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.