How Old is Hallie?

Lilypie Fifth Birthday tickers

How Old is Lea?

Lilypie Second Birthday tickers

Friday, July 30, 2010

Because You Can Never Be Too Careful

Six pairs of undies are always better than one, don't you think?
Hallie very well might be starting some sort of fashion trend here:

Monday, July 26, 2010


Yesterday, the kids climbed up on the little red bench that Lea adores perching herself upon to enjoy their beverages. (Thanks, Anne, for the desk and bench--Lea uses it all the time!)  Hallie had her hand wrapped around Lea and they looked so adorable that I had to snap a picture.

NOTE:  Hallie is dressed in long sleeves in this picture.  She picked out her own outfit after her bath and dressed herself completely, so who could quibble with her choices even on a day that started out in the high 90s and was extremely muggy?  Apparently she knew that the storm that had delayed the completion of the Phillies game (resulting in an eventual, nail-biting win for the home team) would also lower the temperature considerably and that the place we'd chosen for dinner would have its AC turned up full blast?

Sunday, July 25, 2010

Potty Training Update

It's been a bit of an up-and-down week in the land of potty training Hallie.

While Hallie is apparently more or less fully trained at school, her performance on the home front has been a bit more checkered. We've been sending Hallie to school in 'big girl underwear' for about six weeks now.  (We are still using the extra thick Gerbers' undies that are very soft and more absorbent than the cuter princess and Kai-lan panties that Hallie has in her drawer.  Hanna Andersson is rumored to make excellent training pants, too, but at about 400% the cost of the Gerbers', these seem a bit too much of a splurge, particularly considering that we need about 10 clean pair of these on hand at all times just in case). Since summer camp started at the beginning of July, she's had two accidents at school, I think, and those were both in the first week.  They are on a fairly regular potty-break schedule at school (all of the kids are asked if they need to go at the transition from one activity to the next, and these transitions take place every half hour or so).  And I am sure the sheer visuals help the teachers figure out who needs to go on off times since four year olds have an uncanny way of pulling at their crotch when they really need to get to the bathroom.  But Hallie has also asked her aide or teachers to take her to the bathroom a few times in the past week and none of these were false alarms (signaled by Hallie in an effort to avoid undesired activities). 

This is all wonderful.  I still pack four outfits for her each day but these are beginning to seem a bit like overdoing it and I'm going to consider scaling back to three pretty soon.

Home potty training, however, has been a bit more hit or miss.  We began this whole adventure by using the strip down approach where we have Hallie stay naked from the waist down (sometimes complemented by a waist up strip that leaves her streaking through the living room with the exception, perhaps, of high heel princess shoes, cowboy boots, or some other accessory.  Visuals omitted to prevent parents from being referred to DCFS, of course).  This works like a charm and Hallie has no accidents when we do this.

But she cannot remain naked at home forever (we hope). So we have been trying to keep her clad (sometimes we lose this battle for sensory reasons) most of the time now.  And this has been a bit problematic on the pottying front.

We continually (and I do mean continually) ask Hallie if she needs to go when she is wearing undies at home, and quite often she'll respond in the negative.  And then go anyway.  Even in cases where we just her on the potty (which is situated in the living room still so as to not add in the problem of her having to take a break from a preferred activity) for an unproductive session, she's been wetting herself almost immediately after we help her pull up her pants.

This is a bit vexing, to say the least.  On Friday, after Hallie emptied her bladder immediately after returning home from school (and being asked if she needed to use the potty, a question to which she emphatically responded "NO!") and then again peeing on herself while in her current favorite costume (a very warm dalmatian costume that you could not pay me enough to wear on a day when the temperature was in the high 90s).  I let Hallie know that I was disappointed and upset after the first accident (exaggerating my response so that it would be clear to her) and demonstrated to her that I was even more upset the second time around.  We're working on feelings right now (and Hallie is really beginning to understand these, so much so that she is more often demonstrating appropriate empathy when Lea gets hurt and fashioning some creative, good responses to Lea's crying -- like offering her a water bottle or getting her a bandaid -- that actually are quite helpful).  So Hallie definitely got it.  But what we're hoping she gets even more is that she is not going to be seeing that (now laundered) dalmatian costume until she spends five days accident free.

I am happy to report that we just completed day two of this experiment.  Perhaps her bladder control is coincidental, but she's managed to take a long round trip car ride (about an hour in each direction) to and from hippotherapy on Saturday and went out to dinner and dessert with us and her lovely cousin Sarah, who was down for the weekend, and stayed clean and dry the entire time.  She asked to go to the potty three times at dinner/dessert and actually peed two of those times (the third time we think was attributable to the fact that the historic saloon in which we ate dinner had pretty cool bathrooms with a lot to look at--and flush).

Also interesting to us is the fact that Hallie has woken up with a dry pull up two nights in a row.  I think this has more to do with the fact that she went to bed pretty late on the eve of both of those events and hence probably emptied her bladder fully before bed.  I have no aspirations at this point of attempting to night train Hallie any time soon.

So hopefully Hallie's gotten the message about needing to win back the dalmatian costume.

I find it interesting, though, that all of the problems we are having are at home.  One theory (to which Sharon subscribes, I think) is that the root of the problem is that we've been keeping Hallie stripped down at home and that this has allowed her to become a bit lazy.  Because she's naked from the waist down, she continues to dribble out her pee (which is what babies do before they have bladder control) on the potty any old time and is not self-aware enough to keep it in at home when she's got underwear on.  This seems plausible but is only part of the story, I think.  I think that another component of this is that she is so exhausted--mentally and physically--once she gets home from school that she loses it a bit (we see this with other behavior, too).  She expends so much time and effort controlling herself--staying on task, engaging with kids and teachers and therapists, and also holding her bladder--that she just can't do it anymore when she gets into our house.  Our home is a safer place for Hallie to let go, literally and figuratively.  I think she gets that we are here for her no matter what; she's not particularly in need of winning our love and respect since she already has that; and she's probably less embarrassed at having an accident at home than she is at school.  While she is beginning to understand that her behavior sometimes disappoints us (and she responds appropriately by getting upset herself), I imagine that she still feels safer with us than she does with anyone else (at least I hope so, because that is a good thing).  So I'm willing to cut her some slack (even if I really won't return that costume to her until the five days have been checked off).  She's come a long way in terms of this potty training thing (and so much else) in a very short period of time.  So we'll plod on and try not to get too disappointed by the fact that we're still only 80% there or so.

Friday, July 23, 2010

Road Trip 2010: Part One

This post is WAY overdue, but we've been kind of busy around here. (I know: excuses, excuses).

Anyway: back at the very end of June, the kids, Sharon and I, and our wonderful niece Sarah headed to Maine for the wedding of my close grad school friend, Marc, and his long-time partner, Jorge. Marc and Jorge had already gotten hitched in Toronto, CA, where Marc teaches and where it's legal for same-sex couples to wed. They were hoping that the state of Maine would evince a level of enlightenment similar to that of its northern neighbor, but, alas, no such luck. So their second ceremony was held in a location where gay and lesbian married couples dare not speak their wedded name.

It was a lovely occasion, and the newly re-weds make a ravishing couple:

But more on Maine in a bit.

The drive from Philly to Maine is not one that we could have done without stopping on the way. Nor is it one that we could have done without borrowing Aunt Laura's minivan, which is equipped with seating that accommodated all five of us (having been an occasional desperate rider squished between the two carseats in the second row of our Hyundai Tucson, I can assure you that I am personally quite grateful for Aunt Laura's generosity in lending us her van). Not to mention that Aunt Laura has a DVD player, which made the ride all the more enjoyable for the kids (though after a million re-plays of Laurie Berkner and Jack's Big Music Show DVDs, I am not sure that I feel quite the same way).

We left after Hallie was done with school on the ultimate Wednesday in June (about five hours after we expected to depart) and high-tailed it up to Mystic, Connecticut, for our first leg of the journey. Hallie was awake the entire way but Lea slept for the majority of the drive (after being a very irate passenger for the first hour or so. Lea is not a happy backseater and is not nearly as fond of DVDs as is her older sister).

For the girls, the highlights of our hotel stay revolved around running the halls (which I am sure made us very popular with our vacationing neighbors; we did make sure this running happened only during day time hours, though) and riding the luggage carts. Here are some pictures of our arrival at our hotel in Maine, so it's technically out of order, but it should give you an idea of the nature of the sport:

After getting in late on Wednesday night, we took our time waking up and eating breakfast on Thursday morning. Amazingly enough for our brood, though, we managed to be out the door by eleven. Our first vacation day was spent at the aquarium:

We saw manatees:

Here Sarah and Hallie are posing by the manatee exhibit, which was the first place we visited:

Our kids have a big thing for penguins, so we spent a decent amount of time at that exhibit:

And did our best to pick out the frogs who hid among the lily pods:

We visited the sea lions both outside and watched them perform their very cool tricks indoors:

Lea slept through part of the sea lion show but Hallie was thrilled by it and wanted to get a closer look at the sea lions when the show was done:

After the sea lion show, we took a break for lunch. Amazingly, Hallie ate nearly two slices of pizza and polished off a chocolate ice cream. All that looking at sea creatures really worked up an appetite in our reluctant eater, I guess:

Then it was off to the indoor exhibits, which include jellyfish:

And regular fish:

And turtles:

And lots and lots of sharks:

The aquarium also sported touch tanks and both of the kids indulged (and exhibited approximately zero fear, even when it came to touching sharks and slimy creatures).

Here's Hallie waiting for the sharks to come by:

Amazingly, given how sweet Hallie is, they were not biting (thank goodness! They are really, really small sharks, though, so I think Hallie's hands would have coexisted with them peaceably had they not gone into sensory overload--sound familiar?--and shut down for the afternoon).

But, fortunately, there were other opportunities for touching things. Hallie made a bee-line to the exploration tanks where she grabbed hold of a starfish and lifted it out of the water within seconds of our arrival. I did not get a shot of this because I was too busy getting her to put it back (as the signs noted that lifting the little sea creatures out of the water was a big no-no).

But I did get a shot of her swooping down for a crab, which she touched with much glee:

Here she is trying to get in on the action with the little boy next to us who rather annoyingly kept reminding me that the kids weren't supposed to lift the creatures out of the water:

Now it's Hallie's turn (and my turn to remind the little guy who was probably in the vicinity of 8 or 9 that Hallie was merely 4 years old and very excited):

Of course, once the touching was done, Hallie needed to wash her hands (it was like she suddenly became aware that all of those fish and creatures were pretty slimy; this is kind of her MO. She will often eat her meal, which involves buttery toasts or french fries or chocolate ice cream quite frequently because those are three of the seven or eight things that she will reliably ingest, and then suddenly come to an awareness that her hands are REALLY dirty, slimy, or greasy and need them cleaned IMMEDIATELY. It's a weirdly delayed reaction, but at least this means that she will comfortably try new things (unless it's food) and eat those foods even though they send her into eventual sensory overload).

Speaking of sensory overload, we did have a bit of a potty-training setback that began during our Connecticut leg of the road trip. We put Hallie in underpants for the aquarium and she did wonderfully for the first half of our stay. She let us know (sometimes by grabbing at her pants and once by telling us) that she had to go and we made it back to the bathrooms in time even when this involved some sprinting (thank goodness for the sit-and-stand stroller we brought along with us since I am a bunch faster than Hallie is when it comes to racing to the potty). She peed after lunch and before we headed into the fish tank area but did not quite make it to the potty in time when she needed to poop. No big deal: we were well-equipped with wardrobe changes and life went on.

The real issue we faced vis-a-vis pottying ties back into the sensory stimulation stuff. After returning from the aquarium, we went out to the hotel pool for a bit. This, in retrospect, was not the smartest thing to do. While the pool was nice and empty (a good thing), it was also getting chilly out since it was fairly late (around 5pm, and Connecticut's shoreline is a lot cooler in the evening than the city of Philadelphia tends to be). So while the pool, being heated and all, was pretty warm, the air outside was not. We played for a bit and Hallie enjoyed swimming (so much so that she did not want to get out and change for dinner. And let us know this in no uncertain terms by jumping into the water at about five feet or so of depth after the rest of us had gotten out. This did not please me, to say the least, and while she was fine since she was wearing a personal flotation device, it provided me with yet another reason to be helicopterish and, even more importantly, underscores the need to get her private swim lessons pront0). Anyway, I digress. So, we pulled her out of the pool and wrapped her in a towel and headed back to our room.

Of course, keeping Hallie wrapped in a towel is no easy feat, and, regardless, the hotel lobby was chilled to a frigid temperature (at warmest), so Hallie's teeth (and mine) were chattering during the walk to the elevators and the walk down the second floor hall to our room. When we got there, Hallie needed to pee and so we took her to the bathroom right away. The second she began to do so, though, she got frightened by how hot her pee was next to her cold, cold skin and started yelling that it hurt. We worked through this (we thought: more on this below), got Hallie dried off and into clean clothing and headed off to a rustic lobster dinner by the docks of one of the neighboring hamlets.

Hallie enjoyed dinner (even if she did not eat much. Certainly no lobster, but she did have part of a hot dog, part of a bun, and some potato chips, which all in all was not bad). She played with the toys we brought, was thrilled to see the family of skunks living under the docks (we were not and were thankful that they did not spray us, even as we were not grateful to the mosquitoes who decided we were tastier than lobsters). And most importantly, given the earlier events of the evening, Hallie did not try to jump in the water, which was a great relief to a very panicked me.

Having Sarah with us was great, and not just because she could take some pictures while I ran around after one kid and Sharon ran around after the other. We were thrilled to treat her to her very first lobster dinner, which she enjoyed thoroughly (even against the overtones of my seething anxiety about Hallie's penchant for jumping in the water when expressly forbidden from doing so). Here's a lovely picture of Sarah in the sunset by the dock:

Anyway, when we got back to the hotel, we were thrilled to find that Hallie's underwear were still dry. This thrill, however, abated when she refused to pee before putting on her pull-up and pajamas and getting in bed. Once more she began to scream: "It's hot! It hurts!" And she would not go.

At 3am or so, she woke up, once more screaming that she was hot and it hurt and would not pee. And her pull up was bone dry.

By this stage, we were a bit worried about what was really going on. She had been holding it in since at least 7pm (so 8 hours or so) and, given that she was a recent embarker on potty training and does not reliably wipe in the correct direction, I began to think that Hallie had a UTI. She did not seem to be running a fever (which is a usual symptom, something we learned from Lea's forays into the wonderful world of UTIs), but it's possible to have an infection without spiking one. Not to mention the fact that we did not have a thermometer with us so we couldn't exactly confirm that Hallie was fever-free.

Being the preemie mom that I am and having memorized our pediatrician's number (and of course having it on my list of contacts on my phone just in case I have a brain blip), I decided to call the excellent after hours folks to see what they thought. I detailed Hallie's 'symptoms' to the nurse and she advised that, if Hallie did not go by morning, we needed to get her to an ER for catheterization pronto.

Now this is not a fun process (having lived through three failed attempts to cath Lea at our ped's office this winter, I speak with some authority on this manner) even when you are not a few hundred miles away from home. It is even less fun if you have to ponder the relative merits of driving an hour back to Yale/New Haven, an hour and a half up to Providence, RI, or a couple of hours up to Worcester, MA to visit a pediatric hospital versus finding a doc-in-the-box in Mystic who might or might not have experience catheterizing special needs kids.

I spent the next several hours awake contemplating these options and downloading screen shots from google maps that would help us locate one or another of the places we might visit while on vacation (!!!) and praying that Hallie hurried up and peed in her pull up (which is not what most parents actively engaged in toilet training their kiddo usually wish to do).

Morning came and Hallie woke up. Thankfully her pull up was soaked (and I mean soaked) at this point.

We took her potty (as we usually do in the morning upon awaking) and once more she screamed about how hot it was and how it hurt. And that's when it dawned on us that the whole issue was a sensory one, and not a medical one.

The downside: potty training took a major step back for the balance of the vacation (though she did evince a willingness to try to go potty again after a few more days of this).

The upside: we did not have to cut our vacation short or acquaint ourselves with the medical options available to us when on it.

In the end, everything worked out and we had a great time on the balance of the trip (during which we not only got to go to a fabulous wedding but also got to meet some fabulous 23 weekers), but all of that is going to have to wait for my next post...

Wednesday, July 21, 2010

So Hallie's new OT (subcontracted through the subcontractor who handles 3-5 early intervention services in Philly; don't get me started on how badly the transition is going from the old service provider to the new one because this is a saga in and of itself) was just at the house for the first time this morning. She seems to be on the ball (was one of the people who helped establish improved early interventions services for the 3-5 kids in NYC 12 years ago) and had lots to say. Alas, none of what she had to say made me feel any better, though.

The first thing she noticed was how low tone Hallie is throughout her entire body (which we've obviously heard before). But what surprised her is that Hallie has never gotten rid of her infantile reflexes and is doing some stuff that a 6 to 10 month old still does (mirroring actions with both hands when one will suffice is one example of this). No one has ever mentioned this before and consequently no one has ever worked on getting Hallie to respond more maturely. On top of this, she noticed that Hallie was not visually tracking or processing properly and that Hallie was more or less functioning at a delay of 50-75% (so at the level of a 10 month to 2 year old). This shouldn't surprise us, I suppose: both Sharon and I have noticed over the past few weeks, especially, that Lea's movements are more fluid and coordinated than Hallie's and that she can do more stuff than her sister can. Lea turns 18 months in 10 days.

She was appalled at Hallie's IEP and is going to put in for more services---which was what I advocated for when we held Hallie's last IEP. At least this time I'll be getting some support from the OT, who is personally going to advocate for this and arm me with much more detailed developmental charts detailing precisely how far behind our kid is in concrete and explicit terms. This should help me make my case.

But it's so damned frustrating: we are doing everything we possibly can and are great on follow-through but if the 'professionals' who see Hallie aren't doing their jobs and 'dumbing things down' (for example, no one ever told me that a 4 year old is supposed to be able to jump forward 24 inches and land on two feet. Hallie just mastered jumping forward 6-8 inches and landing on two feet, which is what a new 3 year old can do). Apparently her OTs and PTs have been treating the symptoms more than the underlying causes and it makes sense to me that one needs to treat the base of the problem and build from there rather than treat the problems that the underlying weaknesses engender. That's what we do in Floortime, and that's been key to a lot of gains for Hallie this past year (BTW, she is doing amazing pretend play these days with scenarios that she is initiating with us, which thrills us no end).

Anyway, I hope that the new OT can actually help us get Hallie the appropriate services at the appropriate level. I suspect this may take some fighting, and I'm good at that (even if it's exhausting to me). Hallie's a bright little girl whose weak little body doesn't work in the way that it is supposed this. This is getting in the way of progress, and from what the OT said (and again, this makes enormous sense), her physical problems will engender cognitive problems (I suspect that this is at the root of her autism diagnosis, which is again a point that our Floortime/DIR guy is fond of making).

It's just so hard to see/hear all of this and I feel so helpless in the face of everything. I know I'm just wallowing a bit right now and that Sharon and I will do what we need to do to help Hallie--that's what we always do. I just wish it were easier sometimes.

Sunday, July 11, 2010

July 4th...Fireworks Up Close and Personal

Please don't ask about the title. We will reveal nothing except that we're not going to do this again next year.

But the pictures are wonderful, even if taken with my iPhone (which has no capacity to zoom).

Do note the haze of smoke surrounding many of the shots, though, when trying to piece together the narrative surrounding this particular (mis) adventure.

I hope everyone out there had a happy, safe, and quiet Fourth of July!