In case anyone needed any proof that I don't take myself too seriously these days, I present to you the following:
The Five Most Embarrassing Songs on my iPod (that get regular play)
1. True Colors - Phil Collins
2. Home - Michael Buble
3. Crazy Love - Aaron Neville
4. Just the Way You Are - Bruno Mars
5. By Your Side - Sade
Wow, I think I better hit publish before I change my mind on this. Excuse me while I go hide my face in shame.
P.S. Feel free to share your Humilating Hits in the comments...
Tuesday, October 18, 2011
Monday, October 17, 2011
Birth Order
I commented to Lisa the other day that sometimes I envy her the fact that her son, Finn, who has Ds was her sixth child. I think anyone who is a mother would agree that each child changes your life but that first one...well, the culture shock is a doozy. My situation was even a little different in that Pacey was premature and had his medical issues we dealt with before we even got his diagnosis. All put together? It was about the most atypical introduction to motherhood you can have. It's hard to acknowledge, but I truly believe that I didn't bond with Pacey as his mom until close to his first birthday.
I remember there being so much that I hadn't quite decided about how I'd approach motherhood...to breastfeed or not, to teach sign language or not, daycare or nanny, etc. And then I had a bunch of unexpected and foreign factors added into those decisions to make and I felt SO out of my depth. I guess sometimes I feel like if I had at least been through some of those experiences and decision-making with another child at least I'd have something to go on. And sure, I know that every kid is different but at least I'd have had some trial-and-error under my belt. It was really hard to figure out sometimes if I was doing everything I could to help Pacey or if my lack of experience was making things even harder for him.
Perhaps the hardest thing about having Pacey first is that it set me up to believe, naively, that a second, more "typical" experience with pregnancy, birth, babyhood etc would be easy and it was ANYTHING but easy. My pregnancy was much more difficult, taking care of a newborn right away (plus toddler) after a c-section was so demanding...although I'd never ever wish for a preemie again, there is something to be said for having 8 weeks to recover while your baby is in the hospital! And Brighton was just a much more needy baby compared to laid-back Baby Pacey.
Of course, there were a lot of good things about Pacey being my first child. Probably the biggest thing was that we weren't worried about another child's needs while we dealt with hospitalizations and a pretty rigorous therapy schedule. I could truly put all of my resources into him and I am grateful that I wasn't having to split my time and attention at that point. I also think that it was easier not to have another typically-developing child's milestones to compare to. I knew, based on the literature, that most children hit milestones quicker than Pacey did (and boy did it sting sometimes to see a friend's much younger child crawling/walking/whatever) but I didn't have a magic age in mind that had been my own past experience. For that, I'm grateful.
I think the thing I like the best about Pacey being my oldest child is seeing him in his big brother role. I know at some point that Brighton will "lap" him in many ways and I hope that she will stick up for him if and when it is called for. But for now, he is her protector and she feels comforted by his presence. She hates it when we drop Pacey off for school and wriggles out of my arms to go and wrap him in a huge hug at pick-up. The other day we were at the indoor play structure at our gym and there was a birthday party group of some older, sorta rambunctious boys playing. Brighton was a little intimidated by them but as long as she was with Pacey she was fine. When she needed a boost up she'd call for his help and, despite the fact he only has about 2 inches and 5 lbs on her, he'd crouch down and unceremoniously shoulder barge her rear end up until she could get a foothold. I'm happy he will always be her big brother.
Thoughts from anyone else about where in your birth order your child with Ds came? Or, if you don't have one, thoughts on birth order in general?
I remember there being so much that I hadn't quite decided about how I'd approach motherhood...to breastfeed or not, to teach sign language or not, daycare or nanny, etc. And then I had a bunch of unexpected and foreign factors added into those decisions to make and I felt SO out of my depth. I guess sometimes I feel like if I had at least been through some of those experiences and decision-making with another child at least I'd have something to go on. And sure, I know that every kid is different but at least I'd have had some trial-and-error under my belt. It was really hard to figure out sometimes if I was doing everything I could to help Pacey or if my lack of experience was making things even harder for him.
Perhaps the hardest thing about having Pacey first is that it set me up to believe, naively, that a second, more "typical" experience with pregnancy, birth, babyhood etc would be easy and it was ANYTHING but easy. My pregnancy was much more difficult, taking care of a newborn right away (plus toddler) after a c-section was so demanding...although I'd never ever wish for a preemie again, there is something to be said for having 8 weeks to recover while your baby is in the hospital! And Brighton was just a much more needy baby compared to laid-back Baby Pacey.
Of course, there were a lot of good things about Pacey being my first child. Probably the biggest thing was that we weren't worried about another child's needs while we dealt with hospitalizations and a pretty rigorous therapy schedule. I could truly put all of my resources into him and I am grateful that I wasn't having to split my time and attention at that point. I also think that it was easier not to have another typically-developing child's milestones to compare to. I knew, based on the literature, that most children hit milestones quicker than Pacey did (and boy did it sting sometimes to see a friend's much younger child crawling/walking/whatever) but I didn't have a magic age in mind that had been my own past experience. For that, I'm grateful.
I think the thing I like the best about Pacey being my oldest child is seeing him in his big brother role. I know at some point that Brighton will "lap" him in many ways and I hope that she will stick up for him if and when it is called for. But for now, he is her protector and she feels comforted by his presence. She hates it when we drop Pacey off for school and wriggles out of my arms to go and wrap him in a huge hug at pick-up. The other day we were at the indoor play structure at our gym and there was a birthday party group of some older, sorta rambunctious boys playing. Brighton was a little intimidated by them but as long as she was with Pacey she was fine. When she needed a boost up she'd call for his help and, despite the fact he only has about 2 inches and 5 lbs on her, he'd crouch down and unceremoniously shoulder barge her rear end up until she could get a foothold. I'm happy he will always be her big brother.
Thoughts from anyone else about where in your birth order your child with Ds came? Or, if you don't have one, thoughts on birth order in general?
Sunday, October 16, 2011
Phoning it in
I'm tired and Sunday Night Football, a cold beer and homemade pizza are calling me. Have some cute pictures of my kids in place of my daily wisdom (ha).
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| "Pacey be Eugene, Brighton be Rapunzel" (we are deep into Tangled here) |
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| This kid is a seriously good sport |
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| Someone's daddy bought her a present today. There are already long blonde fake hairs all over my house. |
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| Please note the football jersey underneath the princess dress. We encourage ALL gender stereotypes in this house ;) |
Saturday, October 15, 2011
Lighten Up
Being a parent has its challenges, but I also think that it's changed me for the better in several ways. The biggest one? I have gradually stopped taking myself so seriously. Anyone who knows me would probably describe me as a pretty serious person. I have been frowning so intensely for so long it would take more than Botox to erase the lines between my eyebrows (not that I want to...it would be entirely pointless!)
When I was a kid I was painfully self-conscious. I remember plenty of scenes with either family or friends where the group of kids would decide to put on some kind of performance. On rare occasions I'd be into it and participate freely, but more often it was just too embarrassing for me. I hate to be the center of attention and I was just too acutely aware of people watching me. My dad, especially, would really try to coax me to get into the spirit, and I appreciate now that he just wanted to see me having fun. But as he would tell you, my heels...they were made for digging in.
Anyway, I wouldn't say that I necessarily love the limelight at this point, but putting a smile on my kids' faces trumps nearly any level of personal humiliation. I'm not a particularly gifted dancer but when we have afternoon dance parties to shake off the post-nap crabbies, I pull out all the stops and shake my booty with authority! And I'm rewarded with giggles and pleas for more.
Any type of public dancing, performing, getting up on stage, volunteering, etc was absolutely a NO GO when I was a kid. I'd rather have died than get up a dance with a DJ at a fall festival, but you know what? The kids' school held a festival the other week and had a kids' dance company there playing music and encouraging them to dance. Brighton was a little lukewarm about it, but Pacey and I got out there and danced like fools. Literally nothing else mattered to me but the look of complete joy on his face.
I know I don't have all the answers, or even most of them. I'm not a perfect mom. I yell on occasion and my patience has a limit and sometimes? I just don't feel like drawing/playing/doing whatever it is She Who Must Be Obeyedrequests commands. But darn it, I can be silly and we have fun.
When I was a kid I was painfully self-conscious. I remember plenty of scenes with either family or friends where the group of kids would decide to put on some kind of performance. On rare occasions I'd be into it and participate freely, but more often it was just too embarrassing for me. I hate to be the center of attention and I was just too acutely aware of people watching me. My dad, especially, would really try to coax me to get into the spirit, and I appreciate now that he just wanted to see me having fun. But as he would tell you, my heels...they were made for digging in.
Anyway, I wouldn't say that I necessarily love the limelight at this point, but putting a smile on my kids' faces trumps nearly any level of personal humiliation. I'm not a particularly gifted dancer but when we have afternoon dance parties to shake off the post-nap crabbies, I pull out all the stops and shake my booty with authority! And I'm rewarded with giggles and pleas for more.
Any type of public dancing, performing, getting up on stage, volunteering, etc was absolutely a NO GO when I was a kid. I'd rather have died than get up a dance with a DJ at a fall festival, but you know what? The kids' school held a festival the other week and had a kids' dance company there playing music and encouraging them to dance. Brighton was a little lukewarm about it, but Pacey and I got out there and danced like fools. Literally nothing else mattered to me but the look of complete joy on his face.
I know I don't have all the answers, or even most of them. I'm not a perfect mom. I yell on occasion and my patience has a limit and sometimes? I just don't feel like drawing/playing/doing whatever it is She Who Must Be Obeyed
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| Clearly I put on my helmet when I take the Toy Story bike out for longer rides |
Friday, October 14, 2011
Floundering a Little
I am nearly five years into the journey of parenting a child with special needs, and I've learned a hell of a lot. The process of grieving and accepting is well and truly behind me now, but there are new challenges that lay ahead.
I think the thing that plagues me the most is that sometimes, honestly, I don't really know what I think about things. I believe that the opportunity for inclusion should be available to every child, but do I think it's right for my child? I don't know. I expect that when he graduates from high school, there will be resources available for him and for us to help him find something worthwhile to do with his time. But how do I judge what's worthwhile? Do I even have the right to decide for him what an acceptable use of his time is?
I have no reason not to believe that Pacey will ultimately be capable of living on his own to some extent. But I don't know if that's necessarily my goal. It's weird to look ahead and try to figure out who will be responsible for making these decisions. I guess as a parent of a young child you just imagine that at some point, they will be responsible for making their own decisions and you'll have to take a back seat and support those decisions the best you can - hopefully having instilled values in your child that guide them to choose well.
I personally always assumed that I would go to college, I would have a job and I would have a family. And that's what I worked towards. Those goals guided my decision-making and where I focused my energy. I just wonder at what point it will become clear to us what the goals for Pacey's life are, and how much Chris and I will decide those goals versus how much Pacey will be able to advocate for his own desires.
I realize this looks pretty far into the future, but I've been thinking a lot lately about what matters in making decisions about Pacey's education, etc (we have his IEP next week). I have talked about it with my husband, who I believe places more importance on Pacey being happy in his life. That's not to say that Chris would support a lifestyle of aimlessness, but it is his personal goal to make sure that Pacey is financially provided for such that he is not relying on his own earning power to support himself.
I also realize, of course, that there is no guarantee that any child I have will follow a path I envision for them. But it's somehow easier to make assumptions about the end goals in raising a typically- developing child and let it unfold along the way.
I read a post recently in which the author talks about her daughter's experiences thus far in a mainstream classroom and reveals that she wonders sometimes why she tries so hard to fit her square peg into a round hole. And I wonder the same...how do you find the right balance between challenging your child and not underestimating their abilities, with choosing an environment in which they will be happiest and most supported?
This post is a complete ramble and I think reflects the pretty disorganized state of my thoughts on the subject. I do, however, have some very clear hopes for Pacey. I hope that he has good self-esteem and believes in his abilities. I hope that he has companionship outside his family - and honestly, I hope that he has romantic love in his life. I hope that he maintains a great relationship with his sibling(s). I do hope that he is able to enjoy a level of independence and feel like he is in control of his life to a certain extent. I hope that he continues to develop his own interests and finds a sense of community for himself around those interests.
And looking at these hopes - I guess it's clear at this point that I care more about how he feels about his life than what he achieves. Is that wrong? I don't know. Is it acceptable to hold him to a different standard than I do his sister? I don't know. (for right now my main hope for Brighton is that she outgrow this phase of defiance! :)
This is one of the ways that I am most stretched as a parent...I like to plan, to envision and help bring to fruition. It drives me crazy that I can't divine the future for Pacey and it's so hard to take things one year at a time for him. Anyone have thoughts? Parents of kids with Ds or not, I'm interested to know how much you want/try to plan your kids' trajectories...
I think the thing that plagues me the most is that sometimes, honestly, I don't really know what I think about things. I believe that the opportunity for inclusion should be available to every child, but do I think it's right for my child? I don't know. I expect that when he graduates from high school, there will be resources available for him and for us to help him find something worthwhile to do with his time. But how do I judge what's worthwhile? Do I even have the right to decide for him what an acceptable use of his time is?
I have no reason not to believe that Pacey will ultimately be capable of living on his own to some extent. But I don't know if that's necessarily my goal. It's weird to look ahead and try to figure out who will be responsible for making these decisions. I guess as a parent of a young child you just imagine that at some point, they will be responsible for making their own decisions and you'll have to take a back seat and support those decisions the best you can - hopefully having instilled values in your child that guide them to choose well.
I personally always assumed that I would go to college, I would have a job and I would have a family. And that's what I worked towards. Those goals guided my decision-making and where I focused my energy. I just wonder at what point it will become clear to us what the goals for Pacey's life are, and how much Chris and I will decide those goals versus how much Pacey will be able to advocate for his own desires.
I realize this looks pretty far into the future, but I've been thinking a lot lately about what matters in making decisions about Pacey's education, etc (we have his IEP next week). I have talked about it with my husband, who I believe places more importance on Pacey being happy in his life. That's not to say that Chris would support a lifestyle of aimlessness, but it is his personal goal to make sure that Pacey is financially provided for such that he is not relying on his own earning power to support himself.
I also realize, of course, that there is no guarantee that any child I have will follow a path I envision for them. But it's somehow easier to make assumptions about the end goals in raising a typically- developing child and let it unfold along the way.
I read a post recently in which the author talks about her daughter's experiences thus far in a mainstream classroom and reveals that she wonders sometimes why she tries so hard to fit her square peg into a round hole. And I wonder the same...how do you find the right balance between challenging your child and not underestimating their abilities, with choosing an environment in which they will be happiest and most supported?
This post is a complete ramble and I think reflects the pretty disorganized state of my thoughts on the subject. I do, however, have some very clear hopes for Pacey. I hope that he has good self-esteem and believes in his abilities. I hope that he has companionship outside his family - and honestly, I hope that he has romantic love in his life. I hope that he maintains a great relationship with his sibling(s). I do hope that he is able to enjoy a level of independence and feel like he is in control of his life to a certain extent. I hope that he continues to develop his own interests and finds a sense of community for himself around those interests.
And looking at these hopes - I guess it's clear at this point that I care more about how he feels about his life than what he achieves. Is that wrong? I don't know. Is it acceptable to hold him to a different standard than I do his sister? I don't know. (for right now my main hope for Brighton is that she outgrow this phase of defiance! :)
This is one of the ways that I am most stretched as a parent...I like to plan, to envision and help bring to fruition. It drives me crazy that I can't divine the future for Pacey and it's so hard to take things one year at a time for him. Anyone have thoughts? Parents of kids with Ds or not, I'm interested to know how much you want/try to plan your kids' trajectories...
Thursday, October 13, 2011
These Are a Few
Well, it turns out that sequestering ourselves for the afternoon was just the ticket. Everyone has been in much better moods today (including me!)
I have several posts that are actually about Down syndrome-related topics percolating my in brain but nothing coherent enough to get down on 'paper' yet. So in the spirit of celebrating our improved morale, here is a list of things that make me happy, in no particular order:
Impromptu hugs from my kids
Good smelling laundry
Scoring great deals on stuff
Red wine - especially French
Seasonal candy
Unexpected packages in the mail
A stack of unread books on my nightstand
Not having any solo socks left after folding all the laundry
Giving gifts, particularly when it's Just Because
Fleece
My iPhone
My kids actually eating a meal I prepare
Getting feedback from teachers that makes me feel like they appreciate my kids as individuals
Friendships that last over distance and long gaps between visits
My photo wall (a work in progress)
New white cotton socks
Writing this blog
I have several posts that are actually about Down syndrome-related topics percolating my in brain but nothing coherent enough to get down on 'paper' yet. So in the spirit of celebrating our improved morale, here is a list of things that make me happy, in no particular order:
Impromptu hugs from my kids
Good smelling laundry
Scoring great deals on stuff
Red wine - especially French
Seasonal candy
Unexpected packages in the mail
A stack of unread books on my nightstand
Not having any solo socks left after folding all the laundry
Giving gifts, particularly when it's Just Because
Fleece
My iPhone
My kids actually eating a meal I prepare
Getting feedback from teachers that makes me feel like they appreciate my kids as individuals
Friendships that last over distance and long gaps between visits
My photo wall (a work in progress)
New white cotton socks
Writing this blog
Wednesday, October 12, 2011
Out of Office
One of the hardest things about being a stay-at-home-mom is never really having the option of what we call a Mental Health Day in our family. When I was working it meant calling in sick, even if I wasn't physically ill, taking the kids to daycare and just having a day of laying low, napping, reading, maybe getting ahead on a few chores if that's what had been weighing on me.
Anyway, lately I've really been feeling the need for a Mental Health Day. I end every day totally bottomed out, and haven't been waking up refreshed and ready to face another day.
Our schedule for this school year (and I've already explored any other options) is less than ideal. B goes to school two mornings a week from 8:45 to 11:45, and P goes three afternoons from 1:00 - 3:30. The mornings are fine - I get some time with P alone and that's been fun. But then it's a rush to get them home to eat lunch (do all kids eat so slooooooow?) and back out to get P to school. Then it's rush B home, try to get her to nap, inevitably have to wake her up to pick up P, do a couple errands and home to crab our way through the witching hours.
Anyway, it's not the end of the world but I've definitely been feeling like I spend my life rushing them to get ready, eat, get in the car, get out of the car, eat, sleep, back in the car, back out of the car, etc. It's making me grumpy and it's making them grumpy.
This morning Pacey woke up a little snuffly, having finished meds for a sinus infection YESTERDAY. B was a weepy overtired mess all morning and the combination was enough to inspire me to declare a Mental Health Day of sorts. I called Pacey in sick (it's preschool, it won't kill him to miss a day!), we all had a rest and B is still sleeping after 2.5 hours while P plays on the iPad. It's not a day on my own to do whatever I please, but it's pretty darn close and I'll take it. This afternoon the kids will help me bake a dessert for a meeting I'm hosting tonight, we will snuggle up and watch a movie, and tomorrow hopefully will all wake up with a fresh take on life.
Anyway, lately I've really been feeling the need for a Mental Health Day. I end every day totally bottomed out, and haven't been waking up refreshed and ready to face another day.
Our schedule for this school year (and I've already explored any other options) is less than ideal. B goes to school two mornings a week from 8:45 to 11:45, and P goes three afternoons from 1:00 - 3:30. The mornings are fine - I get some time with P alone and that's been fun. But then it's a rush to get them home to eat lunch (do all kids eat so slooooooow?) and back out to get P to school. Then it's rush B home, try to get her to nap, inevitably have to wake her up to pick up P, do a couple errands and home to crab our way through the witching hours.
Anyway, it's not the end of the world but I've definitely been feeling like I spend my life rushing them to get ready, eat, get in the car, get out of the car, eat, sleep, back in the car, back out of the car, etc. It's making me grumpy and it's making them grumpy.
This morning Pacey woke up a little snuffly, having finished meds for a sinus infection YESTERDAY. B was a weepy overtired mess all morning and the combination was enough to inspire me to declare a Mental Health Day of sorts. I called Pacey in sick (it's preschool, it won't kill him to miss a day!), we all had a rest and B is still sleeping after 2.5 hours while P plays on the iPad. It's not a day on my own to do whatever I please, but it's pretty darn close and I'll take it. This afternoon the kids will help me bake a dessert for a meeting I'm hosting tonight, we will snuggle up and watch a movie, and tomorrow hopefully will all wake up with a fresh take on life.
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