IEP is Done!

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

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

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

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

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

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

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

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

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

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

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

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

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

The Things Hallie Can Do

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

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

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

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

From My Videos

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



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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Happy Mothers' Day!

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


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

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

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