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Wednesday, August 5, 2009

The Preschool Post

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

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

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

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

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

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

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

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

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

This was an omen of things to come.

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

Responsible the PCA was not.

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

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

This was not going so well.

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

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

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

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

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

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

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

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Sara Cohen said...

What an ordeal! I am glad that you have found a PCA you like and hope that Hallie continues to adjust to her new shcedule. keeping my fingers and toes crossed that all goes well!

Vicki said...

Yay for Hallie!
Even parents of typically-developing children often have to deal with situations like this and have to adjust and readjust and fine-tune everything for a while before everything seems to "work". Sounds like you're doing everything right, as usual.

Glad you kicked that PCA to the curb.

Dubin said...

This is a poignant and also wonderful story... it's work but she is (and you are) meeting it head on and I think all will benefit! I'm so glad her new aide is better... By the way, when do we hang out? Time's a ticking... (boooo)...

Robin Elizabeth said...

So sorry things were tough in the beginning. Getting a new PCA was a great choice. I've done it with a TSS. Our kids come first. Nothing more heartbreaking than leaving a child cring for you.

So glad Hallie is doing well now.

BusyLizzyMom said...

Glad to hear that you have a much better PCA who will be more in tune to Hallie and her needs. Finding someone who understands some of your social concerns is huge.
Hopefully the bumpy beginning is smoothed over and Hallie can reap the benefits of pre-school.

Jo said...

Good grief. I can't believe they sent someone so ill-qualified to be her PCA. That's just awful. I was really beginning to worry about where that story was going. BUT, I'm so glad you have someone now who is so good. I'm sure with a child of her own with special needs, she understands and wants Hallie to get the most of her social experiences.

I hope it continues to go well when school is back in session. It's great that she mad so much progress in such a short time.

:-) Johelen