When my son was diagnosed with food allergies, I tried my best to put aside fear and learn as much as I could about food, ingredients and how to keep my son safe. When each of my four children struggled with various developmental delays, and we had to go through the exhausting and painful process of getting our kids tested, go through hours of therapy, and write educational plans so their needs were met, I put aside my fear again and learned as much as I could. I suppose we never had “typical children”, but they are still extraordinary in their own unique ways. Every child is wonderful and special with endless potential.
I have tried my best to not be too “preachy” or “pushy” with my advocacy in children with food allergies and special needs, but I do think it is important to help educate others with what I know, how little that may be. In fact, I would never claim to know everything there is to know about these issues, and love learning with each of you every day. I learn so much from the countless other amazing moms and dads I have met over the years, and continue to learn from everyone I talk to or meet (virtually or in person). The one thing I do know for sure is that our work is never done; we must continue to educate and bring awareness to living in a world of food allergies.
I know so many of you have felt isolation, pain and fear over the thought that what our children could put in their mouths could kill them. We worry about whether or not they will ever feel normal, whether they will be ridiculed, whether they’ll be able to travel freely to see the world, or simply just out to a major league baseball game. But at the same time, we put these fears aside, day in and day out so we can send our food allergic children into the real world, and enjoy all the same things we do. We pack lunches, send them to school, birthday parties, camps, play dates, field trips and say ” have fun!”. Yet inside we’re always on guard for that one phone call that could change everything. THIS is our world, and I wouldn’t wish it on anyone.
Recently, in trying to help my school recognize the many benefits of adopting a Food Free Birthday Treat Policy, I have personally felt and heard the backlash. Yes, the second grade teachers in my son’s school are adopting a treat free birthday policy voluntarily, and I truly thank them for taking the initiative. Other grade levels still have the choice to allow treats in their classrooms. We are making progress, but it is slow. Why is it slow? I suppose it comes down to change. Change is a difficult thing for most people, and I can truly empathize with that. But I have also asked those same people to try to be empathetic to the idea of what it’s like to live in fear of food, empathetic to the sadness of seeing your child excluded from normal childhood events, and empathetic that every day is groundhog day for us in that we are constantly trying to keep our kid’s world safe. We work very hard every day to create a safe, happy and all inclusive environment for our kids. Wouldn’t every parent want the same for their child?
A friend of mine posted the question on her facebook page asking “would you not consider some one’s allergy if you invited them to dinner?” 19 comments later, I read an interesting one about birthday treats in the classroom. The poster said (paraphrasing here) that the last thing she would want for her food allergic child is to have other kids in her child’s classroom know they COULD have treats, but couldn’t because of THAT kid with an allergy. The person also said other kids would whine that “who would want to be in that class with so and so….”. There’s honesty for ya.
I also had a recent conversation with our school nurse who commented that she read my blog, and didn’t seem pleased with my “Reaction waiting to happen” post from a while back. We discussed it, and I reiterated to her that my number one priority is the health and safety of my child. Somehow we have to put aside our personal differences on this and talk about what’s best for these children. As parents and educators, we have to start looking at how we can learn from all this? How can we make changes that benefit everyone, not just the kids with food allergies? However, at the end of the day when it comes to birthday treats in the classroom, the cupcake still wins.
Some days I am happy to talk about our children’s experiences if it means it might educate others. Other days, not so much. People’s lack of compassion and understanding (like the face book comment) makes me sad. But the work goes on, and it’s important we do whatever we can to educate others, even if that means just our own children. Teaching empathy and putting others first is one of the most important things we can do for our children, whether they have food allergies or not.
Oh, Kelly. My heart is heavy reading your post today. I know this world, as do so many of us, only too well. To add the unique component to the equation of choosing to share your experiences (frustrations and all) in this public forum called blogging is both a blessing and a curse. Do you sensor your true feelings knowing that anyone can (and will!) read your post, or do you remain true to the genre and to your readers who read your posts simply BECAUSE they know you’re sharing and baring all in the name of building understanding and community? It’s a struggle, my friend, and I understand it only too well.
Know that you are an amazing writer, a genuine blogger, a true advocate and, most importantly, a wonderful mother! Your kids are blessed to have you, and we are all grateful for the work you do every day.
Take heart!
It’s said that people will pick a cupcake over a person, but it happens. My heart goes out to all of us dealing with this issue. At my sons school, we are trying to get the school to try a no food birthday policy, but not for the allergic child, but for all the kids health. We all know that childhood obesity is a problem and we are hoping this will also help the kids with allergies and diabetes too.
Keep the faith! Things will change it just takes time!
In your previous post I mentioned a message board that I belong to polled the members asking if a public school should go nut free and the over whelming response was absolutely not. Here is just a sample of the reasons why allergies policies aren’t a good idea according to these women.
*they will create a false sense of security for the allergic child
*too much responsibility for the teachers
*if the ban is too wide spread parents will just ignore the policy feeling like it not really important
*why should the entire student body be effected for just a handful of children
*the allergic child should just learn that they aren’t allowed to eat other food and why would that rule be any different than any other rule they have to follow
I have completely overestimated people. I am shocked that parents would just disregard a policy/rule put in place to keep a child safe. I know people that don’t deal with food allergies don’t understand them like we do but you would think they would have some basic compassion for a child.
If I asked these same women about giving up treats on their kid’s birthday at school I can’t even imagine the outrage.
I am worried about being strong enough to take on these battles for my son when he goes to public school. I am not exactly an outspoken person and I am going to need a thicker skin for sure.
What I don’t understand is why people don’t take food allergies seriously? Why not… BECAUSE THEY DON’T HAVE THEM OR KNOW ANYBODY THAT DOES. Then they think it is not a big deal.
Ok to the facebook comment… how do you think it feels to the child who has the allergies? As you know Kelly, my son was just diagnosed with Milk allergy. He loved breaded chicken that I made without eggs (as I told you before, he was diagnosed with egg allergy a year ago) It was very hard to watch him cry because he wanted his normal chicken this weekend. So bad that we had to leave the place we were eating at. I could not watch him go through that. He is only 2 1/2 and does not understand now why he is having to eat grilled chicken when what he wants is breaded chicken that I make. (of course, we had breaded safe chicken that I made for dinner)
I just don’t understand why everyone says the ones without allergies will get their feelings hurt when they never think to say well the one without allergies is really going to be left out.
being the blogger with the question, feel free to click on my name and read the blog post (titled, exclusion, august 28, 2009). It’s an interesting thread.
Kelly, I wondered about the nurse thing. Emotions tie into all things food related, that’s why anyone would ever not want the ‘allergy’ kid in their class to begin with. I wish I could post the entire facebook thread in that exclusion post because it said so much too. What a shame that we live in a world where it’s not ok to exclude, unless we’re talking about food.
if you get a chance, link your post to mine to make it easier for your readers. I think they’d all be interested.
I forget sometimes how “the rest of the world” can be when we are living in our bubble. We have a fantastic preschool where we have made friendships with parents and have managed to keep our little guy safe while trying to keep him included as much as possible. Although he had a class of 20 this year and I can tell you that I was pretty sick of making cupcakes for 20 birthday parties at school. (I did freeze a bunch but still). For a number of reasons it would be in kiddos best interests to have no food policies at schools. Why is it okay to make the “allergy kid” feel different all the time?
And I know what you mean about being able to be an advocate on some days and other days just not being up to it.
Well-written post. With a 15 mo old son who has just been diagnosed with a potentially life threatning allergy (peanut) as well as moderate allergies to dairy, gluten, tomato, and egg, (and we’re still waiting on some of the results) I can only say, “they don’t understand.” I didn’t. I had never been around anyone with more then a moderate food allergy and that rarely. I had no idea how dangerous allergies can be and when the nurse told me that my son could go into anaphylactic shock just because my older son ate a pb&j and then touched our baby without washing his hands, I was amazed. I’m learning, learning, learning. So while it is probably true that some people “know” and don’t care or don’t want to be bothered, I suspect that many of them don’t understand truly. It is hard for even me to realize how super-sensitive an allergy is … sniffing out even the merest hints of milk protein until my son squirms and cries and cries and I go sniff out the hidden culprit. Maybe they are uncaring. But maybe we just need oceans and oceans of more education. I hope so!
Oh Kelly, I hear you! All I can say is you are doing a fantastic job not only with these great recipes you post but also with the advocating and educating that you do – especially in school. I agree with the previous posters – I just think that most people don’t “get” it or the seriousness/potential seriousness of food allergies. I also think that when you don’t live with it day to day, these ingredients and foods we all avoid so diligently are just a part of everyday life. Even my own family, who I know loves my son fiercely, just doesn’t think through it like I do every day – which contributes to the pressure on us the parents to always be “on” in order to protect our little (or big!) ones which sometimes is just plain exhausting.
Hang in there, keep doing what you’re doing – maybe someday there will be a cure, or we’ll be lucky enough to outgrow a few allergies – and if not, then you will have raised a child that is strong and confident enough to look out for his own safety and to speak up in order to help others better understand – all because he saw his mom do that for so many years.
My daughter has severe food allergies since she was 6 months old. She just started 3rd grade and the kids have been taught tollerance with her. we had a birthday 2 days after school started and had not sent her birthday treats to school yet( I am able to send cupcake or whatever she want and keep them in the Freezer.). and everyone in class was like did she get a treat. The classmates make sure she is safe and sometimes want what she is having instead. it is no big deal for them and her if things are different cause folks we are all different. She will not grow out of these allergies and so with that she needs to speak up for herself when she wants and needs too. I found myself making a bigger deal out of things than she wanted me too and have learned that somethings she doesn’t care and some things she does. I just need to make sure I ask often.
maybe I am lucky and there are things we are working on at school. I love your blog and receipes they are most helpful. and yes we need to make more people aware of our concerns but the child is the most important and they know what they feel and want even at a young age.
I just had to add one more thing…
Did I ever tell you about the comment on a thread several months that absolutely sent me into orbit over shock, outrage and disgust? It was a comment on a local news story about food allergies and schools… this genius stated his opinion that the increase in food allergies in kids is a direct result of Darwinism. That these kids are somehow “inferior breeds” that need to be “weeded out” so they are born with life threatening allergies.
I can still feel my blood pressure rising as I type this. There’s no excuse for that level of ignorance. That’s not a lack of empathy that’s psychopathy. So….hey, it could be worse.
No Lissa! Wow…that is truly unbelievable! It’s almost as bad as Joel Stein’s OP ED piece a few months back..remember that one? Also, Lissa, your earlier comment really touched my heart, and it made me feel so much better. I can’t thank you enough.
Thanks so much Karin for your comment!
Oh, Carla, thanks so much! You’re always so kind and I really appreciate your comment. I don’t always feel like I am doing a fantastic job..but hearing those comments helps so much!!
I am a Registered Dietitian and mom to our year old daughter with egg and dairy allergies (also avoiding soy). I have been reading this blog since shortly after she was diagnosed almost 5 months ago and this is my first comment. Being a Registered Dietitian, I can honestly tell you that people truly don’t understand food allergies. They often think they are just intolerances, similar to lactose intolerance. Even with all of my professional education and clinical training, I previously overestimated my own knowledge regarding food allergies and have learned a great deal after my daughter was diagnosed and am passionate about further educating my other fellow dietitians. I feel more compassionate during patient education regarding food allergies as I now know how much more time and effort it takes to shop and prepare foods. You have saved me so much time by providing your recipes and posts, thank you!
Wow, thanks so much for your insight Cindy. I completely agree with you in that most people truly think an allergy is an intolerance. I am so grateful to you for educating your fellow dieticians…what a difference all of us can make! Thanks so much again!!
Joel Stein. There goes my blood pressure again!
I meant every word, m’dear! And BIG virtual hugs to you today after getting the scary phone call.
Dear Kelly – first thank you for your work, your book and your website. You are telling an important story and educating so many!
This story touched my heart – at times I wondered how you got into my thoughts. You put so many of my thoughts and experiences beautifully into words.
As I prepare to meet with my son’s teacher, your story will help me better articulate the important points I need to.
I appalud your second grade classes doing non-food birthday celebrations!!! I’m working on this from our end. I truly believe the movement on healthier and safer classrooms will come from the childhood obesity epidemic…right now the food allergic movement doesn’t have the power (and for some reason it’s okay to say mean things about the “peanut” kid but heaven forbid you say something about the overweight kid).
THANK YOU SO MUCH FOR ALL YOU DO!
I have two children, both with food allergies, and it can be tough sometimes to really get the message across. These days I find very few people actually do their own baking so it means when we have holiday parties etc. at school I usually volunteer to bring the cookies etc. None of the other children realize they are eating “special” food and gobble them right up. Everyone has a great time.
Thanks SO MUCH Lissa and Liz…your comments truly touched me and I am so appreciative! Liz…good luck with your meeting and let me know how it goes!
I feel ya – it cn be really upsetting how insensitive (and dangerous!) people can be.
Wow, Kelly.
That was a really powerful post. I felt every bit of emotion you put into it, and I could not agree more. As a mother of a child with multiple food allergies, I am really grateful to you and other mothers who are trying to make a difference. We are all in this together, and hopefully some day we can get the message out to everyone… we didn’t choose this life for our children, and it’s not something you can just ignore, because it is very real..I am glad you mentioned about having a mother put themselves in the allergic child’s shoes, as simple as it sounds, I have never explained it that way…
Keep up the fantastic work, and know that you will always have me as a supporter!
Thank you so much for your blog!
Rebecca, thanks so much for those incredibly kind words of encouragement. They truly mean so much. I love how you said “we didn’t choose this life for our children”…something my sister always says to me when we talk about certain challenges our children have. Nonetheless, this is our life and we do our best to move forward with acceptance and a positive attitude. There are so many amazing mama’s out there like all of you who continue to inspire me every single day. Thank you.
Mariah thanks so much for your comment…I agree….it is upsetting. Thanks again!
I just happened on to a paragraph mentioning your blog in Parents magazine. I couldn’t get here fast enough – that is how desperate I am for egg and nut free recipes. And then I read this post. I could bawl. You put my feelings of the last 5 years into words better than I could have. We live in a small rural town in Montana and my kids go to a small Christian school. Needless to say there isn’t much said about food allergies around here and much of the time I feel as if I am a major inconvenience to everyone when all I am doing is protecting my kids from something very serious happening. I can’t believe all of the links you have on your site as well – I feel as if I’ve hit the jackpot!! Thank you so much for the words and the recipes!!
I know it’s a little late, but I wanted to weigh in on the Facebook comment Kelly brought up regarding food in the classroom: “The poster said (paraphrasing here) that the last thing she would want for her food allergic child is to have other kids in her child’s classroom know they COULD have treats, but couldn’t because of THAT kid with an allergy. The person also said other kids would whine that “who would want to be in that class with so and so….””
I was the food allergic kid in the classroom (I’m still allergic, in college now) and from what I remember, what the Facebook commenter said is exactly how I felt. Whatever food envy I experienced, I did not want the other kids to have to change their eating habits because of me. For birthdays at school, my mother sent me with my own (delicious) treat and that was all I needed.
I want to describe a recent interaction with some friends to further my point. We had gotten Chipotle (a surprisingly allergy-friendly place) for dinner and were thinking about getting some coffee at Starbucks. As we drove there, a friend saw an ice-cream place that she’d been wanting to try. Immediately everyone in the car was on board. Then another friend said to me, “Wait, maybe we shouldn’t–you don’t want to sit and watch us eat, do you?” Of course I didn’t want to sit and watch them eat. But I especially didn’t want to deprive them of ice cream because of me. Yes, I know–nobody should choose food over their friends, and if I’d said I wanted to just get coffee I’m sure nobody would have voiced a complaint. But I–and other food allergic children, I suspect–don’t want the world to revolve around my allergy. I want to feel as normal as possible.
So by all means, instigate a food-free birthday policy. But emphasize the other health benefits–lowering obesity, for example–over the allergy issue. If my school had a no treats policy, and I knew it was because of me, I would have felt guilty at every birthday party.