Your child has XYY Syndrome. I’ll never forget the day we heard those words. Our son was only 2 ½ years old with his whole life ahead of him and we didn’t even know what XYY meant. The geneticist told us that there was not much information out there regarding this genetic disorder, and what was out there, seemed discouraging but outdated, so I should “Just stay off the internet”. So naturally, I went home and got online.
It was 2006 and if you thought there isn’t much information online now, there was far less then. What I did find wasn’t good and the more I read, the more upset I was. Not knowing what else to do I called my pediatrician and told him what we found out with the genetic testing. He didn’t have another patient that had this issue. He had never really heard of it. So, he started googling it while we were on the phone. His advice to me… “Stay off the internet.” So naturally, when we hung up the phone, I got back online. That proved to be the best decision I ever made. It was then that I ran across a conference that had happened earlier in the year. One of the speakers was Dr. Carole Samango-Sprouse and she was speaking on Sex Chromosome disorders. She was the first person I came across who actually had factual information on this disorder. So, I googled some more and found out that she was only a few hours away from us in Maryland. I called that day and made an appointment.
I walked into that appointment a nervous wreck and I walked out feeling as if someone just lifted a thousand-pound weight off my shoulders. I knew right then that everything would be okay. We finally had a partner in this journey and together we would make sure that our son got the help he needed, even before he needed it, because Dr. Sprouse knew what was to come and helped us to head it off before we were behind the ball. That was our plan then, and 13 ½ years later it is still our plan. We continue to see Dr. Sprouse every year and we let her set the plan that we put in place for the next year. When an issue comes up, we call her. If we feel that our son needs to talk with her during the year, she Face Times with him. When he was having trouble with his knees and ankles, she looked at his feet and ankles over Face Time and decided he needed orthotics put in his shoes (which made the world of difference). She is the friend, nanny, doctor and expert that everyone needs to have in their lives while they are raising kids.
During his younger years, he had needed help in some areas; speech, reading, and fine motor skills. We took him to therapists and put in the time to work with him. One by one, we watched his weaker areas come back up to age level. He learned to tie his shoes, ride a bike and swim (despite his protests). During his middle school years his delayed executive function wreaked havoc on his organizational skills. With Dr. Sprouse’s help, we learned some strategies to help him stay on track to get his school work completed, and turned in on time. His 8th grade year, we decided to finally disclose his diagnosis to the school. He now benefits from extra time on tests and has the ability to complete all his work and take all his notes on the computer. It wasn’t always easy, but when we saw that he was struggling, we advocated for the resources in school to help him succeed. Now, he is finishing up his Freshman year in high school. The change from Middle School to High School didn’t come easy and it took a full semester before he began to pull all the new responsibilities and freedoms together. We still have to stay on top of his assignments, but we are confident that he will go to college in a few years and he will be successful.
When I think back to those early days, months, and years after diagnosis I can still remember how on edge I was about what the future held. If I could go back and do it all over again, the thing I would tell myself is to not let the diagnosis define who he is. Not to be so quick to blame his behaviors and struggles on the diagnosis and don’t let them have a “free pass” because of the diagnosis. I have four kids. Two biological boys and two adopted girls from China. They all grew up with their own set of challenges. All four kids needed Speech Therapy. (So did I come to think of it!) Three of the four needed Occupational Therapy. Two of the four struggle in math, (my XYY son happens to be a math whiz) and despite signing them all up in the early years for basketball, soccer and T-Ball, none of our kids are athletic. But all of this, all of their strengths and all of their weaknesses is what life is all about. Many kids have areas where they need help, even without a diagnosis. Many kids walk later, talk later, read later than “typically developing” kids (does anyone even have a “typically developing” child?!) Toddlers have temper tantrums and teenagers have mood swings. They don’t need to have extra X’s or Y’s to go through those stages. But as a parent who sees their child struggling, you get them the help they need. Having a child with a sex chromosome disorder is no different. Give him/her the same rules that you would give to any other child. My XYY’er is now 15 ½ and he’s a caring, loving, and good hearted teenage boy. Out of all four of my kids he’s the first to hug me, kiss me and tell me he loves me. But most of all, don’t let the diagnosis define who they are or what they can become. Just love them and enjoy the ride.