An Idea Whose Time Has Come

A quote from one of Joy's daycare reports:

Potty: Sat on the potty after AM snack. Diaper was damp, so didn't think she would be able to go. But she sat. After a few minutes I asked her if she was all done. She looked away from me and within 30 seconds she was peeing. When she was done, she reached for the TP. Cool!

This quote was from April 2007. Joy was not yet three years old.

At age 6, she's still in diapers around the clock.

When it comes to toileting, the sliders and switches on Joy's mixer board (my favorite metaphor for her developmental pattern) have turned on, and then turned off again. As her words have repeatedly come and gone, so has her willingness to make beginning steps toward potty training.

It's been very hard to decide about making an all-out effort to get the toileting truly underway. I'd really been dreading any approach that involved panties and letting the accidents happen. I'd been rocked on my heels by the experience of datri over at Opposite Kids, whose Kayla was unswayed by an all-out four-day diaper-free marathon over the winter holidays.

One complicating factor for us is that most of the advice about toileting readiness for neurotypical kids has not been consistent with Joy's trajectory. Consider this list at BabyCenter.com:

• Can sit down quietly in one position for two to five minutes. [In our dreams!]
  
• Can pull his pants up and down. [With support - this one we've got]
  
• Dislikes the feeling of wearing a wet or dirty diaper. [Our sensory-seeker doesn't mind at all, might even like it]
  
• Shows interest in others' bathroom habits [Nope.]
  
• Gives a physical or verbal sign when he's having a bowel movement such as grunting, squatting, or telling you. [Oh, come on... you can tell when infants poop!]
  
• Demonstrates a desire for independence. [Hmmm... a little, maybe]
  
• Takes pride in his accomplishments. [Yes, but maybe not how they think]
  
• Isn't resistant to learning to use the toilet. [Totally off-and-on]
  
• Is in a generally cooperative stage, not a negative or contrary one. [Again, off and on. Those switches flip very fast.]
  
• Can follow simple instructions, such as "go get the toy." [Can, yes. Does? Maybe.]
  
• Understands the value of putting things where they belong. [In a few limited situations]
  
• Has words for urine and stool. [Not even.]
  
• Understands the physical signals that mean he has to go and can tell you before it happens or even hold it until he has time to get to the potty. [Only the one "kee" incident.]
  

The bits about being resistant/cooperative have been a big part of what's standing in the way about making a commitment to do anything more than sit potty in the evening before bath. For quite a while Joy was willing to sit on the pot and happily flip through a board-book or two. But then a few months ago she started physically resisting as soon as I would ask her to potty-sit -- and this kid can put up some powerful resistance, let me tell you!

Fortunately, Joy's intensive-therapy folks, Agency 2 (serving up their own House Blend of therapy combining behavioral and relationship principles), have a nicely flexible approach to toilet training.

What has come together in the past weeks has been a combination of readiness on the part of both Joy and her parents, and the willingness of Agency 2 and Joy's awesome-daycare-lady Lynda.

• Joy is often dry overnight.
  
• She's willing to drink a lot of water when we push it.
  
• She understands "first/then" and is willing to work for a relatively immediate promised reinforcer.
  
• Kindergarten is coming up and we want her to have this learning underway.
  
• Agency Two's training guidelines have the flexibility and willingness to "schedule train" without making the frustrating commitment to do a diaper-free boot camp approach.
  
• Lynda is happy to combine our goals for Joy with her daycare's standard potty-schedule routine

Following the Agency 2 recommendations (which are proprietary so I can't post the helpful document online, sorry!), we first did some thinking about desirable rewards that could be reserved for potty encounters, in a hierarchy of desirability. Then we spent several days after we got home from the lake trying to record the state of Joy's diaper every half hour. One important switch here was moving from having Joy in a onesie round the clock to wearing just T-shirts and elastic-waist pants. Onesies are delightful for preventing diaper-digging, but not so fine for moving toward toileting independence. The schedule-recording didn't actually reveal a lot in the way of pattern, but it did get us into a toileting schedule mindset, and pre-shadow for Joy that there was going to be more attention to diaper-related activities soon to come.

Then we sat down with our senior Agency 2 therapist and talked about initial goals, to get us and therapists and Lynda all on the same page. We decided on a schedule of a potty-run every 1.5 to 2 hours, in which Joy would help pull her pants down, clamber up on a footstool to sit on the toilet (with insert), sit for a nice slow count of ten, and then get a reward! Then she has to cooperate with re-diapering (generally standing up, at home anyway), pull up her pants, and work through a hand-washing routine.

We started on Saturday. So far, we have succeeded in getting through all the steps, including the ten-second-sit, every single time. As a side benefit, Joy is learning to count to ten, and is especially eager to fill in the "teh" when we get as far as nine. Sometimes she's in a mood to sit quite a while longer, though, if she's excited to play with her ribbon-reward or mylar-balloon-play reward.

And yesterday morning she woke up dry, was willing to play an interactive people game for a while after the count of ten -- and did a most excellent potty-pee.

I don't imagine this will be either quick or easy, and surely we'll be dealing with sliding switches for years to come. But finally it does feel like we're on our way.

Positive Stories

Last night we had a team meeting at our house, one of those delightful gatherings that gets all (or almost all) of Joy's baristas (intensive autism line therapists) in one place at one time, together with me & JoyDad & Lynda the Wonder Woman daycare lady.

These are remarkably productive meetings when we keep them on track. The biggest thing that threatens to derail them occasionally is that everybody gets too involved in the very first agenda item...

The first agenda item is positive stories.

I love starting meetings this way, and I love the fact that people have SO many positive Joy-stories to tell, that it threatens to take up too much of the meeting sometimes!

Last night's positive stories included:

• Joy ate an entire helping of cut-up spaghetti & red sauce -- with her fork. With almost no guidance.
  
  
• When one of her baristas was playing pillow-squish game with her, and saying a big ol' "Squish!" each time the pillow came down, Joy several times echoed the unusual sound "KW".
  
  
• At daycare, Joy was in her chair at the table playing with a puzzle, something that's usually not a big turn-on for her. Another child decided to be "helpful" and came over to take over, pulling pieces out of Joy's hand and putting them in the puzzle. And Joy, instead of checking out on the interaction, got mad, tried to hold on to the pieces, even succeeded in getting some back!
  
  
• Joy imitated monkey-noises, "oo-ahh-ahh-ahh".
  
  
• The "high-five" that we've worked into Joy's greeting and bye-bye routines has caught on like wildfire. It's such a charming way that she can interact that feels "normal" to people, and they respond with such delight. She high-fived the sheriff's deputy who came to change her Project Lifesaver battery, and a whole bunch of folks at church. Plus she high-fives Rose, who is a model of patience in holding her hand at the ready and waiting for Joy to come through with that high-five.

Once we've got a good foundation of positive stories to build on, it's ever so much easier to bring out the challenges, like how do we deal with Joy's grass-pulling and rotten-apple-eating in the yard? (we're going to try to provide stretchy-sequin bands, which have helped at daycare) or how do we deal when she's pingpong-ing around and won't slow down long enough to interact (sometimes it's calming to get her sitting in the high-chair, notched down to its lowest setting near the floor.)

Positive stories. Didn't I just mention recently how much I like them?

P.S. Here are some positive stories from me. This morning I went running again (OK, alternating walk with slow-jog) for the first time since I broke my toe last month. It felt fine. And, I interviewed yesterday for the university program I was talking about the other day, that would take my plate-spinning to a whole 'nother level. I don't think I've ever been so relaxed and confident in an interview before. The program feels RIGHT for me. Now the committee just has to agree! I should find out Thursday which way the decision tips.

Schedule

So anyone who follows my blog knows that scheduling is a big part of my plate-spinning. Joy's got 24 hours of House Blend intensive autism therapy a week, plus three therapists from the school district who each see her twice a week; I've got work, bells, church, volunteer; Rose has school, piano, etc.

Usually it all clicks together somehow.

And then we schedule a JoyDad foot surgery into the mix.

The originally-scheduled surgery time was for noon yesterday (Tuesday), and we were to get out at 3pm if all went well. Tuesday's not a paid-work day for me, so we had to find Joy-care. Fortunately Lynda stepped up to the plate, offered to take Joy for an extra day. Whew, problem solved -- so all I had to do was figure out which therapists to cancel (because the House Blend therapists can't go to Lynda's anymore).

Then on Monday JoyDad got a call from the scheduler. "Sir, your surgery has been re-scheduled to 3pm on Tuesday. We'd now like you to arrive at 1:30 instead of 10am. No, you still can't eat anything after midnight, sorry sir."

Total fruit-basket upset.

First off, Joy couldn't stay with Lynda anymore, because things were likely to go past the end of the workday and we couldn't impose that on Lynda. Even if she'd've been willing to be imposed on, she had Tuesday evening commitments anyway. So now we had to find childcare willing to come to our home, and stay open-ended into the evening. Oh, and we'd likely miss Rose's piano class party & recital at 6:30.

This sent me into a pretty wild emotional tail-spin, I'm afraid. While it was only a couple of hours in between the time I blasted an e-mail to the church listserv and the time I got an affirmative answer, I spent that time mentally running around in a little hamster wheel, not having a very soothing prayer experience either.

I should have trusted, though. That first blessed "yes, I can take at least the first part of the afternoon" was enough to set the rest in motion. When I got home from work (where I'd had no phone numbers to be in touch with the people I needed), I was able to call all the therapists I'd cancelled, and all three of them were still able to make their sessions. Plus call the friend who was to bring Rose home from school, who then proved willing to be the sitter for the second shift. Plus figure out who was going to help pick up Joy from daycare while JoyDad was on crutches...

On Tuesday everyone showed up as planned. Joy was having a really good day, despite waking up at 3am. JoyDad, alas, also woke at 3am and had lots of time to overthink things plus get a mighty hunger on by the time he'd missed breakfast and lunch both. The sitter had arrived just before 1pm and we were getting set to go out the door when the phone rang.

"Can you come in for the surgery RIGHT NOW? We're running ahead of schedule and are ready for you as soon as you can possibly make it."

Zoom, out the door we went. The surgery-clinic experience was an efficient whirlwind. JoyDad was under sedation and a knee-down nerve-block (NOT general anesthesia, so better than we'd hoped) and under the knife within an hour after we'd left the house! The surgery went smoothly, so did recovery from the sedation. Another thing that went better than we'd been told -- originally they said no weight-bearing till the follow-up appointment. But instead, they put a velcro-ed foot-boot over his dressing and ankle-wrap, and told him he could use the foot for balance with his crutches as long as there's not too much pain.

We were home by 4:30.

The sitter said that Joy had done well, but napped hard and woke cranky, looking for "ma-ma-ma." (Yes, in those very words she was looking for me. Whoa. Now we just need her to say it TO me again!)

I got to take Rose to her party & recital after all. She did great.

JoyDad's still learning to use the crutches, and what it means to have both hands full of crutches to move around. (Can't carry an open cup of coffee, for example.) He'll be home today, on pain meds. I've got to run now and make my own lunch, plus a sandwich for him, usually a part of the routine that he does. I'll have a lot of extra responsibilities here, which will remind me how much we share the housework load!

But it does seem as if things went well. We'll know more about how successful the surgery was as time goes on.

Schedule. Augggh, look at the time!!!!

Teaching Hospital/ity

We live in a university town with a slew of medical education programs.

Our university-connected health care is attached to a "teaching hospital" and generally comes with observers and learners accompanying the doctors, particularly for pediatric stuff. Joy's neurologist generally comes through the exam-room door like a mama duck with three or four little ped-neurologists-in-training swimming in his wake!

Joy doesn't seem to have a problem with this. She likes people, on the whole, and doesn't fuss at new faces. And I'm happy to accommodate. The world needs more pediatric neurologists, etc., and how else will they learn? I suppose that in certain circumstances I'd refuse to let my kids or myself be "practiced" on, but that really hasn't come up yet. With Rose's broken arm last year, the cast was wrapped by a student, under the careful oversight of the experienced emergency-room doc. At one point I let a student start an IV on Joy. What better subject than a kiddo who demonstrates so little fear and has a high pain tolerance? (Though if she'd missed the stick, I'd have asked for the teacher to finish the job. She did fine.)

We've opened our house to students too. Again with a university in town, the local Birth-to-Three was a natural fit for having therapists-in-training who were looking to Joy's therapists as mentor. Some of them brought some really interesting ideas and approaches, and Joy never rejected a single student.

Recently Lynda the Wonder-Woman daycare lady hooked us up with a friend of hers who also runs a home daycare and who was taking a class on inclusion of special-needs kids. She needed a lot of hours of observing such a child, at daycare and home and in therapy, to meet class requirements. We took her grocery-shopping with our family, opened our home to her, let her observe Joy at Lynda's. The world surely needs more daycare providers who have what it takes to care for and teach children like Joy!

One of our intensive autism line therapists, our House Blend baristas, has a special training role in the Agency 2 organization. We opened Joy's sessions to one of her trainees earlier this year too, training for someone else's team. The trainee connected nicely with Joy, came for quite a few sessions, expressed regret that she wasn't going to be working with Joy.

And then at the beginning of March, we suddenly wound up with a big gap in our schedule where one of the baristas had been. We thought of the new trainee... and she leaped at the chance to join us! She's been doing a great job so far. We could have limped along for weeks while Agency 2 tried to hire someone new for us and then got that person trained up from scratch. As it was, we were up and humming with a full team again remarkably quickly.

Hospitality and teaching are good things.

Knows Who She Likes

A guest post from Lynda, the daycare Wonder Woman! (It's an excerpt from yesterday's daily report.)

Joy was a real climber today. But not on her usual pieces of furniture. She kept climbing onto the computer chair at the desk and trying to get up on the desk. I finally had to take the chair out of the room because I couldn't get her distracted from it. She seemed to be going after Jackie Chan! I have a Got Milk poster of Jackie above the computer. She was totally focused on that when she was climbing. Maybe I should experiment with taking the poster down and putting it lower so she can reach it.

Joy's first celebrity crush perhaps?????

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.

More Daycare Awesomeness

Alas, we missed the daycare holiday party again this year, as we've done for several years straight, due both to bells and therapy.

But Lynda (the Wonder-Woman Daycare Lady) came through for Joy anyway.

Not only did the kids get holiday gifts from daycare...


Look at Joy's personalized gift bag!

What utter awesomeness. Thank you, Lynda!

In Praise of Awesome Daycare

I've mentioned Joy's daycare before, and officially dubbed her daycare provider "Lynda," after Lynda Carter of Wonder Woman fame. Today I'd like to let you know why we, and Joy, are so incredibly blessed in her daycare situation.

I work a part-time schedule. For the first two years of Joy's life, we had a daycare-swap arrangement with another family from church, who had a little guy only two days older than Joy. But after two years of swapping, the other family was looking to reproduce again and found another arrangement that would better suit an expanding family, so we needed to find something else. By that point, we were well aware that Joy was "behind" developmentally, and she'd been getting Birth-to-Three services for several months. We knew that we'd need something special, and we found it from a personal referral from a Birth-to-Three therapist, who had heard about what Lynda had put together in her home.

Lynda mixes things up with her daycare kids in two ways. She deliberately assembles a mixed-age group of children, regularly taking in new babies who then grow into years-long clients! And she deliberately puts together a mix of special-needs and neurotypical kids. Right now the mix is about half and half.

This daycare is a model of inclusion on a day-to-day basis, and she makes it look so easy. It really hit me the other summer one time when I dropped Joy off late and everyone was already out in the front yard, playing in a little wading pool. Lynda had the one girl with the most intense challenges (non-verbal, not very mobile, among other things) sitting on the bench of a little picnic table pulled up to the edge of the pool, with her feet in the water. Lynda was playfully pouring water over this girl's legs and feet, to a response of big smiles, while simultaneously tracking and interacting in turn with the other kids around the pool and in and out of the water, and managed to seamlessly welcome me and Joy as we arrived.

Lynda's place is therapy-central some days, with itinerant therapists from Birth-to-Three and the school district in and out to work with their various kiddie-clients. Joy's summer speech therapist was only there once this summer, working mostly out of our home, but her response to just one session at Lynda's was "This place is therapy heaven!" Lynda is eager to learn from the therapists and also make suggestions -- she's not a therapist by background, but has practically made herself into one by observation and continuing education.

Oh, and did I mention the reports? Every day during nap-time, Lynda writes up three or four paragraphs on each kid, with detailed specifics on their activities. Most days those messages are e-mailed to a private online group we have set up for Joy-reports, so JoyDad and I get to see them at work (only on the busiest days do they get handwritten). We've got the school-district therapists turning in their reports that way too, and Lynda's are easily the equal of theirs.

To top it all off, this week Lynda let me trade Joy-days because of vacation and holiday. I ended up having a day at home all to myself, though I did share it with JoyDad, swooped down on his workplace and whisked him off to a restaurant lunch.

Yes, she does read this blog -- thanks so VERY much, Lynda / Wonder Woman!