Today is the first day of school for my youngest. This is the first year he has mixed feelings about going back and seeing his friends and getting back to work. He loves math---we do it over the summer at home--and no I am not a mean mother--HE LIKES MATH! This summer was long division and some double digit multiplication and word problems.
While he may have some trepidation this year.....I have huge stomach flipping, throat catching, anxiety washed body anxiety EVERY year. You see, my little one has a life threatening peanut allergy. And just to set things straight, it does not mean he gets hives and a runny nose. It is not a laugh out loud, silly moment like on Big Bang Theory when Howard ate a peanut filled granola bar to stall Leonard before his surprise, first ever, birthday party.
My son's throat closes, he eyes bulge, he stops breathing, he turns blue. He. Will. Die.
As a parent, I have the responsibility to ensure he is tested annually, that he carries TWO epi pens on his person and is now, at 8, learns how to use them on himself.
|In the emergency room.....where he was laughed at by the nurses.....|
He had a great demonstration recently when we were at a family BBQ and while reminding middle brother how to administer them because I wanted to say hi to everyone instead of standing in the park, he witnessed middle brother actually jam it into his OWN leg (he thought it was the training epi pen I have......sigh..... I didn't jam it in MY leg when I showed you what to do---what would make you jam it in YOUR leg??!!!!)
(Ah yes, that's another story where Spouse comes stomping across the street to the park because my dog, who hates to be parted from me, is howling in despair because I left her with him so I could go pee and then looked out the bathroom window to see my sister-in-law taking my child to the park without his epi pens--GEEZE CAN I JUST PEE AFTER A THREE HOUR ROAD TRIP!!!!----off to the emergency room---and for some reason--the Spouse was mad at ME!!!!.)
As a parent it is my responsibility to fill out copious paperwork from doctors and the school board and it is my responsibility to educate my child.
Every year is a meeting with the teacher to explain Jake's allergy and I bring in an expired epi pen for them to try on an orange--so they can swing the pen and feel the pop of the needle, the kickback that might cause you to pull the needle out (it has to stay in for 10 seconds--which is a lot of Mississippi counting if you try it.) And finally, they can see what it looks like after. How the shield descends to protect anyone from getting jabbed by the used needle.
The teachers are usually very interested and keen to learn. Perhaps that is because I have had a number of run ins with the principal, the school board rep and the superintendent regarding the school's lack of consistent messaging regarding nuts in school---so I have become THAT parent. Oh yes, that last thing you want to face as anyone working in a school system---is an angry mother--who also used to be a teacher.
To give you an example: The parent teacher association at my son's school decided to fundraise by selling chocolates. The company that provides the chocolate has "peanut free" chocolate, which is very progressive. But they also sell chocolate covered almonds----made in a peanut free facility. This again, seems very progressive. However, when they decided to do this particular fundraiser, my son had an anaphylactic allergy to ALL NUTS. As a concerned parent, I called and spoke to the principal who told me that schools were desperately underfunded and chocolate covered almonds were the best sellers. I was livid. My son's safety apparently had a price. These almonds were being brought into the school in violation of the "nut free" directive and were being circulated to children to sell over a three week period. During this time, the boxes of nuts would go home, come back, be sold in the school etc.
I told the principal as long as the nut products were being sold in the school, I would NOT send my son to school. A phone call to the school board trustee, who forwarded my concerns to the superintendent of education sent the principal scurrying. By the end of the day I had had several conversations; including one with the school board trustee, one to a lawyer to see what I could do, one to my doctor who told me she would support not sending him to school and two to the principal who told me she was removing all the almonds from the school and putting them in her trunk. The rest had already been distributed to the students. She then wanted to know if I had called the radio station as they had called her as well. I told her no---I and hadn't--- but it certainly seemed like that might be a good next step--so I put that idea in my back pocket for future consideration.
Since then I have written a letter to the parent advisory committee regarding the issue and requesting they don't use food as a fundraiser (as per the School Board Guidelines which I highlighted and sent them....) and Jake tested again to find he is no longer allergic to almonds---(peanuts will most likely remain a life threatening allergy for his entire life).
Sadly, I have also had to contact the school regarding their request for students to bring in jars of peanut butter for a food drive (the principal's response was---well we just copied the text from the food drive people---I never thought about the mixed message it sends parents or the danger if a jar is broken or opened.....), and last year had to request the school send a mid year reminder about nut products in school when my son came home and told me his classmate had alerted him to a child on the other side of the room eating a peanut butter sandwich.
Ok so all drama aside......I know I can't wrap my kid in bubble wrap. He lives in a world full of peanuts and at some point in the future I will have to worry about some girl eating a Snickers and then kissing my kid. BUT--the School Board has guidelines and I am asking them to follow them. Each of us has a role to play in keeping kids safe. I have my child tested (a process that leaves him bloody and screaming for 30 minutes because of the 30 or so cuts on his back ---and following pain and swelling from those things he is allergic to), I ensure he has two epi pens on him at all time (which causes awkward moments with other kids, but allows him to talk about his allergy and educate others. I think his classmates are probably more vigilant than the staff.....). I educate my child on the risks and how to use his epi pens and I fill out all the paperwork required by the school. I explain to well meaning parents that my son has this allergy and most times they respond by inviting me along and going over the food that will be served. Often they mean well but I bring along a cupcake for my son and we review the goody bag together (bulk candy purchases are risky as there are nut products throughout the store and no guarantee about peanut free. Just because you can't see peanuts on donuts or candy or cookies doesn't mean that the item didn't come in contact with nuts. My son often has to do without or watch others eat because we just can't be sure.) Some parents are overwhelmed by the idea of epi pens and retract their offer for a play date at their house. It happens. We try to work around it and have kids come here.
The principal and teachers have responsibilities too--and while no one can check every lunch bag or backpack, all I am asking is that they follow the guidelines set out by the Board (most of the teachers have never seen them.....so I give them a copy that I found on the Internet that was supposed to be in a restricted area hidden from the public--not sure WHY....but....) and most important---that they do not increase the risk of anaphylactic reactions through well intentioned but poorly thought out fundraising ideas.
The school is quick to talk about stranger danger---lock down procedures and restricted access to the students. They send home notes about bus safety and child drop off. We are all interested in keeping children safe at school. It is the first priority of any school. So let's throw this safety net over kids with anaphylaxis as well. We know what asthma is---kids suffer from it every day. We try to reduce the risk of them having asthma attacks and kids like this often carry puffers. This is essential the same thing but doesn't seem to come to light until a child dies.
My family doctor lives close to the elementary school her children attended. One morning she received a frantic call from the school because there was a child in the office who could not breath due to an allergic reaction to something she ate. My doctor arrived in time to perform an emergency tracheotomy and saved the child. This was a happy ending! She also can tell you a story where a child in that school on a field trip touched a surface that had come into contact with peanuts and she died in the restaurant.
So first day of school jitters? I have every day of school jitters---less so now but still there. I worry that if I drop my vigilance, something will happen. It is the foreboding joy all over. From what I have read, death due to anaphylactic shock occurs most often in teenagers so what will that look like? Apparently, it is not cool to carry your epi pens with you when you are a teen---so cool wins over life? Wow.......
When I talk about Work in Progress....this one will be there for my entire life. My job is to educate my son...send him out into the world...and hope he makes good choices. That is all I can do....(the perfectionista in me is still sitting with the bubble wrap in her hands just so you know. )