A Year in the Life of Hallie

As 2010 drew to a close, we've been reflecting on how much Hallie's life has changed over the past year.

This was really brought home to us by the differences we saw in Hallie's response to her school holiday party this year, relative to last.  As I think I mentioned a few posts ago, last year we had to drag her kicking, screaming, and crying back to school on the evening of the party.  Everything was a bit amiss that evening:  Sharon picked her up from school instead of me; instead of getting out of the car at our house, I got into the car with Baby Lea (who was very much a baby at that stage) and a huge dish of macaroni and cheese and we headed back to school.  We tried to explain to Hallie that there was a party at school and that we'd all be having dinner there (never much of a draw for Hallie) and that she'd see her friends and teachers and sing holiday songs.  But Hallie was overwhelmed, in tears, and heard none of it.  Once we got there, things were sort of okay but only just sort of:  as expected, dinner was not much of a draw, and there was a lot of noise and general mayhem.  Kids were racing around and playing with one another but Hallie couldn't make much sense of what was going on.  She sat off to the side when the singing began (as she has done at pretty much every school performance up until just recently) and did not/could not engage with the other kids.  We survived the evening but only just:  our threshold for survival was low and basically entailed making it through without a major meltdown, Hallie vomiting, or Hallie running off through the church hall door when some unsuspecting parent opened it.  It wasn't exactly a low-key, stress-free event and, needless to say, neither Sharon nor I networked or chatted with other parents (which is what parents do at such events).   We kept an eye on Hallie, dealt with Lea who was a bit out of sorts in her own right, and were glad to just to escape unscathed.

Fast forward to this year:  The YCCA had the good sense to break up the dinner/concert into two locations.  The little kids would perform their songs first in the upstairs classroom and then eat.  The older kids would perform an hour later in the big church hall in the middle of the pot-luck feast.  There are only seven families (our own amongst them) who have kids both younger and older, and we were welcome to spend time at both events or either event as we wished.

We opted to head over to the little kid's concert first to hear Lea perform.  Lea, like Hallie, enjoys music immensely and was the only kid in her group (which is the youngest) who participates regularly in sing-along activities.  We knew she'd be psyched to be part of the group.  Hallie also knows the younger kids (the YCCA is small--about 60 or 70 kids altogether--and while kids spend much of their time with their age cohort, they do mix it up with other age groups, especially when they have siblings at school, at various points during the day.  This, plus the fact that Hallie is peer buddy to some of the younger kids in the inclusion program that she helps guide through activities, means that she is quite comfortable with a lot of the younger kids.  So she was excited to partake in the little kids' performance, too.

 

The real surprise for us came when we went over to the main hall of the church for the big kids' party. In stark contrast to last year, Hallie ran in, saw all of her friends, and immediately ran off to join them.  

She was an eager participant in the concert and sat right in the middle of all of the other kids:

 

And, while she wanted no part of eating dinner, she was far from alone in this respect.  After all, it was much more fun to run around the table than to sit down at it:

I know that this video footage was a bit dark and noisy, but it did capture the atmosphere of the holiday party (in other words, mayhem) quite accurately.

So, unlike last year when the four of us were among the first to leave the shindig, this year we pretty much closed down the house.  This suited Lea quite well: she spent much of the final half hour doing an impersonation of Cookie Monster (she went around grabbing cookies from all of the tables, and apparently eating most of them).

 

Towards the end of the evening, I stopped A., the preschool director, to let her know how grateful we were for everything.  I explained that I meant more than just that the school's teachers and staff had organized such a lovely holiday gathering; rather, we were so thankful for the opportunity that she had given our family, and especially Hallie.

A. had allowed us to enroll Hallie outside of the usual waiting list back when we were having so many problems negotiating the agency that runs the preschool (3-5) program for Early Childhood Intervention in Philly.  We were given such a huge runaround and no straight answers and the school in which the agency sought to place Hallie was so clearly inappropriate (and likely unsafe) for her.  I blogged about all of this here and here.  Anyway, even though she didn't really know us and she knew that she was taking on a fairly complicated little three year old who did not talk (Hallie was utterly silent at school for about the first four months), refused to eat, had trouble settling down to nap, was not toilet trained, and was about 30% behind an average kid her age (so closer to being just 2 than just 3), A. was happy to admit Hallie.  It's not like the YCCA needed more kids to make the desired level of tuition receipts either; like most of the decent preschools in the area, the YCCA has a waiting list of children whose parents are eager to enroll them in the program.  A. accepted Hallie because she is interested in providing opportunities for children who have special needs (A. has a Master's degree in Creative Arts Therapy and teaching degrees in Music and  Special Education).  Hallie certainly fit the bill.

Anyway, we were (and are) exceedingly grateful that A. decided to open the doors to the program to Hallie and I just wanted to let her know this.

What A. said in response to me really touched me deeply.  She said, "If I were ever to have the opportunity to make a documentary about the school, I'd want to feature Hallie in it.  I've never encountered a child who underwent such a big change in such a short period of time."

She went on to say that the entire system was ranged against Hallie and that the folks who were responsible for evaluating and placing her were quite happy to write her off as a child who would be forever excluded from regular general education.  Everything they were pushing for suggested that they thought she'd be in a self-contained Special Education system for the balance of her school career.   We were fighting this (and still are) but the reality was that we needed somewhere to place Hallie that did provide an inclusive environment and one where children with special needs were not just accepted or tolerated but actively included.  We needed a school where the staff was trained to work with special needs children, where they taught other children to be buddies with kids who have special needs, and where the curriculum was eclectic enough to be individualized for kids (and not just kids with special needs, either; I think that everyone, special needs or otherwise, learns differently.  A good teacher will be aware of the different ways children learn and a good curriculum will be flexible enough to be adapted to visual learners, auditory learners, etc).  

That's where the YCCA came into things; Hallie has thrived there.  She has gone from a silent, marginal child who watched from the sidelines even when she knew enough to participate to an active, engaged, child who initiates conversations and play with her peers and who is demonstrating real academic strengths that place her at the top of her class (her reading, spelling, counting, and analogizing skills are very obvious to everyone around her, especially her teachers).  

A. believes that Hallie will be fine in a general education setting and that we no longer have nothing to worry about.

Of course we hope she is correct.   Some days it seems to us that this is the direction in which Hallie is headed:  she is eager to read and follows along with words (moving her fingers across the words and sounding things out) almost all of the time.  She wants to know how to spell words she likes to use and, apparently, once she can identify a word, she never forgets what it looks like.  She can pick out which shows she'd like to watch this way and even distinguish between various episodes of these.  (Sadly, this means that she was able to catch me in my fib that our television does not receive Max and Ruby, which is a show that we have refused to let her watch too often because of her capacity to mimic Max's behavior and verbal patterns.  The last time I tried this line, she helpfully pointed out that our Comcast On Demand list did, indeed, contain Max and Ruby).  Hallie loves to learn stuff and I think this will take her quite far.

Still, we have concerns:  her verbal/conversational skills lag far behind those of her peers.  I am not a speech therapist (or any kind of therapist), but I'd guess that she's still dealing with about a 30% delay in this area (making her closer to an early 3 year old than a later 4 year old).  Her interpersonal skills often seem less well developed than Lea's:  Lea is quicker to empathize and comfort; more interested in taking care of others and meeting their needs, be it by ministering to her babies or bringing Hallie her slippers and toys; and Lea watches for your responses and tailors her own relative to these.  Hallie does none of these things and still has pretty horrible eye contact most of the time.  Lea also surpasses Hallie in terms of capacity for imaginative play.  Lea stages elaborate scenarios with her babies (she dresses them, takes them to the playground, plays hide-and-seek with them, feeds them, gets them ready for bed, brings them toys and engages in play with them etc).  Hallie sets up scenes:  she often poses her plastic figures (she pairs off Cinderella, Sleeping Beauty, Tianna and other princesses with stand-ins for their respective Princes, for example) or she might line up all of her figures in front of the television (real or imagined) or stage for a puppet show, but she doesn't actually stage the show or have them do anything beyond this.   Finally, lately, Hallie has been having a really hard time with being flexible.  Things have to be played with a particular way.  If they are not, Hallie tries to step in to right the wrong.  Lea, her most frequent playmate, has her own ideas but Hallie seems not to realize this.  Rather, she gets frustrated when Lea tries to do things in her own way and makes this very broadly known to us.  While some of this is just run of the mill preschooler bossiness, my sense is that this is exacerbated by a deficit in Theory of Mind. 

All of this points to a continued problem that Hallie is having in terms of social skills.  But this will also get in the way of higher order learning down the road.

None of this is to say that the transformation that Hallie has undergone over the past year is anything but huge.  A vast chasm separates where she was when she began school and where she is now.  She has grown cognitively by leaps and bounds and she has given us no indication that she about to stop doing this.  Still, we cannot help but worry what awaits us down the road, and more importantly, plan for how to take on Hallie's residual issues proactively so that we at least smooth them out even if we cannot make them go away entirely.

Pragmatics

Well, it took several phone calls and a six week wait, but we finally got a copy of the speech evaluation that Hallie had done at CHOP back in mid January.

We think the therapist who did the speech evaluation was quite wonderful (coincidentally she was the same person who did the eval for Hallie back when Hallie was 18 months old and said nothing, so overall she was very impressed with how far Hallie had come). We wish she had room on her schedule for Hallie to see her since we've heard very good things about her capacity to treat kids who are similar to Hallie. But the folks responsible for setting up the evaluation and getting us feedback from it could not have possibly been more disorganized than they were. First, it took about three and a half months to actually get an appointment for an evaluation at CHOP. I called the last day in September, CHOP called me back the first week of November, and set up the appointment for their very first opening, which was late January. The wait itself was maddening, but what was even more maddening was that the scheduler kept changing the appointment on us. She'd regularly call us to cancel the original appointment and say stuff like 'But we just had a cancellation for this morning? can you come over right now?' Of course it proved impossible to drop everything and run to Voorhees, NJ (we couldn't even get in to CHOP's main hospital in Philly for an evaluation---the wait there was interminable). Finally, after much back-and-forth (I think they changed the appointment on us four times) and about nine different phone conversations about insurance coverage, we did manage to find a new slot that actually worked and Sharon brought Hallie in to meet D. Sharon was given a verbal report of part of the evaluation and reported back to me that Hallie was ahead in terms of her expressive language but behind in other respects.

Of course, how behind is the big question, and this is something we could not answer until we got the formal evaluation. And when I opened the thick envelope with the write up last Saturday, I was a bit shocked.

Here's what the final verdict was:

First test: Clinical Evaluation of Language Fundamentals--Preschool (2nd ed) (CELF-P:2)

Average range subtest Scaled Score: 7-13 (mean 10)
Average range Composite Scaled Score: 85-115 (mean=100)
Mean Percentile Rank=50

Hallie's scores:

Subtest: Sentence structure: scaled score 6; percentile rank: 9. Age equivalent: under 3
Subtest: Word Structure: scaled score 6; percentile rank: 9. Age equivalent: under 3
Subtest: Expressive Vocabulary: scaled score 11; percentile rank 63. Age equivalent: 4.2

Core language score: scaled score: 86; percentile rank: 18

Second Test: Comprehensive Assessment of Spoken Language (CASL):

Subtest: Pragmatic judgment: standard score 80 (mean score of 100, average rank is 85-115). percentile rank: 9%. Age equivalent: 2.7

The summary assessment written up by the therapist concluded that "Hallie presented as an adorable girl with a complex medical history for prematurity and a recent diagnosis of High Functioning Autism/Asperger's Syndrome. Hallie's performance on standardized teesting revealed just below-average to average receptive and expressive language skills on standardized testing with difficulties in pragmatic language constructs. Strengths in expressive vocabulary skills were noted. Hallie displayed age-appropriate articulation abilities, representing significant progress. Hallie displayed reduced grammatical/morphological complexity. Comprehension decreased as the length and complexity of the oral message increased. Hallie demonstrated a below-average ability to make pragmatic judgments when provided with social scenarios. Hallie exhibited the pragmatic language functions of labeling, requesting, answering/responding. Hallie also displayed a strong awareness of polite terms during today's assessment. Hallie had difficulty greeting, commenting, and asking for informatio. Hallie demonstrates reduced awareness/use of non-verbal language constructs in social contexts. With respect to voice, vocal hoarseness, breathiness, and a soft vocal intensity were observed."

There's a lot more accompanying verbiage, but what it amounts to is this: Hallie knows a heck of a lot of words, and she more or less uses them appropriately. Her spoken vocabulary is above average, and is equivalent to that of a 4 year and 2 month old. But her comprehension (receptive language), sentence structure, and pragmatics (capacity to use language to communicate) are well below average and land her in the 9th percentile consistently, which means that 91% of kids her age communicate better and can follow along more easily with what is being said much easier than she can. The two go hand in hand from what I can tell: if you have no idea what is going on around you (you are not comprehending the conversations you hear, the instructions you are given, etc), you cannot really communicate with others very well, either because a good half of communication involves listening to others, interpreting what they are saying, and responding to them. So while Hallie absorbs a lot of words (nouns and verbs, in particular, and concrete ones more easily than abstract ones), and is generally using 3 to 6 word sentences with great frequency, she can't really/doesn't really interact with her environment. And given that interaction is less important for Hallie than it is for other kids who are much more engaged with the people in their environment, this seems to me to be a problem that compounds itself--rather than resolves itself--over time.

We are working on helping Hallie build the developmental scaffolding that she needs to interact with others in Floortime but progress is sometimes maddeningly slow. Hallie is still pretty reluctant to do imaginative, pretend play and especially has trouble 'acting out' other characters. She will often set up her doll house family or her Wonder Pets figures in various configurations but is resistant to the idea of having them play out a scenario, for example. And she needs to be able to do these things so that she can understand perspectives outside of her own.

So how are we going to handle all of this, other than panicking (which is of course a strength of mine!)? We just started Hallie in private speech therapy and so hopefully this will help a bit. We are also going to try to get her into a social skills/peer buddy class (preferably the inclusion one run at her preschool in the afternoons). This is one of those expenses that will be completely out of pocket and a bit hard to swing. The ideal would be a three-times-a-week group but we'll settle for once a week if that's all we can swing. We'd love to get a social skills group included in Hallie's upcoming IEP, but we don't have a huge amount of faith that Elwyn is going to give us what we think Hallie needs (even if there are a lot of evaluations that tell them that a social skills groups is appropriate for Hallie). At least, they won't give it to us without a fight is my bet.

The other thing that we are going to begin doing this week is an Integrated Listening program. We are pretty sure that Hallie has Central Auditory Processing Disorder and that this keeps her from making sense of what she hears. Hallie's hearing is fine, but she has trouble filtering out significant sounds from insignificant sounds. At least in part this is because her ears don't coordinate well enough with one another. Integrated listening is supposed to help with sensory integration generally. And we are lucky en0ugh to have a cousin-in-law who is an OT who has lent us her integrated listening materials so that we can give this program a try at home. Hallie loves wearing headphones and is particularly excited about the spiffy new Sennheisers that we've gotten her for this purpose. I'm pretty sure she's the first kid under 4 on the block with her own audiophile headphones.

So we're working on things. But I'd be lying if I said that all of this is not frustrating. Hallie is making a lot of progress. She is beginning to work on her emotions, which is fabulous because she is often more engaged with others than she used to be (even if that also means she's frustrated a lot more and occasionally given to manifesting her aggression by knocking down her little sister or exploring the implications of ramming her play shopping cart into the other kids at school). But we also know how much of a struggle things are for her and how quickly things tend to fall apart , particularly on days when she does not get quite enough sleep, enough food, is having a reaction to something she's eaten, etc.

But we'll keep on keeping on because that's what we do best around here, and we'll try to remember that, even though Hallie is far behind in some respects, she's advanced in others and that, hopefully, the work that we are doing will help her close this gap.

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...