Thursday, March 5, 2009

Updates and Downdates

Doesn't it always seem to be a bit of cognitive dissonance when an "economic UPdate" comes on the TV or whatever, and then the news is all about how things are spiraling DOWN?

Anyway. We've got both ups and downs here, so we got both updates and downdates.

UPDATE: Rose is feeling much better. She went to school on Monday, only a little worse for the wear (achy muscles from all the hurling). Cute Rose story from yesterday: we were in the car on the way home from piano lesson and she asked me, "Did men always used to have to have short haircuts?" I started an answer about how it wasn't that you had to have short hair, it was just...

"Tradition!" she supplied from the back seat. I chuckled and told her what a grown-up girl she was, that that was exactly the right word.

"Yep," she replied smugly. "I'm a human dictionary!"

That's my girl! A chip off the ol' OED!

UPDATE: Joy's "more" sign has persisted this week. She's not using it at every opportunity, but we're still seeing it occasionally. She also seems to have retrieved her old sign for "all-done," which consists of self-applause. Which makes sense, because what do people do when you finish an achievement? They applaud and praise you! She used it remarkably well at Tuesday lunch, when I was around the corner as she finished the food she wanted to eat. I heard the clapping and came running, and she was absolutely telling me she wanted to be done. And then I told her that she needed to eat a few more bites of ham before I'd let her get away with being "all-done." Heh. Little stinker.

DOWNDATE: Sigh. This one harkens back to my Rules post the other week, in which I ranted about the ridiculous conditions and hoops to jump through to get 3 months worth of House Blend therapy (at 4 hours per week) at our fabulous daycare. Our daycare lady, Lynda the Wonder Woman, provides just an ideal setting for therapist work, and is a full member of our team. The daycare setting provides Joy with the opportunity to work on generalizing goals that she's been working on at home, into her "home-away-from-home" setting where she gets to interact with more peers.

Well. The response came back last week.

They said that in the next 90 days, we could have FOUR of our 4-hour therapy weeks. We're to sprinkle them throughout the 3 months as we see fit, but the emphasis should be on training Lynda so that we can fade out the need to have the therapy at the daycare at all.

This is not a decision made with Joy in mind, or with any clinical basis in the situation. This is a bean-counter decision, made in service of an apparent crackdown on therapy hours outside of the home in general.

ALL kids need structure, and stability, and routine. Kids on the spectrum have an even greater need for structure, and stability, and routine.

So, let's jazz things up at daycare, shall we, with 4 hours of therapy in week 2 of twelve, and then we'll take two weeks off, and then we'll have another week with 4 hours of therapy, and then we'll take three weeks off...

You see what I mean. That kind of approach isn't particularly kind to barista-schedules either, might I add.

It looks like our only sensible option is to take all four weeks consecutively, starting next week. And then we're out. No more therapy at daycare. No further venue of appeal, other than the committee that handed down the decision to begin with.

Well, our particular case might not be appeal-able, according to the rules that are apparently being re-written and tightened as the months go by. But when the rules are THAT BAD, maybe someone needs to do something to get those rules changed in the right direction....

Will keep you posted. If I need help, I'll let you know that too. Not quite sure what form this will take yet.


mama edge said...

Just let me know what I can do. Are we thinking letters to the Legislature or a good old-fashioned sit-down strike? WE SHALL OVERCOME!

Anonymous said...

Glad to hear Rose is well and no one else had to take-up the bucket.

Woohoo! for more clapping! Not all done with expressing herself! Knocking on wood that continues - fortunately my table is wood and my head does not serve.

Who's been using their wooden-heads to make decisions on how much services Joy receives? Naah. Don't tell me. You know I get it - how the system works.

Some of the problems with limitations of OT and PT (pretty sure you are not referring to these, right?) is similar to what you describe.

Take a different, but systematically similar to autism diagnosis - CP. I think (imp to note - my opinion) therapy should be intermittent over the lifespan of the child - for re-eval to help all caregivers to modify per the child's growth/development. (Patience, please as I make my point.) Starting to look like the service frequency you have just been handed.

BUT, more frequently, I see some children receiving therapy on a 2x/week ad infinitum and some so severely limited that issues and problems cannot be adequately resolved.

The control of frequency is too far removed from the child. Some pros abuse the system (ad infinitum). But the system is set up to make it difficult to get back into after d/c for an interim.

When can or is it possible to request the same services again (not appeal the decision)?

Does she have to regress to get the services again?

These questions lead to another opinion of mine - that behavioral services are dispensed similar to medications (pills). Really.wrong.

One more thing to consider, the system resists supporting "maintenance". If the baristas are not documenting progress, that is a prompt to discontinue services. Their documentatin must demonstrate a need for them to be there (in daycare) in order for services to be considered necessary. Unfortunately, complimenting Lynda might work against continuing services.

Another (I know) word to research - is respite. A well-trained 'respite' person could act similar to a barista - however you would have to be the barista supervisor. In the waiver program here, family members can be paid to provide respite in the homes of children. (I'm aware of several paid grandmothers. It helps.)

Earning, perhaps abusing, my nickname today. Love to the JoyFamily. BRatK

word verification: ordenty

JoyMama said...

Thanks Mama Mara - first step, I think, is a short presentation at the next Autism Council meeting. I may be collecting signatures of those who wish to sign on with me, if I get advice from my inside sources (how cloak-and-dagger!) that this would be a good idea.

BRatK - our application was a highly-thought-out piece, a work of art really, presenting a rationale for generalizing goals to the daycare setting that Joy has been working on at home, and documenting the (considerable) progress she has made in the past 3-month time frame at daycare, with revised goals to suit.

There's really a nasty Catch-22 at work here. If Lynda is awesome, she don't need no stinkin' therapists to come to the daycare. If she's insufficiently involved, then it's not worth sending the therapists in the first place. If Joy makes progress, then she doesn't need the therapy to continue. If she doesn't make progress, then it isn't working so further therapy would be pointless.

Tricky, huh?

Thank you for mentioning the respite angle. That might just be the solution for the issues we've been having with Sunday school... hmmm...

Anonymous said...


Niksmom said...

p going through my (overflowing!) reader in reverse chron so I just saw this post. OY.

Glad your little human dictionary is back in form! And Joy's signs. :-)

The "downdate"...UGH. I understand exactly where you are. Wish I could do more than empathize. :-\

Elizabeth Channel said...

Arghh. That's all I can say. I've no wisdom to share but I do send my support for whatever it's worth!

Anonymous said...

I have to say I'm quite frustrated about having only a couple more weeks of intensive therapy at the daycare. My last kiddo in the program had 5 hours a day here! Sometimes with 3 therapists here in a single day. Alas, that was several years ago, and rules have changed a lot since then.

However, it's frustrating that the focus is on training me instead of having someone to help Joy to interact within a group of friends that I'm leading in an activity. Yes, I can certainly include her in our activities and do. But having someone one on one with her to help her within the group is what I'm looking at. In order for me to help her a lot more one on one within group situations, the group would have to be weedled down to two or three. And is that really a "group?" She will certainly have more than three kids in her class at school.
I've seen trained OT's PT's, S&L, and educators struggle to concentrate solely on Joy while involving other daycare kiddos in an activity. So I refuse to feel guilty about thinking it would be very beneficial for her to have more intensive therapy time here at the daycare.

OK, that's my rant for the day. I'm still hoping we can get a few more hours in the summer months.

Anonymous said...

Thanks, Lynda, for helping me put words to something I think I have not before.

Let's see...
If she requires one-on-one, she might not be ready for learning in a group.

Ooo. Don't shut me off yet. Seems to me that the set-up of a group learning situation with one adult attending to Joy's needs only works on the premise that Joy will learn to work in a group

I'm not sure I buy-into that. I can think of lots of behaviors that do not happen until the child's nervous system is physiologically ready - THEN giving the proper prompts helps. (Example - potty training.)

I've got to pose the question regarding the children of several years ago who had 5 hours/day of therapy - can anyone definitively tie their progress to the amount of therapy? I would be skeptical of an affirmative answer.

Clearly, Lynda, you are not in need of training for managing children - unless you make the example of the too-many-spinning plates JM manages. I mean, they might be trying to train you to do something that is just not possible.

And Lynda, I encourage you in throwing-off any attempts to make you feel guilty.

Being in a longer-than-typical phase of parallel play is characteristic of children Joy's diagnoses/labels. Keeping her among other children is worthwhile, but the expectation for her to begin more interactive or independent behaviors might be setting the bar too high for her, just now. Just like potty training too young, adults often try to push children beyond reasonable expectation.

And if the expectation is reasonable, I next question the method - all leading to questioning the amount of 'therapy'.

If I were to create a method for long-term one-on-one teaching, I would call it the Anne Sullivan method. I think Maddy just called this - wrap-around services.

For those of you just meeting me through this comment, I have my own nickname here. I am Barbara-Run-at-the-Keyboard. (I bet I do not have to explain.)

JoyMama said...

For the record re the last exchange w/ Lynda & Barbara -

First, an affirmation that Lynda & the family are convinced that the earlier kiddo who received so much of her "intensive therapy" at daycare got substantial benefits from it. The state did not make an effectiveness/outcomes argument when putting the kibbosh on having such large percentages of therapy in daycare; it was part of a budget cutback, along with a rationale that families needed to be a more central part of the process. (Not that that particular family wasn't involved! but I imagine there were probably others who abused the privilege. Aren't there always?)

As to Joy's therapy hours, we're in this weird situation where the state has been pressuring us to take on *more* hours -- only they don't want to let us do even a small well-thought-out percentage at daycare. Again they're not making an efficacy argument, nor are they raising questions about inclusion issues (as interesting a discussion as that might be.) My perception: they're counting beans and looking for excuses to deny requests for out-of-home hours, despite the fact that the actual waiver program language *does* allow for such placements if the goals are appropriate and the hour-count is not too high.

"Training Lynda" = ridiculous excuse.

I like the thought of an Annie Sullivan. That would be a whole lot easier to coordinate than the huge team we've got going now! (We had a team meeting last night. 11 of us around the table, counting JoyParents. And even so that count did not include one barista, the ST, or the OT!)