Happy Memorial Day!

This weekend was the unofficial start of summer, so what better way than to celebrate it in a pool? The kids had ample opportunity -- on Sunday evening we spent time with Grammy and her friends at a BBQ hosted by Jeanette (who happens to be the mom of the most excellent guy in the world who saved our butts when we ended up with a flat tire on Sunday night...he could have just given us directions to the closest gas station where we could fill our tire. Instead he followed us there, which ended up being a very good thing since we had a nail in the tire. Then he jacked up the car, removed the tire after a bit of a struggle to dislodge it from its axle, and put the doughnut on for us. I guess there was a very good reason why Lea snuggled up to Curtis and made flirty eyes at him...).

Anyway, before the tire saga, we enjoyed a lovely day on Jeanette's patio in the pool that Grammy bought for the kids:





Then, on Monday, I took the girls over to Renee and Kim's to play with Taylor while Sharon drove the car over to Pep Boys to have the offending tire repaired and put back on the car. We dashed into Whole Foods on the way where I got some burgers and hot dogs and corn for the grill. The kids played inside for a while and then repaired to the third floor deck which now sports a wading pool (same one as our new one, as it turns out), a Step 2 play house and a pirate cove water table.





The girls had a blast: they enjoyed splashing in the water and then going to the 'snack bar' (the play house), where Kim played short order cook. There was lots of real eating (Lea loves her corn, as we all know by now, and Niman Ranch beef hot dogs and Whole Foods' steakhouse burgers are quite delicious) and lots of pretend play. This was followed up by ice cream for dessert (Hallie is a bit of a chocolate ice cream fanatic, which probably accounts for her slow but steady weight gain this spring) and a few zips around Renee and Kim's living room in Taylor's Radio Flyer wagon for each of the girls (Hallie started out pushing Lea but then asked to take her own turn with Lea on her lap. This made the wagon quite heavy but, fortunately or unfortunately, row houses in Philly are so small that it's not like we were pushing the vehicle for a particularly long distance).

By the time the evening was over, the kids were exhausted. It's no more than a five minute drive home from Renee and Kim's house to our place, but somehow Hallie managed to fall fast asleep in the car on the way. Usually she'll wake up when the car stops or we remove her from her car seat, but not this time around: she was out for the count. Sharon brought her upstairs and laid her down in her tank top and shorts and that was it for Hallie for the night. Lea was almost as tired as her big sister (she had a mini nap at Renee and Kim's, but no real nap that day) and so she went down (on Sharon's lap, in nursing position) pretty easily.

That meant that, for the first time I can recall in a very long time, we were almost kid-free (I suppose the fact that Sharon was holding Lea warrants the placement of the 'almost' in that sentence) for the night. This allowed us to finish watching the final hour of Julie & Julia, which we'd been meaning to see since it came out in the theater (we don't actually get to go to movies, but Sharon did buy me the DVD for the holidays, and it's been cued up in the player since then...). We thoroughly enjoyed it, and each other's adult company.

So, suffice it to say, a great Memorial Day was had by all!

Lea the Imp

Lea has quite the personality and now that she is getting on 16 months of age (where in the world has time gone?), it's becoming more and more pronounced.

First, there's her fashion sense:

Our kiddo is fond of trying on all sort of eyewear and haberdashery and frequently can be found wandering around the house in one shoe (for some reason, always the right one). It's not that she cannot locate the second shoe; that would be me: I often spend the last five minutes before leaving the house in search of one or another kid's missing shoes. Lea can invariably lead me to it since she's often the one who has hidden it.

Lea loves hiding stuff. She has her favorite locations--behind the easel, in the cushions of the couch, and inside the recesses of one of the toy bins, to name a few. Pieces and parts of toys will go missing for days and I will spend hours searching for them (I absolutely hate putting away an incomplete puzzle or toy and it's hard for me not to obsess about the missing parts). I will just about have given up when Lea will present me with the part that has gone missing or the item will resurface, always in the possession of our little imp. Lea, who has long been a devotee of hiding her face and playing peek-a-boo games with us now has taken this one step further: the other night, she grabbed two of her favorite dollhouse residents and began hiding them under the skirt of the couch and playing peek-a-boo with them. She'd get very excited when I 'found' them and said 'peek a boo'. It was totally cute.

Another thing that Lea really enjoys is animals of all kinds. Zen, of course, is her favorite, and she can often be found chasing Zen around the house, offering him food and toys (she's extraordinarily fond of sharing and often tries to get Zen to suck on her binky or take a bite of her ice cream), or trying to dress him up in various items of clothing that Lea picks up (we often have laundry in various stages of done-ness at the base of the stairs that are either heading down to the washing machine or upstairs to be folded. Dragging them around the house, climbing into a laundry basket if available, and creating a general mess and tangle of clothing is one of the kids' favorite pastimes). She also has this little blue lotion bottle (that goes with a doll-care set) that she particularly associates with Zen.

Whenever she sees Zen she grabs the thing and tries to slather him with (fake) lotion. If she can't find Zen, she'll call out for him. I believe that she has acquired this habit from me. It's absolutely hilarious to watch Lea stand at the base of the stairs screeching, "Zen! Zenny! Cat!" in an effort to have him come downstairs so that she can love on him:

Lea doesn't just use Zen as a pillow. She also tries to use him as a chair. Last night, when we were hanging out downstairs, she gave me this impish grin and then began to lower her tush onto Zen. And tonight she decided that Zen would make a really great horse and straddled him, Western-style, and began to bop up and down. The cat mostly takes whatever Lea has to dish out; he even tolerates her dress-up play. He apparently understands that she's a baby and that everything she does to him is motivated by pure and simple love.

But Lea's love of animals doesn't stop at Zen. If there's an animal anywhere in the vicinity she seeks it out. A few weeks ago, I took the kids to the Academy of Natural Sciences, which features a children's museum called Outside In. The exhibit includes lots of rocks, space for digging in the sand, some puzzles and animal- or nature-themed toys, and a few live animals which the handlers will regularly remove from their cages so that the kids can get up close and personal with them. It would be an understatement to say that Lea was both thrilled and that she knew no fear.

Alas, I did not get a picture of Lea petting the rabbit directly, which she did many times, quite enthusiastically. This was mostly attributable to the fact that I was trying to save her fingers (and other body parts) from the bunny's extraordinarily sharp teeth.

After the bunny was put back in his cage, Lea moved onto a skink (which is apparently a diverse family of lizards):

Lea is also enamored of animals that are merely representations of their living counterparts. She is particularly fond of ducks and likes to walk around with rubber duckies in her hands saying "duck! quack quack!". She also points them out to me whenever she sees them. Of course, we live in the middle of the city and there are not too many ducks walking around the streets (or even hanging out in the parks and playgrounds that we frequent) around here. Never mind: Lea is happy to point to pigeons and say "duck" and whenever I correct her by saying, "No, honey, it's a pigeon" or "that's a bird" (trying to keep things simple for her) she shakes her head at me and emphatically stomps her feet and says, "DUCK!" even more loudly. Here's Lea with a 'duck' (yeah, I know it's a goose...I'm pretty sure it's the one who laid the golden egg...) at the Please Touch Museum.

And here's Lea with a cow from the same exhibit.

To my knowledge, she doesn't say cow yet, but give her time!

What Lea does say is pretty much everything else. She is extraordinarily fond of pulling up her shirt and saying "belly!" with a great deal of pride while she clutches her tummy. She asks for strawberries, crackers, ice cream, bottles, and corn. She calls Hallie "Allie!" and me "Mama!" and Sharon "Ah-Mah!" (we have been trying to get her to say "mommy" to no avail). And she can even request her favorite episode of "Gabba" (Yo Gabba Gabba), which is the "Art" episode by asking for "Art Show," a song which she enjoys singing.

Lea loves singing and will often sing to herself in the stroller or car seat. And her favorite song is the same one that enraptured her sister at this age, the "ABC song." Lea loves her ABCs and can sing along with most of the alphabet. She also loves her Leapfrog magnetic alphabet toy and I am pretty certain (having done a few process-of-elimination experiments after Lea grabbed the O once and said "O") that Lea knows at least that one letter by sight.

Lea continues to enjoy lots of food, but mostly in small quantities. She is particularly fond of grazing on berries:

Lea's penchant for small portions, however, did not stop her from devouring an entire ear of corn on the cobb last night at our Memorial Day get-together with Renee, Taylor, and Kim. And it definitely did not stop her from stealing my hydroponic basil plant from off of the counter and chomping away happily on it:

At her 15 month appointment, which was a couple of weeks ago, Lea clocked in at 22 pounds and a little over 30 inches tall. She's at about the 30-40th percentile for height and weight (and hence, oddly, smaller than Hallie was at the same age). Her head, however, is at the 75th percentile or so (which means that hats that fit Hallie are a bit of a tight squeeze on Lea). But lots of impish things come in small packages, and Lea is great proof of this.

That's all I have time to write at this point (it's taken me five days to finish this post!) but I promise to try to be better about updates.

As Lea might say, as she tries to lock or unlock the door, "Bye Bye! Have a good day!"

IEP is Done!

It took about 3 hours to hammer out Hallie's IEP for 2010-11, but it's done and it's pretty good. We're keeping Hallie at her excellent typical-but-explicitly-inclusive private preschool next year, so we didn't even raise the issue of a school-district-funded (free) preschool during the IEP. And most of her services will remain the same (one hour a week of OT, one hour a week of Speech Therapy, one hour a week of Special Instruction, and two hours a month but with the carryover of many of the makeups that have yet to be completed of Physical Therapy). But I advocated for several important additions and modifications:

1. That Elwyn will fund a Social Skills Class for Hallie that meets three times a week at the YCCA (her school) in the afternoon.

2. That Elwyn will get her a PCA (personal care assistant) for those additional hours, for a total of the 22.5 hours per week that she'll be at the YCCA.

3. That we will assess her for the use of Assistive Seating so that she has more trunk support, which is necessary for her to work on and master those ever-important fine motor skills like holding a writing implement or scissors, manipulating things like buttons, snaps, and fasteners, etc.

4. That other assistive devices will be tried out to aid with those skills, too.

When I prepared for Hallie's IEP (which probably amounted to around 40-60 hours of prep time over the past three to four weeks), I began by reading the IEP that is currently in place. It became clear to me that Hallie has made remarkable progress and in most cases has managed to achieve her goals for the year (even if just recently, as is the case for her PT/gross motor skill goals). Over the course of the last year, Hallie went from simply labeling objects in one-to-two word phrases and making very simple demands to us at home and not talking at all at preschool to using, on average, four-to-seven word sentences (and considerably longer ones of late) to describe objects and processes that she sees both here and at school. She has a robust vocabulary and uses lots of fairly sophisticated adjectives and verbs (The other night, while taking a bath, Hallie, for example told me the following: "the submarine is going in the water, it is sinking; let's take the red submarine and go see some fishies! I see a red crab and a goldfish! Now it's raining out [she made it 'rain' with some of her toy cups]--it's really pouring!"). She also shows us stuff and describes it thoroughly (and doesn't just randomly label) and is beginning to use less 'scripted' language (though she often resorts to that in certain circumstances. For example, she introduces everyone to Lea every day; she'll even introduce me to Lea with her stock phrase, "This is Lea! She's my baby sister." It's a bit odd given that I met Lea before Hallie ever did!). Hallie also consistently greets kids by name at school and will engage them in structured play (she is a big devotee of red-light-green-light-1-2-3 and duck-duck-goose).

So this next year's speech goals (which are also shade into her goals for Special Instruction) include expanding conversation in a functional and meaningful way with her peers. The goal is for her to take 3-4 turns in conversation and to talk about whatever it is that they are discussing and not just revert back to her interests (which usually relate to the animal kingdom or her beloved Nick Jr. 'shows'). Hopefully some of that scripting, which is already beginning to recede to the same place that most of the echolalia has retreated, will be replaced with real back-and-forth turns. This doesn't come naturally for Hallie, but she's so eager to communicate and has so much knowledge (she remembers EVERYTHING. It's kind of scary, really).

Hallie accomplished most of her PT goals, too. This is amazing given that she had no PT at all until September (in blatant violation of the IEP, as I was quick to point out) and then only had visits intermittently and when the spirit moved her old PT (who often showed up late, if at all). Lisa, her current PT, is great and is doing some important stretching exercises with Hallie, who has now mastered going up the stairs holding one railing putting one foot ahead of the other (and can do it without holding on sometimes too); going down the stairs holding onto two railings, foot over foot; and can navigate elevations much more fluidly. We'll work on perfecting those movements and on one-footed balance and hopefully hopping over the next year.

She still has a funny gait and runs in a guarded position, and the tightness of her hamstrings and ankles impede her mobility. This, combined with the remarkable weakness of Hallie's fingers makes it clearer and clearer to all involved that Hallie has a mild case of CP. How this will play itself out in terms of her fine motor skills in particular has yet to be determined, but I think we'll have a better answer next year than we do right now.

The weak link in terms of goal achievement last year was in OT, unsurprisingly. While Hallie transitions better, pays more attention to stories that are read to her for longer periods of time, and is generally able to self-regulate more effectively than she was this time last year, Hallie's fine motor skills have progressed little if at all in that time period. That's part of what really had me down when I re-read her IEP from last year. The big question that Hallie's school-based OT and I kept pondering was why, and what we could do differently in terms of strategy to make sure that Hallie meets those goals (holding and manipulating implements with a mature grasp; using the muscles in her hand and wrist to write and cut and not those in her shoulder and forearm, etc).

That's what led me to do a considerable amount of research on the current literature on fine motor skill development. Some of my fellow preemie moms suggested that we consider assistive seating, which is absolutely important to stabilize Hallie's trunk, which is very low tone, and a variety of different devices to help her isolate and develop the muscles she needs for those fine motor activities. Getting this written into the IEP was essential, and so hopefully we'll be working on getting Hallie a Rifton Toddler Chair (or some other similar chair) that supports her body properly, brings it into a natural position for fine motor work, and provides her with the proprioceptive (sense of her body in space) input that she requires. This, plus more focus on fine motor skills in her school-based OT sessions and our weekly hour of private OT will enable Hallie to draw and write more comfortably. Right now, it's so incredibly hard for her to do so, and it breaks my heart every time Hallie tells me this (and who can blame her; it really is too hard). Hallie is a perfectionist and knows how she'd like things to look and her letters and pictures simply don't look the way she wants them to. Hallie can spell out loud; can tell us numerous words that begin with different letters (and this is not just a script; each time she goes through this she uses different words so it's clear that she has either memorized the beginning letters of hundreds of words, which I don't put past her, or she knows what sounds each letter makes. I'm not sure which just yet). The only thing stopping her from writing are her weak little hands.

These hands also prevent her from dressing herself completely. She can pull on her clothing if it has no fasteners and is a pro at velcro, but when it comes to buttons, snaps, and such, she's unable to push hard enough to close them. She did start a big zipper on her own yesterday (she has good hand-eye coordination) so we are getting somewhere with these functions. But if you stop and think about the number of times you use the pressure in your fingers to accomplish things each day, you will get a sense of what stands in Hallie's way where true independent functioning is concerned. Every time you push a key in a lock and turn; open a container or jar; pull apart or fasten a ziploc bag; write a note; etc, you are using these essential hand-and-wrist muscles.

Anyway, we're hoping that some concerted OT work and some concerted Social Skills work will help Hallie achieve kindergarten-readiness. Our very strong sense is that we should leave her back a year (in other words, rather than enroll her in kindergarten, for which she will be eligible when she turns 5 next summer, we'll enroll her in kindergarten according to her estimated due date, which was in October). This has some risks attached with it: kindergarten is not mandatory in Pennsylvania and the school district (here or elsewhere) can insist on enrolling her straight into first grade. I will helpfully point out that, while this theoretically could save them money, if there's a possibility that she might catch up/require fewer special education services if we give her a bit of time to mature socially and develop skills, this could save them a whole lot more in the long run. Should she remain in 'the system' for her entire educational career, they will need to provide services for her until age 21 according to the IDEA. Should she age out of the system and/or require fewer supports, and should she be able to graduate high school and transition to post-secondary education or a job, they are off the hook. And, as I pointed out to Sharon, if all else fails and our argument falls on deaf ears, there's nothing stopping us from enrolling Hallie in a private kindergarten for a year before transitioning her to public school. So we'll see, but right now we are thinking that holding Hallie back makes the most sense, and is probably the better bet in terms of preserving her self-esteem, too.

The Things Hallie Can Do

On the eve of Hallie's second IEP, I find myself a bit too antsy to settle down to sleep (though I know that I should). I hate these things: I hate what they represent (that Hallie needs some extra help to do stuff that comes naturally and easily to most other kids her age); I hate that I have to fight to get her the things that she needs, though honestly there is no better advocate than a parent; and I hate meetings. I really do. When I was chair of my academic department, I was very, very good at keeping meetings to a minimum and making sure that they were short.

Anyway, what better time but now to blog? (It helps that I am already as prepared as I can be for this meeting and that I know what she needs and what I want to get for her; it also helps immensely that the semester is over, the grading is done, and that the dinner dishes and toys are all put away).

So, in the spirit of the half-full glass, this is all about what Hallie CAN do and some of the strides she's made recently. It's not an exhaustive account by any means (I'd have to liveblog her life at this point, since she has changed so much and has done so many new things over the past couple of months), but it should give those of you who (used to) follow this blog a nice Hallie fix.

1. Hallie can ride a two wheeler. No one taught her how to do this. She just took off in the aisles of Toys-R-Us when Sharon was out shopping for a new, bigger bike for Hannah for her seventh birthday. Who knew? Hallie had never been on a two wheeler before. She just instinctively knew how to ride it (hippotherapy and watching her cousins and other big kids probably helped some, too). And here's a bit of proof. The video sucks but it should give you a clear enough idea of how well she can handle a big girl bike. Just click on the picture and you'll be redirected to the video website:

From My Videos

2. Hallie also is teaching herself how to swing properly on a 'big girl' swing. This is still very much a work in progress but she's getting there. She will repeat 'in and out...in and out...in and out..." and then tell me that she is "swinging just like Hannah." While she can't quite get herself started swinging, she can keep herself going on her own for a little bit now, which is a great relief to a mom who has spent the better part of three years pushing her swing and who now has to split her attention between two kids, one of whom most decidedly must remain in a "little girl swing" for some time still.



3. Eat new foods and like them...sometimes quite a lot.

We fairly recently discovered that Hallie loves chocolate. She can consume quite a bit of it at one sitting, too. She has been known to scarf down five or six Hershey's nuggets within a few minutes and she regularly demands chocolate bars. This, of course, made Easter her kind of holiday.

We bought a bag of Hershey's Easter Eggs for her a few weeks before the big day just to get her used to the new, seasonal shape of her chocolate. Transition from a fairly flat bar or chunky nugget to an ovaline shape may not seem like a big deal to most of you who are reading this, but put yourself into the shoes of a kid who is high functioning on the autism spectrum who has a bad case of food neophobia. Apropos of this, just today she pitched a major fit when I tried to give her a square graham cracker instead of the rectangle that she requested. I tried to explain that two squares were equal to a rectangle and that all of the crackers in the packet that was open had broken in half, but no go. I ended up opening a new packet just to avoid an escalation of her tantrum. Yeah, I know, it didn't solve anything, but honestly some battles aren't worth fighting and these include pretty much all battles over food. But I digress.

Anyway, the egg shape wasn't a problem at all for Hallie and she ate her way through two or three bags of chocolate eggs before Easter. But that did not at all dampen her delight on Easter morning when she discovered her basket full of goodies:

Of equal importance, of course, is that Hallie got the idea of Easter. If you recall, back at Christmas, she was not so clear on who Santa was, why he was coming, who, exactly was leaving all of those presents under that fake tree, etc etc.

This time, however, there was no doubt that she was mesmerized by the concept of the Easter bunny. She left carrots for him (bunnies, of course, love carrots) and had a blast hunting for the chocolate-filled plastic eggs that he left. She and Lea both had a grand time on Easter morning. Never mind that, were you to ask her what the Easter bunny's name was, she'd say "His name is Ollie!" (If you are a devotee of The Wonder Pets, as Hallie very much is and as I am by virtue of being a denizen of a home that is brought to you by Nick Jr., you know that the show regularly features a bunny named Ollie. Hence all bunnies are named Ollie in Hallie-wood.)

Hallie thus was quite enamored of the giant Easter bunny on the premises of the church where her preschool rents space and was thrilled to take a picture with him:

Anyway, Hallie's new foods are not limited to chocolate, egg-shaped or otherwise. She has also become a regular consumer of peanut butter sandwiches and, more recently, peanut butter and nutella sandwiches. She was a bit skeptical about the concept of chocolate spread but once she tasted it, she was hooked. (And who wouldn't be, really?)

In feeding therapy, which continues to go well, Hallie is learning how to eat slivers of grapes (adding another fruit to her repertoire of avidly-consumed apples and watermelons and more skeptically eaten slices of banana). Her food journey remains slow, but she is branching out and learning to be a bit less afraid of new things.

Snacks, and crunchy ones in particular, are easy for her to integrate into her diet and she now regularly requests crackers; enjoys popcorn; and made a happy discovery in the form of crunchy cheetos. But she is straying further and further into food regions uncharted. For the past few weeks, she's been intrigued by berries. She won't eat them yet, but she likes to hold them and offer them to me, to Lea, and to her Wonder Pets figures (whose faces ended up smeared with blackberries the other day). And she's been willing to lick strawberries even if she doesn't eat them. We take it slowly around here, and that's fine.

But sometimes she surprises us. Tonight I made pasta for dinner (wagon wheels with a fairly mild shrimp fra diavlo sauce). I served up portions for Sharon and myself and put a bunch of wagon wheels, sans shrimp, into a bowl for Lea, who was sitting at the table with us. Hallie came over and asked for pasta and then proceeded to actually eat the whole bowl and request some more. She probably had fifteen or twenty little wagon wheels and pronounced that she "loves pasta." I am not sure if this experience will be replicated any time soon, but it was wonderful to have her eat the same thing that we were eating.

4. Another great thing that is happening is that Hallie is developing real friendships.

Hallie tends to gravitate towards kids younger than she is, like Lea or Taylor, or friends who are slightly older than she is, like Alex (pictured below in a very nice shot of our girl).

But she is also beginning to initiate more real interactions with the kids at school, which is great to see. The other day, when I went to pick her up from school, the kids were all outside in the yard playing. Uncharacteristically for her, Hallie did not sense that I was around and continued to play a very fun looking game of "Red Light, Green Light, 1-2-3" with a couple of the other little girls in her class who are her regular playmates. It was wonderful to watch and, even though Hallie still speaks less than her peers do, she finds a way of engaging with them and the kids really do seem to enjoy her presence.

4. Hallie is also speaking more, and more fluidly.

At home, Hallie is turning into a bit of a chatterbox. She regales me with discussions about animals and lets me know the natural habitat of each of them. Sadly, for Hallie, the lion's natural habitat is not just the jungle but also the zoo. She is going far beyond just labeling these days. For example, she says things like: "bees live in a beehive. They make honey. Bears love honey! Three little bears live in the woods! They eat porridge with Goldilocks. Goldilocks is the big bad wolf!" (I blame Sesame Street for that piece of misinformation; one of their shows is about mixed up fairy tales; Goldilocks goes on vacation and the big bad wolf takes her place. The two shall forever be confused in our little girl's brain, alas).

Anyway, the point is that Hallie can go on and on now and, while conversations tend to revolve around things of interest to her and don't involve a huge amount of back and forth, she's making huge progress and I imagine that, with a little work, she'll move into real, functional, meaningful conversation with us and with her peers.

5. Hallie's pretend play skills really are emerging. She's not quite at the point where she is crafting really extensive scenarios and she is using her favorite shows (especially The Wonder Pets) as a jumping-off point, but these days, the Wonder Pets and Hallie regularly rescue various creatures. Her little Lego people regularly take adventures in various vehicles. And some of her toy figures have embarked on submarine voyages in the bathtub where they go diving to see lots of different kinds of fish and crustaceans who apparently live on the sea floor of our bathtub. I am always thrilled to ride along with Hallie on whatever journey she is crafting and enjoy seeing where it may lead.

So, even though I feel a bit of trepidation and a bit of sadness that tomorrow I need to go through the ordeal and hassle of Hallie's IEP, one of the really great things about being Hallie's mama is that the journey we're on is not about special education or services or fighting the school district. The journey we're on is about Hallie and watching the miraculous progress she is making unfold. And that's kind of the point of parenting, isn't it? Sometimes it takes euphemistic adjectives like "special" to make you aware of how special, used in no sense euphemistically, your kid really is.

Happy Mothers' Day!

Notice the plural usage? That means that we have double the celebration coming our way...Sharon and I sure are looking forward to the kids making us breakfast in bed, a lovely dinner preceded by cocktails, or perhaps an elegant brunch at a four star venue. Of course, right now we have to take care of the details on our own. Lovely flowers:


An elegant brunch of Eggs Benedict (the first I ever made, and it came out well) for Sharon and eggs and bacon for me, accompanied by mimosas, and a lovely filet mignon and truffled mashed potatoes for dinner. In between, lots of time with the kids. What could be nicer than that?

This, on top of a lovely family celebration with Aunt Laura, Grammy, and Grandma Sandy on Saturday, made it a wonderful Mothers' Day indeed.

Anyway, I promise to post a recap of our lives over the past month soon. I just need to get through my end of the semester grading, which has to be squeezed in around childcare since we have been without a nanny for a couple of weeks now (Nadia moved back home to take care of her dad who had a stroke this winter; this lack of childcare business is one big reason for my prolonged absence from the blogosphere recently). But don't fret: the kids are doing well, and, other than being frazzled by the fact that we have to multitask more than I usually do, we're doing well, too.

We Are Aware of Autism

This probably wasn't always true, though. I think it's a pretty safe bet that, in one of my more ornery moods (which are too common, alas), I was intolerant as the 6 year old melting down in aisle 4 of the grocery store, and condemned his or her parents for not raising him properly/disciplining her effectively/raising him correctly. Back then, I would stare at the kid, glare at the parent, and feel all smug about things.

Those days are gone.

We are lucky insofar as Hallie is not--at least at this point--prone to tantrums (unless, of course, she is asked to eat/somehow takes into her mouth something that triggers some sort of sensory aversive reaction. Then all bets are off). But Hallie has her other behaviors that puts her on the spectrum: she checks out when she is overloaded, or stims (she spins or flaps--although she's learned to pretend to be a bird and says 'tweet tweet' most of the time when she's flapping now) or can't seem to settle herself down. And, even though she does a lot of talking and asking of questions (she is particularly fond right now of asking us "what is that?" where pretty much everything is concerned), her language is peculiar. She clearly has trouble with pragmatics and with following along with things that other people say. She takes much longer than her peers to answer questions or get a statement out. And she cannot filter out ambient noise or visual stimuli and is far more prone to distraction than most nearly four year olds.

We just had a follow up with Hallie's developmental pediatrician earlier this week. There's no question that the enormous effort that we're putting into helping Hallie is paying off: between the Floortime/DIR, hippotherapy, and the extra speech and OT that we're doing, the changes that Hallie has undergone over the past six months have been enormous. Her eye contact is far better than it has ever been, she is beginning to initiate interactions with adults and peers in much more meaningful ways, and she just seems so much more engaged with the rest of the world. We regularly play turn-taking games here at home (and I know that she's doing this at school with her peers, too). And Hallie is grooving on showing us stuff (of course, she'll often grab someone else's artwork and bring it over to me and say something like "Mama, look! Here's my pretty picture!").

But this progress in no way means that she is 'recovered.' I don't want to step into a minefield, but my sense is that those who are autistic can cope but not really 'recover'. Autism isn't a disease so much as it is indicative of a different kind of wiring. Even with neuroplasticity, it's not like her brain can just rewire itself along 'typical' lines; rather, we can help her form associations that allow her to develop mechanisms to cope with some of her sensory difficulties; help her developmentally even if she does it at a different pace and along a different pathway than her neurotypical peers; and even out some of the eccentric edges that she has.

The Developmental Ped that we see was thrilled at Hallie's progress and sees it as a testament of how well Early Intervention can work. And yet she was surer than ever of her diagnosis: Hallie is a high functioning autistic. She always will be. Yet she is capable of great things.

Speaking of great things, here's a picture of Hallie having a very nice lunch with me at the CHOP cafeteria in between her two appointments (pulmonology at 11 and developmental pediatrics at 3pm). Even if she only ate a quarter of a piece of pizza (at most) and took a few sips of her apple juice, she was extremely cooperative and enjoyed sitting at the table with me while I managed to eat about ten bites of my salad:



Insofar as raising Hallie has taught us to be more involved and engaged parents and better advocates for our kids and less likely to take things for granted than we would have otherwise been, we feel grateful for what we have. And yet it sucks. Between our anxiety about the future (will Hallie ever have a real friend? will other kids ever invite her to their parties? will she be able to negotiate elementary school/middle school/high school/college/the real world?), the gearing up for constant fights with insurance/the school district/providers/ourselves when things get hard to handle, and the sheer exhaustion of our daily routine, we're more than personally aware of autism. Add to that the toll that autism takes on us as a family (the things we cannot do or do not do because they are too stressful or we're too tired to contemplate doing them) and the friends we've lost (who were admittedly not worth being friends with in the first place, but still, it sucks when they pull away because your kid is not advanced enough/weird/quite possibly contagious), and you've got quite a bundle.

But the thing of it is this: we're aware of autism because we have to be. What we'd like more than anything else is for folks out there to be aware of autism regardless of whether they are personally touched by autism. So here's what I think: be kind to people. Don't just assume that the meltdowns that a kid is experiencing are a result of the kid being spoiled/badly raised/worth writing off. Rather than standing in judgment, try to put yourself in another parent's shoes and appreciate that something else might be going on there. And try to value people for who they are and not for what you think they should be. And if you do know someone with autism or whose family is touched by autism (or prematurity or some other special need), be nice to them. Offer to help: we don't have a lot of help and we're stressed out and could use some. Even if you don't feel comfortable taking care of the kid with autism, offer to provide the typically developing sibling(s) with a more typical experience than they usually have (remember, they are affected by autism, too, and probably could use a day out by themselves when they get to do typical things and don't always have to tailor their lives and their schedules around their autistic sibling who needs to go to therapy/can't handle the noise and crowds of parks/movies/etc). Or just be a good friend to the parents and listen when they need to rant. Just be aware that autism is part of many families' realities and that they are doing the best job that they can.

OK: I'll come down off my soapbox now. Even with the disruption of Hallie's preschool being closed for spring break and the disruption that this (and Sharon's need to work late several times this week) have posed for Hallie, we've had a great week. The weather today was particularly glorious and so I had the kids out in the park for a bunch of time this morning and they really enjoyed that. Hallie is beginning to get the hang of swinging herself (it's a bit of a work in progress but she's no longer melting down when I don't let her onto the baby swings and she's making some advances in the leg-pumping department). And she had a great time on the slides. Finally, she went up to a little boy named Max and asked to play baseball with him. Admittedly she was more interested in the t-ball setup than the little boy, but that's okay. In my book, just going up to a strange kid and engaging him, rather than grabbing his toy/waiting until he was no longer interested in it and approaching it, is great.

Sisterly Love!

Saturday, on the way down to ARCH for therapeutic riding, Hallie grabbed hold of Lea's hand and held it. And kept holding it.

I hope that Hallie remembers how much she loves Lea the next time Lea grabs her stuff or gets in her way!

On a related note, apparently the horse whom Hallie rides weekly (Sir G.) has a special relationship with Hallie. He is extra gentle and responsive with her (and she is with him...apparently she has a very good 'body sense' of when to shift her weight, when to lift her body to signal him that it's time to trot, etc). Here are a few recent pictures from hippotherapy:






And while Hallie was riding, Lea was playing "nosey" with the horsies:

Monkey Girl

Several times a day, Lea stands beneath the pegs on the wall where the kids' headgear hangs and shrieks a bit, while pointing at the monkey visor on the first peg. She loves this thing and happily dons it herself and walks around the house. We were curious about its attraction to Lea, and this week, we discovered why she has such an affinity for it.

Quite simply put: Lea is a monkey girl.

Her favorite pastimes of late include:

1. climbing into her Fisher Price Ocean Aquarium swing and kicking wildly whilst throwing her body back and forth in order to get up some speed and height. Needless to say, she has neither the capacity nor the volition to strap herself in. Tomorrow, the swing will be folded up and moved down to the basement.

2. climbing into her high chair, where she likewise enjoys kicking her legs. Fortunately, she does know how to get down out of it safely so we don't have to replace our table with a low, Japanese deal and toss out all of the chairs in the house.

3. Climbing into the stroller, standing up while in the stroller, and detaching the bike lights that I have attached to the top of the stroller, on the outside, to increase our visibility in the evenings. Apparently, Lea has noted that "spring ahead" has rendered these obsolete. Do not ask me how she has managed to do this, though. I think she's a bit of a houdini as well as a monkey. And hopefully she's good at slithering on her belly snake-like, too, and will locate the one light that has now gone missing.

And my favorite move:

4. Climbing the stairs to the bathroom. The other night, I went into the kitchen to get her a snack, which involved opening the freezer, taking out an individual serving sized ice cream, and walking back towards the dining room, where I had left her. I was gone perhaps two minutes, if that. When I passed the stairs, I heard someone opening and closing the bathroom door. It wasn't Hallie, who was asleep, and it wasn't Sharon, who was upstairs with her. It was Lea, who grinned her impish grin at me as if to suggest that she had triumphed. Which, of course, she had.

This is why we keep the gate closed, and Lea on our side of it:

An Important Milestone

I don't have time to write a long blog post tonight, but I did not want to let this go un-noted:

For the first time ever, today Hallie went up to another little girl at school and, unprompted, asked her to come play. I am not sure who Stella (the little girl who warranted this advance) but I am pretty darned sure that she is pretty special. Flora, Hallie's aide, was brimming with joy when she informed Nadia of this. And so are we.

Hallie has become very chatty at home and has been initiating play with Lea; her cousins Hannah and Adam; and her friends Taylor and Alex for some time. But now she's exporting her new-found skills as a communicator to the kids at school. I know that they are going to find Hallie's bubbly and silly personality as compelling as we do.

Spring is Here and Change is Everywhere!

Today was another glorious spring day (well, not quite Spring, but almost). Everyone's health is on the mend: Hallie's pneumonia cleared up quite quickly with amoxicillin (thank goodness she is willing to take the capsules mixed into some applesauce); my cold has gotten better; and Sharon is on the mend after having been felled this past weekend by the same cold that prompted Hallie's pneumonia. Lea still has a super runny nose (and hates tissues, which is a pretty awful combination) and a bit of a cough but it sounds considerably better than it did yesterday. She is also teething (I think most of her bottom teeth in the back are poking through), and this cannot be much fun. And all of us seem to have seasonal allergies: mine are responding to lots of zyrtec and Hallie and Lea have non stop nose faucets and sneezing, but nothing that we're too concerned about.

Anyway, the kids got out to the playground on Thursday and Hallie had the opportunity to improve on her already not-half-bad tricycling skills. She has learned to steer fairly well and, while she needs a bit of a push to go uphill, she's doing a nice job of keeping her feet on the pedals. She's graduated from the little pink trike that she rode last year to the one that she received as an (overly optimistic) second birthday present.

Of course, as Hallie does, so does Lea. Lea has been super interested in the trike. At first she wanted to play with its streamers and the door to the little trunk that goes open and shut. But then she got more ambitious ideas:



I suspect that, could her feet reach the pedals, Lea would be riding all over the place right now (which would be fairly hard to do in our debris-strewn and overly-crowded row house, but Lea is never one to be stopped by things that stand in her way).

On Thursday, we also took a late evening walk over to Whole Foods to purchase some more of the kids' most recent favorite snack, which happens to be on sale this week. This is a good thing, because even on sale, they are hideously expensive (2 boxes of 5 little packets for seven dollars).

Hallie and Lea love Amy's organic gummy bunnies. They tried them for the first time today and there's no going back. Unlike traditional gummy fruits, these have 100% of our vitamin C requirements and contain nothing artificial. They are also silky soft and easy to eat. Hallie would prefer to eat the red ones (since they taste like fruit salad to her. This is not something I can wrap my head around because the kid has never eaten fruit salad in her life, but I'm willing to accept it for what it is and move on).

This, of course, opened up the option of gummy vitamins to us, and so I picked up some while I was at Whole Foods yesterday. Even though they are made by the same folks, they are not nearly as complete as the Rainbow Lights Nutristart packets that we currently use -- I presume that this is because they are assuming that kids who can handle gummy vitamins are also eating a broad variety of foods, which Hallie obviously is not. But they do sell gummy veggie supplements, gummy mineral supplements, gummy DHA/RHA supplements, and the like. So I assume that we'll be investing in those nutriceuticals as well. Why eat real food when you can eat gummies, I ask?

After we were done with the store, I had the brilliant idea of calling Sharon, who was still at work (at around 7pm). It was lovely out, and I convinced her to finish up what was doing and meet me for dinner at a new barbecue joint that has opened across from Whole Foods. The setting is informal, there is outdoor seating (which was convenient while Lea was asleep and less convenient when she woke up and Hallie wanted out of the stroller, but we were easily relocated inside) and they had some kid-friendly options (mac and cheese for Lea and white bread and crayons for Hallie; Hallie did not consume the latter). Dinner was not an overly lengthy affair, but it was nice to get out of the house and out in public and I am happy to report that we did not need to evacuate in an emergency, either (those of you unfortunate enough to have had the opportunity to dine with us in years past--and even as recently as this winter when we went out for pizza with Aunt Laura and the cousins--know that dinner outs often end on an unsavory note for us that involves large tips and futile attempts to clean up puke. Last night was not at all like this, and so it falls in the magical category.

Anyway, this is all to say that it's been a nice week and sibling-altercations aside, the kids are super cute.

Here they are modeling some haberdashery that is more sized for Lea than it is for Hallie. (Thank you again, Anne, for the excellent hats and we definitely hope to not have to use them again this season!).



And, finally, Lea is really walking, as you can see in this video (sorry that it's so long):

Fellow Preemie Mom Opens Super Cool Boutique

I know that we're planning on getting Hallie's 4th birthday shirt here:



They have a vast array of super cute baby and kid items. So visit their blog for a fun shopping experience!

Pneumonia Redux

Yup, it's happened again. Hallie was just diagnosed with pneumonia for the second time in three months. This time we did not let things get too bad because we knew what to look for: regular low grade fevers that were getting higher steadily; the cough (which came on a lot quicker this time around); a total eating and drinking strike; lethargy; shallow breathing; and the oh-so tell tale burning sensation that Hallie was feeling by her left shoulder blade.

Sharon brought her into the peds today and Hallie was satting a crappy 95. The fever was controlled with tylenol, but the very careful doctor took one look at Hallie's medical history and sent her right up for a chest xray. The left lobe, and particularly its lower section, was very occluded and looked like crap (I think that's the technical medical term). It was a bit hard to tell if this was what her lung looked like healing from the last bout of pneumonia or whether it was a new bacterial infection that had lodged in her not-quite-healed lung. But given her lack of symptoms for three months and the rapid onset of symptoms between Friday night and today, they have decided that it's most likely a new pneumonia. So as of this evening, Hallie will be back on amoxicillin (capsules dumped in apple sauce) and hopefully that will relieve her awful cough (sounds like she's hacking up a lung, which I suppose she is) and get her back on track.

And so, once more, Hallie quickly managed to gain a tremendous amount of weight (she was 33 lbs 8 ounces two weeks ago, stripped naked) and lose it again even more quickly (today, clothed and in a pull up she was 33 lbs even, so she's probably around 32.5 lbs, max, at this point). We're not so worried about her eating right now (she hasn't eaten in three days pretty much at all) as much as her drinking. Dehydration on top of pneumonia would buy us a nice bed in a shared room in CHOP really quickly. And we definitely prefer the notion of staying home.

Pragmatics

Well, it took several phone calls and a six week wait, but we finally got a copy of the speech evaluation that Hallie had done at CHOP back in mid January.

We think the therapist who did the speech evaluation was quite wonderful (coincidentally she was the same person who did the eval for Hallie back when Hallie was 18 months old and said nothing, so overall she was very impressed with how far Hallie had come). We wish she had room on her schedule for Hallie to see her since we've heard very good things about her capacity to treat kids who are similar to Hallie. But the folks responsible for setting up the evaluation and getting us feedback from it could not have possibly been more disorganized than they were. First, it took about three and a half months to actually get an appointment for an evaluation at CHOP. I called the last day in September, CHOP called me back the first week of November, and set up the appointment for their very first opening, which was late January. The wait itself was maddening, but what was even more maddening was that the scheduler kept changing the appointment on us. She'd regularly call us to cancel the original appointment and say stuff like 'But we just had a cancellation for this morning? can you come over right now?' Of course it proved impossible to drop everything and run to Voorhees, NJ (we couldn't even get in to CHOP's main hospital in Philly for an evaluation---the wait there was interminable). Finally, after much back-and-forth (I think they changed the appointment on us four times) and about nine different phone conversations about insurance coverage, we did manage to find a new slot that actually worked and Sharon brought Hallie in to meet D. Sharon was given a verbal report of part of the evaluation and reported back to me that Hallie was ahead in terms of her expressive language but behind in other respects.

Of course, how behind is the big question, and this is something we could not answer until we got the formal evaluation. And when I opened the thick envelope with the write up last Saturday, I was a bit shocked.

Here's what the final verdict was:

First test: Clinical Evaluation of Language Fundamentals--Preschool (2nd ed) (CELF-P:2)

Average range subtest Scaled Score: 7-13 (mean 10)
Average range Composite Scaled Score: 85-115 (mean=100)
Mean Percentile Rank=50

Hallie's scores:

Subtest: Sentence structure: scaled score 6; percentile rank: 9. Age equivalent: under 3
Subtest: Word Structure: scaled score 6; percentile rank: 9. Age equivalent: under 3
Subtest: Expressive Vocabulary: scaled score 11; percentile rank 63. Age equivalent: 4.2

Core language score: scaled score: 86; percentile rank: 18

Second Test: Comprehensive Assessment of Spoken Language (CASL):

Subtest: Pragmatic judgment: standard score 80 (mean score of 100, average rank is 85-115). percentile rank: 9%. Age equivalent: 2.7

The summary assessment written up by the therapist concluded that "Hallie presented as an adorable girl with a complex medical history for prematurity and a recent diagnosis of High Functioning Autism/Asperger's Syndrome. Hallie's performance on standardized teesting revealed just below-average to average receptive and expressive language skills on standardized testing with difficulties in pragmatic language constructs. Strengths in expressive vocabulary skills were noted. Hallie displayed age-appropriate articulation abilities, representing significant progress. Hallie displayed reduced grammatical/morphological complexity. Comprehension decreased as the length and complexity of the oral message increased. Hallie demonstrated a below-average ability to make pragmatic judgments when provided with social scenarios. Hallie exhibited the pragmatic language functions of labeling, requesting, answering/responding. Hallie also displayed a strong awareness of polite terms during today's assessment. Hallie had difficulty greeting, commenting, and asking for informatio. Hallie demonstrates reduced awareness/use of non-verbal language constructs in social contexts. With respect to voice, vocal hoarseness, breathiness, and a soft vocal intensity were observed."

There's a lot more accompanying verbiage, but what it amounts to is this: Hallie knows a heck of a lot of words, and she more or less uses them appropriately. Her spoken vocabulary is above average, and is equivalent to that of a 4 year and 2 month old. But her comprehension (receptive language), sentence structure, and pragmatics (capacity to use language to communicate) are well below average and land her in the 9th percentile consistently, which means that 91% of kids her age communicate better and can follow along more easily with what is being said much easier than she can. The two go hand in hand from what I can tell: if you have no idea what is going on around you (you are not comprehending the conversations you hear, the instructions you are given, etc), you cannot really communicate with others very well, either because a good half of communication involves listening to others, interpreting what they are saying, and responding to them. So while Hallie absorbs a lot of words (nouns and verbs, in particular, and concrete ones more easily than abstract ones), and is generally using 3 to 6 word sentences with great frequency, she can't really/doesn't really interact with her environment. And given that interaction is less important for Hallie than it is for other kids who are much more engaged with the people in their environment, this seems to me to be a problem that compounds itself--rather than resolves itself--over time.

We are working on helping Hallie build the developmental scaffolding that she needs to interact with others in Floortime but progress is sometimes maddeningly slow. Hallie is still pretty reluctant to do imaginative, pretend play and especially has trouble 'acting out' other characters. She will often set up her doll house family or her Wonder Pets figures in various configurations but is resistant to the idea of having them play out a scenario, for example. And she needs to be able to do these things so that she can understand perspectives outside of her own.

So how are we going to handle all of this, other than panicking (which is of course a strength of mine!)? We just started Hallie in private speech therapy and so hopefully this will help a bit. We are also going to try to get her into a social skills/peer buddy class (preferably the inclusion one run at her preschool in the afternoons). This is one of those expenses that will be completely out of pocket and a bit hard to swing. The ideal would be a three-times-a-week group but we'll settle for once a week if that's all we can swing. We'd love to get a social skills group included in Hallie's upcoming IEP, but we don't have a huge amount of faith that Elwyn is going to give us what we think Hallie needs (even if there are a lot of evaluations that tell them that a social skills groups is appropriate for Hallie). At least, they won't give it to us without a fight is my bet.

The other thing that we are going to begin doing this week is an Integrated Listening program. We are pretty sure that Hallie has Central Auditory Processing Disorder and that this keeps her from making sense of what she hears. Hallie's hearing is fine, but she has trouble filtering out significant sounds from insignificant sounds. At least in part this is because her ears don't coordinate well enough with one another. Integrated listening is supposed to help with sensory integration generally. And we are lucky en0ugh to have a cousin-in-law who is an OT who has lent us her integrated listening materials so that we can give this program a try at home. Hallie loves wearing headphones and is particularly excited about the spiffy new Sennheisers that we've gotten her for this purpose. I'm pretty sure she's the first kid under 4 on the block with her own audiophile headphones.

So we're working on things. But I'd be lying if I said that all of this is not frustrating. Hallie is making a lot of progress. She is beginning to work on her emotions, which is fabulous because she is often more engaged with others than she used to be (even if that also means she's frustrated a lot more and occasionally given to manifesting her aggression by knocking down her little sister or exploring the implications of ramming her play shopping cart into the other kids at school). But we also know how much of a struggle things are for her and how quickly things tend to fall apart , particularly on days when she does not get quite enough sleep, enough food, is having a reaction to something she's eaten, etc.

But we'll keep on keeping on because that's what we do best around here, and we'll try to remember that, even though Hallie is far behind in some respects, she's advanced in others and that, hopefully, the work that we are doing will help her close this gap.

Tunnel of Fun

One of the things that the kids really enjoy doing around here is playing in various pop up structures. We bought Hallie a playhut with several tunnels that she had a great time turning into a ball-and-stuffed-animal pit; the 'house' sadly met its demise, recently, after some particularly active rough housing.

But never fear: we have lots of other play structures that have filled its void.

The favorite ones right now are a collapsible tunnel that we picked up at Gymboree and a pink princess castle that Hallie chose as a post-GI appointment gift at CHOP back in December. The latter requires adult assembly (it is kept standing by a series of complicated tent poles that are a bit of a pain to place in the proper location) but Hallie can grab the tunnel from the place where it's kept (behind our couch in the living room) and open and close it on her own (not that she really ever does voluntarily close it, but she could if she so desired).

Anyway, Hallie and Lea often have a blast chasing each other through the tunnel and Taylor, Renee and Kim's 20 month old, joins in on the fun when she is over for her weekly spaghetti dinner. Indeed, the tunnel chase game began when Hallie started to play "Where is Boo Boo?" Boo Boo is Taylor's nickname) one evening a few weeks ago. This game has now morphed into "Where is Lea?":


Here's a shot of Lea being quite silly:

And here's a cute shot of Hallie and Taylor in the Radio Flyer wagon:
The three girls are so cute and enjoy each other so much. We feel lucky to have Taylor, Renee, and Kim in our lives!