Hey, Mom and Dad, look at me!

Eight things siblings of children with disabilities want parents and caregivers to know

Audience listening to panel discussion

Parents asked questions and listened to what panelists had to say about having a sibling with a disability. Credit: Anna Miller

January 22, 2015

Sibling rivalry is a fact of life for families with more than one child. But what if one child has a disability and the other one doesn’t? How does that affect the relationship between the siblings, and between the parents and their child without a disability?

A panel discussion addressed this topic as part of Perkins’ monthly information sessions for parents of current and prospective students. All five panelists – four adults and one teen – had at least one brother or sister with a disability. This is what they wanted parents and caregivers to know:

  1. They have feelings of frustration and guilt. Guilt that their sibling and family are different from others, and guilty for feeling that way. Frustration that their brother or sister makes it difficult to have friends over or go on vacation, and then guilt when that sibling needs extensive treatment. Guilt for moving away from their families as adults and frustration with parents who only visit with the sibling in tow. They want their parents to understand that those feelings are normal.
  2. They know it’s not easy for their parents either. They get that only one parent at a time may be able to attend their concerts and sport activities. They understand, particularly as they get older, that there won’t be equity in how they are treated – the sibling with the disability has more needs. And they realize how difficult this is for their parents, which is why they want their parents to occasionally hire a caregiver and take time for themselves.
  3. Therapy can’t start soon enough. For the non-disabled sibling, that is. They have a lot to process, from feeling guilty about their sibling’s disability to feeling neglected by their parents. An outside person can help them sort out how they feel and give them a safe place to express frustration, anger and other negative emotions, in an age-appropriate way. And for teens who emphatically state that they won’t talk to a therapist, take them anyway: chances are that, behind closed doors, they will actually open up.
  4. Communication is necessary. When nothing is being said, children often imagine the worst. For example, if a brother or sister is continually hospitalized, the typical child may worry that the sibling will die. Parents can, and should, address this in an age-appropriate way so the child knows what to expect, even if death is a possible outcome. Children sense when something is wrong and would rather have parents acknowledge it than ignore it.
  5. Give them a sense of control when possible. They may not be able to control the impact their sibling’s situation has on their life, but giving them the power to make choices or decisions in other areas of life can ease the way. Including the child in decisions – “Do you want me or daddy to come see your concert, while the other stays home to take care of your brother?” – gives them choices and can help them feel involved in the care of the family.
  6. Connecting with others in the same situation is important. There’s only so much understanding that friends who don’t have a sibling with a disability can give. After all, they don’t live it every day. But connecting with others in the same situation – whether through groups, email or even by reading books – can make a child feel not so alone. At any age, it can be a relief to feel understood without having to say a word, and these connections do that.
  7. They expect to take responsibility for their siblings with disabilities in the future. Children understand when a sibling needs extra care. They see how much time and effort their parents put in and realize that it’s not going to end once the parents are gone. So whether their parents assure them that they will never be responsible for their sibling’s care or don’t discuss it at all, it’s still on the minds of the non-disabled children. From handling their sibling’s finances and the logistics of an out-of-home placement to building an in-law suite in their own home, they are already planning to take over for their parents.
  8. At the end of the day, they love their siblings. They may feel frustrated by their siblings and guilty about those feelings, but who doesn’t feel that way about any sibling at various times? When all is said and done, these children fiercely love and protect their brothers and sisters with disabilities. And that’s something every parent wants to hear.

For more information and resources, check out the Sibling Support Project »

Special thanks to panelists Erin LeCount, Jill Buchanan, Jennifer Connelly, Kathryn Malnight and Dan Moskowitz for their time and insight.

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