Tuesday, August 28, 2018

504 Plans for Food Allergies

Before I get started, let me preface this post by saying that this is our experience with Wake County Public Schools as my son entered Kindergarten last year with life threatening food allergies. What we experienced may not be the same as what others are experiencing, but due to the number of questions I've gotten and discussions I've been a part of -- sadly, I know many are facing similar situations.

I'm admittedly at a loss for how to start this post and encompass everything I've wanted to share with other food allergy parents. There is a lot of information we've learned -- and more I'm still learning. But we've been down this path two years now, and it's been a bumpy ride. It's my goal to help as many other parents realize their rights for their children and help however I can. We all want to keep our kids safe.

First, being worried about sending your food allergic child to school is totally normal. Read that again -- totally normal. Fighting for your child's rights and accommodations and getting through the bureaucracy of the system is exhausting. You will be emotional, and that's ok. Trusting others to care for your child -- and their life -- is a big deal. Bigger than a big deal. Hopefully what we learned through our battle will make yours a little smoother.

Biggest Takeaways
  • If your child has a life-threatening food allergy, they are eligible for a 504 Plan under the Americans with Disabilities Act. This provides you legal support through the Office of Civil Rights and holds the school accountable for following the accommodations set forth in the 504 Plan.
  • Many schools will tell you that you don't need a 504 plan because WCPSS has a comprehensive Individual Health Plan that will be created at the start of the year and that will be more than enough to protect them. Not true, in many cases. This health plan has set options, you cannot go beyond those or edit those for your child. And this document is not legally binding. Anytime a staff member doesn't follow the plan, you can file a complaint at the school level but the way that's handled varies from school to school. The 504 plan allows you to file complaints with the OCR and the school is held legally accountable. (And legal services from the OCR are free to you.) They don't want this. Hence, many get push back when asking for a 504 plan. Or, are not even offered the plan to begin with.
  • There a lot -- too much -- inconsistency between schools within WCPSS for how food allergies and health plans and accommodations and 504s are handled. Some parents have no issues. Some are at their wits end trying to figure out where to turn and how to move forward.
  • If you want any additional accommodations beyond what the health plan offers, you will need a 504 to make that happen. And even then, you won't likely get everything you want. 
Our Approach and Tips

Keep everything in writing. Make sure you have records. If you have a conversation with the nurse, follow up with an email summarizing your discussion. When you are going through your health plan options, ask for a 504 and follow up that request in writing. Once you request it in in writing, they have a certain amount of time to legally respond to you. This amount of time varies by state. NC happens to have a longer time frame. But you're likely to hear back quickly.

Meet with your allergist and ask them to write what accommodations are best for your child. Think about things like hand washing, table cleaning, shared/separate supplies, snacks in in the classroom, substitute teachers, teacher/parent communication. If you need an example of this type of document, reach out and I'm happy to share with you. This documentation will be needed in your 504 meetings. 

Start this process before school starts. It took us three months to get our 504 in place. I've heard since that many have had no trouble asking for the same accommodations. (I'm guessing because the WCPSS lawyers told these teams to make it happen.) Get your health plan in place while you work on the 504. And again, document everything. Start with your school nurse and principal, and 504 coordinator if you know who that is. You technically don't need to have the school nurse involved at all in a 504 plan creation, but WCPSS has them involved. 

Come prepared. I had a binder that included information about 504 plans, our legal rights, our child's recent allergy testing, letter from the allergist, recommendations for managing allergies from reputable sources like FARE and the CDC. (I'll try to come back later and add in links.) I took the binder, a notebook and entered the room with all the information tabbed, highlighted and at my fingertips. They knew I knew my stuff. This goes a long way. Also, record the conversations if you feel the need. It's my understanding in NC only two people need to be aware of a recording taking place for a recording to be considered evidence. So, if that's you and your spouse, then you're set. We came back home and wrote out everything that was said which we could provide to our attorney (more on that shortly) and we could refer back to specifics easily. 

Don't be afraid to toss out the word attorney. In our case, we hired an attorney. We were met with great push back on our requests and had a hard time figuring out how to get from point A (lame health plan) to point B (accommodations we were comfortable with). She was critical to knowing our legal rights and helping us work through the process. We only needed to have an initial consultation, and we never had to tell them we had an attorney. But, I'm sure the WCPSS attorneys and higher ups knew we had someone in our back pocket because she helped us write emails and take specific steps. This is the legal right of your child, this protection. Don't let them tell you otherwise. Be firm and mention you are ready to secure an attorney if it comes to that. 

Expect to not get everything you want. My husband and I made a list of our needs, wants and nice-to-haves. We were prepared to not get our nice-to-haves in the plan but it allowed us to be 'giving' on some measures while pushing for those that were the higher priority items. Consider if you want your child's table space cleaned with something other than only water (which is WCPSS policy). Consider if you want your child to have separate supplies since snacks are often consumed in the classroom and supplies are shared. Consider when you want hands washed. Consider if you want to send in wipes with your child to wipe their hands and space before snack/lunch, even after it's been wiped down by a teacher. Consider where you want your child to sit and who sits around them. Consider how you want to communicate with your teacher and school staff in case of emergency. Consider how the school plans to handle volunteers or substitutes in the lunchroom, and their training.

Watch out for tricky moves. We had our big 504 meeting which included someone from the county office, our principal, teacher, school 504 coordinator and my husband and myself. We went through the 504 eligibility program and came away thinking we had a 504 plan. After sharing with our attorney we realized we only had a document stating our son was 'eligible'. It was not, in fact, an actual 504 plan. And no one was mentioning that to us. I wrote to ask in very certain terms and sure enough, it wasn't a 504 plan. So, we had to meet again. I don't think anyone would have ever pointed this out to us. And I've heard of it happening to others, as well. You will be told the 504 is just the 'health plan wrapped up in the 504' and therefore, not needed. Not true. The 504 grants you legal protection and allows you to push for additional accommodations. 

What We've Learned About WCPSS Policies
  • After months of asking, going to media and asking again, we did finally receive the 'sources' for their food allergy guidelines. Ironically, most of these were the same sources that our allergist provided for the accommodations we were asking for. WCPSS is behind the curve in a lot of areas as far as food allergy management recommendations that are widely supported by groups including the National School Board Association, the CDC, FARE, etc. (And this I'm pushing the school board on. Join the Families for Food Change in Wake County Schools Facebook group for updates on that effort.)
  • Tables, per guidelines by the county, are only cleaned with water between classes in the lunchrooms. Only at the end of the day are tables cleaned with soap and water. Water is known to not remove nut proteins. (Not to mention the sanitary concerns.) This was our biggest fight for our 504 plan and our son's space (and his space only) is cleaned with soap and water. More information about our fight against this policy can be found at www.cleanourtables.com
  • You will find that some teachers will go above and beyond -- and outside the health plan for 504 accommodations for your child. The system frowns upon this because they can't legally protect a teacher that isn't following the health plan.
  • You can have your child wash their hands before/after eating (or throughout day) as a part of your requests, but you cannot ask that other students wash their hands. Something about you can't force other students to wash their hands. This option (of everyone washing) has been in the health plan options in years past, but was removed as of last year. We settled with our son's class is offered the option to wash their hands after lunch. About half do. (However, when my other son's class was hit with a nasty cold early last year, the teacher added three hand washing visits to the restroom. Which, I greatly appreciated. But, why is a cold reason to regulate washing but not food allergies?)
  • WCPSS is very sensitive to asthma and skin reactions as far as cleaning products. Our child has asthma and skin reactions (to some products), so I sympathize with this. But putting that as priority over a life threatening food allergic reaction gives me great pause. I asked, in tears, who determines these priorities and how does this make sense? 
  • Yes, you are asked to send in Lysol and Clorox wipes but they are only to be used when the students are not in the room (per policy) and for 20 minutes after. Some teachers do their own thing here. Others do not and only wipe at the end of the day.
  • Your child can bring their own wipes as a part of their accommodations to wipe their hands/space as they feel they should. I asked that the teacher remind him (since he's young) to do so. Nice 'n Clean wipes have been shown to remove peanut residue. I order from Amazon and keep in my son's backpack, snack bag and lunchbox. 
  • Letters can go home as part of the health plan to tell parents of your child's allergy and request the allergen not be sent in for snack. But, it's a request only. WCPSS will not restrict food sent in. And teachers, legally, are not supposed to read labels. (And trust me, either no one reads this letter or they don't care. My son's class had people sending in peanut butter all the time.)
  • You will hear the terms 'false sense of security' a lot. Around hand-washing, limiting food parties in classrooms, etc. There are new studies that debunk this way of thinking. A lot of what we are asking for not only protects those with food allergies, but are healthy choices. If I heard 'false sense of security' one more time, I thought I would scream. Yes, we realize that all the hand rails aren't wiped down and the playground equipment isn't wiped down and they all go to the technology lab, etc. But washing hands and limiting allergens in the classroom can help. Just be prepared for your response to this phrase if it comes up. 
  • A lot of their policies to keep these kids 'included' are actually exclusive. Valentine's boxes with 'fake' Valentine's sent in from us is not inclusive. Sitting in one spot every day because other spaces can't be cleaned and a buffer of safe friends around them is not inclusive. Birthday parties (18 last year) and separate alternate snacks is not inclusive. 
My biggest takeaway from all of this was, and continues to be -- this should not be this hard. We, as allergy parents know that we can't keep our kids in a bubble. We know that they need to learn to live in a world with their allergy, and they will. And they understand and feel a lot more than we probably realize they do.

But, especially in elementary school, they are kids. Their lives should not be their responsibility solely. Yes, we can all teach them what to look out for and how to speak up for themselves, and to trust those caring for them and to voice their concerns. But we need to also let them be kids. We need them to love school and to feel safe. 

Our children, and us as their parents, carry the weight of a serious reaction or loss of life on our shoulders. No child or parents should have to carry that. So, use your stories of your child. Speak with emotion but keep your cool. Come prepared. And advocate for your child until you have what you need. Because you are entitled to that -- and our kids deserve it.

If you have any questions, please feel free to reach out to me. I'm here to help however I can as I continue to learn and advocate. 

You've got this! 

Sunday, July 22, 2018

Allergy Mom: 'Twas the night before a new school year...

Twas the night before a new school year. And I have it all under control. Almost. I have all the supplies, backpacks packed, emails written, newsletter in the works, hand wipes and outfits all ready to go. These are the things I can control. So, I embrace them. And I get in control.

What I can't control, though, is what terrifies me. It's what has me on edge. My anxiety rippling under the surface. With a new school year comes a new classroom, a new teacher, a new grade level -- all leaving the comfort and familiarity we had as we left Kindergarten with Elias.

You see, he has life threatening food allergies. Specifically to peanuts and tree nuts. And you see, I watched his classmates bring in peanut butter crackers and the like to snack to eat in his classroom often last year. Even though a letter went home from the school system requesting no items with nuts be sent in due to a student's allergy.

I know what happens in the cafeteria. I know there are nut residue proteins everywhere. I know that supplies are shared. I know I couldn't possibly protect every surface. I know nothing will do that. I know Elias is growing and learning he's different. I know he hates he can't choose his seat (or seatmates) at lunch or snack. I know he was excluded from 18 birthday parties last year and his 'special snacks' lost their luster. I set those rules for him, as the are the best things I have as tools to protect him.

I've learned more about the Wake County Public School System's policies -- or lack thereof -- than I care to have ever learned. I know their policies put kids like my son at risk. I know, one day, their inability to budge on such an important matter -- and follow recommendations set forth by expert organizations -- is going to be harmful to a child. It's only a matter of time. And that infuriates me. I spent this summer settling my heart after a battle against the school board last year. And now that school is tomorrow, it's all coming flooding back.

I'm thankful for our small school. That everyone knows my boy and his super protective and intuitive big brother will be right there. I'm thankful that we know his teacher. I'm thankful that we fought for his 504 plan and have a few additional measures in place to protect him.

But it's all so unknown all over again. I want him to be a kid. To not worry about life or death from things he may not even be able to see with his own eyes. I want him to choose his seat and his friends beside him. I want, I want, I want.

But these are the cards we've been dealt. And we will handle them with grace and strength. I'll keep pushing for change and praying for protection.

I know that his peanut oral immunotherapy played a big role in keeping him safe in Kindy. I suspect the eczema he developed on his face the last few months of school last year had something to do with a year's worth of peanut or nut residue building up on all the surfaces, manipulatives, keyboards, supplies. The skin is the last organ to 'forget' the allergy in oral immunotherapy.

I also know that one odd flick in his immune system one day -- be it fighting off the latest virus or environmental allergens -- could complicate his peanut dose that day, or the next. I know that I'd pick up on things during the day that others will not. I know that his peanut numbers are continuing to come down (thank you, God) but he's still considered highly allergic. I also, sadly, know that his tree nut numbers have climbed up. Which was unexpected and is a new fear, just as I was finding pretty solid protection against the damn peanut.

All these things I know. That are flying around in my mom brain, as my baby sleeps peacefully in his bed. Tomorrow he's a first grader and tomorrow I have to let go all over again.

I hope for understanding of other parents. To read the letter stating a classmate has a life-threatening allergy and to take it seriously. For empathy. To realize that I send my child to school daily worried for his life.

I hope for good friends. Understanding friends. Those that watch over him and ask their parents to peace out on the peanut butter and mixed nuts for their friend, Elias.

I hope for an administration that is willing to change. That is willing to see the need for change. That is willing to hear me out and not roll their eyes when I leave their office.

I hope for teachers with a watchful eye. Close ears. And my phone number on speed dial on their phones.

I hope I sleep tonight. I hope I can send him off with a big smile and keep the tears in. It's terrifying. And with faith, I hope a few weeks from now we'll be in a new normal, feeling safe and establishing a great new routine with those who are caring for Elias this year. But right now, I'm just flat out nervous. And right now, it angers me that this is the way it is for me and other parents like me every year. And I intend to do all I can to make it better for us all. Mostly for our children. And their lives.

Thursday, August 31, 2017

Life as a food allergy family

See that excited, book-bagged, 5-year-old up? That's our Elias. On his first day of Kindergarten. On his first day outside of the bubble of safety we've kept him in since he was diagnosed with life-threatening peanut and tree nut allergies at the age of 15 months. And don't think we stayed inside and never left our nut-free home. We just learned how to protect him, what measures to put in place, where to eat and not eat, what to eat and not eat, how to read labels, how to know what labels to trust and which ones to not trust and over time, how to accept our new normal.

And as of July, it's an entirely new normal now that we are in the public school system. We've had to teach our 5-year-old child - a child - how to advocate for himself. How to tell strangers or less-familiar adults if he feels strange or concerned. How to not touch his face for his safety. How to only eat what he knows came from our home. How to not touch surfaces. How to wash his hands properly and often. How to trust in those we tell him he can trust. How to not feel different. How to accept that he can't eat what is brought in to celebrate during class parties.

And further --

How to trust in a school system that's throwing around 'evidence based' research as their guidelines for managing food allergies without being able to back that up with scientific studies or documentation. How to trust in a 'health plan' that is meant to 'protect all students' but, in truth, isn't set up in a way that protects those with very severe allergies - like our son's - to the maximum extent possible. How to deal with being told 'no' when you and your doctor are requesting measures that go above their 'guidelines' for the county. How to show the school that you love that you trust them, but you don't trust the system. How to effectively convey to your son's teacher what a life-threatening reaction may look like - even though one reaction can never be a true indicator of a later reaction. How to say goodbye each morning praying that today isn't a day that your phone rings with bad news.

As his parents, we know the weight of his diagnosis. We know that his allergen could kill him. Kill. Him. A food. It could kill our child. And as a child, I think he understands the severity even though we don't talk about death with him in those terms. He's a child. He shouldn't have that weight on his small shoulders. But he knows what's going on. We have to balance our worry and concern and fight for him with remaining calm and positive in his presence. We don't want him to be scared of dying. But, at the same time, he needs to know the severity of the situation. And he has to advocate for himself. At age 5. I just wish he could be 'just a kid' and not worry about these things.

The fear of every cough. Of every meal. Of every hour. Of every surface. It wears you down. It's all-encompassing and exhausting - but it has to be if we are doing our best job to protect him. He deserves that.

It's hard to explain to others. I didn't know myself until I was forced to find out. Elias would develop hives often as an infant because his older brother and myself ate peanut butter daily. We were sharing living space, toys, a home. There was residue that we couldn't see and didn't know to fear. When he first directly touched peanut butter, he broke out in large hives from his elbows up to his mouth. And later, at age three, he had an anaphylactic reaction.

I try to not think through the events of that day because it haunts me. What started as a nagging cough turned into his airway closing. Hearing the wheezing and stridor. Hearing him lose his voice because everything was swelling. Giving him the life-saving epinephrine and rushing to the ER. Operating in robot mode because you don't really want to think about what just happened. But it did. And it does.

To those reading, if you get a letter home from school that there's an allergy in your child's class - please, take it seriously. Read it. If it's only requested that you not send in the allergen if possible (which is the case for us), please don't send it in. Let these kids be kids and do their math centers and science activities without their allergens (invisible in many cases) on the surfaces. Let them be kids. Let them learn. Let their teachers breathe a little easier knowing no one sent in a 'deadly' snack that day.

Because the truth of the matter is, children like Elias do not have to have some visible piece of their allergen on their hand and put it directly in their mouth. It can be residue on their hands from a block or table and they scratch their eyes. Or, yes, pick their nose. Or wipe their mouth. Or not wash their hands as well as they should. I know, it's hard to fathom. Trust me, I get it. But it's our reality and the reality of thousands of others like us.

Here are the facts --

  • Nearly 6 million children in the U.S. – which equates to 1 in 13, or roughly 2 in every classroom – have a food allergy.

  • Studies indicate that 16-18% of school-age children who have food allergies have had a reaction in school. In addition, in approximately 25% of the reactions that occur at school, the student had not yet been diagnosed with food allergy.

  • Studies have shown that conventional cleaning methods are effective in removing the protein of a food allergen such as peanut. Bar and liquid soap is effective for removing protein from your hands, while alcohol-based sanitizer is not, according to a study published in the Journal of Allergy and Clinical Immunology;. That study also showed soaps and commercial cleaning agents effectively removed peanut protein from tabletops, while dishwashing liquid alone did not. 

  • According to a study of anaphylactic events that took place during the 2014-2015 school year, almost half occurred in the classroom at a rate more than double that which occurred in the cafeteria. 2,191 anaphylactic events were reported, the majority of which occurred in the classroom (46.6%), followed by the cafeteria (19.9%) and the playground (9.7%).

So, your child eating a yummy peanut butter dipped granola bar in the drop off line, then coming into class without washing their hands could harm my child - or others like him. Yes, I'm serious. I'm not being dramatic. I can back up the facts above with published studies, which I can't say for our school system thus far.

Until we find a way to get proper accommodations in place in an effort to protect Elias at the very maximum extent possible, I'm going to keep going. Talking. Advocating. Creating awareness. And I'm going to keep worrying now. And, honestly, even when we find a way to make his school experience as safe as possible I'll keep worrying. Because that's my job as his mother.

I'll ask you what your child has in their hands at the park. I'll ask what's in your snack bag if we are beside you at a school picnic. And I'm not a helicopter parent. I'm trying to keep my child safe, well and alive.

That's my job. That's our job as his parents. To fight for him. To give him the best tools you can give a 5-year-old to protect himself. And to pray for his protection.

And to love him and his brothers with all we have. To treasure each moment. To empower them. Educate them. Let them be kids. And pray we are handling it all ok. Us allergy parents are doing our best here to deal with our reality. And for us, we are trying to come out stronger for it.

So far, so good.

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