Friday, April 13, 2012

Potty training a kid with special needs: Yet more inspiration!


My friend Judith Newman, one of the smartest, funniest writers and women I know, once did a piece for Child magazine about "outsourcing" potty-training for her son, Gus. He was eventually diagnosed with autism which, she realizes in retrospect, played a role in it. Judith is the author of You Make Me Feel Like An Unnatural Woman: Diary of a New (Older) Mom. I know you'll appreciate this one.

Potty Outlaw: What Happens When Your Child Could Not/Would Not Get Trained?

Let me say at the outset, I am not a do-it-yourself kind of gal.  When the going gets tough, the tough call in a professional:  That’s my motto.  Still even I, the Queen of Outsourcing, felt guilty as I dialed Bobby Newman.  Was I really this desperate?  Why yes! Bobby Newman (no relation) is a professional toilet trainer.  Well, what he really is is a clinical psychologist who discovered his calling.  Reportedly he could train anyone.  I didn’t believe he could train my son.

In two months, my son Augustus would turn four.  Over the past year I had bought all the books.  I’d followed the Dr. Phil program.  I’d listened to the professionals who told me, “Don’t worry.  When he’s ready, he’ll do it almost overnight.”  I read and re-read the guilt-inducing article in The New York Times on “elimination communication,” whereby six-month-olds who couldn’t even sit up were being taught how to use the potty.  WHY WAS MY ALMOST-FOUR-YEAR OLD CLUELESS?  What kind of a mother was I, that I hadn’t been able to get my son to this critical developmental milestone?

Gus is the sweetest, most cheerful, loving guy imaginable – and one of the most stubborn.  He has never shown the slightest inclination to do anything physical without a push – at this point, we were still carrying him everywhere and, much of the time, spoon-feeding him. Not that he couldn’t feed himself.  But he would smile at us beatifically and pretend he had no arms.  My husband John refers to him as Tiny Tim.

He would not use the potty even sporadically. He had already missed out on going to his preschool’s summer camp, because all the kids had to be potty-trained.  Underwear?  As far as he was concerned, it was a diaper.  He was not all that bothered by being dirty.  I had followed the pediatrician’s instructions to leave off the pull-up for two hours (no longer, because it’s too stressful), and let him experience the unpleasantness of peeing all over the floor.  But Gus could hold it; he had a camel bladder.  For a long time I fretted that he wasn’t trained because he simply didn’t understand the bodily sensations of needing to go.  Then, when I began putting on his pull-up after keeping it off for a couple of hours, and he’d go immediately.  Suddenly, it didn’t seem like a physical problem anymore.

Having a fraternal twin brother who’d been trained more than a year earlier didn’t help. My sons had been born almost two months early.   Augustus had mild physical and neurological problems associated with prematurity, including low muscle tone and speech delays; Henry had none of them.  Gus was tiny and skinny, and despite having perfect pitch and a keen mind for subjects that interested him (anyone who wants to discuss the solar system, please drop by my house) he looked and behaved like a much younger child.  Henry has the personality of Woody Allen, but the build of Dolph Lungren.  In their preschool, they were the smallest and largest kids in the class.

“Gussie, you got  to use the potty!  Potties are good!”  Henry would shout through the bathroom door, as Gus sat on the potty and sobbed.  Sometimes Henry would take it upon himself to drag his brother to the potty by the scruff of his neck.  Other times, Henry would fetch the pull-ups from wherever I’d hidden them and simply put them on his brother.  One day I looked around and realized I had a completely untrained son and six potties, one in every room in my apartment.  (Including one that played “Old McDonald had a farm” when you peed into it – not that that had ever happened.)   The subject had become so fraught that Henry began availing himself of the potty when I wasn’t watching, and insisting his offerings belonged to Gus.  “No, Gussie did it!” Henry would say, looking at me with eyes opened huge and round, the body language of the lying.  (Watch Bush’s eyes when he’s talking about how the insurgency is dying down in Iraq.  See what I mean?)

I started asking around.  Surely Augustus was so late with potty training because he was physically immature?  “Actually,” says Daniel Bronfin, vice chairman of pediatrics at Oxsner Clinic Foundation in New Orleans, and professor of pediatrics at Tulane Medical School, “there isn’t a correlation between late walking or speech and late potty training.”  Great.  So much for that excuse.

Now, about most childhood milestone I was chill.  I sort of enjoyed  my babies’ babyishness.  They still had bottles with breakfast (“We’ll give them up when we are five,” Henry announced to me recently) and I had not made Gus renounce his beloved pacifiers until he was 3 ½.    But toilet training was different.  At this point, I would have given Gus his own collection of monogrammed pacis if he just learned to crap in the toilet.

So I mounted my offense.  I wasn’t shy about enlisting help.    One of Gus’ teachers came over to the house, took photos, and made a little scrapbook called “Augustus’ potty.’  The cover is, well, a picture of a potty, and on every page of the book is a photo where Gus has perched a different stuffed animal:  “Mr. Rhino uses the potty!” that sort of thing.  He loved the book, carried it everywhere.  It did nothing, though in the future, I plan to show it to every girl he brings home.

Now, I am one of the most squeamish women you’ll ever meet. After my twins were born I stole surgical gloves from the hospital because I was so sure I would be unable to change diapers without them; as far as my husband knew, I had no bodily functions.  And yet when I couldn’t get Gus to use the potty, I suddenly became the All-Poo,-All the-Time network.  I couldn’t shut up.  I realized I’d been talking about this subject a little too freely when a sweet elderly woman I never recalled meeting stopped me in my building lobby and asked, “How is Gus doing with the potty?”  Apparently, I was practically issuing press releases.

“You’re making such a huge deal out of this,” said my friend Eric, whose daughter trained at 18 months.  “I mean, for God’s sakes, the world isn’t filled with adults running around in diapers.”  I heard a variation of this line from a dozen people.    But in my panicked state I began to think:  Who knows?  Maybe half the people at Skadden &  Arps are wearing Depends. 

But at any rate, I think my fears were not baseless.  In addition to the problem of the Ick Factor, I did not want my son to be teased. Three year olds are one thing; they’re usually not paying close attention.  But by the time a child is four, he/she has a very good idea of what constitutes a Big Boy – and wearing pull-ups, even if they feature Spiderman, is not it.

Enter Bobby Newman, Ph.D.   I’d heard about him through an occupational therapist I knew who said some of the mothers of her wee clients had used him.  Newman was booked months in advance, but I snagged one day of his time late in the summer.  Frankly, I didn’t ask too many questions about what he would do; I’ve always put great stock in buying one’s way out of trouble.  Hand over enough money, I thought, and in one day my sobbing, panicky baby would be transformed into the Master of the Porcelain Pot!

Newman is not exactly what comes to mind when one thinks, ‘psychologist.’  A compact, well-muscled  man, he used to compete  on the amateur body-building circuit, and for his first job – manning the midnight-movie showing of “Rocky Horror Picture Show”  -- he often played the spandex-clad muscleboy created by Dr. Frankenfurter.  He is balding and wears his hair long in the back.    His professional email address is darkoverlordaba@prodigynet.com.  “You’re trusting your child to a 37-year-old guy with a ponytail whose email is Dark Overlord?” my friend Eric said.  It didn’t seem a good time to mention that Dr. Newman’s other specialty, besides potty-training, was treating adult sexual fetishes.

“It’s all part of the mystique,” Newman explained solemnly, while I pondered the notion that a potty trainer needed a mystique.  I was somewhat cheered to discover that the moniker Dark Overlord actually came from a character in the movie Howard The Duck.

Newman has written several well-regarded books on autism and the ABA (Applied Behavior Analysis) treatment approach. ABA has both staunch proponents and critics, but essentially it is an intensive, extremely structured positive reinforcement system which creates desired behaviors by breaking them down into small logical steps. Many autistic children with normal IQs are highly rigid in their habits, and have a great deal of trouble with potty training.  Over time Newman found himself being called in to help – and not just with children who were autistic.  The Long Island-based psychologist discovered he had a gift – and lo, a specialty was born.  He was kind.  He was very comforting.  After a few conversations, I began to think to him as the Shit Whisperer.

While he certainly believes a child had to be physically ready to toilet himself – understanding when the body’s signals for elimination, for example – Newman does not believe in such a thing as ‘emotional readiness’.  Some kids, he said, just needed a push.  (As compared to John, who believed the situation was hopeless; he felt it was a physical problem, and we’d have to wait.)

Newman began the day with an evaluation:  my son’s medical history, character profile, habits, patterns.  How was Gus socially?  Most kids eventually learn to use the potty by imitating other people.    Unfortunately, one of the big problems was that Gus was still very babyish and did not do this.  Sweet and friendly as he was, he didn’t care what anyone else did.  This will be a wonderful quality when he’s twenty.  Unfortunately, at four…well, I had never realized before how much civilization depends on being a copy-cat.

Newman also asked me if Gus had any unusual fears.  No, I said blithely.  The dismissal of this possibility would define the next 2 months of my life. 

Much of the psychologist’s day was spent simply observing:  When did Gus have to go to the bathroom, and what were the signs?  He obviously had bladder control; it was harder to tell with the bowel control.  (For most children, the two do not always happen together.)

At the end of the day (during which Gus, clearly upset with the proceedings, had nevertheless taken a shine to the shrink), Newman gave me a game plan.  It went like this:

Tentative Plan Moving Ahead:

1.     Begin the day by giving lots of fluid.  This need not be done the whole day, but we want to start by giving him “ammunition”.
2.     Keep careful notes of times of urination and bowel movements.
3.     It seems that Gus looks for some privacy when going.  Feel free to have him on the toilet or potty and to step outside the room to allow him to feel more comfortable.
4.     We should have Gus in underwear.  At Summer camp or anywhere else they might not tolerate dirty underwear, use the pull up.
5.     Urinary training should be a matter of taking and “checking” every hour.  He can sit for a minute or two.
6.     We should take Gus to the bathroom when we think he will have to have a bowel movement, slightly underestimating the time and staying in the toilet until he actually goes.
7.     The rice pudding seems to be a desired commodity.  We should save it only for successful toileting experiences for the time being.
8.     Because Gus has been holding his urine for very long periods, we don’t have to take him all that frequently.  If he has not gone for more than five hours, however, we should move to the bathroom and stay there until he does urinate.  He need not sit on the toilet the whole time, but he should be within a few steps.
9.     Limit fluid intake 2 hours before bedtime (not eliminate, but watch).

When there have not been accidents for a few days we will begin initiations training.  This is done by setting a timer for when it is time to go.  When the timer rings, Gus will be prompted to say (preferably to another adult besides whoever is with him) that he needs to go.  In other words, one adult would prompt him to go tell another adult.  We will fade away the first adult as possible, as Gus begins to independently request.

Newman signed a copy of his book, and was gone.

That was it?  No Eureka moment?  At the end of a long (and expensive) day Gus was not one whit more inclined to sit on the potty than he was before.    How long was this going to take?

“It varies from child to child,” Newman said, ominously.    “Don’t worry, this whole thing will soon be a distant memory.”

“Soon,” as it happens, is a relative term.  For the next six weeks of summer I was a virtual shut-in.  My child ran around the house wearing a shirt and nothing else.  Some days, Gus would not urinate or defecate for 12 hours.  Then, everything would burst free, as it were, often on my Persian carpet, and he would be sobbing in frustration, but still refusing to use the potty.  Whereas Henry had been trained in a week through the miracle of bribery (M&Ms and, I’m ashamed to say, about $200 worth of Thomas the tank engines), Gus was seemingly unbribeable.  Even the promise of his beloved rice pudding made no difference.

We began to recognize when he had to go, of course – someone hopping up and down and screaming is sort of a tip-off – but to get him to go on the pot meant physically restraining him as he screamed.  Afterward, he would look so relieved, but he couldn’t get out of the bathroom fast enough.  I began to imagine him as a wee Howard Hughes, chained to the home forever, shuffling around half-naked with Kleenex boxes on his feet. I had about 2 weeks before nursery school started, and I was resigned to the fact that he woudn’t be able to go – or, at best, wouldn’t be able to start with the other kids.  I spent days in tears about this.  But Bobby Newman emailed me constantly, reassuring me that even though this was taking Gus a long time, to hang in there; there was nothing abnormal about him.  He was a creature of habit, and this habit was a particularly tough one to break.   Just having that daily assurance from was worth the price.

Then, about one week before school began Gus – a quiet little person whose speech is still very hard to understand --– started to explain something to John.  It was hard to piece together at first.  But eventually it came out.

Did you know there is an elephant at the bottom of every toilet, going “Thump thump thump” and waiting to eat you?  Gus knew.

Lots of kids fear falling into the toilet.  But a)they usually say so; and b) their fear isn’t quite so specific. 

“Why don’t you get him a nice stuffed elephant and sit it next to him in the bathroom?”  my friend Nancy suggested.    Another friend said I should tell him there are friendly elves at the bottom of the toilet, not a big mean elephant. 

Elves? 

I had yet another idea:  Hey, why not tell him there is NOTHING at the bottom of the toilet?  How about that?

I wish I had a recording of myself, shouting “Look!  No elephants!” about 40,000 times over the next two days.

On the first day, he stopped crying.  On the second day, he relaxed.  Seventy-two hours after being assured there were no elephants waiting to destroy him, he never had an accident again.

The great thing about a child who is such a creature  of habit is that once the habit is in place, that’s it:  He will not deviate, if he can help it.  The quality that made him so difficult to train is the same quality that makes him the potty champ – far more so that his lackadaisical brother, who can get so caught up in a game that he still occasionally ‘forgets’ to use the bathroom.

These days, most pediatricians recommend modeling bathroom behavior for your child (something neither I nor my husband did; we’re too modest to go to the bathroom in front of the dog, let alone the children.)  Also:  plenty of praise for producing, ignore accidents, and don’t push.  “They need to be pointed in the right direction, but the biggest error is to force a child to be potty-trained,” says Tulane’s Daniel Bronfin.  (Bronfin also adds that the biggest medical problem parents are don’t pay attention to that can impede potty training is chronic constipation:  “If it hurts to go, they won’t.”)

Also if he seems to be learning and then regresses “that this happens more often than not,” Bronfin says. “Kids want attention very badly.  If they find they’re getting more attention from accidents than from using the potty correctly, they might opt for the accidents, even if they’re getting ‘negative attention.’

But what if you’ve considered all these possibilities and your child is still resisting?  Well, consider the possibility that the child’s social development – his ability not only to explain what’s bothering him, but to process that information – may be lagging.    This was certainly the case with Gus. 

Did we make a mistake by pushing him?  Would he have been wearing diapers at ten, like I feared, or could we have simply waited another few months – or a year – and his fears would have naturally gone away?  Maybe.  I’ll never know.  But here’s what I do know:  potty training is not just about using a toilet.  Training changes your child globally.  “It’s not unusual for a child, once trained, to be pleased with himself, and to become somewhat more assertive and capable in other areas of his life,” says Bronfin.

That was certainly the case with Gus.  A child who had always been a little too good – almost alarmingly passive – began shouting at his brother, refusing to give up toys that Henry tried to take from him, insisting he wanted to be the Hulk for Halloween.  Other parents might have been upset.  We rejoiced.  He was taking action – doing what he should have done more than a year ago. It's as if he realized he didn’t need to be taken care of like a baby, so he could become a big boy in other ways too.

Gus has been fully trained for two months.  The only ‘gift’ he’s ever demanded for using the potty is a hug afterwards.  And after going, he still gets this look of wonder on his face; often he throws himself into my arms and says, “Mama!  Poo is b-yoo-tiful.”

And you know what?  Right now, it is.

See also:

Potty training kids with special needs: Weekend Boot Camp, Day 1

9 comments:

  1. "shit whisperer"!! OMG! That was HILARIOUS!!!

    Thanks for posting that - I really, really enjoyed it.

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  2. The picture of the toilet was absolutely hilarious! Thank God I wasn't drinking anything while I read this post or it would have come straight out of my nose.

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  3. Awesome post! I was cracking up and then wanted to cheer when he accomplished it. Funny how excited we get about it. In all honesty, very insightful article about all the facets that go into being able to use the bathroom. thanks for sharing.

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  4. Shit whisperer made me laugh, too!!

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  5. What a wonderful post. She too is a very engaging author. :) The insights were all great, I wonder if any of them would work for us. Haley is almost 15 and does not go on her own. She does go on the toilet occasionally, but not often enough or consistently enough to be out of pull-ups (actually Depends now.) I have witnessed her pee down her leg after standing up from the toilet. She had no reaction to it at all.

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  6. Thank you so much for posting how things go wrong, not just the "success" part.

    I have a special needs child as well, (24 week preemie, now age 5) and we're still trying to figure it all out in how to help her. The more relaxed about it I have been, the more successful and happy she has been. I get pressure from others all the time to focus on it, and the intensity always puts us both in a bad mood. The more casual I am about attempts, the happier she is, especially when she goes. I've had the flailing, the no!, the almost falling over to look at poop, the grabbing of poop to see what it is and where it came from, and is there corn in there today. (I stopped serving her mixed veggies with corn because it was grossing me out.) She doesn't want to interrupt play, doesn't care about feeling soiled at all. So I gave her a big plastic magna doodle pad & she draws (usually various circles of poop) while she goes to the potty. It's a great solution for kids who won't sit still unless engrossed, and it covers her lap so she's not tempted to examine everything (as you know, pee sprays everywhere from certain angles). Plus, you can disinfect the doodle pad with a wipe.

    I'm seriously thinking the "Shit Whisperer" has the intuition and common sense we all long to hear over the din of sticker charts and "make a really big deal out of it." Some kids prefer subtle.

    We forget that this is ALL new to them, and doesn't make sense...and when it doesn't make sense a child will fill in the blanks with the most imaginative thing none of us would dream of. Like feces-eating elephants.

    One Dad brilliantly had a plumber explain all the parts to a toilet to his son, to cancel out his fear of lurking poop monsters. And a doctor or friendly nurse explain anatomy. Scientific and matter-of-fact seems less "fun" to adults, but that is far less scary for a child. Wet/dry, soiled/clean. Basic yet profound.

    When I read Potty Training in 3 Days, I cried, because there's no way. Your blog made me laugh, and realize there's hope. There's always a solution.

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  7. At 25 and with aspergers syndrome and learning difficulties and epilepsy I still have problems with toilet training, so dont worry children arent the only ones that poo / wet themselves or need nappies

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  8. We also had trouble with our grandson (now 5 yrs old), he finally potty trained when he was 3 and a half. He was diagnosed with Aspergers when he was two. Our problem is his language, he can speak clearly when he wants. But he prefers to speak non-sense ( no language I can understand). His Speech Therapist with his school works with him,but at home its different. Any suggestions??????

    worried grand mom

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    1. For starters, his parents might want to have a consultation with his team at school if they haven't yet done that. They might also want to consult with a consultation with a behaviorist or behavioral psychologist who works with kids on the autism spectrum/special needs.

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Thanks for sharing!