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...

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.

Neurodiversity, or Wishing the Spectrum were a Rainbow

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

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

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

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

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

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

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

Why high functioning?

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

Why Aspergers?

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

Why this doesn't quite fit:

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

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

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

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

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

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

Totally Sensational--Hallie and Sensory Processing Disorder

It's become clear to us, over time, that so many of Hallie's issues stem from her out of whack sensory system. Even though I've read, re-read, and re-re-read The Out of Sync Child, I must admit that I remain a bit baffled by how Sensory Processing Disorder and precisely how it works to impede things like fluid communication and socialization (things like eye contact, playing well with others, conversational skills); gross motor movement (like running and jumping and walking); fine motor skills (like bilateral hand use); and eating. Here is a not bad description of sensory processing disorder for those who want to read more about this.

What I do understand is this: Hallie is under-responsive to some kinds of sensory stimuli, like those involving touch and vestibular movement, and hence craves sensation (in other words, she is a sensory seeker) to get enough information to negotiate the world well. Here are a couple of easy examples: she walks and runs with a heavy foot not only because she is low tone and unable to walk and run in any other way (although she is low tone and this complicates matters further) but also because walking and running in this way gives her nerves (and sends her brain signals) the information that she needs and craves. It looks funny and it may put some undue pressure on her joints and growing limbs, but it also helps her organize herself better. Another example: Hallie likes to bury herself in things and pour things on herself---these things can be pillows, lego bricks, balls, stuffed animals, whatever. Whenever she needs to calm down, this is what she does to help regulate herself.

Hallie is also over-responsive to some other kinds of stimuli. She is a visual learner and her visual sense is a bit over-responsive. What this means is that she is easily distracted by the things that she sees--whether that's the television (a big distraction for her) or things going on in other parts of the playground, or people and animals walking down the block. She sees these things out of the corner of her eyes and is forced by her sensory system to turn around and look or to run off in the direction of these stimuli. This can be a major problem, since it often means that Hallie is constantly turning her head to the side and looking over her back when walking down the street (which leads to falling, banging into things, and not paying attention to the things that she needs to heed, like oncoming vehicles) and it also can interfere with the learning process (like not being able to listen to a teacher during storytime because something else in the room catches her eye).

What we need to do as parents is figure out how to provide her with the stimulation that she requires to receive and process information in a way that doesn't get in the way of learning, safety, and other good things like that. We've been working in Floortime/DIR and OT on these skills and I have to say that whatever we are doing is beginning to work. I watch Hallie carefully to learn what helps, and what does not help, and then we try to do those things at home. At school, we'll have to work with OTs to design adaptations that allow her to retain focus (we hope that these are minor: things like placement in the classroom near the teacher and away from doors and windows where there might be more movement and consequently more visual and auditory distractions; having Hallie sit on sensory cushions that provide her with input; the use of weighted beanbag 'snakes' or stuff like that on her shoulders that help her keep still; fidgets for her hands, etc). And she may just need to get up and run around every now and then to regulate herself so that she can return to her desk and learn. All of these modifications need to be written into IEPs to make sure that everyone understands why she needs these things and how they function and so that her teachers don't just end up thinking that she is a flighty wild-child who doesn't sit still. But that's still in the future.

Back to the present: I noticed during Floortime/DIR this past week that Hallie adored the sensation of the smooth side of a Mondo Inside-Out Spiky Stretchy ball on her feet and hands and that she really grooved on walking on the spikey surface (on the outside--not the inside...that makes her very unhappy). So, like any good parent who thinks they might just open a sensory gym in the future, I went out and got her some (these join her collapsible tunnel, play-house, inflatable ball pit, and gym mat). The ones we ordered were a little smaller than the ones we used at therapy but she enjoyed them nonetheless:

Hallie asks for these all the time (they are a restricted toy since Hallie also finds the spikes irresistible as a biting item...the knobby chewy tube I just bought her and the long silicone chewy tube she received from her feeding therapist do not have the same caché for her, though Lea quite likes them). We hoped that having the spikey balls on her feet during meal time might help her eat more appropriately (in terms of quantity and in terms of not using her food as a sensory plaything) but no dice on this one, so far. Still, we're happy with this addition to our therapy tools/toy box and will probably get her some bigger ones if we see them around.

As I said earlier, Hallie has also devised a variety of ways of providing herself with sensory input that she needs in our (very small) house using everyday objects. She used to take out all of her stuffed animals and creatures and place them in the middle of our living room and roll around on top of them; then she moved to placing them on the couch (sometimes removing the couch cushions first), along with balls, and rolling around in these; then she decided to place them behind the couch and lie on top of them, sandwiched between the couch and the wall. I am particularly fond of this variant since it doesn't involve any cleaning up of toys at the end. I'll try to get a photo of this to post.

What I do have a picture of, though, is Hallie and Eliza Grace's reaction to pillows being piled on top of them on the big chair in the living room. One of the nice things about your child having speech and beginning to communicate is that she can tell you what she needs. On Friday night, after dinner, Hallie requested pillow piling. She built her new turn-taking skills into the process by directing us: "now Hallie turn!", "now Eliza turn!", "now Hallie turn!" , "now Eliza turn!" When the big pillows were equally distributed on top of the girls, the two of them kicked them off and hooted and smiled like crazy and then the process began again.

They were so happy after all that pillow-piling that they ended with a nice smoochy.

Anyway, Hallie doesn't just crave tactile stimulation but she also craves vestibular input--basically this is anything involving motion and balance and includes stuff like swinging (Hallie's favorite activity), jumping up and down, and spinning. That's why she loves fast rides, roller coasters, and the like. At home, Hallie enjoys piling the aforementioned pillows in front of the big chair and jumping off of the chair onto them.

At the playground, Hallie enjoys typical playground activities more than your average kid and certainly more than children who are over-responsive to sensory input (that would include me...I am pretty sure, after reading a lot about dysfunctional sensory processing that I am the opposite of Hallie in terms of sensory profiles. That's why I hate heights, fast motion, uncontrolled wheeled activities, and get dizzy very easily). Now that Hallie's body works better--her gross and fine motor skills are improving--she is much more effective at meeting these needs on the playground.

Hallie and Eliza had plenty of opportunity to get all the sensory input they craved at Smith Playground yesterday:

 

 

 

But their favorite activity was sliding down Smith's giant wooden slide:



They would have done this forever!

Even little Lea got in on the action at Smith Playground, even if she was a bit too young to enjoy the slide (actually, she would have enjoyed it; we just were not about to put her on a burlap sack and let her slide down what amounts to a giant bowling alley on a fairly steep incline):

 

And she also got to get in on the teeter totter action:

 

Anyway, a great day was had by all. After Eliza and Anne departed for New Jersey to visit Nana (Anne's mom and Eliza's grandmother), we headed home and rested (no nap for Hallie, alas) in preparation for the arrival of Hallie's PT. After seeing Hallie negotiate the playground with her friend Alex (who came to visit and dine with us yesterday evening), the PT decided that she had mis-assessed Hallie. Yes, Hallie is low-tone and, yes, her left side is weaker than her first. But she does jump with both feet off the ground and she runs funny because of her sensory stuff and not because she has too. Ditto with toe-walking. That's why it's called idiopathic toe-walking in her case. Her heels are tight and can use some stretching. But she can probably get away with something like a Sure Start shoe inserts or Polly Wogs rather than really extensive bracing/orthotics. That's a relief because Hallie, who is a bit of a shoe queen, would bristle at wearing extensive orthotics. We will have to buy her more supportive shoes, too, I think: she walks so much better in her Keens than she does in your average Stride Rite shoes, but we're happy to do this. Anyway, our appointment with the orthopedist is in a couple of weeks and we'll know more then. But we are feeling better about this based on what the PT saw yesterday.