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To the Teachers and Parents Who Make Living with Celiac Disease a Little Easier for Our Child

To the Teachers and Parents Who Make Living with Celiac Disease a Little Easier for Our Child

It’s been a year since our daughter was diagnosed with celiac disease and it’s hard to believe how far we’ve come as a family. At the beginning it was so daunting—we didn’t even know that celiac disease was an autoimmune disorder and we didn’t understand how complicated the risk of cross-contamination would make cooking and eating out. To top things off, our daughter had signs of another possible autoimmune disease, which is common in people with celiac disease. Our learning curve was steep, but the good news is that we learned and adapted. Even by the first six months, things started to feel more manageable and we could see that we would be able to tackle issues and situations that seemed like obstacles at the beginning (you can find my article for parents who feel overwhelmed by a new celiac diagnosis here).

To most adults it might not sound so hard to eat gluten-free, especially in today’s society. But if you add the fact that with celiac disease you have to ensure that cross-contamination doesn’t occur (e.g., the hot dog can’t touch the bun, everything has to be cooked in separate pots and pans, and anything fried has to be cooked in a dedicated fryer, which is very rare to find), it gets more complicated. On top of that, imagine if you were a kid. You might not fully understand why you have this illness, but you definitely know that you can’t eat like everyone else and you are different at EVERY event where food is involved. Pizza is the foundation of most kids’ events, not to mention cake, cupcakes and cookies, goldfish and pretzels. Yes, there are gluten-free versions of each of these, but what child wants to feel different and have to bring alternative foods to every party or get together?

Over the past year, I have watched my daughter navigate her new celiac diagnosis like a champion. I am so proud of her! She knows how to ask if food is gluten-free, and she knows how to manage it when she is often told that she can’t have what is being served. Sometimes she cries out of frustration when she gets home from a party, but other times she just rolls with it. As parents we constantly plan ahead, and we eventually figure it out. And more than anything, my husband and I have been absolutely in awe with how considerate so many teachers and other parents have been during this year. These people have helped us adapt to our new world, and they have gone above and beyond to ensure that our daughter doesn’t feel left out. In honor of Celiac Awareness Month, the end of the school year, and my daughter’s 1-year anniversary of her diagnosis, I wrote this post with gratitude for all those people who have made life so much easier for us and for our child:

Thanks for letting me talk about the celiac diagnosis and for not minimizing our experience

Any big adjustment or health concern is so all-encompassing, especially when it relates to your children. You are raw at the beginning and it feels like all you can think about. Even when you know things could be much, much worse, it still takes time to adjust. At the beginning my daughter’s health was on my mind constantly. I practically started conversations with strangers at summer parties by talking about the celiac diagnosis and food options. With my own friends, I know I talked about it all the time—about lab results and research, and how to handle upcoming events and situations. I’m so grateful to those friends, teachers and colleagues who let me talk about and process this new change in our lives. I’m also grateful to those people who didn’t minimize things by saying “at least there’s gluten free food everywhere now!” or “at least you know what she has!” Even though this is all true, I appreciate that our friends knew that any health adjustment can be hard, and that sometimes just listening is the most supportive thing you can do.

Thanks for asking questions about celiac disease

We’ve learned that to ensure our daughter’s safety, it’s much better to ask than just assume. We are constantly calling ahead at restaurants and asking questions once we get there. It’s amazing how much ‘fine print’ there is when it comes to food safety and gluten-free foods. For example, while there are many pizza chains that now have gluten-free pizza, if you call or read the fine print you see they can’t guarantee the pizza won’t be cross-contaminated and don’t recommend it for people with celiac. I am so grateful for our teachers and friends who have asked us before planning meals, and have let us know when they want to learn more about celiac disease. Also I’m so appreciative of those who are understanding when we explain what we’ve learned about celiac and the foods and practices we have to avoid. It might seem like overkill to most people, but once you understand the disease you realize what is required to manage it effectively and ensure safety.

Thanks for putting in the extra effort to help our daughter not feel left out

This is the one that makes me cry, every time. The mom I texted to let her know I’d be sending a gluten-free cupcake with my daughter for a birthday party who texted back to say she had already bought her some gluten-free cookies. Or the afterschool teacher who called to say she was planning a big cooking event and wanted to make sure she was using ingredients that our daughter could have. Or the family friends who bought chips for a BBQ that were all gluten-free so we wouldn’t have to worry about my daughter eating the wrong kind. None of this was required, but these gestures meant so much to us.

Thank you to the friends and parents who pull us aside before a get-together to let us know what is safe for our daughter to eat. Thanks to the daycare and school teachers who have asked to meet with us to learn more about celiac, and who have tried to ensure that our daughter doesn’t have to always have a separate snack or treat. Thank you to the friends who make their dishes with gluten-free soy sauce just so we know our daughter can have her favorite food. The list goes on and on…

Thank you ALL for going above and beyond. We would never expect that everyone would do this, but please know that it is so appreciated when you do!

P.S. The picture with this post is from a gluten-free ice cream party my daughter had with a few friends to celebrate how well she has managed her diet over the past year. Sometimes you have to splurge 🙂

If you are a parent of a child with celiac disease and have questions about our experience, please don’t hesitate to send me an email!

 

Faculty Mama: It’s Finally Summer! Now What?

Faculty Mama: It’s Finally Summer! Now What?

This Summer I vow to not be disappointed with my productivity when August arrives. Even before I had kids I remember summers as a faculty member being bittersweet. I usually started the summer with huge expectations, including a list of unrealistic writing goals and projects that I needed to do because I had put them off during the academic year. I was overly optimistic about what I could do, only to realize that summer was pretty short, I was initially exhausted after the Spring semester, and there was no way any human could accomplish all the goals I had laid out for myself. Inevitably the summer would fly by and before I knew it I’d have to start working on my syllabi for Fall, feeling more than slightly dejected.

Now that I have children summers have become even more elusive. Summer is amazing because it  provides a chance to spend more time with the family and attend to some of the personal goals that I can’t get to during the academic year (e.g., working out more regularly, house projects). There are fewer meetings so I can usually get errands out of the way and pick up the kids earlier, but I still have a lot to accomplish at work and am often wondering how I will be productive if I’m at work less? Inevitably I do the math and it seems like I am setting myself up for the familiar conversation with colleagues in Fall: “Summer was nice but I didn’t get as much done as I needed to…”

How can we more realistically enter summer, with delight and clarity about what we want and can do as faculty mamas? How can we better define and prioritize our goals in all aspects of our lives, and experience the satisfaction of making progress towards them?

Here are some strategies for diving into summer this year:

1) First, celebrate summer and the fewer meetings on your calendar. You’ve worked hard all year and you likely need some time to enjoy the greater flexibility in your schedule. For a few days, sleep in, catch up on errands and appointments (I’ll be getting my haircut finally!), or enjoy lunch with a colleague.

2) Get a handle on what you hope to accomplish this summer. Dr. Kerry Ann Rockquemore, Director of the National Center for Faculty Development & Diversity* encourages faculty to identify 3-5 goals, both in “work” and “personal” life, to accomplish during the summer. For example, I have a manuscript I’d like to get out and a book I am editing, as well the personal goal of moving my kids into one bedroom. Of course there will be numerous other smaller things I need to do over the next 2-3 months, but these are the big ones. This year I’ll keep my list to 3, because that feels realistic and I want to maximize my chance to feel the success of accomplishing these goals. If I happen to accomplish more, that will be a bonus.

5) At the beginning of the summer, “swallow the frog.” In the spirit of Mark Twain, early in the summer I’ll tackle the worst task, the frog that I really don’t want to do but that will sit on my shoulder, haunting me until I get it off my list. For some of my colleagues, the frog is their syllabi for Fall. For others, it might be administrative tasks. Either way make sure it’s the task that you know you will continue to put off unless you swallow it early on.

4) Find ways to hold yourself accountable. One of the best things that happened to me last semester was that I finally sorted through 11 years of papers that had accumulated in my office because I was getting new office furniture. My office had become a complete mess, and it wasn’t until I scheduled the date for the new desk to arrive that I finally started working on purging and cleaning. Somehow, we have to find ways to hold ourselves accountable for progress on our goals, especially if they don’t have deadlines. Maybe it’s a reward, or maybe it’s putting a deadline in writing to colleagues. Spend some time finding out what will keep you on track and implement a strategy.

6) Schedule unscheduled time strategically. Even though it feels so wonderful to look at my calendar and see a day with large blocks of free time, I’ve found that I usually don’t use these huge blocks wisely. Sometimes I flounder in the morning deciding what to start with, and then an hour can go by answering emails. I’ve also discovered I am most productive in the morning, and it seems like by 3pm I’m spent and it’s really hard to do writing. This summer I’m going to spend a few minutes at the end of each day deciding what I need to do the next day. Before I leave the office or before I go to bed, I’m going to email myself a list of what has to get done the next day. That way when I get to work I know exactly what I have to start with. I’ll also be sure to schedule the personal projects as well. For example, I may leave work early on a Tuesday to spend one hour at home sorting clothes for the kids’ room before picking them up.

3) Approach summer activities with mindfulness. Dr. Ellen Langer, a leading researcher in mindfulness, reminds us that if we make decisions mindfully, there won’t be room for regrets. This summer I’m going to work on mindfully approaching my tasks, so that I’m aware of why I’m choosing to do a certain task. I’m also going to try and be as present as possible with whatever I’m doing. We all know what it feels like to be feeling bitter about being at work, or feeling guilty about not working when being with the family. This summer I’ll try not to fall into that trap by engaging more purposefully.

8) Finally, don’t forget self-compassion. The path towards all goals will involve obstacles. Life happens in expected and unexpected ways. We may keep the goals small and realistic, and work incredibly hard all summer, and still not accomplish what we had hoped. Practicing self-compassion doesn’t mean we become self-complacent and it doesn’t get us off the hook from our goals; it just reminds us we are human and we should be patient with ourselves. Self-compassion will fuel our productivity and well-being much better than regrets or berating ourselves.

Now let’s go out and enjoy full and productive summers!

 

*NCFDD is an amazing resource for faculty at all stages in their careers. Check here to see if your institution has a membership and to learn more about their services.

This article was originally posted in Hopeful Mama on May 16, 2017. 

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