AllergicChild, Halloween Fun & Safety

Managing food allergies and Halloween isn’t always easy, but we have found ways to have fun.  Since it’s a holiday immersed in food, it’s easy to become overwhelmed and want to not participate at all. Our son never allowed the thought of not trick-or-treating to enter his mind! Therefore, we learned how to handle the holiday and keep him safe too. Here are some of our ideas to enjoy Halloween and also to keep it safe:

First, have your child choose a great costume.  The dressing up part was most of the fun for my son.  The candy was an afterthought.  We’ve made costumes and allowed him to be a part of this so that he can get really excited for this part of Halloween.

My son usually had a Halloween/dress up party at preschool and elementary school for which he always brought his own snacks.  Some of these parties were elaborate events with a huge amount of food brought into the classroom. This is where I found that being a Room Mother was vital! I was able to help plan the party and ensure that only safe foods were brought in. Also, I attended the party to ensure that nothing unsafe was brought in. You’d be surprised how many parents have forgotten about nut-free snacks being required in the classroom by the time Halloween comes around. We learned to ask the teacher to send out a reminder notice prior to the party day asking for only nut-free food to be brought in. Letters at the beginning of school regarding a nut-free classroom can be but a memory to parents who don’t deal with food allergies daily.

As my son aged, we found many teachers were no longer willing to have a bunch of sugary snacks brought into the classroom at 9 am for kids to gorge on before lunch. We had many teachers give guidelines for the snacks such as only one sugary treat, and everything else had to be fruits or vegetables! Boy did we love that kind of teacher! I never trusted even the most well-meaning parent to bring in safe food for Morgan. Cross contamination in their kitchen could occur, even if they were supposedly making a safe treat. We always provided Morgan’s food for these events, or I brought the foods for the party and showed him which ones he could eat.

The rest of the class had nut free snacks that another parent provided.  I have brought special treats for my son to pass out to his friends from Vermont Nut Free Chocolates or from one of the other safe allergy food companies listed on our site here. It was very exciting for the class to have candy that he could enjoy too. This especially helped in the preschool years.

For Trick or Treating, we purchase only food that he can eat to give out at our door or we give out mini-Play-Doh or plastic rings and spiders.  When he was younger, and we would go out Trick-or-Treating through our neighborhood, he would occasionally ask for a nut free snack from a neighbor!  Most of the time people thought that was cute, and didn’t really understand.  We’ve asked him to just say thank you regardless of the food he receives. Our agreement has always been to not eat ANYTHING until we get home! I know of some food allergic families who will give out safe candies to their neighbors and tell them what costume their child will be wearing so that only safe foods will be brought home. This can work great especially if you know your neighbors well!

Once home, we pore over the candy he receives and begin to put it into piles.  The candy that we know has nuts in it goes into the pile to give out to other trick-or-treaters coming to the door.  In this way, this candy doesn’t stay in the house where an accidental mix up can occur.  Added to this pile is candy that he doesn’t like, and candy that doesn’t have a label on it.  If we don’t know the candy and it doesn’t have a label on it, we don’t allow our son to eat it.  What is left over is the candy he can eat.  This is candy or treats that we know are safe.  Raisins and Dum Dum lollipops were some of his favorites as a little boy.  There usually isn’t much candy in this “safe” pile, so I allow him to exchange some of his candy for safe treats or pennies/nickels/dimes that I have on hand. Be especially careful to read labels on all candies. Some ‘regular’ size candy bars are safe, but the Halloween size ones are manufactured in a different facility and therefore may not be safe.

My daughter doesn’t have peanut allergies; however most years she gave away her peanut candy also.  She felt better doing this, and we allowed her to make her own decision.  We kept her candy separate, with her name on it in a separate cabinet from my son’s candy.  For any candy that she kept that could cross with peanuts in the manufacturing process (such as M&M’s), we ensured that she ate these outside of the house.

This year, with Morgan a junior in high school, there won’t be any Halloween parties at school and therefore no extra foods brought in. The kids are allowed to wear costumes, but the day isn’t centered on parties. I must say it’s a welcomed relief to have him in high school!

Remember that Halloween is just one day, but vigilance is required. Make sure to discuss with your child what your expectations are about foods brought into his/her classroom. Discuss a plan for the day and what you expect in terms of your child eating safe foods at school parties. We found that talking about scenarios prior to the day helped Morgan to deal with the unexpected like unsafe foods brought into the classroom.

I also had already cleared with the teacher that if an unsafe food was brought into the classroom that he/she would deal with the parent and ask that the food be taken back home. A parent’s hurt feelings are preferable to a child going into anaphylactic shock.

Overall, try to have a fun day!

 

 

 

 

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Parents Who Bully About Food Allergies

As a follow up to last month’s article about Managing Food Allergy Bullies I received many requests to write more about our experience with other parents who have bullied me and/or my husband about our son’s food allergies. It isn’t easy to manage the fears that come with sending our children off to school and then to add other parents and their issues really can push us to our limits of civility!

It was a very difficult time when our now 16 year old son, Morgan, was in kindergarten and first grade. The elementary school had never had a child with food allergies as severe as Morgan’s. And he was the first student to receive a 504 Plan for his food allergies. I had been friends with a group of three other women prior to Morgan starting elementary school who had heard me talking about Morgan’s food allergies around the neighborhood at birthday parties and soccer practices. Two of these women had children Morgan’s age, and they experienced firsthand the changes in the curriculum that had to occur in kindergarten to keep Morgan safe. And boy did they have an opinion about it!

On one occasion, the kindergarten classroom had a ‘restaurant’ for parents to come in during lunch. Peanut butter and jelly sandwiches had always been the menu item. Instead of this item, cheese sandwiches were served. I heard about it from one Mom who told me that pb&j sandwiches sure did taste better! I realized later that I expected my friends to understand my child’s food allergies and to provide support. In the end, that was too high of an expectation.

Another Mom told me that she hoped her daughter wouldn’t be in Morgan’s classroom the next year because she was tired of all the changes in regard to food. That really hurt my feelings. Sadly, things only got worse with these parents; however the school principal and teachers were very supportive and followed Morgan’s 504 Plan which required an allergen free classroom. The school staff was responsible to keep Morgan safe and that’s what was most important to me.

My friendship with these Moms deteriorated. I couldn’t seem to find the right words to express my upset with them, and therefore stayed silent and distant. The school continued to follow Morgan’s 504 Plan and kept him safe in his allergen free zones in the classrooms and lunchroom. They also made sure Morgan was emotionally supported as well. A few years later, the top blew off the situation.

One Mom announced at a PTO meeting that she was done following “all the no peanuts rules” and was bringing peanut butter cookies to Field Day for all the students. However a parent whose son was in our Cub Scout Den spoke up that she wasn’t willing to support that and children with peanut allergies deserve to be safe. I was so proud of this Mom! And it felt so good for someone to stand up for Morgan and for ALL the kids with peanut allergies especially when her children didn’t have any. For some reason, my former friends thought that my son was the only one with food allergies. I always got the sense that they thought we had manufactured his allergies for him to get more attention.

I spoke to the principal of the school after that PTO fiasco and learned that she had been dealing with this Mom for years with multiple issues around food. There had been demands that her son needed protein in the form of a Snickers bar in the classroom for a snack. Thankfully, the principal had stated that a different form of protein would be necessary. There had been threats by the Mom to bring in peanut butter cookies to a party because that’s what she wanted to bring. The principal told me that she said, “then the cookies will be immediately removed from the classroom and sent home.” I am so grateful that the principal had such a backbone, and that she stood up for Morgan’s safety.

My husband, Bob, got to experience an upsetting situation after we received a phone call from the principal one day when Morgan was in 5th grade. We learned that another Cub Scout from our Den decided to sit in the peanut-free zone at school eating a Butterfinger bar. When Morgan couldn’t get the child to move, he went to the principal to help him. The boy was promptly removed from the table and his father was called. The principal also called us immediately to let us know what transpired at school and that the boy had been suspended from school for a day. Since my husband knew this father very well through Cub Scouts, he called him to discuss the situation. The father was irate that Bob would call, and then this Dad decided to come over to our house to yell some more and state that his son would never do what he was accused of. Thankfully, Bob is a patient man and just let this Dad vent before saying that he didn’t appreciate what his son had done and Bob realized this Dad was in complete denial that his son had done anything wrong! Thankfully this never occurred again.

During all these issues, I continued to work with my school and school district to further education and awareness of food allergies. Once Morgan was in 4th grade, the school district added food allergy awareness training to its accreditation model; in 5th grade, Colorado passed a law allowing him to self-carry his EpiPen and the school district started a Food Allergy Task Force to create guidelines to keep children with severe food allergies safe in school. I focused all of my energies on these activities, and kept the school staff focused on my son’s safety. These parents got to throw tantrums and nasty words around, but fewer and fewer people listened to them. Their bark (and their bite!) didn’t arouse any sympathy as more and more children with food allergies came into classrooms.

We have lived in our home for almost 19 years and Morgan has gone to kindergarten on to high school with the same group of kids. We refused to move away or pull him out of school. Instead, we worked within the system which certainly wasn’t easy every day! He’s friends with all the kids whose parents gave us such a hard time, and at least one of the boys is in several classes with Morgan this year. No longer do the parents say anything to me about allergen-free classrooms or allergen-free zones. As my husband says, “Time heals all wounds, and wounds all heels!”

 

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Interview with Disney Star, Kenton Duty, about Managing Food Allergies


Born and raised in Plano, Texas, Kenton discovered his love for acting in the fourth grade when he landed supporting roles in the Dallas Theater Center’s rendition of A Christmas Carole.  It was such an amazing experience for Kenton! He loved being on stage and got great joy from entertaining the audience.  The show did thirty-five performances between Thanksgiving and Christmas Eve, and Kenton relished every single one.  He followed that with a lead role in the production of Ragtime.  The production was seen through the eyes of his character!  The following year, Kenton was asked by his agent in Los Angeles to give California a try.

Kenton Duty can currently be seen as one of the stars on Disney Channel’s hit series “Shake It Up” as the hilarious character of “Gunther.”  Most recently, Kenton wrapped production in a lead role in the indie film Contest (2013). The movie is a story about standing up to bullying.  Kenton is also writing and recording a song for the movie.

Kenton, thank you for ‘speaking’ with me at AllergicChild.com. Can you please tell us how old you are and what food allergies you manage?

I am 17 years old.  I have a chocolate allergy and a wheat allergy.  I outgrew my dairy allergy when I was younger.

Have you ever experienced anaphylaxis or been to the ER with an allergic reaction?

I have never been to the ER or experienced anaphylaxis due to my food allergies.  I have had to go to the doctor several times.

Do you carry an EpiPen? How do you carry it?

I carry an EpiPen with me at all times.  I carry it in my backpack.  It is extremely important to have it with you at all times.  You do not know when you might need it.  I really like to think that it is just another item I carry around like my phone, iPad, sunglasses, etc!

With all your traveling, how do you manage your food allergies to stay safe?

I do several things to make eating a safe, but enjoyable time.  I pack or ship my food to the various locations.  I also bring my food on airplanes.  At some restaurants, it is easy to ask them to prepare my sandwich on the bread I brought in versus their bread.  I definitely explain to restaurants what my allergies are.

What is done for you at Disney and on movie sets to keep you safe?

I have explained to Eric (our on set caterer) what my allergies are, and he is amazing!  He is so thoughtful and encouraging.  He ensures I have healthy food choices to eat every day.  I also supply him with bread and bagels that are gluten free, so he does not have to worry about that.   The producers on the show and movie sets are very supportive too.  It is nice they accommodate my diet.  On the movie set I am currently working on, there has not been one meal where I have not had an option for food!  THANKS guys!!  (I am also a pescatarian, so I do not eat meat other than fish.)

I saw in a recent FAAN newsletter that you went to Capitol Hill to encourage the US Congress to support the School Access to Emergency Epinephrine Act. Can you tell us about this? What was the best part of this experience?

Oh my goodness!  It was amazing.  To be there with FAAN was so much of an honor.  I enjoyed every second of the day having the opportunity to speak with congressmen and senators about how important it is to pass this legislation.  I believe in the Act 200%, and I wanted to convey my thoughts as someone who carries an epinephrine auto injector, is a student in school, and can relate to the situations where an auto injector may not be available at the critical time in which it is needed.  The individuals we were able to meet with were very nice, and I walked away hoping they were a little more enlightened by our meetings.

Do you have any advice for younger kids who manage food allergies?

I know that you can possibly be bullied or made fun of because of your allergies.  I have definitely experienced those things.  I like to encourage kids to not feel weird or different because you have allergies.  It is hard, but if someone is not being nice or bullying you, let your parents or teachers know.  You do not want to let it get out of hand.  One of the lessons we are hoping kids learn in the movie I am currently filming, “Contest”, is that they can stand up to bullies.

I also encourage kids to not eat anything their parents have not let them know is safe.  Whoever cooked the item may have used different ingredients than what you are used to having in the product.  So, always check with your parents!

I definitely want to encourage kids to carry their epinephrine auto injectors with them.  It is just another thing to have in your backpack!  And, it will save your live.

Anything else you’d like to add?

I appreciate you asking me to share in your newsletter.  Your newsletter is very informative and educational.  The more aware of food allergies we can make society, the more safe it will be for those of us living with food allergies!!

Thanks Kenton!

 
 Kenton & Morgan at the 2011 FAAN Teen Summit

 

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Managing Food Allergy Bullies – An Interview with Kristen Kauke, Social Worker

Kristen Kauke is a Licensed Clinical Social Worker who practices in IL.  She was diagnosed with food allergies as an adult and is the mother of two sons with anaphylaxis to peanuts, egg, milk and soy.  She is a regular presenter at Food Allergy & Anaphylaxis Network conferences across the country, and helps individuals cope with anxiety due to severe food allergies.

Kristen, there is such an emotional piece to food allergies. What situations of bullying do you hear children with food allergies share with you?

First, I think it’s important to differentiate between teasing, or “busting chops,” and bullying.  Teasing/busting chops happens frequently, especially among boys.  This is the condescending verbal banter that is a common way boys socialize, even among friends.  Examples might include sarcastic comments such as , “Your food looks sweet.”  Or put downs like “Why can’t you eat anything normal?  It’s like you’re allergic to everything!”  While these types of comments can sting, they aren’t necessarily bullying.

Bullying is the repetition of negative actions on the part of one or more persons against another who has difficulty defending themselves.  Bullying may be perpetrated in the following forms:  physical, verbal, social exclusion, false rumors, threats, or cyberbullying (texting, social media).  When it comes to food allergies, research tells us that most bullying episodes are in the form of verbal taunting.  This might sound like, “I wish you would die.  If I had a peanut right now, I’d throw it at you.”  Physical examples of bullying related to food allergies have included waving, throwing, or touching the victim or their “safe food” with the food allergen.

What can you offer to parents who find out their child has been bullied about food allergies?

First and foremost, parents can LISTEN to their child when they report bullying.  Thank them for sharing and acknowledge the difficulty of sharing such an emotional situation.  Second, acknowledge their feelings and experience.  This might sound like, “I imagine that felt terrible.  I can see how you would feel angry and sad.”  Finally, advise your child to react in the moment vs. later.

As a parent, we want to help our children become stronger and stand up to the bully. What is the best thing and the worst thing for parents to do?

The best thing parents can do to teach their child to react in the moment of verbal bullying is to teach and role play assertive language.  One simple, yet powerful framework is the “I message.”  I feel ____ because ____ and I need.  For example, “I feel mad and unsafe when you wave around peanuts and I need to you take my allergy seriously.”  Take turns acting out potential situations so your child gains comfort and understanding of speaking assertively in appropriate situations.

When it comes to physical bullying, the best thing parents can do is help their child report physical instances of bullying to the adult in charge, such as the school principal.  Parents are wise to keep records of incidents reported and outcome (or lack thereof).  Parents could welcome the idea of change of classroom when applicable.  They can also use the situation to help their child keep perspective on the powerful impact of our words and actions on others (i.e. siblings).  Finally, parents can keep in mind that children can be resilient even in painful situations.  When children learn to seek and accept help, they gain personal power.

Parents want to avoid addressing the parent of the offending child directly, or advising their child to try to make friends with the bully.  “Winning over” the other almost never works.

How about the child – what’s the best thing for he/she to do in the middle of being bullied? And afterward?

When it comes to teasing or “busting chops,”  a child can “tease the tease.”  For example, in response to the previous tease of “Why can’t you eat anything normal?  It’s like you’re allergic to everything,” a child might respond, “I know, right?!  Grrr food allergies.”

When it comes to verbal bullying however, a child should consider the following:  keep a low profile;  avoid the bully;  buddy up, especially in places that are less supervised such as the playground as bullies tend to prey on victims when they are alone and unprotected;  and hang with positive people – find places to belong.  When bullied, it is important for the child to NOT provoke the bully in the following ways:  tease the tease, make fun of the bully, or tattle on the bully for minor offenses, as these might just make the bully more aggressive and seek retaliation.

Regarding physical bullying, a child should always seek help from an adult.  For example, if there is a threat of physical harm or actual injury due to pinching, hitting, kicking, the child should report this to their parent, teacher, principal – anyone in charge who can take charge.

Whether the bullying is verbal or physical, block bullies from social media.

When should a parent seek professional help for their child? Are there certain behaviors to watch for?

Signs that a child’s stress due to bullying has overwhelmed their coping abilities would include:  decline in grades, difficulty falling asleep or sleeping too much, avoidance of friends, loss of interest in former hobbies or lack of participation in activities, irritability, frequent physical complaints (tummy aches, headaches), and a significant change in mood that last longer than 2 weeks.  When a child demonstrates hindered coping, counseling should be considered to support their recovery.

As a parent, I’ve experienced being bullied by other parents in my son’s elementary school who didn’t understand food allergies. It’s very difficult to stand up to another parent, especially when I thought that some of these women were my friends. What can you offer to parents who are being bullied?

Parents can use the same coping techniques for both verbal and physical bullying as noted for the kids.

Such situations cause us grief – there is a loss of friendship and support we thought we could count on.  We experience disbelief, sadness, even anger.  However, in the face of such challenges, sometimes avoidance of the offending parent is the best option vs. continued pressure.  Sadly, sometimes a person just is not interested in the truth.  We need to realistically gauge the situation.  If our conversations and attempts to educate are going nowhere, we are wise to stop and wait it out.

It is said that we are only able to hear what we are ready to take in.  There is nothing we can do to speed this along for others.

Should a parent deal directly with the other parent? Should a school administrator or some other professional get involved? Or should the other parent’s behavior just be ignored?

In my opinion, it is best for parents to deal with school officials regarding instances that concern the health and safety of their child.  Parents should report instances of verbal or physical bullying.  They might consider giving their child’s teacher a “heads up” regarding teasing.

Parents can also know they can control other factors of their child’s environment:  they can avoid situations that tend to result in bullying episodes, they can choose to change teams, request that their teacher limit contact between kids, etc.

Is there anything else you’d like to add?

I think it is helpful to remember that sometimes other’s resistance or anger is more about their own insecurities and fear of change.

We need to put the focus on regulating our own emotions vs. going to war.  We can put our energy into creating conversations with others who ARE open to education and awareness.  We can put our energy into supporting policy that brings more safety for our food allergic kids.  We might explore bringing screenings of bullying documentaries to our school districts/communities.  Some fantastic documentaries include, “Finding Kind” and “Bully.”

For our children, we can seek places for them to feel a sense of belonging – the park district, youth groups, community theater, volunteering, food allergy groups.

Thank you Kristen!

 

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Food Allergy, Asthma & Evacuation from Your Home

We have had the opportunity to learn about this subject first hand recently in June 2012. The Waldo Canyon fire in Colorado Springs has been a devastating experience for us but provided experience that we thought would be valuable to everyone managing food allergies and/or asthma when you have to evacuate your home.

On Saturday, June 23, the fire began in a mountainous area near Colorado Springs in a canyon named Waldo Canyon. This is a hiking destination with beautiful views and an abundance of trees. Because of the extremely low precipitation we have received for the last 2 years – only 19% of normal – one cigarette dropped could have caused this entire situation. We also had experienced 100+ degree temperatures which is very unusual for Colorado, especially at this time of year.

Day 1 – the Fire Starts

We live in an area northwest of Colorado Springs in Rockrimmon, which is in the foothills of the Rocky Mountains at 6500 feet above sea level. This pictures shows the smoke from the fire viewed from our home within two hours of the fire being reported. We immediately turned on the local news which was already beginning to announce voluntary evacuation notices.

We sat down and created a list of what we wanted to take from our home. The news reminded us of the 5 P’s: People, Pets, Papers, Prescriptions and Photos. They were suggesting bringing 3 days worth of items, but we planned on bringing ALL of our prescriptions since we had no idea whether or not our evacuation would last only 3 days or 3 weeks.

At one point, we received information from the local TV news that we were on voluntary evacuation. That’s when we began packing clothes and checking off items from our list. We decided that we would go to my husband’s office if we were evacuated. We couldn’t go to one of the local evacuation centers because of the inability to cook our own food not to mention the potential for coming into contact with Morgan’s allergens: peanuts, tree nuts, sesame, fish, shellfish & pets. And at that time on Saturday, my mother was out of town and we weren’t able to reach her to see if we could go to her house. We also took photos of all of the rooms in our house to include all of our household items. We just had an insurance review with our agent, so we knew our insurance was in good shape. We have “loss of use” in our policy which would allow us to go to a hotel if we were mandatorily evacuated and therefore didn’t have use of our home. We kept this in mind too since a hotel would allow us to be in air conditioning which would also help our son, Morgan, and his asthma.

The voluntary evacuation notice went to a mandatory evacuation reported on the local news and we really jumped into action. Within 10 minutes, the news said they had made a mistake and in fact we weren’t in the evacuation area. We heaved a sigh of relief but continued to watch the news carefully knowing that this fire had already burned 150 acres in just a few hours.

Day 2 – Smoke Haze

We awoke with more smoke in the air and concern for Morgan and his asthma. He kept his inhaler within an arm’s reach, and we insured that his Pulmicort was full. The fires didn’t really impact us that day in terms of growing in our direction, yet we decided to keep our bags packed just in case things changed. We confirmed with my mother that we could evacuate to her house should that become necessary. She lived nowhere near us, so that ensured we wouldn’t have to move again with the growth of the fire.

Day 3 – Complacency

We began to be complacent in our thinking that the fire wasn’t going to get near us. We continued to watch it grow on the news update maps, adding another thousand acres to become a three-headed monster. The picture opportunities were incredible with the blue sky and the plume of smoke in the air going over Colorado Springs. No additional evacuations were given and we went to bed feeling pretty good about the firefighters’ ability to fight this fire. There were smoke jumpers who parachuted into the steep terrain of the Rocky Mountains to sleep near the fire and keep watch on it.

Day 4 – Evacuation

Once again we awoke to a layer of smoke blanketing Colorado Springs. Air quality was abysmal. Morgan stayed inside our air conditioned house enjoying it since once again we were forecast to have 100+ degree temperatures. We could see the fire continue to expand during the day over the front range of the Rocky Mountains. From the city of Colorado Springs, it was apparent that more was burning, but the fire command leaders were assuring us during press conferences that they were aware of the possibility of high winds and had fire lines in place in addition to 1200 firefighters on the front lines. They nor we had any idea what was coming!

Colorado is renowned for dry thunderstorms, and one such storm began in the afternoon with winds whipping in multiple different directions, lightening striking but no rain.

At 4pm, Morgan was home alone watching ash fall from the sky and called both Bob and I to say we better get home soon. The winds were 65 miles per hour and the unbelievable firestorm was raising the temperature near our home by another 10 degrees versus surrounding areas not affected by the fire. We weren’t in the pre-evacuation zone nor the voluntary evacuation area (the level up from pre-evacuation but not yet in the mandatory evacuation zone), but things were changing so quickly that Morgan began to pack in earnest.

Photo Courtesy Unknown

We are on the reverse 911 call list of our local Sheriff’s Office and knew that we would receive the call to leave if we became part of the mandatory evacuation area. My husband got home first after being one of the last people to get gas at the local station. The traffic was horrendous as neighborhoods to the west of us were put on mandatory evacuation. The fire was roaring down the mountain shooting embers 1/2 mile ahead of the main fire creating more spot fires. We later learned that 65% of these embers started new fires. The fire was moving at more than 20 miles per hour. People were panicking because the fire was so close to us and they saw live embers starting small fires in the neighborhood. Some families had only minutes to pack up and get out of the way of the fire.

We received the mandatory evacuation call to our home and cell telephone numbers at 6:30 pm and a text to our cell phones to evacuate immediately. I was just walking in the door having been caught in traffic trying to get back into the neighborhood. We were never on pre-evacuation orders nor on a voluntary evacuation list. We went immediately to a mandatory evacuation.

We packed in expectation that we may never see our home again. My husband turned on the hose with a sprinkler to water the deck. We had heard on the TV that firefighters were turning off the gas and electricity in neighborhoods that were evacuated so we decided to pack up all the food that we could carry in coolers. We figured nothing would be salvageable in the heat without refrigeration for days.

Photo Courtesy Unknown

The smoke cloud was black and so densely thick that we put on breathing masks to protect our lungs while we began to pack the car.  Ash was falling like snow, yet some pieces were the size of my palm. That’s a very difficult assignment to pack the right items when the brain and body are in shock.

We left our house within the hour waiting for some of the traffic to clear and thankful that we weren’t seeing any live embers near our home. The fire had exploded in ways that the experts with over 30 years of experience in Level I firefighting, had never seen before.

 

Photo Courtesy of The Denver Post

We drove the back route to my mother’s house and looked up at the mountains on fire. This was truly the equivalent of 9/11 for Colorado Springs. Never had I seen such destruction of our beautiful scenery. Watching tendrils of the fire snaking down the mountain I found myself sobbing. I was so grateful that we got out safely, and also so sad that what was left would never look the same in my lifetime.

The news conference later that evening was sobering. The mountains were on fire the likes of which no one in Colorado Springs had ever seen before. It was the worst natural disaster we had ever experienced. Our local neighborhoods were burning and in order to keep the firefighters safe, they were pulled out until their safety could be ensured. The scenes on the TV were surreal. We continued to watch the news coverage into the night at my mother’s house, grateful that we got out safe, and in fact 22,000 people were evacuated within a few hours with no accidents or injuries. That was nothing short of a miracle!

Day 5 – Shock and Evacuee Status

We awoke having barely slept with the adrenaline rush from the night before. My mother’s small 2 bedroom townhome was not air conditioned, and between the heat, the smoke and the shock of the previous day’s events we were exhausted. The reality of our situation was hitting us.

My husband had to go to work in Denver despite everything we had been through the previous day. He was pulled aside by some of his colleagues and told that he smelled like a campfire! We were so accustomed to smelling smoke, we didn’t even realize that our cars, clothing and suitcases were all smoke ridden.

We were going to have to figure out how to keep Morgan’s asthma from flaring since he was no longer in air conditioning full time. By the time we were evacuated all of the hotel rooms in Colorado Springs were booked since 10,000 people had already left their homes before our evacuation notice. And because of Morgan’s food allergies, we needed an extended stay type of arrangement so that we could cook, and this too wasn’t available. With the lack of air conditioning, we wanted to open the windows, but the smoke prohibited that. Morgan remained inside with the windows shut and his inhaler within an arm’s reach. We were too exhausted to go anywhere else.

Smoke covered the city making it smell like a campfire and ash was on our cars even though we were 4 miles from our home. We were now in a group called “evacuee.” It’s a group in which I never wanted to be a member. Yet we were offered showers at the local YMCA or a shampoo and blow dry at local hair salons.

We were told on the local TV stations that the unified command center of the fire would provide representatives in a press conference daily at 8 am and 4 pm. Updates as to the progress of the fire and plans for the day of firefighting would be delineated in addition to information about evacuations. We could watch this press conference on local TV stations. We continued to monitor local TV stations updates on their Facebook pages and watching the Twitter feed for #waldocanyonfire in addition to having the TV on constantly.

We began to learn new firefighting terms such as pyrocumulus clouds, spot fires and containment. Planes continued to fly overhead dropping slurry and water trying to stop the spread of the fire. The number of firefighters ballooned to 1500, coming from across the state and the nation, with the fire becoming the number one priority in the nation. The firefighters, we learned later, pulled 48 hour shifts sleeping for only 3 hours on the pavement in order to save homes in and near our neighborhood.

The 8 am press conference showed horrific progress of the fire on June 26, 2012 – Day 4 in my blog.

The fire had tripled in size to 15,000 acres in one horrific day with only 5% containment. The evacuees numbered 32,500.

From looking at the map we didn’t believe the fire reached our neighborhood. We continued to text, email and call neighbors and friends to ensure their safety. A neighbor told us that as he evacuated he saw a spot fire beginning in a park 1/2 mile from our home. That kept us cautious to hope too much.

While our situation with food allergies and asthma was difficult to manage, we knew of other families with far more onerous circumstances. The 25 year old daughter of one family friend had been hospitalized since March with a traumatic brain injury suffered while skiing. Our friends evacuated their home to go sleep in her hospital room so that at least their family could be together in this difficult time.

Day 6 – Asthma Flare

Morgan awoke with a horribly tight chest and his asthma flaring badly. We had kept the townhouse closed up during the night to keep the smoke out, but the heat in. His rescue inhaler wasn’t providing enough relief. In our quick exit from our house, we neglected to bring his nebulizer which he had needed only once in the previous 14 years.

I called our allergist as soon as her office opened and got an appointment. Morgan was put on oral Prednisone, Symbicort and Albuterol via nebulizer. Our doctor suggested that he needed to be in air conditioning to help his asthma calm down.

I called our insurance company to explain what was occurring and to see how they could help. Given that we were in a mandatory evacuation area under civil authority we were allowed to receive “Loss of Use” compensation for the inability to be in our home. This coverage would have paid for us to be in a hotel if we had the ability to find one and would have paid for meals if we could have eaten out. In our case, the coverage was going to purchase us a room air conditioner!

We learned in the daily news conference that at least 346 homes had burned and an untold number were damaged. The destruction was mind boggling. And this estimate was likely to go higher as people got access to their neighborhood to survey smoke and water damage to the interior of their home.

Photo Courtesy Gazette.com

City officials posted online a list of 34 streets that had burned homes. These homeowners were asked to attend a community meeting to find out the extent of the damage to their home from a street view. Thankfully, our street wasn’t on the list, but many of our friends’ homes were.

The fire was still increasing in size – up to 16,500 acres now but was 15% contained. We watched small fires burning in the hills above the church where Morgan’s Boy Scout Troop meets. We talked about how just a week ago if we would have seen smoke there we would have been so concerned. Today the conversation was more about relief that there were only a few fires burning that appeared to be small.

Some homeowners in evacuation areas to the east of us were allowed to go home at 8 pm. Traffic jams occurred with people wanting to get back home by 8:01! These areas were still on pre-evacuation notice meaning that they needed to be prepared to leave again should the fire flare up. Our street wasn’t on this list either. With estimates from officials that the fire won’t be fully contained until July 16th, being home with the idea that we should be ready to evacuate again didn’t sound great, but it’s always nice to be home!

Day 7 – Recovery

Thankfully all of our actions the previous day helped Morgan to awaken with his asthma doing better and under control. The cooler indoor air along with getting stronger meds on board helped, but most of all the smoke haze had decreased somewhat.

The recovery process was just beginning for people who found out their homes were gone or damaged. We continued to learn about friends whose homes were burned. Other friends whose homes are located in the most severe burn areas are suffering what seems to be survivor’s guilt. Like a tornado, one home was burned to the ground and the home next to it was untouched.

In addition to that,  many friends couldn’t access their home because smoldering fires in the adjacent burned properties continue to burn. Then, to add more insult, gas lines to surviving homes will probably take months to check and repair from the heat damage of the fires.

By the end of the day, at 8 pm, we were allowed to go back home. I can’t tell you how wonderful it felt to drive up our street and see our neighborhood green and untouched by the fire! Neighbors were calling out “Welcome Home” shouting through the dark to each other.  Our home was unscathed by the fire, and thankfully no one looted the home while we were gone – a sad occurrence for some of our neighbors.

The garage smelled like smoke, but we had inadvertently left on the air conditioning which filtered all the smokey air leaving barely a trace of smoke inside.  A fine layer of ash was downstairs in the room closest to the garage, but the rest of the house had hardly any. Our Andersen Windows were worth the investment 10 times over!

The Waldo Canyon Fire was the worst fire in Colorado history, “a firestorm of epic proportions.” In the 40+ years of living on the front range of the Rocky Mountains, we had never been evacuated from our home. Colorado doesn’t have hurricanes or earthquakes, and our area never has tornadoes. We’ve only been affected by fires from a distance when the smoke came into our air. We really weren’t prepared for what befell us.

Now that we’ve had the experience of evacuation, we’d like to share some tips should you ever have to be evacuated with a child with food allergies and/or asthma.

Remember to bring the 5 P’s: People, Pets, Photos, Prescriptions and Papers.  As I wrote above, we took all of our prescriptions, not just a few day’s worth. Some of these prescriptions are very expensive, and we didn’t want to lose this investment! We also grabbed Morgan’s 504 Plan paperwork file and his Allergy Testing history file.  Sure these could be recreated, but what a lot of work that would have been! If your child’s asthma care plan isn’t committed to memory, you might also want to bring that with you.

Have a written list of evacuation items in addition to the 5 P’s. Have everything written on a list of what you would bring should you need to be evacuated. It’s so difficult to think of everything you need to bring in the middle  of a crisis.

Plan for your relocation. Know where you can go and what type of an arrangement you will need. Can you go to a shelter and have your child safely eat their food? Are you comfortable eating out every meal by going to a hotel? If not, what types of condos or extended stay hotels are in your area? Or within 100 miles of your area?

Bring Food with you. If you have ordered special food online, you certainly want to bring it with     you because you likely won’t be able to have it mailed to you in time wherever you are staying. Even businesses, like specific grocery stores, can be in an evacuation zone. So if you get food from just certain stores, keep some on hand at all times.

Be prepared to be gone for more than 72 hours. The officials told everyone here to pack enough clothes and supplies for 72 hours. Obviously those with burned homes won’t be back in a rebuilt home for probably a year or more. And others in the neighborhood won’t be allowed back in for months because of the gas lines needing repairs. Many of them only packed for 72 hours and have had to get clothing, prescriptions and other supplies while they wait to be able to go home.

Bring your nebulizer and peak flow meter even if they haven’t been needed recently. We learned this one the hard way! It would have been much easier to have had these items with us than to have to race off to the doctor’s office. Lesson learned!

Overall, we are so thankful for everyone’s concern during this harrowing time in our city’s history. It’s an event that we will remember for our lifetime. Thank you to so many of you who donated allergy safe food and money to our local Care & Share food bank which has received over one million pounds of food since the start of the fire. We are especially thankful for the firefighter’s resolve to run toward the flames and save so many homes, including our own!

 

 

Photo by Keri Chamberlain Barnes

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Emotional Aspects of Food Allergies on Marriage

Food allergies comprise much more than just a physical component. The emotional aspects of managing a child’s food allergies challenge even the best of marriages. In this ongoing series about the Emotional Aspects of Food Allergies, this month’s article focuses on the difficulties and the joys of managing your child’s food allergies while supporting your marriage. My husband, Bob, will offer his experience, along with myself and how food allergies have given us opportunities in our marriage to support each other and our son.

Nicole: When our son, Morgan, was 18 months old and diagnosed with multiple food allergies I was a stay-at-home Mom with a 6 year old daughter in first grade. I walked out of the allergist’s office scared and confused and tried to explain to my husband everything that was shared with me about reading ingredient labels, administrating the EpiPen Jr. and purchasing a MedicAlert bracelet. I became the teacher and he became the student. The Internet in 1997 wasn’t populated with the information about food allergies the way it is now, and I’m sure I didn’t get all the information accurate because I was so shocked and saddened by Morgan’s diagnosis. I became the vicious mother bear looking out for my cub against all enemies, and woefully my husband was sometimes viewed as one of those opponents. I monitored what food allergens my husband ate and how well he cleaned up afterward. I used shocking statements like “He could die!” in order to really push the point. I hadn’t learned that my husband and I could unite with the purpose of finding a way to manage Morgan’s food allergies in our household.

Bob: When we first discovered Morgan’s food allergies, my wife was extremely protective, overly so as if I would risk Morgan’s life. I did not fully understand the entire breadth of what a food allergy was, because we were both learning.  Over time I learned how to properly read ingredient labels, I learned about cross contamination, cleaning plates and being very careful with food. I fully understood the ramifications however I am not sure my wife understood that “I got it”. She was amazing however, in getting the right information and I really would listen.  I even searched the Internet on my own to learn more. Regardless, I felt left out at a certain level because it always seemed she always knew more about food allergies than I did and somehow, anything I did was never good enough. That caused some emotional distance and upset.  It never deterred me however, from insuring Morgan stayed safe when we were together in Boy Scouts or on a “Guy” trip, or even camping in the high Rockies. I knew what he could eat and I knew how and when to use the EpiPen. While traveling I knew exactly what to ask restaurants…and when to leave and not take any chances. Over time, Nicole and I have become a united front and we share ideas together as to what works for us.

Nicole: As Morgan aged, I found that I was very apprehensive to let him experience “normal boy” activities. I was overly protective, and Bob and I would have disagreements as to what was safe for Morgan to attend. Birthday parties, sleepovers, Boy Scouts and camping trips consumed our conversations. It was so important to find a balance between being cavalier (making assumptions that everything would be fine) and being unwilling to allow Morgan to attend out of fear.

It was necessary to become prepared by finding out what food would be served, who would be trained on the EpiPen, and how to manage food allergies by a campfire! One teenage boy at the last FAAN Teen Summit said something like, “If I listened to my Dad, I’d be dead today. That’s why I always listen to my Mom.” I want to present a united front about food allergies to Morgan, and it requires that both Bob and I be educated and able to take care of him – in preparation for activities and in case of emergency.

Bob:  I take our kids camping a lot. My wife, Nicole considers camping a Hyatt Regency without room service. So with that being said, I am the parent that does all the outdoor, high adventure fun! On camping trips, we always bring at least 2 EpiPens and Benadryl as a precautionary measure. Six years ago, we were camping near Lake City, CO at about 11,000 feet, when after a full day of fishing, I showed the kids how to cook trout the right way over a campfire. Upon taking a bite of the trout Morgan started to daze off with a glassy eyed look, my daughter Michaela got the Benadryl but to no avail as to any change.  Morgan was starting a severe allergic reaction and complained about having trouble breathing,  even though I knew he had tested negative for fish at the allergist’s office. I knew something was severely wrong as he was quiet so I took his EpiPen and punched it in his upper right thigh…after a yell or two, he then threw up the fish and I got him into the Landcruiser with his sister in the back with him. We raced down a very steep and long 4 wheel drive trail to the Lake City, Colorado Hospital. Thankfully he was fine after the one EpiPen, and we continued our camping for the rest of the week.

My adrenaline was pumping through the whole thing and I managed it as if I had been doing this every day.  I did not lose it till later; realizing just how close having a child with severe food allergies is to death.  Knowing I had the training with the EpiPen, the knowledge it might need to be administered again, and being an avid outdoorsman trained in first aid, I know all helped to keep Morgan safe and alive. We found out through a subsequent allergy test that Morgan is allergic to fish! Needless to say, we found lots of other things to do other than fishing when we go camping.

I’m so grateful that I learned the details about food allergies and what to do to keep Morgan safe in daily activities and also in case of an emergency. Both my wife and I are educated about food allergies; however in many families I have learned, if I just relied on her to take care of things, this situation could have been disastrous.

Nicole: I was home when I received Bob’s call from the Lake City hospital telling me all that transpired. It was really difficult for me to allow them to continue camping, but after talking with Morgan who told me, “I’m fine and I want to stay camping,” I knew there was no other choice but to trust Bob to watch for a biphasic reaction – which thankfully never occurred. Bob did stay up most of the night watching for that reaction after administering Prednisone to Morgan. What a Dad!

When Morgan was 14 years old, he went to the Boy Scout National Jamboree with 42,000 other Boy Scouts in Virginia. Once again, I was challenged to let go and allow him to experience high adventure fun! I’ve learned to view these types of opportunities with an attitude of “how can Morgan participate in this activity?” instead of an immediate “No, you can’t go!” I learned to do that from my husband, who has that positive attitude. Sometimes it is exhausting in trying to control all the aspects of a child’s life to ensure safety with food allergies. And out of that exhaustion I am more apt to decline opportunities. That’s where it’s great to have a spouse who is willing to take on an adventure like this. Bob was willing to travel out to Virginia and rent a hotel with a small kitchen. He shopped and then prepared all of Morgan’s food for the 10 days of the Jamboree. Bob also got to participate in the Jamboree as an adult Scoutmaster, which was a great experience too. Morgan had the time of his life at this event, which made all the work worthwhile!

Had I not learned how to let go and trust my husband, Morgan would have never had this opportunity.

Bob:  As Nicole mentioned earlier, my son Morgan and I attended the 2010 National Boy Scout Jamboree at Fort AP Hill, in Virginia. Before going, I was in contact with the Food Director of the event and we discuss various issues that may arise. He had assured me that I would be able to store safe food for Morgan in their central refrigerator unit they use for the Jamboree adult leadership. He also conveyed to me that all I had to do was call him upon my arrival at Fort AP Hill, in Virginia. I researched for a Condo-hotel that had a full kitchen as I knew I was going to cook Morgan meals for 10 days. I also knew I needed a way to protect the cooked food from cross contamination, knowing it would be stored with others, and to mark it with his name and unit number. I made a complete menu before I left which included breakfast, lunch, dinner and snacks.  Upon my arrival in Virginia, I purchased all the food, Ziploc bags with a white label to mark his name and unit number, ice and purchased a large 30 gallon cooler with wheels, knowing it would take me an hour’s drive to the Jamboree event and an hour to the central refrigeration area. It was 90 degrees outside. I labeled all the bags with a permanent marker, and froze what I knew were his dinners and breakfast. I packed 5 days worth of meals which is all that would fit in a 30 gallon cooler with ice, and took off to the Jamboree.

Imagine my surprise when I arrived at the central refrigeration area and they told me, they had no idea what I was talking about. I was told I could not use their facility as it was against Virginia health laws to place outside food in their facility from a non-certified vendor. I tried to keep my cool, explaining the issues once again that Morgan had to eat safe food and he was arriving tomorrow and was scheduled to be there for 10 days. I was rebuffed once more, this time by the director of food services, with an apology.

Not one to give up easy, I went to the Scoutmasters’ area and explained the situation, and once again was told I needed approval from the Food Director. Imagine the panic I felt, knowing Morgan had to eat safe food, and I had no way to provide him with such. I was preparing to buy a refrigerator. I then called Jamboree Headquarters and ask to speak with the event quarter master, and discovered they had special refrigerator units at each of the campsites that held 3 days of food for 2,000 people. I took off to the campsite that Morgan would be at, and found these huge military walk in refrigerator units in the middle of the woods. I unloaded his first 5 days of food into the unit. As a Scoutmaster, I made friends with the on-site camp quartermaster and explained Morgan’s food allergies in detail and why this was important. I also explained to him that Morgan would know what he was eating and gave the quartermaster a copy of his menus. I also shared with him about Morgan’s scouting achievements. He was very interested in helping.

Even with a 90 degree temperature and 90 percent humidity, I was beyond relief.  I sat down on an old tree stump at the camp and was emotionally spent, but knowing now in my heart that Morgan would be safe and would now be able to have the time of his life, made all the difference in the world. Also knowing I would not give up with a couple of “No’s” along with dealing with a few stubborn people, told me any father dealing with food allergies may face the very same situations and they too need to stand up for the well being of their child. The only way we can do this is to really take the time to understand food allergies and how it impacts our kids, our wife and ourselves. With this knowledge you too will know what to do in any situation and more importantly, why!

Nicole: We talked as a family what it would take for Morgan to attend the Jamboree safely, and what kind of financial commitments we were willing to take on for Bob to attend also to ensure Morgan’s safety. There can be a lot of financial stresses on a marriage with food allergies! And not just the cost of medication and doctor appointments – it’s also the cost of a parent attending events such as this to ensure safety.

It certainly would have caused a lot of embarrassment if I, as Mom, had been the one carting in the food for Morgan. It was okay that it was Dad, and in fact, Bob made so many good looking and tasting meals that other boys lined up to eat any leftovers Morgan had! I was so grateful that in the middle of all the turmoil that Bob was able to resolve any issue that came forward.

We’ve found that it’s really important for parents to present a united front when it comes to any issue – and not just those surrounding food allergies. I’ve had to give up a little of my over-active worrying; and Bob has taken on many of the responsibilities of ensuring safety for Morgan to be able to participate in “normal boy” activities. Together our marriage has grown in a united front to provide as much of a normal childhood for Morgan.

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Food Allergy, 504 Plans, Title II and K-12 Schools

I recently attended a presentation by a Senior Attorney for the Office of Civil Rights (OCR) in Denver, about Section 504, Title II and Students with Disabilities in Public Schools. This presentation was made to the MOSAIC support group in Denver, Colorado on  May 7, 2012 in regard to 504 Plans in the K-12 school setting. Information in this blog post should not be used to argue a specific issue that you may have with a school, but is provided here for informational purposes only.

The attorney started the talk with 3 rules:

1.            There are rules about this “stuff”
2.            The rules are your friends
3.            Follow the rules

The presentation covered the following two areas: Section 504 of the Rehabilitation Act that was created in 1973, and Title II of the Americans with Disabilities Act (ADA) created in 1990 which are read together. However Section 504 pertains to those institutions receiving Federal funds, while Title II pertains to all public entities.

OCR is part of the US Department of Education and enforces civil rights laws prohibiting discrimination in education programs on the basis of: race, color, national origin, sex, disability, and age. Religion is not a category. OCR is headquartered in Washington, DC and includes 12 regional offices across the US including the Denver office where the presenting attorney works out of.

Which schools are covered by 504 and Title II? Section 504 prohibits discrimination on the basis of disability by schools that receive Federal financial assistance; while Title II prohibits discrimination against people with disabilities by public schools (including public vocational schools and public charter schools).

OCR enforces compliance to Section 504, but rewards no damages. Section 504 is a civil rights statute and there is no funding for 504 Students. OCR has a database of recipients (schools) of federal funds.

Individuals with Disabilities Education Act (IDEA) is different. Many students are served under another federal law known as IDEA. OCR doesn’t enforce this. There are 13 specific disabilities covered under IDEA and it is a funding statute and not a civil rights statute. IDEA defines disability differently. To be protected under IDEA, a child must: have a particular disability listed in IDEA and need special education and related services.

What do school districts need to know about 504 and Title II?

Every year, each school district must: Identify and locate students with disabilities in the district who are not receiving a public education and notify parents/guardians of children with disabilities of the district’s duties under Section 504. Location is done from parents, teachers, doctors, Child Find, etc. A school district’s Special Education Coordinator is responsible for IDEA enforcement. A school district’s 504 Coordinator is responsible for 504 enforcement. A school district must have 1) a non discrimination statement, 2) a Section 504 coordinator and 3) a grievance procedure. Who the District 504 coordinator is must be published and that person must be adequately trained in 504 procedures.

A school district must provide a Free Appropriate Public Education (FAPE) to each qualified student with a disability in the school district’s jurisdiction regardless of the nature or severity of the disability.

What does Free and Appropriate mean?

Free means free!  No charging for costs related to disability, but school/district may charge usual fees paid by all students.

Appropriate means regular or special education and related aids and services designed to meet a student’s individual needs as adequately as the needs of non-disabled persons are met. It is equal opportunity for all students, not equal results. It gives students the opportunity to achieve.

Identification and Evaluation of Students

A school district has the unilateral responsibility to get/obtain information on the student’s disability. A disability does not equal diagnosis. A disability is a substantial impairment of a major life function. There is no cookie cutter approach. Two children both having food allergies and a 504 plan should not have the exact accommodations in a 504 Plan.

The school district must individually evaluate any child who, because of a disability, needs or is believed to need special education or related services.

When must the evaluation occur? Before the child’s initial placement in a regular or special education program. The evaluation is intended to answer two questions: 1) Does the child have a disability under Section 504/Title II? If so 2) What are the child’s individual education needs?

Regarding Question 1 above: does the student have a physical or mental impairment which substantially limits one or more major life activities? The ADA Amendments Act of 2008 no longer focuses on the disability but on what services a person needs. The 2008 amendments expanded the list of major life activities. Some of these are (but are not limited to):

Caring for oneself
Performing manual tasks
Walking
Seeing
Hearing
Speaking
Breathing
Learning
Working
Eating
Sleeping
Standing
Lifting
Bending
Reading
Concentrating
Thinking Communicating

Major life activities also include operation of “major bodily functions” such as:

Functions of the immune system
Normal cell growth
Digestive
Bowel functions
Bladder
Brain
Circulatory
Endocrine
Reproductive
Neurological
Respiratory

What is an impairment? Any physiological condition that affects a bodily system, or any mental or psychological disorder. A 504 Plan doesn’t have to have anything to do with a learning disability if a child has “just” the disability of food allergies. The question is: Does the student’s impairment substantially limit one or more major life activities? A temporary impairment like a broken arm is not a disability. An episodic impairment like diabetes or food allergies is  a disability because they substantially limit a major life activity when they are in an active phase. Conditions lasting more than 6 months need to be carefully considered.

Substantial Limitation does not mean severe restriction or inability in performing major life activity. Look to condition, manner and duration. Must consider the individual without mitigating measures such as an EpiPen or insulin to determine disability. The one exception to this is eyeglasses. There is no vision disability if eyeglasses correct the problem.

IDEA vs. Section 504/Title II

IDEA defines disability differently. To be protected under IDEA, a child must: have a particular disability listed in IDEA and need special education and related services. Under Section 504, a qualified student with a disability is protected regardless of whether the student needs special education.

Regarding Question #2 above: What are the child’s individual education needs?

Needs are identified by looking to a variety of evaluation sources, including: aptitude and achievement tests, teacher recommendations, physical condition, social or cultural background and adaptive behavior. Placement of the child must be by a group of knowledgeable persons knowledgeable of the evaluation data, knowledgeable about the child and knowledgeable about the placement options.

The group should answer the question: what is the child’s need related to the disability? (not to the diagnosis). This group should include the 504 coordinator, parent(s), teacher, school psychologist, etc. There are no unilateral decisions in this area. If a parent disagrees with the group/team’s placement then the parent can go to due process. You don’t have to have an attorney for due process (nor does the school district). Due process has to do with the content of the 504. It is a procedural issue if the school is not following the 504 Plan. It is best to use a school district’s grievance procedure first. A parent has 180 days after the last act of discrimination to file with the OCR.

A 504 Plan doesn’t have to even be written, but it is strongly suggested to do so. If a child has no 504 Plan and “just” a Health Care Plan that outlines the accommodations, a parent should make sure to receive procedural safeguards (which outline what to do in case the plan isn’t followed). If there’s a need for accommodations, then you have to have a plan and it’s best to have it written. Call it whatever you like, (as the attorney said, you can call it Fred (!) or a Health Care Plan or a 504 Plan) and include whatever is agreed upon by the group/team. Does every child with food allergies need a 504 Plan? It depends on if the disability limits a major life activity.

Placement is defined as appropriate educational services designed to meet the student’s individual needs. The Team carefully considers evaluation information from a variety of sources and all significant factors affecting the student’s ability to receive a FAPE. The Team documents all the information considered and does not rely on assumptions regarding persons with disabilities or classes of such persons. It’s about the individual!  Food allergic students should be integrated with other students.

Also discussed was the Court Case: U.S. Education Department Reaches Agreement with Memphis City Schools on Aids, Services for Students with Disabilities OCR does investigate complaints but it can also ensure compliance by completing a review which is what they did in Memphis. They screened all health care plan students to see if they were offered 504 Plans for food allergies. You might want to bring this court case to the attention of our school districts.

The 504 Plan should be re-evaluated at least every 3 years or before a significant change in placement.

FAPE – Common Compliance Concerns

1)            Making decisions unilaterally instead of by the Team

2)            Making decisions that are not based on evaluation information or child’s needs

3)            Failing to implement IEP or 504 Plan

4)            Not affording parents procedural safeguards (a system regarding identification, evaluation and educational placement). Procedural safeguards include: notice, records review by parent/guardian, due process-impartial hearing with participation by parent and counsel (if desired) and a review procedure.

The term ‘least restrictive environment’ was discussed in the question/answer session. There is a careful balance of confidentiality between the school’s responsibility to implement the plan and the child’s need for privacy. The child’s disability may be announced to keep the child safe in some cases.

Reasonable accommodations is a concept for post-secondary education and employment places. Section 504 requires that the individual education needs of students with disabilities are met as adequately as the needs of students without disabilities. See Question 14 here.

FAPE is regular or special education and related aids and services designed to meet a student’s individual needs as adequately as the needs of non-disabled persons are met.

For children with food allergies going to college, a transition plan in the last two years of high school is suggested.

 

 

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Food Allergy, College & 504 Plans

I recently attended a presentation by a Senior Attorney for the Office of Civil Rights (OCR) in Denver, about protections of Section 504, Title II and Students with Disabilities in Public Schools from the American with Disabilities Act . This presentation was made to the MOSAIC support group in Denver, Colorado on  May 7, 2012 in regard to K-12 education and post secondary education.

This write up pertains only to students with food allergies in COLLEGE.

Sending a child with food allergies off to college is a daunting task and there are many ways to prepare for such; information in this blog post should not be used to argue a specific issue that you may have with a college, but is provided here for informational purposes only.

While it might work for some students with food allergies to deal directly with the college cafeteria staff or college housing office to secure accommodations, this may not be the best route to take in the long run. The college will provide information about the approved accommodations to the teachers and/or the cafeteria staff. The idea is to get a college to view our child’s food allergy as a Section 504/Title II issue and not just a dietary issue to be managed in the cafeteria.

For specific information about students with disabilities transitioning from high school to college, you may want to review:  http://www2.ed.gov/about/offices/list/ocr/transitionguide.html.  And for specific information about auxiliary aids and services at the post-secondary level, see:  http://www2.ed.gov/about/offices/list/ocr/docs/auxaids.html.

A student with food allergies heading to college should begin with the school’s Disability Services Office (or whatever the school calls this service) to find out what medical documentation and/or other documentation will be needed for the child and what accommodations are recommended. It is well to do this long before the freshman school year begins.

Most colleges receive some type of financial assistance through the Department of Education and therefore would be subject to Section 504 regulations (34 CFR part 104, subpart E). Schools that are public entities, for example state colleges and universities, are also subject to Title II of the American with Disabilities Act. (28 CFR part 35). Colleges and universities are not required to provide FAPE (Free Appropriate Public Education), but they are required to provide reasonable accommodations for students with disabilities. Not just academic accommodations, but also modifications and adjustments in the school’s programs when necessary to provide the student with an equal opportunity to enjoy the benefits and services of the schools programs. Cafeteria accommodations can be included, such as ingredient listings of foods and staff training on cross contamination.

OCR expects colleges to engage in an interactive process with students to determine the most effective way for the student to have an equal opportunity of an education. And some colleges will be better at managing this process and helping students manage their disability. That’s why it’s important to start with the Disability Services Office. The approval of adjustments may be in writing. And it would certainly benefit your student to obtain any agreements with the Disabilities Service Office in writing.

The Title II regulation does not require a school that is a public entity to take any action that it can demonstrate would result in the fundamental alteration in a program it provides or in an undue financial or administrative burden. The school has the burden of proving  that compliance with the regulation would constitute such an alteration or adminstrative or financial burden. (Such as a business major student saying they have a disability with math and therefore shouldn’t be required to take any math classes to major in business).

OCR doesn’t express opinions about hypothetical cases, particularly where they do not have all the facts and have not been involved in the interactive process with the student and disability services office to consider all the information available and determine what academic adjustments, if any, would be appropriate.  Generally, OCR does not tell schools which accommodations they must or may provide; they examine the process followed to determine what accommodations are or are not provided and whether they satisfy the requirement to ensure an equal opportunity for the student.  There are some considerations to take into account.  First (assuming there is a qualified* student with a disability), the school would be required not to exclude the student from participation in the any of the school’s programs on the basis of the disability.  Then, the school may not provide services in a manner that limits or has the effect of limiting the participation of the student with the disability.  Of course, accommodations requested and provided must be reasonable.  So, depending on circumstances, it may be unreasonable to expect a school to publish all the ingredients of all foods made available through its food services program.  However, it might be reasonable to expect the school to make a number of foods available and identified as “peanut and tree nut free” or “dairy free” or “free of any seafood product” or something similar.  Again, it would depend very much of the facts of an individual case.

*Qualified individual with a disability means an individual with a disability who, with or without reasonable modifications to rules, policies, or practices . . . meets the essential eligibility requirements for the receipt of services or the participation in programs or activities provided by the public entity.  28 C.F.R. § 35.104.

It was suggested, you may want to take a look at the Title II regulations (applicable to public schools and colleges—can be found on the internet):

28 C.F.R. Part 35, §§  35.130, 35.130(b)(1)(ii and iii), 35.130(d), 35.164.  See 34 CFR 104 subpart E. The principles applicable under the Section 504 regulations are fundamentally the same.

I have observed many students don’t start with the school’s Disability Services Office. They usually start with the dietitian and/or cafeteria staff and then if they have problems they just transfer out of the school.  ALWAYS start with the Disability Services Office.

Lastly, once your child is 18 years old, the school’s Disability Services Office might only speak with your child…not with the parent, to develop a plan of reasonable accommodations in order to comply with the laws ensuring the student’s confidentiality. This is one reason students need to learn to advocate for themselves early in their school career!

 

Posted in College Age with Food Allergies | Leave a comment

Food Allergy & the School Lunch

The US Department of Agriculture oversees the national school lunch program and has a guidance document here.  On page 25 of this document, it states “The school has the responsibility to provide a safe, non-allergic meal to the child if it is determined that the condition is disabling.” Setting forth this statement is one thing – the application of it depends upon educated cafeteria staff, accurate ingredient listings of foods and in some cases good luck!

There are many ways to deal with the school lunch. We have opted for Morgan to ALWAYS bring his own lunch. We are very mindful of eating nutritious food, and the school lunches in our school district are based on a different idea of nutrition! Additionally, with Morgan’s multiple food allergies it has always seemed too risky to attempt finding a safe school lunch.

However, we are probably among the minority of even food allergic parents in our school district. Many times I receive questions from food allergic parents wondering how to create a safe menu for their child to eat school cafeteria food.

My first question to them is what is the motivation? Is it important to YOU that your child participate by eating a school “hot lunch” or is it important to your child? If it’s important to your child find out why. They may feel more a part of the crowd, and that is certainly important. If your child really isn’t thrilled with the idea, then maybe it’s best to send in a lunch made from home.

If it’s really important to your child, your next step would be to contact the lunchroom staff. Your school district will likely have a supervisor over the cafeteria staff who could obtain ingredient information. You could review safe foods and watch for those as they are available on a monthly menu. If your school doesn’t provide such a menu, then you may need to rethink if it’s safe to send your child in to school to figure out whether a food is safe. Remember, looking at a food to determine its safety generally doesn’t work. And taste testing to see if a reaction ensues is horribly dangerous!

Cafeteria staff will need to be trained to not cross contaminate foods. Picking up different foods with spatulas can cross contaminate the entire kitchen. If peanut butter & jelly sandwiches are made in the kitchen, and your child is allergic to peanuts, you may need to opt out of school lunches on pb&j days.

You will also need to find out how the cafeteria will let you know if a product’s ingredients have changed. The menu may have been safe in September, but by February the safe bread roll may come with sesame seeds, for example. Our school district provides a parent meeting in the beginning of the school year for all families dealing with food allergies. Parents can read all ingredient labels of all foods served. The glitch is that there is no system yet available to tell the parents if the ingredients have changed during the school year. And there have been problems with that for the severely allergic children.

Lastly, the cafeteria staff will need to be trained how to properly clean up. If your child can eat a few menu items, you will be relying upon them to clean up after unsafe foods are made in the kitchen area.

It takes a lot of work, and I’ve known too many food allergic children to have reactions eating cafeteria food. Yet some families have managed to find certain safe foods for their child to eat at school, and all is going well. It’s up to each family to find what works for you. After meeting Sara Shannon whose daughter, Sabrina, died at school after eating cross contaminated cafeteria food, Morgan and I decided his food allergies were too severe to take the risk.

Your state or school district may have guidelines for schools regarding special dietary needs especially for those students with food allergies. Check out the resources available and be cautious!

AllerSchool and Allergen Free Eating at School

AllerSchool is a complete end-to-end solution designed for the management of food allergies in K-12 school systems. It helps food service departments and school dieticians to manage complex issues involved with serving everyday meals to students with varying combinations of food allergies and dietary restrictions. is an interview with one of the two creators of AllerSchool, Mr. Dilip Chopra.

Mr. Chopra, can you tell us how you came up with the idea of AllerSchool? Who or what was your inspiration?

The inspiration behind this project was my daughter, who has had food allergies since she was only a few months old.  When she started school, we quickly realized the absolute need to be able to look into the ingredients of the food items served at the school cafeteria. The process of securing reliable ingredient information was so frustrating. We, as a family, started thinking that there had to be a better way! It is not that the school authorities did not want to cooperate with us, but the process of getting accurate information was just not very organized in general. As the years passed by, we came across other parents in similar situations but with children that had different combinations of food allergies, as well as different levels of allergic severities.

It became clear that there had to be a system that could quickly identify problem ingredients and generate safe food choices without requiring parents to go through the cafeteria’s hundreds of ingredient labels. We also realized the challenge that school food officials were facing by trying to accommodate all of the different combinations of food allergies into their daily menus.

As a result, AllerSchool designed to help students and their parents identify safe meal options, taking into consideration each student’s unique combination, and to help the school districts efficiently manage the complex issue of serving their students safe meals. AllerSchool was made a reality with the help of my friend Atul Ahuja, the other co-founder of AllerSchool and the technology architect behind this effort.

Please tell us about AllerSchool and how it works ‘in action’?

AllerSchool is a comprehensive solution with a lot of ‘bells & whistles’, all aimed at making it easier for students with food allergies, their parents, and the school food services departments to efficiently identify safe food choices from existing meal options at the school cafeteria.

Basically, a parent/guardian registers their student and their food allergy restrictions and based on that unique combination of food allergies, the system securely logs the parents on to a ‘parent portal,’ where they can view safe options for their child from the school’s existing menu. The parents are able to view detailed ingredients and can place direct electronic meal orders with the school cafeterias days, weeks, or months in advance.

AllerSchool aids school’s food services departments by automating the complex process of identifying safe meal choices for their students with allergies. It eliminates the process of manually identifying ingredients, including their many food derivatives. These tasks can only be efficiently carried out with the help of automated systems such as AllerSchool.

What do you hope it will accomplish for school districts?

For school districts, AllerSchool has the potential to increase meal revenues by increasing the number of students purchasing meals at the cafeteria. It also can reduce the risks associated with serving the wrong foods, improve parental involvement, and increase operational efficiencies that come with automation. By simplifying some of the complex issues related to food allergies, we hope schools are able to offer more inclusive meal opportunities for a larger number of students with food allergies.

How many school districts are currently using AllerSchool? What do they think about it? Has there been any upgrades or improvements made based upon user suggestions?

The AllerSchool system made its debut in Colorado Springs District11 last fall. Since most school districts implement new systems at the beginning of the school year, we hope to have more implementations this fall. We are currently talking to several school districts across the country which have expressed an interest in the system.

Both parents and the food services departments have expressed great satisfaction with the system. Improvements based on user requests are an on-going process at AllerSchool. We are continually upgrading, improving, and adding new features to the system.

How do you ensure that if ingredients in a product change that parents and students will know this?

The system is  a web-based, “real-time” system. Ingredient changes need to be communicated from the school food suppliers to the school food services and, if there is a change in ingredients, the district officials must make the change in AllerSchool, which is then instantaneously is reflected in all information that is available to parents. The system is in no way designed to replace manual responsibility and diligence at different levels of the food distribution process. Diligence, therefore, is an essential element of the process.

Does your system address cross contact in the cooking process? If so, how?

The AllerSchool system is designed to identify, detect, and interpret potentially unsafe items for individuals considering their unique set of food restrictions. It is not designed to address the issues related to cross-contamination. That falls within the realm of exercising care and diligence that must be carried out during the cooking and preparing processes.

With the AllerSchool system, is peanut butter still being served in cafeterias with your system?

The AllerSchool system has a unique feature that assigns an “Allergy-Friendly Index” (AFI) ranking to all recipes that are served at a given school district. In a nutshell, this is an index ranking that is computed based on the overall macro-allergy profile of a school district. So if peanut products are on the planned menu for a district with a large number of students with peanut allergies, the school food services will see a very low AFI ranking and a “flag” for menu items with peanuts, peanut by-products, and peanut derivatives. It is then up to the school district to decide if they still want to offer peanut products. AllerSchool provides the tools to make such decisions.

Is there anything else you’d like to add?

We (along with D11) were selected as the semi finalists in the Operator Innovations Awards by the National Restaurant Association yesterday. Here is the news link for their announcement.

It is an honor considering we started as just a small grassroots effort and we were selected under the ‘Food Safety’ category for food allergies management nationally. The award also increases the awareness of the subject in the food services industry in general which can only help the efforts of our entire community including FAAN.


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The Tragedy of Peanut Allergy Anaphylaxis

This month’s main article will touch many hearts. Dee Benson, mom to Laura, lost her beautiful 18 year old daughter to peanut-induced anaphylaxis in 2004. She’s never told Laura’s story and wanted to tell all of you about her. It’s heart-wrenching to realize that we really do deal with life and death when managing food allergies.

Dee, tell us about your daughter Laura. What did she like? What were her dreams for the future?


Thanks Nicole for the opportunity to tell Laura’s story.  Laura, like most teenagers, loved being with her friends.  She loved God and was on the worship team at her church.  She had a passion for performing and took every opportunity to sing and dance on stage.  Laura never shied from the spotlight and didn’t mind standing out from the crowd.  Most of her wardrobe consisted of neon colors and clothing she had “improved” with scissors and puffy paint. But above all, Laura cared deeply for people and really invested herself in them. Whether it was staying up all night to make presents for her friends just to show she cared or donating her hair to Locks of Love or pouring her energy into promoting school music programs, she tried to make her little corner of the world a kinder and more beautiful place.

What was your daughter Laura allergic to? How old was she when you found out about her allergies?

Laura had many allergies.  She was allergic to trees and grasses, dogs, cats, dust, and peanuts.  Her peanut allergy was by far the most severe.  When Laura began eating solid foods, my mother gave her part of a peanut butter and honey sandwich, and within minutes her face was hugely swollen.  Later, before Laura turned 2, she had to be rushed to the hospital because she had trouble breathing.  It was at this time that she was also diagnosed with Asthma.

Had she ever eaten peanuts before? Did she experience an allergic reaction then?

Laura had infrequently come into contact with a few peanut products (candy, with peanuts or peanut butter) over the years.  Generally, she would spit them out because she was aware of her allergy and also because she just didn’t like the taste of peanuts.  On those occasions, she would take her inhaler and call me.  I would bring her Benadryl and in a while she would be better.

Did Laura understand about her peanut allergies? Did she carry an EpiPen?

She understood that she had a severe allergy to peanuts, and she took it very seriously.  I did leave an EpiPen with her middle school office, which was never used, but Laura didn’t normally carry an EpiPen.

Tell us about the camp that Laura attended. Had she been there before?

The high school group at her church did a Spring Break service project every year. They went to a camp in Northern California to prepare the camp for summer. They painted and cleaned and had a great time.  Laura had been at this particular camp before and was looking forward to it.

What happened on the day Laura died?

At lunch, one of the camp staff had prepared rice krispie treats with peanut butter, but nobody labeled the snack or informed the kids of the ingredients.  Laura loved rice krispie treats, and it never occurred to her that anyone would make them with peanut butter.  After she ate it, she went to one of her counselors and told him that she believed there were peanuts in the snack and that she was having an allergic reaction.  The counselor told her to go back to her room and lay down for a while.

(Just as a precaution, on the Friday before leaving for camp, I called Laura’s doctor’s office to see if I could get Laura in to renew her EpiPen, which had expired quite a while before this.  The doctor only worked half days on Friday and we were not able to get an appointment, therefore, Laura did not have an EpiPen with her at camp.  She did have her inhaler and I am sure she took that, but she was not given any additional medicine such as Benadryl.)

When she got worse, she went to her counselors again, and that’s when they realized that she needed medical attention.  They called the ambulance, which was several miles away.  Laura died on the way to the hospital.

Is there anything you would have done differently?

Aside from not letting her go at all, I would have required a nurse and EpiPens be available on site.  Laura had filled out her own application for the camp, which stated that she had a peanut allergy (as well as other allergies) and asthma, so the church and the camp were given information on Laura’s condition.

Has the camp done anything differently since Laura’s death in 2004?

I haven’t contacted the camp, but I hope that they would now review all allergies listed on campers’ application forms.

What advice can you offer to other parents of children with food allergies?

Be prepared for emergencies, and enjoy every minute you have with your children.

Thanks,

Dee

Nicole’s Comments: Thank you Dee for sharing this incredibly tragic story. I so appreciate you sharing what happened to your family because it helps those of managing food allergies to learn from you. Dee and I met recently and talked about Laura. Like many teens and children with food allergies,  Laura had never experienced anaphylaxis before this episode. It reminds us all that past allergic reactions are no indicator of future ones and potential severity. From Dee’s comments about what she would have done differently, I’m sure many of us can relate. In the 8 years since Laura has died, there is more education and awareness in many camps, but make sure to have your child’s Health Care Plan/Food Allergy Action Plan in writing; have EpiPens travel with your child always and as Dee said, “enjoy every minute you have with your children.”

Posted in Emotional Aspects of Food Allergy | Leave a comment