Thinking About Siblings

Emily Rubinby: Emily Rubin

Ever wonder what life is like for siblings of kids with serious mental health needs? I spend an inordinate amount of time thinking about this, because I’m running a research study to support siblings of youth admitted for psychiatric hospitalization. It’s called the Sibling Support Demonstration Project, and it’s underway at Cambridge Hospital (MA), where close to 300 siblings and parents have participated.

Mental health disabilities are tricky. For one thing, they tend to be invisible. This means that outside observers usually have an incomplete understanding of situations involving a child’s inappropriate behavior. With a visible disability, such as a child in a wheelchair, it’s immediately clear to outside observers that the child has a mobility impairment and relies on a wheelchair for transportation.

Many of the siblings in my research project are struggling not only with the challenging and often unsafe behaviors that have landed their brother/sister in a psychiatric ward, but they are struggling with the insidious stigma of mental illness – which they often internalize, as if the stigma of our external culture isn’t punitive enough – as well as the trauma of the psychiatric hospitalization itself.

Siblings

Here are some examples of what these siblings are dealing with:
ŸŸ- Unpredictable behavior and rapidly shifting moods of the brother/sister, and the fact that the brother/sister is often held to a different set of expectations and rules of discipline which may feel like a double standard.
– Physical and verbal aggression from the brother/sister, which can lead to generalized anxiety, sleep problems, impaired concentration in school and many other issues.
– Embarrassment when the brother/sister is unable to control his/her behavior at home, at school and in the community, which can translate into the siblings’ reluctance to invite friends over, be seen in public together and to participate in extracurricular activities.
– Assuming adult responsibilities before they are developmentally ready to do so. Taking on the role of the “little mother” or “little father” in the family (otherwise known as parentification) can be the siblings’ way of managing stress, as well as an indicator that siblings are missing out on their childhood.
– Keeping too many personal problems to themselves because they see how emotionally taxed their parents or guardians are and don’t want to add to the perceived burden.
– A cycle of protectiveness/avoidance, when siblings sense the vulnerability of the brother/sister which leads to over-protectiveness, and then withdraw when the brother/sister’s behaviors become hurtful.

I often remind the parents of these sibs that a mental health disability impacts every member of the family. It isn’t fair for anyone – not for the affected child, not for the parents and certainly not for the siblings.

So the next time you see a child who you perceive to be “acting strangely,” you might wonder: is there a sibling in this family who needs extra support?

Emily Rubin is Director of Sibling Support at the Eunice Kennedy Shriver Center of UMass Medical School, as well as the President of the Massachusetts Sibling Support Network. For more information about the Sibling Support Demonstration Project, go to page 8 of the most recent Shriver Center newsletter.

Read our last post: Who will save my child?

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10 Comments

Filed under Disabilities rights, perceptions of disability

10 responses to “Thinking About Siblings

  1. I’m really excited to hear about this work you’re doing. My friend/co-author and I write about and work with people who live with/love/care for people suffering depression. Few realize just how damaging mental illness can be to those who live in close quarters with it. Thank you for your work to support children who live with this painful circumstance.

  2. Emily

    And thank you for the work that you are doing as well! It takes a village, as they say.

  3. Kah

    I was only 12 when my oldest sister was taken away by an ambulance after her first suicide attempt. I wish we had these support groups then. She died at the age of 46 (the age I am now) after many years of depression and substance abuse. Even as an adult, I didn’t know what to do or how to help or whether to just runaway and save myself. I think siblings are definitely overlooked. If I had had more support, maybe I could have been a better support to her.

    • emily

      So sorry to hear about all that your sister, you, and your family went through. I wish sibling services had been available to you back then. It’s a hard road to go alone. Thanks for sharing your story.

  4. Samantha

    my brother is autistic, i have felt that way growing up and didnt receive help. Im 25 years old my brother is 17, my parents are taking care of him and when they are no longer able too, i will be taking care of him. im trying to find sibling support groups close to the new hampshire border, any help?

  5. Emily, this is Lee, I used to work with Matt. A very dear friend of mine is taking care of her 60-year-old adult brother who is severely mentally disabled. It’s been an incredible struggle all her life, but since her parents several years ago, she’s taken on the full-time caregiver. I watch she and her husband in amazement on how they handle things day to day, but I have seen her change throughout this process.

    If you come across any material or groups that support siblings taking care of adult siblings with mental health needs, please share.

    Thanks! I always keep your family close in my thoughts and prayers.

    • Emily

      Great to hear from you, Lee! Your friend is lucky to have you in her life. A good resource for your friend would be NAMI’s Family-to-Family Education Program, geared toward family members of individuals diagnosed with mental illness. You can find more info at http://www.nami.org. Your friend might also be interested in adult sibling social groups hosted by the Mass Sibling Support Network, which are informal gatherings for siblings of adults with a range of disabilities. You can get more info at http://www.masiblingsupport.org. I will keep your friend in mind if I hear of other resources.
      Take good care,
      Emily

  6. Support group and with the local public schools to offer an open Sibling Group. After we had the opportunity to host an incredible Sibshops’ conference with Don Meyer in April (sponsored by Combined Jewish Philanthropies, co-hosted by JF&CS of Greater Boston and the MSSN), we are gearing up to offer two Sibling Support groups this Fall. We aim to collaborate with Gateways: Access to Jewish Education and Yachad Boston to offer an ongoing Jewish Sibling Support Group, and also to partner with three local public schools to offer an open Sibling Support Group. The Sibling is the longest lasting relationship in a family unit and we believe that offering healthy and supportive resources to kids with brothers and sisters with special needs will lead to healthy and supportive relationships throughout a lifetime.

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