Tuesday, February 7, 2012

"Your lips are moving, but all I hear is blah blah BLAH"

Lip service.

Is there anything that drives you crazier when it comes to food allergies?


When my son started school, we heard all the right phrases from school personnel: "safety", "we want him to be totally included", "staff training", "comprehensive plan." My husband and I felt pretty good about things. Until school started, that is.

Within a few weeks, my son came home and reported that his teacher had handed him M&Ms for a math counting exercise. When he said "I can't have these" she said "oh, do they contain milk?" Training blah blah blah

First grade: the start of full days and school birthday parties. Would the parties include brought-from-home foods, we asked? Well, yes, we really can't take away a treat from the other children blah blah blah

We noticed there was a "no nuts" sign on the door of the classroom. Apparently the signs were part of the "comprehensive plan." We pointed out that our son was allergic to more than just nuts. That the sign had no meaning if they were allowing foods in the room without checking ingredients. It's more about general awareness blah blah BLAH

The parties escalated. Every kid's birthday, culture days, peanut-butter bird feeder projects, school ice cream socials, pancake breakfasts, food fundraisers, pizza reward lunches. "What happened to total inclusion," we asked. "How can he really be safe with all this food around him all the time? Bring treats to store in the nurse's freezer and come to the school if you must, but we think we have it under control blah blah BLAH

"But you DON'T have it under control!" we said. "You've just been LUCKY!" There have been several instances where only our child's knowledge or our involvement prevented reactions!" My husband finally quit his job and ran full-time interference at the school.

Lip service.

You see it when you ask the waitress "does this soup have milk in it?" and she answers "definitely not" without even checking in the kitchen.

You see it when you try to show a friend how to use an auto injector and she replies "you don't need to show me - I can figure it out."

You see it when you go to the family party, ask about a dish and your relative says "yeah, we checked it all" and then shouts over her shoulder "you checked all this stuff, Bob, right?" Right. Lip service.

When my son was a toddler, I was given a rare gift, although I didn't know it was a gift at the time. We were at my brother-in-law's house and my son accidentally drank from his cousin's milk-filled sippy cup. The response was instantaneous. Hive. Swelling. Copious vomiting. My brother- and sister-in-law watched this unfold right in front of them, mouths ajar, as my husband and I struggled with the Benedryl. (I know, I know, don't lecture me please about two-system involvement and Epi-Pens...we were clueless back then.)

After that day, my husband's side of the family has NEVER given lip service to my son's food allergies. My sister-in-law committed that day to understanding the situation and safely cooking for him. She saves every label she uses. She walks through every dish with us. She thinks about potential cross-contamination on her pans. She plans her menus with him in mind. She takes it in stride when she makes a mistake.

THANK YOU, Sylvia. From the bottom of my heart.

Because that's where meaningful words come from - the heart. Not just the lips.

8 comments:

  1. You are brave. I know, it takes strength every day to keep our kids safe and few people understand. Thank you for writing about it!

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  2. I drew a blah blah blah food allergy cartoon you will like! http://foodallergyfun.blogspot.com/2012/01/blah-blah-food-allergy-blah-blah.html

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  3. My son's milk reactions sound just like yours when he was a toddler and I don't give epi pens. Benadryl does the job. Why would I stab him and end up in the ER?

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  4. Lacy, what you do is between you and your doctor. My blog is about my experience and choices. However, I do know that some doctors recommend an Epi-Pen for any reaction that involves two body systems, which is why I mentioned it. For reference:

    http://www.epipen.com/professionals/anaphylaxis/diagnosing

    I will warn you that reactions can change as kids age. My son now has breathing difficulties with his reactions now. It sucks to give an Epi and have to go to the ER, but it sucks worse to not be able to breath.

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  5. I have just found your blog. My son is going to be 10 in May and my daughter will be 8 in April and they both have reactions to milk, eggs and peanuts. I appreciate this post so much. The school where my children attend has a great policy about peanuts, but they do nothing with the other allergies. Both of my kids have had several reactions, but thankfully they have not required epi at school. I am definitely anxious their safety as they grow and become more independent. I appreciate hearing your perspective as a mom of a teenager with allergies.

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  6. Thank you Sylvia! From the bottom of my heart, too. I don't know you but I do "know you"! You are the very few friends and family who not only get it but care enough to make us feel included.

    And to the FAB - I am making my way chronologically through your blog, since I just found it last night - I wanna hug you! Thanks for putting into words the last 20 years of my life.

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