The Internet Cult of the Special Needs Mommy

This weekend, I did what I periodically do (and I suggest you do as well): I Googled my name and home town and did my best to clean up public links that included them. It's amazing how quickly things like comments at newspapers can snowball and it's never a good idea for a future employer to think one's entire life consists of funny "Caption This!" contests.

However, in the course of deleting innocuous comments, I ran across one that stopped me cold. Several years back, I had written into Time magazine in response to a (very slanted) article they ran about food allergies and they published my response. The comment itself is long gone from the Time site. However, my name, hometown and a single line from the comment were now part of a support site for moms of diabetic children.

The original comment was, I thought, innocuous. It was about how food allergies are not thought of as a real disease, and how schools protect, for example, diabetic children but don't always extend the same protections for food-allergic children. But man, did the fur fly! You can read it if you like. (But PLEASE don't stir the pot...she'll probably put my name back in just to be spiteful!)

After several emails, the original poster did finally remove my name. I explained (nicely) that I have a sister with Type 1 diabetes and that I was in NO way dissing the severity of the disease. My comparison was made solely regarding the social status of the disease, not the severity.

She did not care at all. In fact, she doubled down in her response, telling me that my experience with my sister was not the same as having a child with the disease. I was clueless and her public raking of me over coals was totally justified.

All of this is like looking through a wormhole. As I mentioned before, I ran a board like that for several years, and yes, people outside the "culture" were regularly taken to the woodshed and trashed. I tried hard to stay about the fray and give people the benefit of the doubt, but I do recall one famous incident where I named and shamed someone (a public figure, but still). Now that Karma was biting my butt, the pain was, well, painful.

I quit running that community for a number of reasons. It's an amazing amount of work, day to day. (My children complained that I loved the chat board more than them.) But, more important, opinions on a chat board always seem to devolve to the most strident and the most conservative. Eventually, people with moderate opinions give up and drop out and the really out-there thought is continually reinforced. I decided that, despite the good of sharing information, the bad (and it was very bad) was actually creating anxiety in people and perhaps even mental illness. I was doing more harm than good.

This blog was born of that realization. I wanted to see if education makes a difference. If I pointed out all these overly-anxious thought patterns, would people see the patterns and want to change? Would they use my own experience as a cautionary tale?

I think it's been a failure.

Yes, a few people have pursued new testing or food challenges as a result of what I post here. And, a few of those have found out their child either no longer has or never had an allergy. That's a huge win, and one of which I'm very proud.

But, for most people, there's just no way to take my experience and transplant it into the consciousness of someone else. As with so many things in life, I think you just have to live it in order to get it. I'm sad that there's apparently no short-cutting the years of anxiety and crazy precautions for most moms...but I've concluded that information not only doesn't help, it often is just more polarizing. The more I talk about anxiety, the more these moms double down on their precautions. I've watched it on chat board after chat board where this blog is discussed.

We need to feel special when our children are young and dealing with food allergies is hard. We need the blue ribbon. We get it from these communities, even if it's at the expense of insular thinking and rampant anxiety (and sometimes dissing others). We're willing to get pulled further and further and further in. It's not ever obvious that gravity has us in its grip until it's too late.

People don't like to be told about this. (It has not escaped my notice that dryer lint has had about the same success building traffic than I have with this blog.) I've become a scold, and who wants to be scolded?

I don't know if I'm totally done, but I definitely need a break. I know a lot of you are interested in FAHF-2, so I'll try to post about that as we go through the challenges in October.

Peace.

What Does It Mean To Be A Good Food Allergy Mother?

As part of the college application process, parents are asked to write a summary of their child's strengths, weaknesses and issues that may have affected their high school performance. The summary is then used by the child's guidance counselor to write a letter of recommendation (one the parent never sees) to the colleges to which the child is applying.

I found myself writing at length about my son's food allergies, including the following:

Other people really don't understand the effect food allergies have on kids, socially and anxiety-wise. My son has had four major reactions that involved breathing difficulties and rescue meds; he's had countless other reactions that did not progress as far, but that made him sick. Coping with the fear of a reaction and learning to make good decisions, cook his own food, and watch out for potential issues (like kissing someone who has eaten peanut butter) has been a major undertaking.

There was more before and after that paragraph: about the clinical trial, about exclusion, anxiety, expectations, maturity. There was a lot. I wrote and wrote and wrote.

And then I took it all back out.

It occurred to me that the high school counselor would likely interpret it, no matter how well written, as overprotectiveness. What exactly is overprotectiveness? I wondered as I looked at the blinking cursor. Would I know if I had the dread disease? Or, is it like racism, where everyone can only see it in others but either don't see it or excuse it in themselves?

And, more important, if my definition and the high school counselor's definition of "appropriately protective" vs. "overprotective" are different, who wins? Clearly, in this situation, what she thinks matters a whole lot more than what I think. I had already had past conversations with this counselor. It was clear that no amount of education was going to change her opinion.Yet her letter will carry enormous weight with these schools.

There is, of course, another way to look at the situation. I could include reams and reams of information about food allergies. I could let my anxiety all hang out. I could emphasize what my son missed out on throughout his school years. I could magnify the bullying incidents. I could complain about the uncaring teaching and support staff. I could rally against a society that teases and marginalizes kids with a medical disorder. I could name the dead kids...quote the test scores...talk about death from food allergy as likely or even certain.

I could be full-out Helicopter Mom in the hopes that the counselor opened her letter to the colleges with:

"In my 20 years of experience as a high school guidance counselor, I have never met a more anxious, over-involved and domineering mother than this student's mother. I am recommending strongly that you accept him at your college as a means of extracting him from this obviously unhealthy home environment."

But that would be incredibly self-centered and stupid. (Wouldn't it?)

So, I am starting the survey over, with the following Rules For Good Mothers of Food-Allergic Children displayed prominently over my monitor:

1. I will not make it all about me. It's about him. If I get gratification from thinking of and portraying myself as a Food Allergy Wondermom who deals with more than other moms, I need to STOMP IT OUT. This is his normal. It needs to be my normal as well. There is no blue ribbon for food allergy mothering. 


2. I will focus on facts, not emotions. My heart is saying HE COULD DIE DIE DIE DON'T LET HIM OUT OF YOUR SIGHT! My head is saying that one child died at college last year from food allergies, out of approximately 100,000 freshmen with food allergies who attended college*. My son literally has a greater chance of dying from a lightning strike (83,000 to 1), presumably even less if we prepare well. 


3. I will not exaggerate! It's so easy to slip into full-out hyperbole. And let's be honest...the more danger there is to our kids, the more justified we can feel about our helicoptering. If death is truly not a possibility, then the protective-vs.-overprotective equation changes dramatically. (That's why so many chat boards emphasize, over and over again, food allergy deaths: because it's the only meaningful excuse for bad parenting behaviors.)
    
4. I will restrict only what I must restrict for these last months before he leaves. I will not confuse more restrictions with more love or care. Avoiding foods, social situations and opportunities because of my own fear is wrong, and really bad parenting. I will deal with my own anxieties so my child can participate in every activity that is not demonstrably dangerous for him.

Such a little list. Such a hard thing to really put in practice. It's amazing how much of my own personal identity (friends, chat boards, activities, this blog) is derived from my son's health issue.

But that's what college is supposed to be about, isn't it? Stepping back and letting the child take control. If I'm honest with myself, I can see that I've made it a lot harder than it had to be, both for me and for him. And isn't that the real definition of a Helicopter Mother?

Guilty as charged.

Follow me on Facebook or Twitter  

*6,000,000 kids with allergies in the U.S. divided by 18 years = 3333,333. 50% college attendance rate ~150,000. I reduced some because kids with allergies skew younger.

Have You Met My Friend: Constant Agitation?

This morning was a pretty typical morning in our household: the kids 20 minutes behind and me sucked into the Siren's call of Facebook when I should be packing lunches. So, the last 5 minutes was a flurry of my son and I both shoving things into a bag.

I grab a dark chocolate Kit Kat (thank you, Peanut Free Planet and Nestle) and shove it in. A moment later, he yanks it back out and mumbles something. I hear "mmrmmmrmmrBLEmme itchy mmrmmr."

"What?" My hand stills as I'm shoving "may contain milk" pretzel crisps into another bag.

"I said that you need to stop packing those in my lunch. They make me itchy. Same with the Junior Mints. There's too much soy in them."

I'm holding the pretzels he's asked for, thinking, what about these? New item we've been trying, have packed it in his lunch before... I go for lecture mode in self-defense.

"You do remember these are 'may contain', right?" I ask.

"Yeah, I remember," he says. What does that mean? Have they been making him itchy too?

"You know you have to be careful with this stuff, because you can get a much bigger dose of milk if they come off the line right after they switch over flavors..."

"I KNOW, Mom," he says, and he's out the door, obviously done with the conversation. I'm left with a very bad taste in my mouth.

Over the last year, we've been playing milk roulette. When my son passed the baked milk challenge a year ago, his doctor told us she thought he could probably tolerate "may contain" foods and that we could start introducing them.

About three years back, we had another formative experience: my son had a reaction to soy. I had done the shopping (always a problem - my husband is the one who has the best handle on brands) and bought an "ice cream" brand that was available in both coconut and soy options, unbeknownst to me. My son ate an entire bowl of the soy stuff before he started to react. The reaction involved wheezing and we did end up in the hospital, but the doctor concluded that his threshold was very high for soy and that we could probably start introducing foods where the soy was listed as one of the last ingredients. Frankly, remembering his childhood reactions to soy, we haven't had the courage to do much of this...other than Junior Mints, with their "soy albumin" as the last ingredient.

At the moment in the kitchen when I stopped like a rabbit, ears up, listening after the itchy, I realized how fragile was my house of cards. What was I doing? How did I get from "try a little" to putting both "may contain" pretzels and dessert in the same lunch? At school! And how long had my kid not been reporting his symptoms?

I want these allergies over. I want them over so much that I can taste it. And now, sitting in the house with the silence all around me, I have to acknowledge that I may have been willfully ignoring those small clues, like my son only eating one stick of the Kit Kat at a time despite loving them.

And yet...there's no way through but through. He almost always had oral symptoms during baked milk dosing, which the doctor told us to push through. Is the itchy mouth from raw milk or micro amounts of soy in the same category?

It's too late. All it took was one comment to pull the whole mental card house down. Who knowingly sends something in their kid's lunch that could kill him?

But what if this is the only way for him to outgrow? What if NOT doing this will result in him going away to college with a threshold that's less than it would have been if we kept pushing through?

Is the FAHF-2 just not working? Oh God - is it placebo after all these pills and months? Or do the oral symptoms simply not matter because the changes are in the gut, not in the mast cells in the mouth? Have I — and his doctor — been mistaking slow-building reactions for tolerance?

Does anyone know anything? 

I don't.


Follow me on Facebook or Twitter