It is so nice to finally have a relatively healthy little guy! RSV season is over, and it seems like the kids around town are hacking less and their snot noses are drying up. All of these thing combined mean more playdates and social interactions for Jaxson (and moms).
We LOVE playdates! A chance to catch up with our friends and have Jaxson interact with kids his age. I find he learns SO much by watching other kids, seeing how they move and do things seems to make something ‘click’ for Jax. It’s great! However over the last couple of months we have noticed significant differences in these social interactions.
There was a time when Jaxson would sit across from his little buddy, they would stare at each other, grab the others face, pull hair, pat their legs and make faces at each other. That is no longer the case. Jaxson is now left sitting, stationary and immobile as he watches the other little ones zoom past him on their feet. His buddies are now walking and moving to get what they want. Jaxson is left to sit and watch.
It sucks. It sucks big time.
For anyone who has ever spent any time with Jax you would know how ‘social’ he is. He holds your gaze, interacts, and wants nothing more than that human interaction. He could literally care less about toys when there is a person he could be engaging with! You would also know how smart he is. You can see in his eyes that his wheels are always turning, he is deep in thought planning out his next move, sound or gesture. Unfortunately for him, his smarts end up causing him a great deal of frustration. He sits very patiently watching his buddies boogy around him. In his mind he wants to move, he wants to move SO very bad! He sits, clenches his fists and tenses his whole body up and ‘growls’ in frustration. It’s the only way he can release his pent up frustrations.
It’s hard to watch. He knows in his mind what to do to get moving. However his mind hasn’t figured how to tell his body how to move and what it needs to do to put it in to action. Not to mention the low muscle tone (a feature of Ds) and his weight are also working against his plan to move.
There is no need to feel bad or pity Jaxson. He works VERY hard everyday to figure out how to move. He’s figured out he can string a couple rolls together to reach a dog, and to spin and push backwards when he’s on his belly to reach his box full of musical instruments. He’s getting it, and one day he will be zooming about with his buddies.
Now you’re probably wondering why I titled this post “The Down Syndrome Advantage”. Non of what I’ve written here really seems like much of an advantage does it? Let me explain.
When we are at these playdates and Jaxson gets too frustrated to be sitting on the floor, we will pick him up. Jaxson will turn his body into us, grab our face and bring his open mouth in to ours for a big kiss. He will sit on our laps and bounce away. Every so often he will turn in for that open mouth kiss or a snug. When he’s craving more love he will turn all the way around so he is face to face with us. He will run his pudgy hands down our cheeks and hold our gaze. He will outstretch his arms and wrap them around our necks. Or he will collapse his whole body into ours and lay his perfect little face on our chest for long periods of time. The other moms always stop and longingly stare at this exchange. The words “awwwww, I wish mine did that. They are too busy for mommy snugs now” are always said. Then when we tell them that Jaxson is ALWAYS like this they literally turn green with jealousy.
Now do you understand the reason for the title? Down syndrome is the reason why our little guy isn’t walking, crawling, or even pivoting on his bum! We have 2 choices. We could be just as frustrated as Jaxson with his lack of movement. Irritated that we are hefting around a 26 pound boy. Sad that his gross motor skills are way behind our friends kids. OR we can relish in the fact that we have a snuggly, lovey, ‘little’ baby for just a teensy bit longer than everyone else.
I think we have the advantage here! (Thank you Down syndrome :P)
YES!!!!! I cherish Jaxson’s little pudgy hands so very gently cradling my cheeks as he stares intently at my mouth which either is singing songs to him or whispering words of love to him. I’ll NEVER forget these special moments. ❤️❤️❤️
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Again…….said so wonderfully…..
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I don’t know you, or your little man, but I love him.
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