Happy 4th Birthday Pictures! (A Much Belated Work in Progress)

Well, at long last, I'm finally getting around to posting pictures from the multiple birthday celebrations that Hallie enjoyed this year. In the interest of actually getting this task accomplished, I will try to keep my verbiage to a minimum (well, a minimum for me, at least).
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As I think I mentioned, we sent in 25 single-serving sized containers of Hallie's favorite dessert--Haagen Dazs Ice Cream--to preschool on the actual anniversary of Hallie's birth. We also brought in Dora and Diego birthday hats, which were at least as great, if not a greater, hit than the frozen creamy treat that accompanied them. Who knew that hats priced at $2.99 for 8 would make such a splash with the preschool set?

The ice cream itself, though, was irresistible. The teachers served it at the 10:30am snack break (rather than after lunch, when they deemed it more likely to lead to sugar high and interfere with the schedules of those kids who still napped). When the teachers whipped out the bag of treats from the freezer and distributed them to the kids, the preschoolers could not wait to indulge.




Hence, they had to backtrack in the middle of their snack to sing Happy Birthday to Hallie. Hallie loved it, and really relished being able to blow out her own candle (she couldn't quite do this at ages two or three but is now an expert at this art form, as we'll see in a bit).


After a chorus or two (one little girl insisted on singing Happy Birthday a second time and Hallie did not protest, the kids went back to eating their treats in earnest.


In some ways, it appears that Hallie feels that this was the most memorable and important aspect of her birthday celebration. For at least a week after the preschool party, Hallie kept mentioning it to us. She also, apparently, has a good handle on her peers' ice cream flavor preferences. She can still tell you who chose Vanilla, Strawberry, or Chocolate (she, of course, opted for the last of these). I don't think that there's a single thing that eludes this kid's powers of observation or a minute detail that she overlooks and/or forgets.

But the preschool party was just the beginning of Hallie's official celebration this year. After I picked Hallie up from preschool on her birthday, we came home and got ready for another party, this one with Aunties Renee and Kim and their little girl, Taylor.

After a quick dinner, we got ready to have some of the yummy chocolate cake that I had procured from Wholefoods in honor of Hallie and Olivia's birth earlier that day:


Hallie independently blew out the candles on her cake (she did this at school, too, but we weren't there to capture it on video). She was thrilled. So were we.





Then, on Sunday, we had her big birthday bash at Bounce U. It was the perfect venue for a party for Hallie. Hallie adores trampolines and jumping on inflatable structures (and is getting more independent at handling the big and somewhat scary slides, too). What better way than to share this love of vestibular motion with her close friends and family?

Here'e Hallie saying "Cheese" (but not quite managing a smile while doing so) in the reception area at Bounce. Please note the really cute shirt that Hallie is wearing, which was adorned with her name, age, and a dragonfly motif (to commemorate Olivia); it was made by a fellow micropreemie mom who sells birthday shirts and a whole lot more over at Pixie Stitch Boutique. The quality of the shirt is wonderful, the detailing is delightful, and the colors of shirts and fabric patterns that they use for appliques are really spectacular. It's hard to find something other than whites and pastels, and Hallie does not look nearly as good as these as she does in bright colors.

Hallie was thrilled to be at Bounce and to see so many of her friends there with her. She gave a nice big hug to Eliza (whose mom, Anne, took many of the pictures I am posting here).


Everyone was super excited when it was time to go into our first bounce room. The Bounce birthday party package includes the exclusive use of two separate rooms, each for 45 minutes. This is great since the kids don't get bored and we weren't running over/into/onto a million other kids whom we did not know and, since the doors were not opening and closing all the time, we were pretty much assured that none of our kids were going to escape the premises. Other than the fact that we had to talk over the noise involved in keeping those inflatables nice and full, we adults were able to converse with one another and bounce along with our kids if we so desired.

A bunch of the girls, including Hallie, took off for the climbing wall that led to a giant slide.

This thrilled Eliza, who loves sliding and knows no fear.

A couple of Hallie's school chums and friends enjoyed the slide just as much.

Hallie, alas, was not so sure this was her kind of activity. She got to the very top, took one look at the sheer drop, and panicked (I am with her on this, by the way, but I would prefer that she grow up to be a person with considerably less anxiety than I possess so I was hoping that she managed to work things out by the end of the day). So Hallie came down but there was no way that she was going to go back up there on her own. (More to come on this later...)

Lea, who is quite enamored of slides, went down with Sharon and very much enjoyed the experience (so much so that she is now turning everything into a slide, including our very dangerous stairs, much to my chagrin).

None of this prevented Hallie from having a grand time in the first bounce room. She just decided to do some heavy jumping instead:

Here she is in one of the bouncing structures with her brother Jake:

And here's a short video clip of Jake and his mom, Gina, doing "Ring Around the Rosie:"





But all was not lost on the sliding front. Some gentle persuasion, coupled with some lap sitting and hand holding convinced Hallie that it was okay to slide down the really big slide in the second bounce room.

Here she is on Gina's lap with Jake by her side:

From the look on her face at the bottom, you can tell that Hallie had a great time:

So did Jake (who has now asked for his 5th birthday party to be held at Bounce; Gina has granted this birthday request and I know that all of our kids will be thrilled).

Hallie then began to go down while holding hands with her cousins. Here she is with Hannah:

Adam followed right along:

Sarah descended while holding Lea:

The other kids had a great time, too:

Some of the kids were a little too small or timid to make it onto the giant slides, but they also had a great time.

Here's our micropreemie friend, Maggie:

And one of Hallie's classmates, Xavier, who had a grand time shooting hoops:


And yet another micropreemie pal, Elizabeth, who had a blast on the plasma cars:

Everyone had a grand time, especially Hallie:

Then it was time for pizza.

Amazingly, this year, Hallie actually ate at her own party:



So did Lea:

More playing followed the pizza. The kids were especially eager to have fun with the balloons:

Finally, it was time for cake. Hallie put in a special request for this one (a very delicious chocolate cake layered with chocolate pudding and frosted with chocolate butter cream from Wegman's):

She was mesmerized by the candle lighting.

And did a great job blowing them out:

Hallie had a wonderful time turning four. For those of you who sent gifts, I'll be getting to the thank you notes at some point soon! At least I did manage to finally post this entry. Stay tuned for highlights of our New England road trip. I'm hoping to get to it before the fall!

Because Rachel Coleman Always Says It Better Than I Do...

If you are fighting the system to get your child services, if your child is being written off as unworthy, and if you need some inspiration about how to channel your anger into something constructive, you need to read this post....

Thank you, Rachel and Aaron Coleman, for fighting for your daughters with every ounce of strength that you had (and probably then some) and then channeling your energy into providing a resource to all of us out there through Signing Time. You guys gave Hallie the capacity to use language before she could ever vocalize and helped pave the way for us to communicate with her.

A Funny Hallie Story

We have lots of pictures (don't know how good they are) from Hallie's birthday party that I have yet to upload to my computer. But in the meantime, I didn't want to forget this funny story:

Hallie's been thrilled about going to the "bouncy castle" for her party for weeks and weeks now (I'm not sure why we started calling Bounce by this name, but it sort of stuck). Practically every days she'd ask me hopefully if we were going to her party at the "bouncy castle" and every day I had to tell her that her birthday was still a ways off. On Saturday night, when she went to bed, she knew that she'd wake up and we'd be going to her party. So, by Sunday morning could hardly contain her excitement about her impending visit to the "bouncy castle."

This only mounted once we picked up the special Dora cake (chocolate cake, with chocolate pudding, and chocolate ganache icing with a cool design and plastic Dora, Diego, and Boots figures) that Hallie had specifically requested at Wegman's. She knew we were going straight to Bounce and, in her imagination, a castle looks like, well, a castle. You know, with princes and princesses in it and turrets and those sorts of things. Just down the block from Bounce on Route 70, there's a cemetery that sports...a castle motif, complete with turrets and everything. When Hallie saw it she screamed: "Look! There's my party! There's the castle, and princes and princesses and a dragon!" Of course, we then had to explain that Bounce is not a real castle but a place with inflatable structures that she can bounce on. Since it literally was all of two minutes away (if that much) Hallie did not have time to be disappointed by the lack of princesses and had a wonderful time at her party.

It was SO clear to us that, this year, Hallie really got the idea of what a birthday is all about--from parties, to presents this girl has it down. Last year, she still had trouble sitting still for the singing of the birthday song but this year, she was thrilled to have it sung. Even better, she is a championship level blower out of candles (she got all 9 candles---don't ask me why there were so many---in a single blow). And while she was thrilled to be served the piece of cake with Dora on it (as she requested of the party attendant), she is also mature enough to share. One of the little girls from school who attended Hallie's party really wanted that Dora and started to cry when it was served up to Hallie. Hallie took notice right away and walked over to C. and handed her the Dora. While C.'s mom made C. give it back, it's the thought that counts.

What a great 4 year old you are, Miss Hallie Rose! We are so proud of you and are so happy that you enjoyed your special day!

Happy Birthday Hallie!

We just sent Hallie off to school with 25 cups of Haagen Dazs ice cream, candles to place in them, and a whole lot of Dora and Diego party hats. While I could have baked cupcakes, my capacity to decorate them with cute designs is limited (what can I say: I'll never win a dessert challenge on Top Chef?). Besides, Hallie doesn't really eat cupcakes. She'll lick the icing off of them, and she'll eat regular old chocolate cake, but if you mix the icing and the cake, it's kind of a no go. I doubt any of the kids will complain about the ice cream.

Anyway, it's extremely hard to believe that Hallie just turned 4. It's equally hard to remember a time before there was a Hallie in our lives.

The birthday celebrations have just begun (actually, they began on Sunday when Hallie test rode a new bike that she'll be getting really soon and we took the kids to the see Nickelodeon Story Time Live at the Merriam Theater. Both kids had a great time singing and dancing and following their favorite TV characters act out stories live on stage. It's quite exciting that they love to go to live concerts and events ). Stay tuned for more updates about our weekend celebrations and hopefully some pictures from the school celebration today.

"I DID IT!!!!"

I've been awfully quiet about potty training because we've not really attempted it in earnest until pretty recently. Sure, we're the proud owners of not one, not two, but three potties, plus numerous portable toilet rings (one lives at school but is no longer used; another lives in the stroller or car and is the fold-up kind; and a third lives at Grammy's house). We've owned the majority of these potties and potty-tops for over a year now and at various points in time I've considered turning some of them into planters because they were woefully underused. In contrast, we have been supporting our good friends at Procter and Gamble (parent company of Pampers Easy Ups) and Kimberley Clark (who make Huggies Pull-Ups). We are fairly certain that we've helped keep their companies afloat and are now seriously concerned about the potential for imminent lay-offs.

This is because, drum-roll please, we are now well into training Hallie to use the potty. For over a week now, we've been practicing the keep-Hallie-in-the-altogether from the waist down while she's at home and, for the past two days, have sent her to school in Gerber triple-ply 'big girl underwear'. I wasn't going to send her in her undies today because her aide was out due to an arthritis flare-up. But when I went to change her (out of her undies) after nap time, she was dry. She proceeded to use the potty and then requested that she be put back into 'big girl underwear.' I gave her a choice, but she informed me that "diapers are for babies. Big girls wear underwear." Notable here is that Hallie used to (as of three days ago) refer to her pull-ups as pull-ups or "Princess pull ups" (the Huggies kind) or "Doras" (the Pampers kind). Now, all of a sudden, she is calling them diapers again. And big girls don't wear those.

Leaving Hallie naked from the waist down has really worked for us (and for her): Hallie has been consistently using the potty (and with great glee) when she's needed to pee and is now doing so without reminders. In part I think things have gone so smoothly during this attempt (in contrast to all earlier attempts) because we've relocated the main potty (the wonderful Primo potty that has a removable soft seat and turns into a step stool that allows those under 4 feet tall to climb up onto an adult potty on their own and provides them with a nice footrest once they have assumed their perch) to our living room. While a bit unseemly, perhaps, one should remember that French noblewomen used to use chamberpots in their dining rooms whilst dining. These were pretty fancy chamberpots, too, and not our typical unadorned white porcelain ones (there are several really interesting ones on display at the Chatelet, which is the Museum of the City of Paris, in the Marais Arrondissement). Refined ladies would lift up their skirts, hop on their pots, and do their thing while never missing a conversational beat. This, of course, was facilitated by the fact that said ladies did not don undergarments; until the late 18th century, underwear (at least among the Parisian haut monde) was the sole reprieve of, shall we say, a less refined class of ladies who practiced the (ill) reputed oldest profession. (Remember, I am a European historian...)

Anyway, back to the subject at hand: once we put Hallie in panties, things do become a bit dicier: I don't think that the distinction between disposable pull-ups and washable undies is as clear to her as it is to me (while not practicing history, I do a lot of laundry). So she's had a few accidents, but how else is a girl supposed to learn? What's happened the past couple of days at school is that she doesn't quite realize she's going until it's a bit too late, and then she can't get to the bathroom in time to prevent leakage. The critical thing is that she's telling her aide/teachers that she has to go and is trying to get there in time. In the process, though, she is learning about her body and, as she does so, she is refining her capacity to hold things in.

This was driven home tonight as we gathered in bed for our bedtime stories (we are trying to integrate Lea into the book-reading-at-bedtime ritual). Part way through one of Hallie's five books (a typical evening involves reading most of the Mother Goose Rhymes collection, which Hallie has committed to memory, along with several other selections), she informed Sharon that she needed a new diaper (again, note that she did not call it a pull up). We checked and she was dry and clean. Then she insisted that she needed to go potty. And she did: Sharon and Hallie headed off to the bathroom where Hallie peed with vigor and then let Sharon know that she wasn't done. She then proceeded to poop in the potty. She was beyond gleeful. While she is normally quite proud of herself when she pees (we do lots of high fives, smiles, clapping, etc), her joy this time around was beyond anything we've ever seen. She proudly described her poop (sorry, Hallie, if you are reading this) and kept exclaiming, "I DID IT!!!!" Exclamation points were audible. So was the glee and mirth of the potty celebrants.

Anyway, we're very proud of her. I think there's no turning back on this: our girl GETS IT. I don't think that she did a month or two or six ago, but she's ready now, and she's let us know. So while we are not ditching the pull ups quite yet (they will no doubt remain useful at night, perhaps during naps, and quite likely on our upcoming long car trip to Maine), we are getting to the end of our disposable rope. And Hallie is entering a new chapter of her life, just on the cusp of four. While this may seem delayed to some, in our estimation, it's just on time. Hallie seems to us to be on the cusp of yet another cognitive leap, and this is why potty training her right now seems like the perfect time to do so.

I Gotcha!

Today was a wonderful day: my adoption of Lea was completed and the decree was signed, sealed and delivered.

Lea's adoption doesn't change anything, of course. I've been Lea's mom since before she was born (indeed, since way before she was born. I even transported her while she was a tiny blastocyst frozen in a test tube from one fertility treatment center to another when our Reproductive Endocrinologist switched practices). But the adoption formalizes my legal rights and responsibilities to Lea and that is a very, very good thing.

So, as both Hallie and Lea love to say when they jump into our arms for a big bear hug, "I gotcha!"

Ride 'em, Horse Girl!

On Saturday, Lea napped in the car with me while Hallie went off with Sharon to ride Sir G (whose real name is Sir Gawain; he's a Gypsy horse and, apparently, he doesn't really like any of his other riders but adores Hallie). Part way through Hallie's session, Lea woke up. I took her out of her carseat and let her run around in front of ARCH. Anders, pictured above, who is a very sturdy Fjord, was enjoying his lunch. Lea, of course, noticed him and screeched, "HORSIE!". I brought her over to see him and Jen, the volunteer who was hanging out with him, said that Lea could pet him. Lea pet him, and kissed him, and pet him some more. Then Jen let me put Lea on his back, which thrilled her to pieces. I ran and got Sharon and had her hold Lea while I took a few pictures.

So, even though Lea is too young to ride in ARCH's sibling program (she has to be seven to do this), she at least got to sit astride someone other than me or poor Zen.

On a related note, Lea's language is really exploding. She says five or ten new words a day and is asking for things by their name when she knows it/when she's not too frustrated to do something other than scream/whine. And she's beginning to put two words together, too. On Friday she said to me "Bubbles! My turn!" when I was blowing bubbles for her (which, as it was for Hallie, is a favorite pastime of Lea's). And on Saturday, when we were headed off to ARCH for Hallie's session, she said to Grammy (at whose place we were staying in order to avoid Saturday morning shore traffic), "Bye Bye Grammy!" How cute! It is really fascinating to me to watch a typically-developing child's language develop.

Playing Sure Helps Work Up an Appetite!

On Friday when I picked up Hallie from preschool, Lea was sleeping in the stroller. Hallie had just finished a PT session that involved a lot of running, jumping, and climbing up and down the stairs, but she was still full of pent-up energy. There were a couple of other kids hanging out on the grounds of the preschool and I know that one of the little girls is someone that Hallie has occasionally played with at our local playground (we actually have quite a few local playgrounds, but one is a mere half a block from our house so, even though it's far from the nicest of the bunch, it's the one we frequent most often). Anyway, I was hopeful that Hallie might join in with them in their play since their small number wouldn't overwhelm her. Hallie had other ideas, and while they didn't involve other kids, they did involve using her imagination.

She crept behind one of the evergreen bushes and when I came and stood next to her, she said, "look, that's a spooky forest!" Since she went on to say, "look, there's the Boots the Monkey!" she was apparently referring to a Dora the Explorer Halloween special that aired last about nine months ago. I can't confirm this since I have nowhere near the prodigious memory that Hallie possesses. But never mind: in what I think was good Floortime form, I shouted, "look, there's a ghost!" and proceeded to make all sorts of scary goblin ghoulish noises. She thought this was hilarious, and the whole thing ended up turning into a big game of chase with sound effects.

Then we went on to play Hide and Go Seek. She still doesn't get the idea of hiding when it's her turn to do so, but she gets a kick out of looking for me (I do, however, suspect she's peeking since she seems a tad bit too good at this game). We raced around and hid from one another for quite some time.


Just as Lea awoke from her nap, Hallie asked if we could go get ice cream. This has turned into a ritual of sorts: at least once a week she'll request ice cream--chocolate, of course--and we'll head off to the Haagen Dazs shop on South Street for a kiddie sized cup. This time, however, Hallie requested a cone. She's never requested a cone, let alone eaten one before, and I was happy to indulge her.

Hallie did not quite get that you are supposed to leave the napkin wrapped around the waffle cone to catch the drips. Nor did she actually eat the cone. But she loved holding it. Ultimately, however, things got too messy to eat that way so I dumped the remaining contents of the cone into a cup and Hallie proceeded to devour the remnants of her treat. Start to finish it took her less than 20 minutes to eat about 4 ounces of ice cream.



This was, of course, far from a neat prospect. She ended up wearing quite a lot of the creamy chocolaty stuff:




After Hallie was done with her ice cream, Taylor and Renee joined us. The girls were thrilled to see each other for the third time this week. We ended up having a grand time at Three Bears Playground, which was virtually empty. Of course, it was about 6:00pm, which is probably prime preschooler dinner hour. Hallie had already finished up her 'dinner', which was the ice cream. She did go on to eat a couple of slices of bread and butter when we got home later on but I think most of her calories came from the ice cream. As of her last weigh-in a couple of weeks ago, Hallie tipped the scale at 34 lbs, 5 ounces and we are hopeful that she might keep it on this time. I think Haagen Dazs must be responsible for at least a couple of pounds of this healthy weight (Hallie is at the 50th percentile for weight and 90th for height---she is now just shy of 43 inches tall).

Fun at the YCCA!

Yesterday evening, Hallie's preschool, the YCCA, held its annual Family Fun Day. It's one of a series of fundraisers that they hold in the spring so that they can do important things like upgrade their facilities (they recently did a complete renovation), buy excellent new toys (they own most of the Lakeshore Learning catalog from what I can tell, and this is a good thing), install air conditioning in their 17th-century building, and other fun stuff like that. We're thrilled to participate because, really, these events are a ton of fun. And, most importantly, let's not forget that the YCCA is one of the few preschools of which we are aware that's not just willing to tolerate a special needs kid (often implying that this is true as long as they are not too needy), but are actually inclusive by mandate: the school director, who is a trained music therapist and special educator, long aspired to open a preschool that welcomed kids who were not developing in completely typical ways. I dare say that she has achieved her goal: long before Hallie was willing to say a single word at school, Hallie's teachers made sure that she was not left off on the sidelines but that she actually was central to her peer group. As she's begun to speak more at school, they make sure that she is heard even though her voice is raspy and faint as a result of her vocal cord paralysis. They don't see a kid on the spectrum whose eye contact could be better and who can't really hold an age-appropriate conversation. They see, and appreciate, a little girl who knows the name of every animal and insect and sea creature out there; who has a prodigious memory; who loves books and stories and who is beginning to read; who knows a great deal of ASL (she still uses it with us and several of her teachers sign while they speak or sing); who loves art even if she has little strength in her fingers and cannot use a tripod grasp; and who, by their account, is one of the sweetest and most helpful kids out there who always gives instruments to peers who lack them during music time and who brings joy and unbounded enthusiasm into the room with her when she shows up at school. Of course, they also highlight her exceptional clean up skills; we see little of this at home but, then again, she's never playing teacher's pet at home, either. This, like clean up monitor, is a role that she reserves for school. I suspect that they are related.

Anyway, Hallie's buddies Taylor and Alex joined us for the evening.

Here are a couple of pictures of Kim and Taylor hanging out on the grounds of Old Swede's Church:

And here's one of Alex waiting patiently for her face to be painted by Hallie's teacher, Kristen:

Hallie was happy to watch the whole process unfold and she really liked some of the designs, but there was no way in the world she was going to allow anyone to take a paint brush to her face!

Lea, however, might have been game for it; she certainly took active interest in it:

While face painting was interesting, the real highlight for our kids was the Ernie and Neal concert that the school had booked. From the moment she saw the musical instruments and heard the band warming up, Hallie's attention was riveted. While everyone else was chowing down on hot dogs, pretzels, and hummus and pita (which, of course, hold very little interest for our girl), Hallie was rocking out and dancing to Ernie and Neal's opening numbers.

Apparently, this was not lost on the duo. While I was off chasing Lea, they called Hallie up on "stage" and asked her to play lead air guitar on one of their numbers. Hallie was happy to participate:

Sadly, my skills as a videographer are limited, to say the very least. So, not only do you have to ignore the smudge in the lower right hand corner of this video, but you also might need a dose or two of dramamine. Apparently, having a PhD does not, in fact, provide one with sufficient common sense to realize that bopping up and down while taking a video is perhaps not the smartest thing one can do. On the upside, though, I did manage to get the entire song on digital video:




Later in the evening, a ladybug jumped onto Sharon's shirt and when we showed it to Hallie, she was thrilled and wanted to hold it.

She walked around with it for quite some time until it decided to take flight.

We left at 7:30pm; by then the kids were a hot and sticky mess and covered in water ice and assorted grime. Hallie, Alex, and Lea (and Sharon, Sheila, and I) headed over to our house where I threw the kids in the bathtub and awaited pizza delivery. Bedtime was not terribly late last night, which is a very good thing.

On an only tangentially related note, here are some pictures from the Memorial Day picnic that was held at the YCCA on the Friday preceding the holiday weekend. The school regularly takes pictures of stuff like this and uploads them to a gallery that parents can access (and from which they can also download). We really like this feature.

Whoever took the pictures got some nice close up shots of Hallie.

They also took some group photos of our girl and her peers.

These two are notable because Hallie ordered, and apparently ate at least part of, a grilled cheese sandwich. We only occasionally serve her this (with mixed results) but maybe she prefers her teachers' cooking to mine?

Happy Memorial Day!

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

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





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





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

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

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

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

Lea the Imp

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

First, there's her fashion sense:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

IEP is Done!

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

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

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

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

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

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

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

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

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

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

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

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

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

The Things Hallie Can Do

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

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

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

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

From My Videos

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



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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Happy Mothers' Day!

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


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

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

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

We Are Aware of Autism

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

Those days are gone.

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

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

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

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

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



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

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

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