6 Ways to Support Siblings of Children with Disabilities

One of the most painful aspects of Bethany Grace’s extreme care needs as a baby was watching how it was negatively impacting Josiah. It broke my heart to see him watching us attending to her feeding tube, oxygen, and monitors while he stood by. At age three, he desperately needed more attention. We gave him all the hugs and time we could. But the reality was, we were literally just trying to keep his sister alive.

Giving siblings all the time and attention that they need can be very challenging when caring for a child with medical, developmental, or mental health special needs and disabilities. I can only imagine how much more difficult this becomes when you have more than two children.

Research shows that siblings are typically negatively impacted but that there is great room for the experience to have lasting positive effects. With support, many siblings learn how to cope and develop a more mature understanding and healthy emotional responses, even becoming more empathic and accepting of others.

6 Ways to Support Siblings of a Brother or Sister with Disabilities

These ways to support siblings’ emotional health build upon one another.

1. Over-Shower Them with Attention and Praise

When Josiah was little, we found that we had to be intentional and look for any chance we could give him some one-on-one love and attention. Of course these opportunities arose more when Bethany Grace was medically stable.

Tickle time always helped him reset his emotions and laugh. This was one of his favorite things to do along with wrestling with his dad.

We also tried to praise him as much as we could. “Good job cleaning up your toys!” or “Thank you for helping.”

His dad and I each began to plan special dates with him like taking him to the movies or the park.

Planning special dates with just each sibling can help our children feel special and loved.

I’m not trying to say that spending this extra time with our other children is easy. In the midst of caring for all of our other children’s needs, it can be challenging to find this moments. We also try to plan these special times when there is greater chance that we won’t have to cancel due to Bethany Grace’s needs.

2. Recognize Behaviors

Anger, jealousy, confusion, sadness, low self-esteem, loneliness, and resentment are a few of the painful emotions that siblings can experience. It only makes sense that they might exhibit negative or inappropriate behaviors to gain our attention and feel a sense of control.

When we brought Bethany Grace home from the NICU, Josiah was so angry towards his sister and me I didn’t know how to help him. It’s hard enough on a child when their parents bring home their younger brother or sister.

But when their new sibling has special needs, it can seem like they’re forgotten despite our valiant efforts.

Knowing how to respond to a sibling’s negative behaviors can be very tricky. We don’t want to reinforce the way they are attempting to gain our attention. But it’s also important to keep in mind why they are acting the way they are. That’s why showering them with praise and attention any chance we can is so important.

3. Acknowledge the Facts and Unfairness

When we finally sat down with Josiah and fully validated his thoughts and emotions about his sister and us, it helped him tremendously. I said, “It’s not fair is it? Your sister needs extra time and attention to help her stay healthy and growing. I’m very sorry about this. We love you both the same.”

Our guilt can keep us from having this conversation.

It’s critical that they have a space to process their thoughts and emotions. In order to help Josiah, we wrote this book together.

You can also help your child process the emotions, joys, and challenges of having a sibling with disabilities with this Free eBook

4. Sign Up For a Sibling Support Group or Camp

When we attended the conference for Bethany Grace’s syndrome, 5p Minus, one of the best programs was for siblings. This experience greatly helped Josiah. Just from spending a little bit of time with other siblings he felt validated and understood. “I’m not the only one who has a sister like Beth! Other kids don’t like it when they get pinched.”

Just like it’s cathartic when we get to spend time with other parents who get it, when siblings know other kids are going through something similar and are experiencing the same thoughts and emotions, they feel validated. Children’s hospitals often have special support programs for siblings.

Disability family camps usually have special programming for siblings.

You might find a program on this list of camps for siblings, families, and children with disabilities. Adam’s Sibling Camp is another site to check out.

5. Support Development of Coping Skills and Healthy Emotional Growth

Oftentimes, siblings don’t want to burden their parents. They may try to deal with their problems and emotions on their own. They began to grow up faster than what is typical developmentally. They may stuff emotions, especially anger.

Some signs that they’re coping in this way include:

• Isolating
• Not asking for help
• Answering, “It’s okay” when you offer help
• Taking on more responsibilities
• Becoming depressed or anxious

Helping our children develop healthy ways to cope and make meaning of their emotions can change their outlook and feelings towards their sibling and other people with disabilities.

Some ways to help include:

• Keeping a structured schedule for them as much as possible
• Helping them talk about their feelings
• Saying, “It makes sense that you’re feeling this way. What can I do to help?”
• Insisting on helping them even when they refuse help
• Saying, “You’re not burdening me.”

• Finding ways to include them in helping their sibling but not too often or with too much responsibility

6. Find a Professional Counselor or Play Therapist

Sometimes it can be very helpful and necessary to take our children to a therapist. This doesn’t say anything about us as parents or that we’ve failed. Quite the opposite. By taking them for professional counseling, we’re supporting them any way we can.

At some point, knowing how to help our children be successful may be beyond our knowledge and abilities. It’s important to seek help as soon as possible, especially if your child is showing signs of depression, anxiety, or trauma.

Therapy can help our children process their experience and emotions, develop coping skills, and learn more appropriate behaviors to gain attention.

Your child may need to process trauma if their sibling has severe medical complications or emergencies.

Remember, all we can do is our best.

What have you found helps your child?

Make sure to share your successes with us in the comments!

Blessings on your family,

Kristin

 *The contents of this article are intended for informational purposes only and not a substitute for seeking professional mental health or medical advice.

Kristin Faith Evans, MA, MS, LMSW

Kristin is an author, a speaker, a mental health therapist, and a special needs mom. Her greatest passion is walking with others on their journey to deeper faith and mental health wholeness. As a Licensed Masters Social Worker and with her Masters in Christian Spiritual Formation, she has served in youth, camping, and retreat ministries and is experienced in Christian counseling, couples and family therapy, substance abuse treatment, and crisis counseling. Kristin lives with her husband, Todd, and their two children in the Nashville, TN area. When she is not enjoying life with her family, writing or working with clients, you can find Kristin training for triathlons, reading, or simply being out in nature. Visit her author website at www.KristinFaithEvans.com

References

Dempsey. Emotional and Behavioral Adjustment in Typically Developing Siblings of Children with Autism Spectrum Disorders. Journal of autism and developmental disorders. 2011;42(7):1-10. doi:info:doi/

Giallo. The emotional and behavioural functioning of siblings of children with special health care needs across childhood. Research in developmental disabilities. 2014;35(4):814-825. doi:info:doi/

Hua Sim W, Frydenberg E. Beyond Coping: Stress-Related Growth Among Siblings of Children with Special Needs. Children Australia. 2011;36(3):153-163. doi:10.1375/jcas.36.3.153

Hua Sim, W., & Frydenberg, E. (2011). Beyond coping: Stress-related growth among siblings of children with special needs. Children Australia, 36(3), 153-163. doi:https://doi.org/10.1375/jcas.36.3.153

Moyson. The quality of life of siblings of children with autism spectrum disorder.(Report). Exceptional children. 2011;78(1). doi:info:doi/

Rebecca Giallo, Rachel Roberts, Eric Emerson, Catherine Wood, Susana Gavidia-Payne,
The emotional and behavioural functioning of siblings of children with special health care needs across childhood,
Research in Developmental Disabilities, Volume 35, Issue 4, 2014, 814-825, ISSN 0891-4222,
https://doi.org/10.1016/j.ridd.2014.01.017.

Strohm. Too important to ignore: siblings of children with special needs. Australian e-journal for the advancement of mental health. 2008;7(2):78-83. doi:info:doi/

Tsao. Supporting Siblings of Children with Autism Spectrum Disorders. Early childhood education journal. 2012;40(1):47-54. doi:info:doi/

Williams, P. D., Piamjariyakul, U., Graff, C., Stanton, A., Guthrie, A. C., Hafeman, C., & Willisams, A. R. (2010). Developmental Disabilities: Effects on Well Siblings. Issues in Comprehensive Pediatric Nursing, 33(1), 39-55.