Ep. 47: Siblings w/ Katie Taylor, CCLS




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Does your medically-complex child have a sibling? Are you contemplating adding one to the picture? In this episode, Katie Taylor, the child life specialist behind the popular podcast Child Life on Call, answers listener-questions.

We talk about educating them about their sibling’s medical needs, helping them cope with the difficult and complex emotions that often arise, and how to know if/when it’s time to add a sibling to the picture.

My Thoughts

The first time I knew child life specialists even existed, it was because I was receiving help from one.

Wendy was about to meet her little brother Kimball for the very first time, but this scene was no run-of-the-mill meeting a few hours post-birth in a hospital recovery room that social media feeds are full of photos of.

No, this momentous first meeting was to occur more than a week after he had arrived, and in a room crammed with babies also hooked up to countless cords, tubes, and beeping, blinking machines keeping said NICU babies alive.

So, naturally we couldn’t just waltz in there with our two-year-old daughter before prepping her for what she was about to experience. But honestly, in my NICU-parent-fog, I’m not sure I would have thought of that without the hospital scheduling that pre-meeting meeting to be had with the child life specialist and my, well, child.

“We’ll be in this room over here for about 30 minutes to an hour, depending on how long she seems interested. We’ll just be decorating some sewn dolls with medical equipment that she might see on her brother and play with them a bit. When she’s ready to come in, we’ll let you know.”

This professional seemed like a kind enough person, but I do remember thinking it was a bit odd we were discouraged from sitting in on what would undoubtedly be an adorable scene of pretend play with our precious Wendy.

Sure enough, about an hour later, they emerged with her doll plastered in Band-Aids, a feeding tube, and the like. She was prepped to meet Kimball and meet Kimball she did.

That was nearly three years ago.

And, when I was in need of a professional to teach us about siblings for this episode, my mind naturally went back to that encounter. I remembered that there are people whose profession it is devoted to prepping toddlers to meet their siblings in less-than-conventional ways.

But of course, child life specialists do more than just that.

They are professionals trained to help children and families cope with disability, hospitalizations, and medical issues.

I was thrilled to have Katie Taylor of the podcast Child Life on Call to fill that need for this episode!

In the episode, she gave us a quick refresh of the various developmental stages and emphasized the importance of bearing that in mind in all discussions with our children.

I am definitely guilty of unintentionally treating Wendy like a mini adult, when of course, she is not.

Kids have their own unique ways of perceiving the world and processing things and it’s easy to project our emotions and perceptions onto them.

She said when it comes to conversations about the other child’s medical needs and issues, we need to “dumb it down” to the most basic level. And only add more as they ask for it. She noted that kids usually ask for what they want to know. We can say something like, “What would you like to know about (insert topic)?” and give them answers and information accordingly. If they don’t have any questions, we need to drop it.

She also explained a few strategies like the use of a code word for kids to get out of situations they are uncomfortable with, taking photos of a hospital setting to show them before they come, and giving the sibling specific responsibilities when surgeries arise to help them cope.

Once, Wendy assigned herself a job for Kimball’s homecoming from an upcoming surgery, and I’m glad she took that initiative! I never thought to give her a job but now have this awesome tip for the future.

As suggested by a parent-listener, we also discussed bullying of the medically-complex child and how that can impact siblings who witness. In her words:

“Rather than going to talk to the bully, it's about finding the connection between the sibling and the sibling that is different.”

She says to teach the siblings to check in with each other after a negative encounter with another child (aka the bully). I just love this! I love envisioning them coming together and bonding over the unkindness. Obviously, it is still hurtful and inexcusable, but I love that it could be framed to have a strengthening effect. Katie summarized:

“What is going to strengthen that family is the siblings connecting together.”

This refocusing seems so healthy to me! So healthy for both the children and the family as a whole.

When asked how to know when to add a sibling to the family, Katie gave a fantastic answer: whenever you feel good and ready. This might be a year after the birth of your medically complex child, it may be five years later. Heck, it might be ten years later! But there is absolutely no pressure to go in that direction prematurely. This is of course true for all parents, but none so much as us parents of medically complex children.

So, this episode is for all parents with siblings on their mind—both existing siblings and the dream of siblings. 

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Ep. 119: Your Child’s Medical Team | How to Push Back, Ask Questions, and Build Your Dream Team w/ Dr. Kelly Fradin, MD https://d3ctxlq1ktw2nl.cloudfront.net/staging/2023-2-23/319744619-22050-1-1e2071eee4df4.m4a


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68: Dipping My Toes into Educational Advocacy