food allergies

food allergies and classroom parties

Photo Credit: Amazing and Atopic – THANK YOU!

After the interwebs uproar over everyone’s right (or not) to party in the classroom I decided to finish this article I started writing awhile ago. This is all about how I manage my child’s food allergies in the classroom when it comes to classroom parties. My daughter is now in middle school and through her elementary school years we learned a lot on how to help her teacher’s manage food allergies in the classroom. My son is now in the first grade and his allergies are managed completely differently because his are not as severe.

Every child is different. Every school, school district and teacher is different. These are just general tips to help provide some alternatives to help ease the potential classroom wars over “death cupcakes”.

These tips may also help those with special medical related dietary restrictions as well.

Know Your Situation and Educate Yourself

Your biggest asset and ammunition is going to be empowering yourself with education. Become very informed, knowledgeable and make sure you are clear on the misinformation out there. The more informed you are the better you are able to appropriately advocate for your child.

The first thing you should ask yourself and your child’s doctor is, “How severe is the risk?” – Yes, there is a huge difference between an anaphylactic reaction and an upset stomach. It is important that you always act appropriately in the best interest of your child.

Food Allergies and Classroom Parties

If your child needs an epi-pen then proceed appropriately and know your rights. A life threatening reaction needs extra steps and care to make the classroom manageable and safe. You will want to look into a 504 Plan and discuss it with your child’s doctor. A 504 Plan includes accommodations so that your child has safe access to all school activities in public and even most private schools. It will also include an emergency and health plan to ensure that your child’s needs are met in case of an allergic reaction. With a 504 plan it legally protects your child under the ADA American’s with Disabilities Act. It will become your trump card in situations where you may find yourself frustrated with the lack of accommodations or support from other parents, teachers and even faculty.

If your child has a disability that can be triggered by food then this can also apply towards your situation. Again, seek the advice of a medical professional.

In some situations your child may be best suited with an IDEA plan or IEP. There is a lot of information out there on the differences between all of these accommodations so I am not going to go into too much detail about them.

I also suggest speaking to a local advocacy program that can inform you of your child’s rights within your school district and county. I’ve worked with a couple and they were a plethora of information.

If your child’s food allergies or dietary restrictions are not life threatening that does NOT mean you do not have rights or that you cannot find appropriate accommodations. You will probably have an easier time if your child’s food allergies or dietary restrictions aren’t life threatening – at least that is what I have experienced with my son’s needs compared to my daughters.

No matter what category you are in you should know the following:

What are all of your child’s food allergies?

How does your child need to avoid these allergens? Airborne? Contact? Ingestion?

What medications does your child take?

What are the type of reactions your child has?

How does your child describe their reactions?

Does your child know their medications, dosage and how to administer them properly?

You will want to discuss these things with an allergist and work out the details on what is the best approach for your child. To be perfectly honest – a parent’s opinion doesn’t hold as much weight as a doctor’s request. You will want your child’s medical team to chime in on these facts so that any hurdles along the way you can have that added protection. Don’t expect your doctor to do all of the work for you but they can be a safety net, resource and support system.

After you have a clear picture of what your child needs at school it is time to find out what policies are in place with the school district and school. Sometimes a lot of the concerns you may have are easily resolved without having to do much work.

For example: Many school districts ban classroom food related parties or classroom parties in general. For some reason a lot of people like to blame food allergy families. However, this has a lot more to do with taking away classroom instruction time, liability and education disruption. Holiday parties are also a topic of debate so many schools have opted to remove classroom parties to make it fair for all. If this policy is in place then, hopefully, the school complies with the district policies and that removes any of the battles for parties inside the classroom.

Of course some schools or teachers ignore these types of policies and will allow things to slide. That is why becoming informed is important and proceeding in the way that suits your circumstances.

Some schools ban allergies and are very food allergy friendly. Some schools have found themselves in the news because parents have asked for a child with food allergies to be homeschooled. It is all situational and test scores become the least of our worries when we start evaluating a school for our food sensitive children.

You may wonder what the best method is to gather the information on policies. I go directly to the school district, nursing services and special needs department first. Most schools have the information posted publicly or you can request policies.

Then I approach the school. If you know your child and can explain your situation clearly and show an understanding of school policies and procedures it makes the world of difference.

There is a big difference between what some parents may feel they should get, what their child is legally entitled to and what is possible. Unfortunately, many uninformed and unreasonable parents have made headlines and created big waves demanding accommodations that aren’t possible which can make it difficult to create that clean slate for your child. Yes, we want our children to be safe, included and happy but there is a balance and work goes along with achieving this. It starts with us.

If you act like a crazy freakaziod parent you will probably be treated like one.

Treat everyone at that school as if they are a part of your team and you are all in this together. It is not you and your child against them. Be patient, understanding and strong. I cannot emphasize that enough.

My daughter’s first principal is one of my favorite people on this planet and I mean that sincerely. He was such an amazing amount of support for her. We learned a lot together on our road of managing her very specific, severe and difficult allergies at school. That was a relationship that grew over time and if I acted like a jerkface I am sure it wouldn’t have played out the way it did. Not to say he didn’t see me have some very bad, angry and on the verge of losing my mind moments but the point is that I went into it as this person is my ally – not my enemy. It worked out.

You won’t always find supportive faculty staff. That is just the reality of it. Even if food allergies weren’t a factor there are just some people on the school grounds that you seriously wonder why they are even allowed to be around children. You have to accept that and just know how to work around some people’s quirks and know who you can rely on. You will not be able to get everyone on the team of food allergy awesomeness but you can figure out how to work with them anyway.

Always show genuine appreciation for those on your team who get it and have your back and hopefully you will find more awesome team members than sucky ones.

I also suggest doing all of this before your child begins school. Start early, prepare long before most kids enter school and before you start going to kindergarten tours. It is also good to get the ball rolling early so that the school may be able to place your child with a teacher that doesn’t have a heavily food focused program or one that is just known for being especially accommodating for special needs. It is better to get matched to the right teacher for your child than try to change one who is the worst match possible.

Believe me, I know this from experience.

In the Classroom – Teachers Rock

Your child’s teacher is going to become one of the most important people in your lives for that entire school year. When your baby isn’t with you he/she will be with their teacher. That teacher has anywhere from twenty to well over thirty other students to take care of, wrangle, educate and inspire. Teaching is not an easy job and I respect my teacher friends and family completely because they deal with more insanity than we can’t even imagine.

I’m not a butt kissing kind of person. I’m too authentic for that. I’ve had anywhere from texting/facebooking/socializing friendships with my kid’s teachers to cordial volunteering and holiday gifts relationships. I bring this up because I’ve seen on forums that parents should bribe and kiss a teachers butt for preferential treatment.

I’m against this whole butt kissing to get what you want attitude in school completely. I do think you can respect a teacher, be helpful and adore everything they do without being a fake sycophant.

Having said all that I do think that parents should be exceptionally generous to our rockin teachers when it comes to gifts. Why? Simply because they deserve it not because parents should be crawling up their butts.

What does a teacher really need from you?

Patience first and support next. Your child’s teacher is going to be the person who is going to have to be the buffer between other parents and the classroom. If there is any flack for policies or accommodations because of your child’s food allergies then the teacher is going to get it. The teacher is going to need you to be patience and supportive in any way you can. Sometimes things may become difficult for you, your child and the teacher so they are going to need you as much as you need them. It’s not easy to advocate for one in a crowd of thirty even if it is their job.

If possible volunteer as much as you can and especially during field trips and class parties. Don’t be a pest about it but be present, helpful and full of awesomeness.

You will want to discuss how your child’s teacher manages food related parties in the classroom.

What is the policy on classroom party or holiday celebrations?

What about birthday parties?

If parties are allowed then you have to weigh two things – if your child has a severe allergy do you want to push for a no party policy OR can a non-food related party option be offered? What about store bought and approved allergy friendly foods that are safe for everyone to eat? What if they party outside of the classroom and you provide alternatives? The goal is to keep the learning environment safe first.

My son’s allergies are not as severe as my daughter’s. Ever since preschool I have offered allergy friendly snacks and provide them. His teachers keep the snacks on hand and he is happy to have his own treat when other food is offered that he cannot have. I am fine with this. He is fine with this. A lot of parents ask me what allergy friendly goodies they can provide for him for birthdays and holidays and I am beyond appreciative of it. I don’t demand it. It works for his situation.

My daughter is a different story. She cannot physically come into contact with some of her allergens without breaking out in hives. If she touches that allergen and it gets into her mouth, eyes or nasal passages it can be fatal. Classroom parties cannot happen around her. Period. It can kill her.

Alternatives have been parties outside, on the grass or lunch benches, at the end of the day before school lets out where she has a treat she can safely have that we provide or everyone gets an allergy friendly snack. Her classroom has to be free of the allergens so when she is sitting at her desk to learn she can learn without being at risk. Yes, this has cause some serious problems with pushy parents and not so strict teachers. This is where her 504 Plan and IEP became necessary.

Once a parent had pushed a classroom party with food that wasn’t safe, the teacher folded, money had already been collected for this unapproved party and my daughter was going to be in a very high risk situation. I was furious. She was devastated. Canceling it would have meant possible social backlash for her and myself because of the parents behind it. The party was outside, my daughter and friends got to party with the principal for an hour and it all worked out. It was a choice to be flexible and find an alternative and it worked out.

It also never happened again.

I try to do everything possible to offer reasonable alternatives that make peace because she’s gotta learn to be flexible while being a great advocate for herself. Life is full of choices and she does learn that sometimes situations aren’t accommodating but we can find kick butt solutions that are more fun anyway. Be open to reasonable alternatives that don’t put your child at risk.

Unfortunately, not everyone is reasonable so sometimes I throw down her disability rights card over their death cupcakes and they can juice up on the hate-o-rade all they want.

Popsicle parties are a huge hit. A bigger hit over cupcakes and donuts on a hot day. Allowing younger children to have a bubble party on the grass before school lets out is also a hit. A special reading time, pajama and movie party or even an “electronics day” are awesome alternatives. My point is that the possibilities are truly endless that a school celebration doesn’t have to focus on any kind of food.

Sometimes teachers want to offer a class party as an incentive and it is part of their lesson plan so try to work with them on it. I have, on many occasions, provided the teacher with snacks for the entire classroom that were allergy friendly so that he/she did not have to worry about reading ingredients or making a mistake. I donate these to the school or classroom and I am happy to do so. I know that not everyone can make this happen but if it is within your abilities then it’s a wonderful way to give back to the school.

I can’t set out an exact plan for you or your child when it comes to school. There are just way too many variables and circumstances. I find that every year changes for us so I can imagine you are all dealing with an ever changing deck as well.

My approach hasn’t been without hurdles. It’s far from flawless. I am the first to provide as many reasonable alternatives, resources and support but I am also the absolute first to throw a verbal choke slam down and sprinkle it with some word-fu as needed to make sure my daughter is safe. My daughter’s health situation is very difficult and life threatening. On top of her having food allergies she also has juvenile idiopathic arthritis, an autoimmune disease, eczema, asthma and chronic urticaria. She is a happy, thriving and amazing self advocate who has known a lot of unfortunate struggles. I never thought she would be able to attend middle school safely but she is now.

Food Allergies and Classroom Parties

The biggest compliments I’ve ever received have to do with how amazing, well informed and strong she is when it comes to her health and struggles.

I’m not a medical professional. I’m just like every other allergy parent out there. All I can offer everyone reading this is some insight into our world and hope that it helps in some way. It’s not easy and I’ve been on this road for awhile now and will continue ninja kicking, with my allergy princess of doom by my side, to happiness in this seemingly selfish death cupcake filled world.

Oh and feel free to comment or drop me an email with any questions you have about food allergies. I can offer advice, support and encouragement to help our ever expanding food allergy community.

Thank you all for stopping by.

Live, laugh and ninja kick.

ninjakicktodayintheface

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Birthday Parties in the Classroom

When a food allergy debate pops up on the interwebs I start getting flooded with links and my awesome people asking me how I feel about it or asking if I will chime in. The scenario is usually the same – Someone out there is annoyed that his or her child cannot bring what they want to school because of someone’s food allergies. This week Carina Hoskisson on Huffington Post is asking why my child’s allergies mean she cannot bring her homemade death cupcakes to school for her beloved child’s birthday.

Update: The same article was also posted to “Today’s Mama”. 

Well, she isn’t asking about my daughter specifically, but very well could have so I decided to answer directly. Carina, let me clear up some obvious misconceptions you have about this topic and maybe give you some insight so you, along with your friends, can stop whining about this potentially fatal topic.

“All over the country parents are being asked to accommodate the specialized needs of other people’s children thanks to the skyrocketing number of food allergies and food intolerances. (They both have similar symptoms, but intolerances are generally considered less serious and not life-threatening.) “

Correction – Parents are being asked to accommodate the specialized needs of children who have a disability and need to have a safe, secure and functional school setting so they can attend for the purpose of school. That purpose of school is to learn, not to eat cupcakes or celebrate your child’s birthday party. It doesn’t matter if there was one student or twenty in the classroom – their disability and legal rights trumps your preferences for birthday parties. Period.

You can throw a pity party with cupcakes over that fact if you want.

Additionally, reactions to food allergies and a food intolerance are very different. One should not be taken more or less seriously than another. Intolerances should not be considered less serious because you are assuming there isn’t an autoimmune disease that is triggered by said intolerance. Ultimately, it is irrelevant if it’s an anaphylactic reaction or an intolerance because both are an unfortunate disability for that child. Don’t make light of either of them because you simply don’t understand the difference. We live in the age where information is at our fingertips any time we want – use it.

“To a certain extent, I get it. “

No you obviously don’t…. But, nice try.

“I would never endanger the life of a child over a peanut butter cookie; that would be ridiculous.”

Then you are obviously ridiculous because you contradict this attempt at making yourself not seem like a selfish person who cares more about the type of cupcake you want for your kid rather than the well being of a child. Or did you mean you would only accommodate over a peanut butter cookie and not any other fatal allergens?

“My children’s school requires that we only provide store-bought treats because some children have allergies or dietary restrictions.”

You are misinformed and assuming on this one. Most school districts along with PTA policies state that any food brought to the classroom for celebration or part of an event has to be store bought and pass safety regulations. This has to do with liability. Same goes for school events when they have to research vendors who are serving food. Your lovely, homemade, buttery, gluten-stuffed cake may give the kids food poisoning. No one wants their children being fed listeria, e coli or salmonella no matter how delicious you claim them to be.

“I don’t always get to eat what people are serving, but I certainly don’t demand that my friend make me a separate cake for me on her birthday.”

Your egg white allergies and sainthood for not demanding that your friends make a separate cake have nothing to do with what is appropriate inside a classroom. It’s honestly a little pathetic that you would even try to compare the two just to make you seem like you “get” it.

“Some schools have even gone the route of banning all classroom birthdays and celebrations, which is ridiculous.”

Actually, a lot of school districts banned classroom parties because they take up valuable classroom instructions. All schools should ban classroom birthday parties from school NOT because of food allergies but because children are in school to learn not to eat your damn cupcakes for your child. Why is the classroom YOUR platform to have the party you deem worthy of your kid? Why do you feel entitled to take away an hour of instruction from twenty to thirty other kids because you want them make your kid feel special? You think it’s selfish for your child not to eat cupcakes or whatever crap you want to bring, but a lot of people don’t even want their kids eating junk food or taking away classroom time for your kid.

The classroom is not for your celebrations no matter what the occasion. Have a party at the park after school. Prepare whatever the crap kind of cake you want in your home and have thirty kids get hopped up on sugar on your own time and dime. It’s not the school’s responsibility to host your child’s party, but it is the school’s responsibility to keep their students safe.

“However, my kid shouldn’t have to forgo his birthday cake because yours can’t eat it.”

“The fear of one shouldn’t outweigh the rest.”

“Let’s stop the allergy insanity, and let the rest of them eat cake…”

This is where I lose my temper on people who have little common sense or compassion for others.

No one is telling you to forgo your son’s birthday cake because another child can’t eat it. You are being asked not to do it in the classroom that would harm another child.

I will be very blunt about this – Your child’s birthday cake does not mean more than my daughter’s life. If you truly think that your death cupcakes are more important than a child’s life, then I am so thankful not to know you. It makes me sick that parents would try to fight to put my daughter’s life in danger over a birthday party at school.

Your child’s birthday party in the classroom could easily take away the rest of my daughter’s birthdays. Could you live with that? Or would you just justify a tragedy like that with “Well, it’s the girl’s fault for even being in my kid’s classroom.”

Your view on how your child’s birthday should be celebrated in a classroom is completely selfish, uninformed and you should be embarrassed for sitting down at your keyboard and whining about it. You should seriously stop whining about how hard the world is for your child’s birthday party to be inconvenienced because of food allergies and maybe be a little thankful that this is the least of your worries in your, obviously, perfect world.

The road of food allergies for my daughter has been filled with people like you and I have gone out of my way to do everything in my power to work with other parents, make sure she is safe and even throw down her legal rights over their entitled preconceived notions. Ultimately, we always win and situations like this help me weed out the people who are not worth our energy. I am constantly thankful for the caring, open minded, selfless and compassionate people in my life that don’t even flinch at any accommodations they CHOOSE to make for my daughter’s safety.

They love her that much not to be such a jerk over what she cannot control and that could end her life.

I do not know you at all. I am trying so very hard not to judge you. I’m simply going off of what you have put out there in your article which, to me, just screams “Yet another uninformed, entitled parent, who doesn’t want to think outside the box and they want to bitch and moan over the world not being the way they want it to be”. I do hope that you can see outside your misinformation and assumptions and maybe grow a little more from this.

However, if you still think that your child’s cupcakes inside the classroom are more important than my daughter’s life then I will gladly show you multiple things that you can shove somewhere uncomfortably. 

I’m not going to apologize for my tone, harsh words or visuals. They also make me laugh despite how angry I am.

For everyone who gave me a heads up about this article – Thank you. For all of you who I know through my blog, or “real life” who have been cheering my daughter on or appreciating how much I advocate for kids who deal with people like this or those who are in the same boat as us – this is all for you.

For my not so baby girl who now reads my blog regularly and helps encourage me to keep fighting the good fight for her – I love you and your health hurdles have never been and never will be anything negative in our world. They are simply you and nothing more. Don’t let people like this hold you back or get you down. You are an amazing self advocate who is compassionate, caring and a better person for the struggles you have had to face in a world surrounded by people like this. I’m proud of you. Focus on the rad people out there who have your back. Oh and please… clean your room! 

Thanks for stopping by my ninjas. Let’s all keep living, laughing and ninja kicking to happiness and a, hopefully, more compassionate place.

Update 2/23/14: I decided to finish an article about how I manage food allergies and classroom parties for my children. If you are looking for some insight on how we make it a success and overcome hurdles hopefully you will find it of use. Thank you all for the amazing response to this. 

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Walk a Mile in My Shoes or… Not?

It has been said many times, “No one understands what severe food allergies are like until they experience it themselves.” But, I think it’s more accurate to say that those who don’t understand is because they don’t want to experience it or ever care to. That may seem harsh or mean but if someone cared enough to understand the painful reality of someone else’s path then they would try. 

When my daughter was diagnosed with life threatening food allergies I was prepared to do what was necessary to keep her healthy and safe. What I wasn’t prepared for was the amount of negativity, judgment and asses out there that would, for whatever reason, had to fling their nasty word poo at us like angry entitled monkeys.

That visual? Freaking priceless.

Thankfully, but unfortunately I suppose, I grew up with tough skin and learned at a young age how to deal with people who just like to be mean and feel entitled. It wasn’t something I expected to use to defend my infant, toddler and now ten year old daughter.

I’ve had minor food allergies and eczema since I was a kid and watched my brother, cousins and relatives deal with similar my entire life. At that time, I thought that defined what food allergies were because that was the extend of my experience. No one had life threatening food allergies in my family and I hadn’t heard of an EpiPen until my daughter was a month old. No one I knew could possibly die from anaphylaxis shock if they ate the wrong food… everyone just got uncomfortable when they ate something they shouldn’t have and benadryl fixed it.

So, I get the not understanding something when you don’t experience it first hand. But, is that a valid reason or just an empty excuse to just not care? And regardless of the not knowing or not understanding… why are some people so vile? Why can’t they just be cool or leave it be?

These are not the shoes you expected but you learn to walk in the just the same…

When your life goes from having a vague understanding of something to living the truth of it, everything changes and you don’t usually have time to try to adjust. I wish my daughter did not have the hurdles she constantly faces but it has become a source of strength, resources, humor (we have to laugh about it) and inspiration…

It also became a source of WTF moments and frustrations when it comes to other people and their opinions.

Changing our diet and lifestyle so that it was safe for her seemed like a logical step. Certain foods can kill her so keep those foods away. Simple for us, however, a source of annoyance, judgment and anger for others.

Some of you may be wondering why my daughter’s food allergies are a source of negativity for anyone? Well, I’m still trying to figure that out and I probably won’t ever understand it completely.

I spent many years being angry and resentful towards others who were so wrapped up in their own selfish worlds that they could not have sympathy or compassion for a girl who could die from their death cupcakes. I just accept it now. Okay, I accept it, shake my head and want to shake them but I won’t waste my time on them. No one will listen to what I have to say if they aren’t even willing to hear something other than their own voice.

I won’t just take it from them and I won’t stop advocating for my kids. I have just reached a point where I accept that some people just do not get it or do not want to. This holds true with most topics for people on opposing points of views but to prevent me from getting ranty I will just stay on point with the food allergy thing.

Did you really just say that?!

I have heard ridiculous accusations since becoming a mother of a kid who has life threatening food allergies. I never pretend to be coy in these matters and I’m sure I could handle things better. If someone has the nerve to press my mama bear buttons when it comes to my children or the people I love there is little room to backtrack. On the other hand I do have a deep, yet annoying, understanding that some people just don’t get it and I try to educate rather than berate.

I’ve mentioned on twitter and facebook some of the insanity that people have said and was shocked at how many of my ninjas were shocked at anyone saying these things. It’s become such a sad expected response that when it’s not an issue I’m pleasantly surprised.

So, I decided to make a little list. I’m not going to go into details on who said it or what I said… just some internal monologue for kicks. Yes, these things have been said to me or about us and many of which were said more than once.

People are so rad.

“There is no such thing as food allergies”Yes, no such thing. There also isn’t a clue in your pea-head.

“No one can die from food allergies”Absolutely, tell that to the grieving parents, widows and siblings who have lost someone to anaphylaxis shock.

“What did you do when you were pregnant to make her like this”All I can say to this is that the visuals inside my head were like a scene from Matrix, Game of Thrones and Dragonball Z combined.

“You just need to toughen her up with the food she is allergic to and give her more of it”Nothing says ‘toughening up’ like angioedema, urticaria and anaphylaxis. People who claim this toughening up nonsense never know what those three words mean and that always proves my point.

“She is making it up for attention” - … What is wrong with people?

“How do you deal with it?”This one isn’t so bad depending on the situation but I felt it should be mentioned. How do you deal with a child who doesn’t want to go to sleep? A picky eater? A cold? A sudden change of plans? A restaurant not serving your favorite meal anymore? You just do and some handle it better than others. I don’t handle everything the best that I could but I try damn hard to.

“It’s not fair to XYZ to have to go without these things because of her”Apply this to me, siblings, my family, her classmates… It is said or implied many ways and often. Sometimes it’s much more pointed and accusatory while others it’s honestly innocent or purposely passive aggressive. When it comes down to it, I feel, the priority goes to the person who could lose their LIFE over a decision where others could just be inconvenienced. If it wasn’t my kid who was teetering on that death line the answer would still be the same. Life is always more important than inconvenience.

“Why would you want to have more children who could end up like her?”I’ve never gotten over this one and probably never will. I hope all my children and the children in our lives “end up like her”. She is kind, strong, funny, social, outgoing, polite and a bit insane (in a good way). Sure, she can be lazy, argumentative, bold and tries to go against me at times… because she is a ten year old going on diva. My daughter isn’t “the allergy kid” or “the one with the autoimmune disease” and never “the sick kid”… she is just my kid. I love her endlessly and unconditionally and when she damages my calm I want to rip my hair out just the same. Yes, it had and has crossed my mind many times what the roll of the dice could be if I had another and I just look at my son who has mild food allergies, mild asthma and mild insanity. He is insane because of his personality not because of an illness. I could have another who could be in his shoes, hers, neither or worse. Regardless, does that mean I shouldn’t raise amazing people or expand my family because there might be a health hurdle or two? If so then how come these same people with that judgmental tone aren’t evaluating their genetic lines and choosing not to breed because of a possible genetic issue? If I birthed another child who had the same, or worse, health hurdles as my ten year old princess of doom, then, we would simply be more prepared. If I knew everything I did then, that I know now, I would have saved myself a lot of sleepless night, tears and gray hairs.

“Don’t you miss (insert food allergen here)”I would miss her more.

“Isn’t it hard that she isn’t a normal kid?”If you look at her grades, the mess she tries to hide in her closet, her collection of knick knacks and the music she insists on torturing me with then yes, she is exactly like every other kid. If you look at her health records, diet, supplements and medication then no… I guess not. When she was an infant everyone thought it would be too hard to travel with her. We have been to or through half the states in the US. It was assumed she would not be able to go to school, participate in activities or have a ‘normal’ social life… well, she goes to school (not without hurdles), she is involved in whatever activities she wants (yes, I have to manage, lead or be active in the most of the time) and she has more awesome friends than we are able to juggle on her social calendar. She is a normal kid with some extra stuff thrown in.

Damn them all! Or Damn the Man and Save the Empire!

I could talk to every judgmental, opinionated or downright malicious person who has ever uttered a word of judgment on my daughter or I and explain, in detail, with doctor’s records and proof of everything we go through… but it wouldn’t make a difference. Yes, it’s draining and it sucks to have to deal with so much of it. It hurts, it damages and it causes massive problems. I can’t change the fact that those people will always be there. Some may stop their negativity but there will always be more.

All I can do, and all I can teach her to do, is accept that there are people who will support, understand and accept her and there are those that won’t. We can’t change those that won’t because they don’t want to be anything other than righteous and set in their ways… and that is fine. Let them be. No matter how much proof, struggles or inspiring moments someone won’t see the truth of it if they don’t want to. We can’t waste our time on people who, in the end, won’t reciprocate positives in our lives and only weigh us down. We have to accept them and move forward.

There are exceptions to the rules, of course, and my blog has been a seed for that growth. I’ve had countless emails and messages from those that have been changed or inspired because of what we share and those are moments I absolutely relish.

And on the other hand I have had my fair share of flaming, anger, drama and weirdness. Eh, I prefer to delete those and look at the awesomeness… and yes, sometimes laugh at it. Okay, I laugh at the ridiculousness a lot and make fun of it with my friends. It’s how I deal with things… and it makes me laugh.

I would rather be laughing than fighting pointless battles in a pissing contest of who is right and who is a jackass. I also want my kids to learn to let those things go and be happy no matter what. I will come in and lay a can of whoop ass on the table if I need to in order to protect my kids… but the small battles? It’s just not worth the energy spent. They can either choose to accept and be a positive part of things or kick rocks.

If you find yourself dealing with similar situations, and not just with food allergies, with anything. Just remember, your life is your choice and no one can control that. They can try, but in the end, how you deal with every situation and how you resolve them are up to you. There is a lot of negativity, judgment and jerks in the world and nothing will change that. Just sidestep it, don’t get sucked in. Let it roll off your shoulders the best you can and keep moving forward to find your happiness because it won’t be defined by someone else’s bitterness or judgments.

Even I lose sight of that sometimes and get weighed down by it. Then, I need a reality check and a kick in the ass and remember that life truly is too short to be miserable. I’d rather be laughing, making the most of it and getting through it.

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Post image for Chronic Urticaria (Hives) and How My Daughter Deals With It Better Than I

Chronic Urticaria (Hives)

Earlier I posted a picture of my daughter’s urticaria aka hives on Instagram. It’s not my usual funny faces, nature and random acts of silly I put out there but there was a reason. I got some amazing feedback and a couple people who thought it was wrong I posted it because it made them uncomfortable.

I get that… it makes her uncomfortable too.

It was a mild reaction, thankfully. When I picked up my daughter from school she was her usual happy, brave and optomistic self but I can always see that look of fear behind it all. When the benadryl kicks in her stress levels (and mine) drop. The school secretary always compliments us on how amazing she handles these hurdles. That means the world to me.

These situations are not easy in the slightest. As much as I am freaking out on the inside I deal with it all very matter of fact, with a smile on my face and try to keep her calm. A reaction can go from okay to really bad quickly and we have to be able to deal with it as it comes. Not a situation where I should be losing my shit.

Seriously, I want to run around screaming – freaking out – yelling and fall apart. Hives can turn into anaphylaxis shock and she could die from it. However, I have to be cool. I wasn’t this time. As soon as we got in the car I started crying. She isn’t used to that. I knew she was okay at that point and I explained I was just mostly sad for her. She hasn’t been doing well lately and right when we had a couple of weeks of being on the seemingly upswing this came out of nowhere.

To quote Rory “Pond” from Doctor Who: “Oh god, I was going to be cool. I wanted to be cool. Look at me.”

I actually said that and it made her laugh and broke my moment of uncoolness. I’m so thankful that my daughter loves Doctor Who. She even said “Hey! That is what Rory said in a Good Man Goes to War!” (I am so proud)

Anyway,

She has idiopathic chronic urticaria which basically means she gets hives constantly often from an unknown and unexplanable source… sometimes.

She also has life threatening food allergies, mild arthritis and an autoimmune disease.

Yet, she is the happiest kid you will ever meet and stronger than most adults I know.

When she gets a reaction a few things go through my head. First – is it going to be an anaphylactic reaction? What caused it? How is she feeling emotionally and physically?

We discuss what happened or what may have caused it. I take notes, pictures and write down any pertinent information. We decide what needs to be changed if anything. Then we find a way to distract from the moment while her medicines kick in. If it was a severe reaction we would be off to the emergency room…

Thankfully, it rarely comes to that since we have control over what we can.

But, there is always that wild care with the idiopathic chronic urticaria. We just have to make the most of what we can.

When she had the reaction this week and took the picture for our records she asked me if I would share it online. I hesitated. She explained that most people don’t understand what she goes through until they see it. She knows that I explain what she goes through but it’s different if you see it. She compared it to “reading novels” compared to comic “graphic novels” and how what you picture in your head may not be the way the writer intended.

My ten year old girl is wise beyond her years.

Anytime I talk about her health on my blog she gets full editing rights. She has reached an age where she is taking a big step towards advocating for kids who feel a little different. She is brave, strong and loving… I’m now in a position where I guide her through this and heed caution when needed. It’s honestly beautiful. I sincerely hope that sharing these low moments are insightful. When we share the good moments that we grasp I hope they are inspiring.

Either way… thank you all for being a part of our world of madness.

I am writing an e-book about food allergies (there will be a few of them because it’s a lot to cover) and she is now a big part of the process. It’s always had to do with her story and our struggles but she is giving me so much insight and perspective from her point of view. I love that I can include that. 

 

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Everyone Has Misconceptions About Egg Allergies… Even Me

When I was a kid I knew my brother, some cousins and a few friends had an egg allergy. I remember one of my cousins telling me that she can’t eat a scrambled egg because it will make her skin itch but it can be in baked foods and she is fine.

I thought she was crazy for that.

I had, until recently, mild food allergies my whole life. If I ate too much pork I would get a little itchy. Nothing major. I knew it could be harmful but I hadn’t experienced that first hand.

I always figured that if someone has an allergy to something like eggs then it’s as simple as just not eating them. But, it is much more than that.

How Severe Can An Egg Allergy Really Be?

When my daughter was a month old I nursed her after eating eggs and she broke out in hives and went into anaphylactic shock. I knew she was probably allergic to eggs and maybe other things I ate that day. That moment changed me. I didn’t experience the physical reaction myself but it was a feeling that can’t be erased. That is where our journey from her egg allergy began.

She was an infant and I was on an allergy friendly diet when she was nursing. I picked a few veggies and meats out of a chinese egg noodle dish. I didn’t think the small contact would be an issue. She spent the night in pain and covered in hives. I didn’t make that mistake again and I learned about cross contamination.

I made scrambled eggs when she was a toddler. She was on the other side of the room. They weren’t done cooking and I hadn’t gone near her when she started screaming. She was breaking out in hives and having difficulty breathing. It was her egg allergy. She was so sensitive that the tiny proteins flying through the air were enough to make her break out.

Eggs were no longer cooked in the house.

She ate off a plate and her hives, pain and crying were terrible after that meal. I discovered that the last food on that plate was a breakfast burrito and it just wasn’t washed well.

She snuggled on her grandpa’s bed and watched TV with him when she was five. Her head rested on him. Within an hour she started to scream. Her eye and eyeball had started to swell. I rushed her to the doctor and we were all in shock. We flushed her eye, her benadryl had kicked in and she was fine. Turns out he had eggs and toast for breakfast. We could only assume it was her egg allergy.

I didn’t even know most of these things that happened to her were possible.

When Egg Allergies Change and so Does the Research

My daughter’s egg allergies were off the charts along with milk. They have always been the scare-me-to-freaking-death allergies. The slightest exposure to eggs caused her to have serious reactions.  I couldn’t keep them in the house and dining anywhere that cooked eggs was a risk… I always had to stress to them how important her  egg allergies were.

The reactions were so extreme that people thought I was crazy and making it up. I would simply say screw them but understood that it was something you had to see to understand.

But, I should not ever have to justify the measures that I took to keep her safe. People are going to believe what they want. I can’t change it. Makes me less stressed being able to accept that. I’ve just always wanted to see those allergies drop so they weren’t so scary.

A couple years ago there was a slight drop in her egg allergies. It was very very very slight. But that drop was something I noticed. It didn’t even drop a category but it was the first glimmer of possible hope.

Slowly that egg allergy dropped on her tests. I didn’t even talk about it. I was sure it was going to go back up. We wanted to be sure. Her allergist and immunologist and I had talked about the advancements in Oral Immunotherapy and how they are proving that most people with egg allergies can tolerate eggs in baked goods.

When egg is cooked for at least 30 minutes at a high temperature it breaks down the protein that causes the body to have an allergic reaction. It’s as if the body doesn’t recognize it.

He felt she was now ready to start introducing egg in her diet following strict procedures. Usually, a food challenge would happen in a clinical setting but he was confident we could do this at home since he feels I am educated, capable and trusts I can follow the procedure.

At that moment I told him I wished I sucked at this and he should just make me do the challenge in office. He laughed. We could have but why drag out a 5 hour procedure in the hospital when we have options?

Please do not ever try anything on your own without consulting your doctor. Ever. 

Egg Allergies and Food Challenge aka OMG I WANT TO FREAK OUT BUT CAN’T

I bought organic, free range eggs for the first time in ten years. I placed eggs in my own refrigerator for the first time in ten years. I baked with eggs instead of applesauce. I cracked an egg… which I lost my touch! I had to fish out shells. I was still in paranoid egg allergy mode so I immediately tossed out the egg shells and wiped everything down. I cleaned up every bowl and utensil as I was done with them.

The gluten free brownies went into the oven and I made myself busy.

I was freaking the frack out on the inside but on the outside I was trying to be cool.

I will save all the details of the boring procedure of the food challenge. Needless to say she passed.

SHE FREAKING PASSED.

My daughter ate eggs for the first time in her entire life.

And when it was in the clear and we knew that she was for sure okay. We started to cry. I cried harder. She was crying for joy of all those things she will be able to eat and I was crying for feeling a huge weight lifted off of us.

It will be some time until she can eat a scrambled egg. The egg allergy may go away entirely or it may come back in full force. We just don’t know. Which is why we focus on the here and the now. Right now… it’s freaking amazing to say that her egg allergy is easier to control.

I shared this on facebook and the 125+ likes and dozens of supportive comments meant the world to us. I always show her those supportive responses. To all of you that stop by, read our updates and are a part of this journey we are forever grateful. You all rock and are the reason I share these moments. Thank you for all the awesomeness.

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You Don’t Expect This with your Infant

Food allergies are not unknown to me as I have battled my own minor allergies and watched my brother struggle with his allergies and eczema our entire childhood.

Does anyone ever expect their children to be unhealthy? I think we focus on what will they look like? Who will they take after? Will they have my big feet? Will they love me?

You don’t wonder… will my child be born with a life threatening condition like food allergies? Or will my child’s skin be so sensitive that they bleed, scar and spend days crying in pain?

We know about these things but we don’t really dwell on them. Or, we try not to.

At a month old my daughter broke out in hives and went into anaphylaxis shock from nursing. I was holding my infant and she turned all shades of colors, swelled up and broke out in hives.

I will never forget that terrifying moment.

Figuring Out How to Manage Allergies and Eczema isn’t Easy

I went on a food elimination diet to figure out what she was allergic to. It was over 20 things by the time she was a year old. There was no formula on the market that she wasn’t allergic to so I had to nurse (which was better for her anyway) and I had to be on her diet. Boy was I skinny!

She was so sensitive that if I cooked eggs in the house she would break out. If I touched cheese then touched her then she broke out in hives. If friends came over and sat down on our couch and she sat on it after them she would break out because of the different foods, outdoor allergens or pets they were exposed to. Dyes, caffeine and medicines caused adverse reactions.

It sounds crazy. I felt crazy. Each day presented a new challenge.

She had terrible eczema. The kind where her skin bled and she couldn’t stop scratching. She could only wear cotton. Do you know how hard that was? Organic was preferred but back then it was so expensive. I had to sew gloves and socks to her clothes so she couldn’t get to her skin and scratch them. No matter how hot it was she had to be completely covered. I barely slept when she was an infant and toddler because I would wake up trying to keep her from scratching. She has scars on her legs, feet and arms from her infant eczema. It’s fading over the years and looks like a faint discoloration in areas but it still breaks my heart to see remembering the pain she was constantly in.

Doctors only wanted to pump her full of medicine that would cause long term damage and one even told me that children with these extreme issues don’t often live full lives because there isn’t much that can be done. He said that kids who can’t experience a full life, who spend it isolated also develop depression. Everything out there in the world and everywhere we go is centered around food. It was impossible, he said.

I refused to accept that. I was told these things often. Medicate, give steroids and pump her full of medicine and deal with the long term side effects later.

I saw what traditional medicine did long term and I wanted a solution not a medicine to cover up symptoms. Not an isolated life. All of this just sounded like bullshit.

Not Accepting Limitations and Never Giving Up aka Why I Believe in Ninja Kicking

I wanted to figure out how to let her live a full life where her body could grow without an insane amount of medicines and her to be healthy one day.

I wasn’t told it was impossible just improbable. It was assumed to be too hard.

I studied. I became active on forums and I learned as much as I could. I charted everything she ate, her bowel movements and her sleeping patterns. I was able to determine a soy allergy based on the change in her bowel movements and sleeping patterns before her blood tests came back positive. I realized how much of what we consume directly influences our bodies, mind and temperament. I went through a lot of shit doctors and I, thankfully, found some amazing ones.

I had found an allergist who worked closely with a wellness nutritionist and homeopath. I went into that appointment when she was a toddler expecting to get a mountain of knowledge and direction. Instead, I was given confirmation that exactly what I had discovered on my own was what I needed to do.

Even the supposedly extreme measures that some people thought I was crazy over. Things like not allowing friends to bring food inside my home because my daughter could get sick from it. Or expecting friends to wash their hands when they came over. They thought I was being a bitch and it was all in my head. I don’t miss them.

I found solutions. When I took her to the park I wiped down the swings so there weren’t issues with allergens. I had a blanket that she would use on the slide. We never sat on benches but I always had a picnic blanket. When we went to an amusement park or museum then we avoided food places and I took extra precautions. I just made it work.

If others judge me for my choices all I can ever say is they have no idea what it’s like to be in my shoes. I don’t ever want anyone to pity my journey in motherhood just as I don’t want anyone to feel sorry for my daughter. We are better for it. We are stronger for it. I would not be the same person that I am had I not been down this road and she would not be the same amazing kid she has become. A kid who still has typical flaws like attitude, not cleaning her room and “forgetting” her homework.

Yes, it sucks that anyone has to endure some kind of pain and I would never wish this journey on anyone. I refused to allow it to be a crutch for us no matter how hard or isolating it was. I refused to allow her health hurdles to prevent her from having a life like any other kid. We have accomplished just that to the point where daily considerations over her health are as natural as breathing.

Allergies and Eczema Studies Are Finally Making Progress… And so are my daughter’s

When it comes to allergies and eczema we only have two solutions: Avoid and Suppress. Avoid all your allergens (which actually is easier than you may expect) and suppress the reactions. Those options kind of suck.

Sometimes the body “forgets” it is allergic to something. It is less reactive and on alert. This is part of the way a person will “grow out of” an allergy.

Now there is a new way. Oral Immunotherapy which is basically giving your child a small amount of the food they are allergic to and over time it builds up a tolerance. This study has been done over the years and researches have confirmed this year that egg is among the allergens that are successful in oral immunotherapy.

When eggs are cooked at a high temperature for at least 30 minutes the egg proteins break down so the body doesn’t recognize them as egg proteins.

Over the last few years my daughter’s egg allergy has gone from off the charts high to a category 3 and now a 2. This is amazing. It’s huge. I honestly never thought I would see a drop like this in an allergy that I couldn’t even keep in the house! I never thought we could eat so many different foods together. I didn’t expect her to have so many options. She went from over 20 allergies and slowly started to “grow out” of them over the years. Now she is down to around 5. It always changes and always will and we embrace that. And we enjoy the hell out of the progress!

As we figure out how to control her diet then her general health improves and especially her eczema. I don’t have to smother her in steroid creams. She can wear synthetic fibers in her clothing.

Food. Skin. Asthma. Temperament. My sanity. Food allergies. It’s all connected, but, not in a continuous cycle but more like a finely woven web that depends on each strand to stay strong.

Kid’s who were so allergic to peanuts that they couldn’t be in the same room as them have gone through oral immunotherapy successfully. As the studies continue there are huge improvements with food allergies from when my brother and I were growing up, til ten years ago when I watched my infant break out in hives and swelled up to now.

It makes me hopeful for the future for not only my daughter but all kids who deal with the pain, fear and difficulties both physically and emotionally from food allergies.

She may always have food allergies. She may one day have the freedom to live without fear. Either way we are going to make the most of it, enjoy each moment and be as silly as possible.

Related Posts:

Food Allergies and School Issues

Food Allergies and Girl Scout Cookies

When Your Child Tries to Push the Food Allergies and Limits

When people wish Harm on your child because of food allergies and because they are assholes

When Food Allergies Empower an Independent and Thoughtful Child

How to be cool about food allergies at Birthday Parties

And something really funny about PEANUT allergies <– this will make you laugh. Lots. Give it a read.

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Managing food allergies and holidays is tough but, I wasn’t going to allow food allergies to hold my kids back. This is how we make it work!

Tips On Having a Safe and Fun Halloween with Food Allergies

  • Always have your required medicine. My kids carry an “Emergency Bag” on them at all times. No exceptions. My daughter keeps her epipen, benadryl, inhaler, tissue, emergency cards, wipes and a small first aid kit in her bag. Yes, between the candy sacks, halloween costumes and other stuff your kid seems to haul around it may be tempting to leave medicine at home since you will be in the neighborhood. I always play safe.
  • Eat a big huge meal before you go Trick or Treating. It will be tempting to eat candy on the go on an empty stomach. Lessen the temptation.
  • If you are stressing how to manage your child’s food allergies at a Halloween party then check out this post I did about Birthday parties. Same rules apply. It’s also great for those of you that are hosting a party and have someone coming who has food allergies. I even quoted Pulp Fiction in this one.
  • Get your kids in the habit of always asking before they eat something.
  • Have your kids wear gloves with their costumes. My daughter is contact sensitive to milk… if she touches it she will break out. Some houses want the kids to pick out their candy. To minimize the amount of exposure I’ve always asked them to wear gloves. Just. In. Case. We had one instance where she picked up a candy bar and it was open. Milk chocolate was exposed… if it had touched her bare skin she would have broken out. I switched her gloves and wiped them down. Sure I look like the crazy germaphobe Mom but I’m keeping my kid safe.
  • Homemade treats should be politely declined. I think it’s sweet that some people bake fresh cookies and brownies and sometimes give them straight from a plate. The cop’s daughter in me says “Oh hell no, those could be poisoned” and the allergy Mom in me freaks out. This has happened a few times and I’ve taught my kids to just politely say they can’t have those but it was very sweet for them to offer.
  • Keep it fun. Yes, your child may be gathering dozens of pieces of candy that they can’t have. Let them. It’s about being outside, showing off their costumes and having fun. Have a system where they trade in that candy for something else. Last year I wrote about the Halloween Fairy which is a fun way for kids to trade in their candy. I encourage you to welcome the Halloween Fairy into your home even if your child doesn’t have food allergies… it’s a way to swap out those treats and replace them with a better alternative.

My daughter is ten now and we haven’t missed a trick or treating moment. We haven’t allowed her food allergies to hold us back. We haven’t had any negativity from it… just lots of fun and great memories.

Bonus points if you can guess our theme

If you have other tips or advice I would love to hear them. I hope you and your kiddos can go out there and make the most of it!

 

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Sometimes, no matter what you do for your child with life threatening food allergies, there will be mistakes at School.

Thankfully, nothing physically happened to put her in danger but it was going that direction. This was an emotional attack and broke my daughter’s fragile heart and put me in a lose lose situation.

I totally get that unless you live the life of a person with severe food allergies you don’t get how dangerous it can be physically or emotionally.

I try to advocate, educate, tell funny stories and make it all as positive as possible. Everything is in place at school with her IEP and 504 Plan that gives her legal protection. I keep open communication with the faculty and teachers.

For the most part I am really friendly, laid back and positive about everything. Follow the guidelines and nothing goes wrong and I don’t have to get all crazy.

Though, sometimes things slip through the cracks. Sometimes we have to deal with parents who push their own agendas or teachers not reading the freaking manual.

I personally can’t stand end of year parties and holiday times because it is a source of stress and frustration no matter what alternatives are provided. There is a reason many schools BAN classroom parties. Not just because of the food allergy issue but because it takes away from valuable classroom time and lots of parents don’t want other parents sending their children on a sugar high.

Even if I didn’t have the perspective that I have I wouldn’t want my kid having cupcakes, pizza, candy or junk food all the time. We don’t do that at home for health reasons so why should it be a constant staple at school?

Anyway, a pizza party was decided for my daughter’s classroom. My daughter is contact sensitive to milk. This fact sucks and has been a challenge to control. If she ingests milk or has too much exposure she can go suffer anaphylactic shock which can kill her. This fact, obviously, sucks even more. I thought everything was clear about pizza and ice cream being around her. I thought it was understood what was in her health plan. I can easily provide alternatives and we can do other foods or popsicles. But, no. It was decided and announced that pizza was it.

If you don’t have experience with health plans and IEPs then this may seem confusing. Basically, if a child has any special needs then accommodations need to be legally met so that child can be in a safe learning environment and not fall victim to discrimination.

Everything about this party legally went against what is laid out to prevent her from physical and emotional harm. Still, it was pushed forward. By the time it was told to the parents it was a little too late… the kids knew and were looking forward to it. This worried my daughter because the last thing she wants is for all the kids to be mad at her because of her health conditions. It was a lose lose situation and I watched her cry herself to sleep more than once because of something that could have been prevented.

I just didn’t get why we were dealing with this when we had no issues this year and everything laid out was so simple. Why choose the main food that can put her in harms way?

It started turning into a battle. Some asshair parents started gossiping which got back to my daughter. People can be so selfish, though, they think we are the selfish one.

Yes, blame the child who can’t help the cards she was dealt with. It was suggested I just kept her home. Really? We have dealt with so much negativity and people even wishing harm on her.

You start to reach the boiling point where you think you can’t win and hope in people not being asshairs is lost.

It is pizza. PIZZA! All the kids ultimately care about is they get to party. I wanted peace. I wanted my daughter to finish the school year in a positive note since we have had to face the fact she will be homeschooling soon.

The alternative? Our wonderful Principal, who really understands my daughter’s health issues because of personal connections with it, wanted to just make her happy. We were all worried about pulling the party at this point and kids being upset with her. There was also concern that catty parents would turn it into something bigger… because some people have nothing better to do. We didn’t want her missing school or being put in danger.

The alternative?

My daughter is having a special day with the Principal. They have games, popsicles, allergy friendly cookies, bubbles and all sorts of things planned. She is throwing my daughter a party with the office staff and making her feel special. This is insane to me because everyone is so busy with end of year craziness. The principal insisted that my daughter was more important in these moments and everything else can wait.

We weren’t sure how awesome this would be to a fourth grader but my daughter was elated going to school with her party supplies. She was so happy to be greeted by everyone in the office who were showing genuine excitement to have their own lunch party with her.

When my daughter hugged me goodbye she told me thank you for always helping her find a way. That moments like those make her feel like the luckiest girl to have a Mommy like me and to have days and events where she can feel special and forget about the things that make her different. We try to make the most of each day, no matter what.

I walked away with happy tears and can take comfort in the fact that we are ending this year on a good note.

Though, I do kind of feel bad for the Thor hammer like emails I had to send out advocating for her. However, time and time again I realize that we do have to live, laugh and ninja kick those obstacles and find those happy solutions.

And no one is going to take away my daughter’s choice or right to be safe.

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My Daughter's Girl Scout Cookie Monster Outfit Thanks to her Auntie

There were big obstacles in our way to getting my daughter involved in Girl Scouts. My daughter’s health hurdles and life threatening food allergies make it hard to be just another participant so it was best for her that I take a leadership role.

The reality is that expecting others to make the right and fair accommodations for your food allergic child is unrealistic. Sometimes you have to just get shit done yourself and that is how we roll…

In case you didn’t know… Being a Troop Leader is a crapton of work! However, it is very rewarding. Sure, there are a lot of headaches and stressful situations along the way but it balances out. I am able to ensure that there is no exclusion for my daughter within her own Troop and that all activities are safe for her. We, thankfully, have amazing families who totally get how unpredictable things become for us.

The other concern I had was product sales since it seemed cruel to ask her to sell something that could potentially kill her.

There was still the issue of fundraising by selling foods that can harm her. Not participating in sales means the Troop loses out on important funding for all the projects they want to tackle. It is also a wonderful introduction to business and what being an entrepreneur is like.

She always had the option to not participate in Fall Product Sales (Nuts and Magazines) and Cookie sales in the Spring. I explained the dialog to expect when selling and we discussed how it could make her feel. Most people will ask a Girl Scout what their favorite cookies are… but what if you can’t eat it? Is that question going to jab at her young heart?

She decided early on that she wanted to sell with her Troop because it would help. It was a huge hurdle for her and a very hard decision. She hasn’t been without painful moments and awkward times where she can’t relate to the people who love the cookies she sells. Those negatives are far outweighed by her determination and the happiness she gets from meeting her goals.

She works her butt off. She tries her hardest. She feels empowered and she finds her own ways of dealing with the obstacles in a positive way.

Last year her efforts paid off and she was able to get in to the 500 Club. She donated her incentives to the local Children’s Hospital since she saw the 500 Club Party and accomplishments as her reward. It was a fun day for her and I to spend with other Girl Scouts at a huge outdoor party.

She knows that by participating in Girl Scout Cookie sales that she is making a difference. She is driven not only by her goal setting but by the money raised funds our community service projects.

Her favorite thing to say to customers is “Thank you for helping me make a difference.”

I’m very proud of her and had expected some of this determination to lose it’s hype. It’s only intensified. This year her health is more challenging and she is more fatigued than usual with a lot of gastrointestinal issues but she is powering through it. She has her regular supporters that are happy to help her in her cause.

And while her determination creates a ton more work both as a Leader and a Mom I am happy to be right by her side and cheering her on.

Even if my living room looks like this during Cookie Season.

 

 

 

 

 

 

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Post image for Diet Changes for Food Allergies, Autoimmune Diseases and Why My Kid is Tough


This week we went to UCLA Medical to try to get some answers for my daughter’s recent autoimmune flare ups. We have some new directions… but no solid answers.

That’s the thing with chronic illnesses and autoimmune issues. Sometimes there are no answers.

We know what is going on with her body but we don’t know why.

And that is the part that sucks.

Without knowing why we can’t know how to fix it.

So, we shoot in the dark.

What we do know is that there is something causing extreme constipation and then extreme diarrhea. Her chronic urticaria (hives) are flaring up again. Her muscles, joints and bones ache. She is getting dizzy a lot, fatigued, doubled over in pain and sleeps a lot more than usual.

Not exactly what a nine year old girl is supposed to be experiencing. [click to continue…]

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