If you are fighting the system to get your child services, if your child is being written off as unworthy, and if you need some inspiration about how to channel your anger into something constructive, you need to read this post....
Thank you, Rachel and Aaron Coleman, for fighting for your daughters with every ounce of strength that you had (and probably then some) and then channeling your energy into providing a resource to all of us out there through Signing Time. You guys gave Hallie the capacity to use language before she could ever vocalize and helped pave the way for us to communicate with her.
How Old is Hallie?
How Old is Lea?
Showing posts with label IEP. Show all posts
Showing posts with label IEP. Show all posts
Friday, June 18, 2010
Wednesday, May 19, 2010
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.
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.
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:
Hallie mounted the stairs holding our hands and sat right down on the floor alongside the other children.
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.
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:
Hallie mounted the stairs holding our hands and sat right down on the floor alongside the other children.
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.
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.
Thursday, May 28, 2009
Milestones, Measurements, Meanderings
Once more my post is going to end up being a great big grab-bag of assorted goodies. I guess I have to face the facts here: there is no way in the world that I can find the time to do more than one post every week (if I'm that lucky).
As usual, it's been pretty busy around these here parts. Our lead up to the long Memorial Day weekend was punctuated by Lea reaching a really significant milestone: rolling over from back to front while on an absolutely flat surface. She'd been working on this skill for days and had figured out that grabbing hold of the toys on her gym mat would provide her with some of the leverage that she needed for the first big flip.
Needless to say, neither I nor Sharon (nor anyone else, for that matter) witnessed the event, which happened late on Thursday night, May 21. I was off in the kitchen grabbing something to drink and when I came back into the living room, this is what I saw:
Here's a close-up:
Of course, I flipped Lea right back over onto her back and watched how, within seconds, she was back on her tummy.
What's more, Lea has amazingly good head control; while this is not evident at all in the shots above, you can see what I mean here:
So, ever since Thursday, Lea spends most of her waking hours (which decidedly are NOT during the day but in the evening and at night) practicing her moves. She has mastered rocking from her back to her side and then onto her back once more but she has not yet tried to go from belly to back. And it often seems that she surprises herself when she lands on her belly and seems to wonder, 'What the heck am I doing here? Why did I do this?' It's all pretty funny.
Of course, even though parents should not compare their kids, Sharon and I have been struck by the fact that we have not had to teach Lea how to perform these moves; she just does them so naturally and effortlessly. And we cannot help but think back on when Hallie was little and how we had to teach her how to position her body so that she could flip over. It took months of practice before Hallie mastered this. Even though Hallie rolled over with some coaching at around three months corrected, she did not really begin rolling until she was well into her sixth corrected month and this with much training. Her next developmental milestones (sitting independently, scoot-crawling, pulling to stand, and even cruising) followed very quickly thereafter, but mastering how her body worked was a major effort for Hallie and a challenge for those of us who helped her along the way (namely, me, Sharon, her special instructor and her occupational therapist). For Lea, these are natural moves and we're getting a glimpse of what parenting your typical baby looks like.
The same is true of language development. Lea is cooing, shrieking, making cute cat-noises, and vocalizing lots of sing-song vowels right now, and often doing this by mimicking us. Sometimes it's not quite clear whether we're doing the mimicking or she is, but what it amounts to is a very rudimentary form of conversation. She has also begun to blow lots of raspberries. We experienced none of this with Hallie, who, between the vocal cord paralysis and her language delay/disorder, was a very quiet baby. Hallie is finally beginning to do quite a bit of talking at home, or at least when she is feeling comfortable, but she's still quieter than your average kid, especially in public. Between shyness, a lack of confidence about speaking (since we really do think she understands that this is a major issue for her, and for us), and her expressive language limitations, speaking -- and especially conversing -- remain a real struggle for her. She will talk now, and she even is using sentences consistently. Most of these are requests ("circle icey please!") or descriptions ("I sign 'tree'") but at least her language is coming in. But skill acquisition and refinement remain so hard for Hallie and something upon which we have to work, work, work. We suspect that this will be far different for Lea.
Speaking of Hallie and skill-building, we had our IEP last week. The meeting itself went more smoothly than I thought it would and the team that the Local Educational Agency (Elwyn) assembled seems pretty good. My preparation of IEP goals, with the assistance of Hallie's speech and occupational therapists, did provide some good guidance and, with the exception of several sticking points, the IEP itself is fine.
Nonetheless, these are important sticking points. Some of the goals specified, particularly by the Special Instructor, seem to be set too low. For instance, one of the goals is that Hallie will use social greetings with adults without prompting. Hallie is basically doing this already and has little problem saying "Hi so-and-so" when she sees so-and-so. What she cannot do is take the conversation to a meaningful level beyond that. That should be the goal upon which to work, and not social greeting.
Likewise, Hallie is already following one-part commands with little guidance (as long as you get her attention) and this should not be a goal (as it is now). Rather, she has more problems with two-part-related and unrelated commands. She can do the former fairly well and the latter not at all. These should be our goals.
Not all of the IEP goals were low-balled, but we do need to correct the ones that were. And we need to have her re-evaluated for Physical Therapy sooner than four months from her 3rd birthday. This is a major weakness for Hallie, and unfortunately she has had no PT service at all thus far. We are unsure that twice monthly PT visits are sufficient and need to know whether it's essential to step these up in terms of frequency sooner than September or October.
The real sticking point, though, is procedural. The LEA never explored placing Hallie into a publicly-funded regular preschool situation and came into the IEP meeting with a sole placement in mind: a reverse mainstream school. The IDEA stipulates that the LEA is required to explore a continuum of placements beginning with schools for typically developing children and only moving down to programs that are more restrictive if it's impossible to place her in a program that is less restrictive that is appropriate for her educational needs, even if she requires supports in that program. That never happened. We did try to get Hallie into a Head Start program down the block that seems very good (has dedicated classes in movement, music, and art each day that are taught by specialists in these fields, a very small classroom for beginning students, etc) but the program is full and, while Hallie is number one on the waiting list by virtue of her disabilities, it's not likely that she'll get into that program. For various reasons, we do not want Hallie in the program that is the more restricted environment, and we did a lot of legwork to find her a placement in a private program that is geared toured typical children but inclusive (and very supportive) of students with IEPs, but given that the LEA fell short of fulfilling its legal mandate, our goal is to see if we can get it to defray the cost of the private program. I'm not sure how far we want to go in pursuing this but it's worth a shot, at least. Hopefully we'll be able to resolve this all relatively amicably before Hallie needs to start school, but the special education/IEP saga continues for now.
One last update before I call it a night: we took both kids in to see the pediatrician today and Lea weighs 12 lbs, 9 ounces and is 24.5 inches tall. She's at around the 40th percentile for height and about the 25th for weight. Thus, she's not much bigger than Hallie was at this age (at just over four months, Hallie weighed 12 lbs. 9 ounces). That sort of surprised me.
Hallie weighs an even 31 lbs (but this is with a dry diaper on) and is 37.5 inches tall. She's just around the 60th percentile for both height and weight. It's nice that she's caught up in something!
We were a bit disenchanted with the ped today, and not only because the office visit took two hours and both kids were distraught by the end of it (and Hallie ended up missing her nap as a result of all of this). He seemed dismissive of our concerns about Hallie's development and suggested only that we should throw her into a typical preschool with no supports at all to see how she does. He doesn't seem to get Hallie (in contrast to the Developmental Ped, who totally got her). As Nadia pointed out, Hallie shuts down when overwhelmed and she finds little more overwhelming than a big room (or schoolyard) full of kids running around. Shutting down won't help her language, or any of her other skills, in the least. She's not going to just start having conversations because other kids are having them and she's not just going to start eating three square meals, two snacks, and two cups of milk because that's what other kids do. As our Developmental Ped noted (and as the story about rolling over with which I began all of this suggested), Hallie needs to be taught skills, she needs to rehearse skills, and she needs to trust her environment in order to practice her skills. A lot of good things are happening right now in terms of her development because her Floortime DIR therapy (and our use of it and the Hanen method at home) are really empowering her. She's surrounded by people sensitive to her interests who are helping her close conversational (and gestural) communicative interactions. We are hoping that her Special Instructor, Speech Therapist, and sensitive preschool teachers who are aware of her delays and issues will build off of these interests in assisting her negotiate the communicative challenges she will face in preschool. These supports are not gratuitous and won't label her so much as help her catch up (at least that's the plan).
Our ped is worried that these things will stigmatize her. He is similarly worried that not eating ice cream will be a source of stigma and that getting her checked out by a Ped Neurologist to see whether she has CP could stigmatize her. This is something that I am increasingly concerned about since Hallie's gait and run are very awkward and unnatural looking; Hallie falls a lot and cannot negotiate stairs even with the support of a banister and sometimes even with support of a banister and a person holding her hands. And I cannot begin to count the number of times I've heard the phrase "well, she has low tone throughout her entire body" in the past month. When things quiet down around here, we probably will ask for this referral (even if he does not like giving it to us) because, if she does have mild CP, there are perhaps things we can do to help her that we are not already doing. Our plan as parents is to provide Hallie with all the support that we possibly can to help her be the best possible Hallie she can be. That was what we signed on for when we made the momentous decision to resuscitate at 23 weeks, knowing the risks she faced both in the NICU and down the road, and anything short of doing everything within our potential that we possibly can for her simply feels like dropping the ball on her. And that's not something either of us ever want to do (unless, of course, it involves burying her in a ball pit to satisfy sensory cravings, but that's another matter altogether).
But before I end this post, a few more cute pictures are in order:
Hallie playing "This Little Piggy" with Lea's toes. She said the whole thing, and then went on to repeat the process on one of her dolls.
Hallie's been doing much more in the way of real pretend play these days. This is an emerging skill and still quite fragmented, as our Floortime/DIR therapist puts it. But she's moved beyond the basic social emotional levels that are the first stages described by Stanley Greenspan (Floortime guru) and onto more sophisticated stuff. Here Elmo is having a conversation on the telephone:
And here Hallie has put her dolls to sleep (borrowing a few burp cloths from her sister in the process):
And, speaking of burp cloths, I did get a shot of Lea loving on one of them:
Not to be outdone in the sensory department, here's Hallie after she buried herself in the couch cushions:
And, finally, not a picture, but an important statistic: we're up to 99 days without vomit this year and this is amazing to us. Last year we were closing in on Labor Day by the time we reached this goal; this year, we're not even quite at June. Woo hoo!
As usual, it's been pretty busy around these here parts. Our lead up to the long Memorial Day weekend was punctuated by Lea reaching a really significant milestone: rolling over from back to front while on an absolutely flat surface. She'd been working on this skill for days and had figured out that grabbing hold of the toys on her gym mat would provide her with some of the leverage that she needed for the first big flip.
Needless to say, neither I nor Sharon (nor anyone else, for that matter) witnessed the event, which happened late on Thursday night, May 21. I was off in the kitchen grabbing something to drink and when I came back into the living room, this is what I saw:
Here's a close-up:
Of course, I flipped Lea right back over onto her back and watched how, within seconds, she was back on her tummy.
What's more, Lea has amazingly good head control; while this is not evident at all in the shots above, you can see what I mean here:
So, ever since Thursday, Lea spends most of her waking hours (which decidedly are NOT during the day but in the evening and at night) practicing her moves. She has mastered rocking from her back to her side and then onto her back once more but she has not yet tried to go from belly to back. And it often seems that she surprises herself when she lands on her belly and seems to wonder, 'What the heck am I doing here? Why did I do this?' It's all pretty funny.
Of course, even though parents should not compare their kids, Sharon and I have been struck by the fact that we have not had to teach Lea how to perform these moves; she just does them so naturally and effortlessly. And we cannot help but think back on when Hallie was little and how we had to teach her how to position her body so that she could flip over. It took months of practice before Hallie mastered this. Even though Hallie rolled over with some coaching at around three months corrected, she did not really begin rolling until she was well into her sixth corrected month and this with much training. Her next developmental milestones (sitting independently, scoot-crawling, pulling to stand, and even cruising) followed very quickly thereafter, but mastering how her body worked was a major effort for Hallie and a challenge for those of us who helped her along the way (namely, me, Sharon, her special instructor and her occupational therapist). For Lea, these are natural moves and we're getting a glimpse of what parenting your typical baby looks like.
The same is true of language development. Lea is cooing, shrieking, making cute cat-noises, and vocalizing lots of sing-song vowels right now, and often doing this by mimicking us. Sometimes it's not quite clear whether we're doing the mimicking or she is, but what it amounts to is a very rudimentary form of conversation. She has also begun to blow lots of raspberries. We experienced none of this with Hallie, who, between the vocal cord paralysis and her language delay/disorder, was a very quiet baby. Hallie is finally beginning to do quite a bit of talking at home, or at least when she is feeling comfortable, but she's still quieter than your average kid, especially in public. Between shyness, a lack of confidence about speaking (since we really do think she understands that this is a major issue for her, and for us), and her expressive language limitations, speaking -- and especially conversing -- remain a real struggle for her. She will talk now, and she even is using sentences consistently. Most of these are requests ("circle icey please!") or descriptions ("I sign 'tree'") but at least her language is coming in. But skill acquisition and refinement remain so hard for Hallie and something upon which we have to work, work, work. We suspect that this will be far different for Lea.
Speaking of Hallie and skill-building, we had our IEP last week. The meeting itself went more smoothly than I thought it would and the team that the Local Educational Agency (Elwyn) assembled seems pretty good. My preparation of IEP goals, with the assistance of Hallie's speech and occupational therapists, did provide some good guidance and, with the exception of several sticking points, the IEP itself is fine.
Nonetheless, these are important sticking points. Some of the goals specified, particularly by the Special Instructor, seem to be set too low. For instance, one of the goals is that Hallie will use social greetings with adults without prompting. Hallie is basically doing this already and has little problem saying "Hi so-and-so" when she sees so-and-so. What she cannot do is take the conversation to a meaningful level beyond that. That should be the goal upon which to work, and not social greeting.
Likewise, Hallie is already following one-part commands with little guidance (as long as you get her attention) and this should not be a goal (as it is now). Rather, she has more problems with two-part-related and unrelated commands. She can do the former fairly well and the latter not at all. These should be our goals.
Not all of the IEP goals were low-balled, but we do need to correct the ones that were. And we need to have her re-evaluated for Physical Therapy sooner than four months from her 3rd birthday. This is a major weakness for Hallie, and unfortunately she has had no PT service at all thus far. We are unsure that twice monthly PT visits are sufficient and need to know whether it's essential to step these up in terms of frequency sooner than September or October.
The real sticking point, though, is procedural. The LEA never explored placing Hallie into a publicly-funded regular preschool situation and came into the IEP meeting with a sole placement in mind: a reverse mainstream school. The IDEA stipulates that the LEA is required to explore a continuum of placements beginning with schools for typically developing children and only moving down to programs that are more restrictive if it's impossible to place her in a program that is less restrictive that is appropriate for her educational needs, even if she requires supports in that program. That never happened. We did try to get Hallie into a Head Start program down the block that seems very good (has dedicated classes in movement, music, and art each day that are taught by specialists in these fields, a very small classroom for beginning students, etc) but the program is full and, while Hallie is number one on the waiting list by virtue of her disabilities, it's not likely that she'll get into that program. For various reasons, we do not want Hallie in the program that is the more restricted environment, and we did a lot of legwork to find her a placement in a private program that is geared toured typical children but inclusive (and very supportive) of students with IEPs, but given that the LEA fell short of fulfilling its legal mandate, our goal is to see if we can get it to defray the cost of the private program. I'm not sure how far we want to go in pursuing this but it's worth a shot, at least. Hopefully we'll be able to resolve this all relatively amicably before Hallie needs to start school, but the special education/IEP saga continues for now.
One last update before I call it a night: we took both kids in to see the pediatrician today and Lea weighs 12 lbs, 9 ounces and is 24.5 inches tall. She's at around the 40th percentile for height and about the 25th for weight. Thus, she's not much bigger than Hallie was at this age (at just over four months, Hallie weighed 12 lbs. 9 ounces). That sort of surprised me.
Hallie weighs an even 31 lbs (but this is with a dry diaper on) and is 37.5 inches tall. She's just around the 60th percentile for both height and weight. It's nice that she's caught up in something!
We were a bit disenchanted with the ped today, and not only because the office visit took two hours and both kids were distraught by the end of it (and Hallie ended up missing her nap as a result of all of this). He seemed dismissive of our concerns about Hallie's development and suggested only that we should throw her into a typical preschool with no supports at all to see how she does. He doesn't seem to get Hallie (in contrast to the Developmental Ped, who totally got her). As Nadia pointed out, Hallie shuts down when overwhelmed and she finds little more overwhelming than a big room (or schoolyard) full of kids running around. Shutting down won't help her language, or any of her other skills, in the least. She's not going to just start having conversations because other kids are having them and she's not just going to start eating three square meals, two snacks, and two cups of milk because that's what other kids do. As our Developmental Ped noted (and as the story about rolling over with which I began all of this suggested), Hallie needs to be taught skills, she needs to rehearse skills, and she needs to trust her environment in order to practice her skills. A lot of good things are happening right now in terms of her development because her Floortime DIR therapy (and our use of it and the Hanen method at home) are really empowering her. She's surrounded by people sensitive to her interests who are helping her close conversational (and gestural) communicative interactions. We are hoping that her Special Instructor, Speech Therapist, and sensitive preschool teachers who are aware of her delays and issues will build off of these interests in assisting her negotiate the communicative challenges she will face in preschool. These supports are not gratuitous and won't label her so much as help her catch up (at least that's the plan).
Our ped is worried that these things will stigmatize her. He is similarly worried that not eating ice cream will be a source of stigma and that getting her checked out by a Ped Neurologist to see whether she has CP could stigmatize her. This is something that I am increasingly concerned about since Hallie's gait and run are very awkward and unnatural looking; Hallie falls a lot and cannot negotiate stairs even with the support of a banister and sometimes even with support of a banister and a person holding her hands. And I cannot begin to count the number of times I've heard the phrase "well, she has low tone throughout her entire body" in the past month. When things quiet down around here, we probably will ask for this referral (even if he does not like giving it to us) because, if she does have mild CP, there are perhaps things we can do to help her that we are not already doing. Our plan as parents is to provide Hallie with all the support that we possibly can to help her be the best possible Hallie she can be. That was what we signed on for when we made the momentous decision to resuscitate at 23 weeks, knowing the risks she faced both in the NICU and down the road, and anything short of doing everything within our potential that we possibly can for her simply feels like dropping the ball on her. And that's not something either of us ever want to do (unless, of course, it involves burying her in a ball pit to satisfy sensory cravings, but that's another matter altogether).
But before I end this post, a few more cute pictures are in order:
Hallie playing "This Little Piggy" with Lea's toes. She said the whole thing, and then went on to repeat the process on one of her dolls.
Hallie's been doing much more in the way of real pretend play these days. This is an emerging skill and still quite fragmented, as our Floortime/DIR therapist puts it. But she's moved beyond the basic social emotional levels that are the first stages described by Stanley Greenspan (Floortime guru) and onto more sophisticated stuff. Here Elmo is having a conversation on the telephone:
And here Hallie has put her dolls to sleep (borrowing a few burp cloths from her sister in the process):
And, speaking of burp cloths, I did get a shot of Lea loving on one of them:
Not to be outdone in the sensory department, here's Hallie after she buried herself in the couch cushions:
And, finally, not a picture, but an important statistic: we're up to 99 days without vomit this year and this is amazing to us. Last year we were closing in on Labor Day by the time we reached this goal; this year, we're not even quite at June. Woo hoo!
Monday, May 18, 2009
When Development Happens Differently
Well, here it is, the big development post. I have a few moments (I HOPE!) while both kids are down for their naps, and if I don't begin this now, I doubt that I'll ever write this post. I've sort of been dreading it for days.
Let's start with the good stuff, which is not in the evaluations that we have received for Hallie. First, Hallie really is beginning to expand her language spontaneously. She is singing songs to herself these days (three favorites are the ABC song, of course, and Old MacDonald's Farm, and the theme to Elmo's World). We're also hearing more several-word phrases ("big, big, red firetruck!" is for some unknown reason a personal favorite of hers right now; but she's also using a lot of modifiers for lots of different nouns and asking for things using multiple word constructions that are far from rote "put it on!" "push me, Mama!" "i want circle icey"...since apparently she prefers the storebought ice to our icemaker's rectangular output). We have also been sitting her down and asking her "what" questions and, if she is paying attention to what we are saying, she can answers these accurately most of the time ("what is Caillou riding?" we inquire and she retorts, "a bicycle." "What is on his head?" to which she says, "a helmet."). It's also clear that Hallie is reading a greater number of words than we knew she knew. We knew about "dog," "baby," and "bus" but it turns out that she can read "cat," "water," and several others. She also can recognize what words are from their signs. She has ASL flashcards with the sign and word on one side and a picture and word on the other. If she knows the word by sight, and you cover the sign, she can tell you the word just from the letters. If she doesn't, she pushes aside your hand, looks at the sign and tells you what it means. We own around 50 of these cards and she knows most of them and understands the concepts that they represent. Yesterday, I sat with her on the bed and played with them with her (they are among her favorite toys). I asked her what and function questions like "which one do you drink?" giving her a choice between water and cracker and "which one barks?" giving her a choice between duck and dog. She got 11 correct out of 11 and then lost focus.
Which brings us to one of the main issues that we are having with her right now, which is that of attention. She has no problem demonstrating attention and joint attention (with us) if she is interested in a task or game but as soon as she loses interest, which is often only after a minute (yesterday's game took two minutes or so to complete, so it was an extra long engagement for her), she starts to stare off into space, doesn't seem to care about the answer being right, dumps all the lacing beads, etc. She has a longer attention span for sensory activities (burying herself in balls or stuffed animals, jumping up and down on the couch, swinging etc), which is not terribly surprising given her sensory seeking profile, but we are at a loss as to how to improve her attention span and are beginning to think that ADHD seems like a diagnostic path down which to consider barking.
So those are the good things, and the guarded things. The bad things are the ones that are contained in her evaluations. It turns out, according to the Multi Disciplinary Evaluation (MDE) done by the agency to which the Philadelphia School District outsources its testing and service coordination of 3 to 5 year olds that, on average, Hallie is 32% delayed. The delays break down as follows:
1. Social/Emotional Development: 68% (32 % delay)
2. Adaptive Behavior/Self Help Development: 76% (24% delay)
3. Physical Development: 74% (26% delay)
4. Cognitive Development: 76% (24% delay)
5. Communication Development: 65% (35% delay)
General Development: 68% (32% delay)
In other words, at 34 months, she came out as being at around 23 months developmentally. Our big fear is that things will get worse if she remains this far delayed down the road (think of a 9 year old acting like a 6 year old and you get the picture). Some of the delays will undoubtedly improve if she gets services; for example, our gross milestone-meeting kiddo has never had PT and needs it desperately. No one seemed to care that the quality of the way in which she was meeting some of those gross motor milestones was substandard (for example, scoot-crawling rather than up on all fours, running with arms out way beyond when you are supposed to, and falling when there is the slightest unevenness to the surface, such as the transition from pavement to curb or pavement to schoolyard mat). PT will no doubt help her with this. But lingering in the back of my mind, at least, is whether Hallie has a mild and undiagnosed case of CP that prevents her from doing stuff like walking up and down stairs unassisted (she cannot do this, even if holding onto a banister) or pulling herself up on playground equipment. She wants to do these things but cannot, and so she compensates (she will resort to crawling the stairs) but she also does get into physically dangerous predicaments (like getting halfway up the monkey bar ladder and then having her strength give out). It makes it impossible for me to take her to the playground without watching her constantly and heading up the equipment with her, which is impossible for me to do if Lea is strapped to my body, and so we don't go to the playground unless someone else is watching Lea. This totally sucks because it also means she gets less practice and work out time to help build the strength she needs.
Of greater concern are the cognitive, social/emotional, adaptive, and communication delays. I do think that they underestimated Hallie's receptive skills by a considerable amount (her CHOP evaluation at 33 months placed her cognitively at 26-27 months, which we felt was far more accurate), but even so, she is not quite doing the stuff that a kid her age (even her corrected age is doing). One of our senses, given the recent Sensory Profile we had done, is that her sensory issues are getting in the way. She scored as definitely under-sensitive to Auditory Senses and as having an impaired Auditory Processing Function. This means that "Hallie almost always requires others to speak loudly in order to get her attention and is distracted in noisy environments. She frequently requires tactile cues in order to attend, ignores others when they are talking, finds ways to make noise with toys, and requires increased time to respond when her name is called. Auditory processing deficits may impact Hallie's ability to attend and participate in functional activities until completion." They will definitely make it harder for her at school.
She has a probable difference in visual processing, too. She likes looking at herself in mirrors more than others do, she loves bright and fast paced shows and frequently avoids eye contact.
She has a definite difference in terms of her tactile processing. Which means that she enjoys playing with food, splashing, finger painting, etc to distraction and this is what causes her to dump blocks on herself, bury herself in stuffed animals etc. She is seeking out sensory stimulation to get information she needs in a way that other kids don't need to do.
Her vestibular processing also comes off as definitely different. She needs to swing, jump on trampolines, spin, be bounced and tossed around on therapy balls to get the vestibular input she needs to calm herself. One thing we've been trying to do is give her this input before she attends to a close, fine motor table-top task in the hopes of improving her attention on the latter task.
And of course she has oral sensory processing issues. Some of these are related to her food issues that are medically based and are getting better over time. We can only hope that she stops putting toys and other inedibles in her mouth and starts putting more food in it (and sensing that it's there...she has been doing some food pocketing lately that is worrisome).
Anyway, a lot of the sensory issues, taken in combination with the communication/language issues have made Hallie seem pretty spectrumy (as in ASD). Right now, she's cleared of this, but depending on what happens next, she may well find herself back on the spectrum.
Meanwhile, we need to figure out how to help a kid like ours learn in school. Staying on task and communicating are the issues that I am focusing on right now, but that's just the tip of the iceberg. Meanwhile, I've had huge knots in my stomach and a major headache in anticipation of the IEP that is upcoming on Wednesday. Things have not gotten off to a good start with the agency handling 3-5 year olds in special education (this is a major understatement) and I have an impending sense of doom and dread. I am hoping that I am just being my Telly-like self (as in the Sesame Street character) and that all goes better than we fear it will and that we get the placement we want. Check back later in the week for an update (if I have the energy and emotional capacity to do one, that is!)
Meanwhile, I'll leave you with a brief update on food and vomiting. We made it to 90 days and then, likely as a result of some Burger King Chicken Fries, had a horrific day yesterday. Still, a 15 day run of no vomit seems pretty good to us and Hallie seems to be on the mend today (and is getting a very nice nap in, too, which she really needs considering that she woke up at 2am on Sunday and tore her room apart for three-ish hours before falling back asleep and had a really awful day yesterday that involved two bouts of vomiting).
And, for those of you who tune in for the pictures, I will leave you with this charming photo of a sisterly stretch:
Let's start with the good stuff, which is not in the evaluations that we have received for Hallie. First, Hallie really is beginning to expand her language spontaneously. She is singing songs to herself these days (three favorites are the ABC song, of course, and Old MacDonald's Farm, and the theme to Elmo's World). We're also hearing more several-word phrases ("big, big, red firetruck!" is for some unknown reason a personal favorite of hers right now; but she's also using a lot of modifiers for lots of different nouns and asking for things using multiple word constructions that are far from rote "put it on!" "push me, Mama!" "i want circle icey"...since apparently she prefers the storebought ice to our icemaker's rectangular output). We have also been sitting her down and asking her "what" questions and, if she is paying attention to what we are saying, she can answers these accurately most of the time ("what is Caillou riding?" we inquire and she retorts, "a bicycle." "What is on his head?" to which she says, "a helmet."). It's also clear that Hallie is reading a greater number of words than we knew she knew. We knew about "dog," "baby," and "bus" but it turns out that she can read "cat," "water," and several others. She also can recognize what words are from their signs. She has ASL flashcards with the sign and word on one side and a picture and word on the other. If she knows the word by sight, and you cover the sign, she can tell you the word just from the letters. If she doesn't, she pushes aside your hand, looks at the sign and tells you what it means. We own around 50 of these cards and she knows most of them and understands the concepts that they represent. Yesterday, I sat with her on the bed and played with them with her (they are among her favorite toys). I asked her what and function questions like "which one do you drink?" giving her a choice between water and cracker and "which one barks?" giving her a choice between duck and dog. She got 11 correct out of 11 and then lost focus.
Which brings us to one of the main issues that we are having with her right now, which is that of attention. She has no problem demonstrating attention and joint attention (with us) if she is interested in a task or game but as soon as she loses interest, which is often only after a minute (yesterday's game took two minutes or so to complete, so it was an extra long engagement for her), she starts to stare off into space, doesn't seem to care about the answer being right, dumps all the lacing beads, etc. She has a longer attention span for sensory activities (burying herself in balls or stuffed animals, jumping up and down on the couch, swinging etc), which is not terribly surprising given her sensory seeking profile, but we are at a loss as to how to improve her attention span and are beginning to think that ADHD seems like a diagnostic path down which to consider barking.
So those are the good things, and the guarded things. The bad things are the ones that are contained in her evaluations. It turns out, according to the Multi Disciplinary Evaluation (MDE) done by the agency to which the Philadelphia School District outsources its testing and service coordination of 3 to 5 year olds that, on average, Hallie is 32% delayed. The delays break down as follows:
1. Social/Emotional Development: 68% (32 % delay)
2. Adaptive Behavior/Self Help Development: 76% (24% delay)
3. Physical Development: 74% (26% delay)
4. Cognitive Development: 76% (24% delay)
5. Communication Development: 65% (35% delay)
General Development: 68% (32% delay)
In other words, at 34 months, she came out as being at around 23 months developmentally. Our big fear is that things will get worse if she remains this far delayed down the road (think of a 9 year old acting like a 6 year old and you get the picture). Some of the delays will undoubtedly improve if she gets services; for example, our gross milestone-meeting kiddo has never had PT and needs it desperately. No one seemed to care that the quality of the way in which she was meeting some of those gross motor milestones was substandard (for example, scoot-crawling rather than up on all fours, running with arms out way beyond when you are supposed to, and falling when there is the slightest unevenness to the surface, such as the transition from pavement to curb or pavement to schoolyard mat). PT will no doubt help her with this. But lingering in the back of my mind, at least, is whether Hallie has a mild and undiagnosed case of CP that prevents her from doing stuff like walking up and down stairs unassisted (she cannot do this, even if holding onto a banister) or pulling herself up on playground equipment. She wants to do these things but cannot, and so she compensates (she will resort to crawling the stairs) but she also does get into physically dangerous predicaments (like getting halfway up the monkey bar ladder and then having her strength give out). It makes it impossible for me to take her to the playground without watching her constantly and heading up the equipment with her, which is impossible for me to do if Lea is strapped to my body, and so we don't go to the playground unless someone else is watching Lea. This totally sucks because it also means she gets less practice and work out time to help build the strength she needs.
Of greater concern are the cognitive, social/emotional, adaptive, and communication delays. I do think that they underestimated Hallie's receptive skills by a considerable amount (her CHOP evaluation at 33 months placed her cognitively at 26-27 months, which we felt was far more accurate), but even so, she is not quite doing the stuff that a kid her age (even her corrected age is doing). One of our senses, given the recent Sensory Profile we had done, is that her sensory issues are getting in the way. She scored as definitely under-sensitive to Auditory Senses and as having an impaired Auditory Processing Function. This means that "Hallie almost always requires others to speak loudly in order to get her attention and is distracted in noisy environments. She frequently requires tactile cues in order to attend, ignores others when they are talking, finds ways to make noise with toys, and requires increased time to respond when her name is called. Auditory processing deficits may impact Hallie's ability to attend and participate in functional activities until completion." They will definitely make it harder for her at school.
She has a probable difference in visual processing, too. She likes looking at herself in mirrors more than others do, she loves bright and fast paced shows and frequently avoids eye contact.
She has a definite difference in terms of her tactile processing. Which means that she enjoys playing with food, splashing, finger painting, etc to distraction and this is what causes her to dump blocks on herself, bury herself in stuffed animals etc. She is seeking out sensory stimulation to get information she needs in a way that other kids don't need to do.
Her vestibular processing also comes off as definitely different. She needs to swing, jump on trampolines, spin, be bounced and tossed around on therapy balls to get the vestibular input she needs to calm herself. One thing we've been trying to do is give her this input before she attends to a close, fine motor table-top task in the hopes of improving her attention on the latter task.
And of course she has oral sensory processing issues. Some of these are related to her food issues that are medically based and are getting better over time. We can only hope that she stops putting toys and other inedibles in her mouth and starts putting more food in it (and sensing that it's there...she has been doing some food pocketing lately that is worrisome).
Anyway, a lot of the sensory issues, taken in combination with the communication/language issues have made Hallie seem pretty spectrumy (as in ASD). Right now, she's cleared of this, but depending on what happens next, she may well find herself back on the spectrum.
Meanwhile, we need to figure out how to help a kid like ours learn in school. Staying on task and communicating are the issues that I am focusing on right now, but that's just the tip of the iceberg. Meanwhile, I've had huge knots in my stomach and a major headache in anticipation of the IEP that is upcoming on Wednesday. Things have not gotten off to a good start with the agency handling 3-5 year olds in special education (this is a major understatement) and I have an impending sense of doom and dread. I am hoping that I am just being my Telly-like self (as in the Sesame Street character) and that all goes better than we fear it will and that we get the placement we want. Check back later in the week for an update (if I have the energy and emotional capacity to do one, that is!)
Meanwhile, I'll leave you with a brief update on food and vomiting. We made it to 90 days and then, likely as a result of some Burger King Chicken Fries, had a horrific day yesterday. Still, a 15 day run of no vomit seems pretty good to us and Hallie seems to be on the mend today (and is getting a very nice nap in, too, which she really needs considering that she woke up at 2am on Sunday and tore her room apart for three-ish hours before falling back asleep and had a really awful day yesterday that involved two bouts of vomiting).
And, for those of you who tune in for the pictures, I will leave you with this charming photo of a sisterly stretch:
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