Tag Archives: bedwetting and autism

The BS (Bedwetting Saga) Continues – Part IV

“What do you think?” Richard asked me as he loaded soiled bedding, mattress covers and Emma’s nightgown into the washing machine.  “Have any theories?”

“I’m all out,” I said.  “No theories.  And I really need a theory here, it’s driving me crazy.”

“I think she’s forgotten,” Richard said.

‘Really?” I asked.  “I don’t get it.  She was doing great and now this is the third night in a week.  Last night she set off the alarm twice.  It just doesn’t make sense.”

“You’re trying to make sense out of autism?”

“Right,” I said.

“I think we have to go back to the basics, do the whole fire drill before she goes to sleep, remind her about the alarm and what she needs to do when it goes off, really make a big deal when she gets through the night without wetting the bed, the whole thing,” Richard said.

“Okay,” I said.  “She’s forgotten,” I added, thinking of all the times we thought Emma had learned something only to find she had not.

When Emma was about 18 months old we use to spend most afternoons in various parks.  A couple of my friends had young children around Nic and Emma’s age and so we would meet.  The children would play, or I should say Nic would, while Emma would perseverate on some self-made routine; the swing, the slide, run around the perimeter of the playground three times, back to the swing, the slide, over and over again until it was time to leave.  I had three girl friends I saw regularly and a couple of others not as often.  But the three I saw several times a week, Emma would often behave as though she’d never seen them before.  It was the kind of eccentricity I chalked up to Emma’s incredibly independent and uninhibited nature.  Emma did not care what others thought of her, did not look to either Richard nor I for approval, was a “wild child” in her own little “hippy dippy” world as I use to describe her.

Emma’s peculiarities went beyond face recognition, she knew her own name when she was 18 months old, but a few months later seemed to have forgotten it.  The same went with colors.  At one point she knew all the names of the primary colors, but then at her special-ed preschool I was told she didn’t know any colors by name.  We have seen this inability to generalize information displayed in dozens of different instances over the years.

I mentioned in a previous post, when we were using ABA (Applied Behavioral Analysis) with Emma she could recite each and every one of the 400 flash cards correctly, but when it came to using the information she had learned in the world, she was unable to do so.  She readily told me the flashcard with the picture of the bicycle was a bike, but if we were walking on the sidewalk and I pointed to a bicycle, she was unable to identify it.

I remember when she was three, her ABA based preschool taught her to recite her name and address.  For a month she proudly recited the information when asked.  But when her teachers moved on to something else and then a few months later asked her for her name and address, Emma didn’t remember what it was she was suppose to say.

When we met Stanley Greenspan who developed the DIR (Developmental Individual Difference Relationship) model we learned more about autism and how so many children on the spectrum have trouble generalizing learned information.

“There’s nothing wrong with her memory,” Stanley said to us when we were in Bethesda training with him.  “She has a terrific memory.  She doesn’t know why this information is significant.   It’s not meaningful to her.  Your job is to make it meaningful,” he told us.

So how do we make our anti bedwetting campaign meaningful to her?  We will need to do as Richard suggested.  We have to go over everything the night before, make sure she understands what it is we’re trying to do and why.  We need to make a huge show of enthusiasm and unbridled excitement when she has a dry night.  Or as Stanley Greenspan use to encourage us – use high affect and take it up a few notches.  Emma loves a big display, so even if one is tired and has low energy if we ‘act as if’ she won’t care, as long as it’s full of loud cheering and jumping up and down, she’ll be ecstatic.

And who knows?   It may even work.

The Bedwetting Saga Continues

Last night several interesting things occurred.  To begin, Emma asked to sleep in her own bed.  This was terrific news as you can imagine the difficulty a child sleeping in the parent’s bed presents, while one of the parents (Richard) is delegated to the child’s bed.  Forget about getting adequate sleep, the very arrangement is cause for grumpiness to all parties.   So Emma demanded she sleep in her own room.  Down went the ‘water proof” mattress cover, on went the alarm – she had wet our bed the past two nights in a row – and off Richard and I went to sleep in our own bed, even if for only a few hours.  Sure enough, Emma appeared by my bedside at 2:00AM.

The difference was, we were not woken by her screaming, “Mommy come! Mommy come!” which is typically what happens when she wakes in the middle of the night.  The wails increasing in volume and frequency with every second until one of us goes to console her.  If left ignored she will simply scream louder until Nic has woken up too.  No one could ever accuse Emma of being incapable of problem solving on a grand scale.

Last night, however, was different.  There were no screams, no tears, just a small body appearing at my side.  “Hi Mommy!”  She said when my eyes opened.

“Hey Em,” I said.

And then she ran off to go pee in the toilet, unprompted, while Richard made his way out of our bed and into hers.  Emma slipped under the covers next to me and eventually went back to sleep without soiling the sheets.

In the morning Merlin, no doubt, taking his revenge on Emma for threatening him with the washing machine yesterday woke her by meowing loudly in her ear and pawing at her nose to ensure she was fully awake and aware he required some attention.  Emma carelessly pushed him off the bed before rolling over and attempting to go back to sleep.  Merlin, not the least undone by her lack of affection, leaped back onto the bed and sat on top of her hip.

“Come on Em.  Time to get up and get ready for school,” I said.

“No,” Emma said, burrowing deeper under the covers.  “Make pancakes,” Emma said, hopefully.

“No pancakes today Em.  You have to get ready for school.  We don’t have time,” I said.

“Pancakes,” Emma said, whimpering quietly.

“No pancakes. How about cereal?” I asked.

“No, pancakes,”  Emma grumbled.

“Don’t you want some cereal?  I have to go to work soon, but I have time to get you some cereal,” I said.

“No!”

“Okay,” I said.

Five minutes later Emma appeared in the kitchen.  “Cereal?” She asked looking at Richard.

“Sure Emma.  Coming right up,” he said.

Before I left for work I looked at the bedwetting chart we’ve been keeping since June 9th when we began this whole thing.  After a rocky first two weeks, Emma has wet the bed three times in the last month and a half, with two of those times being this past week.

Go figure.

I’m all out of theories.

Sleep

It has been reported 70% – 80% of children with autism suffer from irregular sleep patterns.   No one seems to know why autistic children have such a high rate of sleep disturbances, though there are some theories.  One theory is the hormone, melatonin is either lacking or in abundance in autistic children compared to their neuro-typical peers.

Over the years, Emma has had a variety of sleep difficulties.  These include everything from being unable to fall asleep until very late, to waking up at 3:00AM unable to fall back asleep until 5:30AM.  (I’ve written about many of these in previous posts. See Sleep and Sleep Issues Part II.)  For the last month we have been giving her melatonin at night, recommended by the neurologists we take her to.  It has been extremely effective in getting her to sleep at a reasonable hour and until last night, seemed to be helping her stay asleep as well.  However, last night broke all records.

Emma fell asleep at just after 8:00PM and then abruptly woke at just after midnight.  It wasn’t one of those groggy-fall-right-back-to-sleep awakenings, but a time-to-turn-on-all-the-lights-and-do-something awakenings.  Alert and ready for action, Emma first began to sing and then demanded pancakes.  In my exhausted state I had a moment when I actually wondered whether she had read my last post – Pancakes – on this blog.  Then I reminded myself she cannot consistently identify the letter p, much less read.

“Emma, it’s not time to get up,” I said.

“Go get Daddy, make pancakes?” Emma asked, though it was said as more of a statement than question.

“No pancakes, Em.  Sleep,” I said, at which point she began to whimper.

“Em, it’s really late.  It’s not time to get up.  It’s time to sleep,” I said.

“Take off alarm?” Emma said handing me the alarm I had pinned to her nightgown after the other nights deluge.

“No Em.  We need to keep the alarm on,” I said, fumbling with the safety pin and trying to put it back on as she fought me.

“No!  No alarm.  Go pee in the toilet,” Emma said and raced off to the bathroom where she peed.

As with so many things autistic, there was the good news and the bad news.  The good news was –  she woke up in the middle of the night and went to pee without prompting.  The bad news was she woke up in the middle of the night and was thoroughly awake, unable to go back to sleep.

“Great job peeing!” She prompted me as she got back into bed.

“Yeah, Em.  That was really great.  Can we go back to sleep now?” I asked.

“Time to turn on all the lights?” Emma said looking at me with a sly grin.

“No.  Definitely not time to turn on the lights.  Time to sleep,” I said.

At some point I must have dozed off as an hour later when I woke, Emma was sitting bolt upright on the edge of the bed, singing softly to herself.

“Pancakes?” Emma asked when she saw my eyes open.

“No Em.  Not til morning.  When it’s light out,” I added.

“Okay,” Emma said.

“How about some melatonin?” I asked.

“Okay,” Emma said.

I gave her half a dose, expecting her to fall back asleep, only she did not.  The melatonin, for once, did not seem to have any effect on her at all.

Eventually at 4:00AM Emma fell back asleep.  It was an exhausting night.

The good news:  she did not wet the bed, despite having removed the alarm and dumping both ‘water-proof’ mattress covers on the floor.

An Addendum

Last night Emma thoroughly soaked the bed at around 4:30AM.  It was a grand gesture.   Of course, as Richard had pointed out on more than one occasion, I was ‘flying without a net’ and therefore utterly unprepared for the great flood.  In fact, did not even realize she wet the bed until about ten minutes afterward when I felt her naked body snuggling up against mine in a desperate attempt to flee the growing pool of urine soaked sheets.  Her soaked nightgown tossed on the floor lay in a heap.

“Oh dear!” I said to no one in particular when I realized what had happened.

“Emma wet the bed,” Emma responded, nodding her head up and down.  Then she leaped up and turned on all the lights.  Whether this was an indication that she was now wide awake or as a means of further investigation, I could not be sure.

“No, no Emma.  We are going to go back to sleep,” I said, pulling soiled sheets from the bed and throwing random towels and ‘water proof’ pads down.  In my head I imagined Richard’s voice admonishing me, “Oh, so now you decide to use the waterproof pads.”

Emma watched me.  “Turn off the lights?”  She asked.

“Yes,” I said.  “Let’s go back to sleep.”

“Time to go to sleep,” She agreed, before turning off the lights.

A few hours later when it was time to wake up, Emma said, “Hi Mommy!”

“Good morning Emma,” I said giving her a kiss.

“Have to use the toilet,” Emma said.  “You cannot pee in the bed!”

“It’s okay, Em.  You had an accident.  But we’ll put the alarm on before you go to sleep tonight,” I said.

“You have to wear the alarm.  You have to put the alarm on,” Emma said.

“That’s right.  No big deal, Em.”

“No!  You have to pee in the toilet!”  Emma said sternly as though she were taking on the role of the bad cop in “good cop, bad cop”.

“That’s right.  We pee in the toilet.”

And then I remembered I had forgotten to have Emma “double void” last night before she went to sleep.  “Double void” is an expression used in the  “Seven Steps to Nighttime Dryness” booklet.  It refers to the process of peeing once before bed, then brushing teeth, washing ones face, going through ones regular bedtime routine before peeing once more just before getting into bed to go to sleep.  The booklet instructs, “Many parents, upon learning about the benefits of urinating twice before bedtime, report they have consistently done this for years.  You can teach you child to make “double voiding” part of his lifelong bedtime routine.”

“I forgot to tell you to go pee before you went to bed last night,” I said.

Emma looked at me and said, “It’s okay.  It’s okay.”

As I was shoving the sheets into the washing machine, Emma pointed to them and said, “Now the sheets take a bath.”

I laughed.  “That’s right Em.  The sheets need to be washed.”

Emma nodded her head and smiled at me. “Bye, bye sheets,” She said.

The Final Chapter (I hope) in the Bedwetting Saga

We returned to New York City Friday evening and I am pleased to announce my theories have all been proven wrong.  Emma has not wet the bed once in 17 nights!  This morning I looked at the “bedwetting chart” to make sure I was remembering correctly.  It took just over two weeks – exactly 16 nights – for Emma to stop wetting the bed using the Malem Alarm.  (See all “bedwetting posts” for full description on the process.)  The booklet, which came with the alarm, warned it takes on average three months for a child Emma’s age to completely stop wetting the bed.  When I read that I thought, okay add another three months because she’s autistic.  While it felt like a huge commitment on our part, it seemed well worth it in the long run and so we launched in.  Fully prepared for six months of sleepless nights, groggy, non-productive days with only a glimmer of hope weakly encouraging us to go another day.  Because we couldn’t know Emma would be able to train her muscles even after six months.  The autistic diagnosis throws everything into question.

I cannot tell if Emma takes any pride in the fact that she is now a “big girl” no longer in need of those dreaded diapers.  I cannot tell if she understands the significance.  Each morning Richard and I have said, “Emma!  You did it!  You slept without wetting the bed!”  And then we clapped and cheered while Emma smiled at us and repeated, “You did it!”

For those interested… we used the Malem Alarm purchased from www.bedwettingstore.com

We opted for the recordable alarm that allows you to record your own voice as opposed to the “car alarm” beeping noise, which we thought might frighten her.  (Though our prerecorded voice was pretty terrifying when repeated over and over again.)  We also purchased the booklet and “waterproof pads” (not fully waterproof) for the mattress.

Bedwetting (Part IV)

Emma has now successfully slept through the night without peeing for almost two weeks.  According to the booklet we received along with the alarm (see earlier bedwetting posts) entitled “Seven Steps to Nighttime Dryness – A Practical Guide for Parents of Children with Bedwetting” it is important to know when to stop using the alarm.  The booklet instructs:  “Before you stop using the alarm, your child should have 14 consecutive nights of dryness with nightly alarm use, and 14 additional dry nights using the alarm every other night.”

Well I don’t know about you, but this just seems like overkill to me.  Emma has gone 12 nights without bedwetting and if I’m honest, (which I’m about to be) she has only worn the alarm five or six times during those 12 nights.

“You’re totally flying without a net,” Richard said when I announced I just didn’t see the point of pinning the alarm onto her nightgown yet again.

“But she hasn’t wet the bed at all since we’ve been in Aspen,” I responded.

“Are you at least putting the pad down?” Richard asked.

I shook my head no.

“Are you insane?!” Richard asked.

“No,” I answered with a tinge of defensiveness.  “I have a theory about this.”

“You always have a theory,” he muttered.

I’m just going to interrupt this dialogue to say – one of the many wonderful things about family is they have to listen to ones theories.  I think it’s perhaps even part of US Policy on marriage and family or if it isn’t, it should be.  Theories are good, if for no other reason than it allows the other family members to tease the theorist later when their theory is proven wrong.  Which in my case is with frightening regularity.  But that doesn’t stop me from coming up with new ones.

“I have a theory,” I repeated, looking meaningfully at him.

“Okay.  Let’s hear it,” he said as my mother wandered into the kitchen joining us.

“Oh I love theories!” my mother added.

“Okay.  Ready?  Here it is,” I allowed for a dramatic moment of quiet to pass.  “She’s dehydrated out here and as a result she is hardly peeing at all, even during the day.”

“What?  You mean her kidneys are failing?” my mother asked with a look of concern.

“No, Mom!  I don’t mean it so literally.”

“But you just said she wasn’t peeing and you think she’s dehydrated,” my mother said.

“Okay, well not technically, but she isn’t drinking as much out here and therefore isn’t peeing as much either.”  I looked triumphantly from Richard to my mother.

Richard walked out of the room.

My mother watched him go and then said, “Where’s he going?”

“Richard hates my theories,” I answered.

“I love your theories,” Richard’s voice could be heard saying from another room.

A few days later after Emma and Richard had spent the entire day together, Richard said to me, “You know she’s been drinking apple juice and water all day.”

“Uh-huh,” I replied.

“Tons of liquids,” Richard said.

“Your point?” I asked, somewhat rudely.

“No point.  Just providing you with some facts.  Emma.  Consumption.  Lots of juice.  Lots of water. “

“Okay,” I conceded.  So maybe she’s not dehydrated.  Maybe it’s the altitude.”

“Basically you’re saying we hit on a free space while in Aspen, but she’ll start wetting the bed when we return back to New York.”

“Yup.  That’s what I’m thinking,” I replied.

“Huh,” Richard said.

So maybe I’m wrong about my theory.  At this point I hope I am.  And since this is now day 13 I’m keeping my fingers crossed that when we return to New York in another two days, I will be able to report an end, once and for all, to the bedwetting.   Regardless of my theories, Emma has done spectacularly well up to this point.  We are all so proud of her.

This, all of us, agree on.

Bedwetting (Part III)

The night before I flew with Emma and Nic to Aspen, Emma had her first completely dry night since we undertook our anti bedwetting campaign, (June 9th) complete with alarm, waterproof cover sheets, her progress chart and gold star stickers.  Since we arrived Emma has not had a single accident.  This is nothing short of miraculous.  I am looking at her chart filled with notations, gold stars and she has managed five consecutive nights with no bedwetting.

Richard took over when I arrived, giving me a much needed break.  Each morning when Richard reported Emma had not set off the alarm, in fact had waited to pee until the morning or had woken up in the middle of the night, dashed off to pee in the toilet, then came back to bed and fallen asleep again…  I have to admit, I was a bit skeptical.

“Really?” I asked.

“Yeah!  She did great!”

“And she didn’t pee at all in the bed?”  I asked.

“That’s what I’m telling you.  Another dry night!  Amazing!!”  Richard could hardly contain his excitement.

“Wow!”  I said.  So last night I took over as I am taking a seminar beginning on Friday and thought I’d try to do a few nights before handing the reins back to Richard over the weekend.  I spent the night next to Emma.  Every time she stirred I woke up , ever vigilant and wondered whether she would set off the alarm.  But she didn’t.  At one point, it must have been around 2:30AM she stirred, rolled over and I said, “Do you have to pee?”

“No!” she said.

“Are you sure?” I asked.

“No, Mommy!”  Emma muttered and fell back to sleep, as I lay awake watching her.

Someone once said to me during a difficult period in my life, “You have to get out of your own way.”

Now it seems I must learn to get out of Emma’s way.

Bedwetting Part II

Last night Emma slept through the night without peeing!   (See yesterday’s post.)  In brief we are using a device much like those irritating car alarms except that this alarm is smaller and secured to the shoulder of her nightgown.  I am coming around to the belief it serves a dual purpose and would be an excellent method of torture in warfare against the enemy.

I barely slept in anticipation of the alarm going off at any second and when it didn’t, began to question whether it was in fact working.  To verify, every 15 to 30 minutes I “checked” the sheets underneath Emma to be sure she had not wet them yet.

At 5:30AM the alarm sounded (Emma had inadvertently set it off in her struggle to remove the sensor from her underwear) and since I was fully awake and had been for a good portion of the night, was a bit better at helping her remove the sensor than yesterday’s almost comical attempts.  Only this time, having successfully unclasped the sensor still attached to the alarm, which was pinned to the shoulder seam of her nightgown, I could not shut the alarm (ie my voice) off.  Being confronted at 5:30AM by ones own voice repeatedly shouting – Emma!  Wake up!  It’s time to pee! – was brutal.

Poor Emma having done her part, (peed in the toilet) said to me in an irritated tone, “Turn it off!”

“I’m trying!” I cried.

“Ach!” Emma responded.  It was an utterance of profound exasperation.  Either that or her German heritage is taking hold in ways we could not have anticipated.

I was eventually able to dry the sensor sufficiently to turn the alarm off.  Emma had long since returned to bed, shouting out to me, “No!” when my recorded voice continued to irrationally demand she get up and go pee.

The alarm is certainly doing its intended job and so much more.   We continue –  11 weeks and 5 nights to go!