Parents Guide to XXY

Parents Guide to 47 XXY 

Parents guide to 47 XXY was written by a mother who wrote a story about her son named Jack.  I believe all of us have a story to tell and no one is left alone. Our shared experiences can have a profound impact when used in positive ways. Many of us have found this to be extremely helpful and very in tune with raising awareness about Klinefelter syndrome.  Parents Guide to 47 XXY is a new edition on the website. If you would like to help create more useful and up to date content, write a story about your life with 47 XXY, your Son’s or how it’s impacted your family please email Info@livingwithxxy.com

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  • Commit to Learning—Knowledge is Power!

Commit to doing your own research and be wary when it comes to outdated research on the internet. Most publications are old, inaccurate, and focus too heavily on the limitations. Knowledge is power! We are committed to becoming students in this field and learning all there is to know about 47 XXY, so we can make the best-guided decisions for our boy. Our geneticist also offered a great piece of advice: don’t become overly obsessed with research that you miss out on your son’s first year of life. He is still a regular baby just like all the others. As parents, we’ve received the gift of knowledge by discovering at such a young age how Jack will grow, think, learn, and develop. Enjoy this momentous time with your son and find a healthy balance by staying in the loop with the ever-changing research, medical advancements, and studies in the community. 

 

  • Establish a Medical Team

If possible, establish a medical team that understands 47 XXY. By the time Jack was 1 month old, we already established a specialized pediatrician, geneticist, an endocrinologist. It’s refreshing to learn from these doctors instead of having to teach them and advocate for Jack’s care and needs. From our experience, most general doctors are familiar with 47 XXY, but not enough to offer the best advice and care. Your son deserves the very best! Working as a team is everything. 

 

  • Early Intervention- Proactive Vs. Reactive

Our biggest piece of advice would be starting early intervention as soon as possible! At 8 weeks, Jack began occupational therapy & physical therapy sessions weekly. He just started speech therapy this week. The therapy is crucial for motor skills, development, muscle tone, coordination, feeding, etc. When we started, he was delayed by about one month. He is now caught up developmentally and is exceeding the big milestones! It’s not easy, but we push him hard through home therapy and mix in playtime. We’ve added in weekly swim lessons too. Jack continues to progress as he is highly-driven and motivated. He has become quite a fearless little guy. Since learning about his condition and tracking milestones, we’ve noticed slight delays in his development, but Jack has worked very hard to break through every single one. We’ve learned to let him run his own race on his own timing. Instead of looking at therapy sessions as a burden, we consider them a blessing. We get the opportunity to watch Jack progress and have the reassurance that we’ve done our part to give Jack the best support early on. It is far better to be proactive than reactive! 

 

  • Focus on the Strengths

Learn to celebrate all the positive traits associated with 47 XXY instead of focusing on the limitations. (Side note: Jack is an all-star baby and if that’s indicative behavior of how he will be as an adult, then we have hit the jackpot). We’re learning more and more about the positives and plan to help Jack tap into his unique strengths. Instead of trying to dodge or mitigate the weaknesses, help your son identify and explore his strengths.

 

  • Celebrate Your Son’s Uniqueness

We are all created uniquely—we all have our own sets of strengths & weaknesses, challenges & triumphs, and ways & rates in which we grow, develop, learn, and communicate. Your son was born with an extra X chromosome, that’s it. Instead of comparing him to “normal” or “typical” kids or seeing him as “different,” celebrate his uniqueness and commit to celebrating all the ways that make him special. For example, instead of anticipating potential learning challenges in school, help your child explore the unique ways he learns and how his brain processes information. Shift your mindset and see 47 XXY as just a different way of approaching life. 


I hope you are able to use Parents Guide to 47 XXY to help those around you.  Thank you. 

Klinefelter Syndrome Australi