Today I got a call from J.T.’s school nurse. She was letting me know that in art class the students were using egg cartons…and that J.T. was choosing not to participate. After the art teacher checked in with the nurse, the nurse tried telling J.T. that the cartons were safe for him to touch and when he still refused she offered to call me, I think expecting me to say it was OK. Which I immediately said it was not. Egg’s are a life threatening allergy for J.T. and our thinking about them is very black and white. Eggs are unsafe. There is no gray area where J.T. has to make decisions about when or why they “might” be safe. He knows they could make him very sick and not to come into contact with them. Someday he will have to make those decisions for himself, but not in first grade.
The nurse was concerned that J.T. would feel left out if he didn’t participate in the project, he was more concerned that he would get sick if he touched the egg cartons. I was concerned that it was happening at all (since it states in his health plan that all project materials are supposed to be allergen free). But the overwhelming emotion that I felt through all of this was pride. My first grader stood up for himself, and not just to his peers but to his adult teachers. He made it clear that he was uncomfortable and that he was not going to participate in an activity that he felt was harmful to his health. He understands his allergies and the risks involved and that is so important. In the end, he didn’t feel left out or different and he didn’t let his allergies get him down. He had a great day and came home to 2 super proud parents!
This summer has absolutely flown by! And while a week ago I was hanging onto the sunshine and warmth for dear life, this week I suddenly feel ready for crisper air, sweaters and soup in the crock-pot. I think it may have a lot to do with the fact that JT had a very succesful first week in first grade and so my fears of him starting in a new school with a new teacher have been relieved and I’m starting to relax…a little bit anyway.
Ready for first grade!
Our school system has been wonderful, but I know that I still have to work hard to advocate for JT. It’s really important for me to start making sure all of our medication and forms are up to date and that the staff is fully aware of any updates or changes to his medical history well before that first day of school. I also have to be sure to educate myself on any changes in school and classroom policies. Being prepared helps me to be able to enjoy sending JT off to start the new year.
Over the summer I was able to get in touch with JT’s new teacher and we chatted about his allergies. I immediately felt like he was in good hands. The first thing that helped was that his teacher taught at his old school last year and so she already knew of JT and his allergies. Second, she is good friends with his teacher from last year and so they were able to discuss, at length, what worked in her classroom and what didn’t work (I’m confident that this info would have been relayed regardless of friendship, but still, I think it was helpful). Third, his new teacher has severe food allergies. Knowing she has food allergies means that she “gets it” on a level that many people do not, it also means she can be a role model to JT as a succesful adult who lives with severe food allergies and that is really important for him (and me) to see. Now, this doesn’t mean that a teacher who does not have food allergies won’t “get it”. JT’s teacher last year was nothing short of amazing and didn’t have food allergies. It just means that I have to do less explaining and quite honestly, less hoping that she understands.
Aside from JT’s teacher, there are other factors that have made me feel confident in this new group of people who are responsible for JT on a daily basis. The first is that his classroom (which includes several children with food allergies) is the closest to the nurses office (where his epi-pen is kept). Also, they will continue to have a peanut free table in the cafeteria. Even though peanut is not JT’s worst allergy, I continue to have him sit at the peanut free table because I feel like that way the lunch room monitors always know where he is. After speaking with the nurse we were reassured that the school would continue to follow JT’s individualized health plan from last year. Some of the accommodations stated in his plan are that children will wash hands after lunch and snack, that JT has his own trash barrel in the cafeteria so that he doesn’t have to touch a barrel that has been contaminated with his allergens and that the we can provide extra snacks to be kept in the classroom just in case something were to come in to contact with JT’s food (for example, a milk spill). In addition, classroom celebrations continue to be non-food based – yay!
I feel like our school system has some great policies in place and they have been willing to work with us to make modifications that will keep JT safe. I wish that every child and family with food allergies had a similar experience but I know that is not the case. If you feel like your school system is not doing all it can for your child’s safety, I would strongly suggest having your child put on a 504 plan. Every child deserves the right to learn in an environment that is safe for them!
JT had his last day of Kindergarten yesterday, and he’ll move on to a new school for first grade. I couldn’t have imagined the roller coaster of emotions it would be. So proud and happy to have him home for the summer, but so sad for him to be leaving such a special place. Last summer, I felt only one thing anticipating the start of the school year, and that was fear. How do you release your child to other people when something as simple as another student’s snack could make him sick, send him to the hospital or worse? How do you trust that they could ever care as much as you do? I was terrified. Really, really, genuinely afraid. Expecting that dreaded phone call would one day come…”He was exposed”, “He’s not well”, “It was an accident”. But, not only did the phone call never come, the fear also eventually subsided. It didn’t take long to realize how special the staff at my son’s school was and that they cared as much as I do. And not just his teacher, but the assistant(s), and the nurse, and the janitor. They all cared. As I sat and wrote out their end-of-the-year “thank you’s”, I sobbed. Yes, they taught my child, and they helped him to make friends and they kept him safe and those things are so, so important. But most important to me is that they CARED, more than I ever thought they would. And I could never thank them enough.
In our school district the students move through five schools before graduating. And after an amazing and succesful year at JT’s current school, it will be time for him to move on. As the parent of a child with medical concerns, all of this switching is extremely nerve-wracking. Just as you get comfortable with one school’s staff and policies, it’s time to change. And it feels like starting over. I remember how emotional I was sending JT to kindergarten but I think I may be more of a mess when he leaves. They have been just wonderful in so many ways.
Fortunately, his next school (grades 1-3) has already anticipated some of the needs of the families with food allergies. They offered an “allergy transition day” for students and their parents about 2 weeks ago. We were able to sit with the nurse and the head of the cafeteria staff. The cafeteria manager explained how lunch works and how student’s allergens are entered into their computer system so that the cafeteria staff is constantly aware of which things a child can and can not eat. She also offered for parents to go into the cooler and freezer to read ingredient labels. JT will always bring lunch from home so we passed on that, but it’s good to know that the option is there if he were to ever outgrow some of his allergies (fingers crossed!). We were able to peek at some of their packaged snacks and it turns out that JT can have some of them, so we could make a note in his lunch account specifying that he is ONLY to eat the pre-packaged (crackers, cookies, etc.). That would be a great option if we were ever to forget lunch or if at some point he just starts feeling left out. Next the nurse explained how the children with allergies are generally grouped together so that those teachers can be extra vigilant in their classrooms and that they will be given a safe place to eat snack within those “peanut safe” classrooms. They will continue the policy of having children wipe up hands after lunch and snack with the allergy parents providing the wipes. That is great for us because we provided all the wipes for JT’s class for this entire school year. We were shown where the epi-pens are kept (centrally located in the nurses office) and we talked about the “peanut free” table at lunch. As parents, we are given the option of having our kids sit there or not. JT will remain at the peanut free table. They wrapped it up with some questions and a tour of the cafeteria and nurses office and we were on our way.
Just offering this program is a great first step and offering it before the end of this school year, rather than the beginning of next year is really helpful. No one wants to go into the school year with lots of unanswered questions. The meeting showed that they were aware of the severity of food allergies and that they would be open to discussions and questions regarding them. I was especially happy to see that parents were able to get into the cafeteria to check out ingredients and that children will continue to wash up after eating, also the nurse made clear that she is available to go over concerns with us. I was disappointed with the phrase “peanut safe” and with the location of the epi-pens. I still after the meeting don’t know what “peanut safe” means exactly. It’s not peanut free, which is an actual thing. I guess it means that the teachers are aware of the allergies and extra vigilant. Does that mean the classrooms are also “dairy safe” and “egg safe”? Perhaps “allergy safe” would be a better phrase? My opinion is that “peanut safe” is just a buzzword to keep parents happy, but it didn’t impress us. As far as the epi-pen location goes, I’m actually ok with it while the children are inside the school, it’s the playground I’m worried about. The playground is not very close to the school and I feel like if JT were to have a reaction on the playground it would be too late by the time their fastest running teacher got his medication to him. I’ll be contacting them about that before the end of the school year to see what can be done.
Overall, I think this meeting was a great idea and I appreciate the timing of it. It was also really great to see some of the other families who have severely food allergic children. It’s great to know that there are other families to look to for support if needed.