to protect other children from allergens.  If you are not used to avoiding certain foods, it’s even more difficult to pack a lunch without them.

One of the most common questions I get when I tell people what all Elena is allergic to is, “What do you feed her?”  In fact, that’s the question I had in my own head when I first got her diagnosis.  We started with the basics and had a lot of fun with it.  We do a lot of “cutting board” dinners in the summer.  I just go to the cutting board and prep all kinds of produce and sometimes bread.  It’s simple, quick, healthy, and I don’t have to heat up the oven or stove at all.  We do this a lot using muffin tins, ice cube trays, or other sectioned containers.  The girls love it.

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One of our muffin tin lunches last summer. I can’t believe how little the girls looked.

The lunches I pack for school are very similar to this.  I love doing it this way because I can just throw in whatever we have in the fridge.  She likes the variety and she rarely has the exact same lunch twice.  I always give her a juice box and usually a fruit puree pouch, which we call “smoothies”, or “moosies” if you’re Olivia.  Here are some of Elena’s actual lunches she has taken to school.   You won’t believe how simple it really is to pack an allergy friendly meal.

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This is a Hummus dipper lunch. Get a single serving pouch of safe hummus, or spoon some into a small container. Then all you have to do is give some crackers, veggies, or other dippers. Of course, our usual “smoothie” and juice box are here as well.

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Bento style lunch. Fruits, veggies, craisins, and pasta in this one. Anything goes.

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Pasta salad with veggies and mixed fruit. Yes, the pasta is heart shaped. I usually just use bowties or penne.

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Here we have edamame, berries, crackers, tomatoes, and turkey jerky bites. Ok, so it’s not ALL healthy. The tomatoes are in a silicone cupcake baking cup. I use them as dividers a lot.

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Obviously, this one was from Valentine’s Day. Cucumbers, red peppers, and a sandwich. I don’t remember what kind of sandwich this was, but probably either turkey or sunbutter and jelly.

I also always try to throw in a special napkin.  I get character napkins from the party section at Target or use the extra party napkins from various celebrations.  She really likes having a colorful napkin, since we don’t typically use those at home.  Elena also has a very special way of reminding me to send a fork.  I owe a big apology to her teachers for those days I forget.  I know it doesn’t slow her down one bit…

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