This Just In: Food Allergy Accomodations on University Campuses

There is some good news on the legal front of food allergies: accommodations are moving onto university campuses! 

So far we've only thought about how to handle kindergarten: Home school.  But COLLEGE?  I don't have the emotional budget to brainstorm college yet, but I will entertain the idea that IF our guys still have these allergies when they reach college, they will need accommodations of some kind.  The inclusion of people with food allergies in the Americans with Disabilities Act as well as the lawsuit mentioned in the link below pave the way for those accommodations to be available.

 The below article posted by NPR also has a link to understanding the changes made to the Americans with Disabilities Act that helped pave the way for the mentioned lawsuit and for people with food allergies to get the accommodations they need:

Okay, my brain hurts. Kindergarten. That's all I want to think about. Enjoy the link!
  College Students with Food Allergies Make Legal Gains

G

Click Clack Shoes

I remember her perfume
Mingled with make-up, hair spray
Comforting was the mingled scent

So many things to adorn herself
Leaning into the mirror
to blend her make-up

Sunday mornings all dressed up
Click Clack went her shoes

I sat on her satin slipped lap
ribbons and bows
she curled my young locks

Now I lean into the mirror
blend my make-up

I have no young curls to curl
nor ribbons to tie,
rather I have belts to tighten
and cowlicks to flatten.

And I wear the Click Clack shoes.

The sound of Sunday morning

~By Gillian Brickey, August 2011~

Chicken is Today's Manna

Tonight’s lesson at our church’s children’s program was about the complaints of the Israelites as they wandered in the desert (Exodus 16).  Hearing their hunger complaints, God provided quail and a food called “manna” for them.  It was more than sufficient for the day, so God said not to hold any over for the next day because He would provide for them again.  Some did not believe the Lord, however, so they hid an extra portion for the next day.  Overnight their leftovers rotted and became infested with worms.  Despite their complaints and lack of faith in God’s provision, God continued to provide for their needs.  He even made the manna last TWO days to accommodate the Sabbath.  The tidy little lesson for the kids: God is faithful, so we shouldn’t complain. Little did I know that God was going to use our sweet Z to drive home that point.

We loaded our family into the car after dinner at church.  As usual, we brought the twins' picnic while the rest of us ate what was served to the congregation.  As I pulled away from the curb, completely randomly, three year-old Z declared: "I'm GREAT.  'know why I great?  I great because I ate chickeeeen, and leeeeeeaves, and applesaauuuuce, and rice milk." 

Let me break this down for you.  They had broiled boneless skinless chicken breasts.  Plain romaine lettuce leaves without dressing.  Natural applesauce.  And plain rice milk (not vanilla flavored). 

Thank you, Lord, for his thankful heart.

Even as I packed their dinner tonight I had a complaining spirit.  I wondered when I would be able to give them something more exciting than this plain, bland menu.  But the truth is they eat healthier than the rest of us in our house.  They’ve never had a preservative other than salt.  They only eat foods from the produce and meat departments.  Truly their menu is the Lord’s manna – it is sufficient for them.

A woman in a Bible study I attended last spring heard some of our food allergy woes, and she said, “Is not life more than food?”  And she pointed me to the Sermon on the Mount.  I’ve read it so many times before, but never with a food allergy lens.  Matthew 6:25 ESV says:

“Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing?”    www.biblegateway.com

I posted this scripture above my kitchen sink to remind me to ditch the anxiety and trust the Lord, yet I still hit our latest snag and I fell back to my grumbling spirit.  We call it a “dark cloud” moment when we come across yet another discouraging thing in the world of food allergies.  Our latest dark cloud was discovering that Z is allergic to cinnamon, and then learning that it shares a food family with avocados, to which I already knew he was allergic.  Had I known about food families ahead of time I may have had an opportunity to spare him the cinnamon reaction, or at least have had a more informed decision about trying it.  So now I have set about familiarizing myself with food families and “common cross-reactivity” before we try anything else…grrrrrrrr.  I feel like I should have known these concepts YEARS ago, yet I have to stumble across “food families” on the internet while searching for “cinnamon allergy.”  It was just a small dark cloud compared to others in the past, but it was a dark cloud nonetheless.   

But there’s another great scripture for my dark cloud days that often pops into my mind:

Philippians 2:14-15 ESV says: Do all things without grumbling or questioning that you may be blameless and innocent, children of God without blemish in the midst of a crooked and twisted generation, among whom you shine as lights in the world holding fast to the word of life, so that in the day of Christ I may be proud that I did not run in vain or labor in vain.

Ouch.

I’ve said so many times that “I just need to vent,” and I do just that.  I vent.  But does it really help?  Often I get more stirred up, more frustrated with my helplessness and more irritated with allergists who can really only TEST and are pretty much worthless in the realm of actually living with allergies or discerning them in the real world. 

Sigh.  See?  There I go again.  It’s a loose trigger. 

But then there’s my sweet Z.  He has the most severe allergies that keep us hopping, yet he gets in my car after yet another meal of more of the same, and he’s "great."  He reminds me that for some, including my twins, tonight's dinner is a banquet. 

Z also reminded me that for today anaphylaxis was not our reality.  Tonight’s chicken was Z’s manna.  And he is thankful, as am I.

Lord,

Thank you that Z was so delighted with his meal that he inspired me to think of you and all that you have done for our family.  Most of all, thank you for today’s manna.  It is sufficient.  Lord, you are sufficient.

Love,

G

Life Hinged On a Book and a Prayer

Yes, it's another post about reading to our kids.  I have to keep learning the lesson that reading to them at bedtime is truly a treasure.  Even when I try to skip it, the kids bring us back to it, and it's so worth it. 

Yesterday was a long day in Mommyland. As everyone came home from work and school I found myself tired and a bit shaken. It was a day of experiences that challenged what I thought I knew from food allergies to grammar, to cooking garlic bread, and it all seemed to crumble (literally for the garlic bread, whoops!).  We worked to get the kids in bed on time, but their hilarious-when-not-at-bedtime antics slowed the process.  I just wanted the day to end and for peace and quiet to fill the house.  I was going to just skip the books and turn off the light so I could rush into the end of my night, but then our second son asked, "Mommy, are you going to read Fox in Socks to Z and S tonight?"

"Maybe, why?"

"I was wondering if you could read it really loud so I can hear it from my room."  

My heart melted.  I know it's not about the book.  "N, why don't you guys just come into Z and S's room and we'll read it together." 

So we read Fox in Socks together.  And then Brown Bear, Brown Bear.  I turned the pages, N read the words, Z and S dangled off their beds to see the pictures, A listened nearby with Legos, and The Hubs lingered in the doorway.  After the books we prayed with our boys.  The Holy Spirit nestled among us as we prayed together for our day, for friends whom God has healed, for healing from allergies, and for each other.

It's amazing what taking an extra few minutes with a book and a prayer can do to wind down a house of busy boys!  Sweet relief came to my weary and anxious spirit.  We finally tucked everyone into bed and turned out the lights.  Conversations between the two rooms continued for a few more minutes, but for the most part the house was quiet.  The Hubs and I finished buttoning up the house together, talking about our day and strategizing the days to come, and then we went our separate ways.  I sat down to study grammar for home school in the den (and you can tell by my posts that I have a LOT of studying to do!), and he went to the other end of the house to study for seminary.

Friends: My day was messy. My house was messy.  I was messy. (I even donned the faded Mickey Mouse t-shirt and flannel plaid pj bottoms BEFORE dinner!...yeah...it was THAT kind of day). 

But as I counted my blessings after my long day, taking a step back to look at the Big Picture, I realized yet again: God is so good in His simple love and care for us.

I distractedly studied for a couple of hours and then closed the books. Walking to bed I passed the twins' room and saw through the shadows a sweet little leg dangling out of S's bed. I went in and smothered his sweet little face with kisses, he moaned, rolled over, and tucked his leg safely back into his covers. I checked on all of my boys and then headed to bed.  Even in his sleepiness The Hubs still put his hand on mine.   Be Still My Heart! 

During this "I think I can," season of my life, when I feel like the Little Engine That Could with huge tasks set before me, I am thankful for oasis moments like last night when the world seems to stop for a moment.  Things get WILD around here, but for just a moment it was still.  And now I'm off to start another day feeling renewed thanks to a book and a prayer. 

Food Allergies: About Our Journey

Eggs, Milk, Peanuts, and Dogs are on the list of things that could possibly go very wrong for our twin boys.  Wheat, oats, and flax also cause problems for one of them.  In April of 2010 we had just left church on a Wednesday night.  Our little guy, Z, started a funny cough as we left, and by the time I drove the two blocks to our home he was struggling to breathe.  He made a hard long grunt to push through an exhale, and his chest caved in as he slowly and desperately pulled through an inhale.  Thinking it was asthma, I started a nebulizer, alerted my husband, and called 911.  I held my 18 month old baby as I watched consciousness slowly slipping away from him.  My husband remembered the epinephrine we had recently been prescribed at the pediatrician’s office.  He jabbed it into our tiny boy’s thigh.  He should have been able to scream or kick, but instead he lay limp in my arms.  Because of the blessing of my husband’s fast thinking and the epinephrine, Z quickly began to breathe better.  Then the hives had enough oxygen to come.  And they did.  That's when we knew for sure that it was an allergic reaction.  In the ambulance a blanket of hives covered his body.  His face swelled and he itched all over.  At the hospital his 18 month old body, barely 20 pounds, received an adult dose of Benadryl, epinephrine, and steroids.   He spent the night in the pediatric ICU as much to monitor the effects of drugs as the persistent reaction that wanted to keep coming.  Thankfully, the next day he came home happy and healthy again.  It was surreal to realize we almost lost him the night before.

Z and S January 2010. Two months before the big scary reaction we tried eggs and they both developed hives.  Z, above, developed a certain kind of hives that look like a sunburn. S, below, had standard bumpy hives and his right eye swelled shut.  These were taken at the beginning of the reaction, so it's not at it's full height yet.  We were off to the pediatrician pretty quickly. 

We have some theories but will never know for sure what Z ate that night at church. We do know what set the stage for it, though.  We were still very new at the whole food allergy journey. I was ignorant about how many prepared foods have hidden and unimaginable ingredients. More than five hours before church that night I gave Z and S a taste of fast food fries. I did not even consider the idea that there could be milk and wheat in fries. The doctors said that he must have eaten something at church for such a sudden and severe reaction, but that the fries probably helped get the ball rolling for the reaction to come.   Oh. The. Guilt.

Our church family was awesome, loving, and quick to respond. They held a meeting where they asked me to come and describe the warning signs of a reaction and demonstrate how to administer epinephrine.  I called it the“How Not to Kill Z and S Meeting."  We never blamed the church for what happened, especially after my own monumental mistake earlier that day.  They knew not to feed the twins, but none of us knew how many pitfalls there were in caring for toddlers with unknown allergies.  He could have grabbed another child's cup or bottle, or even found a stray crumb on the floor without anyone seeing him.  Who knows.  

I blame Allergies for what happens to my boys.
After the big church reaction I sat in an allergist’s office as he said, “They should outgrow most of these allergies by age 5,” and I replied jokingly, but with a lump in my throat:

“How do I keep them alive until then?” 

His sobering answer: “Work with a dietitian to make sure you have all of the major food groups covered as well as possible.  If you know of enough safe foods to keep them healthy, don’t introduce any new foods until we see you again next year.”  It was a punch to the gut.  We had fewer than 20 foods to work with, and just a few seasonings.  Thankfully, though, every food group was represented. 
 

S in 2010.  Mystery reaction.  This is after Benadryl, so his eyes were open again and looking better.

We have come a long way since then, and their fourth birthday is just a month away!  I’ve learned to cook their limited food list in a small variety of ways.  Homemade chicken stock, Rice Chex chicken nuggets, and my grandma’s pot roast are among some of our favorite recipes.  And they can enjoy several fruits and vegetables.  Rice and potatoes are our main and constant carbohydrates (no wheat or oats).  AND we’ve been able to try some new foods and expand their menu a little at a time. 

Once food was resolved, the social life needed addressing.  For a long time after that big reaction, I became a hermit with our guys.  Fighting an unseen enemy, we are no longer as free as we used to be.  Thankfully the Lord has blessed us with many wonderful people with problem-solving hearts. Because of them we have been able to find many safe environments for our guys. THANK YOU to all of our friends and family who take this seriously, watch and educate your own children, help me watch ours, and make crazy accommodations all so Z and S can live as normally as possible. YOU ARE AMAZING!  

(Our journey is not over.  This is Z Christmas 2011. We left gift opening early when he and S started to react to something. Thankfully this reaction and other recent reactions have all been mild and resolved with just Benadryl. That's a big sign to us that their allergies are lessening. Theories for this one: dog or peanuts.)

 In truth, though, not everyone wants to make accommodations for us.  One person told me that PB was so important in their children's lives that they would be seriously upset if their school banned it.  I graciously changed the subject before my emotions got the best of me.  When my poor unsuspecting husband came home from work he became my sounding board for my pent-up snarky attitude,  “All right, then!  Because there are people like THAT out there, we will home school our boys.  It’s financially next to impossible, and I looked forward to working one day.  But, SURE, I will teach EVERY subject to just my OWN children in my DINING ROOM.  I will do that.  So THEIR kids can eat peanut butter at school.”  And I cried.  Hard.   

 I’m not proud of my attitude, and the Lord definitely dealt with me over it.  The lesson learned was that: 1. Not everyone will want to help us accommodate our children.  It's a painful truth, but there you go.  And 2.  If the Lord doesn’t heal them, homeschooling would indeed be the very best way to safely educate our little men.  Not everyone can home school, so I still think schools and parents need to make accommodations.  For us, though, with sacrifices, we CAN do it.  When it became clear last spring that one of our older boys also would benefit from coming home, my heart was already primed and ready for the task.   

 I’m thankful that the Lord continues to work with us as we figure out how to balance it all.  We still live with this reality every day, but God gives us daily peace that we're doing the best we can.  One day I hope I can write a post with the title: Z and S are HEALED!!!  For today, though, I'm thankful for the journey. 

Right now our guys are happy and healthy little men!

As I wrote this Z and S were under my elbows, talking to me about their day, and laughing as they played together.  What a gift!  (and a hindrance, so forgive my grammar and other issues, ha!)  I am so thankful for the miracle of all four of our children and for a kind and loving God who carries us through every step of this journey!  

Today's post was inspired by the following link to another mom's story of her scary day that began so simply:

http://www.allergymoms.com/classroom.pdf 

Love,

G

For the Love of the Lord and Reading

If asked to pinpoint one thing we thought we were doing well in parenting, ignoring our many shortcomings of course, bedtime routines of reading and praying together would have to be a star on our chart.  There is something special about everyone coming around a story together and then praying to top it off.  The whole house seems happier when we’re spending this time together.  Lots of parents share this routine, so this is nothing new, but the fact that we still read to our big boys was something that took intentionality for us.  I admit, there are some nights when "getting to it" requires a personal pep talk and second wind of energy, but there is not one time that I ever read to my kids that returned void of warm fuzzies and thankfulness for the time well-spent.

 Our joy of reading together actually started before children arrived.  Thanks to the 20 hour drive between our home in South Carolina to my side of the family in Minnesota, and the 6 hours to My Husband’s family in West Virginia, we have always had long stretches of time to kill.  On such trips, the Hubs and I have shared together such titles as Tuesdays with Morrie and Angela’s Ashes.  Before there was www.audible.com there were books on tape or CD, but when we didn’t have a recorded book, we would read to each other.  Wild concept, I know – actually reading to each other.  I admit we would pause while passing through the mountains of Ashville, NC, or Elkhorn Mountain of West Virginia.  The switchbacks, narrow passes, and 18-wheelers make a prime recipe for motion sickness.  But aside from those mountainous passes, our journeys are mostly straight open road and easy reading. 

Reading to the Belly.  Pregnant with our first guy.  I know, it's such a flattering shot, ha ha.

When children came, reading together went from being a road trip activity to a regular routine.  We read to our first son, A, while he was still being knit together in my womb.  We enjoyed the rhythmic poetry of Shel Silverstein’s Where the Sidewalk Ends and A Light in the Attic.  Once A was in the world, we eventually got into a routine of reading a book before naptime and bedtime.  When N came along, we began reading for two in our arms.  Thanks, Dad, for that extra-wide chair you gave us for the nursery!  We would read a book for A and a book for N, plus any “one more!” books they happened to request.  Now that we’re all too big to share the chair, we sit together on the bottom bunk, or I sit in a chair while our now FOUR guys lie together on the floor of the living room for their weekend ritual of indoor camping.

The Hubs reading with the Big Boys, N and A while wearing his "Peter Jackson Glasses," February 2004

Admission of guilt: we strayed from reading to the big boys for a little while.  As they grew and learned how to read for themselves, we unintentionally phased out their story time.  The twins were babies and couldn’t read for themselves, so of course we began the routine for them.  But bedtime rituals were getting long among four children, and we were exhausted.  It seemed like the big boys’ story time was a natural thing to let fall to the wayside.  Over time, though, as the younger twins started to get beyond just board books and into actual stories, like If You Give a Pig a Pancake or a personal favorite, The Monster At the End of This Book (it hypes up the kids, but it’s soooo funny), I’d often see A and N float toward their door, toothbrushes in hand, to listen as I read to their brothers.  Every once in a while, as a special treat, I’d finish up with the twins and read the big boys a short book from their past. 

The Twins, S and Z, and Me.

It wasn’t until last summer, however, when A and I were both reading the Narnia series (me for the third time, and him for the first) that we started reading chapter books together and the routine was given new life.  A was reading slowly, and I needed his book.  (“Needed” is the proper word because when I’m reading a series I get so hooked that I practically go into withdrawal if I can’t keep my fix).  So we decided to read it together.  We were initially taking turns reading the pages, and he’s an excellent reader, but he kept asking me to keep reading to him.  And N kept joining us and asking for more.  It became clear that my boys still needed their story time.  

Still reading with the Big Boys, A and N with the Hubs.

I felt like we had a connection back that I didn’t know we’d lost.  It now spurns conversations about the books as well as subjects beyond the pages.  We laugh with the characters in the books, like when the very valiant Reepicheep takes on Eustace in The Voyage of the Dawn Treader, or we talk about why a particular storyline is so very sad, like in Number the Stars dealing with World War II and the Holocaust.  And we teach about being generous and helpful like the rats in Mrs. Frisby and the Rats of Nimh, or about being brave like Mrs. Frisby herself. 

The bonus to the end of our chapter for the evening is the prayer time we share.  Our nightly prayers began as little prayers for our sweet babies.  We’d recite “Now I Lay Me Down To Sleep,” and then we would ask the Lord to bless their rest through the night.  Over the years, though, as the big boys have grown, and the twins have faced life-threatening food allergies, they have become very real conversations with God.  They often include a quick review of things from the day that were special, and sometimes they include things that didn’t go so well.  If we’ve made a parenting mistake, like accusing the wrong son of leaving his clothes on the floor, or because we were extra irritable at dinner (you know, therapist couch material, ha!), this is usually the time when we fess up, explain ourselves, and, when necessary, apologize.  The boys include requests for people we love, and we give thanks to God for healings and blessings he’s given us.  But for me, my prayer still ends with asking the Lord to bless my guys’ rest, and to draw them close to himself…with the added request that the Father would heal our sons’ allergies.

Bedtime is not the only time we read and pray, but bed time and meal times are when it’s routine.  Because of this routine for both reading and praying, it makes the impromptu times in between become more natural.  They don’t think it’s weird to grab a book and curl up with it or to stop for a second and pray for the ambulance that just passed.  But I think the best thing about this whole reading and praying thing is that we’re doing it together.  Everyone is gathered around the same thing at the same time.  After a day of constant movement, errands, conversations, chores, events, and more, for just a handful of minutes per night we slowdown and connect.  We shut out the world, transporting ourselves somewhere else, and then we return to reality to pray to the Father who makes it all possible.  It is indeed worth it to carve out the time to read and pray with our guys.

**Links to some articles I’ve read recently that reinforce the idea that READING IS WONDERFUL!**
"Raise a Lifelong Reader"

http://www.pbs.org/parents/experts/archive/2012/05/raise-a-lifelong-reader-by-rea.html?utm_source=Facebook&utm_medium=fanpage&utm_campaign=pbs

(The title of the following article has little to do with the content.  It's more about examining why boys don't get into reading as much as girls, and some ideas about how to get that to change.)

"How to Talk to a Little Boy"

http://www.huffingtonpost.com/mobileweb/lisa-bloom/how-to-talk-to-little-boy_b_1473167.html  

 I looked for some articles on praying with children, but didn’t find what I was looking for.  One suggested putting a cloth on the floor and opening a Bible in the middle.  If this floats your boat, go for it.  To me, however, that sounds more complicated than it needs to be.  We just talk to God about our kids.  And, honestly, they love to hear us talk about them.  They love hearing their mom and dad asking God to help with the bully on the playground or their grades in school.  They love hearing their request that they just mentioned leave our lips because we feel it is important enough to ask the Father about it.  And we encourage them to petition the Father to help them with the test at school or the brother that gets on their nerves.  I would just be sure they still hear their parents pray for them.  It models how to pray, and it shows them that we love them enough to pray for them. 

In the end, I did find this one article that I thought was pretty helpful

“Praying with Children”

http://www.ministrymatters.com/all/article/entry/1623/praying-with-children

Rice Chex Chicken Nuggets

RICE CHEX CHICKEN NUGGETS:

(Note: I used to make these with commercial "Rice Bread Crumbs" that I found at our local health food store, but they turned out soggy and tasted weird. So we tried RICE CHEX INSTEAD!)

 I had Z and S (age 3) bash baggies of Rice Chex cereal into crumbs (about 5 cups). 

Then I mixed about 1/2 tsp oregano, 1tsp garlic powder, 1/2 tsp onion powder, 1 tsp salt, and 1/4 tsp pepper together and A and N (ages 8 and 9) combined the seasonings with the Rice Chex crumbs. 

I cut a pound of chx breasts into 1.5 inch pieces. A and N formed an assembly line coating them in extra light tasting olive oil (with salt and garlic powder sprinkled in it), then in Rice Chex mixture, then onto the cookie sheet.  (NOTE: You have to really push the crumbs into the chicken.)

Baked for 20 mins at 400 degrees, then turned on the broiler for 3 mins to crisp the tops.  THEY WERE AWESOME!!  Even I, the chicken nugget hater, LOVED these!  ENJOY!

(Update: After eating these for lunch and dinner 3 days in a row (by request), we've determined that the twins are sensitive to oregano.  Boo.  THANKFULLY these still taste AMAZING without it!)