Learn more about resources and services available for siblings of patients in both inpatient and outpatient settings at Kennedy Krieger Institute.
Super Siblings Support Guide
At Kennedy Krieger Institute, your child’s interdisciplinary team is here to care for your entire family. We know that when a child has complex medical needs, their siblings are affected. They want to support their sibling with complex medical needs, but they also have their own unique experiences, thoughts, emotions and needs.
This guide offers suggestions and ideas for each age group of siblings of children with complex medical needs, including:
- Descriptions of siblings’ common challenges and reactions
- Strategies that family members and caregivers can use to support siblings
The age groups of siblings covered in this guide are:
- Infants
- Toddlers
- Preschoolers
- Elementary and middle school-age children
- Adolescents
Infants are trying to figure out their world. They are quickly learning that their caregivers are here to nurture and love them, and that their actions have an impact on the world around them. Infants gather information about the world through their senses: sight, smell, taste, touch and hearing.
Challenges
- Separation from caregivers due to a sibling’s hospital stays, appointments and/or other care needs
- Loss of routine due to a sibling’s care needs
Reactions
- Increased fussiness, as shown by clinginess and difficulty separating from caregivers during transitions
Strategies for Caregivers
- Develop a consistent routine as much as possible.
- This helps build a trusting relationship with your child.
- Lean on the support of family and friends.
During Your Outpatient Visits
- Share any concerns you may have, including about any behavioral changes you may have observed, with your child’s care team to be
connected with a child life specialist. - Inform your care team if you need privacy to pump or breastfeed during your appointment.
During Your Hospital Stay
- A child life specialist can coordinate sibling playtime with infant mats and toys.
- Door signs and/or private spaces are available for breastfeeding and pumping.
Toddlers are constantly on the go, exploring and learning about their environment. Their desire for independence is growing, as are their vocabulary and their ability to communicate thoughts and emotions. They have a limited understanding of other people’s points of view and are generally unsure of new people who come into their world.
Challenges
- Separation from caregivers due to a sibling’s hospital stays, appointments and/or other care needs
- Loss of routine due to a sibling’s care needs
- Loss of sense of control—for example, they don’t understand why playtime may be cut short due to a sibling’s care needs
- Missing their absent caregiver or sibling with complex medical needs
Reactions
- Setback in previously acquired skills (for example, potty-training) in response to a sibling’s hospitalization or from separation from caregivers
- Increased tantrums or clinginess to caregivers after a caregiver’s extended absence
Strategies for Caregivers
- Develop a consistent routine as much as possible. This helps build a trusting relationship with your child.
- Read books with your child about emotions and feelings. (Ask your child life specialist to recommend titles.)
- Dedicate one-on-one time with your child as much as possible. For example, spend 15 minutes together taking a walk or reading a book.
- Record a video of you reading a favorite story to your child that can be replayed in your absence, or plan a time to read a book to them via video chat.
During Your Outpatient Visits
- Please feel free to ask the clinic staff to bring toys and/or other distracting or engaging activities to the exam room for the appointment.
During Your Hospital Stay
- Your child may sign out toys from the Rec Room to use in hospital rooms.
- A child life specialist can coordinate sibling playtime, visits and/or other sibling support needs.
Preschoolers are on the move! They are spending more time with peers, through day care or school, for example. As a result, they are building friendships and slowly becoming aware of the emotions of others. Preschoolers constantly attempt to do things by themselves.
Challenges
- Separation from caregivers due to a sibling’s hospital stays, appointments and/or other care needs
- Loss of routine due to a sibling’s care needs
- Fear of the unknown—for example, they may wonder, “Where is my sibling going?”
- Limited understanding of sibling’s diagnosis and needs, but a gradual understanding that their sibling is different
Reactions
- Jealous of the attention given to their sibling with complex needs
- Increased tantrums or clinginess to caregivers after a caregiver’s extended absence
- Wants to help—attempts to be involved in their sibling’s care and/or shows curiosity about medical equipment (wheelchair, G-tube, etc.) in the home
Strategies for Caregivers
- Develop a consistent routine as much as possible. This helps build a trusting relationship with your child.
- Read books with your child that focus on the sibling experience. (Ask your child life specialist to recommend titles.)
- Dedicate one-on-one time with your child as much as possible. For example, spend 15 minutes together taking a walk or reading a book.
- Model appropriate ways siblings can play together.
- Give your child a job or a way to be involved in their sibling’s care, such as gathering supplies like wipes, diapers or toys.
- Give positive praise for helpful behaviors.
- Provide developmentally appropriate information about their sibling’s diagnosis. Assure them that their sibling’s diagnosis is not their fault.
During Your Outpatient Visits
- Please feel free to ask the clinic staff to bring toys and/or other distracting or engaging activities to the exam room for the appointment.
- A child life specialist is available to help talk about medical concepts with your child during the appointment, or via phone and/or email.
- Check with clinic staff to see if the patient’s siblings can use the outpatient playroom during the appointment.
During Your Hospital Stay
- Your child may sign out toys from the Rec Room to use in hospital rooms.
- A child life specialist can coordinate sibling playtime, visits and/or other sibling support needs.
- The child life team can provide patient- and sibling-specific resources, such as children’s books, about their sibling’s illness or injury.
Children ages 6 through 12 are exploring their own hobbies and interests. Their self-confidence grows as they develop new skills and receive praise from others.
Challenges
- Fear of the unknown—for example, they may wonder, “Where is my sibling going?”
- Increased understanding that their sibling is different from others
- Reduced time and attention from other family members due to their sibling’s complex needs
- Feeling isolated from peers due to their unique experiences
Reactions
- Jealous of the attention given to their sibling with complex needs
- Wants to be “the good kid” or a perfectionist
- Wants to help—attempts to be involved in their sibling’s care and/or shows curiosity about medical equipment (wheelchair, G-tube, etc.) in the home
- Wants to protect or defend their sibling from insensitive comments and teasing from peers
Strategies for Caregivers
- Dedicate one-on-one time with your child as much as possible. For example, spend 15 minutes together taking a walk or reading a book.
- Give your child a job or a way to be involved in their sibling’s care, such as gathering supplies like wipes, diapers or toys.
- Give positive praise for helpful behaviors.
- Remind your child that they don’t have to be perfect. Help them set realistic expectations.
- Provide developmentally appropriate information about their sibling’s diagnosis. Assure them that their sibling’s diagnosis is not their fault.
- Remind your child that it is OK to feel frustrated or embarrassed by their sibling, at times. Assure them that they may express these emotions to you and can ask you questions if they don’t have an understanding of their sibling’s needs.
During Your Outpatient Visits
Please feel free to ask the clinic staff to bring toys and/or other distracting or engaging activities to the exam room for the appointment.
- A child life specialist is available to help talk about medical concepts with your child during the appointment, or via phone and/or email.
- Check with clinic staff to see if the patient’s siblings can use the outpatient playroom during the appointment.
During Your Hospital Stay
- Your child may sign out toys from the Rec Room to use in hospital rooms.
- A child life specialist can coordinate sibling playtime, visits and/or other sibling support needs.
- The child life team can provide patient- and sibling-specific resources, such as children’s books, about their sibling’s illness or injury.
- The child life team can provide one-on-one educational and therapeutic interventions for your child—in person or virtually—during their sibling’s admission.
Teenagers are developing their own values and sense of self, and identifying what is most important to them. They are starting to think about their future and how their decisions impact those around them.
Challenges
- Reduced time and attention from other family members due to their sibling’s complex needs
- Feeling isolated from peers due to their unique experiences
- Concerns about how their decisions might affect their sibling and caregivers—they may wonder, “What if I want to move away one day?”
Reactions
- Jealous of the attention given to their sibling with complex needs
- Wants to be “the good kid” or a perfectionist
- Wants to protect or defend their sibling from insensitive comments and teasing from peers
- Increased capacity for empathy and tolerance of others
- Takes on the caregiver role
Strategies for Caregivers
- Consider having your child join a support group to meet other kids with similar experiences.
- Dedicate one-on-one time with your child as much as possible. For example, take a 15-minute walk together or talk about their interests and hobbies.
- Remind your child that they do not have to be perfect. Help them set realistic expectations.
- Provide developmentally appropriate information about their sibling’s diagnosis. Assure them that their sibling’s diagnosis is not their fault.
- Tell your child that it is OK to feel frustrated or embarrassed by their sibling, at times. Assure them that they may express these emotions to you and can ask you questions if they have concerns about the future.
During Your Outpatient Visits
- Please feel free to ask the clinic staff to bring books and/or other distracting or engaging activities to the exam room for the appointment.
- A child life specialist is available to help talk about medical concepts with your child during the appointment, or via phone and/or email.
- Check with clinic staff to see if the patient’s siblings can use the outpatient playroom during the appointment.
During Your Hospital Stay
- Adolescents may accompany caregivers to the playroom for sibling playtime.
- A child life specialist can coordinate sibling playtime, visits and/or other sibling support needs.
- The child life team can provide patient and sibling-specific resources, such as books or other resources, about their sibling’s illness or injury.
- The child life team can provide one-on-one educational and therapeutic interventions for your child—in person or virtually—during their sibling’s admission.
- For additional support or specific requests, a child life specialist is available to speak with your child about their sibling’s diagnosis.
Inpatient Services
During your child’s inpatient stay, they will meet with a recreation therapist and a child life specialist. Both will help your other children feel involved in the care of your hospitalized child. Your child’s child life specialist can set up one-on-one sessions—either virtually or in person—to provide educational and emotional support tailored to the needs of your family. This support can help children and teens understand why their sibling is in the hospital and learn more about their sibling’s diagnosis and explore the various pieces of medical equipment their sibling might be using. Recreation therapists collaborate with child life specialists to help siblings learn fun and adaptive play techniques to engage their hospitalized sibling in activities. If you are interested in coordinating support for a sibling, please contact your child’s child life specialist.
We love it when siblings come to visit their hospitalized sibling! Contact your case manager for the most updated visitation policies.
Kids who stay at Kennedy Krieger often participate in rehabilitation services to help their bodies get stronger. Kids come to Kennedy Krieger for many different reasons and may receive different types of therapies. The therapies here help patients get stronger. During down time, kids have opportunities to have fun and play games. Doctors and nurses care for kids here to help their bodies heal. Children and teens at Kennedy Krieger participate in therapies to help their bodies get stronger. In between therapies, kids here have many opportunities to have fun and play games. Kids at Kennedy Krieger are also cared for by nurses and doctors who make sure their bodies are healing, inside and out.
The Soaring Siblings subscription box service is available to families of patients of Kennedy Krieger’s Inpatient Rehabilitation, Feeding and Epilepsy Monitoring Unit. Patients with siblings ages 6 to 12 are eligible for enrollment during their inpatient stay.
Once enrolled, families will receive a subscription box every three months. Each box will include:
- Family game: Cultivates the sibling bond—perfect for family game night!
- Art activity: Promotes individuality and self-expression.
- Therapeutic activity: Provides therapeutic intervention related to coping and education about the hospital and the body.
- Flight cards: Collectable trading cards that promote healthcare education by highlighting different staff members who work in the hospital and their jobs, or information about different body parts, etc.
- Toys: A variety of toys, knick-knacks and more to promote fun!
After 12 months of enrollment, families will be automatically unenrolled, and each sibling will “graduate” as a Soaring Sibling! Reach out to your child’s child life specialist or social worker for more information about enrollment.
- Facilitate a video call between your hospitalized child and their sibling—your child life specialist can help with this.
- Play your family’s favorite board or card game together over the phone.
- Help your children write letters to each other, including pictures if appropriate.
Outpatient Services
Child life specialists are available at our 801 Broadway location, during a sibling’s appointment or at other times convenient for your family. They can meet with your other children, virtually or in person, to promote their understanding of their sibling’s diagnosis or needs. Child life specialists use developmentally appropriate tools to explain different diagnoses, equipment and medical encounters. Child life sibling sessions are available at no cost to families. Please email OPChildLife@KennedyKrieger.org to learn more.
Kennedy Krieger is excited to offer Sibshops, a nationally recognized program for siblings (ages 8 to 12) of complex and/or chronically ill children, for the siblings of patients receiving outpatient medical care at the Institute. Sibshops focus on these siblings’ well-being, as siblings experience stressors and challenging emotions just like parents and caregivers do. Siblings can feel sad, ignored, worried, angry, lonely or even guilty—all perfectly normal feelings for a child to navigate. During group sessions, siblings play games and participate in age-appropriate activities that promote self-confidence, understanding and empathy. Through these activities, siblings meet other children in similar situations and provide support for each other. Sibshops are offered quarterly by Kennedy Krieger on Saturdays at Ronald McDonald House Charities® Maryland, just a few blocks from Kennedy Krieger’s downtown Baltimore campus.
Short on time? Here are a dozen 15-minute activities you can do with your kids between medical appointments to have fun and help siblings bond:
- Make music with household items
- Play “I Spy”
- Go for a walk in nature
- Make a fort
- Do a scavenger hunt
- Draw a picture of a favorite memory together
- Read a book
- Draw goofy self-portraits of each other
- Make an obstacle course
- Create a playlist of your favorite music together
- Take a 15-minute walk and talk about three “highs” or “lows” of the day
- Make a snack or meal together