My son was diagnosed with life-threatening food allergies at a little over one year old. I leaned a lot on God that year of the diagnosis, I’m not sure what I would have done without His support. There came a point for me when I just had to throw up my hands and say, “I’m doing everything I know how to do to keep my child safe, but I can’t do it alone. Dear God, please guide us through this day by day and week by week and keep him safe when I cannot.” So, it was ironic, and maybe a blessing in disguise, that Sunday school became a symbolic fork in the road for our journey with food allergies.
Even though my husband and I attended church on a somewhat regular basis, we hadn’t gone much the year my son was an infant because of all the food allergy symptoms (before we knew that is what they were) and just safeguarding our newborn against extra germs at a time when the flu is usually at its peak.
One Sunday we decided to try it. I made sure my son’s caregivers knew about his allergies, the emergency action plan, and safe snacking practices…and felt confident…as confident as a new mother of a child with food allergies will ever feel anyway. I tried unsuccessfully to concentrate on the sermon in the sanctuary and then anxiously bolted when the service was over so I could check on my son. To my dismay, there was a whole new set of caregivers in the nursery…caregivers I had NOT trained on his allergies, emergency action plan, and safe snacking practices. I was terrified about the shift change and horrified at the long list of things that could have happened.
At a time when food allergies were still somewhat rare, I was unsure how to advocate for my son and then wondered if advocating for him would be enough to keep him safe at church. I ultimately decided to ask our parents to watch my son on the days my husband and I went to church and if they weren’t available, we didn’t go at all.
Looking back on that day, I am disappointed in myself. I don’t regret making a safe choice for my son…especially at an age when he didn’t really have a voice of his own. But I am disappointed that I chose to make do with what I had instead of advocating for my son so he could be a part of the group instead of standing on the outside looking in.
My son is now seven years old and has participated in church regularly for the past several years. True, there is more peace of mind with me advocating for my son when I drop him off AND him being able to advocate for himself during class. But I firmly believe it’s more important to start somewhere, even if it’s late, than never trying at all.
Each Sunday we pack a safe snack, educate all teachers that will be handing his class, and remind him to advocate for himself if we’re not there to do it. He LOVES Sunday school and being part of a class at church. Now, it is just another way he is included among his peers.
I realize that not all parents of children with food allergies handle their children’s activities the same way, but I want my son to be able to be a part of whatever he chooses to be a part of…and do it safely. I want him to always feel included and never excluded. Over the years, I’ve learned this inclusion doesn’t always come naturally, which means I have to be willing to step up to the plate and advocate for my son.
In my experience, the vast majority of individuals I speak to when advocating for my child are more than happy to accommodate me in some way if I educate them as to my child’s needs, but I have to SPEAK UP to be heard.
I find that advocating with a smile and firm patience gets things rolling in the right direction much faster than accusing, blaming, and belittling your audience. In fairness, your audience may know absolutely NOTHING about food allergies. “Ridiculous!” you say. Okay, go-time. What can you tell me about juvenile diabetes? Cancer? Obesity? Autism? Hmmmm…changes our perspective a bit, doesn’t it?
Not all confrontations will go smoothly, but on the whole advocating for your child will be much more productive when approaching the situation with kindness and respect for all involved while still maintaining your child’s safety and best interests. With a little luck, your child will see you in action and learn how to effectively deal with his or her own adversity in a healthy way.