With the Christmas chaos behind us and the New Year finally here, I’ve managed to find time to share some of the progress Baby G has made while managing his XXXXY Syndrome. Sitting here with a warm cup of coffee, I’m breathing a small sigh of relief. From Christmas shopping to family dinners, there never seemed time to sit with Baby G and work on things like finger isolation, pushing, pulling, and flexibility. Amazingly enough though, he’s reached a few milestones in the last few weeks, even without focused activities.
How He’s Managing XXXXY Syndrome
Physiotherapy: The G-Man is a pro at using his walker to walk around the living room at his home day care. He eagerly approaches it when we set it up, gets himself into place and just starts motoring! He’s crawling down stairs now, which is wonderful to see, as he’s been resisting bending his knees at all when it came to that. Now, he’s doing that movement, going from standing to sitting all the time. His physiotherapist recommended we work on walking with him with one hand instead of two, and he’s becoming more and more comfortable with it. I predict he’ll be walking independently by the summer. He’ll be two and a half at that point.
Fine Motor: Our team at Niagara Children’s Centre is meeting to come up with a game plan to merge fine motor and speech into a single weekly appointment, so I hope Baby G’s progress here will start to move a bit faster. He’s pointing more often now, pushing buttons with a single finger, and turning and twisting his wrists. Tearing open his Christmas presents helped a lot with the pulling motion we’ve been working on; that in itself was a great fine motor activity, and we didn’t even realize it. For Christmas this year, we focussed on toys that promoted as much fine motor movement as we could find. One that he really likes is a piggy bank. While its primary function is learning the colours and numbers on the coins, Baby G is using it primarily to put each coin in the slot. He can also open the back of the pig to get the coins out again, by twisting the cover off, engaging some great wrist motions.
Speech: This is where we’re most concerned at the moment. Through the holidays, Baby G has been expressing himself more, and while we try to give him what he wants the first time he asks, he’s becoming frustrated that he can’t communicate better. We’re definitely hearing more “ooo” sounds now, but still not many consonants yet. We’re hoping that the new year will bring more progress here.
How We’re Managing XXXXY Syndrome
The abnormality in Baby G’s chromosomes is becoming more evident to us as he grows, knowing that most boys his age are walking and talking by now. He’s noticeably smaller than his peers, and as a friend observed, “he’s like a baby that’s staying a baby forever.” While the sentiment was loving and certainly not malicious, we know that as he grows, the delays XXXXY Syndrome causes will become more and more noticeable to others.
Yup, I do worry about it. For now, Baby G’s world consists of his day care and his close family, but when it comes time for him to go to school and interact with other children, I worry how he’ll be treated, how he’ll handle it, and how we’ll move forward as a family.
We have a lot of support systems in place to help us through the challenges ahead though, including a social worker on his team at NCC and a whole Facebook Group of parents of kids with XXXXY Syndrome. I suspect it’ll be those that we’ll rely on the most when Baby G meets those social challenges, and they’ll help him meet them head on.
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