Speech, Speech!

Wednesdays are speech therapy days around here:  Hallie has a half an hour of private speech (and an hour of private OT) in the morning and then an hour of speech at school (which runs coterminous with the Social Skills Inclusion Program that she attends there) late in the afternoon.

While that's a lot for a kid to do in one day (it amounts to 3 hours of therapy, broken up by lunch and playtime), Hallie approaches therapy as if it were play (we used to tell her that we were going off to play with so-and-so but Hallie knew better and started calling it therapy, so now we do, too).  As long as the therapist is a good fit for her*, Hallie works really hard in therapy and likes to please whomever she is working with. 

(*One should not underestimate the importance of a good working rapport between a child and his or her therapists.  There are many therapists and teachers out there who should not be working with kids, or at least not with Hallie.  We usually give them a few weeks to a few months and if they still deem Hallie to be a difficult child or try violate her trust, we fire/replace them.  Likewise, if Hallie has been working with someone and makes no progress in a three month period, we discontinue therapy and look elsewhere.  In such cases, the therapist may be well-versed in whatever it is that s/he does, but it simply is not something that works for Hallie.  The best therapists we've had have looked at Hallie as an individual and figured out what turns her on and then uses this as an avenue for helping her learn to do something that is hard for her to do on her own).

Anyway, I digress.  Back to yesterday.  E. came out of the session with Hallie a few minutes early so that she could talk to me about Hallie's recent progress.  Lately, Hallie has really made great strides in dealing with the problems that she had been having with pronoun genders (she used to mix up 'he' and 'she' and 'him' and 'her' lately; now she gets these right about 80% of the time); with sequencing (being able to organize cards logically so that they show the evolution of a simple narrative sequence); and with describing objects in more robust terms.  She is also doing a bit better in terms of answering "what" questions and in beginning to discuss simple subjects in a free-form way (things like her family, what she did that day, etc.). 

All of this is very good.  The only problem is that this may in fact disqualify her from receiving speech therapy paid for by our insurance.   While, even in terms of these aforementioned exercises (and even more glaringly in real life, a topic to which I shall return in a bit) Hallie is still quite clearly behind most of her peers, she is not necessarily sufficiently behind them to receive therapy.  Apparently the range of 'normal' speech is still quite broad at age 4.5 and one has to be quite a bit behind the lowest level of what is deemed normal to qualify for services.   This is something we're going to have to test (quite literally):  there are a lot of very different assessment tools out there and some of them do a better job than others of evaluating preschool speech.

You might ask me why am I not more excited that Hallie is on the verge of placing out of private speech services?  I think this is a fair question, but it has a pretty complicated answer.  First off, let me state that I am nothing short of thrilled that Hallie has been making so much progress.   She is a hard little worker and she is cognitively quite bright.  She can follow directions pretty well (even for a kid who quite obviously has problems with attention and focus and eye contact and stuff like that) and learns things very, very quickly.  I think all of this will serve her extremely well.  She also generalizes well (though this sometimes can be a problem.  More on this later, too).

But all of that being acknowledged and celebrated, there are some problems with Hallie's speech.  Most of them have to do with pragmatics.  I blogged about this before (and sadly will probably do so again). The issue is that none of the assessment tools (and none of the insurance agencies and educational institutions that rely on these assessment tools for evaluating and treating speech disorders) account for problems with pragmatic speech.  She still had a very difficult time extending communication beyond a formulaic social greeting (she easily says "Hi So-and-So" but has no idea where to go from there) and cannot easily initiate, let alone sustain a conversation beyond one to two very basic turns.  So, for example, she might say to a peer who has a crayon that is the same color as the one with which Hallie is drawing, "Look, we match crayons!" (she loves doing this because she is extremely enamored of matching and categorizing concrete objects).  But beyond, perhaps, saying something like "we both have black ones," the conversation goes nowhere.  This does not become an avenue, perhaps, for discussing even the fact that they are both drawing pictures of dragons with their black crayons, let alone a more abstract and less concrete discussion about their lives.  So no using this conversational turn as an opening for talking about how they both went to parties and had fun in the bouncy house or got new toys from Santa or ate too many cookies or watched a new princess movie or whatever it is that typically developing four and a half year old little girls go on and on about.  Rather, Hallie will note that the crayons match and move on (as in, retreat into herself) from there.

Can Hallie put together a four or five or seven word sentence?  Sure.  Can she use more than two adjectives in that sentence when prompted (turning that black crayon into a big, fat, black crayon)?  Sure.  Can she tell you that so-and-so also has a black crayon and that that makes two black crayons?  You betcha.  But can she sustain any sort of conversation with her peers?  No way.  She might, under duress and extreme prompting, sustain two or three turns with us or a therapist (and in our world this usually involves redirecting her attention at least twice and asking us to look at us in the eyes numerous times).  But this does not make age appropriate speech.


Conversations are always easier (if the above seems easy to you) when they relate to concrete things (like matching crayons, or toys, or clothing) rather than abstractions.  It is enormously hard for Hallie to discuss her feelings (I actually think that it's really hard for her to feel her feelings), especially when these feelings are complicated.  So, she might be able to say that she feels sick and even tell us where (her tummy hurts), but this is pretty concrete.  She cannot tell us that she felt sad or mad or angry when another kid took her toy (though she can act out that anger, at least when it is directed at Lea).  Rather, even when she is the victim of a Lea toy snatch, and even if she is actively engaged in attempting to grab back that toy (and/or pummel Lea), when we attempt to turn such (frequent) events into a teachable moment and ask her, "Hallie, how does it make you feel when Lea takes your toy?" Hallie will respond, "I feel HAPPY!"  She is so very clearly not happy, but we think that she cannot own the feelings of anger and sadness.  First, she has been taught the formulaic phrase "I feel HAPPY!" in much the same way as her first (and not terribly good, and certainly not understanding of Hallie's differences) Early Intervention speech therapist taught her the phrase, "I want please Mommy X" which then got used in lieu of all other spontaneous speech utterances for about six months.  So the only feeling she can name is HAPPY, even if she can feel a much broader range of emotions.  Second, it's really hard to voice anger and sadness when you live in Hallie's world, which is one in which she is so anxious to please everyone.  She is apparently afraid of letting us down.  There may be even more to this inability to voice emotions, but that's my thinking about it for now.

Other sorts of abstract utterances, such as describing what she did today or talking about the weather, the seasons, what is going on at school etc---anything which relates to discussing that which is not in the lived moment---are likewise very very difficult for Hallie.  This situation is beginning to improve a bit so now we might actually learn something about her day from her (but we always need to corroborate this with an outside source who might be able to inform us whether they really did read a particular story, play a particular game etc).  But this skill is slow to emerge.

Even slower to emerge (read: non existent) are complicated "Wh" questions.  Hallie has one question that she asks, which is "What is" that?  She will ask this about things and about people (she modifies the latter a bit and inquires, "What is that named?")  But everything is a what.  There are no "who"s, "where's, "when"s, and most certainly no "why"s.  Hallie asked us "why" once, eleven months ago, and has never uttered the word since then.  We are constantly setting up why questions for her, and also asking her to answer our "why"s.  Hallie has learned (because she is good at generalizing formulae) that one answers a "why" question by beginning her retort with the word "because."  So she does that quite consistently.  The only problem is that her "because" clauses often bear little to no relationship to the questions themselves.  So, for example, you might ask Hallie "Why didn't you eat your toast?" and she might respond "Because it makes you so happy!"  (again with that happiness formula).  Causality eludes Hallie.  Curiosity does not:  Hallie is curious about the relationships between things and loves to read and wants to know what is going on in the world.  It's just that the sorts of relationships she sees between things may very well be different than the ones that we typically focus upon.  I don't quite have a better way of understanding, let alone conveying, this phenomenon.

So the question remains:  can this stuff be taught?  I do think that the social niceties can be taught and that, as Hallie matures and fills in the developmental blanks (which she is doing quite well with the help of Floortime/DIR and her social skills training and just plain maturity, because let's not forget that Hallie does have delays on top of her disorders) that it is likely that she will make further progress on these harder-to-assess fronts, too.  I just don't know what the timetable might be, let alone the route this progress will take.  I do know one thing though:  it will take a lot of hard work, drilling, and the involvement of very good, very attuned-to-Hallie professionals to teach her the things that she needs to know.  This is where our Developmental Pediatrician is spot-on:  Hallie is very bright and is of above average intelligence and learns quickly.  However, the nature of her particular disorder is that she will need to be taught many of the things that typically developing children pick up on their own.  This is why we need to try our best to keep receiving good speech services for Hallie.  We are very involved parents, and certainly we can (and do) read up on how to help Hallie and we apply the lessons we learn from Hallie's various therapists at home so that she gets far more than the seventeen hours of formal therapy she receives outside of the home.  But while we are part of a therapeutic team, we are not therapists ourselves.

One final speech concern:  lately, Hallie has been attempting more spontaneous speech at home.  This is wonderful.  It often involves trying to tell us about stuff that is important to her and, even though we parents aren't all that interested in the TV characters of whom she is enamored, we are always eager to hear what Hallie has to say.  The only problem is this:  the less scripted, the less formulaic, and the longer these speech utterances are, the more likely Hallie is to stammer/stutter in her attempt to get the words out.  She'll often get caught on the first few words of her longer (say seven to ten or so word) sentence and repeat the opening phrase two or three times before the rest jumps out.  Her articulation is very clear, but the words get stuck.  Maybe it's an executive planning issue.  Maybe it's an anxiety issue.  And maybe it's simply a developmental stage.  Whatever it is, I am careful not to finish her sentences or make a big (or even little) deal of it.  Coincidentally, I heard a very interesting show on Marty Moss-Coane's Radio Times (a locally produced, very good NPR news show) titled, "Struggling to Speak," that relates to stuttering and the new Colin Firth/Geoffrey Rush film, The King's English.  Marty had on the film's screenwriter (David Seidler) a well-known local chef, Marc Vetri, who is a lifelong stutterer, and the head of the stuttering program at CHOP.  This provided a lot of food for thought, so to speak, and also another resource to check out if Hallie's stutter gets worse or causes her further anxiety.

Speaking about CHOP and anxiety, all of us have a bit more of this than usual:  on Monday, we'll be heading over to outpatient surgery at CHOP for Hallie's first, temporary vocal cord bulking.  We are all eager to hear what Hallie's voice might be like with a bit of augmentation.  But putting her under always gives us pause.  Not to mention that, as she gets older, Hallie becomes more aware of her medical issues and more concerned about going to the doctor.  She is convinced that Doctor Karen has already fixed her voice (apparently two visits to the Voice Clinic at CHOP were quite enough for Hallie).  So getting her in for a third treatment (this one far more uncomfortable than the first two, which involved having her make noises and get weighed) will not be fun.  Even less fun:  this particular trial substance lasts perhaps three months or so.  So if it does work (and we hope it does), we'll be back for more come the summer.  Prematurity:  the gift that keeps giving!

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.

The Preschool Post

Well, it's taken me long enough to get around to writing this thing, and, for once, it's not entirely because I have my hands full with two kids, household duties, medical appointment and therapy arrangement, and the like. This post is a long time in the making because I haven't quite known what to say about Hallie's first school experience.

When parents of typically-developing children write about sending their oldest young one off to his or her first day of school, the post is often full of some fear and anxiety (often shared equally by child and parent alike) but also a sense of wonderment and awe about a fabulous journey that is about to begin: the child is setting down the blocks that will lead to an increasing sense of autonomy and independence from caregivers that will ultimately lead to him or her carving out a personal path. It's the first of many school milestones and, after the initial tears and fears abate, all generally come to see it as something to be celebrated.

When you are parenting a special needs child, things are a bit different. While it is clear that preschool is a place where Hallie is free of us, the terms on which she is in preschool--with a one-on-one aide and visited by OT, Speech, a Special Instructor, and, theoretically (so far) PT--underscore that Hallie is nowhere near the point where she can function independently in the world. We hope that, some day, Hallie will be able to be autonomous--both in school and out of it---but we cannot really afford to dream about this at this point. We just need to get through this experience, which, for our kid, has its own special contours and rhythms.

First the prequel: the testing that confirms that your young one is globally delayed; the fights with the agencies to secure a placement that you believe appropriate and the services that your child needs; and then the mounting fear awaiting that very first day. You try to explain to your child what life has in store for her, in as simple terms as possible. But this is very hard to do when your child is largely non-verbal and it's never quite clear what she understands. We've never really left Hallie anywhere before--I went to gym class with her, and we've always had a nanny and Hallie's never been in daycare. We have no way to tell whether she has a notion of time, per se. She certainly knows the rhythm of the day: mommy gets up and showers and takes her cycle to work (Hallie can recount all of this if prodded), but telling her that she is going to be going to school for six hours some days and two hours other days and that mama would pick her up at the end was something so outside of her routine that we are fairly certain that she had no idea of what we were talking about. We could use Caillou--one of her favorite shows--as a reference point and began to tell her that she was going to go to playschool and would have teachers just like Ms. Martin (Caillou's teacher) but that was TV and what we were discussing was real life. Since Hallie has never really played with other children (she would get together occasionally with her cousins or neighbors or children of our friends for play dates but her communication with these children was minimal and verbal peers soon tire of her since she cannot interact with them effectively), the lure of spending all day with other children was, to say the least minimal.

Anyway, the big day arrived and, somehow, we got Hallie up and fed on time to depart for school at about 8:45am. We took the ubiquitous first-day pictures of our little girl with her new backpack (sadly, none involved a smile since Hallie does not consistently pose for pictures yet) and all of us--Sharon, Hallie, Lea, Nadia, and I--bundled into our car and headed off to preschool:

Hallie mounted the stairs holding our hands and sat right down on the floor alongside the other children.

We lugged in our tub of diapers/pull ups, wipes, changes of clothing, and special snacks in the event that she could not or would not eat the snacks provided by the school, gave them to the teachers and inquired about Hallie's aide. One of the stipulations of the typically-developing school that she attends is that Hallie be accompanied by a one-on-one Personal Care Assistant (PCA) who will help her with eating and toileting needs (we have fantasies about her being potty trained someday), and who will redirect her when she gets off focus and help facilitate her communication with the other children. (The PCA is not quite as trained or skilled as a TSS (Therapeutic Support Staff) person, for whom Hallie does not qualify since, at least right now, she's not on the Autism Spectrum.)

Anyway, we asked about her PCA and found out that no one had shown up at the school yet to take care of Hallie. Oops.

Fortunately, the school's director was willing to allow us to send Nadia to school with Hallie instead so that Hallie would not miss her very first day. I went home and spent the next couple of hours taking care of Lea while simultaneously hunting down anyone at the LEA who might be able to locate Hallie's PCA. My first four phone calls were none too successful. It was, after all, the day after July 4th weekend, and most of Elwyn's staff was still on vacation. Happily, a single call to the oversight agency in Harrisburg yielded success. I finally spoke to a real live person at Elwyn who said that she was going to track down the PCA. By this time it was 10:45am. Finally, some time around 11:30, the PCA showed up, claiming that she had been at the school at 9am but couldn't find any children or teachers. Now, it is true that the school meets on the grounds of a church (Old Swedes Church (Gloria Dei), the oldest church in Pennsylvania; it had been established in 1677) but the grounds are just not that big. Moreover, at around 9am there was a huge brigade of strollers and parents with preschoolers who were dropping off their kids at camp. And about an hour later, all the kids were in the play yard outside the school building engaged in water activities. It would have been hard to miss, unless, of course, the PCA was just plain and simple missing.

This was an omen of things to come.

Anyway, at around 11:30, the PCA shows up, and after an orientation of sorts with Nadia (I am pretty sure that the PCA did not read through the five page Hallie Care Manual that I produced), Nadia came home to report on how things were going, so far, that very first day. There were no tears, but that was to be expected, since Nadia had been with Hallie the entire time. Hallie loved music and loved playing in the water tables/wading pools, but lunch had been its usual bad event, and most of the OT's session with Hallie had been spent coaxing her to eat a few bites of cheese, a couple of chips, and some raisins. The PCA was OK--very young, and totally uninitiated when it came to dealing with special needs kids Hallie's age, but generally nice. However, as Nadia pointed out to me and as future direct interactions confirmed, the PCA was undereducated and semi-literate. I wasn't too worried about this, since, in the larger scheme of things, we're less worried about Hallie learning to read and count than we are about anything else (she is already pre-reading, knows her alphabet, shapes, colors, can count to 30 etc). We just needed someone nice, kind, able to help facilitate Hallie's socialization with peers (Hallie's weakest point, in our estimation), and responsible.

Responsible the PCA was not.

She showed up late on Wednesday and did not show up at all on Friday (after some more phone calls, it turns out that she didn't show up because she was watching her best friends children after the best friend failed to pick them up). The school called at 11am, since Hallie was having a meltdown and was in need of redirection at precisely the same moment when all the other kids needed help changing out of their bathing suits into dry clothing and lining up for their next activity and there was no one available to undertake the arduous process of getting lunch into Hallie. We needed to pick her up as soon as possible. And from here on in, if the aide was not on site, I was not to leave the premises and would have to take Hallie home with me if the PCA failed to show up by a half an hour into the preschool day.

Fortunately, Sharon had taken off the day since we were headed to New York right after preschool and was able to pick up Hallie and cart her off to do some errands while I watched Lea and packed our stuff. When Sharon got to school, Hallie was sitting apart from the other kids on a chair next to one of the teachers and eating one of the few foods (Krinkle Sticks) that she will reliably eat on her own. When she saw Sharon, she burst into tears.

This was not going so well.

I left Hallie in tears for the whole next two weeks (week two and three of school). Every single day, the PCA reported to me that Hallie loved her music session but that she would have nothing to do with the other children. The other kids--at least some of them--expressed interest in playing with Hallie but Hallie would just walk away when this happened. We were beginning to feel like we were losing grasp of our little girl, who was retreating more and more into her world of repetitively-played-with-in-a-routine-sort-of-way toys and her television land characters. We began to investigate social skills classes, made a follow-up appointment with the developmental pediatrician and requested a parents-only session with Hallie's Floortime/DIR psychologist to see if there was anything more or else we could do to integrate Hallie into the wider world.

The PCA swore up and down that she would be reliable from here on in, but showed up late two more times over the next two weeks. And then, a week ago Monday (Hallie's fourth week of preschool), she texted me at 7:15am informing me that she would not be there that day since she needed to get a tooth pulled. At 8:01am, I was on the phone with Hallie's Elwyn Service Coordinator (who had arrived a minute earlier) looking for a new PCA. It was the best move I could have made.

We sent Hallie off with Nadia that day while the agency hunted down a new PCA. By 10:00am they had located a new aide and by 11:30am, she was at the school. And, this time, I think we have a winner.

The new PCA has both professional and personal experience working with special needs kids and kids on the spectrum. Her 8 year old has autism and so she is well versed in sensory issues (she asked Nadia whether we do brushing--we don't--or joint compression and deep pressure--we do; she noticed Hallie's penchant for repetitive play and toy lining up and told me that she was going to work on disrupting this sort of activity and instead help Hallie move along from play area to play area so that she would experience different aspects of play and work with her on functional play skills). She is eager to facilitate Hallie's interaction with her peers. During Hallie's first three weeks, she had nothing to do with the other kids at school; in contrast, she has begun to play with, cheer on, and high five with the other kids this past week. She even walked up to one of the other children (a very popular boy, from what Hallie's teachers said) and gave him a great big hug when we arrived at school one afternoon last week.

Hallie is still most comfortable during music time (she calls out requests for animals during her favorite song, Old MacDonald Had a Farm, and dances and sings like a pro) and when her Special Instructor, Ms. Anne, is visiting) but, in general, she is a happier kid. She still has a hard time with story time (we are not sure whether she is not following the narrative because she doesn't understand it or whether her auditory processing and other sensory issues are getting in the way) and meal time is still challenging (though better than it was with the first PCA). She is still grappling with sitting on the big girl potty at school (we are sending in a potty ring for her so that she can feel comfortable trying to go to the potty and will take off a few days after school/camp ends for the summer and before the real preschool session begins in September to try and potty train Hallie). But all in all, things have been much better with the new PCA than with the old one. Not only does she show up before she needs to be there but she also sends notes home so that we can find out what Hallie did that day. That has allowed us to have more 'conversations' with Hallie at the dinner table concerning the events of the day. Sometimes Hallie really does tell us new stuff (that we can often check against these notes) and has even begun to name some of her friends at school.

Anyway, just as things really began to stabilize at school and Hallie began to seem happy about attending it (rather than a rote statement at night about "fun preschool" , she actually did seem to be having fun), Elwyn (the 3-5 EI agency) took off one of its random weeks. The way things work around here is that there are three calenders for special ed students: the first, for the highest functioning, doesn't provide for an extended school year at all and, rather, takes off from mid June through early September. The second, for the middle group, does provide summer services, but with breaks here and there. The third, for the least well functioning kids, provides services year round and with no days off. Hallie is in the middle group. We hope that she does not get so out of the routine by Monday as to force us to restart the adjustment period all over again. There are only two more weeks of camp/preschool until the late summer break and it would be a shame to have to do this.

In closing, here are a few pictures of Hallie at school during her initial two weeks. The nice thing about the school is that the teachers take pictures and post them to their website. We don't have any of Hallie at her very best, but, with the exception of the snack time shot, she doesn't seem miserable at school, either. I am hoping that over the course of the next year, Hallie does begin to make a set of real friends with whom she feels comfortable interacting. She is talking at home a lot more than she used to (we are hearing a lot of spontaneous sentences that are meaningful--the other night, she even said to Sharon, who was tickling her tummy "that tickles me!") and hopefully she will feel confident enough to use her voice at preschool and interact more with the other kids. And hopefully the kids--who seem like a particularly nice bunch--will realize what a funny, silly, and smart little girl Hallie is.

Milestones, Measurements, Meanderings

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

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

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

 

Here's a close-up:

 

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

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

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

 

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

 

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

 

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

 

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

Transition Plans, Preschools, Advocacy..Oh My!

The kids are relatively quiet and peaceful and I have a rare daytime moment, so here's the third part of the update that I promised.

In addition to everything else we've been juggling (and contrary to accepted math, 2 kids DO outnumber 2 parents), we've been trying to negotiate the preschool transition for Hallie. What this amounts to, at this stage, is figuring out the extent of the misinformation and outright lies the representative of the agency handling the Philadelphia County Intermediate Unit has imparted to us; what we are entitled to receive by law; and how to do the best thing for our kiddo.

Here's a bullet point list of the lies we've heard so far:

1. You are not allowed to see the preschools/Head Start programs before your daughter is placed in them. This lie was oft repeated to us by the now-replaced Service Coordinator, even when we called her on this. Her supervisor's response: well, parents don't usually want to see the schools so she probably never dealt with a situation like this before. WTF!! This is a service coordinator who ostensibly has in excess of 20 years of experience. I do not for one minute believe that no parent ever asked to see a school before, particularly in the area in which we live (and which she apparently services), which is populated by many well-educated and professional people (not in any way is this a prerequisite for parents who, by nature, I think, want the best and safest educational system for their kids).

2. You are on your own where it comes to medication and dealing with your child's chronic medical conditions. The Intermediate Unit (3-5) only provides for the child's educational needs and goals. Not true at all! There is something out there called Chapter 15 and the school system must include a Section 504 plan for dealing with a child's medical needs that get in the way of education. Here is a link to a very good publication on the issue. Moreover, the education system must do this at no cost to the parent. They cannot even just tell us to contact our insurance or Medical Assistance to get this done. In fact, it needs to be written into the IEP (Individualized Education Plan) so that, if the child loses insurance or Medical Assistance, it needs to be provided at the cost to the school system, and not the parents. So telling us that we needed to find someone to run meds over to wherever Hallie is placed and/or not educate her at times she needs meds (what would this be? when she's sleeping? Seriously. She takes prilosec and zyrtec an hour before breakfast and reglan a half hour later; she takes reglan and axid before lunch; she takes prilosec at about four to five pm. She gets albuterol when she's sick as frequently as every four hours and as a rescue med if she has an asthmatic incident).

Even more interesting is that I just had a conversation with one of the advocacy folks with whom I've been in touch (It's now been quite a few days after beginning this post...I'm finally getting back to it on March 10th. Life really is taking a toll on my blogging!). The very nice parent advocate informed me that the agency handling IU here in Philly does, with prodding, provide 'shadows' and that the law requires them to do so since, by law, the IDE MUST address each child's unique needs in a way that provides him or her with fair and accessible and equal educational opportunities that will allow him or her to contribute productively to society by the end of the educational process. Makes sense to me, and no big surprise that the folks at the IU coordinating agency lied about this one, too. So now there's something else for us to push for...

3. We are not responsible for testing her for PDD-NOS or any other spectrum disorder. We only have a part time psychologist and s/he is very busy. Lie. Total lie. If we request this, psychological assessment must, by law, be done. Period. They cannot even demand a doctor's note for this.

4. Hallie turns 3 in June. Head Starts begin in September. We'll make up her services then since she's no longer qualified for the Birth to Three program once she turns 3. Lie. Not that they won't try to weasel their way out of providing extended services.

Anyway, you can see why I have about zero level of confidence in the agency that handles (mishandles?) Intermediate Unit services in Philly. So, first we got reassigned to a different service person. Of course, the service person aims at providing no services. Apparently, they handle transition, place the kid in a program convenient to them (and not necessarily best for the kid) and then the parent needs to live with whatever the placement is, or go to dispute resolution. Not a good system.

The sum total of the work this new person has done for us is: 1. send us a xerox of outdated numbers to call for different school/head start programs so that we can visit them on our own (no one has called us back yet from the several I called last week. Maybe I'll just show up). 2. get us evaluation dates for the testing and the psychological testing (which miraculously became available to us when I quoted the law to her). I expect that, unless we mediate, I won't actually meet this person.

Anyway, needless to say, this has been an enormously frustrating experience already, and Hallie has yet to turn three. And it's eaten up hours and hours of our time. I've been on the phone with one or another advocacy group numerous times; have spent considerable energy on perusing the laws concerning Special Education and disability rights here in Pennsylvania; and have been calling around to different preschools. The Head Start brochure listing the name of the administrator who handles special needs kids at various centers has proven utterly useless and no one has called us back from the central coordinating office (if there is even one; all we have are numbers). We did make appointments to tour three preschools on our own: the first is a year-round reverse inclusion program that is where kids with more serious IEPs get assigned. The second is a daycare/preschool facility that is mostly for government workers that is located a block from Sharon's office that takes a couple of Head Start or Special Needs kids each year; and the third is a private preschool that we would end up paying for out of pocket.

The first seemed utterly inappropriate to us in terms as a place for Hallie. First, in terms of security--there was none of which to speak. We rang the bell, and instead of asking us to identify ourselves via intercom, the person in the office just buzzed us right in. There was a sign that read "Please sign in at Main Office" but no safeguards (like a security person, even) to ensure that one did so. We could have wandered around for a while before being noticed.

Second, all of the therapies are done in groups and in the classroom. When I inquired what the protocol was when a speech therapist was in a classroom with one student who was apraxic, another who had feeding issues, a third who stuttered and a fourth who dropped endings, I was told that they would all be handled at the same time as a group. This was not an answer that made me confident that Hallie would receive the services that would actually work for her. Then we asked about feeding support. The teacher told us that the teacher and her aide (the ratio is 1 to 10, with only the teacher having any educational degree that would suggest that they should be running a classroom) would provide some hand over hand meal support. Just then a little boy ran up and said "Miss B., I'm hungry!" It was about 11:15 at that point and Miss B. asked him if he had eaten breakfast (which is provided at the school). He said "no" and she told him to wait until lunch. OK--so I have several problems with this: if the teachers are providing support, would they not know that he had not eaten? Where were they when he was not eating his food? Also, what would one do with a child like Hallie who simply would not eat on her own and who doesn't know how to say she is hungry, if she even feels hunger (which we are not sure that she does. Certainly the several days in a row this past week when her total intake could not have exceeded 500 to 600 calories do not lead me to believe that she feels hunger. Since there is no pull out therapy, one could reasonably expect our kid to not eat breakfast and lunch on the days that she is in preschool were we to accept this as a placement (which we will not).

Third, the entire setup of the place transmitted a sense of barely controlled chaos. There was no productive learning going on in any formal sense of the word in any of the eight classrooms that we visited. We were assured that there was a formal group time when children first arrive, but given that the schedule is staggered (to allow children to go out to play at different points during the day), it is odd that in not a single instance did we see story time, an art session, music, etc. Instead, the kids were in various clumps scattered throughout the rooms, some in therapy in groups and others hovered around blocks or computers or the like. The teachers were fielding questions from kids and not participating in play with them. And in the case of the kids in the playground, we witnessed three or four young boys pummeling another in the corner of the yard while the teacher (the only one who was seemingly supervising this play) was standing half a yard away staring into space. We have no idea if the pummeling was playful wrestling or playground bullying but, as a parent, I'd want a teacher to suss out that situation and not just fail to notice it.

So it was good to visit this place since it's important to rule things out and move on. And so we did. The second school was the absolute inverse of the first. Security was fabulous (it is, after all, located in a Federal Building) and the teachers were not only clearly engaged with the kids but actively involved in teaching them stuff. Order reigned supreme at every juncture: kids coming in from outdoor play wash their hands (and stand in line to do so); children don smocks and sit at little tables and await their lunch (and I bet you they don't tolerate food throwing and other skills at which Hallie now excels). Meals are all provided and children must eat the meal of the day, with reasonable substitutions made for medical conditions (like allergies). There is a lending library of books and all of the toys are new and clean. So what's the problem with this place? First, Hallie really would need an aide since eating and toileting would be an issue here. The program is a five day a week, six hour a day program and she could not handle this on her own. And second, getting in. The waiting list can last about two years for typically developing kids whose parents don't work for the US government. I have no idea how long it is for special needs kids and whether there is a way in that circumvents this wait. We're going to try to find out, though, since this would be a great program for her when she is four. She needs structure and actually thrives on it once she is taught what to do and how to do it. (For example, her purple dinosaur teacher, Barney, has taught her to clean up her blocks, which she now does fairly regularly).

Our third visit last week was to a local arts- and music-oriented preschool program that just introduced a transitional, afternoon program for kids who are beginning the move to the preschool level. The program places an emphasis on social communication, which is one area where Hallie really needs work. And the school has an explicit mission statement of inclusiveness of children with special needs. The school is quite close by (about seven blocks away), which is an added bonus. The director knows A LOT about special needs kids and about preschool education in general, which gives us a great deal of confidence. She did, however, insist that Hallie have a one-on-one shadow to assist her in the preschool context, and we agree that this would be a good thing. Hallie does not have the easiest time with transitions (she has awful, meltdown-level, sometimes vomit inducing separation anxiety fits) and she lacks the capacity to comfort herself. She also cannot really take care of her own needs, and often is not even able to express these needs. When she attempts speech, it's often quite hard to understand her (she may be about 30-50% intelligible to others and about 50-70% to us) and she gets very frustrated when we cannot figure out what she is saying. So, an aide who can help facilitate transitions, communication, self care (like feeding and helping toilet train, should we ever get to that stage in preschool) and especially someone who knows ASL would be great. Now we just have to get one approved by insurance or Elwyn and we're set to go. They'll take Hallie into the program whenever this happens. We hope it's when and not if.

So where do we stand now? We will continue to explore the Head Start/Learning Tree programs that are well-rated and nearby (we're not particularly interested in bussing Hallie across Philadelphia, but this is a moot point because only the reverse inclusion and all special needs oriented programs provide transportation). But in the meantime we are going to make sure that we have a parent advocate in place at the IEP and that they review anything that Elwyn produces, paperwork wise to make sure that Elwyn is not in violation of the law. If we need to hire an attorney or go to due process or mediation, we will. And we'll make sure that we know what Hallie's rights are and that they are respected. By law, the county must provide our daughter with a free and appropriate public education that meets her unique special needs and if they cannot do this, they will have to make sure that they pay for private programs/personnel that can accomplish these goals.

Getting our Act Together

Well, things are in full-throttle organizational mode around here. Which, of course, translates into stuff exploding everywhere and covering every available surface as I sort through, categorize, discard, and organize things. The kids' clothes are completely in order (probably for the first and last time ever; I was a bit appalled at how much 2T-3T stuff we have). I have begun to tackle the crib issue and can now see the mattress at least. The pack-and-play, sadly, remains jam packed with junk and will be a total nightmare to clear out, so I'm avoiding this task for now.

I am also the proud owner of a million plastic bins from Target. Alas, some of them are too big for the space at the top of the closet and four of them are cracked. I had to scale the shelves to pull down. There was not a sales associate anywhere remotely near the rubbermaid aisle so I grabbed one of those snow-ball maker and thrower gizmos that no one ever buys and swatted at them until I could reach them from the shelf upon which I was perched. I was so relieved that I managed to get a hold of the lip of the stack of seven containers I wanted without toppling them on myself that I never did check them for cracks. So now I have to go back to Target to return these and get some others. I hate doing things twice.

Anyway, the big news on the Great Expectation is that Sharon was 1 cm dilated and 50% effaced at her weekly Wednesday check. We're not sure what this means but things have begun to get underway. There's still a bit of time to vote on due dates and size (or re-vote!).

Other news: Hallie has weathered her cold really well and seems nearly completely recovered. Oddly enough she has not had a major upsurge in vomiting with this cold and we are grateful for this. So her total vomit free days of the year stand at 12. Yes, 12 out of 14. Super. And she is otherwise doing nicely with eating new textures: graham crackers, her beloved Lays potato chips, and a few wheat thins here and there. She even tried a bit of toasted frozen waffle and seemed okay with it. I don't think she thought it had sufficient taste, though, so we might try maple syrup, although I suspect salt might be more to her liking. Anyway, all of this represents major progress.

We met with her new EI feeding therapist this Monday and we REALLY like her. She is neurotic (a virtue to others of us who are also neurotic) and very certain that medical stuff needs to be under control before feeding progress can happen (which we also believe) and that delayed gastric emptying is evil (so do we!) and that feeding needs to involve trust and that no one should EVER sneak food into a child (did I mention we love this woman already?). She knows that Hallie is a bit complicated on the eating front and warned us that there will be setbacks (like when we have her teeth done. Sigh) but that the goal is progress overall. In any event, we really look forward to working with Barbara and getting tips from her. She has won our trust and that is not something that is easy to do where feeding our kid is concerned.

How Fun!!!

Lately, Hallie has taken to exclaiming "how fun!" or "that's great!" when she's having a good time and really enjoying herself. We're fairly certain that she's picked these up from Sesame Street, so it's only fitting that the first shot of this mostly picture post is this one, which Ami took last Thursday:


Note that the penguin, while not officially a member of the Sesame pantheon, does count among these gods of Children's Television Workshop as far as Hallie is concerned. Trust me: there are an awful lot of penguin segments on the "Street". That, and chicken scenarios. It's a whole lot harder, though, to find a plush chicken than it is to locate a plush penguin.

On Friday, Hallie and I were both happy to have our mood lifted after the rather annoying IFSP (mentioned in the previous post, and, yes, we are taking it in stride) by the unexpected and delightful appearance of Carmen and Vicky at our doorstep. They brought another fun book from Karen Katz, Ten Tiny Tickles, for Hallie as a gift. Hallie thoroughly enjoyed herself (and then proceeded to match up this book with the several other titles she has by Karen Katz. I guess she knows that the graphics are the same. I find this a bit astounding if only for the reason that Hallie has hundreds of books and yet manages somehow to keep track of them in her little brain which, yeah, I think is pretty well developed and chock full of great factoids).



Later on, Hallie modeled her new footwear for Carmen and Vicky:



Yes, those are pots on Hallie's feet. They are kind of an all purpose toy, serving just as well in the pretend-play kitchen, as drums, and as shoes.

On Sunday, the three of us had a preemie play date over at Elizabeth's house. Elizabeth, another 23 weeker, and her mom, Wendy, live in the Philly burbs and our friends Anne and Eliza drove in from Princeton. The three girls generally did well in the parallel play department (there were no meltdowns or moments of tears related to snatched toys) and Hallie and Eliza managed at various points to play within inches of one another in what could have been construed as engaged play. As moms used to questions about such things on IFSPs, we all took pictures to offer proof to the Early Intervention folks next time they come around:



Here the girls are taking some important calls:


While Hallie might be the more likely of the two to make the first approach (with her usual gleeful "HI!!!"), Eliza is making sure here that Hallie knows who is in charge:



Hallie didn't seem to mind, though. The girls actually gave each other a few hugs (and high fives) at the end of their date, and we managed to get one on camera:



Next time we'll try to get some pictures of Elizabeth, too. Sharon, Hallie, and I arrived at Wendy's a bit on the late side and Elizabeth was already getting close to going down for her nap so, sadly, we had no opportunity for a good picture of the three girls playing together.

Monday was a beautiful day---the morning was sunny and hot (upper sixties), and Hallie and I headed out for a marathon park session. I tried putting Hallie's lighter coat on her, but she would have nothing of it and requested her pink puffer coat instead. She was a bit too bundled for the weather but did not seem to mind.

When we got to three bears park, she needed to swing first thing, as usual. I put her in the toddler swings but, to my shock, her feet practically dragged on the ground and she seemed way too big for the bucket seat. I had her on the regular swing for a few minutes but she hasn't quite gotten comfortable on these yet. I suspect this will come this summer.

Then I tried staging a cute shot of Hallie sitting on the bears at Three Bears Park, but she was less excited about this than I was. The results were not as cute as I intended them to be (mostly because there wasn't someone jumping up and down behind me to get Hallie to smile) so they won't serve as a good holiday card option for us, after all.





I guess we're destined to keep the appointment I made for a holiday card shot at Kiddy Kandids at Babies R Us this Thursday (after our dental appointment. How potentially exciting).

Then it was back home for lunch and Occupational Therapy. Jenine, Hallie's OT, is going to be doing a bunch of physical therapy stuff with Hallie from here on out and we began this on Monday. I dragged the yoga ball back up from the basement, along with Hallie's hippity hop kangaroo, and Jenine and Hallie got to work.

Just one look at the expression on Hallie's face and you can tell she's going to have a blast. A really nice tumbling mat is now on the Holiday list--Hallie loves all sorts of physical challenges and, if we had our way, we'd turn the whole place into an OT/PT gym for the kid (sadly, there's no room for everything, but easily foldable equipment and inflatable stuff like balls works out quite nicely).







In sum, Hallie had a great few days. She was eating better than usual, vomiting less than usual (and we could have avoided this altogether had it not been for a failed attempt to get her to take an antibiotic the taste of which she found absolutely repulsive). Not too bad. We are now up to 164 days without vomit this year. I'm hoping that we make it to 170.

Today, however, marked the beginning of our medical marathon. We had ENT this morning followed by Ophthalmology this afternoon. The ENT appointment was blissfully brief and not terribly traumatic. However, we did find out that the left ear tube is out altogether (they are designed to fall out after six months to a year and Hallie's made it a bit over a year) and the right is falling out. However, the right ear has some granulation tissue and fluid build up, so our girl now needs ear drops (we feel a bit like a pharmacy around here, sadly). She is not very thrilled with this and it's clear her ear was hurting her tonight after her bath (she may have gotten water in it or poked herself in the ear with her finger--unclear which). She consequently spit up a bit (didn't have much in her at the time, thankfully) and cried louder than I remember hearing her cry in a long time (remember that she has a paralyzed vocal cord). She did go to sleep quite quickly thereafter, but we forgot her evening dose of Reglan and Axid amidst all the fuss and attempts to calm her down.

The eye appointment was great, in contrast. The doctor, who has been following her since she was in the NICU, was amazed to find that Hallie shows no signs of the pretty pronounced retinopathy of prematurity (ROP) that brought her to the cusp of laser eye surgery. Hallie is seeing around 20/30, which is normal for a toddler, and is a bit less far-sighted than she was last year. The eye doctor was also pretty amazed that Hallie read letters off of the screen, and not the more typical shapes, and said that we can just have our ped follow Hallie at age 3 to see how well she reads the chart and, if neither he nor we have any concerns about her vision, we don't have to come back in until she's around 4 for another ROP check. That sounds good to us!

Tomorrow is a dreaded weight check, and I'm not feeling great about it. But I am feeling great about our little girl, who is not really looking much like a toddler anymore. Judge for yourself: