How Old is Hallie?

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Saturday, October 31, 2009

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...


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:

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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.

Wednesday, October 21, 2009

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.

Thursday, October 15, 2009

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.

Sunday, October 11, 2009

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

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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...

Wednesday, October 7, 2009

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!)