Literal Thinking

I am unabashedly plagiarizing this idea (and my comment) from one of my favorite autism bloggers, Lisa Quinones Fontanes over at AutismWonderland.  In a recent post, she relates a story about how she discovered the extent to which her son, Norrin, who is just a bit older than Hallie, is a literal thinker.  In short, this is a problem that many with autism (often of the higher functioning, Aspergerian nature) have with metaphor.

Anyway, I was contemplating posting this before Lisa beat me to the topic (hey, at least I can say that I am frantically working away these days on an article and can use this as an excuse for why I am not keeping up with blogging; once I meet my self-imposed August 1 deadline for submitting said article I shall start using my need to write a conference paper and/or prepare for the upcoming semester as an excuse!).  But Lisa is, as I have already noted, an inspiration to us slacker/bloggers.  And so I leave you with this story:

Our literal moment of the month: I had taken the kids out for pizza one day last week. We were seated at the table in the pizzeria and everybody was happily eating lunch. I turned to Hallie and said, "Isn't it great that we are eating out today, kiddo?" She flashed me a puzzled look and replied, "But we're NOT eating out. We're eating inside." She continued, pointing to the tables outside on the street, "THEY'RE eating out. We're eating IN."

I guess the kid has a point; we really weren't outside!   And I just love it that she stood her ground and explained her perspective to me.  Every day, she's getting better at this, at answering questions appropriately, and at asking questions of us.

Insight into Hallie's Mind

Having found her voice (or having been given a new, temporary one by the wonderful ENTs at CHOP), Hallie has turned into a chatterbox lately.  We love it.  She still has conversational skills that are well behind those of her peers, but she's making progress and we are so grateful for this and I think that Sharon and I know that there is no going back--we need to make sure that Hallie keeps her voice.

Anyway, since Hallie is talking more, she is also providing us with greater insight into how she thinks about the world.  She had the following conversation with Sharon last night which is interesting on a couple of different levels:

Setting:  Sharon came home late from work last night after running a couple of errands related to our little family party for Lea today. So there had been no time for dinner (and I suspect that Sharon did not have much time for lunch, either, since she was catching up on work having spent the prior two days dealing with doctors visits, sick kids, lost car keys that led to a major crisis that was ultimately resolved when we discovered that Lea had hidden the car keys in our nanny's mitten, and a bunch of other fun stuff like that).  So Sharon was starving and her stomach began to growl a lot as she was reading Hallie her stories before bed.

Hallie looked over at Sharon sympathetically and said:  "Mommy, you have a tummy ache!  Don't worry mommy, I will get you some water and you will feel all better!"

Hallie proceeded to get out of bed, run over to the bathroom, climb up and get down a dixie cup and fill it with water, bring it over to Sharon and ask her to drink it.  Sharon, of course, complied.

Hallie, satisfied, declaimed:  "There you go mommy!  You will feel all better.  You won't have a tummy ache anymore."

This was such an interesting conversation.  First, it shows how empathetic Hallie is.  She notices when others are in need and she really tries to help them.  She is constantly getting things for Lea (and Lea, having learned at the feet of the master, reciprocates by getting stuff for Hallie all the time.  This of course does not prevent them from having knock down, drag out fights over stuff just like any other healthy sibling dyad).  And she uses her own experience to try to figure out how to help others, which makes perfect sense (though down the road I suspect that we will need to work with her on that ever important theory of mind issue to help her figure out that others might want something different from what she desires).

But this was really interesting on another level:  it is clear that, when Hallie says that her stomach hurts, she means (or at least sometimes means) that she feels hungry.  But she has no idea that this is what is going on with her body.   It may also be clear now why it is that she constantly requests water.  She drinks tons of water, all day long.  This is a great thing for her body in general, but not a great way to satiate hunger.

One interesting thing that lately has struck me about autism, or at least Hallie's version of it, is that the communication deficit that is so central to this condition is not just related to communication with the outside world.  Rather, Hallie has trouble communicating with herself.  And if you cannot interpret the signals that your own body is sending you, of course you are going to have problems communicating with others and interpreting their body language, right?  This may be why professionals have noticed that sensory integration problems are prevalent in autism.

Anyway, while all of this is extremely interesting from an intellectual standpoint, what I want to know is how to help Hallie make those connections so that she can feed her hunger appropriately.   Conventional feeding therapy doesn't really do the trick (and it's certainly not going to teach her how to interpret hunger.  It  kind of does the opposite).  If anyone has any ideas about how to do this, please let me know!

Road Trip 2010: Part One

This post is WAY overdue, but we've been kind of busy around here. (I know: excuses, excuses).

Anyway: back at the very end of June, the kids, Sharon and I, and our wonderful niece Sarah headed to Maine for the wedding of my close grad school friend, Marc, and his long-time partner, Jorge. Marc and Jorge had already gotten hitched in Toronto, CA, where Marc teaches and where it's legal for same-sex couples to wed. They were hoping that the state of Maine would evince a level of enlightenment similar to that of its northern neighbor, but, alas, no such luck. So their second ceremony was held in a location where gay and lesbian married couples dare not speak their wedded name.

It was a lovely occasion, and the newly re-weds make a ravishing couple:



But more on Maine in a bit.

The drive from Philly to Maine is not one that we could have done without stopping on the way. Nor is it one that we could have done without borrowing Aunt Laura's minivan, which is equipped with seating that accommodated all five of us (having been an occasional desperate rider squished between the two carseats in the second row of our Hyundai Tucson, I can assure you that I am personally quite grateful for Aunt Laura's generosity in lending us her van). Not to mention that Aunt Laura has a DVD player, which made the ride all the more enjoyable for the kids (though after a million re-plays of Laurie Berkner and Jack's Big Music Show DVDs, I am not sure that I feel quite the same way).

We left after Hallie was done with school on the ultimate Wednesday in June (about five hours after we expected to depart) and high-tailed it up to Mystic, Connecticut, for our first leg of the journey. Hallie was awake the entire way but Lea slept for the majority of the drive (after being a very irate passenger for the first hour or so. Lea is not a happy backseater and is not nearly as fond of DVDs as is her older sister).

For the girls, the highlights of our hotel stay revolved around running the halls (which I am sure made us very popular with our vacationing neighbors; we did make sure this running happened only during day time hours, though) and riding the luggage carts. Here are some pictures of our arrival at our hotel in Maine, so it's technically out of order, but it should give you an idea of the nature of the sport:



After getting in late on Wednesday night, we took our time waking up and eating breakfast on Thursday morning. Amazingly enough for our brood, though, we managed to be out the door by eleven. Our first vacation day was spent at the aquarium:

We saw manatees:

Here Sarah and Hallie are posing by the manatee exhibit, which was the first place we visited:

Our kids have a big thing for penguins, so we spent a decent amount of time at that exhibit:

And did our best to pick out the frogs who hid among the lily pods:

We visited the sea lions both outside and watched them perform their very cool tricks indoors:


Lea slept through part of the sea lion show but Hallie was thrilled by it and wanted to get a closer look at the sea lions when the show was done:

After the sea lion show, we took a break for lunch. Amazingly, Hallie ate nearly two slices of pizza and polished off a chocolate ice cream. All that looking at sea creatures really worked up an appetite in our reluctant eater, I guess:



Then it was off to the indoor exhibits, which include jellyfish:


And regular fish:



And turtles:

And lots and lots of sharks:


The aquarium also sported touch tanks and both of the kids indulged (and exhibited approximately zero fear, even when it came to touching sharks and slimy creatures).

Here's Hallie waiting for the sharks to come by:


Amazingly, given how sweet Hallie is, they were not biting (thank goodness! They are really, really small sharks, though, so I think Hallie's hands would have coexisted with them peaceably had they not gone into sensory overload--sound familiar?--and shut down for the afternoon).

But, fortunately, there were other opportunities for touching things. Hallie made a bee-line to the exploration tanks where she grabbed hold of a starfish and lifted it out of the water within seconds of our arrival. I did not get a shot of this because I was too busy getting her to put it back (as the signs noted that lifting the little sea creatures out of the water was a big no-no).

But I did get a shot of her swooping down for a crab, which she touched with much glee:

Here she is trying to get in on the action with the little boy next to us who rather annoyingly kept reminding me that the kids weren't supposed to lift the creatures out of the water:


Now it's Hallie's turn (and my turn to remind the little guy who was probably in the vicinity of 8 or 9 that Hallie was merely 4 years old and very excited):


Of course, once the touching was done, Hallie needed to wash her hands (it was like she suddenly became aware that all of those fish and creatures were pretty slimy; this is kind of her MO. She will often eat her meal, which involves buttery toasts or french fries or chocolate ice cream quite frequently because those are three of the seven or eight things that she will reliably ingest, and then suddenly come to an awareness that her hands are REALLY dirty, slimy, or greasy and need them cleaned IMMEDIATELY. It's a weirdly delayed reaction, but at least this means that she will comfortably try new things (unless it's food) and eat those foods even though they send her into eventual sensory overload).

Speaking of sensory overload, we did have a bit of a potty-training setback that began during our Connecticut leg of the road trip. We put Hallie in underpants for the aquarium and she did wonderfully for the first half of our stay. She let us know (sometimes by grabbing at her pants and once by telling us) that she had to go and we made it back to the bathrooms in time even when this involved some sprinting (thank goodness for the sit-and-stand stroller we brought along with us since I am a bunch faster than Hallie is when it comes to racing to the potty). She peed after lunch and before we headed into the fish tank area but did not quite make it to the potty in time when she needed to poop. No big deal: we were well-equipped with wardrobe changes and life went on.

The real issue we faced vis-a-vis pottying ties back into the sensory stimulation stuff. After returning from the aquarium, we went out to the hotel pool for a bit. This, in retrospect, was not the smartest thing to do. While the pool was nice and empty (a good thing), it was also getting chilly out since it was fairly late (around 5pm, and Connecticut's shoreline is a lot cooler in the evening than the city of Philadelphia tends to be). So while the pool, being heated and all, was pretty warm, the air outside was not. We played for a bit and Hallie enjoyed swimming (so much so that she did not want to get out and change for dinner. And let us know this in no uncertain terms by jumping into the water at about five feet or so of depth after the rest of us had gotten out. This did not please me, to say the least, and while she was fine since she was wearing a personal flotation device, it provided me with yet another reason to be helicopterish and, even more importantly, underscores the need to get her private swim lessons pront0). Anyway, I digress. So, we pulled her out of the pool and wrapped her in a towel and headed back to our room.

Of course, keeping Hallie wrapped in a towel is no easy feat, and, regardless, the hotel lobby was chilled to a frigid temperature (at warmest), so Hallie's teeth (and mine) were chattering during the walk to the elevators and the walk down the second floor hall to our room. When we got there, Hallie needed to pee and so we took her to the bathroom right away. The second she began to do so, though, she got frightened by how hot her pee was next to her cold, cold skin and started yelling that it hurt. We worked through this (we thought: more on this below), got Hallie dried off and into clean clothing and headed off to a rustic lobster dinner by the docks of one of the neighboring hamlets.

Hallie enjoyed dinner (even if she did not eat much. Certainly no lobster, but she did have part of a hot dog, part of a bun, and some potato chips, which all in all was not bad). She played with the toys we brought, was thrilled to see the family of skunks living under the docks (we were not and were thankful that they did not spray us, even as we were not grateful to the mosquitoes who decided we were tastier than lobsters). And most importantly, given the earlier events of the evening, Hallie did not try to jump in the water, which was a great relief to a very panicked me.


Having Sarah with us was great, and not just because she could take some pictures while I ran around after one kid and Sharon ran around after the other. We were thrilled to treat her to her very first lobster dinner, which she enjoyed thoroughly (even against the overtones of my seething anxiety about Hallie's penchant for jumping in the water when expressly forbidden from doing so). Here's a lovely picture of Sarah in the sunset by the dock:


Anyway, when we got back to the hotel, we were thrilled to find that Hallie's underwear were still dry. This thrill, however, abated when she refused to pee before putting on her pull-up and pajamas and getting in bed. Once more she began to scream: "It's hot! It hurts!" And she would not go.

At 3am or so, she woke up, once more screaming that she was hot and it hurt and would not pee. And her pull up was bone dry.

By this stage, we were a bit worried about what was really going on. She had been holding it in since at least 7pm (so 8 hours or so) and, given that she was a recent embarker on potty training and does not reliably wipe in the correct direction, I began to think that Hallie had a UTI. She did not seem to be running a fever (which is a usual symptom, something we learned from Lea's forays into the wonderful world of UTIs), but it's possible to have an infection without spiking one. Not to mention the fact that we did not have a thermometer with us so we couldn't exactly confirm that Hallie was fever-free.

Being the preemie mom that I am and having memorized our pediatrician's number (and of course having it on my list of contacts on my phone just in case I have a brain blip), I decided to call the excellent after hours folks to see what they thought. I detailed Hallie's 'symptoms' to the nurse and she advised that, if Hallie did not go by morning, we needed to get her to an ER for catheterization pronto.

Now this is not a fun process (having lived through three failed attempts to cath Lea at our ped's office this winter, I speak with some authority on this manner) even when you are not a few hundred miles away from home. It is even less fun if you have to ponder the relative merits of driving an hour back to Yale/New Haven, an hour and a half up to Providence, RI, or a couple of hours up to Worcester, MA to visit a pediatric hospital versus finding a doc-in-the-box in Mystic who might or might not have experience catheterizing special needs kids.

I spent the next several hours awake contemplating these options and downloading screen shots from google maps that would help us locate one or another of the places we might visit while on vacation (!!!) and praying that Hallie hurried up and peed in her pull up (which is not what most parents actively engaged in toilet training their kiddo usually wish to do).

Morning came and Hallie woke up. Thankfully her pull up was soaked (and I mean soaked) at this point.

We took her potty (as we usually do in the morning upon awaking) and once more she screamed about how hot it was and how it hurt. And that's when it dawned on us that the whole issue was a sensory one, and not a medical one.

The downside: potty training took a major step back for the balance of the vacation (though she did evince a willingness to try to go potty again after a few more days of this).

The upside: we did not have to cut our vacation short or acquaint ourselves with the medical options available to us when on it.

In the end, everything worked out and we had a great time on the balance of the trip (during which we not only got to go to a fabulous wedding but also got to meet some fabulous 23 weekers), but all of that is going to have to wait for my next post...

Because Rachel Coleman Always Says It Better Than I Do...

If you are fighting the system to get your child services, if your child is being written off as unworthy, and if you need some inspiration about how to channel your anger into something constructive, you need to read this post....

Thank you, Rachel and Aaron Coleman, for fighting for your daughters with every ounce of strength that you had (and probably then some) and then channeling your energy into providing a resource to all of us out there through Signing Time. You guys gave Hallie the capacity to use language before she could ever vocalize and helped pave the way for us to communicate with her.

We Are Aware of Autism

This probably wasn't always true, though. I think it's a pretty safe bet that, in one of my more ornery moods (which are too common, alas), I was intolerant as the 6 year old melting down in aisle 4 of the grocery store, and condemned his or her parents for not raising him properly/disciplining her effectively/raising him correctly. Back then, I would stare at the kid, glare at the parent, and feel all smug about things.

Those days are gone.

We are lucky insofar as Hallie is not--at least at this point--prone to tantrums (unless, of course, she is asked to eat/somehow takes into her mouth something that triggers some sort of sensory aversive reaction. Then all bets are off). But Hallie has her other behaviors that puts her on the spectrum: she checks out when she is overloaded, or stims (she spins or flaps--although she's learned to pretend to be a bird and says 'tweet tweet' most of the time when she's flapping now) or can't seem to settle herself down. And, even though she does a lot of talking and asking of questions (she is particularly fond right now of asking us "what is that?" where pretty much everything is concerned), her language is peculiar. She clearly has trouble with pragmatics and with following along with things that other people say. She takes much longer than her peers to answer questions or get a statement out. And she cannot filter out ambient noise or visual stimuli and is far more prone to distraction than most nearly four year olds.

We just had a follow up with Hallie's developmental pediatrician earlier this week. There's no question that the enormous effort that we're putting into helping Hallie is paying off: between the Floortime/DIR, hippotherapy, and the extra speech and OT that we're doing, the changes that Hallie has undergone over the past six months have been enormous. Her eye contact is far better than it has ever been, she is beginning to initiate interactions with adults and peers in much more meaningful ways, and she just seems so much more engaged with the rest of the world. We regularly play turn-taking games here at home (and I know that she's doing this at school with her peers, too). And Hallie is grooving on showing us stuff (of course, she'll often grab someone else's artwork and bring it over to me and say something like "Mama, look! Here's my pretty picture!").

But this progress in no way means that she is 'recovered.' I don't want to step into a minefield, but my sense is that those who are autistic can cope but not really 'recover'. Autism isn't a disease so much as it is indicative of a different kind of wiring. Even with neuroplasticity, it's not like her brain can just rewire itself along 'typical' lines; rather, we can help her form associations that allow her to develop mechanisms to cope with some of her sensory difficulties; help her developmentally even if she does it at a different pace and along a different pathway than her neurotypical peers; and even out some of the eccentric edges that she has.

The Developmental Ped that we see was thrilled at Hallie's progress and sees it as a testament of how well Early Intervention can work. And yet she was surer than ever of her diagnosis: Hallie is a high functioning autistic. She always will be. Yet she is capable of great things.

Speaking of great things, here's a picture of Hallie having a very nice lunch with me at the CHOP cafeteria in between her two appointments (pulmonology at 11 and developmental pediatrics at 3pm). Even if she only ate a quarter of a piece of pizza (at most) and took a few sips of her apple juice, she was extremely cooperative and enjoyed sitting at the table with me while I managed to eat about ten bites of my salad:



Insofar as raising Hallie has taught us to be more involved and engaged parents and better advocates for our kids and less likely to take things for granted than we would have otherwise been, we feel grateful for what we have. And yet it sucks. Between our anxiety about the future (will Hallie ever have a real friend? will other kids ever invite her to their parties? will she be able to negotiate elementary school/middle school/high school/college/the real world?), the gearing up for constant fights with insurance/the school district/providers/ourselves when things get hard to handle, and the sheer exhaustion of our daily routine, we're more than personally aware of autism. Add to that the toll that autism takes on us as a family (the things we cannot do or do not do because they are too stressful or we're too tired to contemplate doing them) and the friends we've lost (who were admittedly not worth being friends with in the first place, but still, it sucks when they pull away because your kid is not advanced enough/weird/quite possibly contagious), and you've got quite a bundle.

But the thing of it is this: we're aware of autism because we have to be. What we'd like more than anything else is for folks out there to be aware of autism regardless of whether they are personally touched by autism. So here's what I think: be kind to people. Don't just assume that the meltdowns that a kid is experiencing are a result of the kid being spoiled/badly raised/worth writing off. Rather than standing in judgment, try to put yourself in another parent's shoes and appreciate that something else might be going on there. And try to value people for who they are and not for what you think they should be. And if you do know someone with autism or whose family is touched by autism (or prematurity or some other special need), be nice to them. Offer to help: we don't have a lot of help and we're stressed out and could use some. Even if you don't feel comfortable taking care of the kid with autism, offer to provide the typically developing sibling(s) with a more typical experience than they usually have (remember, they are affected by autism, too, and probably could use a day out by themselves when they get to do typical things and don't always have to tailor their lives and their schedules around their autistic sibling who needs to go to therapy/can't handle the noise and crowds of parks/movies/etc). Or just be a good friend to the parents and listen when they need to rant. Just be aware that autism is part of many families' realities and that they are doing the best job that they can.

OK: I'll come down off my soapbox now. Even with the disruption of Hallie's preschool being closed for spring break and the disruption that this (and Sharon's need to work late several times this week) have posed for Hallie, we've had a great week. The weather today was particularly glorious and so I had the kids out in the park for a bunch of time this morning and they really enjoyed that. Hallie is beginning to get the hang of swinging herself (it's a bit of a work in progress but she's no longer melting down when I don't let her onto the baby swings and she's making some advances in the leg-pumping department). And she had a great time on the slides. Finally, she went up to a little boy named Max and asked to play baseball with him. Admittedly she was more interested in the t-ball setup than the little boy, but that's okay. In my book, just going up to a strange kid and engaging him, rather than grabbing his toy/waiting until he was no longer interested in it and approaching it, is great.

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.

Feelings

Yesterday evening, after I got home, Hallie was playing with Sharon and having a blast. She turned to Sharon and said to her: "Mommy, I feel HAPPY!"

We thought that was great. For Hallie to express herself using language is alone a huge thing. Remember, this is a kid who, up until recently only used language to label or describe things she saw (admittedly in ever more complicated ways, so we've heard some "It's dark outside" and not just "Look! It's Sam Wiggle. Sam is Yellow.") or to demand stuff of us ("Hallie wants Pirate Booty!" or "Watch Diego Saves Christmas" sorts of constructions).

But even more impressive is that she is expressing abstract feelings: we've heard "I feel cold" a few times but 'cold' is a fairly concrete concept. "Happy" is not. Happy is an abstraction and happy is what Hallie was feeling when Sharon was playing with her.

Even more significant was an exchange that took place a few minutes later. Lea was in the living room and got upset about something. Hallie went over to Lea, who had begun to fuss and cry a bit and said to us, "Lea feeling sad." Then she hugged and kissed Lea and turned to us and said, "Lea feeling happy." Hallie totally got that a. crying indicates sadness and that b. hugs, kisses and cuddles make you feel happy.

This is HUGE. Remember, Hallie used to laugh when Lea was crying. We weren't sure why, but we were pretty convinced that Hallie was fairly confused about emotions and wasn't making the connection between crying and feeling sad and needing comfort when it concerned anyone but herself: she was pretty clear about seeking out comfort if she was upset but was unable to understand that this applied to others, too. At least where Lea is concerned, that hurdle seems to have been surmounted (though this still requires generalization).

What does all this mean? Hallie is developing the ever-important Theory of Mind. If you are a parent of a child on the spectrum, you know precisely how significant this is. If not, here's a good place for more information about why Theory of Mind is so essential to typical development and interacting in the universe. Basically, what it comes down to is this: if Hallie can understand that other people behave in certain ways because they feel particular emotions (in other words, that other people also cry when they feel bad and smile when they feel happy), she will be able to form meaningful connections with them, predict their desires, understand that their desires are not always the same as her own, etcetera etcetra. In other words, Theory of Mind is an essential precursor to friendship.

And there is no doubt in my mind (theoretical or otherwise) that Lea is Hallie's best friend and that Hallie cares a great deal for Lea. That she can take into account how Lea feels and want to make her feel better makes me and Sharon feel very, very happy.

Social Stories and the Importance of Experiencing Rituals

Chanukah is behind us and Christmas is right around the corner. We are a sort-of hybrid family: I was raised in the Orthodox Jewish tradition but have always loved the holiday decorations we were never permitted to have; hence, I am a big fan of Christmas trees, jack-o-lanterns and spooky spiders, and could be easily convinced to array our home in turkeys and bunny rabbits, too. Sharon is a 'mutt' (her phrasing, not mine) whose ancestors include Ukrainian Jews, Anabaptists from Germany, and Catholics from Ireland. Her dad was raised Protestant (his family was not a big fan of either Jews or Catholics); her mom was raised Catholic but by a Jewish mother who never converted; and she and her sister attended Catholic school as kids, celebrated Chanukah and Passover with their Jewish cousins as kids and Christmas at home, and both now identify as Jewish but this is more of a cultural (read: food) identity than a purely religious one. Anyway, since holiday traditions are important to the family, we are interested in sharing these with our children.

The sticky part is that children on the spectrum (or at least Hallie; as the old adage goes, if you know one autistic person, you know one autistic person) don't always 'get it' when you discuss traditions with them. Indeed, it's sometimes unclear to us what Hallie understands when we tell her stuff. She is clearly bright, and she clearly knows so much (to recap again, well before she turned two she identified all letters of the alphabet; could match colors and shapes and identify them by name--though not speak their names; could count to twenty (some of her first words were numbers); and is okay with following simple directions when you ask her to do something tangible (as long as she 'hears' you and doesn't get distracted). But she has auditory processing issues, is a visual learner, and most likely has some variety of Semantic Pragmatic Language Disorder. She still cannot answer simple questions effectively and it's not clear that she gets abstract concepts at all. So, for example, if you ask Hallie what her favorite color is, she'll just tell you what color she is wearing that day. And, if you have just explained to her the entire Santa story (Santa brings toys for good girls and boys; he comes down the chimney on a sleigh that is pulled by reindeers; he eats cookies and milk; and he leaves the presents under the tree) she might a. bring you a stuffed Santa; b. bring you a stuffed reindeer; c. point to the Christmas tree in our living room and say "My tree! I love my tree!" and d. unwrap a present if you are unwise enough to have one under the tree already.

What she will not do is put it all together. So, if you ask her, 'who pulls Santa's sleigh?' she'll echo "Santa!" If you ask her what she wants Santa to bring her, she'll answer "Christmas!" She makes connections, and she knows all the words ('present' is a favorite of hers and she loves opening packages and boxes and thinks that all of their contents are hers), but she has no sense of how these things work together and cannot grasp the abstract concept of the Santa Claus story. I suppose that this means that she will avoid the trauma of finding out that none of this is real and that mommy and mama ate all the cookies, but the problem is that we so want her to believe. This is a rite of childhood, of innocence.

I talked with her preschool teacher about this last week. Kristen brought it up with me, and not the other way around. She had the kids make some reindeer food for Rudolph & co. and Hallie had a great time playing in the oatmeal. But she had no idea what she was doing. And both of us sensed that this is a global problem, not a localized, reindeer-related one. She happily and cheerfully follows directions and transitions beautifully from one activity to the next; she loves doing what the other kids are doing during group activities and is an avid listener to stories during circle time. But she has no idea why she is doing what she is doing; she merely goes with the flow because this is what is expected of her and Hallie, if nothing else, is an aspirant teachers' pet who would like to make a good impression (except for when she wants to test her limits with us, her moms, or with Miss Flaura, her guardian angel/PCA at school). But we would like her to understand what she is doing, and not just do it.

Not understanding stuff often leads to sensory overload for Hallie once an activity is no longer quite so structured. For example, she loves music time at school beyond imaginable belief and knows all the words to songs and will sing them when she is comfortable. But she has no idea that they are planning to have the kids perform Christmas songs at the church where preschool is located in front of an audience of all the kids' families and that there is a Christmas pageant followed by a dinner. I am sure that this has been explained to all the kids, but Hallie cannot process this information. So, on Tuesday night, when this event happens, she will once more come un-moored and look for some corner in which to hide.

How do we deal with this as parents? The only thing that I think can work is constructing a very concrete social story for Hallie and using her peers (props, I suppose) to act this stuff out. I have been telling her about the performance, but I know she isn't understanding me. On Monday, should school not be canceled due to snow, I will walk her to the church where the performance will be, and will show her the dais, and have her go up on it, and will sing a couple of the songs with her there (we have a list of songs provided to us parents in the preschool family newsletter and they're pretty standard fare). I will talk to her teachers and Miss Flaura about the need to explain this social story to her, too. Maybe, if things are concrete enough (she will have been in the church, on the stage, singing) she will feel less lost this time around and won't be quite as overwhelmed as she was at the Summer Camp musical and the Hallowe'en costume parade).

Enacting the Santa ritual will be harder. It would be most helpful to be at our own home and show it to her, preferably in the company of a couple of other children who already know what they are doing, so that she has a body memory of this event. That's what really helped with Halloween. While the teachers had been talking about Halloween and had the kids make various holiday-themed crafts (they picked and decorated their own pumpkins and fashioned jack-o-lanterns out of paper bags and orange paint and spiders out of egg cartons and pipe cleaners) and had the kids parade around in costume, the significance of all of this eluded Hallie who just thought of these as regular old craft making/art and pretend play. What really worked for her was having Eliza Grace here and experiencing the magic of getting into costume and trick-or-treating alongside the other kids on our block, who were similarly decked out. That made things real for Hallie and lent them significance, and she continued to talk (in her own word-economizing fashion) about trick-or-treating with Eliza Grace for weeks after the event.

We'd love to replicate this sort of body memory production where Christmas is concerned but we don't have other kids with whom we can do this. It is kind of socially unacceptable to lure a couple of Santa-believing children to our home with promises of presents provided to them on Christmas morning just so we can make this part of things come alive for Hallie. Lea is obviously far too young to understand anything right now, though I suspect that, later on in life, Lea will probably do a lot of translating of ritual and abstraction for her big sister. And Christmas is one of those holidays where it is difficult to get people to alter their particular family practices, particularly when no one quite understands that your child, who is on the autism spectrum, isn't going to just figure this stuff out for herself because, after all, the other 99% of all children have done so with no special parental effort.

It's sometimes hard to be a parent of a kid who doesn't quite fit in to the typical world. It makes you empathize with your kid on the spectrum: it's a weird world out there with a ton of social codes and rituals that seem odd and that moves at a very fast pace. Figuring out how to slow this down and make sense of it for your child so that they can mind meaning in this bizarre universe is our job as Hallie's parents. We'll figure something out; Sharon and I always do. But there's no question that it could be, and should be, easier.

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.

Pumpkinhenge

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

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

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

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

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

Soon, the display looked like this:

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

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

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

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

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