XXXXY Syndrome: A Special Needs Mom?

Posted May 12, 2016 by Niagara Mommy in Baby G and XXXXY Syndrome / 5 Comments

Another update on how we're managing XXXXY Syndrome

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.

Another update on how we're managing XXXXY Syndrome

Communication

We’re seeing so much more communication from him, something that we were told might be hindered by his chromosomal abnormality. Everything from baby signs to gestures to sounds, he’s getting into all of it now. Even in play, he’s learning how to return the play, which is honestly, almost magical. He’s learned to tickle us, and of course, we laugh in response. He waves bye-bye, signs “Please”, blows kisses, high-fives and signs “All done”. Oh, and this kid totally knows where the cookie cupboard is and starts flapping his cubby little arms and shouts as I open it and pull out an Arrowroot biscuit.

Physio

He’s crawling much faster these days, and making sounds as he goes. He’s also learned how to pull himself up to his knees. Very exciting, but means the crib’s going to have to be lowered soon. But still, as typical of kids with XXXXY Syndrome, he’s still delayed in gross motor skills, but we’re working hard on helping him feel how his upper and lower body are connected by his core muscles. Our physiotherapist is recommending we work specifically on seated play, where he’ll become more comfortable leaning over from side to side and pulling back up to centre. She has also recommended that we continue to focus on getting him to move from his belly to a seated position, something he juuust hasn’t quite gotten yet.

With these focuses in mind, I already caught sight of him leaning out of his comfort zone and pulling back up while we were rolling a ball to each other. And I saw, as he pulled up to centre again, this look of “Oh…I guess I can do that”. And it was awesome.

Fine Motor

In speaking with the cognitive behavioural therapist, she’s recommending that we work on fine motor skills while he’s sitting in a completely supported place, so he won’t be concerned with his trunk so much and he can concentrate on things like stacking blocks, or cups, or putting toys in a bucket and taking them out again. Delays in fine motor are all part of the XXXXY Syndrome package, so I’m looking forward to seeing what he can do while sitting in his high chair. I mentioned to her that while I’ve seen him use his thumb and forefinger to pick up small objects, like cheerios, it’s more often that he uses a grabbing motion to catch as many as he can. She suggested I use a very small container, with just a few Cheerios in it, as it will force him to narrow his hand to get into the container and work on those fine motor muscles. I’m looking forward to seeing the results of that.

As I watch Baby G crawling, doing laps around the kitchen and living room like a boss, I realize that not much has changed at all for us. Getting to all the appointments has been interesting, but we’re splitting that up among other family members, and they’re excited to see the work that he’s doing and really, just be a part of it and work with him when they come to visit. Dealing with the impact of Baby G’s extra chromosomes is going relatively smoothly, and if and when more changes come, our little family will manage, making those little shifts, small adjustments so everything just falls into place. And honestly, I’ve found that being a special needs mom isn’t any different from being a regular mom…every kid has special needs, but a few just need a little extra help.

For more updates on Baby G and his progress managing his XXXXY Syndrome, subscribe to get all the latest straight to your inbox, and if you’re into my other shenanigans, hook up with me on Facebook and Twitter. Thanks so much for reading.

Hugs,
Vickie


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