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.

Diapers and Care Coordination

Sometimes the little stuff just annoys all out of proportion.

One recent annoyance is actually probably a nice little step forward in Medical Assistance cost-cutting for the state... We learned toward the end of the year that Wisconsin had chosen a single supplier for home-delivery diapers through MA, so we were going to have to change suppliers. So I dutifully called our old supplier, Home Delivery Incontinence Supplies, and discussed how the change was to happen. We settled on a date for one final shipment (Jan. 28) to give me time to get things underway with the new supplier, J&B Medical.

To get set up with the new supplier took something like four calls, with some phone tag thrown in, some forms to fill out and mail back, a batch of diaper-samples for us to test and choose (because of course they had different brands than HDIS).

Then we got a week into February and hadn't received our final shipment from HDIS. The first customer service rep I spoke to confirmed that no shipment had gone out, but couldn't tell me why. Her supervisor was to call me back at work. No call came. I had to call again to discover that our "prior authorization" had run out Jan. 23, so they cancelled our shipment. Without informing us. No, they couldn't get a new prior-auth, because gee, they're not our supplier any more. Meanwhile, it turned out they had called my home number instead of work, and JoyDad spent 20 minutes on hold returning that call, not aware of all my phoning.

We had no leverage. What could we do, fire them? (Well, I guess I can tell the story on my blog... heh.)

But do we have any leverage with the new supplier? Well, no. We can't fire them either, they've been given the monopoly.

Fortunately the new supplier was nicely responsive. Diapers arrived promptly, and they're even brand-name (Luvs).

And... the annoying leakage problems that I wrote about a while back have been dramatically reduced! So there was a happy ending to the story. This time.

I sometimes feel that I'm not exactly grateful enough for the publicly-funded diapers, especially since we wouldn't qualify if it were an income-based deal.

But sometimes, it's the little things that take so much time and effort and tracking, and knowing that you're at the mercy of bureaucratic forces over which you have no leverage. Plus we learned recently at LEND that nearly 10% of families of children with special health care needs reported in 2006 spending over 11 hours a week coordinating or providing health care for their child.

I'm wondering if people were even counting this kind of stuff. Bleah.

Leaked!

You heard it here first! :-)

I haven't talked about potty issues much lately because there's been nothing to report. (Unlike various fellow-bloggers who seem to be on a gas-passing roll lately...)

At age five-and-a-half, Joy's still in MA-funded diapers, and though she's had several little strings of potty-pee successes over the past few years, basically there's been little movement on the whole toilet-training issue here (heh, heh -- "movement"!) For what seems like forever, I've been sitting Joy on the toilet, with a seat-insert so she can balance more easily, before evening bath. She's been fairly willing to sit on the pot and play with a board book together for a couple of minutes, but rarely produces.

Something interesting has been happening lately, though. In the past week or so, she's been waking up dry in the morning, more often than not. We've also been seeing some incredible diaper-leaks during the day, veritable waterfalls.

I think she's learning to "hold it." I think she probably also likes the sensation of "holding it," little sensory-seeker that she is.

Tuesday morning she woke dry, I tried a toilet attempt but she let loose between diaper-removal and actually getting onto the pot. Wednesday morning she woke dry, we tried the potty thing, she sat for a while without producing and we put the diaper back on (still hadn't peed by the time we got to daycare). This morning she woke dry, sat on the pot for a while, and then let the waterfall commence appropriately!! Woohoo!!!

So now what?

I've been rather avoiding the whole toilet-training issue, seeing as how life has been plenty full on its own. The Google results on autism & toilet training are pretty depressing, all sorts of stuff about spending hours and hours in the bathroom (like Joy would be willing, let alone me having that time to spend in the first place), or ABA incrementalism regarding "first you get your child to be willing to go through the bathroom door, then s/he needs to be able to remain in the bathroom for five seconds..." etc., which is obviously not where we are.

There have been several obstacles to toilet training as far as Joy is concerned. First is that she's not much of an imitator, so having a potty-competent big sister isn't all that helpful. Second is that she doesn't seem particularly aware of having a full diaper, either wet or messy (probably likes the sensation, if anything.) A big third thing is her communication delays.

Is there any chance that if we view this pee-holding as a new threshold of maturity, and push fluids and take her to toilet-sit fairly often to increase chance of success... that we'd actually end up with a potty-training trajectory? Or should we just add the morning potty-sit to the bathtime potty-sit rather than making a big push right now (heh, heh -- "push!")? Or do we need to plan for some fancy autism-specific training regimen?

Thoughts, dear been-there-done-that readers?

Product Hits and Misses: "Squeeze That Nickel" Edition

Squeeze that nickel till the buffalo hollers, dear readers! (OK, I guess that would have been the LAST depression when buffalo nickels were around. And they weren't even buffalo, they were bison. But still.)

Yes, today I've got several money-saving goodies to review. First up is a little trick I've been using for homemade diaper wipes. A friend of mine passed this tip along to me in a greeting card when Rose was born, and I've been using it ever since. (I trust that one of these years I'll be able to give it up. But that time does not appear to be close.)

So, how do you do homemade diaper wipes? Here's the recipe:

1/2 roll good-quality paper towels (I use Bounty)
2 c. water
1 T. mineral oil
1 T. baby shampoo

To get a half-roll of paper towels, you'll have to cut the roll with a serrated knife, as if you were sawing a log. I usually trim off any raggedy bits with scissors.

For a storage container, I use a one-gallon plastic lettuce tub:


I just bought a new one recently. The first two lasted me through seven and a half years... ohhhh I've been doing this for tooooo long....

Anyway. Mix up the water, oil and shampoo, and then plop the half-roll in, cut side up. Give it a few seconds to soak up a bunch of liquid, then take out the half-roll and flip it upside down so the smooth side is up.



Put on the lid (you may need to squish the roll down just a bit first, but that's OK). And there you have it. I was initially told to pull out the center core and pull the wipes from the middle, but for me it works best to take them from the outside. After the roll gets a little smaller, you can turn the roll on its side within the tub to make the wipes even easier to grab:



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OK, next item is in honor of the late, loud pitch-man Billy Mays:


How does this fit the "Squeeze That Nickel" theme? I'll tell you how. This stuff WORKS to take out stains. And if you can take stains out, you can put the clothes back in the drawer to wear again. And you don't have to buy new ones. And you save a TON.

Joy's clothes always seem to pick up more stains than anyone elses in this house, most often food-related. She eats enthusiastically and well, preferring to use her fingers. She does use fork or spoon when encouraged to do so, but does not always keep her mind on the task... She also tends to stuff her mouth a little too full, resulting in interesting driblets and droplets.

Yesterday I used OxiClean to get out mulberry stains from a white onesie, and dried-on red wine stains from the back of her dress. (Huh? Oh, yeah. No, there was no wine in her sippy. That wouldn't have spilled, right? Actually I was silly enough to go chasing across the yard after her with a glass of wine in my hand. Clumsy mommy!) Anyway, the stains totally vanished.

These last couple of days I've been seeing post-Billy-Mays OxiClean ads. And, as much as I was annoyed by his outsized voice and his impossibly-dyed-black hair and beard... the more moderated female voice that does these new ads does not make ANY kind of impression. I can't believe I actually kinda miss the guy.

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OK, one more product.



The lowly pinwheel may set you back all of a buck at the dollar store. But oh, the joy we get out of these things!

We can't leave pinwheels lying around for Joy to play with at random, because she doesn't take too long to crumple the wheel and bend the stick beyond all use. However, they're great when one of Joy's baristas needs to put a guaranteed distraction into her hand for just a minute while they jot something down or program something into the GoTalk. We've also had good success lately with turn-taking games -- Mama will blow on the pinwheel, Joy giggles hysterically, Joy reaches up a hand to spin the wheel herself, Joy giggles hysterically, Joy pushes the pinwheel back toward Mama, Mama blows on the pinwheel, Joy giggles hysterically... You get the picture. How many giggles can you usually buy for a buck, huh?

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OK, that's all for today... must go make more applesauce... squeeze those windfall apples till the worms holler, or something like that!

Not Knowing What You Don't Know

I gleefully blogged a little while ago about ditching Joy's ratty old cloth diapers (of course we saved them for primo rags!) in favor of disposables funded by Medical Assistance (MA), which are delivered to our doorstep.

The other side of that story is more forehead-slapping than gleeful. Joy actually qualified for Medical Assistance in April 2007, when we went on the waiting list for the intensive autism therapy that she's finally now receiving. We were excited to qualify because we thought we'd need that support to fund some therapy in between the time she aged out of Birth-to-Three (May 2007) and the time she got picked up by the school district (September 2007). But then we actually got our regular insurance to cover speech and occupational therapy for the summer. The only things we ended up doing with that MA card were that Birth-to-Three pounced upon the chance to bill MA instead of absorbing April & May's therapies themselves, and that we got a discounted annual membership to the local children's museum.

Then July 2008, when we came to the top of the waiting list, we got a new county caseworker. In our first meeting, she told me that MA would cover the co-pays for Joy's epilepsy meds, plus now that Joy was four, diapers would be covered too. Well, we hadn't missed too many potentially-covered months on the diaper front since she just turned 4 at the end of May. But the co-pays, that we'd been ponying up all this time! It turned out that we even could have back-billed those co-pays for an entire year, but for the fact that we'd been good consumers and had used pre-tax dollars through a Flexible Spending Account. So we couldn't go back and double-dip.

How do you know what it is that you don't know?

I went to a wonderful informational meeting the other day. It was held at the agency that runs our town's Birth-to-Three program, and featured a speaker from our Regional Children and Youth with Special Health Care Needs (CYSHCN) center. I'd never heard of the center before, or at least hadn't remembered it due to its awful crunchy unmemorable name. However, it turns out that it's a government-funded information service (read: no cost for the call) where parents can call to learn about local resources for their kids with special needs. The resource person gives you suggestions about available services, and then follows up with you later to see what success you've had accessing those services.

There were 5 moms around the table, having kids with different challenges and different ages, all avidly drinking in the information and taking notes and collecting handouts. Then we started exchanging information too, and things really got rolling. I learned the names of local epilepsy-support contact people, and that MA may pay for travel & lodging if you have to travel for a necessary medical service, and about a medical ID bracelet with downloadable information. I had a few nuggets to share too - the other moms hadn't heard about the children's museum discount, for example (nor had the speaker!)

Then despite that lovely information-rich session, and having talked there about my whole MA/diapers/co-pay experience, I learned something new in the comments when I posted about diapers... Trish gave this excellent advice:

Just make sure the doctor checks "no generics" on the prescription or you will get the cheapest diapers known to man!!

Gah! Trish, the delivery service that our caseworker recommended only has "generics" available, so we're working with that at this point. But see, there we go again -- I didn't know what I didn't know and nobody told me up front!

I'm a librarian, so information is my stock in trade. I'm very good at ferreting things out when I've got a known question (and even at getting library users to clarify what question they're really digging for when they don't ask it very straightforwardly). But when I don't know what I don't know, and am not aware that there's even a question I should be asking, I'm as stuck as the next person.

Blogging is one answer, I suppose. Regular in-person support groups with other parents in a similar boat, where things can come up in discussion, is another. (That's one thing I don't have going right now, despite my otherwise-awesome local support network.)

How do my fellow special-needs parents out in bloggy-land cope with this?

Christmas in August

You could potentially walk into our house any day of the year, look over at what's playing on DVD, and think Christmas. That's because Joy's very favorite videos are Baby Einsteins, and one of the most favorite of the favorite is Baby Santa. These magical videos are about the only thing that can keep Joy somewhat occupied for a span of more than a minute or two without direct intense supervision. So we've heard the Baby Einstein Orchestra do Jingle Bells so often we could sing it in our sleep.

But wait, there's more. This year, Christmas in August also means that I washed my last load of cloth diapers this weekend. After six years of stinky launderings, I am SO done. Wahoo! Joy hasn't been the slightest bit interested in potty training. [Clarification edit: and she still isn't. No, we are not done with diapers per se. We are not even started being done with diapers.] However, the Medical Assistance under which she receives her intensive autism therapy will also pay for diapers, once a suitably-disabled child turns four. We've gotten through the prior authorization paperwork hoops now, and the first shipment of diapers arrived this week, directly to our door. Talk about your early Christmas presents! I am done saving the environment via cloth diapers, virtuous as it was. It feels great to be saving mama a little bit now.

Last but not least, I also started playing Christmas music this week. I ring handbells with a semi-professional community group, and Saturday was our kickoff rehearsal for this year's Christmas concerts. It's a little incongruous to have Christmas bells ringing in my head already before school starts, but I do love to have that outside interest and sneak away to ring bells with my colleagues! Here's an MP3 clip of "Sleigh Ride" to give you a sense of how we make holiday celebration with handbells. Merry, merry!

Some excellent problem-solving

Joy operates well in context of routines (heck, don't most people?)

One particularly functional routine we've developed is at diaper-changing time. It's Joy's job to put away the diaper cream. She has to open the changing-table drawer, put in the tube, and close the drawer back up.

This morning when she went to open the drawer, there was a problem. She had the diaper cream tube in one hand, and a board book in the other. She tried to open the drawer a couple of times with the hand that contained the tube, with no success. I was half-expecting her to give up -- she's got such a short attention span, and often takes the path of least resistance. But no. She thought about it for a second, put the book down on the floor, completed the routine, and then picked that book back up!

It didn't have the feel of an Elvis sighting... I suspected that the King had not left the building...

Then this evening a similar situation occurred. This time Joy had the tube in one hand, a chewy ball in the other. Without missing a beat, she grabbed the chewy ball in her teeth, completed the routine, and then took the ball back out.

Most excellent!