by Amanda Painter, South Chapter Coordinator
I wrote before about food allergy moms making a positive impact with the companies they founded. You can read that blog here. For this blog post, I want to highlight young people who are making a positive impact (and also happen to have food allergies). These teens have gone above and beyond everyday management of their food allergies and developed resources that benefit the food allergy community.
First, I would like to share with you, Morgan Smith. Morgan (currently a college sophomore) has written three e-books:Traveling Tips for Teens with Food Allergies, The College Survival Guide for Teens with Food Allergies and Morgan's Corner Collection: A History of Living with Food Allergies. Each of these books is a must read!
Traveling Tips for Teens with Food Allergies provides step-by-step guidance for trip preparation that empowers teens to be in control. The planning tips in this book include everything from choosing an airline to outlining where to find meals. Morgan shares ideas to help ease anxiety about traveling, and checklists to make the entire process thorough and seamless. Morgan also shares snapshots of his travels; the successful parts, and the ones where he had to troubleshoot on his own due to a change in plans.
The College Survival Guide for Teens with Food Allergies is an absolute must for teens heading to college soon (and a great resource for their parents too). College selection is one of the most important choices an individual makes in their life. When you add managing food allergies to the mix, there are many more issues and items to contemplate. Morgan shares the steps he took to decide on the college that was right for him. This survival guide suggests what to consider when examining housing and kitchen accessibility, what accommodations to request and the process for doing so.
Morgan stresses the importance of personal preparedness and covers social situations that need consideration, including dating, roommates and parties. The book gives us a glimpse into his day-to-day life; that is of great importance for both teens and their parents. It will help assist in discussions and preparedness on how to manage certain situations.
Parents will be glad to know that Morgan also reminds the readers that they need to check in with their parents!
Morgan's Corner Collection: A History of Living with Food Allergies is a documentation of Morgan's journey. In these pages, you will find Morgan's perspective and advice on managing food allergies from elementary school to traveling abroad in college. Topics range from dealing with teasing/bullying to managing holidays and staying safe at school.
Morgan is clearly living and thriving while managing food allergies. He is a remarkable example to others on how food allergies shouldn't hold you back. With proper planning and preparedness, you can follow your dreams and experience all that life has to offer.
You can purchase Morgan's e-book and read more about him on his website: Morgan's New Corner.
I can't write about Morgan without mentioning his parents. Nicole and Robert Smith set an excellent example for Morgan (and his sister). The Smiths are creators of AllergicChild.com. I encourage you to visit this website. It is an exceptional resource for those managing food allergies.
Next on the list is Cyrus Moassesi. Cyrus (currently a college-bound high school senior) is the creator of Food Allergy IceBreaker. This site provides talking points (and many other resources) for individuals that do not have food allergies but are affected by them. He covers many situations from play dates with little ones to peer-to-peer teen conversations. It can be challenging and awkward to ask others about their food allergies. By using these icebreaker suggestions, individuals show that they are interested in learning how to support someone with food allergies. Cyrus has many other accomplishments for his young age. You can read more about those on his website.
I also must add a couple of lines about Cyrus' mother, Caroline Moassesi. Caroline is a fierce food allergy and asthma advocate, setting a fantastic example not only for Cyrus but other advocates like me. Her passion is inspiring. I recommend checking out her Grateful Foodie blog.
My last must-read resource developed by a teenager is the book: Living with Life-Threatening Food Allergies: A Teenager's Guide to Doing it Well. Elisa Stavola wrote her book while in high school. This guidebook is full of practical advice on handling everything high school has to offer. From dating to sports, Elisa shares her tips and personal experiences, encouraging readers to be in control of their food allergy management. You can purchase her book on Amazon here.
Each of these individuals is an impressive example of how to make a positive impact. They are inspiring a community with the resources they share. I encourage you to check out their resources to assist you or those you know in the food allergy journey.
These individuals also set a wonderful example of self-management and self-advocacy skills. I want to take this time to emphasize how vital it is to teach children at a young age to self-manage and self-advocate. Building these skills in children at an early age will allow a successful high-school and college experience (and the rest of their lives). You will not always be with your child to navigate their journey for them. Read more here about teaching self-management.
I asked Morgan Smith to share a few words with our readers about his journey. This is what he had to share:
"Food allergies are entirely manageable. It's a mix of planning and self-advocacy: planning will help set-up the structures you need to succeed at school, on trips, and elsewhere in life, but self-advocacy will assure that you will always remain safe. It's important to never be afraid to speak up about your food allergies and voice your concerns with friends and strangers alike. People are a lot nicer and accommodating than you may think! Growing up with food allergies is just a long journey to develop these skills and, to me, life with food allergies is no different than life with brown hair or blue eyes - it's a fact of life. It's always better to have fun in the meantime!"
Again, excellent advice. Be sure your child (or yourself) is still having fun while confidently managing their food allergies, and utilize the above resources to assist in your journey!
Disclaimer: FACET has not been paid to recommend these resources.
by Amanda Painter, South Chapter Coordinator
Peanut-free table. Allergen-free table.
Are these the best solutions for cafeteria seating?
The motivation for these special tables is that if allergens aren’t allowed at the table, we remove the risk. Sounds great, right? This situation actually raises more questions for me.
The terms peanut-free or allergy-free can be vague.
What does peanut-free really mean? No peanut butter? What about granola bars? Does anyone know if that eggroll has peanut sauce in it? How about the chicken tenders that may have been fried in peanut oil? What about the muffin that doesn’t contain peanuts but has a chance of cross contact with peanuts? Can a table be declared “peanut free” if all of these possibilities (and more) aren’t taken into account?
The situation becomes even more complicated for an “allergy free” table. If students have different allergies, can an entire table of students really have lunches that are all “safe”? Think about this scenario as an example: 7 students in one lunch period have food allergies. Nathan, Isaac, and Rachel are allergic to peanuts. Suzy is allergic to milk and peanuts. Johnny is allergic egg. Tim can’t have peanut, tree nut and poppy seeds. Emily’s list is soy, fish and tree nuts. Can an “allergy-free” table truly claim to be free from all of these allergens? Not likely. It would be close to impossible for all of these students to have meals that are not only safe for themselves but for the other students as well.
When working on lunch accommodations, I think it’s best to have the goal of reducing risk. It is not possible to remove all risk. Risk is a part of life for those with food allergies. Reducing risk is an attainable and realistic goal.
Alternatives to the peanut-free table
The riskiest items are the messiest ones. Strategic seating is the best way to reduce the risk of sticky peanut butter coming in contact with the child with peanut allergies.
Consider these alternative solutions:
Alternatives to the allergy-free table
A child can be allergic to any food. We need to be sure that we don’t overlook any of the food allergies that can be just as life threatening as a peanut allergy.
One of the most difficult to manage in schools is a milk allergy. Milk is everywhere. It’s spillable out of a carton, spreadable from yogurt and ice cream … then there is the cheese dust that sticks to little fingers after eating so many popular foods for kids. Also, what about the child with multiple allergies? The more foods added to the allergen list reduce the chance of a peer also having a “safe” lunch.
Here are some suggestions to reduce the risk for these children:
Again, lunch accommodations need to be specific to the individual child’s needs and situation. One of these solutions may work, or a combination of them may need to be implemented. Whatever strategy is chosen, the important part is that all of these solutions fully integrate the child. While some students may not get to sit next to their best friend, everyone has the same opportunity to socialize at lunch. Inclusion is necessary for all children.
All of the above solutions are focused on the seating, but seating is only one part of cafeteria accommodations. There is also a great need for supervision from school staff, especially for younger children. Be sure your child’s accommodation plan specifically states what is necessary for proper supervision. Training that includes how to recognize and treat a reaction are essential. Immediate access to epinephrine is vital.
Please don’t overlook how the table is cleaned. It’s very important that a spilled allergen isn’t cleaned with a rag and then spread to all the other tables by cleaning with the same rag. A disposable placemat can also add another layer of protection.
Peer awareness also plays a significant role in regard to safety in the cafeteria. All students need to know how they can support their peers. Included in this should be no food sharing, keep your hands to yourself, and don’t touch other people’s food.
Lastly, and in my opinion most importantly, children with food allergies need to learn how to safely and comfortably sit near someone who is eating their allergens. This is difficult. Some parents may not like considering it. I am a huge advocate for teaching our children self-management skills starting at a young age. Children with food allergies always need to be aware of food around them. They should not let their guard down just because they are sitting at a certain table in the cafeteria. This false sense of security can have dangerous consequences. Work with your child to only eat food that you have approved and stay focused on the food in front of them. Empower them to use their voice by speaking up if someone isn’t keeping their hands to themselves and always questioning something if they are unsure about it. Build their confidence. Encourage this confidence to lead their actions, instead of fear.
Do you have other suggestions that work well for your child? What does your school do to provide a safe eating environment for students with food allergies?
For more advice on school accommodations read my Back to School Prep Blog.
by Amanda Painter, South Chapter Coordinator
Back-to-school can be filled with dread and anxiety for a family managing food allergies. My advice is to prepare well for the situation in hopes of removing as much anxiety as possible.
As you prepare for another school year, communication is key. You must communicate well with the school. You must also communicate well with your child.
The first step is to notify the school, in writing, of your child’s diagnosis. In your letter or email to the school, I recommend that you share an Emergency Care Plan completed by your allergist, ask what documents and forms the school needs from you and your child’s medical care team, and request a meeting to discuss the information in person. This will help everyone move forward with creating an accommodation plan once eligibility has been approved. It is also helpful if your allergist is willing to write a letter regarding your child’s diagnosis and include what steps are necessary to keep your child safe at school (i.e. must have epinephrine accessible at all times, allergen free classroom, etc.).
Next, work with your child’s team at school to create an appropriate written plan for accommodations. I recommend a 504 plan since it is a legally binding document that protects your child’s rights at school. Here is a link to one of my favorite blogs about 504 plans. I also have additional links with 504 information at the end.
What accommodations are appropriate? I advise starting with the CDC’s Guidelines. You can access the full document here (it’s quite long). Here is a 2-page list of accommodations that FARE created of the CDC recommendations. I find this list to be particularly helpful since it breaks it down into different locations in the school setting – classroom, cafeteria, transportation, etc.
Ask your child’s teacher to walk you through the day at school. Where will your child encounter food? Who is in charge of medication? Other than the teacher, who is responsible for your child’s care throughout the school day? You should pay special attention to transition times between activities/classrooms and schedule changes.
Items to pay particular attention to:
Location of epinephrine- Keep epinephrine with your child. It needs to be accessible at all times. If it is in a box in an office, how accessible is it? Minutes make a difference when treating anaphylaxis. Also, with every accommodation made, you need to remember what you are teaching your child about self-management. If you allow your child’s epinephrine auto-injector to be stored in the school office, how is that teaching your child to know he or she must always have it on hand? When it comes time for them to self-carry, will they understand the importance of keeping it with him or her? We have to be sure we aren’t sending our kids mixed messages.
Staff training- Your child needs to always be in the care of someone that is trained and willing to treat him or her with epinephrine. (This also applies to transportation to and from school as well as transportation during field trips). Your child’s Emergency Care Plan needs to be shared with the school’s care team. The ECP will provide them with concrete instructions on when and how to treat. Reactions are not a time for school staff to be left making a judgment call. Providing these steps in the ECP will save important time during a reaction.
Who is providing food?
Just like every other child at school, your child can eat in the cafeteria. School lunches are overseen by the USDA, and therefore public schools must make dietary accommodations.
If you choose to send your child’s lunch, one recommendation I have is to use an easy open lunch box that your child won’t need much help with. The less hands helping with lunch, the less likely a helper could contaminate your child’s lunch. My daughter uses a PlanetBox and it works wonderfully.
When it comes to lunch seating it’s important to have good supervision and make sure that your child is not isolated. Strategies to reduce risk need to be addressed. This will very much depend on your child’s allergens. Read more about cafeteria seating here.
You need to decide if you will allow your child to eat snacks provided by others (with the teacher being responsible for reading labels and knowing what brands are safe) or if you will be the only person providing food for your child.
Personally, my consent is required on everything before it can be fed to my child. I feel that it’s important that teachers not be put in a position to make medical decisions. They need clear, specific instructions. For example, a teacher should not have to decide what is or isn’t considered baked egg or distinguish between different varieties of nuts.
Parties & Celebrations
You need to come up with a plan that keeps your child safe AND included. You can read my thoughts on food in the classroom here.
Classrooms are for learning. Cafeterias are for eating. Your child is not being given every opportunity for success if they have anxiety and stress about the food that is ground into the carpet under the desk in front of them. This is a distraction from their education. Advocate for your child to have a supportive learning environment and have an allergen free classroom. (This is also recommended by the CDC).
Other items to be sure you address:
Are all substitutes trained? How will they be notified of your child’s specific accommodations? Will a TA that is properly trained on your child’s Emergency Care Plan be present at all times?
If you can’t attend, your child needs to be with a staff member that is trained to care for them (not a chaperoning parent who isn’t properly trained). Also, request that all field trips are assessed for safety and inclusion beforehand, and adjustments made, if necessary.
Does your child’s school sell food for a fundraiser? Your child should be exempt from this. Let me be blunt - it’s incredibly inappropriate for the school (or sports team, church, etc.) to ask a child to sell something that could kill them. If your family does choose to participate in such a fundraiser, talk with the school administration to ensure that the prize incentives are appropriate for your child.
Hand sanitizer does NOT remove food protein. Hands need to be washed or wiped with a wet wipe. Ideally classmates will do this upon entering the classroom in the morning and after lunch.
Your child’s accommodation plan needs to carry over to any other school activity. Your child has equal right to also be included in these activities, just like in the classroom.
Water fountains can have lots of food residue from the many hands and mouths that come in contact with them everyday. I recommend that your child carry his or her own water bottle and not risk the possible contact from the water fountain.
What if your child had to stay at school due to an emergency? (Think unexpected ice storm). What if your child dropped their lunch box and all the contents spilled on the floor? Is there enough safe food to sustain your child for a day? I recommend keeping a box of shelf stable food in the nurse’s office or your child’s classroom for these emergencies.
Communicating with your child
A child managing food allergies needs “food rules” or “safety rules”. Here are some suggestions:
Children, especially young ones, put their hands and other objects in their mouths. This can create additional opportunity for accidental ingestion. Work with your child on why it’s important to keep hands out of mouths and the importance of hand washing. Also, ask your child about school - specifically lunch, snack or social times. This will give them the opportunity to talk about anything that may not be going well or is upsetting to them.
Include your child as an active part of his or her plan at school. Explain that your child’s decisions and behaviors are a part of the prevention plan, but that others are also working to protect him or her. Tell your child what accommodations are in place to promote a safe environment. Show your child that his or her teacher is prepared with epinephrine, if needed.
Remember, open communication is key for keeping your child safe and included at school. Do your best to create a relationship of mutual respect with your child’s team at school. Say thank you when things go well and when accommodations are made for your child. When problems arise, document the issues and take them to the appropriate person to ensure the issue is corrected. Don’t hesitate to ask questions or speak up if you aren’t comfortable with something.
Sending a child with food allergies to school is one of the hardest things we do as parents. I also feel that it is one of the best things we can do for them. We must teach our children self-management skills. We also must teach them that the world isn’t allergy free. One day, they will be adults navigating an allergen-filled world without us planning their every move (and meal). We need to begin building their confidence to manage the diagnosis by empowering them in age appropriate ways.
With proper prevention and preparedness, our children are free to learn, grow and experience everything that life (and school) has to offer.
Links to additional information:
FAACT's Civil Rights Advocacy Resource Center
Thriving with Food Allergies, How to Obtain a 504 Plan
Questions & Answers on the ADA Amendments Act of 2008 for Students with Disabilities
The Civil Rights of Students with Hidden Disabilities Under Section 504 of the Rehabilitation Act of 1973
Guidelines for Managing Life-Threatening Food Allergies in Tennessee Schools
by Amanda Painter, South Chapter Coordinator
Every cupcake, cookie and piece of candy brought into a classroom has the potential to either place kids with food allergies at risk of a reaction or exclude them from an activity that every other child in the classroom gets to participate in. Why are children intentionally excluded or having their health put at risk? Many will say, “This is how we’ve always done it.” Why is that valid reason?
Times change, things change. There was a time when public schools didn't provide accommodations for children with learning disabilities, or allow children in wheel chairs access to all schoolrooms and functions. Since 1990, great strides have been made with accommodations thanks to the American Disabilities Act. Yet, this type of exclusion happens to children with food allergies today.
Yes, kids love to celebrate (so do adults!), but why does the reward for a job well done or celebration of a birthday have to be a dessert? Does this fun really need to be based on food? Removing food doesn’t remove the recognition or the party.
So how do we change this? I suggest taking a step back to look at where the true focus should be and what is to be accomplished with each celebration and reward.
A child’s birthday celebration:
Once we refocus on the intention of the reward or party then we can understand how to best accomplish the goal, in a fun way, that doesn’t involve food. Create special crafts or artwork for the children to take home as keepsakes. Have group activities or games that get the kids up and moving. Provide a unique educational opportunity that makes learning extra fun. Create memories, move the body, and stimulate the brain. Instead of encouraging unhealthy relationships with food, set the example that food is not the focus of fun. Promote compassion, inclusion and respect for other’s differences.
What about snack time? Especially for younger children, there will be times when a snack is needed while at school. One simple suggestion, which will also help ensure the safety of children with food allergies, is to snack in the cafeteria. The cafeteria is for eating; the classroom is for learning.
For the parents of kids with food allergies that are frustrated with food in the classroom, be sure to work with your child’s school to create a plan ahead of time. I advise seeking a Section 504 plan for your child, which is part of Federal ADA law that promises equal access and nondiscrimination for individuals. Children with life-threatening food allergies may medically qualify for a 504 plan. This plan will identify what accommodations will be made to keep your child safe AND included. Remember, inclusion isn’t about restrictions; it's about allowing everyone to participate safely. Having a safe box of treats that are different than what the other kids eat at a celebration is NOT full inclusion. I encourage you to read more about 504 plans from the experts at Allergy Law Project and Wrightslaw to help you create a plan specific to your child’s needs.
Parents, as you request food free celebrations, I recommend that you create a list of creative ideas to take to your child’s teachers and activity leaders. Requests for food-free celebrations will be better received if you suggest alternatives.
To the teachers and other activity leaders (coaches, Sunday school teachers, troop leaders, etc.): think outside the box when it comes to celebrations. There are so many alternatives. Be the adult that took the time to include every child. I guarantee that it will leave a lasting impression on the child, and a much better one than if he/she was consistently excluded while in your care.
Rather than focusing on food, why don’t we think outside the box and focus on wellness and inclusion.
Share with us: what are your favorite ideas for food free fun in the classroom?
Here are a few food free suggestions from some of our blog readers:
· Have classmates make cards for the birthday girl/boy and make a book out of them.
· Treasure hunt around the classroom.
· Have a parent come read to the class and donate the book to the classroom.
· Bring a special item from home for show and tell.
· Dance party
· Holiday themed parade
· Perform skits
· Have a bubble party outside
· Pajama or hat day
· Nonfood treats: glow sticks, stickers, matchbox cars, bubbles, pencils, erasers.
For more suggestions on food free celebrations, incentives and fundraising, check out FACET’s list of food free fun.
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