Sunday, September 16, 2012

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.



  1. This post makes me sad. As the mom of a now school-aged child who's anaphylactic to peanuts, I've loved hearing your perspective. It's easy to get the over-cautious, hyperdiligent perspective on boards and Facebook. Getting a more balanced perspective from someone who lives it is rare and, at least for me, is greatly appreciated.

    Oftentimes the most outspoken are the most crazy, so I wouldn't judge your effectiveness from others' comments on the internet! I have made major decisions for my son at school based on other food allergy moms' experiences and the education they provided me. And these decisions were far less restrictive than I probably would have made otherwise had I not had moms like you from which to learn.

  2. Thank you for so bravely taking the punches. I only recently discovered your blog, but it's been a breath of fresh air. FINALLY a FA Mom who's views on management are so close to mine. Please keep on going ... my son is about 5 years behind yours, and it's nice to get a glimpse into how you've paved the trail...

  3. I wish you wouldn't stop. Your blog has been a huge help to me. After year one of an egg allergy, year two of Celiac diagnosis, and in year three a massive reaction to walnuts, I got to that horrible icky lack-of-perspective place. There is so much content about precautions and worry and doing more to manage the situation. Reading your balanced views has been so refreshing. I hope you reconsider. There isn't enough of you out there.

  4. I don't think you realize how many of us are out there faithfully reading every post but just not commenting. Your posts have really changed my life. Please know that you are touching people in a very real way. I understand if you need to take a break (you clearly put a lot of time and effort into each post), but please, please come back to us soon. And I definitely want to hear how the trial is going!

  5. I understand. Oh BOY do I ever understand about this...

    (As you know, since-- yeah. :ahem:)

    Pluralism is exhausting-- but so necessary. Since nobody's condition (medical or metaphysical) is identical, no one set of experiences can entirely inform someone else who is starting out.

    FWIW, you're someone that I'd have been happy to know without food allergies ever crossing either of our paths. I mean that.

    Some of the people that I have met as a result of living in the undertow of the wormhole have been real gems. They've seen me at my worst and they still speak to me (mostly). That's pretty much got to count for something, anyway.

    Ironic, isn't it, that you and I share the experience of life with Type I diabetes. It may not be coincidence that we've both chosen to ask ourselves VERY hard questions about our advocacy and parenting of the disability (as distinct from parenting in the standard sense, I mean). Seeing a special-needs child parented to adulthood gives one a unique perspective on what to do-- and what NOT to do.

    I do consider it deeply ironic that you were raked over the coals for that remark. :sigh::

    While your management and mine may differ... I think that one thing is absolutely alike between us: we're willing to take our assumptions and fears out and examine them closely and critically on a regular basis.

    (See my comment about the "what-if" game on your previous post.)

    I think that all parents should do that. It's not easy or comfortable, but it leads to a MUCH better place in terms of emotional health.

    I still feel fear for my child. But I've learned that feeling it doesn't mean acting upon it, and that I can and SHOULD tell that little voice to shut the **** up when it urges me to snatch her up and lock her away from the big bad world.

    My teen is a huge fan of your blog. I thought you would like to know that, and probably find it amusing since you've effectively known her through me since she was a tiny tot. :)

    It has saddened me, too, to note recently that there doesn't seem to be any detour around the school of crazy and reactionary. Maybe it's a necessary phase in order to get where we both seem to have wound up.

    Peace, my friend. :)

  6. I guess all my crazy rambling comments haven't convinced you that you are really doing phenomenal service here. It is true that there's a certain bit of experience that one has to have before you can rise above it. I call it "being one with the crazy," and I spent the majority of my daughter's life there, and am so grateful for the friends and family who stuck by me and let me be there while I needed to be there. But now I'm coming out of it, and you are the one who is supporting that. Every once in a while I have questions that require a visit to a FA support board, or feel the need participate in group conversations, and it's a slippery slope and your posts always boost me back up. Every once in a while I start to drift down the self-pity path or drift into knee jerk reactions, and you are the only person whose virtual voice I can stand to hear playing devil's advocate and making me question my motives. I can't express how much your blog means to me. You make such a difference for me and my daughter. I feel like a sane person now, and I credit you with much of that, you've got me asking the right questions ("does she really need to avoid shea butter?" the answer was no and she is happier for having that bit of flexibility in her life now), you've got me examining my motives, you've got me thinking more clearly about the life I am building for my daughter. Enough from me. You get the point. I appreciate all that you've done here. It was the right thing to do and I will be always be interested in what you have to say.

  7. I like your blog, too. Have a break, but come back!

  8. Thank you all so much for the support. It means a lot. Connie, I really laughed when I say "thank you for taking the punches" because that is exactly what this month has felt like. I definitely need to get my wind back.

    And "unknown"...the irony of the diabetes slam did not escape me either. But really...I was just floored to hear your daughter likes this column. That's amazing -- both that she's OLD enough to read it and that it resonates with her. Thank you.

    I'm sure I will come back to writing once the bruising in my psychic solar plexus is better. :)

  9. NO!!! I haven't read the previous comments so I apologize if I am repeating, but here are my thoughts. You have helped me tremendously. I think that what you are seeing on the chat board discussions are the same people you referred to in your post. Those on the ends of the spectrum. Those of us in the middle who DID walk around needing a blue ribbon until you pointed out that we don't need one are just more silent. I am here. I am reading. I am learning. And I am reshaping the way I act and think. Two months ago I met with my PA son's kindergarten teacher and head of school to ask for certain accommodations. That meeting went way differently than I had originally planned because I found your blog between asking for the meeting and holding it. I only asked for what he NEEDED, not what I needed to make me feel safe (which let's face it, I never will until he's not allergic). As a consequence of my reasonable attitude I have been asked to host a teacher inservice and parent education meeting on food allergies at the school in November. You have inspired me to make an allergist appointment to discuss food challenges to start putting some of his unknowns into the "yes" or "no" category. I'll be honest. It scares the crap out of me, but you've empowered me to take that step. JUST TODAY I posted your "Hello Muddah" post (a song I have now memorized because I listened to it and laughed and cried daily last year when we hit obstacle after obstacle at school) to the Facebook wall of a friend whose son is also PA. My husband and I have laughed and laughed over your post about stalking your son in Panera because that. is. SO. me. I am so sorry that I haven't taken the time to thank you. I know that the time that goes into researching and writing a blog is extensive and you certainly don't owe it to us. But your efforts have made a huge difference in my family's life. I DO appreciate it. You ARE making a difference. It's just that the difference is being made to the silent reasonable middle. PLEASE DON'T GO!!

  10. I'm 32 and was born with anaphylaxis to peanuts/tofu and severely allergic to legumes and soy/soy derivatives. Even I absolutely visit your blogs because you bring up major issues and psychological repercussions that people with food-allergies have to face every day. There are so many changes that still need to be done with laws and awareness for food-allergies. I have a few ideas, but without my blog and website (, those ideas would have no platform for getting the word out. You have the same ability and gift with your wise words of experience. Don't let others stop you or make you feel like your words mean nothing. They have not lived your life, as you said. Please do NOT stop writing. And as for the solar plexus, there are tons of good healing meditations on YouTube that might help as well =)Thank you for all that you do and all that you still will....

  11. I think you should stop googling your name and hometown and keep on with your blog writing.

    I've truly appreciated the way you "tell it like it is" and I hope you continue to do so. Your posts are well thought out and very knowledgeable. I'm also jealous of your awesome pictures. I hope to see you back soon and definitely keep us posted on FAHF-2.

  12. I just found your blog. I am have an 18 month old who is allergic to milk/egg/peanut. I have found more helpful information on your site in 10 minutes, then in all the other "online" information. You give me hope. You make me laugh. You inspire me not to be afraid. Thank you! Please keep writing.

  13. Please don't stop! Please, I just found your blog and I've forwarded it to so many people in the last few days. I am on a constant troll for good food allergy blogs and this is by far the best. I read your entire blog from start to end last night.
    You say what I wish I said, what I will say in response. My daughter is only 3, and it's clear there are many complex situations ahead.
    This is really good writing too!

  14. I just found your blog today after looking (clearly not hard enough!) for a source of information from "been there, done that" allergy moms who have found the middle ground that I try to keep firmly under my feet. My selfish hope is that you will return to food allergy blogging soon! If not, then I suppose that I will just have to content myself with your former entries. Thank you for sharing all of the insights that you have thus far!


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