Thank you to The Goldfish and Lady Bracknell for allowing me to participate in Blogging Against Disablism Day. Thank you to Katherine's School District and the Commonwealth of Pennsylvania for classifying her as disabled so that I could participate.
Conversation I:
[Whispered]"Is she still...you know?"
"I'm sorry?"
[Eye roll, head jerk directed at my daughter, whisper] "Is she still...allergic to dairy?"
[Normal tone] "Yep, Katherine is still allergic to dairy."
[Looking horrified at me for speaking so loudly with K. in the room] "Do they think she'll grow out of it?"
[Louder] "No one really knows."
[Head shake, whisper] "That must be so hard for you."
Conversation II:
"No, Katherine can't eat that baked good/cracker/ice cream/pizza. We brought some of these snacks for her instead."
[Sympathetic head tilt] "This must be so hard for you, Sarah. [Adult-speaking-to-child squat] Katherine, I'm so sorry you can't have these delicious foods. You are so good to eat what you brought."
I don't want Katherine to think that her food allergy is something that needs to be spoken about in whispers or is something for just Mama to worry about. Her allergy is a fact of life, and she needs to know how to manage it for those times when I cannot be there. Also, while I am proud of her five-year-old self and how well she handles being in situations where there is no safe food for her, I don't think she needs to be treated as if she's making some big sacrifice. She is learning not to eat foods that could kill her. That does not deserve pity; it deserves admiration, respect, and support. As for me, keeping my daughter safe and healthy is not a chore; it is a privilege. I'm so glad this smart, strong girl is ours to care for.
I don't quite know where the next year will take us, what we will do if Katherine's school refuses to let us keep her EpiPen and Benadryl in the classroom. I don't quite know how I feel about allergen-free lunchroom tables (Safety or segregation? Or both?). I want her to be safe, and I want her to experience everything at school. I hope those wishes aren't mutually exclusive.
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This entry speaks VOLUMES to me! My daughter was just diagnosed with celiac disease (an autoimmune disorder caused by an allergy to wheat, oats, rye, barley and all derivatives of such.) It's been a huge change and I worry about when she "socializes" but we'll get through it!
ReplyDeleteWhat a great post! When you said, "...keeping my daughter safe and healthy is not a chore, it's a privelege..." I thought "yes!" Because, really, isn't that how we all feel, whether our child has challenges or not? Why would someone assume it would be anythig other than?
ReplyDeleteIC - Thanks for stopping by! (I love your name.) The socialization thing is so weird. Of course safety comes first, but what are the best ways to handle it so the children don't feel ostracized?
ReplyDeleteI hope you are able to find lots of resources to help your family through the dietary changes. Have you been to Glutenfreegirl.blogspot.com? I know being allergic to gluten and having celiac disease are not the same thing, but she has a lot of great celiac resources and links on her site. I'd be interested to hear about your progress.
TFM - Thanks! I *hope* that's how we all feel. Speaking of, I feel the same way about Eli, of course. He's been getting short shrift on the blog lately. The other day, I said, "I love you," and he looked soulfully into my eyes, patted my face, and said, "Cup."
At our school, the kids all eat together--which I LOVE. My child is extremely social, so it would just kill her to be separated from all the happenings.
ReplyDeleteParents volunteer for lunch duty at the school. Between each shift of kids, we have a special solution we spray on the tables and seats to clean, before the next group of kids come in.
Pictures of all the children with allergies, and the food items they are allergic to are on the cafeteria bulletin board with the class seating charts. (By the way, this same information is at the school nurse's office and the children's classrooms. Medicine is kept in the nurse's office, unless there is special urgency the child needs to have it in the classroom. I think we can even get permission for the older child to carry the medicine themselves). Paper placemats are placed at the end of the tables for the children with food allergies.
Also, for birthdays, where I normally would cringe, children are not allowed to bring any food to the classroom. They can bring stickers, pencils or other little items to share with the class. Some kids will bring in permanent marker and big t-shirts into class so all the children in the class can sign their t-shirt.
And for class parties or whatnot, where there will be food involved, the school nurse gets to inspect the list of ingredients to make sure its safe for the food allergic child. Dairy does get overlooked at times, but that's also where the parent comes in for a doublecheck.
My child grills adults back, makes them inspect ingredient labels, and will tell them she doesn't want to eat something, or that she is allergic to something. Adults freak out when they see the esteem and confidence in a food allergic child.
You're doing a great job instilling the confidence and esteem in your child. Adults can be extremely insensitive. I know it is incredibly hard. Just scream out loud, painful, heartbreaking agony.
Your daughter will learn from your reactions to these clueless adults that everything is cool, she is supported, loved, admired, and it's okay she can't eat something. Because ultimately, it's ALL her choice. She is in control of how she feels.
Hipwritermama - You are one of the bestest commenters ever. So positive and supportive. I wish K. could go to your kids' school! Those are all great ideas that I would love to see our district implement. It's great to hear about what other families and schools do to keep everyone safe.
ReplyDeleteThank you for an excellent post.
ReplyDeleteIn my case, it is not a child but my wife who has been found to be coeliac (celiac in the USA) and tolerant only of very small amounts of dairy. (Still working on that, think that sheep and goat may be OK).
As the cook in the household, and having just perfected Viennoise baking, the gluten exclusion came as a bit of a shock to me. However, it is NOT a chore. Re-learning everything is good for me and can only make me a better cook. Presenting my wife with gluten-free meals (I very rarely used dairy anyway, so it doesn't really count here) which she cannot only eat but actually enjoys is a positive pleasure.
I am trying to share what I learn through my Life Without Gluten blog posts.
One day, we will get the message across.
Thanks, Smiffy! I'll have to come check out your recipes.
ReplyDelete