Finding your XXY parenting community

I recently sat down with another Living With XXY community mom to discuss her story. Like many parents in the Klinefelter syndrome community, she didn’t have a great experience when it came to learning about her son’s diagnosis. Finding out her son had an extra X chromosome was initially upsetting, confusing, and overwhelming. Fortunately, she was able to find connections with other mothers on a similar journey and men living with Klinefelter syndrome. As time went on, she became a resource for others.

We chatted for a couple more hours. The time flew by while we talked about various topics. It felt like I’d known her forever. We kept returning to the topic of our boys, who aren’t far apart in age. We talked about their victories, challenges, and amazing personalities. We swapped stories about fighting for services and advocating for our sons.

As we wrapped up our conversation, I commented that talking with another Klinefelter syndrome mom had been great. It’s taken me a few years, but with time, I’ve developed a community of Klinefelter syndrome moms to talk with, and it’s made a huge difference for me. There’s such importance in finding your XXY parenting community.

Staying quiet:

We didn’t tell many people when we received Noah’s diagnosis. At the time, I felt scared and overwhelmed. I also felt ashamed, like I’d done something to cause it. I know now there’s nothing to be scared of or ashamed of.  Klinefelter syndrome is one of the most common genetic disorders, impacting 1 in 600 to 1 in 900 males. It’s spontaneous and not inherited. There’s nothing I, or anyone else, did to cause it. 

I never want Noah to feel shame for who he is, which has led me to work with the community. When I did tell people, I received comments that ranged from well-intentioned to terribly hurtful.  Many comments made me feel I was missing something regarding Noah’s diagnosis. From the research I’d done, I didn’t see what the fuss was about.

I stopped telling people for several years. I felt very alone. I didn’t feel anything was significantly different about Noah, but he wasn’t a typical kid. Comments like “he’s probably going to look pretty normal so most people probably won’t even know he has anything,” hurt my feelings. I felt defensive of my son. However, as time passed, keeping this secret wasn’t sustainable. 

Finding community:

While I have connections outside of the 47, XXY community, there’s something about talking with another parent who just “gets it.” When I’m talking with another parent, one of the things commonly brought up is a sense of loneliness, or others not being able to relate. While our loved ones want to support us and our children, they don’t always know what to say or do. They have no frame of reference to understand what we’re going through.

Being an unexpected expert:

When deciding to have children, I never thought I’d need to become well-versed in chromosomal variances. I trusted healthcare providers to have the answers to basic questions other parents had. I became more than a mother when Noah was born, as many other parents in the community did when their sons arrived. We’re cheerleaders, advocates, researchers, and educators on top of our parenting duties. We’re fighting for support services, planning for the future outside the norm, and constantly scouring the internet for the newest research.

We’re watching our kids, deciding what to bring up to the pediatrician. We wonder if a behavior is a symptom of Klinefelter syndrome, or if it’s regular kid stuff. We worry about getting them the support and services they need, but also consider the future. What will it look like when they become teenagers and adults? What kind of fertility care will be available to them? Will they be healthy and happy? Will they have relationships? These are shared worries and concerns that others outside the community may never consider.

Living in the unknown:

These are questions we wonder about and don’t yet have answers to. If you’re anything like me, living in the unknown is maddening. We’re navigating through a diagnosis with very little research. Most of what’s out there is outdated. Even healthcare providers don’t have the answers. We’re learning on the fly, and that can be overwhelming. Our worries may or may not be greater than those of other parents, but they are unique to our situation. 

I don’t share this to be a downer or diminish the many joys of raising a boy with an extra X chromosome. Many wonderful things come with this diagnosis. Focusing on the positives is important, and so is acknowledging the stress. There have been many times when I’d asked a friend with a neurotypical child about behaviors or areas of development I’m seeing with Noah, and they haven’t shared my experience. I’m glad they don’t understand what we’re going through, but it’s also lonely.

However, when I texted one of my XXY mom friends to ask, they almost always said, “I know exactly what you mean, and this is what we did.” That simple validation means so much. While our experiences and observations may feel anecdotal, there’s no denying we’re living through it. We are the experts on our sons, and knowing we aren’t alone is so comforting. 

Finding your XXY parenting community:

In the coming months, you will see more opportunities for our community to connect. Volunteer Kelsey Fuglsby will launch support groups for the community, providing opportunities for more connection. We will continue to provide peer support and mentorship. Finally, we hope to continue sharing stories from the community. If you’d like to share your story, please email me your submission at [email protected], or we can set up a time to chat. 

Navigating this diagnosis can feel like a lot, no matter what stage you’re in. However, you aren’t alone. There is a community of wonderful people here sharing experiences, stories, and ideas on supporting each other, our boys, partners, and families. We’re glad to have you.