Had a great opportunity to get some pictures of K in some good light. They capture what it's like to be with her, I think.
Practically a flip book, huh?
Tuesday, July 30, 2013
Sunday, July 28, 2013
If I were an entrepreneur...
...which I am not, I might consider a career in designing and/or marketing specialized toys and equipment for special needs kids.
Parents are used to be being marketed to. You go in to Babies R Us to register for your first baby, and they give you a list of "must have" items that includes 3 different kinds of strollers, 2 carriers, 3 beds, a wipe warmer, and 6 different kinds of bottles. It's all right there in the store and they try to convince you that you need all of this stuff. Luckily, most of us are smart enough to realize that we don't need all that or poor enough that we can't have all of that. Bottom line is that we have a bunch of choices.
Then along comes a baby with some special needs and you. are. on. your. own. At least in the baby gear department.
Example #1. I first noticed this when looking for something to dampen the noise in the room for K. After searching and searching, I found one pair of noise dampening headphones. They work great, except that they are heavy and cumbersome, especially for a baby with very little head and neck control.
Example #2. Keira has significant motor delays and thus will not be walking for some time. I still have to carry her like a baby because she doesn't have the strength to sit upright. It has been a huge help to have a front-carrier to tote her around or to keep her happy while I'm doing dishes, for example. However, she's getting longer and this poses a problem. My carrier is no longer big enough to support her head. Last weekend I spent a total of 3 hours online. I researched about 50 baby carriers and emailed back and forth with about a dozen companies. I have a special order in for a Mei Tei, the company that seemed to be the best pick in terms of being able to carry a larger child and still provide head support. We'll see.
Example #3. Some babies like the extra sensory input that comes from vibration. The OT has helped us recognize that this is very soothing to Keira sometimes. So, we were told to look for toys that vibrate. Word to the wise: don't google "vibrating toys." You can try, "baby toys that vibrate," like I did, but you won't find anything. I finally found 2 toys from obscure companies, but being as that was all I could find, I ordered both. The first came weeks ago. It's a stuffed bunny (think beanie baby) with a pocket for a battery operated box that vibrates. Ok. Nothing special, but it's vibration is pretty intense and K doesn't really seem to like it. The second toy came the other day. As you can see, it works kind of like a pulsating toothbrush, with an animal like a pencil topper on the end. It was overpriced and not very cute and I'm not sure what you're supposed to do with it...? Frankly, I think it looks a little embarrassing...too much like a "vibrating toy."
Example #4. Weighted blankets. Kids with sensory stuff sometimes like the feel of a weighted blanket. You can by these online. But they tend to be ugly. And expensive. They shouldn't be. It's basically a quilted blanket with pockets of beans or shot or plastic beads. I bought a couple of tube socks and filled them with beans for K. Not cute, but they work.
Example #5. Simple, simple toys. K benefits from toys that give feedback to even the gentlest touch. Remember these? Thank goodness my OT collected these years ago. She's letting us borrow them for as long as we need. I told her I'd promise not to sell them...after I looked to by my own and saw what they were going for on ebay. Good grief. It's hard to find something simple and colorful. The modern day equivalent includes lights and music and a coffee maker, I think. No wonder our kids all have ADHD.
Anyway, all this has been kind of an adventure. It'd be nice if there were some sort of one-stop-shop for these more unusual children's' products. And it'd be nice if the products were affordable. And cute. These "treasure hunts" have required some creativity and thank goodness our OT has lots of ingenuity. I know this is only the beginning. Will I be looking for "baby food" for a child who can't chew solids? Will I be looking for a harnessed car see for a 6 year old? A stroller/wheelchair? So much to learn...
Parents are used to be being marketed to. You go in to Babies R Us to register for your first baby, and they give you a list of "must have" items that includes 3 different kinds of strollers, 2 carriers, 3 beds, a wipe warmer, and 6 different kinds of bottles. It's all right there in the store and they try to convince you that you need all of this stuff. Luckily, most of us are smart enough to realize that we don't need all that or poor enough that we can't have all of that. Bottom line is that we have a bunch of choices.
Then along comes a baby with some special needs and you. are. on. your. own. At least in the baby gear department.
Example #1. I first noticed this when looking for something to dampen the noise in the room for K. After searching and searching, I found one pair of noise dampening headphones. They work great, except that they are heavy and cumbersome, especially for a baby with very little head and neck control.Example #2. Keira has significant motor delays and thus will not be walking for some time. I still have to carry her like a baby because she doesn't have the strength to sit upright. It has been a huge help to have a front-carrier to tote her around or to keep her happy while I'm doing dishes, for example. However, she's getting longer and this poses a problem. My carrier is no longer big enough to support her head. Last weekend I spent a total of 3 hours online. I researched about 50 baby carriers and emailed back and forth with about a dozen companies. I have a special order in for a Mei Tei, the company that seemed to be the best pick in terms of being able to carry a larger child and still provide head support. We'll see.
Example #3. Some babies like the extra sensory input that comes from vibration. The OT has helped us recognize that this is very soothing to Keira sometimes. So, we were told to look for toys that vibrate. Word to the wise: don't google "vibrating toys." You can try, "baby toys that vibrate," like I did, but you won't find anything. I finally found 2 toys from obscure companies, but being as that was all I could find, I ordered both. The first came weeks ago. It's a stuffed bunny (think beanie baby) with a pocket for a battery operated box that vibrates. Ok. Nothing special, but it's vibration is pretty intense and K doesn't really seem to like it. The second toy came the other day. As you can see, it works kind of like a pulsating toothbrush, with an animal like a pencil topper on the end. It was overpriced and not very cute and I'm not sure what you're supposed to do with it...? Frankly, I think it looks a little embarrassing...too much like a "vibrating toy."
Example #4. Weighted blankets. Kids with sensory stuff sometimes like the feel of a weighted blanket. You can by these online. But they tend to be ugly. And expensive. They shouldn't be. It's basically a quilted blanket with pockets of beans or shot or plastic beads. I bought a couple of tube socks and filled them with beans for K. Not cute, but they work.
Example #5. Simple, simple toys. K benefits from toys that give feedback to even the gentlest touch. Remember these? Thank goodness my OT collected these years ago. She's letting us borrow them for as long as we need. I told her I'd promise not to sell them...after I looked to by my own and saw what they were going for on ebay. Good grief. It's hard to find something simple and colorful. The modern day equivalent includes lights and music and a coffee maker, I think. No wonder our kids all have ADHD.
Anyway, all this has been kind of an adventure. It'd be nice if there were some sort of one-stop-shop for these more unusual children's' products. And it'd be nice if the products were affordable. And cute. These "treasure hunts" have required some creativity and thank goodness our OT has lots of ingenuity. I know this is only the beginning. Will I be looking for "baby food" for a child who can't chew solids? Will I be looking for a harnessed car see for a 6 year old? A stroller/wheelchair? So much to learn...
Losing Perspective
To my surprise, there are some drawbacks to resuming a sense of normalcy in the Hall house.
Yesterday, we undertook a family project in our back yard. Our first endeavor of this sort since having Keira, we simply wanted to remove all of the debris on the east side of our house, haul it to the dump, and move the wood pile.
Pretty simple, theoretically, but Jeff and I bickered all day. I think he's too inefficient and unrealistic and opinionated. He thinks I'm too hurried and unrealistic and opinionated. Sigh. This is nothing new, really. But it is something that we hadn't done in a long, long time. "They" say that the thing you most love about your spouse is the thing you least love about your spouse. He's the calm and easy going to my hurried and anxious. I'm the "just get it done" to his "trust the process."Sometimes this gets very frustrating.
We've been lucky. For many parents, transitioning to a life with a sick or delayed child leads to major depression for one or both spouses and often divorce. Jeff and I have felt, I'd say, closer in many ways. When apologizing to him this morning about being so easily annoyed yesterday, I told him that I hate feeling so scattered and anxious. It told him that, ironically, I feel like I do better, in some ways, when I'm in so-called crisis. He pointed out that in those circumstances, it's much easier to keep the main thing the main thing.
True. When Keira was born, and for the first few months, it was like we were forging a new trail. Everything, in a sense, was slow and steady and deliberate. Now, as things seem to be getting more "normal," and particularly as I try to add things back into my life that I had eliminated (cooking, housework, crafts, dance, etc), it's like I've gotten back on a 6 lane freeway. It's exhilarating to be going fast again and to be somewhere familiar, and to have some destinations that are recognizable to me, but everything going on around me is too much to take in. I can't possibly manage everything.
All that harriedness was commonplace for me before I was Keira's mom. I like to be involved in lots of things and thought that maintaining balance of these activities was the right goal. When she came, the resulting necessity of buckling down at home, simplifying life, and focusing on the most important things was a real blessing. Even if it meant eliminating things I loved. In fact, I wonder if that wasn't a look at how I/we should be living all of the time. There was a purity, even a holiness, to that period of time that I don't want to lose sight of. For Jeff and I, it involved giving each other a wider margin of error. We gave each other loads of grace and understanding because we knew so well that the other was in a very vulnerable state and doing the best he could. But the truth is, and the perspective that we are prone to lose is, that we are vulnerable and doing the best we can on most days, regardless.
So, for weeks, I've been getting excited about "getting back to normal" but have also been feeling somewhat trepidatious about it. Yesterday gave me some things to think about.
Must be time to delete my to do list again.
Yesterday, we undertook a family project in our back yard. Our first endeavor of this sort since having Keira, we simply wanted to remove all of the debris on the east side of our house, haul it to the dump, and move the wood pile.
Pretty simple, theoretically, but Jeff and I bickered all day. I think he's too inefficient and unrealistic and opinionated. He thinks I'm too hurried and unrealistic and opinionated. Sigh. This is nothing new, really. But it is something that we hadn't done in a long, long time. "They" say that the thing you most love about your spouse is the thing you least love about your spouse. He's the calm and easy going to my hurried and anxious. I'm the "just get it done" to his "trust the process."Sometimes this gets very frustrating.
We've been lucky. For many parents, transitioning to a life with a sick or delayed child leads to major depression for one or both spouses and often divorce. Jeff and I have felt, I'd say, closer in many ways. When apologizing to him this morning about being so easily annoyed yesterday, I told him that I hate feeling so scattered and anxious. It told him that, ironically, I feel like I do better, in some ways, when I'm in so-called crisis. He pointed out that in those circumstances, it's much easier to keep the main thing the main thing.
True. When Keira was born, and for the first few months, it was like we were forging a new trail. Everything, in a sense, was slow and steady and deliberate. Now, as things seem to be getting more "normal," and particularly as I try to add things back into my life that I had eliminated (cooking, housework, crafts, dance, etc), it's like I've gotten back on a 6 lane freeway. It's exhilarating to be going fast again and to be somewhere familiar, and to have some destinations that are recognizable to me, but everything going on around me is too much to take in. I can't possibly manage everything.
All that harriedness was commonplace for me before I was Keira's mom. I like to be involved in lots of things and thought that maintaining balance of these activities was the right goal. When she came, the resulting necessity of buckling down at home, simplifying life, and focusing on the most important things was a real blessing. Even if it meant eliminating things I loved. In fact, I wonder if that wasn't a look at how I/we should be living all of the time. There was a purity, even a holiness, to that period of time that I don't want to lose sight of. For Jeff and I, it involved giving each other a wider margin of error. We gave each other loads of grace and understanding because we knew so well that the other was in a very vulnerable state and doing the best he could. But the truth is, and the perspective that we are prone to lose is, that we are vulnerable and doing the best we can on most days, regardless.
So, for weeks, I've been getting excited about "getting back to normal" but have also been feeling somewhat trepidatious about it. Yesterday gave me some things to think about.
Must be time to delete my to do list again.
Wednesday, July 17, 2013
Fishing Derbies, Vacations, Proximal Stability, and Ordinariness
Most of you parents probably know the situation: You go with your kids to the park or the pool or Mommy n Me gymnastics and you start making small talk with the other moms. Pretty soon you're asking and answering and comparing everything about your little ones. How much did he weigh? Epidural or natural? How many dirty diapers a day? How many teeth? How old was she when she slept through the night? What program do you use? Does he crawl yet? Walk yet? Read yet? How many words does she know in sign? English? Spanish? Portuguese?
For the most part I've enjoyed the camaraderie of these types of conversations. Perhaps I was even a little smug. For better or worse I thought I had a one up on many moms because I had this scientific knowledge of what was "developmentally appropriate" for kids at certain ages and, for the most part, my boys were coasting along just fine. However, I also recognize that these conversations are at least a wee bit competitive.
Jeff notices this as well. Particularly if I come home from a mommy get together thinking (in spite of my aforementioned "expertise")that one of our sons may be constipated, needs a hearing test, or is dyslexic because he's not reading prior to kindergarten. I exaggerate. A little. I've never been much of a fisherman (fisherwoman?), but Jeff lent me a this good analogy. He likened these conversations (Competitions? "Convertitions?" Ha!) to a fishing derby.
Then there was K. And I dropped out of the derby. Or at least I've tried to. I know that I cannot, should not, compare my little girl to her same-aged peers. I must only compare her to herself, which is something I remind myself of every day. It's a challenge, but it's getting easier. For example, I can go to the Rec Center where every other woman is either 8 months pregnant or has a child under 12 months and not feel like they are aggressively flaunting their healthy children. Yay me.
We were blessed to be able to go on a short vacation to Waldport, OR for a few days. At the last minute, I decided to invite a colleague/friend and his family along on our trip. So glad I did. We had a wonderful time and I was able to relate to these friends in way that I'm not able to with any other parent. Their first child, about 3 now, has Downs Syndrome. Though it didn't feel like your typical "fishing derby, " thank God, we were able to relate to each other about therapies, alternative treatments, life changes, expectations, and the feeling you get when your friends' kids are meeting developmental milestones like they're going out of style. Thank you, Carpenters.
Waldport was perfect. Forest. Beaches. Clamming. Crabbing. Leisure. It wasn't hot or crowded there. Keira did great (except that I had to hold her during much of the drive). She enjoyed the breeze on the beach, smiling, then having to catch her breath. She tolerated everything, including the two toddlers there, with apparent ease. I found a few tricks that helped keep her regulated when we went into crazier environments (adult ear plugs cut in half, wearing her on my chest, laying her on the seat in a booth, facing the back rest, with a bright colored sticker to focus on in front of her). Since we've been home, my mom hasn't noticed her startling at all. We hope to go back there again.
Last week we celebrated, celebrated when Keira got sick. She had a fever and went to the doctor who told us she had an ear infection. I held my breath and then she got better. Just like that. Sick just like any old baby sick. No hospital. No ICU. No emergency. Milestones!!
Our OT and PT both believe that Keira has begun a new developmental phase again. She's getting so much stronger. She holds her head up for longer and even looks back and forth. She's rolling more and more, usually from her back to her side or her side to her belly. She's reaching and grabbing, sometimes, for toys or faces. She lays on the floor and kicks, bicycling her legs, alternating side to side. These things are all so hopeful in terms of her eventually being able to sit upright, walk, etc. So exciting, and scary to hope at the same time, too.
The OT and PT are particularly encouraged because K is using more core strength and less of her superficial muscles (did you know there was a difference?). The OT's mantra is coming to fruition. "Core stability for distal mobility," she always says. It's so true. Apparently it's really hard to play the piano, for example, if you can't hold up your head or your torso. If you can't sit upright, you probably don't have the muscles to help you raise your arms or the muscles in your arms to control your fingering as precisely as necessary. So what we are beginning to see is that now that K has more control in her stomach, back, and neck, she reaches more, kicks more, and looks around more. Hopefully, eventually, this will even extend to her seeing better, playing with toys, and crawling.
In the past couple of weeks, I've been a little restless, I think. Things are feeling, dare I say, normal. I have lots of help, though it's mostly because they want to be here, and I surely appreciate it, and not so much because I need it. I'm making dinners and doing some chores and working almost as much as I did before Keira was born. I'm enjoying watching the boys enjoy their summer, both of them seeming to be in new developmental phases of their own.
A few times I've found myself without anything pressing to get done. That freaks me out a little. Which is probably why I have started an art project, begun thinking about Keira's first birthday party, made Christmas lists for the boys, worked on photo albums, and have been contemplating participating in the Living Christmas Tree and teaching dance this fall.
Eek. Those are all things that I love to do. They make me feel like me. Or at least they did before Keira was born. It's exciting that I may be getting back to the ordinariness of life, but I don't want to get in over my head. I need to pace myself. I really don't know what is around the corner or what Keira's needs will be and I could really regret filling up my schedule again. I suppose it's continually a balance (which every parent has to do, really), between a) being available and around and ensuring that I do not become overburdened or tired, and b) diving back into life as I have known it and doing what needs to be done to make Keira a part of it, rather than standing back from life as I know it for fear that Keira can't handle it, which, in turn, would make us more distant from the community that supports us.
For the most part I've enjoyed the camaraderie of these types of conversations. Perhaps I was even a little smug. For better or worse I thought I had a one up on many moms because I had this scientific knowledge of what was "developmentally appropriate" for kids at certain ages and, for the most part, my boys were coasting along just fine. However, I also recognize that these conversations are at least a wee bit competitive.
Jeff notices this as well. Particularly if I come home from a mommy get together thinking (in spite of my aforementioned "expertise")that one of our sons may be constipated, needs a hearing test, or is dyslexic because he's not reading prior to kindergarten. I exaggerate. A little. I've never been much of a fisherman (fisherwoman?), but Jeff lent me a this good analogy. He likened these conversations (Competitions? "Convertitions?" Ha!) to a fishing derby.
Then there was K. And I dropped out of the derby. Or at least I've tried to. I know that I cannot, should not, compare my little girl to her same-aged peers. I must only compare her to herself, which is something I remind myself of every day. It's a challenge, but it's getting easier. For example, I can go to the Rec Center where every other woman is either 8 months pregnant or has a child under 12 months and not feel like they are aggressively flaunting their healthy children. Yay me.
We were blessed to be able to go on a short vacation to Waldport, OR for a few days. At the last minute, I decided to invite a colleague/friend and his family along on our trip. So glad I did. We had a wonderful time and I was able to relate to these friends in way that I'm not able to with any other parent. Their first child, about 3 now, has Downs Syndrome. Though it didn't feel like your typical "fishing derby, " thank God, we were able to relate to each other about therapies, alternative treatments, life changes, expectations, and the feeling you get when your friends' kids are meeting developmental milestones like they're going out of style. Thank you, Carpenters.
Waldport was perfect. Forest. Beaches. Clamming. Crabbing. Leisure. It wasn't hot or crowded there. Keira did great (except that I had to hold her during much of the drive). She enjoyed the breeze on the beach, smiling, then having to catch her breath. She tolerated everything, including the two toddlers there, with apparent ease. I found a few tricks that helped keep her regulated when we went into crazier environments (adult ear plugs cut in half, wearing her on my chest, laying her on the seat in a booth, facing the back rest, with a bright colored sticker to focus on in front of her). Since we've been home, my mom hasn't noticed her startling at all. We hope to go back there again.
Our OT and PT both believe that Keira has begun a new developmental phase again. She's getting so much stronger. She holds her head up for longer and even looks back and forth. She's rolling more and more, usually from her back to her side or her side to her belly. She's reaching and grabbing, sometimes, for toys or faces. She lays on the floor and kicks, bicycling her legs, alternating side to side. These things are all so hopeful in terms of her eventually being able to sit upright, walk, etc. So exciting, and scary to hope at the same time, too.
The OT and PT are particularly encouraged because K is using more core strength and less of her superficial muscles (did you know there was a difference?). The OT's mantra is coming to fruition. "Core stability for distal mobility," she always says. It's so true. Apparently it's really hard to play the piano, for example, if you can't hold up your head or your torso. If you can't sit upright, you probably don't have the muscles to help you raise your arms or the muscles in your arms to control your fingering as precisely as necessary. So what we are beginning to see is that now that K has more control in her stomach, back, and neck, she reaches more, kicks more, and looks around more. Hopefully, eventually, this will even extend to her seeing better, playing with toys, and crawling.
In the past couple of weeks, I've been a little restless, I think. Things are feeling, dare I say, normal. I have lots of help, though it's mostly because they want to be here, and I surely appreciate it, and not so much because I need it. I'm making dinners and doing some chores and working almost as much as I did before Keira was born. I'm enjoying watching the boys enjoy their summer, both of them seeming to be in new developmental phases of their own.
 |
| Liam is big enough and mature enough to be trusted with Keira duties for 5 or 10 minutes at a time now! |
A few times I've found myself without anything pressing to get done. That freaks me out a little. Which is probably why I have started an art project, begun thinking about Keira's first birthday party, made Christmas lists for the boys, worked on photo albums, and have been contemplating participating in the Living Christmas Tree and teaching dance this fall.
 |
| Lazy summer morning. |
Sunday, July 14, 2013
It's been a while...
The following is straight from the blog called "Our Stroke of Luck" by Jamie Krug. I could have written it myself...
I haven’t written in over a week – not for a lack of things to write about as there is always something going on around here – but out of fear. Things are changing a lot – slowly but significantly, and I’m just not sure what that means for me, for my family, for my life, for this forum. This blog has been a place of solace for me, a place to feel surrounded while still wrestling with my solitude. It’s a place where I think people come to read, to listen, to pity, to relate, to appreciate their own lives, to understand mine, to support, to understand, to share, to just…be there (be here?).
I don’t know where this blog goes if I’m not wallowing, if I’m not feeling lonely, if it’s a day without a major struggle…if there is no blood, no sweat (there are always tears). Is anyone still out there? Do I need the drama, the stacked odds, the tragedy to make this worth reading?More to come...
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