September 2018
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Sibs of Kids with Special Needs

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Parenting one child is hard enough and parenting multiple children increases the stress level - even more so when one child has a developmental disability. There are dedicated groups and resources to support parents of differently abled children, but typical siblings (Sibs) may get lost in the chaos of their sibling’s immediate, and sometimes severe, needs.

This article is a roadmap of basic preventative strategies with an outline of the Sibs’ most common needs. A debt of gratitude to the thoughtful insights of participants and facilitators of Shames JCC on the Hudson’s Sib Groups, Alyson Krueger’s “Advice from Siblings of Special-Needs Kids” (Child Mind Institute) and to Don Meyer’s Sibling Support Project.

Caretaking

Challenge: Sibs want parents to understand that they’re their own individuals, not just caretakers for their sibling. They are often prevented from engaging in recreational programs, social opportunities, or after-school jobs, in order to care for their developmentally disabled sibling. An extreme example is the student informed her education would only be funded if it prepared her to become her sibling’s primary caretaker.

Support: Sibs love their siblings and want to help them, but also need to have time for their own interests. Parents might want to try offering reasonable payment, or increased privileges in exchange for sibling care. One teen, who cares for her sibling three hours every weekday, suggested $10 per day as reasonable compensation. This type of remuneration may help foster the caregiver’s self-esteem as well as increase her independence.

Over Achieving

Challenge: Sibs sometimes feel they’re “the better child” as they are more successful academically and better integrated into mainstream activities. Healthy self-esteem is good, but comparison is a dangerous foundation. Many report unconscious, sometimes unhealthy, compulsions to excel academically, athletically and socially, under the shadow of knowing that with all their advantages, they have “no excuse” not to succeed.

Support: Sibs yearn to be seen for their own unique, emerging personality. They may need verbal acknowledgment that their value is not based on their achievements. Encourage them to try new things and to pursue their interests. It would go a long way to remind them that you only want them to be themselves.

Shame

Challenge: Children and especially teenagers, attach high value on peer acceptance. Differences feel glaring and a sibling with special needs can be a source of embarrassment. Compounding this discomfort is the message that being ashamed is not a “nice” feeling, engendering guilt for feeling that way.

Support: Encourage your child to talk to you and/or a certified counselor. Feelings cannot be wrong, but can cause damage when repressed. Support your child’s desire for alone time with friends. Reach out to educators to create an environment of inclusion and a model for celebrating difference. Be proactive by including your children in advocacy for the differently abled. Help your child navigate moments of societal intolerance, rehearsing how to handle these inevitable interactions.

Stress

Challenge: Sibs are acutely aware of family stress and may be reluctant to create additional pressure by asking for “extras” such as spending money, rides, or social time. They tend to be very attuned to their sibling’s feelings as well. One Sib reported feeling “unescapable sadness” when his sister cried and such anxiety when she had tantrums that he’d, “run into [her] room and take away the scissors so she couldn’t harm herself or others.” Ironically, his anxiety worsened when his sister attended a treatment across the country because he “felt that [he] was in zero control of what was happening.”

Support: Sibs need to develop their own coping strategies and need a supportive parental and social network. Stay vigilant that caretaking doesn’t always fall on their shoulders, and offer them occasional time to disengage from family life with outside activities, or tuning out with headphones and personal space.

Equal Time

Challenge: Although the array of special needs is often more immediate and of a higher stake, Sibs wish parents would fulfill requests in a more even handed way, for example, like the order they were received.

Support: Create cushioning for these inevitable moments by carving out special time to connect with your developmentally typical child; a weekly “play date”, monthly outing, or even five minutes each night at bedtime. Maximize this time by letting your child set the topics for discussion and/or the activity.

Fairness

Challenge: Sibs notice differences in disciplinary practices and don’t care about the reasons. One stated, “I wish my parents wouldn’t always give in to [my sibling] - they’re just scared of his tantrums!” This lack of parity in parenting conveys the message that the differently abled child is incapable of learning, or taking any responsibility for his actions. One sibling lamented that her sister didn’t respect her need for “quiet” or personal space. Another added, “I want my brother to annoy me less … I [ask] him to stop and he doesn’t and then we have a fight.”

Support: It is tempting to avoid conflict and let discipline slide. When possible, take a step back to assess whether you are harder on your typical child. Positive discipline is not punitive, or random, but rather an unemotional implementation of immediate and appropriate consequences for the purposes of fostering growth. As much as developmentally appropriate, create clear behavioral expectations for the family, perhaps within family meetings, where participants can feel involved and heard.

The Future

Challenge: A major and on-going worry for Sibs is the future, especially about inheriting the role of caretaker. One shared that her anxiety increases when her mother worries aloud about her sibling’s fate but “then she doesn’t even let my sister brush her own teeth!”

Support: Allow your children to chart their own future course. They will always be connected to their sibling, but provide them with some options as to the level of care they will be expected to take on. Perhaps have them help their sibling master activities of daily living as a way to have them be proactively involved and to demonstrate their sibling’s ability for self-care.

Even with all these challenges, there are so many positive aspects of growing up alongside a sibling with special needs. With familial and societal support, Sibs reportedly demonstrate heightened compassion, empathy, patience, kindness, advocacy and fierce loyalty. Whenever possible, provide opportunities for respite and independence for your typical child, stress-free fun for the siblings to bond, and make time for the entire family to enjoy each other’s company. You’ll be on the right track.

Jennifer Convissor is a Licensed Clinical Social Worker at the Shames Jewish Community Center on the Hudson in Tarrytown where she was instrumental in designing the Shames Sibs Program.

The Shames Jewish Community Center on the Hudson offers all faiths and backgrounds programs ranging from early childhood to adult learning including activities for families with special needs. In addition, its 75,000 square foot campus includes state of the art fitness and aquatics centers, a full court gymnasium, sports and swimming leagues and more than100 exercise classes. shamesjcc.org.

Posted 12:00 am, September 28, 2018
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