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Friday, August 28, 2009

Fun Times with Brothers!

Part of what has made this summer so much fun is that we've not only provided Hallie and Lea with the opportunity for playing with their cousins pretty much every weekend, but we've also managed, somehow, to get the kids together with their siblings. There is, of course, the famous July 4th reunion. But our fun didn't end there.

As regular readers know, we've been lucky to have Jake and Gina in our lives. It's hard to believe that we've only known them a year (we first met at Jake's 3rd birthday party and he just turned 4 this past week) since it feels like we've been in each others' lives forever (in a good way, naturally). Anyway, we enticed the dynamic duo up to Philly on the first Sunday in August to accompany us to the Academy of Natural Sciences, which is a small, pretty user-friendly natural sciences museum on Museum Row (Ben Franklin Parkway) in Philly.

It's a taxidermists dream, too, so if you are a three year old who loves running around saying things like "tiger!" "zebra!" "bear!" and "antelope!" while your mothers have serious qualms about the life-like manner in which these specimens have been stuffed, you are in the right place. They also have a very cool butterfly exhibit where butterflies (live, not stuffed) fly around you in the tropical rain forest environment they've provided for them and where you can watch butterfly larvae and cocoons ripen and hatch. But the best feature is the third floor (which is mysteriously hard to access) which is a hands on place where children can explore the natural world. It's called Outside In and the kids thought it was pretty awesome. There are always several live animals wandering around (well, not really wandering so much as taken out of their living quarters regularly by handlers who help facilitate petting and such), skins and shells of creatures that kids can touch, rocks and stuff like that to play with, and a big giant sandbox. Oddly, no sand tools are provided but that did not prevent Hallie from innovating: she grabbed some creature teeth and shells and imported them to the sandbox and began digging away.

There are also lots of books and puzzles about the natural world in bookshelves in a nook for the kiddos to read and do.

Hallie enjoyed petting the turtle and bunny rabbit but she was particularly fond of holding the hissing cockroach. Yes, I kid you not.

All that digging, running, puzzle-completion, and cockroach petting worked up our kids' appetites and so we headed over to Jones, which is a Brady Bunch-themed comfort-food restaurant in Center City. The kids were well behaved and so the adults actually got to eat. That doesn't mean they didn't have fun, of course. Gina, ever the prepared mother who puts the two of us to shame, had barrels of monkeys and crayons and such for the kids. And the kids made their own (utterly harmless and entirely amusing fun). Here's a shot of Jake being silly (and, no, that is not his beer bottle, but it is his ice cream sundae):

And Hallie copied everything that her big brother Jake did, including feeding herself a huge amount of applesauce. She topped off a couple of pieces of her goat cheese, a bunch of fries and a lot of applesauce with a humongous portion of chocolate cake:

It might not have amounted to the most balanced meal in the universe, but we were thrilled, as I am sure any parent of a food averse not terribly enthusiastic preschooler would have been. (We were equally ecstatic that the cake, which no doubt contained a vast quantity of cow dairy and eggs, stayed down. That's happening more and more lately and, in passing, let me mention that we are now on 162 vomit free days this year and hopefully many more to come).

The kids all posed for a nice shot with Sharon and me before Gina headed off to New Jersey with brother Jakey.

The following weekend, Gina and Jake were headed right back to our neck of the woods. Rebecca was passing through Philly with brother Ben and we all met up at Franklin Square Park.
The park, which is the site of a pretty recent addition to Philadelphia's playgrounds, is one of the five original squares laid out by William Penn and features a carousel, a sand castle, miniature golf, and a bunch of other fun stuff.

The kids climbed on the climbing structures (some of which are quite awesome but a bit beyond Hallie's gross motor skills and confidence level) and swung on swings:

Jake ascended the climbing structure with aplomb:

Hallie loved the slide, of course:

But she did not quite get the tilt wheel thing (I have no idea what it's really called) that Ben adored so much:

They all rode the carousel multiple times:

Here's a shot of Ben on a rearing elephant, which was his absolute favorite creature:

But the most fun they had was during the "water event." It's not entirely clear to me why the park workers (likely volunteers) had devised elaborate games for the kids, who were mostly ages 3 to 6, but our kids had no problem whatsoever ignoring the rules they laid out for the water balloon toss and the water emptying race (which amounted to sponging up water in one bucket and emptying it into another. Fastest team wins). Instead, they decided that shattering water balloons and having them splash all over the place was a heck of a lot more fun than pummeling your brothers with them:

The trio grabbed more than their fair share of the water balloons but no one seemed to mind:

And they got a real kick out of standing and splashing in the tubs:

My sense is that the parks volunteers should have organized a game called "dump water on your siblings":

When we left the playground, all the (older) kids were wet, happy, and exhausted. That is as it should be.

In closing, it's lovely to see our extended family. Hallie gets a real kick out of seeing these pictures (she was standing over me on the chair as I wrote part of this post and kept narrating it in her one-to-three-word-construction fashion). And we hope there are many such get-togethers to come.

Wednesday, August 26, 2009

Fun Time With Cousins!

While we've been doing a lot of hard work around here, between Floortime/DIR, Occupational Therapy, Hippotherapy, and pre-school based OT, Speech, Special Instruction, and now, finally, Physical Therapy, we've also managed to provide the kids with an extremely fun-filled summer. One of the reasons we decided to do Hippotherapy at ARCH is because it's located a few minutes away from both Grammy's condo and Aunt Laura and Uncle Bryan's house. To avoid shore traffic, we leave right after dinner on Friday nights and spend the night at one or the other of their homes and drive the ten minutes (usually running late) to Hallie's session on Saturday afternoon. Then, most weekends, we hang out with the cousins at Aunt Laura's house or the pool to which they belong and the kids get to play with one another. This is a vast improvement over the once a month or so (and sometimes less) that we were able to get the kids together last year.

The first week we did this, upon our arrival home in Philadelphia on Sunday night, Hallie spontaneously turned to us and said "Fun time with cousins!" She keeps saying this every time she sees them but now sometimes recounts what it is that they did together, be it swimming, swinging, going on rides at the Ocean City boardwalk etc.

Here's one nice picture of the little girl cousins:

And here's one of all the little cousins:

And here they are on the Ocean City boardwalk (with big cousin Sarah's legs and part of her torso in view, too...sadly we can never get a shot of all six of the cousins together in one place at the same time):

In this one, Hallie is making eyes at Adam, with Hannah in the background, at Mack and Manco's Pizza on the boardwalk.

It turns out that Hallie really enjoys Mack and Manco pizza. We've been giving her some regular dairy products lately (just watching to make sure she does not overload her system and that the reflux is in check) and she definitely is grooving on pizza, cake (chocolate cake is her favorite...we mostly opt for Amy's quite tasty Vegan Chocolate Cake which is moist and yummy and readily available at Whole Foods and Essene market, but we have been pretty willing to have her eat any chocolate cake at all...more on this in the next post), and some ice cream. That night on the boardwalk, Hallie ate a little pizza and enjoyed licking a soft custard cone with jimmies.

She also had a great time on the rides at the boardwalk. Driving the firetruck and riding the carousel were her favorites.

Anyway, all this fun time with cousins stuff made this past weekend a bit sad. The cousins were off camping and there was no one with whom we could play (our other Jersey-based friends and siblings all being spoken for, too). So we were going to just go down for Hippotherapy, spend the afternoon with grammy doing something fun, and then head back up to Philly. Or so we thought...

Saturday afternoon, we had a nice time at the Castle Park in Egg Harbor Township. Both kids enjoyed swinging and Hallie enjoyed climbing up the wooden structures to the tall 'curly' slide.

By the time we got back from the park to Grammy's, it was clear that major storms were heading our way. After wading (no other word works) through the flooded roads from the shore to the Princeton area to visit our friends Anne and Eliza Grace a few weeks ago, we weren't really willing to brave this again. So we decided to have dinner and stay the night at Grammy's.

We're really happy that we did. As it turns out, Aunt Laura, Uncle Bryan, and the cousins experienced a lot of storms themselves while camping. The first night and day were fine, but the second storm came on suddenly while they were away from their tent, which was open to the elements so as to prevent the internal temperature from reaching sizzling proportions. All of their stuff was flooded and needed to be dried out thoroughly. When it stormed yet again on their penultimate vacation day, they decided to cut their losses and head home (and in the process experienced flooded and closed roads that scared the bejeezus out of Aunt Laura, who was doing the driving of one of the cars---they needed to take two to accommodate all four kids, both adults, and all their stuff. Poor Hannah will probably never settle for less than a five-star hotel with 500TC sheets and a jacuzzi on future vacations).

Anyway, they came home on Saturday evening and were available to play with Hallie (and Lea, who slept more than played) on Sunday.

We decided to take the brood to Storybook Land for a fun afternoon. I had no idea that the rides were going to be so kid-friendly and the venue so comparatively uncrowded and appropriate for ages 3-6). The kids had a grand time.

They drove a classic car around the park:

They enjoyed the ferris wheel:

Hallie, Adam, and Hannah really liked going up the Jack and Jill hill and sliding back down again.

(Aside: Hallie was just peering over my shoulder looking at the pictures as I inserted them into this post. She named the rides and attractions and her cousins and then said "Tea Cups". The thing is, that I don't have a picture of the "tea cup" ride that she took, over and over again, on Sunday with her cousins. She just remembers that she did this with them and that it was fun. Hallie's memory and attention for detail never cease to amaze me).

Speaking of tea cups, Hallie, Adam, and Hannah also posed as the White Rabbit from Alice in Wonderland:

But as much fun as all that was, the trio REALLY grooved on the dragon roller coaster. Hallie thought it was hilarious and the sound of Hallie's scream morphing into uncontrollable laughter was enough to quell Sharon's nausea at accompanying Hallie on the ride (though she did add that Aunt Laura, who loves roller coasters, gets to join Hallie when her roller coaster needs advance to something more challenging).

And, speaking of Sharon, the whole visit to Storybook Land was kind of a walk down memory lane for her. Back when she was in high school, both she and Aunt Laura worked at the site, operating rides and such for the kids. The amusement park (which is family run) is open from Memorial Day through Christmas, and hosts events like Hallowe'en trick-or-treating and Thanksgiving and Christmas Pageants for the kids. Given the theme of the park--children's stories and nursery rhymes--they require well-suited human stand-ins to act out the parts in parades. Sharon's complexion and dark hair made her perfect for this part:

She was slightly mortified that I made her pose for this shot and that I promised to blog about this. But what I cannot wait to do is figure out if we can find a digitized version of the Atlantic City Press's article covering her appearance as Snow White back in (gasp!) 1988.

Tuesday, August 25, 2009

Not Merely Shameless Self-Promotion...

I did the interview for this piece by Laurie Tarkan that appeared today in the New York Times because the mainstream media is so much more comfortable talking about miracle babies when they do pieces on micropreemie parenting than they are discussing the realities that we and our kids face.

The article's author really 'got it' and I salute the extent to which she did not sugarcoat our experiences. None of what we went through back in the NICU or go through after our kids are home detracts one iota from the love we feel for our children, but it does change who we are as parents. Having the New York Times profile this is a very good thing and hopefully there will be more stories like this one.

Saturday, August 22, 2009

PT, Orthotics, CP Rant

I interrupt the generally upbeat tone of this blog to do a bit of ranting.

Finally, two months after Hallie's IEP went into effect, she finally started getting PT at school this week (which is the last week of camp, so now she has to wait another two weeks to see the PT again). The PT took one look at how she walks, runs, climbs stairs (tries to climb, really), jumps, etc and said that she was very concerned about her gait and that she believed that Hallie had mild left hemiparesis and needed orthotics.

This makes me upset and stinking mad. I have been telling everyone who is remotely involved (Early Intervention, Hallie's ped, the developmental pediatrician) that I thought that Hallie needed PT and that I was worried about her left side. I go to the playground and run around with the kid all the time and I know how often she falls, how far she's fallen behind on the milestones, how much it hurts her or tires her out to do a lot of the stuff that kids her age can typically do, etc etc.

The response I've gotten so far has been a great big thud. Early Intervention (birth to three) responded by saying that it would take too long to get a PT evaluation (this was about six months before she aged out of the system) and that we should just add another session of OT so that the OT could work on gross motor skills (I guess she assumes that all therapists are interchangeable and that PT doesn't require additional training...quite an assumption to make). The pediatrician, who spends fifteen minutes with us per visit and most of it involves Hallie sitting on an exam table or my lap, said he saw nothing wrong with her gait when he watched her walk up and down the hall for fifteen seconds (I pointed out to no avail that walking up and down the hall is not one of Hallie's problems). The developmental pediatrician watched Hallie walk up and down the hall at her office for thirty seconds and came to the same conclusion. My request that both of them watch her on the stairs went unheeded.

Finally, after yesterday's pronouncement, I got referrals for neurology and orthopedics from Hallie's pediatrician who changed his tone a bit, saying that 'of course she's at risk for these problems'--meaning cerebral palsy, ultimately--but that he wouldn't want to just get one opinion on whether she has CP but that we needed a second, confirming opinion before he would buy it. He's got a bit of a problem with Hallie being labeled -- which also pisses me off. He was dead set against her having an aide or services in the classroom because that would make her seem different and essentially wanted us to enroll Hallie in any old school on her own to see how she'd do without help. He said that he would (reluctantly) provide us with a neurology referral if we insisted but that he didn't think that we needed to go down this route.

All of this seems to us to be tantamount to throwing Hallie to the wolves--something Sharon and I are not now and not ever willing to do. The kids at school don't care that Hallie has an aide and the therapists who visit spend time with all the kids so Hallie doesn't stand out. And at least this way she is not overlooked and learning stuff.

It's a good thing that Sharon and I always take medical advice with a grain of salt and realize that we know Hallie better than any one professional whom she sees knows her. And it's a good thing that Sharon and I are in relentless pursuit of the best possible care for our children.

But it makes me so angry that no one listens to us--we know what's going on with our kid and if we notice a problem, we're not making it up or looking for attention. The issues we've seen are very real and I just wish that the professionals would take us seriously and that everything wasn't such a fight.

So the upshot is that we will make appointments to see an orthopedist down at DuPont in Wilmington and a neurologist over at CHOP (both recommended by our pediatrician; while we don't think he's as proactive as he needs to be, his referrals have proven to be stellar). And we will do what we need to do to ensure that Hallie can keep up with her peers to the fullest extent possible. But the whole thing sucks tremendously and I hate it that the other shoe (or orthotic) has dropped yet again and that we are most likely cruising for yet another diagnosis in the near future.

On other, happier notes: stay tuned for an update about Hallie's excellent performance at her camp (preschool) end-of-session show; the positive news concerning Hallie's early attempts at potty training (courtesy of Hallie's excellent school aide); and how our new feeding approach is going. In the midst of all of our concerns about gross motor skills and CP it's essential to remember how far Hallie has come. Her progress is substantial, and as far as I'm concerned, the sky is the limit for her. She is talking A LOT more, making friends, not vomiting as much (157 days and counting...), and is the best little three year old two moms could possibly want.

Monday, August 17, 2009

Little Lea is on the move!

Little Lea, who is, after all, no longer so little (though I suspect that her nickname, "Baby Lea" shall always stick, even when she's a whole lot taller than I am), is on the move.

First the stats: at her six month check up, Lea weighed 15 lbs, 11 ounces, which is precisely what Hallie weighed at a year old (8 months adjusted). She was just over 25.5 inches tall, which places her firmly at the 42nd percentile for both height and weight (making her seem sort of square, I guess). Her head was just over the 50th percentile, which probably means that Hallie will be able to wear Lea's hats for a lot longer than Lea will (Hallie's head is at about the 10th percentile, though they stop measuring it at 3 years of age).

Speaking of Hallie, she somehow managed to weigh in at 32 lbs 13 ounces and was 38.25 inches tall, and consequently at about the 60th percentile for both weight and height. The weight seems a bit high (it was with a diaper on and prior to a bowel movement....sorry about the excess of information there!). But nevertheless, it's clear that Hallie has managed to start gaining weight again. We thank periactin, a bit of duocal and a relative lack of vomiting (we're now at 156 days and counting) for this.

But this post is not really about Hallie. It's about Lea's newfound mobility.

Lea has been commando crawling for a while now, but she's gotten a whole lot better at it. Instead of going backwards and in circles, she's now able to head in her direction of choice. And she's able to get where she wants to go pretty quickly.

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Oddly, perhaps, where Lea wants to go mostly is under the furniture. She has a particular thing for chair legs.

She also rather enjoys getting between pieces of furniture:

But what has brought particular joy to Lea's life has been her newfound capacity to get up on all fours and rock. She can only go backwards right now, but the kid is on the verge of really crawling. And this has her very, very happy and the adults in the household very, very frightened but.

But what frightens us even more is something that Lea did last night. While happily cavorting in her pack and play bassinet, Lea grabbed hold of the top bar and pulled to stand. I literally leapt off of the couch and across the room to grab her (Sharon momentarily--and I do mean for a single second--having averted her gaze from the little elf). Needless to say, we dismantled the bassinet portion of the pack and play within minutes of this event. From here on in (until she can find a way to climb out of it), Baby Lea will be using the pack and play as a play pen.

And in case you don't believe that the kid looks like an elf, take a peek at this smirk:

I Ride REAL Horsie!

After we returned home last weekend from our fun-filled Saturday, Hallie announced to Sharon, "I ride REAL Horsie!" Clearly she was distinguishing this experience at the Ocean City carousel from her experience, earlier that day, of riding Cocoa at Atlantic Riding Center for the Handicapped.

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We were finally able to get some decent shots of Hallie astride Cocoa, thanks to her cousin Megan, who volunteers at ARCH and who was around on a day when she was not needed as a sidewalker or leader. In this shot, Hallie is doing some occupational therapy moves on her pony. This involves reaching for objects and placing them onto cones so that she crosses midline and better integrates both sides of her body; adjusting her center of gravity and turning so that she improves core strength and balance; and using her voice to issue commands or communicate with her therapist.

In the next couple of shots, Hallie is riding backwards on Cocoa and having a blast.


Hallie especially enjoys trotting on Cocoa since she has a fondness for speed. Sadly, it's hard to get still shots of this but we'll try to take a video of Hallie trotting at some point in the future.

Anyway, while riding Cocoa seems like (and is) fun for Hallie, it's also pretty serious work that is paying off in very tangible ways. At the beginning of the summer, Hallie could not climb up and down stairs without resorting to crawling or creeping. Now she needs only a little bit of support from us when doing this, as long as there is a banister or railing upon which she can grasp. Just a couple of months ago, Hallie found it very tiring to climb up playground structures and tended to shy away from doing this too often; on Friday, when I took her and Lea to a local playground after preschool, Hallie climbed up a smaller slide on her own (I used to have to help her a lot when she wanted to do this); ascended the ladder to the large slide entirely on her own at least fifteen times; and even dared to climb up one of those corkscrew like structures to the big slide. She did not need my assistance at all and, for once, I felt like I might no longer have to hover over or near her for fear that she would not be able to accomplish a physical task or, worse yet, lose her footing and tumble to the ground.

Riding Cocoa has also increased her self-confidence and her vocal quality. She is issuing commands to him and interacting with her therapists using her 'big girl voice' more frequently and she is always proud of what she is accomplishing.

In a word, this was one of the best things we ever did for Hallie. Some people we've spoken with about this think that hippotherapy merely amounts to glorified riding lessons for a somewhat spoiled child. This couldn't be further from the truth. We are so grateful that the many volunteers who work at and donors who contribute to ARCH have made this possible.

Parents only pay a small part of the costs needed for the upkeep of ARCH's horses and stables. I think there are a total of four paid staff members who work there (Megan can probably correct me if I am wrong on this number). The cost of providing hippotherapy to one rider each month amounts to $270 dollars and parents only contribute $135 dollars of this fee. ARCH is committed to trying to keep these costs down because the people who run it know that parents of special needs children already spend a lot of money on the various therapies and treatments and devices that their children need. Insurance doesn't cover the cost of hippotherapy at ARCH and, charging parents full price would put it out of the reach of many.

That's part of why I am writing this post. ARCH is having a gala fundraising event at the end of September and, hopefully (if we can find childcare), Sharon and I will be attending. We'd love it if others in the area might consider coming along with us, but even if you can't (or you live way too far away), please consider supporting ARCH. Even small amounts of money will go a long way to helping kids like Hallie make the kind of strides she is making. Just click on this link and following the prompts to find out how you can help.

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Thursday, August 13, 2009

Brief Preschool Update

No photos tonight, alas. But I just wanted to update how things have been going now that Hallie is back in the classroom after her brief break of three days last week.

In a word, she's doing GREAT. Last week, during the break from school, there was a group orientation session with the two teachers who will be handling the youngest kids in the preschool and I got a chance to talk briefly with Ms. Kerry, one of Hallie's current teachers. I asked her how Hallie was doing and she had nothing but glowing things to report. From her perspective, Hallie is making a very easy transition to life at school and has really held her own. Hallie's favorite subject is music and she's a major contributor to the song and dance routines that they do (and this is, not surprisingly, the session during which Hallie is most vocal. She loves to sing and has even begun singing us the songs they teach her in class with which we are unfamiliar). She loves the instruments, too, and always races to the piano to play it during class. This is a good thing because they're going to start teaching the little ones basic piano skills this coming year. Hallie will really enjoy it, and if she continues to exhibit deep interest in music, we'll try to enroll her in a Suzuki piano or violin class once she turns four. Anyway, the only negative behavior, of sorts, that Hallie exhibits is a marked penchant to run back into the music room even when it is no longer her turn to participate in music.

Hallie has been great at following directions and is getting very good at lining up with the other kids and waiting quietly for her name to be called to go to the next activity. She needs very little redirection at school at this point in the game and is not only demonstrating an independence of spirit but also a very good capacity to follow the rules and executive motor planning.

After all the buildup we gave them over her eating issues (which remain considerable at home), they weren't sure what to expect, but Hallie has really taken to the new school routine. Indeed, on several occasions Hallie has raced to the table to sit down and eat even before her food is ready to be consumed (which has led to a couple of incidents where she tries to sample other kids' lunches. Who is this kid anyway? She won't try anything new at home). On Monday (the day that she returned to school), Hallie's OT and PCA let her grab her own bag and sit down. Hallie opened the zipper herself, opened all of the containers, asked for help unwrapping and inserting the straw into her juice box (after trying in vain to accomplish this task on her own), ate about half of her pizza slice and a few bites of everything else in the lunch box, and did all of this in the stipulated half hour. The OT and PCA just stood back and watched. And then the OT called me all excited and sent me a couple of snapshots that she took with her Blackberry).

And, on top of all of this, Hallie is communicating and interacting with her peers a whole lot more right now. Last weekend, she tested out the phrase "C'mon guys/mommy/mama/etc, let's do 'x'." She's been doing this at school lately too and this is helping her make friends more easily. When I dropped off Hallie at school on Monday, one of the little girls who likes Hallie a lot (according to the therapists and PCA who report such things to me) was just arriving with her mom. When Hallie saw her, she ran over to her to say 'hi' and the little girl turned to her mom and asked, "When is Hallie coming to my house to play?" And this little girl is not Hallie's only friend, either. Apparently Hallie has two close friends named Ella and Elinor. When Hallie arrived at school yesterday, Ella asked Hallie to sit down next to her during storytime. And today Hallie played in a little posse in the schoolyard with Ella, Elinor, and a boy named Connor for quite some time.

The teachers and therapists have all taken note. This came in handy this week when Hallie's excellent PCA had a medical emergency with her own daughter (who is 18 months old and has severe cardiac issues. The PCA was checking her into CHOP for testing in order to get at the bottom of what is going on with her daughter. The PCA's mom is flying in to help but she couldn't get to Philly until tomorrow). Anyway, Latasha gave me advance notice and I was able to rearrange Nadia's hours so that she could accompany Hallie to school part of the time yesterday and the day before. But Nadia had other obligations on Tuesday and had to leave early. The teachers were fine with this and it gave them the opportunity to see how Hallie fares on her own. Apparently she did great. So, today, the teachers told Nadia that it was fine to leave Hallie on her own. Judging from the fact that Hallie was off playing quite happily when I arrived today and did not even notice my presence in the room for a few moments, it seems that Hallie handled this quite brilliantly.

Anyway, we're really proud of Hallie and how well she's handling school. And we're proud of her new language skills too. Tonight, at dinner, Sharon asked Hallie to chew her food fast and Hallie responded, "I chew slowly!" We're not sure where she learned adverbs, but somehow she's picked up these (and so many other rulers of grammar) quite easily.

OK--that's all for now, except to note that we're now up to 153 days without vomit this year. And since last year our total number was 154, I think it's safe to say that we're going to set a new record this year!

Wednesday, August 5, 2009

The Preschool Post

Well, it's taken me long enough to get around to writing this thing, and, for once, it's not entirely because I have my hands full with two kids, household duties, medical appointment and therapy arrangement, and the like. This post is a long time in the making because I haven't quite known what to say about Hallie's first school experience.

When parents of typically-developing children write about sending their oldest young one off to his or her first day of school, the post is often full of some fear and anxiety (often shared equally by child and parent alike) but also a sense of wonderment and awe about a fabulous journey that is about to begin: the child is setting down the blocks that will lead to an increasing sense of autonomy and independence from caregivers that will ultimately lead to him or her carving out a personal path. It's the first of many school milestones and, after the initial tears and fears abate, all generally come to see it as something to be celebrated.

When you are parenting a special needs child, things are a bit different. While it is clear that preschool is a place where Hallie is free of us, the terms on which she is in preschool--with a one-on-one aide and visited by OT, Speech, a Special Instructor, and, theoretically (so far) PT--underscore that Hallie is nowhere near the point where she can function independently in the world. We hope that, some day, Hallie will be able to be autonomous--both in school and out of it---but we cannot really afford to dream about this at this point. We just need to get through this experience, which, for our kid, has its own special contours and rhythms.

First the prequel: the testing that confirms that your young one is globally delayed; the fights with the agencies to secure a placement that you believe appropriate and the services that your child needs; and then the mounting fear awaiting that very first day. You try to explain to your child what life has in store for her, in as simple terms as possible. But this is very hard to do when your child is largely non-verbal and it's never quite clear what she understands. We've never really left Hallie anywhere before--I went to gym class with her, and we've always had a nanny and Hallie's never been in daycare. We have no way to tell whether she has a notion of time, per se. She certainly knows the rhythm of the day: mommy gets up and showers and takes her cycle to work (Hallie can recount all of this if prodded), but telling her that she is going to be going to school for six hours some days and two hours other days and that mama would pick her up at the end was something so outside of her routine that we are fairly certain that she had no idea of what we were talking about. We could use Caillou--one of her favorite shows--as a reference point and began to tell her that she was going to go to playschool and would have teachers just like Ms. Martin (Caillou's teacher) but that was TV and what we were discussing was real life. Since Hallie has never really played with other children (she would get together occasionally with her cousins or neighbors or children of our friends for play dates but her communication with these children was minimal and verbal peers soon tire of her since she cannot interact with them effectively), the lure of spending all day with other children was, to say the least minimal.

Anyway, the big day arrived and, somehow, we got Hallie up and fed on time to depart for school at about 8:45am. We took the ubiquitous first-day pictures of our little girl with her new backpack (sadly, none involved a smile since Hallie does not consistently pose for pictures yet) and all of us--Sharon, Hallie, Lea, Nadia, and I--bundled into our car and headed off to preschool:

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Hallie mounted the stairs holding our hands and sat right down on the floor alongside the other children.

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We lugged in our tub of diapers/pull ups, wipes, changes of clothing, and special snacks in the event that she could not or would not eat the snacks provided by the school, gave them to the teachers and inquired about Hallie's aide. One of the stipulations of the typically-developing school that she attends is that Hallie be accompanied by a one-on-one Personal Care Assistant (PCA) who will help her with eating and toileting needs (we have fantasies about her being potty trained someday), and who will redirect her when she gets off focus and help facilitate her communication with the other children. (The PCA is not quite as trained or skilled as a TSS (Therapeutic Support Staff) person, for whom Hallie does not qualify since, at least right now, she's not on the Autism Spectrum.)

Anyway, we asked about her PCA and found out that no one had shown up at the school yet to take care of Hallie. Oops.

Fortunately, the school's director was willing to allow us to send Nadia to school with Hallie instead so that Hallie would not miss her very first day. I went home and spent the next couple of hours taking care of Lea while simultaneously hunting down anyone at the LEA who might be able to locate Hallie's PCA. My first four phone calls were none too successful. It was, after all, the day after July 4th weekend, and most of Elwyn's staff was still on vacation. Happily, a single call to the oversight agency in Harrisburg yielded success. I finally spoke to a real live person at Elwyn who said that she was going to track down the PCA. By this time it was 10:45am. Finally, some time around 11:30, the PCA showed up, claiming that she had been at the school at 9am but couldn't find any children or teachers. Now, it is true that the school meets on the grounds of a church (Old Swedes Church (Gloria Dei), the oldest church in Pennsylvania; it had been established in 1677) but the grounds are just not that big. Moreover, at around 9am there was a huge brigade of strollers and parents with preschoolers who were dropping off their kids at camp. And about an hour later, all the kids were in the play yard outside the school building engaged in water activities. It would have been hard to miss, unless, of course, the PCA was just plain and simple missing.

This was an omen of things to come.

Anyway, at around 11:30, the PCA shows up, and after an orientation of sorts with Nadia (I am pretty sure that the PCA did not read through the five page Hallie Care Manual that I produced), Nadia came home to report on how things were going, so far, that very first day. There were no tears, but that was to be expected, since Nadia had been with Hallie the entire time. Hallie loved music and loved playing in the water tables/wading pools, but lunch had been its usual bad event, and most of the OT's session with Hallie had been spent coaxing her to eat a few bites of cheese, a couple of chips, and some raisins. The PCA was OK--very young, and totally uninitiated when it came to dealing with special needs kids Hallie's age, but generally nice. However, as Nadia pointed out to me and as future direct interactions confirmed, the PCA was undereducated and semi-literate. I wasn't too worried about this, since, in the larger scheme of things, we're less worried about Hallie learning to read and count than we are about anything else (she is already pre-reading, knows her alphabet, shapes, colors, can count to 30 etc). We just needed someone nice, kind, able to help facilitate Hallie's socialization with peers (Hallie's weakest point, in our estimation), and responsible.

Responsible the PCA was not.

She showed up late on Wednesday and did not show up at all on Friday (after some more phone calls, it turns out that she didn't show up because she was watching her best friends children after the best friend failed to pick them up). The school called at 11am, since Hallie was having a meltdown and was in need of redirection at precisely the same moment when all the other kids needed help changing out of their bathing suits into dry clothing and lining up for their next activity and there was no one available to undertake the arduous process of getting lunch into Hallie. We needed to pick her up as soon as possible. And from here on in, if the aide was not on site, I was not to leave the premises and would have to take Hallie home with me if the PCA failed to show up by a half an hour into the preschool day.

Fortunately, Sharon had taken off the day since we were headed to New York right after preschool and was able to pick up Hallie and cart her off to do some errands while I watched Lea and packed our stuff. When Sharon got to school, Hallie was sitting apart from the other kids on a chair next to one of the teachers and eating one of the few foods (Krinkle Sticks) that she will reliably eat on her own. When she saw Sharon, she burst into tears.

This was not going so well.

I left Hallie in tears for the whole next two weeks (week two and three of school). Every single day, the PCA reported to me that Hallie loved her music session but that she would have nothing to do with the other children. The other kids--at least some of them--expressed interest in playing with Hallie but Hallie would just walk away when this happened. We were beginning to feel like we were losing grasp of our little girl, who was retreating more and more into her world of repetitively-played-with-in-a-routine-sort-of-way toys and her television land characters. We began to investigate social skills classes, made a follow-up appointment with the developmental pediatrician and requested a parents-only session with Hallie's Floortime/DIR psychologist to see if there was anything more or else we could do to integrate Hallie into the wider world.

The PCA swore up and down that she would be reliable from here on in, but showed up late two more times over the next two weeks. And then, a week ago Monday (Hallie's fourth week of preschool), she texted me at 7:15am informing me that she would not be there that day since she needed to get a tooth pulled. At 8:01am, I was on the phone with Hallie's Elwyn Service Coordinator (who had arrived a minute earlier) looking for a new PCA. It was the best move I could have made.

We sent Hallie off with Nadia that day while the agency hunted down a new PCA. By 10:00am they had located a new aide and by 11:30am, she was at the school. And, this time, I think we have a winner.

The new PCA has both professional and personal experience working with special needs kids and kids on the spectrum. Her 8 year old has autism and so she is well versed in sensory issues (she asked Nadia whether we do brushing--we don't--or joint compression and deep pressure--we do; she noticed Hallie's penchant for repetitive play and toy lining up and told me that she was going to work on disrupting this sort of activity and instead help Hallie move along from play area to play area so that she would experience different aspects of play and work with her on functional play skills). She is eager to facilitate Hallie's interaction with her peers. During Hallie's first three weeks, she had nothing to do with the other kids at school; in contrast, she has begun to play with, cheer on, and high five with the other kids this past week. She even walked up to one of the other children (a very popular boy, from what Hallie's teachers said) and gave him a great big hug when we arrived at school one afternoon last week.

Hallie is still most comfortable during music time (she calls out requests for animals during her favorite song, Old MacDonald Had a Farm, and dances and sings like a pro) and when her Special Instructor, Ms. Anne, is visiting) but, in general, she is a happier kid. She still has a hard time with story time (we are not sure whether she is not following the narrative because she doesn't understand it or whether her auditory processing and other sensory issues are getting in the way) and meal time is still challenging (though better than it was with the first PCA). She is still grappling with sitting on the big girl potty at school (we are sending in a potty ring for her so that she can feel comfortable trying to go to the potty and will take off a few days after school/camp ends for the summer and before the real preschool session begins in September to try and potty train Hallie). But all in all, things have been much better with the new PCA than with the old one. Not only does she show up before she needs to be there but she also sends notes home so that we can find out what Hallie did that day. That has allowed us to have more 'conversations' with Hallie at the dinner table concerning the events of the day. Sometimes Hallie really does tell us new stuff (that we can often check against these notes) and has even begun to name some of her friends at school.

Anyway, just as things really began to stabilize at school and Hallie began to seem happy about attending it (rather than a rote statement at night about "fun preschool" , she actually did seem to be having fun), Elwyn (the 3-5 EI agency) took off one of its random weeks. The way things work around here is that there are three calenders for special ed students: the first, for the highest functioning, doesn't provide for an extended school year at all and, rather, takes off from mid June through early September. The second, for the middle group, does provide summer services, but with breaks here and there. The third, for the least well functioning kids, provides services year round and with no days off. Hallie is in the middle group. We hope that she does not get so out of the routine by Monday as to force us to restart the adjustment period all over again. There are only two more weeks of camp/preschool until the late summer break and it would be a shame to have to do this.

In closing, here are a few pictures of Hallie at school during her initial two weeks. The nice thing about the school is that the teachers take pictures and post them to their website. We don't have any of Hallie at her very best, but, with the exception of the snack time shot, she doesn't seem miserable at school, either. I am hoping that over the course of the next year, Hallie does begin to make a set of real friends with whom she feels comfortable interacting. She is talking at home a lot more than she used to (we are hearing a lot of spontaneous sentences that are meaningful--the other night, she even said to Sharon, who was tickling her tummy "that tickles me!") and hopefully she will feel confident enough to use her voice at preschool and interact more with the other kids. And hopefully the kids--who seem like a particularly nice bunch--will realize what a funny, silly, and smart little girl Hallie is.

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