You may be concerned about the impact a new baby brother or sister with a medical condition or special need may have on other siblings. Fortunately, there has been considerable research into this question. Like all families, interactions between children vary from one family to another and from one time to another and can include both challenges and rewards. There are some sibling dynamics that are more typical to families with special needs children.
Studies have shown some unique positive benefits for siblings. A study looking at the quality of relationships between typically developing children and their siblings with and without intellectual disability found “that children with siblings with intellectual disabilities scored higher on empathy, teaching and closeness, and scored lower on conflict and rivalry than those with typically developing siblings.”1
One study exploring the experiences of siblings of children with physical disabilities concluded “The brothers and sisters generally did not experience many significant problems, however, a minority of the children did experience problems for which they would like help. In addition, they reported joys as well as problems.”2 Challenges typically encountered for siblings include receiving adequate time and attention from parents, taking on too much family responsibility, and feelings of loneliness and isolation.3 The good news is there are well-understood approaches for addressing these concerns and there are many books, blogs, and support resources to help parents navigate these challenges. Many are listed in the diagnosis-specific support resources of this website.
We encourage you to look at the parent and family stories in the diagnosis section of this website to hear some first-hand experiences of families with children with special needs.
Often friends and family members are uncertain how to react to the news of a prenatal diagnosis. Some may not understand a decision to carry to term, but it is important that they understand your right to direct care for yourself and your baby. As they come to understand your relationship with your baby, loved ones will almost always support you, even if they initially did not.
Sources:
- https://www.sciencedirect.com/science/article/abs/pii/S0891422219302045
- https://www.semanticscholar.org/paper/Experiences-of-siblings-of-children-with-physical-Cate-Loots/255d29e49869d829519d99c90e01d056dba2ed56
- https://www.qicreative.com/news/siblings-of-children-with-special-needs
Here are some resources and readings specifically oriented around sibling care:
Support Organizations when Sibling has a Disability or Medical Needs
The Beads of Courage® Sibling Program is designed to provide recognition and support of a sibling’s emotional journey when the serious illness of a brother or sister impacts their lives. The program focuses on themes which help siblings cope as well as talking points to encourage communication and healing opportunities.
We believe individuals with disabilities have the same rights as all members of society to dignity, respect and the opportunity to grow and to be productive members of their communities. We believe siblings of individuals with disabilities can have a powerful, positive impact on their siblings’ experiences, and are uniquely positioned to help ensure their present and future care in partnership with service organizations and government. We believe in promoting the rights of our brothers and sisters, and of all individuals with disabilities; we are committed to advocating for policies and services that meet their needs. We believe siblings can be of great support to one another to enhance both our lives and the lives of our siblings.
Founded in 1990, the Sibling Support Project is the first national program dedicated to the lifelong and ever-changing concerns of millions of brothers and sisters of people with special health, developmental, and mental health concerns. We are proud to be a program of Kindering. Our work spans books and publications, online communities for teen and adult siblings, and workshops and training. We are best known for helping local communities start Sibshops—lively peer support groups for school-age brothers and sisters of kids with disabilities and health concerns.
Siblings with a Mission serves and supports siblings and families of individuals with complex health conditions and developmental disabilities.
Reading:
Always My Twin, for young children who have experienced the death of their twin sibling, is a book for any child whose twin died before birth, after birth or as a young child. The story is based on the author's own experience of losing a newborn twin daughter in 2002. The book tells the story through the eyes of a young girl whose twin sister dies shortly after their births.
In a language kids can understand, Randy Alcorn explores Biblical answers to the questions kids often have about heaven. As in the adult title, Heaven, he addresses the difference between the present Heaven, where we go when we die, and the New Earth, where we will live forever with Jesus after he returns. Intended for kids age 8-12, Heaven for Kids is sure to be an excellent resource for families, especially those in which the parents have read the adult title and wish to pass on that same level of understanding to their children. The book features 10 chapters of questions and answers based on scripture and written in a style relevant to today's kids. The book also has a summary of the Gospel for those who want to be sure they are going to Heaven someday. Randy encourages kids to live “in Light of Heaven.”
In this amazing true story, Colton Burpo shares his comforting and exciting experience in heaven, where he saw Jesus, lost loved ones, and other miracles.
This true and heartfelt story is told through the eyes of a two-year-old little girl, named Ally. Ally's baby sister, Kate, lived a short yet very meaningful and spiritual life. Ally learns that even though Katie isn't here with her anymore, they'll always be sisters. This book is a moving tribute to the power of love and the ability one family had to move through the tears and honor the 13 days that their baby lived.
Includes both English and Spanish translations. A book for siblings of NICU babies. Shares fears, worries of young children. Come with Katie and visit her new brother. She couldn't wait until that special day when he would come home. She already liked Christopher, and she just knew he was going to like her, too. Updated 2021.
For siblings of a baby who has died. Grandma took hold of my hand. She leaned over and picked something up off the ground. "See this little bud?" she asked. "It was supposed to keep growing and turn into a flower. But it didn't, and no one knows why. Most little buds become flowers, but some don't. This one died. It will never be a flower now." I held the little bud in my hand. "Just like our baby," I said. Grandma explains you're not to blame and we don't always have answers. Author: Marilyn Gryte
A coloring book for families whose new baby has problems. For small siblings whose new baby may or may not come home. Starts when child is excited about having the new baby, parents finding out there is a serious problem and visiting the NICU. Author: Gail J. Klayman, M.Ed. C.C.L.S.
