Category Archives: Bedwetting

Day 10

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

To Pee or not to Pee

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.

Wake Up

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

Theories

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.