As Katherine, Eli, and I sat on an old mattress in the basement last night, watching tornado warnings on TV and calling Scott to make sure he was safe at work, I was thinking: "This is a pain. I hope we all stay safe. When will Scott be home? How am I going to get them back to sleep? Please keep us safe."
Safe. We all want to keep our children safe. Sadly, we cannot. There are things we can't control. So we pray. We kiss our kids at night. We do what we can.
Katherine's kindergarten registration packet arrived at our house a few weeks ago, bringing with it all my worries and fears about her safety in public school. She wants to go, we want her to go, but the bottom line is that I won't send her if a few things don't change.
What things? I'm so glad I imagined you asked!
According to the superintendent's administrative assistant, our school district has no formal policies regarding food allergic children. I found this out when I called the superintendent's office and asked. As far as I can tell, this means that every family of an allergic child gets to start from square one with the administration. Since there are no policies specific to allergic children, I have had to brush up on Section 504 of federal law and Chapter 15 of Pennsylvania law. (Thanks to my friend Andrea, who has a son with Asperger's syndrome and who knows a lot about this) To paraphrase, poorly, Katherine's allergy is considered a disability. If her doctor writes a letter or prescription stating her medical needs, by law the school district needs to find a way to accommodate that. I did not want to walk in the door of the kindergarten building with my legal guns blazing, but I did want to know what I was talking about.
The superintendent had the elementary school principal call me back. Our conversation centered on snacks, and she told me this: "Kindergartners arrive at school with snacks sent by their parents, but if the teacher deems the snack 'unhealthy,' the teacher may replace it with a 'healthy' food item of her choice. You know, like if a kid brings in junk food, the teacher will give her peanut butter and cheese crackers instead."
............I'm sorry, did you just say peanut butter (which is another issue) and cheese crackers?!?!?!? After I just spent 10 minutes explaining that my daughter can't be near dairy?
Please bear in mind that I will continue to do what I always do, namely provide Katherine's teacher with a stash of graham crackers, fruit snacks, etc. I'm not asking anyone else to do so, I just want to guarantee that those are the foods she will be given should I ever send an "unhealthy" snack.
Speaking of snacks I provide, I'm prepared to go zero tolerance on birthday parties and give Katherine's teacher a stash of dairy-free cupcakes and other treats to use in those situations. Just please tell me that those are what will be used.
I am also concerned about crafts and projects. Counting M&Ms during math time and using Goldfish crackers to make a picture of the ocean are not viable activities for my daughter. So let's agree that her teacher will let me know about these projects so I can provide an alternative.
I left messages for the school nurse and for the school nutritionist. The school nutritionist was very nice and very helpful, however, her work concerns the cafeterias, not the classrooms, and Katherine will not be in a cafeteria until next year. At that time, the nutritionist said she would be happy to make a cafeteria safety plan with us, she said that I am welcome to the nutritional information in her office at any time, and she even volunteered to sit in on this year's meeting to make sure we're all on the same page. I wanted to hug her.
Next came the school nurse. My number one concern is that they do not want to keep Katherine's medications in her classroom. We are talking about a lifesaving first aid device to be used in a medical emergency. I am not asking that her teacher dispense her daily dose of vitamins. (Although, while we're at it, the teachers can't give out band-aids, but they can dispense fluoride to students?) The point I have made to everyone who will listen is that we want her to experience public school, but it is not worth her life. There is one (1) school nurse for the entire school district. A district that contains five (5) separate school buildings. ALL MEDICATIONS are kept in the nurse's locked office. Nurse, to me: "I can be at the kindergarten building in five (5) minutes. Unless there's a train." (Train tracks run through our town.) Me, to Nurse: "She could be dead by then." The nurse told me about the Chapter 15 agreement, too, and told me that Katherine's doctor needed to be specific about the amount of time between a contact with an allergen and the need for medicine.
Katherine has an amazing understanding of her allergy. She is very, very careful. But mistakes happen. It is hard for a five-year-old to understand that some pretzels are safe and some are not, some crackers are safe and some are not. It is even harder for her fellow students to understand. Medication needs to be available in the classroom in case of an accident.
I have given the doctor's written directions ("Significant milk allergy. Patient needs immediate proximity of Benadryl/Epi-Pen because of anaphylaxis.") to the school nurse, and she and the principal are going to meet with me and with Katherine's teacher in August to compose the Chapter 15 Agreement. (We won't know who her teacher is until then.) I hope it goes well, otherwise I'll be spending August learning about homeschooling.
Also, several state senators and representatives are trying to pass laws enabling students to self-carry medication. I hope these laws are enacted soon.
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This is all so scary. I think the scariest part is that even people with excellent intentions can slip up. Like, the teacher could totally understand about the milk allergy, and even be really good about remembering it every single snack time, but then not think of it at math time when bringing out the M&Ms for the counting project. It seriously gives me a chokey throat feeling of panic, and so I don't even like to think of how it must feel to you.
ReplyDeleteI'm back for more. I was getting the twins ready for their naps, and I was just STEWING over the school giving you a hard time about an Epipen in the classroom. We're not talking about an antibiotic that needs to be given in the same 2-hour time window each day and can easily be kept with the nurse, an Epipen is an emergency life-saving device. Do they make even the asthmatic children wait 5 minutes (if there's no train) for a rescue inhaler?
ReplyDeleteAnd that you would have to do all this research on your own, just to get grudging, resistent compliance from the school, which should have a system totally in place for things like this. You'd think they wouldn't have to go through it with every single student, either.
URG! Sorry, I'm just mad on your behalf. It seems so clear what's in everyone's best interests here, so it makes me feel a little crazy that you have to fight for even the minimum acceptable situation.
Yay, a third comment because I can't proofread! I meant, "You'd think they wouldn't WANT to have to go through it with every single student, either." --The Comment Section Hog
ReplyDeleteSwistle,
ReplyDeleteYou can hog the comment section anytime. Thank you so much for taking the time to write so eloquently. I do feel angry and frustrated and scared, but I don't want to alienate K's teachers, administrators, and parents of her classmates. Not every person without an allergic child is as understanding as you. Allergic Girl has a post up quoting a Child Magazine article about parents encouraging their non-allergic children to disregard school rules about allergens like peanut butter. Really scary. I don't know how to make a link in the comment section, so: http://allergicgirl.blogspot.com/2007/04/mean-grown-ups.html
As for the hypothetical asthmatic child, I believe he, too, has to wait for the nurse. The rules seem to be to protect the teachers rather than the students.
Thank you again.
Crap.
ReplyDeleteallergicgirl.blogspot.com/2007/04/mean-grown-ups.html
This comment has been removed by the author.
ReplyDeleteyay for you for such a great post! great job... and keep us updated, please!
ReplyDeleteWhat do you mean they won't keep the Benadryl and Epipen in the same building as your child? Even though you're new to the school, you need to find out names of other parents of food allergic children in the school so you can pick their brains and perhaps work together to educate these educators.
ReplyDeleteI'm not sure if you already did this, but, I Googled federal food allergy policies in schools and found some interesting links that may help you. If you Google this, you'll also find different state and school policies that you can provide to the school:
http://www.foodallergyinitiative.org/section_home.cfm?section_id=8
http://www.foodallergy.org/school/SchoolGuidelines.pdf
http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/dc/cen/allr/alert01282003.jsp
Hope this helps. I am sick thinking about this.
I am so sorry to hear about the situation with your daughter's public school. My son does not start Kindergarten for another three years so we've got some time before we cross that bridge. My heart goes out to you. You bring up a good point too about how to protect your child without alienating her teachers and school administrators. One of my projects has been developing a newsletter that goes out to educators regarding food allergies. I hope that providing information from a "third party" will help moms like you (and me, eventually) so that we don't have to sound like the lone voices in the wilderness. I am encouraged by the fact that there have been quite a few school administrators that have subscribed. I think they are really hungry for information.
ReplyDeleteIf you are looking for some material to pass along to your school administrators, feel free to take them off our Downloads page (www.checkmytag.com/downloads.html) . Also, I added a post on the Community page about a school district in Georgia that has an amazing food allergy policy. They actually stock each school with auto-injectors and specifically say that they have to be stored in an accessible location! Perhaps this will give you some added ammunition. Good luck! Please keep us posted.
Thanks, everyone. I will definitely keep writing about this.
ReplyDeleteHipwritermama - The medicine would be kept in the kindergarten building, but it would be in the nurse's locked office, that only the nurse has access to. I have said that if the medicine isn't kept in K's classroom, she will not be attending public school. Thank you for the links. I have looked at some of them but not all.
Checkmytag - I will be right over to look at your site. Thanks for stopping by and offering support and information.
Wow. That is so unbelievable! In this day and age of people being extra careful/PC about things, who would have thought that would be such an issue!
ReplyDeleteI haven't even really addressed this with Big Guy's school. Luckily he is not so allergic that if he touches an m&m he has a reaction, but still, I really need to understand the policies.
Thanks for the heads-up! And good luck!!!!!!
Thanks for posting this. As the parent of another allergic girl who is to start kindergarten this fall, I'm beginning to deal with some of these same issues. It's helpful to see what other people are doing.
ReplyDeleteIn my case, we're fortunate in that our daughter's allergist has already told us that he's worked with our school district before, and that he will arrange a meeting with the school nurse, principal, and teacher to go over her needs.
Now I just need to see what reaction we'll get... but having found your blog after reading that hideous Child Magazine article on Allergic Girl's blog, I'm not feeling optimistic. Let's cross our fingers and hope both of our daughters are able to enter kindergarten this year happily and safely!
Hi, Anonymous! I wish I knew your name! Thank you so much for commenting. Please come back and let me know how things are going with your daughter and her school. I'm always interested to hear other people's stories and advice. I hope everything goes well for both of you.
ReplyDeleteIn most Canadian grade schools, allergic children "have to" carry their epipens on them, and parents "have to" provide the school with a second epipen.
ReplyDeleteI was offered a "milk free table" by my child's school.
Toffuti "milk free" desserts are made on the same line as dairy products according to their web site.
Avoiding Milk Protein
Hi, Karen. Thanks for commenting. I checked out your site; you have a lot of useful links.
ReplyDeleteWe feel that Tofutti is an acceptable risk for our daughter because of the precautions they take. Here is a quote from their site:
"Although we would wish it otherwise, the overall demand for totally dairy free products is not large enough to justify setting up complete production lines for dairy free products only. Most plants we use for manufacturing our products mainly produce dairy items. This is true for all companies who sell dairy free products, no matter who they are. In addition to the normal plant sterilization, cleaning, and testing procedures, we employ a kosher supervisory service, the Kof-K, to supervise the manufacturing of our products to ensure that they are completely dairy-free every time. The methodology and techniques they use to clean the equipment and supervise the production is the process called kosherization. Kosher Parve means that there are no milk (or meat) derivatives in our products. It also means that the equipment used to produce Tofutti is either dedicated to non-dairy products or has gone through the rigorous sanitation and cleaning requirements of kosherizaton. In the typical plant, the equipment is washed and sanitized with a caustic rinse and an acid rinse. The caustic rinse is done with water at boiling temperature (212 degrees Fahrenheit). This is followed by a boil-out with pure water. There are several other components to the sanitation, but they are not listed as they do not affect the kosher status. A rabbinical supervisor is present to independently verify that these procedures are being adhered to and to review logbooks and digital records to verify that these procedures are followed."