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Tips for Living with Invisible Disabilities: Food Allergies Edition

We often focus on the medical aspect of food allergies for children and adults, but seldom do we reflect upon the toll it takes on those who navigate life with food allergies and their caregivers. Food allergies fall under the umbrella of the Americans with Disabilities (ADA) and for good reason. When someone has a food allergy that means that they may be susceptible to severe and life threatening reactions because their body reacts differently to a food that is considered otherwise safe. Add in to that well-meaning individuals who don’t understand some of the complexities and others who are just thoughtless or unkind, and living with food allergies can be tough! Below I’ve included my top tips to thriving with food allergies:

  1. Try to find the positive. This one is tough, because I will admit that so much of our society centers around food. It is foundational for many social activities. Although food allergies can make life challenging, I do credit it for making me more aware of what is in food and in some ways this has contributed to healthful eating choices in ways that go beyond just avoiding my allergen (s). Also, it created a sort of compassion in me that can only come from walking in these shoes.
  2. Focus on what you can eat, at least just as much as what you can’t. While a big part of managing food allergies is maintaining an almost hyperawareness of what goes on your plate, at one point I started appreciating the things I could have and the things I am able to enjoy. This is a case of glass half full, but it does remind me that I am able to eat a lot more things than I can’t.
  3. Be confident in advocating for yourself. At this stage in my life, I have very little qualms about what others may think of me doing what I need to be safe and feel comfortable. But… that was not always the case. So, if me now had a talk with me back then, I would tell myself not to worry so much about what others think when I ask questions at restaurants or have to turn down a treat. Breathing is important! Much more important than what others think. Those who know and care about me understand and accept this as part of who I am (and what I need to do!)
  4. Make sure that you are getting what you need in your diet just as much as keeping out the things you can’t have. This has been a very steep learning curve for me. Depending on the allergy, it may be necessary to take out whole entire food groups (such as dairy). Other food allergies such as wheat or eggs may make it harder to get other nutrients or protein (the later). Add in multiple food allergies and it gets really complicated. Learn what things you can put in to your diet to replace the vitamins and minerals that usually are obtained from your allergen. I ended up consulting a nutritionist at the local regional hospital who gave me tips and recipes for helping me with protein, calcium, and iron. Check with your insurance to see what they cover and what the requirements for this are (sometimes a referral and diagnosis code is required).
  5. Look for online support, but take it with a grain of salt. Emotional support is super important and it can be helpful to keep in touch with others who are experiencing the same as you. There is such a spectrum of allergy related conditions, though, so it is important to make sure that suggestions shared are right for you or your child. Always clear advice with your allergist and discuss a emergency plan in case of reaction.
  6. Find other ways to connect with people outside of food! Take a hike together or if food must be part, have a picnic where everyone BYO. Get creative here and have fun looking for ways outside of food to socialize.

When we teach and parent we touch the future and that is a pretty amazing place to be!

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Food Allergies in the Classroom #2

Food is an obvious central social theme in our society and culture. The impact of this starts young for children as they are bombarded with the message early on that there is a food attached to almost every type of celebration. Eating is something that unites us, but for the food allergic child or individual such socialization is quite the opposite of unifying.

Know that there is more than one right approach to managing a food allergy. When my son was diagnosed with food allergies at age 3, we took the approach of helping him learn to navigate the feelings that come along with the social nature of food. In his case, we felt the best approach (for him) was to equip him to know how to keep himself safe in an age appropriate way and to learn to accept that the world may not always accommodate him. However, this is not necessarily the correct approach for every child with a food allergy. As with many things, there is a spectrum upon which food allergies may lie. So right off the bat, I want to get it out there that one right way to approach a food allergy does not exist. It depends upon the type of reactions, the trigger (airborne or ingested or both), and the maturity/ comfort level of the individual. Please don’t be that person that says,” But I know a person that has a food allergy and they can ( fill in the blank).”

For example, we cannot expect young children to necessarily make appropriate decisions for themselves at all times. We can definitely start equipping them to do so and scaffold for them. Statistically, it needs also to be said that increased incidences of food allergy related injury or death increases in the adolescent years. A combination of the child venturing out more independently, feeling invincible, and perhaps a general feeling that the child is capable of more responsibility gives us an idea of the contributing factors. It should also paint of picture of why we cannot let our guard down.

Do not underestimate the seriousness of a potential reaction. Just because someone you know “just” gets a sick tummy or “just” gets hives, know that reactions depend upon the person. Pop culture would have us believe that epi pen is a magic cure all, when in fact it just buys time to get to the hospital. Most often a second epi pen is needed within 15 minutes (therefore, they are prescribed in double packs. What? did you think it was a bulk buy?) Serious traumatic brain injuries can occur for even those who do survive a serious allergic reaction due to oxygen deprivation. Truly, it is a very serious matter that can change somebody’s life forever.

Be considerate with questions. While most are happy to oblige , I have to say that the two questions I hear most often get rather old. The first question is” Why do I think so many people/ kids have allergies these days?” Hmm… no one really knows for sure, least of all me… but if you come at me with “…but kids didn’t use to have allergies like this,” I will tell you that modern medicine is a blessing and we have only to see the amazing things that come from the young lives that are saved through the use of an epi pen and hospitalization. The reality is that many food allergic children most likely died in infancy back in the day (at least that is one theory). I don’t know about you, but I would much rather have a higher percentage of food allergic children reach adulthood, then have fewer kids with food allergies.

Next question I hear is “What do you think cause food allergies?” Jury is still out on this and just like the above question, a million different theories and no definitive answer . A lot of times, I feel people just want a little reassurance as to why it happened because they want assurance that it won’t happen to them or their loved ones. They want to know what could have been done differently or have theories as to what could have been done differently. This goes back to the decades long debate of choices parents make while raising a tiny human and everyone wants to find the “reason” that it happened. The reality is that genetics are most likely to blame for the most part. Yes, research has showed correlation to other factors, but that is not causation. Case in point, my regular birth child is the one that had food allergies, whereas my C-section child had absolutely none. Some studies point to the opposite often being the case, but again we are a mixture of our own genetic stew.

Join me tomorrow as I share a bit more about allergic living from a teacher’s and mom’s perspective.

When you teach, you touch the future and that is a pretty amazing place to be.

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Inclusivity for the Invisible Disability

When we think of disabilities, those that are visible on the outside are often what comes to mind. When the need is in plain view, why certain accommodations are needed is much easier to explain. But within the disability community, exists a subcategory of those who have what is known as an “invisible disability.” When the disability is not visible from the outside, the territory of making assumptions is all too often entered. For example:

  • A child with spectrum disorder or attention deficit disorder (or any other disability that affects the development of the child) displays behavior not in line with their chronological age and the Judgey Mcjudgersons of the world make sure the mom knows their disapproval, because clearly it must be the parent’s fault (it’s not).
  • A person with an invisible illness or disability that affect their mobility receives a back-handed comment from a passerby for parking in the handicap spot.

These are just two examples of the biases that are experienced by individuals with invisible disabilities and their loved ones.

Within the classroom, it is especially important to make space for children who present with developmental or medical differences due to an invisible disability. It is 100% the responsibility of the adult to make sure that the classroom is not only accessible, but is a safe place for children to learn in all ways. In some cases, depending on whether or not the disability directly affects the child’s ability to learn, they may be placed on a 504 or IEP. 504’s generally apply toward a medical disability such as a food allergy or even ADHD, if it does not affect the child’s ability to learn ( truly, there are some cases of ADHD where the issues are more behavioral and do not affect the student’s access to the curriculum, but I advise parent to really reflect on what is best for their particular child if they are diagnosed with ADHD). An Individual Education Plan (IEP) is a plan that addresses what accommodations and/ or modifications will be made for a child in order to allow them to access the learning. Both are legally binding; however, an IEP tends to be seen as more rigorous. All such diagnoses or conditions are covered by the American with Disabilities Act (ADA).

For more ideas on how to make sure your classroom is accessible for all students, contact me at deanna@deannawestedt.com. I would love to walk alongside you or your staff in ensuring that all children have access to that depth of knowledge equity I am so passionate about!

When you teach, you touch the future and that is a pretty amazing place to be!

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Allergies in the Classroom: Myths and Misinformation

I have been a member of the allergy community for about 17 years (actually this week is my allerversary, when I first developed a very serious reaction known as anaphylaxis to a food product that for most is completely harmless). Navigating the allergy world for myself and then later, also my child, is a challenging universe.

Here are some important fact that every teacher should absolutely know:

  1. Allergies exist to almost every thing known to man. We hear so much about peanuts and the “top 8” that many do not realize other allergies exist to almost anything that is edible. More over, and please read this sentence twice, any allergen can be a trigger of anaphylaxis ( a life-threatening reaction which causes the airways to swell, the blood-pressure to drop, and can lead to cardiac arrest). Wheat, dairy, soy, etc. can have a range of reactions depending upon each individual. And yes, dairy and wheat (or any other allergy) can trigger anaphylaxis. If a child in your class has a declared allergy, it is imperative that you make yourself aware of what their symptoms are and what to watch for. Make sure you understand what previous reactions have been and if they have a history of anaphylaxis. Just because it isn’t peanuts or tree nuts, don’t assume that the reaction will be “mild.”
  2. Know the child’s emergency plan. This is a plan that is put in to place by the child’s allergist. You should know when to EPI and what the recommendation is about giving antihistamine. Often times the answer is EPI NOW, ask questions later. But again, that is a conversation to have with the school nurse in regards to that child’s specific plan.
  3. Don’t assume anything. I never gave any food item to a food allergic child without first having the parent approve the ingredient list. I once found that a peanut product was used as a stabilizer in a giant tub of plain chocolate ice-cream. Also, trust me when I say that as food allergic individual, we become the experts of label readers. An allergen can be in a “hidden ingredient” that the average person would never suspect. Let the experts (ie. the parent) do the checking!
  4. Don’t send home treats with kids to be checked out by their parents. The child may decide to eat it en route and what’s worse not have help near by if needed.
  5. Better yet, don’t have food based treats in the classroom at all if possible. Please and Thank-you!
  6. Watch for allergy based bullying. There have been instances where children have becoming dangerously ill because they had their allergen thrown at them. (Yes, any contact with a mucous membrane may trigger a reaction). Additionally, mental and emotional harm is very hard to reverse. Children with food allergies already walk a very difficult line of feeling isolated and feeling safe. Make it your goal to make sure your classroom is a safe environment for that child and do not allow their physical, mental or emotional well-being to be threatened.
  7. Become educated. Food allergies are often associated in pop-culture as being “uncool” (okay, they are a bum deal, but it doesn’t make that person uncool). They have even been the butt of jokes on kid or comedy shows. Understand the emotions that come with allergies. While, individuals with food allergies may report higher feelings of anxiety, it is not the anxiety that triggers the food allergy but rather the food allergy that triggers the anxiety.

Remember, the food-allergic person is only one mistake away from a potentially life-threatening experience and many have already experienced that in their young lives. That is a lot of weight to bear. Let’s make our classrooms allergy friendly.