Saturday, February 14, 2009
Preemie Parenting...A Lot Like Being An Octopus Who Is Waiting for the Other Shoes to Drop
Yup. I interrupt the Joys of Parenting a 39 Weeker (who was, admittedly, a bit fussy today) to bring you the regularly scheduled micropreemie parenting rant.
Let's just cut to the chase: it's not enough that Hallie suffered through a traumatic, way-too-early birth and all of the exciting features of a four month NICU stay. Nor is it sufficient that she has experienced (and continues to experience) GI hell associated with reflux that just won't quit, delayed gastric emptying (which is only moderately delayed now that she is on a high dose of reglan--75% residual at 90 minutes; the cutoff for normal emptying is 70%), food allergies, feeding issues, and a pretty distinct expressive language delay that is quickly being reclassified as a disorder. Nor is it enough that she was deemed globally developmentally delayed (by about 30%) at her most recent Early Intervention assessment.
No--we need to add some more oh-so-fun alphabet soup to the mix: suspected PDD-NOS (which, for those of you who blissfully dwell outside of the acronymic world that we inhabit, stands for Pervasive Developmental Delay-Not Otherwise Specified). In English, we can just simply call it Atypical Autism. Not quite Aspergers (which is a more highly functional variant) nor Autism plain and simple (which is a more lower functioning variant) but Atypical. You know, like all things micropreemie.
Now, a lot of our kids (meaning a goodly number of those kids whose blogs I list on the sidebar and whose parents I know from my extremely helpful micropreemie yahoo group) are about the same age as Hallie and their parents have been hearing the thuds of similar shoes dropping over the past few months. Ours came on Wednesday.
The good news from our ped is that Hallie hasn't lost weight on our attempts to get her to eat more solids (she's a hair shy of 30 lbs, which is only one ounce up from 6 or 8 weeks ago, but she's still at about the 50th percentile for her age; Lea weighed in at 7 lbs. 1 ounce, and hence had more than exceeded her birthweight). But, contrary to everything our ped has said about Hallie heretofore (she is great; what an amazing kid; she won't need special ed), this time he noted that he was concerned that she has a mild form of autism. He focused on her lack of typical eye contact (she will look at you, on her terms, but only on her terms and tends to be excessively focused on whatever activity she's engaged in, even when you try to redirect her attention); her clearly insufficient expressive language; her sensory issues (aversions to some, and seeking of many) and the like. So, in marked contrast to his decision a year and a half ago to forego the 18 month autism assessment, he suggested that we get Hallie evaluated as soon as possible.
There's a study going on at CHOP, but of course micropreemies (outliers that they are) are excluded from this. So that leaves us with a bunch of not-so-great options. We could wait 2 to 3 years (I am so not kidding) to get in to see a Developmental Pediatrician at CHOP. Or 2 years at Einstein. Or 2 years at St. Christopher's. Doing so, as the very nice woman at St. Chris' indicated to me, would, of course nullify intervening as early as possible to try to help Hallie. (She said that they did try to bump up the little ones into whatever slots get canceled, but that it still often takes a year to be seen). The other option: shelling out the big bucks (and I do mean big bucks...what ever was I thinking when I decided to become an historian rather than a developmental pediatrician who refuses to take insurance? We're talking $2500 out of pocket, no insurance taken, and no reimbursement possible because we'd be going out of network. This would mean no waiting period. But it would probably lead to penury. (Not ideal when you then have to shell out for private therapy). The intermediate option is the one we are going to take: get her in next month to the Center for Autism Research and hope that our two insurance policies pick up some of the $1500 dollars that the assessment costs. Needless to say, that expensive and swanky new Phil & Teds double stroller we just bought because it's the only one that fits through our front door and is practical for two kids who live in the city is looking cheaper every day.
OK, so where does this leave us? We're worried. Concerned. Troubled. None of this changes what we think about Hallie, of course. We know she's above average in terms of intelligence. But before you pull out all stops and say: hey, that means she can't be autistic, think again: one of the major markers of the strengths exhibited by PDD-NOS kids is an obsession with counting (check) and the alphabet (double check). All of this means that Aspergers is beginning to look like an enviable potential diagnosis to me. This is all pretty insane.
We also know that she thinks in patterns and structure; she can already do the puzzle that Jake gave her last week backwards and forwards and is doing jigsaw puzzles meant for the 3-5 range quite nicely. She loves shapes and can pick out rectangles and pentagons and not just squares and circles and triangles. That said, some of her pattern thinking is quirky: what in the world makes her associate her stuff Santa Claus with a squirty fish? Why does she have to carry around the rectangle and triangle pieces of her puzzle together? And that 'have to' thing--where she gets upset if she can't locate one or the other--that's a pretty major marker of something being off.
And why is it that she can say the alphabet, sing songs, repeat phrases, and not talk? And why does she groove on tropes so much? (By this I mean that she tends to repeat the same thing, in the same construction, be it "Elmo--red. No. Yes" or "Hello! How are You? I am FINE!" without variation). And why is it so easy for us to converse in song, counting, or alphabet recitation, but not words that convey some sort of in-the-moment meaning?
So, yeah, there are markers. And I want them to go away. I want them to disappear overnight and I want to be able to have a conversation with my kid.
On the plus side: Hallie is empathetic. She can sense when someone does not feel well and will reach out to them. She is loving and huggy. She is not prone to tantrums (indeed, she has fewer tantrums than her peers). And she wants nothing more than to interact with and play with other kids. She doesn't quite know how to do it in words ("Hi. My name is Hallie. Let's play ball!") but she will bring a ball to another kid and try to start a game of catch or, as it happened in the park today, she noted that this little boy (who was not into sharing, much to his very responsible dad's chagrin) was collecting and playing with sticks, so Hallie gathered up some sticks and offered one to the boy. She knows how to read a situation and manipulate it, albeit non-verbally. She observes what older kids are doing and tries to copy those activities (just try to convince her that she cannot use a Razor Scooter!). And she is the sweetest, most impressive little soul in the universe.
So a diagnosis, of course, wouldn't change any of that. That doesn't make us any less sad or stressed out. Or make us feel any less Job like, really. I mean, we've been to the belly of the whale and back, and can't we catch a break or two? Yes, I know, we caught the ultimate break. And her lungs are good, and shouldn't be. And her eyes are good, and shouldn't be. And her hearing is good, and shouldn't be. And she is talking and can identify most inhabitants of the animal kingdom (from panda to penguin and flamingo to frog. Koalas are a new one and leopards and tigers are still easily confused, but still). But why do more shoes have to fall? And more importantly even, when do the shoes stop falling? Or do they? We don't know the answer to these last two questions and they are the most vexing at all.
But, on the up side of things, again, because I am relentless in my pursuit of the up side: she can jump. She can hang on the hanging bar at gym. She does a pretty decent forward roll. And she's participating more than ever in her gym class (even the cleaning up part, amazing as that is if you have ever seen the floor of our home at 9:30pm). So we'll do what we need to do (what else can we do?) and help her be the best possible Hallie she can be. And love her. Always love her.