A Seat at the Table for Siblings

The excerpt below is from our 2022 webinar “Strengths and Challenges for Siblings of Individuals with Duchenne” with guest speaker Emily Holl. Emily Holl is the Director of the Sibling Support Project. Click here to listen to the full episode.

A Seat at the Table for Siblings

Siblings definitely play a unique and very important role in their families and I want to start by just talking a little bit about why it’s so important to support siblings. Later, I want to talk about the specific themes that come up when we think about unique concerns and unique opportunities.

We want to make sure that people understand that when we talk about family support, family-centered services, we are talking about more than parents, right? Because when we think about the traditional definition of family in those family supports that exist all across our fields, we’re really probably talking mostly about parent support.

And so a big part of my work is to remind people of the important role that siblings play in their families and to help them understand 1) why it’s important to support siblings themselves and 2) the benefits of doing so – not just for siblings – but really for the whole family who has the diagnosis.

Sibling Experiences Parallel Parents’ Experiences

So the first thing I want to share today – and we know this from the research – is that sibling experiences really do parallel parents’ experiences. Pretty much anything that we can say about being the parent of a child with Duchenne, we can put ditto marks on for siblings. Siblings share many – if not most – of the same issues as their parents, as well as some unique issues of their own.

But if we look at the services and supports that are available for parents compared to the services and supports that are available for siblings, it’s pretty easy to see who’s getting the short end of the stick. So that’s the first point I want to share.

Sibling Issues Are Lifespan Issues

The second point I want to make is that sibling issues are lifespan issues. This is to say that siblings issues – and needs – really do evolve and change over the course of the individual’s lifespan and also the family’s.

Even though Duchenne is a life limiting illness and that path and that journey is shorter when we’re talking about lifespan, it’s really important to acknowledge that siblings will evolve and change during different stages of disease, just like the individual with Duchenne and just like the rest of the family.

Sibling needs ebb and flow. And it’s important to recognize that the sibling is growing right there alongside the rest of the family.

Siblings Spend a Large Quantity of Time Together

Point number three is that siblings spend a large quantity of time together.

When we look at the research, we see that over the course of the lifespan – and this is true of any sibling, not just siblings of people with Duchenne or disabilities – siblings spend a great deal of time. together. And this is particularly true at the earliest stages of life.

So think about what happens at those younger ages – like maybe up to 18 years old. It totally makes sense, right? We’re probably living under the same roof. Maybe we’re going to the same school. Maybe we’re going to the same church or synagogue. We are part of the same community and we have a high level of involvement with our siblings.

So we really ask parents and families to think about the support siblings need during this time when family is a really big piece of your world and your universe. Programs like SIB shops are really, really timely interventions because they are available to siblings at a time when family is really their whole life.

Siblings Spend a Lot of Quality Time Together

And number four – last but not least – is that siblings spend a lot of quality time together. No other child is going to have as big an impact on a child’s social development as their sibling – even including classmates in an inclusive classroom.

Our siblings are 24/7 social role models. So we have a big impact on one another – especially if they have Duchenne.

So I think that these four reasons make a pretty compelling argument as to why we really should be thinking about siblings when we think about the definition of family support. We need to make sure that siblings are included in that definition and that they are invited to have a seat at the table.

They really, really deserve it.