Saturday, March 21, 2009
Testing, Testing, Testing
Just a few words about Hallie because goodness knows that it is taking me longer than I'd like to update the blog these days. Through a minor miracle (and some very effective string-pulling by one of Grammy's best friends who happens to work for the Developmental Peds at CHOP down in Atlantic County), we got Hallie in to see the Developmental folks last Tuesday morning for an assessment. The appointment was a long one (four hours, to be precise) and quite taxing for Hallie, but very thorough. A few residents watched her play and did the Bayley assessment again with her and then the pediatrician, who very much 'got' Hallie, administered another battery of tests. The good news is that, in terms of language, Hallie only tests six months delayed (actual) in all respects and is coming up at about 27 months. The bad news is that they cannot rule out ASD (autism) at this point. This is the gist of what the doctor had to say: when you first meet Hallie, she seems sweet and engaging but not terribly bright. Then you begin to spend time with her and watch what she does and find out that she knows quite a lot and that she is not only average in terms of intelligence but very, very bright. She's just not using what she knows terribly well in terms of communication and expression. So the doctor's assessment seems spot-on. Hallie can sight read several words (baby, bus, dog, and Hallie are clearly words she recognizes immediately), can count to at least twenty, knows the entire alphabet and has for a very long time, knows hundreds of words and signs, has memorized numerous books, songs, and tv scripts/plots of her favorite shows (and seems to know which episode contains particular letters of the day, songs, etc). She can follow two part directions pretty well. But her capacity to integrate and utilize this knowledge is limited. While Hallie knows tons of words, it's not always clear that she understands the abstract concepts behind them or how to sequence knowledge. For example, Hallie can identify all of the clothing items and food that one can point to; what she doesn't get is that the items are to be worn or eaten, respectively.
All of this means that Hallie will be is too easily dismissed as the sweet-but-shy-little-girl who sits off in the corner playing on her own. She would absolutely get lost in a school setting, in my opinion, as a result of this (unless that setting were a very small classroom with highly engaged teachers who could draw her out and help her focus on the areas where she has deficits. We are hoping that the preschool afternoon transitional program that we would like her to attend (as soon as she can get a shadow...which we hope comes through) will help her with some of this stuff. This particular school does a lot of work with sensory play and has art and music therapists on its teaching staff. It's in this realm, and not formal learning of shapes, numbers, colors, and letters--all of which Hallie has down--that Hallie needs work.
So the developmental folks recommended the following: an additional test called the ADOS (which involves a therapist observing Hallie at play) and perhaps a separate parent interview to rule out (or rule in) ASD. Regardless of what those tests show, she recommended that we get Hallie into Floortime DIR therapy now. Floortime is an approach pioneered by Dr. Stanley Greenspan (here is a link to one of his books, Engaging Autism which I ordered this week which provides a very helpful overview of how he sees ASD and his approach to therapies that can help with children on the spectrum). His discussion makes a ton of sense to me and seems relevant for a lot of our born-too-early kids who are predisposed to developing autism or the secondary characteristics associated with it. So I'm educating myself and, more importantly, have already set up a therapy session for Hallie for one of the (few) practitioners of this in Philly for next week. The second thing we've been advised to do is to get Hallie into some more occupational therapy, specifically aimed at helping her with some of her pretty acute sensory issues (even if Hallie is not on the spectrum, there is no question that she has Sensory Integration Disorder. Time to locate and dust off our copy of The Out of Sync Child.
Meanwhile, however, it does pay to note this: Hallie is using more and more language every day and she is doing so more consistently to express her wants. Her "I want please Mommy/Mama drink/cookie/up/out/etc, yeah!" phrase is being generalized and varied more (I heard "please Mama drink" today) and is sounding less rote. She is adding in new verbs ("I swing" "I slide") all the time now. And she even came out with a new two-word spontaneous utterance this week: after her bath, as the water was draining out of the tub, Hallie said: "bye-bye water". Hallie's articulation is also clearer. And, in terms of non-spectrumy behavior, there is no question that our little girl is engaged in the outside world and people around her: today we visited the Please Touch Museum with Jake (pics to follow at some point!) and Hallie wanted to show Jake something while we were at the water table ("River Experiences") section. She went off to look for him and when she found him, shouted "There he is!" and ran over and showed him her boat and flashed him a huge smile. She also is missing one or the other of us when we leave the room and now calls out "Mommy! Mommy! Mommy!" or "Mama! Mama! Mama!" depending upon who is missing (she has long experienced awful bouts of separation anxiety, but now she is putting words to her feelings). And she is clearly aware of and engaged with Lea (as the other post I just put up shows quite well).
While Hallie does do her fair share of lining up toys, that's not the only--or even primary--way in which she plays with her them. While she enjoys lining up blocks and sorting them by color and shape, she also grooves on building towers and knocking them down, for example. She might line up her Sesame Street figures on the couch, but she also shoves chips and cookies into Cookie Monster's mouth (something I am none too fond of, I must say, since it takes a few q tips to dig out the crumbs). And Hallie has been grooving on the new tea set we just gave her and will pour tea for herself and for us and clink cups and say her version of "cheers" and not just gnaw on the lid of the teapot (which I think poses a major choking hazard and is the primary reason this tea set is rated for the three and over set).
Hallie seems at her worst in terms of sensory stuff when she is tired and overloaded (and large numbers of kids in one space does provoke sensory overload, in my opinion. We saw this at the playground the other day and a bit at the Please Touch today). She doesn't tantrum--or hardly ever tantrums, anyway--but she does shut down and that's when we see her withdraw and focus on things like peeling crayons, chewing on her cuticles, or pulling her hair.
The same sorts of aberrant behaviors come out when Hallie is stressed, which is often while she is eating. So we've tried to make meals more enjoyable (and a bit briefer--now down to 45 minutes, and damn the calories!) Bacon, one food that Hallie loves goes a long way in helping here, too. (When given a choice between cheese and hot dogs, Hallie often chooses bacon and asks for it by name). Speaking of choices, Barbara, Hallie's most excellent feeding therapist, has come up with a plan to give Hallie more autonomy during meal time. Instead of asking her to take bites of what we want her to eat, we now give her options of what food (from a field of two, though Hallie has obviously added a third at times) and how much (one or two bites?). The TV is off during the eating of those bites (which prevents distraction) and is a reward for having eaten them well (though Hallie now sometimes just tries to swallow food too quickly to get back to the more enjoyable endeavor of watching Elmo's antics). This has gone relatively well this week, even with Hallie's second cold this month (she is in the middle of a non-stop snotfest right now, which really sucks, but she is getting better at wiping her own nose).
And since no Hallie update is complete without a tally, here we are: 45 days of vomit free life this year and one new food passion: the insides of Newman's Os or Oreo cookies. She likes to lick out the icing and return the half cookie to us, though I did spy her gnawing a bit on the chocolate yesterday. And she does seem to prefer the chocolate to other flavors: when I tried to give her a Ginger creme Newman the other day, she said "No! Black one!" to me. Let's hear it for food preferences and the language needed to express them!