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Friday, September 4, 2009

Back to School...or The More Things Change the More they Seem the Same

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Hallie returned to school bright and early this morning. While one might attribute the soft glow and ambient lighting (read: fuzziness) of this picture to creative editing, sadly this is not the case. Rather, both of Hallie's over-educated mothers were seemingly unable to realize that the greasy hands of their preschooler (who grabbed host of the camera last night) had dirtied the camera lens and not the view-finder. So, alas, we have no good shots of our little preschooler who, in contrast to the last time we tried to do this back in July, happily mugged for shots on the steps of our house and who clearly understood that she was headed off to preschool and was thrilled at the prospect.

Sharon and I walked Hallie and her stuff to school in the stroller while Hallie sat in her throne singing and talking to herself. We were filled with joy: this time around Hallie was so ready for school and was in her own element. She knew her teachers, most of the other children (there are some new additions to the YCCA roster but most of the kids in her class, the Blue Moons, had attended summer camp with her), and had her supports in place. Sharon and I hoped that we would be able to leave her at school with nary a tear (a real prospect since Hallie stopped crying when I dropped her off about ten days before camp ended) and in good hands whom we trusted.

Or so we thought. You can kind of guess where this is going based on the buildup, no?

Anyway, as it turns out, we had kind of a redux, with a few important distinctions (some good, one bad), of the very first day of summer camp. As on that day, Hallie's PCA (personal care assistant) was nowhere to be found. This time, at least, we knew the teachers and they knew Hallie and we were able to both leave, with the proviso that we send Nadia (our nanny/mother's helper) to assist Hallie during play time and meal time. Unfortunately, Nadia could not stay for the full day (we would have happily paid her to do so but she had other plans; she only works for us part time), but the teachers were willing to have Hallie there on her own for a couple hours of the day since she really is not a terribly disruptive little kid.

Like last time, I ran home and started some frantic phone calling. First, I called the aide herself. She is a very responsible, very professional person who has been doing a great job with Hallie and my sense was (and is) that some wires had gotten crossed somewhere, even though I had been over the schedule with her several times as I made the arrangements with Elwyn for her to be present several days before the Special Education 3-5 program begins here. (For whatever reason, and likely not a good one, Elwyn has decided that it's okay for the special ed kids to start school after all the typical kids do--in this case, a week after they do--and to have all of these random days off that typically developing kids do not. The logic here is, umm, impeccable: this all seems to be predicated on the notion that, if you have disabilities and delays, you quite obviously need less time in school rather than the same or more. But I digress).

Anyway, I called the aide at 9:05, when we discovered that she was not there, and again at 11:30, when she was still not there. I then called Elwyn, and of course could not get hold of a live person with whom to discuss this matter. I don't want to get the aide in trouble; like I said, she is really good with Hallie and really quite professional and I'd like this relationship to be an ongoing one. At the same time, my kid had no aide today and if this happens again on Tuesday and Wednesday (also non-service days, but Elwyn owes us lots of hours given the repeated absence of PCA #1), Hallie will not be able to attend school. She loves school and is learning a lot there and is making good progress and we want her to be able to attend. Heck, she deserves to be able to go to school with everyone else. (And we are, after all, paying for it, regardless of whether she misses a day because her aide is absent).

Part of me is quite worried about the aide, who has a sick one and a half year old and an autistic eight year old. I am concerned that something happened to one of the kids. But the other part of me knows that, as a professional, she would have or at least should have contacted me if this were the case. And a third part of me is anxious that, like so many others in Hallie's life (her former nanny, for one, but also one of her speech therapists), the aide is just going to drop off the face of the earth with no warning and prove herself as unreliable as the aforementioned others. This would cause a logistical headache (needing to begin this process all over again, needing to train yet another person to work with Hallie, existing once more on pins and needles that something is going to go wrong with the process, etc etc). It also provokes in me great sadness: how in the world is my sweet little kid supposed to learn love and trust when she is constantly let down by folks who state that they love her (as did the old nanny, as did the disappearing speech therapist) and who claim that they were eager to organize their lives (or at least their schedules) to accommodate Hallie because they cared for her so much, and who then just walk out of her life? Hallie has had a very long series of ongoing, intimate relationships with caregivers and therapists who have 'left her' in one way or another. I am not sure the extent to which she is aware of 'missing' these people, but I lament the end of these relationships even when there is some semblance of closure. I can only imagine (at least from my grown-up, not developmentally-delayed perspective) how much more traumatic this might be for a kid when there is no closure whatsoever and the caregiver/therapist in question just disappears one day without notice. Hopefully I'm just jumping the gun here/over-reacting (I have been known to do this on occasion), but this hits a raw spot for me.

Back to the practical, short-term situation: I'm not really sure what to do other than to call the aide, regularly but not constantly, and hope that I get a hold of her. If I don't, I will try to track her down first thing Tuesday morning (I'm not exactly sure how; I don't have the phone number of the agency with whom she works). So we're existing a bit on edge around here.

Happily, though, Hallie had a great first day back at school. She took leave of Sharon and I with no fuss and joined her friends and teacher in her group immediately. From Nadia's report, I know that she required little redirection to stay on task and that she did her arts and craft project (making a flag for Labor Day) completely independently. She had a great time in story time and music time; ate lunch with no complaint entirely on her own (it was her best meal of the day, ironically) and happily went down for her nap. Moreover, the teachers felt that she was no trouble at all for the couple of hours that she was there on her own. So all that is good.

I was so proud of our little girl and happily rewarded her with a mango water ice (which she ate entirely on her own, with gusto) during our walk home from school. We stopped in at the grocery store to pick up a few things, which did not quite please Hallie, who now lets me know this verbally. She is quite fond of the phrase, "Let's go home!" and uses it unsparingly these days.

Hallie was exhausted by the time school was over (we have to get her back on schedule; she was staying up a little later than usual during break) but remained in a good mood until dinner (during which she was over-tired and exhibiting some bad behavior, perhaps picked up from one of the other kids with special needs at the school who refuses to eat). Hallie went down to sleep easily and hopefully will wake up rejuvenated and eager to play with her friend Eliza Grace, who is coming to visit tomorrow.

Anyway, the day went well, all things considered, and we are pleased that Hallie loves school but anxious about what next week will bring. And we're kind of sick and tired of dealing with trying to coordinate all of the services and supports that Hallie needs, over and over again, seemingly without end in sight. Nevertheless, as is always the case, we'll do what we need to do to make this work.

1 comment:

punkymama said...

I have a neighbor whose son is autistic. She fought Elwyn on the non service days and days off. Her son missed so many days of service and the providers kept changing she fought and fought Elwyn. She is now at the point where they go to court and she is about to take over managing her sons care with hand picked professionals and Elwyn will have to reimburse her.

hang in there. The elwyn machine is tough to manage at times.

My days with Elwyn(Ken Crest where I live) are over finally now I am managing within the school itself.