Playtime Progress and Kindergarten Angst

There are several major picture posts that chronicle the past five months (!!!) of our kids' lives in preparation (as in:  I finally managed to download pics and videos to my computer and will at some point soon organize them).  But in the meantime, you will just have to put up with my random thoughts about current events/developments and our upcoming educational endeavors/stressors.

Hallie has made truly amazing progress over the past year, and especially over the past three months.  Here are a few of the great things that are happening for her developmentally:

1.  Pretend Play:  A year ago, Hallie's pretend play skills were at best rudimentary.   At most, she acted out scripted routines that were familiar (so she did things like re-enact fairy tales like the "Three Little Pigs" or "Goldilocks and the Three Bears").  While Hallie still enjoys a good fairy tale or classic story (in addition to the aforementioned, "Jack and the Beanstalk," "Peter Pan" and lots of lots of stories related to princesses are a big draw for her), Hallie has developed the skills she needs to develop her own stories, put on plays, etc.

And since dressing up is so much fun, the entire family has decided to get in on it.  Here's a picture from a Purim party that we attended at the home of Eran, who is one of the girls' school buddies and regular playdaters, and another cute one of "Peter Pan" smiling (since Lea was looking away or frowning in all of the group shots we took).

Back to Hallie:  She's not just doing pretend play with her body and a bunch of costumes but also with small figures (people, animals, etc).  In the old days, Hallie used to line up her toys or perhaps arrange them in some activity (so they might all be lining up to get on the school bus, or surrounding the TV watching a show, or something of that nature).

The configurations and arrangements were extremely precise and she was none too pleased if you disturbed them. 

These days, Hallie's play skills have moved so far beyond this stage.  She's now having the little figures talk, walk, interact with one another, and act out realistic scenarios.  From my eavesdropping in on her play, it's clear that she's playing out the scenarios that matter to her and her life in the process.  Her little figures are having trouble sharing their toys, but when one does decide to share with another, a third will chime in with praise.  If they don't share, the characters might have angry words with one another and they sometimes end up in time out (she has threatened her doll house baby, who may be named "Bunny" and the little girl who inhabits the same structure with banishment to the High Chair (the unfortunate location of her own time outs now that she no longer eats in one) for misbehaving or having accidents.   Her little people go to school, play in playgrounds, go swimming and have a nicely well rounded existence.  Just like Hallie's.

Hallie initiates a lot of this play and doesn't just follow along with others when they are playing in this way.  The other night, Hallie got out the pretend food, took orders from us, and she and Lea served up slices of cake ("gumdrops or strawberries?"), pizza (She had a few slices of plain but was happy to accommodate our request for pepperoni, mushroom, or spicy--which is how she thought of the pepper rings).  She was also very happy to make us triple-decker sandwiches if we were not in the mood for pizza.

Interestingly (and not at all surprising, really), our play space (which still remains cluttered despite repeated attempts at culling and organizing toys) is not nearly as much of a disaster zone anymore.  Less stuff comes out and that which is on the ground experiences more intense, robust play.  And both kids seem much more able and willing to help clean up when they are done.

What's nice is that Hallie is testing out all sorts of emotions in this play.  It used to be that there were no badly behaved or angry characters; the big bad wolf would quickly be recuperated into a positive figure by Little Red Riding Hood or the Three Pigs or whoever because any other alternative seemed too dangerous to Hallie to be tenable.   Now Hallie explores the dark side; there are fire-breathing dragons and scary monsters along with all the helpful snakes and friendly dinosaurs.   Characters can have trouble sharing or get into conflicts and Hallie can devise strategies to resolve problems.  All of this suggests that Hallie is filling in of some of the pieces that had been developmentally missing (or misplaced).  We credit Floortime/DIR with a lot of this progress.  Hallie and her therapist (and Sharon, who takes Hallie to Floortime) have been working with Hallie on exploring and figuring out how to handle uncomfortable, scary, and difficult emotions.  Hallie's progress has gotten even quicker now that she's been attending structured play dates with peers (her psychologist hosts these three times a month) in addition to her regular weekly Floortime session, we've seen amazing things happen vis-a-vis Hallie's play skills.

Hallie isn't just doing all of this stuff at home; she is also initiating play with her peers much more consistently at school.  Her conversations with peers are still more rudimentary than typical 4.5 year old kids but she has branched significantly beyond the social greeting stage.  And she's no longer just playing intensely physical games (lots of running, chasing, duck-duck-goosing sorts of things) with them; now there's more sophisticated, quieter, and smaller-scale play going on.

We saw all of this come together at a play date at our house the other week.  One of the other little girls whom Hallie plays with a lot at school came over for a few hours on Wednesday (my day at home with both kids).  I did little to no hovering or structuring of play.  Rather, Hallie and B. ran upstairs, did some dress up stuff, came down and made puppets and put on a puppet show, and ate lunch (Hallie actually ate more, and more willingly than her friend did, amazingly enough).  At one point Hallie wanted to continue to horse around and chase B., but B. told Hallie that she wanted to do something else.  Instead of letting B. go off and play on her own or act out in some other way, Hallie turned to B. and said, "That's a GREAT idea!  Let's do "x"!" (whatever it was that B. chose to do).   I have to say that I was completely impressed with Hallie and was thrilled that it went so well.  I think that over time the sort of shock (good kind of shock, obviously) that I feel when things go so well will dissipate, but meanwhile, it's nice to have such pleasant surprises.  They also serve as good reminders to never underestimate Hallie.

2.  Social Skills. These overlap with and go hand-in-hand with Hallie's new found play skills.  Indeed, I am now a firm believer in why play is such important work for kids:  it's where they get to develop and act out the "stuff" that they need to interact with the human world around them.  Hallie is much more conscious of other people and other peoples' feelings and very quick to help if something is wrong, someone gets hurt, etc.  She also exchanges more language that is directed at 'social niceties' (she's long been a polite kid whose speech is peppered with 'pleases' and 'thank yous' but she has elaborated on this a lot and can hold basic social exchanges (things like--"How are you?" "I feel fine!" type of stuff that is the cement of daily life exchanges).  She also does more 'small talk' with peers and is initiating a lot of it.

Hallie still has some major issues with eye contact and responding when asked a question (even if she hears you, it looks like she is ignoring you).  Since people like to be acknowledged and it can be quite off-putting if the person whom they are addressing doesn't look up at them, says nothing in response to a question (let alone a statement) and sometimes just walks away when being spoken to, I am trying to work with Hallie on just looking up and acknowledging the person who is addressing her.  This is very much a work in progress but I am hoping that I manage to train her to do this by the time kindergarten rolls around.

3.  Academic skills.  These are Hallie's strong point.  I'm not an early childhood specialist by any stretch of the imagination, but it seems to me that Hallie's math skills are pretty age appropriate for a 4.5 year old:  she has long been able to count objects but is beginning to get the notion of addition when provided with a visual aid, knows what halves and wholes are and the like.  She's great at pattern recognition (remember, she was a champion sorter-by-color-and-shape before she was age 2).  I don't think she's a math whiz; she's just keeping up with her peers quite nicely.  And that's perfectly fine with me.

Where Hallie really blows us away is in terms of her ability to read.  We knew a year ago that she had a lot of sight words and could spell them as well as recognize them.  About six months ago we sensed that the words she recognized included many atypical ones (multi-syllabic, long words that are not hugely common).  What has become clear over the past two months is that she is reading fluidly at what I imagine is somewhere around the end of the first grade level.  When she encounters long words, she sounds them out phonically.  She makes educated guesses by filling in syllables in longer words quickly but in cases where she misreads the word, will happily stop and sound out the word and get it right the second time  (so, for example, the other day she encountered the word "character."  She initially read it as "creature" (which made sense from the context of the sentence); I stopped her and told her that this was a good guess but not the correct word.  She looked at the word, sounded it out (understanding intuitively the 'ch' blend) and read it correctly the second time.    Reading in this manner, Hallie has gotten through entire books at one sitting and is equally happy reading the unfamiliar as she is the familiar.

It's clear to us that Hallie understands what she's reading, too.  She does a good job of narrative retelling (even with her pragmatic language delay), happily answers questions about the content of her books (several years of speech therapy will really hone those skills!) and asks us for clarification when something isn't familiar.  She also responds emotionally to books (getting scared when something bad happens, happy when something good happens, etc).

We love it that Hallie will often come home, pick up a recent favorite book, and just start reading.  And apparently she is having a positive influence on Lea, too, who now does the same thing (including narrative retelling of the story based on the pictures she sees; to our knowledge Lea does not yet recognize letters and/or words).

Reading opens up the world and this is a great thing.  Apropos of this, here's a recent funny Hallie story:  For whatever reason, Hallie has always been fond of China.  We suspect a lot of this has to do with Hallie's love of panda bears, on the one hand, and her Nick, Jr. shows on the other (and most specifically Ni Hao, Kai Lan!, courtesy of which she has learned a couple dozen Chinese words as well as a smattering of cultural practices like dumpling eating on Chinese New Year; given that I will buy Hallie any kind of food she requests, she actually had me out purchasing New Years dumplings this year--which she refused to eat, of course.  So her "Chinese" food consumption is sadly still limited to fortune cookies.  Anyway, I digress.)

At school, a couple of months ago the kids were doing a unit on the world and on travel.  One of Hallie's teachers asked the members of the pre-K class where they had been.  Hallie said that she had been to China.  Hallie's teacher and aide checked with us, and we replied that she had not, in fact, been to China.  (Sadly, Hallie is not well traveled; she has been to New York, New Jersey, Ohio, Maryland and Washington, D.C.).


Apparently this was not just a random comment.  Hallie really wants to travel to China.  She is convinced that this is the only place that she can see panda bears (I hate to break it to her but my suggestion of the zoo will probably yield more in the way of panda bear watching than hanging out in Beijing will).  So Hallie was very very thrilled to read the bottom of one of her rubber ducks (we own a vast collection of these) the other day:  Hallie excitedly pointed to the raised letters and said, "Mama!  I got this in CHINA!"  I wasn't quite sure how to break it to her that most of the stuff we own at this point is likely made in China, but I thought that her comment was awfully cute.

Hallie is also doing a much better job in terms of writing and drawing than she used to.  She still has exceedingly weak fingers and this makes grasping a writing implement with a proper tripod grasp very hard work for her.  When she gets tired she'll revert back to bad grasps.  But her tripod is firmer than it used to be and she is drawing letters pretty appropriately (both in terms of how she produces them and in terms of drawing ones that are smaller and more uniform in size).  She loves to write words and has pretty good spelling for a not-quite-five-year-old.  I suspect she'd be writing even more if it weren't such hard work though.

Hallie does have some difficulty copying out images, though.  We need to keep an eye on this.  This first came up at her last Developmental Pediatrics appointment where she was administered the Beery-Buktenica Developmental Test of Visual/Motor Integration. Hallie was able to copy lines and crosses and circles pretty accurately but had much more difficulty copying more complicated shapes and configurations of lines.  She would often get the number of lines correct but not their spatial placement.  This is curious given how strong of a visual learner she is and how acute her visual memory seems to be.   The big question that Sharon and I had was whether this was related to a VMI deficit or her fine motor skill delay.  But it's definitely something we should monitor and address therapeutically if it turns out to be a real issue.

The other concern that we still have in terms of academics is Hallie's issues with attention.  We raised these at our last Developmental Pediatrics visit (which was about a month ago) and right now we are in a wait-and-see mode.  Given how much progress we've seen this year in terms of Hallie's behavior and learning and gap-closing, it seems to make sense to give her time to mature a bit more.  Great social maturity might even out some of the problems we are seeing with attention.  If not, we can take the next step.  Our first recourse would not be medication; not only would this exacerbate her eating issues but it also might make her focus too much on some of the stuff that detracts from her social skills/communication.  There are plenty of strategies for enhancing her attention that we can try before we get to meds (things like providing her with her own copy of a book when teachers are reading out loud to seating her close to the teacher to minimizing classroom distractions etc).

The attention issue is a big one since it really ties into some of our concerns about school.  In the best of all worlds, we would be able to place Hallie in a school that has small class sizes (12-14 would be ideal), a rigorous academic curriculum, and the potential for supports should she need them.  The only problem is that the first two characteristics are ones that you can more or less find at good quality private schools and the last is one that you can find in the public school system (because of the IDEA, which is the law that covers disabled students).  So there's an obvious disconnect here that will be difficult to bridge.

A year ago (or even six months ago), we probably would never have even considered the private school option for Hallie.  Her support needs seemed so great (we were thinking that she'd need intensive speech, OT, possibly PT, definitely a one-on-one aide).  So the only real option seemed to be moving out to one of the better suburbs on the Mainline that has a school system that supports higher functioning kids on the spectrum (or at least support them right now, since these things change and not always for the better).  Both of us are a bit uncomfortable with the notion of leaving the city; there are plenty of negative things about raising kids in an urban environment (no big back yards for swing sets and lack of space more generally, which is probably evident in every picture we take, is the obvious drawback), but there are lots of really good things about raising kids in a big city:  they become more savvy, world-wise, and edgy (in lots of positive ways), are more open to diversity and appreciating difference.  The cultural opportunities in a city are vast (not just formal stuff, like being able to easily and quickly get to the Franklin Institute or Philadelphia Museum of Art, but also informal ones that allow me to 'teach on the street' and use the neighborhood as a classroom).  And even though the suburb we would choose were we to choose a suburb is close to the city (about twenty minutes by commuter train or car from Center City), the honest truth is that we would probably rarely make it in to Philly. 

Anyway, we are not taking a move to the suburbs off the table, but we are beginning to explore other options.  The director of Hallie's kindergarten (who knows Hallie very well and has observed how much she has changed over the two years she has been at the YCCA) thinks that Hallie would be a very good fit for one of the private Quaker schools in Philly and so we will be exploring that option quite seriously.  Other than the staggering cost (we would need financial aid were we to go this route, unless we chose the one Friends school where tuition is accessible to the middle and lower classes), both Sharon and I very much like this idea.  The class sizes are small, the academics are rigorous and highly structured, and Hallie will probably be among other kids whose parents value education and where hopefully she will blend in with other academically advanced but socially awkward kids.  As a professor, I am more than slightly concerned with the ridiculously standardized testing-oriented environment that now prevails in public schools and would like to avoid this if at all humanly possible (not to go too far off on a tangent, but this form of education seems to train children to be seek 'right' answers rather than real problem-solving skills; teaches the creativity and curiosity out of them and replaces it with an emphasis on rote responses; devalues critical reading, thinking and writing; and is a big part of what is wrong with our education system.  Since so much rests on the results of these tests, teachers are no longer able to teach and instead train students to take tests.  See this interesting article for more about what is wrong about the Pennsylvania system).  Private school students are not subject to the same volume of standardized tests as their public school (or charter school) peers and this is a good thing.

So we will check out the private school option for kindergarten.  Since Hallie already reads fluently and is doing age-appropriate math, even if it turns out that she cannot handle a small environment with few supports, we'll learn this early on and at a point where the experiment will not pose a major impediment to her future academic goals.

We will also explore the public school and charter school options in the area.  I have interviews and open house dates set up at several and intend to set up one-on-one meetings with the principals at the schools that seem like good fits for Hallie.  Should we decide that the Friends schools are not for her, or should she not get into one of them, or should we not be able to afford the tuition, we obviously need alternatives.  And it would be nice for her to be able to go to school with some of her friends from preschool (most of the kids with whom she goes to school now live in our neighborhood and will be attending one of the public or charter schools in Center City or Queen Village/Bella Vista.  Alas, we will not send her to the school for which we are zoned for all sorts of reasons so we will have to get an out-of-catchment transfer, which is not an easy thing to do, or win the lottery for a much-coveted slot in a charter school, which is even harder to do).

And, finally, we will be touring the schools in the close-in suburb that I referenced above and interviewing their principals.

Nothing is off the table.  And the one thing that is always on the table around here is the concept of 'paying it forward.'  Sharon and I are quite nervous about the idea (and reality) of private school tuition (and what it will mean in real terms not only for the household budget but also for college savings).  But if there is one thing we've learned in raising Hallie is that it is essential to pay it forward.  The fact that we've been doing an enormous amount of work with her now -- all of the therapies, all of the over-scheduling, etc -- has really paid off.   Floortime emphasizes a developmental approach; the whole principle behind it is that one must build a strong foundation before moving on to higher intellectual and academic skills.  (Here is a very eloquent formulation of the Floortime/DIR philosophy).

I think these ideas could be generalized quite nicely to the K-12 setting; building a solid academic foundation (paying it forward in school) will enable Hallie to learn anywhere (well, almost anywhere).  It will instill in our kids a life-long love of learning, foster their intellectual curiosity, and give them the critical skills that will enable them to take charge of their education (something that is sadly missing among many of the college students whom I encounter; this is very disturbing to me.  When I started teaching 15 years ago, many more of my students possessed much more in the way of intellectual curiosity than my current students.  And it's not that my students today are worse, in objective terms--whatever those may be--than the ones I had back in the day.  If anything, their test scores are often higher than those of their predecessors.  It's just that they don't appear to be learning as much in high school as they used to.)

Anyway, even if we have an idea of what we want, whether we will find it for Hallie (and Lea, down the road) remains a huge question mark.  And this keeps me up at night a lot right now.  And if this is how I feel about kindergarten, how bad is it going to be when our kids are ready to apply to college?  I can't even think about that right now!

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.

Embracing the Craziness

I just spent fifteen minutes on the floor with Hallie and Lea ripping up pieces of paper (that in a former incarnation had stood in as some "Blue's Clues", replete with blue paw prints and all) and dumping them on the kids' heads. I'm pretty sure that you won't read about this sort of activity as a stimulating, engaging learning experience, but it epitomizes what we do when we "embrace the craziness," AKA practice Floortime/DIR.

Lea had been screaming non stop for a quarter of an hour because she's teething like mad. I was holding her on my shoulder while trying to get Hallie to eat something for dinner (tonight's goal: a half a piece of toast with fake butter. She had eaten the ends of a few fries, a lick of mini chocolate bundt cake, and a few veggie puffs designed for the newly-eating baby, but I don't consider that a decent dinner, despite the existence of the word 'veggie' in there. After all, those puffs have 25 calories for 75 of 'em and I can guarantee you that Hallie ate no more than 10).

So toast--the preferred food of the month--it was. But after three mini bites, Hallie put down the toast and got distracted by the TV (TV is our motivator for most things, alas). I paused the highly formulaic Wonder Pets episode and asked her to take another bite. But she moved on, and began to rip up some of the paper we'd used in our Blues Clues playing this morning. Try as I could, I could not get her attention. So what did I do? I took a page out of the Floortime book (so to speak) and began ripping up the paper with her. And then dumping it, confetti style, over the heads of both of the kids. Hallie instantly engaged with me and began dumping paper on my head, and on Lea's, too. She smiled wide, made great eye contact, and got re-engaged with me. And got her to eat three or four more bites of toast. So mini victory for me, and for Stanley Greenspan (the guru of Floortime).

Sometimes it is useful when I take my own advice. A week ago, Hallie's very excellent Special Instructor called me to ask me what I would do to re-engage Hallie when she seems disengaged. All I could think of at the moment was that A. should follow Hallie's lead and not worry about whether Hallie was talking. Step it down a notch, I said. Go back to basic sensory activities when pretend play seems beyond Hallie's reach. This is all the stuff I've learned in Floortime. Our goal is for Hallie to engage at level 6, developmentally and Greenspan-ly speaking. This level is all about complex problem solving. But most of the time, level 6, which is typical of 3-4 year olds, is beyond Hallie's reach. She is most comfortable at levels 3 and 4 and sometimes reaches into level 5. But she gets easily overwhelmed and when she is overwhelmed, we need to step it down a notch. Any engagement is better than no engagement. So whatever cartwheels you have to turn, or whatever confetti you need to transform paper into, to get her engaged is worth it. And it works, it really works.

Autism as a Spectrum

I still owe the blogosphere a Halloween post, but, before my mind becomes more addled than it already is, I just wanted to get some thoughts down on virtual paper. (Yes, I am posting at 4am again. We can attribute this to Lea's teething which proceeds full force and her mixed-up crazy lack of schedule).

On Tuesday, the New York Times published an interesting article entitled, "A Powerful Diagnosis; A Vanishing Identity" which I found very thought-provoking, particularly in light of some of my recent observations about Hallie and her development. The gist of the article is that the working group that is evaluating autism and other neurodevelopmental disorders for the upcoming revision of the DSM (Diagnostic and Statistical Manual)-V have found that there is no clear-cut clinical distinction between those who are diagnosed with mild (or high functioning) autism, PDD-NOS, and Asperger's Syndrome. They've also noticed that diagnoses morph over time; lots of kids, for example, start out with the PDD-NOS label during the toddler and preschool years but end up in the High Functioning Autism or Asperger's categories once they are in third grade or so and it becomes clear to observers what their functional level in terms of capacity to do school work, form relationships, use social and pragmatic language etc really is. So, instead of using these diagnostic terms, the DSM working group has chosen to focus on the core neurodevelopmental differences that mark everyone on the spectrum, such as problems with joint attention and social engagement and deficits in the area of communication/use of social and pragmatic language, and also give some space to the other health problems that those on the ASD also have, such as sensory issues, anxiety and attentional disorders, GI problems, food allergies, and seizure activity.

This is not a bad idea, but I can totally see how it might be controversial: Asperger's Syndrome has constituted a core identity position for lots of people in our culture and you can't just strip it away and tell Aspies that their identity no longer exists. And I think this change would lead a lot of people not to have their kids evaluated because, in our society, having a diagnosis of PDD-NOS or Asperger's Syndrome seems a whole lot less scary and is probably a great deal less stigmatizing than a diagnosis of Autism. (It's a whole heck of a lot better to be lumped in with Temple Grandin and, presumptively, Thomas Alva Edison or Albert Einstein than it is to be deemed to resemble Dustin Hoffman's character in Rain Man).

I think these are very valid points (heck, I study identity for my 'real' job when I am not raising the kids and taking charge of Hallie's complicated medical/therapeutic/and now insurance issues). But I don't really want to get into all of this.

What I do want to talk about is Hallie and how getting to know her and the issues that she confronts on a daily basis suggests to me that the working group on autism's perspective seems to be on target. In other words, as I watch Hallie grow and become more attuned to her neuroatypical (is that even a word? it should be) development, autism begins to look more and more like a spectrum and those sub-categories like PDD-NOS and Asperger's seem to hold a whole lot less water. Indeed, terms like "high functioning" or "PDD-NOS" or "Asperger's" may lead observers/teachers/parents to take the diagnosis a whole lot less seriously than is warranted; provide fewer services to the child who is, after all, "high functioning"; and lead to a romanticization of a label that may not be all that helpful in the end to the kid who is having trouble functioning in the world in which s/he lives.

1. Does language/being verbal matter?

Sure it does. I think we'd be terribly distraught were Hallie not yet speaking. Indeed, we don't have too far to reach into the past to summon up memories of the panic that we felt before Hallie did acquire speech. Hallie was a very late talker who did no babbling whatsoever (just some vowel sounds and even those were far and few between) and who went through over a year of speech therapy before language emerged, finally, some time around age 2. I don't think I spent a single day without googling terms like "apraxia", "late talker", etc back then. I read everything that I could; we tried a variety of biomedical and dietary interventions (Omega 3-6-9s; gluten-free/casein-free diets; magnesium); we invested lots of money in purchasing materials to teach Hallie (and us) American Sign Language (this was a great investment, by the way); and we took Hallie from specialist to specialist, went through numerous speech evaluations, and tried a whole lot of different therapeutic tactics. None of these produced speech, really, until we began to address Hallie's sensory needs, but more on those later.

Even once Hallie did begin to talk, her language remained sparse up until this past winter (about age 2.75) when it took off in terms of the number of words that she spoke. These days, however, she talks A LOT. She is constantly babbling, making demands on us, and, most prevalently, repeating sentences or parts thereof in what is classically known as echolalia (most of her echolalia is immediate--she'll repeat something she sees on TV or that we say to her, but some of it is becoming delayed--she'll repeat relatively short scripts that she has memorized).

But the issue here is not that she has a problem speaking--even though her little voice is raspy due to vocal cord paralysis, she can talk. The question is: can she communicate? And that's teh core autism issue that is our biggest problem, I think (though this problem clearly goes hand in hand with all the rest of the stuff that constitutes the spectrum). Hallie has very little pragmatic language. The way in which she communicates tends to be stereotyped (she learns a script like "Hi, X" or "Bye, X, See you Later!" or "Are you OK? I'm Alright" that is accompanied by fake falling) and, while she tends to use these in appropriate situations, she varies very little from the script. She doesn't have the capacity to communicate in a regular back-and-forth conversational manner with peers or adults. She can't answer questions easily, even when given a choice; has trouble reading body language and often responds to it inappropriately (so she might, for example, laugh when her sister is crying or we are angry with her); finds abstract concepts like emotions very hard to grasp and prefers to label concrete objects for us; probably has a lot of problems following narratives, especially when listening to them being read aloud when they are not accompanied by visual stimuli, even though she understands the individual words of which these narratives are composed; etc. All of this makes it hard for her to organize her own thoughts and get her own point across and, consequently, even when she does have something to say, she might stammer to get it out.

Now, that doesn't mean that we don't have a lot to work with where Hallie's linguistic potential is concerned. She has a fantastic vocabulary; is enamored of words, letters, and books; has a phenomenal memory particularly for visual stuff; and is a quick study. Oddly enough, the kind of echolalia that she manifests is, in itself a good sign. As Hallie talks more and more, she seems to be modifying her echolalia so that, while it is still scripted, she is using those scripts pretty appropriately and in a way that is individualized to the circumstances. It's kind of like she tests out these scripts by echoing them back to the TV or us and then practices them for days until she feels confident enough to use them publicly. Thus, we often here things from Hallie a good two weeks to a month before she uses similar constructions at preschool. Hallie is lacking in the department of self-confidence (we are convinced that she knows that she is different from her peers) and has an excessive degree of anxiety, particularly around social communication) and practicing her scripts a lot appears to allay some of these problems. This post from one of the autism blogs that I read sums up this phenomenon nicely.

As Hallie's language has begun to explode, it's also become abundantly clear to me that she uses the vast majority of her words and sentences to label things in admittedly more sophisticated ways ("It's a big orange tiger. Tiger says 'roar'!") or make demands on us ("I want a bigger circle icey!"). It's great that she's telling us stuff and expressing her needs, but one thing that is missing from Hallie's speech is an emotional component. Her language, like that of most kids on the spectrum who can speak/sign is imperative rather than declarative. Declarative language, as the mom who wrote this post put it, is aimed at transmitting feeling and ideas and not designed to get some sort of response. So, for example, when one says "What a beautiful day it is today. It's so warm and sunny outside and feels just like spring," one is using declarative language. It's aim is to share your perceptions with the people around you and, in so doing, make an emotional connection with them. Much of our daily conversation with friends is in the declarative form. In contrast, it's hard to form a nice human bond if all you are doing is barking orders at them ("Give me a piece of paper! I want a red crayon, please! Now I want the blocks!" aren't really conversation starters.)

The problem is: how does a parent/caregiver/teacher help a kid for whom 9o% of speech aimed at others (as opposed to scripted repeated phrases) get to the point where she expresses her observations of the universe in a way that gets a conversation and, with it a human bond, going? The one thing that others have tried that that we are working on now with Hallie is getting her to express her feelings. We hope that by modeling and using emotive language with her, where we talk about how we are feeling and why we are feeling this way, we can help her make connections between what she is feeling and why she is feeling that way (because she does feel; she just doesn't know how to express and communicate these feelings and that's part of what frustrates her). A simple case in point: yesterday in the bathtub, Hallie asked me to spray some cherry-scented (ugh!) Elmo shaving cream on the side of the tub. I asked her 'why do you want me to do this?' which is not a question she could answer (she has yet to acquire the almighty "why?" that is the bane of all preschoolers' parents' existence and would bring joy to my own ears.) Since I knew she could not answer this question, I helped provide the answer to her: "because you like it! It makes you happy!" Hallie understands 'like' and 'dislike' on a visceral level but has not expressed liking or disliking anything or anyone in a linguistic form. Likewise, she can identify a happy face (it has a smile on it) and even make one on demand, but she doesn't quite link the feeling that she has of joy or satisfaction (and I know that she feels joy; just watch her when she swings or bounces and you know she is full of glee) with the abstract word "happy." But concretizing this for her---linking the joy of playing in the shaving cream with the concept 'happy' and helping her realize that the things she likes make her feel happy and then providing her with a script helped. We did this exercise several times in the tub with the shaving cream (kind of like an ABA light exercise, in my mind) and then, later on in the evening, we did some more stuff that she liked and made her happy and substituted the new activity for the shaving cream and she repeated her new script, "I want X...because it makes me happy!" This morning, it was clear that she had internalized the lesson, at least to some degree, because she began to generalize this a bit further. I did the same thing with the concept 'scary': we visited the dentist yesterday, and Hallie always finds this scary but has never had the word for this. We talked about the appointment in advance, while we were there, and after we got home. For the first time ever, Hallie expressed to me that she was scared (she actually said "I little scared" when I asked her how the dentist made me feel); then again, this morning, she told me that "big animals are scary!" Now, among the preschool set, saying something like "big animals are scary" really could be the beginning of a very fun conversation.

So there is clearly hope there when it comes to the notion of pragmatic language acquisition but the point that I'd like to underscore is that none of this comes naturally to Hallie, who by all accounts has above-average intelligence and is likely going to end up as an Asperger's kid if the DSM-V doesn't change its approach to diagnosing ASD. It's the inability or impaired ability to use pragmatic language that seems to me to be a defining characteristic of the spectrum. Some have it worse than others, to be sure, but this is one of those things that separates folks on the spectrum from their neurotypical peers and, no matter how much ABA and Floortime and other therapies these kids get, pragmatic language on some level remains a struggle for them.

Why this is important should be fairly obvious: it's hard to form relationships with people if you cannot engage in meaningful spontaneous conversation with them; if you cannot understand their body language and cues; and if you have trouble with emotions. And that brings me to the second issue that seems to affect people on the spectrum, pretty much across the board:

2. Joint Engagement.

Again, there's a spectrum here. Some folks with autism demonstrate little to no capacity for this; others are fairly well engaged with the people in their universe but their engagement seems a bit quirky or eccentric. I'd guess that Hallie falls somewhere in the middle. Her eye contact sucks. There's no way around that. She would prefer to avert her gaze than to look you in the eye and I suspect that looking people in the eye is typically rather painful -- at least emotionally -- for Hallie because visual stimuli are so potent and so distracting to her and because she has a lot of problems organizing her sensory system. The times when she is best able to make and sustain eye contact is when she is engaged in sensory-regulating activities (like bouncing; having pillows and other soft objects thrown on her; being tossed up in the air; jumping; or playing music etc). This is because her sensory system is so out of whack and she requires a ton of proprioceptive and vestibular input to know where her body is in the universe and get herself back into equilibrium. So, if you give her this input, you can achieve joint attention and engagement (of which eye contact is a manifestation). Once you have that, you can build on the engagement to reach new levels of emotional interaction and give-and-take kinds of communication (be it verbal or gestural). If those new activities that are more sophisticated get to be too much for Hallie, she shuts down because she is overwhelmed and you need to retreat to simpler sensory-regulating activities (like tossing pillows or balls at her) to help her re-regulate herself. And sometimes those work great and other times, she is so overwhelmed that she needs to retreat for a bit before she can reengage with the people in her universe. Getting a handle on all of this is one of the most important things that we have learned from Floortime/DIR therapy. And, hopefully, over time, Hallie will learn to seek out less dramatic means of self-regulation and will demonstrate more emotional and developmental competence that will make it possible for her to stay engaged longer and in more sophisticated ways (and this will help build the blocks to logical thinking, effective executive motor planning, and the like).

The extent of Hallie's problems with joint attention/engagement really only became clear to us once Lea came into her own as a little person. Watching Lea engage with us and her universe has been a real eye-opener. For one, Lea prefers people to objects/toys. She uses her social smile and excellent eye contact to achieve a bond with me when I walk into the room (and she seems to know immediately that I'm there) and begins to flirt. She'll then do some sort of motor activity--bang some toys together, bang on a table--and anticipate or even demand that we mimic her action. This will then lead to a whole stream of 'circles of communication' that are accompanied by sustained eye contact, lots of smiling, and usually some noises/babbling. It's like a whole baby conversation and is hugely fulfilling. We didn't really have any of this with Hallie and, like pragmatic language, eye contact and joint attention did not naturally enter into Hallie's repertoire. She always preferred toys to people and still does. The inanimate world is the world she enjoys labeling and showing us. Indeed, there's a relationship between her lack of pragmatic language (her tendency to label rather than communicate) and her lack of joint attention.

Some day this labeling may morph into monologues on her favorite subjects (which is very indicative of those diagnosed with Asperger's) but regardless of whether she ever achieves the kind of verbal fluency that Aspies usually have, the core problem remains the same.

3. Sensory Dysfunction's place in the spectrum's trifecta.

A while back I wrote a long post on sensory integration disorder, so I am not going to repeat all of it here again. But the crux of the matter is that people on the spectrum seem to be out of kilter, each in his or her own way, where sensory issues are concerned. They either are over-responsive and find sensations--like noises, tastes, smells--so overwhelming that they cannot function in the presence of them; under-responsive ('ho-hum') about everything and need way more sensory information before they can respond to their environment; or some mix of the two.

That's what Hallie is like---she hears and sees so much and so well but has trouble hierarchizing oral data to glean from it the pertinent information that she needs to act; that's why she gets so distracted so easily. Visual cues, when clear and forceful enough (like the TV she loves and I have grown to hate, but also like the written word that I cannot help but love), provide much more organizing data to her and allow her to learn better. That's why we're incorporating a visual schedule into her repertoire that will allow her to anticipate the activities that await her during the school day and help her organize her life around them.

She obviously needs much more proprioceptive input in order to pay attention and function: if her feet don't touch the floor while sitting in a chair, she fidgets and needs to move around; a foot stool definitely helps to sit still longer. Her OT at school has also brought in a couple of different weighted vests to see if they help her pay attention to what's going on in the classroom during story time and circle time. And it's pretty obvious to me that, as we transition to a more formal school setting that requires her to sit at a desk and perform fairly sophisticated activities, she will require various adaptations and accommodations to her environment. We just don't quite know what these are right now.

And Hallie, obviously, also has her aversions. Most food falls under this category for her, but so does having messy hands (she will do some messy activities for short periods of time, but once she realizes that her hands are messy or greasy or whatever, she demands a wipe or needs to wash up), having her hair washed, and stuff of that nature.

Occupational therapy also really helps kids with sensory issues (regardless of whether they are on the spectrum), so we're looking forward to beginning this privately again some time this winter. What we do in OT helps us come up with ideas about what we can do differently at home and at school.

We all have our sensory likes and dislikes and most of us fidget and squirm to some extent when forced to sit for long periods of time at a desk. Some of us do better at auditory learning (that would be me) and some of us are much more effective visual learners (that would be Sharon). But the key issue is that us neurotypical types tend to self-regulate pretty well. We often do this without thinking about it: we might chew the back of a pen or a piece of gum; get up and take a brief walk or grab a glass of cold water so that we can return to our task and pay attention to it; or do less socially acceptable but still fairly normal things like bite our nails or twirl our hair. But the key issue here is that none of this sensory regulation comes naturally to Hallie. Like pragmatic language and joint engagement, this is all stuff we have to learn about her and help her learn and apply to herself. And, again, unlike her neurotypical counterparts, when Hallie's sensory system is out of whack, she will shut down (sometimes for extended periods of time, like days; she did this for a few days this week). Other kids will demonstrate their disregulation in more disruptive manners like extended tantrums. But, regardless, folks on the spectrum have a much harder time getting things back together after they have sensorily fallen apart than those who aren't on the spectrum do.

So, in the end, I am fairly certain that the new spectrum approach that's being bandied about where diagnosing autism is concerned makes more sense to me than the old three-or-four-distinct-disorders approach. To be sure, the degree of impairment matters and those who sit on the higher-functioning (for lack of a better term) end of the spectrum most likely do have an improved chance for a better outcome, especially if they are getting the proper kinds of services and treatment, than their lower-functioning peers. But regardless of whether one is high functioning or low functioning, anyone on the spectrum is going to have a whole lot of challenges where these three sorts of issues are concerned and really needs services/accommodations to help them reach their fullest potential. And maybe, just maybe, revising the DSM will help get more kids the help they need.

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...

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.

Eating at the Table

 

Still working on my mammoth preschool post, and several others. But meanwhile, we have some breaking news: Hallie is no longer eating in front of the television but at the table, with her family. We started this trend this past weekend, when we were down at Aunt Laura's and Uncle Bryan's house to visit with the cousins and rest of the family and take Hallie to her hippotherapy evaluation. We decided that, enough was enough: the TV is a major distraction; takes away from joint attention with real, live people; protracts mealtime in a deleterious manner; and is downright annoying. Plus, it really wasn't helping any more--she ate no better in front of the television than she might otherwise have done (which is to say, she eats poorly in both cases). So we fed her with her cousins at the table for most of the weekend. At least this way she'll have family meals.

I have to say that, so far, so good. Meals are shorter (around 45 minutes), more enjoyable (most of the time), and more normal. Plus, we get to eat (even if it's just a bit of the same stuff that we're feeding Hallie). We've moved the high chair to the table (we still need to use this or else we end up with meals that consist of four or five bites) and set up our second high chair for Lea (who is eating rice cereal with us at dinner).

We do end up reading with Hallie or coloring, but at least these are joint activities. Hallie can't really have a conversation with us that is substantive; we've tried asking her about her day, but her capacity to discuss things that she might have done out of context is limited, to say the least, and all parties end up feeling frustrated. We try hard around here not to make mealtime (or speaking, for that matter) more frustrating than it already is for Hallie.

So far, save some behavioral stuff at the tail end of meals when Hallie really has had enough of sitting there (even if she hasn't eaten as much as a typical kid might at a meal), we've had no major meltdowns. I've started having Hallie take responsibility for cleaning up her food. She won't use a plate, but she will replace all of the leftover food on her tray into the appropriate plates or dishes and help wipe herself and her tray down. And if she does pitch a bit of a fit, she needs to tell me that she is sorry. The rule is: we'll try to respect her (within reason, so, no a two bite meal is not good enough) and she'll try to respect us. At least we've got the rudimentary building blocks of etiquette even if she can't really handle spoons too well and likes to use her fruit purees (of which she is eating less and less these days) as a sensory tool (think fingerpaints).

And, as of today, we've hit 140 days without vomit, which is just a little bit shy of the number of days without vomit that we experienced in all of 2008.

We're hoping that the feeding therapists at Thomas Jefferson University, where we just completed yet another feeding evaluation, can help us in this process. They take the absolute opposite approach that CHOP does, which is to say that they are not using a behavioral approach (which often is tantamount to force feeding in our estimation) but a more child-directed approach, to improve mealtimes. We'll find out some time next week when they can work us in for weekly sessions.

It's sort of funny and sort of sad that it's so hard to find time in Hallie's schedule these days. She's the quintessential over-scheduled child, but rather than partake in T-ball and soccer and dance and gym classes, she goes to occupational therapy, hippotherapy, feeding therapy, and DIR/Floortime therapy, on top of her 17.5 hours per week of preschool, 3.5 of which are devoted to OT, speech, special instruction, and theoretically PT (but not actually, since there is no physical therapist who can visit her yet and the folks that run the 3-5 program are gleefully violating Hallie's IEP...presumably they will be doing so a bit less gleefully when I get back in touch with the nice lawyers at the Education Law Center with whom I have been having some interesting conversations of late...). Anyway, we were considering adding in private speech therapy and a social skills class on top of this, but, frankly, there's nowhere to add these. Besides, as Steve, Hallie's Floortime therapist, asserted the other day when I was discussing this with him at the beginning of Hallie's session, it's not clear that Hallie is ready for social skills classes yet--she needs to be able to fluidly complete 50-60 'circles' of communication (not just speech but gestural, body language, etc) in order to get the most out of a social skills group. Hallie can currently complete 20-30 on a good day, but this is still a lot of work for her and, so, what we need to do right now is focus on getting her to another, higher developmental stage.

Which brings us to issues related to preschool, and that needs to be in another post because it's already plenty late around here and I need to get some sleep before I begin my own over-scheduled day in a few short hours.

Milestones, Measurements, Meanderings

Once more my post is going to end up being a great big grab-bag of assorted goodies. I guess I have to face the facts here: there is no way in the world that I can find the time to do more than one post every week (if I'm that lucky).

As usual, it's been pretty busy around these here parts. Our lead up to the long Memorial Day weekend was punctuated by Lea reaching a really significant milestone: rolling over from back to front while on an absolutely flat surface. She'd been working on this skill for days and had figured out that grabbing hold of the toys on her gym mat would provide her with some of the leverage that she needed for the first big flip.

Needless to say, neither I nor Sharon (nor anyone else, for that matter) witnessed the event, which happened late on Thursday night, May 21. I was off in the kitchen grabbing something to drink and when I came back into the living room, this is what I saw:

 

Here's a close-up:

 

Of course, I flipped Lea right back over onto her back and watched how, within seconds, she was back on her tummy.

What's more, Lea has amazingly good head control; while this is not evident at all in the shots above, you can see what I mean here:

 

So, ever since Thursday, Lea spends most of her waking hours (which decidedly are NOT during the day but in the evening and at night) practicing her moves. She has mastered rocking from her back to her side and then onto her back once more but she has not yet tried to go from belly to back. And it often seems that she surprises herself when she lands on her belly and seems to wonder, 'What the heck am I doing here? Why did I do this?' It's all pretty funny.

Of course, even though parents should not compare their kids, Sharon and I have been struck by the fact that we have not had to teach Lea how to perform these moves; she just does them so naturally and effortlessly. And we cannot help but think back on when Hallie was little and how we had to teach her how to position her body so that she could flip over. It took months of practice before Hallie mastered this. Even though Hallie rolled over with some coaching at around three months corrected, she did not really begin rolling until she was well into her sixth corrected month and this with much training. Her next developmental milestones (sitting independently, scoot-crawling, pulling to stand, and even cruising) followed very quickly thereafter, but mastering how her body worked was a major effort for Hallie and a challenge for those of us who helped her along the way (namely, me, Sharon, her special instructor and her occupational therapist). For Lea, these are natural moves and we're getting a glimpse of what parenting your typical baby looks like.

The same is true of language development. Lea is cooing, shrieking, making cute cat-noises, and vocalizing lots of sing-song vowels right now, and often doing this by mimicking us. Sometimes it's not quite clear whether we're doing the mimicking or she is, but what it amounts to is a very rudimentary form of conversation. She has also begun to blow lots of raspberries. We experienced none of this with Hallie, who, between the vocal cord paralysis and her language delay/disorder, was a very quiet baby. Hallie is finally beginning to do quite a bit of talking at home, or at least when she is feeling comfortable, but she's still quieter than your average kid, especially in public. Between shyness, a lack of confidence about speaking (since we really do think she understands that this is a major issue for her, and for us), and her expressive language limitations, speaking -- and especially conversing -- remain a real struggle for her. She will talk now, and she even is using sentences consistently. Most of these are requests ("circle icey please!") or descriptions ("I sign 'tree'") but at least her language is coming in. But skill acquisition and refinement remain so hard for Hallie and something upon which we have to work, work, work. We suspect that this will be far different for Lea.

Speaking of Hallie and skill-building, we had our IEP last week. The meeting itself went more smoothly than I thought it would and the team that the Local Educational Agency (Elwyn) assembled seems pretty good. My preparation of IEP goals, with the assistance of Hallie's speech and occupational therapists, did provide some good guidance and, with the exception of several sticking points, the IEP itself is fine.

Nonetheless, these are important sticking points. Some of the goals specified, particularly by the Special Instructor, seem to be set too low. For instance, one of the goals is that Hallie will use social greetings with adults without prompting. Hallie is basically doing this already and has little problem saying "Hi so-and-so" when she sees so-and-so. What she cannot do is take the conversation to a meaningful level beyond that. That should be the goal upon which to work, and not social greeting.

Likewise, Hallie is already following one-part commands with little guidance (as long as you get her attention) and this should not be a goal (as it is now). Rather, she has more problems with two-part-related and unrelated commands. She can do the former fairly well and the latter not at all. These should be our goals.

Not all of the IEP goals were low-balled, but we do need to correct the ones that were. And we need to have her re-evaluated for Physical Therapy sooner than four months from her 3rd birthday. This is a major weakness for Hallie, and unfortunately she has had no PT service at all thus far. We are unsure that twice monthly PT visits are sufficient and need to know whether it's essential to step these up in terms of frequency sooner than September or October.

The real sticking point, though, is procedural. The LEA never explored placing Hallie into a publicly-funded regular preschool situation and came into the IEP meeting with a sole placement in mind: a reverse mainstream school. The IDEA stipulates that the LEA is required to explore a continuum of placements beginning with schools for typically developing children and only moving down to programs that are more restrictive if it's impossible to place her in a program that is less restrictive that is appropriate for her educational needs, even if she requires supports in that program. That never happened. We did try to get Hallie into a Head Start program down the block that seems very good (has dedicated classes in movement, music, and art each day that are taught by specialists in these fields, a very small classroom for beginning students, etc) but the program is full and, while Hallie is number one on the waiting list by virtue of her disabilities, it's not likely that she'll get into that program. For various reasons, we do not want Hallie in the program that is the more restricted environment, and we did a lot of legwork to find her a placement in a private program that is geared toured typical children but inclusive (and very supportive) of students with IEPs, but given that the LEA fell short of fulfilling its legal mandate, our goal is to see if we can get it to defray the cost of the private program. I'm not sure how far we want to go in pursuing this but it's worth a shot, at least. Hopefully we'll be able to resolve this all relatively amicably before Hallie needs to start school, but the special education/IEP saga continues for now.

One last update before I call it a night: we took both kids in to see the pediatrician today and Lea weighs 12 lbs, 9 ounces and is 24.5 inches tall. She's at around the 40th percentile for height and about the 25th for weight. Thus, she's not much bigger than Hallie was at this age (at just over four months, Hallie weighed 12 lbs. 9 ounces). That sort of surprised me.

Hallie weighs an even 31 lbs (but this is with a dry diaper on) and is 37.5 inches tall. She's just around the 60th percentile for both height and weight. It's nice that she's caught up in something!

We were a bit disenchanted with the ped today, and not only because the office visit took two hours and both kids were distraught by the end of it (and Hallie ended up missing her nap as a result of all of this). He seemed dismissive of our concerns about Hallie's development and suggested only that we should throw her into a typical preschool with no supports at all to see how she does. He doesn't seem to get Hallie (in contrast to the Developmental Ped, who totally got her). As Nadia pointed out, Hallie shuts down when overwhelmed and she finds little more overwhelming than a big room (or schoolyard) full of kids running around. Shutting down won't help her language, or any of her other skills, in the least. She's not going to just start having conversations because other kids are having them and she's not just going to start eating three square meals, two snacks, and two cups of milk because that's what other kids do. As our Developmental Ped noted (and as the story about rolling over with which I began all of this suggested), Hallie needs to be taught skills, she needs to rehearse skills, and she needs to trust her environment in order to practice her skills. A lot of good things are happening right now in terms of her development because her Floortime DIR therapy (and our use of it and the Hanen method at home) are really empowering her. She's surrounded by people sensitive to her interests who are helping her close conversational (and gestural) communicative interactions. We are hoping that her Special Instructor, Speech Therapist, and sensitive preschool teachers who are aware of her delays and issues will build off of these interests in assisting her negotiate the communicative challenges she will face in preschool. These supports are not gratuitous and won't label her so much as help her catch up (at least that's the plan).

Our ped is worried that these things will stigmatize her. He is similarly worried that not eating ice cream will be a source of stigma and that getting her checked out by a Ped Neurologist to see whether she has CP could stigmatize her. This is something that I am increasingly concerned about since Hallie's gait and run are very awkward and unnatural looking; Hallie falls a lot and cannot negotiate stairs even with the support of a banister and sometimes even with support of a banister and a person holding her hands. And I cannot begin to count the number of times I've heard the phrase "well, she has low tone throughout her entire body" in the past month. When things quiet down around here, we probably will ask for this referral (even if he does not like giving it to us) because, if she does have mild CP, there are perhaps things we can do to help her that we are not already doing. Our plan as parents is to provide Hallie with all the support that we possibly can to help her be the best possible Hallie she can be. That was what we signed on for when we made the momentous decision to resuscitate at 23 weeks, knowing the risks she faced both in the NICU and down the road, and anything short of doing everything within our potential that we possibly can for her simply feels like dropping the ball on her. And that's not something either of us ever want to do (unless, of course, it involves burying her in a ball pit to satisfy sensory cravings, but that's another matter altogether).

But before I end this post, a few more cute pictures are in order:

 

 

 

Hallie playing "This Little Piggy" with Lea's toes. She said the whole thing, and then went on to repeat the process on one of her dolls.

Hallie's been doing much more in the way of real pretend play these days. This is an emerging skill and still quite fragmented, as our Floortime/DIR therapist puts it. But she's moved beyond the basic social emotional levels that are the first stages described by Stanley Greenspan (Floortime guru) and onto more sophisticated stuff. Here Elmo is having a conversation on the telephone:

 

And here Hallie has put her dolls to sleep (borrowing a few burp cloths from her sister in the process):

 

And, speaking of burp cloths, I did get a shot of Lea loving on one of them:

 

Not to be outdone in the sensory department, here's Hallie after she buried herself in the couch cushions:

 

And, finally, not a picture, but an important statistic: we're up to 99 days without vomit this year and this is amazing to us. Last year we were closing in on Labor Day by the time we reached this goal; this year, we're not even quite at June. Woo hoo!