Category Archives: Bedwetting

Day 10

Posted on October 25, 2011 | 3 Comments

Riding the wave of my previous day’s success, I fully expected to come home last night to find Emma agreeable to whatever was placed on her plate.  With visions of cheerful family dinners in my mind I set about making Hollandaise Sauce (with those duck eggs and Ghee).  Making hollandaise is a meditative endeavor, I’ve learned.  I cannot carry on a conversation with someone else while preparing it.  I must be focused, attentive with a certain amount of serenity or the whole thing curdles or separates.  I didn’t have any lemons, so I used a lime instead and all went fairly well, though it wasn’t as thick as the hollandaise I usually am able to whip up.  I steamed the asparagus, cooked the salmon steaks, drizzled everything with hollandaise and called everyone to the table where upon Emma took one look at her miniscule serving and said, “No!  I don’t want to taste it.  It’s okay.  It’s okay.  Just lick it.  You have to put your finger in it to taste.  Just one bite.  Taste it.  I don’t want to taste it!  I don’t like this.”  And then she began to whimper.

It was one of those Sybil moments, with Emma scripting using her “stern” voice, then mimicking a TA at her school to take one bite, just one bite, then Emma’s own sad voice pleading and on it went.  Finally I said, “Em you have to taste it, then you can have some grapes and apple (skinned).

“Okay, okay, okay,” she said, dipping her finger into the hollandaise.  ”Taste it!”  She smelled the hollandaise, then tentatively licked her finger before looking at me with an expression of pure misery.  ”I don’t like it, Mommy.  I don’t like this.”

My family dinner a la Norman Rockwell fantasy fizzled and I felt an overwhelming desire for someone to come and feed her for a month or two – get her eating a whole variety of lovely, nutritional foods before disappearing again.

Later Nic came over to me and put his arms around me.  ”Hey Mom?”

“Yeah Nic?”

“I don’t mind this diet so much.  I still get to eat all my favorite things.”  He smiled at me.

“Oh, Nic.  That’s so nice of you.  You’ve been such a trooper with all of this.”  I gave him a hug.  ”Thanks for being such a good sport.  It means a lot to me.”

“It’s no problem, Mom.”

This morning as I made my way to my studio I thought about when we tackled Emma’s bedwetting.  We did our homework, found an alarm to alert us to when she’d peed, whereupon we rushed her to the bathroom and eventually she was out of diapers, sleeping through the night with no accidents.  All of that seems like ages ago, but in fact it was just over a year now.  It took three solid months before she learned to use the toilet without incident during the night.  I expect it will take that much time or longer for her to become accustomed to eating new and different foods.

For more on Emma’s journey through a childhood of autism, go to:   www.EmmasHopeBook.com

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The Cabin

Posted on August 16, 2011 | 1 Comment

Our cabin is a retreat of sorts.  It is the place I go when I want to think or just get away from it all.  Since I’ve been out here this summer, I’ve been to the cabin dozens of times, often with Emma in tow.  She loves it as much as I do.  So when Richard and I proposed that we do an overnight at the cabin, Emma was ecstatic.  This has been the first summer we’ve been able to contemplate doing an overnight in the cabin with both children as last summer, we were in the midst of our anti-bedwetting campaign. The cabin has no running water and therefore no toilet.  There is an outhouse just up the mountain, but it is far enough away that in the dead of night one is more likely to lie in ones sleeping bag, trying to cope with the discomfort of having to pee, than to make the trek to the outhouse.  But Emma no longer wears diapers to bed, thankfully, making a trip to the cabin all the more attractive.

We packed up our stuff, making sure everyone had an outer layer, and headed out, Emma could barely contain herself.  When we arrived, Emma raced inside, pulled out her nightgown and said, “Time for bed!”

Meanwhile, Richard dragged chairs out onto the porch, while I arranged sleeping bags on each of the two platform beds.  We convinced Emma to sit out on the porch with us to watch the sunset.

Both Nic and Emma wanted to sit in the rocking chairs with their sleeping bags covering them.

As we sat together we pointed out the bats who came out at dusk.

“Bats are going to bite you!”  Emma exclaimed, jumping into my lap.

“No, no, Emmy.  The bats eat insects, they’re not interested in us at all.”

Still, Emma was nervous and I think relieved when only a few bats showed themselves.

“Bye-bye bats!”  Emma said.

The clouds overhead became more ominous.  By 9:00PM both children had retreated to the safety of their bed.  As I read to them, the rain began to pound the roof.  There is something comforting about being inside a big one room cabin, warm and safe while the weather rages just beyond.

The following morning, the clouds had lifted, both children ended up in the one large platform bed with Richard and me.  By the time we made it back to the main house we were covered in mud and wet leaves.

“Go back to the cabin?”  Emma said.  Then with a sly grin she added, “Sleep in the cabin again!”

For more on Emma’s journey through a childhood of autism, go to:  www.EmmasHopeBook.com

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A Look Back and Then Forward – Autism

Posted on July 11, 2011 | 1 Comment

A follower of Emma’s Hope Book asked me about Emma’s use of the ipad.  In responding to her question, I went back to look at a post I’d written for both this blog as well as the Huffington Post last fall regarding Emma’s love of her ipad.  Last Friday when I wrote about this I promised myself to make a revised list of dreams for Emma.  Sadly I haven’t included her dreams for herself, as I’m sure if she could tell me what they were, they would be enlightening and probably quite different from my own.

Begin reading chapter books.

Become more proficient in handwriting.  Continue learning punctuation.

Learn to type using all fingers from both hands.

Beginning math.  Basic concepts – identify more and less.

Tell time on analog as well as digital clock.

Answer “why” questions.

Increase ability to tolerate new things.

Able to take shower, wash hair and dry herself independently.

Last year at this time we were in the midst of our “bedwetting saga“.  In an attempt to get Emma out of diapers and with the hope she might sleep through the night, we implemented an anti bedwetting campaign which took her and us until the fall to complete.  It was a huge accomplishment, one I’d all but forgotten about until I began rereading older posts of a year ago.  I remember, while in the midst of it, wondering what we would do if we couldn’t get her out of diapers.  Where would we find diapers large enough, but not too large that they didn’t leak during the night?  Since last year, a couple of companies have come out with diapers specifically designed for older children.  Never-the-less I am enormously relieved that Emma sleeps through the night now without wetting her bed.  Unless one has experienced the distress which comes from having a child older than five continuously wet their bed, it’s difficult to imagine what it’s like.

Since January, 2011 we have been fully engaged in our literacy program for Emma.  Dr. Marion Blank, who created the Reading Kingdom among other programs is a remarkable woman who has devoted her life to creating reading and writing programs for children.  She has had tremendous success with her literacy program designed specifically for children on the spectrum.  It is with her program, more than any other, that has given us hope that Emma will one day read and write fluently.

Emma’s handwriting from yesterday’s literacy session.

Had someone shown me this example of her writing and cognition a year ago, I would have been ecstatic.

I have always felt and continue to believe, Emma is extremely bright.  I would go so far as to say she is brilliant.  I don’t mean that in a kind of motherly-prideful-utterly-biased way.  I mean that I believe Emma is truly brilliant.

Yesterday while in Central Park, Emma wanted to watch the Delacorte Musical Clock strike 3:00PM.  Every half hour the clock, near the entrance to the Children’s Zoo, plays a series of tunes which change with the seasons while it’s bronze animals, a hippo, an elephant, a kangaroo, a penquin and a bear circle around the clock tower playing their instruments.  Two monkeys sit atop banging the bronze bell with small bronze hammers.

The Delacorte Clock in Central Park

Before the music began Emma said, “Watch clock then go see penguins.”

“No Em.  After this we have to do our grocery shopping and then we need to go home,” we told her.

To which Emma began to fret.  This was not how she wanted the rest of the day to go.  After the clock comes the penguins and after seeing the penguins, we must watch the seal who is old and almost completely blind, then off to the bat cave and then to watch the sea lions being fed.  Only then may we leave the park and go home.  Only we couldn’t do that yesterday, it was already getting late, Nic was off with a friend and would be coming home soon, one of us needed to be home when he arrived, etc.

“Em, try to enjoy the clock, it’s about to start,” I said.

“Both.  You have to ask Mommy.  Mommy!  Mommy I want to go see the penguins please.  No!  I’m sorry.  Mommy says no!”  She began to cry and scream.

When the animals began to parade around the clock tower Emma stopped crying and watched and after ten minutes or so of upset and by the time we’d gotten to the subway entrance she turned to us and said, “Go with Daddy to Seal Park?”

“Sure Emma.  I can take you to Seal Park while Mommy shops.”

And it was over.  Emma happily rode the subway with us, went with her dad to the park where I eventually went to meet them.  This was a terrific example of Emma getting past her upset in a relatively short period of time.

Emma waiting for the musical clock to begin.

For more on Emma’s journey through a childhood of autism and to read more about her literacy program, go to:  www.EmmasHopeBook.com

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To Pee or not to Pee

Posted on October 7, 2010 | Leave a comment

That’s the question at the top of my worry list today. For all those who have been reading Ariane’s recent posts about the ongoing bedtime saga, we can now add another challenge to the hurdles we’re trying to jump in getting Emma to sleep through the night in her own bed.  So in addition to the ‘ear thing’ the screaming, invading Nic’s bedroom and taking over ours, she has now peed in her bed for the last two nights in a row.

When she had her first accident the night before last I chalked it up to missing the second void of the double void nighttime routine (she pees once and then a half hour later pees again before going to bed). Ariane was out and I was reading to Nic in his bed. When I came back for Emma she had fallen asleep, missing void #2. Then she came into our room during the middle of the night with no clothes on I knew she had wet the bed, but I immediately associated her accident with the last time she wet the bed, when she also missed the double void. No big deal I thought. So we triple voided before bedtime last night just to make sure.

But she wet the bed again.

“I wonder if she did this in retaliation for making her stay in her own bed,” I said, stuffing the sheets into the washer.

Ariane thought I was being crazy/paranoid and we got into a squabble over that, but the bottom line is we’re going back to putting the ‘pee alarm’ on her again which I have to say feels like such a HUGE step backward.

“That means she has to sleep in here with me tonight because if the alarm goes off I have to help her,” Ariane said. “And if there’s any truth to her doing this to be manipulative, then she won. She got exactly what she wanted and is sleeping in here and you’re sleeping in her room. Plus, I’ve got this trunk show tomorrow and I have to get some sleep.”

“Well Nic is away on an overnight field trip so I’ll sleep in Nic’s bed with the door open, so I’ll hear the alarm going off in her bedroom and help her get to the toilet,” I said in a low grumble.

“Yeah and then you’ll have a big resentment against me,” Ariane argued.

“No I won’t,” I answered, not sure if I was bluffing.

So another two steps forward and one BIG step back, and I am bummed that it’s on the pee battlefront. I sooooooo wanted that to be over once and for all — one less thing on the depression list, one more plus in the progress report.

Tough tahooty. It is what it is. My big prayer is that once we pin the alarm to her underwear and nightshirt that she’ll remember how well she’d been doing and how much she doesn’t want to wear that uncomfortable contraption anymore. My other big prayer is that I won’t be resentful no matter what happens. We shall see.

Oh, the glories of sleeping in your own bed with your gorgeous, wonderful, loving wife! Hopefully this is just a one night stand.

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Wake Up

Posted on September 15, 2010 | Leave a comment

5:18AM – High-pitched screams emanated from Emma’s room waking us.

“I cannot believe this,” I said.

Richard groaned in response.

“Sometimes I think she reads our blog,” I said, referring to yesterday’s post.

Richard groaned again and turned over.

“Emma!  You cannot lie in here screaming,” I said when I went into her bedroom.

“Emma bit.  You cannot bite.  It’s not okay,” Emma cried.

“Emmy, did you bite yourself?”

“Yeah,” Emma said, sadly.  “You make Mommy so upset.  Mommy is angry.”

“Oh Em.  You can’t lie in your room screaming,” I said, stroking her bitten arm.

“You have to get Mommy.  Mommy, can I come into the other room now?” Emma asked.

What was incredible about this conversation was not only did Emma identify emotions (mine, not hers), she also asked whether she could come into our room.  I do not remember her ever asking before.  Typically she says, “Mommy come!” or “Mommy go in other room” or some variation of the two.

As we made our way back into Richard and my bedroom I reminded myself that at least she slept through the night until after 5:00AM.  The 2:00AM wake-up calls are, by far, the worst.  In addition Emma did not wet the bed, an added bonus I am grateful for.

After breakfast Emma took my breath away by saying, “Mommy take Emma’s picture?”

“Really?” I asked.  ”You want me to take your picture?”

“YES!” Emma shouted, jumping up and down.

“Okay, Em,” I said laughing.  ”Do you like having your picture taken?”

“Yes!”  Emma said again, smiling at me.  “Say cheese!” she laughed, posing for the camera.

For more on just how extraordinary this is, go to: Emma and The Camera

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Good Bye Diapers!

Posted on September 14, 2010 | 1 Comment

Richard and I made the decision in early June to get Emma out of diapers at night.  For a more thorough rendering of how this decision was made see: “Sleep” and “Sleep Issues (Part II)”.

On June 9th, 2010 we began our “anti-bedwetting campaign”.   See:  “Bedwetting”.  Little did we know our campaign would become “The Bedwetting Saga”.  See:  “The Bedwetting Saga” for more on this.  However, now over three months later, I feel it is safe to declare Emma diaper free.  Not only has she not wet her bed in several months, she is now sleeping in her own bed AND sleeping through the night.  As I write this I wonder whether I am incurring the wrath of vengeful gods – whom I do not believe in – but who still manage to worm their way into my thinking.  Such a declaration, after all, carries with it the risk of being proven wrong.  So be it.

Over the weekend, Emma found a stray diaper and said gleefully, “Emma put on diaper?”

“Who do you want to put the diaper on?” I asked.

“Emma put diaper on monster?” She said.

“Oh!  Good idea, Em,” I said.

Emma Diapering her Monster

Emma With Her Diapered Monster

“How about your doll?” Richard asked.

Neither of us has been able to figure out why Emma is drawn to monsters more than dolls, but she is.  Perhaps monsters are less threatening to Emma. Much in the way autistic children do not like looking directly at people, perhaps a stuffed monster is less disconcerting.

“No!” Emma laughed.  “You cannot diaper the doll!”

“Sure you can.  Here.  Here’s a diaper for your doll,” Richard said, handing her the diaper.

“Emma wear a diaper?” Emma asked.

“No, Emma.  You don’t wear diapers anymore,” Richard reminded her.

“Diapers are for babies!” Emma said.  (Not sure where she heard this, as we’ve never said this to her.)

“That’s right Em.  You’re too big for a diaper,” I said.

When Richard and I took on this project, we knew it was going to take determination and fortitude.   When Emma passed the six-week mark without an accident, we wondered how we were going to transition her back into her own bed and out of ours.  We also wondered whether she would sleep through the night once in her own bed or begin waking up in the middle of the night and coming into our room as she had in the past.  We decided, with her increasing language, to try talking to her about it.  Richard came up with the idea of using her desire to take gymnastics at Chelsea Piers as an incentive.

“Emma, you’re going to sleep in your own bed tonight,” Richard began.

“Okay,” Emma said, though it wasn’t clear she was really listening or if she was whether she understood.

“You need to sleep in your own bed all night.  You can’t come into our bedroom until it‘s light outside and then you get to go to gymnastics,” Richard explained.

“Go to gymnastics!” Emma said, bouncing up and down with excitement.

“That’s right.  You sleep in your own bed and then you can go to gymnastics,” Richard repeated.

“Emma sleep in own bed.  You cannot wake Mommy.  Mommy come and get you in other room,” Emma said, doing her best to sort through what she was hearing.

“No.  You cannot get Mommy,” I said.

“You have to wait until the morning,” Richard added.

“Okay.  Sleep, wake up, make pancakes with Mommy, then go to gymnastics,” Emma said, before donning her earphones and turning on her ipod.

Richard and I looked at each other and shrugged our shoulders.  “Well, we’ll see how it goes, I guess.”

For the past three nights Emma has slept in her own bed and stayed there until at least 5:45AM.  Last night Emma slept until 6:18AM before waking us.

“Do you think we’ll ever need an alarm clock?” I asked Richard this morning.

“We have one,” he replied.

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The BS (Bedwetting Saga) Continues – Part IV

Posted on July 22, 2010 | Leave a comment

“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.

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Posted in ABA, Autism, Bedwetting, DIR - Floortime, Parenting, Stanley Greenspan

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The Bedwetting Saga Continues

Posted on July 21, 2010 | Leave a comment

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.

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Theories

Posted on July 16, 2010 | Leave a comment

Autism is nothing without theories.  Specialists, doctors, scientists, geneticists, parents, everyone has a theory when it comes to autism.

Richard claims I have more theories regarding autism than the most versed specialist.  And he’s right, I do.  The only difference is, I freely admit 95% of them turn out to be wrong and the remaining 5% have no validity because while they may prove right for Emma on any given day, they do not hold up long term or within the larger autism population.

Richard and I have a running joke about my desire, my need for theories.  When we are confronted with any new behavior from Emma, Richard will look at me and say, ”And your theory is?”

The beauty of having theories is, autism remains an enormous question mark and so the most impractical of theories hold weight if for no other reason than because they are difficult to prove wrong.  There is so much more we do not know than we do.  The other thing about theories is they give us  (me anyway) hope.  Hope that we’re moving forward.  Hope that maybe this line of thinking is going in the right direction.  Hope that the theory will lead to another theory, which in turn will prove to be true, leading us to a cure, a cause, something, anything…  No matter how crazy, the theory stands until proven otherwise and with autism that may be for a long time.  It’s something, anything, to go on amidst the great expanse of unknown.

Richard usually leaves the theorizing to me, so I was surprised when he said to me last night, “I have a theory.’

“Really?” I said looking at him to be sure he wasn’t making fun of me.

“Yes,” he said.

“Great!  Tell me more.” I said.

“Emma is doing great. “

“And your theory is?” I prodded.

“That is my theory.  She’s doing great.  The other day she and I were walking down the street.  I passed her and stepped off the curb to hail a taxi, but she didn’t see me.  She looked around, her eyes got really big and then she said something, I can’t remember what.  But she was scared and didn’t know where I was.  I called out to her – Emma!  I’m right here!  When she saw me, she cried out – There’s Daddy!  There’s Daddy!  I found you!  That’s never happened before,” Richard paused.  “She was really frightened when she thought I wasn’t there,” he said.

Suddenly I remembered when Emma was three and we went to New Paltz for the weekend.  We stayed at a huge rambling hotel right out of The Shining.  Richard and I in one room, the children with Joe in an adjoining room.  At around 2:00AM I heard a door slam, thinking nothing of it I started to go back to sleep.  Five minutes later our door opened and Joe said, “Is Emma with you guys?”  In a panic all of us threw on clothes and began searching the labryinthian hallways calling for Emma.  We split up hoping we might cover more ground that way, I ran to the front desk and reported her missing to the hotel staff.  It was the dead of winter, snow drifts piled up around the hotel, I was terrified Emma might open one of the self locking doors to the outside and not be able to get back in.  She was bare foot with just her nightgown on.  After about 20 minutes when panic had turned to ice – when your body no longer feels it is your own – one of us found her.  It was either Joe or Richard, I can no longer remember, but I know I began to cry in relief.  She was holding hands with some man who worked for the hotel.  He was quietly talking to her – at that time she had almost no language – and leading her back to the front desk.   I was in tears, thinking of all the horrible things that might have happened to her.  But Emma acted as though nothing unusual had occurred.

Richard continued, “Her sentences are becoming more complex, she’s become much more engaged, she talks all the time now and it’s not just because she wants something.  She’s talking to connect with us.  She wants to connect with us.  And except for the other night, she hasn’t wet the bed in almost a month now.”  He looked at me and then added, “She’s doing great.”

I remember when Emma turned four we had a big birthday party for her, hired a musician to come and play the guitar and sing kid friendly songs.  Emma was dressed up in one of her “party” dresses with a tiara on.  She spent most of the party trying to lie down inside of the musician’s guitar case, ignoring all the other children and the music.  I remember plastering on a smile for our guests, at one point I excused myself and wept in the back, giving myself two minutes to cry before returning to the party and pretending everything was fine.  I didn’t fully understand her sensory issues; I hadn’t developed any theories at that point.  I was still in the process of reading everyone else’s theories regarding autism.

“It’s a good theory,” I said to Richard.

“Yup.  I like it,” he said.

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An Addendum

Posted on July 13, 2010 | 1 Comment

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.

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