Come September, Please Remember....

What this world needs is a new kind of army — the army of the kind. ~C. Amory

The first day of school is a momentous one for most parents and children alike. The excitement and expectations of a new year with friends. The anxiety and trepidation of a different school or an unknown teacher. Many kids, mine included, spend time picking out a special outfit, packing their new book bag, and prepping their new lunch box for another year. And I'm sure the school or the teacher have supplied a checklist of things to add to your own pile of necessary items with which to arm your child to conquer the coming year.

None of this is different for a parent with food allergies. What is different is the emails that are also sent the night before to the child's teacher, so they're aware of the allergy. My necessary items list varies because it has the ever important additions of Benadryl and EpiPens that I make sure are packed along with Scootch's new pencil and folder. That flood of school paperwork starts before school even begins because I'm filling out a step by step protocol of what to do if my child is having an allergy reaction, or possibly dying, and trying to not imagine those scenarios in my head. And instead of telling my kid to have fun and make new friends while I walk him to the bus tomorrow, I'll be going over with him the food rules; no sharing, no stealing, and no eating anything we didn't pack for him unless someone checks the label and can tell him it is safe. I have to remind him that he can't hold hands or kiss his friends on the cheek because he doesn't know for sure who had peanut butter in their lunch and who didn't.

I also know that on Back to School Night I'll pipe up that I'm the parent with the kid everyone doesn't want to have in their class. The one that makes the class parties so difficult because the food needs to come from an approved list, and stresses that the teacher makes the class wash their hands with soap and water after lunch period. The one that makes other parents get defensive because life would be so much easier if their picky eater could just eat his peanut butter sandwich in peace because that's the only thing besides waffles he'll eat on a consistent basis. And that Scootch's peers will tell my kid he's missing out because he's never eaten a Snickers, and can't get a cone off the ice cream truck, regardless of the fact that even if he did, it would make his mouth burn and he'd throw up and possibly stop breathing instead of enjoying it.

Could every one of you do me a favor? When you kiss your child goodbye before sending them off to school this September, please, just ask them to be kind. We know it isn't easy for everyone else to deal with, because it isn't easy for us, either.The fine line we walk on between freedom and safety is a hard one to manage at the best of times, but it really can mean the difference between a good day at school and a trip to the hospital. Scootch endures scratch tests, blood tests, and visit after visit to the doctor, so he definitely doesn't need anyone else to point out how weird or different he is from everyone else. He's well aware that most people don't have three different primary doctors. The fact that he won't eat what you're offering him doesn't mean he doesn't want to be friends, it just means he knows that it could make him sick. And he doesn't want to throw up on your brand new school shoes. But, most importantly, please just wash your hands after you snack on your Nutty Bar. We're not asking to annoy you, and no, I'm not proposing a nut ban on school premises (although that really would make Scootch's life easier!) I truly do know how hard it is to keep a picky eater on the right side of the weight curve. It really is just the simple fact that the friendliest hand, for Scootch, is a clean one.

Hoping we all have a safe and wonderful year!

The Children’s Garden

You cannot change the circumstances, the seasons, or the wind, but you can change yourself. ~J. Rohn

I still cannot believe Scootch has grown this fast. I remember the summer after he was born, when my anxiety was still an immobilizing disorder. I remember that fear of going outside, the rush of uneasiness if I even thought about doing something that involved taking my baby out of the house. Thankfully, its been a long time since those days. But, I must admit that there is still fear of the unknown present, that little rush of discomfort, every morning as Scootch steps out of the house to meet the bus.

Scootch has been coached and prepped about his allergies and the food at school. Sit at the special table for lunch, don’t share food with your friends, always ask a grownup if you’re not sure about something, always ask if you’re given something we didn’t pack for you….he’s heard them all. He’s repeated them to me. We’ve practiced what to do if he feels like he’s having a reaction. I’ve tried to prepare him for any possibility he might encounter. And still, after all that, he could not wait to go to school. To conquer the great grown-up wonderland of changing classes, new teachers, riding the bus, having recess, and eating in the cafeteria. No fear for him. No reservations. I guess I must be doing something right that he isn’t terrified of leaving the safe sanctuary of home. Like I was. Sometimes I still am.

I find it ironic that I suffered through the worst anxiety disorder of my life after giving birth to the boy who now makes me worry the most. I sometimes wonder if that was my initiation period to becoming his mother. If you can conquer agoraphobia, night terrors, and anxiety attacks, this food allergy thing on a daily basis should be a walk in the park, right? It still doesn’t get any easier to let him go face the great big world alone without me. At least I knew my fears were in my mind. There really weren’t people waiting to run me down in the parking lot, or break into my house and steal my kids. Scootch’s allergies are real, and his reactions are even more terrifying. But being a parent means doing what’s best for your kids, and its in Scootch’s best interest to know how to take on the world by himself, a little bit at a time. Kindergarten means one small step for Scootch, but one giant leap for Mommy’s piece of mind.

Only 171 days left.

Flying Colors

A watched child never learns. ~Robert Brault

Scootch is largely sheltered since I've been sent home from the workforce. After Little Bear was born, I went from working almost 30 hours a week to only a mere 7, so putting Scootch back into daycare with his friends was not a feasible option. I've tried to join story time at the library, and other play groups like that to keep him with peers, but the truth is that he is a solitary soul. He will sometimes play with others when others are available, but, for the most part he likes to just run around and observe everybody else. He really enjoys just holing up in the playroom and making elaborate train layouts and complicated arrangements of Matchbox cars. In addition to this situation making me worry about his social development, it also doesn't give me many opportunities to see how Scootch handles himself with others regarding his allergies.

Our church has a Coffee and Fellowship hour following services on Sunday morning. People in the congregation take turns hosting it every week, usually supplying homemade baked goods or some bagels arranged on a push cart to supplement the available coffee, tea, and juice. The kids in the congregation, ours included, like to sit under a few tables that are against the wall in the lobby and hide out while they eat the available snacks. Some congregation members are aware of Scootch's allergies and try to be accomodating, but we usually bring a packet of cookies or fruit snacks as a substitute for Scootch so we can be assured he has something to snack on as well. It has proved to be a valuable time to teach him about food awareness. I've told him repeatedly that he's not allowed to have anything off the cart unless Mommy or Daddy or MeMa gets it for him. And that if anyone hands him something, he needs to ask for permission before he eats it. But truthfully, I always wonder if these teachings fall on deaf ears. He is, after all, only three and a half. He barely remembers instructions I give him in the time he runs from the kitchen to the playroom. Today hubby told me he witnessed our little lessons rubbing off on Scootch at the Fellowship hour after service this morning. And I couldn't be more proud of him.

I had been busy helping Monkey dole out her Girl Scout cookie orders to the right owners, and Scootch was sitting alone under the tables, patiently awaiting the arrival of his sister and friends. Today's offering was homemade chocolate chip cookies, and a woman noticed Scootch was without one. She bent down to look under the tables and ask him if he wanted a cookie and offered him one from the trolley. Scootch replied to her, "No, my mom has my cookie. I can't have those." By that time, Daddy had gotten the packet of safe treats we brought from home and set him up with snacks and a napkin. So when I was finally settling Monkey next to him with her own treats, he was already munching away happily and paying me no mind.

Relief. Pride. Happiness. All the best feelings to have as a parent. And I got to feel them today. He passed another test with flying colors.

Age of Awareness

Humor is perhaps a sense of intellectual perspective: an awareness that some things are really important, others not; and that the two kinds are most oddly jumbled in everyday affairs. ~Christopher Morley


Since Scootch's diagnosis, I can't even begin to tell you how much reading I have done. Knowledge is power, right? I should be able to supply energy to the entire neighborhood with how much power I've accumulated. And yet, I still feel like I'm learning something new everyday.

I recently joined another website community for help regarding Scootch. They lured me in with a feature on managing anxiety associated with food allergies. (I think they just should have named it, "We're Doing This Feature For You!") The entire presentation was helpful, validating, and enlightening, but there was one point in particular that has been worrying me incessantly. They talked a little bit about empowering your own child by letting him/her become their own advocate, and most of the mothers listed how well their children do asking for permission to eat things, and knowing to tell strangers that they have allergies. One mother even said her son has known his food limitations by 2 1/2.

Huh. Scootch is almost 3. And I have never taught him to say he's allergic to eggs and nuts. Why this never occurred to me I can't say. Somehow in reading to him, teaching him his colors, numbers, alphabet, and how to go potty, I never have actually sat down with him and explained TO HIM that he has food allergies. He's always been present when they were discussed, I've told him he can't have certain things because they will make him itchy, but I've never actually filled him in on it. I found myself unsure of how much he actually knew and comprehended about his condition. Until last Saturday.

Last Saturday was Easter Eve. And Easter Eve in our house involves dying Easter Eggs. I actually remembered to buy the contraband eggs the night before while I was out at the grocery store (and then promptly forgot to buy the egg dye), and hard boiled them in the morning to prepare them. So by afternoon, after lunch, I had everything set up and announced we were going to dye eggs for Easter, and Scootch told me he couldn't. "I no do eggs, Mom. I don't wanna be itchy." Dumbfounded. That was my reaction. It became blatantly obvious that Scootch had grasped a great deal of his condition by himself, even though I didn't have a whole sit down talk with him. He obviously remembered how horrible he felt back on New Years Day when he was exposed to nuts and broke out in hives. He obviously has been listening when his sister has been integrating mini lectures about his food allergies into their play kitchen sessions. And he obviously is old enough to comprehend and internalize the stuff I have been talking over his head to others for the past 2 years. A big "DUH" to Mommy for not thinking he would simply absorb this information just like he's picked up everything else in his short life.

To tell you the truth, I think the whole reason I haven't had the food allergy talk with him is that I didn't think he was that self-aware yet. My first clue should have been that he has grasped the awareness concept of potty training, but I think in some respects, I've been short changing him a bit by thinking he is still pretty much a helpless baby. In actuality, he'll be 3 in less than two months, and is as opinionated and bright as the Monkey was at that age. He confounds me again and again, day to day, with the observations and queries that come out of his mouth with no provocation. As much as I can sit here and rationalize that I didn't do it because I wanted him to still be a carefree little boy, I'm now kicking myself in the head and feeling guilty for insulting his intelligence by not thinking he could handle the information sooner. He obviously has some knowledge about his food limitations, and it hasn't dampened his carefree attitude one bit. So instead of sitting here worrying how much information is too much information, I'm going to start giving him the basics to go on for now. Hopefully by the time we get to his 3rd birthday, he'll know his full name, his address, and his food allergies.

The Man Bag

"A father carries pictures where his money used to be." ~Author Unknown

I don't profess to be a girly-girl. Feminine, yes. I definitely have skirts and heels and can doll up with the best of them for special occasions. But as for the glitter and ruffles on an everyday basis, I'll let Monkey keep those bases covered. I'd much rather possess something functional and durable, even if it only comes in pea green. So I've never been too worried when it came to baby accessories that my husband would ever be embarrased to be seen with a sling or a diaper bag, because I've never owned one in pink or flower print, or any other potentially emasculating color. We've come to this crossroads for a different matter entirely. My husband requires a small bag of essentials while he's out with Scootch, not because he'd be embarrassed to carry the ones we currently own, but because big boy Scootch is now potty trained, and we no longer have the need to schlep an entire bag everywhere we go for his diaper changes. So what essentials, exactly, does he need? Scootch's emergency supplies, of course.

Now that we are a family of 5, we tend to divvy up the kids when one of us goes out. Usually the errand-running parent takes one kid, and the one staying home will have the other two. Its not a problem for me, since I carry an Epi-pen and Benadryl in my purse. But the temperature requirements for Scootch's medicine prevent it from being something that could be housed in a glove compartment of a car, and my husband doesn't carry any type of pouch with him. So on the occasions Scootch goes with his father solo, Daddy has nowhere to stash an Epi-Pen and some Benadryl unless he wants to have it stick awkwardly out of his back pocket. My husband brought this up with me the other day, and we discussed it, and I came up with a solution any good wife would - I bought him a makeup bag. ;-)

As you can see from the picture, its a perfectly masculine looking makeup bag. But still, just the right size for an Epi-Pen and some Benadryl Perfect Measures. And it fits right on the windowsill next to the front door, so Daddy can grab it in the way out. So now Daddy has some portable peace of mind for himself, and for me, so I don't have to stress that they're out there unprepared.

House Arrest

Hubby and I went out twice for the first time in a long time this month. The first time we ran away for 3 hours in the afternoon to catch a movie, and the last time was a wonderful dinner out with friends followed by cards, dessert, and drinks, back at their house. It catches me off guard how insulated we are, though, when we do happen to venture out. People talk of movies they've seen and events they've attended, and the only things I have to contribute are that I just scored a $10 off coupon to the newest Tinkerbell movie for the Monkey, and we went to see a life sized Thomas the Tank.

Between keeping the kids on schedule and the money tightrope we're walking at the moment, I understand its probably going to be a couple more years before we can go back to planning twice monthly get-togethers with friends again, but my other biggest hurdle is myself. Particularly my issues with entrusting my kids with other people.

I wonder if it would be so bad if Scootch didn't have such bad food allergies. This week alone I almost had a nervous breakdown filling out his Allergy Action Form for his new term at school. You think you've prepared yourself for the worst that could happen, but when the symptoms are listed in checkbox form ranging from "if child has ingested a food trigger and experiences no symptoms" to "if child has ingested a food trigger and experiences thready pulse, low blood pressure, fainting, pale, or blueness" and its up to you to tick off the box that tells them what to do in order to save him, believe me, the vision starts to swim and you start wondering if your lunch is going to end up back on your desk for an encore appearance.

And truthfully, I think its hard to gauge the perfect balance needed in a caregiver for a kid with food allergies. You want someone who is great with your children, compassionate, and loving, but ballsy enough to stick your kid in the leg with a 1-inch needle if the need arises, no questions asked. So we've basically stuck with family members when we've needed a sitter. Not that they're all at the same caliber, but for some reason I feel like if they're related, the more vested they are in the interest of Scootch, and the better job they might try to do at keeping him alive for the 5 hours I'm gone. Second to that, they're usually left in the company of adults versus the great high school kids we used to employ. I know there are some mature high school students out there, but I still feel that life experience is a better qualifier in my case (see the point about the one inch needle insertion above).

I try to reason with myself that its rare that Scootch will have a reaction. And I try to repeat to myself that we always surround our children with loving, well-meaning people who aren't afraid to take a little extra care to ensure the safety of our kids. But then hubby turns on an old episode of Freaks and Geeks so we can see vintage John Francis Daly, and it turns out to be the Chokin' and Tokin' episode where Bill is hospitalized after the kids in school stick peanuts in his sandwich as a prank.



So now my new hobby is researching home-schooling......

But seriously, I'm trying to take the time now and re-evaluate myself and my reactions to Scootch's allergies. I don't want to obsess and over-evaluate who to leave our kids with so much that our kids pick up on my nervousness. I don't want Monkey over-burdened with the task of being a food allergy enforcer when there aren't family members present. I don't want Scootch to fear going to the ice cream shop with his little league team after a game, or dread lunchtime at the school cafeteria. Maybe he'll get laughed at for always having hand wipes on him to wipe down his spot at the table and refusing to kiss the girl he likes behind the bleachers without asking her if she ate a Snickers bar in the past 5 hours, but I'm hoping those kinds of quirks will earn him a loyal following, even if it isn't a large one to get him through his childhood years. And I think that's the most important. I want him to have a childhood. A happy one. And that means Mommy and Daddy will need to get away from time to time.

Hurdles

When the world says, "Give up,"
Hope whispers, "Try it one more time." ~Unknown

I like to make plans. Maybe its due in part of my OCD nature, or maybe its because I grew up in a boating family that charted and plotted a course in the summer before undertaking it. Either way, I've grown up to be a planner. It helps to keep the anxiety away when I think I know what to expect. But its becoming more clear that I should have taken up a sport like track and field in high school instead of indulging in something safe and choreographed like the Drill Team I was on. Hurdles seem to be a common fixture in my life.

When my husband and I got married, we had a plan to stop at three kids. Plans changed after Scootch was born, and I found myself unable to function or leave the house without help. So we decided it would be best to change the plans and stop at two. We've made plans since then, we just recently tried to start up our own business, bought a car, and basically have tried to stick to the plans. Apparently, though, someone else has different plans for us.

Two Fridays ago, I just got confirmation that we'll be expecting baby #3 in December, despite the measures we went through to ensure a limit on our family numbers. The anti-anxiety medication I've been on will have to be stopped for the baby. I'll have to quit my day job and hope that we'll still survive without my additional income paying for the food and utility bills since the business isn't pulling in any money yet. And I'm already stressing over having to remove my kids from their wonderful school, and turning their days full of friends and learning into being walled up at home with an over-anxious mother.

Its hard to keep feeling like I can keep it together when so many things start spinning out of control at once. And as much excitement we're feeling over actually getting the 3 kids we originally planned for, the hurdles are looking a little daunting and numerous. But I'm hoping. I'm hoping that whoever changed our plans will also point us in the direction of the solutions. I'm hoping this is an experience that might help me recover some strength against my fears instead of further exiling me to the shadows of my anxieties.

I'm hoping that hope will prevail.

The Rookie

When you get over the shock of any diagnosis, the second step is usually the questions. With Scootch's diagnosis of peanut, tree nut, and egg allergy, you bet I had plenty. I felt like an allergy mom rookie, still learning the ropes and afraid to question the inane things out loud for fear that people would scoff or laugh at their absurdity. As the anniversary of his diagnosis approaches, I made a short list of the funny, and surprising things I've thought about in the past year;

- What the heck is a water chestnut? Is it in the nut family and something Scootch could potentially be allergic to?
The water chesnut is an aquatic vegetable, given a nut name for its peculiar appearance. It does not pose a threat to nut allergic individuals.

- Should Scootch be prohibited from playing with acorns?
Oak and chestnut trees belong to the Fagaceae plant family. Although they have some biological similarity to nut trees (cashew, walnut, almond, pecan, etc.), the two plant groups are distinctly separate families. Their allergenic proteins are not the same. That means someone who’s allergic to tree nuts will not automatically be allergic to acorns or chestnuts. But, there are documented cases of anaphylaxis to acorn or chestnut. The greatest danger is if he should happen to ingest any of them. The part that causes the reaction is the inner 'meat', so just picking up a whole acorn shouldn't be too much of a problem if his hands are thoroughly washed afterwards. However, if he does pick up a nut that has been smashed or compromised and then sticks his hands in his mouth at any point, there is the potential for a reaction. So I discourage him from touching them just in case.

- What about pine nuts?
Pine nuts (pignoli nuts) are technically seeds. However some allergic individuals show sensitivity to them.

- Mangos are related to cashews, and plums, cherries, peaches, and nectarines are in the almond family. Should he be avoiding those foods as well?
No. These relationships are viewed as being of a "second cousin" type variety and most allergic individuals have no reactions to the fruit even when allergic to the nut of the same family.

- A coconut is technically a tree nut, but in the palm family. So is that something to avoid as well?
Since coconut is in the palm family, it doesn't cross-react with tree nuts. However the FDA has labeled it as a tree nut in its criteria, and therefore is listed as such in the allergy information. Most nut allergy individuals tolerate coconut fine.

- What about coconut oil in bath products?
Since it is a palm oil, the reaction varies with each individual. Coconut oil is generally deemed safe for topical use for people with nut allergies.

- Shea butter is made from shea nuts, should that be avoided?
Yes.

- What about nutmeg?
Nutmeg is made from the seed of a fruit bearing tree, so it is not a nut.

- Since peanuts are actually legumes, should I be looking for any legume allergies as well?
Soy beans, lima beans, green beans, and peas, are all included in the legume family, but additonal reactions vary by child. Thankfully, so far, Scootch hasn't shown any sensitivity to other legumes.

- Did you know that some bread crumbs contain eggs?
Not until recently. And I feel guilty for that. Just goes to show that you really need to read EVERY label. Even if common sense tells you that the ingredients should just be stale bread and air.

You get the idea. And unfortunately, I'm still learning. We go in for review in a little over 14 months when Scootch turns 3, and who knows? Maybe I'll get a promotion for all my hard work. ;-)

Note to Self

When the daycare teachers mark off on the experience sheet that your child needs extra clothes, I need to heed the warning and pack more clothes. Otherwise they do creative things to get my attention, like use Scootch's mittens on his feet since he stomped in puddles today and didn't have any extra socks to wear.

Monkey footed socks and all, I love this little boy.

Gifts of Motherhood

The Monkey is a talented kiddo. She's bright and (usually) articulate when she isn't pretending to be a puppy dog or talking in her i-ey babble (which involves adding an "ey" to the end of every word. It sounds something like "Mommy I-ey wanty juicy pleasey"). The Mr. Hyde side of this is that she's very headstrong and independent. She knows exactly what she wants and how to get it. And she can get very stubborn about the 'getting' part of it, as in she wants to do it herself.
I'm sure you've already seen exhibit one above. That was the gift she left us for Valentine's Day. Apparently having an accident wasn't worth waking us up for. She just decided she'd clean it up herself with an entire roll of toilet paper.
Now I do admit I'm at least half to blame for this. Her entire life I've tried to teach her how to do things herself so she would establish a good foundation of self worth and self reliance. This is coming back to bite me now that she's decided age 3 1/2 is only a step away from getting her own apartment.
But I've decided I'm just going to try and ride this out. If I truly want to give her all the rewards a gift of knowing the breadth of her self reliance can bring, she's going to have to learn her limits at the same time.
And Mommy is just going to stock up on Mostenbockers.

Civic Duty

I was called for Jury Duty for the first time a few weeks ago. For some reason, it still surprises me how much my son's food allergy affects me and will affect him as he gets older.
The first thing that struck me was when I was reading the instructions on my jury notice.
"In order to ensure the safety of those entering NJ courthouses, all persons,
including jurors, are screened when entering a NJ Superior Court courthouse.
Chemical agents, pepper sprays, or anything resembling a weapon, including scissors, will not be permitted into the Courthouse - for the safety of the public."

Hmmmmm. Does an Epi-Pen qualify as something resembling a weapon? To be on the safe side, I removed it from my purse and stuck it in my glove compartment. I'm sure a 1/2 inch needle would raise a few eyebrows on its way through the conveyor, not to mention what color the epinephrine liquid would show up. But of course there was the one day, upon returning to jury duty from over the weekend, that I had returned the Epi-Pen to my bag and forgot to remove it. Luckily I arrived in enough time to squeeze in an extra lap to the parking deck and back.
But I do have to tell you, I felt a little naked without it. Even though Scootch wasn't physically with me in court, and logically I would have to go back to my car where the Epi-Pen was if anything happened and I needed to get to him, it was just amazing how bereft and ill-equipped I felt as a mom to a child with allergies without it on my person. It was almost as if I forgot to put on underwear.

The second most striking element was the food, of course. The vending machines, the fellow jurors, the staff; the smell of nuts was literally in the air. There were 24 items out of 59 in the vending machine that were nuts or physically contained them, and I'm sure the remaining 35 were processed in a contaminated facility. Jurors snacked on nuts in the assembly area, or dropped them in the chairs in the deliberation room. I was literally imagining all the seemingly innocuous nut traces being left behind on every surface. Scootch hasn't shown sensitivity to airborne or trace nut particles, but I do fear its only a matter of time. And the free hand sanitizer the court provided is a nice touch in flu weather, but doesn't do much for exterminating allergens.
Sometimes I wonder if I will ever be de-sensitized from it all. But then again, my hyper-sensitivity also could be deemed an advantage for being allergy concious about my surroundings.

I spent 3 weeks on Jury Duty, and met some very lovely fellow jurors during the process. But as Scootch's mom I spent those 3 weeks politely refusing the mixed nuts and pistachio crackers, and thoroughly washing my hands before going to pick him up from daycare in the evenings. Hopefully Jury Duty for him in the future will be just as simple to safeguard.

(P.S. The attemped cookie recipe in the previous post was a hit! So much so that I didn't have time to photograph them before they were all eaten! So hopefully next batch!)