Hallie's October Milestones

This is going to be a bit perfunctory because time is running out on the month of October and if I don't write this post soon, I'm going to turn into a pumpkin. How seasonal of me!

Hallie really has made some great strides this past month, and I'm going to bullet point them below. These are all themes that I am sure to return to, again and again.

1. Potty Time. Hallie is nowhere near being potty trained. However, she is making great strides in going to the potty, particularly at school. This began under her former PCA, Latasha, who used to take Hallie every hour to sit on the potty. Hallie didn't do much while sitting there, but she got used to the potty back in August. Since returning to school, she's been continuing to go to the potty, but instead of being asked to go, she's been volunteering to go by raising her hand every time her teachers asked "who has to go to the potty?" after nap time was over. Then, some time in late September, Hallie began to actually go potty while sitting on the potty after nap time. And, most recently (as of this week, really), Hallie has been asking to go to the potty at various points during the day and most of the time, actually using the potty. Admittedly, this has sometimes been part of her effort to get out of naptime (Hallie is beginning to slowly phase out the nap, much to our chagrin), but most of the time, Hallie's need is genuine. At home, Hallie has been less consistent about potty use. For about a week, I had her going every morning when she woke up. She would sit on the potty, read her 'book' (catalogs of kids' stuff that overflow our magazine rack), point out the various costumes that she likes or the toys that the vendors are hawking to our kids, and then go potty. We had a nice routine down, but after my mom had her stroke and I left town for New York for four or five days and started disappearing on the weekends, the consistency and routine seem to have been broken. So Hallie has been more reluctant of late to go potty at home, but I have no doubt that she'll start things up again as soon as we decide to attempt potty training in earnest. According to our Floortime/DIR god, Stanley Greenspan, completing potty training is actually a whole lot easier once "why?" questions kick in, and so we'll give Hallie a few months. If no "why?" questions emerge, we'll try to potty train her in some other way. But we do have some confidence now that Hallie will eventually be out of pull ups.

2. Communication. As you can tell from the asking to go to the bathroom bit that Hallie is mastering, she is beginning to communicate a lot more effectively. Most of this communication is still in the realm of showing us stuff and demanding things of us, but even these skills are more sophisticated than they used to be. Hallie is pointing at stuff consistently, which is a big deal for kids on the spectrum. And she is describing them much more fully. For example, she might say "that's a scary orange pumpkin" rather than her just "orange pumpkin." And she's making much more specific demands of us, too. Most of the time she speaks in four to six word sentences. And she speaks a whole lot more than she used to, too. Not just at home, either, but also at school. Every single one of Hallie's teachers and therapists have noticed this and remark about this in their communication notes and verbally to me when I pick up Hallie from school.

But what's really exciting to me is that Hallie and I are beginning to have real conversations that don't just involve greetings, demands, and descriptions. For example, a few weeks ago, after I picked Hallie up from school, we took one of our usual stroller walks. There's this one section of Front Street where dogs often go with their owners to play, and, as we were passing by, we spied a dog and her person playing catch with a tennis ball. Hallie was quite enthralled with this and I decided to stop so that she could watch them engaged in their game. As we were watching, Hallie and I talked about the dog, what the dog was doing, and how the game looked like a lot of fun. The dog's owner noticed us so she came over with her dog, who gently licked Hallie. Hallie told me that the lick really tickled her and started to giggle. This was a simple exchange, but a meaningful one. We had a nice string of joint attention, a lot of back and forth banter, and the whole thing seemed so spontaneous and wonderful to me. Clearly, Hallie felt the same way.

On top of this, Hallie is asking more complex and nuanced questions. She has been asking some fairly simple "W" questions for a long time now, such as, "where'd 'x' go?" or "where's mama?" but hasn't ventured much beyond this level of questioning. Over the past month, however, Hallie has begun to ask new sorts of questions. She'll show us something and inquire, "what shape is it?" or "what color is it?" or "what animal is it?" and then answer her own questions (she's known shapes, colors, letters, numbers, etc since before she turned two). Now this isn't a bad level of progress but the language/communication skills that Hallie is using in this process is still pretty rote and scripted. We're pretty sure that she was doing this because they are learning shapes, colors, letters and numbers and animals at school and so she's used to hearing these questions. And, let's face it, we used to ask her questions like this all of the time and so she's just giving us back some of our own medicine (she does the same thing when she pops pieces of food in our mouth).

But then something new happened about ten days ago: Hallie began to ask us questions that she could not quite answer and that were far more abstract. This started one day after Floortime when we were waiting for the elevator. Hallie loves elevators and she is fond of pressing the buttons to summon the elevator and to send it to the floor to which we need to go (she is pretty darned good so far at not turning elevators into locals or alerting security). Anyway, when you press the 'down' button, it lights up blue. When the elevator approaches your floor but before its doors actually open, the button goes from blue to its regular unlit state. So, Hallie pushed the down button, it lit up, and then the blue light went off. Hallie turned to me and asked, "What happened to the blue?" and I explained what happened. This is the closest we've gotten to a "why?" questions thus far and was an exciting development. I know it sounds silly and that most parents probably don't take note of when their kids start asking abstract questions but in our lives, the smallest milestones are often among the most meaningful. Hallie has begun generalizing her abstract questioning skills a bit, asking me about the noises she hears but cannot identify when we are out taking walks together. I hope that this blossoms into full-blown constant inquiry into the way the world works and promise to refrain from complaining about how I can't get my kid to stop asking 'why?' if she ever begins to do this. Indeed, right now, I cannot think of anything more wonderful than being barraged by incessant questioning.

3. Pretend Play. This is also something that kicks in late and incompletely for kids on the spectrum and has been a serious concern for us. Hallie's play skills are less functional than those of her peers, and this is often suggestive of a lack of what is called Theory of Mind (basically imagination, which allows one to imagine oneself in various predicaments and allows one to imagine that others have different views of the universe than one's own). In order to have a well developed theory of mind, you need to be able to do symbolic play and pretend play. Over the past month, Hallie has demonstrated that she is beginning to do just this. She has been performing some basic scenarios with her play sets, having her firemen go up the stairs in the firehouse, put on their fire fighting garb, and get into their truck. Or having the baby who is part of her dollhouse doll set get up, go to the potty, get into her high chair, eat, and then go take a nap in bed (demanding a blanket and that the lights be turned out for this last one). This scenario is not all that different from Hallie's own routines, and that's part of what's involved in pretend play, too: it's a way of working out one's emotions about familiar, and not so familiar, routines in one's life. It's great to see Hallie doing this, and doing this on her own (in other words, she initiates the play and scenario and I don't provide it to her).

Hallie is also doing a lot of dress up, both at home and at school, and is becoming quite fond of more elaborate ways of acting while in costume. In addition to playing 'fairy princess', 'policeman' and 'cowboy,' Hallie's 'pretend falling' routine has become more detailed. Now, she no longer just fakes a wipe out and asks herself "are you okay?" and replies "I'm okay!" Instead, she fakes a fall, asks for help getting up, demands that I place a band aid on the 'injured' spot and replies, "yeah, that's better!" I think we're going to be investing in some bulk band-aids around here (and a smaller supply of the Sponge Bob band-aids that Hallie picked out on the Amazon website).

4. Making friends. It seems that Hallie is very popular at preschool. One day, about two weeks ago, I was dropping off Hallie in the morning for her full day at school. We were a bit late, as usual (getting our not-a-morning-kid out of bed and fed and at school by 9:00am is almost always a bit of a stretch for us). We were headed up the stairs when I overheard one of the kids asking her dad if Hallie would be at school that day because she really wanted to play with Hallie. Just then, we got to the top of the stairs. The little kid in question, D-., was elated to see Hallie and called out: "Hallie!" in an excited tone. Hallie responded, with a similar level of enthusiasm, "D-!", and the two little girls hugged. That afternoon, when I picked up Hallie at school, we decided to head across the street to the recreation center playground to enjoy the nice weather. D-., her mom, and her little sister were all there, along with a passel of her little schoolmates.

At first, as is typical of our outings to the playground, Hallie needed to swing a lot. The other kids were off running around and climbing on the play structures and I tried to get Hallie to join them, but she needed to do her own thing. Then, her little friend D-. approached us and began to swing, too. Hallie took this as her cue to ask to get off of the toddler swing and onto the big girl swing. The girls swung for a while when D-. suggested to Hallie that they go off and play "Princess Castle." D-. is verbally advanced and has an appropriate imagination for her age (which is about the same as Hallie's) and is something of an alpha girl. Hallie willingly followed her and D-., another little classmate, G-. and Hallie scaled the monkey bars and raced across the bridge while D-. and G-. concocted a narrative around the defense of their princess castle. After a while, I joined in by playing the Scary Big Giant, which all the girls thought was a riot.

Hallie's princess castle play lasted less time than that of her peers, and she returned to swinging for a bit. But then the girls, and a few of their other classmates, decided to decamp to a playing field behind the playground that had a pitchers' mound that seemed particularly well-suited to building a sand castle that the kids could decorate with leaves from one of the small trees on the edge of the field.

Hallie had a blast helping with this project. And she completely enjoyed a brisk game of chase with her friends.

Hallie was happily exhausted by the time we left the playground about forty-five minutes later. I was equally elated: Hallie seemed so engaged, needed so little help and support from me, and seemed to fit in with the others incredibly well.

We've been to the playground with schoolmates a couple of times since then and Hallie has some good group play days and some days when she prefers to do her own thing (swing a lot, slide a bit, try out hanging on the monkey bars, and climbing). But the group play thing is going a whole lot more smoothly, particularly when one of her peers provides some structure (a narrative, a goal, etc) to the play.

Being an older sister is also great for Hallie's play skills. Lea is getting to an age where she really likes to play and is a very sociable little creature. Hallie adores Lea and frequently initiates play with her (her phrase for this is "more silly with Lea").

She'll often walk up to Lea and get in her face, make great eye contact with her, and begin to babble in a Lea-like way (her name for this is game is "A-Ga!", which is the syllable that Lea often babbles. And she is thrilled that Lea can now participate in the activities that Hallie enjoys, both at home and on the playground.

Of course, Hallie is never terribly thrilled when Lea grabs one of her toys and will often sternly admonish her little sister with phrases like "No, Lea, that's my toy." But this, too, is a good thing. Carving out her place in the world, even at the expense of sharing skills, is important for Hallie to do.

5. Gross motor and executive planning skills. Chief among the developments we've seen this month is Hallie's newfound capacity to steer and pedal a tricycle with ease. Amazingly enough, she has managed this feat at home. Anyone who has ever been to our house knows that it is tiny and that the living room/dining room is frequently toy strewn. So it's a minor miracle that Hallie has managed to perfect her bike riding skills in our house, but somehow she's managed to pull off riding around the passes between our living and dining rooms and frequently finding a way to do so without hitting a wall, toys, or family members.

Hallie is very excited that she has learned to do this . Lea is likewise excited by the tricycle and often will tag along with Hallie by trying to hold onto the back of the trike while Hallie is pedaling.

Needless to say, we don't have a high tolerance for this dangerous practice and remove Lea when she tries to hold on to the tricycle's 'trunk'.

Hallie's ability to walk up and down stairs has likewise improved. She needs more support going down than she does going up but it's clear that she's getting the notion that she needs to alternate her feet when climbing up or down the stairs. Now if we could only break her of her new habit of trying to jump from one stair onto the next....

6. Decreased GI problems. Even though Hallie has had several small colds since starting back up at school in September, we've not been seeing any real increase in vomiting or reflux. And she's even eating a decent (for her) quantity of cow's milk products (mostly regular cheese pizza but also trace amounts in various snack foods like Goldfish crackers and cheese puffs--both of which Hallie really enjoys--and packaged bread and the like). We are now on day 220 without vomit and, even more significantly, Hallie has only vomited twice in the last three or four weeks. It's gotten to the point where I really have lost count of the days and that is a nice thing, I think. On top of this, Hallie has weathered three colds since early September with no uptick in spewing. This is definitely cause for celebration around these here parts!

And speaking of celebrations, stay tuned for an update about our extended Halloween preparations and celebrations...

Pumpkinhenge

Today was the big Halloween parade at Hallie's preschool. It was kind of a madhouse and a lot of the kids (including Hallie) were a bit perplexed about why their parents, who had picked them up at 3:00pm, were dropping them off again at 4:00pm. From what I understand, there was general mayhem in the classroom as the kids were lining up to come outside and that the tears that some kids were shedding were pretty infectious. While the crying kiddos included Hallie, briefly, her tears were about having to give up her bottle three blocks from school -- since I draw the line at allowing her to have it anywhere near 'campus' -- and not about being dropped off again by me.

Anyway, the scene in the schoolyard was equally chaotic; tons of parents and grandparents and siblings and assorted others showed up to witness the annual event and everyone was jockeying for the best view. Being short, it was a bit hard for me to see, let alone take pictures, of the parade. But the kids hung out to trick or treat at the church that leases space to the school and to run around the graveyard. Yes, the graveyard. Very Halloweenish and very cool from a historical perspective.

The pastor and his family had decorated the graveyard (which is going to be the backdrop of a large dance with live rock music tomorrow night) and, along with various blow up ghouls and ghostly characters, they had liberally peppered the expanse with small pumpkins in an effort to create a sort of pumpkin patch effect on the premises.

Hallie was enthralled with the pumpkins but not with the sort of display that the family had created with them. So she set about changing it:

Some of the pumpkins were a tad out of reach but this did not stop our girl from her mission:

Soon, the display looked like this:

And some of the kids thought that Hallie's plan was a really, really excellent one, so they joined in and helped advance her architectural endeavor:

Of course, others were very disturbed by this and set about trying to put the pumpkins back where they came from. Sadly, I was unable to get a shot of the industrious little boy who spearheaded the return-the-pumpkins-to-their-gravestones movement.

But, ultimately, Hallie prevailed. This is the masterpiece that she created:

Hallie, having reasserted order in the disorderly world, then set about running, playing, and chasing after her friends. She had a great time, even if her idea of play and order are a bit different than that of some of the other kids. And the other kids adore her and she adores them, and in the sweet way that preschoolers often have, they don't seem to care if she is a bit eccentric and not so good at communication (yes, I still need to write that post....really, I am working on it and intend to have it done before November begins. At least that's my intention). But I am pretty sure that, had our developmental pediatrician been lurking in the graveyard at today's shindig, she would have had no doubt that placing Hallie on the autism spectrum was spot on.

My sense is that Hallie's pumpkinhenge construction was related to the fact that she was completely overwhelmed by the Halloween event at school this evening. First of all, the atmosphere was one of chaos involving about sixty kids and easily a hundred strange adults. Not only that, but all the kids were dressed up and did not necessarily look like themselves. That was probably a bit disconcerting to Hallie. Second, there was very little structure to the event. Hallie had no idea what was expected of her and, given that I had no idea what to expect either, there was no way that I could devise a social story for her that might explain the event for her beforehand. Next year, this will be a bit easier. And hopefully I can get her teachers to provide her with a social story in advance of other similar events that no doubt will be held for other upcoming holidays. Third, the parade itself was followed by a long session of free play. Hallie does a lot less well at free play than she does at structured play. So, all of this amounted to a disorderly universe for a kid who often feels out of place. What better way of responding than by building pumpkinhenge? This helped her feel more in control of things and, after the structure was built, Hallie could go on and play with her friends and enjoy things more fully. In other words, Hallie needed to build pumpkinhenge in much the same way as she needs to jump on trampolines/chairs, needs to roll around in her stuffed animal collection, and needs other forms of sensory input. Her body works less well than those of other kids and she finds these activities to be self-organizing and self-regulating. Lining up pumpkins involves a lot of heavy work, joint compression, and proprioceptive activity. So, if this is what my kid needs right now, so be it. There's nothing wrong with lining up a few gazillion pumpkins. Plus, it's probably a whole lot of fun. Heck, next time I'll probably help line them up with her and turn it into a very nice Floortime activity.

Back to Back National League Champions!!!

Today was Phillies Day at Hallie's school, and of course our girl wore her Number 8 Shane Victorino t-shirt, which had to be laundered last night since she also wore it on Monday (more on this in a bit). All of us were in our Phillies Red and wearing our caps, because we were root-root-rooting for the home team. Hallie made a very cute flag at school, of which she was exceedingly proud, that proclaimed: "Phillies #1". And, indeed, our home team is number one and headed to the World Series next week, which is a feat rarely repeated by teams (last National League team to do so was the Atlanta Braves in 1995/6; last NL team to win the World Series twice in a row was the Cincinnati Reds in 1975/6; methinks that we're about to give the Big Red Machine a run for its money). What I love about this team is that it is a team. Ryan Howard, the NLCS MVP, is a truly impressive player and he had some pivotal moments this series. But the whole team contributed to this effort, all season. There are no prima donnas on the roster; just solid players who have one another's backs and who do the best job they can to advance their team. It's refreshing to watch a team work like this one and to not have the sort of drama such as that brought on by Manny Ramirez or A. Rod.

Anyway, we're really pumped here in Philly. And not least of all because Sharon and I actually got to attend Monday night's Playoff game (game number 4) against LA, thanks to Jake's mommy, Gina. It was the nicest -- and most unexpected and unprecedented -- gift anyone has ever given us. Not only did Gina get us stellar seats which afforded us an amazing view of the entire game (which was a bit of a nail biter, and far less of a rout than the games preceding and following it and which ultimately proved pivotal since a 3-1 lead on the Dodgers essentially demoralized LA and sealed its fate as the runners-up in the National League). But she also drove all the way down here to watch the girls and get in some quality time with them.

Both of the kids were thrilled to see Gina; Hallie ran over and hugged and kissed her the moment Gina walked in the door and remained a social butterfly and chatterbox with her until bedtime. Lea took a three hour nap on Gina and woke up in just enough time to catch the amazing last inning. This gave Gina enough time to teach Lea how to 'high five' so that she could perform the move with aplomb when Jimmy Rollins got a clutch two-run triple with two outs in the bottom of the ninth when the Phillies were behind one run. We won that game 5-4.

Tonight, our lead was more commanding (thanks to several amazing multiple run homers by our boys) and Lea had ample time to practice her 'high five' skills. We're hoping that she gets to perfect those skills next week...meanwhile, time to get the team colors washed again. The weather for next week is all baseball!

As Hallie likes to say, "Go Phillies!" Now off to enjoy the rest of the sounds of the fireworks coming from Citizens Bank Park (designed by Sharon's architecture firm) which are completely audible in our living room which is a mere couple of miles from the stadium.

Lea's New Skills

This week, Lea learned how to clap her hands. While we did a bit of coaching to teach her this new skill, it was far easier for her to learn how to do this than it was for Hallie. One of the moms on a listserv to which I belong noted that full-term younger siblings of micropreemies practically raise themselves. We definitely concur.

So, we can add to Lea's skill set hand clapping to playing peek-a-boo; crawling like a demon; cruising on furniture; eating pretzels and graham crackers with aplomb; and chasing after and securing any item her little heart desires. She's also a championship-level pincher and biter (mostly of Sharon), but I'm no sure we want to celebrate these aspects of her character.

Anyway, I caught a video of Lea clapping in her swing (with shameless prompting by yours truly). Hallie wanted to get in on the act, so I took some footage of her using the chair in our living room as a trampoline. She is very resourceful about finding ways to meet her vestibular and proprioceptive needs and we are happy to indulge her (especially considering that we never intend to move with the living room furniture. Why not let her trash it? It's not like we have room for a trampoline and so Hallie is happy to call this her trampoline and let us know how much she loves jumping on it).




On other Hallie fronts: somehow I missed this milestone, but Hallie has now had 203 vomit-free days this year. She's been great, really. She's eating (grazing, mostly) quite well these days. She had had a cold ten days or so back, and her intake plummeted, as it does for most kids, but she's making up for things now. She loves toasted bread with butter, requested a sandwich (which, for her is toast smeared with spreadable goat cheese) last night at dinner time and actually ate about half of the half-slice of bread and cheese that I presented to her; and she's eating chicken hot dogs again. We've taken the pressure off of her, and us, and that has been a good thing. Snacking in front of the tv or while playing is not precisely our idea of a family meal, but at least, this way, Hallie does come running over to the table and gladly takes a seat with us when our friends come over to dinner (apparently, the two of us eating alone, or the two of us plus Lea in her high chair don't make the grade for Hallie). And not only does she come running over to sit with us, but she will request some food items (chocolate cake or cookies are her favorite). So, right now, this is enough for us. We need to take it slow and did I mention that a decrease in pressure is a good thing?

Still working on that long post of how far Hallie is coming along...

Halloween Preview Pics

Hallie is still not entirely sure what she'd like to be for Halloween, but here are the options:

Cowboy Hallie

Cowboy Hallie in boots and PJs:

Policeman Hallie. Please note that the costume, which is a 3-4 toddler, is HUGE on Hallie. It will take some Stitch Witchery magic to shorten the arms and legs of the suit and the insertion some foam insulation tape like the kind you put around your doors to keep the draft out to keep the hat from slipping down over Hallie's little eyes. I am not terribly crafty, so I am hoping that I am up to this task.

Dalmatian Hallie:

We procured the first costume on Ebay after Hallie emphatically responded, "Cowboy!" every time I inquired what costume she'd like to wear for Halloween this year. This went on for a month, so a cowboy seemed like a safe bet, especially since Hallie LOVES pretending to ride horses at home and enjoys riding real ones every weekend.

Then, we heard from the folks at school that Hallie kept telling them that she was going to be a policeman for Halloween. They do a lot of dress up and dramatic play at Hallie's school and apparently she most enjoys being a policeman and a fireman.

Last week, though, she responded "dump truck" when I asked her what she wants to be for Halloween. We do not have a dump truck costume and I'm not about to figure out how to construct one (ha ha!) right now. But we do have a lovely dalmatian costume, courtesy of Aunt Laura.

And Aunt Laura has also provided Lea with her costume this year. Both Aunt Laura and Baby Lea love giraffes, so it's a very fitting outfit. Here's a cute picture of our two little animals:

Right now, the plan is that Hallie will be a policeman at her school Halloween parade on Friday October 30th and a cowboy on the big day itself, when we'll be trick-or-treating in the neighborhood with Hallie's best friend, Eliza Grace, who is the proud owner of several very lovely Native American outfits. Our neighborhood is very trick-or-treat friendly and the residents of one of the little blocks close by close off their street to traffic on Halloween night and put out all sorts of crafts and games for the kids to do and snacks for adults and children, alike. This is particularly nice for kids who don't really care about procuring as much candy as possible because they don't really eat it anyway. We're hoping that the weather is nice and that the kids have a ton of fun.

Anyway, enjoy the costume preview, and tune back in for real shots of the girls in their finest Halloween gear.

Go Phillies!

Game 1 of the Division Series was amazing (I got to watch most of it while Lea napped and Hallie was in preschool); Game 2 was less so (for a while there I thought we were going to pull it off, but Cole Hamel's pitching was uninspiring and our offensive play was lackluster). I was all geared up for Game 3 tonight while holed up here in my mom's apartment in New York. It was not to be, though: the game in Denver was snowed out. This is hard to believe given that we're only a third of the way through the month of October but one can only hope that the Phiting Phils benefit from this extra bit of rest.

Mom is doing much better, but is still in a pretty bad place. The oxygen is gone; she is still on an orogastric feeding tube; is trying to but is unable to speak; and has minimal movement on the right side. But her eyes were open for most of my visit with her today and she seemed to understand most of what I was writing to her---she has severe hearing loss so I write her notes instead. Time will tell what happens. She will have a swallow study on Monday that will determine whether it is safe for her to eat and what consistency food she can eat. And Physical Therapy will be by to do an assessment. I am hoping that, even though I will have to phone in to get the details concerning the results of all these tests, the doctors/nurses will realize that I actually do understand the medical stuff that they're doing, etcetera, and that they don't try to dumb things down for me.

I'm still uncertain what the larger game plan entails but I strongly suspect that the attending physicians were resistant to the very idea of developing a game plan given how grim the situation seemed this time last week. But now it does seem like my mom is in it for the long haul...

Anyway, back to the Phillies. The girls were all decked out in their baseball finest this week and I got a few (relatively) cute shots of them:

In this next shot, Hallie is giving me the goofy grin that she likes to make whenever I tell her to say "cheese" (and she decides to comply, which is somewhere between a quarter and half the time).

Hallie was very thrilled when I bought her the baseball cap she is wearing in these pictures on Monday after preschool. It is harder than it should be to find toddler/preschooler sized caps on South Street (the entertainment district close to where we live) but, after checking at a few stores, we were directed to one that had a nice array of Phillies head gear. Surprisingly, the store actually had her size (very, very small youth) in stock and the hat fits her perfectly. And she is so very cute when she says, upon prompting, "Go Phillies!" She needs no prompt when she declares that she is "Baseball Hallie!"and grabs a chopstick, drumstick, or just mimes hitting a 'baseball' (which is variously a nubby Gertie ball, a small hacky sack or a beach ball) that I toss her way. Whenever she "hits" the ball, I make a huge deal out of it and she comes running over to me to give me a hug. She may be the only child who grows up thinking that regulation baseball is played this way.

Speaking of baseball and the Phils, I was thrilled when Sharon told me last week that we won the United Way raffle for two tickets to the luxury box her architecture firm owns at Citizens' Bank Park (which her firm designed) during the 2010 season. That is going to be a very fun date! But post-season 2009 remains to be completed and hopefully our Phils have a Phiting chance.

Our Little Imp

Lea is turning into such a little imp. This is the look she gave me when she woke up Friday morning (well, barely morning: she likes to get up around 11am most of the time. She takes a page out of Sharon's book in this respect!). She was obviously in a very good (and exceedingly cute) mood. I couldn't help but take a few shots of her:

What you can't see in these pictures are Lea's bottom two front teeth, which have no broken through and are becoming visible to the naked eye and very palpable to those of us upon whom she likes to gnaw (I dare say that Sharon has things worse off than I do in this respect).

Lea has been developing in other important ways, too. This past week, Lea said her very first word, a very appropriate "uh-oh." She doesn't know what it means yet, but she finds it hilarious to repeat and now say on her own. And she's also begun to initiate games of peek-a-boo with us. She is an incredibly engaged little girl who is growing increasingly more interactive as the days elapse.

Lea has also been pulling to stand on everything and wants very much to stand on her own and walk from one holding-on-place to another. We brought up some of Hallie's old toys to give her new and more interesting things to play with and new pulling-to-stand locations. As expected, she loves her Fisher Price piano and Leap Frog table.

Of course, Lea's favorite activity involves watching, and then doing, whatever it is that her big sister is up to. Hallie's favorite spaces at home is the corner of the living room next to the couch and behind the couch; Hallie likes to stash her favorite toys back there (it's also where the play hut and the tunnel live, making the space even more sacred) and it contains a nice big subwoofer upon which Hallie likes to climb and dance to her tunes). So Lea has decided that she needs to crawl into this nook every chance she gets and then peers out at us and flashes us a great big grin that says, "Look, I did it!"

Lea also goes after Hallie's toys and, for the most part, Hallie is a good sport about it (as she is about most things involving Lea, whom she adores). We're trying to teach Hallie to trade toys with Lea when Lea when Lea grabs hold of an especially prized possession. This sometimes is a bit of a struggle, and Hallie will exclaim "mine, Lea, my toy!" but does pretty well and is also quite fond of saying, "Here Lea, here you go!" Of course, there have been a few altercations over the Casio keyboard when Hallie is playing her piano and Lea makes a bee-line over to it and starts banging away. I suspect that it's pretty hard for a three year old and an eight month old to grasp the concept of duets, but we're working on it.

Lea is also getting pretty huge. She's tried a few new foods this week: sauteed ground chicken crumbled quite finely, which she seems to like; diced soft cooked carrots, to which she seems indifferent; vanilla Stonyfield farm full fat yogurt, which we think she likes, at least sort of; and mac and cheese, which she definitely grooves on. She is very, very fond of graham crackers, cheddar bunnies, pretzels, and toast rectangles slathered in buttery dairy free spread (left over from Hallie's breakfast). And she continues to love her bottle, but only if she gets to grab it, tip it up, and hold it herself. Our little imp definitely has an independent streak.

That's about all I have the energy for right now, but check back for a long update on Hallie's very excellent week...

Neurodiversity, or Wishing the Spectrum were a Rainbow

I've been putting off this post for over a week now, and unfortunately I've had really good excuses to do so. So, to just jump right in and tell it like it is: on Monday, Hallie was officially diagnosed as having "High Functioning Autism/Likely Asperger's Syndrome or perhaps it's really PDD/NOS but isn't it really all just the same?" (not kidding; this is how it was put to us officially). And, so as to have other things to worry about that might distract me from doing hideous amounts of research and arranging yet more therapy services for Hallie (I ask: is it the autistic kid who is the puzzle or is it her schedule that requires puzzling out?), my mom had a major stroke, complicated by life-threatening pneumonia and atrial fibrillation that may or may not be associated with the stroke some time between Tuesday night and Wednesday morning. This had me rearranging my schedule so I could go to her bedside in New York and sit vigil (while watching monitors and experiencing some not so pleasant flashbacks wherein I attempted to raise oxygen saturation levels merely by concentrating hard enough on the beeping noises and blinking lights and praying hard that she did not get to a point where she would require mechanical ventilation since this is not, for her, an option. I got to ponder the similarities and distinctions between having a baby who was essentially born on a ventilator whose neurological status and brain function remains unclear when they somehow, perhaps miraculously, survive the assaults sustained by her body, sensory system, and brain and having a parent who could not breathe and whose neurological status and brain function remains unclear (since the doctors themselves have not even been able to broach the question of the extent to which the stroke has impacted my mom). Will either of them be able to communicate typically, eat typically, move typically? Who knows? Certainly, there are important differences between retraining an infant or toddler brain (which has been determined to have substantial plasticity) and that of an elderly woman. But both scenarios involve considerable onion peeling and lots of work on everyone's part.

Fortunately, right now it seems like the pneumonia is subsiding a bit and we're hoping for the best for my mom. She's still on oxygen support but is breathing better. I'll keep the blogosphere posted as I know more. And a big shout out to Anne and Eliza Grace for helping me keep things together this past weekend.

In terms of Hallie, well the situation is more complicated. Of course.

First, let me say that the diagnosis was a sort of a judgment call made by the developmental ped. She could have put off lowering the official gavel to another appointment (which I already have to make---seeing her in December or January involves making an appointment kind of about now). But, given some of the things she saw (she observed us through a two way glass wall) and heard (when we orally went through the parental checklist for autism spectrum disorders), and given how well Hallie has responded to therapy, and given that "Hallie is just not all that delayed now," it seemed to make sense to her to reclassify Hallie as disordered.

No longer delayed is good. Disordered: not so much. High functioning: very nice. Autism spectrum: I'm not even going to bother classifying that one.

So what was the basis for the diagnosis, you might ask. Well, here's a telescopic version:
-penchant for repetitive play
-substantial difficulties with pragmatic language (that is, using language in a social setting as a mode of communication. Hallie easily makes 3-5 word sentences and often longer ones. She labels things and requests items from us. But she does not take conventional, unscripted, conversational turns spontaneously)
-penchant for scripted language (set phrases) and echolalia (repeating back part or all of what is said to her, or what she hears others--including TV friends--say)
-problems with eye contact
-a gamut of sensory issues that suggest Sensory Processing Dysfunction
-low tone (related to prematurity, certainly, but the lines between 'post preemie syndrome' and 'autism spectrum disorder' are fluid. I'd put them both on a spectrum of atypical and leave it at that, really).
-penchant for routine that borders on need for routine (having to perform ritualized actions in certain contexts; wanting to repeat the same actions or things over and over; categorizing anything and everything in ways that sometimes make sense to the rest of us and often makes no sense to anyone but herself).
-very hyperactive and rarely sits still. Tends to flit from one thing to the next.
-limited pretend-play skills and a greater tendency to play nonfunctionally with toys.
-food issues and autism often are linked. So are GI issues. Needless to say, Hallie has both.

That covers the big stuff and if I've left anything out, I'll edit this list later.

Why high functioning?

-Hallie is super smart. She learned the alphabet and numbers before she turned two, she is sight reading individual words, she is not hyperlexic--which involves not understanding what she's reading--and shows no cognitive impairment. While learning in school might be hard for her in some respects because of her sensory issues (auditory processing, easily distracted, needs vestibular and proprioceptive input etc etc), she is eager to learn, interested in books, numbers, music etc and will likely do well in a typical school with supports, as far as academic stuff goes.
-Hallie works hard. She is eager to please and she is more social than your average (like there is one!) autistic person. She responds well to routine (see, it's a strength and not just a weakness!).

Why Aspergers?

-Who the heck knows? I thought that aspies didn't have significant language delays. I thought Hallie had a significant language delay. But maybe this is where she has caught up and the delay isn't so significant anymore?

Why this doesn't quite fit:

-Hallie rarely has temper tantrums or meltdowns. She can be redirected from routines fairly easily (unless food is involved; food is another ball of wax altogether for Hallie). Hallis is more likely to shut down when overstimulated, and I guess this could be seen as a spectrum-like-response.

-Hallie is very social. She is extremely interested in other kids, but does not know what to do with them. But, then again, from what our developmentalist said, this is fairly common in aspie and autie girls, and is under-studied because autism spectrum disorders are more prevalent/more diagnosed in boys, who generally tend to be less socially oriented.

-Hallie does turn take and share fairly well for a three year old.

Making and remaking these lists in my head could drive me crazy (or crazier). So I am trying not to do this (too much, at least). The point remains that autism spectrum disorders are very hard to diagnose in young children and that, at the same time, the earlier one diagnoses these and gets the kiddo the help s/he needs, the better. We already know that Hallie responds well to Floortime/DIR and OT. Adding in pragmatic language therapy (I am filling out the crazy questionnaire to get this ball rolling) and tweaking her IEP to make sure that her sensory needs and pragmatic language needs are met at school (this appointment is set up for the end of October and our developmentalist will look at Hallie's current IEP and provide suggestions for improving it) are not too onerous.

Our Floortime guru was a bit surprised that the doctor diagnosed Hallie as HFA/Likely Aspie but he agrees that the diagnosis doesn't really hurt us unless we let 'them' label Hallie. No one at school is going to treat her any differently (they all love her there--and she is thriving in a very wonderful way: more on this in the next post). So, as long as we don't let the label define the kid, and we only use the label to help her get the services she needs, we're okay. It'll be a struggle, for sure. Our society likes to categorize and schools, less-than-empathetic people, and even the well-meaning-but-benighted tend to use labels to discriminate and not embrace, but if we can work on turning the spectrum into a rainbow (and Hallie loves rainbows and 'lots of pretty colors'), we'll be okay.

Tune in tomorrow, or at least pretty soon, for a story of how OK we're going to be.... (and I promise to have some pictures up then, too!)

Pleasant Surprises

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.

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...

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.

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.