A story about 15 year old Sean DiSandro Living with XXY.
On July 29, 2002 I gave birth to my second child, a baby boy. He was identical in weight and length to my first child three years prior, a daughter. They even looked so similar at birth they could have been twins. However, early on it was clear they were not going to be similar in their development
Sean struggled to meet his developmental milestones. He did not crawl until he was one, and didn’t walk until he was two. Between one and two our pediatrician referred us to physical therapy, an orthopedist and finally a neurologist. When we finally got the diagnosis, the neurologist was only able to tell us he would be severely learning disabled and unable to have children. We immediately called our state, New Jersey, for an evaluation for Early Intervention. Sean had early intervention come in 3 days a week from the age of 2 to 3 for speech, PT and OT. He then went to our town’s free pre-school where they provided those services free of cost.
Sean DiSandro went on to learn to ride a two wheeler, swim, ride a skateboard, etc. He broke his arm playing Frisbee in the street, received stitches after splitting his head open on his Thomas the Train Table. All of the things little boys do, even if it was a bit slower then most, as he had a lot of fears early on.
Now he is 15. He has had numerous struggles in school and socially. He is multiply learning disabled has difficulty reading social cues, which made friendships difficult, and struggles with depression and anxiety. Sean was diagnosed with ADHD, inattentive type at 6. We tried medication but after a year, it seemed he had side effects to everything. And then we tried medication again at 11 and it was a much more successful journey. We started seeing a developmental pediatrician who was much more in tune to his needs. Now he is old enough to understand and appreciate the need for his medications and there is no more fight getting him to take them daily.
That being said, he is now a sophomore in high school. And is attending a career program for half a day and regular high school half a day. Sean DiSandro is active in his youth group and goes on twice annual mission trips, he is a Boy Scout, in ROTC, plays lacrosse, is on the bowling team, a member of the ski/snowboard club, and manages girls’ soccer team. He is the FIRST to come to the defense of anyone being bullied or teased.
We have met many challenges with him, but have also had so many successes. As his mom, I try to not look too far into the future and take things day by day. It is difficult at times to balance parenting him at times and remembering that he is not a “normal” kid. I try not to set low expectations for him as I want him to achieve the most that he can and strive for more than what is “expected” of him. Kristin DiSandro
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Also check out things people with Klinefelter syndrome are Good At.