This is going to be a quickie, since it's late, but I just wanted to recount some good stuff that happened today before I forget to do so/life gets the better of me.
First, it turns out that Hallie is beginning to do pretty elaborate pretend play. This evening, before dinner, Hallie asked us to get down her lion figure for her (one of her menagerie of molded plastic animals) and I got down the entire bin, figuring that she'd want to line them up or something. Instead, what she wanted to do was to pretend to be a lion. In true Floortime tradition, she handed me and Sharon a couple of horses and asked us to be horses (and later handed Lea a tiger and wanted her to pretend to be one). We were racing around the house naying while Hallie was racing around roaring when Hallie stopped to let us know that we were at animal zoo. So it seems to us that there are stories behind all of what seemed to be fairly rudimentary pretend play after all.
This was borne out during dinner. Hallie sat with us and ate a little bit of bacon, a couple of ends of fries, and a few bites of applesauce (after earlier eating about a half a piece of pizza...more on pizza in a bit) and we were happy to let her get down from her chair (we are now using the high chair at the table without a tray) since she had been a very congenial dinner companion for about fifteen or twenty minutes. We noticed that Hallie was over at her pretend kitchen doing something so we paused our own adult conversation and listened in on hers. Apparently, she was brushing her teeth at the kitchen sink. She had grabbed a toothbrush, used one of the various food receptacles to squeeze toothpaste onto it, wet it by turning the 'faucet' on the sink, brushed, filled up her cup with water, spat out the water and then proceeded to wash her hands, using the fake blender as a pretend liquid soap dispenser. She was talking to herself during this process. This does reproduce a ritual that she and I do every morning (and sometimes during the day if we stop into the bathroom on the way up or down the stairs). We've come to love the brushing teeth routine (and Hallie has recently shown me how much she adores this by actually allowing me to brush her teeth for her, for which I am very grateful given her preemie and reflux problems). And apparently she loves it so much that she is happy to reenact it in pretend play.
On top of this, Hallie proved herself to be more flexible than we had thought: on the way home from New Jersey, we stopped into Whole Foods to pick up the goat mozzarella pizza that I had special ordered for her (thank goodness for Whole Foods and how amenable its workers are to accommodating the bizarre requests that I make to them). Hallie woke up shortly before we got to the store and we were expecting that I would either have to bring her into the store with me (she rather enjoys shopping, at least) or that she'd end up in tears. I asked her whether she would like to come with me into the store or stay with mommy in the car and she opted for the latter. I made sure that I had my cell phone on me in case I needed to run back to the car to deal with a meltdown but never got this call. Rather, she informed Sharon that "mama will be right back" and seemed fine. Sharon asked Hallie where I went, fully expecting her to retort that I had gone off to get some "circle icey". Instead, Hallie matter of factly answered, "mama go to store to get pizza and be right back." Apparently, the kid had been listening in on the conversation that Sharon and I had had on the way to Whole Foods and completely understood where it was that I was going, why I was going there, etc.
So, just when things fall apart a bit around here, Hallie turns around and amazes us with what she can do and helps allay our fears. That's a pretty good skill for a kid to have (and she has always had it---even back in the NICU, Hallie seemed to rally when things seemed at their worst). We are very grateful to Hallie for that, as we are for so much.
How Old is Hallie?
How Old is Lea?
Monday, September 21, 2009
Sunday, September 20, 2009
Developmental Concerns
Concerns are never far at bay in our world. We'll have some nice stretches of time (usually days, rarely weeks) when things seem to be going well around here and then other, more frequent and longer stretches when things seem to be falling apart or, more aptly, when the puzzle pieces do not quite fit into place and we are not sure what to do for Hallie.
We're kind of in the latter situation right now. For the past bunch of months (since around the latter part May, I think), the eating situation has gotten entirely out of control. Hallie went from more or less eating 20 to 25 foods (with lots of prompting, distraction, and reinforcement via rewards, but still...) to eating fewer and fewer as the days and weeks dragged on. We're now down to about four (on a good day) foods: potato chips (which she has even refused on occasion); chocolate cake (maybe, but it's worth a try); pretzels (ditto); and french fries. The last two are not consumed -- rather, she will bite the ends off of them and discard the vast middle, regardless of how crunchy that is. She might take a nibble or two of pizza if we're lucky but gone are the days when she ate a reasonable amount of this. And under no circumstances does she eat anything resembling a meal. "Meals" are at most 50 calories. And that's on a very, very good day. Foods she used to eat in pretty large quantities such as goat cheese (half an ounce to an ounce at a time); bacon (one to four slices at a time); hot dogs (anywhere between a third to a whole chicken hot dog); french fries (whole fries, and ten to twenty at a time); toast (anywhere between a quarter and a whole slice); toasted bagels and English muffins; the aforementioned pizza; chunks of watermelon, pears, and apples or little handfuls of raisins; and probably some stuff I'm forgetting about now are all mostly off limits. Ninety percent of the time, just presenting these foods to Hallie will yield repetitively screamed "NO"s, hand wringing, quiet meltdowns, and other manifestations of disgust. Under no circumstances will she try the vast majority of these, and while she might nibble at her now exclusively preferred texture (crunchy), she doesn't "eat" them in any conventional sense of that word. We've been to feeding evaluations and therapies, we have done copious amounts of reading, we've tried numerous tactics (immediate and deferred rewards, eating at the table as a family and engaging her in conversation, using other peers to model eating for her, not eating at the table, chasing her around with food...you get the picture). She is having nothing of it. This is worrisome from a dietary standpoint since her intake is now limited to water (she'd drink this all day), fruit purees that we feed her (maybe 250 calories a day on a good day), and her beloved bottle (all hopes of getting rid of this now dashed, and before you write a comment saying that this is at the root of her eating difficulties please beware that on the best days she only drinks 12 to 16 ounces of her high calorie (27kcal) formula for a total of 300 to 400 calories---she's not exactly filling up on this, folks, since she needs a minimum of 900 calories a day to just hold her own).
We're not really sure what's going on here. Part of this is the "terrible twos" which our globally delayed kid has come to late (as she has come to everything else...except her birth, which she came to way too early, ironically enough). A friend of ours brought her just two-year old son over for dinner right before they relocated to California (and thus decreased our number of real-lfe friends by about 15%) and it was eye-opening to watch S. at the table refusing everything with which his mom presented him. So part of it could be a "phase." This phase, in typically developing children, is often linked to their realization that they are more independent and have more control over what they do in life. It's often a good thing, even if a hard thing, on the road to a child individuating him or herself. But your typical kid also drinks enough milk to compensate for refusing solids and, more importantly, often likes food--or at least something in the world of comestibles--enough to break down and come around to eating again. Hallie, in contrast, hates food and sees it as a source of pain (remember the GI pain, vomiting, etc that plagued her for so long) and does not 'feel hungry' in any conventional way. So she is content to not eat at all.
Parental intuition suggests to us that something more significant is going on than an extreme version of terrible two food rejection, yet neither Sharon nor I can wrap our heads around it fully. We don't think that the primary cause is physiological/medical, either. Certainly, Hallie's food aversions this past week or so may be attributable in part to signs of increased reflux (possibily due to her cold, which always increases her phlegm and probably naturally decreases her appetite, t00). She has managed to eke out a few more vomit free days (up to 184 at this point), but the vomiting has picked up some and so has the silent reflux. But the trend of not eating predates the increased symptoms of reflux and this seems secondary to the problem and not at the root of the eating issue.
Hallie is a kid who is very "spectrumy" (for want of a better word...it sucks to be stuck in limbo knowing that your child has neither been placed definitively on the autism spectrum nor fully cleared from it). While all children need routine and even crave it, for her routines seem even more significant. She sets up her own rituals. For example, she has to take out certain toys when certain people come to play, must use swings in the playground before anything else, and has 'exit rituals' where she must touch certain objects on the way out of places. We are not sure why she needs these things, but she needs them--it's not just a matter of habit or preference, but some sort of connection in her brain that she is making and that she cannot explain to us. If you disrupt these rituals and routines, things don't go smoothly. Hallie does not have huge tantrums or meltdowns for the most part--this is one area where she does not resemble most children with ASD--but disturbing the ritual makes life more complicated. Here's one case in point: for the longest time, we could not figure out why Hallie felt that it was okay for Sharon to leave the house for work in the morning but that, on the rare occasion that she sees me leave for work or the store or whatever, she would burst into inconsolable tears. We finally realized that it was because no ritual existed for this. When I am at work, I leave home before she is awake and that there is no established pattern on which she can hang her head when I leave during the day for a trip to the store or to do some reading at a cafe. Were I to establish such a ritual, it would be fine. For example, on Friday nights when we head down to the shore for hippotherapy, we stop at a convenience store to purchase a bag of ice for the cooler. At first this used to elicit severe crying jags from Hallie that often would lead to vomiting. Distracting Hallie with a game of Dress Chica on the iPhone or singing songs didn't really seem to help. What did help was constructing a 'social story' for her that helps her anticipate what is going to happen and that she can turn into a ritual. We have now taught her to realize that 1. mama is going to the store to buy a bag of 'circle icey' (her name for ice cubes that have circular holes for your finger in the middle) and that 2. mama will be right back. She repeats this story to us and is okay when I get out and perform the task.
We have come around to thinking that something that we did to shake up Hallie's routine--and you can take your pick here about what that might have been--is what made things worse in terms of feeding Hallie (not that they were ever good, mind you). Back in May, in anticipation of preschool, we tried to get her off of the bottle. We also tried to get rid of the television (and pretty much have) at mealtimes since it was not only something she was going to have to live without when eating at school but because we felt that it was too distracting to her (it led to some pocketing of food) and inhibited communication and interaction, which is something else that we were working on. Either of these things, or some other shift in routine too subtle for us to have a handle on right now, might have triggered her to ramp up food refusal to an extreme.
This is what first got us thinking about routines and how they might play a role in all of this: both Sharon and I were at the most recent feeding therapy session with Hallie at Jefferson this past week and, while I had prepared the usual meal to feed Hallie (toast, cheese, spaghetti, chips, applesauce, and yogurt), we were so distraught about how bad things have gotten in terms of her eating that we never bothered to unpack the food. We just started to hash things out and brainstorm with the therapist. Hallie sat at the table playing and the three of us just talked. Part way through the session (maybe fifteeen minutes into), Hallie grabbed her pink lunch bag and began to rifle through it, brought the food containers to the table, unwrapped the toast (with help from the therapist), ate a small square of it (more than she had in days), ripped up the rest (she is a championship level ripper and player with food), and then asked for her reward. Why did she do this? Because that's the routine that has been established for this room. That is the structure of how things unfold and she cannot help but have them unfold this way. Anything short of this disturbs her more than eating disturbs her.
Since we cannot just take over that office in the Jefferson rehab building three times a day, we are beginning to think that our new task is to figure out how to come up with some new routine for her for eating that might work. I think this gets us a bit away from child-directed Floortime principles and back to ABA (applied behavioral analysis) but I think we can live with this approach as long as it does not involve force-feeding our kid. We are aware that we need to construct some sort of 'social story' for Hallie around meals. The only problem is that things around meals are now so bad that we really don't know where to start.
We also are concerned that feeding Hallie's demand for routine (pun intended) may be detrimental and not helpful in the long run. We need some guidance here from the specialists (thankfully, Sharon and I meet with our Floortime guy for a parents' session on Monday night and we have a follow-up with the developmental ped a week from now). Does encouraging repetitive or scripted behavior help or hurt a child who is spectrumy? Will Hallie learn to generalize things (like eating, or playing, or communicating) this way or just be stuck with a 'script' (which is often the charge lodged against ABA as a therapeutic approach)? How do we get her to do what she needs to do and yet also learn to adapt, be flexible, creative, and think outside the box? And this, of course, provokes more, longer-term concerns: will our smart, enthusiastic, and adorable little girl ever be able to adapt to changing environments, new people and routines, and forge her own way or will we always need to manage things for her? I don't think that I can go there right now (as tempted as I always am to try to grab hold of and analyze the bigger picture) since the long-term future is too hard for me to imagine.
Anyway, I do think that the past few weeks have been particularly hard ones for Hallie. For various reasons, she missed two hippotherapy sessions in a row and her poor posture at therapy yesterday proved how essential this therapy is for. Her eye contact seems a bit off, as well, and we're not sure to what to attribute this--it's too soon to be feeling the effects of no more private OT (I think), but perhaps this is an indication that we're not doing quite enough Floortime or sensory integration activities with Hallie. It could also be rooted in her lack of food and the cold she seems to be nursing. Who knows. Hallie is also still readjusting to being back at school. She no longer has problems when I leave her, but she seems upset when I pick her up (like she is not sure that I am coming or something. I am not sure what this is about--maybe her peers' departure prior to her own provokes anxiety in her. She cannot tell us this and so we simply don't know). She was out of school for break just when things really began to go smoothly and she began to fit in there. Then she lost her excellent school aide and, while the new one is nice enough, she doesn't seem to be particularly good at trying to get Hallie to mix it up with the other kids. Hallie is showing signs of opening up to the others on her own -- she greets them by name each morning, will happily sit down at the table or in the circle immediately and is not showing signs of separation anxiety from me on most days (again, it's become a ritual to do this, so it's now fine).
She does seem to be making some effort to play with kids, but the new aide isn't as good about writing notes as the old aide was, and her analytical powers are less well-developed than those of PCA #2, so it's not entirely clear to me what this play entails. She is certainly not doing the elaborately-developed pretend play I've witnessed when observing some of Hallie's peers. I know she doesn't have the skills for this yet. Her pretend play mostly involves acting like other people or creatures (we will pretend to be bears who do bear walks and growl; she will pretend to be her cousin Taylor who is just learning to walk and ask me to walk her around the house in the same way that Aunt Kim walks Taylor around the house; and she will sometimes pretend to be Lea and mimic her babbling and crawling). That's fine--it's something to build on. But I am more concerned that Hallie is merely doing a lot of parallel playing at school, and, once again, those questions about whether she is merely delayed or whether this is a sign of some underlying disorder keep cropping up in my head.
I think I will have an opportunity to help with some of this. On Friday, when I was picking up Hallie from school, one of the other moms at school invited us to go to the playground across the street from the preschool. Apparently, a whole bunch of moms bring their kids here at three o'clock so they can play out their sillies. The mom who approached me told me that her husband had noticed how enthusiastic Hallie was about greeting their son when he arrived at school. She wondered whether Hallie was in his class (she is not; he's one of the older kids but Hallie is so tall that she is frequently mistaken to be four, which sort of sucks since it makes her seem even more delayed). But Hallie had recently added M. (her son) to the list of friends whom she rattles off to us each night (we were thrilled about this addition because it means that Hallie has varied her routine). And so, for lots of reasons, I was very happy to join the others on the playground.
Even though Lea was awake the entire time, she was (and is) such a good baby and she was content to hang out in the stroller, feed herself a bottle, and flirt with the moms (aside: I am grateful that Lea is so easy-going but feel guilty that parenting Hallie often means that Lea is parenting herself. She is getting very good at holding and tipping up her own bottle, which is a skill that Hallie didn't develop until some time after age 1.5 or so).
Hallie mostly did her own thing and did not mix it up with the other kids. I tried to get her to hang out with the others, or at least buzz around in their vicinity, but she sort of had her own agenda, which involved swinging and spinning on the swings for a more than average amount of time and borrowing a stroller with a teddy bear from another little girl (I had her ask the girl, and then offer the girl turns with her own stroller, which she did somewhat grudgingly and with a few tears).
At some points, the others were over at the swings, too, and she copied what her classmates were doing. And at one stage, when they were all over by the slides, she softly whispered in a voice that was only audible to me, "c'mon guys let's swing." But she is shy and her paralyzed vocal cord doesn't lend itself well to screaming across a big playground. Still, it was a good sign. She knows that they are there and she wants to figure out how to play with them (and she wants to call the shots on how they play, which is something she does with some of her other friend's, like Eliza Grace, Alex, her cousins, or Karina when she pops in unexpectedly). Without being too helicopter-ish, I will try to teach her how to approach her peers. I may say something to the sympathetic mom who invited us to join them so she knows why I am doing this and not just chatting about Philly politics and school stuff, our cute kids, and how much the world is going to a hand basket with the other moms who hang back in a clump while their kids play independently and work it out for themselves. This is complicated: I know that I shouldn't have to explain why I am participating differently in my kid's playtime than they are, but I somehow feel compelled to do so. As much as I don't want Hallie to be seen as different from the others, I nonetheless do feel like explaining why I am managing things a bit for her is not rooted in my desire to coddle her so much as my desire to help her skills progress in a way that will, hopefully, allow her to manage things for herself down the road.
Anyway, if you have managed to make it through this tedious and rambling post, I commend you. This was mostly written to help me sort out the things about which we have been thinking and the issues we've recently been facing. If you have any insight or ideas, we'd love to hear them. And, rest assured, not all is falling apart completely around here: both kids are smart and adorable and we really are enjoying them. On the Hallie smarts: we had CNN on the other day (a rare thing, since our TV is mostly tuned to Noggin and Sprout) and Obama came on to advocate health care reform. Hallie turned to the TV and pointed and said: "Obama!" I think I told her his name twice leading up to the election and once or twice since then. She's got a great memory and excellent capacity to attach names and faces, which is decidedly not an autistic trait. On the Lea smarts: the kid is figuring out how to push herself up into a standing position and wants desperately to do this while not holding onto anything. While this presents her with some personal danger (she's gone boink a few times), she's very much figuring out how to negotiate her own universe and demonstrating a lot of independence. At the same time, she is a most engaged baby who follow us around using her power army crawl and when she realizes that she's caught up with us/found us, flashes us this huge and very winning smile.
And Lea just got her first tooth. Can't see it yet, but we can definitely feel it. I am not sure that this makes her smarter but it will help her munch down on her preferred foods (pretzels, graham crackers, bagels, and cheerios--she's skipping baby food, we think) much more easily. And this kid loves to eat, which makes us very relieved.
To reward the fact that you've stuck with this, here's a couple of shots of Hallie taken by Sharon at the playground last weekend:
And one of Hallie 'reading' to Lea in bed last week:
OK, I'll end here. It's eight am and I've been up since five and desperately need a cup of coffee...
We're kind of in the latter situation right now. For the past bunch of months (since around the latter part May, I think), the eating situation has gotten entirely out of control. Hallie went from more or less eating 20 to 25 foods (with lots of prompting, distraction, and reinforcement via rewards, but still...) to eating fewer and fewer as the days and weeks dragged on. We're now down to about four (on a good day) foods: potato chips (which she has even refused on occasion); chocolate cake (maybe, but it's worth a try); pretzels (ditto); and french fries. The last two are not consumed -- rather, she will bite the ends off of them and discard the vast middle, regardless of how crunchy that is. She might take a nibble or two of pizza if we're lucky but gone are the days when she ate a reasonable amount of this. And under no circumstances does she eat anything resembling a meal. "Meals" are at most 50 calories. And that's on a very, very good day. Foods she used to eat in pretty large quantities such as goat cheese (half an ounce to an ounce at a time); bacon (one to four slices at a time); hot dogs (anywhere between a third to a whole chicken hot dog); french fries (whole fries, and ten to twenty at a time); toast (anywhere between a quarter and a whole slice); toasted bagels and English muffins; the aforementioned pizza; chunks of watermelon, pears, and apples or little handfuls of raisins; and probably some stuff I'm forgetting about now are all mostly off limits. Ninety percent of the time, just presenting these foods to Hallie will yield repetitively screamed "NO"s, hand wringing, quiet meltdowns, and other manifestations of disgust. Under no circumstances will she try the vast majority of these, and while she might nibble at her now exclusively preferred texture (crunchy), she doesn't "eat" them in any conventional sense of that word. We've been to feeding evaluations and therapies, we have done copious amounts of reading, we've tried numerous tactics (immediate and deferred rewards, eating at the table as a family and engaging her in conversation, using other peers to model eating for her, not eating at the table, chasing her around with food...you get the picture). She is having nothing of it. This is worrisome from a dietary standpoint since her intake is now limited to water (she'd drink this all day), fruit purees that we feed her (maybe 250 calories a day on a good day), and her beloved bottle (all hopes of getting rid of this now dashed, and before you write a comment saying that this is at the root of her eating difficulties please beware that on the best days she only drinks 12 to 16 ounces of her high calorie (27kcal) formula for a total of 300 to 400 calories---she's not exactly filling up on this, folks, since she needs a minimum of 900 calories a day to just hold her own).
We're not really sure what's going on here. Part of this is the "terrible twos" which our globally delayed kid has come to late (as she has come to everything else...except her birth, which she came to way too early, ironically enough). A friend of ours brought her just two-year old son over for dinner right before they relocated to California (and thus decreased our number of real-lfe friends by about 15%) and it was eye-opening to watch S. at the table refusing everything with which his mom presented him. So part of it could be a "phase." This phase, in typically developing children, is often linked to their realization that they are more independent and have more control over what they do in life. It's often a good thing, even if a hard thing, on the road to a child individuating him or herself. But your typical kid also drinks enough milk to compensate for refusing solids and, more importantly, often likes food--or at least something in the world of comestibles--enough to break down and come around to eating again. Hallie, in contrast, hates food and sees it as a source of pain (remember the GI pain, vomiting, etc that plagued her for so long) and does not 'feel hungry' in any conventional way. So she is content to not eat at all.
Parental intuition suggests to us that something more significant is going on than an extreme version of terrible two food rejection, yet neither Sharon nor I can wrap our heads around it fully. We don't think that the primary cause is physiological/medical, either. Certainly, Hallie's food aversions this past week or so may be attributable in part to signs of increased reflux (possibily due to her cold, which always increases her phlegm and probably naturally decreases her appetite, t00). She has managed to eke out a few more vomit free days (up to 184 at this point), but the vomiting has picked up some and so has the silent reflux. But the trend of not eating predates the increased symptoms of reflux and this seems secondary to the problem and not at the root of the eating issue.
Hallie is a kid who is very "spectrumy" (for want of a better word...it sucks to be stuck in limbo knowing that your child has neither been placed definitively on the autism spectrum nor fully cleared from it). While all children need routine and even crave it, for her routines seem even more significant. She sets up her own rituals. For example, she has to take out certain toys when certain people come to play, must use swings in the playground before anything else, and has 'exit rituals' where she must touch certain objects on the way out of places. We are not sure why she needs these things, but she needs them--it's not just a matter of habit or preference, but some sort of connection in her brain that she is making and that she cannot explain to us. If you disrupt these rituals and routines, things don't go smoothly. Hallie does not have huge tantrums or meltdowns for the most part--this is one area where she does not resemble most children with ASD--but disturbing the ritual makes life more complicated. Here's one case in point: for the longest time, we could not figure out why Hallie felt that it was okay for Sharon to leave the house for work in the morning but that, on the rare occasion that she sees me leave for work or the store or whatever, she would burst into inconsolable tears. We finally realized that it was because no ritual existed for this. When I am at work, I leave home before she is awake and that there is no established pattern on which she can hang her head when I leave during the day for a trip to the store or to do some reading at a cafe. Were I to establish such a ritual, it would be fine. For example, on Friday nights when we head down to the shore for hippotherapy, we stop at a convenience store to purchase a bag of ice for the cooler. At first this used to elicit severe crying jags from Hallie that often would lead to vomiting. Distracting Hallie with a game of Dress Chica on the iPhone or singing songs didn't really seem to help. What did help was constructing a 'social story' for her that helps her anticipate what is going to happen and that she can turn into a ritual. We have now taught her to realize that 1. mama is going to the store to buy a bag of 'circle icey' (her name for ice cubes that have circular holes for your finger in the middle) and that 2. mama will be right back. She repeats this story to us and is okay when I get out and perform the task.
We have come around to thinking that something that we did to shake up Hallie's routine--and you can take your pick here about what that might have been--is what made things worse in terms of feeding Hallie (not that they were ever good, mind you). Back in May, in anticipation of preschool, we tried to get her off of the bottle. We also tried to get rid of the television (and pretty much have) at mealtimes since it was not only something she was going to have to live without when eating at school but because we felt that it was too distracting to her (it led to some pocketing of food) and inhibited communication and interaction, which is something else that we were working on. Either of these things, or some other shift in routine too subtle for us to have a handle on right now, might have triggered her to ramp up food refusal to an extreme.
This is what first got us thinking about routines and how they might play a role in all of this: both Sharon and I were at the most recent feeding therapy session with Hallie at Jefferson this past week and, while I had prepared the usual meal to feed Hallie (toast, cheese, spaghetti, chips, applesauce, and yogurt), we were so distraught about how bad things have gotten in terms of her eating that we never bothered to unpack the food. We just started to hash things out and brainstorm with the therapist. Hallie sat at the table playing and the three of us just talked. Part way through the session (maybe fifteeen minutes into), Hallie grabbed her pink lunch bag and began to rifle through it, brought the food containers to the table, unwrapped the toast (with help from the therapist), ate a small square of it (more than she had in days), ripped up the rest (she is a championship level ripper and player with food), and then asked for her reward. Why did she do this? Because that's the routine that has been established for this room. That is the structure of how things unfold and she cannot help but have them unfold this way. Anything short of this disturbs her more than eating disturbs her.
Since we cannot just take over that office in the Jefferson rehab building three times a day, we are beginning to think that our new task is to figure out how to come up with some new routine for her for eating that might work. I think this gets us a bit away from child-directed Floortime principles and back to ABA (applied behavioral analysis) but I think we can live with this approach as long as it does not involve force-feeding our kid. We are aware that we need to construct some sort of 'social story' for Hallie around meals. The only problem is that things around meals are now so bad that we really don't know where to start.
We also are concerned that feeding Hallie's demand for routine (pun intended) may be detrimental and not helpful in the long run. We need some guidance here from the specialists (thankfully, Sharon and I meet with our Floortime guy for a parents' session on Monday night and we have a follow-up with the developmental ped a week from now). Does encouraging repetitive or scripted behavior help or hurt a child who is spectrumy? Will Hallie learn to generalize things (like eating, or playing, or communicating) this way or just be stuck with a 'script' (which is often the charge lodged against ABA as a therapeutic approach)? How do we get her to do what she needs to do and yet also learn to adapt, be flexible, creative, and think outside the box? And this, of course, provokes more, longer-term concerns: will our smart, enthusiastic, and adorable little girl ever be able to adapt to changing environments, new people and routines, and forge her own way or will we always need to manage things for her? I don't think that I can go there right now (as tempted as I always am to try to grab hold of and analyze the bigger picture) since the long-term future is too hard for me to imagine.
Anyway, I do think that the past few weeks have been particularly hard ones for Hallie. For various reasons, she missed two hippotherapy sessions in a row and her poor posture at therapy yesterday proved how essential this therapy is for. Her eye contact seems a bit off, as well, and we're not sure to what to attribute this--it's too soon to be feeling the effects of no more private OT (I think), but perhaps this is an indication that we're not doing quite enough Floortime or sensory integration activities with Hallie. It could also be rooted in her lack of food and the cold she seems to be nursing. Who knows. Hallie is also still readjusting to being back at school. She no longer has problems when I leave her, but she seems upset when I pick her up (like she is not sure that I am coming or something. I am not sure what this is about--maybe her peers' departure prior to her own provokes anxiety in her. She cannot tell us this and so we simply don't know). She was out of school for break just when things really began to go smoothly and she began to fit in there. Then she lost her excellent school aide and, while the new one is nice enough, she doesn't seem to be particularly good at trying to get Hallie to mix it up with the other kids. Hallie is showing signs of opening up to the others on her own -- she greets them by name each morning, will happily sit down at the table or in the circle immediately and is not showing signs of separation anxiety from me on most days (again, it's become a ritual to do this, so it's now fine).
She does seem to be making some effort to play with kids, but the new aide isn't as good about writing notes as the old aide was, and her analytical powers are less well-developed than those of PCA #2, so it's not entirely clear to me what this play entails. She is certainly not doing the elaborately-developed pretend play I've witnessed when observing some of Hallie's peers. I know she doesn't have the skills for this yet. Her pretend play mostly involves acting like other people or creatures (we will pretend to be bears who do bear walks and growl; she will pretend to be her cousin Taylor who is just learning to walk and ask me to walk her around the house in the same way that Aunt Kim walks Taylor around the house; and she will sometimes pretend to be Lea and mimic her babbling and crawling). That's fine--it's something to build on. But I am more concerned that Hallie is merely doing a lot of parallel playing at school, and, once again, those questions about whether she is merely delayed or whether this is a sign of some underlying disorder keep cropping up in my head.
I think I will have an opportunity to help with some of this. On Friday, when I was picking up Hallie from school, one of the other moms at school invited us to go to the playground across the street from the preschool. Apparently, a whole bunch of moms bring their kids here at three o'clock so they can play out their sillies. The mom who approached me told me that her husband had noticed how enthusiastic Hallie was about greeting their son when he arrived at school. She wondered whether Hallie was in his class (she is not; he's one of the older kids but Hallie is so tall that she is frequently mistaken to be four, which sort of sucks since it makes her seem even more delayed). But Hallie had recently added M. (her son) to the list of friends whom she rattles off to us each night (we were thrilled about this addition because it means that Hallie has varied her routine). And so, for lots of reasons, I was very happy to join the others on the playground.
Even though Lea was awake the entire time, she was (and is) such a good baby and she was content to hang out in the stroller, feed herself a bottle, and flirt with the moms (aside: I am grateful that Lea is so easy-going but feel guilty that parenting Hallie often means that Lea is parenting herself. She is getting very good at holding and tipping up her own bottle, which is a skill that Hallie didn't develop until some time after age 1.5 or so).
Hallie mostly did her own thing and did not mix it up with the other kids. I tried to get her to hang out with the others, or at least buzz around in their vicinity, but she sort of had her own agenda, which involved swinging and spinning on the swings for a more than average amount of time and borrowing a stroller with a teddy bear from another little girl (I had her ask the girl, and then offer the girl turns with her own stroller, which she did somewhat grudgingly and with a few tears).
At some points, the others were over at the swings, too, and she copied what her classmates were doing. And at one stage, when they were all over by the slides, she softly whispered in a voice that was only audible to me, "c'mon guys let's swing." But she is shy and her paralyzed vocal cord doesn't lend itself well to screaming across a big playground. Still, it was a good sign. She knows that they are there and she wants to figure out how to play with them (and she wants to call the shots on how they play, which is something she does with some of her other friend's, like Eliza Grace, Alex, her cousins, or Karina when she pops in unexpectedly). Without being too helicopter-ish, I will try to teach her how to approach her peers. I may say something to the sympathetic mom who invited us to join them so she knows why I am doing this and not just chatting about Philly politics and school stuff, our cute kids, and how much the world is going to a hand basket with the other moms who hang back in a clump while their kids play independently and work it out for themselves. This is complicated: I know that I shouldn't have to explain why I am participating differently in my kid's playtime than they are, but I somehow feel compelled to do so. As much as I don't want Hallie to be seen as different from the others, I nonetheless do feel like explaining why I am managing things a bit for her is not rooted in my desire to coddle her so much as my desire to help her skills progress in a way that will, hopefully, allow her to manage things for herself down the road.
Anyway, if you have managed to make it through this tedious and rambling post, I commend you. This was mostly written to help me sort out the things about which we have been thinking and the issues we've recently been facing. If you have any insight or ideas, we'd love to hear them. And, rest assured, not all is falling apart completely around here: both kids are smart and adorable and we really are enjoying them. On the Hallie smarts: we had CNN on the other day (a rare thing, since our TV is mostly tuned to Noggin and Sprout) and Obama came on to advocate health care reform. Hallie turned to the TV and pointed and said: "Obama!" I think I told her his name twice leading up to the election and once or twice since then. She's got a great memory and excellent capacity to attach names and faces, which is decidedly not an autistic trait. On the Lea smarts: the kid is figuring out how to push herself up into a standing position and wants desperately to do this while not holding onto anything. While this presents her with some personal danger (she's gone boink a few times), she's very much figuring out how to negotiate her own universe and demonstrating a lot of independence. At the same time, she is a most engaged baby who follow us around using her power army crawl and when she realizes that she's caught up with us/found us, flashes us this huge and very winning smile.
And Lea just got her first tooth. Can't see it yet, but we can definitely feel it. I am not sure that this makes her smarter but it will help her munch down on her preferred foods (pretzels, graham crackers, bagels, and cheerios--she's skipping baby food, we think) much more easily. And this kid loves to eat, which makes us very relieved.
To reward the fact that you've stuck with this, here's a couple of shots of Hallie taken by Sharon at the playground last weekend:
And one of Hallie 'reading' to Lea in bed last week:
OK, I'll end here. It's eight am and I've been up since five and desperately need a cup of coffee...
Tuesday, September 15, 2009
Government Insurance---A Personal View
We think a lot about health insurance in our family and, given the ongoing debate about government-funded and -run health insurance, we think it's useful and illustrative to share our experience with those of you who read this blog. We don't want to get into vitriolic debates about the issue--just tell you our story.
Basically, from what we can glean, we were very lucky to live in Pennsylvania when Hallie and Olivia made their extremely premature appearance at 23 weeks and 4 days, gestational age. All premature infants whose birth weight is under 2 lbs. 10 ounces (1500 grams) are defined as disabled by the Social Security Administration , regardless of the state in which they reside. This entitles them to payments of 30 dollars a month from Social Security while they are hospitalized. This doesn't cover much (in our case, parking a at the hospital was eight dollars a day at the reduced parent rate, so it didn't even cover a week's worth of stowing our car in the garage). But the issue wasn't the money; qualifying for Social Security allowed us to receive Medicaid for Hallie (although not for Olivia, since she never made it to a month of life). We didn't really understand this at the time, but the value of this government program for those of us with kids who faced multi-million dollar NICU bills and lots and lots of ongoing care by medical specialists is far from negligible.
Hallie's total NICU bill amounted to around 1.7 million dollars and Olivia's, for her short eighteen days of life, was around $300,000. At the time, we were very lucky to have been able to afford the best, and by far the most expensive plan offered by Sharon's former employer. The premiums were quite high, but it had the best provisions for fertility treatment, so we opted for it. That was a good decision since it kept our NICU costs at a minimum and, even more importantly, did not have a lifetime maximum on hospitalization coverage or an 80/20 payment provision that would have left us with a staggering bill that we could not have even covered had we sold our home and maxed out our credit cards.
Even though we had a comparatively small bill from the NICU, the costs of having a micropreemie are prohibitive. Once Hallie came home, we were faced with multiple visits to pediatricians and specialists per week during those first few months. She saw a pulmonologist, gastroenterologist, ophthalmologist, and ear nose and throat specialist for her crappy lungs, poorly functioning GI system, eyes that had sustained Retinopathy of Prematurity, and her paralyzed vocal cord several times apiece between October 2006 and February 2007. She had an upper GI, endoscopy, hearing test, several swallow studies, and a bunch of other specialized tests done during that period. She also saw a lot of her pediatrician -- culminating in twice weekly visits between April 2007 and October 2007 when we trying to figure out why she was always "sick" and constantly vomiting. On average, she saw two doctors per week, and those copays of 25 dollars apiece, plus copays for outpatient testing and various medicines would have crippled us (at one point she was on six different meds at once; we are now down to only four maintenance drugs and one rescue drug). Hallie was also hospitalized twice that first year at home. Her hospital stays do not begin to rival some of those of her peers, but between the stays, ER visits (and there were several that did not result in hospitalization), and testing she had done, the costs were considerable. Conservatively, we would have been paying on average 300 dollars a month for all this, plus parking fees at the hospital, were it not for the fact that Hallie was able to keep her medicaid once she came home from the NICU.
It doesn't seem fair to us that Pennsylvania residents are able to do this whereas residents of many other states cannot avail themselves of such a program, but in Pennsylvania, children with disabilities benefit from what is called the PA-95 Medical Assistance Loophole for disabled children. This program allows kids with disabilities, regardless of their or their parents' assets and income, to receive medical assistance, or medicaid, paid for by the state (in other words, the taxpayers of this state).
Medicaid covered the NICU copay and the copays for all the specialists and Hallie's primary care physician and it covered all of her prescription drug costs and hospital bills. It would have even reimbursed us for transportation costs though we never asked them to do this.
This was important when we had good coverage for Hallie under Sharon's plan at work but it became imperative once Sharon switched jobs and was not covered by insurance under her new job until three months had elapsed. (The one stipulation that Medicaid in Pennsylvania places upon those who use it is that, if you have private insurance, this must be billed before Medicaid jumps in to close the gap).
This happened on the eve of the onset of RSV season. I was able to get Hallie insured under my group plan from work but my insurance (which is my employer's best plan) is considerably worse than Sharon's was and it refused to cover synagis--which help boost immunity against RSV--for Hallie. Medicaid stepped in and paid the $2000 per month that these injections cost. My insurance would not allow us to take Hallie to her pediatrician at CHOP (even though his practice is in network) because its reviewers claimed that a pediatrician is a specialist and not a Primary Care Physician. The insurance folks insisted that we take Hallie to a general practioner instead but we felt that this would jeopardize her health if only because most general practitioners have no experience in treating micropreemies. So Medicaid picked up all of Hallie's doctor bills.
Once Sharon's new insurance from her new job kicked in, Medicaid remained a godsend to us. Sharon's new insurance allows for very few therapy visits (Occupational therapy, Physical therapy, and Speech therapy) and only approved 10 visits to the OT and eight to the feeding therapist, lifetime. In contrast, Medicaid allows Hallie unlimited visits to these therapists and this has enabled her to make a lot of progress on some of her Sensory Processing issues.
The only thing that we need for all of this assistance is a referral from our pediatrician. We have experienced no rationing of medical and psychological care and we never actually see most bills--Medicaid just takes care of them.
I never really had any experience with a government-run medical system before (we earn too much money and it's only recently that my mom, who is elderly, has had to deal with Medicare). But we are favorably impressed.
Basically, from what we can glean, we were very lucky to live in Pennsylvania when Hallie and Olivia made their extremely premature appearance at 23 weeks and 4 days, gestational age. All premature infants whose birth weight is under 2 lbs. 10 ounces (1500 grams) are defined as disabled by the Social Security Administration , regardless of the state in which they reside. This entitles them to payments of 30 dollars a month from Social Security while they are hospitalized. This doesn't cover much (in our case, parking a at the hospital was eight dollars a day at the reduced parent rate, so it didn't even cover a week's worth of stowing our car in the garage). But the issue wasn't the money; qualifying for Social Security allowed us to receive Medicaid for Hallie (although not for Olivia, since she never made it to a month of life). We didn't really understand this at the time, but the value of this government program for those of us with kids who faced multi-million dollar NICU bills and lots and lots of ongoing care by medical specialists is far from negligible.
Hallie's total NICU bill amounted to around 1.7 million dollars and Olivia's, for her short eighteen days of life, was around $300,000. At the time, we were very lucky to have been able to afford the best, and by far the most expensive plan offered by Sharon's former employer. The premiums were quite high, but it had the best provisions for fertility treatment, so we opted for it. That was a good decision since it kept our NICU costs at a minimum and, even more importantly, did not have a lifetime maximum on hospitalization coverage or an 80/20 payment provision that would have left us with a staggering bill that we could not have even covered had we sold our home and maxed out our credit cards.
Even though we had a comparatively small bill from the NICU, the costs of having a micropreemie are prohibitive. Once Hallie came home, we were faced with multiple visits to pediatricians and specialists per week during those first few months. She saw a pulmonologist, gastroenterologist, ophthalmologist, and ear nose and throat specialist for her crappy lungs, poorly functioning GI system, eyes that had sustained Retinopathy of Prematurity, and her paralyzed vocal cord several times apiece between October 2006 and February 2007. She had an upper GI, endoscopy, hearing test, several swallow studies, and a bunch of other specialized tests done during that period. She also saw a lot of her pediatrician -- culminating in twice weekly visits between April 2007 and October 2007 when we trying to figure out why she was always "sick" and constantly vomiting. On average, she saw two doctors per week, and those copays of 25 dollars apiece, plus copays for outpatient testing and various medicines would have crippled us (at one point she was on six different meds at once; we are now down to only four maintenance drugs and one rescue drug). Hallie was also hospitalized twice that first year at home. Her hospital stays do not begin to rival some of those of her peers, but between the stays, ER visits (and there were several that did not result in hospitalization), and testing she had done, the costs were considerable. Conservatively, we would have been paying on average 300 dollars a month for all this, plus parking fees at the hospital, were it not for the fact that Hallie was able to keep her medicaid once she came home from the NICU.
It doesn't seem fair to us that Pennsylvania residents are able to do this whereas residents of many other states cannot avail themselves of such a program, but in Pennsylvania, children with disabilities benefit from what is called the PA-95 Medical Assistance Loophole for disabled children. This program allows kids with disabilities, regardless of their or their parents' assets and income, to receive medical assistance, or medicaid, paid for by the state (in other words, the taxpayers of this state).
Medicaid covered the NICU copay and the copays for all the specialists and Hallie's primary care physician and it covered all of her prescription drug costs and hospital bills. It would have even reimbursed us for transportation costs though we never asked them to do this.
This was important when we had good coverage for Hallie under Sharon's plan at work but it became imperative once Sharon switched jobs and was not covered by insurance under her new job until three months had elapsed. (The one stipulation that Medicaid in Pennsylvania places upon those who use it is that, if you have private insurance, this must be billed before Medicaid jumps in to close the gap).
This happened on the eve of the onset of RSV season. I was able to get Hallie insured under my group plan from work but my insurance (which is my employer's best plan) is considerably worse than Sharon's was and it refused to cover synagis--which help boost immunity against RSV--for Hallie. Medicaid stepped in and paid the $2000 per month that these injections cost. My insurance would not allow us to take Hallie to her pediatrician at CHOP (even though his practice is in network) because its reviewers claimed that a pediatrician is a specialist and not a Primary Care Physician. The insurance folks insisted that we take Hallie to a general practioner instead but we felt that this would jeopardize her health if only because most general practitioners have no experience in treating micropreemies. So Medicaid picked up all of Hallie's doctor bills.
Once Sharon's new insurance from her new job kicked in, Medicaid remained a godsend to us. Sharon's new insurance allows for very few therapy visits (Occupational therapy, Physical therapy, and Speech therapy) and only approved 10 visits to the OT and eight to the feeding therapist, lifetime. In contrast, Medicaid allows Hallie unlimited visits to these therapists and this has enabled her to make a lot of progress on some of her Sensory Processing issues.
The only thing that we need for all of this assistance is a referral from our pediatrician. We have experienced no rationing of medical and psychological care and we never actually see most bills--Medicaid just takes care of them.
I never really had any experience with a government-run medical system before (we earn too much money and it's only recently that my mom, who is elderly, has had to deal with Medicare). But we are favorably impressed.
Wednesday, September 9, 2009
Another Let Down
Well, my hunch and fears have materialized: Hallie's excellent PCA (Personal Care Assistant) has, indeed, quit on her. I sensed that something was up when she did not call me back after not appearing at school last Friday. It took until Sunday afternoon to track her down, and when L. picked up the phone, she sounded distant and a bit odd to me. Trying to give her the benefit of the doubt, I chalked this up to her 18 month old daughter being very ill and accepted her excuse that she was too busy to call me in advance to explain that she would not be attending school with Hallie on Friday. But this did not really explain why she did not return any of my calls to her. She told me that she would know more on Tuesday and call me then.
Since Hallie had school today, I couldn't drop the ball and not contact Elwyn this morning to let Hallie's service coordinator know what was up. We at least needed to locate a substitute to attend school with Hallie on Tuesday and Wednesday and perhaps the rest of this week while L.'s daughter was still hospitalized. So I was on the phone, leaving messages for Hallie's service coordinator and her supervisor bright and early this morning.
The service coordinator finally got back to me around 11 am and promised me she'd track down the person at the placement agency responsible for securing a PCA for Hallie. (Yes, there are A LOT of middlemen in this process and that is part of the problem. On the one hand, it means that a lot of phone tag is involved in the process and, on the other, I am sure that it means that the PCAs themselves earn a whole lot less than the agency receives for their services).
Anyway, I heard back from her at 2pm (an hour before Hallie's school day begins on Tuesdays). She informed me that L. had taken a permanent job and that the agency representative had put out an emergency call and found a replacement for L. who was "very reliable and had been with him for years." She will be starting tomorrow, to work with Hallie "indefinitely."
I hate to parse words (well, not really; indeed, much of my professional identity revolves around parsing words), but I have some reservations about the use of the terms "reliable" and "indefinite". Pardon my considerable skepticism, but I will believe these things if they come to pass (notice my reluctance to use the phrase "when they come to pass").
So, tomorrow, we will need to meet someone new and I will have to pass off Hallie to the care of yet another someone who does not know her. I will have to "train" this person (the official mediation agreement includes a statement allowing four hours of training for each new PCA but this never happened with A., the first PCA, because she flaked on us very quickly or L., the second, who did not require training because she "got it.") And I will have to pray that this new person is 1. sensitive and decent and deals well with Hallie, who is, thankfully, very easy to deal with 2. does her job correctly, which not only means standing back and letting Hallie do her thing and intervening to redirect her when needed but also helping to facilitate Hallie's communication and socialization with her peers and growth more generally. Oh yeah, and I hope she actually does show up and other basic stuff like that.
We are very disappointed. L. really was a good PCA and it was during her brief tenure with Hallie that Hallie experienced huge social growth. She also was getting the potty training thing underway. And Hallie loved her. And, like so many others, she has just disappeared on Hallie without a trace or so much as a good bye.
Hallie's teacher was dismayed when I told her about this when I dropped Hallie off to school today. The YCCA has been great: they have bent their sensible rule for Hallie so many times (the director quite rightly believes that a real education for Hallie right now involves Hallie having a one-on-one support/shadow person and technically we need to keep her home if the aide fails to materialize). Ms. Kerry, Hallie's teacher, was fine with Hallie attending today (and last Friday afternoon) without a one-on-one, but it makes things harder for them and for Hallie. Ms. Kerry could not believe that someone who cared about kids would just drop the ball on one of them. The least the aide could have done was given us notice and Elwyn time to find a suitable replacement. I do understand the economics involved and that it is better to have a full-time job than it is to have several part-time positions, but the way that L. handled things was simply and purely unprofessional.
We are so grateful for the YCCA: the teachers there are all caring professionals who put the kids first. We are very happy (and relieved) that we chose to place Hallie at this school and fight the good fight with Elwyn over this. Even though the school is more expensive than the "free" alternative with which they would have provided us, we are more than happy to have the headache of absorbing the extra cost since we know that our kiddo is safe and well cared for at the YCCA. I don't even want to imagine what might have happened to Hallie had her PCA gone AWOL at the reverse mainstream "free" school or even a Head Start program with teachers who are less caring and in control and where Hallie is just another kid with special needs who cannot articulate her needs and who therefore doesn't count (and who cannot tell on them).
Despite L.'s absence, Hallie had a great time at school today. She was eager to go to "fun, fun preschool." She woke up from her nap and told me "I go to preschool now" and got her shoes on and raced out to the stroller. When I dropped her off, she ran to join her friends who were in the playground and said hi to each one fo them personally. While I was talking to Kerry, she grabbed a ball and initiated a game of catch with one kid, hopped on a trike and rode that for a few minutes, and went off to talk with another clump of children. She had a great time and only experienced a rare two minute meltdown at 5:26 when one of her best friends was picked up by her daddy (I came in right after Ella left the building and Hallie was fine again). The meltdown was no doubt related to Hallie's exhaustion and lack of napping over this long holiday weekend. Getting her back on her schedule will help enormously with short-circuiting this rare meltdown stuff.
In other Hallie news: yesterday Hallie stubbed her toe while running through the dining room and ran over to us saying "My foot hurts!" We were thrilled at this. I know this sounds strange, but this was the first time that Hallie was able to articulate that she was hurt and what part of her body, specifically, was ailing her.
Hallie also had a phenomenal Floortime/DIR session today. She was chatty; closed many, many 'circles of communication'; and exhibited a lot of engagement with me and Steve, her psychologist. Steve and I were both extremely impressed with her.
Eating is so-so, at best. But she has not vomited at all lately (yes, I will probably regret this disclosure) and we are now up to 176 days of spew-free bliss.
Since Hallie had school today, I couldn't drop the ball and not contact Elwyn this morning to let Hallie's service coordinator know what was up. We at least needed to locate a substitute to attend school with Hallie on Tuesday and Wednesday and perhaps the rest of this week while L.'s daughter was still hospitalized. So I was on the phone, leaving messages for Hallie's service coordinator and her supervisor bright and early this morning.
The service coordinator finally got back to me around 11 am and promised me she'd track down the person at the placement agency responsible for securing a PCA for Hallie. (Yes, there are A LOT of middlemen in this process and that is part of the problem. On the one hand, it means that a lot of phone tag is involved in the process and, on the other, I am sure that it means that the PCAs themselves earn a whole lot less than the agency receives for their services).
Anyway, I heard back from her at 2pm (an hour before Hallie's school day begins on Tuesdays). She informed me that L. had taken a permanent job and that the agency representative had put out an emergency call and found a replacement for L. who was "very reliable and had been with him for years." She will be starting tomorrow, to work with Hallie "indefinitely."
I hate to parse words (well, not really; indeed, much of my professional identity revolves around parsing words), but I have some reservations about the use of the terms "reliable" and "indefinite". Pardon my considerable skepticism, but I will believe these things if they come to pass (notice my reluctance to use the phrase "when they come to pass").
So, tomorrow, we will need to meet someone new and I will have to pass off Hallie to the care of yet another someone who does not know her. I will have to "train" this person (the official mediation agreement includes a statement allowing four hours of training for each new PCA but this never happened with A., the first PCA, because she flaked on us very quickly or L., the second, who did not require training because she "got it.") And I will have to pray that this new person is 1. sensitive and decent and deals well with Hallie, who is, thankfully, very easy to deal with 2. does her job correctly, which not only means standing back and letting Hallie do her thing and intervening to redirect her when needed but also helping to facilitate Hallie's communication and socialization with her peers and growth more generally. Oh yeah, and I hope she actually does show up and other basic stuff like that.
We are very disappointed. L. really was a good PCA and it was during her brief tenure with Hallie that Hallie experienced huge social growth. She also was getting the potty training thing underway. And Hallie loved her. And, like so many others, she has just disappeared on Hallie without a trace or so much as a good bye.
Hallie's teacher was dismayed when I told her about this when I dropped Hallie off to school today. The YCCA has been great: they have bent their sensible rule for Hallie so many times (the director quite rightly believes that a real education for Hallie right now involves Hallie having a one-on-one support/shadow person and technically we need to keep her home if the aide fails to materialize). Ms. Kerry, Hallie's teacher, was fine with Hallie attending today (and last Friday afternoon) without a one-on-one, but it makes things harder for them and for Hallie. Ms. Kerry could not believe that someone who cared about kids would just drop the ball on one of them. The least the aide could have done was given us notice and Elwyn time to find a suitable replacement. I do understand the economics involved and that it is better to have a full-time job than it is to have several part-time positions, but the way that L. handled things was simply and purely unprofessional.
We are so grateful for the YCCA: the teachers there are all caring professionals who put the kids first. We are very happy (and relieved) that we chose to place Hallie at this school and fight the good fight with Elwyn over this. Even though the school is more expensive than the "free" alternative with which they would have provided us, we are more than happy to have the headache of absorbing the extra cost since we know that our kiddo is safe and well cared for at the YCCA. I don't even want to imagine what might have happened to Hallie had her PCA gone AWOL at the reverse mainstream "free" school or even a Head Start program with teachers who are less caring and in control and where Hallie is just another kid with special needs who cannot articulate her needs and who therefore doesn't count (and who cannot tell on them).
Despite L.'s absence, Hallie had a great time at school today. She was eager to go to "fun, fun preschool." She woke up from her nap and told me "I go to preschool now" and got her shoes on and raced out to the stroller. When I dropped her off, she ran to join her friends who were in the playground and said hi to each one fo them personally. While I was talking to Kerry, she grabbed a ball and initiated a game of catch with one kid, hopped on a trike and rode that for a few minutes, and went off to talk with another clump of children. She had a great time and only experienced a rare two minute meltdown at 5:26 when one of her best friends was picked up by her daddy (I came in right after Ella left the building and Hallie was fine again). The meltdown was no doubt related to Hallie's exhaustion and lack of napping over this long holiday weekend. Getting her back on her schedule will help enormously with short-circuiting this rare meltdown stuff.
In other Hallie news: yesterday Hallie stubbed her toe while running through the dining room and ran over to us saying "My foot hurts!" We were thrilled at this. I know this sounds strange, but this was the first time that Hallie was able to articulate that she was hurt and what part of her body, specifically, was ailing her.
Hallie also had a phenomenal Floortime/DIR session today. She was chatty; closed many, many 'circles of communication'; and exhibited a lot of engagement with me and Steve, her psychologist. Steve and I were both extremely impressed with her.
Eating is so-so, at best. But she has not vomited at all lately (yes, I will probably regret this disclosure) and we are now up to 176 days of spew-free bliss.
Monday, September 7, 2009
Totally Sensational--Hallie and Sensory Processing Disorder
It's become clear to us, over time, that so many of Hallie's issues stem from her out of whack sensory system. Even though I've read, re-read, and re-re-read The Out of Sync Child, I must admit that I remain a bit baffled by how Sensory Processing Disorder and precisely how it works to impede things like fluid communication and socialization (things like eye contact, playing well with others, conversational skills); gross motor movement (like running and jumping and walking); fine motor skills (like bilateral hand use); and eating. Here is a not bad description of sensory processing disorder for those who want to read more about this.
What I do understand is this: Hallie is under-responsive to some kinds of sensory stimuli, like those involving touch and vestibular movement, and hence craves sensation (in other words, she is a sensory seeker) to get enough information to negotiate the world well. Here are a couple of easy examples: she walks and runs with a heavy foot not only because she is low tone and unable to walk and run in any other way (although she is low tone and this complicates matters further) but also because walking and running in this way gives her nerves (and sends her brain signals) the information that she needs and craves. It looks funny and it may put some undue pressure on her joints and growing limbs, but it also helps her organize herself better. Another example: Hallie likes to bury herself in things and pour things on herself---these things can be pillows, lego bricks, balls, stuffed animals, whatever. Whenever she needs to calm down, this is what she does to help regulate herself.
Hallie is also over-responsive to some other kinds of stimuli. She is a visual learner and her visual sense is a bit over-responsive. What this means is that she is easily distracted by the things that she sees--whether that's the television (a big distraction for her) or things going on in other parts of the playground, or people and animals walking down the block. She sees these things out of the corner of her eyes and is forced by her sensory system to turn around and look or to run off in the direction of these stimuli. This can be a major problem, since it often means that Hallie is constantly turning her head to the side and looking over her back when walking down the street (which leads to falling, banging into things, and not paying attention to the things that she needs to heed, like oncoming vehicles) and it also can interfere with the learning process (like not being able to listen to a teacher during storytime because something else in the room catches her eye).
What we need to do as parents is figure out how to provide her with the stimulation that she requires to receive and process information in a way that doesn't get in the way of learning, safety, and other good things like that. We've been working in Floortime/DIR and OT on these skills and I have to say that whatever we are doing is beginning to work. I watch Hallie carefully to learn what helps, and what does not help, and then we try to do those things at home. At school, we'll have to work with OTs to design adaptations that allow her to retain focus (we hope that these are minor: things like placement in the classroom near the teacher and away from doors and windows where there might be more movement and consequently more visual and auditory distractions; having Hallie sit on sensory cushions that provide her with input; the use of weighted beanbag 'snakes' or stuff like that on her shoulders that help her keep still; fidgets for her hands, etc). And she may just need to get up and run around every now and then to regulate herself so that she can return to her desk and learn. All of these modifications need to be written into IEPs to make sure that everyone understands why she needs these things and how they function and so that her teachers don't just end up thinking that she is a flighty wild-child who doesn't sit still. But that's still in the future.
Back to the present: I noticed during Floortime/DIR this past week that Hallie adored the sensation of the smooth side of a Mondo Inside-Out Spiky Stretchy ball on her feet and hands and that she really grooved on walking on the spikey surface (on the outside--not the inside...that makes her very unhappy). So, like any good parent who thinks they might just open a sensory gym in the future, I went out and got her some (these join her collapsible tunnel, play-house, inflatable ball pit, and gym mat). The ones we ordered were a little smaller than the ones we used at therapy but she enjoyed them nonetheless:
Hallie asks for these all the time (they are a restricted toy since Hallie also finds the spikes irresistible as a biting item...the knobby chewy tube I just bought her and the long silicone chewy tube she received from her feeding therapist do not have the same caché for her, though Lea quite likes them). We hoped that having the spikey balls on her feet during meal time might help her eat more appropriately (in terms of quantity and in terms of not using her food as a sensory plaything) but no dice on this one, so far. Still, we're happy with this addition to our therapy tools/toy box and will probably get her some bigger ones if we see them around.
As I said earlier, Hallie has also devised a variety of ways of providing herself with sensory input that she needs in our (very small) house using everyday objects. She used to take out all of her stuffed animals and creatures and place them in the middle of our living room and roll around on top of them; then she moved to placing them on the couch (sometimes removing the couch cushions first), along with balls, and rolling around in these; then she decided to place them behind the couch and lie on top of them, sandwiched between the couch and the wall. I am particularly fond of this variant since it doesn't involve any cleaning up of toys at the end. I'll try to get a photo of this to post.
What I do have a picture of, though, is Hallie and Eliza Grace's reaction to pillows being piled on top of them on the big chair in the living room. One of the nice things about your child having speech and beginning to communicate is that she can tell you what she needs. On Friday night, after dinner, Hallie requested pillow piling. She built her new turn-taking skills into the process by directing us: "now Hallie turn!", "now Eliza turn!", "now Hallie turn!" , "now Eliza turn!" When the big pillows were equally distributed on top of the girls, the two of them kicked them off and hooted and smiled like crazy and then the process began again.
They were so happy after all that pillow-piling that they ended with a nice smoochy.
Anyway, Hallie doesn't just crave tactile stimulation but she also craves vestibular input--basically this is anything involving motion and balance and includes stuff like swinging (Hallie's favorite activity), jumping up and down, and spinning. That's why she loves fast rides, roller coasters, and the like. At home, Hallie enjoys piling the aforementioned pillows in front of the big chair and jumping off of the chair onto them.
At the playground, Hallie enjoys typical playground activities more than your average kid and certainly more than children who are over-responsive to sensory input (that would include me...I am pretty sure, after reading a lot about dysfunctional sensory processing that I am the opposite of Hallie in terms of sensory profiles. That's why I hate heights, fast motion, uncontrolled wheeled activities, and get dizzy very easily). Now that Hallie's body works better--her gross and fine motor skills are improving--she is much more effective at meeting these needs on the playground.
Hallie and Eliza had plenty of opportunity to get all the sensory input they craved at Smith Playground yesterday:
But their favorite activity was sliding down Smith's giant wooden slide:
They would have done this forever!
Even little Lea got in on the action at Smith Playground, even if she was a bit too young to enjoy the slide (actually, she would have enjoyed it; we just were not about to put her on a burlap sack and let her slide down what amounts to a giant bowling alley on a fairly steep incline):
And she also got to get in on the teeter totter action:
Anyway, a great day was had by all. After Eliza and Anne departed for New Jersey to visit Nana (Anne's mom and Eliza's grandmother), we headed home and rested (no nap for Hallie, alas) in preparation for the arrival of Hallie's PT. After seeing Hallie negotiate the playground with her friend Alex (who came to visit and dine with us yesterday evening), the PT decided that she had mis-assessed Hallie. Yes, Hallie is low-tone and, yes, her left side is weaker than her first. But she does jump with both feet off the ground and she runs funny because of her sensory stuff and not because she has too. Ditto with toe-walking. That's why it's called idiopathic toe-walking in her case. Her heels are tight and can use some stretching. But she can probably get away with something like a Sure Start shoe inserts or Polly Wogs rather than really extensive bracing/orthotics. That's a relief because Hallie, who is a bit of a shoe queen, would bristle at wearing extensive orthotics. We will have to buy her more supportive shoes, too, I think: she walks so much better in her Keens than she does in your average Stride Rite shoes, but we're happy to do this. Anyway, our appointment with the orthopedist is in a couple of weeks and we'll know more then. But we are feeling better about this based on what the PT saw yesterday.
What I do understand is this: Hallie is under-responsive to some kinds of sensory stimuli, like those involving touch and vestibular movement, and hence craves sensation (in other words, she is a sensory seeker) to get enough information to negotiate the world well. Here are a couple of easy examples: she walks and runs with a heavy foot not only because she is low tone and unable to walk and run in any other way (although she is low tone and this complicates matters further) but also because walking and running in this way gives her nerves (and sends her brain signals) the information that she needs and craves. It looks funny and it may put some undue pressure on her joints and growing limbs, but it also helps her organize herself better. Another example: Hallie likes to bury herself in things and pour things on herself---these things can be pillows, lego bricks, balls, stuffed animals, whatever. Whenever she needs to calm down, this is what she does to help regulate herself.
Hallie is also over-responsive to some other kinds of stimuli. She is a visual learner and her visual sense is a bit over-responsive. What this means is that she is easily distracted by the things that she sees--whether that's the television (a big distraction for her) or things going on in other parts of the playground, or people and animals walking down the block. She sees these things out of the corner of her eyes and is forced by her sensory system to turn around and look or to run off in the direction of these stimuli. This can be a major problem, since it often means that Hallie is constantly turning her head to the side and looking over her back when walking down the street (which leads to falling, banging into things, and not paying attention to the things that she needs to heed, like oncoming vehicles) and it also can interfere with the learning process (like not being able to listen to a teacher during storytime because something else in the room catches her eye).
What we need to do as parents is figure out how to provide her with the stimulation that she requires to receive and process information in a way that doesn't get in the way of learning, safety, and other good things like that. We've been working in Floortime/DIR and OT on these skills and I have to say that whatever we are doing is beginning to work. I watch Hallie carefully to learn what helps, and what does not help, and then we try to do those things at home. At school, we'll have to work with OTs to design adaptations that allow her to retain focus (we hope that these are minor: things like placement in the classroom near the teacher and away from doors and windows where there might be more movement and consequently more visual and auditory distractions; having Hallie sit on sensory cushions that provide her with input; the use of weighted beanbag 'snakes' or stuff like that on her shoulders that help her keep still; fidgets for her hands, etc). And she may just need to get up and run around every now and then to regulate herself so that she can return to her desk and learn. All of these modifications need to be written into IEPs to make sure that everyone understands why she needs these things and how they function and so that her teachers don't just end up thinking that she is a flighty wild-child who doesn't sit still. But that's still in the future.
Back to the present: I noticed during Floortime/DIR this past week that Hallie adored the sensation of the smooth side of a Mondo Inside-Out Spiky Stretchy ball on her feet and hands and that she really grooved on walking on the spikey surface (on the outside--not the inside...that makes her very unhappy). So, like any good parent who thinks they might just open a sensory gym in the future, I went out and got her some (these join her collapsible tunnel, play-house, inflatable ball pit, and gym mat). The ones we ordered were a little smaller than the ones we used at therapy but she enjoyed them nonetheless:
Hallie asks for these all the time (they are a restricted toy since Hallie also finds the spikes irresistible as a biting item...the knobby chewy tube I just bought her and the long silicone chewy tube she received from her feeding therapist do not have the same caché for her, though Lea quite likes them). We hoped that having the spikey balls on her feet during meal time might help her eat more appropriately (in terms of quantity and in terms of not using her food as a sensory plaything) but no dice on this one, so far. Still, we're happy with this addition to our therapy tools/toy box and will probably get her some bigger ones if we see them around.
As I said earlier, Hallie has also devised a variety of ways of providing herself with sensory input that she needs in our (very small) house using everyday objects. She used to take out all of her stuffed animals and creatures and place them in the middle of our living room and roll around on top of them; then she moved to placing them on the couch (sometimes removing the couch cushions first), along with balls, and rolling around in these; then she decided to place them behind the couch and lie on top of them, sandwiched between the couch and the wall. I am particularly fond of this variant since it doesn't involve any cleaning up of toys at the end. I'll try to get a photo of this to post.
What I do have a picture of, though, is Hallie and Eliza Grace's reaction to pillows being piled on top of them on the big chair in the living room. One of the nice things about your child having speech and beginning to communicate is that she can tell you what she needs. On Friday night, after dinner, Hallie requested pillow piling. She built her new turn-taking skills into the process by directing us: "now Hallie turn!", "now Eliza turn!", "now Hallie turn!" , "now Eliza turn!" When the big pillows were equally distributed on top of the girls, the two of them kicked them off and hooted and smiled like crazy and then the process began again.
They were so happy after all that pillow-piling that they ended with a nice smoochy.
Anyway, Hallie doesn't just crave tactile stimulation but she also craves vestibular input--basically this is anything involving motion and balance and includes stuff like swinging (Hallie's favorite activity), jumping up and down, and spinning. That's why she loves fast rides, roller coasters, and the like. At home, Hallie enjoys piling the aforementioned pillows in front of the big chair and jumping off of the chair onto them.
At the playground, Hallie enjoys typical playground activities more than your average kid and certainly more than children who are over-responsive to sensory input (that would include me...I am pretty sure, after reading a lot about dysfunctional sensory processing that I am the opposite of Hallie in terms of sensory profiles. That's why I hate heights, fast motion, uncontrolled wheeled activities, and get dizzy very easily). Now that Hallie's body works better--her gross and fine motor skills are improving--she is much more effective at meeting these needs on the playground.
Hallie and Eliza had plenty of opportunity to get all the sensory input they craved at Smith Playground yesterday:
But their favorite activity was sliding down Smith's giant wooden slide:
They would have done this forever!
Even little Lea got in on the action at Smith Playground, even if she was a bit too young to enjoy the slide (actually, she would have enjoyed it; we just were not about to put her on a burlap sack and let her slide down what amounts to a giant bowling alley on a fairly steep incline):
And she also got to get in on the teeter totter action:
Anyway, a great day was had by all. After Eliza and Anne departed for New Jersey to visit Nana (Anne's mom and Eliza's grandmother), we headed home and rested (no nap for Hallie, alas) in preparation for the arrival of Hallie's PT. After seeing Hallie negotiate the playground with her friend Alex (who came to visit and dine with us yesterday evening), the PT decided that she had mis-assessed Hallie. Yes, Hallie is low-tone and, yes, her left side is weaker than her first. But she does jump with both feet off the ground and she runs funny because of her sensory stuff and not because she has too. Ditto with toe-walking. That's why it's called idiopathic toe-walking in her case. Her heels are tight and can use some stretching. But she can probably get away with something like a Sure Start shoe inserts or Polly Wogs rather than really extensive bracing/orthotics. That's a relief because Hallie, who is a bit of a shoe queen, would bristle at wearing extensive orthotics. We will have to buy her more supportive shoes, too, I think: she walks so much better in her Keens than she does in your average Stride Rite shoes, but we're happy to do this. Anyway, our appointment with the orthopedist is in a couple of weeks and we'll know more then. But we are feeling better about this based on what the PT saw yesterday.
Friday, September 4, 2009
Back to School...or The More Things Change the More they Seem the Same
Hallie returned to school bright and early this morning. While one might attribute the soft glow and ambient lighting (read: fuzziness) of this picture to creative editing, sadly this is not the case. Rather, both of Hallie's over-educated mothers were seemingly unable to realize that the greasy hands of their preschooler (who grabbed host of the camera last night) had dirtied the camera lens and not the view-finder. So, alas, we have no good shots of our little preschooler who, in contrast to the last time we tried to do this back in July, happily mugged for shots on the steps of our house and who clearly understood that she was headed off to preschool and was thrilled at the prospect.
Sharon and I walked Hallie and her stuff to school in the stroller while Hallie sat in her throne singing and talking to herself. We were filled with joy: this time around Hallie was so ready for school and was in her own element. She knew her teachers, most of the other children (there are some new additions to the YCCA roster but most of the kids in her class, the Blue Moons, had attended summer camp with her), and had her supports in place. Sharon and I hoped that we would be able to leave her at school with nary a tear (a real prospect since Hallie stopped crying when I dropped her off about ten days before camp ended) and in good hands whom we trusted.
Or so we thought. You can kind of guess where this is going based on the buildup, no?
Anyway, as it turns out, we had kind of a redux, with a few important distinctions (some good, one bad), of the very first day of summer camp. As on that day, Hallie's PCA (personal care assistant) was nowhere to be found. This time, at least, we knew the teachers and they knew Hallie and we were able to both leave, with the proviso that we send Nadia (our nanny/mother's helper) to assist Hallie during play time and meal time. Unfortunately, Nadia could not stay for the full day (we would have happily paid her to do so but she had other plans; she only works for us part time), but the teachers were willing to have Hallie there on her own for a couple hours of the day since she really is not a terribly disruptive little kid.
Like last time, I ran home and started some frantic phone calling. First, I called the aide herself. She is a very responsible, very professional person who has been doing a great job with Hallie and my sense was (and is) that some wires had gotten crossed somewhere, even though I had been over the schedule with her several times as I made the arrangements with Elwyn for her to be present several days before the Special Education 3-5 program begins here. (For whatever reason, and likely not a good one, Elwyn has decided that it's okay for the special ed kids to start school after all the typical kids do--in this case, a week after they do--and to have all of these random days off that typically developing kids do not. The logic here is, umm, impeccable: this all seems to be predicated on the notion that, if you have disabilities and delays, you quite obviously need less time in school rather than the same or more. But I digress).
Anyway, I called the aide at 9:05, when we discovered that she was not there, and again at 11:30, when she was still not there. I then called Elwyn, and of course could not get hold of a live person with whom to discuss this matter. I don't want to get the aide in trouble; like I said, she is really good with Hallie and really quite professional and I'd like this relationship to be an ongoing one. At the same time, my kid had no aide today and if this happens again on Tuesday and Wednesday (also non-service days, but Elwyn owes us lots of hours given the repeated absence of PCA #1), Hallie will not be able to attend school. She loves school and is learning a lot there and is making good progress and we want her to be able to attend. Heck, she deserves to be able to go to school with everyone else. (And we are, after all, paying for it, regardless of whether she misses a day because her aide is absent).
Part of me is quite worried about the aide, who has a sick one and a half year old and an autistic eight year old. I am concerned that something happened to one of the kids. But the other part of me knows that, as a professional, she would have or at least should have contacted me if this were the case. And a third part of me is anxious that, like so many others in Hallie's life (her former nanny, for one, but also one of her speech therapists), the aide is just going to drop off the face of the earth with no warning and prove herself as unreliable as the aforementioned others. This would cause a logistical headache (needing to begin this process all over again, needing to train yet another person to work with Hallie, existing once more on pins and needles that something is going to go wrong with the process, etc etc). It also provokes in me great sadness: how in the world is my sweet little kid supposed to learn love and trust when she is constantly let down by folks who state that they love her (as did the old nanny, as did the disappearing speech therapist) and who claim that they were eager to organize their lives (or at least their schedules) to accommodate Hallie because they cared for her so much, and who then just walk out of her life? Hallie has had a very long series of ongoing, intimate relationships with caregivers and therapists who have 'left her' in one way or another. I am not sure the extent to which she is aware of 'missing' these people, but I lament the end of these relationships even when there is some semblance of closure. I can only imagine (at least from my grown-up, not developmentally-delayed perspective) how much more traumatic this might be for a kid when there is no closure whatsoever and the caregiver/therapist in question just disappears one day without notice. Hopefully I'm just jumping the gun here/over-reacting (I have been known to do this on occasion), but this hits a raw spot for me.
Back to the practical, short-term situation: I'm not really sure what to do other than to call the aide, regularly but not constantly, and hope that I get a hold of her. If I don't, I will try to track her down first thing Tuesday morning (I'm not exactly sure how; I don't have the phone number of the agency with whom she works). So we're existing a bit on edge around here.
Happily, though, Hallie had a great first day back at school. She took leave of Sharon and I with no fuss and joined her friends and teacher in her group immediately. From Nadia's report, I know that she required little redirection to stay on task and that she did her arts and craft project (making a flag for Labor Day) completely independently. She had a great time in story time and music time; ate lunch with no complaint entirely on her own (it was her best meal of the day, ironically) and happily went down for her nap. Moreover, the teachers felt that she was no trouble at all for the couple of hours that she was there on her own. So all that is good.
I was so proud of our little girl and happily rewarded her with a mango water ice (which she ate entirely on her own, with gusto) during our walk home from school. We stopped in at the grocery store to pick up a few things, which did not quite please Hallie, who now lets me know this verbally. She is quite fond of the phrase, "Let's go home!" and uses it unsparingly these days.
Hallie was exhausted by the time school was over (we have to get her back on schedule; she was staying up a little later than usual during break) but remained in a good mood until dinner (during which she was over-tired and exhibiting some bad behavior, perhaps picked up from one of the other kids with special needs at the school who refuses to eat). Hallie went down to sleep easily and hopefully will wake up rejuvenated and eager to play with her friend Eliza Grace, who is coming to visit tomorrow.
Anyway, the day went well, all things considered, and we are pleased that Hallie loves school but anxious about what next week will bring. And we're kind of sick and tired of dealing with trying to coordinate all of the services and supports that Hallie needs, over and over again, seemingly without end in sight. Nevertheless, as is always the case, we'll do what we need to do to make this work.
Raising the Nicest Kid on the Block
Hallie's in the middle of a developmental explosion and we're loving it. As she communicates more, and more fluently, with us, it's become clear to us that we've managed to raise a little girl who has a great deal of empathy with others and who is generally helpful and nice. We're not really sure what we did right, but we could not be more pleased with the results.
The other day, I was preparing dinner in the kitchen while Lea was in the exersaucer and Hallie was playing in the living room. Hallie came running into the kitchen and announced to me: "I go help Baby Lea!" and ran back into the living room. Of course, 'help' can take many forms in the three year old mind, so I did what any moderately sane mother of a preschooler and infant would do in such a context: I followed Hallie, just in case her notion of 'helping Lea' differed from my own. What I saw was this:
Hallie, as she is now wont to do, was narrating to Lea: "Mmmmm...Water good! Drink water Lea!" And Lea, being the little sport that she is (and very adventurous and curious in her own right), was playing along. She tried her very best to master the art of drinking water from a straw cup but couldn't quite get it together. Still, she very much enjoyed chewing on the straw (something that her big sister gets a kick out of, too, which accounts for our many jagged silicone straws). And Hallie felt very helpful.
Hallie also enjoys trying to give Lea her bottle. I caught one shot of this on camera:
You'll notice that Hallie doesn't quite get the whole gravity thing so she isn't aware that she needs to tip the bottle at an angle so that the milk can flow. She also doesn't quite understand that Lea must latch onto the bottle to drink milk. So occasionally Hallie's ongoing efforts to provide Lea with her bottle at all points has led to a little spilled milk around here. (No crying over it, though. It's been a month since we had to supplement Lea's diet with some formula since it's impossible for Sharon to find sufficient time to pump at work, but Lea is still about 75% breast-milk fed and we no longer feel pressured or guilty about this since Lea is obviously thriving).
And Hallie is just generally a wonderful and adoring older sister. She loves to bring Lea toys (sometimes depositing these on top of Lea while she is asleep) and every morning when she wakes up, all she wants to do is hug and kiss and play with Lea. We took this shot of the girls (on Hallie's prompting) this morning (with Hallie very happily smiling for the camera, which is also a recent development):
And most days, when I go upstairs to get Hallie after she wakes up from her nap, she announces to me: "I go find Lea Pia!" (this is one of our nicknames for Lea) or "I find Baby Lea NOW!" And, if Lea is upset for some reason, she asks us to sing her, and chimes in on, the silly Lea Pia song that I made up for Lea. She vastly prefers this song to her own (which is equally silly and entitled "Hallie Go-Bally")
But Hallie's sweet streak is not reserved for Lea. It turns out that Hallie has become a very polite kid who is pretty good at sharing. I credit this not only to lessons learned at home but to the excellent teachers who emphasize this skill at her preschool (which she sorely misses and which starts up again tomorrow--though she was all prepared to return today...when I got her into the stroller to take her to feeding therapy today, she announced to me: "We going to fun preschool now!"). Case in point: this past weekend, Aunt Laura and the kids gave Hallie a Radio Flyer scooter as her belated birthday present. All the kids were excited by this and, even though Hannah and Adam got out their own more advanced Razor Scooters, they both were interested in taking turns on Hallie's shiny new red one. Hallie was a bit upset at first when Adam started to careen through the house on her scooter, but did her 'waiting sign' (we have taught her to sign "Wait" in ASL when she needs to wait for something and she now does this reflexively...it's a great sign since it allows one to fidget with one fingers which is pretty perfect for kids with sensory issues who have trouble waiting and need to do something with themselves in the meantime). When Adam returned on the scooter to where Hallie was standing, Hallie turned to him and said, "Now Hallie's turn, please!" Sharon convinced Adam to more or less graciously disembark and let Hallie have a ride around the house. Hallie took the scooter for a spin, returned to Adam, got off the scooter and said to him, "Now Adam's turn!" We were very proud of this behavior. Turn-taking is not something that comes naturally to kids (who are, after all, pretty darned egocentric) but somehow Hallie really has begun to assimilate this skill. She's demonstrated this recently at play with her peers and we couldn't be more pleased about this.
And speaking of playing with peers, this past weekend when we were down at the cousins', Hallie began to initiate play with them, and not just follow along or do parallel play. She did this again last night when Karina popped over for a bit. She was very comfortable saying "Come on, Karina," and showing Karina the toys in which she was interested and how she wanted to play with them. We're very much hoping that Hallie is able to do the same thing with her friends at school tomorrow.
And, speaking of tomorrow (which is, indeed today), I've got to go turn in so that we can get up early, feed Hallie breakfast, and get her off to school by nine.
But one last note on the feeding front: Hallie, who is very susceptible to peer pressure, decided to finish off Hannah's peanut butter sandwich on Saturday and had no bad reactions to it whatsoever. She's eaten bites of peanut butter sandwich a few times since then at home (she can make it through about a quarter to a third of one sandwich). This is exciting because it gives us a new protein source and one that is naturally packed with calories and fat and easy to bring to school (her school permits peanuts since there are no kids who are deathly allergic to them, at least at this point in time) and pretty darned age appropriate. And Hallie has been enjoying toast with butter (fake butter) and cheerios for breakfast a lot, too. She's also become a fan of spaghetti and other long noodles (like lo mein) and the other night had some spaghetti with tomato sauce that also contained a nice quantity of spinach and some Italian sausage. She even entertained the concept of eating a piece of broccoli that accompanied a veggie lo mein I bought for her at Whole Foods (she identified it, told me it looked like a tree, touched it to her lips, licked and nibbled it and announced "Mmm....broccoli good" before discarding it). She doesn't eat much, but she is eating enough. More importantly, we've taken much of the stress and pressure out of eating and hopefully this will make mealtimes more enjoyable for her. And, along with this, she continues to not have major vomiting episodes. We are up to 170 days without spew this year and are loving every day of it!
The other day, I was preparing dinner in the kitchen while Lea was in the exersaucer and Hallie was playing in the living room. Hallie came running into the kitchen and announced to me: "I go help Baby Lea!" and ran back into the living room. Of course, 'help' can take many forms in the three year old mind, so I did what any moderately sane mother of a preschooler and infant would do in such a context: I followed Hallie, just in case her notion of 'helping Lea' differed from my own. What I saw was this:
Hallie, as she is now wont to do, was narrating to Lea: "Mmmmm...Water good! Drink water Lea!" And Lea, being the little sport that she is (and very adventurous and curious in her own right), was playing along. She tried her very best to master the art of drinking water from a straw cup but couldn't quite get it together. Still, she very much enjoyed chewing on the straw (something that her big sister gets a kick out of, too, which accounts for our many jagged silicone straws). And Hallie felt very helpful.
Hallie also enjoys trying to give Lea her bottle. I caught one shot of this on camera:
You'll notice that Hallie doesn't quite get the whole gravity thing so she isn't aware that she needs to tip the bottle at an angle so that the milk can flow. She also doesn't quite understand that Lea must latch onto the bottle to drink milk. So occasionally Hallie's ongoing efforts to provide Lea with her bottle at all points has led to a little spilled milk around here. (No crying over it, though. It's been a month since we had to supplement Lea's diet with some formula since it's impossible for Sharon to find sufficient time to pump at work, but Lea is still about 75% breast-milk fed and we no longer feel pressured or guilty about this since Lea is obviously thriving).
And Hallie is just generally a wonderful and adoring older sister. She loves to bring Lea toys (sometimes depositing these on top of Lea while she is asleep) and every morning when she wakes up, all she wants to do is hug and kiss and play with Lea. We took this shot of the girls (on Hallie's prompting) this morning (with Hallie very happily smiling for the camera, which is also a recent development):
And most days, when I go upstairs to get Hallie after she wakes up from her nap, she announces to me: "I go find Lea Pia!" (this is one of our nicknames for Lea) or "I find Baby Lea NOW!" And, if Lea is upset for some reason, she asks us to sing her, and chimes in on, the silly Lea Pia song that I made up for Lea. She vastly prefers this song to her own (which is equally silly and entitled "Hallie Go-Bally")
But Hallie's sweet streak is not reserved for Lea. It turns out that Hallie has become a very polite kid who is pretty good at sharing. I credit this not only to lessons learned at home but to the excellent teachers who emphasize this skill at her preschool (which she sorely misses and which starts up again tomorrow--though she was all prepared to return today...when I got her into the stroller to take her to feeding therapy today, she announced to me: "We going to fun preschool now!"). Case in point: this past weekend, Aunt Laura and the kids gave Hallie a Radio Flyer scooter as her belated birthday present. All the kids were excited by this and, even though Hannah and Adam got out their own more advanced Razor Scooters, they both were interested in taking turns on Hallie's shiny new red one. Hallie was a bit upset at first when Adam started to careen through the house on her scooter, but did her 'waiting sign' (we have taught her to sign "Wait" in ASL when she needs to wait for something and she now does this reflexively...it's a great sign since it allows one to fidget with one fingers which is pretty perfect for kids with sensory issues who have trouble waiting and need to do something with themselves in the meantime). When Adam returned on the scooter to where Hallie was standing, Hallie turned to him and said, "Now Hallie's turn, please!" Sharon convinced Adam to more or less graciously disembark and let Hallie have a ride around the house. Hallie took the scooter for a spin, returned to Adam, got off the scooter and said to him, "Now Adam's turn!" We were very proud of this behavior. Turn-taking is not something that comes naturally to kids (who are, after all, pretty darned egocentric) but somehow Hallie really has begun to assimilate this skill. She's demonstrated this recently at play with her peers and we couldn't be more pleased about this.
And speaking of playing with peers, this past weekend when we were down at the cousins', Hallie began to initiate play with them, and not just follow along or do parallel play. She did this again last night when Karina popped over for a bit. She was very comfortable saying "Come on, Karina," and showing Karina the toys in which she was interested and how she wanted to play with them. We're very much hoping that Hallie is able to do the same thing with her friends at school tomorrow.
And, speaking of tomorrow (which is, indeed today), I've got to go turn in so that we can get up early, feed Hallie breakfast, and get her off to school by nine.
But one last note on the feeding front: Hallie, who is very susceptible to peer pressure, decided to finish off Hannah's peanut butter sandwich on Saturday and had no bad reactions to it whatsoever. She's eaten bites of peanut butter sandwich a few times since then at home (she can make it through about a quarter to a third of one sandwich). This is exciting because it gives us a new protein source and one that is naturally packed with calories and fat and easy to bring to school (her school permits peanuts since there are no kids who are deathly allergic to them, at least at this point in time) and pretty darned age appropriate. And Hallie has been enjoying toast with butter (fake butter) and cheerios for breakfast a lot, too. She's also become a fan of spaghetti and other long noodles (like lo mein) and the other night had some spaghetti with tomato sauce that also contained a nice quantity of spinach and some Italian sausage. She even entertained the concept of eating a piece of broccoli that accompanied a veggie lo mein I bought for her at Whole Foods (she identified it, told me it looked like a tree, touched it to her lips, licked and nibbled it and announced "Mmm....broccoli good" before discarding it). She doesn't eat much, but she is eating enough. More importantly, we've taken much of the stress and pressure out of eating and hopefully this will make mealtimes more enjoyable for her. And, along with this, she continues to not have major vomiting episodes. We are up to 170 days without spew this year and are loving every day of it!
Wednesday, September 2, 2009
Preschool Musical
On the final Wednesday of summer camp, which was two weeks ago now (gasp!), the YCCA held a camp show and picnic for the campers' families. Since we don't really know very many of the other parents (really, just the ones whom I've met dropping off and picking up Hallie from school), we were planning on attending in the hopes of getting to know the YCCA family a bit better. I was hoping that Sharon could make it; she has a crazy deadline (really a series of crazy deadlines) at work and has been traveling back and forth between Philly and Maryland and DC for the past month or so. That Wednesday happened to be a DC day and so her presence at the picnic hinged upon her meeting and train schedule.
Anyway, we knew that Hallie had learned some cool new songs at camp and we had even managed to locate and download a couple of them. Thank goodness for Google and for the fact that Hallie's speech is now good enough that she was able to tell us what the lyrics were to the songs since their real titles are somewhat different than the ones by which she knows them by. So we knew that two of her favorite songs, "Happy Lemons" and "Surfing Song," are by a band called Ralph's World (that just happens to be playing at the Peanut Butter and Jam Series at World Cafe Live in Philly in November; we're there!).
What we did not know is that Hallie was learning these songs and accompanying choreography in preparation for this big performance. When I found this out (on the day of the picnic and show), I made sure to call Sharon post haste so that she was able to sit there in the audience with me and witness our kiddo's debut:
For most of the video, Hallie is off to the side in the back doing her moves, standing close to where the CD player is located (and next to one of her friends). However, part way through she notices us and comes over to say hi and then heads back to her position.
We think Hallie did a great job and we're happy we got this on tape. Hallie's been watching the performance and pointing out her friends to us. I know that she's excited that preschool is starting up again this Friday (it actually starts Thursday but she doesn't go on Thursdays) because I am sure that she misses some of her friends.
It will be interesting to see how she does at preschool now that she's talking A LOT more, but that is the subject of another post...
Anyway, we knew that Hallie had learned some cool new songs at camp and we had even managed to locate and download a couple of them. Thank goodness for Google and for the fact that Hallie's speech is now good enough that she was able to tell us what the lyrics were to the songs since their real titles are somewhat different than the ones by which she knows them by. So we knew that two of her favorite songs, "Happy Lemons" and "Surfing Song," are by a band called Ralph's World (that just happens to be playing at the Peanut Butter and Jam Series at World Cafe Live in Philly in November; we're there!).
What we did not know is that Hallie was learning these songs and accompanying choreography in preparation for this big performance. When I found this out (on the day of the picnic and show), I made sure to call Sharon post haste so that she was able to sit there in the audience with me and witness our kiddo's debut:
For most of the video, Hallie is off to the side in the back doing her moves, standing close to where the CD player is located (and next to one of her friends). However, part way through she notices us and comes over to say hi and then heads back to her position.
We think Hallie did a great job and we're happy we got this on tape. Hallie's been watching the performance and pointing out her friends to us. I know that she's excited that preschool is starting up again this Friday (it actually starts Thursday but she doesn't go on Thursdays) because I am sure that she misses some of her friends.
It will be interesting to see how she does at preschool now that she's talking A LOT more, but that is the subject of another post...
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