By: Shelby Myers, BAYADA Special Needs Advocate
When my six-year-old son Clay became seriously ill, my daughter was 11 and their baby brother was only 9 months old. Suddenly, our world changed dramatically—from living like any other typical family to having an Intensive Care Unit in our home. For our baby boy and newborn twins to follow, this was the only life they ever knew. For our oldest, though, I’m certain she felt shock and disorientation. It’s hard enough to be an adolescent in middle school. Now she was coming of age with nurses in our home 16 hours a day.
Parents of children with special needs understand how hard and isolating family life can be. You do what you have to do, when you have to do it. And when your medically-fragile child has an emergent health problem, you respond—such as the time we took Clay to the hospital for a medical crisis as soon as his brother blew out his birthday candles. It’s not easy. It’s not ideal. Siblings understand that too, but it doesn’t change the fact that children can feel sad when they are inadvertently left out. All children want to know they are special in their parents’ eyes.
What Does the Research Say?
Research has shown some positive impacts on the resilience of children living with a sibling who requires special care. As a group, children in families with a sibling who has a disability tend to exhibit greater independence, maturity, patience, and kindness than their peers. According to interviews, however, siblings of children with special needs also report feelings of loneliness, responsibility, fear, jealousy, guilt, and resentment. Often, they perceive a decrease in normal family activities and feel pushed to the background. For younger children, this may manifest with irritable and withdrawn behavior. Older children may act out.
How Parents Can Help
- Communicate. Children have a limited ability to interpret the things they see and hear around them, and their feelings can be masked by a desire to protect their parents from additional burden. In age-appropriate ways, be proactive and explain to them what’s going on with their sibling’s medical condition and health care. One-on-one, ask your children how they’re feeling. Ask if they have any questions. Let them know that their feelings are okay and normal, and your lines of communication are open. Children need to hear their parents love them and are there for them.
- Make quality time. One-on-one time with each child is crucial to helping them realize their thoughts and questions are important to you. Find a way to have regularly scheduled time together, one-on-one, maybe once a week or once a month. If you’re needed in the hospital, that quality time can be a phone call. When another caregiver can relieve you, play outside or go somewhere together to make one child your center of focus. This can reassure children, decrease separation anxiety, and create a feeling of belonging.
- Choose a buddy. See if you can identify an adult in your life you can trust to talk to each child. Maybe it’s a grandparent, aunt, or uncle. Who can create a safe space for that child to sometimes walk away from what’s happening at home? Tap this person to have an open-door policy and to plan special one-on-one time with your child. This can be a wonderful support system for you, especially at those times when you need to drop everything, and also for the child who may not want to discuss some sensitive issues with their parents.
- Show positivity. Be mindful of the outlook you model for your children—and try to keep it positive. Positive attitudes about your atypical child’s abilities, and your efforts to promote normalcy in your family, can have a positive influence on sibling attitudes and behaviors. For example, you can promote normalcy and bonding by including your medically-fragile child in as many family activities as possible. Or, engage your children with each other by telling them how they can help their sibling feel better.
- Find a therapist. Even with strong family support systems, children really can benefit from having an objective professional to talk to. To find a family therapist, you can ask your pediatric hospital, your social worker, your BAYADA Clinical Manager, or your pediatrician. The special needs community is tight-knit; if you know another family or a professional who works in the field, ask them. The cost for therapy may be covered by a behavioral health insurance benefit or Employee Assistance Program (EAP).
- Join a support group. Children’s hospitals usually have local support groups and other programs like art therapy for families living with serious illness or disability. The Sibling Support Project is a nationwide program that connects peers, offers resources and online groups, and can help you find—or start—a local support group they call Sibshops. Check them out at www.siblingsupport.org. And there are lots of social media groups out there. In New Jersey, we now have over 100 participants in our private Facebook group for medically-fragile families, where we offer online peer support and an in-person speaker series. Speak to your local BAYADA office to learn about support programs in your area.
Shelby Myers is pictured with her son, Clayton.
Shelby Myers is the mother of 5 children and has been married since 1992. She is the founder and Director of Marketing and Public Relations for Clayton's Hope Organization, a non-profit which raises awareness and funding for Epilepsy research. In 2012, she was named the Epilepsy Advocate of the Year by the Epilepsy Foundation of New Jersey/Family Resource Network. She was nominated to the State of New Jersey Epilepsy Task force and elected chair, for which she served until its completion in 2013. She has been a speaker for events such as the NCN Conference, CHOP PACT Conference and Rowan 3 year Resident Symposium on Palliative Care. Her first published work is, "Out of the Bubble," a book about her son’s life-altering illness and the change in "normalcy" her family encountered through their journey. She feels her most rewarding role, aside from motherhood, is helping families advocate for their children through her role as a BAYADA Pediatrics Special Needs Advocate.