As Purim approaches, thousands of Israeli children and families grapple with poverty
“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.
Seek out respite opportunities, and do not feel guilty for taking advantage of them, along with other members of the family. Your spouse and your typically developing children may occasionally need to experience quality family time together without the distractions or disruptions that may ensue in the company of a child with a disability. Do not feel guilty over having family time without this child. You are not excluding him by doing so.
Make sure to give each of your typically developing children an opportunity to have one-on-one time with you as often as you realistically can. This will reassure them that their well being as your child is just as important to you. This does not have to be a formal occasion. It could be as simple and natural as accompanying you on a trip to the store, or driving them to a friend’s house, as long as it provides the two of you with an opportunity to talk in a meaningful and private way.
Do not commit your children to responsibilities for their sibling with a disability without discussing it with them first. Try to minimize the impact of their sibling’s disability on their normal everyday lives.
Have expectations for your typically developing children that are appropriate for their age, temperament and level of understanding. While they may not have a disability, they are still children. Expecting them to always be understanding of their sibling’s behavior, or always be the one to give in after a fight, is unfair and unrealistic. Give them permission to act their ages.
Set realistic expectations for the behavior of your child with a disability, such as giving them responsibility for minor household chores according to their ability, and make it clear that you expect him to meet those expectations. That will minimize resentment among his siblings.
Help your typically developing children find peers who can relate to what they are going through. Participation in a siblings support group can be particularly beneficial.
Address the concerns of your typically developing children about the future. Inform them of any major decisions involving your child with a disability, including any plans for a residential placement, or to send the child to a summer camp for special needs children. Listen to their suggestions and feelings, but make it clear that you as the parent will make the final decisions with the best interests of the whole family in mind.
Growing up in a family with a sibling who has a disability clearly presents many challenges to a typically developing child. Yet those children who can rise to that challenge often emerge with extraordinary qualities. The lessons they learn from that experience while growing up will enhance their sensitivity to the feelings of others, and give them a healthier perspective on what is truly important. This will surely enrich their outlook and relationships with others throughout their adult lives.
Tzivy Ross Reiter, LCSW, has written extensively about issues related to mental health and developmental disabilities. She is Assistant Director at Ohel Bais Ezra, whose services include Residential, Day Habilitation, Service Coordination, Residential Habilitation, Recreation and Respite Programs for Children and Adults with Disabilities. For more information, on Ohel Bais Ezra, please call 718-851-6300 or visit www.ohelfamily.org.
About the Author: Tzivy Ross Reiter, LCSW-R, is a Director at Ohel Bais Ezra and an advisor to Building Blocks Magazine. She has written extensively about issues related to developmental disabilities and mental health. She is also the author of “Briefcases & Baby Bottles: The Working Mother’s Guide to Nurturing a Jewish Home; Feldheim, 2012.”
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