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Preview: Blogging Hallie and Lea's Life

Blogging Hallie and Lea's Life





Updated: 2017-11-13T07:46:00.996-05:00

 



Literal Thinking

2011-07-13T23:50:06.371-04:00

I am unabashedly plagiarizing this idea (and my comment) from one of my favorite autism bloggers, Lisa Quinones Fontanes over at AutismWonderland.  In a recent post, she relates a story about how she discovered the extent to which her son, Norrin, who is just a bit older than Hallie, is a literal thinker.  In short, this is a problem that many with autism (often of the higher functioning, Aspergerian nature) have with metaphor.

Anyway, I was contemplating posting this before Lisa beat me to the topic (hey, at least I can say that I am frantically working away these days on an article and can use this as an excuse for why I am not keeping up with blogging; once I meet my self-imposed August 1 deadline for submitting said article I shall start using my need to write a conference paper and/or prepare for the upcoming semester as an excuse!).  But Lisa is, as I have already noted, an inspiration to us slacker/bloggers.  And so I leave you with this story:

Our literal moment of the month: I had taken the kids out for pizza one day last week. We were seated at the table in the pizzeria and everybody was happily eating lunch. I turned to Hallie and said, "Isn't it great that we are eating out today, kiddo?" She flashed me a puzzled look and replied, "But we're NOT eating out. We're eating inside." She continued, pointing to the tables outside on the street, "THEY'RE eating out. We're eating IN."

I guess the kid has a point; we really weren't outside!   And I just love it that she stood her ground and explained her perspective to me.  Every day, she's getting better at this, at answering questions appropriately, and at asking questions of us.
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Martial Arts

2011-07-08T01:09:47.336-04:00

Last week, we decided to enroll Hallie in a martial arts class that meets a few blocks from where we live.  I had been passing by Zhang-sah, which is Korean for "brave scholar," for years.  Over the past year or so I had been thinking that it would be a very good thing for Hallie to enroll in a martial arts class; as one of her (many) school-based OTs pointed out to us about a year ago, one of the things that we might consider doing for Hallie as she gets older is cutting back (even if just a bit) on some of the formal therapies that she receives and replacing these with social activities that serve a similar purpose.  This would help us move from a medical- and intervention-based model to a community- based model, which is, down the road, one of our long-term goals.  While we clearly need to continue to do some medicalized/therapeutic intervention to help Hallie attain independence (things like learning how to fasten button and snaps, hold pencils with the correct tripod grasp, and write more fluidly come to mind immediately, but I suppose eating comfortably also falls into that category), we really have gotten to the stage (I think) where some of this is now possible and extremely desirable.In no small part this is the case because Hallie really has developed a few wonderful friendships at preschool.  And, as it has turned out, her closest little girl friend, B.,  just happens to be taking a pre-martial arts class at the studio that is close to our house (and even closer to B's house).  Since B. has now graduated from the YCCA and is about to go on to kindergarten, I've been particularly concerned with trying to find ways for Hallie and B. to maintain their excellent little friendship.  Even if they don't see each other every day at school, attending a weekly martial arts class together seems like an excellent way of achieving this goal.  And, in the meantime, Hallie will hopefully work on developing her core strength, discipline and focus, coordination, self-esteem and assertiveness, and a bunch of other good things like that.So, given all of this, last week I popped in to Zhang-sah to sign her up and schedule her "z-mat" test.  The sensei would assess her readiness for pre-martial arts and get to know her a bit and Hallie would get to familiarize herself with the dojo and the idea of doing martial arts.  Fortuitously, Hallie, Lea (who would love to take a martial arts class but needs to wait until she turns four...since they are not willing to accept her own self-designation of herself as a six year old) and I ran into B. and her mom on the street on the way to the z-mat.  B. decided to accompany Hallie to lend her support during the evaluation.Not so fortuitously, as it turns out in retrospect, Hallie was getting awfully sick and was a bit miserable.  Her sensory issues were way out of whack and her neophobia was at an all time high.  So she did not take well to the idea of doing something new and being evaluated for it.  However, B.'s presence really helped her through the (perceived) ordeal.    I daresay she even managed to have fun.That remained true, alas, until she needed to try on her gi (the martial arts uniform) to make sure that it was the correct size. At that point, Hallie once more reverted to shut down mode.  She literally curled up into a whimpering fetal ball and could not be coaxed into trying on the outfit  by anyone or anything.  I decided to take the extra small and run with it (even though she's at the 75th percentile in height, she is clearly thin enough to fit into an extra small, and even, as it turns out a 2T pair of shorts right now.  The particular illness which she has managed to contract has enabled her to shed two pounds in under a week.  The rest of us should only be so lucky!)Sharon and I had no idea what to expect given Hallie's histrionics.  But we decided to plow forward and signed a (month-to-month, just in case things did not pan out t[...]



Bear Cubs Wrestling

2011-06-24T02:57:08.963-04:00

We are so grateful that our girls (mostly) adore one another.  They are the age at this point where they play together regularly rather than parallel play.  Sometimes they'll make up games (they do a considerable amount of pretend playing which often involves riffing off of a theme, be it a beloved fairy tale like "The Three Little Pigs" or "Goldilocks and the Three Bears" or "Little Red Riding Hood" or a favorite television show like Ni-Hao Kai Lan or Peppa Pig).  They will assume various roles (and assign other roles to us and to Zen the cat, who participates -- sort of -- in a cheerfully bewildered feline manner) and act stuff out, using all of the millions of plastic manipulatives we own and the physical space of our home as props.  They also really enjoy reading books together:  Hallie will really be reading and Lea will pretend to be reading (she does so in a totally cute manner:  she loudly declaims the entire story that she has made up -- which is more or less based upon the pictures she sees in the book she's grabbed, which is inevitably a favorite of her older sister's -- and expects Zen, to whom she does most of her reading, to listen attentively).  We love it that books are probably our kids' favorite toys (which is saying something since we essentially live in an exceptionally poorly organized toy store).But the games that our kids especially enjoys are really physical and sensory.  They love to race and chase each other through our pop up gymboree tunnel (one of the best $35 purchases I ever made); roll around inside of it or inside of their Princess Castle Tent with a gazillion balls or stuffed animals; or wrestle with one another like bear cubs. The other night I took a series of pictures of them doing just that.  It's this series (or the series of shots I wish I had gotten) which is probably going to convince us of the absolute necessity of upgrading to a D-SLR camera (note to those few -- I think we're down to one -- people who still buy us holiday gifts:  please contribute to our camera fund instead!  Especially if you want pictures of your littlest grand daughters!)  Anyway, I took lots of pictures and none of them came out great and my pathetic editing skills did not improve them at all but hopefully the joy that these two girls felt shines right through:[...]



'Before' and 'After': The Fifth Edition

2011-06-12T02:14:36.775-04:00

Hallie had a relatively low key fifth birthday:  as she does most every Saturday, she spent the morning at hippotherapy in West Chester.  Indeed, most of the afternoon was spent at a fun birthday party, just not her own (ironically perhaps, it was for twins born a day after Hallie who are enrolled in her preschool class).  Hallie seemed to be okay with not having a big party on her big day and is eagerly awaiting her turn to host an assorted bunch of crazy (in the best possible way) five year olds which will come in a couple of weeks.But even if we didn't have her party today, we both knew that we needed to celebrate Hallie in one particular way:  we needed to bring Hallie over to the Pennsylvania Hospital Intensive Care Nursery to see some of her first friends.At first, Hallie was appropriately shy (a word that she has begun to use quite recently, and with great effect).  Even though Hallie read the signs on the walls and knew that she was in the 'nursery', she had no idea why we were schlepping her there.  Those developmental visits to the ICN ended way long ago (too long ago.  Note to NICU professionals reading our blog:  consider following up kids through at least age five or the onset of elementary school.  Hallie was discharged at age 2 corrected with little notation of her delays/disorders.  We are savvy and well-educated and have sufficient insurance to have hunted down referrals to developmental pediatricians and gotten Hallie into oodles of therapy.  The results of these interventions are very clear, as I shall show below.  But not everyone has the resources we do and some people optimistically take 'discharged at 2 corrected' to mean 'caught up by 2 corrected' and are blindsided by the problems that arise down the road.  End of speech, sound of getting down from soapbox). But then Sharon had the brilliant idea of using Hallie's favorite literary form, of all things the 'knock-knock' joke, to help break the ice.   Soon Hallie was regaling the nurses with the sort of inane, meaningless, and absolutely hilarious 'knock-knock' jokes that are the fare of typically developing five year olds everywhere (or at least among her peers at the YCCA).   Hallie's joke telling was incredible, but even more incredible were the peals of hysterical laughter that she emitted at her own jokes.  I am hoping that the nurses would tell the parents in the ICN who were hovered around the isolettes of their extremely premature babies that the funny five year old to whom they were listening resided, sometimes in a rather precarious state, in the ICN's nurseries (she was a resident in three out of four of them) for 121 days, often hooked up to various life-saving machines and devices, and was never expected to turn out like this at all. And on that note, I leave you with the 'before' and 'after' shots.  Here's one of Hallie during the first week of her life:And here's Hallie (and Lea) with one of Hallie's primaries, Corinne:And, finally, here's one of Hallie with her very first friend, Ellen, who was the first ICN staff member whom we officially met, and who has, indeed, remained a close person in Hallie's life:[...]



Friends on Steps

2011-06-11T08:08:54.609-04:00

Last night we ate dinner with our friends Uri, Shira, and Eran.  Eran goes to school with Hallie and Lea and is approximately halfway between our two girls, age wise (he's about 3.5).  Eran made a very strong first impression on the kids:  from the moment he started school at the YCCA this fall, we've been hearing about him.  Hence we felt very happy/lucky to have begun to make good friends with him and his family this past winter. 

Anyway, we were over at their house last night for a very fine dinner composed mostly of their yummy and fresh CSA (farm share) produce. 

The kids had a great time wrestling around like bear cubs (Hallie insisted that we bring her pink pop up princess castle and it was a real hit with Eran, as she predicted).  They tore the place apart as only they can do (Uri and Shira insisted that most of the mess was Eran's and predated our visit but I've met our kids before and have seen their amazing handiwork, particularly in relatively new environments replete with unfamiliar toys that must.all.be.explored.at.ONCE!). 

We also inaugurated Hallie's birthday season, which began at school with mini cups of Haagen-Dazs ice cream and party hats for the Rainbows (Hallie's group at school).  All of the kids were still wearing them and talking about the ice cream when I got there at pick up time.  Sadly, no one took pictures of this, but Hallie declaimed it, and the ice cream, to be the favorite part of her day yesterday. 

Then, after a nice healthy dinner, we got out a small ice cream cake (half chocolate for Hallie and half vanilla for Eran, who despises chocolate) and sang and blew out candles again.  Hallie was very pleased, to say the least.  And she can now blow out five candles quite quickly, completely unassisted (this is a major change for her).  Being the really dreadful parents that we are, we have no pictures of this, either.

I might put some candles in Hallie's toast this morning.  Perhaps I can get pictures of that!(image)



Memorial Day Weekend

2011-06-11T07:56:35.414-04:00

We spent Memorial Day weekend hanging out with our friends Sheila, Brett, and Alex.First, we took in the school carnival.  Hallie and Alex were thrilled to go on some pretty grown up rides without adult companionship.  Here they are getting ready to be swung wildly:Brett did have to accompany them on their spin on the tornado:And, likewise, Brett was there for the ride on the "Scrambler."  This only makes sense since, as you will note, we cannot even see Hallie's face over the bar (though you might be able to make out the hair on the top of her head if you look real closely):Lea, meanwhile, could only ride on one ride by herself:Sharon and I took turns taking Lea on the two rides that she could go on while accompanied by an adult (a pretty innocuous dinosaur ride and one other the identity of which now escapes me) but she was far from satisfied by these experiences.  She wanted to do it all, and particularly the fast, scary rides.  Both kids love roller coasters, speed, and height.  I am 100% certain that they do not get this from me (astute observers will note that it was Brett taking them on these rides, whilst I was manning the iPhone camera).I did manage to sort of deflect Lea's ire at not being able to operate her own bumper car by taking her over to some of the game booths where we could win prizes.  Strategically, we decided to play a game which everyone won.  There's really nothing quite like shelling out six dollars for a dollar store ball to placate a two year old's tantrum. Amazingly, I did win Hallie a prize on my first shot a wack-a-mole.  This was not something that I could replicate so yes, of course, we ended up shelling out lots of money for another prize for Lea.Suffice it to say that the kids had a great time (even with Lea's confinement to solid ground for much of the time) and we have just what we need out of the experience:  more balls and more stuffed creatures to which we must tend.Anyway, here's a cute shot of all the kids on Alex's front porch:  And here's one of Lea standing in the green grass.  Doesn't her hair look really red?  During the winter she seemed to be turning into a brunette, but now that she's out in the sun a lot, her red hair has returned. Anyway, the girls really love spending time with their friend Alex and hope to do it again very soon![...]



Two Gorgeous Girls

2011-06-10T18:33:14.793-04:00

I really enjoy having one-on-one time with each of the kids. This is something that really is only possible when I am done teaching for the semester since our childcare tends to coincide with my teaching schedule; right now the kids go to preschool three days a week and our nanny takes care of them on the fourth day (which is also a therapy-heavy day for Hallie). But having Laura watch the kids on Tuesdays has enabled me to schedule appointments and such of various sorts for one or another kid on Tuesdays and not have to schlep both of them all over the place. So, while the idea of having alone time with each of the kids overlap with appointments might sound a tad bit pathetic (and certainly less obviously fun than alone time spent at a music class or playground or what have you), our kids are used to attending lots of appointments for all of the obvious reasons and hence are quite good at refashioning the mundane into something fun.  You can see this very clearly from these pictures:

Here's Hallie on a pizza 'date' with mama after an evaluation at Penn:


And here's Lea hanging out waiting for her new hair-do:



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Making Magic

2011-06-02T15:33:52.571-04:00

Lea loves to do "magic" tricks.  Take a look for yourself; isn't she cute?

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Vocal Cord Surgery: The Picture

2011-05-26T22:12:39.176-04:00

This was the picture that Hallie's ENT gave us after the surgery yesterday.  What you are looking at is a magnified image of her vocal folds (taken via the camera attached to the scope).  You will note that there is a bubbly area that is white---that's some of the material that Dr. Z injected to 'bulk' Hallie's paralyzed fold (which is on the left--it's the one that looks a bit irritated).





In case you are interested in learning more about normal and abnormal laryngeal function and vocal folds, you can check out this website.

Hallie's voice today is still hoarse but definitely louder than it had been prior to surgery.  It's nice to hear her more easily.  I'll try to capture a video/audio of Hallie reading or something and will post that soon.(image)



Surgery Complete!

2011-05-25T13:19:00.393-04:00

Hallie was a model patient and cooperated throughout even though she was pretty scared.  The worst part was recovery and getting her IV taken out (can't say that I blame her, really).  But Sharon was there with her as Hallie woke up and that helped a bit.

Hallie's voice sounds a lot louder but is still quite hoarse (think:  loud frog with a touch of laryngitis) but it should even out in tone a bit as the irritation from the intubation and having the scope down her throat. 

We got a very cool picture of the injection site and I'll post that later as soon as we can scan it.(image)



Vocal Cord Surgery Day

2011-05-25T08:09:02.034-04:00

Hallie and Sharon were off to CHOP bright and early this morning so that Hallie could be prepped and sedated for her latest round of vocal cord bulking.  At least this time they did not need to be there at 6:00am and instead had a comparatively late arrival time of 7:00.

Even though Hallie would like her big voice back (since whatever benefits of the temporary bulking have long been reversed and it's nearly impossible again to hear the kid), she was quite nervous and scared about the impending surgery.  Over the past few days, we've been discussing it with her in preparation for this morning.  She remembers the last round and we find it much better not to try to spring difficult things upon the kid; introducing things to her via social stories is far preferable. Hallie generally is a model patient and letting her know in advance what is expected of her usually works quite well.

Anyway, we do hope that the surgery proceeds as quickly and smoothly as it did last time.  The worst part is the anesthesia (coming out of it more than the process of sedation).  But the surgery itself is very quick (it took five minutes last time; however, it's quite high tech and involves robot-guided needles attached to cameras that inject the paralyzed vocal cord with an expensive bulking agent.  Dr. K. will guide the robot by watching the action on a computer screen.  It's all pretty amazing stuff and we are lucky to live so close to CHOP, which is one of the few places where this sort of surgery is done.  I think the last surgery, which was just a test using saline, cost something like $15,000.  This one is probably going to be even more expensive.  Thank goodness we have insurance coverage and our insurance isn't giving us a hard time about paying for this surgery).

Anyway, to give you an idea of what Hallie's voice will sound like, I am uploading a couple of videos I took at her last ENT testing.  This was about two and a half months after the last surgery was done and half of the benefits of that surgery had already worn off, but  this should give you some sense of Hallie's vocal quality.  We are hoping that what we are able to hear from her after today's surgery is better than this but bear in mind that the voice you will hear when you listen to these videos is MUCH stronger than her voice was pre-operatively:

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I will update later on today to let everyone who reads this know how things went!




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Kids on Couches

2011-05-21T16:19:37.546-04:00

The kids spend a lot of time on our couch.  They jump on the couch; they fall asleep on the couch (this used to be a prime napping zone and it's still where Lea falls asleep every night); they stand on the couch looking out the window; they climb onto, tumble over, and hang out behind the couch (where their millions of stuffed plush creatures reside).  While I will not miss the couch (and its mate, the chair) once we so trash them that we really do put them outside to be picked up and/or turned into firewood, I imagine that the kids (and the cat who has ripped up the couch and chair) will lament their absence.

Anyway, here are a few random pictures of the kids on the couch that I took (and never posted) this winter.

Our heat was out in this one.  We have a pesky boiler that we installed new when we bought the house but that has a piece that blows out constantly.  The piece, called a thermal coupler, costs about $3.00.  The heating repair folks charge $300.00 to replace it.  Sharon has learned how to do it herself and has saved us about $2990.00 over the past ten years.  But sometimes it takes a day or two to track down the right part when we run out of the stash we maintain, so the kids were huddled up in blankets on the couch while Sharon hunted down the correct piece.  They looked awfully cute when doing so.

In this picture, Lea is pretending to be a dragon.  She makes an awfully cute dragon, but I am not sure why the blanket's makers decided that dragons are orange.


And here Lea has fallen over, fast asleep after a session of jumping on the couch. 
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Discharged!

2011-05-27T00:27:26.090-04:00

This week, Hallie was discharged for the very first time by one of the specialists whom she sees at CHOP.When we got home from the NICU 4.5 years ago, we immediately set up appointments with pulmonology, gastroenterology, otolaryngology, and ophthalmology.  Over the years, we've added orthopedics and developmental pediatrics.  And we've always considered ourselves lucky because we have never needed to see a cardiologist, neurologist, nephrologist, and a bunch of other folks whom I am sure are very knowledgeable, personable, and at the top of their fields but whom I prefer not to get to know up close and personal.Anyway, we see most of the aforementioned specialists twice a year, which is about an average schedule for a former micropreemie, though there were times that we had to go in to GI or Pulmonology three or four times a year when Hallie was going through particularly rough spots.This past year, we ended up needing to see Ophthalmology an extra time because one of Hallie's OTs (there's been a lot of turnover at both the private practice and school-based agencies that see her) thought that Hallie wasn't tracking properly.  We had also begun to note a pronounced squint and facial tic developing and were pretty concerned.  Hallie had developed advanced Retinopathy of Prematurity (ROP)  (she was at Stage 3, Zone 3, with Plus Disease, which means that the blood vessels behind her retina were severely abnormal and she was getting close to the point where her retina could have detached).  Things were so bad that the mobile CHOP Ophthalmological team had scheduled her for bedside laser surgery.  They checked her out the night before surgery (they'd come into the NICU with their crazy headgear, dilate the babies' eyes, and check them out.  This all would have been super cool were my kid's eyesight not at stake).  And lo and behold, the ROP began to resolve.  They continued to check on her every few days, and then every week, for the next eight or ten weeks (we had weekly appointments at CHOP to see the eye specialists after discharge).  But things were looking good.Still, Hallie's eye doctor warned us that it was extremely likely that Hallie would require glasses by the time she reached school age.   Pretty much all kids who have the laser surgery do, but most kids who develop such severe ROP require them as well.  We could live with this (I am extraordinarily  near-sighted and while I would prefer to see well, or even better, and while this has affected my peripheral and night vision even more than my daytime vision, between glasses and contact lenses and possible corrective surgery, there are fairly easy measures that one can take to rectify poor eyesight).Anyway, we were all geared up for this to be the year that Hallie would need glasses.  Instead, Dr. D. cheerfully discharged Hallie:  as it turns out, Hallie sees 20/30 in her left eye and 20/40 in her right.  She is at no more risk than anyone else for needing glasses and while we are welcome to come back any time (which we will if we think she does need glasses; why go to Pearle Vision when you have the fabulous CHOP docs right in your 'hood?), we need not make a follow up appointment for Hallie ever again.  At all.That does not mean, however, that we will not be seeing the lovely Dr. D. in six months.  As it turns out, she would like to follow up with us for Lea.  At Lea's two year well-baby check up (the same one that turned into a check-up for a raging double ear infection), our ped. noted that light was reflecting off of her cornea unevenly.  This could be a sign of strabismus, where eyes do not look at an object at the same time. [...]



The One Where We Forgot to Blog about the Second Child's Second Birthday

2011-05-20T03:03:16.136-04:00

The good news is that Lea is a few weeks away from being 2.5 years old.  The bad news is that her moms, in their constant state of being harried parents who are finding it increasingly challenging to juggle parenting, two full time jobs, the great search for an appropriate kindergarten, and general household duties like folding laundry, taking out trash, and changing yet another failing garbage disposal, have somehow neglected to blog about their second kid's second birthday.  It's a pathetic truism that there are fewer pictures of the second child than the first, but this seems less motivated by intentional neglect than the exponential speeding up of time that ensues when one is chasing two kids in two different directions and still attempting to remain centered.  Whatever that might mean.So in the spirit of attempting to rectify this situation, I present you with a brief (and I mean brief) pictorial timeline of the week long celebration of Lea that occurred at the end of January.Behold the Cookie Monster cupcakes:These were very much a collaborative endeavor.  Lea was really into a cookie monster phase (which we find interesting and a bit odd considering that the kid does not watch Sesame Street at all.  Instead, she favors her sister's 'shows' -- this is what Hallie calls them.  So Lea's viewing tastes run in the direction of Ni Hao, Kai Lan! and Dora the Explorer, which Hallie is only beginning to sort of outgrow).  Anyway, Lea loved/loves Cookie and we decided to make her these cupcakes.A few observations about cupcake making:1.  Do yourself a favor.  If you are going to make 36 or 63 or 122 cupcakes to bring in to preschool, buy a mix.  Duncan Hines has some great ones.  This runs counter to everything in which I firmly believe (apparently, my mom's lessons about baking from scratch sunk in completely despite the fact that she rarely let me actually help in the kitchen and tried to pass off doing the dishes--which she abhorred--as a glamorous component of baking).  But cupcakes are a major pain in the butt; kids like things sweet, and no one eats them anyway.  So just buy a few boxes.2.  Don't be afraid of taking this task on.  After all, someone else can do the actual decorating.  Preferably someone else like Sharon, who is, after all, an architect who is meticulous and detail oriented.  So, really, all you have to do is buy the materials.  A couple of trips to Wegmans, finding a nice recipe for frosting on the internet, and a couple of emergency trips in medias re to the grocery store to procure yet some more confectioners' sugar and you are set.3.  Be tolerant of sweets.  The whole house smelled like powdered sugar for a several days running.  Cooking dinners that involved the consumption of lots of garlic helped restore the olfactory pH of the place by the end of the week.4.  Buy an awesome cupcake carrier.  Buy this one. Ours is an oh-so-fashionable lemongrass and really works.  But don't plan on balancing it on top of your double stroller.  This is impossible to do once it is filled with 36 cupcakes and is still not advised when empty.   5.  Plan on showing up at school for the event, even if you need to be at work.  Attempts to get teachers to both take and send you pictures often prove futile.  Anyway, this explains why we have no pictures of Lea blowing out her candles at school, but we are assured everyone had a great time.  No one seems to have suffered in a long lasting way from sugar shock, either.Of course, we were not satisfied by the notion of just having a school party (especially since neither [...]



Mothers' Day 2011

2011-05-08T21:34:33.173-04:00

Pink flowers (2 kinds, no less)?  Check
Pink paper?  Check.
Pink princess?  Check.
Mommy returning home from three-days away on West Coast?  Check.

Happy Mothers' Day, 2011!  Check, Check!(image)



Baby!

2011-04-26T16:05:29.023-04:00

Lea loves her baby dolls, and one in particular, whom she has (appropriately, if unimaginatively) named "Baby."  Baby accompanies Lea on most of her journeys, including ones to school.  Keeping track of Baby is something that we do a lot of around here.  Naturally, we have applied one of our many Mabel's Labels to Baby's tush tag so that she doesn't blend in with the crowd of other naked baby dolls who reside at the YCCA.  (Apparently it is a lot easier for the kids to identify Baby than it is for us adults; Hallie and Lea frequently correct us when we hand Lea her second-favorite naked doll, who is named CoCo, when she's requested Baby). But sometimes we forget whether Lea has brought Baby with her to school and this can lead to all sorts of problems.  In one harrowing incident,  our nanny only discovered that Baby had gone missing once she had gotten the kids home from school.  Fortunately, she figured this out before the school had closed for the night and walked back the eight or nine blocks with Hallie and Lea to retrieve Baby.Otherwise, Lea's face might have looked a lot like this (apparently this melt down had nothing to do with Baby's absence and probably instead was related to one of us telling Lea, "NO!," which is not one of her favorite words.Lea is a fabulous mama to her babies, as you can see from this very cute but admittedly somewhat long YouTube video: allowfullscreen="" frameborder="0" height="295" src="http://www.youtube.com/embed/7wEEC0AZbvc?fs=1" width="480"><p>&amp;amp;lt;br&amp;amp;gt;&amp;amp;lt;br&amp;amp;gt;&amp;amp;lt;br&amp;amp;gt;&amp;amp;lt;br&amp;amp;gt;&amp;amp;lt;br&amp;amp;gt;&amp;amp;lt;br&amp;amp;gt;But I &amp;amp;lt;br&amp;amp;gt;</p>But I digress from the subject at hand:On Sunday, Hallie, Lea, and I went out for a stroll in the stroller. Naturally, Baby came along with us. Lea, who fought naps all week during her Spring Break, really needed a rest and was asleep, clutching Baby, within seconds of hitting the stroller. Several people oohed and ahed over how cute she looked, with her arms wrapped around Baby. We managed to go to the store and return home (with Hallie walking alongside the stroller most of the way, so we were going none too quickly) and Lea remained fast asleep. I did not monitor Baby's whereabouts.After she awoke, Lea was refreshed and played raucously. We had a grand old time tossing balls; playing baseball with a drum stick and superball; dancing; bouncing on the chair and sofa; and all sorts of other fun stuff like that. Until bedtime. When Lea requested Baby.I had no idea where Baby was. I had no idea what Baby's brand was, either. All I know is that I, and then Sharon and I, tossed the house upside down to locate baby. We were having a Knufflebunny moment.  There is a reason why Mo Willems has subtitled the book, "A Cautionary Tale."  We were clearly not nearly cautious enough.Fortunately, Baby turned up in the heap of stuffed creatures that reside behind our couch.  And fortunately I pinned down her origin and identity.  I have a substitute 2006 Fisher Price Little Mommy, complete with snaggle toothed smile, on its way from Ebay.  I am dubious whether Lea would fall for the old switcheroo, but at least we're trying to avoid major childhood trauma.  And in the meantime, I'm investigating whether we can install a microchip into a plastic-and-soft-bodied Baby.[...]



Playtime Progress and Kindergarten Angst

2011-04-23T10:25:21.673-04:00

There are several major picture posts that chronicle the past five months (!!!) of our kids' lives in preparation (as in:  I finally managed to download pics and videos to my computer and will at some point soon organize them).  But in the meantime, you will just have to put up with my random thoughts about current events/developments and our upcoming educational endeavors/stressors.Hallie has made truly amazing progress over the past year, and especially over the past three months.  Here are a few of the great things that are happening for her developmentally:1.  Pretend Play:  A year ago, Hallie's pretend play skills were at best rudimentary.   At most, she acted out scripted routines that were familiar (so she did things like re-enact fairy tales like the "Three Little Pigs" or "Goldilocks and the Three Bears").  While Hallie still enjoys a good fairy tale or classic story (in addition to the aforementioned, "Jack and the Beanstalk," "Peter Pan" and lots of lots of stories related to princesses are a big draw for her), Hallie has developed the skills she needs to develop her own stories, put on plays, etc.And since dressing up is so much fun, the entire family has decided to get in on it.  Here's a picture from a Purim party that we attended at the home of Eran, who is one of the girls' school buddies and regular playdaters, and another cute one of "Peter Pan" smiling (since Lea was looking away or frowning in all of the group shots we took).Back to Hallie:  She's not just doing pretend play with her body and a bunch of costumes but also with small figures (people, animals, etc).  In the old days, Hallie used to line up her toys or perhaps arrange them in some activity (so they might all be lining up to get on the school bus, or surrounding the TV watching a show, or something of that nature). The configurations and arrangements were extremely precise and she was none too pleased if you disturbed them.  These days, Hallie's play skills have moved so far beyond this stage.  She's now having the little figures talk, walk, interact with one another, and act out realistic scenarios.  From my eavesdropping in on her play, it's clear that she's playing out the scenarios that matter to her and her life in the process.  Her little figures are having trouble sharing their toys, but when one does decide to share with another, a third will chime in with praise.  If they don't share, the characters might have angry words with one another and they sometimes end up in time out (she has threatened her doll house baby, who may be named "Bunny" and the little girl who inhabits the same structure with banishment to the High Chair (the unfortunate location of her own time outs now that she no longer eats in one) for misbehaving or having accidents.   Her little people go to school, play in playgrounds, go swimming and have a nicely well rounded existence.  Just like Hallie's.Hallie initiates a lot of this play and doesn't just follow along with others when they are playing in this way.  The other night, Hallie got out the pretend food, took orders from us, and she and Lea served up slices of cake ("gumdrops or strawberries?"), pizza (She had a few slices of plain but was happy to accommodate our request for pepperoni, mushroom, or spicy--which is how she thought of the pepper rings).  She was also very happy to make us triple-decker sandwiches if we were not in the mood for pizza.Interestingly (and not at all surprising, really), our play space (which still remains cluttered despite repeated attempts at c[...]



Let's Play Ball!

2011-04-01T10:58:06.401-04:00


Sharon and I are headed out to Citizen's Bank Park on this wet and snowy (yes, we did have some flakes earlier) April Fools day for Opening Day of the 2011 season (tickets to this game and five others were my Valentine's Day gift from Sharon this year.  Thanks, Sweetie!).

The kids are all decked out in their Phillies gear (their preschool was awash in shades of red and pinstripe) and very excited about it, too.  So in honor of the Phillies, I thought I'd break my blog silence and post this picture (alas they are not both looking at the camera, but I think we may have a decent Flip Video to upload later).

Let's go Phillies, and may the rain, rain go away and pretty much not bother coming back for a while!(image)



Insight into Hallie's Mind

2011-02-05T09:32:47.911-05:00

Having found her voice (or having been given a new, temporary one by the wonderful ENTs at CHOP), Hallie has turned into a chatterbox lately.  We love it.  She still has conversational skills that are well behind those of her peers, but she's making progress and we are so grateful for this and I think that Sharon and I know that there is no going back--we need to make sure that Hallie keeps her voice.Anyway, since Hallie is talking more, she is also providing us with greater insight into how she thinks about the world.  She had the following conversation with Sharon last night which is interesting on a couple of different levels:Setting:  Sharon came home late from work last night after running a couple of errands related to our little family party for Lea today. So there had been no time for dinner (and I suspect that Sharon did not have much time for lunch, either, since she was catching up on work having spent the prior two days dealing with doctors visits, sick kids, lost car keys that led to a major crisis that was ultimately resolved when we discovered that Lea had hidden the car keys in our nanny's mitten, and a bunch of other fun stuff like that).  So Sharon was starving and her stomach began to growl a lot as she was reading Hallie her stories before bed.Hallie looked over at Sharon sympathetically and said:  "Mommy, you have a tummy ache!  Don't worry mommy, I will get you some water and you will feel all better!"Hallie proceeded to get out of bed, run over to the bathroom, climb up and get down a dixie cup and fill it with water, bring it over to Sharon and ask her to drink it.  Sharon, of course, complied.Hallie, satisfied, declaimed:  "There you go mommy!  You will feel all better.  You won't have a tummy ache anymore."This was such an interesting conversation.  First, it shows how empathetic Hallie is.  She notices when others are in need and she really tries to help them.  She is constantly getting things for Lea (and Lea, having learned at the feet of the master, reciprocates by getting stuff for Hallie all the time.  This of course does not prevent them from having knock down, drag out fights over stuff just like any other healthy sibling dyad).  And she uses her own experience to try to figure out how to help others, which makes perfect sense (though down the road I suspect that we will need to work with her on that ever important theory of mind issue to help her figure out that others might want something different from what she desires).But this was really interesting on another level:  it is clear that, when Hallie says that her stomach hurts, she means (or at least sometimes means) that she feels hungry.  But she has no idea that this is what is going on with her body.   It may also be clear now why it is that she constantly requests water.  She drinks tons of water, all day long.  This is a great thing for her body in general, but not a great way to satiate hunger.One interesting thing that lately has struck me about autism, or at least Hallie's version of it, is that the communication deficit that is so central to this condition is not just related to communication with the outside world.  Rather, Hallie has trouble communicating with herself.  And if you cannot interpret the signals that your own body is sending you, of course you are going to have problems communicating with others and interpreting their body language, right?  This may be why professionals have noticed that sensory integrat[...]



Storm of the Week Club

2011-01-31T14:04:46.167-05:00

Note to Mother Nature:  I did not sign up as a member of this club and I am demanding a refund of my dues and a rapid transition to 50º and sunny outside weather!Here in the North East, we seem to be stuck in a weather pattern that is bringing us some variation of snow, sleet, ice, or freezing rain at least once a week and usually on a Tuesday or Thursday.  Since I teach on Tuesdays and Thursdays, this is mucking up my syllabus (I haven't even gotten to know the names of my students yet!) and making me extremely cranky.  Gone are the days when I used to sit by the window wishing and hoping for a nice snow storm that would get my out of a test I had to take (I'd engage in prayer and bargaining with Mother Nature until about 9:00pm every potentially stormy winter night and then buckle down and study for 2 hours when my prayers did not work).Instead, I read the scary accuweather blogs and forums obsessively, hoping that they are the bearers of happy tidings that a snow event will narrowly miss the corridor between Philly and Lancaster that is the site of my commute and life.  Alas, they never do, do they?Last week's storm brought us this:Oddly enough, we were not the only ones taking pictures at night from our front door.  Our neighbor across the street was doing the same thing.That was the amount of snow that we had by about midnight on Wednesday into Thursday.  We got about 2 to 3 inches an hour that evening, so by the morning we had an impressive 15+ inches of snow on the ground (from just this one storm).  This is what Philly's Washington Square looked like on Thursday:What's not easy to tell from these photos is that we also had a pretty impressive coating of ice underneath all of that snow.  We had gotten a few inches (perhaps 3, total) of snow on Wednesday morning.  This was then followed up with some heavy sleet and freezing rain.  All of that froze and turned into a sheet of ice that was extremely difficult to remove even when one tried hard to do so.  Not that everyone did, of course.  I wonder what kind of revenue stream the city of Philadelphia would have were the cops to actually issue those $50 tickets they threaten to give out to anyone who fails to clear a 3-foot-wide path in front of their property.    It's also amazing to me how bad the side streets are in our neighborhood (which is just south of the busy Center City district).  Even streets that typically are very heavily trafficked are icy, tire-rutted messes.  Lancaster (which appears to have been spared the freezing rain of last week's storm) is in much better shape than Philly.Hallie was extremely perturbed by the sound of the ice pellets dinging on the house.  She couldn't make sense of the noise.  It seemed to her that snow was falling from the sky but it sounded nothing like snow at all. I finally convinced her that these were tiny little ice cubes bouncing off of our house.  At bedtime on Wednesday she asked Sharon if she could look out the window one last time to see the ice.  I think she was mightily confused when Sharon told her that it was snowing again, not icing.While no big fan of the winter weather, Lea is a huge fan of snowmen.  She was thrilled by the Frosty that we built in our backyard right after the Boxing Day snowstorm.  But that Frosty did not last terribly long.  His disappearance saddened Lea, who has mournfully exclaimed each and every day since then (and often more than once):  "Where's Frosty?&nbs[...]



Snowy Day

2011-01-13T01:45:59.750-05:00

Philadelphia got about six inches of snow last night into today and, after our experience last winter (which featured snow totals in excess of 60 inches), everyone in the city overreacts to the mere mention of the word 'snow.'  The stores were picked clean (and crazy); residents (including myself) were gearing up for snow by mid-morning on Tuesday (and were disappointed by the fact that no snow had fallen by 6:00pm); the city declared a state of emergency (which was excessive) and had sent out fleets of trucks outfitted with plows and salting supplies to pre-treat the roads and prepare for the storm (which is a good thing); and numerous schools decided to close preemptively.  By morning there was snow on the ground and the Philadelphia School District shut down for the day (but Hallie's school was open; sadly, since she doesn't go in until the afternoon on Wednesday, she did not get to play in the yard with all of her friends who enjoyed the soft powder). But never mind that; we made our own fun.  Around about 11:00am, I got the kids bundled into their snow suits and grabbed the plastic sled we purchased last winter and we headed out into the elements.  We ran into our next door neighbor's girls who were hanging out shoveling the last bits of snow from the walk in front of their house and they and their nanny and their nanny's boyfriend (who graciously pulled the sled for them) traipsed down the block to the playground.Amazingly, no one else was playing there so our girls had it all to themselves.  They made good use of it, too.Hallie and Karina had a blast being pulled through the snow:Ariana loved it too, but Lea was less convinced of the charms of being out in the snow.  She wiped out on the sled once (which no doubt brought back memories of eating snow when she was on the sled last winter) and didn't really relish getting the stuff on herself.  (This is also how she feels about sand, which is not terribly surprising).  But she had a few good (fairly slow) pulls through the playground in spite of this.Hallie and Karina soon discovered the charm of snow sliding.  It was a lot of fun to race down the slide and land in a big fluffy pile of snow at the bottom:Lea was not so sure that this was quite as much fun as her sister suggested it would be:Hallie and Karina also made snow angels:Here's Hallie's perfect angel:And speaking of perfect, Hallie's vocal cord surgery went swimmingly well on Monday.  She is working on yet another cold (which she did not pick up at CHOP; its origins are probably to be found in the epidemiological swampland of her preschool) so it's hard to tell if she has her full voice right now, but it's definitely easier to hear her.  And interestingly enough, she seems much more interested in speaking, and speaking in longer and more complicated and assertive phrases, than she was before the surgery.  We're not sure if she finds it more comfortable to speak (since she needs to strain less to be heard), or is aware that people can hear her better, or is just more confident, but our nanny and Hallie's teachers both mentioned this to us.  And we can definitely hear her better and don't have to walk up to her and ask her to repeat what she's saying a million times over.  She still does not have a full voice, and there's still a hoarse quality to it, but we are very happy that we did this surgery and, all things being equal, we will likely do a more permanent version of this some time this spring (t[...]



A Major Milestone

2011-01-09T21:53:23.506-05:00

Hallie hit a major milestone today:  for the first time ever, she expressed an interest in baking with me. Cooking is something I have long look forward to doing with the girls.  Way back when Sharon was pregnant with the twins, I used to walk around talking about how we'd hold 'clinics' in our kitchen where I'd teach them all about spices and how to make flavors 'marry'.  We could have 'spice of the week' weeks and 'guess the ingredient' games and do other fun stuff like that.  And this, of course, would be part of my special time with the kids since I love to cook and Sharon, to put it mildly, does not.  Well, actually, that's not necessarily the case:  she has no idea whether she likes to cook because she doesn't cook at all.  When I first met her she literally had the following in her fridge and cupboard:  salt (which she enjoys more than your average individual does); sugar (purchased for her by someone who wanted to add some to a cup of tea or coffee); Lays potato chips and cheddar cheese (eaten together as a dietary staple); and a stick of butter.  So living with me has been both incredibly frustrating (we have a million things in our fridge and tiny kitchen cabinets and this array is ever expanding) and yet delicious (I hope) since I can whip up a fairly decent gourmet meal at a moment's notice.  Should all the stores in Philly close down for whatever reason, you probably want to head here since I am fairly certain we'll be able to hold out for a few weeks or months with what we have in house.So, given how much I love cooking (and shopping for cool ingredients), it's been doubly sad that Hallie has such a fraught and negative relationship to food.  It meant that we could not share something that I really longed to share with her.  Lea seems to be heading in the exact opposite direction (she loves to eat, but is especially fond of fruits and veggies and will try almost anything, even foods that are a bit adventurous for a 2 year old like pad thai and curries).   Anyway, I am sort of digressing.  To return to the subject:  on New Year's Day, Hallie requested chocolate chip cookies.  We didn't have any pre-made ones in the house (I tend not to buy store bought cookies, with the exception of graham crackers and Oreos since she'll eat those).  So, being the mom that I am, I offered to whip up a batch of chocolate chocolate chip cookies for her.  Half an hour later they were ready and, wouldn't you know it, she ate a few.  She proceeded to eat a couple more per day, every day.  She would often just eat part of a cookie and then move on to another one (who knows why Hallie does this, but this is a pattern even when there is no discernible change in taste from one portion of the item to the next.  For example, she'll nibble all around the edges of a Ritz cracker and reject the middle).  No matter about the discarded half-cookies; I considered it a major victory that she was willing to eat something that I actually made from scratch.  (FYI:  I do not consider toasting wheat bread and smearing it with butter to be real cooking).The kids finished up the last of the cookies this morning and I offered to make some more.  I took the butter out of the fridge to bring it to room temperature and set up the Kitchen Aid Stand mixer on the counter (some day I would enjoy having a kitchen big enough to allow me to leave it out all of the time)[...]



Speech, Speech!

2011-01-06T13:59:47.765-05:00

Wednesdays are speech therapy days around here:  Hallie has a half an hour of private speech (and an hour of private OT) in the morning and then an hour of speech at school (which runs coterminous with the Social Skills Inclusion Program that she attends there) late in the afternoon.While that's a lot for a kid to do in one day (it amounts to 3 hours of therapy, broken up by lunch and playtime), Hallie approaches therapy as if it were play (we used to tell her that we were going off to play with so-and-so but Hallie knew better and started calling it therapy, so now we do, too).  As long as the therapist is a good fit for her*, Hallie works really hard in therapy and likes to please whomever she is working with.  (*One should not underestimate the importance of a good working rapport between a child and his or her therapists.  There are many therapists and teachers out there who should not be working with kids, or at least not with Hallie.  We usually give them a few weeks to a few months and if they still deem Hallie to be a difficult child or try violate her trust, we fire/replace them.  Likewise, if Hallie has been working with someone and makes no progress in a three month period, we discontinue therapy and look elsewhere.  In such cases, the therapist may be well-versed in whatever it is that s/he does, but it simply is not something that works for Hallie.  The best therapists we've had have looked at Hallie as an individual and figured out what turns her on and then uses this as an avenue for helping her learn to do something that is hard for her to do on her own).Anyway, I digress.  Back to yesterday.  E. came out of the session with Hallie a few minutes early so that she could talk to me about Hallie's recent progress.  Lately, Hallie has really made great strides in dealing with the problems that she had been having with pronoun genders (she used to mix up 'he' and 'she' and 'him' and 'her' lately; now she gets these right about 80% of the time); with sequencing (being able to organize cards logically so that they show the evolution of a simple narrative sequence); and with describing objects in more robust terms.  She is also doing a bit better in terms of answering "what" questions and in beginning to discuss simple subjects in a free-form way (things like her family, what she did that day, etc.).  All of this is very good.  The only problem is that this may in fact disqualify her from receiving speech therapy paid for by our insurance.   While, even in terms of these aforementioned exercises (and even more glaringly in real life, a topic to which I shall return in a bit) Hallie is still quite clearly behind most of her peers, she is not necessarily sufficiently behind them to receive therapy.  Apparently the range of 'normal' speech is still quite broad at age 4.5 and one has to be quite a bit behind the lowest level of what is deemed normal to qualify for services.   This is something we're going to have to test (quite literally):  there are a lot of very different assessment tools out there and some of them do a better job than others of evaluating preschool speech.You might ask me why am I not more excited that Hallie is on the verge of placing out of private speech services?  I think this is a fair question, but it has a pretty complicated answer.  First off, let me state that I am nothing short of thrilled [...]



A Year in the Life of Hallie

2011-01-03T01:53:50.804-05:00

As 2010 drew to a close, we've been reflecting on how much Hallie's life has changed over the past year.This was really brought home to us by the differences we saw in Hallie's response to her school holiday party this year, relative to last.  As I think I mentioned a few posts ago, last year we had to drag her kicking, screaming, and crying back to school on the evening of the party.  Everything was a bit amiss that evening:  Sharon picked her up from school instead of me; instead of getting out of the car at our house, I got into the car with Baby Lea (who was very much a baby at that stage) and a huge dish of macaroni and cheese and we headed back to school.  We tried to explain to Hallie that there was a party at school and that we'd all be having dinner there (never much of a draw for Hallie) and that she'd see her friends and teachers and sing holiday songs.  But Hallie was overwhelmed, in tears, and heard none of it.  Once we got there, things were sort of okay but only just sort of:  as expected, dinner was not much of a draw, and there was a lot of noise and general mayhem.  Kids were racing around and playing with one another but Hallie couldn't make much sense of what was going on.  She sat off to the side when the singing began (as she has done at pretty much every school performance up until just recently) and did not/could not engage with the other kids.  We survived the evening but only just:  our threshold for survival was low and basically entailed making it through without a major meltdown, Hallie vomiting, or Hallie running off through the church hall door when some unsuspecting parent opened it.  It wasn't exactly a low-key, stress-free event and, needless to say, neither Sharon nor I networked or chatted with other parents (which is what parents do at such events).   We kept an eye on Hallie, dealt with Lea who was a bit out of sorts in her own right, and were glad to just to escape unscathed.Fast forward to this year:  The YCCA had the good sense to break up the dinner/concert into two locations.  The little kids would perform their songs first in the upstairs classroom and then eat.  The older kids would perform an hour later in the big church hall in the middle of the pot-luck feast.  There are only seven families (our own amongst them) who have kids both younger and older, and we were welcome to spend time at both events or either event as we wished.We opted to head over to the little kid's concert first to hear Lea perform.  Lea, like Hallie, enjoys music immensely and was the only kid in her group (which is the youngest) who participates regularly in sing-along activities.  We knew she'd be psyched to be part of the group.  Hallie also knows the younger kids (the YCCA is small--about 60 or 70 kids altogether--and while kids spend much of their time with their age cohort, they do mix it up with other age groups, especially when they have siblings at school, at various points during the day.  This, plus the fact that Hallie is peer buddy to some of the younger kids in the inclusion program that she helps guide through activities, means that she is quite comfortable with a lot of the younger kids.  So she was excited to partake in the little kids' performance, too.  The real surprise for us came when we went over to [...]



Lea's First Haircut

2010-12-31T17:44:36.055-05:00

Just in time for the New Year (well, Tuesday, but I am only getting around to blogging about it now), Lea had her very first haircut.  Things were getting pretty gnarly in the back of Lea's head and she was working on a fine mullet that we had to shear in the bud, so to speak.  See the Christmas post a couple of posts back for a clear image of what I mean.Haircuts can be, well, hairy things to which to subject kids.  Particularly kids like Lea who don't really like others (doctors, hairdressers, etc) getting into her personal space.  Our strategy?  Use Hallie as a model.  Hallie had been asking to get her hair cut since at least Thanksgiving.  Pretty much every day, Hallie would say something like, "Let's go see Whit-mee (Whitney) to get my hair cut shorter."  [When I asked her what kind of style she'd like, she responded, "One with scissors."  Too cute].Anyway, Hallie really likes Whitney and enjoys getting her hair cut. When Lea saw how happy was during her haircut, she realized that she'd be fine too.  Lea loves to do anything that Hallie does.So the haircut itself could not have gone more smoothly:It was only later on, while I was watching the kids during Sharon's haircut, and had to tell Lea to stop doing something or another that was going to get her in trouble/hurt/make everyone around her go crazy (as is wont to happen when she screeches in the shrillest tone you can imagine) that she melted down.While Lea's awfully cute even when she's crying uncontrollably, we think that she looks a whole lot cuter when she's happy.  So does her new hairdo:[...]