My youngest son has never known anything different than having a family consumed with the daily management of Type 1 diabetes (T1D), despite being free of T1D himself. I was seven months pregnant with him when my firstborn son was diagnosed, and the last trimester of my pregnancy was spent in crisis mode: struggling to poke the fingers of a confused, terrified, and unwilling two-year-old to test his blood glucose (BG), and then trying to maneuver his wiggly body around my basketball of a stomach in order to give him his meal and snack-time insulin injections (with my own trembling, terrified hands). I still shudder when I think back to this time in our family’s life.
The excitement of having a new baby in just a few weeks abruptly turned into apprehension about how my husband and I would care for an infant plus a toddler with T1D and food allergies. Somehow we managed those early weeks of our new baby’s life; though don’t ask me to recall any specific details from that time! Sleep, a social life, the wearing of clean clothes… these all went out the window for a good stretch of time while our little family just focused on surviving. This was not the nurturing start I had envisioned for my new baby, nor was it the life I had imagined for my sweet little boy.
With time, and once the steep learning curve of being new “T1D parents” flattened a bit, life became somewhat easier. We adjusted our expectations of parenting and developed our routines, though always centered around BG testing and insulin dosing. We developed our “new normal” – which was different from other families, but it worked for us.
That said, each member of our family has had their own unique experiences and struggles of living alongside our older son’s T1D, focusing today on those of my youngest son. Having a sibling diagnosed with T1D introduces a whole set of concerns into your childhood that other kids typically do not have to consider. As parents stretched to the max trying to make sure everyone in the family is healthy and happy, it is easy to miss some of the concerns of your child(ren) without T1D as you focus so much attention on the more apparent and immediate health needs of your child with T1D. I certainly see this in my own parenting of my sons. Hence, I think it is important to give other T1D parents a “heads up” on some common concerns of the sibling(s) without T1D, along with some possible ways to address these concerns.
Child Concern: Fear. At some point in their sibling relationship, your non-T1D child will likely be exposed to potentially life-threatening emergencies that occur to his sibling with T1D. The sibling may witness low BGs resulting in scary symptoms (e.g., extreme lethargy or unconsciousness) or high BGs resulting in diabetic ketoacidosis (DKA) and hospitalization. Non-T1D siblings also have a front-row seat to more finger pokes, insulin injections, and medical device placements than you could ever imagine. They have seen fear in your eyes when you have responded to your T1D child’s low or high BGs. Your non-T1D kiddos may even harbor a very real fear that their sibling may die from their illness.
Parent Action Steps: Reassure and empower. Without minimizing concerns, provide your non-T1D child with success stories of individuals with T1D, including his brother or sister. Update him on his sibling’s good health after endocrinologist or pediatrician appointments. Teach your non-T1D children about T1D. It is a confusing disease, and they will inevitably be asked questions about T1D by their peers when they spend time around your family. Help your child to feel confident in not only talking about the disease, but also in responding to your child with T1D’s critical health needs if you are not present. Give your child a role (e.g., retriever of fruit snacks or juice boxes) so that he feels empowered and knows what to do for his sibling in case of emergency, but don’t overburden him with responsibilities. The goal is for your child to feel included and part of the family team.
Child Concern: Helicopter parents. It is easy for parents of kids with T1D to want to shelter their kids – to keep them insulated within your own family sphere of predictable eating and playtime schedules, to interact mainly with family and friends who are familiar with the intricacies of your life with T1D, to go out from home only so far before coming back to your safe zone to restock medical supplies and address BG issues. Living this way, children with or without T1D might feel smothered at times, or that they are missing out on some of the adventures that their friends experience.
Parent Action Steps: LIVE BEYOND TYPE 1! Maintaining tight control of your family’s environment and schedule does not promote inspiring, adaptable, successful, or enjoyable living for anyone in your family. To thrive as a family, you will need to seek new adventures, push the boundaries, and stretch your abilities and imaginations together… You won’t neglect your child’s diabetes, of course, but have T1D be a side note to their life. Family life comes first. Take that big vacation, but just envision first all of the worst-case T1D scenarios and plan/pack for them.
Child Concern: Quality time with parents. Your child without T1D notices how much time you spend with your child with T1D. Sometimes they may not notice that much is this time is spent dealing with the health needs of your child. Without this knowledge (or even sometimes with this knowledge), your child without T1D may experience jealous feelings or feelings of loneliness and insecurity.
Parent Action Steps: One-on-one, focused “kid dates.” Make time for daily one-on-one time with each of your children, even if for only 10 minutes at a time; and make the time meaningful – giving the child your full attention during that time and doing something that he enjoys. If you find that you cannot give your non-T1D child all of the attention he needs on a particularly rough diabetes care day, enlist help from a loving grandma/grandpa, aunt/uncle or family friend.
Child Concern: “Do I have to eat that green stuff for dinner?” Food and the timing of meals/snacks can be complicated for siblings of kids with T1D. If the sibling with T1D is diagnosed after your children have coexisted together for several years, the non-T1D sibling might feel some resentment about changes made to your family meals, holiday foods, and the availability of certain snacks to accommodate the T1D sibling’s nutritional needs. As parents, you will probably try to keep things “fair” in regards to food for all of your children (so as to not make your child with T1D feel deprived), which sometimes can result in power struggles about special treats and if/when children are allowed to eat them. For example, brother’s BG checks in at 400 while your family is on a special outing to the county fair, but the non-T1D sibling is starving and just caught whiff of the mini donuts being sold at the vendor up the street. (He was promised these donuts before the outing…and the smells are intoxicating!) His brother obviously needs to wait to eat his mini donuts in order to give his BG time to come down after a correction bolus of insulin. Does the sibling without T1D also have to wait to eat his donuts, just so that everything is fair? If so, be prepared for resentment at times, especially if everyone is starting to feel hangry!
Parent Action Steps: Educate children about nutrition. A ‘diabetes-friendly diet’ is what all people should be eating: whole and non-processed foods that are low in sugar, lean proteins, plenty of veggies and fruits, complex carbohydrates, etc. Learn about healthy eating yourself and teach your kids about nutrition. Let them know that a positive aspect about your child’s diagnosis of T1D is that it is teaching the whole family to eat the way that all people should, benefitting each person’s health over his/her lifetime. Perhaps you can try cooking some meals together as a family that are healthy and appeal to everyone. Treats are just fine in moderation, but try to plan for their timing as well as you can based upon your child’s BG control. Sometimes your T1D child will have to wait to eat his treat, but he can still have it. Sometimes your non-T1D child will have to be understanding and empathetic toward his sibling and practice that “golden rule” – showing kindness to his sibling and waiting to have his treat even when it feels hard or unfair. There are no easy answers here, but we can all practice becoming kinder, more patient family members.
Child Concern: “My needs don’t seem to matter.” Witnessing the attention, time, and money devoted to their sibling with T1D and feeling like their own needs are pushed aside can bring up some feelings of resentment in even the most flexible of children. Also, it can be difficult for our children when T1D-related needs interrupt fun plans, like when an insulin pump needs to be changed while the family is at the water park and everyone needs to pause the fun in order to go to the family changing room to remedy the situation.
Parent Action Steps: Reassurance, empathy, and attention. It can be easy to see your non-T1D child’s health or emotional needs as being less serious than your child with T1D’s needs. However, it is so important to regularly check in with your non-T1D child and listen to what his concerns are. Be careful not to minimize his needs: “emergencies” to your child without T1D may be non-life threatening and seem trivial to you, but they may seem big and important from your child’s perspective. In addition, getting your non-T1D children to the doctor and dentist regularly for well-child checks is important for their health maintenance and the prevention of health issues that can further strain your child and family. The reality of life is that, at times, there may be no money leftover to promptly address the less emergent health needs of certain family members (e.g., braces), but you can start a savings plan for these items and let your child know that you are doing so and have his best interests at heart. Remind your children that fair does not always mean equal, and as members of a family – you all need to look out for each others’ needs, even when it’s not the most convenient timing.
Child Concern: Stressed-out home environment. There are tough phases of life at home when a sibling has diabetes, like when the child with T1D’s BG is difficult to keep under control for a long stretch of time and there are no apparent reasons for this. Fluctuating BGs and tiredness can affect the emotional control of the sibling with T1D, and sometimes the non-T1D sibling can be an easy target for negative emotional release. Parents can buckle under the stress of trying to “do it all” and become short-tempered with the children, who might feel guilty when they cause the family more stress because of their actions. The home environment may feel like the last place a child wants to be some days.
Parent Action Steps: Don’t neglect the mental health of your family, including your own. Your child without T1D may need extra assurance to get over his feelings of guilt at not having T1D, or feelings that he needs to be perfect when he sees you as overburdened by the needs of your child with T1D. Encourage the expression of all of your child’s feelings, even if they include some resentment for the amount of attention given to his sibling, anger about how his sibling treats him when he has fluctuating BGs, or self-consciousness at the medical talk that follows your family wherever you go. Teach your non-T1D child about how BGs can impact his sibling’s emotions for the worse at times so that he can show more understanding and empathy, but also help him develop his own coping strategies to deal with the mood swings. Get out of the house on especially tough days and do something fun together (or apart, if called for!). Look out for your own health too. Speaking from experience, the times of my life when I am under stress and do NOT prioritize working out regularly, proper nutrition, or much-needed occasional “me times” coincide with the times I don’t feel like I have enough energy to handle the needs of my kids. Take care of you so that you can better take care of them.
When properly cultivated by parents, your children’s sibling relationship can become one of the biggest blessings of their life - no matter what challenges the family faces. Friends may come and go depending upon the phases of life of each individual, but siblings can become friends for their entire lives. Likely, your non-T1D child is already one of your T1D child’s biggest advocates and encouragers, even if some days he’d rather not admit it! Looking out for the health and happiness of all members of the family will make a big difference in your family’s shared success with managing whatever T1D throws your way – while having the joyful and abundant family life you've always imagined!
Here's to fun, family togetherness!