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!

Say "AAAH!": A Post About Dentistry and Medicaid

Two weeks ago, I took Hallie in to the Pediatric Dental Clinic run by CHOP at the University of Pennsylvania Dental School for her six month check up. I did this with some trepidation; Hallie is no big fan of dental work and is pretty averse to having anyone put stuff in her mouth -- this isn't just an issue of food. Who can blame her, really; she has a history of doctors shoving endotracheal tubes; oral gastric feeding tubes; small cameras; and a bunch of other medical devices into her mouth and down her throat and a very long history of plenty of stuff coming up out of her that should technically stay in her stomach.

On top of this, we have considerable mommy guilt about Hallie still being on the bottle and still falling asleep with it in her mouth. The dental attending whom we saw at CHOP/Penn last winter was unforgiving about this, to say the least, and put the blame squarely on our shoulders. In no uncertain terms, she accused us of being irresponsible, negligent, and even abusive parents who had done their daughter a serious disservice by not putting a G-tube into her tummy instead. When I plead my case, it fell on deaf ears. Thankfully, the dentist who actually performed Hallie's dental surgery (a thorough cleaning, x-rays, and an extraction) last February was far more understanding of our location between a rock and a hard place and wasn't into moralizing or reprimanding us. But still the mommy guilt lingers on: even if we know that Hallie can grow, or at least hold her own weight wise, by still consuming most of her nutrients from a bottle and that she went on a full food strike when we tried to remove it from her this past winter, and even if we know that we're sort of given a pass by virtue of the disabilities that we wish she did not have, it doesn't help to walk around thinking that we are harming Hallie, or at least her teeth, by not removing the offending bottle.

In the intervening months between last February and now, we've managed to get Hallie used to--and even fond of--brushing her teeth. At first, we just let her chew on the brush and put a bit of fluoride toothpaste on it for her. As it turns out, she much prefers our cinnamon flavored Crest to the bubble gum kid's variety emblazoned with the likeness of Dora the Explorer or Sponge Bob Squarepants. We then started to brush for her, and, over time, she began to open her mouth wider and wider for me and let me do an increasingly thorough job. She's now at the point where she will sort of brush her own teeth (though my efforts are more effective) and will ask to brush her teeth multiple times a day. She's even gotten good at spitting water out after she's done (indeed, this activity is one she finds extremely appealing). I haven't managed to get her used to swishing around fluoride rinse but that's something we'll continue to work on with Hallie. So, at least from the perspective of oral hygiene, we knew that Hallie's mouth is in a better place now than it was a year ago. Still, the nagging feeling that we're ruining her teeth with the bottle lingered on.

As it turns out, we were right and the Wicked Witch Dentist of West Philadelphia was very wrong: it wasn't the bottle that was eroding Hallie's enamel but the chronic regurgitation. Now that she vomits infrequently, she's doing a whole lot less damage to her teeth. (We're now at 239 days without vomit, and counting, for 2009). As it turns out, her mouth is in great shape and there has been no further discernible damage to her teeth this year.

But I'm getting a bit ahead of myself here.

To prepare Hallie for the visit to the dentist, we began by telling her social stories. I let her know that a dentist was going to take mirror, put it in Hallie's mouth, and use a big shiny light to see her teeth. Hallie and I looked at her teeth in the mirror and practiced 'saying Ah!' and opening wide. I told her that she would have to lie down on a very big chair and that the dentist would look and then brush her teeth for her and that it would not be fun but that it also would not hurt. We went over this scenario for a few days before the big event.

When we got into the dental office, Hallie was very cooperative, at least at first. The dental student showed her the mirror and allowed Hallie to play with it, look in it, and place it in her own mouth.

Matters became a bit dicier when the dentist actually had to reach in and have her own look around inside Hallie's mouth. This elicited some tears, but not too many:

Hallie did work hard at "being brave" and held my hand the entire time.

Matters got a bit worse when the dentist brushed her teeth for her, but not too bad. Since we are using a regular toothbrush at home, the dentist decided to use a regular one to do the cleaning, but showed her the 'tickle brush' (the electric version typically used for cleaning) and told her we would be using this one next time. We'll pick up a battery operated toothbrush to use at home in anticipation of this next visit, I think.

The only time things got really dicey was when they had to paint Hallie's teeth with fluoride for her treatment. Hallie's not a big fan of bubble gum flavored stuff, and, besides, the fluoride no doubt tasted more medicinal than bubble gum would have, so there was some gagging but no heaving during this procedure and we escaped the office in the same clothing in which we arrived and without leaving a pool of vomit in our wake. That was a pretty major victory, as far as I am concerned.

Unfortunately, upon leaving the practice area and going to check out, I was delivered the news that Hallie's insurance through Medical Assistance (Medicaid) had been canceled. Having to pay out of pocket and knowing that I was about to face a huge battle for reinstatement left me with a bad taste in my mouth.

(Note: it's not like we don't have private dental insurance for Hallie; in fact, we have her double insured for dentistry under our own policies. It's just that the CHOP Dental Clinic, which serves only those who are Special Needs or poor, only accepts Medical Assistance. And while there are pediatric dentists who do take our insurance, we were pretty badly turned off by the biggest Center City practice and unable to locate another private practice that was good at treating special needs kids locally).

By the time we got back in the car to go home, I had confirmed with the HMO that administers our Medical Assistance plan for Hallie that her insurance had, indeed, been terminated, effective October 31, 2009. This meant that bills for all the therapies that she had received during the week (Floortime/DIR; OT; PT; Speech; Special Instruction; and her Personal Care Assistant) were going to go unpaid. Even more significantly, it meant that all of these therapies were in jeopardy and might require suspension while I worked out this kink in the system. The cost of these therapies is probably in the area of a thousand dollars a week. I can't say for sure how much the total is because we never see bills; up until this point, they would just get paid. The only thing we ever needed to deal with was getting the proper referrals and prescriptions and calling to make sure that Medicaid, as our secondary insurance for Hallie, got billed for co-pays. But there is no doubt that the therapies are expensive and that having to cover them all while we worked out this problem would have been impossible for us to do; Hallie's therapy costs exceed our mortgage payment by about 200% and juggling both would have involved bankrupting ourselves and maxing out our credit cards.

So I needed to step into high gear and solve this crisis. Which is precisely what I did the second I got home. First, I went to this website put together by the Pennsylvania Health Law Project to bone up on the procedures for certifying that Hallie falls under PA Loophole 95, which allows disabled children to be covered by Medicaid in the state of Pennsylvania regardless of parental income. Then I got on the phone with my contact over at the Disability Rights Network of Pennsylvania to explain what had happened and to make sure that I was handling matters correctly. Both agreed that Hallie should not have been dropped from the Medicaid rosters in Pennsylvania; instead, I was supposed to have been provided with a written request for a review of her status to determine whether she was disabled and prior written notice that afforded me a ten day period to appeal any effort to disenroll her from Medicaid. We never received any of those things. Calling the local Medicaid office proved useless since it was impossible to get a live caseworker on the phone, let alone a person who knew anything about the provisions governing disabled children.

Thus, I spent the better part of last Thursday evening assembling all the documentation that we might need to re-apply for Medicaid for Hallie and filling out the forms at the Department of Public Welfare's website. And on Friday morning, I high tailed it down to the local DPW office to submit all of this stuff in person. Fortunately, we were in the midst of a transit strike in Philadelphia. While this made my life more miserable since it entailed a long walk back into Center City from the DPW office (happily, Sharon dropped me off there on the way to work), it meant that the office was less crowded than it typically is and I was able to get in and out of there in under four hours. And it is a good thing I went in person; not only did it mean not having to risk losing original copies of Hallie's birth certificate and Social Security card, but it also meant that I didn't make needless errors on the extraordinarily confusing (even for me) paperwork that would have resulted in the whole thing being bounced back to us for completion.

So I got the paperwork in, but then the question became: how in the world do I fast track it? That's where my contacts over at the Disability Rights Network and Health Law Project really came in handy. I felt like it was a pretty major victory that we managed to get Hallie reinstated for Medicaid in two full working days: by early Tuesday morning, her case was provisionally approved and her bills were being paid again. It was kind of a no-brainer: Pennsylvania is a very liberal state when it comes to insuring children generally and covering the medical costs of those with disabilities in particular. Both Hallie's global developmental delays and her diagnosis of Autism Spectrum Disorder, for which we have corroborating paperwork, easily qualifies her for coverage. Sadly, this is not the case in many places in this country. But, what really helps is that I am very familiar with the law and with where one must go to find help in making sure that it is implemented correctly. Trying to get this done without intercessors who knew how to contact the proper people within DPW and actually had sufficient clout to get them on the phone, make them pull up Hallie's records and review them on the spot, and then authorize a status change, retroactive to October 31st, would have been, as Hallie likes to put it, "very too hard."

So, all in all, it was a minor hassle and I still have to figure out how to get our out-of-pocket dental expenses reimbursed, but all's well that ends well. And, most importantly, Hallie's teeth are fine and we don't have to put her under for another dental surgery any time soon. But I definitely could have done without the drama and the wasted time and the crisis mode into which this little event thrust us.