Supporting Siblings with Emily Holl

Mar 27

Rachel and Christie talk with Emily Holl of the Sibling Support Network about the challenges for siblings of kids with disabilities both visible and invisible. Listen in as Emily talks about SibShops, a worldwide program, that offers support to siblings of kids with special needs. Emily also offers tips on how parents can best support these siblings and help them voice their own feelings and fears.

Emily Holl is the Director of the Sibling Support Project. Emily is a social worker, author, trainer, and sibling. Since 2003, she has worked in the disability field and has provided workshops, training, and groups for siblings, families, and individuals with disabilities. Emily has served as a board member of the national Sibling Leadership Network (SLN), and she founded sibsNY, the New York state chapter of the SLN. Emily has written about her own sibling experiences in blogs, magazines and books such as Thicker than Water. Emily was an author and a co-editor of The Sibling Survival Guide: Indispensable Information for Adult Brothers and Sisters of People with Disabilities, published by Woodbine House in 2014

Key Points included:

Sibling Support Project is the first national program dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special health, developmental, and mental health concerns.
They have three closed Facebook groups for siblings of children with special needs, SibTeen Facebook Group
Sib20 Facebook Group, and Adult Sibling Facebook Group (Sibnet)
The commonality of sibling experience despite broad definition of disability - visible like in a wheelchair or invisible like ADHD. All siblings expect that moment when someone asks, What’s wrong with your brother/sister?”
Play is a huge element of SibShops. Emily talks about that many of these kids feel like little parents and its so important for them to play.
Its is powerful to give kids the language to to understand their sibling’s disability just like parents. Parents don’t do this so they don’t burden them. Children are experiencing it so they need to know to so they can process and also explain it to their peers.
Siblings want to be heard and validated - to be able share thoughts, feelings, fears, and goals. Siblings are their each others’ contemporaries and will be there when parents aren’t so they need to be part of discussion of what they will take on.
Emily is a sibling with an intellectual disability and this has been the center of her personal decisions. She has lived it. One of most important things her mother said, “Its not fair.” We do best we can with what we have got.”
Emily recommends that 1) set equal expectations like chores and behavior (ie we don’t hit) and 2) a little goes a long way. Small but consistent moments carved out together like talking, singing or staying up a little later, and 3) ask kids what its like for them.
Emily recommends the book “How to Talk so kids will listen So kids will talk”
SibShops started 40 years ago. Siblings can learn about their siblings disability and talk about ups and downs with others that are walking the same path. There are more than 550 SibShops across the world located at schools, parks and rec centers, early intervention, faith organizations – anyplace that works with kids. Their role is to train them to run SibShops and they can go out and start one. Flexible model centered on 2 principles – 1) shared experience and 2) play. The goals is it to be a place where kids want to come back.
Being a sibling of a child with special needs is not all bad. These kids are incredible and siblings are able to build empathy and many other skills that may direct their lives. “Electric moments,” as Christie describes.