“He has type 1 diabetes.” No parent wants to hear these words, and neither do the grandparents. When our younger son married his wonderfully sweet wife who has type 1 diabetes (T1D), we knew that they would encounter some unique challenges. What none of us expected was that their firstborn son would be diagnosed with T1D as a young toddler.
While that fact has changed the dynamics of our family, our church family has made adjustments too. Our church has adapted well through the years to minister to families of kids with diabetes. In fact, my grandson is the third preschooler I have taught at church who was diagnosed with T1D at a young age.
Recently, after meeting a mother at a church in another state whose preteen daughter has T1D, I began thinking of the pervasiveness of this complex disease and how churches can seize opportunities to minister to families of preschoolers, kids, and teens with type 1 diabetes. So, I decided to ask the parents of four children with T1D how the church can better minister to their families. Here’s what they said:
What is your greatest fear when you leave your child in the care of others at church?
- That my young son would have a serious low and no one would know what to do. We didn’t even come back to church for like a month.
- That a high or low blood sugar episode will be perceived as bad behavior. Most of the time these episodes can be avoided if a child wears an insulin sensor, but not every child has that opportunity. This makes it harder to determine whether or not the behavior is blood sugar related or just bad behavior.
- That my child will have a severe low. We also worry the impact that will have on other kids in the children’s area and the teachers/caretakers. It is so important that anyone who is with our child knows she is diabetic, and when she says she is low she needs a snack (it should not be taken lightly).
- The overwhelming feeling of knowing at any moment our child could be taken from us. Our greatest fear when we leave our daughter is that her sensor would be giving an incorrect reading, she would have a dangerous drop, and nobody would know.
What do you want your child’s teachers at church to know about your child and her needs?
- An understanding of symptoms of highs and lows and knowing when to call his parents. I also think a comfort level so that the teacher isn’t panicky is a good thing. Diabetics need normal lives and parents need to feel comfortable leaving them so they can enjoy class as well.
- My son’s needs vary from those of the average child. Sometimes he needs lots of water or an extra snack during class time. Also, being diabetic means he has to potty more often. His moods can change based on how high or low his sugar is, and that can happen very quickly.
- Like all children, our daughter has a special need. We want her to be like all the other kids, but anyone who works with her needs to know that she is made “extra sweet” by God. So it should not be something you worry about, but teachers need to be diligent and pay attention to her needs. Workers need to know that EVERY carb needs to be treated and our child should be able to have what the other kids have as long as she is treated for it. Also, she needs to be able to have water when she asks because water will naturally bring high blood sugars down. Just like children who take medicine for other needs, our daughter does not want attention. She wants to be discreetly told carbs, and she might get defensive when asked about her insulin pump and sensor. She wants to be treated like everyone else. Also, we want leaders and teachers to always reach out to us if there are any questions or concerns.
- We want our daughter’s teachers to know signs and symptoms of a problem, what to do and how to contact us. We want them to know it is a matter of life and death—it cannot wait, no matter what. Her friends are aware of these signs and symptoms and have notified an adult in the past. When our child is dropping she cannot make sense or speak normally. We also would like her teachers to know she doesn’t need to be questioned when eating a donut or any food distributed during an activity. She has the ability to communicate with us and to verify the dosage she puts into her pump. I appreciate it when I get a text from a leader giving me a heads up about what food will be offered during an activity.
What would keep you from allowing your child to participate in church activities on or off the church campus?
- If my child couldn’t independently manage his diabetes, then I wouldn’t be able to let him attend functions such as lock-ins, off-site gatherings, retreats, etc, unless someone could help with that. This is still true in the youth years. My child is now in 9th grade and has yet to go on a retreat, in part because of this.
- Depending on the activity, he might not be able to participate if there is a lot of energy involved in the activity. If someone was not there who could check his sugar or know when he might need to eat something to keep his sugar up, it would worry me that he might go low. Also, if the activity went long enough for him to have to eat something, someone would have to be able to count carbs and give him insulin based on his carb ratio.
- If we felt that someone was not caring for her, that would make it harder for us to let her participate in an activity. We have never felt that way at our church. We have always felt that everyone goes above and beyond to look out for her. For us, the hardest church events are overnight and week-long trips. The church has always allowed me to go to summer camp with the kids to provide support. To be honest, I think we could trust the camp nurse, but as a family we are not ready for that step. I think the most important thing for anyone who is caring for our daughter to know is that if she is not responsive to get medical attention.
- Her safety being compromised could keep us from allowing her to participate in certain activities at church. As she enters the youth group in 1 1/2 years, we will have to rethink Disciple Now, youth camp, scavenger hunts, etc. We will have to figure out how to fly under radar and give freedom while keeping her safe.
What is your church doing well in relation to caring for your child?
- My church has always been amazing where my child is concerned. His teachers have always been interested in knowing what they can do to help so that he is able to attend class.
- Our son’s teachers and those he comes into contact with are constantly aware of what he is eating and how much. They then relay that information to us, his parents, so we can give him insulin. They are also attuned to his moods and check his sensor if his mood changes. They are very flexible and patient when it comes to dealing with him.
- Communicating and doing what is needed to protect our daughter.
- Our church is doing a fantastic job in caring for our daughter. We can text her leaders and/or staff members if anything is needed. They even have provided us with a monthly date night that has been a tremendous blessing. She enjoys this “Preteen Night Out “ more than any other activity! She’s just like every other child when she’s at church because of what our staff does to make this possible. If a children’s ministry is run like a recreation center then this built-in protection doesn’t work. Our staff plans strategically and effectively executes the ministries that operate within the umbrella of the children’s ministry. It is because of clearly communicated information, safe environments, and highly trained volunteers and staff that I can honestly say that we are 100% confident in our church’s ability to respond to our child’s medical needs.
In what ways could your church improve in ministering to your child and your family?
- Honestly, your child being diagnosed with diabetes is devastating. It takes you completely off guard and changes every single thing about life as you know it. I remember feeling helpless and lost. I could barely function for months. It was probably the worst period of my life—or at least akin to some of the worst things I’ve ever been through. You feel so alone. People really don’t understand. I sat awake many nights watching my son breathe in those early days because I was terrified that he might die in his sleep. It was crippling. The financial burden can be quite heavy. I think just verbal support, maybe a care team, meal train, a pastoral visit, cards, etc. would be great. Even people who are willing to learn how to take care of your child and offer to babysit would be so welcomed. You can’t leave a diabetic child with just anyone. There were years that it was me, his dad, or my mom that could keep him and that was absolutely all the help I had.
- Always make sure there is someone in the room (especially during Extended Teaching Care) who knows about my son’s condition and will know if and when to contact us (his parents) for help.
- We are very fortunate—or unfortunate, depending on how you look at it—to have several families impacted by T1D. I can remember two different moms calling me or finding me at church to grieve with me. One of those moms told me that it is almost like you are grieving because you know that your child will never be the same. It is important for the church family to be there for the parents as they navigate a whole new world.
- I realize not all children’s ministries are run like ours. Certain things must be in place to have an effective plan for children with T1D. The things that must be in place are consistent staff with an awareness of the disease, consistent teachers, and a plan of action in the event of an emergency. A non-chaotic environment is a necessity. I think an annual meeting with a staff member, the child, and his or her parents, would be good to evaluate what went well and what could use improvement. I want to know how to better put her leaders at ease and educate them. I want to know how I can make things easier on staff if there is something that is complicated. I think churches should have an awareness of what T1D is and isn’t, and the amazing role they can play in loving a family and shaping the heart of a child.
Is there anything else you want churches to consider related to children with diabetes?
- Caring for a child with diabetes is not something to be feared. If teachers and caregivers have an understanding of what they need to do to help the child, the child with T1D will be able to function and learn about the love of Jesus just like any other child.
- The biggest thing is to treat diabetic children just like the other kids but be aware that they may need special treats, extra water, or a text message to mom during VBS asking the carbs in the snack.
Parents of kids with T1D want their church family to love and accept their child, be aware of their child’s special needs, respond to those needs appropriately, help their child have as normal of an experience at church events as possible, and always communicate regularly with parents.
Remember, kids with T1D don’t want to be coddled or singled out. So, let’s partner with parents to ensure that all kids can have fun with friends as they learn about Jesus at church.
Landry Holmes is the Manager of Lifeway Kids Ministry Publishing. A graduate of Howard Payne University and Southwestern Baptist Theological Seminary, Landry served on church staffs before joining Lifeway Kids. He is a church leader, writer, workshop facilitator, and publisher. Landry also teaches children at his church in Middle Tennessee. He and his wife Janetta are the parents of two adult sons and two daughters-in-law, and the grandparents of four adorable grandchildren.