Friday, September 29, 2017

Special Needs Spotlight || Beckett

Hi guys! If you love This Little Miggy and the work I do here, including the Special Needs Spotlight series, it would mean a lot to me if you would take a minute and like my FB page and Follow me on Instagram. And of course sharing these posts is always appreciated and one of the best ways you can support me. Thank you! XO Miggy

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Hello! my name is Cortney and I'm married to my college sweetheart, Matt. we live in the pacific northwest, where Matt designs video games and I stay at home with our three babes, Beckett (6), Heath (3), and Isla (almost 1). When Beckett was 2 we discovered that he has a life threatening peanut allergy, and that’s what I'm here to write about. Thanks for having me! 

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Miggy: Hi Cortney and welcome! I'm so excited to be talking to you today about your son Beckett's severe peanut allergy as I believe this is a topic we can all be better educated about. First, an you take me back to the day you knew you learned that Beckett was allergic to peanuts? How did you feel when you first learned about this and can you compare those first thoughts and feelings with how you feel now?

Cortney: Shortly after Beckett’s second birthday, we gave him some crackers with peanut butter, his first direct peanut exposure. About half an hour later, he was sitting on the floor working on a puzzle and projectile vomited, which we thought was weird. I was sitting with him on my lap and noticed that his breathing sounded shallow and that he was struggling to take a deep breath. We jumped in the car and raced to the hospital and were rushed back to an emergency room. He was immediately given an epinephrine injection in his thigh, was put on a nebulizer, and had an IV put in. The doctor told the nurse to prep for an emergency tracheotomy (which he didn’t end up needing, thank goodness). I was obviously passed out on the floor of the room from fear and anxiety. Ha. Not really, but I was overwhelmed with fear for Beckett in that moment and it took some time before I could get that fear in check. Now we are as informed as we can be about food allergies and take every precaution we can to keep Beckett safe, and my anxiety over it is mostly minimal. Mostly.


Miggy: Will you please educate us about your Beckett's diagnosis and explain how his needs affect your day-to-day life?

Cortney: Beckett has many environmental allergies (grasses, trees, hay, cats, etc.), food allergies, and allergy related asthma and eczema. As far as we know, his only life threatening allergy is to peanuts, where his immune system mistakenly responds to peanut proteins as something harmful and reacts, in his case, by causing him to go into anaphylactic shock. The thing that has been the most frustrating with Beckett’s allergies is discovering what a mystery allergens are to the medical community. Peanut allergies are on the rise, but the reason for that is unknown because doctors don’t really know what causes allergies in the first place. There is no fool proof allergy test, Beckett has had skin and blood testing done, and his peanut reaction was literally off the charts, but allergy tests sometimes have false positives and false negatives AND are not accurate at determining severity. As far as our daily life, we are incredibly fortunate to have good insurance through Matt’s job and are able to keep multiple epi-pens on hand. We keep our house completely peanut free (including products that say they may contain peanuts) and Beckett never goes anywhere without two epi-pens. I bring more than that if we are road tripping or camping and I know it would take extra time to get to a hospital. We don’t eat out too often, but restaurants are generally pretty good about using fresh pans and utensils and it is becoming more and more common to see menus requesting that you inform your server about food allergies, which is great. We also have to be very careful about not visiting places that fry with peanut oil… no Chick-Fil-A for us!

Miggy: What are the biggest worries you face for Beckett? On the flip side, what are your hopes and dreams for him?

Cortney: Right now my biggest worry is that Beckett will have an allergic reaction when I'm not there. sending him to school all day is scary and I feel anxious knowing the responsibility to check what he eats is mostly on him. We don’t know if Beckett will ever outgrow his peanut allergy (the best guess is that it’s very unlikely) or if any of his more moderate allergies will suddenly become severe. Beckett’s condition shouldn’t prohibit him from doing whatever he wants in the future, but it would certainly be ideal if his allergy became less extreme or went away completely. Right now the worry about him accidentally eating something with peanuts rests mostly on his dad and me, but eventually it will be on him and he’ll always have to keep it in mind and that’s kind of a bummer. You don’t realize until you are dealing with a severe food allergy what a foodie culture we live in!

Miggy: Now for a lighter question, I'm a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Cortney: When Beckett was 3, we took him trick or treating for Halloween with a group of friends. We didn’t want him to miss out on the activity, but we obviously had to be very careful with our candy choices because so many (really delicious!) candies have peanuts or peanut butter inside. Beckett has a serious sweet tooth, so we really had to get it in his brain early on that he needed to check with us to see if a candy or treat was safe for him before accepting it. So every time we went to a door and somebody would hold out a bowl of candy, Beckett would give it a super shady look and while waving his arm over the bowl, ask me, “What is even safe to eat in here?” We got a lot of offended looks and comments about how all their candy was definitely safe to eat.

Miggy: I know that having an invisible condition presents its own challenges, but especially a condition that is invisible and potentially fatal. How can people best approach or respond to Beckett? What do you want other people to understand about the seriousness of having a severe allergy? 

Cortney: Obviously you can’t tell by looking at Beckett that he has allergies, so we don’t have to deal with people approaching us about it. What we do deal with is people who don’t understand how severe an allergy can be. When Beckett was in preschool, I heard a mom complaining to another mom about how annoying it was that they couldn’t bring in homemade baked goods for their child’s birthday. “It’s just ridiculous how paranoid people are about it these days. it’s totally out of hand. Who in class has an allergy anyways… like really? It’s going to kill them? I doubt it,” she said. Um. Yes. If you feed my child a product that contains peanuts, he could die. Do you want that on your conscience? Is it worth the risk? Are you willing to gamble my child’s life so your kid can have cupcakes in class instead of an allergy approved treat? Of course not. I know if I had approached that mom and had her meet Beckett and explained our situation, she would have been mortified. (I didn’t say a word to her, which I know, I know, I know… was the wrong decision on my part, educational moment missed!) I have several friends that have admitted that they found “nut free zones” obnoxious and now that they know Beckett, they get it.

Miggy: What is the biggest lesson you’ve learned since becoming Beckett's mom?

Cortney: I think the biggest lesson I’ve learned is to be more in tune and considerate of other people’s needs, whatever they are. Especially children because they can’t always or don’t always advocate for themselves. I don’t expect anybody to accommodate for Beckett, but I am always so grateful when somebody does. Little things can make a big difference in making somebody feel comfortable or wanted. If we have friends over for dinner and I know they have a child who is a picky eater, I make sure to serve at least one food I know that child will enjoy. I use “I” lightly here, as I do approximately zero percent of the cooking in my home. I don’t know if this is really a special needs specific thing or just more of a trying to be a decent human thing, but it’s something I am trying to improve at. AND! I never turn away and roll my eyes anymore when somebody tells me they have a food allergy. Ha!
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Thank you Cortney for sharing your story with us as I believe this understanding and sensitivity to allergies, especially where we might encounter them in our schools, is so very important. I will admit I too was one of those people who used to roll my eyes at the sudden increase of nut-free zones, and I wondered, "are we going a little overboard here?" Now, I know the answer is an emphatic NO. I know allergies aren't thought of as a traditional special needs situation, but they can be fatal and they are usually completely invisible. What could be more deserving of education and attention? I love that you said one of the biggest lessons you've learned is to be more in tune and considerate of other people's needs. I too have found that to be the case for us as well. I can be hard to ask for other people to make accomodations for your child, but at the same time that willingness on the part of others can make all the difference in the world for a child. 

What about you readers--what are your thoughts about nut-free zones? Have you encountered this in your schools? Do you think it's overkill or do you whole-heartedly support it? Has this spotlight changed your mind? 

Thanks as always for your support readers! If you or anyone you know would like to participate in the special needs spotlight series please email me at thislittlemiggy.com. 

Have a great weekend!
XO Miggy

1 comment:

  1. Thanks for sharing! This sounds so scary. I wonder how the parents feel about schools or classrooms declaring their spaces "nut-free" when there aren't any children there with severe nut allergies. I have a friend with celiac disease (who has severe reactions to gluten) who said that the whole "gluten-free" movement (if you want to call it that) has actually backfired for those who have a legitimate disease because people don't take her need (and others who have celiac disease) as seriously because there are so many people saying they can't have gluten who really don't have any serious reaction if they do. In other words, her condition requires much more vigilance in preventing cross contamination than the average "GF" person. And the proliferation of GF has kind of watered down the seriousness of it - so now ppl just kind of roll their eyes when a person inquires if something is GF. I dont know how commom severe nut allergies are but I can't imagine that is as wide spread as the ubiquitous nut-free schools are. Which can actually backfire for those who really DO have this type of allergy. Is this making any sense? I'm having a hard time putting it into words.

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