Smiling Lea

Lea first began to smile last Saturday, on her six week birthday, but it took Sharon a few days to catch one on digital medium (what does one call it if there is no film?). Lea still only intermittently smiles for me, but she has this look for her mommy:





And speaking of images that make us smile, there's nothing greater than sisterly love. Here Hallie is high-fiving Lea, something which she is very fond of doing:

 

And here she's playing "This little Piggy with Lea." Lea is lucky that she is wearing footy pajamas because sometimes Hallie likes to squeeze little toes and fingers (which she did this morning while I had Lea on my lap and was feeding Hallie some breakfast):

 

Hallie is still being a model older sister; she loves to return binkies to Lea (but only after trying them out herself. Don't worry; we intercept them on their way over to Lea and trade them in for fresher, more sanitized models. Thank you, Ellen, for bringing us a nice supply of these!). Hallie also enjoys sharing toys with Lea. The other evening she tried to get Lea to try out her kazoo and handed her one of her plastic animal toys. On the rare occasion we place Lea in the pack and play (growing less rare now) and Lea begins to cry, Hallie rushes over to see what's the matter and potentially help out (at other points, Hallie does try to climb into the pack and play and Hallie spent a few minutes this morning trying out for size the Eddie Bauer bouncy chair that Lea now reclines in next to the bed. Needless to say our girl, who has grown another couple of inches overnight, is way too big for it).

Speaking of pack and plays: we are trying to put Lea down to play in them a bit more frequently. She loves looking at herself in the mirror and watching toys now (the favorite ones are the fish suspended from the swing that Gina and Jake sent us). And we even put her into the pack and play to rest for a bit on her own the other night. Maybe someday she will spend some time in the underused crib, even. Here Lea is showing off her advanced binky-holding skills (she's been holding her own bink off and on for at least a week now):

 

But it's not all smiles and contentment around here. Lea is very particular about how she is held most of the time. Her favorite position is belly to belly with binky propped in her mouth by adult shoulder while being rocked and swayed and bounced. You need to stand up for this one or else you get this face:

 

This is often followed by a full on crying jag. It's true that neither of us were prepared for the sounds that a full-term baby with good lungs could make. The worst cries, however, are reserved for the car. If the car is stopped at a light or the bink goes missing, we're in for it. Hallie often laughs at the racket and we're kind of hoping that this means she's mistaking the jaggy cries for laughter (something that we don't do. We keep our fingers crossed that there won't be traffic and that the lights will be timed well and that no one will ticket us for me undoing my seatbelt briefly to turn around and rock Lea's carseat a bit).

All in all, though, Lea is a great baby and her crying does not tend to be excessive. She does better when Sharon has no dairy than when Sharon does eat dairy (we're still not a hundred percent sure that Lea is cow milk intolerant but it's either the lack of cow milk or the addition of a probiotic to Sharon's diet that seems to have done the trick in terms of Lea's tummy aches). And she eats nicely (something to which her rapid growth attests. We don't know what she weighs right now, but we're betting on somewhere in the nine pound range. We'll find out for sure at the two month visit which happens in ten days. Hallie was 8 lbs. 14.5 ounces at seven weeks corrected so it'll be interesting to see how Lea measures up to her preemie big sister).

Testing, Testing, Testing

 

Just a few words about Hallie because goodness knows that it is taking me longer than I'd like to update the blog these days. Through a minor miracle (and some very effective string-pulling by one of Grammy's best friends who happens to work for the Developmental Peds at CHOP down in Atlantic County), we got Hallie in to see the Developmental folks last Tuesday morning for an assessment. The appointment was a long one (four hours, to be precise) and quite taxing for Hallie, but very thorough. A few residents watched her play and did the Bayley assessment again with her and then the pediatrician, who very much 'got' Hallie, administered another battery of tests. The good news is that, in terms of language, Hallie only tests six months delayed (actual) in all respects and is coming up at about 27 months. The bad news is that they cannot rule out ASD (autism) at this point. This is the gist of what the doctor had to say: when you first meet Hallie, she seems sweet and engaging but not terribly bright. Then you begin to spend time with her and watch what she does and find out that she knows quite a lot and that she is not only average in terms of intelligence but very, very bright. She's just not using what she knows terribly well in terms of communication and expression. So the doctor's assessment seems spot-on. Hallie can sight read several words (baby, bus, dog, and Hallie are clearly words she recognizes immediately), can count to at least twenty, knows the entire alphabet and has for a very long time, knows hundreds of words and signs, has memorized numerous books, songs, and tv scripts/plots of her favorite shows (and seems to know which episode contains particular letters of the day, songs, etc). She can follow two part directions pretty well. But her capacity to integrate and utilize this knowledge is limited. While Hallie knows tons of words, it's not always clear that she understands the abstract concepts behind them or how to sequence knowledge. For example, Hallie can identify all of the clothing items and food that one can point to; what she doesn't get is that the items are to be worn or eaten, respectively.

All of this means that Hallie will be is too easily dismissed as the sweet-but-shy-little-girl who sits off in the corner playing on her own. She would absolutely get lost in a school setting, in my opinion, as a result of this (unless that setting were a very small classroom with highly engaged teachers who could draw her out and help her focus on the areas where she has deficits. We are hoping that the preschool afternoon transitional program that we would like her to attend (as soon as she can get a shadow...which we hope comes through) will help her with some of this stuff. This particular school does a lot of work with sensory play and has art and music therapists on its teaching staff. It's in this realm, and not formal learning of shapes, numbers, colors, and letters--all of which Hallie has down--that Hallie needs work.

So the developmental folks recommended the following: an additional test called the ADOS (which involves a therapist observing Hallie at play) and perhaps a separate parent interview to rule out (or rule in) ASD. Regardless of what those tests show, she recommended that we get Hallie into Floortime DIR therapy now. Floortime is an approach pioneered by Dr. Stanley Greenspan (here is a link to one of his books, Engaging Autism which I ordered this week which provides a very helpful overview of how he sees ASD and his approach to therapies that can help with children on the spectrum). His discussion makes a ton of sense to me and seems relevant for a lot of our born-too-early kids who are predisposed to developing autism or the secondary characteristics associated with it. So I'm educating myself and, more importantly, have already set up a therapy session for Hallie for one of the (few) practitioners of this in Philly for next week. The second thing we've been advised to do is to get Hallie into some more occupational therapy, specifically aimed at helping her with some of her pretty acute sensory issues (even if Hallie is not on the spectrum, there is no question that she has Sensory Integration Disorder. Time to locate and dust off our copy of The Out of Sync Child.

Meanwhile, however, it does pay to note this: Hallie is using more and more language every day and she is doing so more consistently to express her wants. Her "I want please Mommy/Mama drink/cookie/up/out/etc, yeah!" phrase is being generalized and varied more (I heard "please Mama drink" today) and is sounding less rote. She is adding in new verbs ("I swing" "I slide") all the time now. And she even came out with a new two-word spontaneous utterance this week: after her bath, as the water was draining out of the tub, Hallie said: "bye-bye water". Hallie's articulation is also clearer. And, in terms of non-spectrumy behavior, there is no question that our little girl is engaged in the outside world and people around her: today we visited the Please Touch Museum with Jake (pics to follow at some point!) and Hallie wanted to show Jake something while we were at the water table ("River Experiences") section. She went off to look for him and when she found him, shouted "There he is!" and ran over and showed him her boat and flashed him a huge smile. She also is missing one or the other of us when we leave the room and now calls out "Mommy! Mommy! Mommy!" or "Mama! Mama! Mama!" depending upon who is missing (she has long experienced awful bouts of separation anxiety, but now she is putting words to her feelings). And she is clearly aware of and engaged with Lea (as the other post I just put up shows quite well).

 

While Hallie does do her fair share of lining up toys, that's not the only--or even primary--way in which she plays with her them. While she enjoys lining up blocks and sorting them by color and shape, she also grooves on building towers and knocking them down, for example. She might line up her Sesame Street figures on the couch, but she also shoves chips and cookies into Cookie Monster's mouth (something I am none too fond of, I must say, since it takes a few q tips to dig out the crumbs). And Hallie has been grooving on the new tea set we just gave her and will pour tea for herself and for us and clink cups and say her version of "cheers" and not just gnaw on the lid of the teapot (which I think poses a major choking hazard and is the primary reason this tea set is rated for the three and over set).

Hallie seems at her worst in terms of sensory stuff when she is tired and overloaded (and large numbers of kids in one space does provoke sensory overload, in my opinion. We saw this at the playground the other day and a bit at the Please Touch today). She doesn't tantrum--or hardly ever tantrums, anyway--but she does shut down and that's when we see her withdraw and focus on things like peeling crayons, chewing on her cuticles, or pulling her hair.

The same sorts of aberrant behaviors come out when Hallie is stressed, which is often while she is eating. So we've tried to make meals more enjoyable (and a bit briefer--now down to 45 minutes, and damn the calories!) Bacon, one food that Hallie loves goes a long way in helping here, too. (When given a choice between cheese and hot dogs, Hallie often chooses bacon and asks for it by name). Speaking of choices, Barbara, Hallie's most excellent feeding therapist, has come up with a plan to give Hallie more autonomy during meal time. Instead of asking her to take bites of what we want her to eat, we now give her options of what food (from a field of two, though Hallie has obviously added a third at times) and how much (one or two bites?). The TV is off during the eating of those bites (which prevents distraction) and is a reward for having eaten them well (though Hallie now sometimes just tries to swallow food too quickly to get back to the more enjoyable endeavor of watching Elmo's antics). This has gone relatively well this week, even with Hallie's second cold this month (she is in the middle of a non-stop snotfest right now, which really sucks, but she is getting better at wiping her own nose).

And since no Hallie update is complete without a tally, here we are: 45 days of vomit free life this year and one new food passion: the insides of Newman's Os or Oreo cookies. She likes to lick out the icing and return the half cookie to us, though I did spy her gnawing a bit on the chocolate yesterday. And she does seem to prefer the chocolate to other flavors: when I tried to give her a Ginger creme Newman the other day, she said "No! Black one!" to me. Let's hear it for food preferences and the language needed to express them!

Hallie's Eating Update

So it's been an adventurous six or so weeks around here. Taking care of Hallie full time (since I am on leave and we're still without child care, I've been the one who has been doing this most of the time) has been good for her eating in some interesting and significant ways. I've been a tad bit hesitant to post about this for fear of jinxing things (in the past, every time I mentioned that she was okay with something or another, this ended up being followed by a pretty bad bout of vomiting and a total reversal in trends). But we're now far enough into this process to note some advances publicly to the blogosphere.

OK--so here's what has been going on. Late this fall, we began to express concern to our pediatrician that Hallie's eating habits, which consisted largely of us feeding her purees and little in the way of table foods--just french fries and potato sticks, were becoming a problem. It's hard to conceive of sending your child to preschool, for example, when she cannot feed herself and when her entire diet consists of goat milk, goat cheese, goat yogurt, potatoes, pears, prunes, and apples. So we decided to try to allow her to graze a bit and eat some more age appropriate foods and a broader variety of them. Our pediatrician empowered our now former nanny to take charge of introducing Hallie to some new foods. We were given veto power over stuff (something that did cause some tensions, but in the end, we're the parents and that is our prerogative) but the nanny was going to do the food trials in case there was something we moms were doing that was provoking Hallie to vomit or refuse food.

Not much happened in the way of progress. We discovered that Hallie really doesn't do well with berries (they appear to disagree with her tummy and lead to increased reflux) and that she is okay with pureed sweet potatoes and carrots (at least in rotation in her diet) but not much else. Our old nanny was feeding Hallie stage 2 and 3 baby foods and not much else. The rationale here was that this would rule out 'mechanical' (as in, she choked on something or had a problem with texture) vomiting, but did not advance her eating skills to anything beginning to approach age appropriate. We wrangled a bit with the nanny about macrobiotic diets and the introduction of green superfoods (she implied that this was the answer to Hallie's problems; we thought that this wouldn't work too well for a kid whose only protein source was goat derived and who could not tolerate soy well). But we got nowhere fast in a hurry.

Early this winter, we met our super fabulous feeding therapist, Barbara. Barbara watched Hallie eat hard (mozzarella) goat cheese and apple and pear slices and quickly ascertained that, while Hallie is a very slow eater, there was nothing wrong with her chewing or swallowing. The kid lateralizes very well and knows how to move food around in her mouth with her tongue and while her swallow is a 'hard' one, she manages to do it quite well. She just needs some extra time with things and Barbara hoped that, with practice, things would improve. This was good to hear because it gave us the go-ahead to play around with food textures.

At about the same time, largely because of our little three-year-old neighbor, Adam, Hallie began to take increased interest in new foods. At Christmas dinner at Adam's house (also residence to his mom and dad, Barbara and Chris, and older brothers Benjamin and Conor), Hallie expressed fascination with Wheat Thins (as she pointed out, they are 'squares' -- which she pronounces 'fares') and ate a few happily and with no discernible negative impact on her system. That was when we began to suspect that she was okay with wheat and that the patch test done by her allergist last year was either a false positive (it was borderline, but the allergist had us pull wheat) or that she had outgrown her sensitivity to wheat. Either way, getting wheat back into her diet was HUGE. It opens up a whole array of erstwhile forbidden foods.

Here Hallie is mostly playing with a piece of pita bread (which she calls "pizza"):

 

It turns out that, for whatever reason, Hallie is not a huge fan of baked goods. This is very sad. There is nothing better than fresh-baked bread in my book. But she has at least tried mouse-like bites of toast, has gnawed on a bagel, has eaten a few animal crackers here and there (I highly recommend the vanilla flavor by Barbara's Bakery...they are a major step above your traditional animal cracker), and has even eaten a few Newman's Oreos (she likes the cream but doesn't seem fond of the chocolate cookie. I'll try to get a hold of the vanilla version if they make them to see if those are more to her taste). But the key here is that she is not sensitive to wheat. And this meant that I was free to try fish sticks.

Fish sticks, perhaps because they are fried (I bake them in canola oil) and salty (Hallie loves salt and in this way really takes after Sharon) are more to Hallie's taste. While she's no championship level fish stick eater, she has managed to eat one or two of these at dinner (we buy the Mrs. Paul's version since they don't contain egg or dairy; a lot of other brands have one or the other listed on their ingredient panels). She prefers her french fries, so we have to bribe her with fries to finish her fish sticks, but the point remains that she earned herself another age appropriate finger food.

After we determined that she was not having any negative response to fish sticks, I decided to try salmon. This was a big hit (I drizzled baked salmon with olive oil and salt) and she managed to eat about a half ounce or so at a sitting. Can you say Omega 3 fatty acids? Next up was smoked trout---a major winner where Hallie was concerned. I am guessing the salty smoky flavor really appealed to her on this one. Smoked salmon, for various reasons, was not so much of a hit. Perhaps the chewy texture got in the way for her. But no big deal--we have fish. Which also means we had a second major protein.

Next up was chicken. I found a brand of chicken nuggets that were both safe (no egg, soy, or dairy) and kid-friendly (reconstituted nuggets as opposed to chunks of chicken breast). Hallie managed to eat a whole nugget once but was none too impressed with these (perhaps not salty enough?) I tried to get her to dip the nugget in honey mustard but she was having nothing of this (she is not a big fan of dipping and doesn't like to mix things with things--I think this is all behavioral and perhaps even typical toddler shenanigans). But she did not have an adverse reaction to the chicken, either. Which allowed me to try something else:

Chicken hot dogs. Hallie loves the idea of hot dogs. After all, the Pigeon of Mo Willems fame, finds one and thinks that they are "Yummy, yummy, yummy." While she liked the taste of beef hotdogs when we tried these way back when, they clearly did not agree with her system. But now that we had chicken, I thought we could give this one another whirl. And so I bought us some Empire Kosher Chicken Hot Dogs (because they are kosher, there is no chance in the world that there is cross contamination with milk products). And they were a winner. Or should I say weiner?



Anyway, she loves these and can get through about a third to half a hot dog, cut up in chunks, in one sitting. This may not sound like a lot to the average person, or even average toddler, but for us, this is HUGE.

Just to make sure I was counterbalancing our foray into kashrut (Jewish dietary laws) with something a bit more treyf (non kosher, in Yiddish), I decided we'd try bacon next.



And this, too, was a huge hit. Indeed, bacon may even be Hallie's favorite food right now (perhaps even surpassing french fries and Lays potato chips). She can eat about a slice at one sitting (again, chunked up and stripped of those fatty bits that never quite cook up to crispiness).

So we have a full line up of protein right now: goat milk, goat cheese, goat yogurt, fish of various sorts, chicken hot dogs, and bacon. We can broaden things from here as Hallie's tastes mature (perhaps). Chicken lunch meat was okay but she wasn't thrilled with it. Ham might be an easier sell. I bet she'd like salami or bologna but I need to find an all-pork brand (or a safe chicken brand; I'm fairly certain Empire makes a kosher chicken bologna).

Bread and pasta not being well-loved items, but Hallie will eat small handfuls of honey-sweetened puffed wheat. And perhaps we'll try oats again, which will open up an array of cereals.

We're not giving up on bread, though. I did find a 100% canola oil margarine and slathered that on a half a toasted bagel and Hallie did seem to like it a bit:

 

Veggies are still an issue. She does small amounts of sweet potato puree but is not all that interested in the sweet potato fries I made her. I might try a commercial brand of these if I can find ones that are not coated in rice flour (we're trying to do one thing at a time to make sure that we know what is going on with Hallie digestively). Hallie does, however, like asparagus. She stole one off of Sharon's plate and ate most of it. Subsequently, she's eaten a few more but tends to rip them into tiny strips (they are very fun to peel and appeal to Hallie, who is a major peeler of crayons). Hallie also seems to like romaine lettuce (but it, too, is more of a plaything than a food to her). I'm not sure what we'll try next in terms of veggies. Maybe beets are a good candidate. Or fried eggplant or fried zucchini.

 

Still, all in all, we've tripled the variety of food Hallie is eating and we've now gone over to a system where she eats table foods (we have to dole out a few chunks at a time or she gets overwhelmed) for the first half of each meal and purees for the second half. Meals are still long, drawn-out processes that take an hour to complete and we need to coax, prod, beg, and bribe Hallie to eat and drink most things. But she's doing it and we're mostly making progress. We have had some regression and some behavioral outbursts; trust me, the only thing more infuriating than Hallie throwing all of her food and banging on the tray of her high chair while declaiming "no throwing" is when she repeatedly spits out every bite that she takes and self-induces bouts of vomiting. But we're trying behavioral techniques (in other words, we're ignoring this behavior) when it happens and most meals this week have been relatively smooth going. Hopefully at some point she'll decide that she likes something well enough to eat it on her own and without positive reinforcement, but we try to remember, when we get dejected about how much time we spend feeding Hallie and how much effort we still have to put into this endeavor, that we are worlds away from where we were even six to eight weeks ago.

We are somewhat concerned about Hallie's weight right now, but, again, we need to remind ourselves that she had a bit of weight to spare and that our goal is to get her eating more and better in the long run and that we might have to tolerate a weight plateau or even loss in order to achieve this goal.

Meanwhile, we've also managed to keep the vomiting in check. January was a stellar month -- she had 26 vomit free days. February was not quite as good -- only 7 days without spewing -- but we did have a lot going on including a cold, a suspected ear infection and a major surgery. March has been pretty good so far, with 8 out of 12 completed days being vomit free. So, compared to where we were this time last year, we're doing great with 41 days (out of 71) of vomit-free existence under our belts; we were at 20 on March 13, 2008, so we've more than doubled our record!

Anyway, so that's where we are on the eating front. If anyone has any suggestions about foods we might try, please let us know!

Re-Name That Blog!

Obviously, with the addition of Lea to our family, we need to rethink our blog title (don't worry...the URL will remain the same). The two of us are lacking in creative impulses right now (and while we do entertain seriously Hallie's suggestion that we call the blog 'Elmo', 'Barney,' or 'Zaboo', we think that might be a bit too confusing to readers.

So it's up to you. Just leave a comment if you have a clever blog title in mind and we'll announce the winning title at the end of the month.

Meanwhile, a few more recent pictures to inspire your creative juices.

Lea and her binky:


Lea in her swing:

 

Lea looking so much bigger to us:

 

 

Hallie loving on Lea:

 

A Day at the Zoo

While everyone waits for my long overdue preschool post (still in process), here are some pictures of our Sunday at the zoo. We met up with our friends Sheila and Alex and saw a few animals, but mostly just hung out (we got there late, which is par for the course of trying to get out of the house with one toddler who doesn't like to eat breakfast, one newborn who doesn't like her car seat, and one grammy who likes both the toddler and the newborn, and this on the day after we sprung ahead our clocks.

Lea was not terribly impressed with the zoo but did not mind the stroller too much (though Hallie took it over part way through the outing and Sharon ended up carrying Lea in the sling. Idiots that we are, we could not figure out how to install the Phil & Ted's second seat in the "captain's seat" position on the fly. I figured it out just fine once we were home and the pressure was off).

Anyway, we had a great time looking at leaping lemurs, eating lunch (Hallie ate about a slice of bacon---another new food---and some fries and even deigned to dip a few in ketchup when she watched Alex doing that with hers. Of course, she would not eat the dipped fries, but still).

Here's a lovely shot of Alex and Hallie:

 

And here's one of Hallie brushing the goats (not sure if they were nannies or billies, but we love them all around here!)

 

OK--back to editing posts begun but never completed!

Transition Plans, Preschools, Advocacy..Oh My!

The kids are relatively quiet and peaceful and I have a rare daytime moment, so here's the third part of the update that I promised.

In addition to everything else we've been juggling (and contrary to accepted math, 2 kids DO outnumber 2 parents), we've been trying to negotiate the preschool transition for Hallie. What this amounts to, at this stage, is figuring out the extent of the misinformation and outright lies the representative of the agency handling the Philadelphia County Intermediate Unit has imparted to us; what we are entitled to receive by law; and how to do the best thing for our kiddo.

Here's a bullet point list of the lies we've heard so far:

1. You are not allowed to see the preschools/Head Start programs before your daughter is placed in them. This lie was oft repeated to us by the now-replaced Service Coordinator, even when we called her on this. Her supervisor's response: well, parents don't usually want to see the schools so she probably never dealt with a situation like this before. WTF!! This is a service coordinator who ostensibly has in excess of 20 years of experience. I do not for one minute believe that no parent ever asked to see a school before, particularly in the area in which we live (and which she apparently services), which is populated by many well-educated and professional people (not in any way is this a prerequisite for parents who, by nature, I think, want the best and safest educational system for their kids).

2. You are on your own where it comes to medication and dealing with your child's chronic medical conditions. The Intermediate Unit (3-5) only provides for the child's educational needs and goals. Not true at all! There is something out there called Chapter 15 and the school system must include a Section 504 plan for dealing with a child's medical needs that get in the way of education. Here is a link to a very good publication on the issue. Moreover, the education system must do this at no cost to the parent. They cannot even just tell us to contact our insurance or Medical Assistance to get this done. In fact, it needs to be written into the IEP (Individualized Education Plan) so that, if the child loses insurance or Medical Assistance, it needs to be provided at the cost to the school system, and not the parents. So telling us that we needed to find someone to run meds over to wherever Hallie is placed and/or not educate her at times she needs meds (what would this be? when she's sleeping? Seriously. She takes prilosec and zyrtec an hour before breakfast and reglan a half hour later; she takes reglan and axid before lunch; she takes prilosec at about four to five pm. She gets albuterol when she's sick as frequently as every four hours and as a rescue med if she has an asthmatic incident).

Even more interesting is that I just had a conversation with one of the advocacy folks with whom I've been in touch (It's now been quite a few days after beginning this post...I'm finally getting back to it on March 10th. Life really is taking a toll on my blogging!). The very nice parent advocate informed me that the agency handling IU here in Philly does, with prodding, provide 'shadows' and that the law requires them to do so since, by law, the IDE MUST address each child's unique needs in a way that provides him or her with fair and accessible and equal educational opportunities that will allow him or her to contribute productively to society by the end of the educational process. Makes sense to me, and no big surprise that the folks at the IU coordinating agency lied about this one, too. So now there's something else for us to push for...

3. We are not responsible for testing her for PDD-NOS or any other spectrum disorder. We only have a part time psychologist and s/he is very busy. Lie. Total lie. If we request this, psychological assessment must, by law, be done. Period. They cannot even demand a doctor's note for this.

4. Hallie turns 3 in June. Head Starts begin in September. We'll make up her services then since she's no longer qualified for the Birth to Three program once she turns 3. Lie. Not that they won't try to weasel their way out of providing extended services.

Anyway, you can see why I have about zero level of confidence in the agency that handles (mishandles?) Intermediate Unit services in Philly. So, first we got reassigned to a different service person. Of course, the service person aims at providing no services. Apparently, they handle transition, place the kid in a program convenient to them (and not necessarily best for the kid) and then the parent needs to live with whatever the placement is, or go to dispute resolution. Not a good system.

The sum total of the work this new person has done for us is: 1. send us a xerox of outdated numbers to call for different school/head start programs so that we can visit them on our own (no one has called us back yet from the several I called last week. Maybe I'll just show up). 2. get us evaluation dates for the testing and the psychological testing (which miraculously became available to us when I quoted the law to her). I expect that, unless we mediate, I won't actually meet this person.

Anyway, needless to say, this has been an enormously frustrating experience already, and Hallie has yet to turn three. And it's eaten up hours and hours of our time. I've been on the phone with one or another advocacy group numerous times; have spent considerable energy on perusing the laws concerning Special Education and disability rights here in Pennsylvania; and have been calling around to different preschools. The Head Start brochure listing the name of the administrator who handles special needs kids at various centers has proven utterly useless and no one has called us back from the central coordinating office (if there is even one; all we have are numbers). We did make appointments to tour three preschools on our own: the first is a year-round reverse inclusion program that is where kids with more serious IEPs get assigned. The second is a daycare/preschool facility that is mostly for government workers that is located a block from Sharon's office that takes a couple of Head Start or Special Needs kids each year; and the third is a private preschool that we would end up paying for out of pocket.

The first seemed utterly inappropriate to us in terms as a place for Hallie. First, in terms of security--there was none of which to speak. We rang the bell, and instead of asking us to identify ourselves via intercom, the person in the office just buzzed us right in. There was a sign that read "Please sign in at Main Office" but no safeguards (like a security person, even) to ensure that one did so. We could have wandered around for a while before being noticed.

Second, all of the therapies are done in groups and in the classroom. When I inquired what the protocol was when a speech therapist was in a classroom with one student who was apraxic, another who had feeding issues, a third who stuttered and a fourth who dropped endings, I was told that they would all be handled at the same time as a group. This was not an answer that made me confident that Hallie would receive the services that would actually work for her. Then we asked about feeding support. The teacher told us that the teacher and her aide (the ratio is 1 to 10, with only the teacher having any educational degree that would suggest that they should be running a classroom) would provide some hand over hand meal support. Just then a little boy ran up and said "Miss B., I'm hungry!" It was about 11:15 at that point and Miss B. asked him if he had eaten breakfast (which is provided at the school). He said "no" and she told him to wait until lunch. OK--so I have several problems with this: if the teachers are providing support, would they not know that he had not eaten? Where were they when he was not eating his food? Also, what would one do with a child like Hallie who simply would not eat on her own and who doesn't know how to say she is hungry, if she even feels hunger (which we are not sure that she does. Certainly the several days in a row this past week when her total intake could not have exceeded 500 to 600 calories do not lead me to believe that she feels hunger. Since there is no pull out therapy, one could reasonably expect our kid to not eat breakfast and lunch on the days that she is in preschool were we to accept this as a placement (which we will not).

Third, the entire setup of the place transmitted a sense of barely controlled chaos. There was no productive learning going on in any formal sense of the word in any of the eight classrooms that we visited. We were assured that there was a formal group time when children first arrive, but given that the schedule is staggered (to allow children to go out to play at different points during the day), it is odd that in not a single instance did we see story time, an art session, music, etc. Instead, the kids were in various clumps scattered throughout the rooms, some in therapy in groups and others hovered around blocks or computers or the like. The teachers were fielding questions from kids and not participating in play with them. And in the case of the kids in the playground, we witnessed three or four young boys pummeling another in the corner of the yard while the teacher (the only one who was seemingly supervising this play) was standing half a yard away staring into space. We have no idea if the pummeling was playful wrestling or playground bullying but, as a parent, I'd want a teacher to suss out that situation and not just fail to notice it.

So it was good to visit this place since it's important to rule things out and move on. And so we did. The second school was the absolute inverse of the first. Security was fabulous (it is, after all, located in a Federal Building) and the teachers were not only clearly engaged with the kids but actively involved in teaching them stuff. Order reigned supreme at every juncture: kids coming in from outdoor play wash their hands (and stand in line to do so); children don smocks and sit at little tables and await their lunch (and I bet you they don't tolerate food throwing and other skills at which Hallie now excels). Meals are all provided and children must eat the meal of the day, with reasonable substitutions made for medical conditions (like allergies). There is a lending library of books and all of the toys are new and clean. So what's the problem with this place? First, Hallie really would need an aide since eating and toileting would be an issue here. The program is a five day a week, six hour a day program and she could not handle this on her own. And second, getting in. The waiting list can last about two years for typically developing kids whose parents don't work for the US government. I have no idea how long it is for special needs kids and whether there is a way in that circumvents this wait. We're going to try to find out, though, since this would be a great program for her when she is four. She needs structure and actually thrives on it once she is taught what to do and how to do it. (For example, her purple dinosaur teacher, Barney, has taught her to clean up her blocks, which she now does fairly regularly).

Our third visit last week was to a local arts- and music-oriented preschool program that just introduced a transitional, afternoon program for kids who are beginning the move to the preschool level. The program places an emphasis on social communication, which is one area where Hallie really needs work. And the school has an explicit mission statement of inclusiveness of children with special needs. The school is quite close by (about seven blocks away), which is an added bonus. The director knows A LOT about special needs kids and about preschool education in general, which gives us a great deal of confidence. She did, however, insist that Hallie have a one-on-one shadow to assist her in the preschool context, and we agree that this would be a good thing. Hallie does not have the easiest time with transitions (she has awful, meltdown-level, sometimes vomit inducing separation anxiety fits) and she lacks the capacity to comfort herself. She also cannot really take care of her own needs, and often is not even able to express these needs. When she attempts speech, it's often quite hard to understand her (she may be about 30-50% intelligible to others and about 50-70% to us) and she gets very frustrated when we cannot figure out what she is saying. So, an aide who can help facilitate transitions, communication, self care (like feeding and helping toilet train, should we ever get to that stage in preschool) and especially someone who knows ASL would be great. Now we just have to get one approved by insurance or Elwyn and we're set to go. They'll take Hallie into the program whenever this happens. We hope it's when and not if.

So where do we stand now? We will continue to explore the Head Start/Learning Tree programs that are well-rated and nearby (we're not particularly interested in bussing Hallie across Philadelphia, but this is a moot point because only the reverse inclusion and all special needs oriented programs provide transportation). But in the meantime we are going to make sure that we have a parent advocate in place at the IEP and that they review anything that Elwyn produces, paperwork wise to make sure that Elwyn is not in violation of the law. If we need to hire an attorney or go to due process or mediation, we will. And we'll make sure that we know what Hallie's rights are and that they are respected. By law, the county must provide our daughter with a free and appropriate public education that meets her unique special needs and if they cannot do this, they will have to make sure that they pay for private programs/personnel that can accomplish these goals.