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Wednesday, September 9, 2009

Another Let Down

Well, my hunch and fears have materialized: Hallie's excellent PCA (Personal Care Assistant) has, indeed, quit on her. I sensed that something was up when she did not call me back after not appearing at school last Friday. It took until Sunday afternoon to track her down, and when L. picked up the phone, she sounded distant and a bit odd to me. Trying to give her the benefit of the doubt, I chalked this up to her 18 month old daughter being very ill and accepted her excuse that she was too busy to call me in advance to explain that she would not be attending school with Hallie on Friday. But this did not really explain why she did not return any of my calls to her. She told me that she would know more on Tuesday and call me then.

Since Hallie had school today, I couldn't drop the ball and not contact Elwyn this morning to let Hallie's service coordinator know what was up. We at least needed to locate a substitute to attend school with Hallie on Tuesday and Wednesday and perhaps the rest of this week while L.'s daughter was still hospitalized. So I was on the phone, leaving messages for Hallie's service coordinator and her supervisor bright and early this morning.

The service coordinator finally got back to me around 11 am and promised me she'd track down the person at the placement agency responsible for securing a PCA for Hallie. (Yes, there are A LOT of middlemen in this process and that is part of the problem. On the one hand, it means that a lot of phone tag is involved in the process and, on the other, I am sure that it means that the PCAs themselves earn a whole lot less than the agency receives for their services).

Anyway, I heard back from her at 2pm (an hour before Hallie's school day begins on Tuesdays). She informed me that L. had taken a permanent job and that the agency representative had put out an emergency call and found a replacement for L. who was "very reliable and had been with him for years." She will be starting tomorrow, to work with Hallie "indefinitely."

I hate to parse words (well, not really; indeed, much of my professional identity revolves around parsing words), but I have some reservations about the use of the terms "reliable" and "indefinite". Pardon my considerable skepticism, but I will believe these things if they come to pass (notice my reluctance to use the phrase "when they come to pass").

So, tomorrow, we will need to meet someone new and I will have to pass off Hallie to the care of yet another someone who does not know her. I will have to "train" this person (the official mediation agreement includes a statement allowing four hours of training for each new PCA but this never happened with A., the first PCA, because she flaked on us very quickly or L., the second, who did not require training because she "got it.") And I will have to pray that this new person is 1. sensitive and decent and deals well with Hallie, who is, thankfully, very easy to deal with 2. does her job correctly, which not only means standing back and letting Hallie do her thing and intervening to redirect her when needed but also helping to facilitate Hallie's communication and socialization with her peers and growth more generally. Oh yeah, and I hope she actually does show up and other basic stuff like that.

We are very disappointed. L. really was a good PCA and it was during her brief tenure with Hallie that Hallie experienced huge social growth. She also was getting the potty training thing underway. And Hallie loved her. And, like so many others, she has just disappeared on Hallie without a trace or so much as a good bye.

Hallie's teacher was dismayed when I told her about this when I dropped Hallie off to school today. The YCCA has been great: they have bent their sensible rule for Hallie so many times (the director quite rightly believes that a real education for Hallie right now involves Hallie having a one-on-one support/shadow person and technically we need to keep her home if the aide fails to materialize). Ms. Kerry, Hallie's teacher, was fine with Hallie attending today (and last Friday afternoon) without a one-on-one, but it makes things harder for them and for Hallie. Ms. Kerry could not believe that someone who cared about kids would just drop the ball on one of them. The least the aide could have done was given us notice and Elwyn time to find a suitable replacement. I do understand the economics involved and that it is better to have a full-time job than it is to have several part-time positions, but the way that L. handled things was simply and purely unprofessional.

We are so grateful for the YCCA: the teachers there are all caring professionals who put the kids first. We are very happy (and relieved) that we chose to place Hallie at this school and fight the good fight with Elwyn over this. Even though the school is more expensive than the "free" alternative with which they would have provided us, we are more than happy to have the headache of absorbing the extra cost since we know that our kiddo is safe and well cared for at the YCCA. I don't even want to imagine what might have happened to Hallie had her PCA gone AWOL at the reverse mainstream "free" school or even a Head Start program with teachers who are less caring and in control and where Hallie is just another kid with special needs who cannot articulate her needs and who therefore doesn't count (and who cannot tell on them).

Despite L.'s absence, Hallie had a great time at school today. She was eager to go to "fun, fun preschool." She woke up from her nap and told me "I go to preschool now" and got her shoes on and raced out to the stroller. When I dropped her off, she ran to join her friends who were in the playground and said hi to each one fo them personally. While I was talking to Kerry, she grabbed a ball and initiated a game of catch with one kid, hopped on a trike and rode that for a few minutes, and went off to talk with another clump of children. She had a great time and only experienced a rare two minute meltdown at 5:26 when one of her best friends was picked up by her daddy (I came in right after Ella left the building and Hallie was fine again). The meltdown was no doubt related to Hallie's exhaustion and lack of napping over this long holiday weekend. Getting her back on her schedule will help enormously with short-circuiting this rare meltdown stuff.

In other Hallie news: yesterday Hallie stubbed her toe while running through the dining room and ran over to us saying "My foot hurts!" We were thrilled at this. I know this sounds strange, but this was the first time that Hallie was able to articulate that she was hurt and what part of her body, specifically, was ailing her.

Hallie also had a phenomenal Floortime/DIR session today. She was chatty; closed many, many 'circles of communication'; and exhibited a lot of engagement with me and Steve, her psychologist. Steve and I were both extremely impressed with her.

Eating is so-so, at best. But she has not vomited at all lately (yes, I will probably regret this disclosure) and we are now up to 176 days of spew-free bliss.


Sara Cohen said...

It makes me so sad to hear that so many people come and go in Hallie's life. I guess when there are so many people involved (pt, ot, PCA, etc) there's bound to be some "abandonment" but this constant let-down is really a shame. You both ocntinue to do amazing things for this amazing little girl and you inspire me to be the best mom that I can be. Keep up the good work!

Kate Butler said...

Oh, how disappointing and frustrating for you guys. We've had so many similar problems getting nursing hours, and when we do, getting -competent- nurses. It's such an unneeded source of stress for everyone.

Anne said...

This entire system sucks. Eliza expects the coterie of therapists of the past three years to show up each day and I am left saying that they have moved on to the next best thing.

Clearly I am in "bitter angry shrew mood" on Hallie's behalf and Eliza's behalf. These caretakers and teachers forget to show up or they forget to feed them and we are supposed to shrug it off.