Aging and Memory Care
Cleft Care
ADHD and Mental Health
Directories & Resources

Growing Up with Cleft:
A Resource for Kids, Teens & Young Adults

Growing up with a cleft comes with experiences that aren't always talked about. Some questions are practical. Others are personal. Some don't even get asked because they're hard to put into words.

This is a place to find information, explore questions, and hear directly from teens and young adults about their experiences growing up with cleft. You'll also find perspectives from families and professionals who have been part of the journey along the way.

How This Resource Came Together

This resource started with an idea: to create a space where teens and young adults growing up with cleft could hear more directly from people who have been there, ask the questions that don't always come up in a clinic visit, and share the experiences that can be hard to find in traditional cleft resources.

As I started putting the idea out into our community, one of our teens reached out with an enthusiasm that helped move the project forward. She wanted young people with cleft to have this kind of space and wanted to help create it. Since then, she has become a true collaborator, sharing her own experiences, answering questions thoughtfully, and helping guide what this space could and should become.

In mid-2026, we learned that our clinic would be closing. While the clinic is coming to an end, we don't want this resource, or the voices behind it, to disappear with it. This page lives here, on our own site, separate from the clinic, so it isn't going anywhere. Through the end of the year, we'll continue inviting teens and young adults from our community to share their experiences, perspectives, questions, and advice so that others can benefit from what they've learned along the way. The young people we've had the privilege of working with have continually impressed and inspired us with their insight, honesty, resilience, and willingness to help others. Our hope is to preserve some of that here, creating a resource shaped not just for young people growing up with cleft, but with them.

Voices from the Cleft Community

Real experiences, advice, and perspectives from people who have been there.

There isn't one way to experience growing up with cleft. Here, teens and young adults share their own perspectives on questions that can come up along the way, from surgeries and school to friendships, confidence, and figuring out how cleft fits into their lives. These are their experiences, in their own words.

  • When I was younger, I usually just told people I had a speech issue because that felt like the simplest explanation. As I've gotten older, I've become much more comfortable talking about my cleft. If someone I'm close with asks, or if someone is genuinely curious and respectful, I'm happy to explain what a cleft palate is and share more about my experience. I think the biggest change has been realizing that I get to choose when and with whom I share that part of my story.

  • One moment when I felt especially proud was when I performed on stage as a singer for the first time. Singing had been a meaningful part of my journey because it helped me build confidence and appreciate how far I had come with my speech. Standing on stage, I was able to focus less on the challenges I had faced and more on what I was capable of achieving. It reminded me that my cleft was only one part of my story, not something that defined my abilities.

  • I don't remember one specific conversation because it was always openly discussed within my immediate family. I always knew I had a cleft palate, and it was never treated like something that had to be hidden at home. At the same time, I felt like I had to keep it fairly private outside of my immediate family. I rarely talked about it with friends or extended family because I didn't want to be treated differently or have it become the first thing people associated with me. I think that sometimes made me feel a little disconnected from it. It was something I knew was part of me, but not something I openly talked about.

  • I think it would have been reassuring to hear that there isn't one "right" way to feel about having a cleft. Some days you don't think about it at all, while other days it feels much more significant, and both are completely normal. I also wish someone had emphasized earlier that confidence doesn't come from pretending your cleft doesn't exist. It comes from becoming comfortable with it being one part of your story, not the whole story.

Additional Sections

Hub Home
Aging and Memory Care
Cleft Care
ADHD and Mental Health
Directories & Resources

The WE Neuropsychology Resource Hub is a resource of WE Neuropsychology

Return to WE Neuropsychology | About Dr. LoBosco | Clinical Services | Contact

Email: drjlobosco@gmail.com
Ph: (424) 254-9820