Raising a Child with Chronic Illness is a Family Affair
Remember Siblings to Maintain Family Harmony
Parents of a child with chronic illness have many tasks – doctor visits, treatments, therapy, testing, monitoring to name a few. Mothers and fathers cope with their own feelings and fears in addition to household and work responsibilities. It is an exhausting and overwhelming journey. Realize that every member of the family is affected- especially siblings both younger and older! Here are a few ways to help siblings of a child with chronic illness..
Don’t think that because they are not ill that they are fine on their own. They may need extra one-on-one attention at times. Siblings are not extra parents- they are children with their own needs and abilities. Even if the ill child has limitations everyone in the family should pitch in on chores no matter how minor so it feels equitable. Depending on their capabilities let each help in an age-appropriate way. Reward them and praise their involvement generously.
Siblings may worry about getting chronic illness – “am I next”? Many different illnesses run in families such as diabetes, depression, cystic fibrosis, sickle cell, heart disease, thyroid disease, growth issues – other conditions do not. As many as 30 % of children have chronic diseases during childhood with different degrees of severity. Honest answers are important. Let children know these diseases are not contagious! For some conditions, there could be an increased chance of getting a disease but it is not for sure. Reassure them that everyone in the family will always get the help and care they need.
Chronic illness takes a lot of parental time and energy which is diverted from other family members. All children need and seek attention, and siblings may act out with extra good or especially bad behavior. Acknowledge the good behaviors. Pay individual attention to the details of what the sibling does in school or outside activities. To avoid behavior conflicts, keep communication open and give the gift of time. Plan individual time perhaps a “date “with the other children. Alternate responsibilities with your spouse or partner. If possible, get a babysitter or extended family to help watch the ill child and go to the library, the park, the movies, a special treat, or just play ball! It does not need to be an extravagant activity, rather a meaningful one for the sibling. Allow the sib to express their feelings and frustrations through play and experiences.
Guilt is not good for anyone in the family so let it go. No one asks for disease to happen there is no fault. Help your child understand that none of their actions or yours made their sibling ill. Explain that sometimes things happen without our control. Return to a family routine understanding that there may be a new normal. Bring your child’s unaffected sibling to a doctor’s visit. It may demystify the illness and minimize separation issues. Counseling for the child and family may help. Seek out disease-based sibling groups. Sometimes the well-child may not adjust as well as the child who is ill in the long term. However, there can be positive impacts such as increased maturity, compassion, and empathy. Many siblings of chronically ill children find careers in healthcare.
Remember that as parents, you are part of the family. You need to take care of yourself before you can effectively take care of others. Arrange your schedule so you can have some time for yourself. Go out for a meal or on a “date” with your spouse or partner even if it is to the grocery store. Reconnect with friends and family if they are supportive. Be kind to yourself. If exercise is your passion then go to the gym. Don’t skip meals or your own health visits. Seek out counseling (individual or family) or parent groups. It won’t make your child well if you sacrifice yourself in the process. One technique to handle the stress of raising a child with chronic illness is to learn mindfulness. You can use these techniques to purposefully bring your attention to the present in a positive way.
We want to hear from you. What tips do you have?