On May 3, 2011, parents of children with food allergies came to TheMotherhood to swap ideas and learn how to advocate for a safe school environment for their kids.
The session was hosted by Lori Sandler, founder of Divvies Bakery and author of The Divvies Bakery Cookbook; Gina Clowes, founder of Allergy Moms, www.allergymoms.com; Barbara Rosenstein from the Food Allergy Initiative, www.faiusa.org (the world’s largest private source of funding for food allergy research); and Maria Acebal from The Food Allergy and Anaphylaxis Network, www.foodallergy.org.
Gina Clowes started the discussion by sharing her most popular download, which parents can print and share with teachers. It is called “10 Things Children with Food Allergies Want You to Know”: http://www.allergymoms.com/uploads/newsletters/everychildwish.html
“I have a whole eBook that takes it even further and can help to educate caregivers,” Gina commented, sharing the link: http://www.allergymoms.com/10things.html
Advocating a safe environment for your child
“Communication with the school is so important. Especially if it is a large school,” said Felicia Carter, Go Graham Go. “Keep in mind that most states are facing hug budget cuts which means bigger class sizes. So, now it is more important than ever!”
Lori Sandler suggested, “Approach the school in the spring before the next school year begins. Introduce yourself, schedule meetings with the principal, teachers and school nurse. Introduce your child to his teacher before the school year begins so they may build a rapport.”
Maria Acebal, The Food Allergy and Anaphylaxis Network, added that the key to her daughter’s “continued safety and my sanity has been annual staff training. The Safe@School presentation for educators available through the FAAN website is what I have used for years at my daughter’s own school.” Here is the website: www.foodallergy.org
“This is a great suggestion. A lot of parents don’t realize that when it comes to their child’s allergies, THEY are the experts and can use that knowledge to help the school,” agreed Elizabeth Thielke, A Mommy Story. “Offer to help with training, offer to write up a guide to your child’s allergies, or come speak to your child’s class about food allergies. Be not only an advocate but an educator as well – for schools that have limited budgets and limited resources, offering yourself as a resource could be a huge help to them.”
And for those moments when you encounter unsympathetic administrators and people who don’t understand the seriousness of your child’s food allergy, “I’d recommend the book From Emotions to Advocacy by Pete Wright and that you look at the website www.wrightslaw.com,” said Gina Clowes, Allergy Moms.
Libby, The Allergic Kid, added that winning a safe environment for your child at school might require “polite persistence. Keep moving up the ladder. When I run into a brick wall, I ask, who do I need to see to have this approved? Or, do you have any suggestions for me when I speak to so-and-so (next person up) in order to have this approved?”
“We had our allergist write a letter stating the need for accommodations for our son to safely go to school,” said Nicole Smith. “This began the 504 Plan discussions. He’s in high school now and still has a 504 Plan.”
Putting a 504 plan in place
What is a 504 plan?
“Section 504 of the Rehabilitation Act of 1973, which is a anti-discrimination law,” explained Thanita. “A student with a disability like food allergies can obtain a 504 plan to keep the child included and have equal access to Free & Appropriate Public Education (FAPE) in the least restrictive environment the same as their non-disabled peers.”
“Schools have a tendency to think about 504 just for physical or mental disabilities,” said Colette Martin, but “a 504 plan helps students who have things like allergies, asthma, diabetes and more,” said co-host Felicia Carter. “It is a plan that follows them through school and provides accommodations where they are needed.”
If you are not familiar with the details of 504 plans, “go to the U.S. Department of Education website and download the definition for a 504. You will most likely be able to qualify your child after reading this document,” advised Cheryl.
Maria Acebal noted, “Any school, public or private, that receives federal funding (i.e., a lunch or milk program) is subject to Section 504 of the Rehabilitation Act of 1973. And, for private schools not covered by 504, the Americans with Disabilities Act provides similar protections. (Religious private schools are exempt.)”
And there is a distinction between Individual Health Plans (or Individual Emergency Plans) and a 504 plan. “We use our IHP – Individual Health Plan – to outline emergency procedures should our son have a reaction,” said Nicole Smith. “The 504 Plan outlines accommodations.”
“Other adults can be trained to care for your child,” noted Gina Clowes. “Yes, a full time nurse is wonderful to have, but your child can still be kept safe. A solid 504 plan or other written plan with a number of trained adults is a good place to start. Studies show that when caregivers are trained to avoid, recognize and treat allergic reactions, the frequency and severity of reactions decreases.”
Gina added, “Severe allergies need to be taken seriously. It’s an invisible disease (mostly). Our kids look healthy, and you’d never know that cross contamination or breathing in the wrong food could cause this healthy-looking child serious harm.”
Here are a few more resources on 504:
Parent Advocacy Brief: Very Important Information on Section 504 and ADA
Compliance to Section 504 is not optional
Section 504 FAQ from the Office of Civil Rights
Devising a plan for your child at school
Maria Acebal, who is FAAN’s General Counsel, offers these suggestions to consider when devising a good school plan:
What is a food allergy?
What causes an allergic reaction?
What are some of the symptoms of an allergic reaction?
What is the recommended treatment?
What is on my child’s Food Allergy Action Plan?
“Even if your state doesn’t have food allergy school guidelines, it can be helpful to use other states’ guidelines as a resource,” added Barbara Rosenstein, Food Allergy Initiative. “These are based on best practices developed by experts.” http://www.faiusa.org/page.aspx?pid=407
Allergy safety: nut-free schools
“Schools that claim to be nut-free … what are we looking at?” asked Vish. “Do they just not serve nuts? What happens if a child bring PBJ sandwich for lunch? Is the lunch sent back home? My question really is – what do they promise?”
“I assume the school will have to decide if it’s just visible nuts or includes items that could contain nuts (cross contaminated foods), etc.,” answered Thanita.
“It depends. My son went to a ‘nut-free’ preschool and got a full-sized Snickers bar in a treat bag once. Human error,” added Gina Clowes. “I like to start with a really solid written accommodation plan (my preference is a Section 504 plan) and then move on to other school-wide policies.”
EBrady reminded everyone that “risk reduction in ANY way never means risk FREE. However . . . risk reduction and improving safety with improved outcome ought to be the goal!”
“I think there are many valid approaches to food allergy safety, and restricting foods in classrooms or schools is one of them,” said Maria Acebal.
Agreed Gina Clowes, “I think about 20% of U.S. schools are peanut free, but you do not have to have a peanut [or other allergen] free school to keep your child safe!”
Allergy safety: keeping Epi-pens nearby
If your child attends a school where there is a chance he or she could be exposed to their allergen, you should insist that an Epi-pen be kept nearby and accessible.
Many schools will keep Epi-pens in a locked cabinet, but “there are other, valid alternatives to keeping other students away from medications without a locked cabinet,” said Maria Acebal. “If you are told that it is ‘regulations,’ ask for a copy of the exact regulation being referenced.”
“I am in Chicago, and we were told that the Epis were only stored in the office and it was non-negotiable,” said Jan. “It was also non-negotiable to me that the Epis/inhalers [needed to be] in the classroom – so I first raised a stink at the nurse level, then the principal level. After I told them that I would take it to Chicago Public School board – they suddenly changed their mind. Push forward until you get what is best for your child.”
For older children, “Most states allow children to self-carry the epinephrine autoinjectors (Epi-Pens) if they can self-administer,” said Gina Clowes. “There are a handful of states that have not passed a ‘self-carry’ law yet. However, even in these states, the district can allow the child to self-carry.”
Here is a listing of all the states and the relevant laws pertaining to self-carry: http://www.foodallergy.org/page/legislation
Helping nonbelievers understand allergies
“We are our children’s greatest champions when it comes to their emotional and physical safety,” said Lori Sandler. That means overcoming administrative obstacles and educating those who don’t believe in the dangers of food allergies.
“One important thing to remember is all this is a PROCESS,” said Maria Acebal. “One conversation won’t do it. It takes multiple calm, confident communications.”
As an educational tool, Maria also suggested showing “the video produced by FAI called ‘Someday.’ It’s on YouTube. It has children talking about what it’s like to have food allergies.”
Michelle compares peanuts to germs to get the idea of food allergies across to those who don’t “get” it. “You can’t see them, but if my kid touches the ‘germ,’ invisible peanut residue, he could become sick. I see lots of light bulbs go off,” she said. “People understand the invisible germ and how it can make them sick, and they know that they should wash their hands and be mindful of them. Now they can be aware that food can be a problem for some people” in a similar way.
You can also team up with other parents who have kids with food allergies to unify your efforts.
“I started a Food Allergy Group at our school a few years ago. We were able to put several policies in place to help our kids,” said Cheryl. “First of all, we implemented the ‘blue form.’ Any food coming into the school for parties, birthdays or holidays must be written on this form and sent into the school at least three days in advance so that food allergic kids’ parents can provide a similar snack. If it is not on the blue form, it is not allowed in the school. We have also limited the amount of food coming in – holiday parties can have one healthy snack and one not so healthy snack. Teachers are not allowed to give out food in the classroom to prevent exclusion of food allergic kids.”
Starting kindergarten with food allergies
It can be especially difficult to send a food allergic child to school for the first time – in kindergarten or Pre-K. There are steps you can take to increase safety at school for young children with food allergies.
“I believe it’s never too early to teach a child to advocate for their food allergies,” said Jenny Kales, Nut Free Mom. “I’ve found that it really helps kids to stay safe if they can speak up and ask questions, ask for help.”
Agreed Elizabeth Thielke, A Mommy Story, “My daughter is only 6, but she’s beginning to understand that certain foods make her sick. By constantly talking to her about which foods aren’t good for her, she’s learning how to recognize them and occasionally even remembers to refuse them.”
“Teach your child to recognize symptoms of allergic reactions,” added Lori Sandler. “It is critical for children to know the symptoms of mild and severe allergic reactions, and have key people they feel comfortable turning to (including school nurses, teachers, coaches and friends), without hesitation.”
“I have info here that you might be interested in to help you with kindergarten. It is scary to start the process, but you can do it!” said Nicole Smith. http://www.allergicchild.com/foodallergyandschools.htm
10 Things to know about food allergies in the classroom
5 Tips for food allergies at school
Protecting your child from food allergies at preschool
Helping adults “GET” that food allergies are a matter of life and death
Feeling left out
In addition to physical health safety, you should keep your child’s emotional health in mind. Their food allergies may cause them to feel excluded and isolated.
“My son hated the idea of a separate table,” said Libby, referring to the nut-free cafeteria table that some schools set aside for kids with allergies. “He has a designated spot at the end of his class’s table that is wiped down before he sits there. Sometimes he’s at the end by himself, but if his friends don’t have peanut butter or milk, they sit next to him.”
“I was concerned about the nut-free table too,” said Jodi Grundig, Mom’s Favorite Stuff, “but in my daughter’s kindergarten, it’s become a very close-knit group of friends and I feel comfortable sending my daughter to their houses for playdates because their parents are vigilant too.”
Apart from lunch, when snacks are offered in the classroom, you can ask to be alerted ahead of time and prepare a similar allergen-free snack for your child. It’s even better to avoid food in the classroom altogether when possible.
“Here’s a site that offers some helpful non-food ideas for school events, Halloween, etc.,” said Barbara Rosenstein. http://greenhalloween.org/content.php?page=treats#treats
“I wrote this piece in Newsweek’s “My Turn” column a few years ago,” said Becki. “Yeah, I plan to hand it to my daughter’s teacher next year…and every year.” http://www.newsweek.com/2008/05/31/a-plea-for-my-daughter.html
“We parents of children with food allergies need to be reasonable ourselves!” said Allergic Child. “Check out this article I wrote about our experience.” http://www.allergicchild.com/reasonableaccommodations.html
Thanks to our wonderful hosts:
Lori Sandler, Divvies
Gina Clowes, Allergy Moms
Barbara Rosenstein, Food Allergy Initiative
Maria Acebal, The Food Allergy and Anaphylaxis Network
And fabulous co-hosts:
Elizabeth Thielke, A Mommy Story
Felicia Carter, Go Graham Go
Libby, The Allergic Kid
Jodi Grundig, Mom’s Favorite Stuff
See the original Talk here: http://tmotherhood.wpengine.com/talk/show/id/62181