She looked at me with her almond eyes full of thought, as if she understood everything. After a long pause she softly said, "It's okay, Mommy. I won't care if no one sits with me at lunch time." My heart broke for her. At four years old, she was exceptionally perceptive. I could tell she was sad, but she didn't want me to worry about her. I wanted to cry; she was trying to take care of me, but I was the mom. I had just explained to my daughter the plan that we created with her new school, where she would be attending full-time prekindergarten. The plan is called a 504, and it is through the Americans with Disabilities Act and includes a list of accommodations, which ensures children with special challenges are safe and included while in any school that accepts federal funding. For my daughter, who has severe food allergies, we requested an allergen free lunch table, among other things, where a friend can choose to pack a safe lunch to sit with her each day. I was worried she would have to sit alone sometimes and I explained this to her, while trying to sound casual, even though it bothered me. As usual, she could see right through me.
I'm sure my daughter had seen this look on my face for six month now, despite my efforts to hide it. This nightmarish 504 plan that I started working on back in April, cost me many sleeplessness nights and countless days worrying and planning. Because my daughter has severe food allergies, is touch reactive, and still puts her fingers in her mouth, I was terrified to send her to a large public school. She has had 6 anaphylactic reactions in her lifetime and countless other reactions that have been awful. She has asthma and I know that this increases her odds for death. I woke up in cold sweats, my thoughts were occupied and tortured by how to do this plan to keep her safe. I read nightmare stories from other allergy-moms, whose schools refused to accommodate their children. I read about several children's deaths from anaphylaxis, while at school, and horrible stories of food allergy bullying. At times, I found myself paralyzed with fear. My mind would race from one thing to another and I struggled to figure out what I should do first.
I read article after article on the laws of 504 plans and the challenges with food allergies. However, I was still so unsure of what to do. I knew I had to create a list of accommodations, but I didn't know what to ask for, since I had no idea what situations might come up during a typical school day. How could I protect my child when I didn't know what dangers might be lurking? No one from my FB groups would share their specific accommodations with me. I could only find one person who had completed a 504 for food allergies in our school district, but they were not at our specific school. I decided to call the school to ask about the structure of the day, what type of accommodations had worked for other families, and also discuss the 504 process. To my horror, I learned that the school had not constructed a 504 plan for food allergies before and did not typically have meetings to create plans. In my conversation with the special education director, it was clear that, although she wanted to be helpful and was very kind, she did not have experience with this.
When I hung up the phone, my heart sank to the floor and my anxiety shot through the roof. I understood at this point that I would have to lead the school through this process, but I had no idea what I was doing. After several days of worrying, I called our allergist's office in desperation to ask for help. Thankfully, the nurse I spoke to was very well informed about the 504 laws, our local public school system, and what exactly I needed to do in order to get started. She encouraged me to be a strong advocate for my child with the school and demand to meet with anyone I needed to in order to get this done. I felt energized and hopeful for the first time in months. Following her directions, I emailed the school requesting a meeting in writing, and made an extra appointment with the allergist to discuss the plan. I googled other 504's and, although I could not find one that had the same allergies as my daughter, I was able to piece together some things that I thought were the most important. I was still very nervous, but I felt like I had some support and a little bit of a direction at last in order to begin writing a plan.
After meeting with our allergist in person and going over the plan I constructed, I felt much more confident. He fully supported my daughter having a 504 and the accommodations I was requesting. He even stressed some things that I did not think of and offered to write a letter with his own recommendations. My husband and I were able to meet with the school for two meetings over the course of several months and hash out accommodations that we felt would keep her safe and included. The meetings did require some strong advocacy and were not by the book, but ultimately, we were able to get the plan that we wanted for our daughter, and THAT is the most important thing. My feeling on the school was that they wanted to be helpful, but simply did not know how to, since they had not done this before. It was very much up to me to understand the laws and construct a pathway to create this plan because there was no "typical" way to do it or anyone to lead me through it.
This process has been one of the most stressful things I have ever done in my life. It literally went right down to the wire, as we finished the plan the day before school was supposed to start, even though I started working on it 6 months earlier. I was fearful at one point that my daughter would not be able to start school on time, but we worked it out. (It's also important to recognize that we were launching our baby to full-time school for the first time, which is a stressful milestone in itself.) I have grown many gray hairs, gained and lost pounds, and exercised until I couldn't do another push up, just coping with the stress. My allergy-mom friends have been a wonderful support, helping me muscle through it. There are a few key lessons that I learned, that I'd like to share with you all. I hope this will help others when navigating this stressful and confusing process. Feel free to contact me with questions also. Support is key to managing this!
What NOT to do:
1) Don't assume your school district will have a clear path for creating a 504 plan.
2) Don't assume your school already has allergy policies in place to keep your child safe and included.
3) Don't be afraid to request a meeting with anyone you feel is necessary.
4) Don't be afraid to talk with your allergist's office about it first.
5) Don't rely on other's to provide you with a blueprint.
6) Don't assume that your requests will NOT be granted, no matter what they are.
These are the things that I learned to do:
1) Call your allergist's office and speak with a nurse or your allergist about your questions as soon as possible.
2) Schedule an in person appointment to discuss your needs with your allergist.
3) Send an email to the 504 coordinator and cc the principal and nurse about scheduling a meeting and do it early; I'm talking April!
4) Do your research! Google 504 plans, talk with other parents and teachers at the school to get a sense of the events of the day, so you will know what situations might come up. Find out how other schools in your area have handled accommodations successfully.
5) Do prepare a sample of your requests to bring to the meeting.
6) Bring support, e.g. your partner, friend, or family. These meetings can be emotionally draining. You are arguing about how to protect your child. The school will likely push back in certain areas, which can be upsetting. It is important to have someone else there to provide support and keep things moving and business-like. You must look at this like negotiating.
7) Take good care of yourself! This is one of the most stressful things I have ever done, (and I've seen a lot.) Make sure you take time for yourself and have support throughout this process.