I’ve just discovered that some people have been having trouble posting comments on this blog. I apologize and am trying to figure out why this is happening. I am very new to this whole blogging thing and really have no idea why this is happening. I rechecked the settings for the blog and it should be allowing all comments, even anonymous ones. I did a little more looking around and it sounds like this may have something to do with a problem blogger is having with word verification. Here’s what blogger said in their known issues help section:
“The word verification form is currently failing to load for some users. As a temporary workaround, you can disable word verification from the Settings Comments tab. We're working on a fix now, and apologize for the inconvenience. — latest update on Monday, February 23, 2009”
So temporarily I’ve disabled the word verification setting and hopefully this should resolve the issue. Please email me if you attempt to comment and the problem persists.
I want to thank one fellow blogger in particular for bringing this matter to my attention. Failing another way to reach me (I didn’t have my email on this blog at that time), she posted a notice to me on her blog http://signsoffaithbook.com/2009/02/23/dear-special-insights-aka-kaias-mom/ I’ve mentioned before how much I greatly enjoy and admire her writing. Seeing her mention my blog on her blog was kind of like getting a shout out during an actor’s acceptance speech at the Oscars.
I am really enjoying the online community I am finding of women bloggers. I'm loving reading all your blogs and getting feedback from you. I never imagined finding this kind of support through blogging. So, let the comments commence!
Friday, February 27, 2009
Wednesday, February 25, 2009
Required reading
A close friend of my sister’s gave me this book (along with several other helpful books) when Kaia was just a newborn. I don’t think I’ve read a more honest account of the first year of new motherhood. I related to so much in this book. I think it should be required reading for any new mother. I absolutely love the complexity of the author – the juxtaposition of her love of Jesus with her adamant defense of a woman’s right to choose and her hatred of Bush. I love people, like her, that don’t buy into the world as a black and white place.
I had read so many pregnancy books while pregnant and so many “how to get your child to be the perfect sleeper” books after Kaia was born. None came close to the helpfulness of this book. The author is brutally honest about the downright torture of sleep deprivation accompanying new motherhood. No one else told things as straight up as she did. I remember people cooing at Kaia and telling me over and over again to cherish those times. I wanted to slap them because I was so exhausted. This book made me feel okay about that. I highly recommend everyone purchase this book and give it as a baby shower gift. Trust me, the baby will outgrow those cute outfits in a matter of months but this book will be a gift to the new mom in a lasting and meaningful way. The only thing better would be the gift that a gentleman from the author’s church gave to her: showing up at a new mom’s door and offering to clean her bathroom.
I had read so many pregnancy books while pregnant and so many “how to get your child to be the perfect sleeper” books after Kaia was born. None came close to the helpfulness of this book. The author is brutally honest about the downright torture of sleep deprivation accompanying new motherhood. No one else told things as straight up as she did. I remember people cooing at Kaia and telling me over and over again to cherish those times. I wanted to slap them because I was so exhausted. This book made me feel okay about that. I highly recommend everyone purchase this book and give it as a baby shower gift. Trust me, the baby will outgrow those cute outfits in a matter of months but this book will be a gift to the new mom in a lasting and meaningful way. The only thing better would be the gift that a gentleman from the author’s church gave to her: showing up at a new mom’s door and offering to clean her bathroom.
Tuesday, February 24, 2009
Preschool visit part II
Yesterday we visited the church preschool. The beginning of the visit was uneventful. Kaia didn’t seem too impressed or interested in any of it; she just wanted me to carry her around. When I’d set her standing on the floor, she would cling to my legs. After a while, though, she decided she wanted to walk and did so quite well with one hand held. (I was very proud of her!) I'm hoping that by the time she will start preschool next fall she will be walking independently well. I know they would not have the patience or staffing to walk slowly with Kaia holding her hand. They'd throw her in the big six kid stroller and wheel her around everywhere. She'd never get the chance or motivation to walk anywhere. But, I digress. Back to the tour. The preschool director gave us the full tour and we saw a couple of the older classrooms using the big muscle rooms. Kaia was fascinated with watching the children race around and climb over all the equipment. She stood on her own and got very excited when one boy started bouncing a ball. She was smiling at him. I was happy to see her responding this way because it gave me hope that she may actually get something out of the experience of attending; even if it is just delighting in watching or interacting with a typical peer.
Two little girls came over. Their class had passed us in the hall on the way to the gym. They had said hello to Kaia while they passed her walking. I noticed that they, like all the kids who had really noticed Kaia, were staring at Kaia’s lip and nose. I prepared myself for the question. They finally asked, “What’s that?” pointing to Kaia’s incision from cleft surgery. I replied, “That’s her beauty line, her special beauty line.” They looked a little confused but accepted that answer. Then the girl asked, “Why isn’t she doing anything?” I thought, if they only knew just how much it was that she was doing, standing on her own (!), and taking it all in. I just replied that she was watching them all play.
The director said after they had moved on what a great way that was to explain her cleft. Paul and I had decided following her surgery to call it that. We got sick of saying “her incision”, or even worse, her “scar”. I hated that word. We decided to turn it into something positive. I know that other people may not consider it a beauty line. But we do. And I want her to grow up hearing from her parents how beautiful every single part of her is. We honestly don’t even see her beauty line as being different. We just see our little girl, our Kaia. Today was a reminder to me that the world doesn’t. Kids see what’s different, and they will ask. They will probably tease her as she gets older. It makes me very sad that our little girl will have to endure that. It doesn’t matter what I do to try to protect her from it, if I try to put her in a Christian preschool that I would hope would be more loving. People, kids especially, are going to focus on what makes her different. I’m sure many will be cruel. I wish I could make that all go away. I wish I could make the questions and comments stop. But I can’t. I feel bad that I can’t protect Kaia from that.
Adults focus in a different way. They always couch their curiosity in a question. “When will she have her next surgery?” they ask. I’m not sure how to answer them. The truth is that we don’t know if she will have more surgery. But if I tell them that, they assume and ask if it’s a question of insurance, if because it’s all cosmetic from here on out, that the insurance won’t cover it. I’ve explained in several cases that no, that isn’t the issue. Insurance will cover everything. A look of confusion washes over their faces at that point. If it isn’t a question of money, why wouldn’t we have the surgery for her? The normal routine is to have the next surgery at around 4 years of age, before the child enters school. The purpose is to normalize the appearance in an attempt to prevent psychological impact. We just don’t know yet how much it will matter to Kaia that she looks different. We don’t know where she will be at cognitively. We figure, if she isn’t aware of the difference, then exactly for whom are we doing the surgery? Is it really for her or is it for everyone else? Is the sole purpose to make everyone else more comfortable with her appearance? If that’s the case, that’s a lot to put a little girl through for what I think is a ridiculous reason. People have tried to argue with us about this. Paul advised me to stop trying to explain. He said, “just tell them she’s scheduled to have the surgery when she’s 4 and leave it at that.”
Last week Kaia had a team meeting at the craniofacial center. We brought up our uncertainty about future surgeries when they started discussing the expected timeline for all the anticipated surgeries and orthodontia. Her plastic surgeon brought up a viewpoint at her team meeting that I hadn’t given a lot of consideration. It had crossed my mind, but not to the extent that he explained. He said that all the research shows that people will treat someone with a different appearance differently, so much so that their opportunities in life can be seriously diminished. This doesn’t surprise me. I actually did a research project in college that examined how obesity was correlated with job interview perception and subsequent job offers. The same principle applies to kids in the classroom. Apparently there are studies that show how much more attention teachers pay to kids with an attractive appearance. Again, this isn’t so surprising when you think about it. But does this really justify plastic surgery? People may feel differently because it’s surgery to “repair” a birth defect, as opposed to surgery to mold appearance to a societal ideal. But really it’s the same thing when it comes down to it. If her oral structures are functional and the only reason for surgery is cosmetic, it’s the same to me as a boob or a nose job.
Maybe I’m in denial or maybe we’ll feel differently over time. Her first surgery was horrible. For her and for us. The last thing I want to think about is how many more times we’ll all have to go through that again. What I know for sure is that we will consider everything for our daughter. We agonize over every treatment decision for her. We’re not going to take this lightly. We’ll consider all the benefits and risks. All the pain she’ll have to endure either way – physical and psychological. So, if you are a friend or family member, please stop asking about her future surgeries. I know that sometimes you are asking from a place of love and concern. But trust that we will make the right decision for our daughter. What we need most is your love and support. The rest of the world may focus on her cleft. We really hope you won't.
Two little girls came over. Their class had passed us in the hall on the way to the gym. They had said hello to Kaia while they passed her walking. I noticed that they, like all the kids who had really noticed Kaia, were staring at Kaia’s lip and nose. I prepared myself for the question. They finally asked, “What’s that?” pointing to Kaia’s incision from cleft surgery. I replied, “That’s her beauty line, her special beauty line.” They looked a little confused but accepted that answer. Then the girl asked, “Why isn’t she doing anything?” I thought, if they only knew just how much it was that she was doing, standing on her own (!), and taking it all in. I just replied that she was watching them all play.
The director said after they had moved on what a great way that was to explain her cleft. Paul and I had decided following her surgery to call it that. We got sick of saying “her incision”, or even worse, her “scar”. I hated that word. We decided to turn it into something positive. I know that other people may not consider it a beauty line. But we do. And I want her to grow up hearing from her parents how beautiful every single part of her is. We honestly don’t even see her beauty line as being different. We just see our little girl, our Kaia. Today was a reminder to me that the world doesn’t. Kids see what’s different, and they will ask. They will probably tease her as she gets older. It makes me very sad that our little girl will have to endure that. It doesn’t matter what I do to try to protect her from it, if I try to put her in a Christian preschool that I would hope would be more loving. People, kids especially, are going to focus on what makes her different. I’m sure many will be cruel. I wish I could make that all go away. I wish I could make the questions and comments stop. But I can’t. I feel bad that I can’t protect Kaia from that.
Adults focus in a different way. They always couch their curiosity in a question. “When will she have her next surgery?” they ask. I’m not sure how to answer them. The truth is that we don’t know if she will have more surgery. But if I tell them that, they assume and ask if it’s a question of insurance, if because it’s all cosmetic from here on out, that the insurance won’t cover it. I’ve explained in several cases that no, that isn’t the issue. Insurance will cover everything. A look of confusion washes over their faces at that point. If it isn’t a question of money, why wouldn’t we have the surgery for her? The normal routine is to have the next surgery at around 4 years of age, before the child enters school. The purpose is to normalize the appearance in an attempt to prevent psychological impact. We just don’t know yet how much it will matter to Kaia that she looks different. We don’t know where she will be at cognitively. We figure, if she isn’t aware of the difference, then exactly for whom are we doing the surgery? Is it really for her or is it for everyone else? Is the sole purpose to make everyone else more comfortable with her appearance? If that’s the case, that’s a lot to put a little girl through for what I think is a ridiculous reason. People have tried to argue with us about this. Paul advised me to stop trying to explain. He said, “just tell them she’s scheduled to have the surgery when she’s 4 and leave it at that.”
Last week Kaia had a team meeting at the craniofacial center. We brought up our uncertainty about future surgeries when they started discussing the expected timeline for all the anticipated surgeries and orthodontia. Her plastic surgeon brought up a viewpoint at her team meeting that I hadn’t given a lot of consideration. It had crossed my mind, but not to the extent that he explained. He said that all the research shows that people will treat someone with a different appearance differently, so much so that their opportunities in life can be seriously diminished. This doesn’t surprise me. I actually did a research project in college that examined how obesity was correlated with job interview perception and subsequent job offers. The same principle applies to kids in the classroom. Apparently there are studies that show how much more attention teachers pay to kids with an attractive appearance. Again, this isn’t so surprising when you think about it. But does this really justify plastic surgery? People may feel differently because it’s surgery to “repair” a birth defect, as opposed to surgery to mold appearance to a societal ideal. But really it’s the same thing when it comes down to it. If her oral structures are functional and the only reason for surgery is cosmetic, it’s the same to me as a boob or a nose job.
Maybe I’m in denial or maybe we’ll feel differently over time. Her first surgery was horrible. For her and for us. The last thing I want to think about is how many more times we’ll all have to go through that again. What I know for sure is that we will consider everything for our daughter. We agonize over every treatment decision for her. We’re not going to take this lightly. We’ll consider all the benefits and risks. All the pain she’ll have to endure either way – physical and psychological. So, if you are a friend or family member, please stop asking about her future surgeries. I know that sometimes you are asking from a place of love and concern. But trust that we will make the right decision for our daughter. What we need most is your love and support. The rest of the world may focus on her cleft. We really hope you won't.
Monday, February 23, 2009
Preschool
Kaia and I toured a preschool today. It went okay. I’m torn about this subject because I don’t know where she will be at developmentally in six months, or how I’ll feel about letting her go for two to four hours at a whack, but I figure it’s better to plan now and have the option open next fall than put it off. Otherwise, we may find ourselves in a situation where I’d like to have her in a preschool setting and not be able to find one that has an opening.
My main interest in sending Kaia to preschool is for her to have the opportunity to see typical peers playing and to interact with them, as well as to give me a break. I also think it’s a gift for the other kids to see and interact with Kaia. As I’ve mentioned in other posts, Kaia has never really been outside of our care for any length of time. Grandma and Grandpa (who visit from MN) watch her when they are in town to give us a chance to have date nights and we have utilized a parents night out program a few times for a couple hours at a time. That’s it. So I’m pretty nervous about sending her to a preschool but I also know that there are benefits for her and me. I can’t even imagine what four hours at a stretch to myself would be like anymore. I could study for class, go for a run (and even shower afterward), go shopping in peace and be able to put everything away once home - the possibilities honestly seem endless.
Originally I had been looking at co-op preschools. If you haven’t heard of these, they are preschools in which parents share a vested interest in teaching. Locally, there are two options for us. Both offer two hours, twice a week, 9am-ish to 11am-ish. Both require parental involvement two or four classes per month. That means ¼ to ½ of the time Kaia would be in preschool I would be there with her. They also require parental time commitment in the way of initial training and occasional cleaning. One of my biggest fears is that if I send Kaia to preschool she may be left sitting in a corner, in a w-sit, easily forgotten. Because of this, I figured co-op would be a great option since I’d actually be there to make sure that didn’t happen. However, it would also mean I wouldn’t get the break I’m really looking forward to with this whole preschool thing. For comparison purposes, co-op is also the same price as other options. One of Kaia’s therapists also pointed out that since sometimes I’d remain with Kaia at the co-op preschool and sometimes not, it may be more confusing and difficult for her when I don’t stay.
I also discovered a four hour, one day a week option through a local church. I am hesitant about Kaia’s ability (and mine) to tolerate being separated for a four hour stretch. They also feed the kids lunch there. I worry about her ability to eat in a highly distractible environment. They have the kids sit at a toddler table in little toddler chairs. Kaia’s never eaten outside of a highchair. But, it’s only one time a week. If she doesn’t eat well, I can feed her when we get home. It may even be good for her to observe typical peers eating. They have a 2 year old classroom which has a 10 to 2 ratio; but after speaking with the director and explaining my fears, she suggested we consider the option of putting Kaia in the 18 month classroom (their youngest classroom) which has an 8 to 2 ratio. The kids in that class wouldn’t be that much younger than Kaia - as little as 6 weeks younger since the cutoff for the two year old classroom is Aug 1st and Kaia turns two June 22nd. The director also said if we find that 4 hours is just too long at first, we could arrange to have me pick Kaia up early, after two or three hours.
Whatever option we choose will mean that at least one of Kaia’s therapists will have to see her while she is at preschool. I’m not too hot on this because it will mean we won’t get to observe the therapy session and have that first-hand knowledge of what to implement with Kaia, but it will also mean we won’t have to try to cram in that therapy session on another day. Since Kaia is now getting therapy 6(!) times a week, I don’t even know if that would be possible.
Do you send your child with special needs to a typical preschool or parents/mothers day out program? What has been your experience? If you had any of the same fears as me, how did you deal with them or how were they resolved? I have much more to write about our visit today but Kaia is waking from her nap so this must be continued later…
My main interest in sending Kaia to preschool is for her to have the opportunity to see typical peers playing and to interact with them, as well as to give me a break. I also think it’s a gift for the other kids to see and interact with Kaia. As I’ve mentioned in other posts, Kaia has never really been outside of our care for any length of time. Grandma and Grandpa (who visit from MN) watch her when they are in town to give us a chance to have date nights and we have utilized a parents night out program a few times for a couple hours at a time. That’s it. So I’m pretty nervous about sending her to a preschool but I also know that there are benefits for her and me. I can’t even imagine what four hours at a stretch to myself would be like anymore. I could study for class, go for a run (and even shower afterward), go shopping in peace and be able to put everything away once home - the possibilities honestly seem endless.
Originally I had been looking at co-op preschools. If you haven’t heard of these, they are preschools in which parents share a vested interest in teaching. Locally, there are two options for us. Both offer two hours, twice a week, 9am-ish to 11am-ish. Both require parental involvement two or four classes per month. That means ¼ to ½ of the time Kaia would be in preschool I would be there with her. They also require parental time commitment in the way of initial training and occasional cleaning. One of my biggest fears is that if I send Kaia to preschool she may be left sitting in a corner, in a w-sit, easily forgotten. Because of this, I figured co-op would be a great option since I’d actually be there to make sure that didn’t happen. However, it would also mean I wouldn’t get the break I’m really looking forward to with this whole preschool thing. For comparison purposes, co-op is also the same price as other options. One of Kaia’s therapists also pointed out that since sometimes I’d remain with Kaia at the co-op preschool and sometimes not, it may be more confusing and difficult for her when I don’t stay.
I also discovered a four hour, one day a week option through a local church. I am hesitant about Kaia’s ability (and mine) to tolerate being separated for a four hour stretch. They also feed the kids lunch there. I worry about her ability to eat in a highly distractible environment. They have the kids sit at a toddler table in little toddler chairs. Kaia’s never eaten outside of a highchair. But, it’s only one time a week. If she doesn’t eat well, I can feed her when we get home. It may even be good for her to observe typical peers eating. They have a 2 year old classroom which has a 10 to 2 ratio; but after speaking with the director and explaining my fears, she suggested we consider the option of putting Kaia in the 18 month classroom (their youngest classroom) which has an 8 to 2 ratio. The kids in that class wouldn’t be that much younger than Kaia - as little as 6 weeks younger since the cutoff for the two year old classroom is Aug 1st and Kaia turns two June 22nd. The director also said if we find that 4 hours is just too long at first, we could arrange to have me pick Kaia up early, after two or three hours.
Whatever option we choose will mean that at least one of Kaia’s therapists will have to see her while she is at preschool. I’m not too hot on this because it will mean we won’t get to observe the therapy session and have that first-hand knowledge of what to implement with Kaia, but it will also mean we won’t have to try to cram in that therapy session on another day. Since Kaia is now getting therapy 6(!) times a week, I don’t even know if that would be possible.
Do you send your child with special needs to a typical preschool or parents/mothers day out program? What has been your experience? If you had any of the same fears as me, how did you deal with them or how were they resolved? I have much more to write about our visit today but Kaia is waking from her nap so this must be continued later…
Monday, February 16, 2009
Flying solo
I gotta say it - I’m proud of myself. The weekend before last I flew solo with Kaia from Indianapolis to Manchester, NH via La Guardia. Anyone who has ever traveled solo with a baby knows what a feat this is. Kaia and I expended this effort to attend my big sister’s birthday party. It’s a girl party to which men are not invited nor welcome so I didn’t have many options.
I do have to admit that by the end of it all I was exhausted. Really, really exhausted. I hadn’t been that tired since Kaia’s early months. I had to wake up at 3:45am on Friday in order to leave the house by 5:30am to arrive at the airport by 6am for a 7am departure. I didn’t get to bed until after midnight the night before. So already I was exhausted. Of course Kaia doesn’t sleep well the first couple days of vacation in a strange environment. Add to that we were staying in my sister’s unfinished basement (her house was packed to the gills with guests) which was a little (actually quite a bit) on the chilly side. I had Kaia wearing a long sleeve turtleneck shirt, pj pants, thick socks, a flannel footie sleeper, and her sleep sack, yet her little hands were still cold as icicles. I finally persuaded my sister to allow us to use a space heater.
Kaia nursed for 50 minutes on Friday night before finally dropping off at 10pm. Then she woke up when I laid her in the borrowed playpen and screamed until I returned after gulping a quick dinner (I was ravenous due to not having an opportunity to eat earlier) and finally fell back to sleep after continued nursing. So Friday night I got to sleep around 1am. Talk about a long day! Kaia then woke up at 4am, scared when she looked around in a strange place, so I got up to nurse her (something I normally wouldn’t do at home in the middle of the night). She fell back to sleep. I, unfortunately, had difficulty getting back to sleep, but finally did so around 6am, only to be woken up at 7:30am by Kaia ready to start the day. Ditto everything Saturday night, except Sunday morning it was up again at 4am in order to be the airport for a 7am departure. I even packed up all our gear and carried everything up the stairs and out to the car by myself on Sunday morning. Did I mention that I was proud of myself? The endurance required exceeded that needed for any training or road races that I've ever run. I still haven’t caught up on the sleep from the weekend.
The whole experience made me realize how lucky I am to be a part of a couple. I don’t know how single mothers do it. Hubby and I share so much of the load. Kaia is great on flights but just carrying all our stuff and her on and off the plane is difficult. I never turn down offers of help. If you ever see a woman traveling alone with children, please offer to help.
A highlight of the trip was Kaia’s experience with my sister’s dogs. My sister has two boston terriers. Kaia has never really been around dogs. Our neighbor has one, a very loud barking dalmation. Kaia cautiously checks him out by the fence while he frantically attempts to jump the fence separating our yards and barks frenetically in her face. She never cries, just trembles a little, stares very hard at him, and holds on to us for dear life. Upon entering my sister’s townhouse, the dogs came running up to Kaia and immediately started licking her hands. Being tactilely defensive, this is the most horrendous assault poor Kaia could endure. After a few seconds delay of shock, she started screaming. After that, the mere sight of the dogs caused her to quiver and scream with fear.
I knew (or rather, hoped) that Kaia just needed some time to warm up to the dogs. So, I held the dog at a distance to show her the dog was okay and harmless. Gradually over the course of a couple hours, I got in closer proximity to her while holding the dog. When I reached the point where I was very close, I had her pet the dog and showed her that I would kiss the doggy. Her whole disposition toward the doggys changed. They were now objects of fascination. She was obsessed with watching the doggys’ antics chewing and tossing a rope bone. She literally chased them around the circular layout of my sister’s place. Upon getting close, she would vocalize quite emphatically and point at the doggy. She was so excited. I took a couple short videos of her vocal exchange with the doggy.
I was quite concerned after this experience about how she would react to her (at the time) upcoming hippotherapy sessions. Thankfully the horse didn't try to lick her so she didn't respond with the same trepidation.
In addition to seeing my sister and celebrating with her, I also got to see my aunt and cousin, both of whom I rarely have the opportunity to see. Kaia and I did this same trip to my sister's last year in February but I think I was still used to the sleep deprivation then. I also flew solo with Kaia to and from ND in August. This February, the trip was worth the effort, but let me just state for the record that I absolutely, definitely, definitively, prefer not to fly solo.
I do have to admit that by the end of it all I was exhausted. Really, really exhausted. I hadn’t been that tired since Kaia’s early months. I had to wake up at 3:45am on Friday in order to leave the house by 5:30am to arrive at the airport by 6am for a 7am departure. I didn’t get to bed until after midnight the night before. So already I was exhausted. Of course Kaia doesn’t sleep well the first couple days of vacation in a strange environment. Add to that we were staying in my sister’s unfinished basement (her house was packed to the gills with guests) which was a little (actually quite a bit) on the chilly side. I had Kaia wearing a long sleeve turtleneck shirt, pj pants, thick socks, a flannel footie sleeper, and her sleep sack, yet her little hands were still cold as icicles. I finally persuaded my sister to allow us to use a space heater.
Kaia nursed for 50 minutes on Friday night before finally dropping off at 10pm. Then she woke up when I laid her in the borrowed playpen and screamed until I returned after gulping a quick dinner (I was ravenous due to not having an opportunity to eat earlier) and finally fell back to sleep after continued nursing. So Friday night I got to sleep around 1am. Talk about a long day! Kaia then woke up at 4am, scared when she looked around in a strange place, so I got up to nurse her (something I normally wouldn’t do at home in the middle of the night). She fell back to sleep. I, unfortunately, had difficulty getting back to sleep, but finally did so around 6am, only to be woken up at 7:30am by Kaia ready to start the day. Ditto everything Saturday night, except Sunday morning it was up again at 4am in order to be the airport for a 7am departure. I even packed up all our gear and carried everything up the stairs and out to the car by myself on Sunday morning. Did I mention that I was proud of myself? The endurance required exceeded that needed for any training or road races that I've ever run. I still haven’t caught up on the sleep from the weekend.
The whole experience made me realize how lucky I am to be a part of a couple. I don’t know how single mothers do it. Hubby and I share so much of the load. Kaia is great on flights but just carrying all our stuff and her on and off the plane is difficult. I never turn down offers of help. If you ever see a woman traveling alone with children, please offer to help.
A highlight of the trip was Kaia’s experience with my sister’s dogs. My sister has two boston terriers. Kaia has never really been around dogs. Our neighbor has one, a very loud barking dalmation. Kaia cautiously checks him out by the fence while he frantically attempts to jump the fence separating our yards and barks frenetically in her face. She never cries, just trembles a little, stares very hard at him, and holds on to us for dear life. Upon entering my sister’s townhouse, the dogs came running up to Kaia and immediately started licking her hands. Being tactilely defensive, this is the most horrendous assault poor Kaia could endure. After a few seconds delay of shock, she started screaming. After that, the mere sight of the dogs caused her to quiver and scream with fear.
I knew (or rather, hoped) that Kaia just needed some time to warm up to the dogs. So, I held the dog at a distance to show her the dog was okay and harmless. Gradually over the course of a couple hours, I got in closer proximity to her while holding the dog. When I reached the point where I was very close, I had her pet the dog and showed her that I would kiss the doggy. Her whole disposition toward the doggys changed. They were now objects of fascination. She was obsessed with watching the doggys’ antics chewing and tossing a rope bone. She literally chased them around the circular layout of my sister’s place. Upon getting close, she would vocalize quite emphatically and point at the doggy. She was so excited. I took a couple short videos of her vocal exchange with the doggy.
I was quite concerned after this experience about how she would react to her (at the time) upcoming hippotherapy sessions. Thankfully the horse didn't try to lick her so she didn't respond with the same trepidation.
In addition to seeing my sister and celebrating with her, I also got to see my aunt and cousin, both of whom I rarely have the opportunity to see. Kaia and I did this same trip to my sister's last year in February but I think I was still used to the sleep deprivation then. I also flew solo with Kaia to and from ND in August. This February, the trip was worth the effort, but let me just state for the record that I absolutely, definitely, definitively, prefer not to fly solo.
Thursday, February 12, 2009
Her little pony
Growing up, I always wanted a pony. What little girl doesn’t? I don’t think I had an opportunity, though, to ride a horse until I was in my late teens. So it blows my mind that my little girl had her first pony ride today. And she will get to ride her pony, a little white retired show pony named Molly, every Thursday morning for the foreseeable future. These aren’t just any old pony rides, either. They are official hippotherapy sessions. A physical therapist guides Kaia on the horse around the large barn. Kaia rides facing forward and then facing backward. As kids progress, they even stand while riding on the horse. We saw a little 3 year old boy doing that during Kaia’s session today. Apparently he had started hippotherapy a year ago and couldn’t even bear weight on his legs. Within six months he was walking. There’s more info about hippotherapy in this article: http://www.nuvo.net/news/article/horses-heal The company featured in the article is the one where Kaia rides. The therapist named at the beginning is also Kaia’s therapist.
All of Kaia’s therapists have been telling us grand tales of how much progress Kaia will make when she starts hippotherapy. I don’t even care if that’s true. Don’t get me wrong, I want her to progress. I’m just excited that she is riding a horse! And I hold my expectations in check, especially after the professional who fitted her orthotics told us that kids were often walking within a couple weeks after getting them (orthotics). We just want this to be a pleasurable experience for her and I know that it is an amazing opportunity for her – in terms of sensory-input, another hour with a physical therapist, and just riding a horse, for goodness sakes!
Getting there has been a little complicated. Kaia’s been on the waiting list for occupational and physical hippotherapy since November. She was number 8 for OT and number 4 for PT. The hippotherapy stable called last week with openings for both OT and PT. We were in a bit of a dilemma over how to proceed with therapy because we were unsure how we wanted to pay for the sessions. The early intervention program through which Kaia currently receives occupational and physical therapy would cover hippotherapy by replacing either her OT or PT provider in the home. We’d also have to prove that these therapies were not working in the home. Right now she receives 2 hours of OT in the home and 1 hr of PT per week. Her OT works on feeding issues in addition to fine motor skills. The hippotherapy provider only had 1 hr of OT open and they cannot work on feeding at the barn. You’d think we could just keep 1 hour of OT in the home to work on feeding and have 1 hour at the stable for hippotherapy OT, right? Apparently that’s a big no-no. It seems it is impossible to have two providers on her plan for the same service (OT). (If you utilize early intervention in Indiana and have a different experience, please let me know.) We also really did not want to give up Kaia’s current PT in the home. In the end, we decided to do hippotherapy by paying for it with private insurance. This meant paying more out of pocket (a copay and coinsurance). That may not sound like much but over the course of a year it adds up. Our insurance is strange in that we have unlimited PT benefits – no annual limit on visits, no specific lifetime cap. However, OT benefits are unbelievably low. There is no annual limit on visits, but there is a lifetime cap of $1000. That covers maybe 10 visits. If you have a child with an ongoing need for OT, that is pitiful coverage. Kaia will receive, thankfully, services with the early intervention program until she’s 3. After that, it’s the school system, and from what I’ve been told, there really is no such thing as individual, 1 on 1 therapy there. That’s something we’ll just have to deal with in the future, though. Right now we decided to keep her two hours of OT in the home with early intervention, as well as her hour of PT, and utilize our private insurance to cover hippotherapy as PT. We’re still hoping that we may be able to appeal the ridiculous rule I mentioned regarding 2 providers with early intervention but I’m glad that we have such good PT coverage with our insurance and that she could get started right away. That’s the most important thing.
Here’s a couple shots of Kaia’s first pony ride. You can see that I was the sidewalker. Normally they don't allow parents to do that. Since it was Kaia's first time they made an exception.
Still smiling at the end!
All of Kaia’s therapists have been telling us grand tales of how much progress Kaia will make when she starts hippotherapy. I don’t even care if that’s true. Don’t get me wrong, I want her to progress. I’m just excited that she is riding a horse! And I hold my expectations in check, especially after the professional who fitted her orthotics told us that kids were often walking within a couple weeks after getting them (orthotics). We just want this to be a pleasurable experience for her and I know that it is an amazing opportunity for her – in terms of sensory-input, another hour with a physical therapist, and just riding a horse, for goodness sakes!
Getting there has been a little complicated. Kaia’s been on the waiting list for occupational and physical hippotherapy since November. She was number 8 for OT and number 4 for PT. The hippotherapy stable called last week with openings for both OT and PT. We were in a bit of a dilemma over how to proceed with therapy because we were unsure how we wanted to pay for the sessions. The early intervention program through which Kaia currently receives occupational and physical therapy would cover hippotherapy by replacing either her OT or PT provider in the home. We’d also have to prove that these therapies were not working in the home. Right now she receives 2 hours of OT in the home and 1 hr of PT per week. Her OT works on feeding issues in addition to fine motor skills. The hippotherapy provider only had 1 hr of OT open and they cannot work on feeding at the barn. You’d think we could just keep 1 hour of OT in the home to work on feeding and have 1 hour at the stable for hippotherapy OT, right? Apparently that’s a big no-no. It seems it is impossible to have two providers on her plan for the same service (OT). (If you utilize early intervention in Indiana and have a different experience, please let me know.) We also really did not want to give up Kaia’s current PT in the home. In the end, we decided to do hippotherapy by paying for it with private insurance. This meant paying more out of pocket (a copay and coinsurance). That may not sound like much but over the course of a year it adds up. Our insurance is strange in that we have unlimited PT benefits – no annual limit on visits, no specific lifetime cap. However, OT benefits are unbelievably low. There is no annual limit on visits, but there is a lifetime cap of $1000. That covers maybe 10 visits. If you have a child with an ongoing need for OT, that is pitiful coverage. Kaia will receive, thankfully, services with the early intervention program until she’s 3. After that, it’s the school system, and from what I’ve been told, there really is no such thing as individual, 1 on 1 therapy there. That’s something we’ll just have to deal with in the future, though. Right now we decided to keep her two hours of OT in the home with early intervention, as well as her hour of PT, and utilize our private insurance to cover hippotherapy as PT. We’re still hoping that we may be able to appeal the ridiculous rule I mentioned regarding 2 providers with early intervention but I’m glad that we have such good PT coverage with our insurance and that she could get started right away. That’s the most important thing.
Here’s a couple shots of Kaia’s first pony ride. You can see that I was the sidewalker. Normally they don't allow parents to do that. Since it was Kaia's first time they made an exception.
Riding backwards:
Still smiling at the end!
Monday, February 9, 2009
She's on fire
Kaia was on fire walking today. It's like she is turning a corner or a switch is happening in her brain that maybe walking can be as or more efficient that crawling. Several times today she would go from a supported standing position to another supported standing position via a few independent steps. I think she walked 5 feet in the living room that way. It was so cute, she did so with these short, staccato steps; almost a run. She has done this before but the quality of her movement and steps is getting so much better. I probably sound like a therapist when I say that but it's true. Lately I've been surprised by just how much she is choosing to stand without support as well, even when not enticed by a favorite toy. And over the weekend she was walking most excellently with one hand held. Most of the time she would hold on to just one of my fingers, as if she just needed the security that she was indeed being supported.
Then, tonight. It was a gorgeous day here. All of our recent snowfall has melted and it was almost 60 degrees today. So after dinner Paul took her outside to push her wagon. Even with all the above progress I still could not believe it when he said that she walked 27 consecutive steps! chasing the wagon just slightly out of reach ahead of her. That's a record. I wish he could've gotten video of it. I am feeling more and more optimistic that she is getting closer and closer to walking independently. She is such an amazing little girl.
Then, tonight. It was a gorgeous day here. All of our recent snowfall has melted and it was almost 60 degrees today. So after dinner Paul took her outside to push her wagon. Even with all the above progress I still could not believe it when he said that she walked 27 consecutive steps! chasing the wagon just slightly out of reach ahead of her. That's a record. I wish he could've gotten video of it. I am feeling more and more optimistic that she is getting closer and closer to walking independently. She is such an amazing little girl.
Thursday, February 5, 2009
Seashells on the seashore
The weekend before last we went to Sebastian, Fl to visit my in-laws who were spending a week in the sunshine. The condo we stayed in included the use of a 15 foot motorboat so on Saturday we cruised out to a little island in the Indian River and did a little exploring. Upon landing, Kaia immediately started trying to jump out of my arms to get on the sand. We’ve always made it a point to put her in the sand on vacations for the sensory input. She never really seemed to care one way or the other about it but this time she really loved it. Here is a little photo-essay of our weekend.
I think Kaia could've played like this in the sand for hours...
Nope, do not adjust your screen, that is not Hank Williams Jr. That's my handsome husband sporting a beard and all I can say is, quite a hat.
This is my favorite. Yep, she's really squatting on her own. The beach was composed of literally whole shells that would just crush into sand beneath your feet. Kaia couldn't get enough of just scooping them up and letting them cascade through her fingers.
Proud Grandma Linda
Hangin' with Grandpa
Man, she loves the water
A girl's gotta have ice cream on vacation (Check out those oral motor skills!)
Ugh; returning to Indiana
I think Kaia could've played like this in the sand for hours...
Nope, do not adjust your screen, that is not Hank Williams Jr. That's my handsome husband sporting a beard and all I can say is, quite a hat.
This is my favorite. Yep, she's really squatting on her own. The beach was composed of literally whole shells that would just crush into sand beneath your feet. Kaia couldn't get enough of just scooping them up and letting them cascade through her fingers.
Proud Grandma Linda
Hangin' with Grandpa
Man, she loves the water
A girl's gotta have ice cream on vacation (Check out those oral motor skills!)
Ugh; returning to Indiana
Wednesday, February 4, 2009
The "I's" have it - Inspiration, Intimidation, and maybe even a little Insecurity
Wow – in the short time since I’ve started this blog my readership has grown. I’ve invited a few people to read and posted the link on a social networking site. It’s amazing to me how many people will read this blog and email me to comment as opposed to commenting directly on the blog. Don’t get me wrong - I love the love in any form. I write this blog because I enjoy writing and there is so much about which I want to write. It’s an incredibly therapeutic process and a creative outlet. I don’t write for the comments, but rather for my original statement of purpose outlined in my first post.
However, knowing that you now have an audience can be a bit intimidating. I don’t want to edit what I write based on my audience. I wonder if that’s inevitable, though? Part of me wishes that I had remained completely anonymous. I could write whatever I wanted and not worry about whom I may offend or what someone may think. Yet somehow I crave the acknowledgement of an audience. Wow, saying (writing) that out loud surprises me. It’s a day of personal insight, I guess.
My foray into the blog world started with reading a few friends’ blogs. I think the first person I knew that had a blog was Mikal. His blog is http://www.belicove.com/. It is funny, thought-provoking, and at times controversial. Lately, he steadfastly posts Four for Friday questions, which are still funny, thought-provoking, and at times controversial, but his blog seems to have condensed to just that topic.
Then over the course of several years I met a couple other people that had blogs. I thought it was interesting, if a bit quirky and self-absorbed, to have a blog. Still, I was inspired. Putting it all out there like that just wasn’t me. I wished that it was, but it wasn’t. I didn’t feel like I had that much worth saying. Or, more correctly, worth reading.
My most recent blog inspiration came when I happened upon a blog after googling SMO’s. SMO’s are the type of orthotics that Kaia started wearing in October. A blog written by a mom of a child with special needs popped up. She had written an entry specifically about her son’s SMO’s. I was fascinated reading the post archives of her blog. She had faced so many challenges and experiences similar to ours. I was amazed by just how much I could’ve written of it. I was so inspired by her stories and by her candor that I finally had to make the leap and share our story. I only hope that I can give the sense of connection and inspiration to another reader that she gave me. Her blog is http://www.specialconsiderations.blogspot.com/. If you visit you’ll notice a striking similarity in how our blogs look. I’m afraid that’s my doing. Inadvertently I chose the same blogger template. I hope she’s not offended. They do say imitation is the sincerest form of flattery, right?
Then there are the blogs that intimidate me. I don’t mean that in a negative way. With the utmost reverence I read these blogs. Their authors can write. Holy cow, these people can write. They are funny, honest, fresh, and within a post can bring you to tears. There is a cadence, a natural rhythm to their writing that defies language. I aspire to write like that. A few of my blogs of intimidation include http://www.teahouseblossom.blogspot.com/, http://signsoffaithbook.com/, and http://www.stuffchristianslike.blogspot.com/. I don’t always agree with the authors on philosophical or religious views but I always appreciate reading their take on it. Reading their blogs sometimes makes me wonder if I have any business publishing my stories in cyberspace.
I guess I can’t promise to always be as entertaining or emotionally moving as the authors of my blogs of intimidation. But I do vow to remain true to my original purpose: “to document my daughter, Kaia’s amazing progress, to a few ends. One is selfish, to keep a journal of sorts of her early years; another is to communicate in an efficient manner all that is new in her world to those family and friends who are interested; and the last is to provide support and encouragement to, and to connect with, other families with kids with special needs.”
I invite all readers to comment. If you dare, comment publicly, using your real name, or even just your screen name. Honesty about who we are and accountability for our words is a powerful force. It’s one that I am embracing.
However, knowing that you now have an audience can be a bit intimidating. I don’t want to edit what I write based on my audience. I wonder if that’s inevitable, though? Part of me wishes that I had remained completely anonymous. I could write whatever I wanted and not worry about whom I may offend or what someone may think. Yet somehow I crave the acknowledgement of an audience. Wow, saying (writing) that out loud surprises me. It’s a day of personal insight, I guess.
My foray into the blog world started with reading a few friends’ blogs. I think the first person I knew that had a blog was Mikal. His blog is http://www.belicove.com/. It is funny, thought-provoking, and at times controversial. Lately, he steadfastly posts Four for Friday questions, which are still funny, thought-provoking, and at times controversial, but his blog seems to have condensed to just that topic.
Then over the course of several years I met a couple other people that had blogs. I thought it was interesting, if a bit quirky and self-absorbed, to have a blog. Still, I was inspired. Putting it all out there like that just wasn’t me. I wished that it was, but it wasn’t. I didn’t feel like I had that much worth saying. Or, more correctly, worth reading.
My most recent blog inspiration came when I happened upon a blog after googling SMO’s. SMO’s are the type of orthotics that Kaia started wearing in October. A blog written by a mom of a child with special needs popped up. She had written an entry specifically about her son’s SMO’s. I was fascinated reading the post archives of her blog. She had faced so many challenges and experiences similar to ours. I was amazed by just how much I could’ve written of it. I was so inspired by her stories and by her candor that I finally had to make the leap and share our story. I only hope that I can give the sense of connection and inspiration to another reader that she gave me. Her blog is http://www.specialconsiderations.blogspot.com/. If you visit you’ll notice a striking similarity in how our blogs look. I’m afraid that’s my doing. Inadvertently I chose the same blogger template. I hope she’s not offended. They do say imitation is the sincerest form of flattery, right?
Then there are the blogs that intimidate me. I don’t mean that in a negative way. With the utmost reverence I read these blogs. Their authors can write. Holy cow, these people can write. They are funny, honest, fresh, and within a post can bring you to tears. There is a cadence, a natural rhythm to their writing that defies language. I aspire to write like that. A few of my blogs of intimidation include http://www.teahouseblossom.blogspot.com/, http://signsoffaithbook.com/, and http://www.stuffchristianslike.blogspot.com/. I don’t always agree with the authors on philosophical or religious views but I always appreciate reading their take on it. Reading their blogs sometimes makes me wonder if I have any business publishing my stories in cyberspace.
I guess I can’t promise to always be as entertaining or emotionally moving as the authors of my blogs of intimidation. But I do vow to remain true to my original purpose: “to document my daughter, Kaia’s amazing progress, to a few ends. One is selfish, to keep a journal of sorts of her early years; another is to communicate in an efficient manner all that is new in her world to those family and friends who are interested; and the last is to provide support and encouragement to, and to connect with, other families with kids with special needs.”
I invite all readers to comment. If you dare, comment publicly, using your real name, or even just your screen name. Honesty about who we are and accountability for our words is a powerful force. It’s one that I am embracing.
Monday, February 2, 2009
Signs of the time
Kaia has officially added another sign to her repertoire. She really is making steady progress with communication. For the past week she’s been doing the “all done” sign, in addition to “more” and waving “bye bye”. The "all done" sign looks kind of like if you were brushing crumbs off your chest. The way Kaia does “all done” is kind of a both hands wave. She gets very excited when she sees us excited about her doing the sign. We start signing it back to her and her sign becomes even more animated.
Her receptive language ability is also growing more evident. Lately when we tell Kaia "it’s time to eat" and make the eat sign to her, or ask her “where do we eat?”, she vocalizes and points with an isolated pointer finger to her highchair. Then she crawls very excitedly to the highchair, pulls up to it, and looks at us like, OK, you said it’s time to eat, let’s eat.
She also loves her pecs schedule. Pecs is a picture exchange communication system. We started doing very primitive versions of pecs last summer with Kaia. Initially we offered choices with the pictures, and reinforced whichever picture she chose with that toy or activity. Then Kaia’s speech therapist taught us how to use a picture to teach her the concept of exchanging the picture for a desired outcome. For example, we used a picture of a green circle during a turn taking activity and Kaia would have to give us the green circle to have a turn with the toy. At first, when Kaia wasn’t yet releasing objects, we had to have two adults doing this activity with her. One adult would physically assist Kaia hand the picture to the other adult to get her turn. It’s much easier now that she is releasing objects because she is also giving us things.
Our newest foray with pecs is an activity schedule. I read about this at: http://www.brighthub.com/education/special/articles/2723.aspx. Although it really is intended to help kids with autism function more independently, I figured it would be an easier way for us to incorporate pecs into Kaia’s daily life now by giving her more opportunities to have exposure to the pictures and the concept that the pictures mean something. The other methods above I found I had to make a conscious effort to do once each day. It was another thing on the to do list each day and Kaia only had that one opportunity each day to learn that these pictures are useful for something. Kaia also thrives on routine so setting up a visual schedule seemed to make sense with her affinity for routine. It still is difficult to remember to return to the schedule so that she can remove the latest completed activity and put it in the all done envelope. Sometimes we get a few pictures behind but we just talk about them when we do catch up and she loves the chance to put more than one in the packet. It’s great because we make her stand to remove the picture, then squat to put it in the packet.
Last, but certainly not least, Kaia was also saying mama like crazy on Saturday. Music to my ears!
Her receptive language ability is also growing more evident. Lately when we tell Kaia "it’s time to eat" and make the eat sign to her, or ask her “where do we eat?”, she vocalizes and points with an isolated pointer finger to her highchair. Then she crawls very excitedly to the highchair, pulls up to it, and looks at us like, OK, you said it’s time to eat, let’s eat.
She also loves her pecs schedule. Pecs is a picture exchange communication system. We started doing very primitive versions of pecs last summer with Kaia. Initially we offered choices with the pictures, and reinforced whichever picture she chose with that toy or activity. Then Kaia’s speech therapist taught us how to use a picture to teach her the concept of exchanging the picture for a desired outcome. For example, we used a picture of a green circle during a turn taking activity and Kaia would have to give us the green circle to have a turn with the toy. At first, when Kaia wasn’t yet releasing objects, we had to have two adults doing this activity with her. One adult would physically assist Kaia hand the picture to the other adult to get her turn. It’s much easier now that she is releasing objects because she is also giving us things.
Our newest foray with pecs is an activity schedule. I read about this at: http://www.brighthub.com/education/special/articles/2723.aspx. Although it really is intended to help kids with autism function more independently, I figured it would be an easier way for us to incorporate pecs into Kaia’s daily life now by giving her more opportunities to have exposure to the pictures and the concept that the pictures mean something. The other methods above I found I had to make a conscious effort to do once each day. It was another thing on the to do list each day and Kaia only had that one opportunity each day to learn that these pictures are useful for something. Kaia also thrives on routine so setting up a visual schedule seemed to make sense with her affinity for routine. It still is difficult to remember to return to the schedule so that she can remove the latest completed activity and put it in the all done envelope. Sometimes we get a few pictures behind but we just talk about them when we do catch up and she loves the chance to put more than one in the packet. It’s great because we make her stand to remove the picture, then squat to put it in the packet.
Last, but certainly not least, Kaia was also saying mama like crazy on Saturday. Music to my ears!
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