Raising an Allergic Kid, Cultivating Independence

Two Food Allergy Moms Discuss Creating a Strong Support System and Taking it Day by Day

As we all settle into month 257 of the COVID-19 pandemic, (but who’s counting?!) spending so much time with my kids (all of it top notch, quality time!) makes me think about how I can encourage independence, despite our temporarily limited mobility. 

Backstop is all about creating community outside of the home, so our kids can do things they love and create connections with others. We want them to do what they love, right? Even if it sometimes feels like our hearts are indeed running around outside of our bodies. 

Sometimes the best way to sort it all out is to connect with someone who is a little further down a shared path.

I talked with Lesley Solomon, a fellow allergy mom who navigated the nervous early years with her son, and came through the other side to fully embrace all the trappings of early adolescence. She serves up a vision of how a kid with allergies can come into their own if they keep meeting key age-appropriate milestones to achieve independence. It involves copious amounts of soccer, skiing, and her own love of yoga.

Liz Voyles, Backstop: So tell me about your sons.  

Lesley Solomon: I have two boys, 10 and 11. My 11-year-old is the one that has severe food allergies. He was diagnosed at about seven months and then had his first anaphylactic reaction when he was about sixteen months old. I think the second one was a month later, so we realized that this scary thing was real and that we needed to change our lifestyle. 

We made a lot of changes--we only hired babysitters and nannies that we really trusted; when we started to move into school ages, we would meet with the nurse every year and I would meet with teachers at the beginning of every year. The best thing that happened when my oldest son started fourth grade is that when we went in early to meet the teacher and he actually said to her, “Do you know about my food allergies?” 

He told someone about his food allergies for the first time, so that I didn’t have to do it. It was a pretty cool thing to see. He’s become a much better advocate for himself. His little brother--the two of them love each other more than anything else in the world--has become a pretty big advocate as well. When my older son is afraid to speak up for himself, his brother will do it for him. It’s been pretty awesome watching them get each others’ backs. That has been our experience. 

Liz Voyles, Backstop: That’s fantastic. There are these milestones of independence that every child has, right? Riding a bike, getting on a bus by themselves for the first time--but when you have a child with a severe allergy there’s an additional layer of milestones where they start to navigate their condition for themselves, and that is really, really cool. 

Lesley Solomon: Exactly. My son right now actually just biked over to school to meet one of his friends and he always has this little bag that has his Epi-Pen, his inhaler--because he has asthma too--and his phone. He’s become quite independent now. He bikes to meet friends and always has his medicine; even when we’re all leaving the house as a family he’ll say to me, “Mom, do you have my medicine?” It has been pretty amazing to see his responsibilities grow and it makes me feel better. I’m still scared about what happens one day when he goes to college, but I’m not ready to think about that just yet. We need to get through each of these years one by one first. 

Liz Voyles, Backstop: I’m with you. Sometimes thinking about the future can be a little bit overwhelming. When my daughter was a toddler or a baby I don’t think I really could have imagined how self-sufficiently she would be operating now. So you’re right, it’s a good lesson to just take every year as it comes, one at a time. 

Lesley Solomon: Sure. I think that having a kid who is eleven and starting to advocate for himself is a lot different than having a three- or five- or seven-year-old. It was really hard in those years. People told me that it got easier but I didn’t totally believe them until I got to live it. I think if this was a regular year I would put together a package with his Epi-Pens and his inhaler and I’d send it to his school nurse, then I’d call her and ask if she got it, and she’d say yes, and then we’d continue our relationship, a trusting relationship. 

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Liz Voyles, Backstop: You do have to have all these systems built-in and you just kind of refine them as you go; you get better and better at getting the people in your circle to manage all of this with you.

Lesley Solomon: Sure. Every fall he plays soccer, so every fall we’ve had a new soccer coach. Every year I have to let the coach know about his allergies and his asthma. The thing that’s pretty scary and amazing is that the coaches all know already. They say that they get it, that it’s not new to them, that they can handle it. Whereas I would say that when he was a lot younger I didn’t get that response and people kind of gave me a hard time about it. But now the coaches get it, the babysitters get it, and the babysitters even have food allergies because they’re part of the generation of kids that first started getting food allergies, which has actually been amazing. 

Liz Voyles, Backstop: The world has done a lot of waking up about severe allergies, just in the last five or ten years, huh? Tell me a little bit about your son’s favorite activities that are apart from Mom and Dad. 

Lesley Solomon: He is an “all soccer all the time” kid. He also does soccer in the spring and fall and skis in the winter as well. 

Last year, to all the moms with three- and five-year-old kids out there--I can’t even believe I did this--I let him go once a week every Friday night to a mountain in western Massachusetts where he would ski with a bunch of kids ages ten through high school. They would take a bus and they would go skiing. I never thought I would let him do that.

Liz Voyles, Backstop: Well, your skiing story, which might sound somewhat simple to you right now, is going to be really inspiring to some of the parents with toddlers and young kids who are wondering what elementary and middle school are going to look like for their kids. 

Lesley Solomon: And I never thought in a million years that he would be able to do something like that, but I knew that him doing it would be good for him, good for me, and good for our family. 

Liz Voyles, Backstop: It’s such a key time for them to learn their independence and you don’t want to be a barrier to that. 

Lesley Solomon: I never wanted his allergies to get in the way.

Liz Voyles, Backstop: Of course. Okay, what are some of the things that you love to do that require finding a caregiver? What do you like to do that Backstop could potentially free you up to do more often? 

Lesley Solomon: That’s a good question. I’d like to eventually be able to go back out to restaurants with my husband or with friends again, when it’s safe. Backstop would free us up to do that. I do go to yoga on the weekends. Backstop would give me peace of mind, especially back when he was younger, that I could do what I wanted to do--be it yoga, biking, being out with friends--while knowing that the person who was watching my son had everything that they needed to make decisions the way that I would. That’s how I think about Backstop. I want everyone to have the same information and not to have to come up with something on their own. 

The things you learn with each reaction about how you should be doing things--Backstop can lay those out for you and share them with the people that will be caring for your kids. That is what’s really important. 

Liz Voyles, Backstop: To not feel that you have to reinvent the wheel with each new relationship, right? I think there will be a lot of parents that will really understand what you’re saying and be able to nod their heads when we post about these anecdotes. 

Lesley Solomon: Sure. It’s hard to believe what people say about how it will be when the kids are older, but if there’s some advice to parents of younger children, I’d say that you’ve just got to get through this time. And once you’re through it, it’s going to get easier. Still stressful, still scary sometimes, but you’re not alone anymore. You’ve got other people there to support you, including your kid. 

Liz Voyles, Backstop: I love that.

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Lesley Solomon, MBA, became Dana-Farber's Senior Vice President and Chief Innovation Officer in 2017. She has served as the founding Executive Director of Brigham and Women's Hospital's Innovation Hub, and as Director of Strategy and Innovation at the Brigham Research Institute.

She is a co-founder of the Food Allergy Science Initiative at The Broad Institute of Harvard and MIT, which brings together experts across disciplines to unlock the biology of food allergy and change the field to develop new treatments, and is a mother of a son with food allergies.


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