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Thursday, January 6, 2011

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!

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