One of my favorite moments at night is when I don't have to put the lock back on the under-the-sink cabinet where our garbage and recycling reside. That means Quinn is in bed (or on his way under his mommy's care) and we may stretch our independent adult wings, if only for a little while.
Doubtless I'm the first one to share this startling insight, but ...
He's two and a half. There are no free rides with a toddler. My son was calmer and better behaved than many in his age group; yet, he still wore me out. Actually, the two's were calm enough -- it was when he hit four that I got slammed with the perpetual motion and hyperverbosity. So please don't attribute all the exhausting behavior to the diagnosis. If you have another child down the line somewhere and the chromosomes are not irregular, you may be shocked to find little difference between Quinn and the new sibling. You may even find yourself waxing nostalgic about Quinn's more endearing qualities by comparison. And as your posts make clear, he IS endearing, far more often than not.
We know some of this is just normal parenting. But we spend a lot of time with typically developing two-year-olds and their parents and the behaviors we see and hear about are radically different. Our fellow parent friends are indeed worn out, too, but most of them, on observing us with Quinn, readily acknowledge the additional challenges. Most other parents know many challenging things are "just a phase"; with us, the phases pass a lot more slowly. For example, nobody likes diapering and toilet training, but the average age of toilet training in a boy with FXS is 5. That's about 2 more years of dealing with a common annoyance of parenthood. Even after 5, accidents are common through childhood and adolescence. And that's just one aspect of parenting. After all this work, it is quite likely our child will continue to live with us, or possibly in an adult group home. Though we already do and certainly will continue to experience other rewards, unlike most other parents, our hard work is unlikely to be rewarded with even a real high school graduation ceremony, let alone college, moving out, marriage, and/or grandkids. The average iq for a male with FXS is 41. So though there's overlap, of course, between parenting a typically developing child and a special needs child, the experiences are very very different.
Sounds like everything is settled, but I would still like to thow in a little....From a mother of "both"-----HUGE difference in the level of exhaustion. The frustration of having to work twice as hard (at least) only to get half the results (at best) is so emotionally exhausting. Physically tiring, oh man, where do I begin...maybe later... Not your fault; one can't truly understand unless they know first hand. :)
We have 3 with full mutation and just hit 40. Life IS exhausting. We have to figure out new ways to get our bodies in better shape to keep up with them. I think that's why I ADORE sleep. But despite the difficulties, they keep my life from being anything but boring! New stories to tell everyday to whomever will listen.
As it Was
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I think, a few years ago, I just got tired of Fragile X being the biggest
thing in my life. Well actually it will always be the biggest thing. Unless
there...
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Dear friends,
This is my last post. It is a couple of my favorite pictures of Brody. It
was fun to do a blog about the children growing up. Our Brody is...
I scared.
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I recently had the pleasure of visiting Target. Actually 2 Targets for a
combined 3 visits in a single day which was a personal record TYVM. Target
is on...
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Wow time flies!! I haven't posted in 4 years?? Can that be? What the heck
have I been doing???? Oh yeah raised four kids and building a career. But
still ...
valentines fun and recipes
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Valentines was low key, but sugar filled around here. Thanks to Pintrest
and All Recipes for these amazing recipes.
Valentine tradition for us is heart sh...
teammates
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We found them like this. Apparently he buckled her in so that we could all
go to Dunkin Donuts. And yes, not only did I take them, but I bought
Annabelle ...
I Want Cookie
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Update on the previous post.
We're working on him using a sentence to express his needs. "I want...."
It's not that he's never put three words together,...
What's Up With The X Mom Gang?
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The Gang has undergone some changes and new members have been recruited. We
moved almost two years ago and the boys figured I wasn't nearly busy enough
so ...
More fun food from the CSA and a lifestyle change
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We're still loving our CSA bag. On Friday night, we made roasted butternut
squash, and we couldn't eat it all, so this afternoon I used the leftover
roaste...
Catch-up Post
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Man, this blogging thing is tricky. When there’s not much going on, it
follows that there’s nothing worth blogging about. But when everything is
going on, ...
8 comments:
Zach,
Doubtless I'm the first one to share this startling insight, but ...
He's two and a half. There are no free rides with a toddler. My son was calmer and better behaved than many in his age group; yet, he still wore me out. Actually, the two's were calm enough -- it was when he hit four that I got slammed with the perpetual motion and hyperverbosity. So please don't attribute all the exhausting behavior to the diagnosis. If you have another child down the line somewhere and the chromosomes are not irregular, you may be shocked to find little difference between Quinn and the new sibling. You may even find yourself waxing nostalgic about Quinn's more endearing qualities by comparison. And as your posts make clear, he IS endearing, far more often than not.
Have a good day...
V
We know some of this is just normal parenting. But we spend a lot of time with typically developing two-year-olds and their parents and the behaviors we see and hear about are radically different. Our fellow parent friends are indeed worn out, too, but most of them, on observing us with Quinn, readily acknowledge the additional challenges. Most other parents know many challenging things are "just a phase"; with us, the phases pass a lot more slowly. For example, nobody likes diapering and toilet training, but the average age of toilet training in a boy with FXS is 5. That's about 2 more years of dealing with a common annoyance of parenthood. Even after 5, accidents are common through childhood and adolescence. And that's just one aspect of parenting. After all this work, it is quite likely our child will continue to live with us, or possibly in an adult group home. Though we already do and certainly will continue to experience other rewards, unlike most other parents, our hard work is unlikely to be rewarded with even a real high school graduation ceremony, let alone college, moving out, marriage, and/or grandkids. The average iq for a male with FXS is 41. So though there's overlap, of course, between parenting a typically developing child and a special needs child, the experiences are very very different.
I'm sorry ... After reading some of your earlier posts here, I recognized that I was throwing "Me-too's" at you.
Won't happen again...
/v
Thanks, Volly, much appreciated. : )
Sounds like everything is settled, but I would still like to thow in a little....From a mother of "both"-----HUGE difference in the level of exhaustion. The frustration of having to work twice as hard (at least) only to get half the results (at best) is so emotionally exhausting.
Physically tiring, oh man, where do I begin...maybe later...
Not your fault; one can't truly understand unless they know first hand. :)
and usually I throw, not thow
We have 3 with full mutation and just hit 40. Life IS exhausting. We have to figure out new ways to get our bodies in better shape to keep up with them. I think that's why I ADORE sleep. But despite the difficulties, they keep my life from being anything but boring! New stories to tell everyday to whomever will listen.
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