Living with Siblings With Disabilities in Special Needs Families

“Don’t Forget about Me!”

I have often mentioned the social-emotional journey toward the acceptance of a learning disability (LD) and shared information and resources that were intended to help adults work though the complex emotions that go hand in hand with having a child who struggles with learning. The feedback I received (thank you to all who wrote to share your first-hand experiences and to offer ideas for future discussion) reminded me how important it is to also recognize the experience of other family members, particularly siblings, whose lives are affected, often in dramatic ways, by living with an individual with LD.

Seeing the Forest Through the Trees

Raising children is a wonderful journey that has rewards and challenges every step along the way. Parenting children with special needs (whether they have health issues, problems with learning and behavior, and even exceptional abilities) is especially labor intensive. The attention and energy expended to meet these special needs and keep a healthy balance between home and school can be all-consuming and at times exhausting. As a consequence of this day-in and day-out juggling act, the feelings and needs of non-disabled siblings might be unintentionally overlooked.

Video: A Family of Brothers Four brothers, two with learning disabilities, talk about how they support each other. Watch now > Made possible by a grant from the Oak Foundation.

Being on “LD alert” 24/7 can be very tiring, and parental stress and fatigue alone takes a toll on siblings who continually have to figure out how they fit into the flow of family activity and emotions and how their needs for attention, approval and assistance can be met. With parents needing to devote additional time and resources to helping one child, the overall family dynamic is easily thrown off balance.

Siblings Have Feelings, Too

What could siblings be thinking and feeling as they watch their brother or sister struggle with learning? If they could find the right words, they might touch upon the very same emotions that were described by a psychologist in the 1940s who proposed a model of understanding human behavior. This ‘hierarchy of needs’ can readily be used to understand some of the emotions that need to be appreciated, understood and addressed by parents and other adults in order to help siblings cope with feelings of anger, jealousy, worry, guilt, and embarrassment that comprise their personal “baggage” as siblings and family members.

Physiology (having to do with comfort and the physical body)

• “How come he gets more hugs than I do? And for things that are expected of everyone, like finishing homework!”

Safety (dealing with the need to be protected from harm)

• “Why can’t he make his own sandwich? He just needs to be careful with the bread knife.

• "What’s the big deal about him riding his bike to school?”

Belongingness and love (feeling attachment to others)

• “It seems like she’s always the first one to get attention.”

• “I’m always doing things for her; when was the last time she did something for me?”

Esteem (having your thoughts and actions valued by others)

• “If you ask me, I’d tell you that you need to back off a little; you’re doing things for him that he should be doing for himself.”

• “What about my report card? Pretty good, huh?”

Knowledge and understanding (seeking information)

• “When will her LD go away?”

• “Is she ever going to be able to do her work on her own?”

Aesthetic (deriving pleasure and triggering emotion)

• “He’s got a great laugh, even though his sense of humor is weird.”

• “I wish I knew how to really help him when he’s feeling down on himself.”

Self-actualization (having “peak experiences” that provide self-fulfillment)

• “I know we’re very different, but we’ll always be there to support each other.”

• “They said he couldn’t learn how to play guitar, and I taught him!”

Transcendence (connecting to something beyond yourself to help others)

• “Everyone deserves to be appreciated for who they are and not just what they can do.”

• “I know how important it is to spend time with him and his friends; they really look up to me and know that I will treat them with respect (even though they can be annoying and immature at times).”

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