The Little Things

What is it about one small restriction that seems to encompass my life?  It touches everything.  From dinner time, to snack time, to leisure time, to craft time.  It's not just that I can't ingest corn derivatives.  I can't be around them when they are airborne.  And the fact that I have this unique intolerance (which touches all sufferers in unique ways) means that I can not be a pillar.  I can't be in a position of supervision because I can't be reliable.  There are too many variable in life to prevent exposure completely.  Which means reactions are impossible to predict, and just as impossible to ignore.  Which, to put it bluntly, makes me unreliable.  Not irresponsible, mind you, simply unreliable. 

A corn allergy makes me different.  It does separate me from the others.  Go out for coffee?  Sure.  But I won't be drinking any.  And we need to sit outside.  And...hopefully the rest of the group is up for that awkwardness.  Because, right or wrong, there is always some awkwardness. 
Group projects are a challenge too.  It seems like most work done in a group setting convenes around food.  Pizza.  Coffee.  Yoghurt.  Even donuts.  You meet at a restaurant, or in a small room and bring food to break the ice. 
Corn allergy, that sort of puts the chill back in the air.  Sometimes, I get so used to this allergy that I forget that I'm the oddball out.  I simply can't be a part of 'that' group.  I have restrictions. 
It's the simplest little things that fall through the cracks.  And those little things are the ones discussed over popcorn in informal gatherings, or pizza after the official meeting.  Little things that no one thinks are important.  But they're details.  And without those details, it's hard not to feel left out, as friendly and open as everyone else tries to be. 
It's not intentional.  I want to stress that I realize it's not intentional.  (I have to tell myself not to be paranoid when these things come up)  But it's usually an unexpected shock, like someone balanced a bucket of cold water over the front door and I'm the one who opened it. 
Corn allergy so drastically impacts what we eat, our dining options as well as choices, that it carries over into every aspect  of our lives in ways that other food allergies and even Celiac Disease do not.  All food restrictions are hard, but when it comes to corn, that's when I feel really different. 
And when I think about why I missed these little impromptu gatherings where details were addressed and dismissed, it's generally the corn aspect that lies at the root of things.  I know from the outside I look like I'm just not interested.  But the fact is, the risk just doesn't outweigh the potential bonding.  I love chatting informally outdoors where I'm not assaulted by perfume or personal care products, and food fumes disperse quickly.  But it's hard to get motivated to go somewhere to watch people you almost know enjoy a meal. 
And it's hard not to feel like you're in the spotlight when it's the little things you don't do, that make you miss the details. 
It's not a bad thing, necessarily.  It's just different.  Another little quirk.  Quirks can be endearing, they can be overlooked.  It just takes a little work.  And a little more work to keep track of those teensy little details that slip through the coffee-hour cracks.  And, of course, a good sense of humor to avoid letting those details get to you.  (This is the part I'm struggling to keep this weekend) 
Corn.  It doesn't just affect our diet.  It affects our lives. 

Dropping the Donkey

Aesop has a fable about a miller and his son who take a donkey to the market.  Along the way, they receive repeated criticism and advice for their handling of the donkey.  In the end, the donkey falls into a river and floats away. 
Some days I can really relate to that miller. 
With the food allergies and the migraines, I kept circling back to square one, but at least I felt in charge.  We were solving a puzzle.  Most of the pieces fell into place under the headings of either "corn" or "gluten". 

I still deal with the whole donkey-in-the-river scenario sometimes.  I feel like I need to use mind over matter to deal with symptoms rather than the simple (and sometimes not so simple) act of avoidance.  It's not entirely rational, but I spent a long time working with professionals on the premise that my symptoms were just stress related.  Just because they aren't doesn't undo that work.  

You'd think I'd have learned. 
The trouble is, when you are in over your head, you turn to others for advice.  Sometimes, you get lucky and stumble into people who know the best next steps.  And sometimes, you don't. 
This is what seems to have happened to us with Bumblebee. 
We've spent 4 years working with professionals who felt that labels hurt kids.  That anxiety is rational.  That we, as a family, were doing something wrong. That we needed to really think about it.  That we should analyze our actions. 
We've been told to and tried rationalizing, bribing, and taking away priviliges.  We've tried encouragement and sticker charts and good-will offerings.  We've tried starving her into verbalizing if she won't touch dinner, and we've tried being a family of short order cooks.  We've stood firm.  We've given in.  All on the advice of others because what we were doing wasn't working. 
It turns out that rather than getting advice on how to TREAT anxiety, I should have been learning about how, exactly, Anxiety Disorders work.  (And it is worthy of those capitals, believe me)  Because the current belief is that they aren't rational, by any stretch of the imagination.  There isn't control over her feelings and since those feelings are overwhelming, she didn't have control over where they led her. 
By treating her like she did have control, or bending over backward to 'compromise' and then being frustrated at her refusal to cooperate; we've got a child who's no longer in tears.  She's angry, she's sullen, she doesn't want to treat us with respect because she doesn't feel respected.  She put up with food allergies, and dietary mayhem for years.  And us?  When she felt 'sick' we dragged her off and abandoned her at school, where she was overwhelmed and didn't have the tools she needed to deal with those feelings.  It doesn't matter that I was dying inside each day I left her, or that everyone told me it was the right thing to do.  To her, what matters is that she felt alone and overwhelmed.  And then once in awhile, she is terrified and needs us again...and at the same time, she hates us for being needed. 
Rather than getting her through with our own problem solving techniques, we asked for advice.  And based on the results, I feel like I'm watching my daughter floating down the river on Aesop's donkey. 

The good news is, we're no longer looking for what's wrong with us.  We aren't hunting in the dark for a magic cure.  There isn't one.  We just need to fish that donkey out of the river, dry her off, and set off again.  And maybe this time, we'll make it to market unscathed. 

Just one more thing to worry about with allergies

According to a recent study, children with Celiac Disease, like those with any chronic illness, are more at risk for emotional and behavior problems than their peers. 
I don't think it's a huge leap to say any food allergy would work similarly. 
And I can't help but wonder if this is what plays a part in my kid's anxiety issues.  Is it related to trichotillomania?  Or the anxiety driven tantrums? 
I don't know.  But I can't change the way our family's dietary restrictions work without hurting us.  So I can only hope that we can continue to reassure, that the interventions we've chosen are helpful, and that as a society we become more supportive of food restrictions for any reason. 
Why would kids with dietary restrictions be more at risk for emotional problems?  To my way of thinking it's understandable when they are required to go to school, but school personnel and their peers don't always 'get' allergies.  When other parents are busy fighting for their children's right to eat peanut butter, the food allergy kid is hearing "you're ruining things for everyone".  When pizza is served to 19 out of 20 kids and the food allergy child gets to grab their own personal lunch from their backpack, they get the message that they aren't as special as the rest of the class.  They have to put up a wall to remind themselves to say no, to be polite, to be different. 
I don't know what the answer is.  But awareness helps.  And hopefully therapists will learn a bit about food allergy; and the difference between medically restricted diets and eating disorders. 

I used to see kids melt down in public.  Full blown screaming tantrums, and parents in various states of disarray, hair in disarray, bags falling out of arms, flailing limbs, red faces. 
I'd shake my head with everyone else.  And tell myself I wasn't judging. 
But I lied. 

I admit this now, to myself, after being 'that mom'.  With the screaming, stomping, "I hate you!  I wish I was never born!  Why don't you love me?" kid.  The one trying to unlock the car door while preventing flailing arms and legs from pummeling any other children (namely the sister who unexpectedly triggered the attack)  The one telling her barely-over-12 year old to get in the **front** seat, and stuffing the breath-holding stiff-as-a-board child into the back. 
I admit it because in between blocking kicks and steering kids through a well-populated area, I glimpsed a sea of faces.  Most carefully averting their eyes, and a few too fascinated by the spectacle to be ashamed at watching.  I remember thinking it wouldn't ever happen to me.  My kids wouldn't...  I'd cut it off early, never give in, never let it start.  In retrospect, while I never really held it against them, I held myself apart from them.  And now I've become that mom.  With that kid. 

The one who ate sprinkles yesterday and can't keep herself under control today. 
I wish I could just pin a sign on her shirt that says "I'm not responsible for my actions if you feed me artificial food colorings"  but I'm not sure anyone would pay attention.  I wish I'd video taped todays performance, if not for FDA hearings on whether or not food dye is evil, then for a dr to help evaluate her...because she's usually an angel for strangers.  I think the adrenaline of 'different' caretakers helps her keep control.  But it's just a theory. 

I don't pretend that eliminating food dyes from her diet would solve the problem.  Even when she is dye free, which is most of the time, she has her moments.  There is definitely something there that lies just outside the realm of norm.  But, artificial colorings exacerbate it.  They tip whatever scale it is inside of her that helps to maintain control and propriety. 

And I don't mean to make excuses for her.  She needs to keep herself from losing control.  We're trying to find all the tools she needs to do it.  I will say she's made progress.  She was still "there" during this tantrum, and didn't have to cry herself to sleep to get out of it.  And honestly...I've never given in to her tantrums.  She's never once earned herself a new toy, an extra cookie, or a second trip around the merry go round.  If her goal is to get me to leave the store, the closest she gets is sitting in the car or on a curb until she's calm and then heads back in.  I'd wondered why she bothered throwing them until I read "The Explosive Child" and started pining after one of those dreaded labels.  Now I try, hard, to take them in stride.  Although, days like today, I'm not sure that's really working.  (She's better...but she's nine.  Shouldn't she be past this?) 

Which reminds me that stress may not be the root of my digestive disorders, but it really doesn't help them any.  Ugh.