Open House Night at the Local Grade School

I volunteered/(was asked by the PTA) to host my allergy booth from the fair at the local grade schools Open House Night. I was both excited and nervous. Yes, I had hosted this same booth in the past but now I was going to be speaking to children between the ages of 4 and 10 and their parents. I wanted to be sure that I did not say anything that would frighten the children, but get the point across to the parents.

I arrived for setup at five. When I checked in with the PTA to see were to set up they informed me that they had me on the other half of the Healthy Eating Booth. As she put it, "We thought the two of you would go together." After introducing myself to Patty from the UOI Extension I quickly began setting up my items.

So once I took a moment to look around I noticed something that told me we have a very long way to go with food allergies in this school system. There was about a total of 10 booths lining the path around the gym, and at nearly every booth there was so form of food item.

The Bank had bags of popcorn, Kiwanis was passing out smarties, thirty-one bags was passing out dumb-dumbs, the Boy Scouts were passing out mixed candy, bubby gum and Frisbee's, the Healthy Eating booth was given out packs of pretzels, and the school itself was passing out ice cream cups in your choice of chocolate, vanilla, or strawberry.

But the booth that scared me the most out of everyone else was the Girl Scouts. I watched from across the room as she opened boxes of Girl Scout cookies and placed them all on a platter together to be picked over by children and their parents. Then I noticed the large fish bowl of candy on their table as well. I believe it was a prize of some sort, but it was full of bags of candy some that I could see were m & m's and Skittles and just so many more. At the end of the event they walked around with the platter trying to get rid of the rest of the remaining cookies.

Sometimes I forget that I was a very good pre-K teacher in my past. I related to the kids well, explaining that some people can be allergic to different foods and can get itchy, bumpy, swelling and that we want to keep our friends safe by finding a teacher or parent to help get them their medicine and help.

The kids were great, but the parents were my main focus. I wanted them to under stand that just because your child doesn't have an allergy they might have a friend that does and if they should be over and have a reaction we need to know what to look out for and what to do in an emergency. I relayed to them it would be helpful for birthdays or sleepovers to know what to do. I passed out quite a few of my informational pamphlet's.

And I had one mom who was just starting her food allergy journey with her son and she wanted to know more. So we talked and shared information. Just like the people at the fair, I had a number who wanted to share their food allergy stories with me, I love to hear how other people work through their food allergies.

I'm calling this years event a success in the sense that I got my foot in the door and I made an impression. I am hoping that through my continued work with the PTA to do more in the future.

Our First Big Trip After Diagonass

Well we made it, we drove from Chicago to Florida and back and did not have one food allergy reaction. We did however have one food incident.


As planed we attended the Georgia Aquarium in Atlanta. The kids had a great time. They sprang from one exhibit to the next.

We were there on a Thursday during their fall hours, there were no real lines to speak of. Since I had pre-ordered our tickets we just walked in, after a brief bag check. However, in the parking garage, my husband failed to scan our parking ticked and took one instead, so we actually paid for parking twice.

We had decided to not eat at the aquarium, in part because of our schedule and I really didn't care for their pre-pay options.

We made it all the way to Florida without incident, and my Grandmother was true to her word, she had put everything up high in the cupboard and had told everyone no nuts at all. She had even pulled out a box of cookies she had picked up and asked it they were ok to give to the kids. My husband read the box and when he pointed out that they were made in a factory with peanut products, she hid them away before the kids could see them.

Things were great until our second morning. My husband and I  were up early and were enjoying a pot of coffee at the kitchen counter. When my Grandmother walked in she said she needed to eat something and take her pills. She put some bread in the toaster, pored a cup of coffee and before I realized what was happening she was spreading peanut butter over her toast. According to my husband I had a face of shock and pure panic. When my Grandmother looked up halfway through her toast she saw it too. She wiped her mouth, wrapped the toast in a napkin, buried it in the trash and proceeded to wash her hands, the knife and her lips with dish soap and a paper towel. She refused to touch my daughter until she had showered.
Later she apologized, she was so used to having toast and peanut butter every morning for breakfast she forgot herself.

The entire rest of the trip was completely without incident, and we had a wonderful time.
Were even thinking about doing it again in the future.

Federal and Illinois Food Allergy Laws

There are a number of resources that can help you protect your food allergic child in school and
beyond. There are three federal laws that address kids with food allergies. They are:

1.) Section 504 of the Rehabilitation Act of 1973
          . This is where the phrase “504 Plan” comes from. A public school that receives federal money can’t discriminate against a child with a disability. Every child is entitled to a free and appropriate public education.

• Under this law, a food allergy may be a disability( the school has to determine it) because a severe reaction can interfere with a major life activity- such as breathing.
• The U.S. Department of Education Office for Civil Rights enforces this law.
• A “504 Plan” is simply a written plan that the food allergy parents and the school agree on to keep the child safe. It becomes a legal document.
  1. If a child needs services, then that should be provided in the 504 Plan.
  2. The more specific the 504 Plan the better.
  3. The 504 Plan should explain what everyone agrees upon for the child.
  4. The 504 Plan can set out the responsibilities of everyone involved from the child, to the teacher, nurse, parent, cook, bus driver etc.
  5. A Doctor’s order can become part of the 504 Plan.
  6. Any document the parties deem relevant can become part of the 504 Plan.
  7. A Food Allergy Action Plan can become part of the 504 Plan. It tells everyone what to do if there is a food allergy reaction. Sample Food Allergy Action Plans are on the Home page.
• If a parent disagrees with the approach of the 504 Plan then the parent can ask the school for a due process hearing. It must be an impartial hearing.
• If the 504 Plan is not followed, then the Office for Civil Rights (OCR) can help. The bottom line is, however; the OCR wants everyone to work as a team.
• The Chicago Office number is 312-886-8434

2.) Title II and III of The Americans with Disabilities Act of 1990

• It prohibits discrimination on the basis of disability by public entities.
• It prohibits discrimination on the basis of disability in the services, programs, or activities of   all State and local governments. (Like Park District programs)
• It even applies to such programs that DO NOT receive federal money
• The Office for Civil Rights also enforces this law. For more information see: www.ed.gov/about/offices/list/ocr/504faq.html or call the Chicago Office number at 312-886-8434
• This act protects children from discrimination whether or not the institution where the child is receives federal money. One place that it applies is to private schools.

3.) The 2008 Amendments to the ADA
          The Amendments impact food allergies because the Amendments stated that if mitigating measures helped your condition, that did not indicate that you did not have a disability. For example, if you have asthma and you avoid triggers or use an inhaler which helps, you still have asthma and you still might need an accommodation. Likewise with food allergies: one strictly avoids the food and if there’s a reaction one takes an anti-histamine or uses an epinephrine auto-injector. Those are mitigating measures but they don’t change the fact that one has a food allergy.

Also if your school received ANY money from the federal government, then it has to comply with the United States Department of Agriculture Guidelines (USDA). The Guidelines require, that if your child cannot eat what is being served, then the school needs to make a substitution, that is of nutritional equivalent to what is being served. But, you need to fill out a form. USDA Doc .

The CDC has developed Guideline for the Management of Food Allergies in Schools and Early Care and Education Programs, However this guidelines are Voluntary. CDC Guidelines

There are also a number of Illinois State Laws that will help protect your food allergic child. The state of Illinois also has Guidelines for Managing Life-threating Food Allergies in Illinois Schools, IL Food Allergy Guidelines.

I understand that reading bills is not an easy task for someone who did not have to study law while in school, and for those of us who did it's still tough, but it is the best way to get the information that we need.

Illinois House Bill 3741, states that a school, whether public or nonpublic, must permit the self-administration of medication by a pupil with asthma or the use of an epinephrine auto-injector by a pupil, provided that the parents or guardians provide the school written authorization for self administration. HB 3741 also states that a school may authorize a student or person authorized under the students individualized health care action plan to administer epinephrine.

HB5892, Amends the School Code. Provides for the administration of undesignated epinephrine auto-injectors by a pupil, school nurse, and trained personnel. Limits liability for the administration of undesignated epinephrine auto-injectors by a school nurse or trained personnel. Requires a school to permit the self-administration and self-carry of asthma medication by a pupil with asthma. Provides that prior to the administration of an undesignated epinephrine auto-injector, trained personnel must submit to his or her school's administration proof of completion of a training curriculum to recognize and respond to anaphylaxis. Requires training to be completed annually and sets forth training curriculum guidelines. Provides that within 3 days of the administration of epinephrine by a school nurse, trained personnel, or a student at a school or school-sponsored activity, the school must report to the Board certain information, which the Board will then use in its report to the General Assembly identifying the frequency and circumstances of epinephrine administration during the preceding academic year. Effective August 1, 2014.

For a more in-depth look at these two IL Laws check out; HB3741 and HB5892 .

Each state is different and some have more encompassing laws then others. Please be sure to check with your individual state, to be sure you are up to date on the current laws. I found my laws by going to the Illinois General Assembly keyword search. I used three key words to narrow the field, Epinephrine, Food, and Allergies, you can add school if you want to be more specific. This search helped me narrow the field of bills to 10 results and only 4 specific bills. Once you find your specific bill or bills, I recommend printing them out and reading them over a couple times. Go back later and highlight keep passages for fast reference in the future.

Planning Our First Big Trip After Diagnosis

We have been on a number of smaller trips since our daughters diagnosis in the spring of 2013. We have been camping, to the aquarium, and to several birthday parties for family and friends. For the majority of those trips I controlled the food. I knew what was being served, and we always took our own snacks.

This most recent trip is taking us to Florida via Chicago and Atlanta. I must admit that this was a very ambitious undertaking with a two year old, peanut allergy notwithstanding. But we are taking 2 two year olds. My Brothers' son and my mother will be joining us on this adventure. Did I forget to mention that we're driving?

We started planning this trip back in June and July. It started out as wanting to get the great-grandbabies to Florida, we didn't know if we wanted to fly or drive. When my husband found out that he could have the time off, we decided to drive it, and this time we were not going the drive straight though. So I added a couple of overnights at some choice destination spots, checked for great room rates and booked well in advance to secure a super rate per room.

Transporting was next. As much as I would love to have taken my SUV, we decided that a minivan would be the way to go. Once again I took to the internet to find the best deal. We wanted a low price, unlimited miles, and a DVD player for the kids. If we keep our rental for more than a day we don't bother with their insurance, (usually between $10 and $12 dollars a day) we have our insurance adjusted to add non-owned vehicles to the police at the whopping cost of $5.00 for the month. Talk about a savings.

I feel I need to explain our scheduled stop at the Georgia Aquarium in Atlanta. I love aquariums, I've told my entire family that I would love to visit every aquarium in the continental US and collect a shot glass from each of them. Not that I intend to use them, but they are small and most aquariums have them, not to mention colorful. My Facebook group was discussing food allergies and the aquarium back in July. There were a number of mixed reviews, some just loved the aquarium, and other were distressed about the bag searches, and that they could not bring in their own food. So I went straight to the aquariums website, to read their policies for myself. I found the answers to my questions in the Frequently Asked Question under Plan Your Visit. http://www.georgiaaquarium.org/plan-your-visit/faqs.aspx .

The odd thing was that food planning wasn't more of an issue with this trip. Since we live so far from the majority of our family we drive a lot and have established a number of safe stops where we can eat. I know that because of the nature of chain owned stores, all things are not the same everywhere, and menu items can change from one chain store to the next, but we need to eat and I'm always double checking the menu and server before we order. I have also listed on our route large towns for scheduled meal stops to insure a larger selection of choices, and as always we will be packing snacks.
We love, Teddy-Grams, applesauce, raisins, string cheese, yogurt, and goldfish. We also make cookies and granola bars.

Keep an eye out of the follow-up in about two weeks.