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.
7 Ways to Support Siblings
So, now I want to give people a few tips on how to minimize the challenges of siblings and maximize the good stuff.
#1 Provide siblings with age appropriate information from a variety of resources.
Provide them with written resources for sure. I’m also a big fan of conversations and making sure that siblings have access to professionals.
Remember we talked earlier about how parents have access to professionals? Talk to your providers and find out if they can make a little time to answer questions that the sibling might have. Most professionals, even though they don’t really put this on their job description, are more than happy to chat with the sibs if you just ask. And you definitely have every right to ask.
#2 Provide siblings with the opportunity to meet other siblings of kids with Duchenne.
If you have maybe a fundraiser or a holiday gathering or some kind of initiative or event for your Duchenne community, why not carve out some space for the siblings to get together maybe as a team or to do an activity together?
Or maybe post a play date for your kiddos with Duchenne and then see if there are any siblings that would want to tag along and meet each other as well.
#3 Encourage good communication with typically developing children.
I’m a big fan of active listening, which is really about validation. When we talk about good communication, active listening is one of the best ways that we can really let siblings know that we hear them, that we are validating what they say.
You know, there’s a book called “How to Talk so Kids Will Listen and Listen so Kids Will Talk”. It’s on our resource resource page on our website, siblingssupport.org. It’s like a crash course in active listening, and it’s so great because it talks about the power of nonverbal cues – like making eye contact and making sure you’re at the same eye level with a child who might be talking with you and nodding at appropriate times.
There are all these non-verbal cues we can give to let the kiddo know that we’re listening, but there are also verbal cues, like:
- Oh, that is so _____, tell me more about that.
- Oh, you don’t say!
- Wow, that sounds like it might have been scary fun (or fill in the blank as needed).
These cues really let the child know that we are taking in what they say by the way we are responding and sending it back to them…
But they need the time and space for us to be able to validate what they think and say so that they can come to their own conclusions themselves. They already have that within them and they just need help getting it out sometimes. So active listening is a great, great tool.
#4 Encourage parents to set aside special time.
This is the hardest one because we’re all so busy. We’ve got so much on our plate. With siblings, though, a little goes a long way. So if you can carve out some time in your day, it can be really beneficial.
At a sibling panel not so long ago, one of the siblings said, “Yeah, growing up, my parents let me stay up an extra 20 minutes every night after they put my sib to bed. And it was just our time to do a puzzle or to talk or to maybe watch part of the show.”
Another sibling said, “I used to tag along to therapy for my sibling twice a week, 50 minutes at a time. I got to sit in the car and listen to a podcast with Mom or we would talk or listen to music or whatever. But it was just my special time.”
Other sibs talk about running errands with one parent, like going grocery shopping with Dad on Saturday mornings. Even if we can turn these mundane errands that we do into special one-on-one time, it can go such a long way.
Then I always share that we had a journal growing up and my mom and I would write notes back and forth to each other in this journal. It might just be like, “Oh, I had a terrible day”, or “Today, I had a math quiz and I don’t think it went so well.”
And it was a chance for us just to communicate with each other when we had a few minutes to jot something down. There was no deadline. It wasn’t like due on Tuesday at 5:00 PM or whatever. It was just back and forth and it was a really nice way to let that person know that you were thinking about them or that you were wanted to communicate. It’s something you can do without necessarily having the time to sit down then and there with each other.
So lots of ideas there.
#5 Learn more about life as a sibling.
There’s so many great books and movies out there.
#6 Reassure your children by making plans for the future together.
For so many of us, the future is a big question mark and we just don’t know what’s going to happen.
So, frame it as a process that is ongoing and flexible and fluid and something we do together as a family in little steps, little baby steps. Future planning might be like “What are we going to do for summer care”, or “What are we going to do for home schooling next year?”
When you include siblings in these conversations about the next step, I think that is a really manageable way to introduce this idea of planning for the future and to make sure that everyone has a part in it.
I often say this too: that siblings tend to know their siblings in ways that parents don’t. It’s true. My brother and I know each other in ways that are unique because we are peers. We’re contemporaries. So we have a lot of input and valuable insight when it comes to planning for the future because we understand each other’s strengths and abilities in ways that parents might not see.
For example, who better to have than a kiddo in a planning meeting for school, who can say, “Well, you know, she doesn’t talk, but she can draw pictures to express herself”, or “She communicates this way”.
Siblings have that insight and it’s a really valuable perspective to consider when we’re talking about making plans for the future.
#7 Remember that the single strongest factor affecting a siblings interpretation of a disability or a diagnosis will be your interpretation as parents.
Something Lindy said at the beginning of the livestream really made me think about this, that you know, particularly when it comes to the future and the knowledge that at some point we’re going to have to say goodbye.
So, how we cope with that as parents is so important in determining how our other children are going to cope with it. That doesn’t mean always putting on a brave front and brushing that not so nice stuff under the rug.
Sometimes it means being really honest and vulnerable and human and knowing that we are maybe gonna have days that aren’t so good, but we’re gonna do it together and it’s OK. We’re not going to be perfect, but we’re going to enjoy every possible moment that we can and do that together.
That’s, I think, such a powerful message.