The Apples of My Eyes

Hallie's Very Good Day

Today was Hallie's first day back at school. She was a bit off schedule, to say the very least, and we were worried about how she might fare. Between her recent bout with pneumonia and her late bedtimes, we were pretty sure that waking her up at 7:30am would leave her tired and cranky and less than well disposed towards good behavior at school.

Indeed, getting her out of bed this morning was no easy feat but we managed to do it. Miraculously, (perhaps aided by the fact that her body wants to make up for lost calories and all), she ate a great breakfast of 3/4 a slice of buttered toast and about five ounces of drinkable yogurt and she did not give Sharon a hard time about ingesting her amoxicillin-laced apple sauce (Sharon said that the capsules smelled precisely like the bottle pink goop and were enough to make her gag but Hallie does not seem to mind it, oddly enough).

We were out the door pretty much on time and at school by a bit after 9am. Hallie was excited to jump in the stroller this morning and exclaimed "it's circle time!" when I told her we were going to school and this boded quite well. When we got to school she wriggled out of her snowsuit (it is wicked cold here) and raced up the steps and ran into Miss Flora's arms, said hi to her teachers, and grabbed a seat next to her friend, D., and began her art project.

When I picked her up six hours later, Miss Flora was all smiles. She said that Hallie had had the best day ever: our girl was incredibly vocal all day long (she even sang out loud during music time, which is something that she never does, even though she knows all of the words to all the songs); had initiated interactions with all of her friends (something that I witnessed during pick up time when she stopped to talk to everyone and even asked one dad, "whose daddy are you?" and, when he identified himself, said, "Bye, bye, V.'s daddy!"); had eaten well; napped well; requested that she be taken to the potty and actually used it; let her teachers know what she did and did not want to do, etcetera. She was thrilled to see me and exclaimed "that's my snowsuit!" when she saw it on the hook, requested that I put on her boots but was okay with the fact that we only had shoes at school today, asked for her mittens (never mind that she threw one overboard and lost it on the way home from school), and inquired of me, "where is my stroller?" when she did not see it in the lobby (it was outside in the courtyard).

She continued to be chatty once we got home and then quickly headed off to the pediatrician's office for a follow up to make sure that she is recovering from her pneumonia. She easily complied with the nurse's requests throughout the checkup and we managed to engage in some great Floortime play while we waited for the ped to see her. The ped paid her a supreme compliment when he said that he wished she could teach his kids to behave as well during a checkup: she held out her finger and then thumb for the pulse ox probe; told the ped. that the stethoscope was for "listening to my heart;" removed her own shirt so that the nurse could take her temperature; and the like. And, after each medical intervention, she thanked the practitioner for doing what s/he did. She ended the visit by going over to the nurses' station and requesting her own sticker (something she never does; usually, I have to initiate most requests for her).

Once, at the doctor's office, and then once again tonight at home, Hallie put together two six-word spontaneous sentences. They were so mundane, so completely normal that I cannot even tell you what they were. They were appropriate as heck and utterly inconsequential and yet complex, completely well-conceptualized statements that were entirely intelligible and completely on topic. It's hard for Hallie to string together so many words in a row and she tends to stammer a bit to get them out of her little mouth, but there they were: our first long six word sentences. And I doubt that these were our last ones, too.

All of this was grand in and of its own right. But then, when I looked in Hallie's backpack this evening, I found the following note from her OT, which I am transcribing verbatim:

"If you want to know the definition of joy, you should have seen Hallie at school this morning. Smiles, laughter, participation, and cooperation.

"During free story time before music, Flora asked Hallie to choose a story so she could read it to her friends. This was a wonderful way to get Hallie to not only interact with her peers, but to follow up on my suggestion about spending time looking/talking about the story. Hallie LOVED holding the book so her friends could see, and labeling the pictures.

"During music, Hallie was so happy! She ws the only one who knew a goose says 'honk!' We had a lot of opportunity to work on motor skills -- jumping with 2 feet, balancing on one, and cross patterns like swinging arms and stomping feet."

Hallie helped clean up at school today and at home this evening and asked to go to bed when she was tired (rather than melt down). She literally administered all of her own meds (the amoxicillin apple sauce, the syringes of axid and periactin, and the puffers of flovent) and then cheerfully went upstairs to sleep.

We're not sure why today was such a great day (other than the fact that it was the first day back at school and that Hallie loves school), but we're going to try to remember how good this day was on days that are less good. We're taping the OT's note to the fridge and etching it in our memories (which are nowhere near as good as Hallie's) so that we can look back on this day and smile.

***

Final tally of vomit-free days for 2009: 272
Tally thus far for 2010: 2 (not getting off to a great start, really, but let's face, the pneumonia hasn't helped any).

***

I do promise to get some pictures up in the near future, by the way!

Home!

Hallie busted free this afternoon (with doctor's permission, naturally). She couldn't wait to leave the joint and was thrilled to pack herself into the little red Radio Flyer wagon that she adopted while at CHOP and get the heck off of the 4th floor of the Seashore House. However, when offered the choices of 1. going straight to the car and coming directly home and 2. passing through the CHOP gift shop and getting a balloon (as I noted a few posts ago, we reward our kids for their trauma by buying them something because, as anyone who has ever been to our home already knows, we don't have enough toys and assorted stuff crammed into our tiny space just quite yet), Hallie responded eagerly with a very resolute "BALLOON!" So now we have a 3 foot Dora (a current favorite of Hallie's) residing alongside the still-inflated bouquet of happy face balloons.

Hallie was relieved to see me and Lea and to get comfy here at home. She was also thrilled by her bath today, which was extra long and involved a lot of 'building' of shaving cream towers with the foam soap that Santa left in her stocking. She took a nice long nap, ate some food. This was not much, but, over the course of the day, managed to ingest a slice of bacon, an ounce of her goat cheddar, some french fries and goldfish crackers, and about two bags of cheese puffs that are utterly lacking in nutritional value but do have some calories, three apple juice boxes that helped us keep her hydrated and, most importantly, about 13 ounces of her fortified goat milk. It's been a good week since she's had any goat milk, which is still the mainstay of her diet and contains her multivitamins, and no doubt this, plus the general malaise of fighting pneumonia and the racing metabolism associated with a fever and elevated heart and respiratory rates, account at least in part for the severe drop off in Hallie's weight. According to our home scale, she is a whopping 30 lbs. 6.4 ounces right now, down from about 31 lbs. 8 ounces two weeks ago. She seems to have also grown in stature and is probably about 40 inches tall right now, so she's essentially a string bean. She weighs less than she did last May, which is worrisome to me. But at least she is not refusing her beloved "ba" (bottle) anymore so maybe she'll pick up steam in the eating department soon.

We found out from the doctors that there are no particular restrictions on her activities at this point, so, as long as the fever stays at bay, she'll be able to go back to school on Monday and to her therapies this week. We were also able to celebrate a somewhat belated New Years this evening with our friends Renee and Kim and their daughter Taylor, and this made us and Hallie very, very happy. Taylor, who is 18 months old, adores Hallie and Lea and they feel the same way about her. The kids had a blast crawling through our play tunnel, making music together, and drawing at the easel. They kept each other amused and the four of us were, for the most part, able to have adult conversation and sit at the table while they all played. This is something pretty new for us. Brief interventions were only needed when scuffles broke out over toys; Lea or Taylor wanted to nurse; and when Lea grabbed hold of Hallie's two-bite brownie (Hallie did not mind) and shoved the whole thing in her mouth and made a mess (she had no problem eating the whole thing; she just had lots of chocolate on her face that required fairly extensive clean up).

We did manage to get the amoxicillin powder (from an opened capsule) into Hallie this evening, which is a relief. Hallie experiences sensory vomiting with some medicines, including ibuprofen and all of those nasty pink bubblegum flavored antibiotic suspensions, and we were not sure how she'd do with the powder (which is no doubt bitter), even if it was mixed into applesauce. We did not (and do not) relish the idea of bringing her to the ped's office for daily shots of antibiotic, so let's keep our fingers crossed that she can continue to take her meds this way for the next nine days.

On other, loosely related developments: Hallie is now drawing faces that are pretty darned accurate. A month or two ago, she'd draw a circle for us, but, after the points of her pen or crayon met, she'd continue to go round and round (so that the resulting product would look more scribblish than circlish). Over the past couple of weeks, she has stopped doing this and instead draws a circle and stops when the points meet. She places eyes, nose, and mouth in the proper place (though she does not yet accurately distinguish between a happy smile and sad downturned lips), and will add in ears, chin, hair and a body if this is requested of her. And tonight she drew a very accurate looking sun in the sky when asked to do so. She is also attempting to draw her own hand and asked me to help her turn it into a chicken (I think she meant turkey; this was something I tried to do with her back around Thanksgiving and she expressed no interest in my turkey hand art at that point but clearly remembered that hands can look like various species of fowl). And she loves carrying around her 'notebook' (a little spiral bound notebook I picked up for her at Rite Aid) and writing down 'clues' in it, a la Blue's Clues (another favorite show of hers). It's very cute.

OK--it's super duper late (the kids were both up very late due to massively disrupted schedules that somehow have to right themselves by Sunday evening) so I should end this here but I do promise to talk about Christmas at some point before Valentine's Day!

Ushering in the New Year at CHOP

Sharon took this picture of Hallie just around the time of her admission last night (or early morning, really). It took a while for the nurses to start Hallie's IV so that she can get antibiotics and fluids into her system and then even more time to find a room for her. Hallie and Sharon weren't settled down into their new (and hopefully very temporary) digs until around 4am. As you can see, Hallie was exhausted. She was a great patient though and balked only at the blood pressure cuff and IV stick; otherwise, she was a charming little girl who cooperated with her nurses and doctors throughout the whole process and kept thanking them for doing things like taking her temperature and listening to her heart and lungs.

Meanwhile, back at home, Lea and I found ourselves awake, too. Neither dark quiet time nor a bedtime bath really settled Lea down. She was missing her mommy and interested in going to sleep in her arms (and at her breast), not mine. Finally, some very vigorous rocking did the trick at around 2 am. I collapsed in bed with her, my bottle in the cooler at the bedside ready for when she inevitably woke up seeking out Sharon to nurse. That happened some time between 6 and 7 am and Lea's response to the bottle was none too pleased. When she realized that mama, and not mommy, was in bed with her, she began to thrash and kick and give me a tongue lashing (she makes these very annoyed back-talking sounds --a very guttural and prosodic "rah-rah-rah-rah-rah" that suggest her deep displeasure with you when you don't do something she wants to do or deny her something she wants to have). I whipped out and presented the bottle to her but she was having nothing of it and began to kick me more fiercely. Then I tried to place the bottle in her hands (she likes to hold her own bottle and not have it held for her). She grabbed it and threw it at least a foot. And began to thrash, kick, scream, and backtalk some more. This lasted about fifteen minutes. She then seemed to collapse from exhaustion but in fact was only gathering more steam for the next battle, which lasted just as long. Finally, some time after 7, I managed to shove the binky in her mouth and get her to sleep.

Both Lea and Hallie slept until well past 11 am. The nurses and doctors assessed Hallie while she was asleep and decided that she needed to spend another day and night at CHOP: it seemed imprudent to discharge her because of her oxygen saturation, which was hovering in the lower mid 90s (93-94) and never exceeding 96; needing to make sure Hallie wasn't reacting to the antibiotics she was being administered; and the very real need to ensure that Hallie doesn't get dehydrated (which is especially a problem now that she is refusing to drink her milk entirely and is seriously limited in terms of intake more generally---she looks painfully thin right now). Fortunately, Hallie did not need to be placed on oxygen, but she needed (and continues to need) IV fluids right now.

Sharon did find out that it would be possible to bring Lea over for a visit. I was of two minds about this: on the one hand, Lea missed her sister and needed to nurse (and Sharon needed to nurse her just as much). On the other hand, bringing her to CHOP places her at a greater risk of picking up some yucky bugs (it places Hallie at just as great, if not a greater, risk, too). But we decided to bring her in since we could keep her in the room with Sharon (there's a pretty comfortable bed/couch for parents in the room). So Aunt Renee shuttled us off to CHOP early this evening and we spent a few hours there.

At first Hallie was pretty lethargic and subdued. Renee was worried about this. But after a popsicle, she perked up and we took the kids on a wagon ride through the hospital. The kids had a blast (and particularly enjoyed the relatively fast downhill run in the corridor between the main hospital and the Wood building).

but once 7pm rolled around, Hallie was exhausted and weepy again (this has been the trend the past few days). She was none too thrilled about eating her dinner and managed only to get in a couple of bites of fish stick, a slice of apple, one fry, and four sips of apple juice. (Lea, in contrast, happily ate a bunch of food, of course). She quickly began to lose it, so Renee, Lea, and I headed home. An hour later, Hallie was up and crying for me. This broke my heart. She was inconsolable and, as of my last conversation with Sharon at midnight, remained so.

Lea slept happily for a couple of hours and is now awake again. I fed her some more food (the kid can eat), another 6 ounces of bottle, and changed her diaper and got her into jammies. And as soon as this is done and posted (in a matter of seconds), I'm going to try to get her down again. Anything short of 2am will be a victory, of sorts.

So this has ended up being a very different way of ushering in 2010 than anyone ever expected, but hopefully things improve from here.

I hope everyone out there reading this had a happier new year celebration and wish you all health, peace, and love in 2010.

Hospitalized

Well, they don't like what they see or hear (her left lung looks pretty bad) and want to keep Hallie at CHOP for at least 24 hours. They suspect it's a bacterial infection and have started her on IV antibiotics. Her pulse ox is hovering around 95, as long as she is not crying, and then it's in the 80s. Unfortunately, the sound of the monitor beeping is all too resonant for her and scares her, so she was whimpering in the background while Sharon updated me on Hallie's status. Come to think of it, monitors scare me, too.

I can't believe that Hallie gets to usher in the New Year in the hospital. Poor kid.

Out with a Bang....

Hallie had a very nice Christmas eve and day with her cousins (more about this later, I hope) and a lovely time with Eliza Grace on Boxing Day (which extended Christmas for the two of them...both are entirely enamored of opening presents...She is still asking us to "do Chanukah" every night because that means more presents to open). Sadly, though, she came down with a fever while at Eliza's Nana's house (we didn't know this until we got home; the condo was warm and the oven was on and so it didn't seem so concerning that Hallie was flushed but, in retrospect, flushed=fever in Hallie's world). She cried and vomited in the car on the way home from the greater Princeton area and was clearly sick by Sunday morning. She ran a pretty high fever all day on Sunday, topping out at a troubling 104 F + (we take her temperature under her arm and axillary temps are none too reliable). We called the after hours practice and the very cautious doctor on call (whom we like a lot) had us bring her into the ER at CHOP. It seemed like a garden variety viral infection to the ER docs and so, as long as she could stay hydrated (and she could, since the vomiting was not persistent), she was free to go. Monday was more of the same. Tuesday she seemed better by the afternoon and had not been running a fever all day but the fever had returned by the evening, though less virulently than it presented the day before. Today, Wednesday, she seemed totally normal and so the virus seemed to have abated. She even wanted to eat (ate about a slice of bacon and a slice of buttered toast, which is more than she's consumed the past three days combined). So the worst was over...

...or so we thought. Tonight the fever returned. Our axillary reading (100.7) was lower than what her fever turned out to be (at least a couple hours later, when it read 104, rectally, at CHOP). But more troublesome was her grey/blue ashen color, which seemed very off to me, and her rapid, labored breathing. We called the after hours practice and the nurse had us count her respiratory rate. Over 40 breaths per minute is troublesome; Hallie was at 57 by our reckoning. So Sharon brought her back in. At triage, her pulse ox was reading 90-92 and never went above 95. Her chest sounded 'squeaky'. And her heart rate was over 160.

Of course, Hallie, being Hallie, was a charming patient who was very engaged with her doctors and nurses and teasing and playing with them. She has a bit of an appetite, so she ate a saltine and at last update was working on a graham cracker. She acted fine. But her chest xray indicates otherwise.

The upshot: pneumonia.

They are trying to figure out whether she gets to stay at CHOP for New Years Eve (oh joy!) or come home and recuperate here. I haven't heard anything from Sharon for a bit, but my sense is that it will depend on whether she needs to receive any oxygen therapy (or at least be in close range of nasal cannula...what a horrific thought, given that she came off the Os 3 years ago now).

So 2009 is going out with a bang. And not a festive one, either.

All About Lea

Suddenly, over the past couple of months (and particularly over the past few weeks), Lea's spitfire personality has emerged full force. She was always a spirited baby who made her needs known to us -- for instance, we've known for quite some time that she doesn't really enjoy sleeping as much as she enjoys playing and being in the thick of things, and that she's very determined to do things in her own way. But, recently, we've discovered that Lea is a very, very good communicator.

A couple of examples: When Lea likes something and wants it, she clucks like a duck. It's sort of amazing to hear. If you don't give her the desired item (usually food or drink), she'll start clucking louder and faster and also reaching for whatever it is that she wants. When Lea wants to do something, she'll also let us know what it is quite effectively. If she wants to get into her swing (usually to chill out with a bottle of formula or her new favorite beverage, Yo Baby drinkable peach flavored yogurt), she will crawl over to the swing, pull to stand, and begin to swing the swing back and forth. If she wants her diaper changed, she will crawl over to the diaper pad, grab the wipes, or, if there is a diaper in her reach, she'll grab that and bring it over to you, waving it until you get the message.

Lea is also a highly skilled baby who learns new stuff quite quickly. This past week, after I showed her how to use her walker to get around, she began to walk around the room using her walker, which she thinks is great fun.

When I showed her how to stack two blocks on top of one another, she mimicked my moves very effectively. And she knows that socks and shoes belong on her feet and sweaters on her torso and tries quite hard to get them on and in the right place. She doesn't quite have the fine motor skills to perform these tasks, but that doesn't stop her from trying. And, like Hallie, she seems eager to try on everyone's shoes and not just her own and even said the word "shoe" today while trying to put on one of Hallie's.

Lea always keeps an eye on what Hallie is doing and wants to do it, too. So she often pulls to stand at the easel and attempts to draw; grabs Hallie's cars and trains and wants to play with them too; and will get in the middle of our puzzling, castle-building, and game-playing quite reliably. Hallie is almost always happy to play with Lea and often initiates games of "more silly" with Lea, but isn't always thrilled to share her toys, especially when she's doing a puzzle or building a structure and continually admonishes her sister quite emphatically, "No, Lea! That's my toy!"

Lea also keeps an eye on Zen and adores him. Zen is a great cat and puts up with all of Lea's attention, which not only involves gentle patting but some eager swatting and pulling. Lea is equally enamored with Zen's stuff. We have to watch her like a hawk or she'll end up grabbing food out of his bowl, playing in his water, or lying in his bed. (Truth be told, though, Zen doesn't really use his bed--he prefers the dining room table--so we're not too vigilant about this). Here's a cute shot of Lea curled up in the cat bed:

Lea remains an adventurous eater who is willing to try most new foods presented to her but, like Hallie, seems to prefer snacking to eating a full meal. We're not too concerned about this just yet because Lea tends to drink a lot of milk, formula, and yogurt and is growing quite effortlessly. And, in contrast to Hallie, Lea is an adventurous eater who will try (and often like) pretty much everything we offer her, especially if it comes from our plate. She and I often share a snack of hummus and pita and, the other night, she tried and loved smoked gouda; horseradish cheddar cheese and crackers; and crab and avocado dip. Veggies liked peas, carrots, and green beans are some of her favorites and she will cluck furiously for Earth's Best pear and mango whenever I'm giving Hallie her prilosec, which is often mixed into this fruit puree. We've started giving her a fruit snack at the same time to stave off the clucking, which otherwise escalates into whining. Of course, she also clucks for wine, which we are less indulgent about! We do hope that Lea begins to eat more at any one sitting so that her tummy is full and so that she eventually replaces her liquid (breast milk and formula) consumption with solids, but she is still under a year old so we're not going to push her to eat a full solid meal just yet.

Amazingly, however, we never had to push her to learn how to use a straw. Hallie showed her once, about five months ago, and Lea picked up this skill immediately. Here she's chilling with her Yo Baby treat:

We did have a bit of a medical scare with Lea last month but are hoping that all's well that ends well. Lea often seemed to us to run warm and her head was nearly always a bit hot, but she did not seem feverish so we merely attributed this to her being an extra sweaty baby and attributed her slight temperature elevation to continual teething (Lea now has six very sharp, big teeth and more on the way). But when she began to have trouble going to sleep and staying asleep and then started being very cranky, we grew a little more concerned. Like Hallie, she seems to have a perpetual runny nose (we blame preschool for this) and so we thought she had a cold on top of teething. But after she began spiking high temps--her highest was 104.5 but she'd been running around 102 or 103 for a 24 hour period. Tylenol or Motrin brought it down to about 100 but she was clearly not doing great. On top of this, Lea was refusing to eat and drink and I was worried that she was beginning to get dehydrated. Finally, I noticed that her pee smelled off, I began to worry about Lea having a urinary tract infection (UTI). She is at high risk of these because of labial adhesions (sorry about revealing too much information here) and so we brought her into the ped's office two Fridays ago to check out the situation. Of course, it's not possible for babies to pee into a cup, so getting a urine sample from Lea was a pretty traumatic affair that involved taping a plastic bag to her, which failed miserably, followed by two failed attempts to catheterize her (her anatomy made this hard), followed by sending us home two hours later with another bag attached to her. This, combined with Sharon coming home early from work to nurse Lea, finally yielded the necessary pee, which Sharon raced over to our excellent pediatrician's office just before they closed on Friday evening. One dip stick later and Lea was confirmed as having a raging UTI. They started her on antibiotics immediately (about which she was none too pleased; unlike Hallie, who, thankfully, is great about taking medicine, Lea is never happy about this at all and even fights things that taste relatively good like Tylenol).

Unfortunately, Lea did not appear to improve much on Saturday and remained reluctant to eat and slept away the day while Sharon and Hallie went to hippotherapy and then to a Chanukah party at Grandma Sandy's and Poppy Jack's. While she did seem better on Saturday evening, she was still running a low grade fever on Sunday and so, as per the recommendation of our ped's office, we took her in to the ER at CHOP on Sunday. I stayed home with Hallie while Grammy and Sharon brought her to the hospital (since there was no use exposing Hallie to a long wait and lots of germs in the hospital). There they confirmed that the original antibiotics were not ideal based upon the culture that had just come back and started her on a different antibiotic, which seems to have done the trick.

The big questions, however, were whether this was a chronic UTI that had caused kidney damage and whether Lea was experiencing bladder reflux. To figure out all of this required yet more testing, which Sharon and I completed last Tuesday. Fortunately, we can rule out those problems.

Still, Lea had been through a lot and she deserved a cheerful pick me up. It's long been our tradition that, if Hallie ends up at CHOP for something other than routine specialist care, we buy her a little gift to reward her for putting her through the wringer. Unfortunately, Sharon was unable to visit the gift shop after the ER but we made sure to get her a present after her testing was completed. Here's Lea playing with her smiley face balloon bouquet:

She is quite the little character and now that she's feeling better, she's even more of one. I am sure that, once she begins to walk, Lea will definitely give us a run for our money.

I'm still working on a Christmas post, so check back soon!

Social Stories and the Importance of Experiencing Rituals

Chanukah is behind us and Christmas is right around the corner. We are a sort-of hybrid family: I was raised in the Orthodox Jewish tradition but have always loved the holiday decorations we were never permitted to have; hence, I am a big fan of Christmas trees, jack-o-lanterns and spooky spiders, and could be easily convinced to array our home in turkeys and bunny rabbits, too. Sharon is a 'mutt' (her phrasing, not mine) whose ancestors include Ukrainian Jews, Anabaptists from Germany, and Catholics from Ireland. Her dad was raised Protestant (his family was not a big fan of either Jews or Catholics); her mom was raised Catholic but by a Jewish mother who never converted; and she and her sister attended Catholic school as kids, celebrated Chanukah and Passover with their Jewish cousins as kids and Christmas at home, and both now identify as Jewish but this is more of a cultural (read: food) identity than a purely religious one. Anyway, since holiday traditions are important to the family, we are interested in sharing these with our children.

The sticky part is that children on the spectrum (or at least Hallie; as the old adage goes, if you know one autistic person, you know one autistic person) don't always 'get it' when you discuss traditions with them. Indeed, it's sometimes unclear to us what Hallie understands when we tell her stuff. She is clearly bright, and she clearly knows so much (to recap again, well before she turned two she identified all letters of the alphabet; could match colors and shapes and identify them by name--though not speak their names; could count to twenty (some of her first words were numbers); and is okay with following simple directions when you ask her to do something tangible (as long as she 'hears' you and doesn't get distracted). But she has auditory processing issues, is a visual learner, and most likely has some variety of Semantic Pragmatic Language Disorder. She still cannot answer simple questions effectively and it's not clear that she gets abstract concepts at all. So, for example, if you ask Hallie what her favorite color is, she'll just tell you what color she is wearing that day. And, if you have just explained to her the entire Santa story (Santa brings toys for good girls and boys; he comes down the chimney on a sleigh that is pulled by reindeers; he eats cookies and milk; and he leaves the presents under the tree) she might a. bring you a stuffed Santa; b. bring you a stuffed reindeer; c. point to the Christmas tree in our living room and say "My tree! I love my tree!" and d. unwrap a present if you are unwise enough to have one under the tree already.

What she will not do is put it all together. So, if you ask her, 'who pulls Santa's sleigh?' she'll echo "Santa!" If you ask her what she wants Santa to bring her, she'll answer "Christmas!" She makes connections, and she knows all the words ('present' is a favorite of hers and she loves opening packages and boxes and thinks that all of their contents are hers), but she has no sense of how these things work together and cannot grasp the abstract concept of the Santa Claus story. I suppose that this means that she will avoid the trauma of finding out that none of this is real and that mommy and mama ate all the cookies, but the problem is that we so want her to believe. This is a rite of childhood, of innocence.

I talked with her preschool teacher about this last week. Kristen brought it up with me, and not the other way around. She had the kids make some reindeer food for Rudolph & co. and Hallie had a great time playing in the oatmeal. But she had no idea what she was doing. And both of us sensed that this is a global problem, not a localized, reindeer-related one. She happily and cheerfully follows directions and transitions beautifully from one activity to the next; she loves doing what the other kids are doing during group activities and is an avid listener to stories during circle time. But she has no idea why she is doing what she is doing; she merely goes with the flow because this is what is expected of her and Hallie, if nothing else, is an aspirant teachers' pet who would like to make a good impression (except for when she wants to test her limits with us, her moms, or with Miss Flaura, her guardian angel/PCA at school). But we would like her to understand what she is doing, and not just do it.

Not understanding stuff often leads to sensory overload for Hallie once an activity is no longer quite so structured. For example, she loves music time at school beyond imaginable belief and knows all the words to songs and will sing them when she is comfortable. But she has no idea that they are planning to have the kids perform Christmas songs at the church where preschool is located in front of an audience of all the kids' families and that there is a Christmas pageant followed by a dinner. I am sure that this has been explained to all the kids, but Hallie cannot process this information. So, on Tuesday night, when this event happens, she will once more come un-moored and look for some corner in which to hide.

How do we deal with this as parents? The only thing that I think can work is constructing a very concrete social story for Hallie and using her peers (props, I suppose) to act this stuff out. I have been telling her about the performance, but I know she isn't understanding me. On Monday, should school not be canceled due to snow, I will walk her to the church where the performance will be, and will show her the dais, and have her go up on it, and will sing a couple of the songs with her there (we have a list of songs provided to us parents in the preschool family newsletter and they're pretty standard fare). I will talk to her teachers and Miss Flaura about the need to explain this social story to her, too. Maybe, if things are concrete enough (she will have been in the church, on the stage, singing) she will feel less lost this time around and won't be quite as overwhelmed as she was at the Summer Camp musical and the Hallowe'en costume parade).

Enacting the Santa ritual will be harder. It would be most helpful to be at our own home and show it to her, preferably in the company of a couple of other children who already know what they are doing, so that she has a body memory of this event. That's what really helped with Halloween. While the teachers had been talking about Halloween and had the kids make various holiday-themed crafts (they picked and decorated their own pumpkins and fashioned jack-o-lanterns out of paper bags and orange paint and spiders out of egg cartons and pipe cleaners) and had the kids parade around in costume, the significance of all of this eluded Hallie who just thought of these as regular old craft making/art and pretend play. What really worked for her was having Eliza Grace here and experiencing the magic of getting into costume and trick-or-treating alongside the other kids on our block, who were similarly decked out. That made things real for Hallie and lent them significance, and she continued to talk (in her own word-economizing fashion) about trick-or-treating with Eliza Grace for weeks after the event.

We'd love to replicate this sort of body memory production where Christmas is concerned but we don't have other kids with whom we can do this. It is kind of socially unacceptable to lure a couple of Santa-believing children to our home with promises of presents provided to them on Christmas morning just so we can make this part of things come alive for Hallie. Lea is obviously far too young to understand anything right now, though I suspect that, later on in life, Lea will probably do a lot of translating of ritual and abstraction for her big sister. And Christmas is one of those holidays where it is difficult to get people to alter their particular family practices, particularly when no one quite understands that your child, who is on the autism spectrum, isn't going to just figure this stuff out for herself because, after all, the other 99% of all children have done so with no special parental effort.

It's sometimes hard to be a parent of a kid who doesn't quite fit in to the typical world. It makes you empathize with your kid on the spectrum: it's a weird world out there with a ton of social codes and rituals that seem odd and that moves at a very fast pace. Figuring out how to slow this down and make sense of it for your child so that they can mind meaning in this bizarre universe is our job as Hallie's parents. We'll figure something out; Sharon and I always do. But there's no question that it could be, and should be, easier.

Let it Snow, Let it Snow, Let it Snow!!!!

I'm not sure whether it's officially being called a blizzard, but, over the past 24 hours, Philadelphia did receive the largest amount of snow in a single event in December since 1909. According to the official sources, there's 16 inches of the white stuff on the ground at the airport. (***EDITED: The official snowfall now is over 22 inches and this is now the biggest December storm on record, surpassing the aforementioned 1909 one by about an inch).

By the time the kids woke up this morning at 9am, we had at least four inches of the stuff. Hallie was thrilled and came running to me announcing "It's snowing!" This is the first time, I think, that we've had enough snow for it to have actually made an impression on her. Last year, we had hardly any at all. And, while I took her outside while it was flurrying a few weeks ago, nothing stuck and she found it kind of a non-event (which it was).

We monitored the situation over a lazy breakfast (half a piece of toast for Hallie and homemade blueberry pancakes for Sharon and me....Lea grazed on all sorts of stuff) and then, fortified with a couple of cups of coffee, I went out to shovel. Hallie wasn't interested in staying behind, so she decided to help me:

Karina was outside, too, helping with snow removal from her parents' car by eating it, as well as shoveling it, and the two kids had a fun time making snow angels:

Hallie was out for a good forty five minutes enjoying the snow event. By the end, her cheeks matched her snowsuit:

Had she been willing to try some hot chocolate, this would have been the perfect time for it!!! Hallie, being Hallie, settled for removing her cold wet clothing and warming up with a bowl of cheerios instead. By all accounts, she had a great time.

Lea did not make it outside today, but this is what she looked like all bundled up for our trip to pick up Hallie from preschool yesterday:

She had on a oneside, fleece pants and a jacket, a fleece snowsuit, and her quilted snowsuit. Needless to say, she was too bundled up to move. We kept her in today because 1. she doesn't have real boots; 2. she isn't walking yet and cruising while sinking into snow that came up to her chest didn't sound terribly pleasant; and 3. crawling in 8-10 inches of snow really isn't an option. She will have to go outside in it on Monday when we venture forth to get her a whole series of medical tests (this deserves a post in its own right, but she's been plagued with a miserable UTI which likely accounts for the crying, moaning, and lack of sleep that we experienced last month) so she'll get to see the snow even if she doesn't get to shovel it or eat it.

Provided that there is sufficient moisture in the snow (it's very cold out--was in the 20s all day--and the snow was quite dry), we're going to try to make a snowman in the morning. That is, after I shovel yet again!

Real Super Heroes Wear Tights

Spider Man Legs: that's what Hallie calls tights.

Since both Sharon and I kind of hate tights, we never dreamed of tormenting her by forcing her to wear them and instead have been buying Hallie cute leggings to wear under dresses and skirts. Thus, we had no idea that Hallie adored wearing tights until Saturday, when we put her in a pair of brick red tights in honor of her annual holiday card photo shoot. She was very excited by her "Spider Man legs" and insisted on wearing them all day, even when we changed her back out of her dress. (She was just as excited by her new black patent leather shoes, which amazingly took us all of ten minutes to purchase at Olly's on the way to the picture taking appointment. Even once she gave up her tights, she continued to wear her black shoes and could be seen prancing through our house in nothing but black patent leather shoes and a pull up late into the evening. We both sense that she would have been happy to give up the pull up, too).

Anyway, back to the Spider Man Legs: neither of us could figure out why Hallie was calling tights by this name until it dawned on us: Real super heroes wear tights. Now if only I could convince Hallie that they also eat quiche....

Candy Cane Kids

Here's a picture of Hallie and Lea getting into the holiday spirit. Sadly, Lea is grimacing because her first year molars are coming in (this would also account for the bags under her eyes). And Hallie may look like she is making a silly face but what she's really doing is saying "Cheese." She does this a lot now during picture taking, which is why her mouth always seems askew.

Happy Holiday Season everyone!

Lea as Narcissus

Amazed and Surprised: Feeding Psychology and Who is Really in Control

Sometimes Hallie does stuff that we find confounding, in a good way. It then becomes clear to us how on the ball she really is, how much she follows even when it's not clear that she's listening, and how smart she is. Here's what happened:

Yesterday, we trekked over to CHOP for our first real session with the psychologist who is part of the Feeding Team. We're always a bit conflicted about the feeding stuff since we never really seem to get very far before we hit another roadblock but we were heartened that the psychologist listened to us when we met with her a couple of weeks ago to go over Hallie's case and figure out some sort of strategy. Our aim was to take it slow (always a good thing in our book since shock tactics backfire terribly around here); use a behavioral approach but one that did not involve force feeding, which is something with which neither of us are comfortable; and, most importantly, create a ritual around eating for Hallie that she could assimilate and then work from there to advance family mealtimes. Rituals really work for Hallie--she likes routines a lot and, while she's never prone to tantrums when routines are disrupted, we do know that whenever we switch things up on her, she tends to withdraw more into herself because she gets overloaded. We absolutely hate it when Hallie shuts down for all of the pretty obvious reasons.

Anyway, the plan was to begin with a snack at the table that did not involve television. We've used TV as a mealtime distraction/reward for pretty much as long as Hallie has been "eating" solids. We find it disruptive and, in the end, counterproductive. Ultimately, we'd like to get away from using it this way even if Hallie does a pretty good job, for her, of eating OK meals while wandering around watching the Wonder Pets and Yo Gabba Gabba. We don't envision living a life where everyone eats meals in front of the TV and TV-watching, while pretty interactive in our world, tends to be anti-social and the last thing we want to do is to stoke Hallie's already proclivity toward preferring electronic friends to real life interaction. Still, the psychologist understood why we can't afford to go 'cold turkey' and change everything up at once. The last time we did this with feeding, when we insisted that Hallie eat at the table and gave her the power to decide how much and whether she ate, Hallie responded by going on a full-fledged eating strike. She's eating pretty well right now and we don't really want to disrupt that entirely.

So we got to the doctor's office, after learning that Hallie grew another quarter inch in the last two weeks but lost about 4 ounces---we're not too concerned with this because she was, after all, pretty sick for about a week and her weight, 31 lbs. 11.5 ounces, and especially her height, which is 39.75 inches, are quite good. I pulled out the preferred snack--a small slice of chocolate cake--and the psychologist plated it up. She told Hallie what was happening: that she was going to sit and take a bite and then get to play with a toy. That if she did not take a bite herself, that V. would help her. And then she'd get to play. And that if she didn't take a bite at all, she would not get to play." Hallie, who is in a hungry phase right now (she seems to compensate for illness-related weight loss by experiencing a burst of hunger that helps her make up those calories she's lost), grabbed the fork and fed herself a bite of cake. Then she played for 30 seconds. And then repeated this process, quite happily and without a shred of protest, another nine times. That was it. The process was over in about fifteen minutes and then the psychologist and I went over the "rules" and how the goals of the process was a. to reinforce that we are in charge; b. get her comfortable with the ritual and craving it (or at least the playing between bites even if not the cake itself); and c. to ultimately generalize from this to bigger things, like getting Hallie to eat non-preferred foods, or more foods, or meals, or whatever we decide we want to do.

One critical feature is that, during this process, whoever is feeding Hallie needs to be able to devote complete attention to her and to the process so that it is basically the same all the time. This is awfully hard to do when one parent is watching both kids, but the reality is that Sharon gets home a bit too late for the snack to be successful once there are two parents in the room. Sharon and I talked over this whole issue on the phone this afternoon and we decided that, around 6:30, immediately upon Sharon's arrival home and after Hallie had already eaten something for dinner, we'd do the cake snack ritual thing.

Well, apparently, Hallie wasn't going to let us take complete charge of the situation. Around 6 o'clock or so, she went up to her high chair at the table and said to me, "Chocolate cake please mama!" Fortunately, Lea was in her swing (during an abortive attempt at a nap) and I was able to drop what I was doing and slice off a piece of cake for Hallie. I recited the rules to Hallie, who was eyeing the cake the entire time and who gobbled up that first piece very fast. Then she played for 30 seconds, handed the toy back to me, ate the next bite of cake, and repeated the process for seven bites. It took a bit -- but just a bit -- of prodding to get her to eat bites eight and nine, but she returned to her eager eater self for bite number ten when I told her that she was "taking the last bite." And that was it. Ten minutes or less from start to finish.

I have no idea how it will go tomorrow or the next day or whenever Hallie returns to her non-eating self.

But what was clear to us is how much she understood of the process and what the expectations we had for her were. It's also clear to us that we need to give her more credit (and be careful what we say around her) because she really does take everything in. And it was also clear to us that, even though this is supposed to be our ritual, our super smart three year old is really the one who is in charge. This doesn't surprise me in the least. And Hallie being in charge is part of the solution, yet also part of the problem.

***

For those still counting, we are up to 253 vomit free days and hope to make it to the 270s this year. Thanksgiving complicated matters: Hallie went to bed with the beginnings of laryngitis on Thanksgiving eve and woke up with a fever on the big day itself. She was very sick all day, which led to two bouts of vomiting and lots of lying on the couch lethargically all day on Thursday and Friday. By Saturday afternoon she was on the mend and, other than a residual cough, she's fine now. I had the same thing, without the vomiting, earlier in the week so I felt a particular sense of empathy for Hallie. This was a short lived but miserable little cold and I know that I wanted to consume nothing but tea and soup all week. Given all of this, we stayed home on Thanksgiving (we are thankful for Whole Foods which was open until 1pm and provided Sharon and me with turkey and all the trimmings at the last minute). Sadly, we missed out on fun times with cousins, but it's better to have spared them this malady and clearly Hallie wasn't really up to playing anyway. Ultimately, we are thankful that Hallie weathers these little colds so well. It will never cease to surprise us, or her doctors, that Hallie's lungs are as strong as they are.

OK--off to bed. Gotta get up early so that we can go find some shoes for the girls (Lea needs to graduate from Robeez to something that doesn't leave indentations in her little fat feet) in preparation for the holiday card pictures we plan on taking tomorrow.

Zen

This past weekend, we decided that it was time to add to our family. Sharon and I had been eager to get the girls a cat for some time now and the virtues of this decision were underscored by the absolutely fabulous time that they--and epecially Lea--had when chasing around Aunt Laura and Uncle Bryan's cat, Rocky.

Anyway, two weekends ago Sharon and the girls visited a shelter to see a couple of cats and none of them were terribly impressed. This probably wasn't the cats' fault; it's hard to tell what a cat's personality might be like when it's cooped up in a cage all of the time.

After that unfruitful effort, we decided to try to find a kitty that had been foster-cared. This was pretty easy to do. So, Saturday night, after it was clear that Hallie was on the mend (she had fallen ill with the laryngitis/fever virus that had struck me earlier in the week), we took a drive over to the Art Museum area to visit a woman who fosters quite a few cats (she is living with 15 right now, and three of them are hers). All of the cats scattered except for one: a pretty black boy cat who is about a year old. He followed us from room to room and seemed quite happy with us, despite Lea's over-eager overtures. The other cats were quite lovely, but this little black one was special. He had chosen us.

So, not an hour later, we ended up taking him home. The name he had in foster care was Nelson, but his new name, Zen, fits him so much better. He's been living with us for the better part of a week now and seems quite content here. He is the gentlest, most easy going cat you can imagine. And this is a good thing because Lea is neither of those things. She can't get enough of Zen and relentlessly follows him from space to space, intoning "Kitty!" the entire time. She loves to smooch with him, lay her head down on his tummy, and cuddle up with him. He basically tolerates all of this (and when he's had enough, he lets Lea know with a playful swat that has yet to lead her to incur substantial damage). Lea also loves his food and water bowls and is hearing a lot of stern "No, Lea, NOs" these days.

Hallie loves the idea of Zen but is much more cautious around him than her younger sister is. Zen likes to come up to Hallie and rub against her leg. When he does this, Hallie says "I sorry, Zen! Excuse me!" This is totally cute. But Hallie is warming up to him and trying to pet him (gingerly). And she was completely thrilled to give him catnip this morning and watch him go completely crazy for it.

Anyway, Zen is part of our family now and we love having him here. Welcome to our nutty world, Zenny!

Thankful

I think we're thankful every day for such wonderful kids who bring such joy to our lives (even if they also keep the producers of hair color in business, too), but we often don't take the time to stop and reflect on what we have and how grateful we are for it. So, even though it's pretty late, I just wanted to take a moment to reflect on all of the wonderful things that are happening around here and how thankful I am about them.

Hallie has been having a great week. Probably a lot of the 'off' stuff that we were seeing a couple of weeks ago was related to her coming down with a cold/fever, and not regression or anything ASD-related at all. This makes a lot of sense; I know that I don't function well and am out of sorts when I feel like crap (which I did this week, when I came down with my own cold/fever/laryngitis/sinus infection malady; let's hope Hallie isn't getting it). Anyway, once Hallie started feeling better, things really began coming together for her again.

Last Friday, Sharon and I had our first ever parent-teacher conference with Hallie's lead teacher, Ms. Kristen. I've gotten to know Kristen, as well as the other teachers, fairly well over the past five months and, of course, I'm in constant dialogue with Hallie's therapists, but this was our first sit down, official conference. Kristen had nothing but glowing things to say about Hallie: she finds her energetic (in an infectious, good way; when she comes in for her two afternoon days at 3:15, she appears to recharge the batteries of those kids who have been at school since early in the morning and whose energy is flagging); helpful (she loves to give out instruments to the other kids, collect trash, and is a masterful cleaner-upper); and polite. She also loves art and music and eagerly participates in story time, circle time, and all group activities. Apparently, her fine motor skills are improving and she's doing a ton of talking. While some of what she is saying is echolalic, this is true of several of the kids (who are not diagnosed with anything) and it's clear that Hallie comprehends and is following what's going on around her. She is also quite enamored of dramatic play (dress up) and is beginning to interact more with the other kids. She knows all of their names and greets them all by name, but she's now beginning to do more than this.

We know that the other kids really like her and that several of them ask after her each day, hoping that Hallie will be in class with them (she has an odd schedule which we adults find hard to follow; I can only imagine it's more difficult for the three year old set to recall which of Hallie's days are full days and which are part days).

Most importantly, Hallie is happy at school. She's adjusted really well, has not cried about going to school since at least some time in August and never wants to leave. Indeed, for the past week or so, whenever I come to pick her up, she happily shows me whatever toys she's been playing with and then sits back down to play some more.

Anyway, it was great to hear all of this. Now that Hallie is back to her normal self, we can see how good of a fit the YCCA is for her. That they emphasize music, art, and sensory activities and use those to teach academic skills seems great to us. Hallie has all of the academic stuff that she needs at this age down pat; we are thrilled that they are not drilling letters, numbers, reading, and such at school but instead focus on things like movement therapy, playing with textures, and teaching the kids a lot about music.

We think that all of this exposure to the social world of typical kids is really helping Hallie to advance her play skills. First, she is doing a lot more interacting with the other kids on the playground after school. When I picked her up last Friday, she asked to go to the playground (she's been doing this often) and of course I was thrilled. As usual, she swung a bit. But unlike in the past, when Hallie's made a beeline for the baby swings, this time she walked up to the 'big girl' swing and asked me to help her up. She then told me, "I swing on big girl swings!" and did just that. She's beginning to kick a bit, which is great, since I think her capacity to pump her legs is beginning to emerge.

Then, her friend Daria came over, and, after swinging a bit, asked Hallie to play with her. This time Hallie didn't ignore the request; she told me she was all done swinging and she happily joined Daria and Logan (a boy at her school) in a game of chase. She also went up to Logan and asked him if she could have one of his pretzels. Here are a couple of shots of the kids at play:

We're not just seeing progress in the area of playground skills, either. Hallie is also beginning to do a lot more real, functional, creative play. For example, last night she was building with her wooden blocks. Instead of just building a tower and knocking it down, over and over, Hallie built a couple of houses that looked like houses. I wish I had gotten a few shots of these. They were cool looking. Sharon, who is an architect, was quite impressed. Likewise, she's been using her Mr. Potato Head much more appropriately. Instead of having arms coming out of all of the holes, octopus-style, she made this lovely creature the other night:

Other than the fact that the guy was wearing lips as a cap, I'd say this was a pretty appropriate potato head.

Hallie's also been drawing with purpose, even if her creations don't really resemble what she says they are. She has been into Blues Clues lately, so I've given her one of my old notebooks. Tonight, she drew a couple of renderings of something that she called Spider Man and narrated her drawing for me as she made it. "Here are the eyes," she said, "and here is his nose and mouth. These are his legs. I draw Spiderman!" She was very proud of her drawing, and so was I.

But perhaps most important is that her pretend play skills are developing rapidly. Tonight, while Sharon was out standing in a really awful line at the UPS pick up center waiting to get a couple of packages, I was home with the two kids. Hallie grabbed one of her Lego vehicles, put two of her little figures in it, and started to drive it around. Sharon's backpack was on the floor in the living room, and Hallie had the vehicle drive up the side of the backpack, and said, "we're driving up the mountain!" Her vehicle then passed under the jumperoo and Hallie exclaimed, "we're driving through now!" It was good to see her creating a scenario for her little Lego people that was entirely unscripted; this was not something she had seen a character do on TV or anything like that. It was her own imagination that was in the drivers' seat.

This, a lot of dress up play (tonight Hallie was a doctor and she asked to listen to my heart; at other points this week she's been a "pretty princess" or a policeman) and some discussion of feelings (she turned to me tonight, while watching a segment of Elmo's World: The Great Outdoors that featured a lion and a bear, and said, "I'm scared; that's scaring me!") make it obvious to us that she is in the middle of a developmental spurt. We love it.

Food-wise, things have been going pretty well. Hallie is still not a big fan of eating because it distracts her from other, more preferred activities, but she's been enjoying some of what she's eating quite a lot. She was turned onto Cocoa Puffs by her cousin Adam, and has been munching them quite happily, asserting that they are "so yummy. Dee-li-cious!" And she is still in a toast phase, which is great. She also rather enjoyed several of the cookies I picked up at Isgro's in the Italian Market this week, though she would have preferred it had they been solid chocolate and not just dipped in chocolate.

Improved eating has led to improved growth: at today's checkup, Hallie was 32 lbs. 6 oz. and back at the 50th percentile for her age. Of course, she looks thin, but that's because she's shot up again and is now 39.25 inches (up from 38.5 inches), which is about the 75th percentile. And vomiting has stopped: we're now on day 245 and counting. What a difference this year is, relative to last year or the year before that.

Lea is doing great, too. She weighs in at 19 lbs and is 28 inches tall, which places her firmly at the 50th percentile for both. Her head is at the 75th percentile and is not much smaller than Hallie's (very small) head.

Lea is doing a lot of 'talking'; she is saying something that sounds an awful lot like "I got it!" (a phrase Hallie often uses) and "thank you". She is also trying to say "duck" and "teddy" and uses these words appropriately. When she is crying we hear something that sounds a lot like "mo-mm-y" but she's not really saying "mommy" or "mama" quite yet.

Lea has also learned to use her Fisher Price 'bubble gum' toy (where she hits a blue paddle to release the ball and turn on the music); loves her toy piano; and loves playing with the shakers and cymbals. And, basically, anything that Hallie does, Lea wants to do. She adores her sister and wants to emulate her every move.

Hallie feels the same way about Lea and the two kids often play together and crack each other up. Tonight, Hallie was on the couch and Lea signaled to me that she wanted to get on the couch, too. She climbed over to where Hallie was sitting, began to put her head in Hallie's lap, started playing with Hallie's hair, and gave her lots of hugs and playful slaps. Hallie thought it was hilarious. I thought it was sweet. Alas, I was unable to get a picture of the girls at play tonight, but did take this shot of them in the tub last night:

Given how crowded the Primo tub seems, I think we're going to have to just fill up the regular claw foot bathtub for the girls the next time the kids bathe together.

Anyway, that's it for now. Happy Thanksgiving, everyone, from our family to yours!