“I feel mad because my brother is always breaking my things.”
“I wish things weren’t always so hard for him.”
“I feel both happy and sad that she is my sister.”
These are the words of “typically developing” siblings of children with disabilities, recounting their feelings about having a child with a disability in their family. While their overall feelings toward their siblings are positive, they do have some mixed and negative emotions due to the extra challenges that come from having a sibling with a disability.
Caring for a child with a disability can become an all-consuming task for a parent. That child winds up getting a disproportionate amount of the available parental time, energy and attention – sometimes at the expense of other children in the family.
The additional stress, responsibilities and behavioral challenges that are inherent in caring for a child with a disability can create special issues for the siblings. Issues which their already overburdened parents may have difficulty identifying and focusing on. Yet despite the challenges, or precisely because of them, often the siblings of a child with disabilities rise to the occasion. They respond to these extraordinary challenges by remaining remarkably well-adjusted, showing greater maturity, empathy and responsibility than could normally be expected from other children their age.
This kind of resilience from siblings is even more common when the parents manage to remain attuned and responsive to the concerns and needs of their typically developing children, despite the stress within the family.
Some of the challenges that siblings of children with disabilities may experience include:
Feelings of jealousy, sadness or resentment over the amount of time and attention given by their parents to their sibling with a disability.
Feelings of embarrassment around their peers or in the community over the behavior of their sibling with a disability.
Feelings of guilt for, at times, resenting their sibling with a disability.
Feeling frustrated or sad over their sibling’s lack of responsiveness or ability to engage in play or family activities.
Dealing with an excessive amount of caregiving responsibility at home.
Experiencing anger or fear due to their sibling’s behavior.
Feeling the need to compensate for their sibling’s limitations.
Feeling anxiety over their sibling’s well-being or safety.
Fears that they may suffer from the same genetic factor, which may be responsible for their sibling’s disability.
Feeling sympathy or concern over their parents’ sadness or distress due to their sibling’s disability.
Fear that in the future they will have to undertake a greater role in caregiving for the sibling with the disability.
How Parents Can Help:
There are many positive actions that parents can take to address these concerns and ensure that their typically developing children’s needs are met, even if they understandably cannot always balance their time and attention equitably. Open communication and a forum to problem-solve, can result in remarkable teamwork and closeness within the family as all members work together to promote the well-being of the child with a disability and the overall family unit.
Here are some specific suggestions:
Set the tone in your family with your own positive attitude toward your child with a disability. Try to manage your own emotions as best you can. If you can remain positive and optimistic about the child with a disability, and accept his limitations, the siblings will do the same. If you are open and proactive in seeking support from others to deal with the challenges of caring for this child, your other children will understand that it is OK for them to do the same.
Help your children to understand, to the extent they can, the challenges the family faces in caring for their sibling with a disability. Keep them informed over time, as their ability to understand matures with age, and the condition and status of their sibling changes. Teach them about their sibling’s specific condition, what to expect, and what is being done to help him. Encourage them to ask their questions and express any fears they may have about how their sibling’s condition may be affecting them. Also, give them advance warning of any significant changes in the care of their sibling, which may further disrupt their schedule, responsibilities or home environment.
Make it clear to your other children that you accept the primary responsibility for caring for your child with a disability, and that, while you want and appreciate their help and participation, theirs remains a supporting role. Parents should periodically review the care giving arrangements and other household duties, to make sure that the burden is not falling excessively upon the other children.
Validate your children’s feelings, both positive and negative, about their sibling with a disability. Encourage them to express those feelings openly, and show them that you take their concerns seriously.
Maintain a safe environment for all your children, especially if your child with a disability exhibits aggressive behaviors towards his siblings. Teach his siblings how to avoid “triggering” an aggressive response, and give them a safe place to which they can retreat, when and if they feel it necessary.