A palliative care provider, psychologist, social worker, chaplain, grief counselor and/or spiritual leader can help identify issues and talk through concerns. A child-life specialist can help create moments of connection. Your child’s primary physician knows the family and can offer insight. A teacher, guidance counselor, school nurse or other trusted staff member can support siblings and be an important point of contact for you.
Supporting the Siblings
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The entire family unit is affected by the diagnosis of a serious illness. You may worry about parenting your other children when so much of your energy and emotions are focused on the sick child. Siblings may worry about you, about their sibling(s), and about the future of the family. You can better understand their experience and strengthen your relationships by being aware of their concerns, identifying behaviors that signal their worries, talking together, and seeking outside support if needed.
Sibling’s Feelings and Questions
There is no way to see inside to what a sibling might be feeling, and certainly not all siblings feel or experience things in the same way. Even those within the same family can have very different reactions to living with a sibling with SNI, and those reactions can change over time.
It is certainly not unusual for children to have their own interpretation of events and their own concerns and worries. They will have questions. Some may be very direct with their inquiries, while others may be more reserved or may even choose to keep their questions to themselves (or seek information outside the home). It’s important to answer as fully and truthfully as possible. Your answers will be best when you respond only to what is being asked. A helpful strategy to gain a greater understanding of what is really being asked is to answer their question with another question. For example, try answering, “That’s a great question. What do you think?” This strategy allows you to learn what your child already knows or has predicted, and respond appropriately. If siblings never ask, provide opportunities and keep them updated on the situation. Remember, too, that it is okay to be honest about not knowing answers. Your pediatrician or a social worker can help you with language if needed.
Time for the Siblings
No one can be in two places at one time, and you may find it difficult to leave your sick child so that you can spend time with your other children. But it goes without saying that it is important to make time just for siblings. Remember, you are doing the best you can. Your children see that, and it never hurts to calmly acknowledge the impact that the demands of the situation are having on everyone.
Try to have at least one caregiver attend school and sporting events, recitals, or other special days whenever possible. Consider planning special outings, or regular “dates” with just you and the sibling(s) to do something fun together. There will be times that these things may not be possible, and you may feel stretched thin trying to be the best parent possible for all your children. Know that making the effort whenever you can, and talking with the siblings openly and honestly when you can’t, will help you maintain a loving connection where siblings feel seen and valued.
Your child’s illness will be a defining feature of their siblings’ lives. While there will certainly be challenges, with adequate support many siblings develop a deep sense of compassion, caring, and understanding through their experience.
Children take their cues from the adults around them. They often sense sadness, tension, or worry, even when it is not spoken. Many children want to protect and care for their parents. This instinct can leave them feeling responsible for their parents’ emotions. Modeling healthy expressions of emotion will help your children learn that you are open with your feelings and that you welcome their expressions of feelings also. Having difficult conversations in a way that is age-appropriate will strengthen their trust in you and your bond with them. Disguising or dismissing your feelings, even if you want to be protective, may increase their anxiety. And, seeking support will signal to your children that it’s good to acknowledge feelings and find help if needed.
Common Sibling Responses
It is important to keep in mind that how children respond depends largely on their age and level of maturity. Some common experiences are:
Feeling Abandoned or Invisible
Though siblings often understand the increased demands on their parents, they still report feeling pushed aside or shuffled to other caregivers. Siblings often describe feeling overshadowed by the sick child, stating that they feel invisible, as if their accomplishments, activities, joys or interests are no longer seen and valued. These feelings may make them hesitate to ask for attention out of fear of seeming selfish. Or they may act out in an effort to get attention.
Pressure to Achieve
Siblings are often worried about burdening their parents. Some seek to cause little trouble and to behave well because they know the family is already dealing with a lot. They may feel they must somehow compensate for their sibling’s special needs and set unrealistically high expectations for themselves. This is a big burden for a child. Again, a therapist or even a teacher can be helpful in supporting the sibling(s) and caregivers through this.
Fear of the Future
For very young children, the concept of the future is very hard to grasp. As children age, they are better able to grasp the implications of having a sibling with a serious illness. They have many of the same concerns parents have regarding care of the sick child and end of life. The child may have separation anxiety and not want the parent or sibling to leave their side, or they may have trouble focusing on their own future.
Jealousy
Children may be jealous over how much time and attention their sibling is receiving. They may act out as a way of expressing their jealousy, or they may become more withdrawn. Siblings may state that they wish they were sick, too, so they could get attention. They may even pretend to be ill. This can be alarming for a parent but is a natural response.
Wanting to be Involved
Wherever possible, invite your other children to be helpful so they can feel included. For example, they can help with bath time, feeding, dressing, or playing. If your child is in the hospital, bring the siblings in so they can see what the room looks like, what the playroom looks like so that the hospital is not a scary place. Even spending just an hour at the hospital can be very helpful.
Feeling Alone or Isolated
Just like parents, siblings need peers who can truly understand and empathize with their unique situation. They need to know that they are not alone, but finding others who are experiencing a similar family dynamic may be difficult for siblings. A social worker can help you locate support groups or gatherings of siblings.
Guilt ... or Relief
Children may question why this happened to their sibling, and not to them. Or, they may feel responsibility, worry or guilt that their actions caused this problem for their sibling. Alongside the guilt, they may also be experiencing relief that it was not they who was diagnosed with a disease.
Acting Out
Siblings may exhibit signs of confusion, anger and/or grief in behaviors meant to attract parental attention. They may have tantrums, experiment with reckless conduct, and even avoid their family members or friends. Early intervention from a school or other counselor can be helpful.
Embarrassment
It is natural for a child to at some point be embarrassed by their sibling, and it often is the case when the sibling is not typical. How the child reacts to their sibling’s behavior will depend on circumstances and their age. The embarrassment may be complicated by feelings of anger or guilt.
