Thursday, December 28, 2006

the potty thing

(Here's the kids in their new dress-up costumes that they gave to each other for Christmas -- aren't they adorable??)

Ok, that's the cute part of this post. The rest of this is going to be a down-and-dirty, more information that you probably want, long and droning, and quite probably whining, rant about our potty training woes. Here goes.

I'm actually not sure where to start with this. I guess with where we're at NOW and I can fill in the backstory as we go. I hope it doesn't end up being as confusing as one of those movies that flashes back and forth so much that it loses you by the 3rd scene....

TODAY in our potty training adventures, Jacob is wearing pull-ups during the day, and diapers at night. He's peeing in the toilet (usually upon prompting, but he's generally holding his urine until we prompt him, and occassionally will take the initiative to go himself to the potty). He's peeing in pretty much ANY toilet (sometimes with a bit of cajoling), including public bathrooms, which is a nice generalization that I know a lot of folks have problems with. (Well, with their 2 and 3 year olds at least....) He is pooping in his diaper or pull-up still, but I'm so happy about the peeing thing that I don't really care right now about the pooping.

Here's some history: when Jacob was....oh gosh, I guess about 2 1/2 or 3, he started having some major constipation problems. I don't think it had anything to do with actually BEING constipated, I think he didn't like the sensation of pooping, so he was purposely witholding his poop, which gets you into a terrible bind (quite literatlly!), producing stool so large that it's very difficult (and painful!) to pass when your body finally insists upon it. Needless to say, we had a lot of cramping, screaming, nigthmares over this, which went on for a good year or two -- enemas (the evil "e" word) were involved, and none of us were happy with that. I researched all the possible ways of dealing with this "naturally", and there just wasn't anything that worked for us -- we either couldn't get the substance into him (oils), or there was no way to control how much of the dose he took (metamucil mixed with his drinks) and the results we saw were too hit-and-miss to be helpful, or the stuff we did manage to get into him just didn't seem to have any effect.

Sometime after his Autism diagnosis, we asked the Pediatrician for help. She prescribed Glycolax (also known as Miralax), which forces water into the large intestine, making for mushier, easier to pass stool. (The mushier the stool is, the less sensation it provides, and the harder it is to retain.) We messed around a lot with the dosage. We messed around a lot with trying to wean him off of it. We struggled with our own demons about it -- we are a very firm NO MEDICATION sort of family, to be giving something like this just felt wrong. We read reports of Miralax causing a bevy of problems -- including being implicated as a possible contributing cause of Autism (then again, what isn't....). For a couple of years we tried everything in our power to try to get him OFF the Glycolax. But the truth of the matter was that pooping was SUCH a traumatic experience for Jacob, which only was made worse by our efforts to reduce or discontinue his meds, that we finally threw in the towel in favor of trying to get him OK about pooping again. A year or so later, he no longer seems as traumatized about it, and now actually tolerates us suggesting that SOME DAY he'll put his poop in the potty too.

One thing that helped us come to grips with this was when he was tested for Celiac disease. I haven't talked about that yet, and I will in detail at some point, because Celiac is something that I think every parent of a child with Autism should be aware of and have them tested for (and was something I'd never even had on my radar before it was pointed out to me by a woman with several kids with both Autism and Celiac). Jacob does NOT have Celiac disease. But in the process of having him tested for it, he had a complete rectal exam by a Pediatric Gastroenterologist. (Don't think THAT wasn't a fun experience.....) She was very reassuring about the safety of the Glycolax product, and the importance of the product in the scheme of helping these kids get over their bowel trauma. She explained in detail (with illustrations!) how the product pulls water into the large intestine, and graphically explained how it would be very rare -- except in the case of an actual allergy to the product -- for it to cause any undesired side-effects or lasting problems. I left that appointment committed to continuing Glycolax long-term -- all my guilt about it was left in that office. I no longer have any plans or schemes or dates to start weaning him off. I'm going to trust my gut as to when the time is right. And that certainly won't be until years after he's using the potty for ALL of his toileting needs.

The peeing on the potty is fairly new to us. For years the child wouldn't even set foot in the bathroom -- the room was just too overwhelming for him. Around his 4th birthday, I made a big effort to get him at least sitting in there regularly, on the toilet on an insert, since he was too big for a small potty seat. He almost never had any success (I think he peed there a total of 3 times over the course of the next year and a half), but we rewarded him anyway by letting him read books there. I read about every potty training method imaginable. Most of them I instinctively knew would cause more problems than they would solve. The only one that seemed even somewhat doable was a reward-based system, but Jacob was totally non-bribable -- there was just nothing that he wanted enough to motivate him to actually pee in that toilet.

Salvation came in a marshmallow form. My Mom, ever the optomist, stuffed Jacob's Easter Basket this past year with all sorts of candy that he had no interest in eating. But one of the items was Marshmallow Peeps (she figured I'd eat them in any case, as they were a childhood favorite of mine). Imagine my surprise when I walked in her living room to see him stuffing his face with them, making all sorts of horrifyingly satistfied sounds while doing so. He ate the entire package before I even knew he was doing it, and had a predictable tummy ache that night. But that hooked him on Marshmallow peeps. I hit all the post-easter sales and stocked my cabinets full of the disgusting treats, then told him that every time he peed on the potty, he could have one. Suddenly we had peeing on the potty once or twice a day! When, after a couple months, we'd worked our way up to several times a day, we started varying up the rewards -- sometimes a peep, sometimes a piece of hershey's chocolate, sometimes a few M&Ms. Eventually we started dropping the treats, and now he only rarely ever asks for one, using "I peed on the potty" as a catch line to ensure his success at getting one from me.

We still have to conquer getting him to go to the potty when he needs to, rather than when we tell him to, and we really need to get him to initialize that first morning pee, as he gets up a good hour before Zoo Boy and I do most mornings. And, of course, there's the whole poop thing still ahead of us, but we'll get there. The fact that he's wearing pullups -- and keeping them dry! -- during the day is satisfying enough for me, since it took us 2 years to convince him to try something other than his standard diaper (hooray for RDI stage 5!!). He's been wearing underwear over his diaper/pull-up for a year now, since Santa brought him a package of underwear in his stocking last year. He's yet to let us just put the underwear on him with out the pull-up -- even though he's not had a daytime accident in months. But one step a time, we'll get there eventually.

Now, lest anyone thinks that I'm pretty laid back about this, let me assure you, I've had more than my share of trauma over the whole thing. Remember, I've been at this for, well, a long time. He's 6. And Zoo Boy shows NO sign of having any interest in doing anything anywhere but in his diaper. And I have NO energy to deal with it right now. So right now I'm in coasting mode with the whole potty thing. I'm still glowing with victory every time Jacob runs in to use the potty at the McDonald's. He's even using their soap to wash his hands -- which is a whole 'nother story. But needless to say, he and I have both come a long way, baby!


At 9:14 AM, Blogger Christine said...

I tried to post last night to tell you how much I enjoyed reading your small snapshots of Jacob at Christmas' Past but for some reason blogger wouldn't let me! It is amazing to read how far he has come. It is an inspiration to me. Honestly. Thanks so much for writing.

About the potty issue: I've had to adopt a "coasting" mode, too. Our story parallels yours in many ways. But we will get there. All of us!

At 7:56 AM, Anonymous Henry's Mom said...

wow, i just read through your last few blogs and breathed a sigh of relief! I was starting to really think you were super-mom, and i was feeling terribly inadequate...but now i realize you are human just like the rest of us; a wonderful mom, who faces daily challenges we all face with kids on the spectrum. you're doing a super job and your posts are helping so many others with RDI. Thanks for taking the time to write down all this info and try to be as kind and patient to yourself as you seem to be with your kids.


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