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Faces of CFK: Eileen

09 Oct 2018 1:12 PM | Anonymous member (Administrator)

Eileen has four children and resides in Olmsted Township.
What do you do to relax?
What benefits has Connecting for Kids brought to you and your family?
The ability to connect with other families to get questions answered.
What has been your favorite Connecting for Kids resource?
Parent Mentoring
My greatest lesson learned...
Is that one can underestimate just how strong children are. My biggest fear for my children was social isolation. That they would be set apart from others kids, teased, or saddened about being 'different.' In contrast, my kids have generally taken their food allergies in stride. They care more about social opportunities, than what they can or cannot eat. If given the choice between going out with the theater cast/team and eating something different or avoiding the event, they choose the social event. They could care less about the Halloween candy, the fun is in the costumes and Trick or Treating. I am proud of the way they take responsibility for their EpiPens, and the way they self-advocate.
If I could go back in time and talk to myself the day we got the diagnosis I would say...
That my children would lead very normal lives, filled with friends and activities. My sons were diagnosed with severe allergies to dairy, eggs, tree nuts, peanuts, shellfish, coconut, and soy protein two weeks before Easter, in 2010. While I was already parenting a 5-year-old daughter with severe peanut and tree nut allergies, the dairy, egg, and soy diagnoses were devastating. How could I give these boys a happy Easter, much less a happy life? Food is a cornerstone of every holiday and celebration...chocolate Easter baskets, Christmas cookies, Thanksgiving feasts, celebration dinners, wedding buffets...all forbidden now. Not to mention pizza with the team, or ice cream with the theater cast. What about vacationing? How do I manage visits to out-of-state relatives? My sons were only 3 and 1 years old. How would I get them through school? I was scared, furious, and overwhelmed. To further complicate matters, my youngest son was managing severe oral and verbal apraxia (making chewing difficult), dysphagia (a swallowing disorder), and growth hormone deficiency (causing poor growth and lack of appetite). How would I feed him? I vowed that I would not let my children's food allergies limit them. I would make their lives as normal as I could. I researched, called manufacturers, and found substitutes. A lifelong baker, I took cake decorating classes to improve my skills. My children are 12, 10, and 8 now (I also have a 14 year old without food allergies). The coconut and soy protein allergies are outgrown. One son passed baked egg and baked dairy challenges and has outgrown some tree nut allergies. The other son remains anaphylactic to airborne dairy proteins and is contact reactive to many allergens. My daughter remains severely allergic to all nuts. All the children suffer from asthma, placing them at higher risk for anaphylaxis. Yet, we do not notice the allergies inside our own home, and we have learned to accommodate the allergies elsewhere. This Christmas, the kids enjoyed 17 varieties of homemade Christmas cookies, all dairy, egg, and nut-free. They have multi-tier buttercream and fondant homemade birthday cakes. We have a number of safe restaurants. We have vacationed at Disneyland, Gatlinburg, Hocking Hills, Chicago, and New York City. All are thriving at school, with strong 504s and one IEP. The kids are active in community musical theater, competition dance teams, karate, basketball, school clubs, and scouting. They go to parties and sleepovers. Many of these take planning, but we have found a supportive community, wonderful teachers, and understanding coaches and directors. At diagnosis in 2010, I never thought such full lives would be possible for them. I am grateful for all the help and assistance I have received, and I am eager to share what I have learned and to help others new to a food allergy diagnosis.
The best thing about parenting a child who struggles is...
Watching them rise above challenges. No one ever wants their children to suffer, and membership in the "food allergy club” is not one I would wish on anyone. But I have been amazed at how empathic, responsible, and knowledgeable my children have become. I am proud to watch them self-advocate. I was amazed at how my young toddlers learned so quickly to ask if something was "safe for them." I am awed by their courage in food challenges, when they are asked to eat the very food they have avoided. Personally, the best thing about parenting a child who struggles is when I can reach out to other parents and direct them toward a solution. Every safe product I discover, every baking work-around, every new safe restaurant, becomes a little victory in this war against food allergies, and I love being able to share what I have learned to help others.
Do you have any recommended resources such as blogs, websites, or books that we can share?
No Nuts Moms Facebook Forum is 27,000 members strong, and is a great source of information, and they allow questions regarding all food allergies. No Nut Traveler and Dining Out with Food Allergies are also great forums. Memberships in Food Allergy Research & Education (FARE) and Northeast Ohio Food Allergy Network (NEOFAN) are also very helpful.

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