Food Allergy Plan

Best Allergy Sites has been up for a long time now and throughout the site are bits and pieces of my own personal food allergy journey and experience. I’m constantly amazed to see that there are still parents suffering what I went through in trying to work with their school to provide a safe and inclusive learning environment. I’ve spoken with many such parents on the phone and have emailed with even more offering support and advice. My path was a winding and rocky one, but here it is. My hope is that it will help you, should you find yourself facing difficulties with food allergy accommodations at your school. Grab a cup of coffee or tea–it’s a LONG story.

My son’s allergies are peanuts, tree nuts, egg, sesame and soy. Peanuts, tree nuts and eggs are the most severe and he is allergic by ingestion and also by hand contact to his eyes, nose and mouth. He can not tolerate eggs in most any form–even baked goods.

At age 3 my son attended a private preschool that was nut free/safe and had been for years. It was a small, intimate, caring and understanding school. I always provided my son his own snacks, treat box and cupcakes for celebrations. There really weren’t any food allergy issues and I was almost always given advance notice from other parents regarding birthdays.

We moved to a new town to “set roots” and at age 4 my son entered the public elementary school integrated preschool program. At the time we had just received an IEP (Individual Education Plan) for developmental (social) delay.

Going into the public preschool, I met with the school nurse and signed what seemed like a million health forms, brought in EpiPens and explained my son’s allergies. Peanut free/safe classrooms were not a foreign concept at the elementary school and the nurse agreed that due to the severity of our allergies, the classroom would be peanut and tree nut free/safe. Egg is a severe allergy for us as well but I never thought that I could ask for an egg free/safe classroom at the time. These were my naive days.

My son attended the program half day in the mornings. A note went home from the school notifying parents that the classroom would be peanut and tree nut free/safe. It stated that children that stayed for the full day must have a peanut/tree nut free/safe lunch because lunch was eaten in the classroom. We continued with the snacks from home and the treat box for special classroom celebrations.

Over time I noticed the significant amount of food that was being consumed in the classroom. Teachers used food/candy as a reward for cleaning up, most parents brought cupcakes in for birthday celebrations and there were several holiday/food celebrations throughout the year. I was not always given advance notice and my son was usually not able to participate due to potential cross contamination and his egg allergy.

The situation started to take its toll on our family. I worried that my son would accidentally be given a cupcake or other treat that had egg or was cross contaminated. He started to come home from school asking, “Why didn’t XYZ’s mommy make me a cupcake with a pirate flag too?”

For months we had the typical discussions with him:  “everyone is different,” “you have food allergies and that is life,” “life is hard and unfair,” and most importantly “never eat food that is not approved by mom or dad”. All the while we visibly saw how much our son felt excluded, even though the teachers assured us he didn’t seem to feel that way at school. Amazing the brave face our kids put on for their teachers and classmates. I always knew it was a party day as soon as I picked my son up from school. He’d immediately start to cry as soon as he got in the car. Already with a social delay, we began to wonder how this situation would continue to affect him emotionally going forward.

(A study was recently done showing that the quality of life for those with either food or peanut allergies (I forget which) is less than that of those with diabetes.)

I discussed the issues with the school nurse who then decided that the classroom should be egg free/safe due to my sons allergy severity and potential dangerous situation he was being placed in. Classroom cupcakes and food would stay. Even though they would be egg free/safe in theory–we still only allowed food from home. Another letter went home to parents notifying them of the egg free/safe change and asked them to sign and return the form so the school knew they had received and read it.

This was a difficult time for us in many ways. We were the only allergy family in the classroom, we had just moved to town (a small Massachusetts town) and other allergy families prior to us did not seem to have as strict a view on food allergies as we did. I started to question what was right, wrong, what was okay to ask of the school, what did my son really truly need going forward and more.

Parents started to contact me in confusion regarding cupcakes and my son’s egg allergy. I had to explain that due to cross contamination and egg allergy–my son could not eat the cupcakes even if they were egg free/safe. Parents then questioned why they had to be egg free/safe if my son wasn’t going to eat them. This prompted me to send an email to the parents of the entire class letting them know our situation and trying as much as I could to “explain” and “educate”.

Apparently the email came across as my dictating what should be done and a parent whose son stayed for the full day program got upset and wrote an email that said, “This is not fair. One child’s situation should not dictate what my kid can eat in school. We will not sign the school letter but will try to comply.”

Shortly after and without notice (or discussion with me) the entire class received a letter stating that the classroom would be allergen free/safe in the morning only because the child with the allergy only attended the morning session. The letter stated that peanut butter sandwiches were once again okay for lunch and that the kids would still eat lunch in the classroom.

In that moment, I nearly died. It was clear to me that those who were caring for my son did not understand the severity of his allergies. Or that at age 4, most children touch surfaces without washing their hands. Or that my son is/was immersed in the classroom and had prior severe reactions, outside of our home, from touching surfaces and then touching his eyes, nose and mouth. It was clear that someone really didn’t get it or really wasn’t thinking through things clearly.

I immediately contacted the teacher to ask what protocols were put in place for cleaning and explained again the severity of the situation. I was told that there were no written cleaning protocols in place and that they would spray and wipe the tables as usual. Sounding, I’m sure, like the hysterical parent others like to call us food allergy parents–I asked, “what about the chairs, what about the underside of the table, what about the faucets, doorknobs, toys?” The list went on. The teacher looked at me blankly and forwarded me on to the principal.

I went to the principal and school nurse. The nurse (who was originally on my side) seemed to have a complete change of heart. I was asked “well how do you take him out in the real world?”

I was dumbfounded. Did she really want me to answer that? Was she aware that there were places we simply did not go because we couldn’t, that we wiped surfaces in public places, that “I” was there with my child one on one to ensure his safety and most importantly that school is legally “not” an option?

The principal had made up her mind and the classroom would stay allergen free/safe in the morning only. I immediately pulled my son from the program, started to write letters and keep documentation and started to educate myself because in my gut “this just didn’t seem/feel right.”

In all fairness, it is the principals job to take into account all children and families. I understand that now. One allergy mom vs. 19 other moms banging on her door. Not fun-I get it. In my honest opinion–no one said it was an easy job. Doing the right thing isn’t always popular or easy.

After several emotional phone calls and letters to the school (I can’t help it, I’m super emotional by nature), the principal asked that I get a doctor’s note stating that my son had allergies, the severity of the allergies and that the classroom “needed” to be allergen free/safe.

My current allergist was less than helpful stating that is was not their job to enforce school accommodations and that the Massachusetts Department of Education had published a list of guidelines for schools to follow.  I was able to get a letter that was “good enough”. However the situation set me on the path to finding a new and more understanding allergist.

Eventually the school found another place for these children to have lunch. A letter never went home from the school indicating that the classroom would again be allergen free/safe the entire day (24 hours) and (not surprising) I never received an apology.

Unfortunately and fortunately I suppose, this situation lit a fire in me and opened my eyes to SO many issues that I kept moving forward. I spent hours educating myself, making phone calls and finding out all that I could because it still didn’t seem or feel right that my son could be so blatantly excluded and put in harms way.

I discovered that our district did not have a food allergy policy, procedure or set of protocols even though the MA Dept of Ed had written guidelines years prior suggesting that all Massachusetts schools do so. These guidelines came after 3 student deaths from food allergies on Massachusetts school grounds.

I realized that we had an IHCP (Individual Health Care Plan) with the nurse that was basically a blank form that was signed. No accommodations were listed. Shame of me for not knowing. How that got past me I’ll never know. Call it trust or faith in the school to do the right thing. To this day I’m still not sure.

It was through this process that I started to educate myself about disability laws and the difference between IHCP, 504s and IEPs. (More information at the end of this post regarding the different plans.)

Every person is different and every food allergic child is different. Accommodations vary. But based on what we were going through, what I was learning, my son’s age (young), his social delays, and that we would be at this school forever (that was the plan), I sat down and wrote out what I really wanted for my son going forward.

For us it was:
1. Completely allergen free classroom (peanuts, tree nuts, egg) (sesame and soy are iffy allergies–long story that I’ll share in a allergy testing post).

2. Food free celebrations (inclusivity is very important to me–my son was feeling very left out).

3. A bunch of other somewhat minor stuff–the 2 above were the most important.

We eventually got:
1. The allergen free classroom (peanuts, tree nuts, egg and whole soy–processed soy is okay).

2. Allergen free packaged and labeled foods for celebrations with a letter going home to parents “suggesting” food free birthdays. (This happened 1/2 way through Kindergarten and more thoroughly into first grade.)

3. And a bunch of other things regarding field trips, lunch, the bus etc. that are important but too lengthy to list.

How I got there:
It took over a year. I had go through the school nurse (who changed twice), the principal (not helpful), the superintendent (not helpful either-supported the principal), the school committee (somewhat helpful), the school council (no pull but seemed understanding).

I called the office of civil rights, the board of special education, a disability attorney, a food allergy advocate, and more.

My first push was for school policy since there were NO written food allergy policy, procedures or protocols even though we have the first US “Food Allergy Guidelines” in Massachusetts. The superintendent said “yeah, they’re just guidelines.” This was another naive moment for me. I thought that by focusing my time and attention and pushing a district policy I would be helping myself and others.

To be clear I never asked for a peanut free/safe school. I did not think that was necessary for my son so long as precautions were taken. I did ask for advance notice for birthday parties (so I could bring our own treat in) to which I was told no–too difficult, I asked for peanut tables rather than peanut free/safe tables in the cafeteria (my son sat alone at lunch repeatedly) to which I was also told no. I came up with suggestion after suggestion, compromise after compromise and more often than not the response was a flat out no. In hindsight I still feel that I really tried hard to work with and compromise with the school.

After more research I decided that I wanted the entire school to go food free not just for food allergy but also for other health reasons. Several non food allergy parents support/supported this idea. It was and is currently happening all over Massachusetts and across the United States. I was met with extreme resistance and it was then that I decided that I needed to focus on MY KID first and THEN the school. A now obvious but then light bulb moment for me.

So I pushed for a 504 plan. I was told we couldn’t have a 504 plan because we already had an IEP. (I’m still not sure that’s true legally.) So we drafted up a better IHCP. The classroom would be allergen free/safe but at this point (going into Kindergarten) treats would still be allowed. We entered  into Kindergarten with a rocky start. We still had issues and several incidences. At times I felt as though the IHCP was not being followed 100%. That it was just put in place to please me and end my advocating efforts.

As luck would have it our district got a new special education director. I met with her, explained our situation–supported with research. She later called an attorney where she used to work and his response was “she’s right!”

“Life threatening food allergies are a disability under law.” Section 504 and ADA

This means my son (and all other children with life threatening food allergies that attend public schools that receive funding) are entitled to:

FAPE: A free and appropriate public education EQUAL to that of their non disabled peers.

(Go ahead and read the bold part again. It is important information that so many are unaware of.)

This was a huge start. I was arguing this point with the school for over a year and now someone was finally listening to me and trying to do the right thing. Unfortunately, there were additional downright ugly meetings. The principal said to me (regarding my playing the disability card and not wanting (unnecessary) cupcakes in the classroom) “you wouldn’t make all the kids in a class wear glasses just to make the kid who has to wear glasses feel better” and  “lots of our kids here have disabilities and that shouldn’t affect what the other students get to do”.

Never did we or do we want our child’s issues to adversely affect others. However, we feel strongly that all children should be treated equally and given equal opportunities including a “safe and inclusive” learning environment. Unfortunately at times accommodations may affect others. In our situation our accommodations weren’t affecting another child’s legal accommodations, they were inconveniencing those who wanted to bring in birthday treats. (To be honest and fair, snack is eaten in the classroom and needs to be peanut, tree nut and egg free and while I understand and appreciate that inconvenience–I stand by the fact that it’s to keep my son safe.)

I’m sure there were many school/team/legal conversations behind closed doors unbeknownst to us, but at the end of all of this–the school/team finally decided to redraft our IHCP (with compromises) and attach it to our existing IEP to include what I have listed in the numbered section above.

Would I do anything differently?
Yes and no. I feel that I was a bit over emotional and head strong at times. I was very combative and threatening. However, I was easy going in the beginning and felt that the school used that against me and walked all over me. I could have handled things better–left some things unsaid–but at the end of the day I got pretty much all that I felt that we needed and I’m positive it was due to my research and advocating efforts.

It did take me threatening to file a complaint with the board of special education and office of civil rights. It did take a lot of meetings, research and advocating. It took many hours, weeks, months of my life. And it did take luck in finding a new sped director that was willing to listen and hear my side.

As a food allergy community; the laws are on our side. But it’s up to the schools to comply–and honestly–most schools only get a slap on the wrist if they don’t. Many parents won’t or don’t want to take their issues to court. It can be time consuming and costly. There were days that I really wanted to cave in and give up. On those days I would read message board stories from food allergy parents who wished they advocated harder because their now 10 year old was/ is bitter, or feels isolated. I would think of the children that I had read about that had died from food allergy reactions in schools due to misunderstandings and misinformation.

I kept saying over and over again to my husband, family, friends and whoever would listen; “we are fighting over freakin’ cupcakes!” That is what it really came down to and I still find it absolutely absurd. One child’s right to safety and inclusion vs. 19 other kids rights to a classroom birthday cupcake. Is this what we as parents have come to, what our schools have come to, what we are teaching our kids?

It’s a hot topic in our country. Do an internet search on “cupcakes banned in school” and you will find a number of articles and lengthy (sometimes nasty) comments on the non food allergic child’s right to celebrate their birthday in school with cupcakes.

I’ve stopped reading these articles. I’ve stopped commenting with what was once the hope of spreading awareness and education and getting others to understand. It is and was emotionally draining.

Bottom line:
If you have a school that is great and willing to work with you, an IHCP for food allergies should be enough. There are days where issues will come up. A part of the plan might fall through the cracks. But if you feel that the school is really trying–it’s worth trying to preserve that relationship. Issues that you thought were resolved will upset you, just tweak the plan as you go along.

If, however, the school seems completely unaware of food allergies or is giving you a hard time–you can apply for a 504 plan. With life threatening food allergies you should qualify as the body system that is affected is breathing. (To qualify for a 504 plan you need to prove that the disability affects a body system.) Ask your school who the 504 plan coordinator is. Every school should have one. Get an allergist letter stating that your child has “life threatening” food allergies or at least potentially life threatening food allergies (if they do).

A third option is an IEP or Individualized Education Plan. To receive an IEP, one must prove that the disability affects learning. Some are able to do this by showing that school absences due to allergic reactions and medications affect learning. Others already have an IEP for other reasons and their food allergies are added on under the category OHI or Other Health Impairment.

Keep in mind that no matter what plan you end up with, accommodations are still a compromise between parents and the school. These days most schools will agree to a peanut (or other allergen) free/safe classroom for younger children and those with severe allergies. If the school gives you a hard time on that one (and I’ve heard of that happening) you may need to address the issue through the appropriate channels all the way up to the state level. The whole food free celebration issue is up for debate, even within the food allergy community. You have to decide what is important to you.

I was personally willing to take the school to court over it because of my son’s documented social delays and IEP. I felt that excluding him by having him be the only one eating something different, 20+ times a year each and every year,was potentially emotionally damaging. Forget about the fact that I would be the one responsible for making and providing the substitute treats. I believe I had a good and solid legal case. Luckily I didn’t have to take it to court. Even after all that work and all that I learned, I didn’t want it to have to go that far.

You have to decide what it is you want for your child, what you are willing to compromise on and how far you are willing to go.

I’m happy to say that through it all we got most of what we wanted AND the school committee drafted and implemented their first food allergy policy and procedures. The school cafeteria that once served Uncrustable peanut butter and jelly sandwiches stopped ordering them. Hot lunch is peanut and tree nut free. The every holiday “free cookie day” in the cafeteria at lunch has stopped. And there have been more positive  safety and inclusive changes that I never asked for, that I’m sure most of the non food allergic kids and families haven’t even noticed or missed. For me–it was worth it.

This process led to me becoming involved with the Asthma Allergy Foundation of America-New England Chapter.  It led to my founding this website and advocating for and writing about food allergies. It brought me to meet people I never would have met; food allergy friends, writers, bloggers, safe food manufactures and our new allergist. He’s allergist number 3, but we are thrilled to now have someone who is so caring, helpful and understanding. He’s worth his weight in gold.

How are things today?
There are ups and downs with our plan. No plan is 100%. The start of a new school year is always hard with educating and informing a new teacher. However, my son is rarely excluded and I feel he is as safe as he can be most of the time. Each year we hit a new milestone and update his plan to meet his age and needs. As he grows we teach him to take more responsibility for himself and his allergies. It’s a process.

One of my favorite arguments to those that insist we teach our young food allergy kids to take full responsibility is: “You don’t let a 4 or 5 year old cross the street alone, so why would you expect a 4 or 5 year old to manage all that comes with having life threatening food allergies–especially when they can’t even read food labels?” Sometimes it takes putting things in perspective for others.

The dust has settled and most relationships with parents and school members have healed.

A very smart disability attorney said to me “at the end of all of this they will eventually have respect for you for advocating for your child.”

I don’t know whether that is the case or not and for me it doesn’t really matter anymore. I’m learning now that I can’t be held back by worry or concern about what others will say or think of me. I can only move forward and do what I feel is right for me and my family. Not everyone is going to like me or my kids–and that is okay. For me–this path was right.

You need to choose your own path and it might be similar to mine or it might not be. Remember that there is no right or wrong way to handle life in this food allergy world. Whatever path you choose–it is yours and will be right for you and your family.

If you’ve made it through this lengthy tale, I sincerely thank you. It took years to live (we are still living it) and hours to write, but it’s important to me that I share our experience with the hope that it will help some other food allergic child or parent going through exactly the same thing in this moment on this day.

If I could only say one thing to you it would be: “It will and does get easier.”

For more information on school plans and further school resources, visit our Schools and Food Allergies Resources and Links page at:

https://www.bestallergysites.com/allergysupport/allergy-101/school-resources/schools-and-food-allergies-resources/

I’m always willing to connect via email or by phone. If you are looking for more information, suggestions or support regarding your own situation; please feel free to email me at admin (at) bestallergysites (dot) com and I will try to respond in a timely manner.

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