Watching your kid reach a milestone is one of the most precious moments a parent can witness. The first step, the first word, even the first time using a utensil successfully can send you into parental bliss, professing how smart, bright and wonderful your child is. And rightfully so; it truly is amazing. But when your child has a disability, that feeling is magnified twice over. Knowing that Baby G has XXXXY Syndrome and knowing the delays and extra challenges he’ll have to overcome, just makes him surpassing them so much more rewarding.
The day you find out your kid has special needs is a very long one.
Your mind speeds up and slows down all at the same time, planning contingencies, preparing the family, arranging for equipment, therapy, and financial help. You make inquiries about forms, timelines, deadlines and approvals. You fill in said forms:
surname, given name, date of birth, address, relationship to the patient, list all medical conditions…
…over and over and over.
You answer every question and concern your family and friends might have about your child’s condition, needs and how they can help. And only then, after all that, do you really take the time to absorb it yourself. And that can be overwhelming.
But after accepting this new chapter of your life, things start to adjust and shift, just slightly, every day to accommodate this new experience. Kinda like a Rubix Cube. Little moves, little changes happen until everything fits together just fine. And you know what? It’s just like every other new experience; it’s a chance to learn and grow.
And you’re probably going to suck at it for a while.
XXXXY Syndrome certainly was the last thing I expected to come with Baby G’s birth, but I’m a firm believer in the fact that everything happens for a reason. In the meantime, we had a meeting today with his team at Niagara Children’s Centre, where we discussed his progress.
When our daughter B was a baby, we taught her some simple baby sign language, following the example my sister-in-law set with her boys. It made sense to teach her a few basic signs while she figured out where her voice was. And really, who can argue with teaching your kid “please” and “thank you” at 9 months old!?
In the case of Baby G, his XXXXY Syndrome causes general delays in things like gross motor skills and speech, so using baby sign language with him was a no-brainier. He seems to have picked up a few basics so far, and we couldn’t be happier. He works each day to develop and produce different sounds, and along with that has come these common baby gestures: Read More
Hello all. My humblest of apologies for disappearing over the last couple of weeks, as I’ve started a new job, but I think I’m finally getting back into a rhythm again. But during those few weeks, Baby G has progressed very well, working through the challenges that XXXXY Syndrome comes with.
But the latest milestone we’ve witnessed is a definite increase in his babbling, and a few distinct “Ma-ma”‘s and “Da-da’s”. Even a “Ba” for his big sister!
Our speech therapist at Niagara Children’s Center did tell us that he would probably progress in speech once he didn’t have to concentrate so hard on movement, which has certainly come to pass. In addition to basic consonant sounds, Baby G has found his voice when there’s something wrong, or something that makes him sad or angry. He was not happy with B when she took one of her smaller toys from him. She’s learning that while Baby G might not like it, many of her toys are too small for him to play with, and so she needs to make sure they’re kept in safe places. Read More
Evening everyone! I’m so excited to post this update on my son Baby G and the progress he’s making despite his chromosomal abnormality. For those of you who are like, “Huh?”, my son was diagnosed with XXXXY Syndrome in utero, and I’ve written all about his challenges and victories here.
So in my last post, Baby G had attended his first physiotherapy appointment at Niagara Children’s Centre, where we worked on movements and positions that would strengthen and tone his abdominal muscles. Low muscle tone is common in babies with XXXXY Syndrome, so this hurdle wasn’t completely unexpected. Our genetic pediatrician had also advised us that we would likely see delays in gross motor skills with Baby G. Read More