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!

Potty Training Update

It's been a bit of an up-and-down week in the land of potty training Hallie.

While Hallie is apparently more or less fully trained at school, her performance on the home front has been a bit more checkered. We've been sending Hallie to school in 'big girl underwear' for about six weeks now.  (We are still using the extra thick Gerbers' undies that are very soft and more absorbent than the cuter princess and Kai-lan panties that Hallie has in her drawer.  Hanna Andersson is rumored to make excellent training pants, too, but at about 400% the cost of the Gerbers', these seem a bit too much of a splurge, particularly considering that we need about 10 clean pair of these on hand at all times just in case). Since summer camp started at the beginning of July, she's had two accidents at school, I think, and those were both in the first week.  They are on a fairly regular potty-break schedule at school (all of the kids are asked if they need to go at the transition from one activity to the next, and these transitions take place every half hour or so).  And I am sure the sheer visuals help the teachers figure out who needs to go on off times since four year olds have an uncanny way of pulling at their crotch when they really need to get to the bathroom.  But Hallie has also asked her aide or teachers to take her to the bathroom a few times in the past week and none of these were false alarms (signaled by Hallie in an effort to avoid undesired activities). 

This is all wonderful.  I still pack four outfits for her each day but these are beginning to seem a bit like overdoing it and I'm going to consider scaling back to three pretty soon.

Home potty training, however, has been a bit more hit or miss.  We began this whole adventure by using the strip down approach where we have Hallie stay naked from the waist down (sometimes complemented by a waist up strip that leaves her streaking through the living room with the exception, perhaps, of high heel princess shoes, cowboy boots, or some other accessory.  Visuals omitted to prevent parents from being referred to DCFS, of course).  This works like a charm and Hallie has no accidents when we do this.

But she cannot remain naked at home forever (we hope). So we have been trying to keep her clad (sometimes we lose this battle for sensory reasons) most of the time now.  And this has been a bit problematic on the pottying front.

We continually (and I do mean continually) ask Hallie if she needs to go when she is wearing undies at home, and quite often she'll respond in the negative.  And then go anyway.  Even in cases where we just her on the potty (which is situated in the living room still so as to not add in the problem of her having to take a break from a preferred activity) for an unproductive session, she's been wetting herself almost immediately after we help her pull up her pants.

This is a bit vexing, to say the least.  On Friday, after Hallie emptied her bladder immediately after returning home from school (and being asked if she needed to use the potty, a question to which she emphatically responded "NO!") and then again peeing on herself while in her current favorite costume (a very warm dalmatian costume that you could not pay me enough to wear on a day when the temperature was in the high 90s).  I let Hallie know that I was disappointed and upset after the first accident (exaggerating my response so that it would be clear to her) and demonstrated to her that I was even more upset the second time around.  We're working on feelings right now (and Hallie is really beginning to understand these, so much so that she is more often demonstrating appropriate empathy when Lea gets hurt and fashioning some creative, good responses to Lea's crying -- like offering her a water bottle or getting her a bandaid -- that actually are quite helpful).  So Hallie definitely got it.  But what we're hoping she gets even more is that she is not going to be seeing that (now laundered) dalmatian costume until she spends five days accident free.

I am happy to report that we just completed day two of this experiment.  Perhaps her bladder control is coincidental, but she's managed to take a long round trip car ride (about an hour in each direction) to and from hippotherapy on Saturday and went out to dinner and dessert with us and her lovely cousin Sarah, who was down for the weekend, and stayed clean and dry the entire time.  She asked to go to the potty three times at dinner/dessert and actually peed two of those times (the third time we think was attributable to the fact that the historic saloon in which we ate dinner had pretty cool bathrooms with a lot to look at--and flush).

Also interesting to us is the fact that Hallie has woken up with a dry pull up two nights in a row.  I think this has more to do with the fact that she went to bed pretty late on the eve of both of those events and hence probably emptied her bladder fully before bed.  I have no aspirations at this point of attempting to night train Hallie any time soon.

So hopefully Hallie's gotten the message about needing to win back the dalmatian costume.

I find it interesting, though, that all of the problems we are having are at home.  One theory (to which Sharon subscribes, I think) is that the root of the problem is that we've been keeping Hallie stripped down at home and that this has allowed her to become a bit lazy.  Because she's naked from the waist down, she continues to dribble out her pee (which is what babies do before they have bladder control) on the potty any old time and is not self-aware enough to keep it in at home when she's got underwear on.  This seems plausible but is only part of the story, I think.  I think that another component of this is that she is so exhausted--mentally and physically--once she gets home from school that she loses it a bit (we see this with other behavior, too).  She expends so much time and effort controlling herself--staying on task, engaging with kids and teachers and therapists, and also holding her bladder--that she just can't do it anymore when she gets into our house.  Our home is a safer place for Hallie to let go, literally and figuratively.  I think she gets that we are here for her no matter what; she's not particularly in need of winning our love and respect since she already has that; and she's probably less embarrassed at having an accident at home than she is at school.  While she is beginning to understand that her behavior sometimes disappoints us (and she responds appropriately by getting upset herself), I imagine that she still feels safer with us than she does with anyone else (at least I hope so, because that is a good thing).  So I'm willing to cut her some slack (even if I really won't return that costume to her until the five days have been checked off).  She's come a long way in terms of this potty training thing (and so much else) in a very short period of time.  So we'll plod on and try not to get too disappointed by the fact that we're still only 80% there or so.

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.

When Development Happens Differently

Well, here it is, the big development post. I have a few moments (I HOPE!) while both kids are down for their naps, and if I don't begin this now, I doubt that I'll ever write this post. I've sort of been dreading it for days.

Let's start with the good stuff, which is not in the evaluations that we have received for Hallie. First, Hallie really is beginning to expand her language spontaneously. She is singing songs to herself these days (three favorites are the ABC song, of course, and Old MacDonald's Farm, and the theme to Elmo's World). We're also hearing more several-word phrases ("big, big, red firetruck!" is for some unknown reason a personal favorite of hers right now; but she's also using a lot of modifiers for lots of different nouns and asking for things using multiple word constructions that are far from rote "put it on!" "push me, Mama!" "i want circle icey"...since apparently she prefers the storebought ice to our icemaker's rectangular output). We have also been sitting her down and asking her "what" questions and, if she is paying attention to what we are saying, she can answers these accurately most of the time ("what is Caillou riding?" we inquire and she retorts, "a bicycle." "What is on his head?" to which she says, "a helmet."). It's also clear that Hallie is reading a greater number of words than we knew she knew. We knew about "dog," "baby," and "bus" but it turns out that she can read "cat," "water," and several others. She also can recognize what words are from their signs. She has ASL flashcards with the sign and word on one side and a picture and word on the other. If she knows the word by sight, and you cover the sign, she can tell you the word just from the letters. If she doesn't, she pushes aside your hand, looks at the sign and tells you what it means. We own around 50 of these cards and she knows most of them and understands the concepts that they represent. Yesterday, I sat with her on the bed and played with them with her (they are among her favorite toys). I asked her what and function questions like "which one do you drink?" giving her a choice between water and cracker and "which one barks?" giving her a choice between duck and dog. She got 11 correct out of 11 and then lost focus.

Which brings us to one of the main issues that we are having with her right now, which is that of attention. She has no problem demonstrating attention and joint attention (with us) if she is interested in a task or game but as soon as she loses interest, which is often only after a minute (yesterday's game took two minutes or so to complete, so it was an extra long engagement for her), she starts to stare off into space, doesn't seem to care about the answer being right, dumps all the lacing beads, etc. She has a longer attention span for sensory activities (burying herself in balls or stuffed animals, jumping up and down on the couch, swinging etc), which is not terribly surprising given her sensory seeking profile, but we are at a loss as to how to improve her attention span and are beginning to think that ADHD seems like a diagnostic path down which to consider barking.

So those are the good things, and the guarded things. The bad things are the ones that are contained in her evaluations. It turns out, according to the Multi Disciplinary Evaluation (MDE) done by the agency to which the Philadelphia School District outsources its testing and service coordination of 3 to 5 year olds that, on average, Hallie is 32% delayed. The delays break down as follows:

1. Social/Emotional Development: 68% (32 % delay)
2. Adaptive Behavior/Self Help Development: 76% (24% delay)
3. Physical Development: 74% (26% delay)
4. Cognitive Development: 76% (24% delay)
5. Communication Development: 65% (35% delay)
General Development: 68% (32% delay)

In other words, at 34 months, she came out as being at around 23 months developmentally. Our big fear is that things will get worse if she remains this far delayed down the road (think of a 9 year old acting like a 6 year old and you get the picture). Some of the delays will undoubtedly improve if she gets services; for example, our gross milestone-meeting kiddo has never had PT and needs it desperately. No one seemed to care that the quality of the way in which she was meeting some of those gross motor milestones was substandard (for example, scoot-crawling rather than up on all fours, running with arms out way beyond when you are supposed to, and falling when there is the slightest unevenness to the surface, such as the transition from pavement to curb or pavement to schoolyard mat). PT will no doubt help her with this. But lingering in the back of my mind, at least, is whether Hallie has a mild and undiagnosed case of CP that prevents her from doing stuff like walking up and down stairs unassisted (she cannot do this, even if holding onto a banister) or pulling herself up on playground equipment. She wants to do these things but cannot, and so she compensates (she will resort to crawling the stairs) but she also does get into physically dangerous predicaments (like getting halfway up the monkey bar ladder and then having her strength give out). It makes it impossible for me to take her to the playground without watching her constantly and heading up the equipment with her, which is impossible for me to do if Lea is strapped to my body, and so we don't go to the playground unless someone else is watching Lea. This totally sucks because it also means she gets less practice and work out time to help build the strength she needs.

Of greater concern are the cognitive, social/emotional, adaptive, and communication delays. I do think that they underestimated Hallie's receptive skills by a considerable amount (her CHOP evaluation at 33 months placed her cognitively at 26-27 months, which we felt was far more accurate), but even so, she is not quite doing the stuff that a kid her age (even her corrected age is doing). One of our senses, given the recent Sensory Profile we had done, is that her sensory issues are getting in the way. She scored as definitely under-sensitive to Auditory Senses and as having an impaired Auditory Processing Function. This means that "Hallie almost always requires others to speak loudly in order to get her attention and is distracted in noisy environments. She frequently requires tactile cues in order to attend, ignores others when they are talking, finds ways to make noise with toys, and requires increased time to respond when her name is called. Auditory processing deficits may impact Hallie's ability to attend and participate in functional activities until completion." They will definitely make it harder for her at school.

She has a probable difference in visual processing, too. She likes looking at herself in mirrors more than others do, she loves bright and fast paced shows and frequently avoids eye contact.

She has a definite difference in terms of her tactile processing. Which means that she enjoys playing with food, splashing, finger painting, etc to distraction and this is what causes her to dump blocks on herself, bury herself in stuffed animals etc. She is seeking out sensory stimulation to get information she needs in a way that other kids don't need to do.

Her vestibular processing also comes off as definitely different. She needs to swing, jump on trampolines, spin, be bounced and tossed around on therapy balls to get the vestibular input she needs to calm herself. One thing we've been trying to do is give her this input before she attends to a close, fine motor table-top task in the hopes of improving her attention on the latter task.

And of course she has oral sensory processing issues. Some of these are related to her food issues that are medically based and are getting better over time. We can only hope that she stops putting toys and other inedibles in her mouth and starts putting more food in it (and sensing that it's there...she has been doing some food pocketing lately that is worrisome).

Anyway, a lot of the sensory issues, taken in combination with the communication/language issues have made Hallie seem pretty spectrumy (as in ASD). Right now, she's cleared of this, but depending on what happens next, she may well find herself back on the spectrum.

Meanwhile, we need to figure out how to help a kid like ours learn in school. Staying on task and communicating are the issues that I am focusing on right now, but that's just the tip of the iceberg. Meanwhile, I've had huge knots in my stomach and a major headache in anticipation of the IEP that is upcoming on Wednesday. Things have not gotten off to a good start with the agency handling 3-5 year olds in special education (this is a major understatement) and I have an impending sense of doom and dread. I am hoping that I am just being my Telly-like self (as in the Sesame Street character) and that all goes better than we fear it will and that we get the placement we want. Check back later in the week for an update (if I have the energy and emotional capacity to do one, that is!)

Meanwhile, I'll leave you with a brief update on food and vomiting. We made it to 90 days and then, likely as a result of some Burger King Chicken Fries, had a horrific day yesterday. Still, a 15 day run of no vomit seems pretty good to us and Hallie seems to be on the mend today (and is getting a very nice nap in, too, which she really needs considering that she woke up at 2am on Sunday and tore her room apart for three-ish hours before falling back asleep and had a really awful day yesterday that involved two bouts of vomiting).

And, for those of you who tune in for the pictures, I will leave you with this charming photo of a sisterly stretch:

 

Growing, Growing, Growing

 

When we last left the heroines of this story, Lea was a tiny little infant who was still in a blob-like phase. Fast forward through the two long weeks of my virtual absence from the blogosphere. She is now a HUGE baby (my best guess is somewhere in the area of 13 lbs., which is shocking to me since that's what Hallie weighed when she was around 6 months corrected and Lea isn't even 4 months old yet) who is beginning to bat at toys and has rolled over from tummy to back a few times. These have all been rolls while-on-somewhat-uneven-surfaces so we're not counting them, but it's pretty clear that our little one is going to begin moving in earnest sometime soon. When she's on her belly, she tends to move her legs in a swimming pattern (I am sure there is a more technically correct way of putting this, but that's all I could come up with on my own) that suggests a desire to scoot. And when she's on her back she rocks around a lot, which means that rolling over onto her belly cannot be long off, either.

 

Lea's a particular little baby. Just a couple of weeks ago, her single mode of eating involved snacking (a half ounce of breast milk there, a half ounce of breast milk here) but now she's taking anywhere between two and three ounces of milk at one time. This is a definite step in the right direction, but you better not run out of milk mid-bottle---it gets her SO mad. And when she's mad, she lets you know it! Also, if you are me, don't ever try to feed her while sitting down. She only likes bottles from me while I'm pacing across the floor, holding her in the crook of my arm. And, never, never try to put her down in the swing these days while she's awake...the swing is only for sleeping. She vastly prefers hanging out on the living room floor or in the changing table part of the pack and play where she can watch what's going on around her (and catch some of her big sister's television shows. We are horrified that Lea already seems so interested in Barney, Sesame Street, and Caillou and we can add 'less television exposure for Lea' to the list of the million reasons we want Hallie in preschool soon).

But the funniest thing that Lea likes to do is to love on her burp cloth. We began to notice this a few days ago. Often, we'll use the burp cloth to prop up the binky while she's in the swing, or we'll end up dropping it on the floor or in the pack and play next to her whenever we put Lea down. After walking away to do something else, we'll invariably come back to find that the burp cloth is over Lea's face. Whoever finds it this way will move it out of the way, only to find it back over her face two minutes later. And if it's next to her, rather than on her in some fashion, Lea will reach out her hands and grab it and throw it over her own face. We've tried to encourage her to use her organic plush bunny lovey instead, but Lea seems to prefer the burp cloths to any other security blanket. Maybe it's because it smells like milk (both fresh and burped?) Who knows. Right now it's very funny (but hopefully we will not have to explain to future college roomates and such why it is that she must carry one at all times!) Lea especially loves the burp cloths made by our excellent friend Sara, who is a nurse in the ICN at Pennsylvania Hospital. On top of being mom to Charlie and Aaron and a nurse, Sara is also hugely creative. She also took some very wonderful black and white pictures of Lea back in mid April that she framed into a collage for us and dropped by yesterday. In a shameless plug for her microbusiness, consider visiting the website where she displays the patterns of her keikicloths; they really do make a lovely baby gift!

Anyway, I digress. The other thing notable about Lea these days is that, if she is entirely asleep on her side (her preferred mode of sleeping since it allows her to sleepily locate Sharon's nipple all night long), she will stay asleep even if others in the bed get up. This worked out very nicely for me on Tuesday morning because it meant that Lea could get the rest that she needed and Hallie and I could have some quality time together.

 

 

So, even though Lea still likes to sleep on people, there's hope that we can someday put her down in her own bed. I'm sure that this will disappoint Grammy, though, who loves to hold her for hours and hours. She got a chance to do so last weekend when Sharon took the girls down to visit (while I was visiting my own mom, who broke her hip and femur a couple of weeks ago, but is doing quite well right now, all things considered):

 

 

Hannah, who just turned six, is hamming it up for the camera in the foreground. It's hard to think of Hannah as one of Hallie and Lea's little cousins anymore. She looks so grown up! Here's a picture of Hallie and Hannah; I wish the light on this were better (Sharon might be able to photoshop it to improve it somehow) because it's otherwise such a great shot:

 

You may have noticed how much neater Hallie's hair looks in these shots.  Sharon took her in to our salon to have Whitney, who, in addition to being a versatile hairstylist also used to work as a childcare provider and nanny, give it a trim.  Whitney did a spectacular job and Hallie really enjoyed the experience.  We were a bit concerned about how she might react to the snipping in the absence of Elmo and company on a DVD player, but Hallie was great.  She enjoyed making faces at herself in the mirror, sat still for the entire experience, and was not at all put off by the comb and scissors.  In our estimation, the results of this haircut are spectacular and Hallie looks like a pretty little French girl.  As it turns out, her hair is not entirely straight but contains some very fetching little curls and waves.  Here's a closeup of Hallie's face during the school bus ride--which she thoroughly enjoyed since she associated it with one of her favorite songs, which she insisted on singing the entire time--to her cousin Sarah's crew meet last weekend:

 

Now if we could only get our Sensory Kid to stop smearing stuff in her hair, we'd be in a really great place where coiffing is concerned!

But the smearing has an upside, I suppose:  Hallie has been trying lots of new foods lately and a lot of them end up in her mouth and not just her hair.  She is very fond of watermelon, appears to have a passion for Rita's mango water ice, has been very into eating raisins, and has tried cantaloupe (jury is still out on whether she likes it, but she's definitely interested in gnawing on it).  She's been willing to put chunks of raw zucchini in her mouth.  And, drum roll please, she ate a third of a piece of regular (cow milk cheese) pizza last Monday after gym class without any prompting or bribery.  She just picked it up and ate it.  She did insist on eating it upside down (cheese and sauce on the bottom, crusty bread on the top) and this made things a bit messier than average, but we're not going to be sticklers for detail.  What we did notice, almost immediately (and it was Nadia who pointed this out to me, so it's not even my paranoia peeking through) is that Hallie began to sound very snarfly and stuffy and she clearly had some reflux after eating the pizza but the important thing is that she kept it down.  This suggests to me that she is still sensitive to cow's milk and that we need to proceed with caution, but that a little bit isn't going to set off the major episodes of vomiting and reflux that we used to see around here.  I'm beginning to wonder, too, whether something like Lactaid wouldn't help her.  Perhaps it's an issue of a missing digestive enzyme (which seems to be the case for beef with Hallie).  I know that Lactaid makes milk, cheese, and also pills that adults can take, but I am not sure whether they, or anyone else, makes lactase in a form appropriate for a small child who cannot swallow pills.  If anyone has any leads, please let me know.

So the eating is going pretty well around here.  Hallie is trying new stuff all the time and is eating a wider variety of food (she had a few bites of bialy the other day and really liked it; is willing to tolerate chunks of chicken nuggets dipped in catsup, of which she is quite fond; and adores creamy goat cheese spread on toast--which has to be brown and which she'd prefer to use only as a vehicle for transporting goat cheese to her mouth but not necessarily as a food worth ingesting in its own right; likewise, she loves the tomato sauce on pasta but is fairly indifferent to the noodles in their own right).  Just as importantly, she has not been vomiting.  At all.  I am sure that I will be jinxing myself at this stage, but it's been fourteen straight days now and she has not upchucked.  I do believe this is our record.  And we stand at 89 days of no vomiting this year, so things are looking really good.

Because of this, we decided to pull the Reglan altogether from her list of medicines.  Reglan has some scary immediate and cumulative neurological side effects and, while we believe it was a very important drug that helped her at some critical points, what we're seeing now indicates that she's no longer in need of it.  She does not appear to have delayed gastric emptying at this point and, to the extent that she does, prunes and water (she loves water, which of course makes sense since it has no calories) are doing the trick.  On top of this, we've cut her dose of Axid down to once a day.  We're keeping the prilosec for now, but down the road may consider weaning her off of this too.

Hallie still has good and bad eating days, but we do notice that, over time, she does fine.  Some days she might drink as little as six ounces of her super-charged goat milk and other days as much as 18 ounces.  She stays hydrated, though, because she drinks a fair bit of water and juice (not to mentioned swigs of diet coke that she steals from me and once or twice a gulp of coffee--not that these are particularly hydrating and heaven knows that the last thing she needs is caffeine).  

Our biggest concern now is getting her to eat like other kids.  We don't mean that she needs a broader variety of food--honestly, the fact that she eats about 20 things and is willing to try stuff at her own rate is fine by us.  What we mean is that we would like to get rid of the high chair, the TV/DVD player, and the prompting/reward system while still managing to get enough calories into our kid to keep her growing.  We are not sure how to proceed with this, so if anyone has any clues, PLEASE let us know.  Every time we try to feed her at the table with us and have a family meal (even if there are other kids here to keep her company), it never goes particularly well.  She might take a bite or two but that's it, and usually a meltdown ensues.

We are hoping that preschool helps teach her a thing or two about how kids eat (and enhances her general social skills), but how that all plays out remains to be seen.  The IEP is next week and that, and Hallie's assessment, warrant a separate post (yeah, I know I say that a lot, but this time I really mean it).  Meanwhile, I leave you with some cute shots of Hallie taken at Sesame Place three or so weeks back:

 

Just Chillin' in her Stroller

 

Sliding was lots of fun but Hallie had the best time cavorting on the gym mats (and pulling her mama into the fray)

 

 

 

And here she is hugging Zoe:

 

As it turns out, she's in a Zoe phase (I am guessing that many little girls go through one). She especially likes imitating Zoe performing ballet. She'll place both hands over her head, pirouette-style, and lift one leg. This is cool, because I had no idea that she was able to stand on one leg even for a brief few seconds (this is one of the things that you are supposed to do by age 3; there are many many things that you are supposed to do by age 3 that Hallie cannot do, so it's nice to see that she can do one). So, between dancing like Zoe, galloping around the house with a cowboy hat on, saying "I ride horsie! NAY!" and marching like Barney the purple dinosaur (one of Hallie's longest sentences is "Barney purple dinosaur is MARCHING!"), I do think we have a bunch of emerging pretend play skills (one of those milestones-not-quite-met), which makes us very happy. So if she needs to be Zoe and Barney, that's fine by us! Now if we could only break her of some of her TV watching, we'd be even happier!