It is a busy time of year for us - sale signs adorn store entryways, deal flyers stuff our mailboxes, and the Target ads get funnier and funnier. Maddy’s birthday usually marks for us a silent countdown until those dreaded words are uttered in our house… "almost time to go back to school.” I don’t know who says the words first, certainly never me, though I may be the one who begins the lists in my head. In the home of those suffering from food allergy, back to school does not only mean an uptick in the good ol’ budget due to extra pudding packs, lunch meat, and Ziploc bags. Unfortunately, to parents of children with food allergies, back to school is a time of high apprehension and concern, no matter how many times you’ve been there, done that.
|Peanut desensitization holds many new promises!|
Each day, our baby leaves our arms and is welcomed into those of the cold building called school where every child is supposed to feel belonging and welcome. I must trust they will take care of her for the day – feeding her snacks and lunch; wholeheartedly I need to have faith in a system that tells me that if an emergency occurs they will take the same care I would. Every day. Since the beginning of our desensitization journey, this thought has loomed. It came up at almost each conversation with Dr. Mayer and often with others, obviously it worried me. School. How would desensitization affect Maddy at school? Better yet, how much more was I going to have to worry about her being at school than I already worry about her with just a regular ol’ peanut allergy? The truth for food allergy families is that it is hard work. It is hard work to make sure your child feels safe, healthy, and happy.
If you have a child with a disability, going back to school means reiterating your situation again and again... and again. It means constant communication and being proactive with any and everybody that will listen, come in contact with your child or anything your child might touch. It is meetings with school nurses, teachers, and parents. It means 504 meetings, accommodations, and explanations. My checklist does not consist of just pencils, markers & crayons, but food allergy action plans, doctor’s signatures, and epi-pens. It asks questions like, “Who on your staff has been trained with an epi-pen and understand what anaphylaxis looks like?” and “Does your school have an epi-pen in the building, it's own prescription?” and also “Who will carry her epi-pen when there is a field trip?” even as far as “What type of sanitizing product do you use and what will you use to clean the tables?” Questions that make me nervous, squeamish, and teary-eyed, but necessary nonetheless. Interestingly, this is not a checklist that was handed out at Kindergarten round-up, Open House, or even at our first 504. This checklist is one made up along the way, as I’ve learned, listened to others, and experienced the hard way. This checklist is ever changing and growing.
|1st day of kindergarten.|
We had always had great experiences with Madeline and managing her peanut allergy for a number of years even. She didn’t attend daycare, we had grandparents and a family friend that helped with that. We attended a cooperative preschool where I was tremendously involved on the executive board and the school opted to go entirely nut free for Madeline and another student with a tree nut allergy. We were involved in the community. We didn’t have just great luck, but had great love for these people, our bubble. That is until our bubble needed to become just a little bigger.
|Excited for school!|
In kindergarten, Maddy was in a peanut/tree nut free half-day classroom. Since she wasn’t eating lunch there, and the teacher was a parent of a child with nut allergies, I felt comfortable with policies she had put in place – no peanut/nut items for snacks, no bakery items for birthdays and if any of these came in they were not to be used. Sounded good. I spoke to the teacher well in advance and she came recommended. Getting better! We went in at open house, spoke even more, I donated wipes, extra snacks, talked to the aide about her allergy, about the cancer situation at home. All was great!
Wrong! Slowly, the truth started to come out. Policies weren’t being followed. “Just in case’ snacks quickly ran out, which told me Maddy wasn’t comfortable with what was being served or her teacher knew she shouldn’t have what the parents provided. Parents weren’t being educated about how to read labels, although the teacher sent weekly newsletters about classroom events like “Lucky the Leprechaun,” Reading Buddies, or Quotes of the Week home. The teacher wasn’t holding up her end of the deal and I was certain Maddy wasn’t letting us in on the truth about her feelings about it all just yet. She loved her teacher and didn't want to say anything bad.
Finally, Maddy told us in tears that a substitute teacher told her she had to eat the snack provided or not have a snack at all, I finally snapped like the salty pretzels being served that day. The pretzels were bagged in separate Ziplocs with no ingredients provided – again, against the initial policy – not only do we not know what could be in the pretzels that could make Maddy or the other peanut/tree nut child react, but what cross contaminants could be lurking on the hands or counter of the person’s hands that bagged those pretzels? Yuck! So, I walked in prepared to calmly discuss this with her. I also knew that this wasn’t the first time the snack had been okay’d against the policy this teacher had set forth. She needed to figure something out here. Policy wasn’t being followed, Maddy felt terrible… she’d see the problem. Wrong again! In my emotional state, Jason on chemo, my baby being mistreated & just starting kindergarten, and all this while I was working full time - I was pretty well a wreck.
|The girls at the office all getting their dose near the same time.|
Her reaction was not what I expected. Rather than apologize, she went on the defensive, pulled Maddy in, asked Maddy what she should have done. Even at five years old, my daughter knew what to do and she did the right thing. She had asked for a different snack. This just made me cry (like I said, I was not in my top emotional state). This teacher was on a a power trip. Rather than do the right thing, she chose to mess with the wrong mama! It was on!
The rest of the year only went downhill. At one point I learned that Maddy and the other student with food allergies had been asked to leave the room so the other kids could have birthday treats from a bakery. There was even one celebration when the children were a part of a celebration where two very famous letters of the alphabet get married (I’ll give a clue… you very rarely see them apart, like in the words queen, quill, and quart). Everyone was invited – parents were told at the beginning of the year, children were given roles in the wedding, and a real wedding cake was ordered. The kids were excited. Maddy talked about that cake and how she hoped it was okay for her. Not one time did the teacher contact me in advance about what I could to help in preparing Maddy, or to help make a cake, find a cake, or help at all. Mind you, I was a helper. I did many things, donated, provided extras for other students. The wedding cake was not okay for Maddy to eat. Let me repeat. The wedding cake was not okay for Maddy to eat. It was the first thing we did when we arrived – look at that cake. By that time in the year, the teacher and the aide in the classroom were avoiding us, it was that bad. They knew. They knew they did not do right by my daughter. It was a sad state of affairs really.
Even as I write this I am fighting back tears. I am a mother and a teacher. It breaks my heart to think that my daughter was treated like a second class citizen in a classroom because of her allergy, a disability, something she has no control over, never asked for, and for even a split second was made to feel unhappy because she couldn’t eat a cupcake. That is exactly what happened. She told us that it made her sad that she couldn’t have the same snack as everyone else. My back to school list really includes a wish, really. I bet you can imagine what it is.
|Just waiting for the day when peanuts aren't an issue at all!|
Luckily, we are past that kindergarten year, and have moved on to a school and a plan with a much more responsive system in place. I thought about this as Dr. Mayer, Nurse Amy and Nurse Lety, worked with Maddy this time around. She increased her dose with very little problems - a mild tummy ache, but nothing serious and no hives this time – amazing!!! As they handed me the food allergy action plan (which Dr. Mayer said next year we will not need – seriously?!?!?), I still prepped myself to educate, advocate, and explain, explain, explain! As parents, no matter what the situation, no matter how great the school, the educator, or administrator, we will always be our child’s first line of defense. Always.