ONCE UPON A GENE - EPISODE 013 - Sibling Support

IMG_13071.jpg

On the topic of siblings again this week, we'll be talking about the sibling perspective and the support available with Emily Holl, the Director of the Sibling Support Project. Emily is a social worker, writer, trainer, and sibling. Over the past 16 years, she has provided workshops, training, and groups for siblings, families, and individuals with disabilities. She has presented and written extensively on sibling issues, has conducted and published sibling research, and has facilitated Sibshops for young brothers and sisters of children with disabilities. 

EPISODE HIGHLIGHTS

Tell us about how the Universe brought you to the world of sibling support.

The short answer is that I myself am a sibling and I have an older brother, Peter, who has an intellectual disability. He really is at the center of many personal and professional decisions and I'm really grateful to him because if it weren't for him, I wouldn't be doing this work that I love so much. I wouldn't have met so many other incredible siblings who have a lot of insight and wisdom to share. 

Did you join a sib shop when you were young?

I travel a lot and have the pleasure of meeting so many other adult siblings. I echo their same sentiment that I wish there were Sibshops when I was a kid. I didn't discover Sibshops until much later when I was a young-ish professional working in the disability field. A colleague of mine found Sibshop facilitator training by Don Myer and thought it would be a good idea for us to attend. I attended that training and it really changed my life because I not only realized there's a whole organization dedicated to supporting brothers and sisters like myself, but through that training I was able to understand my own sibling experience in a much broader context. I recognized that my experience shared so many elements with other brothers and sisters and from that point on it really inspired me to do everything I could to create sibling support for the families we were working with. 

I haven't imagined my child as an adult not knowing what to do if they had to take over. 

Especially as parents with young children, it can be daunting to consider the future and consider a time in the family's life when we as parents are no longer able to care for our children in the way we traditionally have. For the best reasons and with the best intentions, parents often don't share information with their typically developing children. We always encourage parents, even of young children, to keep that door of communication open so that when the time does come to talk about future planning, it's not uncharted territory, not a taboo subject undiscussed by the family. Even if parents don't have answers, communication can go a really long way. They may not want to burden typical developing children with thoughts of future caregiving, but siblings are already thinking about the future. Making that an okay topic to discuss is an important way for parents to support siblings.

What do you do now with Sibshops?

Don Myer retired and there was a national search for this position and I was the very lucky person honored to be offered the position. We moved from New York City to Seattle where the Sibling Support Project was founded in 1990. There's a long history of self and parent advocacy in the United States and we have them to thank for the creation of the disability services and supports that exist today and for many of the laws that reinforce them. As it turns out, there's also a lesser known history of sibling advocacy and sibling support and that really starts with Don Myer who started the Sibling Support Project. Don created a Sibshop which is central to the work we do today and to the support that thousands of siblings receive across the country and around the world. Fundamental to the Sibshop model is providing information and support to young brothers and sisters in a highly recreational and fun setting. We travel the country and train organizations, children's hospitals, disability service providers, parks and rec departments, schools and any other place you may find children with brothers and sisters with disabilities. We train organizations on how to support young kids in a way that's meaningful, fun and really speaks to kids.

How do organizations and programs get in touch with you to organize a Sibshop?

We're always grateful when organizations find us because they notice siblings are left out and they want to change that. A lot of times, people research the Sibshop model and will get in touch with us to learn more about it or they have seen a Sibshop at another organization and want to recreate that for their organization.

How long and how often are Sibshops?

There's a lot of flexibility in the Sibshop model so organizations can offer Sibshops on varying schedules. What we ask is that people who are trained and who are certified and offer something called a Sibshop really ensure the program upholds our best practices, what we call the Sibshop Standards of Practice. These are our best practices to ensure a parent sending a child to something called a Sibshop is sending them to a program that is aligned with our model and grounded in our mission and values.

What can we do as parents to make sure we're balancing the attention we're giving to our children?

Make sure you're providing siblings with age-appropriate and accurate information from a variety of sources. Particularly with school-age children, they need to have information about the disability to explain it to other kids who may not ask questions in the nicest way. For younger children, providing information should be ongoing as their understanding of the world becomes more sophisticated. Leave an open door for children to ask questions. Provide siblings with opportunities to meet other siblings-  Sibshops is a great way to do that. There are other agencies that host walks and picnics and that's also a great opportunity to carve out time for siblings to meet each other. Beyond open communication and the principles of active listening, allow siblings to express the good and the not-so-good parts of having a sibling with a disability and support them in saying that out loud. Set aside special time with typically developing children. A little goes a long way.

How old do kids need to be to attend Sibshops?

Typically they're for kids ages 8-13. There are Sibshops around the country that are changing that a little bit to include teenagers, so they're modifying their programming to include slightly older kids or even slightly younger.

Have you found that most siblings grow up to be in a compassionate field?

What we know from research is that siblings go into helping professions much of the time. We know typically vocation is one of the perks that siblings identify, based on the experience with their brothers and sisters, that they felt really drawn to a helping profession that gives them a lot of gratification. Siblings who don't go into helping professions often give back another way. 

CONNECT WITH EMILY

Email: emilyholl@siblingsupport.org

LINKS AND RESOURCES MENTIONED

Sibshops at Kindering

Thicker Than Water: Essays by Adult Siblings of People with Disabilities

The Sibling Survival Guide: Indispensable Information for Brothers and Sisters of Adults With Disabilities

Sibling Support Project

Start a Sibshop

Sibshop Standards of Practice

Sibshop Directory

How to Talk So Kids Will Listen & Listen So Kids Will Talk

TUNE INTO THE ONCE UPON A GENE PODCAST

Spotify

Apple Podcasts

Stitcher

Overcast

CONNECT WITH EFFIE PARKS

Website

Twitter

Instagram

Effie Parks