I’ve never felt like I’ve particularly “held it together” but some friends were remarking this weekend that I had to have a cape at home and to that I would say appearances are deceiving. Especially in the blog world where we pick the best picture from several or edit and curate and edit some more. I don’t think that in each specific circumstance what one writes is inauthentic as a blogger, just that our lives can appear outwardly like the best of ourselves.
I love the online food allergy community and the support we all give one another but it makes an already constant presence (food allergies) infuse even more into my daily life. Reading labels has become second nature so it takes up less time but the time I spend online thinking about food allergies remains the same. I guess I’m mentioning this because I have increasingly written about advocacy on this blog and I don’t want it to seem like I know what I’m doing. I’m muddling along and this new phase, kindergarten, is putting me to the test.
On Monday I was invited to my daughter’s school to give a presentation to 25 or so staff members about food allergies. The school nurse introduced me and mentioned Nevada’s epinephrine mandate. Then it was my turn to speak. I was asked how to make other students a part of the team, so to speak, in keeping students safe that have food allergies. I was asked what my daughter thinks of “all of this.” I was asked about airborne allergen risks. And “may contain” warnings.
I speak in public all the time professionally but am finding that food allergies are so intensely personal that my near constant anxiety feeds into even positive advocacy experiences. While I waited for my scheduled presentation I heard my phone chime again and again as it does during the workday with emails from parties, opposing counsel, clients, and more. I knew that I would rather focus on reviewing the FARE action plans (FARE FAAECP August 2013) I had printed off to distribute to my audience but I felt the dread creeping in about the unfinished work and snuck outside to return a phone call. I didn’t want to, and yet I thought it might calm my nerves about my presentation. It didn’t, but as usual once I started I think I did fine.
As I went up to speak, my daughter’s kindergarten teacher smiled encouragingly at me. It meant a lot that she and the school nurse are on the frontline of our support network at school because the fact that their kindness and goodness are directed to my daughter means that I am a part of something kind and good.
As an aside, it makes me wonder if there’s a self serving component to service. Do I help because of someone I aspire to be? Is it all just a part of my tendency to mediate and accommodate at every turn?
I told the audience that my daughter thinks food allergies suck (my word, not hers). I told them that she just wants to be like other children. I told them I have never explicitly told her that one can die from an allergic reaction but that she knows it can affect breathing and that we need to breathe to live so she probably already knows what that means.
I also told them that kids are compassionate. That classmates will want to help keep friends safe and that in my experience I find adults are the resistant ones. I by no means was up there advocating food bans, just how to recognize a reaction and what to do, as well as hidden allergens such as those that remain on surfaces or that hand sanitizer has no effect on. I mentioned the remarks of adults online that were harsh and cruel to kids with food allergies and there was a collective gasp. I usually try to stay positive but I wanted them to know that there was a negative side.
I think I scared them a little with the idea that even adults can suddenly experience an allergic reaction where there was none before. I also spoke about some of the more recent deaths. I just wanted to drive home that safeguards and protective measures are for the benefit of all. That knowing what to do in an emergency will help. And I also spoke of my responsibilities as a parent. How parents I know of attend lunch with their children at school to help monitor them. That I was happy to buy safe snacks for classes, to provide idea lists, to answer their questions.
I also shared the cartoon above and the whole room erupted in laughter. Thank you so much to Tiffany Glass Ferreira for the awesome resource she provides with her insightful work.
Speaking of saying thank you, my sister in law teaches third grade and I asked her how to approach this particular group of teachers. She gave me some wonderful advice that I wanted to share in part here as the school year starts around the country:
I had a parent train me in using her kindergarten daughter’s epi-pen […s]he was very calm and matter-of-fact. She showed me how to use it and we talked about when to use it. She told me that even though there could be side effects it was best to err on the side of injecting vs. not injecting if [the student] started having trouble breathing (and a few other signs [the student] had). It was sort of a “you’ll know it when you see it and don’t hesitate” sort of thing. She told me that overthinking whether or not to inject was a waste of valuable time and it was better to inject and find out it wasn’t necessary than to NOT inject and have [the student] become unconscious, it was better to get the medicine in her and the sooner the better. […]
So l guess just stick to the facts. What are the signs that something’s wrong, how to use the epi properly, and what to do next (call 911, call family). It might also be a good idea to give the staff permission to give the other kids a heads-up or at least let them know what to do if something happens on the playground. […] a general sort of “If something happens or someone falls down on the playground make sure you tell a teacher”. There is always playground supervision, but I know too well (and I’ve done it myself), that when you get 5-6 teachers on duty they tend to drift together to chat instead of keeping an eagle eye on the kids. […]
Their ultimate goal is to keep her safe and happy and learning at school, so I don’t think you’re going to meet much resistance or have anybody be disrespectful or anything. A lot of them are probably parents, too. Make sure you thank them for their time…if you’re doing a whole staff training then they are most likely staying after school or losing prep time of some sort.
Remember that while you have one baby going to school, they have hundreds of babies. See if you can phrase things in a way that suggests setting things up to protect all of the students. There is bound to be at least one other child with food allergies on campus, maybe undiagnosed. Knowing what signs to look for might save another child’s life, too.
Re-reading my sister in law’s advice reminded me that after my presentation I had an audience member come up and tell me she wanted to give me a little hope for the future. She certainly had my attention at this point and she told me about how her children, now young adults, had grown out of multiple food allergies and that it was possible. Connecting with people on that level gives me a boost I need to forge along and continue sharing.
This is my 250th post! I wanted to share a link to my fundraising efforts for the Las Vegas 2013 FARE walk (click here to donate). FARE has been instrumental in so much involving schools in Southern Nevada and around the country. I’ll be at the walk and at the Food Allergy Bloggers Conference that weekend as well.