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!